A spotlight on healthcare and Lyme
I have previously written a little about the politics and limitations in resources for patients with chronic Lyme disease in Canada, trying to focus on hope for change and where resources can be found within the current controversial climate. Out of respect for the doctors who do have my back and have been wonderful resources and advocates to the degree possible within the current system, i’ve written sparingly about how the challenges in the medical system have affected me directly.
But my current situation compels me to shine a more personal spotlight on a resource gap that needs to be filled. Both as my own cry for help in a desperate feeling situation and as a voice calling for change for everyone affected.
Many who know me or have been following this blog are aware that one of the most debilitating aspects of Lyme for me in the past year has been severe environmental sensitivities. Similar to how traces of peanuts in the air might trigger an anaphylactic reaction in someone with a peanut allergy, for me, micro amounts of everyday chemicals, molds, dusts, dander and foods can trigger hours to days long stroke like symptoms, migraine headaches, increased nerve pain, temporary loss of the use of my limbs, vision and my ability to speak.
The sensitivities became so severe the past year that I became mostly housebound, unable to invite friends or family inside or visit a doctors office. Because of this, my doctors’ appointments also became held via Skype and I learned to self administer IV’s. I stopped tolerating most clothing or my bed (so am sleeping on a thermarest wrapped in Eco plastic bags on a table – and I made a cover for myself with the same bags stuffed with unbleached paper towel for warmth). I can only eat about 10 foods, and it can be a major crisis for me if one of the staples of my diet are not available for even a short time. And I need a very specific home for the air to be healthy for me .
Even the air outside can make me ill, especially if it contains exhaust, residues from renovations, smoke or scents like fabric softener. One day, in reaction to my neighbours staining their balcony, my lower legs and feet suddenly swelled so drastically that my doctors were concerned for my heart. But instead of immediately going to emergency, or having a place to retreat to, I had little choice but to monitor myself at home for signs of decline.
At my very worst I was unable even to open a window to the outside for more than a few minutes. Friends would leave food at my doorstep and Skype me from vacation spots, and I would get quick hand hugs through the door to have some human contact.
New treatments this past spring increased my physical strength and reduced my reactivity enough to be able to sometimes make my way into the woods where the air is fresh and walk there a little. More recently I’ve been able to do some short drives in my car when it’s warm (I cannot turn on the heat and still am searching for tolerable winter clothing).
I know that there is hope for recovery with adequate resources and a stable healthy for me home.
Right now I’m in a makeshift clean room in the acute care ward of my local hospital, not yet able to find a rental house that I can live in without severe neurological decline. Thankfully we have been able to make a room safe for me (we replaced bedding with my ziplock thermarest solution, took down curtains, washed everything down with vinegar and are filtering the air). Myself and my doctor are searching for resources as I continue to search for a tolerable home.
It is the medical context behind this search for a healthy space (alongside ongoing treatment resources) on which I want to shine a spotlight….
A spotlight
Severe chemical sensitivity can be caused by bacterial infection, exposure to toxic mold or chemical injury. The Canadian human rights association has defined multiple chemical sensitivity as a legitimate disability, and it’s is widely agreed-upon that a place to live that’s free from environmental triggers is essential for recovery (from my understanding, so the body can decrease it’s toxic load and so the nervous system and other systems affected can heal). And yet there are no tailored housing solutions or inpatient treatment centres built to accommodate and treat the severe reactivity of such individuals. Because of this, even accessing treatment is challenging (hence me self administering IVs) and it can take enormous financial resources to secure healthy accommodation.
If Lyme disease happens to be the cause of your chemical sensitivity the medical controversy surrounding this illness in Canada adds further financial and medical complications.
Essentially, even though our Federal Public Health Agency has testified in Parliament that Lyme Disease is one of Canada’s fastest-growing infectious diseases, because of medical controversy, treatment resources in Canada are limited. Canadians with late stage Lyme must seek help from out-of-country specialists. In this they are not covered by insurance or provincial health care.
As many of my friends who have helped me financially know, I personally have depleted my savings of over $50,000 and drawn deeply on my lines of credit in order to fund my recovery. This has included personally paying for medical consultations, supportive IV treatment, supplements and antibiotics (in addition to my living expenses), much of the time being unable to work. (For a detailed account of how Lyme has shown up in my life see this essay).
My community has generously held two Fundraisers for me which helped me to keep my head above water for the past year and a half. For several years the generosity of friends letting me stay in their weekend homes (and in one case a friends primary home while he lived in his van) has allowed me to have a tolerable place to be. I am extremely grateful for these gifts and have made significant progress with my treatment because of them. But As I again am searching for a healthy place to live that’s close to community supports (and a way to fund it in the longer term) or a long term stay option in our medical system that will accommodate my needs and treatments, the stakes to finding one or the other (my recovery and my life) feel high. I need a long-term solution. As do many others in Canada with Lyme disease.
Faith
I know that all that I can do is keep searching for resources – and to the best of my ability stay with faith in a bigger picture and that I will be OK. And have gratitude for all the help and support that I do have.
A while back I had a vision of having found all that I need to heal, accompanied by a deep sense of calm and sense that it’s going to be OK. This has happened before, and so far, no matter how desperate the situation has seemed, every time i have found what I’ve needed and been OK. I’m doing what I can to put my trust in that it will be OK this time too.
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