Sunday, January 4, 2009

Welcome to my blog (3-5 stars)

You might be visiting this site for the first time, and if that's the case, Welcome! If you've been here before, welcome back :-)

I didn't mention it before, but I was diagnosed with an autoimmune disease in November of this year. The update is I am doing very well today.  Expected to make a full recovery and be back to work and normal life soon.
I started having these weird pains in January of this year. I had just started a new job as a trainer in September of 2007, but it was really a change in structure from the previous job. I gave my first professional training class in January of 2008. It was a 2-day 8 hour class, and the day afterward I started having this really bad pain in my right thumb, which I attributed to bad ergonomics in the training room. The pain continued to get worse. When I discussed it with my mom, she mentioned that we had carpal tunnel syndrome in our family history, and recommended wearing splints at night. So I bought splints and wore them at night. The idea of surgery and physical therapy freaked me out, so I figured I would just wait and see, and hopefully the pain would go away. Eventually it did.
In April we had my sister's wedding, and that was about 2 weeks of non-stop work. It was a lot of fun, but a ton of stress and activity, and of course very little sleep.
Fast forward to the first week of May. I fly back to California and promptly get the flu and pink-eye. I was sick for 3 or 4 days, and started on eyedrops, and soon noticed that the left side of my face felt numb.
There were some issues with finding a specialist in California (I had really bad luck with doctors in California, almost every single one I went to was bad). We were hopeful that it was just a mild case of Bell's Palsy, but I was advised to see a specialist.
Let me just say, the UCLA system sucked - I realize now that I should have just pulled some strings and gotten in to see a specialist right away, but I didn't know how to do that at the time.  I finally got in to see a family friend that is a family practitioner. Originally she also thought carpal tunnel syndrome, but agreed that further testing was needed due to the neuro issues. She ran the ANA values in October and those ended up being high, so she referred me to a neurologist and rheumatoid arthritis specialist, which was a little freaky! I was the only person that was able to walk - all of the patients in the office were over 70 or at least appeared to be..

This Ra guy, Dr. Fisher, seemed to be about 70 and a little senile to me. He ran some tests, and whe I went to the neurologist, he finally reran the EMG. Keep in mind - I was somehow working a full-time job and dealing with severe pain now in both hands and wrists, and driving myself to appointments. So I went back to both of these guys and the primary care person again and again for testing, and had MRIs and ultrasounds at an imaging place near work, and worked and went home and didn't sleep. It was a really horrible time, and I know that god must have been with me.
Fast-forward to October. Major financial collapses were occurring, and somewhere in the beginning of October, Iceland went bankrupt. Well, the company that I work for is an Icelandic- owned company, and with the lack of work, I should have been prepared. I did discuss the Icelandic situation with my supervisor, to see what his thoughts were on the future of the company due to the bankruptcy.
I honestly feel now that the lay off was a god send. I really needed a break.
In November my parents had signed the three of us up for a cruise, and we ended up going. Once the cruise was over, I packed and flew to Houston, where I saw another neuro the next day, had a third EMG, and got the diagnosis.
We went to the top autoimmune guy in Houston, Dr. Frank Arnette, and he gave us all the facts.
Visits from friends really sustained me during this time.

Well I really need to go grab lunch now.  I appreciate your getting this far if you are still reading, and thank you for letting me share my news with you in this way.
Anyway, that's all for now - again, I love you guys!

Muah,
Amy

2 comments:

kaushal5673 said...

amy-
thanks for sharing such a wonderful and personal blog. i can only imagine how hard dealing with lupus is. as you know back in 1996 i had drug-induced lupus and it was difficult to say the least (i couldn't bend my legs to get into a car, tie my shoes, stretch my arms over my head, etc...) at least now you are in the right place and under proper supervision. you are in my thoughts and i wish all the best for you!

Amy said...

Kaushal,

Thank you so much for the kind words! This is a hard disease to deal with, even short term, so I can imagine that it must have been really hard for you too! Oh well, we take lemons and make lemonade, right??

I do worry about putting so much personal information out there, and your comments just reassured me that one person might have gotten a little something from my posts, which makes the entire blog worth it!

Thanks again dear,
Amy

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