So about a month ago, I had my last tele health appointment with my specialist. I say last, because 10min in she said "I have good and bad news". Well, the good news is for British Columbia where she is going to run the complex illness centre for Lyme, M.E./CFS and Fibromyalgia. The bad news is for all of us in Ontario whom she's treated (myself for 8 years).
Here's an article about it: http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html
She is the only full time specialist in Ontario, or should I say "was". She hasn't been taking patients for a few years now.
So, not only am I without a specialist, I'm also without a Dr. I do have a very nice NP, however, she is not up to date on any research or willing to prescribe anything without a consult. She may try to get the clinic's ID Dr. (Infectious Disease) to consult on my case, however, based on my experience here, I'll be lucky if he even believes this disease exists, let alone be willing to treat me.
It's strange, I feel so alone now even though I only saw Dr. B a couple times a year and we never found anything especially effective. She was always up to date with the research and had patients on various "protocols". She was willing to try things and was always very supportive and empathetic. She helped me get provincial disability and later accommodations when I was in the Masters of Education.
It's a strange new world without a medical ally.
My health has also taken a dive again (hopefully temporary). I've spent the last 4 days with major stomach issues as well as an M.E. (fatigue and immune) crash. Hopefully it passes quickly.
Oh, upnorth, I am sorry to hear this. It is so difficult to find a doctor who gets it. We come to rely on them. At one time we thought about moving to SE MN just to be closer to ours! I am also sorry to hear you have gone back a bit with your stomach and fatigue. That stinks! I would think the stress added to the immune systems battles cannot help. Hang in....
ReplyDeleteI completely understand - people do not quite comprehend that for us our doctors - the ones that understand - are a life line of sorts - i would make a few suggestions...is there anyway she would "see" you via the phone or Skype - especially if you only check in on occasion - ( i admit i don't know how health care works in canada so perhaps this is not possible) second - ask her to write a letter to whomever is your new physician - therefore you have an advocate in writing - briefly stating what you are being treated for , the challenges and where they can become for informed - maybe coming from another physician it would give you that advocacy we all need. Best to you. Heather
ReplyDeleteYes, I asked about long-distance and she isn't doing that for any of her patients, which actually, I understand. She would have to do it for free as BC wouldn't cover Ontario patients. She did promise to write my new physician a letter. I hope she is able to do that. Thanks for commenting on my blog, Heather.
DeleteOh Upnorth...I immediately thought of you when I heard her announcement in the news awhile back. I knew that you were one of her patients and thought immediately of the impact that would have on you as well as on the CFS/ME/FMS people of Ontario. It is very important to have medical people who at least understand these illnesses (many/most Drs. do not even on a basic level) but much better when they totally get them.
ReplyDeleteSorry to hear you're experiencing stomach issues. Hopefully, they will be temporary.