What is on my mind...
I haven't contacted any level of representation from the federal political parties. My time is running out. I don't quite know what to ask of them. I have looked at the Multiple Sclerosis Society of Canada's website, and I am aware of the current priority issues. Honestly, I don't feel like I am mentally "on" enough to have the level of conversation which I would expect (and want) from myself. I guess it isn't so much that I don't know what to ask, but I fear how it would come out in the moment.
Thankfully, today, one of the parties announced federal funding for prescription drugs...with more details to follow when the full election platform is revealed on Sunday. I KNOW that this is something that I care about.
Next...
Falling asleep is difficult for me. There was a time, within the past couple of years, that it would be lights out the minute my head hit the pillow. Not so much anymore. I can't get comfortable. And worse, I can't turn my brain off. Thoughts shoot through my mind, like a nasty game of dodge ball. I never know where they are coming from...no pattern, no rhyme or reason.
Last night, what stands out most to me, is the following thought:
My body (never mind my non-physical being!) has endured enough. This is what makes me wonder if I am actually dealing with things as well as I think I am...it all of a sudden hits me that I have experienced more in the past two and a half years than many will experience in a lifetime. The scary thing is, with my seeming un-luck, I'm likely to go through more!
Sure, I can list the illnesses: MS, PCOS, Endometreosis, Appendicitis, Peritonitis, Pancreatitis...did I leave anything out? But how about the countless needles and IV's? Sometimes the needles, take blood, sometimes they inject heavy duty medications to either "trick" my body (yeah, let's add induced artificial menopause to the previous list) or wrangle in vicious attacks on my body. MRI's, CT scans, ultrasounds...and needles that either snatch a piece of my liver or suck out my spinal fluid. Let's not forget the catheter and the surgical drain. One exploratory laproscopy, one surgical laproscopy, one failed hysteroscopy, and one successful hysterscopy...and a sleep study.
I don't think that I have missed anything. I feel like I'm a science project. Or a lab rat...if only Dr. Schmidt was still my neurologist. In the month of October, I will have two intra-muscular injections to stop my body from producing estrogen. I'm also scheduled for more blood work, and MS doctor willing, I'll have all of my scheduled Rebif needles. I'm having an ultrasound to check out my pancreas, and a CT scan to look at the rest of my abdomen (in particular, to look for an appendix).
Thank goodness my colonoscopy isn't until November! No really, I'm serious.
Emily
Little Advances
Posted in on Wednesday, September 24, 2008 by Emms
I've had a couple of personal "breakthroughs" in the past week.
Last week, Jason and I spent a few days at his grandparents trailer, a couple of hours east of Winnipeg. To keep ourselves occupied, we indulged our interest of "game playing": cards, trivia, cribbage, tri-ominos...and the list goes on. The best part of all, is that I felt "fog-free" enough to learn three new card games! I had enough concentration and memory power to learn new games, and be happy at the same time!
*I was so fog-free that I skunked Jason twice in Crib, and beat him three times at Scrabble. And I won one of the new games.
My other breakthrough happened yesterday, when I drove myself to the shopping mall...on the other side of downtown! I shopped with C. , and I even drove myself home. But let's just focus on that part, and not that fact that I am paying for it with sleepiness today.
Another exciting development for me is that I have read three novels in the past month. I can follow the story, I don't have to re-read lines or paragraphs, and I can hardly put a book down. This is not exciting because I just learned how to read...but rather I have a greater ability to retain and concentrate than I did one year ago. I mean, two years ago, the letters on the page made me wobbly, and after that moving my eyes back and forth to follow a sentence made me wobbly...this is huge!
Small things. Big impact.
Emily
Last week, Jason and I spent a few days at his grandparents trailer, a couple of hours east of Winnipeg. To keep ourselves occupied, we indulged our interest of "game playing": cards, trivia, cribbage, tri-ominos...and the list goes on. The best part of all, is that I felt "fog-free" enough to learn three new card games! I had enough concentration and memory power to learn new games, and be happy at the same time!
*I was so fog-free that I skunked Jason twice in Crib, and beat him three times at Scrabble. And I won one of the new games.
My other breakthrough happened yesterday, when I drove myself to the shopping mall...on the other side of downtown! I shopped with C. , and I even drove myself home. But let's just focus on that part, and not that fact that I am paying for it with sleepiness today.
Another exciting development for me is that I have read three novels in the past month. I can follow the story, I don't have to re-read lines or paragraphs, and I can hardly put a book down. This is not exciting because I just learned how to read...but rather I have a greater ability to retain and concentrate than I did one year ago. I mean, two years ago, the letters on the page made me wobbly, and after that moving my eyes back and forth to follow a sentence made me wobbly...this is huge!
Small things. Big impact.
Emily
in the news
Posted in MS Atlas, news, Winnipeg on Tuesday, September 23, 2008 by Emms
I have a number of potential posts going through my mind these days: my own health updates; MS news; handicapped parking in Winnipeg (where I live); a man found dead in a Winnipeg hospital emergency room; and Winnipeg's new slogan. It almost feels as if I have been behind!
Maybe I will start with Winnipeg's new city slogan..."The Heart of the Continent". The new slogan has replaced the decades old, "One Great City" slogan, found on the road signs that greet motorists entering the city. The problem is, Winnipeg is NOT the heart of the continent, Rugby North Dakota is! Geographically speaking, Winnipeg is the longitudinal centre of Canada...so at best, it is the "Heart of the Country". And we can debate that in many ways...as we could debate One Great City too.
You may have heard more news bits about MS lately, and I surmise this is because people (health professionals, volunteers, those affected by MS) from around the world met in Montreal recently to discuss MS...Living with MS...Global Perspectives on Current Issues (or the World Congress on Treatment and Research in MS). The "hot" vitamin these days, vitamin D, has been highlighted at these meetings, and thus hit the news again. Vitamin D...friend and foe?
It isn't news that a lack of Vitamin D is a possible contributing factor to the onset of MS. Vitamin D levels have been measured in MS patients for some time. Now, studies are looking at if there are successful ways to combat a vitamin D deficiency early in life. But a lack of vitamin D alone is not the cause of MS. So the relationship of D and other issues (including hormonal) are being investigated. Using vitamin D as a treatment for pre-existing MS is also being studied.
*I was told by my MS neurologist, on my very first visit, when he saw the demylenation in my brain, before he said, "It is MS"...he asked me if I was taking Vitamin D. He said that I should be taking 1000iu daily...it won't hurt to take it.
If you have some time, take a look at this:
http://www.atlasofms.org/index.aspx
Last night, unable to fall asleep, I stumbled across this "atlas"...and fell asleep feeling happy to live where I do while learning to live with MS. To sum it up for you, a few years of world-wide research and questionnaires were used to form the stats found in this atlas. The atlas breaks down many aspects of MS (globally!) from age of diagnosis, to home benefits, to driving regulations, to alternative treatments, to existence of government drug funding...and more!
Here are some of what shocked me:
Can a person with MS lose their job because he/she has MS...the answer is NO in only a handful of countries (Canada, Australia, Paraguay)...the answer is YES in more (United States, Finland, Russian Federation).
Mean age of onset (in 1997): Canada 24.5, United States and United Kingdom 32.5, China 30.8, Italy 25
Percent of eligible people with MS who receive disease modifying treatment: Canada 75%, Russian Federation 50%, Australia 80%, Pakistan 90%, United States no data provided.
These numbers (and the hundreds more in the atlas) do beg for further information. Maybe if I read further into it, I would answer my questions. But when I finished reading approximately one dozen of the stats, I was happy to be in Canada.
Okay - that's enough for now. My brain is tired.
Emily
Maybe I will start with Winnipeg's new city slogan..."The Heart of the Continent". The new slogan has replaced the decades old, "One Great City" slogan, found on the road signs that greet motorists entering the city. The problem is, Winnipeg is NOT the heart of the continent, Rugby North Dakota is! Geographically speaking, Winnipeg is the longitudinal centre of Canada...so at best, it is the "Heart of the Country". And we can debate that in many ways...as we could debate One Great City too.
You may have heard more news bits about MS lately, and I surmise this is because people (health professionals, volunteers, those affected by MS) from around the world met in Montreal recently to discuss MS...Living with MS...Global Perspectives on Current Issues (or the World Congress on Treatment and Research in MS). The "hot" vitamin these days, vitamin D, has been highlighted at these meetings, and thus hit the news again. Vitamin D...friend and foe?
It isn't news that a lack of Vitamin D is a possible contributing factor to the onset of MS. Vitamin D levels have been measured in MS patients for some time. Now, studies are looking at if there are successful ways to combat a vitamin D deficiency early in life. But a lack of vitamin D alone is not the cause of MS. So the relationship of D and other issues (including hormonal) are being investigated. Using vitamin D as a treatment for pre-existing MS is also being studied.
*I was told by my MS neurologist, on my very first visit, when he saw the demylenation in my brain, before he said, "It is MS"...he asked me if I was taking Vitamin D. He said that I should be taking 1000iu daily...it won't hurt to take it.
If you have some time, take a look at this:
http://www.atlasofms.org/index.aspx
Last night, unable to fall asleep, I stumbled across this "atlas"...and fell asleep feeling happy to live where I do while learning to live with MS. To sum it up for you, a few years of world-wide research and questionnaires were used to form the stats found in this atlas. The atlas breaks down many aspects of MS (globally!) from age of diagnosis, to home benefits, to driving regulations, to alternative treatments, to existence of government drug funding...and more!
Here are some of what shocked me:
Can a person with MS lose their job because he/she has MS...the answer is NO in only a handful of countries (Canada, Australia, Paraguay)...the answer is YES in more (United States, Finland, Russian Federation).
Mean age of onset (in 1997): Canada 24.5, United States and United Kingdom 32.5, China 30.8, Italy 25
Percent of eligible people with MS who receive disease modifying treatment: Canada 75%, Russian Federation 50%, Australia 80%, Pakistan 90%, United States no data provided.
These numbers (and the hundreds more in the atlas) do beg for further information. Maybe if I read further into it, I would answer my questions. But when I finished reading approximately one dozen of the stats, I was happy to be in Canada.
Okay - that's enough for now. My brain is tired.
Emily
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Little bits about my life with MS
