Friday, December 2, 2011

When you can't tell if you are derailed or moving forward... assured. We are all still moving forward whether we think so or not.

I had been feeling derailed due to the last episode of CVS and how long it's taken to feel recovered. But some things happened this week, so I am moving forward nonetheless.

I've been feeling emotional, and worried that means my hormones are wacky. But since there's nothing I can do about my hormones at the moment, I decided to stop and feel some of the emotions.

For example, I was thinking a lot about one of my first aerobics instructors from Gold's Gym in Berkeley after I moved here to go to grad school. Jimmy. He was so funny - and in my memory I still see his late 80s aerobics outfits burned there permanently. We got to be friends like you do when you are the student who always goes to the front of the class, and you ride BART together sometimes and compare mixtapes in your Walkman to see what the other is listening to.  But still "gym friends" - one of those special compartmentalized friendships that we form, and they seem pretty  transient when you look back over longer periods of your life. I think I started thinking about Jimmy because the satellite radio in my car is dialed to "First Wave" - ie alternative from late 80s early 90s - and they've been playing a lot of Yaz. And that was one of Jimmy's favorites. And I've been boning up on some HIV science for work lately. And Jimmy was the first person I knew who got AIDS, and then died too quickly after diagnosis.

I saw the acupunturist/chinese medicine man on Wednesday.  He was quite remarkable - I can see why he has a cult-like following in Yelp and on BPN. I'll call him Dr. Who in honor of his cult status and enigmatic apparent brilliance since I'm still uncomfortable using people's real names in my blog without their knowledge or permission.

It took me like an hour and a half to fill in all the questionnaires for this first appointment ahead of time. Then we spent an hour going over all of it.  As I suspected, my body is out of whack. duh. But he didn't treat any of it like it was incomprehensible. In fact, my long term health history is pretty interesting, and I have long thought that the right type of doctor would want to dig in and figure out what the common thread is to my largely over-reactive autoimmune system. Because the stuff I have doesn't all tie together like the textbooks...but there have to be some threads tying them all together. It wouldn't be right otherwise to have diabetes, chronic sarcoid, weird stuff in your history like Guillian-Barre and Horner's syndrome, and cluster headaches, and thyroid nodules with autoantibodies, and blah blah can go back to an earlier post if you want a current laundry list. But the history is even worse!

Dr. Who is fascinated my my history, has seen similar complex people, and wanted to know what I thought about how some of these things tie together - especially the sarcoid and autoimmune issues and had I ever been tested for Lyme disease (yes, in grad school when I had some weird hip dysplasia thing), and what did I think about other infectious causes (yes, I've thought about that a lot given some of this started when I went to Africa for example).

He even works with Duypetren's (though I still have to get the finger straightened out that's already curling up).

Dr. Who had some scoring thing for hormone balances and depletion and felt my pulse (I guess the Chinese version) - declared my blood was barely moving and given the state of my adrenals and testosterone, etc. etc. that it was only a testament to my force of will (and I guess my sense of humor) that I'm still functioning at as high a level as I am.

He seemed to "get" me - which scared me a little to be honest. When I lay down on the table to get needled, he left the room for a few minutes and I burst into tears. I had to get them out to make room for some hope.

I realized that this force of will thing is big for me. And the thing about using your will to move you around and through obstacles and to move what feel like mountains just to get through one day to the next is that you get cynical. You start to believe only in yourself and that there isn't much to be done "for" you medically so if you want to carry on you'd better just get to it.  To give up some of that control to make room for hope is really hard. Hope should be omnipresent - it is the ultimate healing sentiment. It also means taking that risk of disappointment and failure.

I'm such a dork.  I think or did think of myself as a very hopeful person.  But I used to think I was romantic too, and eventually realized I'm completely cynical about love too.  Although Mr. Wonderful changed my mind and heart in that regard, so I know that change is possible. But it takes a long time.

After over 30 years of dealing with chronic disease(s), the fact of the matter is, I guess, that I have lost hope and replaced it with stubborn self reliance and force of will. Dr. Who made me want to hope for a change.

Keep Calm and Carry On!


  1. Hi Janet---thanks for sharing some of your journey, I think many of us women move through life with the force of will you're talking about. Letting go and letting in hope is a risk. It IS very moving to have someone "get" you, and tears are a real heart response. Hope and healing prayers for you. Beth

  2. Thank you for sharing hope, Janet, and thank God for Dr. Who. All of us who love you need some hope, too. Good for you for having the courage to go see him.


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