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

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

My Dad Deserves More Than 1 Day!

Happy Fathers' Day to ALL the Fathers out there! I wanted to post a list to why I'm sooo thankful for my dad (its faster, bit more fun, and I gotta get ready for my Dad's Cookout still)!!! Top 15 (10 isn't enough..lol) reasons Dad should get more than a day of celebration: 15. He loves meeting people, making friends, and is quite social. 14. When something goes wrong, he is the person that can say the right thing to make me smile :-) 13. Is always honest. 12. Few yrs ago, he gave me HIS car, (so i could get back and forth to work/play practices) He rode his bike to work and back (he enjoys it too tho) 11. Best Sense of Humor! 10. He never complains, ever! 9. Growing up my Dad worked 6am-3pm at one job and 4:30-10pm at another. 8. Dad still managed to go to 99.9% of my performances 7. He is the least judgemental person ever, he talks to & helps everyone! 6. He is a pro at making doctors, insurance companies, & hospitals do ...

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...