This exacerbation is not going away any time soon.
A dull ache from ear to ear at the back of my head was the little birdie who told me so.
In early July I will see the neuro, but I don't know if I should wait that long. After all, Solumedrol therapy is unpleasant this time of year, but the summer is shot anyhow.
Time to seek intermediate financial help, too. If I'm lucky, that is. Maybe a stopgap loan? I don't know.
There goes the 401K.
pb
Little Pond
Saturday, May 22, 2010
Tuesday, May 18, 2010
A new process begins...
So.
I've finally accepted that I cannot work like this. My neuro has sent the word to my family doctor that he recommends indefinite disability status. My gut is so nervous about the future that I feel awful every day. Multiple Sclerosis symptoms are now pretty constant: two different ringtones in my ears, along with very poor hearing in the left; numbness and dysaesthesia in both legs to the thighs and no real balance to speak of; clumsy numbness in both hands and my face; visual acuity comes and goes. On top of that, asthma is taking its usual toll this time of year.
I'm a terrible driver and use the car as little as possible. My home is sort of a part-time prison, only I have no energy to fix it up. Tidying and sweeping takes most of my energy every day.
I won't go into detail about the incontinence, except to affirm that self-catheterization is a wonderful thing. That's only half of that story.
The bills are currently being paid by my employer's insurance, but that will come to a halt in a few weeks.
Today I go online to prepare for a meeting with Social Security. The information and documents are all collected, and I've been dreading the meeting tomorrow for over a week. Husband RJ wants to come along, but I see no reason for it, except that I am chronically fatigued. As often as that leaves me feeling faint, I haven't fainted since the February Solumedrol infusion. I refuse to be a fainting Victorian lady; I don't even own a corset, not even a cute, sexy one.
The bills must be paid at all costs. Literally.
This time "all costs" cannot include working, as I have since my diagnosis fifteen years ago.
Pretty pickle, isn't it?
pb
Little Pond
I've finally accepted that I cannot work like this. My neuro has sent the word to my family doctor that he recommends indefinite disability status. My gut is so nervous about the future that I feel awful every day. Multiple Sclerosis symptoms are now pretty constant: two different ringtones in my ears, along with very poor hearing in the left; numbness and dysaesthesia in both legs to the thighs and no real balance to speak of; clumsy numbness in both hands and my face; visual acuity comes and goes. On top of that, asthma is taking its usual toll this time of year.
I'm a terrible driver and use the car as little as possible. My home is sort of a part-time prison, only I have no energy to fix it up. Tidying and sweeping takes most of my energy every day.
I won't go into detail about the incontinence, except to affirm that self-catheterization is a wonderful thing. That's only half of that story.
The bills are currently being paid by my employer's insurance, but that will come to a halt in a few weeks.
Today I go online to prepare for a meeting with Social Security. The information and documents are all collected, and I've been dreading the meeting tomorrow for over a week. Husband RJ wants to come along, but I see no reason for it, except that I am chronically fatigued. As often as that leaves me feeling faint, I haven't fainted since the February Solumedrol infusion. I refuse to be a fainting Victorian lady; I don't even own a corset, not even a cute, sexy one.
The bills must be paid at all costs. Literally.
This time "all costs" cannot include working, as I have since my diagnosis fifteen years ago.
Pretty pickle, isn't it?
pb
Little Pond
Tuesday, May 04, 2010
Attitude Adjustment
I just got off the phone with my mother in the next state. She told me that I will need time to adjust to my situation: Time to get all the paperwork through. Time to work out all the financial details. Time to adjust to being disabled and home.
And finally, time to learn how to live with the man I married.
Yep. Poor Husband RJ is now sort of an opponent. He's always in the bathroom when I need to go. He takes up too much room in the bed. He hogs the computer. His smoking bothers my asthma. All the gardening, indoors and out, keeps the floors in a constant mess.
The poor guy can no longer manage to mow the yard in one go. The mower messes with the hearing in my MS-damaged hearing. All the time now, since he takes it in little batches.
And this should sound familiar to fellow MSers: every day is a battle over the climate control. He likes it too hot in the winter and too cold in the summer.
For me, that is. The air conditioning kicks up neuralgia spots in my head and neck. Even with the compromise of 73 degrees max and 71 minimum, the blowing is annoying both to my hearing and the neuralgia. It was a tad easier in the winter, because I would bundle up or strip down. I sort of do that in the summer, too.
Now I treasure the times he's at work.
And feel guilty about that, too.
pb
Little Pond
And finally, time to learn how to live with the man I married.
Yep. Poor Husband RJ is now sort of an opponent. He's always in the bathroom when I need to go. He takes up too much room in the bed. He hogs the computer. His smoking bothers my asthma. All the gardening, indoors and out, keeps the floors in a constant mess.
The poor guy can no longer manage to mow the yard in one go. The mower messes with the hearing in my MS-damaged hearing. All the time now, since he takes it in little batches.
And this should sound familiar to fellow MSers: every day is a battle over the climate control. He likes it too hot in the winter and too cold in the summer.
For me, that is. The air conditioning kicks up neuralgia spots in my head and neck. Even with the compromise of 73 degrees max and 71 minimum, the blowing is annoying both to my hearing and the neuralgia. It was a tad easier in the winter, because I would bundle up or strip down. I sort of do that in the summer, too.
Now I treasure the times he's at work.
And feel guilty about that, too.
pb
Little Pond
Saturday, May 01, 2010
Fifteen years ago.
March 1995. I began to notice a strange feeling in my left foot, around the toes. They felt pinched, or wet or something.
I was working in an audiovisual company on the East side of town in a largely unheated building. I bundled up a little more, glad that I worked nights in a more comfortable place. The Black Monday crash of the 80's had ruined my career as an editor, so I was working two part time jobs.
May 1995. We were pasteup artists goofing around with the Exacto knives. I forget what made me think of it, but I asked my coworker to stab me in the leg. She very cautiously did so, and shortly announced that she had drawn blood. At the same time, my sight was deteriorating, to the point where I could not discern the difference between a raw, unsharpened photo and its properly processed counterpart.
My general practitioner tested my reactions with a pin. He looked serious and was uncharacteristically quiet. I was sent to the hospital for a neurological exam. During that exam, done with electrodes and all the fixings, the neuro announced that I was being sent to another hospital for an MRI. I knew about MRI's from my work with educational audiovisuals.
Half a day later I was flat on my back in the hospital, having my first Solumedrol Drip. A very relieved neuro told me I did not have Guillein-Barre, but I did have Multiple Sclerosis. Years later I would remember that a college buddy had something that made her walk stiffly and feel constantly tired.
Memorial Day weekend 1995 was spent in the hospital. I insisted on returning to work in five days. The neuro was astounded, but I had to return to my night job, because they were considering me for a full time, benefited position. I needed the money and the benefits.
Fifteen years ago this month, I began my journey with Multiple Sclerosis. This year I am fighting to regain normalcy, but it doesn't look good. It has been over two months since the Solumedrol drip, and I am only partly recovered. Never before have I been on a long term disability.
What a difference fifteen years makes.
pb
Little Pond.
I was working in an audiovisual company on the East side of town in a largely unheated building. I bundled up a little more, glad that I worked nights in a more comfortable place. The Black Monday crash of the 80's had ruined my career as an editor, so I was working two part time jobs.
May 1995. We were pasteup artists goofing around with the Exacto knives. I forget what made me think of it, but I asked my coworker to stab me in the leg. She very cautiously did so, and shortly announced that she had drawn blood. At the same time, my sight was deteriorating, to the point where I could not discern the difference between a raw, unsharpened photo and its properly processed counterpart.
My general practitioner tested my reactions with a pin. He looked serious and was uncharacteristically quiet. I was sent to the hospital for a neurological exam. During that exam, done with electrodes and all the fixings, the neuro announced that I was being sent to another hospital for an MRI. I knew about MRI's from my work with educational audiovisuals.
Half a day later I was flat on my back in the hospital, having my first Solumedrol Drip. A very relieved neuro told me I did not have Guillein-Barre, but I did have Multiple Sclerosis. Years later I would remember that a college buddy had something that made her walk stiffly and feel constantly tired.
Memorial Day weekend 1995 was spent in the hospital. I insisted on returning to work in five days. The neuro was astounded, but I had to return to my night job, because they were considering me for a full time, benefited position. I needed the money and the benefits.
Fifteen years ago this month, I began my journey with Multiple Sclerosis. This year I am fighting to regain normalcy, but it doesn't look good. It has been over two months since the Solumedrol drip, and I am only partly recovered. Never before have I been on a long term disability.
What a difference fifteen years makes.
pb
Little Pond.
Sunday, April 25, 2010
Another brother down.
Please visit Little Pond today and follow the links in the top two posts. We need to support those who care for us when we get beyond medical help.
pb
Little Pond
pb
Little Pond
Wednesday, April 14, 2010
Rinse and repeat
Wow. It's deja vue all over again, as they say. Monday I finished the latest round of doctors' visits and MRI--this time with a complete spinal scan.
As a matter of course I went to the neuro's to inquire if paperwork went out to Aetna for the temporary disability time. At the moment I am required to return to work Monday, April 18.
Not feeling great, but really, I went right back to work after the first attack, some fifteen years ago. Perhaps the intervening years have taken their toll on my ability to bounce back.
As has already happened twice before, the office reacted with shock when I announce that I was going back to work on Monday. Voiced the same indignation over the insurance company wanting further documentation. And, of course, had not sent in any of the papers that I had filled and given to them to send along to Aetna.
Just like the last time. If I were feeling just a tad better, I would return to work on Monday and tell the neuro (and his office) to screw himself. I'm tired of playing my own disability caseworker.
Although I must admit, I'm becoming a pretty good one. Lots of practice, you know.
Maybe I should consider a change of careers.
pb
Little Pond
As a matter of course I went to the neuro's to inquire if paperwork went out to Aetna for the temporary disability time. At the moment I am required to return to work Monday, April 18.
Not feeling great, but really, I went right back to work after the first attack, some fifteen years ago. Perhaps the intervening years have taken their toll on my ability to bounce back.
As has already happened twice before, the office reacted with shock when I announce that I was going back to work on Monday. Voiced the same indignation over the insurance company wanting further documentation. And, of course, had not sent in any of the papers that I had filled and given to them to send along to Aetna.
Just like the last time. If I were feeling just a tad better, I would return to work on Monday and tell the neuro (and his office) to screw himself. I'm tired of playing my own disability caseworker.
Although I must admit, I'm becoming a pretty good one. Lots of practice, you know.
Maybe I should consider a change of careers.
pb
Little Pond
Wednesday, April 07, 2010
A working-over?
So now I have been poked, prodded, stuck, and a few things I can't describe in any sort of good taste. In fact, who knew all the places they can tack-on electrodes?
At this point, I have healed from the bruising left after the three Solumedrol infusions. And I have gotten over the rashes left by the tapes used to secure various medically-invasive implements. The worst one being the goop used to secure and maintain the connection needed for the electrodes attached to my scalp. Again: who knew?
And lets not forget the ringing in the ears. Two different tones, apparently one for each side. It wasn't there, I don't think, before all this frigging loveliness.
Ahem. Some of the adhesive left only a minor spot or two that healed in just a day or so, but the electrode in the hair, well, that is still a sore/hot spot in my scalp. Sort of like those hot spots fleas leave on a dog.
Without going into the nasty details, I am only left with a Urinary Tract Infection, caused by the tubing used to pump me full of sterile water. Of course, I have a mild UTI almost all the time, anyway, from self-catheterizing, but the laboratories caught this one. Now I am on Amoxicillin for the next ten days.
Last, but certainly not least, is the after effects of the MRI: an entirely new one now scheduled for next week.
We are now officially keeping the Arnot Ogden Medical Center in business, single-handedly. The bills for the copays, etc, are piling up.
pb
Little Pond
At this point, I have healed from the bruising left after the three Solumedrol infusions. And I have gotten over the rashes left by the tapes used to secure various medically-invasive implements. The worst one being the goop used to secure and maintain the connection needed for the electrodes attached to my scalp. Again: who knew?
And lets not forget the ringing in the ears. Two different tones, apparently one for each side. It wasn't there, I don't think, before all this frigging loveliness.
Ahem. Some of the adhesive left only a minor spot or two that healed in just a day or so, but the electrode in the hair, well, that is still a sore/hot spot in my scalp. Sort of like those hot spots fleas leave on a dog.
Without going into the nasty details, I am only left with a Urinary Tract Infection, caused by the tubing used to pump me full of sterile water. Of course, I have a mild UTI almost all the time, anyway, from self-catheterizing, but the laboratories caught this one. Now I am on Amoxicillin for the next ten days.
Last, but certainly not least, is the after effects of the MRI: an entirely new one now scheduled for next week.
We are now officially keeping the Arnot Ogden Medical Center in business, single-handedly. The bills for the copays, etc, are piling up.
pb
Little Pond
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