The Secret of My MS

Just riding the wave. . .

2010-06-05T17:44:00.002-06:00

No earth shattering news to report. Things remain on the status quo.

Yesterday, I was having a dead foot. I can always tell when one day is a little worse than the others by how I walk. Sometimes, after I push off, my foot just decides it's going to drop. Mostly I just end up dragging my toe, but yesterday, I almost did a gainer. I saved it, so no falling but ESPN plays of the week it was not.

I decided to put laminate flooring in one of the rooms of my house. 60 square feet. Under normal circumstances, it probably should have only taken a couple of hours to lay it down. Given that the MS affects mostly my legs, it took twice that. I emptied out the room, cleaned the bare floor and laid down about half before my legs started to fail me. After a 30 minute break, I was ready to go, did a couple more rows and needed another break. After I finally finished, there wasn't enough strength in my legs to take everything back in and it wasn't a lot. After a couple hours, I was able to move everything back in.

One unforeseen circumstance is that all the sawing and hammering freaked my scaredy cat cat. The front half of the house is carpet and the back half is tile and now laminate. Their food and litter box is in the back half. After all that, she wouldn't get off the carpet and has been totally frightened of everything in the house. It's been a slow progression of getting her back to the back of the house. My male Maine Coon was totally unaffected by it all and as typical of Maine Coons offered his "help" by laying where ever I needed to be. He seems to love the floor because he runs full tilt and then does a 180 spin. Crazy cats.

I saw an article on a dietary supplement called Prevagen. It contains some protein harvested from jellyfish called aequorin. It's supposed to slow the progression of aging of brain cells and help memory and cognitive function. It also has some affect on neurological diseases. Always leery of naturalist medicine, I took to the Internet for some research. Bottom line, it doesn't do crap for memory, but there may be some benefit for neurological diseases. So I thought I would try it. After a couple days, it seemed that the tingles I had throughout my legs was a little less. Or it could be psychosomatic. Regardless, there was a difference. It probably doesn't really work, but I though I would try it for a couple months and see.

Ooops, forgot to write

2010-04-27T17:46:00.002-06:00

I kept meaning to write, but alas, I kept forgetting to. It's not like there was anything to really update however.

I had a check-up in March and my worries about a relapse turned false. I was just really tired from a back-to-back cold. Chest cold that turned into a head cold. Two weeks of fighting of a cold took it out of me. As apposed to last year wear I had a cold every other week. That was because of the Rebif and being on it for over a year. The check-up went fine. I finally sucked up my pride and asked for a doctor's note so I could wear running shoes to work instead of somewhat dress shoes for business casual. Since I had those two relapses one right after the other over a year ago, anything other than athletic shoes feels like I'm wearing barbed wire. But working for a corporation means that nobody can make a decision no matter how mundane it is without CYA. If I didn't have to work to have health insurance I would have quit a while ago.

I took a week off work to recharge the batteries since it was desperately needed. I packed up the HUMMER and went to Louisiana. Nine hour driving trip sucks under the best of circumstances. Nine hour trip on two hours of sleep. . . Stupid MS and those middle of the night bathroom calls. I woke up with that urgent need and couldn't get back to sleep after that, so three in the morning, I left. Nine hour drive is long, nine hour drive with a six pound cat on you lap for most of the trip kills the legs. It was all worth it because that night we ordered 60 pounds of crayfish. They were so good, my lips were still number from the spices four hours after I got done eating.

Not much else happened since then. I did wake up this morning with hardly any tingles in my legs and feet and there was barely any spasticity in my legs. It lasted for most of the day. It was good feeling, albeit short lived.

Winter Sucks

2010-02-20T21:29:00.002-06:00

The title says it all.

Being a Summer child, winter always blows. The great thing about volleyball is that the tournaments start amping up in January and end in April. Usually by March though, I was ready to hit the sand. But it got me through. Then there was snowboarding, but I didn't do a lot of it since I moved back from college. Maybe once or twice a season. Now though . . . I still haven't adapted to this new life.

I still have that feeling that every day I work is a day wasted. After a while, they all blend together. I've been working since I was 13 and have never really liked to work. It's not that I'm lazy, it's just that my time is my own. Working for family inflates that belief. I was working, but it was still essentially for myself. The fact that I was transplanted in to "Office Space" certainly helps to exaggerate everything.

Not much to report on the symptoms front. I still haven't decided if I've relapsed or not. I woke up in the middle of the night with the itch that can't be scratched, but it could have just been that I was sleeping on my left arm. Who knows. Being twilight sleep, you can tell yourself anything and make it out to be true.

I was glad to see that the FDA approved a drug that helps walking. As usual, the side affects suck. But it comes down to a quality of life issue. Most days I can walk just fine so I doubt that there would be any reason for me to go on it yet. There's no price to it yet since that's really up to the insurance companies, but wholesale price is about $1,100 a month. Throw in any of the CRAB treatments and it's $40,000+ a year.

Isn't modern medicine just marvelous.

I'm Still Alive

2010-01-22T17:51:00.002-06:00

Yes, I know I haven't written in quite some time. The truth is, I really haven't had anything to write about. No news is good news.

The shots are pretty much the same. I occasionally am late with one. Not to often though.

The muscle spacticity is pretty much the same. Some days are worse than others.

Bladder . . . Well, we can all attest to that. Most of the time, it's a sprint to the bathroom only to have the sensation go away by the time I get there. Then it's a ten minute . . .

I thought I might have had a relapse a few weeks ago. If it was, it was the smallest ever. I couldn't really tell, but the tip of my little finger on my left hand felt tingly. Whenever something happens we automatically think MS.

Still have that same feeling that I am wasting my life away having to work. Some days it's not so much, other's days it's WTF?

I've lost 10 pounds just by eating a little better. I'm sure if I want to get back into my Hugo Boss skinny jeans, I'm going to have to get off my ass and work out again.

I still try and shoot at least once a week. That thrill of being good at something again just didn't come. I had to work to get good at volleyball and then I had to work to stay good at it. After a certain point it's just embroidery. Shooting is the some way. Once I got used to my pistol I was putting the shots in the X Ring and 9 ring. All qualifying rounds. I could shoot more and get a tighter cluster but . . .

In economics there is a theory called Economies of Scale. Basically, it's producing more for less. I compare the Economies of Scale of volleyball to shooting. For an indoor volleyball tourney, $13 for the entrance fee, $20 for food during the tourney and then another $20-$30 afterwards for dinner and alcohol. At the most $63 for 12 hours on a good day.

Shooting: Box of 50 9mm target rounds: $15 or so. Give or take a dollar here and there depending on brand and load. $2 for targets. I usually expend about 120 rounds in about 45 minutes. Have to let the barrel cool off. Grand total about $40 for less than an hour. Olympic target shooter I have no desire to be.

I go back to my neuro on March. Since the last area that was MRI'ed wasn't where I had the relapse, I'm sure I'm due for another when I go back.

No news is good news.

Didn't Realize it had been so long

2009-10-09T18:10:00.002-06:00

No news is good news as the saying goes.

I guess after a time, one gets used to the pain of the injections or something. Whatever it is, either I'm used to the pain or they just don't hurt any longer.

I really haven't been doing much of anything. I was going to start working out again after Labor Day, but then I was going down to Louisiana the last week of September. So why start working out when was just going to have to take a week off. Which would have turned to two weeks off. But more on that later. I know it's pure procrastination.

I did manage to drive the nine hours to my parents. With two cats. Without any problems. The cats were a bit mouthy for an hour or so and then settled down. Into the smallest space they could find. When we got there, Logan was easy to get out. Sadie crawled under the drivers seat, dug her claws into the carpet and wedged herself around one of the horizontal supports. Took 20 minutes to get her out. Coming back though, placed towels underneath the seats. Take that.

I managed to drink for four consecutive days with my parents neighbors who are younger than me. Doesn't matter though, we fight right in. As to be expected, the MS questions always arise. Although, I was slightly surprised at my dad's reaction about me having the option to go on Tysabri. The death rate wasn't that big a deal. Maybe it was positive thinking, maybe not.

Since I haven't been able to play volleyball for really almost a year and half since my relapse last
September pretty much ended that hope, I've been just lost. When you do something competitive for over half your life and suddenly it's gone, there's a huge part missing. I loved that I was good at something and excelled at it. I loved the competition almost as much. My mom and dad joined a gun club. It is Louisiana after all. I haven't shot pistol since I was a kid and it was never paper targets. Always an empty can in the middle of a dirt road out in the middle of no where. I had always shot air pistol and rifle at home. Get a trap and fire away.

I forgot how much fun it is. I've been thinking about buying a handgun for a while and my state does have conceal/carry. Just to see how I would do on the shooting test, I moved the target the 21 feet down range and would have qualified easily. Not that 21 feet is a great distance. Then, I moved the target as far as it would go and started doing double taps. Wider disbursement but not bad. When I got home, I unloaded truck, dropped the kitties off and when to my truck dealer and bought a Beretta 92. I've wanted this pistol since I had it as an air pistol. Haven't shot it yet, but soon.

I think I have found something to replace the volleyball. It takes skill to be able to hold a gun steady and put a round right where you want it. It's something that I can take pride in just as much as I took pride at volleyball.

Not Big on a Title

2009-08-21T23:35:00.004-06:00

I had my follow up visit Friday with the Neuro. As I stated previously, my hand was getting better. Now, it's about 80% - 90% back to normal. Like all things MS, it changes on a day to day basis. If it had gotten much worse, I was afraid that I would have to start signing my name with an "X".

Last week wasn't really rough, but the spastic muscles in my legs were showing themselves greatly and my feet just burned. When I had my follow up, I had my gait check to see if I needed anything to help with the spastic muscles. But, alas, I guess it wasn't bad enough yet. I am mostly drug free except for the Copaxone. It's been about 6 months since I first started on it, so it's getting ready to move outside that window. Hopefully it works because I'm staying on it for the time being. I suppose if I really wanted to go on Tysabri I could. I checked out the web site and read what people wrote on WebMD. Like al MS drugs, it's great if it works for you, if not, you're probably no better off than before. Granted the chances of death are probably over blown, but because there is a probability there's a possibility.

I had one of those "deep" conversations this weekend. I have always been one of those people who get enjoyment out of anything: going to the art museum, sitting by a lake and reading a book or just doing nothing. A friend of mine lost their dad a couple years ago. While it is the natural order of things, when it happens suddenly, it leads to some introspection. You begin to realize your own mortality. For a majority of your life, mom and dad were always there and suddenly one of them isn't. "Am I living life to the fullest?" Robert Frost called it taking the road less traveled: " Two roads diverged in a wood, and I—I took the one less traveled by, And that has made all the difference."

I have never wanted to work, even though I have been doing it since I was thirteen. I have never wanted to work for a corporation. Where am I? Working and working for a corporation. I can go into the reasons why, and I believe I have done so previously. If I didn't, just watch "Office Space." Everybody has a Milton and some useless, ginormeous tool hack of a boss, some slacker that gets promoted. 'Nough said?

I think part of my so dour mood for the last few months is that the whole purpose of working has changed. It's something I go to every day for the insurance. Instead of living the life that I want to live: stop and smelling the roses, I'm working for the man. If somebody says MS is taking the road less traveled, I'll punch them in the nose.

I work 5 days a week, sometimes 6 and sometimes 7. By the weekend, I'm so tired that going out and doing those things just doesn't seem appealing as compared to planting my butt on the couch and maybe taking a nap. Damn the man.

And Now For The News . . .

2009-07-31T20:42:00.002-06:00

I had my MRI Monday on my C-spine. I know that the technicians are supposed to be pleasant and helpful and trying to put the patient at ease but one would assume that when said person asks said patient "Oh, it looks like you have had a few MRI's . . ." with a response of "Four in two years" we could dispense with the BS. I don't need the walk through, I don't need you to ask about how I am doing, just get going and get it over with. Especially when the thing is only going to last 45 minutes.

Got the call about the results the next morning. No new scar tissue on my neck and the two spots on my C2 and C3 have shrunk even more since my last scan in February. Good news but WTF is up with my hand? Unless there's scarring some place else.

Strange of all strange, as soon as the call was over, my hand got getter. Not 100% better, but certainly noticeable.

Ho Hum

2009-07-21T14:53:00.002-06:00

I had my periodic check up with my neurologist today. For some reason, I was just very anxious about it. Probably because I had a relapse so soon after starting a new medication. She had a new resident with her today, so I had a little more attention than normal. Which is fine. It doesn't really bother me. My hyper-reflexes in my legs weren't so hyper this time. Some of my other reflexes were spread: Tap my bicep and my fingers twitch. I had to close my eyes and touch my nose. I got the side of it with my right hand and got the tip with my left. After the once through it came time to discuss what to do.

I have another MRI scheduled for Monday. When it comes to MS, the first assumption with any new symptom is that it's MS. My hand could be carpal tunnel, but is probably another relapse. We're going to hold off on another round of steroids for right now and see if my hand will clear up on it's own. The doctor finally came to the conclusion that the mega-doses of steroids in tablet form really don't do anything for me. If it doesn't get better in a month, we'll do another round of IV's followed by a taper.

No doctor likes to continually change medications to see what works. So Tysabri is back on the table. According the doctor, I am an excellent candidate for it. Am I an excellent candidate for PML as well? There is always that question: "What if?"

What if I don't go on Tysabri?

What if I do go on Tysabri?

These are the heavy questions that I left the office with. Needless to say, my dower mood from before hasn't really changed. It's a good thing I get my hair colored or else my grey hair would really be showing.

Happy Birthday to Me

2009-07-12T18:13:00.002-06:00

Last Friday was my birthday. My body gave me a present of my very own. For a few days prior, my hand would tingle a little and then go away. Not that it was completely out of the norm. Then finally, it stayed and progressively got worse. Just transfer the way my legs and feet feel and transfer it to my right hand. The tips of my fingers are the worst, my knuckles are stiff and the rest of my hand just feels swollen. I have my next check up with my neurologist tuesday week.

I think this is the lowest I've felt since first getting diagnosed.

So Much For The Summer

2009-06-20T16:23:00.002-06:00

For most of last summer, it was business as usual: I played volleyball, I ran, I enjoyed the outside. This past week, Saint Louis have been under a heat warning and will be into at least the middle of next week with temps in the mid to upper 90's and humidity pushing the heat index to over 100.

Conventional wisdom is that hot weather and MS don't mix. No kidding. I certainly found that out with spending 10 minutes outside. Left leg went all spastic and my right hand went numb. Hello air conditioning.

Nothing really new to report. I had a great bruise on my left leg about the size of my hand from the shots. If I would have thought about it, I could have taken a picture to share with the class.

Pardon the Interruption

2009-06-12T23:21:00.002-06:00

I don't mean to interrupt this prolonged silence, but I thought I'd better write before people thought I was dead.

It's been almost three months since my last post. I haven't really been motivated to do much of anything. The little that I was working out passed by the wayside. Cardio is hard to do when you can't really do what you need to. Work has been so busy lately that by the end of the day, I can't wait to get home and chill.

The injections are going as advertised. Nice bump for about an hour followed by a nice red splotch for a few days. The places where I do have fat doesn't itch much. The injections into the muscle itch crazily. The closest I can compare it to is chicken pox. It itches, but scratch it and it itches like crazy. Injections into the muscle hurt.

Anything physical, I usually pay the price for the next day. Last weekend I probably have done the most in a long time. I helped a friend do some construction on the playground for his kids and then played some volleyball after. The next day I did some more manual labor. I had a two hour nap in the afternoon and was asleep for the night by 10:00.

The helpline from Shared Solutions calls every month. Which is fine, but utterly pointless. There's not a lot that they can say that hasn't already been said. "Do you rotate your injection sites? Are you going shallow or deep with the injections? Do you use the auto-injector or do it manually? Do you heat the area before and ice it down after? Are you missing injections?" The list could go own, but again, utterly pointless.

My lack of motivation has become a driving force and it sucks, but for right now I just don't care.

Holy crap Batman that hurt

2009-03-26T17:07:00.002-06:00

The last two weeks have been much of the same. I can't seem to find the time to work out as much as I would like or need to. I make it in on the weekends. Monday's are out because of all those people that fail to work out over the weekend try and make up for it on Monday. Since I work in a germ factory of an office, Tuesday's are my allergy days. By the afternoon's my head is pounding, nose stuffed up, eye's watery and itchy. By the time Wednesday comes around the motivation to work out during the week evaporated. My parents were in town half of last week and half of this week.

Amazingly, there was a seamless transition on my injection meds. The people from Shared Solutions called me five days after my appointment, said they would send an informational packet and told me to call in a few days if I hadn't heard anything on a delivery. In the meantime, even though I said I didn't need a nurse to come out for the show and tell session, they were sending one anyway. I called back a few days later and they said they faxed off the prescription to my specialty pharmacy and I should call them that day. Called the pharmacy and it was ready to go and would be delivered on a Tuesday, my Rebif ran out on Wednesday and the nurse came today.

You have to hand it to the drug companies. They have more promo items to give away. I got a mesh back, a water bottle, hand sanitizer, hand cream, sun glass case, chap stick with holder, sun screen, magnetic picture frame, combination ice/hot pack and of course the obligatory pens. In this case three. Of course they all have Copaxone on them.

The nurse spent about twenty minutes here. In the end she said she felt pretty useless. Most of the people she's sees are newly diagnosed so they need the whole song and dance. After the question and answer session came the moment of truth. Since I have to shoot up every day, I can't really pick and choose where I stick myself, I started with the back of the arm. While the steroids have put 20 points on me since I took the first dose 18 months ago, like most men, it's mostly on my waist. The rest of me is rock hard muscle.

I used the auto-injector simply because it's easier. Not a lot of fat to pinch so . . . deep breath let it out, since she told me it burns just like Rebif, pull the trigger and . . . hey . . . that didn't burn. A minute or so later, it felt like somebody gave me a good pinch, a couple minutes after that it felt like somebody punched me with a knuckle sticking out. Four hours later, it's almost stopped hurting.

So . . . HOLY CRAP BATMAN, THAT HURT.

Tomorrow . . . we'll try my hip or stomach.

Updated News

2009-03-12T15:09:00.002-06:00

Good job ManU in the 2-0 win over Inter and Ronaldo scored a goal in a big game. Shut up critics.

I had my "check up" with the neurologist today. She was pleasantly surprised that the steroids helped as much as they did. I still have some spacicity in my legs but nothing compared to two to months ago. Back then just image pulling a rubber band as tight as possible and trying to do something with it.

I've been searching for the proper phrase and I think it's irony. Her concern is that my exacerbation's are on my spinal cord rather than other places in my CNS. Is there any good spot to have an exacerbation? Anyway there were two small spots on my T6 that would explain the symptoms for this last go around. Given that fact that's where the myelitis is/was: no kidding those are consistent symptoms.

We are changing meds though: Copaxone. Thankfully, I won't have to go through the months of flu like symptoms and will have to worry site reactions and shooting up every day. We did talk about some of the new meds on the horizon. As usual with anything in the states it takes forever for the FDA to give approval so right now looks like 18 months minimum before it gets to market.

There's a couple oral drugs but nothing particular on if its in conjunction with another drug or taken singly. There's a drug that will help with walking that can be taken in conjunction with other meds. Another infusion that's taken once a year that is supposed to reduce exacerbation's by 80%. Nothing definitive on that yet.

I go back in 4 months unless something changes.

Awareness

2009-03-09T19:27:00.003-06:00

Last week was National Awareness Week. Refer to last years post for my thoughts.

I'm working out a little bit more and more. It's still taxing on my energy though. I can fight through most of it. Sometimes. I had to work at my dad's on Saturday and it sucked me dry. Had to take a nap. I was okay the next day. Maybe my endurance is growing.

I have my follow up appointment this coming Thursday. Refer to another entry for my thoughts on these delightful visits.

But such is the life that we lead.

On to a lighter note : Go ManU beat Inter.

Two weeks and counting

2009-02-25T17:55:00.002-06:00

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

2009-02-15T21:35:00.002-06:00

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

2009-01-26T19:18:00.004-06:00

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

2009-01-17T19:43:00.002-06:00

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

2008-12-08T22:07:00.002-06:00

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

2008-11-22T21:03:00.002-06:00

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

2008-11-02T18:58:00.004-06:00

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

Another Long While

2008-11-01T21:44:00.002-06:00

Just like the title says it's been a while. Not much has changed. . . things suck. I still have the tingles, the tightness, all that other stuff. So . . . is it the myelitis or is it the MS? Part of me says the myelitis but the other part says MS. Not that it's an impossibility, but it just seems strange that I would get an exacerbation in the same spot that if have inflammation from the myelitis. It's not as bad as when I first went to the neurologist, but it's close.

I'm just in a down turn. My motivation to do anything is non-existent. I haven't been working out. I always go through cycles but it's just been harder this time to get back into it.

It's been a while since I've done a "My favorite singer/band" so hears another one: Charlotte Church.

She's kinda of faded into anonymity in this country, but she's still popular in Great Britain. She started out as a wee little girl with a huge soprano voice. She's done mostly opera and classical, but she did come out with a pop album three years ago. Listening to it, one would never know it was her. She has or had her own talk show, had her fair share of run-ins with the press, but she's come through it all. She has bigger balls than some men. She's 22 now, mother to one with another on the way.

Thought for the Day

2008-10-18T21:50:00.001-06:00

``Never shall a young man,Thrown into despair
By those great honey-colored
Ramparts at your ear,
Love you for yourself alone
And not your yellow hair.''

``But I can get a hair-dye
And set such color there,
Brown, or black, or carrot
That young men in despair
May love me for myself alone
And not my yellow hair.''

``I heard an old religious man
But yesternight declare
That he had found a text to prove
That only God, my dear,
Could love you for yourself alone
And not your yellow hair.''

William Butler Yeats

When Darkness Comes

2008-10-14T19:18:00.002-06:00

It has been a while since I've written.

What's to tell since my last post that the steroids weren't working? As of Thursday it will be three weeks since I got off of them and I am probably worse than when I went on them. My brief attenpt to play volleyball ended. I had no choice but to back up. If my legs and knees are stiff and I'm all wobbly when I walk, what is the point. My pride and the memories of once was limits me. How can one devote ones self to the sport that I devoted myself to for over two and a half decades and am now just a shadow on what I used to be.

Added to my frustration is the fact that upon prescribing the steriods, the neuro said to call if they weren't working out. I called last Tuesday, asked to be put on solumedrol and another round of taper. Nurse called on Wednesday, described that the last course didn't work. I didn't hear back until Thursday. Response: You're just going to have to deal with it.

Which leads to two thoughs: Is it just the myelitis or have I presented? None of the typical symptoms of MS have ever shown up. What does one believe? What does one do? I haven't worked out in a month. I want to go back but . . . my desire to do anything is non-existent. If I don't feel like myself, If I don't feel . . . what's there to do.

Outwardly, I put up a good front, inwardly . . reluctance, depressed, frustrated.

Teneo vestri ego

2008-09-19T20:40:00.003-06:00

To know ones self. . . Just as before, the tablet steroid taper didn't work. I still have one day of two tablets and five of one. Just as before, starting about halfway into the 60 milligrams, it just came back. I should have stuck with the direct infusions for the five days and the 20 day taper.

I also played volleyball last night. The new league started that I agreed to play in way back in June. Mixed blessings. 4.0 on passing/-.500 on hitting percentage/7-to-1 on ace-to-error percentage.

Next week . . . could be entirely different.

F it all to hell.

"No news is good news; If it bleads it leads . . ."

2008-09-09T19:31:00.002-06:00

When there's nothing to report, it's boring. Go back to my recent post of people that say they don't let their disease rule their lives. With any flare up of MS, the treatment is steroids, if the flare up is bad enough. The taper packs that are given to people for skin allergies or poison ivy/oak aren't anywhere near to what I take.

Saturday, as usual my knees felt like exploding and my muscles burned. Nothing to worry about. It happened the last time. Before I ever had steroids, I was told get used to no sleep and that was from somebody on the small doses. It's no joke. I finally fell asleep about 3 in the morning and woke up at 7 and dozed for another 90 minutes. Sunday, pretty much the same thing. Monday, get ready for work which meant buying Red Bull on Sunday.

The cool thing about steroids is that even with the lack of sleep, you're still wide awake. Until you crash which usually happens every couple days. Yesterday was the crash. Now, no sleep on Tuesday or Wednesday, crash on Thursday.

As with the last time, the 80 mg work well. 60 mg starts on Thursday. Does it go back to the way it was or does it stay minimized until the next flare up that won't go away? Time will tell.

Tell me how someone can say that they don't let their disease rule or dictate their lives when they have to face three weeks of no sleep, increased appetite, increase weight?

Pass the Juice

2008-09-05T18:17:00.002-06:00

Since someone near and dear accused me of being rather lame lately on publishing my posts, how about back to back posts?

I had my six month check up with the neurologist today.These things are always a little apprehensive since you have to divulge every little bit about "How are you feeling?" The sad part of it is besides being on disease modifying drugs, there's not a damn thing they can do for you. The usual treatments for exacerbation's are steroids. Which aren't any joy either. Anybody that has done a taper pack for a skin allergy can kind of equate. People with MS and transverse myelitis get mega-doses.

Since my flare up is probably myelitis, since I don't have the usual tell-tales of an MS flare up, I get to go back on the steroids. Pass the juice, please. My mega-dose is 80 Mg's for 5 days, 60 for 5, 40 for 5, 20 for 5.

Welcome to 20 days of sleepless nights and a case of Red Bull to get me through the mornings for the next three weeks. As much as it sucks having an IV line in for 5 days, I would have rather had the Solumedrol which delivers 1 gram of prednisone in an hour and then done the taper. But I'm not the doctor. Also had a major misconception that you can't be on steroids and interferon at the same time. Evidently, you can.

I will bid everyone goodnight on my final night of a good sleep for a while and if anyone wants to call me, I'll be up. ;-)

2008-09-04T17:23:00.000-06:00

Che giova a te, cor mio, l'esser amato?
Che giova a me l'aver si caro amante?
Perche crudo destino -
Ne disunisci tu s' Amor ne stringe?

Selfless or Selfish

2008-09-01T18:57:00.000-06:00

I had been thinking about writting this for a while. Yes, it's more of philosophy from Steve. Call it a guilted and jaded view on life, but of those who know me, even though they may not agree with it, they can understand why I would say what I would say.

I tend to believe that we humans are more selfish than selfless. Does selflessness even exist any longer?

I posed this question just the other day with someone I would never have expected to have this conversation with. If someone donates $5 and they feel good about their donation doesn't that make the act one of selfishness as opposed to the person that gives $5 and doesn't care about it afterward?

Does the phrase "Doing something out of the goodness of the heart" even exist any more? Are any acts of kindness done just to do them or are the self-serving? When asked to do something do we say yes without thinking about it or do we consider the issues that lie beneath as something we can use later on.

Something to think about and comment on if one so chooses.

The roof, the roof, the roof is on fire . . . make that the feet

2008-08-27T17:33:00.002-06:00

Yes, it has been almost three week since my last post. The myelitis has really flared up. I had a flare up about a month ago, it went away and then really came back a week later. Spastic calf muscles and my feet were on fire. It got so back that I had to dispense with my normal business casual attire for work. The dress socks and shoes had to go. Nothing like that constant feeling of walking on broken glass. Out comes the no show socks and running shoes. Fortunately, dress shoes and running shoes are black so nobody noticed. This week has been a roller coaster. Some days good, some days not so good.

My foray into personal training is probably about over. As most people do, they give working out about a month and then give up when they don't see any results. Said person was told change your lifestyle or you are heading for an early grave. Fear of dying is a great motivator. At first. Then the old habits kick back in and the questions arise:

Why am I doing this?
What good is it?
If nothing is happening, why continue?

I've always been active and it wasn't until about 33 where I felt the need to work out in order to keep what I had for volleyball. There were some months were I didn't work out at all. Since I was diagnosed, there has only been a week here or there where I didn't work out. It has taken a really long time to develop and tone muscles. Always being athletic and competing on a higher level, I know it was going to take a while.

I told said person that. Don't give up on yourself, you have to make a commitment to it and after a while, it becomes a habit and then it something that you get addicted to. Fall out of it and it will be hard to get yourself back into it. Keep a positive mental attitude. After a tough week, back come the cigarettes and the rationalization. Forgotten is the thing that got it all started in the first place: Change or die.

Thought for the day.

What is time?

2008-08-07T17:47:00.002-06:00

Someone once asked Albert Einstein to define time. In the man's wisdom, he said "Time is what is says on the clock," or something to that affect.

Was it the man's intellect coming through to say there is no definition of time? It is something that just is. Time has no meaning except for what we define it as. Or is it something else?

I think we define time as those empty periods between the moments that fill our lives. When our lives are filled, time stops. Every sunrise is fresh. Something never seen before. Every little thing has meaning. The air smells wonderful and we breathe it into our toes.

Take that away and life is but a series of empty moments. The sameness rules the day. Everything is the same no matter how different. Then something comes along that changes those empty moments into full ones.

I think when someone has a disease, time takes on a different meaning. If someone says they don't let their disease rule their lives. Don't believe them. In some way, no matter how minuscule, it does.

My shots are just something I do three days a week. I don't even think about them anymore. I just know that I have to arrange my schedule or shoot up where I am. Granted, I'm supposed to shoot up about the same time every time. At this point, I'm past the side affects so timing isn't that big a deal. But, I digress . . .

Now, I measure time as good periods and bad periods. I've had a good period for quite a while. This week sucks. I am having a myelitis flare up. My left calf has been cramped since Sunday. Half my left leg is numb and tingly and the other half isn't. My feet are on fire, yet I can't really feel them.

Yet . . . I continue on. I don't let my disease rule my life. I got over the fact that the athlete that I was has died and will only be reborn if the myelitis goes away. Yet it is something that I have to face, deal with, and live with everyday.

Long time, no see . . .

2008-08-03T21:01:00.002-06:00

Yes, it's been three weeks since I've posted anything. Mostly, I've been busy and secondly, I haven't had a lot to say.

I ended my hope of a one and only stop on the "Steve's farewell volleyball tour." Maybe it was my lack of desire or that distant knowledge that once was will never be unless the myelitis goes away. I have all this knowledge in my head and yet the body that the knowledge commanded changes on a daily basis. It's not only because I am rusty, that has a lot to do with it, but there's no consistency of what my body can do from the times I play. It sucked have to pull out of the tournament, but it was the right thing to do. It wasn't fair for my doubles partner to play with me for just one more tournament. Given the way things went, maybe I should have played. But, that is in the past.

I've been busy with the house. I've cleaned the carpets and put in a speaker system for my theater. The carpets were so dirty that it took an entire day and they still aren't totally clean. The speakers took about 4 hours and mainly it was running lines. It should have been taxing at all, yet I was exhausted afterwards.

This weekend was spent working. The "not mandatory," mandatory overtime was yesterday morning and the person that ordered it wasn't there. It's called a command function, but if you tell people you oversee that there is overtime that everyone is encourage to attend and if not, it's held against you and that person doesn't show up, it's called being a hypocrite. It's such a good way to instill that warm teamwork feeling. I worked out after that and there was basically the entire day.

Today I had to work at the family's business. The deal to get my parents out of the house sooner was that I had to work. Granted, it's not in full scale production, but I still have to do it. So, another 3 hours working on the weekend. In the last two days, I've worked eight hours. The supposed weekend that's used to refuel and recharge went out the window. From now on, when there is the "not mandatory," mandatory overtime, I'm going to have plans.

Health wise, I have been fine. I'm still working out 4 days a week and throwing in some cardio as well. It's good to sweat. The shot's still hurt like hell. Sometimes it's enough to get me cussing.

That's really all I have to write for now.

Screeching Hault to the Farewell Tour

2008-07-13T18:33:00.002-06:00

Ya, I know, I haven't written in a while, it's just been really busy. The parents decided to come home a little early and it's been absolute chaos. In addition to packing up their belongings, I had to obtain a few of my own. In addition to trying to keep things where there's little disruption in life, it's a been a little stressful.

Also, I've started some personal training. I never had a problem working out by myself, but having somebody I can direct and workout with is nice.

My birthday was pretty atypical. Had dinner with friends and then home because I was pretty exhausted. For those who knew it was my birthday and didn't wish me a happy one, I'll remember that for the future.

I've played volleyball a few times in the last couple weeks. Twice in sand and once in the grass. Sand . . . sucks. As in my previous writ ting, the things that came natural aren't. It seems that my brain is short circuiting and I can't decide what I want to do. This weekend was going to be my last tournament. Honestly, it didn't matter if I played or not. My partner has run into some babysitter options and I may not be able to play. I'm not all that broken up about it.

Health wise, everything is the same. The days all run together. The shots are just something that I do every other day. I don't really think about them anymore and I don't have any side affects.

Pontification for the masses

2008-06-23T20:55:00.002-06:00

This week won't be exactly on topic and that's okay. Last week was a little rough. I played volleyball on Tuesday and Thursday. Thursday was better than Tuesday, but that person that was graceful and light on their feet is no more. I fall down like a house of bricks and can't pop up like I used to. Such is life.

I missed my shot time on Wednesday by three hours. I don't know if I paid the price for the next day or not, but I felt like crap. It was either that or my allergies or both. Friday's, as always, are the enjoyable shot days. It was in my left leg which is the worse out of the two. I think I could jab myself with a screwdriver and I wouldn't feel it.

Saturday was a sad and depressing day. I held and fed a three week old little girl. The mother . . . a child herself. "Sins of the father . . . " is just as applicable to mother's as well. The new grandmother, age 35, gave birth to her child at 18. Said child gave birth at 17. What does the future hold for this little one?

When one has an outside perspective, it's possible to see things coming a long way off. Not that I am expert in raising a child, far from it. I have coached enough children to know a problem when it exists. Only to late did the mother realize her child was on the wrong path. By that time, at age 15, she was beyond reach and help. Nobody is beyond help, but when the person to provide it is lacking in a moral compass and is just a self centered as her daughter, what help is there?

Where does everything stand now? The mother of this precious child no longer has custody. DFS has awarded custody to another relative. Sadly, the mother probably does not care. "I have been relieved of burden." The selfish always turn things around to fit themselves. This self centered child will undoubtedly change this around to fit her own purposes. "Poor me, my child was taken away . . . pity me and adore me for I am the down trodden!!"

This tiny little baby has a very uncertain future ahead of her. It is very likely that the mother was a druggie. Only time will tell if there is any permanent damage. She is active and does cry, but at three weeks who is to say if that is a good sign or not.

I feel sorry for this little girl because nobody should have to grow up in such a situation. As I said, sad and depressing.

In that theme: White Lion - When the Children Cry.

"On the dark side of the moon . . ."

2008-06-17T21:33:00.001-06:00

Such is summer . . . the time of being busy and just hanging out, spur of the moment plans and enjoying the moment.

The shots went okay last Monday and Friday. Wednesday's almost made my knees buckle it hurt so bad. Thursday, I did something I haven't done in a long time. I left work, went to the courts and played volleyball for a couple hours, went to the Y, played in a league game, went and got some dinner and then went back and played some more sand. Friday was a little rough but it was worth it.

Today, I played again and played horrible. Not that anyone else could do any better. It could be that I am just out of practice. Fundamentals are called that because they are fundamental. When I was at the top of my game, the fundamentals were things that I didn't have to think about. Feet placement: perfect; balance: perfect; court vision and court sense: perfect. Today, I had to think about all of those things before I did them.

I did show some signs of past glory. I had a one handed back set that went from zone four to nine. As usual with those sets, not only did I fake out the other team, but my team as well. Then I had an open hand dig on a driven ball.

On the home front . . . the parents put a contract down on a house today. It's everything that I hate. It's a gated community, high gabled roof, the street name is the typical manufactured, symbiotic to the name of community, the typical, cookie cutter house. It does have some character to it, but it lacks vision. A house isn't just four walls, a door and windows.

Since no artist of the week last week . . . this week we'll go with Siouxsie and the Banshee's. 'Nuff said.

The Liberation Has Begun

2008-06-08T18:49:00.002-06:00

It's been a rather busy week. My parents have begun their pre-move move. They left Friday in search of their new abode and the transfer for theirs to mine has begun. The man-cave is being renovated which began on Thursday with the delivery of my 52 inch flat screen TV and stand along with the new X-Box on Friday. Before this, I already bought the Blu-ray. One word: WOW.

Yesterday, I had a wedding to attend. The first week in June is usually one of two things: hot or moderate with the weekend just the exact opposite. Yesterday was hotter then hell. Most weddings, guys can dispense with the sport coat and just wear a tie and button down. Needless to say, I was hot. Also, I was over dressed. One guy walked into the church in a Hawaiian shirt and shorts. WTF?

I got to spend some time with two people that I haven't spent time with in a while since my life changed. Add two more people two the list that know. As always, the reactions were wide spread: Oh, that sucks, I'm sorry. The other person is a year away from graduating med school and she didn't have a lot to say other then ask how I dealt with the side affects from the interferon. Sometimes it's just nice to receive that knowing look without having to go through a lengthy explanation. Then there's always that: I have it, but I don't explanation as well.

Anyway, today I was pretty tired and it doesn't have anything to do with the MS. It was just a busy weekend and going to bed late and waking up annoyingly early didn't help. Shots this week went okay. I have a nice bruise on my stomach. Haven't had one of those in a while. If there's anything enjoyable about my injections it's Friday's. Friday's I shoot myself in the leg. Since my left one is the worse one as far as the tingles go, I hardly feel it.

I Dipped My Toe In And The Water Was Warm . . .

2008-06-01T21:19:00.002-06:00

To the masses that are reading this ;-) I haven't written in a couple weeks because there hasn't been a lot to say. The sameness of the days tends to run together and there's nothing new to report. Last weekend my allergies were out of this world. There wasn't a lot going on for the holiday weekend thankfully enough. Last week, much of the same: I worked out and I shot up.

Today, I bucked up the courage and went and played volleyball. As my previous writings revealed, it's difficult knowing how one once played versus how one plays now. They only difference between then and now is that I am just rusty. All the important things are still there, it's just the fine tuning that needs to be worked on.

Now that I've dipped my toe in and the water is fine, it's time to play again.

Artist of the week . . .

Two bands that helped to make CBGB's what it was: The Ramones and Blondie.

Less is more . . .

2008-05-19T20:53:00.002-06:00

Not a lot to write for last week. After my running hurdle that I crossed, I fell off on everything else. Due to the crazy St. Louis weather of having rain at least twice a week, my intention to work out last Tuesday was cut short by the quarter sized hail that started just I was leaving. While the Hummer is solidly built, the roof is just as flimsy as any other car. Driving on the highway in a hailstorm . . . I love my truck more than working out. Then that set the tone for the rest of the week. I wasn't as sore as I thought I was going to be after the run and that was about the only good thing of the week.

I did run again today. It wasn't as bad as last week, save for the spastic muscles in my butt and thigh. But I toughed it out.

Shots I was a big baby. Usually, I do a couple of deep breathes and pull the trigger. Last week I was running a marathon. Stomach didn't hurt so bad, butt . . . not as bad as the previous weeks (I took the shot out the day before) my leg was best of all. Since that is where most of the myelitis is centered, I hardly ever feel it.

Artist of the week . . . Not so much an artist but a genre and all it's sub-genre's.

Paul Oakenfold and when he collaborates . . . Oakenfold, DJ Rap, Iio, Amber, Basement Jaxx, Frankie Knuckles, and the list goes on and on.

Any one reading this is probably going WTF? by now. To the uninitiated it's techno. To those familiar: house, trance, trance-hop, drum and base, and the list goes on and on.

When you lived the club life, it's the music that made you move. Plus, I think it would really cool to be a DJ. Especially when it's late, most of the crowd that is only there to be seen has left, and the DJ goes freestyle.

Somebody . . . follow me in the ambulance

2008-05-12T18:35:00.003-06:00

I held off on writing anything because of what I wanted to do today. The myelitis is always more pronounced while at work. Whether is the sitting or the dress socks that I have to wear, my feet always tingle more at work than any other time. So . . . I planned on sucking up my pride, but mostly my lack of pride and I decided to run.

I don't have anything to prove to anyone other than myself.

At some point you have to get beyond telling yourself that your limited by the cards you have been given, bluff your way into going all in and just doing your best and don't muck the hand. Enough poker metaphors.

To borrow another phrase, this one from "Risky Business" "Sometimes you have to ask yourself What the F**k?"

I didn't have any expectations. How could I? I didn't set any speed records. I'm probably the fastest 35 year old that runs like a 50 year old. After about a quarter of a mile, my feet felt really heavy but I didn't have any of the coordination loss that I had when I was first diagnosed.

The next step. . . sucking up enough courage and playing indoor volleyball again. That's a much harder thing though. It's one thing to tell people you know outside of what your know for about the person you are now. It's something entirely different going back to a game that was your passion and knowing that it's never going to be the same and having to explain to people who have known you for years that the player the knew was dead and that I'm just a regular guy playing a game.

Not that I'm Michael Jordan or anything, but I would be willing to bet that he would give anything to play professional level basketball again. Knowing that he can't, playing anything below that isn't quite the same. There's always something lacking.

Anyway, last week was okay. It would have to be to make me run. One thing to take note of is the shots in my ass have really started to hurt. The first time, I thought it was because I took the shot out late, but last week hurt worse than the first. Damn it.

Artist in this case Band of the Week.

Oasis

What's there to say about a band that puts out a CD of the brother's doing nothing but arguing? Pick an album and they have awesome songs on it. "What's the Story Morning Glory" is probably the best and it was so good that it produced two separate releases of the B - Sides and some of them should have been on the original album. MTV Unplugged had some great performances and Oasis, well, Noel had one of the best performances.

Titles? Who needs them.

2008-05-04T18:48:00.002-06:00

Not much in a writing mood today. The creative juices for a pithy title aren't flowing.

Not much happened last week. No news is good news. I was sore for a couple days after my new venture into volleyball. It was a good pain though. I worked out three times during the week. I took Friday off of work and lifted heavy for my upper body on Friday. Saturday, I had the deep muscle pain. I also played volleyball again for a couple hours. I even managed to run around and sprint without the decrease co-ordination that was usually associated with the myelitis. I may even try to run sometime this week. My three shots went fine as well. I didn't have the usually morning aches on Tuesday. That's been hit and miss for the last month or so.

I also saw some people that I haven't seen in a while. They told me they did the MS Walk because of me. Flattering and I said think you, but it's always an emotional rollercoaster when I get told that. It just sends my mind swimming. On one level, I am still trying to wrap my head around all of this. What is life going to hold for me? Am I ever going to present with recognizable symptoms? What happens if and when I ever do? What damage is going to be done?

Then, the objective, logical, and cynical portion of my brain kicks in. The MS Walks and rides are supposed to raise money for research. As with all things when there's a "National" involved . . . how much of that money goes towards administration costs and how much goes for actual research. With some charity organizations, it's absurd how much goes towards administrative costs and how little gets to the people who really need it.

I'm not naive enough to believe that there will be a cure in my life. There very well may be a cure, but believing in it is probably a false hope. How many auto-immune diseases are out there that are "controlable and managable" and how many are cureable. If anything, a cure probably isn't in a drug. As with all things, it will probably start at the genetic level and changing some gene that tells the body to stop attacking itself. It's only been 10 years or so since the Human Genome Project was completed.

Music Artist of the Week: Ryan Adams

Pop, folk, country.

"Love is Hell" is probably my favorite album. It has an excellent cover of "Wonderwall" and "Avalanche" is excellent and has been in a ton of movies. For One Tree Hill fans . . . Haley and Chis Keller covered "When the Stars go Blue." I like the Ryan Adams version better.

Addendum

2008-04-28T18:12:00.002-06:00

In my haste yesterday, I forgot to add something that I wanted to start. Since music is so expressive, can capture a mood, a feeling. I thought I would do my artist of the week. So to speak. Can't say how long it will last but my tastes range far and wide.

This week . . . Leonard Cohen.

Been around for fourty years, but I think his songs are timeless. Three favorate come to mind: Hallelujah, If It Be Your Will, Everybody Knows. Hallelujah has been covered quite a bit, but Jeff Buckley certainly had the best version. It's been featured in movies and TV the last few years. Jason Castro did it this year on American Idol.

The last two were in Pump Up the Volume. Including a cover version of Everybody Knows by Concrete Blonde. Both are equally good in their own respects.

"Maybe It's Just in Your Mind" - A Working Title

2008-04-27T18:58:00.002-06:00

Today I am sore.

I know mind over matter is a big thing. Having a positive mental attitude can't keep depression away, but it can make have less of an impact. How does that apply to the physical? Is it possible for a person that is paralyzed to be able to learn to walk again? Of course it is. It happens all the time. I've known a quadraplegic game some use and motor function.

How does that all apply to myself. I've had myelitis for over a year and it's only been since last August since it got bad. Before the steroids and solumedrol any activity just made it worse. Coordination went out the window, physical prowess dropped to close to zero. I thought I was going to not be able to do anything but work out. Not entirely a bad thing, but for someone that would play soccer, tennis, and volleyball all in the same day, it's certainly a change in lifestyle.

Yesterday I played volleyball for about four hours. Two of which wasn't really serious and the other two not quit competative. Aside from a lot of rust, it wasn't bad at all. It didn't seem like I had a loss of speed or coordination or its that my body has just gotten used to what I have to deal with or both. Memory tells you how you used to play but your body forgets. Working out certainly helps, but playing volleyball for so long, my muscle memory is set in its ways.

Afterwards was a little rough. Either the numbness/tingling really makes my feet hurt because of the pounding or I need new shoes. The knees were a little tired. Today I sore, but not as sore as I thought I was going to be.

The rest of last week was just a normal as a week should have been. Three shots, one of which hurt like hell. Forgot to take it of the refrigerator, so it was only out about 15 minutes and I held in my hand for another 10. It hurt enough for me to say "OW" aloud.

Apathy . . . Ah . . . Who cares.

2008-04-19T19:03:00.002-06:00

Yes . . . It's been two weeks since I've written anything about what has been going on. Frankly, as the title suggests, I just really haven't cared to do much of anything. I haven't really worked out in a couple weeks. I changed my workout schedule and it didn't really work. There doesn't seem to be a lot of people who go to the gym that I belong to. Monday is always the busiest day. It' funny that people think going to the gym is going to fix what they did over the weekend. Anyway, I used to go Tuesday, Wednesday, Saturday and Sunday. For some reason I kept Saturday and Sunday but changed to Wednesday and Thursday.

Bad idea.

Turns out that I need to get off my ass at the beginning of the week or by the time Wednesday rolls around, I have no motivation to do anything. Last week, I wasn't really motivated to do much of anything. I had every intention of working out on Wednesday, had my truck parked out in front and then came up with every excuse why I wasn't going to go.

Pathetic.

I get easily annoyed with blatant stupidity. Understandably, certain situations are excusable. Yesterday, St. Louis was jolted with a 5.2 strength earthquake at 4:37 in the morning. Granted everyone that was aware of was woken up by it. This has been the strongest quake in about 30 years. Granted peoples memories are pretty short, but that doesn't excuse blatant stupidity.

All the earthquakes that have happened in my life, I was either on the road or asleep. This one, I think either my internal warning alarm went off or the the initial shaking woke me up. First thought was that since a rail line is close by, it was a damn heavy train. Except my bed wasn't rattling or vibrating, it was actually moving back and forth. Just to confirm, I turned off my air purifier and didn't hear a train. In typical guy fashion, if it wasn't a train, it had to be an earthquake. I rolled over and tried to go back to sleep. After about 15 seconds of shaking, it still wasn't over. So I took a pillow put it over my head in case the ceiling fell and did go back to sleep.

Of course, the only topic of conversation at work was the earthquake. Enter the dance of the stupid people. "I didn't know what it was, " "I thought it was the wind," "I thought a truck was passing by," "I didn't find out it was an earthquake until I saw the news."

It just amazes me how people don't use that gray mass of mush under their hair and have to rely on being spoon fed information. I am not the most intellectual of people when I first wake up and especially when it's a sudden wake up, but if I can put 2 & 2 together. . .

There was an MS Walk last weekend and one of the people I work with was kind enough to bring me a care package. Actually, it was what was given out to everyone that walked. Funny enough, it's all stuff from the drug company that makes Rebif, which is what I take. Included was a small backpack with Rebif on it, a bright yellow t-shirt with Rebif on it, a yellow neck cooler with Rebif on it, then pamphlets on how the drug company assists those how have trouble paying the outrageous cost of the drug.

Nothing like free advertising and nothing like advertising you or someone you know has MS. Yes, I am being cynical again.

There's really nothing new to report. The myelitis changes every day and as usual, no signs of MS.

Philosophy 201?

2008-04-07T19:40:00.004-06:00

Time for a bit of philosophy since I haven't waxed poetically in a while. Some thoughts came to me and they were those thoughts that only come late at night.

What defines us?

Is it our actions? or is what we say? or is it both.

What defines you?

A previous entry made use of the word hypocrite. Saying one thing and doing the opposite.

Actions or words?

For most of us, actions are both a public and private thing. But it's such a duplicitous thing because the same act in public can mean the complete opposite in private. Words on the other hand are just the opposite: mostly private sometimes public.

Is it words or is it actions?

Dichotomy - a division or the process of dividing into two especially mutually exclusive or contradictory groups or entities

What's the difference between public and private perception? Does it matter? What's worse: the things we do in public or our actions in private. I think that we delude ourselves with the deceptions that we create in our own lives. When we let people in, they get to know us sometimes the very perceptive know us better than ourselves. In poker, it's called a tell. We are creatures of habit, but back to the question at hand . . .

Actions or words?

I have always thought that "Actions speak louder than words" is half true. Actions: public; words: private. I think the two go hand in hand. I can talk out my ass, but unless I back it up, the words are empty. Words are important, words have meaning.

Enter Dichotomy again.

Think of the feelings evoked when someone says "I love you." How much meaning do those words carry after the the hundredth time, the two hundredth? At some point do we want those words to be backed up by actions? Does love come with a price tag? or is it just the simpleness of an act.

Let not the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds
Or bends with the remover to remove.
O no, it is an ever-fixed mark
That looks on tempests and is never shaken.

or

She walks in beauty, like the night
Of cloudless climes and starry skies;
And all that 's best of dark and bright
Meet in her aspect and her eyes . . .

Are those words that were penned 400 or 200 years ago carry any less weight than a flower given unexpectedly?

Actions or Words?

There are a ton of platitudes for actions and words. Are there any for both? I have always thought if I give my word and fail to back it up what use are my words or lack of action? If you say you are going to do something and then don't do it, how many times are people going to put their trust in you. You can only treat people like a doormat for so often before they aren't going to take it. Unfortunately, people don't like to admit their mistakes. It's always the fault of someone else," you've changed, you just don't see it."

Do we consider ourselves to be a just and moral person? Do we do what is right or do we do what is right now?

Actions or Words?

"One small step for Steve . . ."

2008-04-05T23:32:00.002-06:00

This past week has been kind of up and down. We've tried this thing at work for the last 18 months that just hasn't work. Probably with all things "corporate" and hierarchical command structures I can make a blanket statement because it probably accurate. We can all watch "Office Space" and find someone we can identify with or something.

With any problem that's "corporate" a group is organized to study the problem and come up with solutions. When that isn't working, another group is started to study the group to find out why they aren't coming up with solutions. In the meantime, another group is started to study the original problem. By this time, the original problem has grown beyond the grasps of those studying the problem and taken on a life of its own. Instead of analyzing what is going on, the powers that be decide that just solve the problem by destroying that which created the problem and coming up with an entire new way. Instead of studying this new way before putting it into action, it's the ol' jump right in method. Which creates a new set of problems which takes us back to the beginning when all these new problems crop up.

When this new system was put into place, it was evident from early on that we had to few people and to much work. Fast forward to now where two teams are fully staffed and the team that I am on is still the same five people. Now add to the mix that all overtime now has to be approved. This lead to a meeting where we were told our processes are not working and we need to change. Big F'ing surprise. I've been saying that for 18 months to know avail.

Now on to the rest of the week. Shots went good. Monday's were typical, Tuesday's achy. Surprising, Wednesday was as well. Friday, I hit a vein and the thing wouldn't stop bleeding. Mangina that I didn't want to be, put on a band aid, then mangina that I really didn't want to be had to rip it off and the multitude of leg hair came with it. Those from my past would have been proud of how many hairs they could have ripped with it. ;-)

I also touch a volleyball for the first time since August. I really had my doubts and still have them. I had been on my feet since 1:00 today. Usually, when I am on my feet for that long, the myelitis really flares up. I did manage to sit down for about 60 minutes before playing and it did help. I wasn't so worried about getting to the ball. I already know that my mobility isn't going to be what it was. Age wise, I may soon to be 36, but I'm probably 50. The thing that scares me the most is hitting. If you can't jump, what's the point of playing a sport where it's a requirement.

With any athlete, there's a double edge sword: if you leave at the top of your game, there's always the question of what might have been; if you leave on the downward spiral, you are always trying to regain what you had and that's not going to happen and people say you should have left earlier.

I know that I haven't been at the top of my game for a while. A volleyball player's prime is between 26 - 28. Looking back on it, mine was between 27 - 30. I won the most tourney's then than all the previous years added up together. I've slowly stepped away from the game and I did it on my terms until this. The sport that's in my heart has been denied to me. I think the hardest thing for an athlete is not to leave on their own terms.

I know I can still play after today, but no where near where I used to be. The question is do I discover a new me in volleyball and erase the memory of what used to be or walk away completely.

The March of Time

2008-03-31T19:02:00.002-06:00

I took last week off from doing anything. With my knee, I didn't want to work and then I woke up in such a bad mood on Monday I need to take a day off. Things being what they are when you work for the man, you have to request a day off 48 hours in advance. No big deal, I hate taking days off in the middle of the week, so Friday. Check the book and damned if someone hadn't already taken the day on my team. No day off for Steve. After a string of cuss words, I suck it up and take the next Friday off. The rest of the week sucked ass. If I could have put it on fast forward, I would have, or a few shots of tequila.

Friday comes and goes and then it's the weekend. After last Friday's fun cut short, staying out late is just about over. Which, BTW, was cut short anyway by the county cops. Saturday, I went to a birthday party for my friends one year old. Brooklyn is a miracle baby of sorts. Her due date was supposed to be my birthday, but she had to be delivered about 100 days early. Surprises of all surprises, her doctors let her go home early. With premature babies, they usually stay in until their due date. She came home the week before Memorial Day. She was all of 5 pounds.

She seems to be a healthy happy baby. When I saw her a month ago, she was a typical baby: you lay her down and she stays there. Four weeks later, if you sit her up, she won't do a face plant, she can't crawl but she can push herself backwards. Entertainment of all entertainment, she got an un-iced chocolate cake to tear apart. Chocolate cake all over the place including her face. It was good to see childlike innocence again.

Sunday I spent the day lounging.

Myelitis . . . same, MS still the same. Shots . . . Monday was okay, with the delayed flu. Wednesday okay again, with delayed flu, which was a little unusual. Friday . . . hurt like hell, no flu.

Happy Easter

2008-03-22T21:47:00.002-06:00

Not much to report this week. Myelitis was okay. No really major flare ups. I did my usual four workouts this week and I think I tore something in my knee on Thursday. "And the hits just keep on coming . . . " I don't know how much the sled weighs on the leg press, but I have been easily pressing 270 pounds of weight fairly easily. When I went on Thursday, there was already 270 on plus an additional 50. What's 50 pounds when it comes to the legs? On the third rep, a nice sharp pain behind my left knee. Took 140 pound off and kept going. Now it's just stiff and crunches every now and then. Not good.

Shots went well this week. I had a birthday party to go to last night. Throw in trivia and beer pong and it makes for a fun night. It's nice that my friends look out for me, because I got to drink one beer. Everything past that, nobody would let me drink. Shot nights and staying out late are not a good combination. About 11:00 the mild headache started and about 11:30 started the joint pain. I tried to hold on, but all I wanted to do was take some drugs and go to bed. When 12:00 came around, I had to go.

Such a drastic change from that former life I had. Stay out until 3 in the morning, go home, sleep for three hours, get up, play volleybal all day, get dinner, go home sleep for an couple hours get up and stay out until 3 in the morning again. Every Weekend.

"How the mighty have fallen"

No News is Good News

2008-03-15T21:45:00.001-06:00

Not much going on this week. My myelitis flare up continued on through till the end of the week. The neuro's office called on Tuesday and my blood test results all came back normal. Not that I was all that worried about it. Since the office I work in is a germ factory and a virus and upper respiratory bug hit almost everyone and skipped over me, I didn't think my white cell count when down.

My arm from the stick for the blood test is still a lovely shade of purple. Earlier in the week, it was just about every color of the rainbow. I worked out 4 times this week which is about what I normally do. Last Saturday was a max lift for my upper body. Which, sad to say, was what I was doing two years ago. As a result, everything was tired when I lifted again on Tuesday. But today, I had more endurance.

All in all, it was a quite week.

National MS Awareness Week

2008-03-08T23:04:00.002-06:00

Monday starts National MS Awareness Week. Enter cynicism.

Why do we need just a week? Those of us that have been diagnosed are certainly aware of it every day. Or is this a week to make people that don't have MS aware? What is being aware. Telling people that you have it, does that make them aware? Knowing someone that has it, does that make them aware? In the age of feelings, we have "Awareness" weeks, but what is the purpose?

Yesterday was my 6 month check up at the neurologist. Not much to report. I'm not going to have another round of steroids for the myelitis. I really didn't think I would, but one could always hope. It was basically another interview.

Q. How did you react to the Rebif?
A. Fine, January sucked since I started the full dose. The side affects were controlled by ibuprofen. I had some mood swings, but they went away.

Q. Notice any physical changes? Ever have days where you were exhausted for no reason?
A. Haven't notice anything really. I have energy, just lack of motivation. Winter's not my best time of year. I'm working out again after pulling a muscle in my back.

She did mention a couple things on the horizon. There could be a couple of new drugs in the next two to three years that are in pill form. Also a "new and improved" form of injectibles in the same time as well. They are starting human trials shortly. Hit the National MS web site at http://www.nationalmssociety.org/index.aspx for details.

After about 10 minutes we were done. Told me to come back in 6 months, call her if anything changes or I had questions and go to the lab and have your blood test to check you red and white blood cell count and your liver function. The nurse took two vials of blood and I left knowing I would have a nice bruise in the morning.

I woke up this morning with the worst flare up of the myelitis since the second round of steroids. It's gotten better since the day has progressed. It also brought something else to mind. If there's anyone reading this that knows, let me know.

My employer has instituted mandatory random drug testing. Wednesday was my lucky day. As always when these things happen, they came and got me right after I came back from the bathroom. Fortunately, the myelitis wasn't bad last week and 48 ounces of water and an hour or so later I was done.

The way these things go, an individual has 3 hours from the time they report to fill the cup. If they can't a doctor is called for a medical reason. Obviously I have two dead fire reasons why I may not be able to provide a sample. There's were days that as much as I tried, nothing would flow, for hours. No matter how full my bladder was. There's nothing that hampers performance more than frustration.

If there's anyone out there that's run into a problem, please share. I imagine that if it ever became a problem, I could always throw ADA at them and see where that gets me.

"Taking The Sleigh For a Ride . . ."

2008-03-04T18:16:00.002-06:00

For those unfamiliar with Saint Louis weather, it can turn on a dime. This weekend was awesome. Saturday it was in the mid 60's and Sunday was in the mid 70's. March was entering like a lamb only to be eaten by the lion. Monday . . . Ice. Tuesday 10+ inches of snow in about 5 hours.

Needless-to-say, traffic was a little insane. The main roads were a parking lot and the highways were a nightmare. At one point, MODOT wanted to close the highways due to so many accidents. With the accidents, they couldn't really plow the roads. Thankfully, none of that mattered to me.

I have what someone called an alpha male vehicle: 2008 Hummer H3 Alpha. During Christmas there was a Hummer commercial that showed a top down view of a Hummer zipping through the snow and the only caption was "Taking The Sleigh For a Ride." I took the highway home and out of 4 lanes, two or three had cars on them, so I made my own lane. It was awesome. It only took me 15 minutes longer than normal.

With the warm weather came activity. I was tapped to help a friend finish out his basement. Taking advantage of the weather, we peppered the volleyball around. It was the first time I touched a volleyball since September. It wasn't the best but it wasn't like it was the last time. The myelitis is still affecting my reaction time, my coordination was better, jumping though . . . lacking.

Last post I said I had a check up with my neurologist that would have been yesterday. Guy gene kicked in and the appointment wasn't yesterday. I didn't get the reminder call all of last week and for the life of me couldn't figure out why. After there was no call on Friday, I decided to check the appointment card. This Friday.

A Past Life, But only a Shadow

2008-02-23T21:57:00.002-06:00

Yes, I know. It's been ten days since I last wrote. Truth be told, I haven't had the desire or the inclination to even "pen" my name. Being a "summer" child, winter is never my best time of year. All of my craziness seems to come out. It was most prevalent during college. Nothing is more depressing than having to walk to class in the cold, then come home, do homework and then do the same thing all over again.

Volleyball always kept me grounded. Only a genuine love for the game would make someone get up at 5 in the morning drive two hours, play until 7 at night sometimes, and then party till all hours in the night. While my volleyball career, to this date, not as long as I would have liked, it was successful. It's broken down into two areas: indoor and outdoor. I started off playing doubles and moved to indoor to keep my skills up for outdoor. While outdoors it's just my partner and I; indoors had five other people. Five different skill levels, 5 different, personalities, 5 different temperaments. I could write an entire paper on what I hate about indoor volleyball.

Keeping it short, I became disenfranchised a long time ago. When the myelitis started last February, I had an excuse to medically remove myself from a team that I really didn't want to be on. I had no idea what was going on and the guy gene was preventing me from going to a doctor. Hindsight and all, If I went then, one steroid treatment probably would have done the trick.

I haven't been a part of the volleyball world for a while. Just like any circle where everybody know everybody else, stories get around. My face only made occasional appearances and then completely dropped out last July. I worked out for the first time in a month and when I saw that I had a voicemail from somebody I haven't talked to in a while. Made me an offer to play on a couple of co-ed teams.

Outside of my family and circle of friends, nobody really knows. It's not that I have a problem telling people. I don't. When your not part of that world any more, the chances aren't there. I've known this person for quite a while, so I got the truth out there from the start. Like most people, transverse myelitis doesn't register. Mention MS, and the ceiling just feel in. The MS isn't preventing me from playing it's the myelitis. I went through all of the things that suck. "The Steve that you knew is no more and I don't know if he's ever going to come back. Compliments of all compliments, and it's not the first time I've heard it, "You should play anyway because you would still be better than most people out there."

It's not totally a case of lack of skills, although they are certainly lacking not having played in 8 months. It's a case of looking foolish. I was two days into the first round of steroids and tried to play soccer. Mind you, the myelitis was pretty severe. Simple things that I had been doing for years suddenly became difficult. It was only two on two and I knew my friends would never laugh or anything and I know they wouldn't pity me to my face. I went for a running throw in and completely lost my balance and ended up on my face before I knew what happened.

To hear: "Oh how the mighty have fallen . . ." would be tough to bear. Of all the things that I've read from people that have MS, it's that they don't want to be pitied. My standing rule is that don't ask how I'm feeling. Ask about myelitis, ask about MS, but not how I'm feeling. First, I get annoyed with it because everyone skips over the myelitis and goes straight to the MS. Understandable. The unknown age of scar tissue in my brain and no presentation of symptoms can lead to one being annoyed with "How are you?" or "Why are you tired?" The last question probably sets me off more than anything. Although, not normally a nap taker, sometimes I just get tired.

This has been a longer rant then I had planned, but I had to get it off my chest. I go back to the neurologist on 3 March. Do I go back on steroids or not? Stay tuned.

Commercialism

2008-02-13T20:21:00.002-06:00

Just a couple of updates . . . From Monday's shot, I have a dime sized bruise. It is a lovely shade of puple with just a tinge of green. Such a lovely color for the coming spring.

Myelitis . . . still there, this week doesn't seem to be as bad. Still can't do anything really active or else my coordination goes down hill.

As tomorrow is Valentines Day, just a paragraph on the most commercial of all commercial holidays. Such has the holiday become that it stresses everyone out that has someone in their life. What do I get for that special someone? On the flip side, for those that don't have someone in their lives, all the forced commercialism makes said people constantly aware of how alone they really are.

As one girlfriend once said "Happy singles awareness day!" As another said "Don't you dare get me anything for Valentines day. If you truly care about me, there's 364 other days that you can and should show it. You shouldn't feel obligated just because everyone else does and if you don't show it the other 364 days, why are we together?"

Think and ponder.

What's in a weak?

2008-02-11T20:07:00.000-06:00

No . . . I didn't spell it incorrectly. True, I haven't written in a week, due to the fact that I was feeling rather weak last week. I had that mind splitting headache for 4 straight days. After spending 9 hours in a horriblly lit office and staring at a computer screen, the last thing I wanted to do was write. Also there has been a flu/lung something going around and miraculously enough, I haven't caught it. For those that don't know, one of the downsides of interferon is a weakening of the immune system.

On to a brief rant. In a former life, I had a desire to be an architect. Academicly, I only lasted a year, but the desire and the want was always there. The jobs that I have had have all been good. Working for my father, there's 2 acres of green space, other places had plenty of windows and natural light. When I went to work for my current employer, we were in an office park. There were plenty of windows: the walls were half solid and half glass and the building sat on the shore of a lake. Then in 2006 we moved . . . to a converted warehouse. There are windows, but nobody can see them, no fresh air other then what comes in when someone opens one of the two doors, there's no green space to speak of. Unless you consider the covered over garbage dump in the back. The walls are painted tan and brown and the carpet is burn umber and tan. The cube walls are light brown. There is so much floresent lighting that most people have headaches on a daily basis. As one student in a critique so eloquently put it: If I did that, I would never admit that piece of crap came out of my ass. Whomever did the interior design should be fired and publicly ridiculed as an idiot. If anyone has seen "Office Space" that's what I'm in.

The nurses from MS Lifelines called last week to follow up on how I was doing. While it is nice that they do it, it just adds to the confusion on my part. The nurse asked I was coping and dealing with my MS symptoms. My response was: "I don't have symptoms, I've never presented with any." After a pregnant pause . . . "Oh . . . It's good that your on the medication now because it will certainly reduce any flare ups you may have." No kidding.

That still doesn't help me on this journey to the great unkown. Also to top the week off, the old pharmacy called and said I should be dealing with my current pharmacy insteady of them for the Rebif. NFS. If they would have told me that in the very beginning, I wouldn't have missed an injection and delayed on by 24 hours. Instead, they call two weeks after the script ran out.

This weekend, I had a guys night in and played video games. After doing the dinner thing, I brought out Rock Band and two friends and myself jammed out. As much as we could, but every one had fun. It was good way to forget how crappy the week had been.

Superbowl Sunday

2008-02-03T22:02:00.000-06:00

There was absolutely nothing on TV today unless you wanted to watch the NFL pre-game that started about . . . last week. I haven't been to much of a pro football fan since college. I've always looked college football and the what the rest of the world calls football. As much as the commercials are good, they aren't worth having to sit through 3 hours of mindless bable form the announcers. Plus, I really didn't care about the teams. Although, given what happened with the Patriots this year, I didn't want them to win.

There is a saying in sports: "If your not cheating, you not playing." In baseball, it's about trying to steal signs. On problem, you may know your going to be thrown a fastball but you still have to hit it. Knowing the formation of the defense and arranging your pass routes to put receivers where the defense isn't makes catching the football that much easier. Congrats to the Giants.

On to me . . .

I've gotten used to the fact that every day is different. The myelitis makes waking up an adventure. For about the last week, every day is just a little bit better and then today happens. It's never as bad as before the second round of steroids, but bad enough that those thoughts of "if it gets just a little bit better, I'll be able to do all the old things that I used to do." I've given up on those thoughts a long time ago, but there is always that hope.

Hope that it will all go away, hope that it will go away enough that I can run or play volleyball, hope that the MS will never present, hope that hope will eventually pay off.

Crisis Averted

2008-01-31T19:09:00.000-06:00

Update on the Rebif. . .

Monday is always a busy day at work so I didn't get a chance to call the pharmacy. Tueday I did. Some how, some way, they gave me the wrong fax number. Called the doctor's office for the third time. "Didn't we already fax this twice?"

Less than 24 hours later, the pharmacy was calling to arrange shipment and I got it today. 3 months worth. With a little added bonus. Something to make you feel your insurance company is working for you. The first time, the pharmacy just sent me a bill for $90. This time it was chocked full of information. It was like a Mastercard commercial:

Market Price: $6,800
Our Price: $5,300
Your Price: $150
We saved you $5,150
Knowing that your semi-protected from any future flare-ups: We'll bill you!!!

Overall, I missed one shot and delayed another 24 hours. It still hurts like hell. My six day vacation is over. It's not back to the waiting game of "if and when." It's just that every other day reminder when I have to give myself a shot.

..|.. Part 2

2008-01-26T23:30:00.000-06:00

One last ditch effort in order to get another supply of injections before I officially go off my meds as of Monday. Knowing bureaucracy, I called the new insurance company pharmacy to see if they got the script fax from the doctor's office. Nope, was the answer. I called the doctor's office and they faxed it on Thursday and would fax it again on Friday. In one last ditch effort, I called the old pharmacy to see if I could get it at cost. After a 3 minute hold wait, I was told yes, you could have a one months supply for $2,200. There it was . . . The choice to go without for a week or pay out a couple grand for peace of mind. I decided to go without.

Frankly, it will be a relief to go without the bruising, the flu, the intense headaches. Then I was struck with another thought. It's cheaper to treat a flare up of MS then it is for the semi/pseudo preventative. From what I understand a flare up is treated with Solumedrol/prednisone. With insurance, I paid $10 for the steroids and for the nurse visit and IV's $34. I know interferon has to cultivated and extracted and formulated, but $2,200 for 12 syringes?

This next part will probably tick a lot of people off. My little blow up over insurance got some people talking: Steve just doesn't understand, he doesn't know what it's like to pay more for insurance and get less. The next thing is "It needs to be fixed . . . " It got me to thinking. First off, I don't think most people can argue an issue like this without it being a personal thing. In order to do so, you have to be logical, knowledgeable, and dispassionate. The next thing is are you a bottom up thinker or a top down thinker?

To me, if your a bottom up thinker, in this situation, you argue how to make the situation better for yourself. Easiest answer is that the government needs to step in. If you're a top down thinker, you argue on how to make the situation better for everyone. You try to fix what's wrong with the entire system. I'm not going to get on a soap box and say this or that needs to be done. There's no right answer because there are no answers. I don't think socialized medicine is the answer and there are to many variables to try and fix they system.

What do you do? You make a choice: $2,200 or the greater chance for a flare up and $50 for steroids.

..|..

2008-01-24T19:32:00.000-06:00

That's my weak attempt at the cyber finger.

Hadn't heard from the pharmacy all week so I called today. Gave them my usual information, then "Can I put you on hold?" Oh hell. A minute later, they tell me something that they should have told me earlier in the week. Evidently, with specialty drugs, the insurance companies use one specialty pharmacy. My new insurance company isn't compatible with the old pharmacy. Talk about a cluster/SNAFU/FUBAR. It is just unbelievable to me that I had to call to find this information out and then run around with my hair on fire.

After I got off the phone with the old pharmacy, made a call to new insurance company. One phone call got redirected into another one. "Sure we can help you." I had to get pre-registered with the pharmacy, told to expect a phone call in the next 48 hours to fully register, in the meantime, call your doctor and get them to fax the script in.

Enter Act II for the drama of the day . . . the over worried/over protective parents who have asked every day this week if I've heard from the pharmacy never heard a word I said last week. "Your drugs didn't show up today." Which was totally contrary to what I said last week: "Call Thursday if you don't hear from us." Explained what happened, kept getting more and more angry with every question. All of a sudden I'm being defensive and I'm a liar. I lost it.

The blow up that was gradually building up since all of this started finally boiled over. The thing that separates my friends from my parents is that my friends don't treat me any differently than before. My parents treat me like I'm soda glass and the littlest thing will break me. If I sneeze it creates havoc. I don't want people to ask how I'm doing, I'll tell you. You want to ask about MS, I'll tell you. You wanna know how I'm dealing with MS . . . couldn't tell you. Aside from the myelitis, that's the closest I've come to any similar symptoms.

There is a man at work that is in a wheelchair from MS. He's had it for 15 years. Gradually started out like everyone else, I imagine. I've only known him for about 4 years. He used to walk with a cane. On his bad days he had a wheelchair. Gradually he became worse and worse. I would have to help him out of his car because he wasn't strong enough to push his upper body up. On his bad days, myself and another person would have to cradle lift him up into a chair. He tired out easily and his muscle endurance was next to nothing.

I look at him and I am so far from where he is now or even where he was when I first knew him. I can't even compare.

After today, I just want to give the world the finger.

"A back, a back, my kingdom for a back"

2008-01-22T19:55:00.000-06:00

There's something to be said for my limberness that I can put my socks on while laying on my back. Actually, that's the only way I can put my socks on. Back still hurts, but getting better. It's been bad for 15 years, some times when it goes out, it is bad, others worse, sometimes not bad at all. It's something I've just gotten used to. It hurts sometimes.

I think I'm running into insurance problems that people with MS run into. I decided on Rebif on a Friday, by the next Saturday, the mail order pharmacy was calling to set up a delivery. 1 January 2008, my employer changed insurance providers. Hindsight and all, I should have called earlier, but I called for my refill last Tuesday and gave my new insurance card. Friday . . . still haven't heard anything. Call . . . insurance still hasn't signed off on script. "We'll put a rush order on with the insurance company. Call us Thursday if you haven't heard anything." I run out this Friday.

This is where that strange dichotomy that is my MS comes in: Haven't presented with any symptoms yet I am on an outrageously expensive drug to help prevent any future outbreaks. Want to know how much of a crutch a drug is that hurts like hell to inject is when you are facing not having it. In 99% of my mind it's not that big a deal. I was diagnosed on 10/2 and didn't start injecting until 12/3. If I was under that much risk, I believe the neurologist would have forgone the steroids for the myelitis and started right with the Rebif. Nevertheless, it is still a concern. On the flip side, I'm hoping for one more round of steroids and maybe this time, the myelitis will totally go away or reduce to such a degree that I can actually play volleyball again. If that happens, I go off the Rebif anyway.

Oh ya, last nights shot . . . took my breath away it hurt so bad.

Do Nothing Sunday

2008-01-20T20:10:00.000-06:00

Backs still out. Better, but still out.

Catch .22. Book to some, just a phrase to others. All it means is a choice between two equally unattractive choices. The myelitis is set off with heat. With every shower or bath, boom . . . more tingles. What helps my bad back when it's like this: heat. Since I really can't do anything today, it's an even trade off.

Today has given me time to philosophize which I haven't done in a while. I was thinking about searching. We are searching, the difference is for what. I think that if we know ourselves, our path is clear. Our goals are defined. What happens if we know ourselves, yet deny who we are. What happens when you have everything that you've ever wanted right in front of you, yet you accept it for what it is, forget what it took to get it, and seek out the next great thing.

I think it's an empty life. You're always looking for something to fill the emptiness, yet whatever it is, you feel it is never enough. When in actuality, it's more than you could have ever wanted. You're always sacrificing what you have for the great unknown. The thrill is in the hunt and when the hunt is over, it's time to move on to the next hunt. And the next. And the next.

The thought for the day is: Before moving on and denying what you have for the next thing you feel you're missing, look inside yourself and ask if this is replacing, filling, or is the search the true representation of what you are.

I am in . . .

2008-01-19T18:00:00.000-06:00

Hell. Because of the myelitis, the only exercise I can do is work out. When volleyball was my life, I worked out to improve my game. As I got older, I worked out to keep what game I had. Now, I work out to preserve what strength that I have and to keep fit in case that day comes when I have an flare up and the MS presents itself.

Every day is different and presents varying degrees of how I feel. Tuesday was back to working out. Leg day. Wednesday another injection and working the arms. I felt pretty good. Usually, once every two weeks I try to go heavy. Since I felt good today, I did a combination: medium weights with step ups and step downs. I figured that the muscle pain I was to endure the next day would help mask the flu induced by the shot. Great plan I said to myself.

Thursday . . . muscle pain and I felt good when I woke up. Except for an hour later when the flu kicked in. Two pills and an hour after that, back to normal. Except for the muscle that I seemed to have pulled in my back that threw it out again.

Dante needed to add another level of hell in "Paradise Lost" because the combination of a thrown back and myelitis is a one that truly should be missed. For those that may be reading this that don't know the feeling of either, imagine the feeling after the pain recedes from hitting your funny bone and all that remains is the tingling all through your arm. I have that from the toes on my left foot all the way up to my rib cage. I have it 24/7. Now, add the pulled muscle in my lower back that pulls my spine out of alignment. Oh, did I mention that even below the layer of fat I have on my stomach, my abs are still strong. They want to compensate for the pulled muscle and clench and pull themselves.

It is my life and something that I've gotten used to.

Another Day, Another Injection

2008-01-15T21:54:00.000-06:00

Not much to report. I felt better Sunday, but was so drained from Saturday, I really didn't feel like doing anything Yesterday was pure hell. I was back to feeling bad. I still had the headache that started Friday night. I didn't sleep well either. The myelitis was making my feet burn. All day I was dreading that syringe awaiting me when I got home. If I felt this bad after almost three days, what was another dose going to do to me?

Surprising enough, I felt better after the shot. The shot itself, still hurts like a mother. I iced up the site for 10 minutes and it still burned going in. My problem is I don't have enough injectionable fat. I was an athlete and still consider myself one. The only fat I have is on my backside and my waistline. Everything else is solid muscle.

Anyway, today, I had the usual joint pain and the "my skin hurts to touch" usual flu feeling. After a couple ibuprofen, I was back to normal. It was just another day, another injection.

9 January - 12 January

2008-01-12T22:08:00.000-06:00

I haven't written in a few days because there hasn't been a lot to write about. I didn't work out again until Thursday because I was to sore from the weekend. The thing about myelitis is I can't quit figure out if it makes the muscle pain better or worse.

I've shot myself up twice. I think I pretty much sleep through the worst of the side affects. I shoot up at 5:30, by 9:30 I start getting a low grade headache. Two ibuprofen takes care of it. I wake up and I don't feel bad, but I don't feel good either. The day after the shot is a tiring day. People say the notice I go through some mood swings on Tuesdays and Thursdays. I don't notice it, but if people do, maybe it's true.

Yesterday's shot made me feel absolutely horrible today. Maybe it's me, but it seems that sometimes Saturday's are a culmination of the entire week. The days after the shot during the week aren't so bad. Most Saturday's though . . . I woke with that usual feeling the day after and then it just got worse: headache all day, sick to my stomach, and just a general feeling of blah.

Sleep will be welcome relief after today.

Sleep . . . We don't need no stinking sleep

2008-01-08T20:20:00.000-06:00

Not a lot to write today. No site reaction to the shot and felt just a little bad, but that could be because it's the second night that I consistently woke up every two hours. We had a huge storm system that came in . . . thunder, lightening, everything that usually makes me sleep. But not used to it in January.

I kinda lost it at work today. We changed insurance carriers at the beginning of the year. It has it's positives and negatives. Of course nobody ever mentions the positives. Everybody was bitching about their prescriptions and how much they cost now compared to before. I couldn't take anymore, lack of sleep certainly helped. "you people have nothing on me. Every other day, I'm injecting $125. Without insurance, my drug cost would be about $16,000 a year. Now tell me about your problems."

I know people talk to hear themselves talk and it's always easier to complain than compliment, but I tell ya. It kinda shut people up, though. Nothing like shock value to shut people up.

Par for the course

2008-01-07T19:15:00.000-06:00

Monday's are really busy at work. It's just the nature of the business. One of the unattractive things about transverse myelitis and MS is how much of an affect it has on the things that come natural. One of the first symptoms of the myelitis was that I had trouble urinating. See, not attractive. At first I thought it was prostate problems. Today, I had a big glass or orange juice, three 16 oz glasses of water and a pop. By three o'clock, I realized that "Hey . . ." A full bladder and no sensation. Welcome to a day in the life.

Monday's are also another day: shoot myself in the abs day. Iced up the site, alcohol swab, let dry, place Rebiject against skin, apply pressure, push button and then Owwwww. It's tough for me to find places to inject myself. Even though cardio wise, not so much in shape, the rest of me though, rock hard. Except for my stomach. Age certainly does show. I used to have a six pack with side handles, then just a six pack, then a four pack, two pack and then my flat, washboard stomach became and outie. It is what it is.

The January thaw comes a little early this year. It's been a April around here the last couple of days. Even with the cloudy weather, it was nice to have the windows down and the sunroof open. Sometimes the simple things are nice.

Does a title really matter?

2008-01-06T21:25:00.000-06:00

Not really waxing philosophical today. I did a leg workout and did a cardio afterwards. Cardio was probably a mistake. It was warm in the fitness center and I probably did to much. I've done nothing but sit on my butt for the last month. For those who think volleyball is a picnic game it's not. It's a game of going from a complete stop to a burst of speed. The correct term is anaerobic. You have to have good aerobic fitness to have good anaerobic fitness. The mind remembers what the body used to be able to do. The body, on the other hand, fights against the mind. Muscle memory is forgotten. Add MS and myelitis to the picture. There is no such thing as what I used to do, it's "what can I do today." I went a little hard today. I was sucking air on an elliptical machine and gave myself a terrible headache. It bordered between a brain freeze and a migraine.

I wanted to take the time to thank the person that decided to comment on my post from yesterday. I didn't know if anyone was reading and frankly, not expecting one after only 8 posts. I've played volleyball for 17 years. There's not much that I haven't done in the sport. I learned the game on my own and had and have a genuine love for the game. In the last few years, when the kids that I coached could beat the coach and it got harder and harder to make it through the day, age was telling me something. What really killed it was the cliques. That's a novel in itself. I've been moving farther from the game for the last couple of years.

Had this happened four or five years ago when I was at the peak of "career" I would have been devastated. As it is, while my time away from volleyball has been greater and greater, it sucks that I just can't go play. Nevertheless, I do realize I am on a journey:physically, mentally, emotionally, spiritually and every other "ly" that could be thought of. I know that there are things I can do and not a lot that I can't. It's just the things I used to excel at are a struggle. I realize that, but tell that to the competitor in me.

A lot has changed for me and everyday is new and different and I am fine with that.

Does a title really matter?

2008-01-06T21:23:00.000-06:00

Could it really be that simple?

2008-01-05T20:15:00.000-06:00

I moved my injection time up yesterday. I started getting the same type of headache that I did Monday. When I woke up though, no flu. Every once in a while I'll do an MS search. Consequently, that's how this blog got started. I read someones blog and thought "What the hell?"

Searching more through that blog, there was a link to someones web page that takes the pragmatic view of MS. I read it and it wasn't the "everything is coming up roses" that we are so used to getting. I use "we" because I don't know what else to refer to myself as. I have no active lesions and the scar tissue from the ones I did have are old. The myelitis is the only thing I have going on. More on that later.

The theory is that MS is auto-immune and on this web page, I have to give the guy props because he did his research, back tracked through his life to a potential cause. Transverse myelitis can be caused by an infection and so MS might also. Something triggers the body to go into overload and attack itself. I immediately thought of two things: I had the chicken pox when I was 15 and when I was 18 or so I went off in the woods and had so many chigger bites that my lymph nodes swelled up. That's when I thought to myself: Could it really be that simple?

I haven't mention the myelitis in a while. It's always with me. My grandfather used to say that he brought his friend with him: "Arthur, Arthur Itis." Athritis. I kinda feel the same way. Before I went to the doctor, balance was an issue and so was coordination. Being an athlete, I was excellent at both. I had a 30 inch vertical jump. I doubt I could have jumped four inches let alone keep my balance when I came down. I could run forever and now I couldn't run 100 feet.

The first round of steroids did nothing. It was 10 days of 4 pills at 20 mg and then 3 for 3, 2 for 3, and 1 for 3. The 10 days did wonders. Everyday was different and better. By the second day of taking 3 pills, it didn't matter any more. It was coming back. By the time I was down to 1 pill, it wasn't making any difference.

After my next visit to the neurologist, taking care of the myelitis was more important than the MS. No activity . . . worry about it later. This time 5 days of Solumedrol followed by 5 days of 4 pills, 5 days of 3, 5 of 2, and 5 of 1.

Walking around with an IV line in, washing the line with saline and heprine certainly raised some eyebrows when I was at work. Some people know of the MS, most don't. Of course questions were asked. I had an easy answer. The Solumedrol certainly helped and the rest of the pills certainly did, but it didn't and still hasn't gone away. Everyday is different.

Over Christmas, it felt like it was coming back full force. "Will I never be rid of this? Is this what life holds for me? Will I ever have my old life back?" All of a sudden it changed and was almost tolerable. Last Sunday, I almost thought I could go play volleyball. Running up the stairs though, kinda changed that. It felt like there were bands around my knees. Hard to run, plant, bend knees, push, and lift yourself up when your knees don't work.

I haven't worked out since I started shooting up. Whenever I would work out, the tingling would get worse, the vision in my right eye would get all milky, just not a good feeling. If volleyball has taught me anything is to fight through the pain. I've had a dislocated pinkie, endless sprained ankles and a partially torn MCL. What's a little tingle and numbness?

I worked out tonight for the first time in a month. Maybe the interferon is helping the myelitis or maybe it is just hopeful thinking and there's more to my MS. While always there, the tingles didn't get as pronounced and the vision thing was almost non-existent. I didn't do any cardio though and that's when things would get fun.

Friend ends with End

2008-01-04T20:05:00.000-06:00

On the MS watch. Monday/Tuesday was no joke. Thursday I felt like I got hit by a truck. It's been a while since I've had the flu but Thursday morning was a good reminder. Headache, back ache, sore joints and that general feeling that I feel like crap. Two ibuprofen and an hour later the aches and pains were gone and an hour after that back to normal. Tonight I shrugged off the cult of manliness, iced up the injection site, pulled the trigger and didn't even feel it. ;-)

Do people realize what comes out of their mouth and realize that their actions totally go against what they just said. I think that's called being a hypocrite. Webster's defines hypocrite as "a person who acts in contradiction to his or her stated beliefs or feelings." The saying is actions speak louder than words which is true. But words mean things. Thoughts and ideas span over time and can not die.

In this digital age of emails, text messages, and even this blog . . . do these words mean anything? Do they make a difference? Or are they just empty and hollow? Those stated thoughts and ideas expressed and denied, contradicted and so many others.

What defines a person today? How do they define themselves? How do others?

Thank You Sir, May I Have Enother

2008-01-02T20:05:00.000-06:00

Definately a hot poker. This time, where I shot myself, add a jackhammer on top off it. I told another person I had MS today. She, like everyone else, even myself, asked "What is it?" Strangely enough, she said she knew two other people that had been diagnosed. Living in New York City, and both individuals were women, it's statistically possible. Not that it's a lucky thing, but how does one person now know three people and I don't know any?

Vacation over . . . back to work. That place we go on a daily basis. But to what end? We all work because we have to. We have bills to pay, we have a lifestyle that we must support, a family to support. But does it mean anything? Do we make a difference? Does any one really see what we do?

How many sayings come to mind? The sqeaky wheel gets the grease, a raised nail gets the hammer . . . and so many others. I say: Dare to be Different. Never be conformist.

Later that same day . . .

2008-01-01T20:59:00.000-06:00

The day started at 11:43. I woke up with the same splitting headache that I fell asleep with. If I have a headache that bad, I should have at least drank enough alcohol to warrant it. Anyway, I stayed in bed till until I had to cook dinner. I was actually feeling better. Still felt like I had a hangover.

Tomorrow . . . Back to work. Back to all the simplistic people and their petty lives. Back to the questions of "How was your vacation?" I have a one word answer for them: Cathartic.

Happy New Year

2008-01-01T01:48:00.000-06:00

2007 is over and good riddance. In a year that was filled with pluses and minuses, it certainly wasn't a good year. I lost two relatives and because of the MS, I killed a part of myself off but was reborn into someone else. That's part of the territory.

I've been on vacation since Christmas Eve. Out of those days, I haven't felt great 2 out of 3 days after my shot. Tonight, I had to leave a party early. It was the first shot at the full dosage. My comment about a hot poker rang true tonight. I've stopped doing the manual injections and started using the gun. I haven't bruised as much or at all.

I felt fine for a few hours then just started getting hot and cold flashes, sweats and then a pounding headache. The next day after my last shot at 50% was the worst I've felt so far. Later today will be a joy. Although if this brief history rings true, it won't be for a while until the full affects are felt. Tonight could have just been a coincidence, or not.

On the plus side, I reconnected with an old buddy. A person he works with was also just diagnosed with MS. In order to help both of us, he wants to get us together. While this is an excellent idea, it brings about that fine line of "I have MS, but don't have it." I've never presented with any symptoms. I was only diagnosed because an MRI showed scar tissue. How old, nobody could tell.

One of the slogans for MSLife Lines is "You don't get MS until you get MS." I have it and I still don't get it. I've read all about it, read the horror stories, know what the future could hold, but what about the present? Usually, when someone is diagnosed with a disease, their life changes and their life is defined by their disease. When it's discovered of an incorrect diagnosis after an extended period of time, depression usually sets in. That one defining, constant thing is suddenly gone. One is left with the question "Who am I?"

I'm still new at this. I'm still trying to define who I am. Hell, I was trying to do that before this. When one suddenly has a ticking time bomb inside them and there's no telling when it could go off, what does one do. My philosophy has always been live life to the fullest, act like it's the last day of your life because there may never be a tomorrow. Great idea when it's only yourself you have to worry about. When all of a sudden your future may depend on someone having to take care of you when you can't take care of yourself, being scared and fear sets in.

Enough waxing philosophical . . . more when the desire arises.

2007-12-30T00:22:00.000-06:00

I shoot up on Monday's, Wednesday, and Friday's. The supposed side affects, I didn't have. That first week. The following Tuesday though . . . bad . . . Thursday, even worse. The drug company that makes Rebif has their own hotline/support network. Surprising to me, a nurse called at the end of the second week to check up on me. Some things are just to obvious. After discussing the recent onset of my flu like symptoms, the nurse suggested that I move my injection time up. "Why didn't I think of that. . ." came to mind.

Week 3 . . . up the dosage. . . 50%

That slight burning . . . ha. Hot poker right in the stomach. It wasn't that bad, but it was a little uncomfortable. A week afterward, there was still a bruise.

Since all of this is in the midst of the holiday season, there's tons of Christmas parties. For someone that could drink like a fish, it is certainly noticeable when said person isn't drinking at all. Side affect of interferon is the possibility of decreased liver function. I've had to adjust to that portion of my new life. I've done it before and under much tougher circumstances. Try staying sober for six months when your in a fraternity. Warm weather came and there is nothing better than a cold beer.

Anyway . . . people certainly notice.

2007-12-27T22:20:00.000-06:00

I start my IV steroids on a Monday. Just like last time, sleep is hard to come by. This time, I have a little valium to help the process. I'm supposed to take 5mg three times a day. Whether it's my high metabolism or something else, the valium has no affect on me at all. So I stopped taking them. The IV treatment had an immediate affect, more so than the pills the last time. Was there to be light at the end of the tunnel??? Stay tuned.

The day after my last IV bag, I was on my way to visit my cousin who I haven't seen for 7 years. Throw in an aunt, uncle and grandparents and it was going to be a busy week for a vacation. Obviously, the question on everyones mind was the MS. I answered everything everyone asked except my own questions: What does it mean to have MS and not have presented with any symptoms? They myelitis is as close as I've come and it's just an annoyance that keeps me from doing what I used to do.

During my week of vacation, two months worth of Rebif arrived, an auto-injector, and travel case. Look what I have to look forward to when I get home. My week drifts quickly by and it's time to travel home to face my demons.

Arriving home and finding the syringes in the refrigerator and the gun brought everything into stark reality. Up until this point, MS was just something I talked about. My little insulated world didn't come crashing down, but it certainly was rocked. It's Thanksgiving week and I still have two more weeks of steroids to take. They myelitis isn't completely gone, but it's slowly going away.

December 3 . . . I started my injections. The drug company that makes Rebif contracts out and has a visiting nurse come in and illustrate how to inject, answer questions, things like that. Everything that was on the DVD that came with the messenger bag. After watching a friend inject himself with insulin, I think I can manage. It's part of the service, it's free, so I bring it on.

I follow the guide and decide to shoot up around 9:00 PM. It's a couple hours before I usually go to bed, so if I have any side affects, I should sleep through it. I've been pretty pragmatic about the whole shot thing. It's not like I have a choice, I just have to do it. After seeing the tiny needle, what's the big deal.

Instead of using the gun, for myself, I need to do it manually. Call it the cult of manliness or call it whatever you want. I also decided to start off on my stomach. Thinking you can do something is only half the battle, you actually have to do it. After grabbing what little fat I have, I took the cap off with my teeth and then held the needle over my injection site for about a minute and finally made the plunge.

The needle is so tiny that I had to actually double check and make sure it was in. The first two weeks of injections are only 20% of a normal dose. A little minor burning during the injection, I draw out the needle and there's not even a mark. A great first shot.

The Beginning

2007-12-26T22:47:00.000-06:00

For those taking the time to read this, I thank you.

I was diagnosed with MS on 2 October 2007. However, my story is not like the usual ones. In August, I started out with a tingling that moved from rib cage down the rest of the left side of my body. I'm sure we can all relate to that. Strange, I said to myself. Suffering from a bad back for 15 years, I thought it was another curve it was throwing at me.

A pinched nerve. I'll lay off of my usual activities and it will just go away. It didn't and two weeks after it first started it, moved to my right foot and leg , got more pronounced and the vision in my right eye started doing strange things: bright lights and physical activity usually set it off. Something is seriously wrong.

Being an athelete, I had an orthopedist not a general practicioner. I knew I was going to need a referal. It took me two weeks to see my parents doctor since I was a new patient. Two weeks later, I get the examination and knew what I already knew: something is not right, let's get you to a neurologist. Miracle of all miracles, I got in to see one the same day.

After going through the the same tests and more detailed questions, preliminary diagnosis is transverse myelitis. I know what that is, it's a pain, but it can be treated. I'm scheduled for a contrast MRI on my mid and lower back in 5 days, come back in six weeks. In the meantime, I research myelitis and it's the first time I hear about MS being mentioned, so I research that too.

The next day after the MRI's the doctor's office calls and confirms the diagnosis: transverse myelitis in two areas. Great . . . put me on steroids and send me on my way. However, now the doctore wants me to have a head and neck MRI and see an opthomologist also. Another 5 days on the MRI and 7 for the opthomologist.

Filling out the paperwork at the hospital for the MRI, I see MS all over it. Things not looking all that great now. I spend about 30 minutes in the drum and out I go. Two days later, no word from the neurologist and I'm off to see about my eyes. Word from the opthomologist: myelitis affecting the vision but cornea, retina, and optic nerve all look healthy, come back in a year. One less thing to sweat, now just hear back on the MRI.

3 days go by, 4, 5, 6, 7 and finally the call. I heard "you show indications of MS" and then everything got fuzzy. The last MRI showed scar tissue in my head an neck. How old it was couldn't be determined and I may have never even noticed an episode. It's almost three weeks till my appointment. At that time, we'll talk about drug treatments and answer questions that I might have.

That was the longest day. I figured that I needed to break the news to my family and friends that day. Better to do it all at once rather than having to do it over and over again. The more I said it the easier it got. Although to this day, it's still not easy, but it is a matter of fact.

For close to the next three weeks, I research, I read and I finish the steroids. Which, after the second step down, everything came back. Finally, the day came to go back to the doctor. We have a nice and long conversation. I'm going back on an steroids, this time 5 days of IV's followed by 20 days of pills. For the MS . . . we agree to try Rebif. I am then given a canvas messenger bag that has a hard-bound, full color binder, a DVD and CD. Serious Stuff

More tomorrow . . .