Wednesday, June 16, 2010

More Tests...

I had to go to the ob-gyn yesterday after spending the past few days with ovarian pain and GI issues. I've been putting off going for awhile mostly because its gotten difficult, if not impossible, to be able to get to the doctor on my own and the whole process is quite taxing on my body.

The ovarian pain has come and gone ever since getting sick. I had a hemorraghic cyst on the same ovary in 2007, another cyst back in 1998 so I'm no stranger to ovarian cysts.

I didn't tell the doctor until well into the exam that I had ME/CFS. She didn't say anything at first but then a  few minutes later did ask me if I'd thought about going on anti-depressants. Maybe the two weren't connected.

Regardless, she was very nice and appropriately concerned. She wasn't able to see my ovary on the in office ultrasound so she referred me for a full pelvic ultrasound to be done on Tuesday. And then I go back to see her on Thursday.

We talked a lot about my mom's history which was surprising. I hadn't had a doctor ask me so much about my mom's medical history before (for anyone who hasn't read my blog for very long my mom died of cancer 44 days after being diagnosed).

I didn't know this, and I think all woman should know this, but ovarian cancer has vague symptoms including gastro-intestinal symptoms (that's the part I didn't know), bloating, bladder problems, ovarian pain, weight loss, etc...I also didn't know that adenocarcinoma (which is the type of cancer my mom died of) can be ovarian cancer. And, that the risk for ovarian cancer increases if one has an immediate family member who has had breast, ovarian, or colon cancer.

I continue to have the ovarian pain as well as GI issues so I'm worried but I'm trying not to live there. I have also lost my appetite which is strange. The ob-gyn coudn't feel any mass on my ovary during the pelvic exam so hopefully there is nothing there and this is all ME/CFS stuff.

The ultrasound might be a tiny bit challenging because I have to drink 32 ounces of water 1 hour prior to the exam and I can't go to the bathroom until after the test. I told the woman over the phone that I wasn't sure if I'd be able to hold it but I'd try. Since getting sick I pee like a racehorse.

I also have to see a dermatologist about a spot that I'm sure is a skin cancer. Both my parents had significant skin cancers so I'm pretty familiar with it. I'm not worried about it though because it will be easily treatable. I had a pre-cancerous spot removed from my arm two years ago with no problems.

I think I've decided against stem cell treatment at this time. It turns out that only 30-40% of Cheney's patients showed improvement although 20% of those are functional cures. It's just not worth the risk for me at this point.

Instead I'm going to focus on getting my hormones into balance, going gluten free, and getting my mood to a good place even if that means going on an anti-depressant.

Since my ME/CFS doctor is moving I need to find a new doctor. I'm considering abandoning the idea of paying out of pocket for medical care for treatments that really don't help anyway. I'm thinking of seeing if I can find a good internist that accepts my insurance. Actually, that's not true I do think the Cheney protocol is helping me and Valcyte helped while I was on it. I think I'm just burned out having spent my entire life savings on out of pocket medical care.

I wonder what it would be like to stop chasing treatments. It might be kind of nice.

I did get into the Stanford study and will go there in September to have my blood drawn. They are testing people (both controls and ME/CFS people) to see what pathogens exist in people with this illness.  I think its a great idea. I'll also be tested for xmrv. Again. I think I'll probably get these test results more quickly than the previous xmrv test for a study I was in last fall (still haven't received those results).

I'm grateful to be in the Stanford study because I'll get tested for tons of pathogens and will get the results. If anyone wants contact information leave your email address in the comments section and I'll give them to you. People have to go to Stanford to get tested and you have to have been off anti-virals (or at least Valcyte) for 1 year.

That's it for now. Time for more Advil...

Friday, June 4, 2010

Post #8

I've written seven posts that I've either taken down or not published for one reason or another. I feel like things are germinating in me but I'm not feeling very articulate. There is a lot going on internally as well as a lot going on in the ME/CFS world.

There is a documentary called "What About ME" due to come out in 2011. I watched the trailers and found them quite moving. At one point there is a woman talking about the people she knows that have committed suicide as a result of this illness. She said their bookshelves were lined with self-help books.

Here's a link:  http://www.whataboutme.biz/

The suicide rate for people living with this is very high. The psychologizers would have people believe that  we suffer from depression that will be fixed with some anti-depressants and cognitive behavioral therapy. They fail to see that 25% of us are so ill that we can not attend to basic activities of daily living, that we live our lives in isolation, and that we have a neurological disorder (in addition to immune system dysregulation) which produces all of the symptoms consistent with traumatic brain injury. We are fighting very hard for our lives.

This is a very different life from the one I imagined. I've gone from researching ideas for my dissertation to researching the best wheelchair to get. From going out for coffee with friends to living my life in isolation. I used to believe in the medical system for the most part. I now see how we don't have a medical system at all but an insurance system which is great when you are healthy...but horrible when you have a chronic illness.

I think what shocks me most is how easy it has been for people that I knew to discard me once I became so disabled by this. Trying to reconnect with old school friends has been eye opening. Things are fine until the question: "so what are you doing now?" I tell them and then never hear from them again. I once believed in the constitutional illusion that all people are created equal. They should have included a disclaimer "that all healthy people are created equal." Once you become disabled you realize there is a US version of the caste system with disabled people at the bottom. So I no longer answer the question "what am I doing now." In fact, I've stopped trying to reconnect with anyone.

One would think that after 3 years of being sick that I'd get used to it by now. With this illness 3 years is nothing. Three years is still within that window of shock and awe. It is still within the time frame of being hit with more losses as the few people who did try to maintain a relationship with me have also gone their way.

I'm still angry about it all. Maybe it will never go away. I do have moments of peace and joy. Most recently was last weekend when I was able to leave the house for a little while. We went to a high end stereo store so I could get some headphones. I treated myself to a pair of Grado 125i headphones which are ugly but sound heavenly. The whole experience at the store was wonderful. I got to sit in a comfy chair and listen to different headphones. I'm grateful I can still listen to music. It's the one thing this illness hasn't touched except for those rare days when my head hurts too much to listen to anything.

I guess I'm adjusting to the fact that I've tried so many treatments with nothing to show for it. Short of stem cells I don't know that anything will help.

So I will continue my search for a wheelchair/scooter, lick my wounds, and continue to try to grow spiritually.