Friday, September 12, 2014

3 Years, NO hospital stays -- WHAT?

And a General Update
I've been wanting to write for quite some time. I just never seem to find a topic I want to talk about. But I guess its time for a general update. I downloaded the timehop app and have realized it has been three years since my last hospital stay. 

The ER trip 9/4/11
It took 3 ER visits to get admitted (one on the 4th and 2 on the 5th)
I've been thinking about that time. I cant believe its been three years. Three years of NO hospital stays. How does that happen? I was having one hospital stay each year from 2008-2011. How am I not having hospital stays anymore?

Oh trust me, I'm not complaining. I am happy to be hospital stay free. I just don't get it. 

TEE and Cardioversion 9/8/11 
It worked! How did it work? Nothing ever lasts on me. My fontan didn't last, my maze failed leading to said cardioversion. How is this lasting? It's just a surreal experience. Its crazy that now my heart is one of my smallest concerns. My biggest concern is my muscle pain. 

As some know I was diagnosed with Psoriatic Arthritis on May 28th 2012. Well recently the diagnosis was changed to Rheumatoid Arthritis. I'm one of a small percentage of people who doesn't show up in blood work.

Life has been interesting. I've been given oxygen at night.

 I was diagnosed with a fused vertebrea, C2&C3 are one. Its causing a lot of neck pain. We tried botox, it made the pain worse, so we stick with pain meds. I was able to go to Massachusetts and meet my autoimmune arthritis/heart sister Hailee. It was so fun!! I love that little girl.
I got to see some family too

I moved again, to Brigham City, got myself a nice little house, and some stitches.
Razor blades and coumadin don't go well together.
I had such a pretty bird for a day. 

I love my tiny house. It fits me perfectly. 

I've been trying to attend as many CHD events as possible in between drs apps and bad pain days. I love these kids. 
 Reid and I when I was at his house
Baylee and I at the heart walk.
 Visiting Teagan at the hospital while he waits for a new heart. 

I love being able to give these parents hope, and letting these kids know they aren't alone. That its tough, but we are together in this fight. That we are heart sisters and brothers.
  AND last but not least, a picture of my niece and nephew, because they are beautiful! I don't see them enough, I love them!!!!!!!
Chase is 3! I cant believe it. I remember my brother and SIL bring baby Chase to see me when I was in the hospital. 
 Alyssa is growing into a beautiful little lady. I can't believe she's 2!!!