Sunday, June 2, 2019

a possible diagnosis

I've been struggling with health problems most of my life, but especially for the last 16 years or so it's been pretty debilitating.  it really started coming to a head over the wintertime, and then I just never rebounded after my fall in February...  well, I rebounded during my fall, but the symptoms just got worse, hehehe.

I've been trying to find the answer to my problem(s) for many years as well, as someone with an unknown but chronic illness usually does.  my research led me to thinking of Lyme disease as the culprit to my woes, and a couple of my real life friends stepped forward, with either themselves or a loved one with lyme, and a wonderful doctor who will get to the bottom of whatever my problem stems from.  they both strongly suggested I go to Northampton Integrative Medicine.  Northampton is an hour away from me, and I hate driving, but if they could figure it out, and if they were as wonderful and friendly as I heard they were there, then I was ready!

the many symptoms I've been dealing with for way too many years include, but not limited to;

migrating pain in muscles and joints,
swollen glands,
cold hands and feet,
low body temperature,
symptoms worsened by temperature changes and stress,
symptoms worse after activity,
muscle twitches,
muscle weakness,
heart palpitations,
chest tightness,
brain fog,
'burning skin' feeling
tingling skin feeling,
photophobia (light sensitivity),
noise intolerance,
unrefreshing sleep,
difficulty falling and staying asleep,
depressed mood,
panic attacks,
medicine sensitivity,
odor sensitivity,
tons of cognitive issues (word finding, following conversations, name/face recognition, short term memory loss, long term memory loss, understanding what I've read- a real issue, for this voracious reader!)

new symptoms;
tremor- like butterfly in toes and other muscles,
'bobblehead'- when I move my head to look at something, it bobbles,
balance issues,
unstable gait,
sudden eye/vision change,
alteration of smell,
weakness- difficulty standing and walking the legs are too weak

I have better days an worse days, of course!

Lucy enjoys my 'nest making' skills with pillows 
that support me
when I'm feeling horrible

first I needed to see my new PCP.  I had been to this pcp before and fired them, but there was no other doctor close by, and I needed close with all my issues, so had to come back.  my initial meeting with the same NP who rubbed me the wrong way many years ago had not changed her colors since I saw her last.  my sweetie was with me, thankfully, and helped me to engage with her so to get as many needs met as I could.  unfortunately, she was unwilling to listen to my tick history, arguing with me about chronic Lyme disease,  she didn't order the tests needed, go the extra mile and she gave up when tests came back negative (not a surprise with faulty lyme testing) and referred me to a rheumatologist.  meanwhile sweetie called to get an appointment for me in Northampton.

my first appointment with Bryna at Northampton Integrative Medicine was amazing.  she was attentive and empathetic to my pain, listened to my tick history, going back to childhood on the farm and vacations on cape cod where we parked our bikes by the 'tick bush'.  if I can remember calling this bush a 'tick bush' when I was 5 years old, there is a high chance I saw many ticks there and had gotten bit way back when.  we suspect I had gotten reinfected while working closely with a wildlife rehabber from 2010-2012 in a high tick area.

anyway, Bryna took my history and symptoms and told me she's pretty sure I'm very sick with Lyme disease (though I could be much worse, from stories I've read of seizures and heart attacks!).  she then tested me for everything she could think of that could give me these symptoms, taking 14 vials of blood.  she wants to make sure she has everything she needs for the correct diagnosis, but she set me up with tinctures of herbals to get me started on healing from this very scary bacteria that is possibly boring it's way throughout my body as we speak.

being creative with my healing these days
what my canvas looks like, now

I'll know more when the test results come back about the various other things; co-infections from lyme, inflammation diseases, vitamin issues...  the actual lyme test she ordered is the better one (the western blot test, rather than the ELISA), though both tests are horribly unreliable.  there are many, many false negatives but no false positives, no matter what the doctors try to say.  I'm very new to the lyme community, but I'm pissed about treatment from the medical community, the resistance and cover-up that has been going on throughout the years, and the ignorance out there still because of falsehoods told.   it's very lonely being in this place of illness, pain, misinformation, and controversy. I'm not articulate about any of this, but below are some links to get you started if you wish to gain knowledge about this true, and deadly, epidemic.

good article

chances are Lyme disease will hit you close to home soon, if it hasn't already.

anyway, I'm taking a break from painting while I'm in treatment, as it gets worse before it gets better, and will be a long road to remission (there is no cure, but people can live well in remission).  I have no energy, and the pain and nausea are high.  if I were to have enough energy to create, it's not the kind of energies I want in a canvas to sell.  I may decide to start an art journal for this time of my life.  just to play for a few minutes at a time when I'm able.  but the stress of having to make something to sell is just too much for my health right now.

I'll probably be pulling my paintings from Bates as well.  we're paid up until the end of June, and then we'll figure out if taking my name off their list of crafters is the best thing to do.  I have yet to go thru the big buying season.  easter and mothers day didn't give me any sales.  I'm rather frustrated that I've spent almost more money than I've earned by setting up there.  too many amazing artisans to choose from!  if I do choose to pull out, I'm risking the chance to get back in before christmas sales, as there is sure to be a waiting list of crafters.  I don't know, I'm weighing pros and cons, but I don't have many finished paintings that are small enough for my shelf and 'good enough' to sell there that I can re-arrange my shelf every once in a while so it's not just sitting there getting dusty and old looking to repeat browsers.  we'll see.

animals are great, and horrible, for healing.
the repetitive out-in-out isn't very restful
but the snuggles are the best!

I'll be updating here and there when I can, hopefully with better news and more artistic shenanigans than health crap.  this isn't a health blog, and I don't want it to become one, but I also don't want it to die a slow death, either.  I'll be back!

until later,


  1. My best friend has bobblehead, but no Dr. has ever found out why. They also think she has FM too. She is not one to continue with a Dr. as she can't afford it with her insurance.

    1. hi sandy. the theory these days from a lot of people in lyme, is that fibromyalgia, ms and a host of other 'new' illnesses, is that they are all interconnected with Lyme disease. a person doesnt need a doctor to treat with herbal remedies, though it will still cost a bit, out of pocket, BUT you won't be throwing money into prescription drugs that are dulling the symptoms and not treating the source. I do understand the frustration of not being helped by health insurance and doctors! it's not right and people are actually dying from this! very scary, and I'm going thru lots of emotions with this diagnosis.