Skip to main content

New Purple Vest, Insurance and all that Jazz

And All that Jaaaaaazzzzzz...

It's getting close to my appointment with the Rheumatologist! Very excited to get this figured out and find the right meds! Also, right now I'm on anitbiotics ( not IV, just oral) and prednisone. My lungs have been pretty crappy lately, so hopefully this round of meds will boost them back up!

My weight has been going up though, since my Boyfriend has been cooking me a lot of meals lately (ps. he is amazing cook)! Sure beats my grab a granola bar on the go meals.

Also, good news! I got a new vest, foot pump, and tubes (not a new machine)... Bummer, but at least I got it fixed, so I can use it again! I got the purple vest (my favorite color)! And the cool thing is the new vests are washable! (Picture of: Me in my new purple vest, the old honking machine w/new parts, plus a picture I need to hang, a shoe rack I need to out together, and a black dress that is currently drying...haha sorry bout the mess!)The new machine would have been nice, its half the size and weight. The current one I own is 35 lbs. So I can't take it on traveling...The new machine comes with a traveling case and everything. But $16,000 is too much the insurance is saying... ok..I'll give you that one.

BUT...they are denying my Nebulizer treatment TOBI too, cuz it is around $6,000 a month. They say there is no proof that alternating between TOBI and Cayston every other month helps. But Dr. B says it does. It helps our bodies not build up resistance the one anitbiotic or the other. Keeps those CF bugs on their toes!

So, he is duking it out with them right now, and I have no doubt in my mind he will win the battle! He is pretty much awesome like that!
Nebulizer treatment TOBI too, cuz it is around $6,000 a month. They say there is no proof that alternating between TOBI and Cayston every other month helps. But Dr. B says it does. It helps our bodies not build up resistance the one anitbiotic or the other. Keeps those CF bugs on their toes!

That's all the newest with me! The play I'm in shows in about a week and a half! :-) I get to play a bossy very pregant wife, with a baby I scream at. Should be fun! haha..
Labels:

Comments

Post a Comment

Popular posts from this blog

Time for a Change!

I have been blogging at www.cheriz.org since 2012. So an amazing 5 years! I found my forever career, my husband, my first & forever home! I said good-bye to my Stomach Tube & had some mjor medical transitions!  However, CF affects a lot more than myself now. It affects Andrew, soon we will have kids in the house. To call my blog Cheriz- just doesn't make sense anymore. Coming up with a new name was super hard! However, my new blog is More Than DNA! ( MoreThanDNA.org ) Why did I name it that? Because I am MORE than my CF (or mutated DNA that makes up my CF). My family also will not have shared DNA. Any kids in our house (whether we adopt or foster children or not) will be considered our family & we don't think it matters that they won't have shared DNA. DNA does not define our family or us as an individual. We are more than our DNA! I have posted my first blog post at the new site! But I'm working on moving a lot my archives from this blog over. So it...
Post a Comment
Read more

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...
2 comments
Read more

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...
2 comments
Read more