Tuesday, July 29, 2008

Can I start again Please?

It can always get worse. I got my letter of denial from SSDI today. Even though I know they deny 80% of people who apply for the first time, I was still shocked and panicked. It was 2 page letter that ended with "we have concluded that your condition should not limit your ability to work."

Huh? That's one of the craziest things I've heard.

The next step is to get an attorney and file an appeal. I have 60 days in which to do so. It's overwhelming though. I spent some time researching attorneys. The crazy thing about this whole maddening process is that it take energy and a good mind to do this. I have neither right now.

What I'd really like to know is can I start again with this life?

Yesterday I saw a medium who's name is Bill Coller. It was a trek to get there-over an hour's drive. I spent the drive laying down listening to relaxation stuff on my ipod. We were late. Bill was flipping through the channels of the large screened tv when I got there. Somehow that was comforting. He's from Scotland and his accent too is comforting. He isn't a psychic but a medium so what he does is act as a medium between the "spirit world" which consists of those whom have died and this world.

We settled in the room. He said that my mom was there along with my grandparents (her parents) and my dad's mom. He also said that in the background was an uncle in my mom's side like a brother to her. He said "so we have a big group in here."

He started off by saying my mom is with me and wants me to know I'm not alone in this struggle and that I've really been struggling. It feels like pushing water uphill. That made me break down in tears just hearing that she's with me and that "they" recognize how alone I feel in this. It's not that people are abandoning me or turning their backs or not believing I'm ill. It's just a very lonely struggle.

The focus from out of the blue was my health. Bill said my mom wanted me to keep exploring/investigating all avenues. She also said that I know what is going on but I'm not accepting or believing it. He went on to mention something about a malaria like illness, asked if I'd been bitten, asked about parasites-all consistent with lyme/babesia. He said my mom said I've been going on a hope and a prayer type attitude with this illness but it's time for that to stop. I need treatment. And herbal treatment/homeopathy is "too soft" a treatment for this. Also, that I need to pursue it aggressively because waiting could cause this to affect my organs. He said it reminds him of a type of situation in an old John Wayne movie he saw where a soldier was cut in battle. The doctor applied tree moss to his leg but the soldier didn't feel it was necessary so he stopped the treatment. Because his leg wound went untreated he needed an amputation. Thus, the need for me to not give up and sit idly letting the doctor's figure it all out. There's more but my brain is tired.

We stopped by my sister's house to see my dad and LuAnn. Both my sister's and my dad also saw Bill yesterday. It was great to see everyone (except Liz who was elsewhere). I saw my sister Cathy's house for the first time. It's absolutely beautiful. I'm so happy for her.

I saw my dad and was shocked at how pale he looked-almost white. It's clear he's been through a lot physically (7 catheter's in 6 days, 5 trips to the ER). I'm worried about him. I'm grateful they made the trip down here prior to moving on August 22. I miss him already though and have spent the better part of the day crying about that. We also talked about the reoccurence of his prostate cancer. His old urologist had misdiagnosed him for the past 18 months so his cancer has gone untreated for that long. Another doctor to add to my list. He is in treatment now with his new urologist who started it immediately.

I was still kind of processing everything today when I got the letter from ssdi.

When is enough enough? I am tough and strong and have survived a lot already but today I found myself asking when is enough enough? Things may very well get a lot worse with no guarantee;'s of getting better. Do I have what it takes to bear it all? Most days I know I do. But there are some when I think can I go now? Can I submit my resignation now? I don't like what I see ahead of me.

Of course I'll go on. I'm a fighter. I get from both sides of my family. How can I not fight? Haven't we all had enough tragedy? Don't I get to say no to more?

And to think that I'm just one person among so many people who suffer as much and more than I am. The amount of pain in this world is astounding.


Elaine said...

I found your post by using Google Alerts for CFS/ME. My heart goes out to you. I, too, have been turned down by SSDI twice, appealed, turned down, even went to the Federal Review and turned down. These letters just sink my hope. I cry for days out of frustration each time. They say I can work... HA!! I can't even get out of bed, even with the help of prescribed Central Nervous System stimulants. The pain is a daily battle now. I have help, finally, from my doctor to control the pain, but even on some days, the narcotic will not work. Four years ago I had a virus and a fever of 102.6 and I've never been the same. I am getting worse as the years go by, but still no help. I was diagnosed a year ago with CFS after seeing 16 doctors. I read your post and am overwhelmed with compassion for you. Keep fighting--that's all we can do. Maybe the CDC will come up with a cure that will give us all back our lives.

Sue Jackson said...

Hi -

I found my way to your blog after your partner left a comment on my own CFS blog (www.livewithcfs.blogspot.com). I'm sorry you're going through such a difficult time, and I completely understand your feelings of frustration and isolation. I've been there, too.

It sounds as if you have some really great doctor(s) helping you - I've had CFIDS for 6 years and have done a lot of research, but you described some aspects of the immune system function that I had never even heard of!

I also know quite a bit about Lyme and babesiosis. I was misdiagnosed with both in my first year of illness, before I knew about CFS. Both of my sons have CFS, and my older son has had Lyme twice. In fact, I'm going for a Lyme test myself tomorrow because of some new, unexplained knee pain.

I read about your problems with dizziness and fainting. Do you know about Orthostatic Intolerance? It's basically low blood volume and low blood pressure when upright. At least 90% of people with CFS have OI, and there are lots of things you can do to help treat it. Treating OI has been miraculous for my sons. I have a rather lengthy new update on OI written by the world's top expert, Dr. Rowe. If you e-mail me (there's a link at my profile), I'd be glad to send it to you. Please also feel free to stop by my blog or e-mail me about anything else. You're not alone! I'll check back into your blog.