Skip to main content

Update on my Mummy Disease

My Mummy Disease Update:

My ankles are sore, but otherwise It's almost gone! I have two big spots left on my feet, but otherwise the spots have cleared up. I can't decide if I want them to stay away for good, or (this sounds bad) hope they come back next weekend, since I have CF clinic on Saturday! If they did come back Dr. B could see them in person. But, I don't want to deal with them anymore...ugh.

I had them July 19-21st ish, then they disappeared. Re-appeared at night on the 28th, disappeared the next day and re-appeared Friday, August 3rd. Why won't they go away for good!

I'm sorry to everyone I missed this weekend. However, the weekend turned out better than I thought, my parents drove me to my sister's apt in Peoria today. So I got to see where she lives,etc.

I'm very proud of her, she worked very hard in school at Augustana (Music Ed Major- Majoring in both Choir and Band, K-12 certified) and it paid off. After sending out only 5 job applications and doing 3 interveiws, she got offered a job the following day at one of them. BAM, Job!

I'm actually trying to find more jobs. I want to save some more money for Grad School. I hope to go to Grad school next year. I'm debating on applying this Jan or Fall semester.

We'll see. I'm glad my mummy disease is gone for now. I think if Doctors find out it's not really CF-related Arthritis, we should name it "Mummy Disease," hahaha!

Anyway that was my weekend and hopefully I will do okay at Clinic Saturday and Mummy disease will retire from my system for good! :-)

oh and I will be jogging tomorrow night!

Comments

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...

Would 20 big Macs help?

Big Macs huh? I've had a couple customers at work mention things like " you're so skinny, you probably could eat anything. and still look that way."  Which I always just respond " yep, I guess I'm lucky" But I always think... Lucky.. lucky. yep I'm lucky I'm struggling to stay above 90 lbs right now. I have a stomach tube in me, have had it for 12 years and will have it for the rest of my life. I'm supposed to eat at least 4,000 calories a day. But I also have to fit in exercise to keep my lungs active, plus make up for all the calories that I burn. I get easily tired and if my weight drops suddenly it usually means I'm sick again. But since I'm skinny, yep I guess I'm lucky (rolls eyes). I hate telling people that I'm lucky. I'm not lucky when it comes to weight. Here are some phrases I hear that drive me nuts: - I'm lucky cuz I can't gain weight - you need to eat to put some meat on those bones...     ...