Travel medicine June 2012

My doctor hypothesized early in my illness that warm weather would help me if I felt good enough to travel.  My husband had his summer airline second job by then, so we tested it with a trip to Hawaii and though I spent a lot of time in the room resting, she was absolutely right.  My turtle trips started last year, and I slipped in a very brief one this year (a couple of weeks ago.  My friend Jenny, in some of my turtle pictures last year, happened to be on Oahu the same days as us.  This first photo is the kids waiting in the ocean while I talked with Greg about flight options for getting back.

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.

Kids in Vegas Part 2 (video, photos, Christopher's hat, lion king tickets, and 3 mile goal)



Katie doing math by the pool



Monday was our first full day, and we sat through the time share gig, as planned, to earn 3 free lion king tickets.  It was still worth it, but of course it went long.  The kids were awesome for the first hour and a half of what was supposed to be a half hour (not that we ever thought it would be that short).  I did get a bit agitated with this one becasue my patience with subjective math is pretty short.  But its comical to watch them turn to Greg, as if he'd be more likely to accept their creative reaoning.  Trust me people, if I'm not buying what you're saying, you lost my husband a long time ago.

Our goal was to get to the Mandalay bay to book our seats and see as much as we could along the way.  It was a lot of fun zig zagging through the crowd and looking up at everything.  Christopher's hat disappeared in the Mandalay and he was pretty distraught until we (very luckily) found it.  The kids didn't know we where we were headed or why, and Katie couldn't stop trying to get me to spill the beans.  The video below shows her face when I finally told her.  They were pretty excited to have tickets to the Lion King for Christopher's birthday (Tuesday).

Heaven is a cookie

Last week Greg made 4 giant chocolate chip cookies, one for each of us.  They were non-dairy, so I could eat them too.  My first chocolate chip cookie in a very, very long time.  It was so amazingly wonderful.  I was full after 1/3 of it, but managed to eath the whole thing.  I haven't been doing all that well with sugar, but this was very worth it.

Then, yesterday, we went out to lunch for Greg's birthday at a new restaurant in town.  The panini I got had goat cheese in it.  I had it without the full amount of cheese, since this was an experiment.  I am intolerant to dairy, probably as a CFS symptom, and also casein (a dairy protein that's in everthing, even non-dairy products, because they put it back into non-dairy foods).  I seem to have done just fine with it--no noticeable stomache pain yesterday, a little bit this morning but I'm not sure its even related.

So....soon I will try pizza!  Yay!

Also, I ordered a latte, but they didn't have soy...they only had almond milk, which is soooo much better.  Their almond milk was frozen, so they had to give me chocolate almond milk, which was terrific with their peppermint flavor/syrup that they make themselves.  Plus, it took him a while to bring it out, so the best latte I've had in months was FREE!

Food is wonderful.

The picture above is a non-dairy mocha cupcake I had in Hawaii that was also heaven, though it took me three days to eat it all.

My Double-Edged Spoons

I just a read a blog on Wellsphere about the spoon theory (a chronically ill woman’s now-famous description to a friend about living with limited reserves).  A rush of memories came back related to my own sharing of the spoon theory and some crazy twists and turns that followed in my story that probably differ from what most people experience when they share it.

After I was diagnosed with CFS, a childhood friend with MS told me to "watch my spoons".  It took me a while to finally ask her what that meant.  After reading it for the first time, I referenced it often to help describe to people what I was going through.

The only down side was sharing it at work.

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.

Turtle Medicine, part 1

I've always loved turtles, but over the last few years I gradually became obsessed with sea turtles and with the idea of seeing one.  In some places and at some times of year that is not a difficult or terribly unique thing.  And when we were on Oahu last year, I went to all the best places.  But I only had one day to go to all the best places and it was not the right day.  I had also snorkled in Kauai a couple of years earlier without luck.  On my second trip to Oahu, I planned to spend a great deal of time in areas where I was most likely to see a sea turtle.  I knew my odds were not great, being sick and having two kids in towe and without my husband there to help.  Our odds went down when we got stuck in LAX for six days, only finally making it to Oahu when trying to get home; both because we could not afford a rental car after six days of LA hotels and airport food, and because I had used up so much energy getting there.

So, it was utterly amazing, a couple days into our trip, while walking along the crowded Honolulu beaches, when we realized the tiny shapes we stopped to watch in the distance were sea turtles surfacing for air.  We watched and watched for quite a long time, hoping they would come closer.  Then a stranger approached us and told me in a hushed tone that she had seen us from down the beach, thrying so hard to catch a glimpse, and that if we went to where she had been, would be a few feet away from feeding turtles.  I can't believe she took the time to come over and tell just us where to go.

We joined the small throng of tourists sitting on a concrete wall reaching out from the beach, with sand on one side and a 5 or so foot drop to the ocean on the other.  The wall was covered in moss that three turtles were feeding on.  I had just discoverd that morning that my camera takes video, so I have lots of videos of the turtles surfacing and feeding, and of kids watching and discussing in awe, and Katie telling each new group how amazing it was that we ran into turtles when her mom had wanted to see them for such a long time.  While I stood there, I got hit a couple of times by waves, getting my purse slightly damp, which was enough to completely destroy my cell phone.  This upset Christopher greatly and he was very concerned that I was going to also ruin all of our money.  He was upset with me for saying that it was worth ruining a cell phone to see the turtles.

Christopher lost interest, but was able to sit next to me and play in the sand.  After a couple of hours, Katie finally lost interest, too, and they played in the water on the beach side of the wall, while I sat and stared for at least another hour.  It was hard not to cry as I watched them.  Toward the end of sitting there, as other watchers had thinned out, I ended up next to a woman my age who was quietly, privately sobbing.

The second I was close to them (without being disrespectfully close to them) I knew I had become obsessed with them for a reason.  They grabbed their bites from the wall ready for each wave to toss them about without their being in full control of where their bodies moved.  In so many ways I've had the magic trained out of me as a scientist.  But what I see when I observe any species eventually prevails over my biological training, because the whole is always greater than the sum of its parts.  And I can feel that there is a real and true reason why so many people all through time have sensed that certain animal species have certain lessons or energies or connections meant for certain people.  I don't know enough about each tradition to say whether I'd call sea turtles totems or guides or whether there's a more appropriate term for what I experienced.  But I cried because I knew I was finding a piece of what I had been looking for.  I understood why sick people travel to all ends of the earth to be healed by something they believe will help heal them, even if they don't realize that healing is what they are seeking.

My CFS, Part 1

As fellow sufferers know, there is a beginning that you can point to for this illness, but only "sort of".  There are too many backward pointsplaguing the back of my mind that could be related or causal to really feel entirely certain when CFS (Chronic Fatigue Syndrome (stupid name)) truly began.

The day it felt like it started I was in a tiny tributary of the South Fork of the Flathead River for work, walking up a stream to tiny for the birds we were looking for to be present.  It was easy walking, as streams go, but less than a mile up I was a different kind of tired.  I had been kinda tired the previous day, but there had been more reason, plus I'd been recovering from a different illness that I hadn't fully bounced back from.  But this particular day, heading back down the stream, instead of scanning the brush for bears and looking for tracks or snakes along the shore, my mind was watching for any potential spot where a human could lay down.....a sandbar, a log, relatively comfortable looking rocks.  Not typical on an easy-walking day.  When I got back to the main river I was ready to ford it right there so I could get to our trail faster....not nearly as safe a spot as where we had crossed to get there.  I was functioning safely enough to listen to my colleague, who tactfully suggested I not do that.  Half way up the very steep trail to our truck, it was very clear that I needed to see a doctor, and I very distinctly remember how appealing a specific moss-covered log across a little ravine looked for taking a nap on.  Something was very clearly not right.  I was safe for hiking and safe for the drive back to my office, but something wasn't right.

Before that day....
I've had sleep apnea for who knows how long, and sinus issues always.  In early 2010 I had surgery for my deviated septum and over-sized turbinae and my should-have-come-out-decades-ago tonsils.  I never really felt like I bounced back, and in May 2010 (amidst considerable work stress) I woke up one morning with Bell's palsy (partial facial paralysis, usually temporary, probably caused by a viral attack to the 7th cranial nerve).  After five weeks of rest, I returned to work with my face almost entirely recovered and my energy levels improving.  By the end of summer I was back-sliding and doctors weren't sure why (my face was fine but my body got weaker instead of stronger).  I knew something was wrong, and began the months-long series of tests that led to my CFS diagnosis.

This is, of course, the bare bones, non causal guessing game version of the story.  But as for most patients, I'm sure, there's too much to tell at any one time.

I kept working part time from home, with mostly support from work.  Tragically for me (since I loved my job), the support of those with the most power over the situation ended abruptly at the end of January, just as I was experiencing dramatic improvement.  That improvement was sadly reversed by a traumatic hostile work setting that I still can't get my head around.  I have continued to recieve tremendous support from numerous other management and non-management colleagues (in general and in the form of a humbling amount of donated sick leave), and I have had my Union (especially our Union President) firmly by my side through this entire ordeal. 

Sadly, As the back and forthwith management escalated, my health plumeted, and I am still coping with the impacts to my health and with the anger I feel at having such amazing progress taken from me.  I am keeping as seperated as I can from the situation currently so that I can gain at least some ground toward recovery, but I will have to bear some exposure again now as I proceed to the formal phase of the EEO disability discrimination complaint process.

Meditation and yoga are helping me tremendously, as several months of intense stress and a dramatic and tumultuous conflict are all far above and beyond what I can safely handle with this disease.  I feel very much as though getting into a setting that will really allow me to recover is not just necessary for recovery in the long run, but also necessary for my ability to function at all....now or at any time in the future.

I was an active person with a part-office, part-outside job and almost entirely outdoor, physically oriented hobbies.  I love to run and hike and cross-country ski and I love my time in the woods as a biologist.  I have  not been allowed to exercise more aggressively than light yoga in over a year now.

After months and months of harassment I have put myself in as much of a bubble as I can, and I have been left alone for the last few weeks.....which has made a world of difference.  I am out of bed more, I'm driving more, and I'm much better able to take care of myself and my kids while my husband works.

I am trying to find a balance between my hopes for recovery and my ability to accept and cope with this illness.  And I'm learning to let go of the details of the terrible mess my career has become while still doing what needs to be done for some amount of justice to occur in the end, if that is possible to achieve without losing what little I have of my health again in the process.  This disease may be unavoidable, but my decline over the past several months would have been avoided had multiple laws and policies not been ignored.  I love my job and my life, and while there is no chance for restoring what I had previously in its former state, it is worth attempting some degree of a positive outcome.

The life I'm missing....a couple of pictures of my former work life

Renunciation

I am a novice to meditation and fairly ignorant of Buddhism, aside from sharing the generic generalizations that most of the western world probably shares (peace, chanting, an acknowledgement of wisdom and tranquility without much knowledge or first hand proof of these attributes).  The buddhist analogy for the word renunciation that I just read fits so closely with what I am beginning to experience internally, however, that I wanted to capture it before it flitted away (though I may find later that my ignorance of buddhism has led me to a peripheral or inaccurate interpretation of the concept).  I hope to experience this in a more physical sense, too, when I step free of CFS.

From an article on letting go (http://www.insightmeditationcenter.org/2010/06/letting-go/):

"We can see the Buddhist emphasis on what is gained through letting go by how the tradition understands renunciation. While the English word implies giving something up, the Buddhist analogy for renunciation, is to go out from a place that is confined and dusty, into a wide open, clear space. It is as if you have been in a one room cabin with your relatives, snowed in for an entire winter. While you may love your relatives, what is gained when you open the door and get out into the spring, probably feels exquisite.

One of the nice things about letting go into something is that it has less to do with willing something or creating something than it does with allowing or relaxing. Once we know how to swim, it can be relaxing to float by allowing the water to hold us up. Once we know how to have compassion, there may be times when we not only let go of ill-will, but also let go into a sense of empathy. Letting go of fear, may then also be resting back into a sense of calm."

There are all types of directions I could take this line of thought, but as I am regaining my powers of concentration, I feel that baby steps are the right approach, so I'll let the idea rest for now in its own form.