Skip to main content

I'm not a Mummy anymore!

I'm not a Mummy anymore!

A couple posts ago I discussed how once in a while my joint gets so stiff I feel like a mummy (like I had been wrapped up so tight I can't move). Last night, the spots on my legs reached there worst point (in the last 4 days). However, I saw Dark Knight Rises and then had people over at my house, so I basically sat around most of the time (which is good). The spots started to go away around midnight and by 4am (when I woke up briefly) they were gone. I decided to get a bit of jogging in, incase they came back. I did a mile, then slept again. I, off and on, napped and did website work all day.

I slept so much today that now I'm awake at 11:30pm. However, after I blog this I'm going to try and sleep, so I can get back to my regular routine.

I'm so glad that I can move again. My CF-related Arthritis makes CF hard to fight. When I can't move, I'm more prone to skipping meds, not getting up to eat, not jogging, and most nights fail to make my stomach feeding.

I need to figure out at a way to keep up with my health routine while I have my arthritis flare ups. I know some CFers take pain meds, but I don't want to have to rely on pain meds. I had my share of pain meds in 2003 (when we found out I was deathly allergic to morphine) to last me a lifetime.

I'm ashamed I failed at taking care of myself that last fews days due to my liver issues, but it's the truth. I need to keep reminding myself that by not getting up and dealing with the pain, my CF is winning 1 battle with me. AND i refuse to let that happen.

I will be stronger next time. I do better each time and have been learning how to deal with stuff while living on my own.  I thought all those years I had roomates I was totally independent, but its a lie. My roommate, Stacey, helped me a lot. <3 you Stacey!

Live and Learn. I have more to learn, but each day I learn more and more.

(Below: pic of spots earlier yesterday/beginning stage spots)

Comments

Popular posts from this blog

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am.  I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it  has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released!  VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...