Wednesday, September 19, 2012

Oops! Forgot the Title!

I'm laying here listening to a most beautiful piece of music. After being approved for SSDI in 2010 I treated myself to a really expensive set of headphones ($300). Music and visual images of beauty are moving as well as inspiring to me. It was well worth the expense at the time. I'm grateful I did it because now I can't afford shit.

It's been a difficult month-no surprises there. After much reflection and tears I made the heartbreaking decision to give Chelsea to the owners of the rescue organization on the condition that she not be adopted out again. I haven't been able to write about it, or talk about it until the past few days. Chelsea needed more care than I could provide. Her quality of life wasn't good.

Now she's with the people she bonded with and who saved her life 3 years ago. They love Chelsea, have a beautiful house, beautiful land. And she'll have access to free weekly vet care. The owner of Homeward Bound said "I will keep Chelsea with me until she takes her last breath". So Chelsea is home and has a much better quality of life. Heck her quality of life is way better than mine is.

I have the usual me/cfs stuff going on. Daily low grade fevers starting in the afternoon. I'm having unusually bad fatigue of a different type. I'm wondering if I'm anemic. I've been having more bleeding episodes (today included) so I've started searching for a surgeon. I've been at the maximum level of hydrocortisone and still bleeding which sucks.

My weight is the lowest its been since before high school. When I saw the GI doctor last month they weighed me. I was expecting to have gained weight so I was surprised to see that I'd lost 6 pounds. I don't have a clue as to how to put weight on anymore.

I'm looking for a hematologist or immunologist to treat my immune deficiency. I can't afford to buy the supplements my doctor wants me to take. I'm supposed to be taking Researched Nutitionals Tranfer Factors LymPlus and Transfer Factor PlasMyc. They cost about $85 each. I'm almost out of them. I'm also taking Colustrum but can no longer afford that either.

I'm concerned about not being able to take immune support supplements anymore. They don't improve my functioning but they prevent me from getting worse. The treatment I need is IVIG or... hmmm....I can't remember the name of the other one. I found a better link for CVID (Common Variable Immune Deficiency)-I wonder if a lot of us aren't misdiagnosed. This paper talks about how it can lead to chronic infections (obviously), inflammation, autoimmune conditions, lymphoma....sound familiar?

The fact that I'm having night sweats, daily low grade fevers, weight loss, lack of appetite, fatigue, chills, etc...says that I need more intensive treatment. I feel like I'm slowly losing my battle to maintain this level of functioning. But I'm fighting for every ounce of functioning I can squeeze out of this body.

People have probably heard about the results of the Lipkin study concluding no link between me/cfs and xmrv/pmlv. Again, no surprise there. For anyone interested in reading about it here are a couple links: Lipkin and Columbia (youtube video of press conference).

Even though deep down I know there isn't a single cause for ME/CFS I was still hoping for one because then it would be easier to treat. Lipkin believes in the perfect storm theory. I think he may have even used that term in the press conference. It's a term I've used to describe the events leading up to me getting sick. From the article on prohealth:

Instead of a single cause, Lipkin pointed to "the three strikes theory” which suggests that genes, environment and timing all conspire to create ME/CFS - and referred to animal studies showing that early events can set the stage for problems years later.

While leaving the viral question open, Lipkin suggested the body’s response to viruses may play a larger role than the viruses themselves. People with ME/CFS could be reacting abnormally to normal levels of a virus; or a virus could kick off a chronic response and then completely disappear - leaving a dysregulated system behind. 

One focus in the future will be to analyze proteins in the blood to find aberrant pathways that can be targeted by drug therapies. In this scenario, which may be the quickest to produce results, the ultimate cause of the disorder is bypassed, at least early on, in an effort to uncover problems that drug therapies can attack. 
The results of the Norway study along with all this are pointing to problems with B cells (to put it quite simply) at least for a subset of us. I know I'm in the infectious/immune subset of ME/CFS patients.

My blood was in that study. I'm eager to get the results of the gene expression and pathogen study that Stanford is also doing on me/cfs patients. We had to do a follow up questionnaire recently.

I had to stop Cymbalta because it completely set me back as far as bleeding and my colon. It's bad again. I'm desperately looking for a good psychiatrist. The depression is back.

But its the isolation that is killing my spirit. It's brutally lonely.

I've been trying to find some way to meet people within my narrow energy envelope. It hasn't worked out so well so far. I'm hoping and praying that tonight I can show up to a study group on finding meaning, myth, and the sacred. It starts tonight and meets only 1x per month. I've been wanting to find some sort of meaning in the midst of all that has happened these past 5-6 years.

There's a lot more to write but I'll stop here...wishing you all much peace

1 comment:

Reading the Signs said...

In the midst of this lonely and difficult time, I would like to say I am glad to meet you and hope that you may be able to carry on writing and blogging. For you write and express yourself so beautifully - I have lingered and appreciated your posts.

Yes, the struggle to find meaning is huge, and one that I am also engaged with, having had this disease for over a quarter of a century. And yet, I feel intuitively that there is great meaning in all this though it's hard to grasp.

Good wishes and respect to you.