In every spare minute since then, I've been reading , and reading and reading about lyme disease. It like I'm thinking maybe I can read my way out of this.
What are those stages?
Anger
Denile
Barginning
Acceptance
I know there is one missing...
I think it would be nice for me to be able to enjoy a novel...
Thanks for listening!
but likewise it is good to escape and not preoccupy yourself with the disease as that can lead to obssesive compulisve depression.
i just joined netflix, (www.netflix.com) a good escape mechanism.
Keep reading.. keep learning.
For every one of you who learns and takes charge of their medical issues.. there are 100 or more who don't.
Learning helps YOU to survive.. and helps YOU to help others.
I just read an article that said 98,000 people in the United States die each year due to medical mistakes. Millions more are injured.
And those are the ones that they ADMIT to.
Now.. if you didn't want to learn all there was to know about frogs sweat glands in your life time.. I would understand. (Unless you are going around kissing frogs and such.)
But don't stop learning about your body and how to improve your health.
I am actually THRILLED to see folks come here and be as PRO-ACTIVE as you have been.
It gives me hope that mankind will survive.
It also makes me happy to know folks are listening.
Thank you for doing all you can to help yourself. I wish we have millions more just like YOU!
Really, I do.
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If you get the choice to sit it out or dance...
I went to ID doc today who told me I did not have Lyme disease because I didn't meet CDC guidelines (based solely on my IgG and IgM tests (not taking into consideration my myriad of neurologic/cognitive symptoms) and recommended I return to my neurologist for a lumbar puncture while not even offering any suggestion, guess or anything as to what in the world what might be causing my symptoms other than that there were certain things she would test for and certain things she would not bother to test for since there would be nothing they could do for me if they were positive (keeping in mind I am a 43-y/o woman, still have hopefully half my life ahead of me.
Needless to say I was a little upset by this and fortunately already had an appointnment scheduled with my PCP for later today....
Shorter story, sorry...in agreement with my PCP's recommendations, going to continue on another 28 day course of IV Rocephin based on recent Columbia/PSL (BRAND NEW 11/2/04 release) that shows that up to 10 months of IV Rocephin helpful for advanced Lyme. He agrees with me that she's obviously a physician who's not good at "thinking outside the box" and that I definitely fit the CDC criteria for Lyme disease.
Sorry....did I mention I have Lyme disease?
In answer to your question...I think you're going about things the only way we can. Read all you can from "good" "reputable" sources, be informed. Had I not learned all I have over the last few months about Lyme, I probably would have left that doctor's office this morning and shot myself because I'd have believed that I've been going through this hell for the last five months and now that I think there may be a light at the end of the tunnel, it is a train that is heading straight for me!
The best advice I can give you...in hindsight, I tried to maintain a full-time job, run my husband's business and do our personal finances. I did all that up until two weeks ago when I had a "meltdown." I have now given up being superwoman and have resigned myself to muddling by with just paying our bills on time and getting the rest, etc. I need and taking care of myself so that I can get better.
Let me know how the novel works. I used to love to read but don't think I could stay awake long enough or focus long enough or remember anything long enough to enjoy it.
Best of luck to you!
In the mean time, while I was out I met a women who has 2 friends who saw the same LLMD as I and one has gone from a wheelchair to full life and the other is healtheier than ever in her life. That's what I aspire to....
Additionally, I gave my LLMD's name and number to a chronically ill friend.
None of this would have come about without finally getting a dx, and reading and this forum!
I haven't started the novel, but may start ordering books to pick away at my graduate pathology course that has been put on hold. May as well get college credit for wanting to know abt diseases!