Friday, July 22, 2016

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)


  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 :-)

    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!