Friday, August 26, 2016

Seriously? Another New Name....

I just took a second to update my About Me file and while I was writing I realized just how much I needed to bring things up to date, my family has been extremely busy the last 6 months.

So, last year was a hugely expensive year for our insurance company. You know when you walk away from looking at your EOB's and even you feel sticker shock (and we didn't have to pay) it's time to tone things down a bit. We had great plans until this year hit.

So far my husband has been diagnosed with hearing loss, Psoriasis and then Psoriatic Arthritis (because there wasn't enough AutoImmune Arthritis in the family). My daughter was diagnosed with Autism and ADHD on top of the EDS she already has and next February she will be having testing done for Dysautonomia (per my NeuroEP's directions). I was diagnosed with EDS Type 3, Hyperadrenergic POTs (of course the rare type that makes absolutely no sense, go me!) and IST. So our great plans didn't turn out quite as we had hoped but we still managed to save the insurance some money so far this year.

Needless to say our priorities have been elsewhere and now you know where I've been for the last 6 months (trying not to lose my marbles). I would love to say that each and every diagnosis was easy as pie but we pretty much know that never happens. I'm still trying to get my insurance to pay for genetic testing for other types of EDS ($10k and my second denial, oops) thankfully it can also be proven by clinical testing. While I'm not a contortionist I can still bend a few things in weird ways, lucky me.

My poor husband has been itching his skin like crazy. My dad also had PsA so I knew how bad the itching could be, I've never heard anyone beg for Methotrexate but he did. After about 6 visits with his Derm and 6 useless topicals he was finally able to get in to see his Rheum and got his wish for Methotrexate. Usually Friday night is date night, in our house it's Methotrexate Night, he takes the pills and I get a jab. Even at 10mg he is already starting to feel the itch go away, thank goodness. I'm not crazy about both of us taking Methotrexate at the same time but hey, our genes are what got our daughter in this mess to begin with...

Our daughter was finally tested to see what was going on with her and we were surprised to find that she had both ADHD and Autism (we expected she was on the spectrum somewhere).Thankfully, with that information we were able to get her the help she needed with an IEP that also covers her EDS. If needed we will add POTs to the list in the future.

As for me, I did a lot of doctor chasing for my POTs/EDS diagnosis. No one wanted to diagnose because I wasn't as bendy as they would like and they didn't want to hurt me. So four doctors later and a go home you're deconditioned (code word for fat and lazy) I finally got to a doctor that deals with a lot of EDS patients. He easily bent my finger back and said there it is (he did a few other movements too) I nearly cried. Then he told me I needed to stop all my meds for a tilt table test and then I did cry, all the way to the hospital in the ambulance when I had my first ever med withdrawal panic attack (I do not recommend this). After 5 days with little to no meds I wasn't able to take the test, ugh. We tried again 2 weeks later with some meds still on board (he wasn't happy with me but I wasn't going on a 72 hour hold for a psychotic break). Of course my body was contrary as always and instead of my BP going down it went up. Uhm, what??? Pretty much what he said too. Interesting thing, there is a rare type of POT's where your BP can go up or down, I'm so special. But it didn't stop there, my BP spikes while it's up. Which finally explained the chest pains I feel which no one could figure out. I got started on Verapamil and I've been doing ok so far. The EDS, seems like everyone is trying to ignore, of course from what I've heard that is normal treatment.

So, you may ask why the name change. AutoImmune for my JRA/RA, Systemic because EDS is sometimes called a Systemic Disease because it can affect all of the different systems in your body and Genetic because JRA/EDS/POTs can all be genetic or hereditary, I want to bring all of the illnesses I deal with together on one page. I know a lot about RA, I have a lot of experience. I know nothing about EDS and POTs, I'm hoping as I begin to research and learn more I'll be able to pass on this info to you so we can learn together.

Surprise, I have more co-morbidities I will be writing about. These illnesses seem to bring more with than just themselves. In no specific order I have:

Secondary Adrenal Insufficiency
Congenital Fusion at C/2-C3
Sjogren's Syndrome
Hiatal Hernia
Spina Bifida Occulta at L5

Ok, maybe there was some specific order head to toe..on days that I may have an easy RA day I may end up having a horrible Sjogren's day (scratchy, blurry eyes = no bueno). Some patients talk of good days, I very rarely have a day where something isn't going wrong but thankfully I have learned to laugh about it and be thankful for what I have. When I forget gratitude I get into trouble so I really make an issue of remembering to be thankful.

I'm hoping the new name will help me to become more than just an RA blog which is where I'm kind of stuck with my social media right now. I live with it all I want to be able to write about all of it. I hope you'll hang around and learn about the ups and downs of living with AutoImmune, Systemic and Genetic diseases.

1 comment:

Bruno Manhães said...

Stay strong! From Brazil