Groundhog Day

I wanted to write this long post about how I am feeling lately.  But I just don't feel like it.  And that statement alone sums it all up....I am in a funk....I need to get out of it.  I am blah with a capital B L A H.

I think a lot of it has to do with the lack of female body parts, and the lack of being able to see someone about it.  My surgeon told me I have to see my PCP, but I can't get in to my PCP until after May!  If I didn't like her so much I would ditch her and find someone new....P wants to anyway.  Maybe after February I will consider it.

If you ever saw the movie Groundhog Day, that is how my life feels right now....same thing day in and day out.  I HATE IT.  I need change.  I need something different.  Not P, definitely NOT P.  I love him, he needs to stay where he is.  But the rest....I dunno.......

*sigh*

Slight Update - Nothing Exciting

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

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!

The Pity Look

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.

Absence

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 :)

Today...

...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.

Stormy Seas Part 2

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.

Rough as the stormy seas

I had a very rough day today.  Not CF at all, thankfully, but emotionally hard nonetheless.  I have so much I want to write down but I don't know where to start nor how much I want to tell.  I am sure in due time it will all come out.  But until then I am keeping it clamped up inside, where it normally lies.  One good thing coming from all the turmoil in my wee little head, is I am searching furtively for a new psychologist to see.  So despite the bad, good will come.

Ok don't shoot me yet

Well I am feeling much better today.  I called all my creditors yesterday and was able to move my payments back a month or two.  Luckily my car payment was already payed through June!  Apparently all those extra payments paid off haha!!!

And the best news:  my LTD company called me today and I was approved!  Thank freaking heaven!!!!  He said I will receive my first payment next week sometime.  So I won't be totally broke for too long.

Now if my health insurance would get approved.  I have been approved for hospital benefits so if I have an emergency and need to go in the hospital I am covered.  As for as medications go I am ok with them.  Once I get paid I can get most of them at Target with their $4 generics.  They cover most of the meds I take and I usually only pay $4-10 per med.  The few that aren't covered I can survive a few weeks without (yes no worries I can).

Depression-wise, yes I still am.  Just getting the LTD helped a bunch, but I still need to talk to my doctor when I go about upping or changing my anti-depressant.  Since I have to push my clinic appointment back yet again, it may be a while until I can get this figured out, but oh well.  It will happen eventually!

Thanks for all the support my bloggy friends!!!!!! :)

Spent, done, take me out back and shoot me please

I don't even know where to start.  I am so unbelievably depressed right now.  I sat at my dining room table looking through papers with the hood on my sweatshirt up hoping it would help hide me from the world.  All I want to do is go to bed and never wake up.

I got more papers in the mail today to fill out for MassHealth.  I still don't have health insurance.  My next appointment is Tuesday the 18th.  I emailed my clinic to see what they think since I have already cancelled once.  I need to go.  I haven't seen a doctor since March 17th and I need to soon.  I have so many questions and things I need to up.  I am running out of meds too and I need refills on some things that I can only get with insurance since they are too high to pay out of pocket.

I signed into my bank account to check on my funds and I am negative.  I transferred over the last $150 from my savings and now I have $42 to last me until I get approved and paid for my long term disability.  I have to call my 2 student loans, credit card and car loan companies tomorrow and tell them I can't pay.  This is the first time in my entire life I have had to do this.  I saw the red balance and I started bawling.

I can't buy food, I can't pick up my prescriptions, I can't get gas for my car.  I am stuck.  And I can't ask Peter to help me.  I already live here free of charge how can I ask him to pay for my things.

Then just to add to the mix, I keep getting a bill for my $50 copay on my last appointment in March, which I paid that day.  I sent the receipt into Children's to show I paid and then today I get yet another bill!  I called all last week because I had gotten one but couldn't get through.  Today I did get through and what do they tell me?  They have no record of me sending in the receipt!  Seriously?

On top if this I am pretty sure I am lactose intolerant so I am trying to change that part of my life style.  And my depression is rearing its ugly head again so I think I need a different med or an add on.  None of which can be done until I see my doctor and get insurance.  I can't stop crying and I can't wake up.  I hate depression and I hate CF.  Life was easier when I worked and I know this was for the better but as I look at my negative bank account and the lack of insurance I wonder if it really IS worth it.

Home O2...again

Anyone else noticing the lack of happy blog posts on here lately?  I know and I am very sorry.  I promise that sometime soon I will write a super happy blog!  Don't know when, but soon :)

So now for the O2 post.

I got my home O2 set up delivered today.  I emailed the new coordinator at Children's hospital to see if I could get a home concentrator set up before my appointment on March 9th.  I have almost 500 hours on my portable EverGo that I got right before Christmas.  While I love it, I don't want to wear it out when I will eventually need it all the time for going out etc.  She emailed me back this afternoon to let me know Apria was going to call me about delivering it today.  I was thrilled!!!!!  Talk about fast service!  The woman at Apria called me and within 90 minutes the guy was knocking on my door.  She had gotten everything approved through my insurance and there is no deductible or copay for me (which I was not expecting one because I have the same insurance as I was using in PA).

The delivery guys rolls up and knocks on my door with a concentrator, HUGE O2 tank and 3 small tanks.  And tells me that the respiratory technician will be calling this week to set up delivery of MORE smaller portable tanks.  Even though I told him that I don't need any of the tanks for back up because I have one that runs on batteries.  Luckily Peter is going to put the large tank in the basement so I don't have to look at it.  Yeah I flat out told him I don't want to see it at all.

After signing the paperwork and filling out forms, the guy finally left.  I shut the door then sat down at the kitchen table and cried.  I cried because I felt sick.  Seeing that large tank in the bedroom depressed me and made me see myself as sick.  Needing O2, using O2 and having the concentrator is one thing.  Even the small backup one I had wasn't bad.  But having that monster stare at me just made me sad.  I put a box over the top so I can't see it, but it is still there.

It just reminds me that so much has changed.  The guy asked me how long I had been using O2 and I said a year and half.  Can you believe it has been that long since I started it?  That scares me to that I have also upped my liters at night (I now use 3L and 4 with exercise) and with exercise.  It's the progression.  I just hope that I have a good clinic appointment so I can spiral out of this mood and start to feel better about myself.

And yes, adding a second, or better anti-depressant is on my to-do task list for clinic.

Bad, bad thoughts

I know this is something that we adult CFers struggle with a lot.  Many of us seem to have overcome it, yet many of us still struggle with it on a daily basis.  What is it that I am talking about?

Letting someone important into our CF world.

And by important I mean someone we love and want to spend the rest of our lives with.  Someone we want to share all of our secrets and heartaches with.  Someone whose shoulder you want to cry on and whose hand you want to hold.

That special someone.

This has been a very hard thing for me to do.  It is turning out to still be very difficult for me to do.  And given the man I am dating, it should be easy.  But it is not.  It is harder than I thought it would be.  Granted I have overcome some of my own obstacles like vesting in front of him and wearing oxygen during "ahem".  But these are only the superficial areas of CF.

There are so many more things that I need to let him into.  Like when I am in pain (which is way more than I like these days), when I am having one of those bad CF days, going to the doctor with me and just talking about CF stuff.  We do live together so it's not like I can really hide anything physical, but the inside things, I can hide those like a champ.

You are probably wondering why this should be easy because of who I am dating.  So for all of you who do not know, I am dating the brother of a close friend of mine, whose husband had a double lung transplant Thanksgiving day of 2008.  The hubby and my man are also very close friends, and he is a big part of the support team.  So obviously he knows what to expect in a way.  All CF cases are different I know, but there are still so many similarities.

And while I am at it, it also has me thinking that I want to stop him from having to deal with anything that I will go through in the future.  I know he can handle it, I have total faith in that, and he has a sister who has dealt with it all too so he has a support system.  But that is no consolation to me at all.  And it should be.  I should be ecstatic that after all these years of dating assholes who couldn't and didn't want to deal, I have found someone who can and will.

So why can't I be happy for myself?  Why can't I stop thinking that I should tell him to go away and not to worry about me?  Why do I stay?

Well I stay for purely selfish reasons because I love him more than anything and can't imagine life without him. But this love is blinding me, and making me want to protect him.  He has met me at a time in my life where I am not really ME.  I am a dumbed down, less active version of the person I once was.  Will he still love me when I am transplanted and can do all of those fun activities again?  And why must I think about all of this now when I have not even started the evaluation process?

If you didn't think I was crazy before, now you are well aware of it.  I am a looney waiting for the straight jacket and people in white coats to take me away.

It's raining outside and in my head

Another day another blog.  And still feeling lost and blah.

I want to shake this feeling and I am starting to think it won't happen anytime soon.  I was like this yesterday and even shed a few tears.  That is rare for me.  I was hoping to wake up in a better mood today, but I sept until almost noon (with an hour earlier to read a few chapters of my book) and still felt moody.  No desire to exercise, no desire to leave the house, no desire to eat.  I didn't eat dinner last night, which my boyfriend commented on.  I ate dinner tonight but it was my only meal today.  I hate feeling like this.  I will be sure to mention it at clinic and hopefully get something to add to my anti-depressant.  While I am sure I will overcome this in a few days, I don't like not wanting to smile, or eat or exercise.  Hell I didn't even do my night time treatments last night because I didn't feel like it.  We all know that is not good in <40% FEV1 land.

I know right now is the in-between period for me.  I have to wait until April 1st to switch my residency, apply for SSDI, etc.  So until then I feel like an outsider.  Like I am just here and not here.  I can't drop my long term disability insurance until SSDI kicks in, which means I can't get a small part time job or go back to school until that happens.  I can't re-decorate Peter's entire house because that takes money and I am running on a tight budget and so is he.  There are only so many tv shows, and so many books you can read.  I have almost completed an entire baby blanket in about 10 days (will be done Friday for sure).   What else can I do?

I just hate feeling like I have no purpose.  Hell I can't even volunteer on LTD because it is like work.  I don't know how people do this for long periods of time.  I'm going insane and it's only been 2 months.  Sad as it is going into the hospital wouldn't be so bad right now because then at least it would be a change of pace for me.  How sad is that?

Guess I better be careful what I wish for or I might just end up inpatient at clinic next month.

Feeling blah

Life not working sucks.  I feel like a total loser, like I should be doing things and I am not.  I know this is all for my health and I can’t imagine getting up at 5:30 again to go to work, but I still feel like I am worthless.  I knew these feelings would hit eventually but I really hoped they would hold off for more than a month.  I’ve been out of work 5 weeks, that’s it.  I am just getting into a routine with my meds in my new home.  I should not feel like I need to work to show my worth.  But alas, I do.

I am hoping that once I get all of my stuff up here and I have my exercise videos and ball I will feel better, because then I can exercise.  Right now, all I am doing is sleeping until 10-11:30 and then sitting on the sofa till Peter gets home.  I do wash and sweep but I haven’t done much else.  I just don’t have the energy for it.  I can’t tell if it is a mental lack of energy or a physical one.  Meaning, am I hitting another low point and will need to ride this out and hope to feel better in a few days or weeks?

And I don’t want anyone who doesn’t work thinking I think they are losers.  I don’t and I know this is for my benefit.  But I have been working since age 15 so for me not to work is just weird and strange to me.  I don’t like it.

did way too much this weekend

I definitely did way too much this weekend. I had a blast, but I overdid it. I feel like crud today. My throat hurts, I’m exhausted and my voice is going. I’m still “recovering” from my weekend in Boston and now I added to the mix. It sucks, CF sucks. I want it to go away. And the sad thing is I will never “recover”. Not in the sense that most people would. I’ll never get that sleep back; I’ll never get the energy back.

God I hate CF! I can’t even enjoy a weekend, a NIGHT, celebrating with my friends without CF rearing its ugly head. It’s messed up. Ok, Ok, I know there are many people out there who can do much less than I so I should just suck it up, but I don’t wanna. I’m grouchy and tired today and I deserve the right to bitch about it. So kiss my ass, k?

In case you couldn’t tell I am having a bad day. I’m just down and depressed and want to crawl under my covers until at least Saturday (my raffle is Saturday and Sunday is my God daughter’s Christening). All the death, the exhaustion, everything is catching up with me.

Next Wednesday is my clinic appointment and I am going to ask if he can just write me out of work from now on. I can’t do it anymore. I am so tired all the time, and it’s not like I can get any more sleep. I need to start doing 3 treatments a day so I can stay healthy – 3 FULL treatments, not half assed ones like I am known to do. I need to get on the ball with everything. I can’t slack anymore. It’s not fair to me and it’s not fair to everyone else. I am still alive, I am still fighting. I bet every one of my friends that lost their lives would want that opportunity back. I can’t let it go to waste. I need to stop starting my sentences with “I”s (needed some humor haha!).

My New Year’s resolution is going to be to take better care of myself. I want to start now. I don’t want to get sick and die. And it’s not like anyone can say “oh stop worrying, you’ll be fine”. Because truth is, we haven’t a clue. No one can ever really know when CF will strike hard. It’s a total waiting game. CF really does suck the life out of you…

Happy Birthday to me

Today is my 29th birthday! I'll have to update all my info once I get out of the hospital.

This is my first time spending my birthday in the hospital. So far its not too bad, though I did only wake up an hour ago. But positive thoughts!!

The last two days were very rough for me. Thursday I didn't get in until after 5. It took a while to get a bed available. I did have a good laugh when I got here. I was waiting in admissions for transport to bring me to my room when Dr H walked in with a wheelchair. He was there to take me up!!!! I cracked up!! Nothing like service with a smile haha!!! He asked me how I was doing and I said slightly better. Then he listened to my lungs and told me I was moving a tiny bit of air but that Wednesday a stone statue was moving more air than me. Which I am pretty sure was the truth. He had given me some Prednisone to help and I guess it did on a very small scale. I took 30mgs over the course of 15 hours. Just a low dose since I'd never taken it before and no one was there to monitor me.

Thursday night was rough for me. I cried a lot. Just couldn't stop. I felt bad for the xray tech and the RT. Not hysterics, but just tears. I kept thinking about being in on my birthday, it only being 2 months since I got out (August 24th my PICC was pulled), leaving work with a crap load of work that I didn't get to finish, and having no one to talk to. I don't mean friends, I mean a current crush, boy toy, special someone.

I woke up Friday feeling slightly better emotionally but still shitty physically. Fevers all day, needing treatments every 3 hours, low O2 sats and bad lung pain. I "passed" the 6 minute walk test. Or failed. Whatever you are supposed to do lol. I didn't use O2 but I should have and we got lucky since I had a treatment 20 minutes before I went. I was still very SOB during and after and dropped into the mid 80s. I got to nap on and off the rest of the day though luckily. I had my O2 on a bit since resting I was around 86 87. So yeah.

Dr H put me on Prednisone last night and through the weekend. We started with a burst of 40mgs last night and then 20mgs this morning and 20mgs tonight, same tomorrow. So far the 40mgs has helped! I don't feel nearly as tight and I can take a sort of deep breath. My fever has broke thankfully but I've also had about 3000mL of saline since Thursday night haha. Now hopefully I can start getting the gunk up that has been blocked behind my non working airways.

I'm super bummed that I can't go to Boston next weekend. I was going to go visit Shawn and Tina and also see Jenn's fiance Andy while I was there to get some of Jenn's yarn. And Sunday I was meeting with a friend of my friend's who does professional photography. He was going to do a shoot with me! But he lives in Washington state and is only out that weekend for a wedding. So that is shot to shit too. Oh well. I was looking forward to seeing the beautiful foliage up there and looking around to see if I'd like to live there since I've been considering it. Oh well maybe the following weekend!!!

Well that's my update for now. I'll keep everyone posted and hopefully I'll be out by Friday (and if I am. Maybe I can sneak up to Boston anyway lol).

Sent from my Verizon Wireless BlackBerry

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!

Having a bad "baby" day

Ugh I am so bummed out today. I had this amazing dream last night…extremely weird but amazing. I was pregnant, only about 4-5 months and I had a tiny little belly. The weird thing was when the baby would kick I could see the whole foot push out of my tummy (still inside I would only see the imprint through my skin) and it would bend me over cause it was uncomfortable. But I could see that little tiny foot like it was my own. I was very happy to be pregnant in my dream even if I was dreading telling my CF dr about it. It was so real. I remember rubbing my belly and talking to it. Being SO sure that it was a little boy because of how strong he was kicking.

Then today I came into work and my cubby buddy and I were talking about her pregnancy and she was showing me this magazine that has the baby at different months and what they look like. She starts her 6th month next week (I think) so she showed me what little Baby M. will look like. It’s a baby!!!! And adorable!!!! You could see every little feature on its face and see the hands and feet and arms and all. It made my heart hurt....

I know I have accepted the fact that I will never have a baby of my own but I still want one. I still long to know what it’s like to feel your child growing inside of you, to feel the first kick, the first roll over, the first everything. I want to experience all those things. I wish I could know what its like to go through labor and look down on your child for the first time when the DR hands them over. I wish I would know what its like to watch as your child grows and rolls over for the first time, crawls for the first time, walks for the first time and talks for the first time. I can see these things with my friends’ children, but it is so much different when it is your own.

I have never spent so much time with someone pregnant as I do now. Sure I have had friends and family pregnant but I am with my cubby buddy 40+ hours a week. When she feels a kick or something she tells me. I adore when she does, since I won’t get to feel it myself, but it does make me hurt. It’s a reminder just what CF is taking from me. Yet another dream of mine down the drain and out the door. I am super excited for her and I love hearing about everything. I can’t wait until she is really showing and I can see it all (perhaps it will make me glad I’m not having kids LOL). I love that I can experience it second hand and I love that she and I are close enough that she will willing to share it all with me.

I don’t like dwelling on the negative but today I can’t help it. I have 3 pregnant people in my life right now, and one who just had a miscarriage. It’s all around me, everyday. What I long for and what I desire most, and how I will never have it.

Please don’t tell me that I might someday. No, it will never happen. I am too sick to have a baby now and after transplant it is frowned upon and I wouldn’t risk my life and the life of my baby to achieve a dream like that. Today is just one of those days where I can’t put the pain behind me and forget about it. Today it is staring at me full force and I am trying to stare back and win the battle. So far, pain is winning. My heart hurts and my head is yelling at me.

I have issues

I’m stuck in between a rock and a hard place.  I felt frustrated and annoyed this morning.  Maybe it was the past 4 weeks worth of events that have set me off again who knows.  3 deaths in 3 weeks.  The day after each funeral the next one passed.  I am hoping this is the set of 3s.  Though I did not personally know 2 of them they still hurt.  We lost one police officer in my township, the day after his funeral Jenn died.  The day after Jenn’s funeral we lost another police officer in Philly.  Today was his funeral.  Will someone else pass tomorrow?  Just so odd to me.  But perhaps not.

Then of course my Maggie is sick.  She threw up on Tuesday night and had the shits but seemed ok and Wednesday morning she ate and pooped fine.  So I thought nothing of it.  I came home from work Tuesday to find her pooped all over my room, wet my bed and threw up a few times.  But the poop was “normal”.  I was not too worried yet since she was still eating fine and acting normal.  Then yesterday, I come home from work to find my room covered in bloody poop and throw up.  I immediately called the vet and they told me to bring her right in.  I did so.  The vet thinks it is just a virus since she is acting ok.  They did some blood work and gave her IV fluids since she didn’t want Maggie drinking or eating last night.  I also got some anti-diarrhea meds to give her.  $400 later and we went home.  She has been fine today, no throwing up and no pooping nasty goo.  She is sleeping on my lap as I write.  My mom checked on her a few times today to make sure she was ok, since I was to bring her right back in if she continued the way she was. 

Then there is me and my tummy issues this past week.  I don’t know what I ate but my stomach has been on the fritz since Monday.  Still is.  My diet hasn’t changed and I haven’t forgotten to take my enzymes any more than normal.  Maybe Maggie and I are having sympathy shits together (TMI but sorry!).  To add to that my nose has been on the weird side too.  I can trigger nose bleeds from coughing and do so sometimes, but this past week I have had 3!!!!!  That is more than I have had all year.  Last year I had maybe 3-4! 

That of course brings me to the true intent of this blog.  The reason for the rock and hard place.  It is my heath I talk of, in case anyone has been living under said rock and hasn’t a clue.  I find myself wishing I was sicker than I am.  Nuts huh?  But its like I just want to get to transplant so I can start living again and get the wait over with.  Sounds crazy I know.  I don’t want to exercise and maybe bring my FEV1 up 5%.  That won’t get me anywhere.  I need like 20%+ to do what I want to do and to truly feel like I am living.  And then I feel like a total bitch because some of my fellow Cystics are struggling everyday to breathe and would give anything to have 40% back.  

I do appreciate where I am.  I do appreciate that I can still work and that I can still function.  I just hate the “when will I crash” that seems to infect me.  I live everyday wondering if today I will cough up insane amounts of blood.  Or if one of my lungs will collapse.  Or if I will just do something wacky and CF related and be out of commission for a while.  It’s so hard to explain.  And I don’t feel like this every day.  Just a lot recently. 

All these overwhelming emotions hit me on the turnpike this morning.  I was thinking how most likely my office will be the last place I work before I die or get a transplant.  It made me sad.  Not because I don’t love my job and the people I work with but because I am 28 years old and I am thinking of that.  Because it is a reality.  Then in the same breath I hear a commercial on the radio about getting your teaching certificate in 12 months to teach secondary school and I find myself wanting to look into it.  WTF is wrong with me?!?! 

UGH I am a mess.  And for no real good reason.  I shall go finish off my book, sleep well, purchase a new needle tomorrow and continue my crochet lessons. 

Good night and sleep well my blog loving friends.

So very tired

I have been sitting at work all day trying to concentrate but I can’t. I’m just so tired. Partially because I was up kinda late reading. Partially because I am just tired. Worn out. Done. I keep thinking about how nice it would be to work 4 days a week and only 5 hours a day. Or 5 days and 4 hours. Something small and little and short like that. But instead I work 4 days a week for 10+ hours. And I only do this because I NEED health insurance and I can’t afford to get it on my own. Besides COBRA is 18 months. Again with this whole shit I know. Are you sick of reading about it because I am tired of writing about it?

After the holidays, we all came back to work and those people that were gone for the full 2 weeks were happy to be back. I was not one of those, though I was close only being in 2 days between Christmas and New Year’s. My cubby-buddy commented that she could never stay home all the time because she would get bored not working. Me, I think I could get used to it. The ONLY reason I stay is because of the health insurance. It is fabulous. And the only reason I don’t go part time is because I lose my health insurance and have to COBRA it. It’s all or nothing with my company.

I don’t want to work anymore. I don’t. Plain and simple as that. I am tired of getting up at 5:15 to do an hour of treatments before work. Then working all day, coming home eating and doing another hour of treatments before I climb into bed to read for an hour. And I’m tired of still not being able to fully function when I do my treatments. I’m tired of spending my days off in bed or lounging around because I have no energy and want to conserve what I do have. Maybe I am feeling this way because I woke up with a nasty sore throat and swollen glands that won’t disappear.

Where do people go that have no where to live and no one to support them? I don’t trust living with my mom. She is too financially unstable to feel comfortable staying there. I would end up having to loose something of mine so I could help with bills more than I could afford. That would totally suck. I would consider my dad but they don’t have a lot of room. And I don’t want to impose on my brother and SIL even though they said I could always go back to living there. I am in no way asking any of my friends to help me out. That is too much to put on someone. They have families and kids of their own, no need to adopt a 28 year old kid too.

I wish there was a place like senior living that was based on income, offered in-house everything like laundry and was close by. I wish I could live in those assisted living places. I wish I could afford to stay out on my own. I wish I was married. I wish I didn’t have CF.