A good friend of mine had a baby shower this weekend, and I made the hourlong trip back to where I lived until a few months ago to attend. Truth is, I wouldn't have missed it for the world. I've felt bad about not being there for her, I know she's had a tough time, very tired. It's kind of ironic really, because I declined a lot after I moved, so we've both been sitting around being tired and not feeling well, and I keep thinking if we didn't have those 50 miles in between, at least we could keep each other company! Even more ironic, because she was my favorite girlfriend to go out with, on the occasions when I could manage it. Together, we almost guaranteed a good time for each other, and anyone we came across or who came along. Now, she can't drink, and despite the norm being that a drink or two seemed to relax and numb my muscles, ease the fatigue, and make me not care if I was a tactless ditz, making me feel normal if only for just a few hours, I can't seem to tolerate it either now!
Anyhow, I got there late, thankfully that wasn't a big issue. But I only managed to stay for two hours, an hour and a half in I was completely exhausted, having trouble breathing (something that seems to happen when I get tired, along with my back hurting up where my lungs are, don't know why that is) then I said my goodbyes (fog, pain, & fatigue ensuring that I left out a couple, I hate that!) and went to lie down in the car for a bit before heading home. Let me tell you, I was SO grateful for my car's cruise control! (And the great traffic! Or rather, lack thereof!)
On the way home, I felt happy and nostalgic at seeing my friends.
But by today though, I just felt sad, and lonely.
Sometimes, I can't feel that life is passing me by, watching my friends and family go on with theirs. I feel a little bit stranded out here, and lost.
Things have been tougher than I thought since I moved. At the time, my main concern was having a roof over my head, and a place to live in peace.
But there are still so many things to worry about.
I feel like I've tried so hard to find a new balance, a new path in my life, but nothing ever seems to work, at least not yet; I find nothing but brick walls. I'm afraid I've become incredibly disorganized, and despite my best efforts, I can't seem to get it together, or find the path to regain financial security and control of my life again.
I'm no longer have the cloud over my head about how I'll come up with the rent, but by the time I'd found the solution to that, I'd already just about driven myself into the ground yet again. After the move, I started having big setbacks. Foot sensitivity causing pain so bad I couldn't be on my feet more than 10 minutes without provoking it. Everything just seemed to unravel from there. Apart from not being to do much of anything, I started having the weird autonomic nervous system symptoms again, heart palpitations & weirdness, orthostatic hypotension, and then my allergies worsened, days on end with sinus pain, worsening my fog, and then when I'd just about got that under control, asthma attacks that left me trying not to panic and struggling to breathe for days at a time. Kind of put a kink in my plans to make a new life in my new city. Increasing doses of Neurontin and new shoes got the footpain under control, but I have new pains sprouting left and right...Some new stuff too, that I think might be nerve pain, a weird tingly tightness in my muscles, my chest, my arms, shoulders. It's not quite pain, but it's maddening nonetheless. And my stamina...It's been a tough pill to swallow, how easily I tire these days.
I've found myself struggling for acceptance AGAIN. I seem to go through the steps of grieving over and over again, and never quite finish them. I've found myself wondering if it's because before, I was struggling so hard to act as normal and make people believe I was as normal as possible, live up to their expectations of an attractive, smart, 20something. But the fact is, my life is anything but normal, and I keep finding myself trying to accept this. That's a huge struggle: letting go of wondering what other people must think of me, and accepting that I am doing the best I can, and that those "other" people have no idea what I struggle against each day from the second I get out of bed, and that that's not my problem. My job is making ME happy. So here's to that!
Showing posts with label Life Disrupted. Show all posts
Showing posts with label Life Disrupted. Show all posts
Sunday, November 9, 2008
Thursday, October 30, 2008
Healthcare: Is it as Important an Issue to Voters as it Should Be?
I was very happy to read this blog by Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, and even more happy to read the statistics she she cited about the importance of the healthcare issue to women voters:
I am lucky enough to have insurance right now, though it could be better. (I have to pay a $2,000 deductible to get any physical therapy, which I'm needing more and more lately.) But I will never forget how two years ago, when I lost my last "real" job, I was sick in bed at my parents house for weeks, fighting bizzare symptoms, mostly bed-bound because even standing up from a sitting position made me almost pass out, and fighting a deep depression at the idea of losing yet another job to my illness, and I forgot to pay my health insurance premium.
It was a COBRA plan, and they were more than happy to be rid of me, so they wouldn't take the payment, even a couple of days late.
So here I was, in a major crisis, having very frightening symptoms (like a pounding heart that actually kept me awake all night, not to mention the other of what I know to be POTS symptoms, but I couldn't go to the doctor. My only choice was the County ER, and that is hell in itself, feeling like that, I couldn't fathom sitting around for 12-16 hours waiting to be seen. Plus, at places like that, when they can't understand what your symptoms are right away, as long as you aren't obviously about to have a heart attack or turning blue, or actually passing out, they send you right back out to the waiting area.
When I saw the documentary Sicko, by Michael Moore, I was astonished at the types of healthcare available in other countries. Canada, Cuba, England, France... I so wanted to move to France after seeing that!
I will never forget watching the part where the British Doctor tells Michael Moore how he actually gets paid incentives for getting people into preventative care programs, getting them to stop smoking or lose weight, lower their blood pressure. Imagine!
And France...imagine living in a place where if your doctor determines you can't work, the government takes their word for it. Here, the Social Security Disability Judges are out to PROVE you can work, no matter what your doctors say. You think, Judges, okay, impartial, right? But umm...they're getting paid by the government to basically deny all but the most cut and dry cases. And Fibro and CFS, are far from cut and dry...so while health insurance companies recognize their validity if using it to deny insurance to someone, they won't always cover treatments because it's easy to debate a new treatment for something for which the cause is not known, and can be brushed off as not serious. And the government readily works the same angle.
Here, the Social Security Disability administration will deny you for not having enough evidence, despite the fact that you can't afford to see a doctor steadily. But isn't that why you're applying for Social Security Disability? Because you can't work, and need MediCare, to get your case better documented and maybe, if you're lucky, under control enough to get healthy enough to get back to work? (And even though I'm lucky enough to have insurance, I haven't always been able to afford my co-pays, or pay the things it doesn't cover. I was lucky enough to get credit from a great chiropractor, the only doctor that made me better a couple years back when I was having those crazy issues with my heart and all that...I saw him 2-3 times a week for months...but the SSA doesn't give any weight to that, because he's not a MEDICAL doctor. Although they legally tell you they will take it into consideration.)
Sicko does a great job of illustrating how all these travesties are going on here in our beloved U.S.A., where most people believe a sick person couldn't possibly become homeless because all their options run out. I was lucky. I had family to turn to at the last minute, when all hope was gone and I'd exhausted all my resources, recourses, and much of the little bit of health I had. I shudder to think how many people out there aren't...
So go rent Sicko if you want to learn more, and here's the link to Laurie Edward's blog for more on the importance of the issue of healthcare.
Laurie Edwards, A Chronic Dose
Her book is awesome, too by the way! Just finishing it up. Very helpful and real, great tips on relationships w/chronic illness, getting through school, and trying to find a career that will work for you. There's a link to the book on the sidebar to your right. She is one wise chicky!
"...the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.
The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues."
I am lucky enough to have insurance right now, though it could be better. (I have to pay a $2,000 deductible to get any physical therapy, which I'm needing more and more lately.) But I will never forget how two years ago, when I lost my last "real" job, I was sick in bed at my parents house for weeks, fighting bizzare symptoms, mostly bed-bound because even standing up from a sitting position made me almost pass out, and fighting a deep depression at the idea of losing yet another job to my illness, and I forgot to pay my health insurance premium.
It was a COBRA plan, and they were more than happy to be rid of me, so they wouldn't take the payment, even a couple of days late.
So here I was, in a major crisis, having very frightening symptoms (like a pounding heart that actually kept me awake all night, not to mention the other of what I know to be POTS symptoms, but I couldn't go to the doctor. My only choice was the County ER, and that is hell in itself, feeling like that, I couldn't fathom sitting around for 12-16 hours waiting to be seen. Plus, at places like that, when they can't understand what your symptoms are right away, as long as you aren't obviously about to have a heart attack or turning blue, or actually passing out, they send you right back out to the waiting area.
When I saw the documentary Sicko, by Michael Moore, I was astonished at the types of healthcare available in other countries. Canada, Cuba, England, France... I so wanted to move to France after seeing that!
I will never forget watching the part where the British Doctor tells Michael Moore how he actually gets paid incentives for getting people into preventative care programs, getting them to stop smoking or lose weight, lower their blood pressure. Imagine!
And France...imagine living in a place where if your doctor determines you can't work, the government takes their word for it. Here, the Social Security Disability Judges are out to PROVE you can work, no matter what your doctors say. You think, Judges, okay, impartial, right? But umm...they're getting paid by the government to basically deny all but the most cut and dry cases. And Fibro and CFS, are far from cut and dry...so while health insurance companies recognize their validity if using it to deny insurance to someone, they won't always cover treatments because it's easy to debate a new treatment for something for which the cause is not known, and can be brushed off as not serious. And the government readily works the same angle.
Here, the Social Security Disability administration will deny you for not having enough evidence, despite the fact that you can't afford to see a doctor steadily. But isn't that why you're applying for Social Security Disability? Because you can't work, and need MediCare, to get your case better documented and maybe, if you're lucky, under control enough to get healthy enough to get back to work? (And even though I'm lucky enough to have insurance, I haven't always been able to afford my co-pays, or pay the things it doesn't cover. I was lucky enough to get credit from a great chiropractor, the only doctor that made me better a couple years back when I was having those crazy issues with my heart and all that...I saw him 2-3 times a week for months...but the SSA doesn't give any weight to that, because he's not a MEDICAL doctor. Although they legally tell you they will take it into consideration.)
Sicko does a great job of illustrating how all these travesties are going on here in our beloved U.S.A., where most people believe a sick person couldn't possibly become homeless because all their options run out. I was lucky. I had family to turn to at the last minute, when all hope was gone and I'd exhausted all my resources, recourses, and much of the little bit of health I had. I shudder to think how many people out there aren't...
So go rent Sicko if you want to learn more, and here's the link to Laurie Edward's blog for more on the importance of the issue of healthcare.
Laurie Edwards, A Chronic Dose
Her book is awesome, too by the way! Just finishing it up. Very helpful and real, great tips on relationships w/chronic illness, getting through school, and trying to find a career that will work for you. There's a link to the book on the sidebar to your right. She is one wise chicky!
Subscribe to:
Posts (Atom)