Ok, its been like 2 months and my stomache is still queasy all the time, its really getting annoying. I think I’m going to go see a Gastroenterologist to find out whats wrong, but I don’t have a family doctor so a few places I’ve called said even though I have a PPO insurance, I still need some sort of letter or something that will refer me to a GI. F*CK DOCTORS, PILLS, SHOTS, AND EVERYTHING ELSE these bastards continue to prescribe to me. I hate it.

Other than that I’m fine.

I need as many opinions on this as I can get from alll of you who have multiple suckmyasys…

If you are in heat for extended periods of time, the next day does your stomach get icky and feel like you will chuck at any moment? This happened to me last week after I had a triple header softball game, as well as yesterday, a day after I moved dirt in my house for 9.5 hours.

Am I getting too much sun or is something else?

It didnt help yesterday that I was sick, for my dads birthday present which was my whole immediate family (brothers and sister, mom and dad) go to a Tiger baseball game. I spend half of the game in a grill/bar area where it wasnt as hot, but I lost enough energy not to be able to go to dinner with them after.

As you all know, we just got a new house. Turns out, an elder woman a few houses down has MS, but is not as fortunate as some of us on the progression of it. There is also another neighbor who says he has been diagnosed but will not get it treated (I don’t understand these people, but to each his own). I guess he is against meds, and feels “Mary Jane” is the only one to help. 400,000 cases in the United States and 3 (including me) are within 5 houses of eachother. Wierd.

I mentioned in my last post about my meds and the crappyness I feel.

Here is the reason I am on Avonex…

Once a week.

Plain and simple. I hate shots to begin with, let alone I can barely remember to take it once a week.

I have a PPO insurance policy, and the Tysabri (which I did love by the way, forget the crap surrounding it) is a $3000 infusion, I have to pay $200 approx of that. Well my insurance gives me a $1000 out-of-pocket premium for the year (like a deductable) and with 5 infusions I would hit that and then pay NOTHING. On a Rx, that is 360 a year always, not to mention my other medical bills. Trying to figure out whats worth it.

When Tysabri is released again (very soon I’m told by Biogen and Mich Inst of Neuro Disorders) I might get back on that.

OR I can not take anything 🙂 Yea right, those were the days.

Last night was my first softball game since the surgery and my at bats were crap (0-3) but I play 1st and we turned about 4 or so double plays and won 2-1 in extra innings.

Now on to the Gus Macker 3-on-3 basketball tourney this weekend. Plus I gotta get moving into my new house. sdehfsjdlhfsdljhflsdhoeihfds too much to do.

Does anyone with this stupid disease ever feel like not taking medicine anymore, not going to the doctor anymore, let the disease consume me and take it as God wished?

I’m tired of it. This among other things, like work, money, houses, etc. I’m physically and mentally exhausted. I need a day off, and not a day off getting blood work or checkups. Just a day to me to ease myself.

On a brighter note, my MS Walk is April 17th. My cousin is working as an intern with my uncles broking company which deals with celebs and athletes. He is getting some of the sports agents to get memorabilia together for silent auctions at the walk, example Barry Sanders. The walk, in which, I have so far raised $400+ for my pledges. Seems small in the grand scheme of things but I’m proud of it.

Any bit of help to cure this disease, even if its not in my lifetime. Cause I’m fed up with it, as you all probably are as well who have this thing.

So, found out my shakes were cause from the Zyban to quit smoking. There goes another hope out the window. Last week, I started feeling this uncomfortable discomfort in my inner leg. I went to see my neurologist for a checkup on tuesday, explained him my situation and discomfort, and he says it a possible hernia.

WHAT ELSE CAN GO WRONG WITH ME THIS YEAR??!!??

So now I have to go to a surgeon to check that out. And I took my Avonex today so I feel like absolute SHIZZLE.

My Warlock is up to level 41, on a bright note. At least I dont have to work at the restarunt this weekend.

I’ll tell you what, my life sucks the past week or so. My grandma made it through the surgery but the lumps had spread to her stomach, so Khemo it is. Doctor says there is a 50% chance she will make it 2 years, 15% 5 years. That sucks.

Then my wife gets back some blood test results that she took a few weeks ago, and she has hyperglycemia (low blood sugar). She has to change her diet a bit to keep her heart from racing. I guess we both have to deal with our own issues.

As for my issues, by doctor, or should I say “Team of Neurologists” called me in last Fri to tell everyone on Tysabri the REAL reasons it was suspended. Since my clinic was the biggest in the country for that trial, we get the low down pretty quick. The media did turn it a bit. This guy who obtained PML was in this trial for 2 years. What they are investigating is if this guy ever has MS at all, and not just this PML. They are seeing if it was linked to the drug at all. The other man who is sick DOES NOT have PML, according to a brain biopsy. They said something about this dormant virus (PC virus or something) that 85% of the population in the US have this virus that sits in your kidney or liver or something and gets triggerd by various things that no one knows. Again trying to see if Tysabri activates that. So the media really did twist this around a bit, so this is the real story.

As for me, my left arm, especially hand, can not stop shaking. Its starting to really get on my damn nerves, or lack thereof. Anyone else get this? Like a Parkinson’s twitch. Thank god I go back to the doctor on Tues.

This morning was my first infusion of Tysabri. Reminds me of getting Solumedrol. Maybe it’s because of the getting a drip from the same clinic. Anyway, one other person was getting it and another was getting steroids and khemo (sp?). I’m really tired of hearing people complain and feel sorry for themselves. I’m sorry, but there is nothing you can do to our disease by crying about it. Whatever.

Anyway it was an hour drip with an hour watchover. I watched Regis and Kelly. For the record, Kelly Rippa is one of the most perfectly beautiful woman I’ve seen. Perfect teeth, perfect eyes, hair, etc. Do you think she is 100% real? If she is, good for her parents, nice work.

As for insurance, they are approving people on an individual basis, not really a blanket coverage.

As for the next appointment, I go back for round 2 in 28 days, so you actually get 13 infusions a year. For the first month while its kicking in, I still have to take my Avonex. Ah well, so 4 more shots till I dont have to take it anymore. Fine with me.

So it’s scheduled. Next Tues @ 7:30. 1 Hour drip, 1 hour whatever after.

And how much is one administration?

$3,000!!

I need to make sure my insurance only makes me pay a co-pay for office visit or RX co-pay. If I have to cover %10-%20, I’m not sure I’d like to do that. I’ll keep you posted.

Finally today, for the first time in a while, I feel like a normal person. No sore legs, no jittery hands, no major headaches. Its comforting to know that I’m not always in a state of decline, even if for just a day or so, I can continue with my day like I used to.

::big grin::

So I found out Wednesday I had an appointment with my Neurologist and I dont know why. So I go into MINDS today (Michigan Institute of Neurological Disorders…catchy, huh?) and they ask me “So what are you here for?” I said, “I was hoping you were going to tell me, my next appt should be in March.”

Never got that solved why I had this mystery appointment. I figured, though, I might as well take advantage of it. I tell my doc I’ve been trying to quit smoking and its not working. The side effects of the Avonex combined with quitting smoking is too annoying. After discussion he decides to put me on Zyban for quitting. He then told me the story of how Zyban / Welbutrin started being used for smoking cessation.

Anyway, I have tried everything under the sun to quit, this may be my last hope. 7-12 week program for the Zyban, which is around when I have to see my doc next.

Take 2 of these and call me in the morning.