Lyme status in Montana (officially?)

As far as I've seen, it's easier to get treated for lyme disease in Montana thatn to get diagnosed or thoroughly tested.  My doctor, I'm certain, would continue further if I brought in compelling evidence.  Which I think is a decent position for her to take.  There were only so many tests I wanted following my Chronic Fatigue Syndrome diagnosis, once she felt we'd cleared all the remaining questions.

But I have so much in common with lyme disease patients (aside from my current recovery) that it has remained a lingering question mark.  Bell's palsy, for example, can be a symptom of Lyme disease.  And I did have a tick on me within a month prior to Bell's, and a red rash on my scalp within a month after.  Although there was no evidence of a bite, there is often no evidence of a bite.

When Lyme disease had not yet been detected in Colorado, a Forest Service employee (as per the movie Under Our Skin) went in to a doctor with a ring shaped rash, a tick bite, and the tick in a jar.  It still took hime two or three years to get diagnosed.  So the idea that lyme is a possibility is not so far fetched.  Montana doesn't have lyme disease because we're not testing for it, though we're not testing for it because we 'don't have it'.

My daughter's homeroom teacher (a junior high science teacher) has helped at least two or three local people get diagnosed due to her familiarity with the symptoms through her son (who almost died of lyme disease).  In one of the cases, a student went home from school talking about ticks and lyme disease to her mother, who had been sick for months or years but hadn't had any luck figuring out the cause.  When her daughter came home describing her symptoms right on the nose, she got tested, diagnosed, and treated.

Many people post in the Bell's palsy and CFS forums I read about their overlapping lyme symptoms, or about how lyme treatments are going.  The two are reported to be indistinguishable by most methods of testing, but that is not an agreed upon fact.  There is considerable politics and contention surrounding the topic.  If you watch Under Our Skin and follow up with your own research, you come away with a pretty strong acknowledgement that some conspiracy theories are just not so easy to disprove.  Some things sound unbelievable and far-fetched because they are attrocious, not because they are untrue.

So, while Montana does not have the right kind of tick, and therefore does not have lyme disease, it is not really disputed that we may have a Lyme-disease like agent adapted to local ticks, which an eye opening article refers to as a possible "cousin" to Lyme.  A similar article citing the same source (Epidemiologist Todd Damrow) describes a patient with the 'mystery illness' having been helped by medication. 

Other doctors support the possibility of lyme disease in Montana and report lyme positive patients who haven't traveled outside of Montana (also noting that insects are not the only transmission method).

Although these sources are all clearly of the same mind and possibly drawing conclusions based on the same general influences of thought, this certainly does not discredit them nor those influences, nor the validity of their doubts.  In a addition to not looking for lyme disease here, reporting may also be flawed, and seems likely to be, at the very least due to the fact that CDC reporting standards are based on east coast lyme disease.

Officially, we 'don't have lyme' in Montana.  Realistically, the degree of certainty with which patients with lyme disease similar symptoms are told they must have something else does not seem at all justified.

What I look like when I listen (a few reflections on my face)

An Eric Gillet photo from Cheryl's wedding rehersal

I like this picture.  I posted some of Eric's pictures of Cheryl and Miguel before their wedding (he took their engagment pictures, which were amazing, and his work is captivating, to say the least).  In chatting with him before the rehersal, I told him I have a special nack for ruining pictures, and he saw first hand after not realizing how serious I was, that I do have an uncanny ability to close my eyes and contort my face as a shutter closes.  The above photo, though, I like. 

My face was tired a lot that weekend and there is a fair amount of asymmetry in my face in other pictures, and now in general, even compared to earlier in my recovery.  I also discovered that I have no control over my 'lesser' neck muscles on my Bell's side.  I don't know if this is new or if I just didn't notice all this time.  They aren't muscles I think I need for anything.  But, by the way it feels to smile these days, there may be some other muscles that are either regressing or that did not heal the way I thought they did.

Most people would never know now by looking at me that I had Bell's.  It's visible in some photos, espcially when my face is tired or when I couldn't tell my Bell's side wasn't smiling, so I didn't correct it.  In this picture, though, it is hardly even visible to me.

I don't spend time thiking about it from the perspective of outright vanity, and interestingly that didn't even bother me a whole lot when I didn't know if I would heal.  Frankly, I care more when I occasionally get a zit in various ridiculous looking spots on my face.  I rarely spend time on my appearance.  I thought about it in terms of attractiveness to my husband, though, I guess, as I healed.   But not in the way you think about your hair or acne or crooked teeth when you're a teenager and you (truly, though not consciously) believe your value and acceptance are dependent on those things. 

It worried me more with my kids and with interpersonal communication.  People responded to me very, very differently when I couldn't smile.  Responses ranged from akwardness to outright hostility.  The differences in my face now impact interactions less, of course, but there are still subtle differences, both in my face and in the way I feel during conversations where subtle facial cues are important. 

This photo captures how I feel a lot of the time around people.  Not entirely sad, but someimes at least a little separate...working at connecting.

Like many major illnesses, Bell's leaves most of us a little wiser and more grateful than we were before, but also just unexplainably different.

8:48 pm, October 22....my third recovery

Me dancing at Cheryl and Miguel's reception,
photographed by my daughter

At that moment, a wave of certainty washed over me.  One big, invigorating, epiphany-style, see clearly through the CFS-fog wave.

I have little moments like this from time to time, but three moments so far (including this one, at a random moment during Cheryl's wedding reception) have brought monumental waves of certainty that I will be okay.

The first was watching the sea turtles the day we first saw them this June in Waikiki and the second was watching them roll in the waves at the same spot in September.  These moments are gripping, like the rays coming down from the top of a fancy cathedral and falling into the hands or onto the faces of statues of angels and saints when you are a twelve year old being raised catholic, or focusing on a rare species you are dying to see and having it cross your path just then.

More Yoga ~ Less Pain

In my early months of CFIDS, yoga was too much for me.  This is certainly not comprehensible to people in full health.  But there it is (and here are some pre-CFIDS yoga photos from a Glacier backpacking trip in 2009).

An awesome sleep technician with fibromyalgia lent me a DVD she had been using to manage pain.  She warned me that it would not feel like much when I was able to do it, but to start slow, as it would be more for my body than it seemed.  She said 20 minutes made her sore for a week.  I couldn't grasp that until I tried it, and she was absolutely right.  Yoga was always calming for me pre-illness, especially in live classes, but it wasn't 'enough' for me if I were looking for a work out or trying to build strength.  But five minutes was indeed enough to make me sore.

I pulled my hip, because apparently I'm 70 years old now

So, I think its because of lack exercise, but until its better I won't be getting any.  I am planning for it to go away by tomorrow so I can get back to yoga.

When I saw a rheumatologist last year (CFIDS patients have no shortage of doctors in their lives) he told me I have hyperflexion (more elastin than collagen, causing my joints to all bend backwards).  He said I probably never noticed it becuase I had been very fit as I entered my twenties (as a wildland firefighter and avid backbacker/mt biker, etc.) and did not feel any of the pain I might have otherwise started to feel by my thrities.  He showed me how weird my joints are, but they are the only joints I have so I never really knew that was different.  I never had to worry about my knees locking, they just bend backwards.  Apparently its very common and only causes problems if/when people's muscle tone decreases because the joints rub together and you can end up with arthritic-type conditions.

Crash

Having felt fairly good this week, I am very bummed to be here again....that place we land when we "crash" from over-exertion.  Two hours at the park yesterday with my kids right after a doctor's appointment?  Something I ate?  Bickering with my husband?  Writing to my lawyer?

Most likely that last one.  It's a doozy.  I sent comments on my notice to file for my formal EEO disability discrimination complaint.  Several months into the process and it still seems sureal. 

But it is very clear to me that my recent improvements have come from a complete seperation from work and finally being isolated from the needless conflict.  Today, though was a bummer....I had to put myself back into that mental space long enough to write out my comments.  And having recieved the notice last week, I've had several days now for those thoughts to creep their way in.  Today was the first day in a while that I couldn't meditate my way through it.  I thnk I was too tired by then, AND I know that drinking even part of a latte was a mistake, for the caustic chemical effects and the crash. 

It was so warm and nice smelling, and I had all of stronger latte earlier this week without much harm.  But today I should have known better.

So here I am.  Blech!

I would love it if tomorrow turned out to be a new day, rather than a continuation of this (pain behind the eyes, headache, monster-sized irritability, neck pain....no stomach pain, no other muscle pain....but I'll stop there so I don't jinx the good parts).

This hypnotherapy sample from youtube usually sets me into the perfect place for yoga, more meditation, or moving on with my day.  I love it and it has helped me a lot (though even this clip couldn't really penetrate today).  If it doesn't work, search for "awaythroughcfs" on youtube.