Skip to main content

Running Against The Wind

I have never been like everyone else. I am girly, I guess, but I love four wheelers and fast cars.  I enjoying dressing up but I'd rather be in jeans and a tshirt.  I hate high heels.  I love spicy foods.  I don't like to relax, I like to always be on the go. 
When it comes to my medical history, nothing has ever been typical or normal.  Everything I have is something no one has seen before.  When I dislocated my shoulders, the ER doctor had to read a book on how to put it back in because it was dislocated in the back not the front.  When I was little I had headaches all the time and no one could figure out why, it felt like there were marbles in my head.  No shoulder surgery was easy, and everything I ever had done, there was a complication.  When I had my tonsils out I got really sick, lost 15 lbs., my throat started bleeding about a week later and I ended up in the ER.  When it comes to my dystonia, once again its not typical or normal... not that dystonia is normal to begin with.
I have been having a lot of problems over the last month. Within the last couple weeks, my hand and foot curled in.  I immediately called my neurologist to get me in but he was on vacation so he gave me the name of someone else to help me.
On Monday, I drove to Dartmouth to see a new neurologist.  He changed my settings to a "typical" dystonia setting, hoping for some relief.  What I didn't understand was I am not "typical" and these kinds of treatments never work for me.  He said him and every doctor there had never seen settings like mine.  As the day went on, my hand and foot got worse.  By yesterday morning, my neck was so stiff I could barely turn my head.  Each day it has been getting a little worse. 
The next plan is to go back tomorrow to have the settings changed back to where they were when I went there.  I am hoping they will change it a little more so that I can have some kind of relief.  The pain is just unbearable. 

Hailey had a great 7th birthday and is really enjoying first grade.  She had her physical yesterday and is very healthy! She is a very happy little girl.

As far as Cody goes, he will be going in on October 16th with a vascular surgeon and ENT to move his carotid artery and have a pharyngeal flap.  He is very much like me and likes to do things his own way.  Nothing is ever easy with us!  Send us lots of love & prayers to get through these next few weeks! <3 br="">

Comments

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...
Post a Comment
Read more

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...
Post a Comment
Read more