Skip to main content

Ugh, the good, bad, and ugly.

Good and Bad.

I love doing Hairspray and because of the Casts openess and acceptance of me doing neb treatments in front of them, I 've been staying way healthier than I usually do during plays. So no clue why this happens to me once in a while, but I kinda noticed how my legs were sore all day yesterday. Then as the night progressed I was even more sore. I kept thinking, oh its just from all the dancing. So between, being sore and finding out my good friend, Laura (with CF) is back in the hospital, I wasn't as cheery as normal. BUT, the Cast of Hairspray always knows how to put a smile on my face and I still had a FANTASTIC time last night.

Sore from dancing, I wish.

Nope. I woke up this morning barely able to move. I feel like a Mummy when this happens to me!! I also tend to get a fever and pink spots and swelling in my legs (as it gets worse). This happens to me once in a while. I will be so sore that moving makes me cringe or cry. When I was 12 I remember my dad carrying me everywhere.  Right now, its not too bad and I hope it stays that way all through my peformance tonight.

I want to blog about all the aspects my CF affects my life. And unfortunately, this is one of them.

In college, I had some awesome roommates that would help me out (Stacey, THANK YOU)! The last time I had a flare up was last fall and I realized how fortunate I was to have roommates and family always living with me up until this point. Last time, I didn't even want to get up to make my meds/ do my meds.

This time I have to do everything to keep my health at its top. I always give 100% during a performance and I can't do it that if I'm not keeping up with Meds.

What makes this happen to me?
Doctors aren't really sure, they think it has something to do with the liver not properly working and an excess of bacteria building up and crystalizing in the joints. The fever shows I have a bacteria my body's fighting and this is how my body reponds. I usually just wait it out.

If the spots show up later, I will take pictures for Dr. B, cuz he wants to see them (ha, and I can't go all the way to Chicago today).

We'll see what happens. I'm hoping that it just goes away, or postpones itself a few days. Sometimes it only lasts a day or two and sometimes 5 days. I'm hoping this is a 1 day thing! :-)

I will keep you all updated.

Comments

  1. I appreciate your telling it like it is with your experience including the not so fun stuff like pain. Will be sending you good vibes for your performance tonight and crossing my fingers this is one of the 1-day sessions!

    ReplyDelete
    Replies
    1. Thanks! yeah, the point of the site was to be honest about what its like for me to have CF. Ps. your vibes worked. I was only a little stiff and not much pain at all today; I performed at my full 100%!

      Delete

Post a Comment

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...

LOTS, LOTS, LOTS to Tell!

Doing What I Can: People can tell me " Wow, how do you keep up with all that" (referring to all my meds). Sometimes people tell me "That's so awesome that you are doing all that".... Well, I guess, but not really. I just do what the doctors tell me, I know its the best chance I have to living a longer fuller and better quality of life. Plus I have lot of help from Andrew, family, and friends! Right now the main thing I'm working on is: 1. Keeping my lungs at 56% (since my last appointment ) AND 2. following the dietary restrictions the GI specialist gave me (read about that appt here ) & I'm keeping my Food Journal for him to look at. Here's how that is going: Okay...  For the last 7 days I've had no meat in my diet. I really miss my meat and to be honest it didn't help a lot. This week starting today I'm no dairy for 7 days. Then I'm no meat and dairy... Then no gluten for a week. I go back to the specialist in 5 weeks. I...