Tuesday, November 4, 2008

November Blues

I've spent the better part of the day in bed. I managed to make it down the block to vote. I felt pretty woozy in the voting booth and got a little worried that I'd have to sit down. Luckily I made it through and was able to vote.

I haven't been feeling well. That's a bit of an understatement. Physically I'm not well but I've also been in a bad depression and really wanting to chuck it all in. Logically I know this is part of the illness plus the situational circumstances of having a severe case of chronic illness.

I may have a lead on a new doctor. Yesterday I called someone who I've never spoken to before but I needed help and was desperate enough to toss away my pride and insecurities and make the phone call. This woman suffers from lyme and cfids but primarily lyme. She's been sick a long time and knows a lot. She said she thought I needed a new doctor and recommended the Holotorf Group. She said they are great for testing but she didn't have a good experience with treatment. She lives in Illoinois. Anyway, then someone else whose opinion I highly regard also recommended the Holtorf Group (Sue Jackson). I emailed them. They charge $395 for the first two visits. Ouch. They provide a superbill to provide to insurance. Their website was impressive. They have a well thought out treatment plan posted on their website. What is also compelling about them is they do a lot of testing which I need.

My CFS doctor has been so wishy washy. I really want to have a sense of direction and a feeling that I'm doing the right thing for my health. It feels like he's just guessing half the time. If he would run more tests on me I think I'd have some more answers.

The rain the past few days has been just depressing. The apartment feels damp and drafty when it rains so I can't get comfortable. I'm tired of living here. I don't think that mold caused my illness by any means but I don't think it's healthy for me to live in a place that has as much mold as it does. I also don't think the dampness is a good sign.

One thing I struggle with is how powerless I feel in the face of this illness. I don't get to choose when I can do something-the illness does. If I feel bad I can't follow through. These days I feel bad 100% of the time so end up feeling like I'm just existing. Surviving from one day to the next. And I feel like a burden so that doesn't help. I don't know how to move past these things. I hope and trust that the acceptance or answers will come in time. I don't like feeling like I'm just surviving my life. That's no way to live. Even worse is the sense of futility and uselessness I feel. It's why I'm so moved at having connection with people. For that moment or those moments I feel uplifted. It's just that the connections are few and far between. I need to get well enough to have more connections even if just through the computer. I keep readjusting my expectations of life. I used to hope I would be completely cured. While I'm open to it and would love it if that happened, it's no longer something I strive for.

I just want to have a sense of meaning again. And a sense of peace. I'd like to feel like I mattered to people-that I'm not a burden or an obligation to endure. I'd like to feel like I make a difference-even a small one. It's hard to do when my illness it's at its peak.

2 comments:

Renee said...

I am so sorry you are struggling so much right now. It is very difficult to cope with everything that comes with chronic illness and what you said about the illness being in control of what you do and when you do ~it is so true! Having contact with other people ~ boy I understand that completely....that is why blogging is so important to me...I feel like I am connecting with other bloggers at their place on the net and at mine. It is like knocking on their door and visiting for awhile.
Finding the right doctor is a hard task. I have heard that the average person with Lyme or CFS (or both) sees somewhere between 13-20 doctors before finding someone to help?!
I went to several doctors ~ some treated me like I was unstable, others wanted to help but did not know how. I saw a naturopath doctor for 7 years who helped me alot b/f she moved out of state. I quit doctoring except for annuals for several years until my health was so bad and I develped neuropathy. Alot of research, and contacting a Late Lyme Doctor in NY who led me to a doctor in the midwest is finally what helped me. My doctor treats CFS and Lyme and follows Dr. Burrascano's protocol..I guess what I am saying is ~ don't give up! Sounds like you may have a lead through other people you have contacted.
I did want to mention mold and how it may affect your illness. I was tested for molds at a well known allergy clinic several years ago, and my reactions to the test were to get all the flu symptoms! Even the low grade fever. The doctor told me this is common with reactions to molds. It certainly might be making your CFS symptoms worse?
You are in my thoughts today...
Renee

Anonymous said...

Hi CFS Warrior-

I posted to you a few weeks ago...I live in Santa Rosa but lived in LA up until this past April. I'm a 2 year patient of Dr. Holtorf and would be happy to answer any questions. He is thorough and has a plan to address each/every symptom, but it is a HUGE financial commitment and the office can be difficult to communicate with. I have had times of feeling good but have been on so many things I need to sort through it all and figure out what might have helped. I am having a major relapse these past few months. I really miss being in close proximity to his office. It's very difficult dealing with the severity of this illness and the financial cost of treatments from afar. Before, if I had a problem, I would just show up at his office...not an option any more. Email me at gingkellar@aol.com if you have further questions.