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The Old "newbie"


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#1 lori_in_va

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Posted 12 December 2006 - 06:13 AM

So, yes, I was on the "old" website, even though I just cannot stop turning 29, it just happens year after year. Ha Ha, Amazing I have a sense of humor considering I am on my way out the door to the doctor (hey there's a new one) and my car was returned to me on EMPTY compliments of that person that keeps coming home called my husband. My name is Lori, I live in Virginia Beach, VA. Husband is Navy Pilot, on the career path, has 12 years in now, yeah. We have three cats, all princesses of course, they are our children since the largest one is about 10 pounds and I really cannot pick her up anymore, the other two have stayed nice and tiny around 6 lbs and I can still handle them. Other than that, I have Lupus, RA, Scleroderma, Sjogrens, and Hashimotos (just a fancy title that tells the old doctors that my body now like to attack my thyroid), so when the thyroid finally fails, they will treat it then??? what a theory. No one really knows which disease out of the Lupus or Sclero is the worst, RA is kind of my background disease so to speak, and the sjogrens is just really really annoying. I have been on the doctor rollercoaster for going on 9 years now, I had to stop working in 2000 at the very end of the year. I had worked for years to become an attorney and prosecute criminals and I was able to do it (barely) for about 10 months or so. Yippee. I LOVED IT. I would do just about anything to be back in the courtroom everyday prosecuting criminals. Anyway, I also have this mysterious condition that causes my bones to break, crumble, crack, but my bone density test shows that my range is just slightly out of my age. So I have had a broken neck (I had the audacity to turn my head left one day) So, they fused c-3 through c-7, and removed almost all of c-7 (the spinous process, that little bump you feel on the back of your neck) Also broke both arms above the elbow by actually being nuts enough to go Holiday shopping and carry heavy bags, and then the next day I went grocery shopping, how dare I, so I ended up with two broken arms. Since then I have "babied" the old bones so I have only had about 7 fractures since, these are "only" stress fractures, ususally in the hands, wrists, lower arms.
My skin loves to create sores, perfect little round sores that take about 10 months or longer to heal. The doctors loved to blame me for it, I think they wrote I was a "neurotic self mutulator" that was until I took witnesses in with me, and demanded a proper skin biopsy, evidently the first one was for allergies, huh?? So the second one was done where I wanted it done, and it was done deeper (yuck) and what do you know, the neurotic woman was not doing this to herself afterall, the biopsy came back positive for c-3 c-4 deposits in the skin and something else weird. But since the dermatologist was so mad at me for being "right" they just threw some cream at me and said there was no reason to come back. So I finally got in front of a nice doctor (neurology) so I dont know how much he can do but he is so awesome and so nice it's pathetic, I love it. I went to Duke Medical yesterday and got a single fiber EMG, nothing to look forward to, especially when one of the needles goes in your face. Anyway, this morning, it looks like I took a nice hit in the head. But, now on the bright side at least they know what is wrong with me, now they are trying to get me admitted so the doctors can A: figure out which disease is causing me the most grief, B: try to give me meds, but that's not looking good due to meds not liking each other and C: put me on a "lifetime" or at least a long time pain management program, cause the pain management now is HORRIBLE and a pain in my behind. So, on that note, its a tiny update of my crazy life, and I had my final disability hearing on Friday a week ago, so everyone out there think good thoughts of LORI, GET APPROVED FOR DISABILITY, PLEASE. It'smy last shot at getting it, so let's hope. Thanks for reading and I will keep posted as best I can, glad to see a lot of familiar names and a TON of new ones which is great that new people have a place to go, but bad because of the reason, Love to all of you, best of health, Lori

#2 janey

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Posted 12 December 2006 - 01:38 PM

Lori,
Welcome back and thanks for the update on how you are doing! Sounds like you have been through a lot since the old message board. I'm glad you finally got their attention with the EMG. Hopefully they can finally find something for the pain.

Good luck at the disability hearing!!! Yes, lots and lots of positive thoughts being sent your way.

Big Hugs,
Janey Willis
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#3 LisaBulman

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Posted 12 December 2006 - 02:33 PM

Hi Lori,
Welcome back!!! I was wondering when you were going to show up here! Positive thoughts are being sent your way.... I really hope you get the disability! Wow you have been a little busy since we last heard from you. Atleast they are trying to get stuff figured out and hopefully you will be pain free soon. Please keep us posted and keep posting!!

Hugs,
Lisa
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#4 Heidi

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Posted 12 December 2006 - 02:41 PM

Hi Lori,

It is good to see you here on the forums! Thanks for providing us with an update on what has been going on with you. All I can say is, WOW!!! I am sending lots of good thoughts your way for your disability. Please keep us all posted.

Warm wishes,
Heidi

#5 Lori-Scleroderma Spouse

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Posted 12 December 2006 - 04:39 PM

Hi Lori,

I joined right before the new board. Glad to hear that they are working on getting you there. My hubby had an EMG done at Duke a while back. I just holled into the bedroom and asked him if they put a needle in his face. He gave me a strong no. When he came out of the test, he was not a happy camper. Hope things get better for you. We live in NC and my name is also Lori. My husband has been diagnosed with diffuse scleroderma since April. He is also waiting on disability. This is his first attempt. Hope you get the help you need. I am pulling for you. I will repeat "Lori-disability" over and over.
Lori
Scleroderma Spouse