Wednesday, April 1, 2015

Feeling like a 90 year old


My Body is Older than My Age:

I may be only turning 30 years old on Monday, but I certainly feel like I'm turning 90 instead. Why? well, lots of components affect how my body feels. Whether I'm fighting a little infection (which is quite often) to when I'm run down, and especially when my CF-related arthritis is flaring up.

Which it has lately. I have better days, then I have bad arthritis days. Luckily, it wasn't too bad on Monday. Mom, Ada (my sister), and I went shopping in Schaumburg. We had scheduled this planning trip at Christmas, it was a day to treat Mom w/ lunch & shopping with her girls.

 We took her to Pilot Pete's Restaurant. It's got a aviator  feel, since its in a private airport. The back wall at the restaurant is full of large windows, so you can watch 2 person planes take off and land while your eating. We saw a couple take off and land. Plus, the food was delicious & large portions. YUM!

In the lobby area: they had these fun airplane chairs & a large window that looked down into a hanger where they work on the planes. 





After lunch, we walked the Woodfield Mall (but then my joints were killing me), so we had a break at a Starbucks. We also did Crate & Barrel, and finished up our evening at a Whole Foods to grab some treats on the way home! I think all the walking kicked my arthritis into full gear, but so worth it.

However, this arthritis flare isn't as intense as usual, but has been coming and going for over 2 weeks now! I'm so confused.

It's weird, it is slower and more drug out this time. Usually overnight, my joints freeze up, I wake up sore and with hive like spots all over my legs (sometimes back and arms). But these last two weeks is only the stiffness and soreness happens. I get the low grade fevers still and the weird rash (which I've get sometimes, instead of hives). But I'm also getting bruises this time and my muscles all hurt. My leg muscles have been sore for 2 weeks now. It feels like I over-jogged. Except, uh I haven't been doing my much exercising, just weight lifting.

I'm sooo tired and my body just feels like it needs to sleep for a month and catch up. There isn't much research on CF related arthritis. This has been happening since I was a child. When I was 12 years old I had the worst flare up. I was in so much pain ( I couldn't stop crying). I couldn't put any weight on any limb, legs, arms, fingers. I just laid around. Dad had to carry me everywhere. That was when my doctor said he thought it was CF related arthritis. It's hard to exactly diagnose it, since very little is known about it. So they never really did a test to prove it was CFRA, since really you have to rule out X number of other disorders first.

If you read the first part of this linked article it will help you understand exactly what it is: CF Arthritis ARTICLE.

Pics: Here is what it typically looks like when it comes and go (within a matter of a 4-5 days); these are usual flare ups from past.

Usually it's painful to move, but I can power through it sometimes and then try to rest as much as I can later.  I remember tap dancing on stage (crying) with the flare up once. The cast had help me get dressed, carry my bags, etc. Usually its not quite bad enough to be debilitating and I have a high pain tolerance  which helps me deal with it.

I remember as a kid my legs would freeze up and I would not be able to walk, one of my childhood friends, Dawn, would piggyback me around the playground (remember I was a tiny lil thing). My third grade teacher even carried me around. I'm lucky to have such great people in my life, always making sure I wasn't left out!

HOWEVER..
This time, its more of the tiredness, weakness, stiff joints and muscle soreness that is making it hard for me. Its affecting my back/ spine a lot too now.  Plus, with the fevers my usual red sun burnt cheeks are even more intense. Maybe its a little different, because I'm older. But I just need to figure out what meds will help me/

Here is what the rash and bruises popping up look like this time:


Pics from last night, just lots of bruises & weird small rash. No hive/spots this time though.



I'm not sure why I don't have the hives this time. Its really weird. I need to go back to a Rhuematologist. I went in March of 2013 and they tested me for a bunch of diseases, including a few that run in the family like Lupus and Ankylosing Spondylitis.  But I never got the results, I forgot about the blood tests & doctors office name even, because in the next couple weeks I got hospitalized for a virus. It was pretty scary passing out from lack of oxygen, running a 104 fever, and being told I may need a trach if my throat closes off with the lesions. Then after that I also had 3 hernias which required triple hernia surgery and some recovery. So I was pretty busy and didn't remember to check the results and their office never called me.

I can't remember who I went to, but hopefully I don't end up going to the same place again. I'd like to have this CFRA officially diagnosed  (or whatever it is) and get some meds to help me. No, not pain meds (I refuse to take them, regardless of my pain) - thanks to my deadly allergy to morphine, but I may need meds that hopefully help keep my arthritis from flaring up.

CFRA is one of the areas that needs more research for sure, so many CFers tell me they deal with the same problems. Yet, very little has been done to help us live with it. Which is frustrating considering when we are in pain moving, we can't exercise (lowering our lung function). Also, during these flare ups it feels like the flu, so fevers, fatigue, soreness, etc and we don't feel like eating or doing anything (more weight loss and lung function decrease).

CFRA needs more awareness for sure, it impacts our lives so much!

Thanks to everyone who rsvped to my bowling birthday party/ fundraiser! I hope I can bowl Saturday, otherwise I will be a cheerleader/spectator eating lots of yummy cake!

Follow along my journey on facebook: "Like" my journey on FB! and scroll down to read more about what else is going on in my life, besides CFRA problems :-) There is some good stuff too! lol

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