Let The Games Begin...

I had the day off from work today, so I spent much of my time making necessary preparations for my weekend STEROID PARTY. I start my three day course of IV steroids on Friday morning. Experience has taught me I must be PREPARED for these events or "bad" things can happen!

First...I went to the grocery store as you can see by the picture. Steroids make me ravenous. So much so I have resorted to eating things in the past I would not feed a rat only because I had no REAL food in my house! I'm still sporting the extra weight I put on from the last round of IV steroids, unfortunately...you'd think that would be enough of a deterrent to keep me from buying junk food, but it's not. And it wouldn't matter if I only bought myself "health food" anyway...I'd just order out for pizza in my daze!

Second...I've got my emergency contact lists printed out just in case I get a bit "loopy" on the roids. Loopy for me has meant anything from sleeplessness for 48 hours to blatant psychotic symptoms. I ALWAYS try to avoid this! And, after all, there ARE drugs that help...I have my bottles filled.

Third...I have a strange (or perhaps not so strange) habit of needing to clean my house whenever I am going to be gone on vacation OR whenever there is a small chance I might be rendered incapacitated. This avoids much embarrassment later on if caring friends (or medics) have to enter my home for any reason...there's no need for anyone to see my laundry basket full of worn undies! And, yes...my mother DID teach me to always put on the "draws" without the holes in them if there's a chance someone might see them, too.

Fourth...and let this be a lesson for everyone...ALWAYS and I mean always shave your legs BEFORE getting that first dose of IV roids if there's a chance you might get loopy, too. I nearly needed a blood transfusion last year when I tried to do this (mostly out of boredom) following a course of steroids that made me "loopy" and sleepless!

Fifth...I've got the Tootsie Pop suckers laying out and ready to go. IV Solumedrol givesme a wickedly nasty taste in my mouth during (and after, too) infusion. It IS important to pack enough to share with your infusion nurse, however. Somehow it's OK for them to have a sucker if you're slurping on one, too!

As usual, I'll try to document the "highly eventful" thoughts that seep through my mind while getting my ROID RAGE on! But just in case I miss a day or two (You think I type mindless blather now? You should hear me on steroids!), might I suggest a great blog read over at:

http://miss_suzy.typepad.com/my_weblog/

Suzy is always good for a laugh or a tear over at "Bliss"!

I'll be sending the canary into the mine shaft first thing tomorrow morning...wish me luck!

Progressive Multifocal Leukoencephalopathy...Try Saying THAT Ten Times Fast...

*%^*?@#+!!! Dammit, JIM!!! AOL (or AOHELL) just lost the blog I spent 2 1/2 hours writing this morning about PML...it WAS a good one, too!

I decided I should take some time and do a bit of research about PML since I so casually mentioned it in the article yesterday about the FDA returning TYSABRI to the market. In the blog you will never read now and I can NEVER recreate (thank you, AOL), I talked about what exactly PML is and why the FDA has their panties in a wad when it comes to TYSABRI and the possible development of Progressive Multifocal Leukoencephalopathy.

I DO know a bit about the disease because of past required study in HIV/AIDS progression. It's certainly not a newly known disorder...People with AIDS (about 5-6%) have developed PML in the course of their disease. Researchers have known about PML for a decade or so. Doctors know the virus that causes PML...they also know it is due to a severely suppressed immune system. They also know it is generally fatal.

I can't recreate the blog I already wrote...I have MS after all! My memory isn't great and I'm a bit fatigued already from earlier writing. Fortunately, I DID cut and paste some basic information into Microsoft Word and saved it with some links to web articles about PML...I did this just before AOHELL decided to have a server problem and lose everything I had already typed in my blog and HADN'T saved just yet!

This is the best I can do for now...you'll have to do a bit of your own research today for more information and if I become so moved to "try" to write about this topic again, you can KNOW I will definitely create it in a word processing program first! Do you suppose the powers that be from AOL will now report me to Homeland Security for my online negativity???

PML is a rare and usually fatal viral infection of the brain. Caused by the JC virus (the initials of the first patient from whom the virus was isolated), PML destroys the brain cells (oligondendrocytes) that produce the surrounding protective coating (myelin) of nerve cells.

The JC virus is common; by middle age approximately 80% of adults have been exposed to it. This virus doesn't cause disease in people with healthy immune systems. However, it remains dormant in the kidneys, bone marrow, or lymph nodes for may years. Researchers believe that once it is reactivated, the JC virus is carried to the brain by circulating B cells. As the words "progressive" and "multifocal" indicate, PML can progress very quickly and it is not confined to only one part of the brain.

PML causes lesions on the white matter of the brain. The symptoms experienced are directly related to the location and size of the lesions. Lack of coordination of an arm or leg, partial paralysis of one side, partial loss of vision, impairment of thought and speech patterns, memory problems, walking or standing difficulties and dementia are reported in most cases. Not all individuals with PML will necessarily experience the same symptoms or with the same intensity.


PML is similar to another demyelinating disease,

multiple sclerosis, but since it destroys the cells that produce myelin (unlike MS, in which myelin itself is attacked but can be replaced), it progresses much more quickly. Most patients die within four months of onset.
Symptoms of PML include mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and, ultimately, coma. In rare cases, seizures may occur.
There is no cure for PML, nor is there currently an effective treatment for the disorder. Treatment is symptomatic and supportive.
The course of PML is relentlessly progressive. Death usually occurs between 1 and 4 months after onset.


http://www.ninds.nih.gov/disorders/pml/pml.htm

http://en.wikipedia.org/wiki/Progressive_multifocal_leukoencephalopathy

http://www.healthlink.mcw.edu/article/921450160.html

http://content.nejm.org/cgi/content/short/353/4/369

WooHoo! Sound The Horns!!!!

The FDA just announced yesterday the agency has approved the return of TYSABRI to the market with restrictive use!!!!

httBiogen Idec - TYSABRI® (natalizumab) Information Centerp://www.fda.gov/cder/drug/infopage/natalizumab/RiskMAP.pdf

For those of us with Multiple Sclerosis, this is "mega big-ass" good news! I, for one, have been anxiously awaiting the FDA decision since the other disease modifying drugs have not been too friendly to me.

My neurologist (Dr. She Who Will Not Be Named) assured me the drug would return to the market...she sat on the bigwig advisory board that made the recommendation to the FDA. But because I suffer from a lack of faith, I had resigned myself to the idea she might simply be trying to amuse me by blowing smoke up my arse (so to speak)!

For those of you who are interested, I embedded some links to the FDA press release and the requirements patients and doctors must meet before the drug can be distributed...there's quite a list.

For those of you who just want a "hit" on what this is, I'll simplify it for you here:

Tysabri is a monoclonal antibody which had amazing results in slowing the progression of MS just prior to it being pulled from the market. It's an IV infusion given once a month (which beats the idea of daily, three times a week, or weekly self-administered shots...the current approved methods of treatment for MS). There was only one problem which resulted in its immediate withdrawal from the market last year...It may have killed a couple of people (but no one knows for sure) who developed PML or Progressive Multifocal Leukoencephalopathy, another deadly brain disease.

And as a reminder, there is no cure for MS, only drugs to help slow its progression. For those of us who had poor results from Copaxone or the Interferons, Tysabri represents a glimmer of hope. I'm not going to get all sentimental here and lapse into "hope" talk, however...just bring on the damn Tysabri and let's give it a whirl!!!

WOOHOO!

Darwin May Have Jumped The Gun...

I can go along with the idea there are a few evolutionary similarities between humans and apes, but Darwin never saw MY squirrels before posing his theory! I believe these little yard "varmits" are some of the smartest rodents on earth.

I have always enjoyed feeding the birds (and now the squirrels, too) and watching them flitter about outside my window. I have some of the fattest fowl in town frequenting my yard. I also have some of the best fed squirrels this side of the Rockies!

Over the years, I have tried all of the "deterrents" designed to keep these little rats with tails out of my precious bird feed. I have used squirrel hoods, Alcatraz-like steel containers, giving the squirrels their own feed, and even high-off-the-ground shepherd's poles. Trust me when I say none of these devices work...these squirrels are just too darned smart.

I watched a determined varmint just yesterday shimmy up a 6 foot shepherd's pole and hang precariously with its back feet gripping the one inch diameter pole while its mouth was buried in the feeder. I think even the birds flapped their wings in applause to witness this feat. It was truly amazing.

Today I finally had to call a truce with my little fluffy-tailed foes. I have nothing else left to try in keeping them off the bird feeders and in the trees where they belong. I've given up...they are obviously much smarter than I. They also are far more determined than I am...the squirrels win. They will eat freely and as often as they like from the smorgasbord of bird seed. I'm too tired to keep up the fight.

I DO admire their ingenuity however, when it comes to food. They've got their creative eating down to a science...and come to think of it, so do I! Maybe that's why I'm so tolerant of their behavior. I obviously have more in common with squirrels than I do with apes...

It's The Little Things...

I finally got around to replacing a sensor in the outside porch lamp of my duplex. I know this may not sound like a big deal to most, but it was a REALLY big deal to me!

First of all, I didn't know if it was even a possibility electrically to take apart the lamp and wire in a new sensor...I wasn't trained in electronics, except by trial and error experience. And I have had one too many "errors" in my experience, blowing out fuses, bulbs, and shocking the living hell out of myself on occasion. I wasn't exactly jumping up and down to take on this task. But I WAS too cheap to hire an electrician, so...

The sensor has been burned out now for weeks. Having no external door lighting has made keying the doors to unlock them a blinding event...one I'm sure Helen Keller would have been humored to observe had she been able to "see" my fumbling with the locks!

I've put off tackling this distasteful job for several reasons, but front and center on my list has been my need to pout in my MS. After all, the pain in my arms has seemed unbearable at times, my brain has had difficulty focusing on the simplest of directions, and frankly, I just DIDN'T WANT TO DO IT! That's right...I played the MS Card. I threw the MS Card gimpishly on the table as my excuse not to at least "try" to get this job done and I pouted my way out of it.

Today I was reminded I still am functional and CAN do many of the things I sometimes try to say I can't. The directions were a bit challenging to decipher, but the entire task didn't take more than 15 minutes once I figured out what I was trying to accomplish. My newly installed Dusk to Dawn light sensor is working now without flaw.

I've noticed lately I've been pretty quick to play the MS Card when I'm challenged. It's a nice excuse. It's a necessity at times when I need to say "no" and rest. But some of the time it is simply a means of saying, "I'm too scared to do that", without ever having to say the words out loud.

Thank goodness the Function Card trumps the MS Card on occasion or I'd never leave my house...

Keep Your Hands Inside The Moving Car At All Times...

Well, here we go again! WoooHooo! Another round of IV steroids...

I'm not sure who sold me my ticket on this wild ride called MS, but I think I'd like my money back. Nobody warned me about all the scary turns and the upside down spins. And even though I'm tall enough to ride this ride, I'd just like the operator to shut it down and let me off...it's made me dizzy and I think I may hurl my lunch!

I'm scheduled once again for another round of IV Solumedrol. It seems the MS has simply turned evil on me...it's eating away my brain at a rather rapid pace. Fortunately, aside from the constant pain I have in my upper trunk (which is ENOUGH of a problem), I haven't lost my eye sight, my ability to walk, the ability to control my own urination, or my sometimes "sick" sense of humor. I thought by now the humor part would have at least left me...some days I feel way too fatigued to think anything is funny.

I told my neurologist I didn't "have time" to be sick and I certainly don't "have time" to schedule another 3 doses of steroids. It's been suggested I "make time". So I made time at the end of my work week next week because I will start a six day furlow on Saturday...it was the best I could do, given my busy schedule! And, as I explained so eloquently to my neurologist, what difference will another seven days make REALLY? The damage is being done as I type or quite possibly even while I have slept this past month.

I'm sick of making time for Multiple Sclerosis in my life. I'm sick of it defining my life. Frankly, I'm just plain sick of it. I have things to do, places to go, stuff to attend to...MS will just have to take a back seat this week. Unfortunately, my MS is like a nasty back seat driver...it's been constantly nagging me and critiquing my navigation and steering. And just when I think I've finally got myself going down an open road, it reminds me of a dangerous "bridge out" just ahead.

I'm considering trying to stick MS in my trunk this week. At least until I get to the IV steroid portion of the drive. I suppose a little duct tape and some rope might help...I think I can ignore it for seven days back there. I just hope no well-wisher hears the pounding on the trunk lid and tries to let it out! I bet the fury of MS would really go after me then...

The Year Of The Slug...

I went to see a Chinese acupuncturist and herbalist today. After all, why should Western Medicine have a monopoly on my healthcare! Besides, I haven't exactly responded "favorably" to Western Medicine approaches, so I thought I'd try turning my body into a pin cushion as my next illusive pain remedy and possible treatment for my Multiple Sclerosis.

I actually did pretty well during the treatment, except when the doctor started sticking the needles into my forehead and scalp! This came as a bit of a shock. It stung a little also. I slowly relaxed into the treatment and imagined the needles in my scalp piercing an MS lesion and sending a bolt of lightening into the area. I don't know if my imagery helped or not, but I felt somewhat in control of my destiny for a few minutes.

My friend "E" convinced me to try this new approach...she practices Qi Gong on a regular basis and got me in to see her doctor immediately, who is also the Qi Gong Master she studies under. I was a bit skeptical at first in even making an appointment...after all, I work in Western Medicine healthcare and feel somewhat of a sense of loyalty to the medicine practiced on this side of the world. I had an epiphany however, when it dawned on me I am also skeptical of medical practices and medicines HERE in the USA! I realized I don't have high hopes or trust in ANY practice of medicine, so why not try something a bit more ancient than Prozac.

So far, I don't feel any difference in the pain level in my body today...my annoying friend is still here in my body trying to steal my joy. I have a $40.00 bag of Chinese herbs, which I have been instructed to take 3 times a day for "circulation and arthritis" (at least the herbs seem cheaper than Prozac). It appears even in China one has to remember to take their medicine throughout the day...I'm not keen about doing this in ANY country!

The doctor was nice enough. I didn't understand half of what he was saying because English is a second language to him and Chinese has never been spoken by these Germanic lips. But then again, I rarely understand half of what my English-speaking, American-trained physicians say either, so what's the difference? And this doctor's handwriting in Chinese looked vaguely familiar to some of the scribbles on prescription pads I have seen my American-trained physicians scrawl out.

Perhaps there really ARE more similarities in Eastern and Western medical philosophy than anyone would like to admit...

I'd Blame It On the Lyrica, But...

I've had a peculiar song running through my head today. I'd blame it on the new medication, Lyrica, but since I haven't even started taking it yet, I doubt it is responsible for my musical mind today.

Remember the song from childhood called, "Hole In My Bucket"? The words were something like, "There's a hole in my bucket, dear Liza, dear Liza. There's a hole in my bucket, dear Liza, a hole." I'd sing it for you now, but I'd probably crash your computer.

Today, that song has been sing-songing through my brain, only with the word "bucket" being replaced with the word, "noggin". That's right...There's a hole in my noggin, dear Liza, dear Liza. There's a hole in my noggin, dear Liza, a hole.

I went this morning for yet another MRI as follow up in the Rituxan Study I am participating in. Neither my study neurologist or I are supposed to know the results of any tests done in this study. And if the sponsoring drug company asks ME, I know nothing. Whatever...

My study neurologist "may have" pulled the MRI up immediately on the computer screen...we "may have" accidentally reviewed it together. I "may have" actually wished we hadn't.

New enhancing lesions. Not old ones currently inflamed. New enhancing lesions. The MS continues to roar through my brain. New enhancing lesions even SINCE my MRI the first part of May. There's a hole in my noggin, dear Liza, dear Liza...

Another email with Dr. She Who Will Not Be Named. An email back letting me know she has already spoken by phone with my study neurologist. Another round of IV steroids to schedule. There's a hole in my noggin, dear Liza, dear Liza...

I don't think dear Liza really gives a crap...