Bad blogger update

I'm a bad bad blogger I know...a whole WEEK without an update, shame on me.

There really isn't anything to update on. I have not improved at all since starting the Colistin. At this rate yes I will be hospitalized come next Wednesday. I have already forewarned my cubby buddy so she knows, and Monday I will let my boss know so that they can plan accordingly. Unless of course something happens and I feel tons better by then. But I highly doubt it. I think a good old fashioned IV slamming and beating will do my body good!

Today was a mighty fine day. I laid on the sofa for most of the day watching the NCIS marathon on USA and finishing up the baby blanket. I also made a cute little bag to hold my eclipse balls in for my home IVs...yes I'm a geek LOL! Last night I found all the yarns and patterns I need to make the 4 Christmas presents for my female relatives. Today I ran out to renew my library books and I stopped at AC Moore to pick up the yarn. I had no idea but if you are purchasing yarn to make clothing they don't tax you! I never knew that! The cashier asked me and I said they were for ponchos and she told me that bit of info. Good to know!!!!!!

I packed up some yarn and patterns so that I can get started on said Christmas presents while in. And I need to get some more books out too. I refuse to pay for the TV while in so I am going to need something to do for 13 days :)

Well thats all. I will update everyone as soon as I know something for sure...or I miraculously feel like a million bucks!

Clinic Appointment Yesterday

Well I will give the good news first.

My DR was very happy to see I got the results of my genetic testing, even if it means that I have the cancer gene. At least we can be proactive about it now. He apologized for not having much knowledge in the area of Lynch Syndrome (which is what this mutation is called), but said he was willing to learn with me as we go along. He also found an article that he printed out for me to read. AND he has been calling the genetics DR religiously to make sure they called me for an appointment...see he does care!!!! He asked me how I was handling the news and told me to take it piece by piece so I don't overwhelm my self.

This is one of the reasons that I adore my DR to no end. He admits he doesn't have the slightest idea what this will entail with CF but he wants to learn and he sent me to someone he trusts for help. And he suggested that if I wasn't comfortable with them to go to someone else I may feel better with. But given that he knows these people and trusts them I am prepared to work with them. Also, that he was following up with these people to make sure they saw me and found articles related to this is awesome! See I love Dr H!!!!!!! :)

My weight is the same, at 118lbs so that too is good. My blood pressure was low for me. And he doesn't think that my occasional stints in the low blood sugar range are anything to worry about as of yet. He said to just be careful of what I am eating and I seem to know what to do to get the shaky, dizzy feeling to subside.

Now to the bad news...

I am avoiding the hospital by the skin of my teeth. If it wasn't for the GRE test this weekend and my SIL's shower next weekend I would have gone in. But I want to be out for both so he is calling in Colistin for me to try. I have to call him next week and let him know how I feel. Then 2 weeks from today I am going back in to see him. If there isn't a marked improvement I am being admitted. I'm down to 35% and 1.1L. Though not horrible and only down a little from my base line, I still need to catch it now. Plus getting SOB easily and being so congested is not good either. When I wake up in the mornings I can breathe out and mucus will practically fall out of my mouth - so sexy I know. Good news is if I do go in at least I can have the colonoscopy and endoscopy done while in. Kill two birds with one stone haha! I've never had a dramatic improvement from any inhaled abx (except inhaled cipro - which jumped me up then dropped me back down before the study was over), so I am not expecting to be all better from it. We will see, maybe it will work wonders for me.

So that's my news for the day. I shall keep everyone abreast of what happens I promise!!!

Q & A session answers

Ok here are the answers to the questions that you generously asked!!!

Thank you all so much for responding and I hope I was able to answer them throughly!!! Some really made me think! :)

What is one thing that you are able to do / a skill you developed through having CF?

I have become very good at time management and, multi-tasking. College was a “breeze” when it came to managing my time and making sure I was able to get projects done and in when they were due. Learning to manage all of your treatments is a must early on so that you can still have some semblance of a life!

What is one thing you cannot do because of CF?

BABIES!! I will never have my own flesh and blood child. I have blogged quite a bit about this since it will be my biggest regret/disappointment in life.

What would a cure mean to you?

To me personally I don’t think it would mean anything. My lungs are too scarred to be reversed. However, a cure would mean saving many many children’s lives and that is much more important to me. I have lived a decent amount of time and I would rather see me die and a 3 year old continue to grow into an adult and realize their dreams. Not saying I want to die tomorrow but if I did at least I made it this far.

How has CF blessed your life?

CF has given me the opportunity to appreciate life fully. I find myself saying (when I am contemplating whether or not to do something) if it were to come up again next year would I be able to do it and if not then why not do it now. I didn’t start doing this until I was older but now I wish I had begun many years ago. I used to just waste my time doing stupid things (like sitting in front of the TV for hours ignoring everyone else) when I could have been doing something much more worthwhile. I can’t change the past so I live now and do what I want when I want…as much as I can of course. I know that I don’t have to make myself sick trying to do everything and see everyone every weekend like I used to do. I relax and spend time with myself now.

What is your funniest/scariest/most interesting hospital or dr related CFer story?

I did a study back when I was 18 where they inserted a hollowed out flu virus into your lungs to see if your body could tolerate it. It was phase I trials I believe. Any-who…they knocked you out but you were still awake, just out of it. Well apparently I was talking through the whole procedure (amazing since I had a tube down my throat) and proceeded to tell the doctors and nurses all about Winnie the Pooh and the Hundred Acre Woods! The one doctor was wearing a tie with Pooh on it and I just went with it. When I woke up in my room my mom told me the story and I was cracking up.

What do you like most about yourself (non-CF related).

My ability to see both sides of an argument. Sometimes its good, sometimes its bad. If I am super passionate about something then I will ignore the other side but I can always see where the other person is coming from, even if I don’t agree with them. I have a hard time making decisions (bet you couldn’t tell LMAO), and constantly have to write out the good and bad for EVERYTHING.

I know you're creative and artistically talented. When you did realize it and what did you do as a kid to express it?

I have been drawing since I was able to hold a pencil. When I was 3 my mom entered me into a Disney contest for drawing Donald Duck and I WON! Looked pretty darn good too for a 3 year old! I was also creating “blueprints” and model homes when I was a kid. I would get white paper and draw a Floorplan of a home in blue marker. Or I remember I made a house and all its furnishings out of index cards one time. It has always been in my blood. A few years ago (ok maybe like 10) I found all my old art stuff from when I was a kid. I used to get markers and colored pencils and drawing paper for Christmas all the time. I loved it! A C Moore is still my favorite store but I have moved on to add more things into my creative realm.

What is the best thing you have learned or gained from meeting/talking to fellow CF'ers?

That I am not alone. For so many years I always felt isolated and alone because none of my family and friends could relate to how I was feeling. Then I met all these awesome people online and they opened my eyes to a whole new world. A world that I never knew existed. I am now more proactive with my health and actually understand what I am doing and why I need to do it. Prior to meeting everyone I just did everything my DR said blindly. Now I know why he prescribes what he does and I can ask questions. I don’t think I ever really asked questions of him before. I just sat there, gave him answers to his questions and was off. Amazing how knowledge can turn your life around. I may be sicker than I was then but I feel better about my life and more prepared for what will happen than I did before.

I now have friends that I can turn too when I am having a bad CF day and they will know EXACTLY what I am talking about. I can discuss hard end of life topics with my new friends and not worry about upsetting my RL friends and family. I feel much freer and more open about my CF than I have in years. Discussing it doesn’t seem inappropriate anymore.

Non CF wise...if you could have one wish, what would it be?

I want to visit all the places I have read about. All of Europe and parts of the US I haven’t been to yet. Being a Historical Fiction nut I read all about England, France and Italy way back when and I long to see the castles and homes of some of the people I read about. So that would be my wish, to travel all over Europe visiting every castle, farm and city I could possibly get to. Oh and not have to pay for it of course LOL!!!

You say you just recently accepted what CF means to you. What event triggered this acceptance or was it just a gradual realization of what this disease involved?

Joing the online community was a big part in this. Before I was unaware of just how much this disease affected your body. I knew about it but never KNEW about it...if that makes sense. Once I started talking to other people with CF I knew that was I was experiencing was related to CF and not just some wacky other issue. It also meant that I could ask my DR about it and not feel like a fool. The reason that I decided to join the online community was because my boyfriend and I at the time were in a rough spot and that was triggered by CF. He wanted babies, I wanted babies but I wasn't sure about CF and babies. So I googled it and low and behold ended up on the evil cf forum - now moved to the better cf forum of course. But I needed information about women with CF having babies to prove to him I could reproduce. Needless to say I learned that having babies was not going to happen when I talked to my NP about it and found my FEV1 was a bit too low for their liking. I knew then that my perception of what CF was and how it affected me had changed. I talked to women that had babies and saw how difficult it was for some of them.

Colon Cancer Gene Results

Well I got the results of the cancer screening test back and I am positive for the hMLH1 gene. If you are not sure what I am talking about read this post and stay up to date will ya???!!?!?!? :)

I knew I would be positive, but it is still a shock. It is one thing to think you may have it and another to test positive for it. So now I will start getting colonoscopies and endoscopies done every two years starting as soon as possible. Luckily I see Dr H on Wednesday so he and I can discuss this and he can talk to the gastro team about me going under for both. And I also need to make an appointment with them to discuss our game plan. When she called me she said she got the results back on Friday but didn’t want to ruin my weekend, even though she knew I would take it in stride…which I did. I even laughed and said that I knew it was going to be positive. Besides, I got the results in less than two weeks…that is NEVER a good sign LOL.

Calling my dad and brother are first on the list though. I have to let my dad know the results and try again to convince my brother to have the test done. I am almost positive he will be negative. I seem to take after my dad’s side so much more than my brother does. He takes after my mom’s side more than I do. So hopefully he is like her in that respect. I would prefer me to have the gene instead of him, seeing as how I already have one set of less than ideal mutations…does this make me a double mutant…or triple? My dad was funny when I talked with him, apologizing for giving me crappy genes. So not his fault at all. I would never blame him or my mom for anything genetic I ever have. I know they didn’t ask Mother Nature to give me certain genes, and if they did they should market it and be rich!

Even though I was expecting this result I am still a bit shaken up. My hands have been shaking since I found out and my gut is all knotted. I feel like I want to cry and I thought for sure I would when I called my dad. I tried to forget about it while listening to some Preston and Steve podcasts but it wasn’t helping. I couldn’t seem to concentrate on my work that desperately needs to go out on Wednesday (or for me Tuesday since I am out Wednesday). I will be taking a lot of Melatonin tonight so I can sleep!

At least I know I will never pass this on to any of my children since I won’t be having any. I guess I really did get the shitty genes in the family. I know there are many positives to knowing I have the gene, like early detection, but it doesn’t lessen the blow. It is safe to say that I was not as prepared for the positive results as I had thought I was…And yes I know this is just saying I have the gene and not cancer but it makes me wonder then if being hard-headed and stubborn has allowed any polyps to grow inside of me. Which is why I need the tests done ASAP.

On a MUCH happier note….look how pretty the Victorian Lance Inn is, I may have to take a day trip to Cape May just to stay in this inn!

Looney Doctor's

Well after my little "revelation" on Saturday with said cute guy from high school I decided that it is high time to haul my sorry anxiety strewn ass back to the psychologist's. I did some research online and found 3 that I am going to look into some more. One I am very interested in because one of her fields is health disabilities. I really wanted a clinical psychologist and she is a licensed professional counselor, but that may not be a bad thing right? Wednesday I will be making some phone calls to see when I can get an appointment.

Yay for being crazy!!!!!!!!!!!!!!!!!!!!!!

As a side note, the dam bedroom door upstairs is creaking from the wind and giving me the willies!

Legislation passed for Newborn Screening of CF!

Newborn screening legislation was passed in all 50 states!!!!! Screening for CF that is :)

How awesome!!!

Here is the full article.

Thanks Katey for posting this on your blog :)

Rearranging my life

Well today we got some shitty news at work...they are cutting our hours and pay by 10%. Crappy but better then letting a shit ton more people go. What this means for me is 2 things and hopefully no more.

1. No school starting in January. It is not feasible by any means.

2. Waiting to do SSDI/LTD. I can't save with that much of a reduction in pay so going out of work just isn't going to happen. Of course it some unforeseeable thing were to happen and I needed to that is different.

I was a mess earlier today wondering what all I could do to deflect some of the financial craziness I am going to encounter. Of course top on the list was selling my baby...my jeep. I can't do it though and my mom said we would figure something out before we have to sell it. So for now she is safe. But I need to figure ways to cut back...I don't spend money on anything that is not needed. Everything is allocated each month and budgeted. Guess I need to recalculate.

I am working on the fabulous questions you all have posted!!!! Some good ones in there woohoooo!!!!!!

Q & A session with Me!

Many of my fellow blogger friends have had great success with a Q&A session so I thought I would join in on the fun.

Feel free to ask me anything you want as a comment to this post. You can post as yourself or anonymously. Next Wednesday, the 15th I will post the questions and answers.

So start asking away!

Fabulous evening but I always ruin it in my head

I hate being all Debbie Downer when I just had a blast at a friends’ house but we all know I am known for that!

So here goes. I hate that when I “meet” a guy, a guy I could potentially date, I immediately ask myself if I think he will be able to handle CF and if he would want to deal with it. I know that I shouldn’t think that way and that it is not my decision but it’s how I think. And it probably comes across as not giving the guy enough credit to be able to handle it. It has nothing to do with that at all. It is entirely me thinking that anyone should get more from a spouse than what I can offer. Pathetic I know.

I’ll explain where this all came from. There is this guy I went to school with (high school). I haven’t seen or talked to him in quite a long time. Maybe here and there at our friend N & K’s house, but not since high school. And to be honest never really in high school either since we didn’t hang with the same crowd (read him popular, me dorky LOL). So yesterday I went to get my hair cut (I’ll post pictures later!) and as I was walking up I saw him in the window with one of his daughters. I ended up sitting next to him but we didn’t talk…again haven’t spoken in years. I thought to myself “hmmm he looks great!” Fast forward to tonight. I am at my friend’s dad’s house for a party and then leave to go to my other friend’s N & K’s house for another party. I walk in the back yard and who is there? Yep, hot dad with both daughters. This time we did say hi and acknowledged that we were both at the hair place yesterday.

What brought on all my self loathing feelings is that I was watching him and wondering if we could date. I know I move fast in my head! But then I was thinking why would he want a sick girlfriend. Why would he want someone that won’t be able to work soon and will need a transplant at some point, yadda yadda yadda. All things that I shouldn’t worry about and should let him find out on his own and decide for himself. And remember all we did was say hello at this point. Unfortunately, that is how my mind works. The minute I see a man that I find attractive I automatically switch to that mode and it’s over in my head.

It also explains why I cling to men that don’t mind the whole CF thing (read P the cop). I have such difficulty finding men that will stick around that when I do I grab on and hold tight and don’t want to let go. Even if they are not really mine for the keeping.

I know I can not think like this. I know that I am single because I think like this (well that and I never leave my house, but that’s because I don’t want to LOL). I know that I am happy right now being single but it doesn’t mean that I want to stay single forever or that I should have to because of my own stupid ways of thinking. I just have no idea HOW to change the way I think. Whenever I talk to my friends about it they just tell me I am crazy and to stop. But HOW?

Ok rant over! I had a fabulous 4^th and I am so glad I went out!

My colon cancer screening visit

I am a few days late on blogging this but I wanted to make it very informative for you all. I had my genetic counseling on Tuesday to find out about the colon cancer gene in my family. Luckily my Aunt was tested for the gene and it was found so they know what to look for. Because of this I should have my results back in 3-4 weeks instead of 5-6. You can see this post for my family history of colon cancer.

The gene itself is actually called HNPCC or Hereditary Nonpolyposis Colorectal Cancer. All my information will be from the print out I received at my visit which is here. It affects primarily the colon and anus but can also cause cancer in the uterus, ovaries, stomach, urinary tract, small bowel and bile ducts. Basically the GI portion of your body and it is also called Lynch syndrome or cancer family syndrome. In my family, like I have stated before, it affects mainly the colon, which the genetic counselor said is VERY rare. They usually see an array of cancers of the GI areas in families with the gene. I told her we are a special family.

There are 4 known mutations of the gene. They are hMSH2, hMLH1 (which is the one my family has), hPMSI and hPMS2. Since the gene is a dominant gene it does not require 2 genes to be passed on to offspring, as is the case with CF. So obviously my dad has the gene (given he had cancer at the youngest age out of his 8 siblings) and there is a 50% chance that he passed it on to my brother and I. If my brother has the gene, he has a 50% chance of passing it on to James and the new baby. My brother has no desire to get tested as of yet, and refuses to get colonoscopies. Consequently, I am hoping I have the gene so that he will get tested (the genetics team thinks I’m crazy LOL).

A lot of what they told me did not bother me at all. I am used to hearing “bad” things from having CF. They acknowledged that too and said that I was very calm and didn’t seem phased by anything. But really I have known about the possibility of colon cancer my whole life so I have been able to deal with it. It’s not like I just had a colonoscopy and was told I have cancer. I am just getting tested to see if I need said colonoscopies. They offer counseling and support groups for those with the gene and also for those who are waiting for the results. I am not anxious at all, and will most likely forget about it until my CF dr appointment in 2 weeks and then again until I get the phone call with the results. I am lucky enough that they offered to just call me with the results instead of making me come down for another appointment. I just had to give my consent which I was more than willing to do.

This quote from the print out will help calm anyone out there that is thinking OMG my great grand daddy had colon cancer and that was it in my family! “Persons at risk for HNPCC usually have a family history of two successive generations of colon cancer or at least once generation with cancer and one with polyps”. So if only one person in your family has had colon cancer and no one had has polyps, chances are slim you have the gene. NOT saying you DON’T, just saying chances are slim. And remember I am NOT a genetics counselor nor am I a doctor!

It was mentioned that when females are found to have the gene, they think about having hysterectomies to remove the risk. They said only with females in menopause and that have had children. I asked about the possibility of having mine removed if I have the gene since I will definitely not be having babies and they told me we would talk about it after the results come in. If I do have the gene they will schedule a colonoscopy and upper GI scan to see if I have any polyps.

That was it and I am glad I finally had it done. I am going to talk to my brother more about him getting the testing since it is a lot easier than a colonoscopy. If he doesn’t have the gene then he doesn’t need to be poked and prodded in the buttocks region. But if he does, it will be good to know for James’ benefit and the new baby’s.