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.
Tuesday, July 31, 2012
Tuesday, July 24, 2012
....and holding
I'm still doing better. I feel less sick. I have more energy than I have for a year, maybe two. I am maybe 10% improved overall, although it is so hard to quantify. I would say even more when it comes to immune symptoms. I have periods of the day without a sore throat or lymph pain (they still hurt at night). The POTS and OI are still quite bad (summer, heat, you know) and I've had a few scares with significant blackouts. But throat, fevers, breathing ache, and malaise are much better.
Instead of 1-2 hours of the day not horizontal (where I am able to sit-up or stand), I'm spending maybe 4 upright. This is wonderful. For the first time in a long while, I don't hate my life. All it took was not feeling like hell every minute of the day "go figure".
That being said, I had a friend visit and tried going into a big store (Michael's) and it was a disaster. Not only did I get flu symptoms and dizziness from the standing (and the lights and the sounds), but I crashed the next day from the effort. It's funny, because if I do something similarly active outside I haven't been crashing every time (maybe one out of 3 times). I think it must be in part, the standing still which wrecks havoc with those of us who have fairly severe OI (orthostatic intolerance). Also, perhaps because stores are especially mentally stimulating they are more exhausting.
I know someone might read that and say "you must have a phobia of crowded places", but really, I'm not scared of stores at all (not that I was ever a shopper - I never have been), but for some reason they drain me and cause crashes in the same way driving does (despite the fact I used to love to drive).
Most Dr.'s who research M.E. call it a neuro-immune disease (sometimes a neuro-endocrine-immune illness). There are definite aberrations in both the nervous system and immune system. While I have always been more aware of the immune symptoms, I definitely get some nervous system ones. Like crashing from stores, driving, the severe OI (which is an issue with the autonomic nervous system), as well as periods where I get fairly significant tremors and muscle twitches.
I won't be blogging much this month partly because I'm a little busier what with the better health. I'm also spending way less time on the computer (doing a lot of reading for one).
I hope everyone who reads this is also doing well, having a good summer. If not, I have my fingers crossed for all of you. If you had told me 4 months ago that I would ever feel this good again, I wouldn't have believed it. (Not to get carried away, I'm not well or healthy or anything, I've just had enough of the illness cloud lift to remember I have a personality and things I enjoy in life). Here's hoping it lasts.
Instead of 1-2 hours of the day not horizontal (where I am able to sit-up or stand), I'm spending maybe 4 upright. This is wonderful. For the first time in a long while, I don't hate my life. All it took was not feeling like hell every minute of the day "go figure".
That being said, I had a friend visit and tried going into a big store (Michael's) and it was a disaster. Not only did I get flu symptoms and dizziness from the standing (and the lights and the sounds), but I crashed the next day from the effort. It's funny, because if I do something similarly active outside I haven't been crashing every time (maybe one out of 3 times). I think it must be in part, the standing still which wrecks havoc with those of us who have fairly severe OI (orthostatic intolerance). Also, perhaps because stores are especially mentally stimulating they are more exhausting.
I know someone might read that and say "you must have a phobia of crowded places", but really, I'm not scared of stores at all (not that I was ever a shopper - I never have been), but for some reason they drain me and cause crashes in the same way driving does (despite the fact I used to love to drive).
Most Dr.'s who research M.E. call it a neuro-immune disease (sometimes a neuro-endocrine-immune illness). There are definite aberrations in both the nervous system and immune system. While I have always been more aware of the immune symptoms, I definitely get some nervous system ones. Like crashing from stores, driving, the severe OI (which is an issue with the autonomic nervous system), as well as periods where I get fairly significant tremors and muscle twitches.
I won't be blogging much this month partly because I'm a little busier what with the better health. I'm also spending way less time on the computer (doing a lot of reading for one).
I hope everyone who reads this is also doing well, having a good summer. If not, I have my fingers crossed for all of you. If you had told me 4 months ago that I would ever feel this good again, I wouldn't have believed it. (Not to get carried away, I'm not well or healthy or anything, I've just had enough of the illness cloud lift to remember I have a personality and things I enjoy in life). Here's hoping it lasts.
Friday, July 13, 2012
sustained upturn
I continue to be improved. I would say maybe 5% overall, perhaps a little more. The main improvement is with both energy and sustainability. What I mean by sustainability, is I can do more without crashing, and my crashes are shorter. While in the disability scale 5% is not a lot, it is enough that I'm not complaining...honestly, I'll take it!
I also notice a burden being lifted mentally and emotionally. With a little ease-up in the sick realm, I am also coping better with life in general.
Why am I improved? Honestly, I am hesitant to say it, but I think it must be in part a result of the high dose B12. I have been giving myself B12 shots now for maybe a month or just a little more and the improvement coincided almost exactly with the start of the B12 (beginning a week or so after).
I also speculate, and I may be grasping at straws here, the increased Vitamin D and sunlight. From the start of the spring I have been spending more time outside. Sometimes just in my chair, but also short walks around the gardens or even sitting and weeding.
So while I have cancelled 3 trips to my old stomping grounds in the last 2 years due to health, I finally bit the bullet and came!!! My old stomping grounds is where I lived and worked the 6 years in Minnesota prior to getting the Mono and subsequent M.E./CFS. I was a wilderness guide here, also working a little at the local college teaching physical education (outdoor) classes.
Because I live between three and four hours away, and many of my friends were here, I used to get back a few times a year. Then I started getting worse. I have had trouble making the trip even as a passenger. As well, many of my friends that lived here have moved on.
Last week, my friend N came up to visit. It had been two years since we'd seen each other in person. On a bit of a whim, I took the risk to come home with her. The journey was tough (just a ride in the car, maybe 4 hrs). I was in tears by the end. But after a day and 1/2 resting, I popped back up to my status quo. And now she is out in the woods so I've mostly just been doing what I do at home - resting in bed.
Resting....except instead of traffic, neighbour dogs barking, roommate noise, I hear the wind through the aspen and the birds. It is so peaceful.
I have pushed a little too hard, though....I get here and people want to see me. And they just don't understand chronic illness from inside a "well" body. I think it's just too far from reality. They don't realize that for me, just sitting up for more than a short period comes with consequences (and because it hits a day or so later they don't get the joy of seeing the consequences).
Still, I'm glad I came, and I'm preparing mentally in case I have a crash from the trip...but I'm also crossing my fingers that the crash is non-existent, or at least short. I'm hoping this improvement in resilience continues.
I'm posting a few photos - me and N's dog, a nearby lake (there are lakes everywhere here), a frog I saw, and the road where I'm staying.....
I also notice a burden being lifted mentally and emotionally. With a little ease-up in the sick realm, I am also coping better with life in general.
Why am I improved? Honestly, I am hesitant to say it, but I think it must be in part a result of the high dose B12. I have been giving myself B12 shots now for maybe a month or just a little more and the improvement coincided almost exactly with the start of the B12 (beginning a week or so after).
I also speculate, and I may be grasping at straws here, the increased Vitamin D and sunlight. From the start of the spring I have been spending more time outside. Sometimes just in my chair, but also short walks around the gardens or even sitting and weeding.
So while I have cancelled 3 trips to my old stomping grounds in the last 2 years due to health, I finally bit the bullet and came!!! My old stomping grounds is where I lived and worked the 6 years in Minnesota prior to getting the Mono and subsequent M.E./CFS. I was a wilderness guide here, also working a little at the local college teaching physical education (outdoor) classes.
Because I live between three and four hours away, and many of my friends were here, I used to get back a few times a year. Then I started getting worse. I have had trouble making the trip even as a passenger. As well, many of my friends that lived here have moved on.
Last week, my friend N came up to visit. It had been two years since we'd seen each other in person. On a bit of a whim, I took the risk to come home with her. The journey was tough (just a ride in the car, maybe 4 hrs). I was in tears by the end. But after a day and 1/2 resting, I popped back up to my status quo. And now she is out in the woods so I've mostly just been doing what I do at home - resting in bed.
Resting....except instead of traffic, neighbour dogs barking, roommate noise, I hear the wind through the aspen and the birds. It is so peaceful.
I have pushed a little too hard, though....I get here and people want to see me. And they just don't understand chronic illness from inside a "well" body. I think it's just too far from reality. They don't realize that for me, just sitting up for more than a short period comes with consequences (and because it hits a day or so later they don't get the joy of seeing the consequences).
Still, I'm glad I came, and I'm preparing mentally in case I have a crash from the trip...but I'm also crossing my fingers that the crash is non-existent, or at least short. I'm hoping this improvement in resilience continues.
I'm posting a few photos - me and N's dog, a nearby lake (there are lakes everywhere here), a frog I saw, and the road where I'm staying.....
Monday, July 2, 2012
Better Week
It's nice to have good news once in a while. I had a decent week on the whole. One of my best in a year (which isn't saying a lot really). I have had two major crash days, however, in both cases I can peg why (in other words, classic post exertional malaise - crashing 36 hrs later) . The first was from a swim/dip in Lake Superior = worth it, and yesterday I was horribly crashed from doing some cleaning the day before around the house.
My housemates are away. In some ways it's wonderful. For one, the house is quiet. And secondly, the house is relatively clean with a very small effort on my part. On the other hand, on my good days I get a little lonely. On those days I miss my peeps. Like everything, there are both pros and cons to living alone.
Things sure have changed. When I lived alone, I got lonely sometimes - but usually it took days or weeks of not talking/seeing anyone. Now, I'm alone for a few days and I notice it.
That being said, for the most part I am savouring the solitude....it will be over too soon. I've especially been grateful on my crash days not to have to rally to visit or interact. When I feel that ill my mood just plummets and it's all I can do to deal with the sick, fluy body, let alone the social.
.....I feel like such a cantankerous person sometimes. My self-worth is tested already by feeling sick, unproductive, and useless - I find my moodiness around others makes me feel even worse about myself. I guess the solution would be to become a better, nicer person - gain some moral strength. I'm not holding my breath.
A few health related notes:
My housemates are away. In some ways it's wonderful. For one, the house is quiet. And secondly, the house is relatively clean with a very small effort on my part. On the other hand, on my good days I get a little lonely. On those days I miss my peeps. Like everything, there are both pros and cons to living alone.
Things sure have changed. When I lived alone, I got lonely sometimes - but usually it took days or weeks of not talking/seeing anyone. Now, I'm alone for a few days and I notice it.
That being said, for the most part I am savouring the solitude....it will be over too soon. I've especially been grateful on my crash days not to have to rally to visit or interact. When I feel that ill my mood just plummets and it's all I can do to deal with the sick, fluy body, let alone the social.
.....I feel like such a cantankerous person sometimes. My self-worth is tested already by feeling sick, unproductive, and useless - I find my moodiness around others makes me feel even worse about myself. I guess the solution would be to become a better, nicer person - gain some moral strength. I'm not holding my breath.
A few health related notes:
- The little bit better energy I've had for a couple weeks has coincided with me taking B 12 injections, so I'm hoping to convince my specialist to continue them when I see her tomorrow morning.
- I saw the endocrinologist about the thyroid cysts, it looks like they are nothing to worry about - we will ultrasound them in 9 mo and if they still haven't grown, let them be (they are very small and haven't grown in 5 years).
- My CT scan of my abdomen (with contrast) showed some haziness around my pancreas and some small lesions on my liver (these are fairly common and usually nothing to worry about). However, due to the haziness of my pancreas I'm going for an MRI to rule out "pancreatic cancer and lymphoma". Sounds scary, but I'm not too worried as my gut issues and pain are so much improved I'm almost back to my old diet.
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