Wednesday, February 29, 2012

Breathless Bride: Dying to Breathe (TLC Special)

I cried when she walked down the aisle.

I laughed and nodded when she asked why she wore a bra that day (as they went out shopping).  I hate wearing them because they restrict my breathing.

It was hard watching.  I could feel her pain when she was coughing with no end in sight (though not to the extreme she did of course).  Its scary to watch someone with your disease, on TV, as a real person, dying.  Its no fun, and though I enjoyed the documentary, I almost wished I hadn't watched.  I don't like seeing my fate played out before me.  Its scary.

I cried when she got her new lungs and was able to leave the hospital and start her life with her new husband.

Tuesday, February 28, 2012

Day Two - Exercise Regime

Two days in a row!  That is a first for me!!!

30 minutes of step aerobics today as I watched last week's NCIS-LA.

Off to shower and eat a healthy lunch.

Too bad the little wii guy said I put on 1.3lbs since yesterday....stupid machine lol

Monday, February 27, 2012

Day One - Exercise Regime

Today is day one of my new exercising self.  I NEED to exercise.  Especially with no insurance I need a way to stay healthy so I don't end up sick before my Medicare kicks in June 1st.

I want to log each time I exercise so you all can hold me accountable.  On Facebook a few of us CFers are in an exercising group for CFers (Exercise Accountability) but it hasn't pushed me the way I was hoping it would when we started.  But maybe facing all of you I will be more willing and determined to do it.  Also I have set a goal and reward for myself.

By March 30th I have to have exercised at least 3 times a week each week.  If I reach this goal I am allowed to get my hair dyed by the professionals.  I printed out a calendar so that I chart my results.

So for day one:

20 minutes of step aerobics on the wii fit.

Saturday, February 25, 2012

Laughing Physically Hurts

How can this be you ask?  I shall tell you.  :)

When I laugh I get actual pain in my lungs.  Right below my boobs, where your bra would sit.  It is pain.  And I don't mean just like sore from laughing I mean actual pain.  Its very weird and only happens when I laugh.  I do on occasion get pain there, but not like when I laugh.

Ahh progression of lung disease...

Friday, February 24, 2012

Medications...Today vs 3 Years Ago

First order of business is check out this post by fellow bloggy Cystic Gal.  She talks about our mutual influence in a semi-recent online study of influential CF bloggers :)  Yay to us!

This study, conducted by the makers of TOBI, is pretty nifty.  The data was taken in 2009 when I was still a fairly new blogger.  My stats have changed since then.  And the fact that I now have Twitter too.

But check it out yourself:
2011 CLIO Awards

This award/research thingy got my mind thinking last night.  Coupled with my lack of health insurance (see previous post about that one), I had much to ponder as I tried to fall asleep last night.

What did I ponder about?  Medications.  Or in my case lack of medications.  In reality I don't take that many CF medications.  Most of the daily pills in my sorter are vitamins and supplements.  For example....I take Women's One A Day multi vitamin, Calcium, Vitamin C, Vitamin D, Vitamin E, Motrin, stool softener, and melatonin.  The medications I take are Singulair, Prevacid and Azithromycin in pill form at least.  Once I stopped the anti-depressant and the hormones I have nothing!  There is Creon 24 with meals, DuoNeb 2-3 times a day, Pulmozyme once a day, 3% 1-2 times a day and Symbicort.

Gone are the days where I was taking medication after medication.  No longer do I take oral antibiotics (2-3 at a time) or inhaled antibiotics (off month I added Cipro oral).  My routine seems so slim compared to so many others.  I can do my morning and night treatments in an hour each because I don't have to use all that extra stuff.  Sounds great huh?  But the reasoning sucks.  My lung bugs don't respond to the orals like they used to, and my lungs themselves don't like anything being inhaled into them besides the ones I do already (the exception might be Symbicort.  I have noticed some tightness when I do it vs when I don't).

Its so weird to me, to read about 3 hour treatment schedules for other CFers when I barely do that in a day.  But I have been there. I have done the 2 hour treatment, the 1 hour rushed treatment and the finish in the car treatment.  I feel like the backwards patient.  The one whose regimen gets easier as she gets sicker.

So. Freaking. Weird.

Friday, February 17, 2012

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.

Tuesday, February 14, 2012

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.  

Monday, February 6, 2012

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**

Saturday, February 4, 2012

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)