31 January 2008

Crisis Averted

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.

26 January 2008

..|.. Part 2

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.

24 January 2008


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.

22 January 2008

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

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.

20 January 2008

Do Nothing Sunday

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.

19 January 2008

I am in . . .

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.

15 January 2008

Another Day, Another Injection

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.

12 January 2008

9 January - 12 January

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.

08 January 2008

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

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.

07 January 2008

Par for the course

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.

06 January 2008

Does a title really matter?

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?

05 January 2008

Could it really be that simple?

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.

04 January 2008

Friend ends with End

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?

02 January 2008

Thank You Sir, May I Have Enother

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.

01 January 2008

Later that same day . . .

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

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.