My journey with Cystic Fibrosis

Cancer and Lung Transplantation

2012-01-27T16:08:00.004-05:00

Lately it seems that more and more of my post transplant friends are developing some sort of cancer. With a transplant your chances of developing cancer are increased because of your suppressed immune system. But this risk can seem so minuscule compared to being able to breathe that most patients wave it off.

Then there is me...

My risk of developing cancer with a decent immune system in place is high to begin with because of my Lynch Syndrome. Then you take out that immune system of mine, which has kept me flu and cold free for quite some time, and you have a breading ground for abnormal cells. Is this a risk I want to take?

Honestly I don't know.

There I said it.

I don't know if I want to take that risk. My transplant center has said they are willing to take the risk as long as my evaluation shows I am a good candidate. But do I want to?

There are so many questions, so many tests, so much unknown about it that I just don't know. Even the team said they have never transplanted a patient with a history such as mine, or someone with Lynch Syndrome. I get tests done yearly to check for polyps in all the areas affected by LS. Will these tests need to be done every 6 months now? Am I willing to have endoscopies, colonoscopies, MRI's, CT scans etc done every 6 months just so I can breathe better? Am I willing to constantly worry that every little lump or fever could be cancer developing somewhere in my body? I just don't know.

I wish I could say that being able to breathe like a healthy person is worth that risk, and a part of me says HELL YEAH. But then there is the other part that is VERY nervous that something will grow so fast on me that I will develop cancer and die. I don't want to die from cancer. I have spent 25 years knowing I will die from CF. I can't change that now. Maybe I am more afraid of dying from something that I am not expecting than I am of actually developing cancer? Who knows. Will all these worries stop me from being evaluated? Nope. And I know I still have a few years left with these air bags that I don't need to press the issue about being listed until later on. I have time to think and wonder and worry that I am making the right choice. Because in the end, only what I decide is right. Whether my mom, dad, husband or friends want me to get the transplant, only I can say yes to the doctors. Only I can do what I feel is right for me. And if in the end I decide cancer is worth the risk then great, cut me open and give me new lungs. But if I decide it is not worth it, I hope that those close to me realize that it was a long and difficult decision and one that was not made lightly.

2012 CF Awareness Video

2012-01-20T14:26:00.002-05:00

Check out this fabulous CF awareness video done by a good friend of mine, Beth.

Video

Make sure to read the blurb under it as well. I can't get it to copy to my blog for some reason :/

Hospital Update

2012-01-13T18:29:00.000-05:00

This hospital admission is turning out to be quite eventful, though short. I came in Thursday morning for my endoscopic ultrasound - cysts on my pancreas look normal and just need to be monitored by MRI every 6 months - and was admitted afterwards. I got to hang out in endoscopy all day until 4pm when my room was finally ready.

I got my PICC placed today, luckily that was uneventful! I got my nice dose of Benadryl prior and was nice and high for it. Worked for me! I would rather not be totally with it when I get it done.

Unfortunately my heart rate has been really high all day today and my blood pressure really low. I have been drinking water and got 500cc of saline to try to help but its not doing much. I got an EKG done to check my heart and it showed tachycardia....nothing new. Resting my heart rate has been in the 120s and when exercising with PT it went up to 168. I am usually around 100-110 resting. This is new since I was not having this issue on Wednesday before I came in. Hopefully it is just from the Benadryl and "excitement" of the PICC placement.

The results of my OGTT I had done on Monday came back positive for CFRD (Cystic Fibrosis Related Diabetes). My A1C was 6.3 (not too bad) and my 2 hours post sugar level was 215. Anything over 200 is considered positive. So I am right there over the line. I can get started on regulating my insulin and maybe I won't be so ridiculously tired anymore! I am not surprised by this result in the least. I knew it was gonna happen at some point and I am glad to get it over with prior to transplant. I don't want to have to learn 2 new major life changes at once!

It is looking like I will be getting out on Sunday which is great. Since I am not really sick and just getting IVs started so I can make it through the semester, there is no real reason for me to stay. Unless of course I feel shitty all day tomorrow and Sunday. But as long as my HR goes down to normal and these low grade fevers stop I should be good to go!

I Miss Working

2012-01-10T11:19:00.000-05:00

Yep I said it. I miss the dressing up, doing my hair, social interactions of a job. A steady 9-5 everyday job.

Yesterday I had my first OGTT (Oral Glucose Tolerance Test) - for another blog another day I promise - and on my way I drove past a small corporate park right on Rte 1. Its down the street from my house, maybe 10 minutes to get to it depending on traffic of course. But I found myself wondering what places of business were in there and if they were hiring for secretary - oh sorry administrative assistant - positions and how much they paid. I found myself day dreaming about getting up in the morning and showering, getting dressed and heading to work. Doing the same old boring paperwork day after day but thankful that I had a job and was getting out of the house. Enjoying the paycheck that I was bringing home weekly and relishing that I was again contributing to society.

Then reality hit. I was exhausted from being up at 7am so I could be in Boston by 10am. I was SOB walking into the CT clinic to have the test done. I went home and slept for 2.5 hours because I was so tired, which beat out exercising.

If I went back to work I would have to go to bed at like 9pm, or earlier, in order to get enough sleep to possibly stay awake for the full day. I wouldn't be able to exercise because I would be so tired all the time. I wouldn't be able to do any type of housework or cook because I would be exhausted all the time. I would be a miserable bitch because I would be exhausted all the time. I wouldn't want to do anything on the weekends except stay in bed because I would be exhausted all the time.

Working again, 40+ hours a week on a set schedule is not doable for me. Its my reality. I need to sleep when I can. I need to be able to rest a whole day if needed - and not just on the weekend. I need to have the flexibility to be hospitalized when needed and not worry about my job. It sucks and I want to work again. I truly do. I miss all that comes with working, yes even the days where I was bored out of my skull with nothing to do. Because at least I was out of the house, making a living and not depending on SSDI to pay all my bills for me.

I guess it is something I can look forward to post transplant...

Ringing in the New Year!

2011-12-31T19:17:00.000-05:00

2012 is sure to be filled with a ton of excitement. P and I get married in October, then go on our honeymoon to Hawaii. My brother turns 30 around Thanksgiving so we are going to celebrate it with my family in PA. I am continuing my Master's classes (thanks to the disability department at school for getting my financial aid sorted out). Many new babies and weddings this year for friends and family. Plus any exciting things that may happen along the way. I am looking forward to a new year filled with exciting times and new adventures.

I have set some resolutions for myself for this upcoming year. With no pressure though. These are things that I need to work on either way so I am adding them to my resolution list.

1. Use my Wii fit to exercise and get my exercise age down from 44 to something closer to 31. I want to make sure I am not on O2 24/7 when I walk down the aisle to marry the love of my life.

2. Eat healthier foods, and cook more so the whole family eats better. We all need to eat better and stop with the processed junk foods.

3. Pay more attention to world happenings. I am ignorant to what is going on in the world. The news always depresses me but then I don't know anything of importance.

As I ring in the new year tonight with my soon to be hubby I reflect back on the 2011 year. So much happened! P proposed to me (by far the most exciting!). I started grad school. We had our first family vacation together. We got a dog. I started the transplant evaluation process. My family got to visit me and see my new home. P bought a new car. I got my hysterectomy. My afghan won 1st prize at the local fair. And that is all I can remember right now. There were many little moments through out but these are the most memorable. Unfortunately not everything was happy. We lost many CF friends. The greatest lost for me was Bree. I still miss her terribly and hope she is enjoying her time with those she loved and lost before her.

I hope everyone has a happy and healthy new year and takes whatever life hands them in stride. There will be good times and bad times but through it all we will press on. May you all be safe this evening!!!

A Fabulous Blog Post for the Holiday Season

2011-12-25T21:00:00.000-05:00

Piper's great blog post

Read it and spread a little good holiday cheer :)

Gut Troubles

2011-12-21T19:47:00.001-05:00

The past few weeks I have been having some gut issues. I initially thought it might be Celiac's (runs in the family) but we are trying something else first. I have been really bloated, worse than normal, and it comes on even if all I have is a small cup of OJ. Not normal. I have also been having bathroom issues that I won't go into detail with on this public of a place.

Today at clinic I got an X-ray done of my abdomen and am getting tested for C. Diff. The X-ray showed no blockages but a definite fullness. As in stuffed to the gills, need to do something about it fullness. So tomorrow I get to spend all day trying to empty myself out so that I can enjoy Christmas dinner and not want to explode, literally, after my first bite. My fingers are crossed I only need the one day since I have a lot of food shopping to do on Friday to prepare for dinner on Christmas day.

Other than that my PFTs were slightly up (40% vs 37% last time) but I requested a round of IVs prior to starting class on the 19th. I go in for my endoscopic ultrasound on January 12th so we are going to start IVs then as well. There should be no issues with me being out to start on time. If I feel a lot better after my mini clean out tomorrow I might see about just making an appointment for that week and seeing if I really need to get IVs. Who knows, a clean gut might help the lungs out.

That is all my bloggie friends. Hope you all have a very Merry Christmas and Happy New Year!!!

Crochet Sale for the Holidays

2011-12-05T19:39:00.001-05:00

I have a few pieces of inventory I am selling on SALE for the holidays. If you are interested just post under the picture of the piece.

Crochet Cyster's Crafts

Plus it will help us pay for our wedding!!!

Insert Catchy Title Here

2011-12-02T13:51:00.001-05:00

I have been a miserable, hostile bitch the past couple of weeks and had no desire to blog so I apologize. Besides you probably would have blocked me if you could have seen what was in my head! We lowered my Wellbutrin dose to 150mgs so I would stop getting nauseous, and it helped, but I got violent. Not physically, but verbally and in my head. So once I figured out that was the culprit I stopped! Now waiting to get back to normal.

Wednesday I had a very busy day in Boston. I started with CF clinic. My weight is up, my lungs sound fairly clear, but my inflammation is wreaking havoc on me still. Last appointment I was 50% FEV1 (fluke but still) and this time I was 37%. Part of that was because I had to avoid any duoneb or symbicort before my PFTs at transplant clinic after CF clinic. Shhh I did about 3 minutes worth of my duoneb at 7am so I could at least function somewhat. My guess is I am about 42-43% based on my SOB and overall feeling healthwise. So we decided to put me on 2 weeks of oral Cipro and I go back the week of Christmas to see if I have improved at all.

After clinic it was off to get a full set of PFTs done and a 6 minute walk test for my transplant evaluation. PFTs were uneventful, just like usual lol. The walk test I started off slow so I could maintain my pace the whole time, but I ended up having to slow down about halfway through. My O2 wasn't too bad at least. I dipped to 88% at one point, but since it was reading my HR at 71, we weren't sure how correct it was. So 90% was written as my lowest sat for the walk. I have no idea how far I walked, as I didn't ask. One thing I found interesting was my BP before the walk was 99 (top number I don't remember the bottom number) and 129 (again only top) after. That's quite the jump!

After that I had a 90 minute reprieve to eat lunch and relax till I had to go get my bone density scan done. Since it has been almost 6 months since my hysterectomy, it was time to get scanned and make sure I haven't started to loose any bone mass. We shall find out in a couple of weeks!

Other than that, nothing exciting to post about. Only things I have left to do for my evaluation are my last shot for the Hep B vaccine, dentist appointment and the 24hour PH probe. That one I am not looking forward to! Tube down my nose in my stomach for 24 hours....yay......

So....Many....Babies

2011-11-15T21:19:00.001-05:00

Tis the season I guess! Every time I turn around on Facebook someone else is announcing their pregnancy. Don't get me wrong, I am thrilled for my friends and family, but at the same time, I feel that pang of jealousy.

I thought having the hysterectomy would have made my reaction to babies and pregnancies much harder to deal with, but I have noticed no change. The only real difference is that I no longer think to myself that maybe it wouldn't hurt to have a baby of my own. Now I know that possibility is gone, so I no longer think it. But it doesn't make it any harder on me, if that makes sense.

I see these women, some girls I went to school with or worked with or knew through other friends, having babies, posting pictures of their families and the smiling kids, and it makes me hurt. I knew these women when they were just kids themselves. It is strange seeing them with families, with adorable babies in their arms, with their proud husbands by their sides. It makes me want that for me and Peter.

I know I will have a step daughter soon, and I know she calls me mom already, but it is NOT the same. I don't have the same love for her that a mother has for her baby when she holds them in her arms for the first time. I don't have that special bond, that connection that makes motherhood so precious. I don't get to have my son/daughter hold my finger for the first time, or smile at me for the first time, or hear momma for the first time. I missed out on all of that, and it makes me hurt. Not sad, hurt.

These feelings don't surface very often, thankfully, and usually don't stay for long......

Paracord Bracelets to Help a Friend

2011-11-14T19:07:00.001-05:00

Today I received my paracord bracelet I ordered from a wonderful friend. She makes and sells this beautiful pieces to help pay for her double lung transplant she had a few years ago. I ordered mine in purple and green to show support for Cystic Fibrosis and Organ Donation. I can't wait to wear this out in public and have people ask me about them!

Beautiful aren't they????

If you are interested in purchasing on (or more) see her website Here.

Please Vote for US!

2011-11-12T09:16:00.001-05:00

http://www.getmarried.com/americas-top-bride/vote/550/

Peter and I have a chance to win $5,000 for our wedding and when you vote you can win a $500 Michael's gift card :)

Please help us make this wedding super special!!!

Slight Update - Nothing Exciting

2011-11-01T22:13:00.001-04:00

Sorry for the lapse in posting. I can't say I have been busy, I just haven't been up to blogging.

My PCP and I decided to stop the Wellbutrin, restart the Celexa until my stomach settled then try a lower dose of Wellbutrin. So tomorrow I will be trying the Wellbutrin again, but keeping on the Celexa for a week to see if that helps. If neither helps with the nausea then I will have to decide if I want to stay on a reduced dose of Celexa and deal with the side effects, or to try to ween off of them altogether. The latter of course opens me up to crazy mind games and bad moods again. However, I am in a much better place than I was 4 years ago when I started on the meds. So perhaps I will be OK weening away from them. Only time will tell, as the saying goes.

Last week I had my follow up transplant appointment to discuss all the testing I had done. I didn't get a chance to meet with the NP since she had an emergency that morning so I am meeting with her this Friday. But I did get to see nutrition and the social worker. Everything seems great so far. My weight is stable and at a good place. I did mention that the Celexa has played a huge part in my weight stability recently and that I will probably be going off of it. If this happens I will have to work extremely hard once again to keep my weight up. If I get below 17.1 BMI then I would be deemed too thin for transplant. All that I really need to do is get my teeth checked out and start pulmonary rehab. I think I am going to wait until Christmas break to begin that though. It is 3 days a week and right now with my grad class I know I won't be able to handle them both. But if I am already doing the 3 days a week when next semester starts I can work class into it.

That is about it. Health has been stable, I guess. Preparing for winter and the cold season.

Anti-Depressant Woes

2011-10-19T11:11:00.000-04:00

My PCP and I decided to switch up my anti-depressant. Some of the side effects of Celexa were starting to get annoying. I was ale to deal with them at the 20mg dose, but when we upped that to 40mg, they become much worse.

So far things seem OK with my mood. I seem a bit happier. She did warn me that some people experience manic episodes or anxiety. So I might be experiencing some mania. That's OK.

Unfortunately I am also experiencing some of the not so pleasant side effects, such as sleeplessness and nausea. The nausea is the worst. I can deal with some restless sleeping, but feeling sick to my stomach for a few hours a day is just blah. Yesterday was the first day I really noticed it. Sunday I felt a little nauseous but it passed quickly. Yesterday however, I ended up laying down to try to get it to pass. I had gotten up at 6am (woke up and couldn't get back to sleep) so I thought maybe that was the issue. That didn't work so I had some ritz crackers and plain white rice and I felt much better! Seemed I needed some food in me. Today I am trying that again, but with a bagel and butter. So far its not working. I might have to whip out the white rice again today. I also noticed that it seems to come on at the same time. Yesterday it was around 10am and today it was just a little before that. I might try taking it in the mornings and seeing if that helps any.

Anyway, that is it for me. I have a meeting with the transplant team next Wednesday to go over everything so I will make sure to post what happens!

A Beautiful Fall Day for Pondering

2011-10-15T19:01:00.001-04:00

Today I sat out back watching my dog sniffing around and digging in the dirt. I was on the last step of the deck stairs, comfortably dressed in sweats and socks. The cool breeze felt wonderful on my face. I sat there admiring the leaves changing, thinking how pretty they looked against a steel gray sky. This is the reason I chose October for our wedding.

Then my mind drifted to how I felt physically. I took a somewhat deep breath (for me anyway) and let it out slowly. I could fill myself up, apparently halfway, according to the PFT machine. Inside I could feel the rumble of some mucus. Totally different than only a few days ago when I was crystal clear of goo. My exhale had a hint of crackles in it. I lasted a whole 4 days off of IVs before the mucus came back. But I don't mind. You see, I got over a week of clear, unobstructed airway inhaling. I didn't hear crackles, I didn't feel crackles, and my doctor said I sounded amazing. That was the best part. I sounded amazing! Me, going through a transplant evaluation sounding amazing! 50% of my airways were working. How awesome is that, and considering I don't think I have ever been above 80% it is REALLY amazing.

However, this 50% and the 50% I was at 3 years ago feel entirely different. How so I bet you are wondering? Well its not just a number. Yes, the number itself is important for many reasons, but it really doesn't paint a great picture of how you feel. The only thing that is similar is my coughing. This type of cough I have had forever. Sometimes it is mucus filled and other times it is entirely inflammation. But either way the cough is there. The differences are a much longer list....

Energy level - now I NEED 10 hours of sleep to function and not be miserable. Then I was sleeping 5 maybe 6 hours a night and functioning like a champ.

Lung pain - it was almost non-existent 3 years ago. Today I am always in some sort of lung pain. It varies from just barely there to OMG where is the Motrin.

Mucus - I used to rarely cough stuff up. It was there sometimes but it was very difficult to get it up. Now (notwithstanding this resent clean-out) I can cough up goo almost daily. Before green scared me. Now it is a color I am used to seeing.

Exercise - though I couldn't run a mile, I could dance all night long, with a few breaks for coughing fits and some rest. Now even the thought of dancing all night makes me want to sleep for a week! Also the need for O2 with exercise is new from this last 50%. Yes I did monitor my O2 and though I don't dip far I still go into the upper 80s, sometimes lower (like class on Tuesday when I walked in my O2 was 84% lol).

Travel - Loved it and it didn't bother me at all. I could travel all the time and I didn't need to rest up like I do now. It takes me a few days to recover from traveling now. Whether its plane, train or car I am exhausted after visiting family and friends. Mainly because of lack of sleep which is in point number 1.

So you see, I might be at 50% lung function right now, but I feel more like my baseline of 40%. I guess on October 26th we will see what I am at by then, as that is my follow up transplant appointment.

Ever Wonder When Up Might Turn Down?

2011-10-11T20:51:00.001-04:00

The past few days have been a whirlwind of ups.

Saturday we went to the venue and put the deposit down and officially picked our wedding date. It felt great to be able to make such a huge decision! Sunday we went to the Topsfield fair and I saw my afghan on display with a beautiful blue ribbon hanging from it. I won first prize in my crochet division. I was stoked! It totally made my day. Monday was my 31st birthday (yay for another year!), and my soon to be sister in law, niece and step daughter went wedding dress and bridesmaid dress shopping with me. We had a blast! I think I even found THE dress! We had margaritas afterwards to celebrate and they were delicious! That night I got an email from my college saying I had been officially accepted into the graduate program. I was floored and totally NOT expecting that! I was told I would need to take some classes and get more academic referrals in order to be accepted. So to receive that email totally took my breath away!

Then today the shocker! Yes there IS more....I hit 1.47L, or 50% with my FEV1. SAY WHAT?!?!?! Yeah that number is higher than I have had in like 3 whole years. Amazing for me! I feel fabulous and look great. Now I just have to hold on to that wonder number until I walk down the aisle.

Being the realist / pessimist that I am it makes me wonder when the downhill will start. It has to start at some time right? I can't go up and up and up can I?

Don't worry I am not sulking and waiting around for it to happen. I am thrilled with what HAS happened since it seems to me its been a while when so much has gone my way. I plan on finding a way to embrace my new found healthy numbers and live more.

I am very very pleased with this all!!!

I am OFFICIALLY a Graduate Student!

2011-10-10T21:04:00.000-04:00

Congratulations! You have been admitted to the School of Graduate Studies at Salem State University. Your acceptance is a tribute to your credentials and potential for success, and we hope you join our dynamic learning community.

Its OFFICIAL! How awesome is it to receive that on your 31st birthday :) fabulous present indeed! :)

Wedding Date Picked

2011-10-07T19:26:00.002-04:00

We picked the time, place and date! October 19th, 2012 at a great hotel right by us. It is going to be awesome! Tomorrow we go to put the deposit down and I have already signed the contract. I was giddy with excitement last night when we made the choice.

Now on to the details. My favorite part. And to celebrate my 31st birthday on Monday I am going dress shopping!!!!! Yay!

A Friend Needs Help with a Vest

2011-10-05T19:40:00.000-04:00

I may have blogged about this before I don't remember. A friend of my friend's has bronchiectasis and has a vest she has been using almost 3 years. This entire time she has been fighting with them to cover it. They refuse. Her doctor and social worker have sent letters to the insurance company explaining she needs it in order to breath. Their response: she has a husband who can do chest PT on her and therefore doesn't need the vest. As everyone knows, the vest allows us to have independence. We don't rely on someone else to do our chest PT. Insurance doesn't understand that.

If any of you know of foundations or organizations that can grant her money I would love to hear about them. Or if anyone has a vest they are no longer using and want to get rid of I am sure she would be willing to pay for the shipping. Please send me a face book message if you have any information that can help.

Thanks in advance!

Such is the Life of a Shitty Lung Patient

2011-09-29T08:00:00.000-04:00

There are days when I wonder why I am sitting in a hospital room getting tests done for a double lung transplant evaluation because I feel great. I feel like I could walk to China and back. Then there are moments when I go to the bathroom, walk out, start coughing and need 15 minutes of lying on my bed to calm down some, that make me realize why I am here. Its those moments, which are closer together now, that have put me in this spot. I may feel wonderful at 10am but at 5pm, after 3 treatments, I might want to rip these airbags out myself. Such is the life of a shitty lung patient...

New Video

2011-09-28T14:53:00.002-04:00

Just a video with me chatting on what has been happening in here. Enjoy!

You Know you Need a Transplant when...

2011-09-26T23:26:00.001-04:00

The x-ray tech says "wow you are sick aren't you?"

Then he proceeds to show you your scans and explain things. I was thrilled! I haven't seen my lungs in years! Holy whiteness! A bunch of spiderwebs all over and a big pocket of air in my tummy. He said I probably need a good burp (or a fart ha!). He was also very excited that I am here for the evaluation work up. He told me best of luck and he hopes I get many years out of this (you and me both!!!).

I had my right heart catherization this morning. I was expecting to be sedated at least slightly, but I got nothing. Only some meds to calm my lungs down so I didn't cough. In all honesty the procedure is not that bad, in hindsight of course. They numb your neck, drape it and put your legs up. You feel pressure, much like a picc insertion and I could hear the threading of the monitor. As soon as they stuck me to start, the water works started. I felt no pain but emotionally I must have been holding it in. Its the first time I have really cried since being told about the evaluation. I remember them calling out numbers and then I would have to breathe in, exhale and pause. So I can see why you can't be sedated at all, now. If they had told me that from the get go I would not have been so "ahhh" about it all.

That is the only test I had done today (besides chest x-ray and sinus ct scan), but tomorrow I will get everything else out of the way. I have started my IV meds already and hopefully will be home by Friday so I can get back to my fiance!

Fabulous Article About 3 Amazing Cysters

2011-09-16T08:08:00.001-04:00

The Fight of Their Lives

Check out that wonderful article. Its about 3 amazing Cysters and their lives with CF.

When you are done with that, check out Piper's Blog! She is featured in the article.

Doubling up my Transplant Stay

2011-09-15T21:31:00.001-04:00

Wednesday I had my follow up clinic appointment to see how the Levaquin worked on me. I went in all excited because I felt great! My SOB was down slightly, I knew I had gained a pound or two, I had a bit more energy. So I was expecting to see 40% at least! Imagine my surprise when my first blow was 34%, 1.01L!!! I was floored! My second attempt was 33% .98L. I was able to get 1.05L 36% on my 3rd try so I was just below where I was the visit before.

We decided to couple my transplant evaluation on the 26th-27th with the beginning of a clean out. So I will stay a few extra days to start the IVs then come home on them. I was already going to miss my 3rd grad class so I am not too put out by this. And when I show up with IVs in my arm, she won't be able to get mad ;)

So that is about it here. Nothing to really report. I do plan on doing a video from the hospital about the transplant tests and the stay so stay tuned in 2 weeks for some new YouTube postings.

10 Years but Never Forgotten

2011-09-11T00:00:00.000-04:00

For a few weeks now I have been wanting to write a post about today. It was such a defining moment in our lives. One that will forever live on in our hearts and minds. One that we will tell our children and grandchildren about. One when they say "do you remember where you were when the twin towers were hit?"

The answer I can give is:

At work. I was 20 years old and had just graduated from college that June. I was still working at my mail processing job while I waited for something in my field to come along. It was Tuesday which tended to be a slow mail day. I was sitting at the machine with my partner when one of the women came in and said one of the towers had been hit by a plane. My first thought was "wow what a bad pilot!". Then came the words I will never forget "the second tower was just hit". Then I knew it was NOT a bad pilot. Something was happening, something very bad.

We all stopped working and turned the radio on to listen. I don't remember much of the radio announcements or anything like that. I do remember one of the women running home to grab a TV so we could watch it. This was before smart phones and instant news feeds (BTW saying that makes me feel old). When she returned we sat back and watched. We watched as the feeds came in about the pentagon and flight 93 in PA.

Through all this I thought to myself that my brother needed to leave the country. He needed to sneak away to Canada to avoid being drafted because I knew that we would not just let this happen. I knew there would be a war. I am thankful there was no draft. I am thankful my brother stayed. Not that I wouldn't have supported him but as any sister would be, I was afraid he would die serving his country. Though a great honor, its still a loss.

Soon after we were dismissed and sent home. The rest of the day I sat on my sofa watching the news reports come in. As the towers began to fall I was in shock. You could see the people running away. See the dust and debris flowing like a tsunami on the war path. You could hear the screaming, the chaos, the terror in the voices of those reporting. NYC looked like a dust pile on the screen.

The images from that day are seared in my head. I can close my eyes now and see the metal standing up in the rubble. I can see the firemen walking on the debris. I can see President Bush standing there with his hard hat on giving a speech.

Afterwards, I decided to make a scrapbook with all the stuff I could get from papers. I even wrote a few pages out about what happened. Below is one part that to this day still tears me up:

"I will now go on to a much sadder note. Yes there is one. Think of all the children that were orphaned or lost a parent in a matter of one hour. I personally did not know anyone there but C knows a boy who might never see his father again. She told me how at school a boy was called to the principal's office from her class right after the second tower was hit. The boy was a trouble maker so the other kids teased him as he left. When he got to the office he was handed the phone. His father was on the other end. He had called to tell his little boy that he loved him and he didn't know what was happening. The boy returned to class to get his things and was greeted by the kids asking him what kind of trouble he had gotten into. The boy responded by saying his father was dying in the World Trade Center and he didn't know if he would see him again."

Here we are 10 years later, still fighting the war; Bin Laden is dead; Saddam is dead. Life has moved on, but the memories of that day will NEVER BE FORGOTTEN.

Happy and Exciting News!

2011-09-05T19:36:00.003-04:00

P and I are ENGAGED :)

He asked me Sunday night in bed. It was very sweet and very romantic. And I am the happiest girl in the world! I don't want to give details because they are special and intimate, but just know that I can't stop smiling.

Here is a picture of the ring! Now its time to plan a WEDDING!!!!!!!!! <3

Are You Being Listed?

2011-09-03T18:12:00.003-04:00

Hello readers! I need your help.

A friend of mine is about to be listed for her double lung transplant. She really wants to talk to some other people who are currently being listed, but not just evaluated. Her and I chat but I am still far away from the actual listing point.

If you are at this point and might want a new friend, send me a message via Facebook please. She and I will be grateful! <3

My Daddy

2011-08-28T15:50:00.001-04:00

My friend Josh over in Joshland wrote a very touching story about his father. It made me think of my daddy and some great memories I have of him. One in particular that stays with me and makes me smile is this one:

When I was in 7th grade my mom and her boyfriend at the time got job offers in Atlanta GA, which they decided to take. It was a new experience and we were going to pack up and move down south.

At this point in my life my parents had been divorced a good 10 years or so. Every other weekend my brother and I would go up to my dad's to visit. He would pick us up on Friday night and drop us off Sunday afternoons/evenings. I was a very shy child and since I didn't really grow up with my dad, I was nervous around him. I remember getting flowers on Friday nights from him, trying to bribe me so I wouldn't cry. There was a guy (he is still there too) that sold flowers out of a bucket right next to the train station. We would stop and he would get them for me. I think I loved my dad, but I wasn't really sure about him. I was 3 when my parents split up so I don't have any memories of him living with us. Given this history, what happened when we decided to move 800 miles south was shocking.

I remember it clearly. My dad dropped us off that Sunday night. I think it was to be the last weekend we spent with him until Christmas (when we came up and spent a week with him in Vermont). I remember the house, the green sofa next to the front door and sitting on the arm of it while we said good-bye. Then out of nowhere I started bawling my eyes out and telling him I didn't want to leave him. Much like in the movie the Patriot when Mel Gibson's little girl finally talks to him and starts sobbing for him to stay. That scene always makes me think of that melt down I had with my daddy. I can remember hugging him tight and crying. I was 12 and finally realized how much I did love my daddy. And since that point he has been my daddy through and through. I love him to pieces and can't imagine life without him.

We may not talk all the time, but I know he is there. I know if I needed anything he would be here.

Something Taboo - Death

2011-08-20T10:24:00.006-04:00

I wanted to write about something that most people seem to hate to talk about - Death. So many people are afraid to die, and based on their religious or spiritual beliefs, there are many reasons for this. So based on my beliefs I want to talk about it.

I must first warn against any religious conversations starting. Remember this is MY opinion and my beliefs. So please keep that in mind when reading through this blog post. And also, I am not anywhere near death it is just something I have been thinking about lately.

I am not scared at all to die. Rather, I am scared for those left behind.

When I pass away all my dreams, goals and desires will end. I will have no regrets as I won't know anything after the time my body takes its last breath. However, those left behind will feel the sorrow, the pain, the shattered hopes. They will know I didn't do what I wanted or that I never got to see things I wanted to. They will live with the regrets, if they do, not me.

My niece and nephew will remember me and the times we shared together, but will it be enough? Will they regret that I didn't live closer and spent more time with them? Will they be mad I passed away.

I like to think each and everyone of us goes to Heaven and can look down on those we left behind, but I don't think it is an actuality. I know that sounds crazy. Believing they are watching over relieves some of the pain. Believing I will see my grandparents, Maggie and friends after I pass is something that makes me smile. But I don't think that happens. If it did, then wouldn't I have regrets? Wouldn't I be sad watching over my niece and nephew, not being a part of their lives anymore? So while I like to think it does happen, I also don't want to think it does. Because then, my regrets can continue, my sadness over not being with my family long enough will be stronger, and I may continue that depression from earth into heaven.

So instead I think that when we die, we die. Maybe our souls float away and go somewhere that the rest of the souls are. But maybe we don't have any idea what or who we were. Maybe we are just a bunch of old souls hanging around, waiting to be placed in a new body. I have no idea. And now my post has gone totally off track lol.

So to end this little off course ramble...To me death is an end a total end for the deceased, while the survivors must carry on, remembering the good and bad of the deceased. Death is "easy" for the one who passes.....

Clinic Appointment

2011-08-10T13:06:00.007-04:00

As I thought my FEV1 dropped some. Not as bad as I had been expecting, but then again it was only 3 hours post treatment and 10am. My weight is down 5 pounds, which was to be expected from the hysterectomy. My FEV1 is around 36% which is down from 43% last time. Certainly not the lowest I have been, but down from baseline.

The course is to do 2 weeks of oral Levaquin and see how I feel after that. My next appointment is on September 9th, but she said if I get back from my vacations and nothing has changed, I don't feel any better, then to call Tuesday after Labor Day and they will set me up in a room to start IVs. So I am hoping I get some relief from the orals so I can make sure I am able to get to my first grad school class on September 13th! And then to my overnight evaluation on September 26th (I was able to schedule it for 2 weeks later since it would have interfered with my first class).

Here are 2 pictures from today's appointment:

The first picture shows my numbers for the past year. You can see how much I fluctuate. The second picture shows my fluctuations on a graph, which really shows how I am.

Some relief please!

2011-08-06T22:05:00.002-04:00

This Wednesday is my clinic appointment and I am looking forward to it like no other. I think I am due for some IV antibiotics. Going into my surgery I was healthy and I am glad I was where I was. But coming out on this side, I just can't recover those days where I couldn't cough much and it pooled in my lungs. I am curious to see just what my FEV1 has dipped to.

The shortness of breath is bad. The need for at least 3 treatments a day is strong. And my energy is non-existent. This past Friday I had my 3rd dance lesson and I coughed the whole time. I actually had to explain to my instructor I have a lung disease and that I am not contagious, nor about to keel over (we hope lol). About 30 minutes into the 45 minute session I was done, but I forced myself to complete it and then passed out on P around 7pm for a quick power nap. Literally I was laying on his arm lol.

Today we went car shopping and it completely drained me. And we only visited 2 lots! Happy to say the second lot we purchased a vehicle (Mazda CX-7). So we had to hang around to do all the paperwork. I was just so tired I could have curled up on a bench and slept for hours.

I will be sure to post an update on Wednesday after my appointment!

My First Transplant Appointment

2011-08-03T21:35:00.000-04:00

Today was surreal, but not really an emotional day for me.

When we first walked into the clinic and I saw the “Lung Transplant” sign on the wall I got that burning sensation in my eyes that I might cry. But I blinked them back and proceeded to check in. Because I had quite the entourage with me, P and I stayed in the lung transplant waiting room (I was masked up) while my family stayed in the adjoining one.

Right around noon I was told I was going to need to leave the clinic because there was an emergency appointment coming in and we were infectious to each other. She took my number down and we all went to lunch in the café. We were able to return to the clinic around 1pm and were lead into the viewing room to watch a 30 minute video on lung transplants at B&W. It was very informative for my family, and somewhat for me. A lot of the stuff they talk about I am blessed to know already from my extensive online support community. When the video was over we all headed into the waiting room, together since we were the only ones in there at that point. I got a nice surprise then!

A woman who had been in there earlier, also wearing a mask, came over and said I looked familiar. Turns out she reads this blog! So hellooooooooooo!!!!! ***waves energetically*** It was really nice to meet one of my readers that I am not familiar with. It made me feel really great that people out there do read my stuff.

The rest of the appointment was just a physical exam followed by a question session. We went over my history and the Lynch Syndrome issue. I have been cleared for a transplant, as far as they are willing to do it. Apparently I have been the talk of the conference room for a few weeks trying to decide if I was too high a risk to be a recipient! This could be a fun yet scary experience, being the first here to have a double lung transplant while also dealing with a high risk probability for cancer. After chatting we decided to proceed with the evaluation process. On September 12^th I will be admitted for my overnight stay and get a majority of the testing done. Some of the follow up tests like dental exams will obviously need to be done outside of the hospital. Luckily I don’t need pap smears or pregnancy tests though.

It was nice to get in and get things rolling. They are aware that I don’t feel I am in need of being listed as of right now but that I do want to start the ball so that if I get sick fast I am not struggling. They agree completely with my choice too.

Since I have officially started the transplant evaluation process, be sure to look for more updates and YouTube videos.

Blogger Challenge!!

2011-07-28T20:39:00.006-04:00

A great bloggy friend posted a challenge for us fighting chronic illnesses. So here is my challenge response:

I think that our generation - the 20+ year olds - with CF have it much different than the "newbies" being born today. Our parents weren't aware of as much, there wasn't as much known, the medications were different, the treatments were different, things were just plain different. However, we are still here, living, getting older, having babies and transplants. So somewhere along the lines our care transitioned over to the "new" care, but did it happen in time?

When I was younger I was beat on by my mom. I know I was supposed to do Albuterol with .09% saline as my nebulized treatment. I ran around like any normal kid did, only I coughed and hacked the whole time. And I ate like a pig. But my lung function was never high. Looking over my chart I have never been above 80% and really I don't even know if I made it that high. As far back as I can remember, being in the upper 50s was my thing. Maybe I would have been higher if I had been more compliant as a teen. But as my friend mentioned in her post, when you don't notice a difference its hard to continue on.

My medications didn't make me feel better. If anything they made me feel worse. I got shaky and coughed - which at the time I despised! I wanted that "normal" teenage life. I got better as I got older, especially after my first hospitalization at age 18. But I didn't truly become compliant until my mid-twenties. Then I discovered how hard life was without my medications. Compliance wasn't so much about helping my lungs live longer, it became helping me to breathe and live my life.

I sometimes wonder if I had taken all my medications the way I was supposed to from diagnosis on, would I be facing a transplant evaluation? Or would I still be working full time and pushing myself just as hard? I will never know, but I do know I don't regret one thing I did, or did not do. I lived those years of my life as I wanted. I complied with myself. If that sends the doctors to say no you can't be transplanted then I will deal with that. But I doubt it would. I am compliant now. I do my nebs, I take my pills, I do my vest and I exercise when I have the energy. I cough up the goo when I need to. I go on IVs when I need them. I listen and I am proactive. I have changed. People can change.

Diseases are very unpredictable. They can change at the drop of a hat. They make their own rules and they don't listen when they are screamed it. If someone does what they are supposed to do 24/7 they are still going to face the "true" disease. Maybe it will be pushed back a few years or maybe it won't. But no one knows that at the start. No one knows what their life is going to be - terminal illness or not. Should you be compliant? YES. But you need to figure out what compliance means to YOU. Do you allow yourself to miss a treatment here and there because of life? That's fine. Do you skip treatments daily and probably only do a few during the week? That's not fine - that's not compliance. Compliance is doing the best you can.

Now I pass the challenge torch on to my bloggy friends. Here are the "rules":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

My Pathology Report

2011-07-21T11:39:00.006-04:00

I am so glad I am not a doctor because the language used is mind boggling!

My incisions are healing up nicely. They don't look bad and they are so tiny you will barely be able to see them when I am all healed!

There were only 4 issues found out of the 6 organs removed. Really not too bad and 2 were nothing to be concerned about.

On my cervix was some metaplasia which I have had before. It can lead to dysplasia which are pre-cancerous changes. I have gone through all those procedures when I was found to have dysplasia about 5-6 years ago. Again nothing to worry about, but I am thankful my cervix is gone.

On my right Fallopian tube they found a few peritubal adhesions. Basically little polyps on the outside of the tubes. They were found to be benign thankfully. Reading up on those adhesions I found they can lead to infertility so I wonder if I would have been able to have babies without CF and LS forcing me to make the decision to remove the baby making parts.

On my right ovary again they found cysts, which have not gone away from my ultrasound in December. That's 7 months of hiding out and again I am thankful it was removed. The cysts were benign as well.

Then on to the uterus where it showed I had endometriosis. Apparently it has never given me issues.

Seems that taking out my baby making parts was a good idea. Who knows if any of these polyps would have turned cancerous...or if given what was found, if I ever would have gotten pregnant...

My second video on YouTube all about Lynch Syndrome and my choice to have this done:

Lynch Syndrome Video

EDIT:

I spoke with a friend of mine tonight who is a nurse and she went over the report with me thoroughly. The doc just pointed out the issues they found. Turns out those lower back cramps I had with every cycle, was the endometriosis! I had adhesions on the back of my uterus that were pulled during my cycle and caused the cramping. She asked if I had lower back pain and showed me where and it was like I was pointing to my own back! So I did have issues but never thought much of them. She also said that I was raked with scar tissue on my insides. Basically it seems like my organs where all over the place and stuck with scar tissue, like a huge cobweb! And that one ovary was connected to my bowel. I'm kind of intrigued and would have loved to see what I looked like. Gross and disgusting yes, but pretty nifty too!!!

I Get So Emotional Baby....

2011-07-20T21:04:00.007-04:00

What do you get when you take a woman's reproductive organs out?

A crying, antsy, moody, unstable Amy.

I think I have my period....I mean I think my body thinks I have my period. Stupid shit has made me cry all day today. I have been moody and craving the things that I normally crave around my time of the month....and I can't stop crying.

Tomorrow is my first follow up appointment and you know I will be blogging about it. Hopefully we can chat about some hormone therapy to wean me down to menopause.

Till then I must avoid baby pictures, animal pictures, and anything that is remotely happy (like a friend blogging about dancing at her cousin's wedding - yes you know who you are; or another friend blogging about meeting said other friend - again yeah you know who).

My First Video Blog!

2011-07-19T16:50:00.003-04:00

Here is my very first video. I apologize for saying "um" so many times. Drives me crazy when I do it so hopefully next time I get better. I have uploaded it to YouTube as well.

Enjoy!

YouTube

2011-07-18T17:39:00.003-04:00

My new YouTube Channel

I haven't uploaded any videos yet but I plan on doing a few over the next few months. I want to get ideas of what to talk about. So I am opening up the "blog lines" to my readers to ask what YOU want to see me talking about.

It can be anything from a Q&A session about CF, to how to start a crochet scarf. You let me know and I will post my first video sometime next week!

Recovery

2011-07-14T21:52:00.007-04:00

Not gonna lie...recovering has been a bit rough. Easy compared to some I am sure, but considering this is my first real surgery, its taken its toll on me.

Pain has not been a big issue around the surgical site. Pain in my right shoulder has been abysmal! Sunday I woke up thinking I slept on my arm funny then was reminded that shoulder pain is to be expected from being pumped full of CO2 for surgery. By Sunday night I was in tears and Peter had to run to the store to get me a heating pad. It was horrific! I was taking pain meds solely for the purpose of helping my shoulder. Monday I called the doctor and asked if there was anything I could do and they told me time. The CO2 has to be reabsorbed back into your body, through muscle mass (of which I am lacking). So they said it could take a few days. Well here it is 5 days later and though I can move my arm, it is not without help from the left arm. From the elbow up my arm is practically dead. I can move with some pain but only if I push it around with the other arm. Otherwise is just sits there. Almost like it lost the connection, very strange.

Now that a week has passed and I have gotten my uvula to shrink (well I didn't but mother nature decided to give me a break) I am able to cough without fear of throwing up. Only now I cough incessantly! Quite annoying I tell you. I will pop up from full sleep to a major coughing fit that lasts for 15 minutes or more. These fits are happening at least 6-7 times a day. They never result in anything coming up (mucus or food lol) but leave me totally winded and exhausted. And the coughing is killing my arm as well. I am a mess! On top of that for the first time in my life I CAN NOT sleep in my regular sleeping position. Usually I have 2 pillows and it elevates me enough. Now I have a big pillow from the sofa propping me up so I am elevated from the lower back up. Its comfortable for a bit, like a recliner, but after 8 days I just want to sleep on my side again!

Other than those issues I seem to be healing well. I am exhausted, and frustrated that I can't do much thanks to my arm. Though even with the arm working, there really isn't much I can do. Laundry is too much stretching, food shopping is heavy, I can't drive yet because of still being on pain pills, cooking is fine but I need to be creative with what we have because I can't get to the store. Luckily we are going shopping this weekend and I can stock up for the next couple of weeks.

I see the surgeon the end of next week and she will let me know if they found anything funky in my discarded organs. I wonder when the reality of what I did will sink in? It hasn't hit me that I TRULY CAN NEVER have babies of my own, EVER. Even after I was asked how far along I was (yes someone thought I was pregnant thanks to a slight bloat and asked me how far along I was in my pregnancy), it didn't really phase me much. Maybe in a few months, once my body realizes it can't produce children anymore...

101 Things to do in 1001 Days

2011-07-09T21:00:00.000-04:00

These are the ones I have not yet completed:

1. Pay off credit card debt

2. See a show on Broadway

7. Take a cooking class

8. Start riding horses again

10. Have the short story published

14. Take my jeep “muddin”

15. Take a Caribbean vacation

17. Get a professional massage

19. Have dinner with my dad and step mom once a month or every 6 weeks

23. Do volunteer work

26. Make homemade Christmas presents one year for everyone

27. Paint a picture

28. Do saline rinses religiously

30. Go to the movies once a month

32. Spend a night under the stars

36. Win a Halloween costume contest

37. Make candles from scratch

38. Buy a mountain bike and actually USE it

40. Go on a super romantic dinner

41. Display my Lenox crystal animals in something other than a moving box

42. Visit all 50 states (37/50)

43. Spend a day at the spa and not worry about price!

44. Go tubing down the Delaware

47. Make chicken noodle soup from scratch

49. Take an Italian class

50. Take a writing class

51. Visit Williamsburg VA and Gettysburg PA

54. Wish on a shooting star

59. Pick my own strawberries

60. Visit Times Square for Christmas

61. Go to Vegas

65. Eat more organic foods

67. Take NCIDQ exam...and pass!

70. Make a will

71. Do a scavenger hunt

72. Throw a surprise party for a family member or friend

73. Spend an entire weekend in bed/on the sofa (not sick)

75. Go ice skating

76. Go roller skating

77. Play volleyball

79. Spend more time with friends’ kiddies

80. Go to First Friday in Philly

81. Take a flying lesson

83. Finish Christmas shopping before December 1st

88. Buy more organic products

89. Throw a Halloween party

91. Get teeth whitened

94. Have a yard sale

95. Work on self esteem

96. Watch entire Disney animated movies collection

97. Curse less

98. Plant a tree

101. Celebrate completing 101 things in 1001 days!

DONE:

#3. Make friends with people I wouldn’t normally be friends with. Sounds kind of mean but I am very picky about my friends. I changed that. With facebook it is much easier to be friends with people. I am not quite the social butterfly I was 10 years ago so having the computer makes it easier for me.

#4. Create a scrapbook. I made two this past year. One for a friend who lost her husband and another for my dad for a Christmas present.

#5. Print out all my pictures I have on my computer (that are worthy of printing). Done! 834 pictures later I got them all delivered.

#6 – Get computer working again so it reads CDs. This one was pretty easy. I only needed a new cd drive which I installed myself. Thanks to Kevin, I didn’t have to call anyone to get it set up for me and try to figure this all out.

#9 – Write a short story. I had begun writing a story when I was in school and I took a few extra days to finish it and make some changes. It is not entirely done and not ready to be sent to anyone yet, but it is done, it just needs tweaking.

#11 – Finish at least one book a month (33/33). I have read way more than this. I adore reading.

#12 – Take another history class. Finished my World History class with an A and starting Grad school in September hopefully!

#13 – Get a sleep study done for O2. Had the sleep study done, but "failed" it since I had just finished IVs. So we did it again while inpatient and I passed LOL.

#16 – Do the tourist thing in Philly. A friend of mine and I went to see the Liberty Bell and the Constitution when we were in Philly for the Princess Diana exhibit. It was great to FINALLY see the bell!

#18 – See my nephew more often. Though I don’t live nearby anymore, I make a point to spend as much time as I can with my nephew and now niece as I can when I am down visiting the family.

#20 – Donate all my old books to the library. This one was a help to me too! When I was packing to move I just put the books I didn’t want into a different box. Julie, my old roommate took them to the library by her work. She had some old books she wanted to take too.

#21 – Get all my pants hemmed. I am short, this is a known fact. And short people have a hard time buying pants that fit. Even with my 3 inch heels I was still walking on my pant legs. I finally gave in and dropped them off at the cleaners. A week and $80 later I now have pants for work that actually fit me!!!

#22 – Get a CF tattoo http://mycfjourney.blogspot.com/2009/11/my-new-cf-tattoo.html

#24 – Get rid of old junk. Did a whole lot of this when I moved and again when I have been up here. I enjoying throwing away old crap and decreasing the clutter.

#25 – Start exercising more. I may not be a runner now but I have at least started some exercising and I am working on getting into a better routine.

#29 – Delete old files off my computer. This one only got done because I was without the internet for 3 weeks!! I deleted all my old files and programs that I never use. I have a lot more space now!!

#31 – Smile at a stranger at least once a day. I try to do this when I go out. I don’t go out every day so obviously I can’t do this daily, but it is very rare that I go out and don’t smile at someone.

#33 – Go camping. We are going in August so I do miss the cut off but we are going so I am counting it.

#34 – Learn to knit/crochet. I can crochet like a fool! The knitting I need to learn at some point and I will. Right now I really enjoy the crocheting and I have so many projects that I am doing so it is hard to start a whole new way to do things.

#35 – Go to Disney World. Well I kind of cheated on this one haha! I wrote it in knowing I was going to go. Shhhh don’t tell!!

#39 – Back up all my blogs. Did it! Took a while to get them all copied but it is done! And now I write my blog in the file and then copy it to my BlogSpot. See worked well!!!

#45 – Learn to drive a wave runner. Peter and I rented a jet ski while on vacation and he let me drive for a bit! It was so much fun and by the end I finally figured out how to turn without slowing down so much lol.

#46 – Get a colonoscopy. I have had 2 now so I think I make it. Luckily I have had them done considering I have had polyps removed both times.

#48 – Make an edible beef stew. I nailed this one!

#52 – Learn to cook things other than chicken and rice. Peter will say I have got this down pat.

#53 – Start going back to church. We go on holidays, does that count?

#55 – Stay off of lung transplant list (active list). So far so good.

#56 – Celebrate 30th birthday with HUGE party http://mycfjourney.blogspot.com/2010/09/surprise.html

#57 – Send Holiday cards to family and friends. I do this every year now and I love it!

#58 – Update address book. All done!

#62 – Start doing Pilates/Yoga again. Tried Yoga and do not like it. Did Pilates a few times and it just doesn’t work for me. I get nauseous with all the bending and stretching. Not exactly productive exercise.

#63 – Date more and not be so darn picky about dates. Ironically a year after I wrote this I found my match. I dated a few times prior but I was never really one to date a bunch.

#64 – Keep a private, paper journal. I have one. I might not use it all that often but I do have it. I tend to use my blog for most of my thoughts, unless they are super emotional then I use my paper journal.

#66 – Visit grandparents’ graves. I have. Now it’s a bit hard since I am 300 miles away. But I have done it since I wrote this list.

#68 – Become a member of ASID http://mycfjourney.blogspot.com/2009/01/asid.html

#69 – Save money. I got me a savings account with some dough in it.

#74 – Recruit more people to be organ donors. 2 people that I know of have changed their minds and signed up to be donors. It’s a start!

#78 – Stop working so much. Pretty sure going on SSDI counts for this one.

#84 – Go on a picnic. After the parade on the 4^th we went to the park and had a BBQ with friends while we waited for the fireworks. It may not be a picnic basket and checkered blanket but it’s a picnic!

#85 – Learn to ballroom dance. http://mycfjourney.blogspot.com/2011/06/no-one-puts-baby-in-corner.html

#86 – Bake homemade banana bread. The bread didn’t turn out too great but it was still good. Very heavy. I must find a lighter recipe….if one exists.

#87 – Recycle more. I even have Peter and his daughter recycling now. Go Me!

#82 – Actually go Christmas shopping on Black Friday. Yes I braved the stores and went shopping on Friday. I was going to go at 5am, but I was still too tired. Now I am glad I didn’t since I heard of a few deaths caused by trampling!!! OMG WTF?!?! I almost had #83 (finish shopping before December 1st) but I have a few more people to get and I know that won’t happen tomorrow. Next Year!!!! That was 2009 and I braved the stores AGAIN in 2010 while on IVs! That’s bravery lol.

#90 – Start birth control. Had a hysterectomy on July 6^th so I am pretty sure that counts.

#92 – Meet more online friends in person. I may just have more online friends here in Boston than I do “RL” friends! We meet up quite often for doc appointments at the Brig.

#93 – Be more feminine (i.e. more necklaces and earrings) for work. Well while I was working I was able to dress all snazzy, now that I don’t work I just lounge in sweats a lot. But I do dress up when we go out on the town!

#99 – Do a random act of kindness. I can’t think of any off the top of my head, but its been 2.5 years and if I didn’t do this then my sorry ass is headed to hell in a hand basket!

#100 – Meet the man of my dreams. You all know I mastered this one ;)

Made it!

2011-07-07T19:05:00.003-04:00

Surgery is over! I have 3 tiny holes in my abdomen and a bunch of needle marks in my arms lol. All went well though. I am learning to cough without feeling like I am going to open things up. I tried holding a pillow there and it hurt more than helped. Right now I am coughing up dark greenish/grey cement. But that will slowly go away as I clear it all out. Its hard to cough up stuff without gagging since my uvula is swollen and when I cough stuff up it gets stuck on it (OMFG EWWWW). I had the nurses give me 1000 cc's of saline over night because of how thick the mucus was. It is slightly thinner now and again will diminish as I drink more and get more up. Overall I don't hurt that much. The bloated belly from the gas hurts more in my opinion, and the incision areas itch like crazy. It feels like I have a horrible case of PMS cramps.

My biggest obstacle is passing gas. I have a few times but I have to keep on it. Things are all moved around and out of sorts in that area so its all a re-learning game to me.

I have to monitor my oxygen and temperature and call if anything gets too low or too high.

That's about it! I am on pain meds and they make me sleepy so I am trying to only take them at night and stick with the 600mgs of Motrin when I am awake. Though I am sleeping a bunch especially after walking a bit.

I shall check back in a few days and let you all know how I am feeling!

Surgery Time!

2011-07-05T21:35:00.002-04:00

My surgery is scheduled tomorrow for 9:30am. I will update my blog when I get back home :)

I admit I am nervous and scared. This will be the first time I am vented and under general anesthesia. It is also the first time I will need pain medication. Again I am nervous about that too.

Prayers and good vibes would be appreciated tomorrow!!! Thanks :)

A Week in Wildwood NJ

2011-07-03T12:13:00.004-04:00

My family and I (P and E included) had an absolutely amazing time down the shore in Wildwood. They have a huge boardwalk with 3 piers full of rides and games, a ginormous beach with a rubber walkway halfway down to the ocean so you can walk better, and we were 2 houses down from the boardwalk so getting there and to the beach was a breeze! The best part was spending 5 days with my niece and nephew. When I went to bed they were there and when I woke up they were there. I couldn't have asked for anything better.

We spent Monday at the beach. E, J and my mom had gotten new boogie boards that morning so they all brought them down. P and I decided to take a swim (ok he convinced me as I haven't been in the ocean in years past my lower calves). HOLY SMOKES! The ocean can wear you out faster than anything else! I made it out a little ways and had to go back in I was exhausted. We were out to our lower bellies (on me) before I got tired from jumping the waves. So I went back and laid down to read for like an hour. After that we did it again. We got much farther out and rode some waves. Then P had to lug me back in as I was totally done. Even kicking wasn't going to happen. My mom and aunt said when I walked out of the ocean I looked like I was going to drop dead. There was no color in my face at all and I was staggering. Scary to think what the waves can do to someone at this stage of CF. After that I again laid down and read some more till we all went back to the house.

Monday night was our big trip to the boardwalk. Everyone was riding rides and playing games. I stayed down with my niece when everyone would go on the roller coasters. J and E did a bunch of the kiddie rides when E wasn't on the adult roller coasters! My mom's boyfriend went to find a bar as he isn't a huge rides fan, and then a bit later P decided to catch up with him for a drink then meet us back on the pier. Well we eventually left and my mom called her BF to tell to him to tell P to meet us on the 2nd pier. P wasn't with him. So I went back to the pier to look for him. I must have missed him on the tram car (they have a tram that goes up and down the mile long boardwalk and P said he had hopped on so I must have missed him walking past it) because he was no where to be found. I headed back to the 2nd pier and as I did so I saw an ambulance and fire truck with their lights on. It made my head think and I started to get all teary eyed. By the time I found the rest of them I was full on crying and couldn't stop. I did this for the next hour. I was having fun and taking pictures but I couldn't stop crying. Eventually we went back to the house and P was there. Oh also he and I had left our phones at the house so we couldn't call each other). I was so worried I lost him lol. At least I know just how much I love him and got a glimpse of what would happen if I ever really lost him.

The rest of the week was great too. Wednesday P and I went para sailing and jet skiing!!! We were 375 feet above the water! I held on for dear life! I get motion sick and we were the last couple to go up so by the time we did, I was green and ready to hurl all over the place. Luckily I was able to keep it down but for the rest of the day I was a bit nauseous.

After that we met up with my sister in law and the kids at the water park. It was my first time at one and we had a blast! I actually climbed the steps up to slide down! 94 steps holy moley! I did it 5 times over 3 hours lol. There are different levels so I would stop at each one and take a few breathers for a minute or two. And I walked very slow up the steps, letting people pass me. The lines were super tiny so I wasn't worried about that part. Though a long line might have been better on the lungs!

We definitely had a great time and I am so glad we got to go. I am looking forward to our family camping adventure the end of August.

20cm is HUGE!

2011-06-23T17:07:00.002-04:00

When you hear centimeters you don't think of something being large. At least I don't. So when I heard that the polyp removed from my colon was 20cm I just said oh ok. She said it was big but I never thought it was THAT big!

20cm = 7.87inches!!!!!!!

Yeah something THAT large was sitting in my colon! Luckily it was benign.....

2 doc appointments rolled into 1 post

2011-06-22T12:48:00.006-04:00

Clinic went really well for me! I lost a few points on the FEV1 scale but that is to be expected. Nothing significant though. I was 1.28L last visit and 1.22L this visit. Perfectly OK. Which means I am signed off and ready for surgery on the 6th! Pre-op is tomorrow morning where they are just doing some blood work. Then we leave for vacation on Sunday, get home Thursday night, Celebrate the 4th of July that weekend then Tuesday is prep and Wednesday I say bye bye to my lady parts.

She talked to one of the transplant doctors for me to find out about the Lynch Syndrome and being transplanted. They told her that it won't automatically disqualify me from being listed as long as I am diligent about screenings, which of course I have been. I have enough on my plate without developing cancer. I was glad she asked that since it was one of my questions for them on August 3rd. I will still be asking them questions about it but at least now I know going into it they aren't going to tell me to go home.

Last week I had an ultrasound done on my thyroid to check the nodules that were found on the CT scan. There is one on the left side of my thyroid which is super small and of no significance so that one they left alone. However, the one on the right side was larger than they like (anything above 1.5cm they biopsy and mine was 1.9cm) so they did a biopsy. Very strange procedure. First they numb the spot with lido-cane so you can't feel the needles being plunged into your throat. Then they take 3 samples with needles. Doesn't hurt at all but it feels so weird having someone deliberately pushing on your throat. Afterwards you have a small pinprick on your neck which I dubbed my one toothed vampire bite.

I knew something wasn't right with the nodules when the tech came back in to re-measure the nodule after showing the results to the radiologist (which is normal to do). Then my new thyroid doctor came in to explain everything to me. She also showed me the lump. It feels like a raisin in my throat haha! You can only feel it when I am swallowing thankfully. She said 90% of these come back as nothing and they just monitor the nodule to make sure it doesn't grow. But if it does come back cancer it is very easy to cure. No chemo, no radiation, just remove the thyroid and you are good to go. I am supposed to hear the results today so fingers crossed it is just a weird growth like all the rest of my body likes to do. I swear I am a growing field for nodules and polyps!

I also added 2 more doctor appointments to my already swamped summer. I need another CT scan done in August and I have my next clinic appointment on August 10th, the week after the transplant clinic. She was very excited about my stability this past month and said she feels, as do I, that I will be good through the summer. We both knocked on wood! One of my main focuses for the next month is to make sure to stick with my airway clearance and moving around. Especially post surgery. Coughing is going to be painful for a bit afterwards, but I can't let my lungs fill up with goo. If I start to feel crappy before my appointment I am to call right away. She trusts the doctor doing my hysterectomy though, since she did another of her patients last year. So that made me feel better as well. I was already trusting of her since she had mentioned the previous CF hysterectomy to me on my initial appointment, so I am glad it turned out to be my CF doctor's patient.

All in all I am stable and looking forward to a VERY busy summer with doctor appointments and vacations!

EDIT: Biopsy results are in and they were normal! I am not a cancer mine ;)

In need of a Kidney Transplant - For a Friend

2011-06-16T07:03:00.003-04:00

A friend in the CF world needs a new Kidney. At first they thought her sister was a perfect match but turns out she might not be able to help after all. They are in the NYC area. If you would be at all interested in donating please contact me via facebook and I will pass your message on to her.

A New Puppy

2011-06-13T22:59:00.004-04:00

We have been talking about getting a puppy for a long time. Now it looks like it will be this summer for sure. I am really excited to have a puppy to play with and force me to get out and walk.

BUT......

I am scared to love another puppy and go through what I went through with Maggie. Maybe I am overly emotional about it but I still well up with tears just thinking about her. She was my whole life. I feel like I lost a part of me when I had to put her down. And now I am opening myself up to pain like that again.

I know it will not be the same. She (P wants a female) will be the family dog and not just my sole companion. But I will be with her the most. I am home all day. I will be the one walking her, picking up her pooh, and taking her for her shots etc.

I am excited for the chance to love a pet again like her, but I am scared shitless. That was the WORST pain I have ever felt and I have lost friends, grandparents and a step mom.

I will be sure to post pictures when we do adopt her. I have my eye on a cutie as we speak...

No one puts Baby in the corner!

2011-06-09T19:34:00.003-04:00

Today I had my first ballroom dancing lesson. Can I just say I wish I had started years ago! It was a lot of fun. My biggest obstacle is not my lungs, but my control freak issues. I have to get used to a man leading me around the dance floor. We all know I am super independent so this will be the hardest part for me to master. But once I just relaxed, concentrated on the steps and the music I did really well. It helped my instructor was really good too.

I signed up for 5 more lessons which I can space out. That is nice since I have surgery July 6th and a bunch of vacations. I will get one more lesson in before we leave for vacation, and also before the deadline for the 101 things to do in 1001 days. Then the last 4 lessons I can space out at my convenience.

Lung wise I did better than I had expected. I didn't cough much, just a few "fake" coughs to get rid of the feeling. Once I was done and outside I let the hurricane of coughing start. It was a very good workout and I can tell my hips, lower back and arms will be hurting tomorrow!

One of my favorite movies is Dirty Dancing and I felt like Baby when she was learning to dance for the hotel performance. Even as I sit here and practice holding my arms correctly; shoulders down, head up, elbows up, arms stiff; I feel like her. And remember, NO ONE PUTS BABY IN THE CORNER!

Lack of O2 Makes Ya Think!

2011-06-06T20:14:00.007-04:00

Today I exercised more than I have in a while. Real exercise, not the cleaning, laundry and food shopping that I tell myself is real (well the docs say it isn't but they should have 40% lung function then tell me that). Today I walked around the lake in my town. NOT the whole lake because that is like 2 miles or something like that, but about 1/4 of a mile I would say. Not too bad. I tried it at a brisk pace too. 5 songs on my iPod later and I was back at my car...huffing and puffing and hurting. My head was throbbing!!! On a good note I was able to cough up quite a lot of goo! Bree would have been proud.

The reason for the headache? 86% O2 stats the whole walk. I didn't use my O2 and I really should have. But I have yet to use it in real public yet. I've used it on the train when T and I were traveling to PA, so I could sleep. But nothing else. Now it seems I really MUST take it with me. But can I whine and say I don't wannaaaaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!! Looks like a trip to REI or someplace like it is in order so I can get me a back pack to hold my portable concentrator. I don't think pulling the wheelie cart would work well and it's just too heavy to have on one shoulder for half an hour of exercise. I have Phillips EverGo if any of you have any ideas you want to share with me on back pack ideas!

So why did this all make me think you ask? Well as we all know it is very important to do your best thinking with less O2 in your blood than normal. Makes everything seems so much better right? Sensing the sarcasm yet? Well if not then look closer :)

After catching my breath and getting my O2 back to normal I sat in my Jeep. I sat there contemplating my upcoming transplant appointment. I found myself both excited and sad. Excited because I will be able to breathe for once, and sad because I need to get new lungs in order to breathe better. It truly is a bittersweet surgery.

Again you may be shaking your head and repeating that my FEV1 is decent. Most people I know waiting for lungs or doing the evaluation would kill for 40%. Me I don't feel like 40%. Most days I feel much lower. Inflammation and tightness are my issues, along with no inhaled or oral antibiotics to keep things at bay. Add into it my desatting with exertion and its a little clearer why I am going. 3 months ago when she first brought it up I thought for sure that I would not have to start the evaluation process yet. Now I wonder if it might be a good idea to do soon. Not so much because I NEED the lungs like yesterday, but because I can tell I will be a fast slider. Though I have been consistent and fairly slow since high school, the deterioration over the past 2-3 years has been much greater than the whole of the prior 10 years. I'm running out of coal for the fires...

My body is just tired.

Cystic Dreams Fund

2011-06-01T11:13:00.002-04:00

Cystic Dreams

Everyone should check out this awesome site!

From one of the CDF supporters:

Many of you already know about the Cystic Dreams Fund, created in memory of Paul Mooney (aka "Q" or "Quoof" on here.) Because of this fund, part of Paul's legacy will be to financially help adults with CF. Eventually (soon, hopefully!) we be giving out grants to help adults with CF with their numerous expenses.

Those of us involved with the fund want adults with CF everywhere to know about this opportunity. So if you aren't already a fan, please visit our Facebook page and become one. My soap-making partner and I are giving 20% of our profits to the CDF this month. As part of our final push to gain more facebook fans and exposure for the CDF, we are having a raffle for a bar of soap. If you go to the CDF facebook page, become a fan, and then refer a friend or two, you are eligible to win. (Be sure to click "like" on the thread about this.)

Thank you for your support and for helping to spread the word to cystics in need!

Saying Goodbye... (edited)

2011-05-29T22:28:00.035-04:00

Saturday was Bree's Celebration of life. And a celebration it was. There were so many people there! Such a testament to what an amazing person she was.

I met her sister first. I told her who I was and that I was there to show the family our support from all of the online friends Bree made, and who couldn't be there themselves. She asked me where I was from to which I obviously replied Boston, MA. She got this look of pure wonder on her face and started crying. She gave me a huge hug and told me should was so thankful I came this far for them. That of course made me sob lol. I met her parents next. They are so awesome! I see where Bree got her personality from. I stayed for a bit to watch the slide show and to just look around at the people. I flew 401 miles and drove 104 miles to be there, I was going to make my time worth it and not stay only 15 minutes.

I got a few extra memorial cards to send to some people who wanted to be there but couldn't.

After I left I decided to take a trip to Chapters. Bree's favorite place. It was kind of surreal walking around the store that she has frequented so often. I bought two books while there. I know she would appreciate them both.

I drove around a bit and was able to see the University of Guelph. Its a beautiful city! I took a few pictures to document what I saw and so those that wished they could be there can look at these and maybe feel like they were.

That night and again Sunday when I was going home, I felt depressed. Just down and blue. When I returned to my hotel room after the adventure around town, I had an overwhelming desire to go home. I was dreadfully homesick - something that very rarely happens, and only has when I have been in the hospital. And the suckiest part was I could not use my phone because it was on roaming. I connected to WiFi though so I at least could talk to P that way. Luckily when I woke up I felt better for a bit.

I still can't believe she is gone. It still doesn't seem real to me. I miss her so much. I know it time the pain will dull, but that does little to console now. I just want to talk to her one more time. To see her post a sarcastic witty status update. To make a goofy comment on one of my pictures.

I'll see her again some day. This I know is true.

Almost there!

The Funeral Home

Her favorite store

My two books I bought at Chapters

city limits

yes I pulled over to take these two!

Tim Horton's - her tea haven

A few weeks ago, before I knew what critical condition Bree was in, I had the weirdest dream. At this point it is foggy in my memory but I remember having to cross this ridiculously looooong bridge into Canada and at one point we were basically hoping from "cloud to cloud" to get across. We got on a boat that floated (much like in Mario Bros lol) and that took us the rest of the way. It took a few years to cross to Canada, and since I had done this on accident I had to wait till there was another ship returning to the states.

Saturday as I was crossing the bridge into Canada, I had the strangest deja vu. My dream immediately came to my mind and I knew I was supposed to be there. Of course it didn't take me years to cross the bridge, but in a way it did. I became friends with Bree 4 years ago. And it took me till she passed to make the journey to see her. There was no "her" in the physical sense (they are doing an autopsy to see just what happened to her) but she was all around us that day. In the laughter, the tears, the tea, her recipes that the family cooked for everyone, the music and the pictures. She was there. And I am so thankful that I was there too.

My heart is heavy

2011-05-26T13:24:00.005-04:00

Bree, our beloved Bree, passed away yesterday on May 25th. She is at peace and with her friends Megs and Karyn and all those that have gone before her.

My heart is broken. I am so sad that I will never be able to talk to her again. I'll never be able to see WOMAN!!!!! pop up on my screen. I'll never be able to use all those funny MSN smileys with someone and giggle like a school girl when the chick is burning. I'll never be able to send her texts messages and I'll never have an escape plan (she always told me if I needed to run away from the US as a convict I was welcome to stay with her lol).

I've never met Bree. I've never talked to her on the phone. I've never heard her voice. But we were close. I count her as one of my closest online friends. We shared so much. All the aspects of lung disease that you can think of. All the aspects of med side affects you can think of. We talked about the funny, the gross, the down right nasty. And through it all we just laughed and coughed and smiled.

The online world is now a much less lively place. Her blog would cause uncontrollable laughter followed by uncontrollable coughing. But it was always worth it. She had a way with words. One that I was always jealous of. She made her posts come to life and bring insanity into your world. She was a character. And that character has been written out of this world's script.

These past few months as she became sicker and sicker I just prayed that she would make it out alive. Even if it meant she had to be blind for the rest of her life, as long as she was alive and happy and healthy I would be happy. But it didn't happen. The virus she caught proved to be too much. I just hope she didn't suffer.

I remember almost 2 years ago when she got the call that saved her life. I remember being so ecstatic and elated that she was getting her chance to breathe again. I also remember being nervous and scared. I kept thinking what would I do if she didn't make it? How would I live without being able to talk to her almost daily? I was filled with such conflicting emotions. When she came out on the other side like a champ I was doubly excited. She was back and she was going to stay with us for a very long time.

I'll never forget her. My first memory is when we were both members of "that" site a couple of years back. She was blogging on there and the first post I read by her was about her need to wear oxygen when she was driving to work and while she was at work. She was so young, 21 I think. I was sad that a young vibrant woman needed to wear O2 and needed a transplant. It was my first real look into the lives of those with lung disease, besides my own. She showed me a lot of things and I will never be able to repay her for that.

At this point I have come to a fork - should I make the 10 hour trip to the funeral, or should I mourn from home. I want nothing more than to say goodbye to her. For me, seeing the services is what makes it real to me. I know it is real, I know she is gone, but seeing her memorial will really hit it home for me. Much like when Jenn passed. It wasn't real and I didn't really cry till the services. I've cried for Bree, but nothing like I would if I was there. I have till tomorrow to decide since her services are on Saturday at 3pm.

Breathe Easy my friend. Until we meet again.........

Bree

2011-05-17T11:27:00.006-04:00

Everyone out there in blog land please please please send some prayers and positive thoughts to my friend Bree. She is not doing well and her family has removed her from life support. I am sad and upset and angry and everything else that you feel when you know a friend may not be around much longer...

Pondering the fatal infection

2011-05-16T20:45:00.000-04:00

Do you ever have a hard time sleeping or falling asleep? Is it because your mind won't shut off and let you just relax? Do you think of stupid shit that you would much rather not think about, but if you had to, to at least do it during daylight hours?

Yeah that was me last night and this morning.

The passing of a friend on Friday has made a few of us remember that we need to get our advanced directives in order. Most of us have thought about it and started the process but never got around to finishing it. Another poster on CF2chat.com let us read some of what she had written down and encouraged us to "steal" what we wanted to for ours. So Saturday night I spent 2 hours writing mine out. Details like me not wanting to be kept on life support if I have no chance of recovery. My desire to be buried with Maggie when I am cremated. Things like that. It felt good to get it all written down and printed out. Now I just need to get it signed.

I guess last night my mind finally took those actions to heart.

I got scared lying in bed.

What if that nasty infection that can kill me, kills me soon?

See told you it was something stupid. OK maybe not entirely stupid since it really could happen, but why think about it at 3am?

What if all the IVs I do and all the breathing treatments and all the therapy does not stop it? What if I wake up one morning to horrible pain and find that my one lung has stopped working entirely? What if I get so sick I can not be placed on the transplant list?

We think we will be strong and ready when our time comes, but will we? I think back to my PICC fiasco (I know it is NOTHING like dying so please do not think I am making light of those who have passed) and how scared I was and all I kept thinking that this was not the way I wanted to die. I had no idea what was going on. All I knew was I couldn't breathe and there were doctors EVERYWHERE in my room. I didn't want that to be my time and I am so thankful that it wasn't.

But how will I be if the infection ravages my body and I am laying there, in my bed, doped up on meds to help me relax and trying to breathe? Will I have the strength to fight back? Will I lay there and see what God has in store for me? Will I just give up and let myself pass?

Those are the questions that kept me up partially last night, scared and afraid, but not willing to let myself speak it, only think it.

Hospital Stay

2011-05-14T20:05:00.002-04:00

This will be a long post so settle in a comfy seat, put your feet up and be prepared to read...

I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday. My biggest worry was the picc placement given the reaction my body had last time to it. Turned out to be the least of my worries...

Thursday night they wanted to get an O2 reading done on me again. I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep. Of course my lungs were in great shape so I didn't need it. Thankfully they did another. However, it was different than the first one I had. They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers. Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it. Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up. Finally she came in and put the O2 on me since it kept beeping. Slept like a rock the rest of the night!

Friday morning bright and early I was wheeled down to have my scan done. I didn't have my morning meds yet so inhaling and holding my breath was not happening. Of course they ask to do so and I try but I failed. Such is the CF life. By the time I got back to my room the picc nurse was ready to poke me. Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious. It worked. I was pretty much dead to the world for the rest of the day!

PT came to my room to do a 6 minute walk test on me. I did well considering I am in the throws of an exacerbation. I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking. We were going to attempt no O2 but my sats just standing there were 89%. The Benadryl really messed my lungs up that day.

Saturday was to be the start of my colonoscopy prep. Just clear liquids all day which meant jello and chicken broth. Yum! Sunday I started the clean out part. By the time I went to bed that night I was pretty sure I was ready for the next day. My CF gut had other plans however.

I was able to do the upper but not the lower. I was too full to get any ideas of what was going on in there. When she told me this I got upset. I was frustrated, annoyed, angry and depressed. I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge. When I met Dr BE in my room later I was crying. The nurses were great and really tried to cheer me up. Poor Dr BE. Last time I was in I was crying with him and again this time. The guy must think I am a mess! I could see the sympathy in his eyes and it made me feel better. So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out. But what was the question.

At first Golytely was the choice. But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again. I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way. That didn't happen. We tried the placement and I think I had an anxiety attack during. I could feel it scraping my chest and then I was gasping for air. A cyster had told me getting the tube through the sinuses was painful. Ironically I barely felt that part. They pulled it and we decided to give the Mag Citrate a go. It was not as bad as I had remembered it from when I was 18. I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.

Colonoscopy take 2 was a success. I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy. So lets review this. Friday night I took 2 ducolax to start the process. Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday. Saturday was just clears. Sunday the same thing, but I took 15 one dose packets of Mira-lax. Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out). All in all I did more than 2 full clean out regimens and was still not clear. WTF?!?!?!? Talk about a slooooow system! I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results. Last time I had a few benign polyps and one that was pre-cancerous. Hopefully these are all benign.

Today I got the results of my CT scan. Well I should say today I was lucid and sane enough to hear the results. It was quite the informative scan I received! My lungs show obvious signs of CF. There was a pocket of infection which of course, was why I was there in the first place. It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH! not far off either). My thyroid is working properly though. They ordered blood work to be sure there were no issues there. They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history. So in 3 months I will get another CT scan done. And finally they saw an air pocket below my heart that is undamaged but inaccessible. It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off. So basically the lower lobe of my lung is shut off, yet unharmed. It could explain the low lung functions even as a child. That was it for the CT scan. I told you it was informative!

My culture showed that the Steno Malt is still there. Seems to me it hides when I am "healthy" then rears its head when it feels like it. I have a feeling this is what is going to send me to transplant land much sooner than I had thought. Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.

Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit. Now every time I see the team it is mentioned. So I guess it really is something they feel I need to pursue now to be safe. I've wrapped my head around the idea even if I am still unsure why me. Though I know the answer, I just wonder why me sometimes. And not in the "woe is me" way. But more along the lines of "but I'm not THAT sick, am I?" way.

Thank you for reading this jumbled mess of a blog post. I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...

(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)

The Big H!

2011-04-28T16:47:00.000-04:00

Today I had an appointment with my new gynecologic oncologist for my Lynch Syndrome. She is awesome and if any of you need to see an oncologist for lady parts I recommend her at Dana Farber in Boston (just send me a FB message!).

I really had no idea what to expect but I knew that one question I had was about a hysterectomy. I've gotten the run around, kind of, whenever I ask about it with other doctors. Even my regular OB-GYN was a little hesitant to say yes go for it. Totally understandable it is a HUGE choice to make. But I also wanted to hear from a doctor that deals with cancer regularly. Someone who would be able to say yes you are a good candidate or no you should wait a few years. Someone who would take into account the CF aspect and not my age. Yes I am young to be totally taking away my chance to have a baby. However, given the set of genes I was dealt, I don't think I want to risk passing it on. As much as I would L-O-V-E to have a baby it is not an option. I won't bore you with the intricacies as I have posted many times about it. And something I have been thinking about since my diagnosis almost 2 years ago.

When I mentioned I was thinking about a hysterectomy she immedicately jumped on board with it. She actually just recently performed one on another CF patient! That eased my mind a great deal to know she has dealt with a CF patient before. She completely understood my concerns, my excitement, my questions and my slight hesitation. I've asked other CFers that have had this procedure done so I was able to ask some other things about afterwards, sex, hormones etc. Nothing is as scary as I had thought, and the whole thing is done by laproscopic surgery. That means I will only have a small 1-2 inch scar on my abdomen! I can deal with that!

I was caught off guard when they came in to schedule the surgery! I was so used to hearing, lets talk about it another time, that I hadn't expected to walk out of there with a tentative surgery date in place. Works for me though as I know I want to get things scheduled so when I have to make my transplant consult I will know my free time. And this also takes 2 questions off of my transplant list.

So all in all I was quite happy with my appointment today and am looking forward to a period free life in just a few months!

Words I needed to Hear

2011-04-25T20:36:00.000-04:00

Tonight I relaized something.

I have the best boyfriend I could ever ask for :)

Cheesy? Yes. True? Definitely!

One of my faults is that I don't think I do enough around the house. That I am lazy etc. I know I do a lot. I cook and clean and do the wash and food shop. And pay some some bills that I can afford. Plus work part time and take a class. So I am not lazy but I worry that I am. I've always felt that working at a job meant you weren't lazy and when you didn't work you were. That was why I struggled with going out on SSDI for so long. And sometimes I still wonder if I should go back to work full time (Then I spend a week sleeping till noon and realize why I am on disability). But I digress. Because of this, I feel bad when I tell P I slept till 11am, or that I stayed on the sofa all day because I was exhausted. I feel like "ummm you fat lazy ass there is no reason to be exhausted, get up and clean or do something".

But tonight he made me feel muuuuuuch better.

It's been a very busy couple of weeks between his doctors appointments, his father passing away, Easter, and school vacation (for those not in MA, the kids get a freaking week off of school for Easter break...sorry Spring break). Today was the services for his dad so we were out all day long. I was going to do wash Saturday or Sunday but I forgot. When we got home today I sighed and commented I didn't want to do the wash tonight. P said not to worry about it I was exhausted. To which I replied "but I haven't done anything". And he said the magic words "you do plenty and some things about how I need rest". (Now I know some of you are thinking "he could have done the wash" but its my job, I like doing it because it makes me feel like I am pulling my weight and he knows that - see above paragraph about my insanity lol). I can't remember what he said exactly anymore but I know I felt 1000 times better about everything when he said that.

So yes I do have the BEST boyfriend in the world <3

Sex and Cf (PG-13...I think)

2011-04-16T22:25:00.000-04:00

Such a taboo topic sometimes. And I know many of us get all red faced and embarrassed when we talk about it. But someone needs to right?!?!

Sex and having CF. What does this mean for us?

For me it meant no changes to my sexual behaviors until a few months ago. I could do anything and not be hindered by my lack of lung function. However, as I watch my FEV1 slowly decline, I see a decline in my tolerance with sex as well. Such a bad correlation. It's logical for it to happen but why must it?

P would probably and will probably beat me for postong some of this stuff, but I won't be graphic LOL.

Sex for me now means no on top action. If I decide to "take the plundge" I last about 2 minutes, though it feels like an hour, till I must roll over and practically die and let him do the work. So lately I have forgone the attempt and just been the rag doll. I HATE IT. Not being able to be active during sex is one of the worst things ever (besides not being able to breathe which coincides lol). You can still enjoy yourself when he takes the lead, but how many of us actually enjoy ALWAYS letting him take the lead? We want to be in charge sometimes right? Why must CF take that away too?

I doubt I am the only one out there who experiences this so the door is open, respond with your comments, but remember this is a public blog so please no graphic details ;)

The Pity Look

2011-04-10T20:15:00.001-04:00

You know that look. When someone looks at you and you can see the pity in their eyes. They cock their head to the side and shake it softly.

I experienced this on Thursday when I went to see my PCP. She is hard to get an appointment with since she is working only one day a week while waiting for the baby to come. So I couldn't get in to see her but I got to see one of her team members (The place is HUGE but they are broken down into groups of 4-5 doctors so if you NEED to see someone and your primary isn't there you can see someone who is relatively familiar with your file). I had to get some refferrals for upcoming appointments and also see about upping my anti-depressant dosing. We were chatting and he listened to my lungs and asked how I was doing CF wise. I told him how my CF doctor wanted me to meet the transplant team and gave him a brief synopsis. That's when I got the pity-head-nod-stare.

We also chatted about my depression, mood swings and irritablity. We decided to try upping the Celexa to 40mgs a day instead of 20mgs. So far I feel wonderful! This weekend was the first weekend in MONTHS I haven't wanted to rip someone's head off and kick it across the lake. Granted it was also the first real SPRING weekend we have had but we will see how this week pans out.

What really impressed me was that my PCP called me later Thursday to check on me and make sure I was ok. She had talked to the doctor I had seen and she wanted to just touch base with me. She also promised to come in and see me on May 13th when I am there again for my follow up. I really appreciated her calling me and I will be sticking with this place as long as I can! I really liked her when I had met her before but this really solidified it for me.

IV Time

2011-04-05T22:42:00.000-04:00

IV time we go, IV time we go, hi ho the dairy-o IV time we go

Yep I am almost 98% sure when I go back to see Dr D she will want to put me in and I think I shall agree. My SOB-ness is ridiculous. I wheeze so bad I think the girl next to me in class tonight heard me during the "lull" in the movie. I've been walking MUCH slower than I normally do. And I cough up goo almost all the time. Add in some streaking and yeah its time!

My next appointment isn't until April 27th but I am calling tomorrow to see if I can move it up some. Ironically I was supposed to go in tomorrow but thought it was too soon since she wanted to see me in 2 months and I had scheduled it for 1.

I orginally changed it because, yes, it was only a month, but also because I was trying to wait till classes were over before going in. And I wanted to get my new laptop first too. With the new laptop I can get homework done while in there. But now I don't want to wait another month or so before getting this taken care of. I'll just make sure I can schedule to go in on a Wednesday and be home on the following Monday so I don't miss any class time.

I have also been exercising daily doing Jillian Michaels no more trouble zones. However, I can only do the 5 minute warm up and then I am exhausted and done. 5 minutes of straight cardio kicks my ass and I don't even do the jumping jacks! I do use my O2. The first few times I didn't just to see and my HR was hitting over 170! So now it stays around 155-165. With my O2 around 92%. So not too bad.

One thing I MUST ask Dr D about is a port. I will NOT go through that horror of a placement again like I did around Thanksgiving!!!

So I shall keep everyone posted.

The CF body

2011-04-01T22:08:00.000-04:00

Have you noticed the typical CF body? Skinny arms, wide chest, barely having hips. Yeah I have it too. And I HATE it!

With bathing suit season fast approaching (though when you look out my window and see 3 inches of snow on the first of April you don't see how it is fast approaching), I went shopping for an updated new two piece. I can't wear one pieces, they make me feel like a boy, seriously. Unfortunately I haven't tried it on yet; I'm too scared. I know exactly how I will look and I am dreading it. To this day I still feel like one of those mal-nourished kids from Africa that you see plastered on the TVs all the time. Skinny arms and legs and big, bloated bellies. Only mine is up higher in my chest area, well an partially down in my gut too.

I have no boobs (Victoria's secret stopped making my favorite bra years ago in my size from lack of consumer need - I've been told) but this HUGE chest. Think size 14 bridesmaid dress and a dress sales lady trying to tell me I need a 4 not a 14. I proved her sorry ass wrong haha! But it has me very self conscious. My chest is wider than my hips. I can't wear any tops or dresses that zipper because they won't fit. Anything tight looks stupid on me. I feel fat and gross. And I KNOW I am not. That's what gets me.

I AM NOT COMFORTABLE IN MY BODY!!!!!

And its not like it is something I can change. I can't make my rib cage get smaller. I can exercise all I want but its not going away. When I put on weight it doesn't go to my skinny arms, it goes to my already bloated belly. It's something I need to work on and improve.

CF doesn't fuck you up enough it has to mess with your self esteem too :P

Transplant

2011-03-26T21:24:00.000-04:00

For many this is a means to continue living and hoepefully in a better manner.

For others its a scary thought that is unexpected.

For others is a wonder why its being mentioned.

I fit into the last category. And possibly, ok yes, the second one. I'm a bit curious why me? Why am I being referred to transplant when there are others out there that are far worse than I who are still going along not being referred. I spent an hour at the university that I plan on getting my masters degree from today, talking to the coordinators and walking around the main building. I go food shopping and clean the house. I make dinner and try to exercise. So why me?

Am I jumping the gun, though my doctor mentioned it? Should I wait? Will I feel like a complete idiot when I sit down to talk to the doctors? Will they laugh at me and tell me to come back in a year?

Just things I wonder about as my head lays on the pillow at night...

Lazy or Tired?

2011-03-19T12:41:00.000-04:00

How do you determine which is you?

This is something I have been wondering all week as I slept 13+ hours a day. And even taking naps. Spending more time asleep during the week than awake can make one wonder WTF is going on.

While I am FINALLY feeling a bit better, more energy, less mucus etc, I still wonder why I slept so much. And if I was just being lazy, or if my body really did need it.

This feeling hits me quite a bit. And not just with sleep. With other things as well. Like exercising, taking the sheets off of E's loft bed and washing them, walking the complex etc. Sometimes I wonder if I use my CF and being tired or lacking in energy as an excuse. But that I use it deep down inside so I think I have no energy when really all these years of slowly not being able to do things has made me lazy. For example, I hate steps because they make me cough so I avoid them. Yet when forced to walk the steps (like last weeks clinic when the garage elevators didn't work and you didn't know till you parked on the top level) you can do it, albiet slowly and painfully.

I could walk the complex daily, but I don't. I could drive to the lake and walk parts of it, but I don't. I really could get back on a horse and ride, but I don't.

But WHY don't I?

Am I scared of the result? That I will realize I CAN do these things? Or that I will realize I really CAN'T do these things? Which is it?

The only way to find out is to actually do it. And this summer, my goal is to walk parts of the lake when its not 100 degrees out. Maybe I can start there and see where it leads me...

Clinic Appointment and other stuff

2011-03-09T12:54:00.000-05:00

I think I may have jiinxed myself on my last blog post. Nothing happening HA!

Yesterday something happened....something I wasn't expecting.

Clinic started out great. Weight was up slightly, my O2 was actually at 95% on room air for once, no temp. Then came PFTs. I started at 1.08L (36%) and ended at 1.16L (39%). I'm quite the jumper even on a daily basis as you can see. My baseline is around 1.31L give or take a few .01's. I was happy with it considering I have been junkier lately and last week I was streaking almost every day, all day.

My doctor came in a bit later and I told her about the junkiness, the streaks etc. I've been very tired lately, like all day, not just when I get up. Needing naps even if I can't take them. Using O2 at night again. She gave me an rx for oral Cipro for 2 weeks. We both hope it helps and that I can avoid IVs.

Then came something I wasn't expecting....

"I'm gonna give you the number for the transplant clinic over at *&%#(*%!@. I don't think they will want to start the evaluation process right away but I do want you to get in and get to know the team".

WHAT?!?!?!?

She then rolled over to me (wheely chairs lol) and explained to me why.

I can't use any inhaled antibiotics. I responded very well to Inhaled Cipro in the study but that was before my resistance to TOBI started. So the chances of me being able to tolerate inhaled Cipro are very slim (supposed to be out soon I have heard). Oral antibiotics usually don't work, but its fun to try. I do use O2 on a daily basis, be it sleep or exercise. When I get sick, I get SICK...numbers get low, but I do bounce back. However, only Prdnisone and IVs keep me above 40%. Neither of which I can stay on constantly. I asked about maintenance Prednisone and she said they frown on it because it deteriorates your bone density and you need to be on it constantly after transplant so they limit the use of it pre to what is needed.

So while I am not in dire need of being listed, I am a good candidate to at least start the process and get to know who will be cutting my chest open at some point.

I called my mom and boyfriend to tell them. I am hoping both will come to the appointment with me as I know I don't want to be alone when I go.

The phone call I am dreading is to tell my dad and my brother. I like to shelter both of them from the "trueness" of CF. Not that they can't handle it but I just don't want to "hurt" them. Hard to explain yet I am sure many of you know what I mean. At some point I will have to tell them both, seeing as they are both, hopefully, part of my support team.

I'm now at the stage where I kinda just wanna hide in bed and see if it all goes away. Good thing the social worker gave me a number for a psychologist yesterday (I had asked her a few months ago if she could find me one experienced with chronic illnesses and she came in before my doctor yesterday to give me the number). Not only do I need to make an appointment with the ENT and GI docs, I now need to make one with the transplant team and the psychologist.

Comfy bed? Lots of covers? Sure sign me up!

Absence

2011-02-14T21:22:00.000-05:00

Sorry for the lack of posting lately. My heart has not been in it and I have nothing much to write about. I am not sure when I will pull from this funk but you will know with a fabulous post :)

Prednisone

2011-01-26T22:45:00.000-05:00

I'm starting to think my Cyster Tara is on to something....a maintenance dose of prednisone might be a good idea.

I am tight. I am inflamed. I am spastic.

Oh, in my lungs :)

I'm short of breath with a lot of things. I get tired very easily. My lungs just all around hurt. But my mucus production is low. What I do cough up is light yellow to dark yellow. And I feel overall fine. No exacerbation in the works.

This all leads me to think that I just need something to control the inflammation that I am not getting from my anti-inflammatory meds - Singulair, Symbicort and Zithromax.

Hopefully when I see my doctor the first week of March she will agree with me. As of right now I can not take prednisone anyway (for reasons I can not discuss) so there is no point in calling her about it. I'm sticking with my 3 albuterol/atrovent treatments a day and trying to avoid the bitter cold as best as I can.

Starting School!

2011-01-20T11:03:00.001-05:00

I am so excited!!!! I started the grad school process (I think I blogged about it but I could be wrong) right before the new year, but found out shortly after I needed a few more history undergrad classes. So I signed up today for my first history class at NSCC! I will be taking History of World Civilizations 1. Classes start this Monday.

It feels great to be on my way to my goal....an MA in History.

What is a cure?

2011-01-14T11:06:00.000-05:00

I apparently opened a can of worms this morning on Twitter when I said a cure was a laughable matter. In my opinion I do not think a cure for anything, including CF, will ever be found. I have two reasons for thinking this. One being financial gain and the other being what a true "cure" really is.

****** Before I go on, please remember. THIS IS MY BLOG therefore MY OPINIONS. No one is right, no one is wrong. We all have different views on everything. Please respect this. Any negative name calling comments to me, or to anyone who responds will be deleted. If you want to be rude, at least show your face and don't post as anon, or if you do, leave your name. *******

Let's start with the latter - what a true "cure" really is. This will vary for everyone. Some people feel that just being able to treat the disease effectively with meds, and allowing the person to live to the normal lifespan is a cure. I don't see it that way. To ME a cure is eradicating the disease. Wiping it out so it no longer exists. This is not possible for many many diseases, maybe even all of them. CF for example can never be wiped out unless every single person who procreates is tested and allows their unborn fetus to be scientifically "created" so no CF genes are carried on. The money required for this is outstanding. Not every single CF carrier or CF patient can afford this. Once that person is born with CF, they are going to have CF in every single gene of their body until death. CF is genetic, it is written into our DNA. Unless we can totally change every single gene in the body and "fix" that one malfunction, we can't sure it. And even if that gene is fixed after the child is born, there is some damage done. That damage starts from the beginning...maybe that child would have been heavier at birth. Maybe that child had MI when it was born which lead to the diagnosis, and now the damage from that is there. Even if they were to be "cured" of the gene, the damage is done; yes insignificantly perhaps, but it is still done.

We can carry this through to other diseases. Let's use Cancer as our next example. In a way yes it is partially cured as is. We can remove the breasts of a woman with breast cancer and she is essentially cured as long as it hadn't spread to any other organs. We can remove the tumor filled colon and that person no longer has colon cancer. But they can still get cancer, in other organs. Cancer has not been cured, that person has just been ridden of the disease for now. It may come back and kill them, or something else might, no one knows. But as long as cancer exists, it is not cured.

My other line of reasoning for why disease will never be cured, is that there is too much money to be gained from the meds used to treat diseases. CF alone has a HUGE financial gain factor. A months supply of Cayston is $5000.00. Where that money goes I have no idea, but I highly doubt the owner of the drug company drives a used Saturn and lives in a two thousand square foot home. Why would he/she want to give up their lifestyle when a cure is found and those meds that support that lifestyle are no longer needed. Yes the medical field, research etc is supposed to be about helping others, but if you think that no one is in it for the money you are naive. This country was founded by the rich for the rich (whole other topic) and anyone who can take advantage of the opportunities that the country offers. Supplying medicines and technology for those who medically need it is just another business, like cars or clothing. Only thing different is lives are at stake.

I am well aware I may lose some friends for posting this. Some of my followers may decide I am a ruthless, cold hearted bitch. That's fine. Like I said in the beginning, this is my opinion. Maybe I would feel different if it was my child with CF and not me. I don't know. But this is how I feel as of right now, just me and my unscientific opinion. A cure may be found, and I hope I am proved wrong. Believe me, its not that I don't want them to find a cure, its just that I don't think they will.

Inhaled ABX and me do not mix!

2011-01-03T20:23:00.000-05:00

Well it is official....I can not do any inhaled antibiotics anymore. My last shot was the Cayston and my body rejected that this round.

I am thankful I had the Colistin experience to draw from otherwise I might have let this get too far. And by this I mean the tight lungs and low O2 sats.

It all started when I received my Cayston on December 23rd. Already a few days late thanks to a glitch at the processing center in Lynn. I was supposed to have it by the 20th, but no big deal. I could still get my 28 days in by January 18th for day one of the study. I started the regimen that evening and felt normal. Same for Christmas Eve and then again on Christmas. Though I was feeling a bit tight by Christmas morning, we attributed it to running around like crazy all week. I woke up on Sunday feeling tight and it just got worse. Not horrible but worse; I even asked about tightness on CF2Chat to see if anyone else had tightness from Cayston (it's a very well tolerated medicine). No one had but there were some suggestions for me to try. Things I'd have to wait to ask my doctor for on Monday/Tuesday. Sunday into Monday we got a blizzard and pretty much everything was shut down, including my doctor's office. So I made sure I took my Zithro, Symbicort and Albuterol before the Cayston, even giving the Symbicort 15 minutes to get into my lungs. It didn't help. I made sure to do the Albuterol at dose #2, and that didn't help. By Monday night I was dreading packing the car for Em and I to leave on Tuesday for PA. At this point my O2 really wasn't much lower than normal though I wasn't checking it as often as I would when I am sick. I also ran a 101.1 fever on Sunday night which didn't go away until Monday morning when I finally took some Motrin.

Tuesday rolled around and I woke up with a fever again...99.6, which no is not bad but to start the day on that is no fun. I took more Motrin and started my regimen and prayed it wouldn't start to bother me till after the car was packed. I got lucky and while I was tight I was able to pack everything in. Even in the cold air. That didn't last long. We left for PA and things were good. Sitting in the car doesn't really expel must energy thankfully. However, when we stopped at a rest stop for lunch things just went blah. I could barely walk into the rest stop I was so SOB. Granted it was freezing outside but the walk was maybe 100 yards at most. Nothing bad, no hills etc. We ate and when we walked back to the car I was even worse so as I sat trying to catch my breath I checked my O2. 83% and 156 HR. No good! I knew then that the Cayston was not working out. I still finished the day out though and even one dose into Wednesday.

As Tuesday wore on, even just driving in the car, my SOB got worse. Talking became difficult; full sentences were hard to get out without stopping to gasp. Even Em noticed. My resting HR was now in the 140s even with my O2 running 90-93%. And silly me didn't bring my portable O2 because "I don't need it with rest" HA! Shame on me but really I had so much packed already that I couldn't even think of packing more. Not that it would have helped much since I slept poorly next to Em anyway.

Wednesday morning was my last dose of the Cayston....my idea, as I still hadn't contacted my doctor. By Wednesday night I was feeling slightly better. The tightness had let up some so that I didn't totally scare my dad at dinner. Thursday morning I wrote to the NP at Children's and explained everything, also asking for a prescription for Prednisone. It was the only thing that had helped with the Colistin troubles. They called me back and said to definitely stop the Cayston and up the albuterol to 3-4 times a day if I hadn't already. With that alone the tightness should wear off, but they were calling in the prednisone just to be safe. She said if my breathing did not improve and my O2 stayed low to go to Brigham's ER. Fortunately I didn't get to that point. By Thursday night, when Em and I got home I was feeling pretty good and when I started the prednisone on Friday night I felt even better.

As of now I feel normal and on the plus side....my fevers have gone! Totally gone. I am back to running around 96.5-97.1! So happy!!!

Disappointment is definitely called for as I now can only take oral Cipro, if we catch the infection in time, or IV meds. Though I might see about trying the Cayston again after the study, but starting Prednisone before I start the Cayston. It might work and help keep me off IVs. If not, a Cyster mentioned seeing if I can stay on a low maintenance dose of Prednisone since I respond so well to it. That is a thought too and both have gone into my list of things for my appointment.

When this happens I always catch a glimpse into my future. I am fairly healthy now, even with low lung functions and reactive airways. Which, ironically, don't seem to be bothered by some things that bother those without CF (some perfumes, cleaning products, candles). But struggling to breathe always sheds light on my situation. That really any day I can wake up with lungs that are far worse than when I went to bed. That one day Prednisone alone will not open my airways up. That one day I will need a highly invasion surgery to make me able to breathe better. The key in all of that is ONE DAY. For now, I thank God that the Prednisone and discontinuing the Cayston worked. That I am now running on a manic episode thanks to the Prednisone and getting tons of things accomplished. That I am now home and breathing with this less than perfect but still my own lungs.

2010 Comes to an End

2010-12-31T22:23:00.000-05:00

What a year!

Looking back on the past 365 days really amazes me. I do it every new year's, as do most people I am sure. But I think this one has the most changes. I'm now officially living in Boston with the love of my life, I have a new family, I'm a surrogate mom, I've made new friends up here, I've started the Grad school process, I've been approved for SSDI, I met so many new CFers, I managed to make 2 full holiday meals (for the first time! Christmas and Easter), I spent my first Christmas away from my family, and I am finally content in my life.

I think that is one heck of a year.

Many lessons were learned as well, both new and old. Life is short, we need to live it to the fullest each day. Friends and family are way more important than anything else. And only you can make yourself truly happy.

This year has been an amazing one. Filled with love, laughter, sadness and joy. It definitely had its down, and we lost way too many friends along the way. But overall it was great.

Everyone has resolutions, I usually do too, but this year I think I will pass. Nothing like setting yourself up for disappointment from day one! So instead I vow to make my 2011 as wonderful as I can, despite the hospitalizations, the sickness, the breathlessness and the worries. I will make it a year to remember, as each year should be. I hope you all will do the same!

Be safe and Happy New Year!!!

Merry Christmas!

2010-12-28T08:13:00.000-05:00

Christmas has been one hectic holiday this year! I offered up our home to host dinner and while it was an awesome meal and great having everyone here, it took its toll on me!

Sunday I started running a fever. 101.1 which is pretty high even for me and my night time fevers I get. I didn't take anything so I could see if it would wear off over night. While it didn't disappear, it at least came down to 99.1. However, after being awake for almost an hour it rose to 99.5 so I took some Motrin. That kept it down till early evening when it started creeping up again. I took more and I have been fever free since. The only time I felt bad was when I had the 101.1 fever. I felt crappy for about 2 hours before the thermometer even showed it. It kept reading between 98.0 and 98.5 and I kept swearing I had a temp. See, I knew what was up!

Emily and I were supposed to leave for PA yesterday too. At first I was very disappointed on Sunday when I heard there was a blizzard coming and the chances of leaving Monday morning were going to be zilch. It ruined my morning and part of the early afternoon. But looking back, maybe something/one knew about those fevers coming and decided the only thing keeping me home to rest would be an act of Mother Nature. We all know, fevers don't keep me down! I would have left and possibly made myself worse. So this blizzard was a blessing. Instead we are leaving in about an hour. Our bags are packed and once I shower I can pack the van and we can be on our way. I'm looking forward to spending a few days with my family and seeing everyone. Plus I can't wait to give out gifts! We will be home late Thursday night, just in time for New Year's Eve with my honey.

Here are some pictures to see of our hectic holiday:

Do you still love me?

2010-12-22T22:56:00.000-05:00

I know I know!

I am a horrible blogger!!!

With the holidays approaching I have been super busy shopping, crocheting and preparing for my first family Christmas dinner at our house.

Nothing to report which can be a good thing. I have started the admissions process for grad school! I hope to start this upcoming summer. If I can find my GRE scores all will be OK with the world.

Well I hope everyone has a very Merry Christmas and a Happy New Year. And to those who don't celebrate, I hope you have a happy Holidays :)

Peace on earth...good will towards men...and be an organ donor!

Really Effin Frustrated

2010-12-08T10:42:00.001-05:00

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed. I felt like nothing was accomplished. My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else. My lung function is back up almost to baseline. I blew 1.31L, 45%. My highest is still only 1.45L so I am not too far behind. That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L. So technically I am baseline. Because of my numbers being back to normal, they pulled my PICC. I am looking forward to my first PICC free shower in a little while! I am also no longer culturing Steno Malt. My last one was free of that, though I did culture Class B strep. And the one before that I cultured Aspergillus (spelling??). Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study. I didn't de-sat below 89%. This means that my insurance will most likely refuse to pay for my O2 concentrator. She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim. Even though I qualify for O2 with exercise, needing 2L. She also said that when I am feeling run down and sick I will definitely need O2 with sleep. Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY! Now I will have to fight my O2 company and insurance to have them pay for the concentrator. Just another headache that could have been avoided. I have been using O2 for over 2 years now and I sleep like shit when I don't use it. My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal. But I don't see how 99.6 and 99.8 are normal. IT'S NOT NORMAL FOR ME! I run low, always have. Even at night I would be around 97-98 tops. So to jump 2 degrees just isn't right. Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one. Her response - OK.

My third and final issue is this wretched pain I am having across my chest. Sometimes it is centered directly on my sternum and shoots outward when I inhale. Other times it will go deep into my chest until it feels like it is going to shoot out my back. The pain was so bad on Monday night I was almost in tears when I went to bed. Motrin is helping it thankfully. When I asked about it she asked if I was doing any push-ups or heavy lifting. I said definitely not with a PICC in. I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe". Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again. He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK". For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's. I'll have to pay out of pocket for it, but I don't mind. I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me. I hate rocking the boat. However, if I don't start I might not like what I have to deal with.

Clinic Appointment and Sleep Study

2010-12-02T20:49:00.000-05:00

Last night I had my overnight Oximetry study done. We want to make sure I am getting the right amount of O2 at night. Of course we had to do it during the course of IVs so my lungs are at their best. But the few times I woke up I was around 88-90% so I am sure I dipped lower while sleeping. I woke up totally exhausted, but with no headache luckily. That is also a "good" sign to me. The funniest thing happened too, when Peter's alarm went off. It startled me, just like it does every morning, and my HR jumped way up! Kinda funny to see it actually happen while also feeling it. Made me giggle.

Clinic was OK. My numbers have pretty much stayed the same. I was 1.11L two weeks ago and today I was 1.16L. I went from 38% to 39%. Most of this could be from having the tests at 1:30pm versus the mornings when I usually do. Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s. And if not then, well, I don't know.

The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues. As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point. Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then. Better to have it done now while I am still relatively healthy.

Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday. I forgot today.

The need to exercise

2010-11-28T10:37:00.010-05:00

I posted on CF2Chat a couple days ago about my absolute distaste for exercising. And also asking what others tell their doctors about what they do for exercise, if they are like me.

I'm not a couch potato by any means. Yes some days I don't do much but sit on the sofa watching TV and crocheting, but really I'm making money while doing that lol. I clean at least once sometimes twice a week. Laundry is two days a week. Food shopping at least once a week. This is at least 3 days of exercise, if not in the traditional sense. Then of course there is sex. Might not be the full 25+ minutes of a high heart rate exercise that is recommended, but it certainly gets ya going!

As we were all bouncing stories and ideas around, a good point was made. I need to find something I LOVE to do that is exercise. But what? Well the only exercise based activity I love (besides sex) is horseback riding. However, I haven't done it since I was a junior in high school - 12+ years ago. I was a show jumper. I've got ribbons galore and riding gear that sits lonely in a tote (gave my trunk to a non-profit riding facility for the disabled - love Craigslist!). My lung functions are lower than they were then and so is my tolerance for just about everything. I'm talking 4 hours of sleep sustained me for a day easily back then.

So how to I get myself ready to tackle those jumps again?

First I need to accept (and this is the hardest by far) that I might not be able to get to that point nearly as quickly as I did when I was 16. That I might have to start out walking for the first 5 sessions to build up both my lungs and my leg muscles.

Second I need to start some basic training. I don't mean going to the gym for hours a day, but maybe just a walk around the complex. I walk to the mailbox a couple times a week so maybe I should start taking the long way.

And third I need to find a facility that offers lessons during the day and is fairly close by. And preferably decently priced.

Luckily we are approaching winter. For me, the cold is very harsh on my lungs and unless the facility has a heated indoor ring, I'm out till at least April. But that gives me 4 months to work on my muscle toning and stamina. Someone mentioned the YMCA as a good place to start. Usually programs are cheap and maybe they will even have some day time pool classes I can take.

I need to treat myself like a child...offer a reward for a job well done. Perhaps a new shirt for 2 weeks of exercising. Or a new book. Something that will give me a reason to get there besides just the possibility of riding again one day. Being able to get back on a horse is a post-transplant goal of mine. But why can't I make it a pre-transplant one instead?

Me in Culpepper VA when I was 15

Rocking my new CG tee shirt!

2010-11-27T17:54:00.000-05:00

My bloggy friend CG came to visit me in the hospital (as I wrote about before) and brought me this awesome tee shirt!!!

Leave a comment here or on her blog and tell her what you think!!

I'm loving it and wearing it out tonight as I celebrate a friends 2 year post transplantiversary!!!

PICC Placement Fiasco

2010-11-23T10:17:00.000-05:00

I don't know what to say about this even except that I have never been so scared in my life. I thought I was going to die and I kept repeating over and over in my head that I didn't want to die this way.

Rapid Response had to be called during my PICC placement.

I don't remember too much after the initial excitement, and I only remember bits and pieces during. What happened was this:

The PICC nurse was placing the line bedside, as I have always had done. She had a little resistance at first but it finally went in. As she got to the end, the walls started to close in, my stomach dropped to the floor and I thought I was going to pass out. Then my throat closed. This was in seconds. I told her something was wrong and started yelling I couldn't breathe and to help me. Next thing I know there are people everywhere, a nurse rubbing my head telling me everything will be OK and a doctor rubbing my feet shouting orders. I heard them mention the code cart, rapid response team, Benadryl and O2. A mask was placed on my face at full force O2. Benadryl was injected into my IV line (not the PICC).

I remember seeing a ton of yellow....the gowns they were all wearing. Looking back I am quite impressed everyone gowned up before coming in.

I remember thinking all I wanted was Peter and I know I mouthed it. I was crying, hoping that I wouldn't die. If there was any doubt ever about how I felt about him (which there NEVER has been), this whole thing cleared it up. All I wanted was him.

I was in and out of consciousness. When I began to come to, I could hear more. I saw the room empty when they brought the x-ray machine in. Felt my body moved forward for the plate to go behind my back. I remember my shirt being pulled up to allow the heart monitor stickies to be placed. I remember people saying to hang in there. At one point they asked me to open my mouth, I remember thinking that I didn't want to be vented. Apparently I didn't open it wide enough because they kept repeating to open wider until finally I did. I laid there expecting the tube to be put in at any second. Luckily, I was spared.

Everything was blurry. I was crying, though not hysterically, my mask was partially covering both eyes and I was groggy from the Benadryl.

I could feel the tightness on my arm from the PICC and remember thinking that I didn't want it and I would deal with peripherals until I could get a port on Monday. I still have the PICC and it works great. Looks great and doesn't hurt at all. The PICC nurse came in later and mentioned I was yelling for it to be removed. Opps, I don't remember that!

My doctor came in at some point. I know I looked around for him but couldn't see him earlier. He hadn't been there at first. He was across town in a meeting but came as soon as he was paged. He has been in a few times since then and has been a huge support in this. He wants to make sure that this doesn't happen again while I am here.

I just finally came off of the heart monitor about an hour ago. They were watching my O2 and blood pressure. Both were low. I am on constant O2 right now because when I remove it, I de-sat to below 90%. This is a side effect from the trauma of the morning. Something that can and will improve over the next day or two.

I'm shaken up over all this and realize just how bad it can be and how something so "trivial" can cause something so major.

I am glad to be awake, vent free and alive.

(P.S. this happened Friday, Nov 19 and was written that night)

A few days have passed now since this happened and I am learning more and more. They are thinking what caused this is the nurse pushed the PICC in too far to my heart. This happens very RARELY but when it does it causes all sorts of troubles. With me, the troubles were multiplied because of my already horrible functioning lungs.

As I meet more people I am also hearing more and more. My nursing assistant today was there on Friday and she was telling me some things. Like how people were outside of my room praying I would make it. How everyone was pulling for me because I am so young and too young to die. I won't lie, this made me cry. I know that part of it is because know one knew what was happening, but also that I was in a pretty serious state for a short amount of time (though to the people working on me and to me I am sure it felt like an eternity!).

I wasn't going to post this originally, but you can see I changed my mind. I've told everyone that needed to know what happened, so now the rest can hear about it.

I am fine now, no adverse effects from the fiasco. However, I will be using IR from now on for PICCs unless I decide to take the plunge and get a port.

Special Visitor

2010-11-20T19:38:00.000-05:00

Many of you may remember my visit with CG back in March while she was inpatient? If not, here is the post.

Well, yesterday afternoon she came to visit me! It was nice to have company after my little ordeal yesterday (a blog may follow in a few days explaining, I have written it but not sure if I will post it) and chat about it with another CFer.

She was kind enough to bring me some goodies! I got one of her new tee-shirts (which I LOVE and can't wait to wear when I get out of here), a book - Sick Girl Speaks by a friend of ours that had 2 double lung transplants, and some fun snacks.

It was great seeing her and her post transplant adorable self! She's so bubbly and full of life, I can't imagine not being excited to see her!

Insurance debacle

2010-11-18T10:32:00.000-05:00

This post is going to be very confusing because the whole thing is still confusing to me.

As much as I love being able to get insurance through the state, I am finding that it is truly a nightmare.

We can all remember my issues with getting coverage in the first place (if not check out the posts labeled insurance) and how glad I was that I was finally approved. Well it turns out there was a huge snafu somewhere along the line and I have the wrong coverage...twice.

In April I was approved for Health Safety Net. This being basic hospital coverage in case something happened I would be covered at a hospital and all all community health clinics (i.e. those places you see on TV where anyone with out insurance can go to, a breeding ground for germs, ewww).

In May I submitted forms to show my disability to get covered under that insurance. I was still not covered for anything else and paying out of pocket for my meds.

In June, a decision was made (though I have no paperwork on this, I found out by calling on Tuesday), though what I still don't know.

In July I was officially granted insurance with MassHealth Standard, Neighborhood Health Plan. Cheap co-pays on meds, no premiums, no co-pays on doctors. Perfect.

Fast forward to November when I receive the letter stating my MH Standard is being dropped because I make too much money. And that I am being switched to CommonWealth Care. Have to pay a premium, which is still cheap and co-pays on everything, including doctor visits. No biggie.

Then comes this Tuesday when I hear from the Social Worker at clinic so we can figure out my impending hospitalization. Apparently I am not supposed to be on CommonWealth, but I am supposed to be on CommonHealth. Yes really one letter difference. CommonHealth is for those disabled and premiums are based on a sliding scale of income. I was supposed to be informed of this, through MassHealth, but never was (letter lost in the mail perhaps?). There is a qualifying clause in order to start the coverage. Either meet the $5688 deductible or have a letter written saying you work for at least 40 hours a month. THANKFULLY I just started that consulting work and can get a letter from them. This coverage will be backdated to October 25th, so my appointment yesterday will be covered. However, I am still unsure about the hospitalization (which starts today at some point).

So that is my insurance dilemma in a nutshell. I have insurance, just don't know how active it is. I paid my first months premium on the insurance I am not supposed to have, so I don't know what will happen with that money. And I have no idea how long my IV stay will be.

But hey, on the bright side....I will still get my meds in there and be covered by SOMETHING!

Shameless Blog Plug

2010-11-14T22:07:00.000-05:00

Have you checked out my creative blog?

If not you should do so :)

http://amysartattack.blogspot.com/

Bad day turned into a week

2010-11-12T21:35:00.000-05:00

That day I wrote about on Monday...hasn't ended yet. In all honesty, it has gotten worse.

Blah.

I think it is time for IVs.

Blah.

I don't have health insurance right now, only hospital insurance so for me to get IVs I have to spend a minimum of 14 days inpatient.

Blah.

I've started an email to my doctor to send to her on Tuesday so we can decide what to do. I could try a round of oral Cipro but I think I am too far past that. I cough constantly, and not just my normal cough, a nice hacking mucus filled cough. My energy is crap and don't even get me started on SOB. OK get me started, its so bad an 8 year old commented on it today!!! Her words "why are you so out of breath?" This was said after walking maybe 50 feet to my Jeep to get in.

It's bad. My peak flow numbers are horrific; 190-200 pre-albuterol, 250 post. I usually hover between 300-350 depending on the day.

I was HOPING to wait till after December 1st when my insurance is scheduled to start again so I can be in for 5 days then finish the 14 days at home. But Peter doesn't think I should wait, and if I think about it I don't think I should either. All it is going to do is cause more damage to my already shitty lungs.

And then of course there is Thanksgiving which I would have to miss and my last two art classes. And Peter and I's 1 year anniversary. I'd be getting screwed in all directions!

So the plan is to email Dr. D.on Tuesday and she what she thinks. I can almost guarantee she will admit me. But fingers crossed she will want to wait (though I have to really think if I want to wait) and allow me to spend my first "real" holiday in MA, away from my family, with my new family, instead of in the hospital.

All my spoons are spent

2010-11-08T14:59:00.000-05:00

Days like today I get scared. Days like today I get a glimpse into what my future holds. Days like today I think CF wins a bit

It is 2:30pm. I woke up at 11:30am after 11 hours of sleep. I was still tired, still wanted to sleep, but I knew I had things to do. Like clean and laundry. At 2:30 I am 2 loads into 4 loads of laundry and done cleaning. Not the good tear-the-house-apart-scrubbing-everything kind of cleaning. Just your basic dust the tables, wipe down counters and vacuum cleaning. Then I showered. Now I sit panting, gasping for breath, with a high (122) heart rate but decent O2 (94). Pain in my lungs and back. A desire to lay down and sleep the rest of the day. And a low grade fever (99.1).

All my spoons have been spent.

I have about 2 days like this a week. Sometimes more, sometimes less, but on average 2. Admittedly that is fairly good for a 30 year old with CF. Especially one on SSDI and +/-40% lung function.

I dread the day when those 2 days become 4, then 6, then everyday. This feeling is no fun. It's horrible and I don't know how people do it.

I think my body might hate me?

2010-11-05T12:17:00.000-04:00

But at least it hates me in a common way.

Yesterday I had my ultrasound on my ovaries to check to make sure that the Lynch Syndrome was not following me to other organs. All was well until she found a cyst on my left ovary. She made sure to tell me they are common, but because of my family's history and the LS, the doctor will definitely want me to be checked in a couple of months. And that she will be calling me Monday or Tuesday to go over it all. She needs to examine it and make sure it is just filled with fluids, and not abnormally large.

It was kind of interesting to watch it all on the screen. I felt like a soon to be new mother laying on the table, trying to make everything out in the black and white areas. Only difference is we were hoping to not see anything, and I didn't get a fun little print out.

She the link below for information:
Ovarian Cysts

I am not worried about this. I know a few friends who have had cysts and they were gone in a few months on their own. I just worry because I know one of my aunt's had cancer around the reproductive organs and I can't remember which organ, or which aunt. I will have to make a few phone calls to find out. It is just another inconvenience of my body, growing things in places things should not be growing. Like the pre-cancerous polyps found in my colon last year (which I have a referral from my PCP to see the GI doctor at Brigham's once my insurance is back December 1st). Or the polyps growing in my nose. Or the extra mucus in my lungs. Just annoying when all added up together.

Saying Goodbye to a Friend

2010-11-02T20:47:00.000-04:00

I am absolutely heart broken right now. A friend of mine is slowly taking his last breaths. His wife has made the choice to remove him from the life sustaining vent and let him be at peace. I can't imagine how difficult that choice had to be.

Please say prayers, send good vibes and thoughts to Seattle WA, as they transition through this.

Here is her blog.

The TIPS procedure did not go so well. He was vented afterwards, removed and sent home within a few days. Then the next day was placed back on the vent and has been on it since. He was waiting to be listed for a liver and double lung transplant. Unfortunately, he never got the chance.

Today...

2010-10-30T13:49:00.000-04:00

...I am

Pissed off
Angry
Frustrated
Annoyed

And all at CF.

Right now I am miserable. I can only blame it on CF because I am uncomfortable. I am bloated. I am SOB. I am hurting.

My gut is filled to the brim. I have taken Miralax and am slowly waiting for it to work. Until then I am sporting the 5 month pregnancy look, and feeling dam near close to that as well.

I am SOB because of the bloating. It is pushing on my diaphragm and making it difficult to get comfortable and breathe. I've done my second treatment of the day and still no relief. The albuterol isn't even doing anything for me. Well a little bit, I can inhale a bit deeper, but overall I feel no difference. I want to be able to feel the difference. Like years ago, when I would do a treatment I could tell. I could get back up and go again. Now, unless my first treatment makes me feel that way, I am done for the day. I will truck on of course, because that is my nature, but the day will just result in me grumpy and miserable. How fun.

As is typical me, on the opposite side of the spectrum I am ready to cry and just lay in bed all day. I want to be alone. I want to curl into a ball and escape. Because that is my escape route. To hide under the covers and pretend that nothing exists. I have sleeping pills, I could take them and sleep all day and through the night. But will I? No. I will go about the day in a blur, feeling bloated and annoyed and hope that 11pm comes quickly so I can fall asleep and wake up, hopefully, feeling refreshed.

I have disabled comments on this post because I just wanted to vent.

Female Doctor Appointment

2010-10-28T20:43:00.001-04:00

Today I had my first gyno appointment up here in MA. I LOVE the woman I chose. She is awesome and the office is great.

Why am I chatting about something so seemingly un-CF related? Well it has nothing to do with CF but all about my LS (Lynch Syndrome).

I was lucky enough that when I mentioned it she knew what it was. So she asked about what screenings I have had done. Just the colonoscopy and endoscopy as of right now, and I am actually a few months late on that and need to get one (but I digress). She checked me all out, laughed when I gave her my medication list and gave me a clean bill of female health. Then she came back in and told me she wants me to get an ultrasound done on my ovaries, just to make sure all is well there. She said she didn't feel anything so not to worry. So I won't. But I am sure I still will think about it.

I always forget about what exactly LS affects. Quite a lot! But its also nice that there is plenty of screenings out there to help me stay cancer free!

I found it also funny that the depression survey I took at the beginning came back as mildly depressed. LOL, hence the anti-depressants!

Otherwise all is well. I will be starting my new birth control with the next period and my CF doctor will be happy!

Dilemma Solved!

2010-10-25T20:21:00.000-04:00

It has taken me a while to write but I wanted to make sure I had everything done and lined up before I made an announcement.

I am officially a consultant!

I decided to do it. I spoke with a friend of mine, who is also a CFer and she gave me some good info. Apparently with SSDI you have the option to work for 9 months in a 60 month period and earn any amount of money. How can you go wrong with that?!?! So I let the guy know at the company and today he sent me all the paperwork to fill out. And next step is them mailing me a workstation to do the work from home! I was ecstatic when he told me they can mail it. Saves me a trip to PA, which has been difficult doing because of the lack of funds.

Once I get my first assignment, I will let my long term disability company know. I am still waiting to send them the refund for over paying me since June. I was aware I would have to send all my SSDI money to them when I was approved and I am in the process of that right now. That is a long story that involves a very annoying old bank account and a great new one and trying to get everything organized.

My crochet business has also been very fruitful. I have gotten a few orders from friends on facebook and I have been crocheting up a storm. It's s nice being busy again! But the busy is at home, at my pace and not a must do busy. Its stress free.

Hit a Dilemma

2010-10-15T11:09:00.001-04:00

What to do, what to do...

Wednesday as I was chatting on the phone with my BFF, I mentioned how I miss working. I do. I miss being relied on for help on the professional level. There is something about actually working that makes me feel good, makes me feel important, makes me feel useful.

Then Thursday I received an email that could again make me feel useful.

An old colleague from a previous, though not most recent, job emailed me. The company I used to work for is looking for outside consultants for some construction drawings. They are overwhelmed with work, hopefully for the next year, and looking to hire some previous employees to help with the workload. It is all done at home and they set you up with a computer system so you have access to all the company architectural files to complete the work. You can complete as many or as little sets as you want and you are paid based on what you do. So if if takes 4 hours or 30 hours to do the set you get the same amount of money.

Is it just me or does this sound totally perfect?

But here is the dilemma....

Based on their payment fees, if I were to stop receiving long term disability and only receive SSDI, I could only work on one set a month. Hardly seems worth it to me. But if I were to stop LTD and SSDI I could double my current income.

But is this something I want to do?

I think about the passed 10 months and what all I went through to get approved for SSDI and MassHealth. It was not easy. Would I be able to get right back on SSDI if I were to stop right now? Would I be able to keep my health insurance? Would I be able to maintain my health, my clean home, and the duties of my "new" stay at home girlfriend job?

What to do, what to do...

The BIG 3-0

2010-10-11T11:09:00.000-04:00

Yesterday was my 30th birthday. Today is my first full day as a 30 year old CFer!

I think as you get older birthdays truly do become just another day. Peter and I went to dinner and a movie Saturday night and it was great to get out with him. We rarely ever have time to ourselves. But yesterday was just another day. Well another day that included ice cream cake! Mmmmmm...... No really my birthday was great and I do not feel any older lol. This was my first birthday away from my family, but my new family made it good for me.

Now to the CF part of the day. By the end of the day my tonsels were swollen and my throat hurt. And when I woke up this morning it was the same thing. Added on is a less mucusy, but rougher cough and some soreness in my lungs. I'll see how I feel by Friday when I have a full 18 days of Cayston in me, and if I am not any better I'll call the doctor. Sheesh wasn't I JUST there!

Stenotrophomonas Maltophilia

2010-10-08T20:01:00.000-04:00

This is my new friend. Steno Malt. Apparently I cultured it when I went in for my cold. She said that it is sensitive to a lot of medicines, so the Cayston should work on it. She didn't seem too concerned about it so I am trying not to be as well.

However, it is very hard to keep that mindset when I read up on it. Steno seems to be classified as gram-negative and found in aquatic environments. It's similar to B. cepacia in its ability to resist antibiotics. Again, luckily mine seems to be sensitive to most antibiotics. Read here to find out more. Originally it was thought to not have a negative impact on lung function, however, it may not be the case now. Patients with Steno Malt might actually see a decrease in lung function from it.

So while the articles are not exactly positive, I have hopes that I can get rid of it.

Follow Up Clinic

2010-10-05T13:37:00.000-04:00

Today's clinic was much better than 2 weeks ago. The Cipro and Cayston are doing their thing it seems. I am still junky and somewhat SOB, but at least I can feel it getting better. My numbers have all increased, except my weight which is down slightly but no biggie.

These are my numbers from 2 weeks ago:

PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)

FEV1/FVC - 56%

FEF25-75 - .51L 15%

And todays:

FVC - 2.23L 65%
FEV1 - 1.31L 44% (41%)
FEV1/FVC - 59%
FEF25-75 - .59L 17%

I still have 3 weeks left of the Cayston so I expect my numbers to go even higher. Though I am not scheduled to go back until December 7th.

I was also lucky enough to have an exercise study done while there. I wish I had known about it prior to the appointment since I came in my imitation Ugh(?) boots and a sweater. However, I "passed" the test and do require O2 with exercise. We started off slow on the treadmill and I worked my way. Around 5 minutes she put the O2 on me since I was down to 90%. She started me off on 1L and worked up based on how my numbers and breathing was. I ended around 3L and she said that should be good for me but if I am feeling really SOB I can always check and increase it. I like having it documented now though so that if my insurance were to ever put up a fight they can see proof I need O2. Now I just need to get that sleep study they keep telling me about...

That is pretty much it for the CF front right now.

Letting Go - an article to read

2010-09-29T22:18:00.000-04:00

Letting Go

This is a response I wrote on a thread on CF2Chat. Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article. And I can not agree more with it. You may be deemed a hero for standing up and battling till the last breath, but what is it for? Especially if deep down inside you knew you would be battling till the death. Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from. One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month. They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago. They treated it for a year and it went into remission. A year or two later it returned. Again they treated it and it went into remission. Two years ago she was again diagnosed with breast cancer but also in her lymph nodes. She decided to treat it aggressively again and hoped it would go into remission. It didn't. It spread to her bone marrow. She was on hardcore chemo, trying the IVs, testing the chemo pills. Anything she could to stop it. She was still working and exhausted. When she got home from work she fell asleep and slept till morning. She had stopped living. But she still went on. Eventually she decided to stop work and concentrate on beating the cancer. She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer. At that point it was obvious to most of us that she would not beat the cancer. For it to spread while getting racked with major treatments, meant it was a doozy of a disease. But still she fought on with the chemo. The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone. She never left the hospital. 3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully. I still remember the phone call. He was devastated but could not watch her suffer anymore. The following day she passed.

Her last year was horrible. She slept almost 20 hours a day and had no energy. She was not the same woman he had married. She had died already, but her body was still alive, being kept that way with the chemo and drugs. I do not blame her for her choice to fight. Personally I would not have tried for so long, but then again I have been facing my mortality from age 5. She wanted to see her grand children grow up and to live longer, she was only 65. But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop. My mom-mom had died about 1.5 years before he was diagnosed with lung cancer. Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer. We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer). But we respected his choice. It was his life. What we were not prepared for was learning how bad the cancer was. He had told us it was OK, it wasn't bad. But as he progressed he made my mom and aunt legally allowed to talk to the doctor. He told them it was stage 5 and he wouldn't not live much longer. So we went from thinking he had months and months and months to live, to maybe having only one month. He had kept it from us so we wouldn't try to pressure him to get chemo etc. We found out in March about the cancer, and in July or August how bad it really was. The beginning of October he got really sick and my mom and aunt could not take care of him. They had moved in and taken leave of absences from work to take care of him full time. We had him put in a nursing home for a few days so they could fight the infection that had taken over. I remember visiting him on my way to my birthday dinner. I told him I loved him. It was the last time I would see him awake. He came home a few days later and hospice was sent out. They were wonderful. He had stopped eating and drinking and we knew it was a matter of days. October 20th I went to the movies for the release of the movie Flicka with a friend of mine. I was planning on getting up early the next morning to go see him again. But an hour after I got home my mom called and told me he had passed away. I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment. Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids. My nephew remembers him, through pictures, as a fun happy peaceful man. Not a sick man. I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him. I've never seen my pop-pop so happy. I know moments like that went through his head in his last few hours. The point is he enjoyed his last moments on earth and did not try to fight them. He knew cancer would kill him and he had accepted it. And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender. You need to know when you are tired of trying and want to just live in anyway you can. Even if it means stopping treatments, especially if it means you stop treatments.

Playing the Learning Game

2010-09-27T21:08:00.000-04:00

We all go through this....learning our limits with CF.

Whether or not we ever pay attention to those limits is another story. Me, I seem to pay attention on occasion. However, there are nights like tonight when I bypass all reason and pretend I am a normal, healthy 29 year old woman.

What did I do you ask? Well....I rearranged the kitchen cabinets....all of them. At 6pm at night, 8 hours after my last treatment.

It all started when the UPS guy delivered my Altera cleaning kit from CFServices Pharmacy. It includes a NUK baby bottle sterilizer and some Tupperware. The sterilizer machine is not exactly small so I needed to find room on our already cluttered, too small kitchen counters for it. This lead to cleaning out the pots and pans cabinet, which lead to the "pantry closet", which lead to the pasta cabinet, which lead to the canned goods cabinet, which lead to the bread and baking cabinet, which lead to the spices cabinet, which lead to the cabinet above the fridge. We only have one more cabinet, the dishes and glasses one which I left alone. I spent over an hour doing this, amidst my boyfriend telling me to slow down and shaking his head. And no, there is no way he could help me because I would get frustrated and annoyed so its better for me to do it alone, which he knows.

While I might be feeling better from the Cipro, I am far from back to baseline. To prove just how far away, my lungs decided to play fun games back with me. Each time I coughed, my sight went narrow and I almost blacked out. What makes it even more fun is standing on a stool when it happens. Again, it only took me an hour to do all this so I was able to relax afterwards. But the repercussions will last all night and most likely into tomorrow as well. My back hurts ridiculously, my lungs are still throbbing and I am coughing up streaky mucus. I will be a smart CF woman and go to bed early, and sleep late again tomorrow.

Inviting your CF doctor to your wedding....weird?

2010-09-23T20:35:00.000-04:00

Is it weird to want to invite my old CF doctor to my wedding? A topic came up on CF2chat and my answer included inviting Dr H to my wedding when I get married. But then it made me wonder if that is strange. And if he would really come. And if I would have to invite the NP and one really awesome secretary that was there.

I would love to invite him since I had been seeing him since age 5. He really is like a second father to me. But I am unsure of the protocol for things like this ya know.

What do you all think?

And BTW, no I am not engaged or anything, like I said, the topic came up and I wanted to expand on it :)

Clinic Appointment - impressive

2010-09-21T20:35:00.000-04:00

I am so glad I ended up going to clinic today. Originally when I made the appointment I was told I could cancel if I felt better by yesterday. I felt better but not great so I decided to just go anyway and get my prescription for Cipro. Well, thankfully I did! I ended up being much sicker than I thought and if this round of Cipro doesn't do the trick it is back in the hospital for IVs for me.

They did a pre and post pft on me. Pre was crappy (must interject here and remind everyone that the numbers my new clinic uses are different than my old clinic uses. So while my numbers might look "ok" here, in my old clinic they are 3-4% worse). I will post what they would be for both so you know what I mean and can see what I base things on. Since I am used to my old clinic and how the numbers there correlated with how I felt I use those mainly.

PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)

FEV1/FVC - 56%

FEF25-75 - .51L 15%

Aug 3rd (Penn)

FVC - 2.39L 70%

FEV1 - 1.45L 49% (46%)

FEV1/FVC - 56%

FEF25-75 - .69L 20%

My weight was also down slightly. In August I was 120lbs and today I was 118lbs.

As you can see this cold has beat my lungs up quite a bit. To combat this, I picked up my prescription for 750mgs of Cipro, twice a day, and also started the paperwork to get Cayston! Yay I am super excited! I have been wanting to try this new antibiotic and we are finally going to try it. Hopefully I will be able to tolerate it, unlike Colistin and TOBI. My culture shows I am sensitive to it, so all that is left is to test it out. She said to make sure I do my albuterol and symbicort before taking the Cayston. Fine by me. I need an inhaled antibiotic. Ever since I had to stop TOBI, and not being able to take Colistin, I have felt very vulnerable to infections. Only having orals and IVs to fight off lung infections is no fun.

One final note, I got my flu shot today so now I am protected for the winter. Let's just hope the strand of the flu that runs rampant is the strand in the shot I got.

I'll be sure to update again after my appointment on October 5th.

What would you do....

2010-09-18T17:56:00.000-04:00

for a Klondike bar....lol

No, that's not really where I was going with that but it popped in my head when I wrote it so I had to go there.

What I was really going for was,what would you do with new lungs? What prompted this was a post by fellow blogging Cyster Piper. It got my wheels a turning and I just had to go with it. She talks about her amazing life with new lungs. I will quote one piece of it since it sounded like me in a few years when I am transplanted and breathing again like I should be. "My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it."

Me...I don't even know where to start.

I know I would go dancing. I would ride a horse. I would spend a day at the park running around. I would chase after puppies. I would laugh until I was blue in the face...and not from lack of O2 like now. I would climb to the top of Bunker Hill. I would do a walking tour of all my favorite cities. I would play volleyball. I would laugh all day long. I would sing, even though it would be out of key. I would go camping in the woods with NO electricity. I would laugh for hours. I would run. I would travel. I would laugh.

Notice a theme? Laughing! Yes that's right. I can't wait to laugh and laugh and laugh and not turn blue and red from coughing afterwards.

What would YOU do with new lungs?

Cold Season

2010-09-15T21:22:00.000-04:00

Yep, that time of year is here again. Where coughing, sniffling, sneezing and wheezing are part of the daily routine...and I don't mean for me! School is back in session and so are the germs. I was "fortunate" enough to catch something. And now, I have the raspy voice, raw throat, sniffling nose and achy lungs. Grrrrreat.

I am pretty sure it is not just from school starting up. Between the weekend down in PA with so many kids and parties and lack of sleep, I think my body just hit its limit.

I have been taking it easy since yesterday, just doing what I need to do and that's it. Tomorrow I plan on sleeping or at least laying in bed all day. Friday I really want to go to the Jumper's Classic in NH. But that will depend on how I feel.

I started back on my saline rinses but as of right now nothing is getting through. So maybe in a few days my nose will clear out some and the saline can get through it. I also bought Vitamin C drops and some throat drops to try to help. Along with sucking on lemon wedges (a friend told me about this) and restarting the Keflex that my doctor had taken me off of. I'll give it till next Tuesday then call in and ask for some Cipro. This is not the way I wanted to start the fall season!

Come October 5th when I have my next appointment, I hope to get my flu shot.

SURPRISE!!!!!!!!!!!!!!!!!

2010-09-13T10:38:00.000-04:00

I don't know where to start!

This weekend was amazing!

We were supposed to be heading down to PA for my god-daughter's first birthday party, but it ended up being so much more!!! I walked into my mom's house Friday night to over 60 people yelling SURPRISE to me! They threw me a surprise 30th birthday party...30 days early lol.

I was floored and still in shock and had no idea what exactly everyone was doing there. Took me a few minutes to realize that it was a birthday party! I thought everyone was there to say hi haha! Funniest part is that my brother was"at my mom's with the kids" and text me around 7:30 to see when I would be there because Kayla was getting fussy. I said about an hour and go home if she is too bad. Then my mom text me like 20 minutes later asking the same thing. I told her the same thing I told him. So then I kept her updated when we crossed the bridge into PA etc. Well here, Peter was texting her too! When we drove on the street there were a bunch of cars parked and I commented that someone must be having a party! HA! Little did I know it was MY party! Peter said he laughed on the inside at that!

It was so awesome to see all my friends and my family, including those on my dad's side who I don't see all that often, there. I had been saying to Peter just that day, that we needed to have a party so everyone could meet him at once! Bastard knew ;)

I really enjoyed seeing everyone and the cake and presents and everything. It was a green themed party! Me and my save the world self. Here are some pictures to see what I mean:

this is made from ivy (took it the next day so you could see it)

And we played Pin the Tail on Premiere! My old show buddy, such a fabulous horse!

I definitely felt the love that night!!! My mom made a video picture montage of me up until now and I want to post it SO bad but the way it is on the DVD makes it impossible :( Look for a future post with a few select pictures of what was on it though. And my dad had brought my mom down a folder of all the things my brother and I had made him as kids. It was so funny seeing stuff from kindergarten and preschool and letters to Santa, from Santa, cards I made him. It was so sweet! And boy did I LOVE to color haha!!! And thanks to my dad's early birthday gift, I was able to register for my art class last night! It was the second best birthday present I got (first being the party)!!!

Saturday however, I got even better news! I was approved for SSDI and had my first deposit in the bank. Hoping to get a letter this week with all my info. Unfortunately, all that money I got goes right to my LTD company, but that's OK because at least now I am officially disabled!

33 days till my 30th birthday!

2010-09-07T09:57:00.000-04:00

My title really has nothing to do with my post I just wanted to say it LOL
I must apologize to my bloggie friends for not posting recently! I have been busy with minor things and visiting family etc. School starts back tomorrow and I will be back on the blogging bandwagon again.

This past weekend (which was Labor Day here in the States) Peter and I went away to a friends cabin up in NH. We had so much fun!!! You have to get to their cabin by boat which just rules! No cars, no traffic, no telephone poles! Just pure nature. We had a fire going for most of the weekend since it was chilly. The fire was great, inhaling the smoke not so much. I am paying for it now with some bad SOB and lots of coughing. A few days of hardcore vesting and neb treatments will hopefully set me straight.

Saturday and Sunday the lake was too choppy to do much boating. We went out for a bit but we all ended up drenched by the time we got back in. Monday however, the lake was calm and the sun was shinning. We spent 2 hours riding around and it was awesome. I love the wind and sun in my face! We saw para-sailors and other boaters out. I took a picture of a bridge I want to sketch too. All in all a fabulous day.

As I stated earlier, tomorrow school starts again and I can get back to a routine. This time I will have the full 9.5 months to get into one before next summer starts. This week will be hectic since we are going back down to PA this weekend for my god-daughter's first birthday party. So next Monday all hell will break lose here in MA! I am still vesting, now I need to exercise. I plan on starting at 3 days a week and working my way up. M-W-F will be my Jillian Michaels days. T-Th maybe I can take walks around the lake here. I will need to bring my O2 though, as I know I will be walking a lot if I go. My tolerance needs to be built up, both in my muscles and in my lungs.

Vesting

2010-08-22T21:19:00.000-04:00

I have been SOOOOO good with vesting! 2 times a day every day for the past week and a half. That my friends is a record for me. I will do it at least once a day but to get it both morning and night has been great. And I have been adding in a third treatment in the middle of the day, no vest. Most of that is necessity though. But still. I am working on my diligence and so far so good. I just have to stick with it.

Stormy Seas Part 2

2010-08-17T23:15:00.000-04:00

I've lost myself.

I have no idea where to begin to look for myself, but I am hoping to find a way.

I know what needs to be done, in a way, I just don't know where to start.

This is the first time in my life I feel like I have lost who I am, completely. Me, the person under all the CF garbage. The person who loves life and lives it as best as she can. That's right, I have lost her.

Many things in the life of a CFer can make them lose themselves; the need to stop working, the diminishing social life, the countless doctor's appointments. All those things I expected, I faced and I dealt with in my own way. What I was not prepared for was losing myself when I moved.

***GASP***

Yes I said it, when I moved.

Do not for a minute think that I regret the decision; I love where I am and who I am with. However, I forgot one vital piece of it all. I forgot to remember who I am. I have done what so many women past and present have done. They lose themselves in their relationship. With guilt ridden fingers I can say this is not the first time I have done this, but it is the most abrupt, the most complete, the most alarming. Few times before I succumbed to my boyfriend's life, becoming friends with his friends (many of which are still some of my closest), doing what he wanted, where he wanted, but always making time for my friends. This is the first time that I really can't make time for my friends, because my friends are not here...they are 300 miles away. No, not far at all, but not a day trip by any means. And certainly not a house I can go to on the weekend, just to get away.

As I lay in the bed I share, with the man I love, I cried about this all. I cried about how I have no friends in MA (T and S yes, but having one set of friends is never enough), no life I can call my own. I am a prisoner of our house. Stuck inside because I lack the funds to go exploring, lack the energy to deal with dragging a child along, lack the motivation to find fun free things to do.

I have no life.

Plain and simple as that.

An easy remedy I hear you say. I respond with a smirk saying it is not as easy as one may think.

Where do you start when you don't know anyone? Or those whom you do know are off limits because of cross contamination issues (many CF friends live fairly close to me, we see the same doctor's at clinic etc), and you can not make them into a permanent "friendship" relationship. I have met a woman through someone P works with. This is a start yes, and we are doing dinner this week.

Where do you start when you lack the money to do things that could bring you friends? I have found an art class on Saturday mornings, or Wednesday afternoons, at an Adult Education Center (not seniors because they offer specific senior classes and also adult and children's classes), which I really want to take. It is 10 weeks long for 3 hours every Saturday morning (or Wednesday afternoon). Just a basic drawing class. Something to get me back into my art background...but it is expensive, for me and my disability income. My budget is not happy about the price at all. A.C.Moore does not have any good free classes and neither does Michaels, otherwise I would think about those.

These are the questions that I raised to myself Sunday. These are the issues that have left my eyes still puffy more than 24 hours after crying. These are the questions I fear I may never answer.

Slowly, I am trying to remind myself what I do have here. A wonderful boyfriend who I would do anything for and who would do anything for me. The freedom to have a garden and grow my own vegetables. Support in the form of "family" who have dealt with CF and transplant already. One would think these would lessen the burdens of my heart. Alas, they do not.

***DISCLAIMER***
I am not looking for a pity party, or anyone saying oh but you have a life blah blah blah. Just saying.