Just riding the wave. . .

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

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

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

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

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

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 . . .

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

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

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

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

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

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

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

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

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

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

More to come later.

Remember, Remember

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

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

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

As if it was going to be a suprise

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

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

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

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

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

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

Stay tuned.

Yes, It's been a while

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

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

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

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

That's when things changed.

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

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

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

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

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

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

The year in review

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

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

Is all this the MS or is it the myelitis.

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

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

Empty and Black

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

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

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

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

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

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