Happy Holidays

I am still recovering from back surgery. I was told it would take a year for the FUSION of L4, L5 & S1 to be completely healed. I only missed ONE Tysabri infusion. I did NOT have an MS flare-up after my surgery. Just a little clonus in my feet in the mornings & handwriting problems - finger tremors if I try to hold anything tightly. But I can play Carols on my piano with no problems! I'm practicing how to walk Up Straight, with a walker. I have to try Not to Twist or Bend. But I feel the surgery will eliminate weakness in my legs, that I thought was from MS. "...Merry Christmas to all and to all a Good Night-!"

Summer to Beat all Summers

I would say this is the Best Summer for me in many years. I've been on Tysabri for 3 years & was getting nervous about it. Saw my Neuro, he tested me and said the Tysabri is working, so Yipee! Now I can get my back problem fixed with some fusion surgery in Oct. and I should be "good to go" as they say. Looking forward to being able stand straight up & walk (using a walker for balance, so what? I WIll BE ABLE TO WALK-!!) Remember, even tho you have a disease, all your problems are NOT from the disease.

Just had to say...

Just had to say Goodbye to Michael Jackson here on my blog. I'm proud to say that he was my "Home Boy" because we both grew up in Gary, Indiana. Michael's Dad worked with my girlfriend's Dad in the Mill. My Dad was there also, but in another dept. Wish we all could go back to those days, "in the beginning"...

Into the Summer

The First Sunday in JUNE and we're going into the Summer, whether we're ready or NOT! My life has been going up and down, good times & bad. I try to enjoy the good times & know that the bad will Not Last Long. Most NORMAL people (without disabilities) take their Normalcy for granted. I wish I could shout at them & make them realize how Good They Have it. Not having to think about yourself & just LIVE, is a miracle in itself. Now I will jump off my Soapbox. My life with Tysabri is not a miracle & Way Too Expensive (not for ME but for Taxpayers). But it is the Best I can get at this time, & Who Knows? I might be crawling around on the floor without it. So I will continue in my line of support for this medicine, even tho I believe I started taking it Too Late to correct many of my MS problems. Please find something Every Day to Enjoy & Be Grateful for-!

Tysabri Insurance

If you're lucky like me, you get your Tysabri (or other medicine) paid for In Full-! I'm sorry, folks, I didn't do anything special to get to this point. I got on SSDI after the typical 2-year wait & because Tysabri is an infusion, it falls under Part B of Medicare. Overall Better coverage than Part D(pill-type medicine). And why Just Me--? Everyone who is disabled & on medicine should be getting medicine for Free, or a minimal co-pay, depending on their Insurance. So who should Pay, You Ask? Whoever has been playing the game of Making Huge Profits from this Medical System.
WE -- You & Me = The Common Man, The Little Guy, etc. has No Say in what's going on. What makes me say this--well, here's the story, no I mean the Facts: my latest EOB (Explanation of Benefits) shows that the hospital where I get my monthly infusions of Tysabri charged Medicare $9,726 (the most ever); Medicare Paid $9,223 and my supplemental paid $503. Because everyone has to cover expenses & try to "stay in the Black", everyone OVERCHARGES for services, medicines, etc. One thing leads to another & the ball keeps rolling. So Medicare is paying the "Fake" price of $9,223 for me to get Tysabri EVERY MONTH-? How ridiculous is this & how long will it go on-? I'm overwhelmed & don't have anything else to say at this time. P.S. I hope everyone had a nice Easter.

It's Green Day

P.S. Forgot to say Happy St. Patrick's Day-! I had surprise visitors this evening = highschool friends of my Mom's, how cool is that-?

Hi again, I guess I must be feeling better, as I'm not hanging around on the 'Net, blogging as much as I used to. Even tho I'm housebound much of the time, I find so much to do and I'm extra-slow at it, because I have this handicap called MS. Just went for my 35th Tysabri treatment last week. I got nervous about staying on it for so long, so I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committee that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting something deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months. So I feel better now about staying on Tysabri. I've tried all the other "popular" MS drugs except Copaxone. I even had 2 treatments of Novantrone in 2005. My heart's "MUGA" was not good after those 2 treatments, so that was enough for me. I've got a scooter to zip around the house in (yes, it's that big). I was feeling lots better in Feb. and "scooted" around too fast. This caused me to catch door frames with my back tires, jam to a halt, and fall over on the floor, still in the sitting position. This is a funny mental image, but I did this not once, but 3 times before I got the hint to "cool my jets". The falls caused no bruises, no broken bones, no blood clots. But a month later, I'm getting a "zinging" like lightning up and down the outside of my left leg (the first fall) whenever I put weight on that leg. My neurologist said yesterday that it sounds like a nerve problem, so in I go for an MRI. I've had many MRI's and I'm curious as to what it will show and what the treatment will be. The ER tried a splint on my leg, but I couldn't stand it for more than 12 hours and took it off. I'm trying the R(Rest) I(Ice) C(Compression) and E(Elevation) treatment, except not the C(Compression). It's helped. Bye for now.

Time keeps on slipping, slipping, slipping...

Hi again, I guess I must be feeling better, as I'm not hanging around on the 'Net, blogging as much as I used to. Even tho I'm housebound much of the time, I find so much to do & I'm extra-slow at it, because I have this handicap called MS. Just went for my 35th Tysabri treatment last week. I got nervous about staying on it for so long, so I went for a consult with a doctor who I consider to be a "Tysabri expert" (Dr. G. in the Phoenix area). He is on some Tysabri committe that meets regularly (drug-maker Biogen). He assured me that I don't have to worry about getting the fatal condition PML, as I have 1 in 6,000 chances of getting it. There is a risk of getting some deadly from Novantrone use (1 in 500), so he has taking ALL of his MS patient off of it. There are roughly 18,000 MS-ers who've been on Tysabri for 2 years, he has 42 MS patients on Tysabri right now. The average time for getting PML is when you've been on Tysabri for 11 - 17 months. So I feel better now about staying on Tysabri. I've tried all the other "popular" MS drugs except Copaxone. I even had 2 treatments of Novantrone in 2005. My heart's "MUGA" was not good after those 2 treatments, so that was enough for me. I've got a scooter to zip around the house in (yes, it's that big). I was feeling lots better in Feb. & "scooted" around too fast. This caused me to catch door frames with my back tires, jam to a halt, & fall over on the floor, still in the sitting position. This is a funny mental image, but I did this not once, but 3 times before I got the hint to "cool my jets". The falls caused no bruises, no broken bones, no blood clots. But a month later, I'm getting a "zinging" like lightning up & down the outside of my left leg (the first fall) whenever I put weight on that leg. My neurologist said yesterday that it sounds like a nerve problem, so in I go for an MRI. I've had many MRI's & I'm curious as to what it will show & what the treatment will be. The ER tried a splint on my leg, but I couldn't stand it for more than 12 hours & took it off. I'm trying the R(Rest) I(Ice) C(Compression) and E(Elevation) treatment, except not the C(Compression). It's helped. Bye for now.

A New Year, Lots of possibilities

Happy New Year to All-! Hope everyone is hanging in there--these days are so "down" because of our "troubled enconomy". I am sending out "good vibes" and wishes for the best in 2009. I have been "out of blogging" as my real life has twists & turns of its own. I continue to try different therapies for my old lower back injury, as I continue my Tysabri therapy for my MS. I will be getting my 32nd infusion of Tysabri this Wed. I haven't been having Big Surprises, but when I hear or read about all the different & awful things that MS people put up with, I am Happy about where I am Now. Take it one day at a time & keep hoping.