Two weeks and counting

I've been off the 'roids for almost two weeks. I've worked out a couple times since then. Would have worked out more, but as usual, my back decided to remind me that I still have to deal with it every now and again. It didn't totally go out. Just felt like somebody punched me in the back.

I figured I must really have MS because after the first time I worked out, I wasn't exhausted, but I did fall asleep watching TV. Closed my eyes and all of a sudden it was an hour later. The rest of the symptoms . . . while not as good as when I was on steroids, it's manageable and I can deal with it.

More to come later.

Remember, Remember

Been off the steroids for three days. So far . . . okay. Not 100% nor will ever be but I'm living with it. On my left hand, the tips of my little and ring finger get a little tingly and my right hand while not as bad as it was still has the swollen feeling, but so far hit hasn't gotten stiff like before. Legs and everything are better than they were and are actually manageable. I'm walking faster, my balance is better. I actually wore shoes that weren't running shoes. Although, long socks was still like sliding on razor blades and after a while, the shoes were like walking on hot glass shards.

Steroids do wonders but 25 days on limited sleep and super appetite leave a lot to be desired. Thursday was the last tablet. Friday night I didn't crash, Saturday on the other hand . . . I think I was asleep longer than I was awake. It took me 12 hours to do 3 loads of laundry. Two naps that went over two hours plus a decent nights sleep and then going to bed early.

All in all, I feel better than have since September. The sad part is that I guess this is probably as good as it's ever going to get. People say do be so pessimistic, but I'm just being pragmatic. You can't change the damage that's already been.

As if it was going to be a suprise

As always, thanks for the person that responded in support of Tysabri. usually, I research the heck of something before typing out loud about what I'm thinking. It was a week moment. So, again, thanks for the information.

Last week was the marathon week that started off on such a lovely note. In home care called and arranged for a time for the nurse to come for my infusion: 3:30 to 4:30. At 2;30, nurse calls and says I need directions. Then the oh crap thought hits. She might be on her way. And she was and by the time I got there at 3:20, she was ticked. Not my fault.

Took two sticks to get the line in. Then the fun began. Solumedrol is such a wonderful thing. Instant help. Of course, when there's enough prednisone to jump start a car. . . As usual, most people at work forgot that I had this once before, so the questions started. By now word had spread about the MS, but most people still don't know. Standard response: It's just a cath tube for an IV.

Thursday: MRI. Another catch. Insurance companies in their infinite wisdom over business practices vs health chose not to authorize contrast in the MRI. Instead of 3 to 4 hours inside, I did 90 minutes. "Your doctor will fight it out with the insurance company and we'll get you back in here." "Probably Monday on your results." Damned if they didn't call on Friday after business hours were over and I missed the call.

Called today at 10:00. The results: As if it was going to be a surprise. Lesions on C2 and C3 have shrunk and you have a new lesion on T6. You don't have to have the follow up contrast, keep up with the steroids and your injections, keep your appointment and call if anything changes.

Had to tell the parents, since they kind of suspected something since I wasn't working at the other job as much as I should. Instant worry. Instant regrets.

Stay tuned.

Yes, It's been a while

First off, as always, thanks for the response to my last post, I believe.

I'm not a number counter by any means. It was only meant to put a bottom line on something. But thanks for the haiku.

I adopted a couple of cats right before Christmas. They are 9 months old now and brother and sister. They are Maine Coon mixes. Maine Coons are pretty much a dog in a cats body. Take the best traits of both and there you go. Pure breeds can get large. A not fat cat male can get close to 20 pounds. They can get huge manes, have tufted ears and furry paws. It's nice having something to come home to and something to take care of besides myself.

Last time I signed off with that my fingers were getting all tingly. Things got worse after that. I had a cold which took me three weeks to get over versus two weeks that it took everyone else. After that, I don't really know if it was a stomach virus or something else, but well, you get the idea. It could have been just me talking myself into puking. I had dinner and with every bite I just felt more and more bloated. For the rest of the night it was "I would feel better if I just threw up." Since I felt like crap and I don't willing puke on my own, I decided to go to bed and sleep through it and by morning it would be better. Every time I woke up, it wasn't any better. Finally, by three in the morning, what little I had in my stomach came up.

That's when things changed.

The myelitis had gradually came back not quite to the level where it was at it's worst, but close. Since MS is thought to be auto-immune and auto-immune by definition is your immune system gone into overload, I could have had a virus and what happened next could have been an exacerbation.

My legs are horrible. Just intense tingling and just the tightest feeling I have ever known. Just imagine a rubber band pulled to its breaking point. Just standing for any length of time is pins and needs. Knees and ankles . . . I look like a puppy that's going to grow up to be a big dog. Small legs but big feet just flailing all over the place. The thing with my hands went away and with this came back. My left hand went tingly at the fingertips and worked it's way down. My right hand, something entirely different. If felt like it would if you slapped something really hard. It would itch to no end. So bad that I had to put on a cotton glove so I wouldn't scratch it bloody.

Friday I had my check up with my neurologist. Like a previous post I had, they are the most depressing things when things are going bad. You have to spill your guts about how your body is deteriorating and there's really nothing that can be done except steroids to lessen the inflammation.

The outcome: The prednisone by tablet doesn't seem to really work for you so lets do the Solumedrol followed by a prednisone taper. Since I was due for an MRI, lets do cranium, cervical, and thoracic. Also, we might start thinking about changing meds. Tysabri in the extreme but probably Copaxone since it's every day instead of three times a week for Rebif. Oh, the down side of Tysabri was that it was pulled off the marked after there were three deaths in Europe. The FDA pulled it in the US before anything happened. It's thought that the deaths were caused by dual treatment so it was placed back on the market.

Starting Monday, I'll have a new catheter and an IV bag a day ending on Friday, followed by 20 days of tablets. Thursday I get to sit in the MRI drum for 4 hours since they are doing all three areas at once and since it's with contrast, I get to come home and then do an IV bag. But no biggie, I'm on steroids, I'll be wired for the next month. With the remaining question: Will it do any good?

Sometimes I don't know whether I want to shout or cry. Most of the time I just keep on keeping on.

The year in review

This is how much shooting up becomes a normal part of your life: I started shooting up a year ago last week and didn't even remember. It's been 156 injections, 13 boxes of syringes, and if I didn't have insurance, around $29,000 just for the shots, five months of knocking myself out to make sure I slept through the aches, chills, and pounding headaches, two months of steroids, 5 days of an IV bag, 3 hours in the MRI machine.

Where am I know? Probably worse off than before. Add a new sensation of the tips of my fingers getting all tingly. What fun. Everyone should join in it. Everything I read and the word on the street is that it's an individuals disease: nobody is the same. One of the underlying symptoms that everyone seems to have though is bouts of tiredness. I can say I've never had it. Sure, I've needed naps from to little sleep, but never from exercise or just living life.

Is all this the MS or is it the myelitis.

I let somebody shoot me up this weekend. She's studying to be a nurse, so a little practical experience wouldn't hurt. It was leg day so no matter what she did it wouldn't hurt to bad. She was a little enthusiastic with the insertion. Since there's very little fatty tissue on my legs, she got it a little more in the muscle than I usually do. No big deal. Just felt like I got punched. I would recommend that we all let somebody inject us. I don't have a problem injecting myself, but when someone else does it, it doesn't quite hurt as bad. With drug trials for pill form, injections will be a thing of the past. Not for a few years though: FDA approval and then the insurance company covering it.

Always a happy thought. Our well being is contingent on whether or not somebody else will sign off on it.

Empty and Black

Since someone was kind enough to respond to a post, I'll answer that first. The basic gist was that this person knew four people that have MS that had mono at an early age and wanted to know if I did. The answer to that is no. It is an interesting statistic though. If there is any correlation, it's not surprising. Autoimmune diseases are ones that put the immune system into overdrive and start causing the body to attack itself. Anything can trigger it or nothing can.

Yes, it's been another long silence since my last entry, but what is there really to say? One day is a mirror image of the last. I wake up, I have to get slowly out of bed or else I'll fall right over. My ankles and knees are so stiff that I look like Frankenstein's monster walking. I go to work and sit in my little cube a shadow of who I used to be. Oh, the flippant remark makes its presence known every now and again, but the quip a second person is missing. It's hard to be what you once were or even attempt to be that person when it's a struggle. Sitting to long makes things stiff again. I come home and and plant me butt down. Every day I tell myself that I need to work out. I need to make myself work out. Then despondency sets in: What good will it do? I can't do cardio without turning into a board. It sucks and I hate this.

I'm lumping in the myelitis and the MS because right now they are one in the same. Obviously when somebody is first diagnosed with something, they read as much as they can about it. It's only natural. I came across one article that was hard to believe at the time and then other articles just affirm what I already know.

MS is an internal disease. There's no outward sighs even though the effects can be seen as a result. When you say you are exhausted it doesn't look like it from the outside. When you say your legs hurt more than normal, nobody can see it. If somebody knows you really well, they can tell by the look on your face with every step you take. But who really pays any attention?

The other thing was how people react to you when you tell them that you have an incurable disease. Reactions can run the gambit: an over-abundance of attention, ignoring the fact entirely and treating you as normal, to total isolation.

I've seen it all. My close friends treat me normally but work around the bad days and put up with it. They let me do what I can and keep an eye on me. Parents treat me like parents: every little thing is monumental. Others ignore it completely and say things could always be worse or look at this person and see what they are going through. Others run screaming. Others give the appearance of concern, but you know they are just putting forth the facade that mean well. Selfish or Selfless.

Birches

Birches

WHEN I see birches bend to left and right

Across the line of straighter darker trees,

I like to think some boy's been swinging them.

But swinging doesn't bend them down to stay.

Ice-storms do that. Often you must have seen them

Loaded with ice a sunny winter morning

After a rain. They click upon themselves

As the breeze rises, and turn many-colored

As the stir cracks and crazes their enamel.

Soon the sun's warmth makes them shed crystal shells

Shattering and avalanching on the snow-crust—

Such heaps of broken glass to sweep away

You'd think the inner dome of heaven had fallen.

They are dragged to the withered bracken by the load,

And they seem not to break; though once they are bowed

So low for long, they never right themselves:

You may see their trunks arching in the woods

Years afterwards, trailing their leaves on the ground

Like girls on hands and knees that throw their hair

Before them over their heads to dry in the sun.

But I was going to say when Truth broke in

With all her matter-of-fact about the ice-storm

(Now am I free to be poetical?)

I should prefer to have some boy bend them

As he went out and in to fetch the cows—

Some boy too far from town to learn baseball,

Whose only play was what he found himself,

Summer or winter, and could play alone.

One by one he subdued his father's trees

By riding them down over and over again

Until he took the stiffness out of them,

And not one but hung limp, not one was left

For him to conquer. He learned all there was

To learn about not launching out too soon

And so not carrying the tree away

Clear to the ground. He always kept his poise

To the top branches, climbing carefully

With the same pains you use to fill a cup

Up to the brim, and even above the brim.

Then he flung outward, feet first, with a swish,

Kicking his way down through the air to the ground.


So was I once myself a swinger of birches;

And so I dream of going back to be.

It's when I'm weary of considerations,

And life is too much like a pathless wood

Where your face burns and tickles with the cobwebs

Broken across it, and one eye is weeping

From a twig's having lashed across it open.

I'd like to get away from earth awhile

And then come back to it and begin over.

May no fate wilfully misunderstand me

And half grant what I wish and snatch me away

Not to return. Earth's the right place for love:

I don't know where it's likely to go better.

I'd like to go by climbing a birch tree,

And climb black branches up a snow-white trunk

Toward heaven, till the tree could bear no more,

But dipped its top and set me down again.

That would be good both going and coming back.

One could do worse than be a swinger of birches.

-Robert Frost