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Assorted Friday Thoughts

Posted May 08 2009 10:43pm
I've been graced today by a feeling of calm acceptance about this whole thing.

My sister is helping me with preparing for the court hearing for SSDI. I've been denied twice so far which is unbelievable given how disabled I am. It has been a huge task that has been too overwhelming for me to manage on my own. I did the original application which was a monumental task, then did the appeal with my attorney and now am waiting on a court date which won't occur for at least 12 months since my last denial (Nov. 08). She is also helping me with my student loans. I've been able to defer payment on them. Now they are deferred again until August, 09.

There are so many loose ends to tie up in dealing with the death of my old life. I still get calls from people wanting therapy. Had I still been practicing I would feel good that word of mouth about me is positive. But what happens is I listen to the message and I start crying. Then I have to get myself together in order to make the return phone call to tell them I'm no longer practicing. While on the phone with the person I have to make sure my voice doesn't shake because what I really want to do is cry. I have so far been able to get through the phone calls without so much as a quiver in my voice but its hard.

I've been troubled by the latest announcements by Dr. Cheney in his talk in VA on April 25th. The link can be found here: http://www.cfsnova. com/sp-Cheney. html
Cheney believes that CFS is not a disease but an adaptive state the body has adopted to protect us from dying of heart failure. This isn't anything new.

I think what troubles me is that he has these theories and then people in the CFS community starting doubting their own treatment strategy. Cheney believes Vitamin D3 is toxic to people with this disease. He also believes CoQ10, D-Ribose, and supplements from the methylation protocol are toxic. Yet Dr. Myhill and others view these supplements as helpful to ATP production in the mitochondria.

It concerns me that Cheney believes that the methylation protocol is not a good thing and that Rich's conclusions are wrong. I've been on the methylation protocol for about 9 months now.

Ultimately what I find frustrating is Dr. Cheney makes these pronouncements but nobody quite understands what he is talking about, nor does anybody have access to his treatments except for his patients. At $12,000 for the initial visit seeing him is out of the question for most people.

On a deeper level what is disturbing is that really nobody knows what causes this illness much less how to cure it. I guess I've been living in a bit of denial about how little is really known about this.

I've decided I really need to see a cardiologist. I'm having chest pain on a consistent basis, along with an increase in heart palpitations, and when I sit my left foot turns a dusky color. I had hoped the Valcyte would target whatever viruses have lodged in my heart by now but it looks like that isn't going to happen. Most likely the way cardiologists do heart testing won't pick up on the functional problems with my heart. To do a thorough cardiac check up on a patient with me/cfs the doctor would need to do the testing with the patient lying down, sitting, and standing.

Yesterday I spent the better part of the day researching cardiologists but discovered that I need a referral from my primary care doctor. I've given up trying to find a doctor who accepts insurance and knows about this illness. I sent out a plea for help to my local yahoo cfs group. This time I got a bite. A woman gave me the name of her doctor who doesn't know about cfs but is open to doing lab tests, listens, and will refer when necessary. Monday I'll set up an appointment.

I'm finishing up my 15th week on Valcyte. It doesn't look like I'll be a responder so I plan on stopping it at the 5 month mark. I have to say I'm angry that Dr. Montoya has not published the results from his study. I feel it is irresponsible not to because many people are trying this drug who shouldn't be on it. The truth is if the study was a success Roche Pharmaceuticals would be pushing him to publish it because of the money it would generate for them.

Awhile back JoWynn recommended a book called "The Alchemy of Illness." I forget who the author is but I plan on checking the book out from the library.

I'm finding myself interested in Jung, Individuation, and Chronic Illness. Although I remain in touch with the core of who I am, a big part of my identity was based on interacting with the outside world. That part is gone now so I'm faced with the question of who am I now? I realize how much becoming disabled has affected my self esteem and my sense of self. I have to yank myself away from allowing this disability and this disease to define who I am.

My brain fog has increased these past couple weeks. I get frustrated when I blog because I forget what I originally wanted to write about and when rereading it find I'm just not able to capture what I really want to capture. I had been experiencing some cognitive improvements.

Wishing you all much peace and light-
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