I'm getting bored with myself and my recitation of the events of my days.
What's paramount in my mind atm, is making a potentially life-altering decision.
I've known it was coming. I started anticipating it four years ago.
I'll recap quickly if I haven't lost you already.
On Aug 19, 1998, after months of declining health for no apparent reason, I was diagnosed with heart failure. My ejection fraction--a measurement of how well your heart pumps, was 10%, and heart transplantation--if I lived--was a real possibility, as there is no cure for what I have (idiopathic cardiomyopathy). Though I shouldn't get annoyed, most people I've met and talk to about this think that heart transplant is a good thing. Wrong. It's bad, very bad. What's the longest you've heard of a transplant patient living after the transplant? Five, 10 years? Yeah, "No" on the heart transplant until there are no other options.
Medication can help alleviate symptoms and over time (years) my prescriptions have made me medically stable, hovering around the cut-off range of official heart failure. Yes, this is a good thing--better than I was supposed to expect. As an aside, I've since found out that though guardedly optimistic when discussing this with me --the cardio docs thought things were pretty grim in my first year or two. And maybe things are grim and I'm in denial, but if you dwell on the bad, it doesn't leave much time for the good.
Exercise and dietary changes and a boatload of meds have me feeling better than I have since getting ill. Do I feel normal? Hell, I don't even remember what normal felt like. I know I pee about 20 times a day due to the diuretics--and consequently my bladder is shot, and I sleep really funny and my breath catches when I climb the stairs from the basement or bend over at the waist. I get dizzy sometimes but have always managed to grab onto something or someone to steady myself. And I tire easily and it's a profound kind of tired--unlike lack of sleep tired (which makes things b-a-d).
I think too, that I sustained some mild brain damage when I almost died six years ago. There was so little blood being pumped that my lungs were shutting down, and since this went on for months, I think my theory is quite possible. The meds have potentially dozens of side effects--so that may be affecting my memory, too. I can't ever know 'cos I can't ever go off the meds.
So my life abruptly changed--I couldn't do much of anything the first few years.
I applied for Social Security Disability and got it. As I understood it, if it looked to them like you could recover, they'd review your case in a year or two--a little less hope, then at three years and if they thought you were a permanent lost cause, you'd get reviewed on your seventh year. I just passed the six year mark of collecting SSD and have now received a big fat packet of forms to fill out and mail back, so the gov't can decide how deserving I am.
This vexes me because I'm not sure what I'm "supposed" to be doing.
Actually, that's not quite right. I think I'm supposed to be taking care of my loved ones and myself and living life the best way I can.
So the question is, within the very narrow parameters of what the govt defines as disabled, am I disabled?
I have very mixed feelings about reapplying. Not having to work full-time gives me the luxury of having time to get regular cardiovascular exercise, have a hobby or two that I really enjoy, and volunteer for a few hours here and there with my son's school and choir, as well as the charity store.
I suppose if I gave all that up I could handle an "official" part-time job.
The last one I had was substitute teaching at the local Jr. high school. I would put in a day subbing and though I found it immensely enjoyable (prior to choosing counseling as my profession, I seriously pondered teaching), life ground to a halt after each time I put in a day's work as I needed two days to rest up after each day I worked.
As my life is now, I can pace myself so I don't get very run down and I know I feel healthier because of it.
Ugh.
I really don't like this govt judgment of my life. The questions are horribly intrusive and a doctor's certification is impossible to get because they won't commit to anything more than stating my diagnosis--due to fear of litigation. So it's up to me to do this--all on my own and I'm feeling very resistant. I just went through the humiliating experience of having a doctor's office twice telephone about a pending appt where I was to receive my flu shot and have them tell me I "didn't qualify" as a recipient. But my heart failure cardio guy insists I get one 'cos I'm a heart failure patient. Ohhh, they said, so sorry, yes, yes, come in and get shot.
Bleh. I took some old person's shot. I'm probably damned.
In other news...
Call me paranoid
How sick are you?
You are living your life as you should, Cyn, with time wisely spent on your health, your family, your quality of life. I would fill out the forms and vigorously pursue a continuation of your benefits. And the sooner the better. It's always a relief just to get those damn forms off your desk!
Whatever you do, I wish you well.
Posted by: Jack | October 20, 2004 at 09:35 PM