Thursday, October 23, 2014

UPDATE

It's been six months since my last blog post. A busy, happy six months that might be excuse my neglect of this blog. But no, how fair is that? I struggled so long with ups and downs of Lyme treatment, and it seems more natural to keep the blog up when Lyme is more at the forefront of my life. When I'm feeling well I want to work on my short stories and find an agent for my memoir, not to mention dance, read, run, and bike up to the pool while I yak away with my buddy Emily and then swim for 45 minutes and take the long way home, yakking away again.

Then I got a gentle reminder that when I'm feeling strong and the universe is showering me with luck, I should remember my blog.

Dancing with my friend Estela in the Seattle Solstice Parade. (I'm on the right.)


The reminder came when I put a profile up on OkCupid. Yes it was time to start dating again! I'd been gearing up to date for a while, even taking some selfies when my hair was looking good--but I was mostly putting it off because the thought made me nervous. By early September, though, I knew the time was ripe. I gathered my best photos and typed OkCupid into the search engine.

I've been sick for so long that I've racked up some experience dating while chronically ill. Not that I have any idea what I'm doing, or have a sure-fire strategy for explaining this confusing illness to potential boyfriends. But one thing I do know is to be upfront about it. I mentioned Lyme disease once or twice in my online profile. There are plenty of guys out there who probably don't want to take on this added complication, and I'd rather not waste my time meeting them.

To my surprise, within 24 hours of putting up my profile, I was fielding messages about Lyme disease. And I don't mean, "You're so beautiful and intelligent and I don't mind at all that you have an illness,"--I did in fact I did get that type of message, but these were not what flummoxed me. What threw me were messages asking me who my doctor was, what type of testing I'd had done, and specifically how I was treating Lyme.

Help! The separate worlds were colliding! I was just trying to maybe have coffee with someone single and attractive, and instead I was getting sucked back into the quicksand of the Western Blot and the Burnher Protocol? Would I ever escape Borrelia Burgdorferi, for even just a second?

And then I calmed down. It was two guys. One was in the process of getting diagnosed and had randomly come across my profile, he said. The other seemed to have done a deliberate search for Lyme on OkCupid because, he said, people on dating websites were clearly doing better than so many people out there with Lyme. Pretty damn smart of bachelor # 2.

And then I remembered how starved people are for information about what works.

I remembered that on this blog, my posts on medicine get the most hits (no, the world at large is not so interested in my personal life or my humorous stories about friends, family, and pets). People are looking for information. I remember. I was there myself. Support groups can sometimes be great, and sometimes make you feel like someone just destroyed every map that was ever made. Certainly this is an illness with no good map.

So here's what I can share.

I am no longer trying to beat this illness into complete submission. At this point it doesn't seem realistic. I'm accepting with as much grace as possible that Borrelia Burgdorferi has a partial hold on my existence.

It's not so bad, compared to where I started: spending all day in bed, crawling on hands a knees to get to the bathroom, or on 'good days' walking one full block for exercise. Yes, my current relationship with Lyme is far better.

Currently, I count on dedicating ten hours each night to sleeping--although I'm not asleep the whole time, I need that much time getting ready for bed and in bed in order to sleep the eight or nine hours I need. I also take a couple short naps/meditation sessions during the day. I have the luxury of pursuing my career from home and my house is a carefully controlled place, with no toxic chemicals, no mold, vacuumed to the hilt. (And somehow there's still dog hair flying around!)

As for Lyme-killing meds. YES. I am currently on a combination of anti-microbial herbs:

Teasel
Pau D'Arco
Samento
Cumanda
Banderol
Neem

My hero of a scientist, Dr. Eva Sapi, has done research on Samento and Banderol in combination and found them to be more effective than certain antibiotics, in certain Lyme scenarios. (I am paraphrasing one of my doctors here. Please don't take this as bonafide medical information--just trying to explain how I got to this combination of medicine.) My naturopath, Nesreen Medina, has suggested including the Teasel, which made a huge difference for me in my allergy/congestion symptoms. We added the Pau D'Arco because I have a history of parasites from my time in Mexico. Neem, ditto. Also it seems to help with sleep.

Before I started these herbs, I was on very high doses of antibiotics, for years. I don't think the herbs alone would have been significantly effective to kill off Lyme. Not for me. But they are good at keeping it in check and helping me make slow, noticeable progress. (Less brain fatigue, longer runs and swims, etc.)

At any one time I'm on 5 out of the 6 of the herbs. I rotate one out because we know this bacteria is really good at resisting whatever you throw at it. So the rotation keeps beating it back from different angles.

I take these things before I go to bed. They are liquid drops and I have to count them out, which is annoying at the end of the day, but so be it! When I first switched to herbs, Dr. Marty Ross prescribed them to me twice a day. I tried taking the second dose before getting out of bed in the morning, or at lunch, i.e. right before my afternoon nap. Either way, that second dose had me essentially unable to function for a large part of the day. So I cut it down to just one big dose at night. This has me sleeping through the night (mostly) and (mostly) alert during the day.

I also take lots of other pills: vitamins, anti-inflammatories (quercetin and bromelain), and herbs such as burdock to support my liver. I'll explain these in another post. That's it for now. It's time to go running.

Recent photo while organizing my medicine. Yes, it's still complicated! And it's worth it.



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 arrive at Carolyn's office 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. She always solved my problems.


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. I couldn't really imagine I'd be OK without her, but 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. From California, 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 was 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 my mom 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.