Thursday, April 8, 2010

SSDI Hearing in Four Days...

Just writing the title of this post made me anxious. My hearing is Tuesday morning at 8:30. I have to be there at 8 to meet with my attorney. The thing that is making me most anxious at the moment isn't so much the outcome (although that stresses me out too) but having to be up and functioning at that hour in the morning.

My body does not function before the afternoon hours. I'm worried about fainting. If I did faint the Judge would postpone the hearing so I need to be able to get through this thing. When I went for my endoscopy which was scheduled at 8:30 I could barely function. I keep telling myself that if I need to lie down to answer the Judge's questions then that's what I'll do. Okay, so maybe I'm just as nervous about the outcome as I am about how I'll feel at that hour.

Yesterday and today I had two episodes of the bad right upper quadrant pain. It only lasted a few minutes but it is right around my gallbladder area. It felt like some sort of spasm. I was a bit alarmed by the pain and thankful it didn't last. I called the hospital where I'm supposed to get my HIDA scan to test my gallbladder functioning. They said they could have me come in on Tuesday but obviously that won't work so I scheduled it for Thursday. It's at 8:30 a.m. I tried for later on but one has to fast for 4 hours prior.

I am still trying to schedule the brain Spect Scan. I need to get that done prior to starting stem cell treatments. It looks like I'll also need to get a bone scan of my jaw. My doctor is wondering whether or not I have a hidden jawbone infection which would explain my sometimes high White blood cell count and the worsening of my symptoms over the past 6 months.

What is such a drag is that the medical tests all cause me to crash. I don't like using up what tiny energy I have on medical tests.

Things are proceeding with the stem cell stuff. I'm going to follow Dr. Cheney's protocol. My doctor has ordered Dr. Cheney's Cell Signaling Factors and Mutaflor. I'll do the CSF's twice a day. His protocol can be found here. I'm trying to find his latest DVD's which discuss oxygen toxicity and also explains in general terms what his protocol is. He also has a brief summary of stem cell updates on his blog.

In the meantime I'm continuing to work on my spirituality which I believe is as important as working on my health.

Oh, I've decided to go gluten free once I get the HIDA scan results.

I'm spending very little time on the computer these days so I'm behind in emails, blogging, as well as reading blogs but I'm trying to do a tiny bit every other day until after my hearing and after the HIDA scan.


Lee Lee said...

Best of luck with the hearing! I tell you it was a huge weight off my shoulders once I had all that stuff out of the way and I felt like I could actually just focus on my health rather than all that other crap.
I am also still getting the right upper quadrant pain but my Dr's have worked out what mine is and what to do about it. For me it is pancreas not gall and it is related to diet allergy stuff and bacteria which all influences my CFS.
If you do decide to go gluten free I can send you some fab but easy little recipes. I can't spend more than 10 minutes in the kitchen at a time so I have found things that you can prepare and cook with ease that are gluten free!

Good luck matey. xx

Renee said...

You are in my thoughts and prayers Terri. There is so much going on in your life right now with the hearing, all the tests and your other health issues...Goodness! You have alot of courage and I am sure the strength you need will be there too!
Sending gentle cyber hugs your way....

Toni said...

I hope the hearing goes well, Terri. It will be a good thing if the judge sees you at your worst. I'm sure adrenaline will see you through and ensure you don't faint (although, if you're like me, there will be payback for using adrenaline). But in this case, it will be worth it and as Lee said, once it's done, you can concentrate on your health.

I'll be thinking of you on Tuesday.

Alison said...

Hi Terri,

I think you've mentioned you're on armour thryoid, don't know if you still are. I was on it for six months, and when I saw Dr. Cheney the first thing he did was take me off it. I think he said he takes all his patients off it now. His reasoning is, everyone with CFS is in heart failure (diastolic dysfunction) and you do not give thyroid medicine to people with heart failure because it makes them worse. It made me feel better at first, but overall it was damaging.

My thyroid levels were actually in the normal range when I went on it, but my doctor put me on anyway because she said I had all the symptoms of hypothyroid. If that is how it was with you, you might want to consider getting off it. If you actually have a thyroid problem though, I assume that's different.

Just wanted to check. Good luck with the hearing,


Jessica said...

I'll be thinking of you (the night before, because I don't function that early in the morning either!) In fact, when my pacemaker replacement surgery was scheduled at 7:30 in the morning and I had to be there at 7, I actually burst into tears because I knew I'd get no sleep that night. Sometimes I can't fall asleep until 5 am! So I feel for you.
That's pretty exciting about the stem cell treatment! I'll be praying that it works for you and that your hearing goes well. Take care.

At Home on the Rock... said...

Good luck at the hearing, Terri. I'm thinking of you. I know what you mean about the medical tests being so draining. (((Hugs)))

Jo said...

Hang in there girl! Fatigue anxiety is the pits but you will get through it moment by moment. It'll be interesting to see if the gluten free diet helps. I know I'm better off wheat and dairy. Your determination is an inspiration. Take care ((()))

Pris said...

Wishing you luck, too! If you need to lie down, do so! i wake early but my brain doesn't function well until later either, so I totally understand!

Sending hugs.

PJ said...

Oh, bless you. My thoughts are with you; hearings are so emotionally draining. I settled just to avoid any more of that even though I know I could've gotten more in court. We each do what's best for ourselves and I wish you a speedy resolve and a speedy recovery.

Kerry said...

Sending you wishes that you can feel as peaceful as possible at your hearing tomorrow morning Terry.

Do you have medicine for your OI, such as Midodrine? If not drinking salt water before the hearing might help you keep standing. Sue at "Learning to Live With CFS" suggested adding lime, which I do now and it tastes pretty darn good. It doesn't work miracles, but it can help the fluid stay in the vessels better than without it. Fainting is a part of CFS for many, so if you do, even though it would be hard to reschedule your would be spreading awareness of this debilitating illness.

One minute at a time, one breath at a time. Please let us know how it goes Terry.

Sue Jackson said...

Wow, the stem cell treatment sounds intriguing and promising. I hope it helps!!


Anonymous said...

Hi. I just came around to your blog tonight, from a post on the Phoenix Rising Forum. I can really relate to alot you are blog about. I have had ME/CFS (although unidentified) for at least 22 years, when I had a severe viral illness leaving me hospitalized, affecting my heart, liver, and spleen, w/ headache and stiff neck and photophobia.
Anyway, it is good to make the connection. I only discovered other people with this illness, after struggling all these years to get by, a few months ago, on the PR forum. Was always too brain fogged for internet and never found help in earlier years.
OK, so I'm WarriorSeeksPeace there (was CFIDS warrior, initially, and then changed it to emphasize the struggle with acceptance, vs. resignation, without giving up the fight for a miraculous recovery).
I also went to Lee Lee's blog, and enjoy the energy there very much.
Thanks for your blog(s).
It would be great to get to know you in chat sometime. I have become a really private person, so prefer to remain anonymous as possible, until I get to know people.