Author: sean

This week is supposed to be about raising awareness of multiple sclerosis.

I really hate that euphemism, “raising awareness.” Is anyone really not aware of cancer? It’s quite possibly going to kill you, eventually. Yes, you are going to die, and chances are it’ll be cancer or cardiovascular disease.

Is anyone really not aware of male pattern baldness? Maybe I give the common man too much credit; I refuse to assume he’s a complete idiot. Makes me a bad nanny-state politician.

The tens of you who read this may or may not be aware that a) there is a condition called multiple sclerosis, and b) I have it.

You would not know I have it just by looking at me. One of the most common things that people say to me, upon hearing that I have it is the dreaded, “you look so good!” At first glance, if you don’t see my often present cane, I do look better physically than I did not terribly long ago. Although I’ve lost some hair, and have more wrinkles, I’m a lot skinnier than I was not terribly long ago.

I probably weigh about what I did when I graduated high school. How many other folks in their mid-thirties can say that? Otherwise, it’s visually tough to tell I’m afflicted — unless you can see my bruised elbows. In addition to the scar I have on my right elbow from a childhood baseball incident (batting left-handed, and took a pitch right to the elbow), I often have bruises on my elbows from various collisions with things in everyday life. I thought about this as I got the shower wall in the other morning..

This article touches on many of them. I’ll run through the ones that affect me the most, then go try to go back to sleep.

Pain
I’m trying to remember the last day when I didn’t have some sort of physical pain, and honestly, cannot. When I was younger, it was largely attributable to overexertion, and poor dental care. Both of those were partially my own damn fault. I worked out too hard. I didn’t go get those wisdom teeth pulled when I should have, etc..

Towards the end of college, I started having the odd body aches nearly every day. I attributed it to living in perpetual jetlag; for years, I lived in both day and night worlds. Student or entrepreneur during the day, radio news guy at night. In 2005, I signed on with a company that allowed me to leave much of that lifestyle behind. but I still ran too hard out of habit.

Fatigue and Sleep Issues
See above. I think the last time I would have been on a somewhat-normal sleep cycle would have been early in college. From about age nineteen to 25, I pretty much existed on various stimulants (caffeine, nicotine, etc.). Four hours of sleep here, two hours there, a 30 minute catnap, etc..

The concept of going to sleep at 2200, and waking at 0600 was completely foreign to me. In many ways, it still is, because I really have trouble sleeping more than a few hours at a time. Even after a few hours’ sleep, I’m not “rested.”

Since diagnosis, I’ve not gotten better with that. The last two years’ employment drama haven’t helped. Right now, I often struggle through a full workday, go back to my mom’s house where I’m staying during the workweek, sleep for a couple of hours, wake up, have dinner, talk to my wife, and try to sleep again until it’s time to head in to the office in the morning. Not fun..

I’ve tried backing off on the stimulants and depressants, but it hasn’t helped all that much.. I’m tired nearly all the time, and that makes my vision worse.

Vision Problems
I have them big time since around the time I was diagnosed. My vision has gotten worse. The last time I went to an opthamologist, I was at about 20/50 combined, corrected. I was correctable to 20/60 in my right eye, and not correctable better than 20/2000 in my left eye. (For reference, not correctable better than 20/200 combined is legally blind.)

My visual decline has been ongoing, but really accelerated the last few years. I don’t see well enough to feel safe to drive a car. I miss lots of things. Reading the ticker on the TV? Yeah, good luck with that. Failing to recognize someone I’ve known for a long time? Guilty.A sensation like I’ve just had a camera flash me all the time? Got that, too.

I could rattle on for pages about my various maladies, but you’d never be able to see them for yourselves. So, how do I raise your awareness? I can’t. All I can do is tell you my story, my situation, and hope you’ll believe me. I know when I was younger, I probably wouldn’t have believed me, because I couldn’t experience these things, myself. And, of course, I look so good! *sigh*

This week is supposed to be about raising awareness of multiple sclerosis.
I really hate that euphemism, “raising awareness.” Is anyone really not aware of cancer? It’s quite possibly going to kill you, eventually. Yes, you are going to die, and chances are it’ll be cancer or cardiovascular disease.
Is anyone really not aware of male pattern baldness? Maybe I give the common man too much credit; I refuse to assume he’s a complete idiot. Makes me a bad nanny-state politician.
The tens of you who read this may or may not be aware that a) there is a condition called multiple sclerosis, and b) I have it.
You would not know I have it just by looking at me. One of the most common things that people say to me, upon hearing that I have it is the dreaded, “you look so good!” At first glance, if you don’t see my often present cane, I do look better physically than I did not terribly long ago. Although I’ve lost some hair, and have more wrinkles, I’m a lot skinnier than I was not terribly long ago.
I probably weigh about what I did when I graduated high school. How many other folks in their mid-thirties can say that? Otherwise, it’s visually tough to tell I’m afflicted — unless you can see my bruised elbows. In addition to the scar I have on my right elbow from a childhood baseball incident (batting left-handed, and took a pitch right to the elbow), I often have bruises on my elbows from various collisions with things in everyday life. I thought about this as I got the shower wall in the other morning..
This article touches on many of them. I’ll run through the ones that affect me the most, then go try to go back to sleep.
Pain
I’m trying to remember the last day when I didn’t have some sort of physical pain, and honestly, cannot. When I was younger, it was largely attributable to overexertion, and poor dental care. Both of those were partially my own damn fault. I worked out too hard. I didn’t go get those wisdom teeth pulled when I should have, etc..
Towards the end of college, I started having the odd body aches nearly every day. I attributed it to living in perpetual jetlag; for years, I lived in both day and night worlds. Student or entrepreneur during the day, radio news guy at night. In 2005, I signed on with a company that allowed me to leave much of that lifestyle behind. but I still ran too hard out of habit.
Fatigue and Sleep Issues
See above. I think the last time I would have been on a somewhat-normal sleep cycle would have been early in college. From about age nineteen to 25, I pretty much existed on various stimulants (caffeine, nicotine, etc.). Four hours of sleep here, two hours there, a 30 minute catnap, etc..
The concept of going to sleep at 2200, and waking at 0600 was completely foreign to me. In many ways, it still is, because I really have trouble sleeping more than a few hours at a time. Even after a few hours’ sleep, I’m not “rested.”
Since diagnosis, I’ve not gotten better with that. The last two years’ employment drama haven’t helped. Right now, I often struggle through a full workday, go back to my mom’s house where I’m staying during the workweek, sleep for a couple of hours, wake up, have dinner, talk to my wife, and try to sleep again until it’s time to head in to the office in the morning. Not fun..
I’ve tried backing off on the stimulants and depressants, but it hasn’t helped all that much.. I’m tired nearly all the time, and that makes my vision worse.
Vision Problems
I have them big time since around the time I was diagnosed. My vision has gotten worse. The last time I went to an opthamologist, I was at about 20/50 combined, corrected. I was correctable to 20/60 in my right eye, and not correctable better than 20/2000 in my left eye. (For reference, not correctable better than 20/200 combined is legally blind.)
My visual decline has been ongoing, but really accelerated the last few years. I don’t see well enough to feel safe to drive a car. I miss lots of things. Reading the ticker on the TV? Yeah, good luck with that. Failing to recognize someone I’ve known for a long time? Guilty.A sensation like I’ve just had a camera flash me all the time? Got that, too.
I could rattle on for pages about my various maladies, but you’d never be able to see them for yourselves. So, how do I raise your awareness? I can’t. All I can do is tell you my story, my situation, and hope you’ll believe me. I know when I was younger, I probably wouldn’t have believed me, because I couldn’t experience these things, myself. And, of course, I look so good! *sigh*

I’ve basically not worked this week.

I’m having some issues related to my condition that have been tough. Since May 2013, I’d been taking Tecfidera. No real concern, though, as my neurologist was thinking about switching me to one of the infusion medications.

Last fall, I didn’t enroll in my company’s HMO offerings for a variety of reasons. Naturally, just after the open enrollment period, we received notice our private policy wouldn’t be offered for 2015. Somewhat reluctantly, my wife and I chose a plan offered on the Federal Exchange with a company we’d previously used (and had difficulties with).

We went with the plan largely because we knew that the specialists I’d been seeing accepted it.

My wife saw her PCP last week on the new insurance without any problems.

This week, I had two appointments with specialists scheduled. One of them was with the neurologist who’d been treating my MS since just after diagnosis, the other with a specialist I’d been seeing on referral from the neurologist (albeit, this time to address a problem discovered in a routine test as my PCP; since there was an existing relationship, I figured I’d let them handle it). Friday, tomorrow, I had an appointment scheduled with my neurologist to discuss changes in my treatment.

I saw specialist two late last year. He wanted to run some tests, but agreed it’d probably be better to wait until my new policy started.

Early in the week, I got a call from the second specialist saying they didn’t have my insurance information. Since I didn’t have my card on me at the moment (I’d given it to my wife when she went to pick up a prescription for me), I told the caller the company, and that I’d bring my card with my for my appointment on Wednesday.

So, yesterday we set out to my appointment. After someone rudely cut in front of us, we finally got to the check-in. Hand over my card. Paraphrasing —
“Did you get this from the Exchange?”
“Yes. The woman I spoke to said that you accept this company.”
“We do, but not the plans from the exchange.”

After a bit of back-and-forth about the cost of the appointment as an out-of-network patient, we left.

My wife reminded me that I should call my neurologist, with whom I had an appointment scheduled Friday. They don’t accept the exchange program, either.

Later that afternoon, while looking for replacement specialists on the insurer’s site, I found a doctor at my neurologist’s practice listed. Again, paraphrasing —

“Which doctor?”
“Dr. S.K.”
“Please hold….” “Sir, we don’t accept that insurance at all.”

So, cancel that appointment, too, and see the PCP Friday to get referrals to new specialists.

Meanwhile, I can’t work, and none of my conditions is being treated.

A big “thank you” to the politicians responsible for this.