Sunday, September 5, 2010

We've Moved!

Due to a massive amount of spam in the comments, I started a new blog (thanks for ruining this one jerks).
You can find it at The CRPS Girl (Click Here)

Wednesday, May 12, 2010

Why I don't update much

I want to update this blog more. I really do. I have 17 saved entries that I never finished. Why?
Because I get halfway through and think no one wants to read this! With RSD, the bad days outweigh the good sometimes and as someone who has an obsessive need to put a positive spin on things, that gives me little writing material.
But this isn't supposed to be a blog about just the good side of CRPS/RSD and SCSes. It is about the entire thing. The downs as well as the ups.
So, to catch everyone up to today. I have continued to get worse, the CRPS is not in my entire upper body and my left thigh and knee as of today. I will get to that more later.
I had my psych evaluation. It was awful. The doctor's bedside manner was terrible and he was extremely rude and condescending. My doctor later said he was one of the top pain psychologists, but it was very obvious he did not understand RSD. He told me my "bad coping skills" were having a service dog, being part of online message boards, having seen so many doctors (ignoring the fact that I was referred by those doctors) and having the disease as a central part of my life. Needless to say, I was denied until I had either intense counseling or go to a comprehensive program (including physical and occupational therapy, which my doctor has said will do nothing but make me worse). We decided on the counseling and are awaiting the referral. This is likely to be at least a 4-6 month process at LEAST. Unfortunately, there is nothing we can do in the interim for pain relief besides the methadone I'm currently on.
In the time since I've last wrote, I've gotten substantially worse. In my upper body, there is really no "worse" side any more. My right and left sides are pretty much equal. I'm using speech to text software for most things now, since typing is painful. Two-ish weeks ago while I was taking a bath/shower my left thigh started hurting in the same way my upper body did. Dixie (my retired service dog) alerted my brother and he went and got my parents, who helped me get back to bed. I attempted to use a cane or walker but found that it was too painful. Right now I am in a manual wheelchair, but that is little better than the walker. Fortunately, my doctor wrote me a prescription for an electric one, so we are working on getting one now. We have some wonderful friends who are building a wheelchair ramp out of our front door and over our front porch so I don't have to get out of the wheel chair to get out of the house and risk a fall down brick stairs.
Dixie has retired as a service dog for a variety of reasons (you can read her blog for more info) and I am applying for a new dog from a program. I will update on that journey both here and on Dixie and Lola's blog.

Sunday, March 7, 2010

I'm baaack!

I know I seriously neglected this blog. But I found as I got worse that after living through each day, I didn't want to relive it again to write a blog entry.
That has changed. I finally have a diagnosis (Complex Regional Pain Syndrome) thanks to an awesome doctor at Duke. I had a stellate ganglion nerve block this week, which gave me an hour of relief in my left (and worse than my right) side. This also assured my doctor that I am an ideal candidate for a spinal cord stimulator.
A SCS is an implanted device that has electrodes attached to the spinal cord. The electrodes block the pain signals from going to the brain. At least a 50% reduction in pain is expected.
I've been trying o learn as much as I can, but am having a hard time finding personal experiences. So that is what this blog is going to turn in to. I want others to be able to read my experiences as I go through the process.
First up is a psychological eval, similar to the one transplant recipients go through. That has to be sent to the insurance company for approval. Once approved, we will set up a week long trial with an external device. If that is successful, I will have 2 implanted, one on each side.

Saturday, November 7, 2009

Hard Week

This week I saw the acupressure massage lady. Unfortunately, it just didn't go well. She was an awesome lady and understood me. With CRPS, it is so hard to know how something will work since there is so little research on it. For me, the acupressure made me worse.
Honestly, it is a scary thing. I certainly don't blame anyone when it gets worse. No one has a clue. But this week, I can't tie my shoes anymore or grip my toothbrush correctly with my left hand. These days I feel like I have so much more insight into my Deda's life when he had Parkinson's. My mind is fine but my body is not cooperating. I despise having to ask for help for everything in my life. I was the independent one, the one who moved to a new city and was making a life for myself. My life was on track, I was going to achieve my dream and be a vet. I do know now that being a regular vet isn't what my heart wanted but I still wanted to be a veterinary behaviorist. And now I have to depend on everyone else for the smallest of things. My Deda was a strong man who always cared for his family. Then the Parkinson's robbed him of that and I understand how he must have felt. I remember him always trying to do things when he shouldn't have. I understand why he did, I understand how frustrated he must have been every day when his body betrayed him. He has always been one of my heroes but now it is so much more so. Even during his worst times he still said "This too shall pass"

Sunday, November 1, 2009

On the road again....

Tomorrow Mom and I are leaving for Atlanta. I am seeing a woman who does the human version of the Tellington Touch (an excellent acupressure technique that started in animals). She has rave reviews from others who have been in significant pain, so we are hoping she will be able to help me. I'll make sure to blog updates while I'm there.

This weekend was great. Saturday was Halloween and I went to trunk or treat with my Aunt Kay and cousin. I took Dixie with me and suspended the no petting rule and she was a huge hit. Not to mention, Dixie adores kids so she was in heaven. After that I went to my best friend's sister's house and hung out there. I got to see most of my favorite people and I had a great time!

Here is a picture of Lola, me and Dixie in our costumes:

Wednesday, October 28, 2009

At least I have a good excuse this time!

I have been ridiculously busy for someone who can't leave the house on her own. Last Thursday my mom's chihuahua found 2 kittens behind our pool pump. They were around 4 weeks old so we have been bottle feeding them (read: Mom and I have been bottle feeding them). They are doing very well and have started using the litterbox on their own consistently the past day or two! They will not be staying with us but we are fostering them until they are old enough to be adopted out.
The CRPS does seem to have spread to my entire left arm now. It sucks but there is nothing I can do about it. I'm going to an acupressure doctor in Atlanta next week so we will see how that goes.

Wednesday, October 21, 2009

Le sigh

This week is not going so well thus far. My tests on Monday were bad and I just hoped I passed.
Yesterday wasn't too bad, just a pretty lazy day.
Today my hand is partially swollen and really painful. This is a normal progression of CRPS but it just sucks. I lost what little use I have of my left upper body. It blows.
The girls are doing great. I got Dixie a princess costume and am waiting for Lola's matching witch costume to arrive. Both of their costumes have corset tops and I am wearing my Ren Faire outfit so we all kind of match. I'm pretty excited about getting a partial family picture in costume :-p