Skip to main content

Just Always Waiting

Secondary Medical Problems:


Well, it's been a while since I blogged. Something EXCITING though is we moved into our new home just under a month ago. By moved in... I mean Andrew and I started living there without our furniture. We finally got our furniture and our INTERNET a few days ago.  We had to do some work in it first, before we moved everything over.  I also had 3 Real Estate closings in the last month, plus other medical problems. t has been a busy time (with no internet), so sorry about the gap.  :-) Update: Basically I'm just waiting for everything.

I'm waiting for my eye surgery on September 14th. I'm waiting for insurance to pre-authorize, approve, and move forward with the Orkambi.  I'll wait until after my surgery to start Orkambi, since the side effects can be pretty horrible. But I will discuss my going on Orkambi once I have the "thumbs up" from insurance.

I'm excited to get my eye fixed finally and I'm very excited to see if Orkambi helps me and makes a difference. Plus, I'm going to be setting up more appointments to figure out all my GI problems and arthritis problems (and finally/hopefully get an official diagnosis for the problems).

The older I get the more I realize my secondary problems are becoming more of an issue. I always have dealt with the lung and gastrointestinal problems since I was a child. I get my liver checked every 6 months and keep an eye on my bone density, since I have struggled with those in the past. Plus, Docs have always said I have CF related Arthritis, but I really need to get an official diagnosis, because I think I'm almost at the point where I need meds for it. I'm trying not to take any extra medication and don't want to add more meds, but if I DO need them in the future, I want to have my ducks in a row. ya know?

I do have days where I have trouble with stairs or feel like my body is 20-30 years older. I have trouble getting up off the floor.Then there are the flare ups, where my joints freeze up and I can't move at all. I usually get a fever and my joints kill me. It's gotten bad enough in the past that I needed help changing my own shirt, because my elbows/shoulders couldn't bend. I've been stuck in wheelchair before from it (usually when its really bad a rash appears with it).. Lately my joints just have felt old and stiff. Not frozen. So not sure if it's something different or not.

After a bad fall a few months ago I joked about getting a life line bracelet. However, it made me think about the medical allergy alert bracelet I had talked about in the past.  Here is my thought: I'm deathly allergic to morphine. Last time & only time I was given Morphine I had anaphylatic shock and my organs starting shutting down. So it's bad to say the least. I always tell everyone I can't have it, but the ONLY reason certain people have wanted me to get a med alert bracelt is because EMTs supposedly use Morphine in the field. Which means if I'm unconscious from an accident, etc they would need to know not to administer pain meds. It's seems pretty rare that would happen though, and I absolutely hate bracelets. I never wear them. They never fit right, so I'm really torn. I know others would feel better, and it is smart, but ehhhhh.... So I'm still debating on that... IDK.

Otherwise, I'm just excited to get my health all figured out!!! Andrew and I hope to really make some solid "future family" plans. Including looking into surrogacy, adoption, and fostering in September/ October once my body has had time to adjust to the Orkambi and my health is all figured out. And in the mean time I will be working on our house, doing Real Estate, and power walking. I'm doing another 5K on July 30th for suicide prevention in Peoria, IL. All proceeds go to the Hult Center for suicide prevention programs. I'm trying to find more Central IL 5ks for causes too (so if you know any let me know)






Comments

  1. I think you should have a med alert something.. what about a pendant on a chain? God forbid you should be in a serious accident the most important thing is your medical alerts. I think :-)

    ReplyDelete
    Replies
    1. I agree, I have been looking into options. I really don't wear any jewelry except my earrings. But, I'm going to break down and get used to a bracelet. I can get it sized and find one I really like :-) Thanks for sharing! You are right!

      Delete

Post a Comment

Popular posts from this blog

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...

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...