Saturday, March 14, 2015

Daily Compliance & Arthritis (video too)

The Big Topic:
(let download for video below)

Lots of people in the CF community talk about being compliant with their meds. It's really important, trust me I've seen the difference. I know some CFers keep track of the number of days in a row they stay compliant,
but I don't keep track exactly. Why?

It upsets me too much when I miss one and have to start over. I'm very competitive (which is funny, considering I've never been in sports). But more than competitive, I'm really tough on myself.  So instead of counting days, I just do all the meds I can actually do. So since my hospitalization in January I can say I've done all the meds I could do.

Why can't I do all my meds. Lots of reasons. If I'm visiting someone, one spills & I forget to bring extra. If the insurance or pharmacy hold up my refill an extra day or two (causing me to lose 1 or 2 days worth of that med).

So as long as I physically have the medication I do the med. That's my new philosophy. More activities that I need to be compliant with would include my exercise and doing the clinical trials. I never mess up while clinical trials and I try hard to keep up with exercise.

Right now, I've gone to the gym once in the last 5 days, but I have been walking every day (either on treadmill or around stores). I lift little arm weights too. I think yesterday's running around (on Andrew's day off) was too much for my body. We did our Wedding Registry and it took a while. My body freaked out and had a CFRA flare up. What's CFRA? CF-related Arthritis, which I first started dealing with as a child.

I remember my friends and teach would have to carry me around, when I couldn't walk.

My doctor said it was CFRA when I was 12, which is when I had a particularly bad flare up. Usually when I have these episodes, my joints freeze up and it hurts to move at all. I lay around and just feel miserable. I get flu-like symptoms too, like a low grade fever. Andrew takes good care of me when it does happen, but I always hate laying around and not being to even dress myself. (click on Arthritis label on side for more info)

It's so frustrating, well last night it started with the fever and joint pain, but luckily today it's not as bad. I think I may not have to deal with a whole big flare up (which usually last 3 days or so). So whew...

However, my joints starting feeling achy a few days ago, so I took it easy on working out. I'm hoping to get back to it starting Monday! :-) That conversation I had a while back is sticking with me (read about it here). Also, Monday I have my GI specialist appointment (yes, the new one that Doc B recommended!). Its at the same place as the other Doc though, so mom is coming again... Just in case.. (read why I'm lil timid to go back. right HERE).

Then on April 1st I have a Clinical Trial Appointment! Yay! I get to start the inhaled Mannitol test over again. We had to put it on the back burner when I went into the hospital in Jan, but since my last appointment was sooo good, Doc said I can start back at it.

I love doing research trials, I love being an active part in curing CF (whether trials or fundraising). So exciting!  Here are two amazing meds we have thanks to research! Pic: Cayston & Colistin

So Monday I have my GI appointment, plus back at working out more hardcore, and soon I'll be doing a clinical trial. Keeping compliant with the Trial, exercise, and all my medical treatments feels like a lot and honestly I get overwhelmed sometimes. But, I know it's just a matter of keeping a routine. Yes, we live by a routine, I need it to keep up with everything.

And here's why I need the routine (watch this video to understand):





I'm just starting to get more involved on YouTube, BUT I'm more active on Twitter & Facebook.

I want to keep on top of it all and the be able to DO TWO 5Ks this Summer! One at the end of May (for Colon Cancer, which my Amazing Uncle (who is almost a third parent/ Best Friend to me) had) AND one for ALS in July, which my friend Sean battles every single day (read about Sean's Battle here)

Both are around the Princeton area, so if anyone wants to join me, let me know :-)



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