Health Insurance Woes

Today was a rough day.

I am dealing with insurance issues YET AGAIN.  I don't know how often I post about them on here but I bitch constantly on facebook about them.  Seems every other month my insurance company drops me.  I deal with Medicaid and it blows!  Monday I got my information in the mail for Medicare and I am excited to get enrolled on June 1st.  That should help with some of my issues.

However, today as I was trying to sort out WTF went wrong and why I was dropped, I learned that I will lose my Medicaid when I get Medicare.  Reason I know this?  That was why they dropped me, 3 months early.  When I explained I don't get it till June 1st he said "oh ok, your coverage should end May 31st then".  "I can't have *** with Medicare?" "No".

I then proceeded to call the number I was given to enroll in a new plan I was sent a letter about in November (which I never received).  Called them and it just went down hill.  The plans I qualify for based on my income are too expensive for me to afford, plus the high co-pays I would have.  I began to cry and told the woman I would have to call back.  After recomposing myself I called back to find out why I was being put on this particular plan when this time last year I was on the same insurance yet different plan and my income has not changed.  Well they fucked up last year and enrolled me in the wrong plan.  So my premium doubles and my co-pays triple to ten times as much.  I was not a happy camper.

I was on a great plan last year, paying $60 month with cheap co-pays for meds (read $3) and now I will have to go on one that is $125 a month with $12.50-$25 co-pays for meds and $22 co-pays for doctors.  I have no idea how I am going to afford it.  But I know it will work out in the end.

Now I just need to get my eyes back to normal. They are so tired and dry from crying.

Liebster Award

Thanks to a fellow Cyster for awarding this to me!!!!  Jamie is a post transplant Cyster.  She is the one who made those cool paracord bracelets for me!!  Check out her blog :)

The rules of the Liebster Blog Award are:
1) Acknowledge the blogger who gave the award by linking back to them
2) Give this award to 5 other bloggers (who have fewer than 200 readers), and let them know through a comment on their blog
3) Post the award on your blog
4) Best of all - bask in the glory, have fun and share the love!


Here are my 5 picks for the award:


Kelly - she is a cyster who is waiting a double lung transplant.  She is also an artist doing graphic design and photography.  I love her stuff!!!!  I met her a few years ago at Paul's memorial.  


Josh - amazing fibro!  He is spreading the word about CF through his funny and furry friend Moganko.  You must check him out!  


Tara - a cyster who blogs about her two adorable twins.  I love reading the updates she has.  We joke around that we are CF twins.  Very similar in all that we do!


Talana - another cyster being evaluated for a double lung transplant.  We have become close over the years and have meet quite a few times! 


CG - CG hasn't blogged in a while but I loved when she did.  She must get back on the blogging bandwagon (ahem).  She is post transplant and gives me lots of good advice about our will-be-the-smae doctors.  I go to the same center as she does.  

Feeling Fat

As a CFer being "fat" is a good thing.  It means you have a cushion for when your lungs decline so that if you do lose weight you won't get into that bad low weight zone.  For me, my comfortable cushion is around 114lbs.  I always felt like I had a harder time breathing when I was any heavier than that.  And for years I never had to worry since it was rare I got that high.  I was normally around 107-108lbs, that was about 3.5 years ago.  With that I would eat as much as I could when I felt like it.

Now....I am at a whopping 128lbs.  14lbs above my comfort weight and 20lbs above my normal.

But you are probably asking how my normal weight can be 107 when I haven't seen that in 3.5 years?  Well the answer is actually simple.  3.5 years ago I started on anti-depressants.  All of a sudden my weight was not an issue.  I put on weight and kept it on for the first time ever.  I was consistently around 114-117lbs. And more recently 118-120lbs.  I was not happy with the 120lbs and tried to lose some weight to no avail.

Then 4 months ago I was put on another weight gainer pill....a hormone replacement drug for my hysterectomy.  From that I put on 8lbs in 3 months.  WOW.  That is the LARGEST gain I have ever had in that short amount of time.  I tried to blame a full gut on the weight thinking there was no way I could possibly gain that much any other way.  But after several clean outs and not loosing more than 1-2lbs and then promptly re-gaining it, I knew it was not pooh.  It is REAL weight.

I have recently stopped the anti-depressants so I could shed a few pounds and also because I feel like I am at a place where I don't need them anymore.  I have some on hand if I get all crazy again.  But I have faith I shall be OK.  I have also decided to stop the hormone replacement pills.  I did not want to start them in the first place but both the CF doctor and gynecological oncologist who did the surgery insisted I needed to be on it. I understand their concerns but I had no menopause symptoms and didn't want to add another drug.  I reluctantly agreed and I think after 4 months I am OK stopping it.  Again, I can restart it if I feel I need to.

The real reasoning behind the change in meds is I feel fat and gross.  Today as I was looking at myself in the mirror while walking on the treadmill (why do they put mirrors there anyway?) I felt like I was staring at someone else.  Who is that person with chubby cheeks and a gut?  That can't be me?  I am not that heavy.  But I am.  That start of a double chin and pudgy gut IS me.

I can hear you all saying that I have lost my mind.  That I am not fat or pudgy and that I still look the same as I always have.  And in a sense you are right.  I am not fat, not by anyone's standards but my own.  But that is just it.  MY standards make me feel fat.  I am not comfortable with my weight.  To go from a size 4 with a belt to a size 6 with a button that won't button is a huge blow to the self esteem.  And sure I could buy new pants that fit me, and sure I could buy new shirts that aren't so tight on me, and sure I could go broke doing this, but who wants to?  It was different when I went from a 2 to a 4 because that was great.

Now I just feel like gluttony has taken over and I don't want to feel that way anymore.  When I get dressed in the mornings I want to feel amazing.  I want to look at myself and smile and know that I look good.  I don't want to wear sweat pants all the time because they are more comfortable and don't dig into my stomach.  I want to be comfortable with myself and how I look.  Whether that means I need to lose 10lbs or 20 to get to were I feel comfortable, it will happen.  And if my doctors get angry they can.  But in the end I am the one who has to be comfortable with myself, not them.

**No I am not doing anything drastic.  I don't want anyone thinking they need to call someone to make sure I don't get all bulimic on you.  I want to be comfortable with myself, not a bag of bones**

Pulmonary Rehab and CFRD update

Friday was my first day of pulmonary rehabilitation.  It was not too bad.  I enjoyed myself.  Basically it is monitored exercise, well not basically that is exactly what it is.  You walk on the treadmill, use the stationary bike or the arm pedal-thing and the physical therapist monitors your heart rate and O2 sats and makes sure you aren't gonna pass out on him.

Our therapist is awesome. I really like him.  Very friendly and outgoing and really enjoys his job.

There were 3 of us on Friday but will be 4 on Monday as the one woman was sick.  So far I am the youngest person.  Not surprised.  The older lady is on O2 and has COPD but recently had pneumonia and now needs some rehab to get back her lung functions.   The other woman I am not sure about.  She seemed OK with great O2 and heart rates until she started walking on the treadmill and then she plummeted and almost passed out.  Very strange.  She had also never used a treadmill before so he had to show her how to walk on one.  That boggled my mind but I have to remember not everyone has grown up using these things for medical purposes.  The older lady asked if I had had pneumonia and that was why I was there.  I just said no.  I figure in time I can let them into the whole world of CF and lung transplantation.

Diaphragmatic breathing is also something he is teaching everyone.  Luckily my old Dr H was great about pushing this and by now I have mastered it.  So at least that is one less person he has to teach.

As far as me, my O2 was decent, not going below 92% but my heart rate got high at 1.5mph on the treadmill so we stayed there for 20 minutes.  Over time it will get better and I will be able to walk faster and longer while having a not-gonna-keel-over heart rate.  I am glad to be out there and exercising and hopefully when the 18 classes are over I can continue on at home or maybe even find a cheap gym to go to.  I will be on a schedule by that point so why not right?

My only issue, and this is something that of course will get easier with time as well, is my sugars plummeted after exercising.  I happened to check when I got to my Jeep just to see since I know it can make your sugars lower.  I was at 46!  I quickly shoved 2 jolly ranchers in my mouth and hoped it would up quick.  I didn't even notice the low.  After 15 minutes I was up to 113 so I wasn't too worried then.  But shit like this I wish I had been prepared for.

I had an endocrinologist appointment on Tuesday and I walked away from that knowing less than when I walked in.  Only thing good that came from it was blood work to test me for Celiac's.  I was not happy with her at all.  I felt like she was saying my positive results on the OGTT were false and that I am not CFRD.  May be so but lady I drop and have highs so apparently something is off with my pancreas beyond the normal shit.  She said I don't need insulin, which I was expecting since I don't get really high (only with high sugar things like soda and donuts) and I have lows on my own (see exercise lol).  But telling me nothing of any use as far as diet, what to eat with what to avoid highs, or lows, and saying I don't need to come back for 6 months is not helpful to someone who has just been told they have diabetes.  Though if I notice I am over 200 often 2 hours after a meal or I go over 250 once, 2 hours after a meal I am to call her prior to the 6 months.  So I guess it is a wait and see where this goes diagnosis.

That is about it for now.  HAPPY BIG GAME DAY TOMORROW!!!!!! (since we can't say S*per Bowl anymore lol)

Cancer and Lung Transplantation

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

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

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

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!

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

Piper's great blog post

Read it and spread a little good holiday cheer :)