Friday, April 11, 2014

FOOD FOR THOUGHT from A FAMOUS PERSON with A CHRONIC ILLNESS



"It was during these years of my lowest vitality that I ceased to be a pessimist. The instinct of self-restoration forbad me a philosophy of poverty and discouragement. This in fact is how the long period of sickness appears to be me now. As it were, I discovered life anew, including myself. I turned my will to health, to life, into a philosophy."  -Friedrich Nietzsche

I have been researching Nietzsche for a character in a short story who is a big reader of the philosopher. Yes, I vaguely knew he went mad at the end of his life from what was supposed to be syphilis (like Lyme a spirochete bacteria), but I didn't realize he lived most of his adult life with chronic illness.

I came across this quote in a BBC documentary. https://www.youtube.com/watch?v=3EGOwduWVKA

Plus there's that crazy moustache.

Sunday, March 9, 2014

THE SADDEST NEWS


Ophelia, Odilon Redon


I have been putting off writing this post. I don’t know how to write it. I’m still figuring out how to believe it. Carolyn Humphreys—Dr. Carolyn Humphreys, ND, the best doctor I ever had—passed away in February.


Carolyn was the essence of health and laughter and grace. She was slender with ash-blond hair, bright eyes, a brighter smile. She was my friend as well as my doctor. While she did body work on me, which was always part of my appointments with her, we talked and laughed—oh how we laughed, until we were wiping tears from our eyes. She saw the humor in everything, and she wasn’t afraid to laugh about the stinky supplements, weird pills, and bizarre forms of treatment she sometimes gave me.

 

I could go to see Carolyn in tears and come out laughing. I could go to Carolyn half out of my mind from insomnia or some other effect of my Lyme treatment and leave feeling calm, knowing I would sleep that night—and I would be right.

 

Carolyn knew me from when I could barely walk. Through naturopathy, homeopathy, cranial sacral therapy, and the blood thinner heparin (this last she managed with more attention to detail and understanding than any other doctor I’ve had), she got me up and able to walk a few blocks again.

 

And then she said I needed to go further, and she insisted I go to Dr. Martin Ross to be fully tested for Lyme disease. Thus she rescued my life.

 

When I was well enough to write again, she told me over and over to write and keep writing. She insisted I would help other people with serious illnesses by writing about my own experience. Dr. Carolyn Humphreys is the reason this blog exists.

 

***

It was through this blog I got the news Carolyn passed away. I hadn’t seen her in five years, since she moved to California. I was afraid when she left. She had been the ground under my feet the first four years I lived in Seattle. It turned out I was strong enough by then to turn to other doctors to get me through my ongoing treatment.

 

Still, she was always there for me. She read my blog, and sent me emails of encouragement. One post in particular, she found really funny. Here it is: Taste Buds

 

But most of all she was always there for me because I was always going to see her again. She was my safety net, only a phone call and a plane ride away. Plane rides are not easy for me, but they are in the realm of the possible. There were many moments when I was frightened by my reaction to antibiotics and other Lyme treatments, and I thought that if all else failed, if no one could help me in Seattle, I could fly to San Diego to see Carolyn.

 

That is who Carolyn Humphreys was. She was the doctor of when-all-else-fails. She was the person who would set things right.

 

On March 6th 2014, someone messaged me through facebook about my blog. This happens from time to time. I clicked on the link and read Carolyn had died. I wasn’t able to understand at first. I was not able to understand.

 

I spent the afternoon in tears, befriending Carolyn’s friends on facebook until I got a forwarded email stream that explained what happened. There were 15 posts her mother had made to a prayer circle. Here is what I understand.

 

Early February 2014 Carolyn was in pain. She went to the hospital. She had high blood pressure that was impairing her vision. Doctors put her on medication and she improved somewhat. She then needed an operation to remove part of her colon that did not have enough blood flow. She made it through the operation, and the initial stages of recovery. She could sip a little bit of protein powder mixed with organic apple juice through a straw. By then, however, the doctors had diagnosed Carolyn’s illness. In her mother’s words:

 

“Carolyn had a vasculitis disease called PAN, polyarteritis nodosa.  Poly means many.  Arteritis means arteries.  Nodosa means knots.  It is a very rare autoimmune disease that attacks the artery system causing knots in them all over the body and shutting down the arteries causing dead spots.”

 

The doctors could do nothing more to help Carolyn. Her family brought her to hospice care, and the next day she passed away. It was February 18th, a Tuesday.

 

I cannot remember what I did that Tuesday. I look back at my email inbox to see if there is anything that will jar my memory but it is all routine emails. It was a routine day.

 

On Thursday March 6th when I learned Carolyn was gone, I cried and cried. I am staying with my parents’ in DC, and I pieced through the emails and waited for my mother to come home, because I had to tell someone to make it real. Sobs shook my body in waves. My mother arrived and hugged me and that hug seemed so precious and so ephemeral. A daughter hugging her mother, a mother hugging her daughter. A moment that disappears in a blink, a finger snap. I told what I could. I put Cleopatra on her leash, put on my coat and my headphones. I needed to walk and walk through the bitter cold evening to let it all sink in. I’d walk for miles and miles, I’d walk for hours. It was not lost on me that I could this because of Carolyn. I listened to Joni Mitchel, Blue, and her sweet sorrowful voice sang for Carolyn. I walked and I cried.
 
 
 
 
 

Friday, February 7, 2014

WORTH REPEATING

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter

I just got a comment on an earlier post, about doctors in the UK refusing to believe in Chronic Lyme.

This New Yorker article is an excellent overview of the issue in the US. Many friends forwarded it to me when it first came out, and I think I linked to it here. One of my friends said that after she read it, she understood my situation a way she never had before.

Another friend with a degree in public health has commented that when any new health condition crops up, it is generally met with denial by the medical establishment. Yes, ladies and gentlemen, we are still in that situation with Lyme disease, especially Chronic Lyme.