Saturday, August 26, 2006

Crashing All Around Me!

     Red Alert!!!  My computers are crashing all around me!!!  It has taken a good 45 minutes just to sign online and pull up my blog and I fear the worst is yet to laptop is now dying!!!

     The Geek Squad will be here next Saturday to mend the desktop...that's the soonest I could get them scheduled to repair my connectivity problem I have yet to fix since the first of the laptop is blinking out, so it may be a week or so before I can get back on board with BRAINCHEESE.  I will be able to check my emails at work (corporate "theft" is alive and well...that's what they call it when you use company supplies, etc., for personal use..."theft"), but won't be able to access this site for updates.  Maybe the laptop will have a change of heart, but it's not looking good right now...I think the internal fan has died and the hard drive is overheating.

     Best get this posted BEFORE it flashes the blue screen of death again!  Take care all and I'll be back soon...and by the way, Meha say's "hi".  She'd found her permanent napping place on my shoulder while I type this...more to follow with pictures, etc., after next Saturday!

Friday, August 25, 2006

Dream Weaver...I Believe We Can Reach The Morning Light...

     It was my Senior Prom theme..."Dream Weaver" of those good old late 70's kind of tunes, sung back in the days of carefree and frolic.  I awoke this morning with the song playing over and over in my head like a bad ear worm!

     I suppose the reason the song snuck into my consciousness was because I was laying in bed thinking about the dream I had just experienced.  With my newfound and increased fatigue from the TYSABRI, I have been sleeping a lot more and at a much greater depth of sleep than I have in months (or maybe even years?!?)...consequently, I have been more aware of my dreams or experiencing a dream state more often.

     Yesterday, I fell soundly asleep in the middle of the afternoon (again, very unlike me as I don't "nap" usually) and awoke from a disturbing dream  staring my neurologist!  Talk about a nightmare...she was, of course, unhappy with me about something, but it had nothing to do with my MS.  HAD it been about my MS, I would have had to consider the possibility the dream was REALITY!  LOL

     Then this morning, I awoke having a particular feeling of satisfaction and that all was right in my world.  This also is not my general feelings upon first awakening, so I was a bit puzzled.  I sensed there was a remnant of a recent dream swirling around in the grey matter recesses of my mind and I tried to recall it.

     What I remembered was a dream in which I was confronting a real person from my past who had harmed me...I won't go into details about the reality of the story, but suffice it to say, I have often had fantasies of this interaction taking place.  What I WILL say is, the real life drama consisted of someone deliberately and knowingly harming me and me "taking the high road" and not speaking my truth to this person...not confronting them because "I was the better person".  After my dream this morning, I'm now realizing my rationale was a grandiose load of crap!  I've been too afraid to confront this person in the here and now.  So...I did it in my dream.

     The subconscious has a unique and wonderful way of protecting creates an arena for working out (or suppressing) our most difficult life tasks.  The thing we most often forget however, is the subconscious is merely the laundry basket for the wash...the dirty clothes will continue to pile up in the basket until the owner finally takes responsibility and does the washing.  And if we choose to NEVER do the wash, the basket will overflow and make an intolerable mess in our minds.

     This particular piece of "dirty laundry" in my mind has been laying around in my mental basket for years's grown moldy and stinky over  much so, it's been causing a great stench in my brain.  My dream today was a reminder to "do some wash"...but the dream was also a wonderful instruction manual for how to "Git 'Er Done".

     In my dream, I clearly and concisely stated my feelings and did not allow the person to twist my my dream I was a powerful person who knew what was right and wrong and I would not take "no" for an answer.  In my dream I felt such a sense of relief to finally SAY the things that were weighing heavily on my chest.  In my dream I was awake, I still have these same thoughts and feelings and I am no longer fearful of what I must do.

     In my life, I am preparing to speak my truth about a matter I have long held tightly to my tightly, it has been constricting my breathing.  In my life, I will use the wisdoms discovered in my dream to "let go" of old feelings and hurts I no longer need to carry with me.  In my life, my dreams can free me from these things if I only choose to listen.

     Sing with me now..."Oooo dream weaver...I believe we can reach the morning li height!"  Oh come on now!  I know you remember this tune...

Thursday, August 24, 2006

Joint Pains...

     Ah...but not the kind in the picture!  I just threw that in for the "shock" value.

     My second day post TYSABRI infusion feels much like my first.  I DID sleep on and off most of the day yesterday, which is highly unusual for me...I'm just not a "napper" this extra-duty dozing came as quite a shock to me.  I'm really not sure why, however...I've suffered from insomnia for a solid two makes sense I might NEED a bit more REM time even without the TYSABRI.  LOL

     It appears my only noticeable untoward side effects currently from the TYSABRI is an increase in fatigue and this systemic joint pain.  By comparison to the Copaxone and Avonex side effects I experienced, this is a CAKE WALK!  I am hoping these issues will simply resolve themselves with time.  Dare I even hope they go away and I actually feel EVEN BETTER than I did pre-TYSABRI infusion?!?

     I am staying home from work yet another day today because of this joint IS making it a bit difficult to ambulate and remain upright for very long.  Fortunately, I made my employer aware of my infusion status, so I'm sure they were half expecting me to be off work a bit...I suppose I'll eventually find out their "expectations" when I return on Monday.

     So, as is typical, this medication is a "wait and see" game.  I have to wait and see if these new symptoms are specific to TYSABRI and whether they will remit in time as my body adjusts to its new monoclonal antibody infusion AKA protein adjustment.  I will have to wait and see if I begin to notice any improvement in my already established chronic symptoms of Multiple Sclerosis.  I will have to wait and see if this drug reduces my relapse events.  I'll have to wait and see if I can AFFORD TYSABRI on a continual basis (remember...I STILL have no idea what my out of pocket expense will be for the infusion site charge).  I'll have to wait and see on my next MRI if my noggin is still lighting up like a Christmas tree.

     Such is the nature of truly is a wait and see disease.  TYSABRI appears tofit right into that model.  Most of us with MS have a bit of difficulty tolerating that "wait and see" attitude however, and I'm no exception.  I wanted some results YESTERDAY and even three year's ago when I was diagnosed!

     For now, I'm stuck in my wait and see mode of recovery...if it weren't for these joint pains and fatigue right now, I cautiously "think" I'd be feeling pretty good.  I'm cautiously "hopeful" TYSABRI may slow my MS down.  I'd like to be able to say I just have NORMAL aging pains for once...

Wednesday, August 23, 2006

It's In...

     Infusion complete...TYSABRI on board.  Maybe I should get one of those cutesy little "Baby On Board" signs for my car and alter it to say "TYSABRI"...of course no one but me would get the irony.

     Infusion day went off without much fanfare.  Saint EB, in her highly insistent way, picked me up yesterday and drove me to Dr. She Who Will Not Be Named office.  I was prepared...I carried a box of cupcakes for the staff, knowing it is ALWAYS proper etiquette to feed the hands who might kill me.

     The office was somewhat disorganized.  Dr. SWWNBN was flying down the hallways on her rocket-propelled heels, darting in and out of doorways.  I was placed in what they are calling the "Procedure Room", which I later discovered only days earlier, had been a storage closet!

     There was already another woman in the room with her friend...her infusion was already underway and she didn't look distressed or near death, so I breathed a sigh of relief.  As it turned out, she was from Texas and her friend from Oklahoma, so naturally I dusted off my southern drawl and chatted it up...the room soon turned into an off-stage comedy zone of swapping funny MS war stories and such.  We almost forgot we were sitting in a now defunct storage closet.

     The infusion nurse turned out to be someone I recognized from my work...never a good sign usually.  But we managed to get past THAT connection and she fired up my bag of TYSABRI.  The very expensive bag of liquid was soon pulsing through my veins.

     The only vague symptom I developed was a minor headache at first, but nothing horrible.  As the afternoon wore on, I did start to feel very tired, but no other nasty side effects.  Dr SWWNBN flit like a mosquito in and out of the room, tossing insults in my direction at every opportunity...I fired back...this interaction is how we both know we are tolerating each other.  Sort of like two kids on an intellectual playground's one of the things I like about her in a rather twisted way!

     Eventually my multi-thousand dollar infusion drained itself into my arm and that part was over.  Then there was the post infusion "wait" hour of monitoring me to make sure I didn't grow 2 heads and a tail (although the tail was secretly poking me in the back, I didn't let on it was even there).  Then Dr. SWWNBN made her final dramatic appearance and did a neuro eval on me, chastising my blatant non-compliance to most of her medical suggestions.

     "Why is your leg moving like that?", she says in a bit of a motherly, yet condescending tone.

     "Because", I say, "it wants to".

     We proceed to spar about her need to throw more pills at me to "fix" these ongoing MS symptoms and my continual refusal to SWALLOW any more pills.  We settled on a compromise that she would refer me to a neuro-opthamologist for my visual disturbance...I took the piece of paper and I'm sure she felt "helpful"...still don't know if I'll call this new doctor's office or not, however!  Oh, to be soooo non-compliant!

     Saint EB trooped through the entirely boring afternoon as though she might be enjoying herself...only flinching when the poke of the IV needle occurred.  She then took me out to get something to eat for supper as we were BOTH famished from our long day in the storage closet...4 hours was/is a long time to be cooped up anywhere, unless it is in my bed asleep!

     By the time we finished supper, I could feel the fatigue factor rising to an all new level.  I could barely lift my limbs and I felt as if I needed a nap before I could even go to bed to sleep!  I proceeded to lounge on my couch for another 4 hours and drool.

     When I finally decided I really SHOULD retire to my bed, my legs had begun to feel like solid lead pipes and it felt like a growing effort to breath.  I DID make it to the bedroom and collapsed into a much needed sleep...with the help of chemistry, of course!  I took some sleep aids to make certain I didn't doze for 3 hours and then wake up exhausted.

     Little did I know that after a near 7 hour full-court press sleep, I would STILL wake up feeling exhausted!  Every joint in my body feels mysteriously like someone has injected lead into legs feel extremely heavy as do my arms...and it's hard to walk today.  My mind seems "slow" and I have a sense this is most likely a side effect from the TYSABRI.

     I tried to wake up enough and move about enough to test my wings and hopefully go to work today...but as the early morning wore on, I knew this was most likely a futile desire.  I can barely hold myself upright, let alone consider making life or death decisions for another human being...I called in "sick" to work around 8:45AM and plan to just lay low and "rest" as best as I can today.

     I'm really hoping this fatigue/joint heaviness is just some sort of infusion reaction that will pass quickly.  I am still amazed this seems to be the ONLY undesirable side effect I am experiencing...and I am VERY HAPPY if this turns out to be the case.

     I have been laying here in bed this morning imagining the TYSABRI swirling around inside my blood stream, attaching itself to my out of control T-Cells, and taking them as hostages.  It's not a bad image...I really, really want this drug to have some kind of positive effect for me.  I really, really want to get some semblance of my life back.  I really, really want to be a statistical MS success story...after all, is that REALLY too much to ask???

Tuesday, August 22, 2006


       Clear my calendar and hold my calls...I'm goin' in.  I'll let you know how things turn out after the infusion...

Monday, August 21, 2006

Sunday Paper Want Ads:

     WANTED:  Neurotic Pet Owner seeks adorable kitten to cohabit in luxurious Seattle home.  Must be litter-box trained, purr like an engine, and enjoy long, winter nights of cuddling.  Feral cats need not apply.

      I had visitation again with my newly adopted feline on Sunday.  She still has to go on Tuesday to have her kitty hysterectomy, then she will come to live with me on Friday.  I'm really very excited to bring my little friend home!

     I've got everything a cat could want stockpiled in my place...there's a scratching post, the litter box, food, too many toys to count, a bed, brushes, nail trimmer, mats, did I mention toys?  There's not much she could want for when she arrives, except perhaps her sister, two brothers, and her biological mother.

     I noticed today during my visitation that kitty is a bit "slow"...she doesn't play like her siblings and is very hesitant to join in their rough-housing.  She likes to be held, cuddled, and scratched instead of chasing toys around the room and will run and hide if her bigger brother comes after her.  We had a moment today while I was watching her sibs dart and play...she just sat on my lap and purred that wonderful and contented sound, all the while looking up at me.  She's definitely MY kitty!  Or I'm HER companion is probably closer to the truth.

     I really haven't been this excited about anything coming to live with me in a very long time...usually, I've been more excited to see "things" go (implication of relationships gone bad here).  It will be nice to have something happy to see me when I come home (again, implication of relationships gone bad) and also someone to be responsible to (when it's an animal, I don't MIND's "people" I dislike taking care of!).

     I think I've settled on a name for kitty.  I say "think" because anything is subject to change.  I think I'm going to call her, "Meha", which is a bastardization of Spanish for "mi' heja", which means, "my daughter" or "my little girl".  Let's face it...I lived in Texas and it's what Texans do...we butcher the Spanish language (however most Texans CAN pronounce "nuclear" correctly)!  I DO appreciate Suzy's suggestion of naming her "Bailey" though...I just think liquor with that name, so I'm shying away from it. LOL

     So, little Meha will be gracing my home sometime on Friday evening hopefully...I do hope she likes the place and isn't too put out by my choice in decor.  I hope she hasn't had a chance to peruse "Martha Stewart's Living" magazine...she'll be sorely disappointed if she has...I may have to use that magazine to line her litter box...

Sunday, August 20, 2006

Stop The Insanity...Or At Least Stop My Whining!

     OK...I've been doing some blog "whining and dining" lately, except the meal I've been eating has probably been crow!

     Shortly after yesterday's blog was posted about my numerous aches and pains, I received a concerned and caring email from my friend, Joyce, hoping I was doing all right.  Then I read Suzy's post on and she's taken to praying for me!  I have somehow managed to set off a 3 state alarm of concern...

     Now, don't get me wrong...everything IN my posts are true to the best of my knowledge and particularly when the information is about "moi".  And I HAVE been unusually (of course that's not a great choice of words really) aching and pained since this Spring/heat of summer/work week/progressing MS.  But I've realized I need to be more careful of the words I choose when I spew my condition in print..."all y'all" (that's Texan for "you guys") who drudge through my postings of monotonous blather deserve to be entertained and informed and NOT feeling like you need to set up an emergency prayer circle to heal me or ask for forgiveness for my heathen soul!

     Please understand I am very grateful to have such wonderful friends and readers and your concerns are heartfelt and touching...I am very fortunate to have met each of you, either via blog comment, email, or phone.  But for the record, I'm not dying...probably not even close to death (can't rule out accidents, so I'll remain cautious)...and my rants and whines are just that...whatever is on my mind at the time.

     I tend to be a somewhat "dramatic presenter" (one could worry about psychiatric diagnoses here) and I enjoy writing colorful and descriptive things.  So if I feel bad, I write about it and, if I feel good, I write about that, too.  Yesterday was a "feel bad" kind of day.

     In an effort to redeem myself in blog, I have decided I MUST write today about the things I feel good about or am thankful for...gotta counter balance yesterday's spew!  And also to let all y'all know I'm really doing OK...I have MS and that's not going away, but I do have things in my life which are great blessings.  Here's my top ten list:

10.  I still have all my limbs, teeth, organs (minus appendix and gallbladder, but who needs those anyway?).

 9.  I have a sense of humor that most likely was passed on to me by a is a gift to be able to see the "fun" and silliness of the world around me.

 8.  I have some of the most caring, knowledgeable, and professional practitioners looking after my health...from a gifted therapist to a brilliant neurologist.

 7.  I still have control of my bodily functions, ie., bladder, bowel, speech, etc. (unless of course someone scares the crap or pee out of me!)

 6.  I live in Seattle, WA, one of the most beautiful cities in the world (must throw in a proud "Neener neener" here, unless you also live in Seattle...then it's a high five slap)

 5.  I have an adorable kitten coming to live with me (she really IS cute...see previous post 3ish days ago for pics)

 4.  I own my own car and home...assets I am pleased to have (never thought I'd be bound to a mortgage in my entire's a "good thing", right?!?).

 3.  I can still walk with only occasional need of assistance, either via wall or cane!  (Please see #9 and combine 3 with it...keeps me laughing)

 2.  I have a job I enjoy (most days) and enough money to meet my financial needs (but there is that beach house I've been thinking about...hmmm....)

 1.  I have wonderful and caring friends like YOU who cheer me on through the good, the bad, and the not so pretty (and that not so pretty would be yesterday's post!)

Whew...I made I'll shut my pie hole for a change... 

Saturday, August 19, 2006

Some Days It Just Doesn't Pay...

     One of my coworkers likes to tell the story of his encounter with a particular psychiatric patient who was being detained...somewhere in the course of his interview with them, the person stated, "You know, some days it just doesn't pay to chew through the leather restraints".

     By now this story has become urban legend in our office, but it IS a useful statement to describe my week...I feel as if I've been gnawing away at something holding me down, only to be "kept" in the place anyway!  In other words, I've been putting in a lot of effort to free myself, which has become the very thing that has caused me to stay stuck here!

     I have made it through my long work week of 50 hours, but not without consequences.  I'M DOG TIRED NOW.  I'm irritable (or at least more so than usual).  My body aches.  My fatigue feels overwhelming.  I feel listless.  My vision is "funky" to say the least.  And my legs ache with that deep nervish pain.  It certainly has not paid for me to chew through my leather restraints this week.

     I have also unfortunately filled my weekend with all of the things I can't get done during the week when I'm working every day.  I have to go to the Animal Shelter and turn in the papers to adopt Little Miss Runt so she can have her surgery this coming week and I can bring her home next weekend.  I have a 60th birthday party to attend today of a's somewhat of a can't miss ordeal as a means of paying my respects.  Another friend is taking ME to supper tomorrow for my belated can I possibly say "no" to that?  And there are the usual "ToDo" items on my list of household chores to complete for the start of a four day work week on Monday...throw in my first Tysabri infusion on Tuesday, and I believe I've got the makings of a "perfect storm"! LOL

     For a "normal" person, this list would seem hardly a burden at all...perhaps even a bit mundane.  But for me in my current health, this list feels overwhelming.  It's true that everything on the list is something NOT mandatory...certainly not as pressing as say, death or taxes.  But the things on my listare all things I WANT to be able to do for various reasons and it is disturbing to me to feel this level of fatigue weighing me down.  It is difficult for me to accept I may have to pick and choose to do the things of greatest importance and leave the rest behind.

     Ah, the joys of Multiple Sclerosis...MS certainly has a way of interjecting itself onto the "fun" list doesn't it?  It has a way of robbing the core of our being...our ABILITY to be and behave how we once were.  I don't think it's fair to call it "apathy"...I don't FEEL apathetic toward my tasks, I just lack the energy and ability to complete them.  I WANT to be able to do all of the things on my list, but I know the cold reality is, I'm going to have to cut a few items as a compromise to MS.  If I don't, the lovely MS will do it FOR me and its choice may not be my choice!

     So, I'm rolling out of bed in a few minutes to take a shower and get myself together to go adopt Little Miss Runt...that's a "have to" item.  I'm NOT going to bake or cook anything for Flipper's party (coworker), even though I did commit myself to this task (crossing off the expectant baked beans and party items I was bringing).  I WILL pay my bills tomorrow and wash clothes...gotta do that.  The rest of my home will remain looking like a war zone.  I WILL meet my friend for supper tomorrow's a free meal!  And I will try ever so diligently to be in bed at a decent hour to try to combat this horrible insomnia and fatigue.

     I suppose that restructured list does free me up some now to rest a bit...either that, or it gives me more time to chew on my restraints...

Friday, August 18, 2006


     Since I seem to be in a "Battle of the Blog" with my friend, Mdmhvonpa, over who can sneak in the funniest movie lines via blog post (and yes, I DID get your latest Beavis & Butthead remark in the previous post comment section!), I decided "Game On" was the best title for this's from a scene in the Movie, "Wayne's World"'ll just have to rent the movie to follow along.

     But as far as TYSABRI goes, it does appear we are now "game on" with the process.  After my lengthy calls earlier in the week and frustrating responses, it seems someone (most likely the Mafia Pharmaceutical Company) has nudged my insurance company to get the liquid gold out to my neurologist's office next week...I'm once again scheduled for my first infusion on Tuesday.

     I still do not know the FINAL cost for each infusion...I've gotten the quote from the pharmacy portion of my insurance:  $50.00 per vial.  But I can't seem to get even an estimate of my costs for the infusion site...all my Mega-Conglomerate Insurance Company will tell me is, "Your cost will be 10%".

     OK...I CAN do simple math...ten dollars on one hundred dollars on one thousand...but I can't even BEGIN to estimate how many hundreds or thousands of dollars this TOTAL cost will be!  It seems it will remain a mystery until I get that first bill and die of cardiac arrest when I open need to worry the MS might kill me...I'm sure my neurologist's billing department has dibs on my death before Multiple Sclerosis does.

     So, I'm all set for my newest line of MS treatment.  I've been flexing my veins in preparation for the IV.  Dr. She Who Will Not Be Named has already informed me she is "dulling down the needle and spitting on it twice"...a direct email quote(ours is an interesting relationship!).  I'm planning to take treats for everyone in the office, but never hurts to feed those who might kill you!

     In the famous words of Garth (yep, yet another WW movie reference), "I fear change", but I AM hoping TYSABRI may make changes for the better in my life.  I am hopeful the drug may slow this "aggressive MS" I have developed this Spring and return the quality of life I had prior to February.  At the very least, I am hoping the "change" may come in halting the progression of my MS, even if nothing improves from today forward.

     There are a lot of things I don't do well in my life...I don't "do" math well, can't really sing well, don't sculpt well, don't do foreign languages well, don't play hockey well, and I really don't DO DISABILITY well.  I hope I do well making the "right" healthcare decisions for myself, however...

Thursday, August 17, 2006

Must Be The MS Weather...

     After reading the "titillating" news (yes, Mdmhvonpa...I found your use of the word "titillating" in your blog  so titillating, I just HAD to borrow!) in the national cesspool of news regarding the recent developments of the "JonBenet" murder 10 years ago, I proceeded to check in with my regular MS bloggers to see what "titillating" news they might be sharing.  It appears we are all under the MS Weather right now...

     Dear Mdmhvonpa (you already got his link), Jaime at , and even Suzy at are all experiencing some sort of relapse/sickness/symptoms/crap of their Multiple Sclerosis.  Dare I throw my name carelessly into that pot as well?

     I've been feeling a bit of "dropsy" coming on myself this past week...that's my term I like to use for these MS symptoms that come and go or come and stay!  Several days ago I had the crushing calf pains, which have now settled into a return of restless leg syndrome in my ever so compromised left leg...I'm having the "I can't seem to keep this leg still or comfortable" symptom.  There's really no other clear way to describe it, except to say two words:  It Sucks.

     My fatigue has also been royally kicking my butt for a few weeks now.  It certainly doesn't help that I have had a return of insomnia on top of it.  It's actually hard to tell which came first:  The chicken or the egg theory.  The insomnia, then the fatigue or the fatigue, then the insomnia.  Last night (or should I say early this morning) was a real EYE OPENER!  I could NOT fall asleep, no matter what my interventions...I think I finally drifted off some time around 5:00AM, only to awaken at 8:30AM.

     But while I'm whining publicly and perhaps even "bitching", let me also add my visual disturbance I awoke with today on top of my stack of complaints!  I've got that weird "things are blurry because they seem too clear" vision.  I'm sure it's just because my eyes are so tired...whatever the cause, it's quite annoying.  I don't know if any of you have ever experienced this type of visual disturbance or not (and I'd LOVE to know it if you have!)'s like certain colors are more vivid, while my visual field is somewhat blurred at the same time.  I'd attribute it to LSD or speed (Timothy Leary would be so proud with my "Oooh, the colors" reference), but since I've NEVER done those drugs, I can only assume it's the MS.

     I have never found any profound studies about the timing of MS symptoms in correlation with weather or geography or season, but I'm starting to believe from my own experience (and that of other MSers) there is something to it...we DO seem to experience flares/relapses/symptoms in relationship to each other...not unlike women who synchronize there menstrual cycles when they live or work closely together (No fears, WON'T start having periods because of reading the girls' blogs!).

     I don't have any proof it's the weather or the season causing this.  All I can say is, I do hope this CLOUD of MS passes soon for us all...

Wednesday, August 16, 2006

Swinging From The Branches Of A Phone Tree...

     "Press 1 if you'd like to remain on hold for another 15 minutes...Press 2 if you'd like to be transferred to the janitor's closet...Press 3 if you'd like to speak to someone dumber than you...Press 4 so we can automatically lose your call in our phone tree system, causing you to repeatedly redial, and eventually giving up your cause all together."

     Yesterday, I spent nearly TWO hours dangling from the branches of my insurance company's phonetree.  It wasn't pretty...I lost my patience...there was eventual gnashing of teeth.

     It's the TYSABRI saga.  You know the one...the story of having an infusion scheduled last week, only to find out my insurance company had yet to even be contacted, let alone APPROVE the drug.

     On Monday, I called my neurologist's office back (promptly returning a phone call I had received from her nurse on Friday) and the office, once again, wanted to schedule my first Tysabri infusion.  Being the ever-diligent consumer that I am, I inquired about my insurance approval.  After much shuffling of paper and difficult-to-answer questions from me, it was soon discovered I STILL did not have appropriate insurance authorization for infusion.

     I worked briefly in the insurance industry in the 80's as a reviewer, so I'm fully aware of the amount and size of fire required under a reviewer's butt to get them to move.  I told my neuro's office I, as the CONSUMER, would begin the nagging process in an effort to "fan the flames" so to speak.

     Tuesday morning began with my usual foggy-fatigue feeling, but I managed to roll like a log out of bed, stumble to the bathroom, and grab the ever-powerful phone to begin my CONSUMER INVESTIGATION into my Tysabri problem.  I first dialed my prescription drug coverage company...their "hold" music was less than desirable, but I maintained.

     The prescription drug department eventually passed me off to two other departments WITHIN their department and I finally got a very nice youngman who dialed my neuro's office and spoke with the nurse directly while leaving me on a 10 minute hold.  He returned to the line, telling me he had obtained information from my doctor's office directly, and gave me another number to call--"the regional pharmacy that will be handling your medication"--and advised me to call them for benefit information.

     I decided to go ahead and make some more calls to find out exactly what my out-of-pocket expense was going to be for these infusions...after all, money doesn't grow on trees where I live...only phone receivers...and it is important to me to know my costs up front so I can be sure to apply for a second night job if needed to cover the cost of my Multiple Sclerosis medications!!!

     What a mistake THIS turned out to be.  I first called my Mega-Insurance-Conglomerate Company who handles the claims for my Self-Insured Government Employer.  It is obvious I will incur TWO charges for these infusions...the medical cost of the infusion center, IV, nurse, etc. and a separate charge for the TYSABRI...this really didn't seem on the surface to be rocket science or some kind of top secret government cover up.  Ah, but I am learning, Little Grasshopper...

     My medical insurance coverage representative, who I'll call Bitchy Customer Service Rep #1, became immediately confused by my questions and passed me off to Bitchy Customer Rep #2 in the Specialty Pharmacy Coverage Department.  BCR2 passed me back to BCR1 because the Specialty Pharmacy was not going to be handling this particular drug...Biogen Idec (the Mega-Pharmo-Drug Company Maker of TYSABRI) holds the reins and controls over TYSABRI and I would need to speak directly to them, papers would need to be faxed, and THEN "someone" might be able to help me.  I explained my previous conversations and the fact this had already taken place...I requested BCR2 to check my records more closely.  She instead, transferred me back to BCR1.

     BCR1 had now realized I was NOT going to go away easily, so she gave me two other numbers to call, mumbling something about my pharmacy coverage not being available information via my medical coverage...I was nowDEEP in the insurance run around and swinging from branch to branch of the never-ending phone tree.

     I called both of the numbers I had been was an accounting department and the other took me back to the original pharmacy representative I had spoken to well over an hour before my latest call.  I called BCR1 back and demanded to speak to her supervisor...BCR1 Supervisor was even less helpful than seems the "Peter Principle" runs rampant in the insurance industry also.

     I eventually called back to my neurologist's office and spoke with her nurse...the plan NOW is to get back "in touch" with the TOUCH Program at Biogen Idec to see if THEY can resolve this run around process...after all, they want to SELL their drug!  Let the people with more money, power, and time than God work on this process...The drug company.

     My arms are very tired from my phonetree "swinging" of yesterday and I still know nothing more than I did at 9:00AM Tuesday...I've let everyone know there will be NO infusion of TYSABRI until I have been made aware of my out of pocket expense...debilitating disease or not.  I live in Seattle, but I'm no friend of Bill Gates and I doubt neither Biogen Idec or my neurologist's office is going to suddenly "slash prices" just to move inventory...such is life...


Tuesday, August 15, 2006

Trying To Promote A Better Sleep Hygiene...

     As some of you may have noticed, my blog entries are often posted quite late at night (or early morning for those of you who actually ARE morning people) and you've read how variable my work hours are.  I am often up until the wee hours of the morning with difficulty sleeping more than 4-6 hours/night...I am usually fatigued EVERY day and/or tired.

     So, I've made a commitment to myself to try to clean up my sleep act these days.  I'm going to try to practice a better "sleep hygiene".

     I don't know why the sleep specialists refer to the process of getting and staying asleep as "sleep hygiene" almost makes it sound like something is dirty and needs to be washed!  It certainly has become a catch phrase in the up and coming practice of sleep medicine...a practice that has become a multi-million dollar health concern.

     Three years ago, I underwent the overnight stay at the Sleep Lab and got connected to about a hundred different wires and leads while a camera and a technician watched me "sleep" all night long.  The result of this study informed my doctor I suffered from Obstructive Sleep Apnea and also Periodic Leg lay man's terms, I snore loudly and my legs dart about the bed!  I am a very "busy" sleeper...

     Since being diagnosed with Multiple Sclerosis in 2003, I have also suffered through sometimes debilitating fatigue.  Not only does my body feel TIRED, but I am also literally exhausted by the end of my day.  I have tried a plethora of medications, a CPAP machine (positive airway pressure device that is supposed to keep one's airway open and prevent snoring), and have read most of the literature out there on sleep disorders...bottom line is, I'm STILL TIRED.

     One of the "dirtiest" little problems with my sleep hygiene is my inability to set a normal pattern for going to bed...I always think there's just one more thing I need to do before I lay down, one more blog entry I need to write, one more TV show I should mindlessly stare at, one more phone call to make.  I am worse than a five year old accepting my bedtime!

     So, this week I'm turning over a new leaf...I'm washing behind my sleep ears...I'm practicing what I preach to clients...I'm gonna GO TO BED LIKE A RELATIVELY NORMAL PERSON!

     I often don't even get home from work until midnight (on a good day), but have decided I must set a standard time for hitting the hay, whether I feel tired or not.  I think it's reasonable to believe I can be in bed by 1:00AM.  As you can already see by the posting time of this entry, it's now 2:00AM!

     So I'm shutting down the computer, I'm going to try to remember no caffeine after 6:00PM, I'm going to attempt to have a bedtime routine, and I'm going to try to get a handle on this more machines or's between me and my sheets now.  I'm going to try to get some productive Z's...G'nite...I'm trying to sleep tight and not let the bedbugs bite (or at least keep the fatigue from biting my arse!).

Sunday, August 13, 2006

I'm Expecting!!!

     A kitten, that is!  Please feel free (I really mean DO IT!) to scroll through the pictures at the left of my expectant baby...

     Since I have now turned 42 and somewhere along the way forgot to have children (you're really NOT buying that, are you?), I decided it was time to have another pet in my life.  I have debated this decision in my head and heart for several months now and, just this week, gave myself the "go" to adopt.

     My original choice of a pet was a small dog.  But because of my crazy work schedule and little time I actually have at home, I made the most conscientious choice to NOT bring this type of vulnerable animal into my would not, after all, be fair to a small dog who would be needing much attention, potty breaks, and daily walks.  In saunters Miss Kitty...

     One of my coworkers (who, by the way, is a much better person than I!) does foster parenting for the local animal shelter.  She takes in cats of all ages and nurtures them until someone decides to adopt them.  She takes on the hard to adopt cats...the special needs cats...the behaviorally disturbed feline...and an assortment of other kitty medical ailments.  She nurses them back to health, starts IVs on them when they need fluids, gives them insulin, force feeds them, and any other type of care they might need just to survive.  As I said, she really IS a much better person than I!

     Because of my MS and particularly this last lengthy relapse, I had pretty much put the idea of bringing a cat into my home on my back mental burner.  I had many fears of being "inadequate" for such a small animal...what if I couldn't get out to get litter or food or take kitty to the vet if needed?  What if I became so ill I could barely fend for myself, let alone a dependent creature?  What if kitty tripped me in one of my stumbling ambulatory periods and I fell or, worse yet, fell on kitty?  MS fears were ruling my life.

     My coworker, who I'll call NBF, continued to be persistent with me.  She told me a few weeks ago she had just taken in a mother cat and her four, very tiny kittens.  She felt one of these kittens would be perfect for me.  I, of course, balked.  MS fear reared its ugly head...I told her I was afraid.

     NBF then got to talking with other coworkers about the idea of ME adopting one of the kittens...people started coming out of the woodwork like roaches to offer their support and "help" should I need it for things like cat runs to the store, etc.  They jokingly made it clear they would NOT go to the store for ME, but would graciously do so for kitty if needed!  LOL  I decided to just "take a look" at the little "mewers" in person.

     I went to NBF's home earlier in the week, not expecting much of anything, except to see four, cute little kittens.  NBF had already decided (and brought me a picture) one of the female kittens was just "purrfect" for me.  And, kitty number 1 was definitely beautiful.

     I spent quite a bit of time with the little balls of fur and held and petted kitty number 1, all the while watching the runt of the litter.  Little Miss Runt at first appeared a bit "touched" in the head...she seemed very timid and shy for a kitten and mostly watched her siblings play and dart about the room.  She was quite a bit smaller than the other three brutes and seemed to be mostly entertained playing by herself.  She just didn't appear to know "how" to manage the play and frolicking of her siblings.

     I kept watching Little Miss Runt and was fascinated by her shyness...she appeared to be learning from her siblings and would occasionally attempt to jump in to their heavy play, only to be swiped at by her much larger brother.  I decided to pick her up and hold her and that's when I heard it.  She purred like an engine.

     Little Miss Runt was the only kitten who purred when I held them...she was the only kitten who showed much interest in my presence at all!  She snuggled up in my arms and just purred a delightful sound...I was hooked.

    So, Little Miss Runt will be joining my household just as soon as she is well enough to head back to the clinic for her mandatory adoption's the shelter after all...they're trying to PREVENT more potential unwanted cats on the planet.  I'm hoping she will be well enough by the end of this week to undergo her traumatic surgery and transfer to my home...I really am excited about her coming to live with me!

     MS did not win this time and for that I am happy.  It will be so wonderful to have another living creature in my home besides my pampered plants...they really don't offer much companionship either, even though I DO talk to them!  And I am confident I will be able to manage Little Miss Runt with or without the help of my caring friends...good grief...I already bought her $150.00 dollars of supplies today!

     I can't continue to call her Little Miss Runt, however...she WILL need a much more appropriate name.  Got any suggestions?  Leave me a comment if something "profound" comes to you or fire an email to me at .  I look forward to reading your ideas...

Saturday, August 12, 2006

Fecal Fest 2006...

     Yesterday was a highly "sheety" day...crappy, if you will.  And this morning I find myself just plain exhausted and "pooped".

     I awoke early enough in the morning to take my last swigs of water before placing myself on the two hour NPO (nothing by mouth) restriction the radiology department had put me on for my specialized CT scan.  Two hours before this test, I was instructed not to eat or drink anything in preparation for the panoramic pictures that were about to be taken of my upper GI and small intestine.  I was quite pleased for the time being that there were no enemas, no Fleets to drink, and no real preparation at all, except to keep things out of my mouth.  Little was I aware of what was to follow.

     I think my overwhelming medical joy of "no prep status" in the Gut Doctor's office earlier in the week caused me to have a lapse in judgment...I didn't even ASK any questions about what to expect of the test or what was going to happen once I got there.  All I knew was it was a "non-invasive" exam...that meant no swallowing of tiny cameras and nothing inserted into any holes in my body that wouldn't fit there.

     I arrived at the radiology department and was greeted by kind and smiling staff who, at the time, seemed unusually pleasant and helpful.  The waiting area was calm and peaceful and I was immediately lulled into a state of complacency...finally a medical test that felt "right"...I'd be able to waltz out of this Medical Mecca in two hours and return to work without a care in the world.  I was lulled into a stupidity state.

     Young John, who looked to be somewhere between 12 and shaving age, emerged from the "back" (I was soon to learn this radiology department covered an entire 9th floor of a large medical complex, stretching over nearly 1/4 a city block, and had deeper bowels and chambers in the "back" than I was carrying in my own intestines!) and greeted me warmly in the mirage waiting area.  He was carrying a large, 500ml container of fluid and instructed me to drink the entire contents over the next twenty minutes.  I inquired as to WHAT it was I would be drinking and he quietly whispered, "Barium", as if the solution was some secretive radioactive substance.

     I nonchalantly whispered back, "So, I'm here for a Barium swallow test, huh?"  After all, I DO have some medical knowledge of exams...that's usually why one would be asked to chug Barium.

     "Not exactly", he whispers again.  "You're going to have to drink 3 of these containers over the course of the next hour so we can see your insides and you're also going to have an IV so we can give you another contrast.  It's a specialized CT scan".  I was now growing a bit uneasy by his soft tone.

     "What exactly is the name of this test I am having?", I say loudly to Young John, breaking the quiet hum of the musack/elevator-type music flowing from hidden speakers overhead.

     Young John seems startled by my abruptness, but continues in his whispering tone, "It's a specialized radiology tomography.  They'll tell you more about it when you get in The Back."  It was clear to me he didn't know why I was there and he was only the "messenger" of bad tidings...don't shoot the messenger.

     "So, I'll be back in twenty minutes with another one of these (the 500ml container filled with nasty-sweet smelling goo I was instructed to "chug" over the next few minutes of time).  Be sure to drink all of it", he says to me, as if sensing I might have a history of noncompliance with the medical establishment.

     I smile a fake smile of thanks and begin drinking the runny goo in the container.  It tastes like candied crap, so I decide actual CHUGGING of it would be the best option and tried not to take a breath in the process...breathing only increases the revolt of the taste buds.

     In twenty minutes, like clock work, Young John returns with yet another quart of his goo.  He inquires if I drank the entire container and I shoot him a condescending smile.  "Of course", I say rather flippantly.  "Bring on the rest."  It had now become a challenge for me to chug 1500ml of goo without vomiting.

     The second quart goes down with even less ease than the first, but shortly after this breathless chug, I am summoned into the "back".  The "back", I soon discover, has more hallways and doorways than a co-ed's huge.  I silently declare myself lost after the first series of twists and turns as I follow Young John like a beaten puppy to the CT area.

     Once in the remote area of the CT scanner, I am instructed to peel off all my clothes, except my shoes and socks, and tie a tiny gown obviously stolen from the pediatric ward around my girth.  My only saving of face at this point was to note several other "duped" patients seated in another room looking just as distraught by the clothing option as I was.  I complied.

     The seating area of the CT waiting room was the place IVs were started...I got mine shoved into a vein, but not without escaping a comment from the technician that my right forearm was developing scar tissue around my anti-cubital area.  I casually replied, "Oh, that's from heroin abuse", and let the comment slid by.  There was, unfortunately no inquiry from the technician or ability for me to explain the scar tissue is from far too many IVs and lab draws being plunged into my arm over the past several months!  He walked away without even so much as a smile...I was now beginning to miss the simpleness of Young John.

     A new and middle-aged woman approached me in the "back" and handed me my final (now swimming pool-sized) bottle of goo to drink.  I was beginning to feel quite exposed (literally) and chilled by the freezing air temperature of the "back", but still managed to chug down the remaining bottle through chattering teeth and subdue my stomach's urge to hurl.

     I was by this time, so chilled to the bone by the Artic air and lack of substantial clothing in the "back", that I readily jumped up when Nancy Nurse came to get me and whisked me behind the heavy door marked "Nuclear Medicine" (or Nukular, if you are the President of the United States).  Inside the room, the CT scanner hummed and three people dressed in various garb of protective gear hovered technician never removed himself from behind the plate of protective glass.  Probably the smartest of the group.

     A strange IV contraption was set up overhead with two, large cylinder plunger pumps and a clear liquid floating harmlessly inside them...this was the nuclear contrast dye that was soon to be rapidly flushed into my vein...this was what the protective gear was for.  No one seemed concerned about my potential danger from the clear liquid shooting through my veins...all three technicians huddled behind the protective glass once the test was started.

     Nancy Nurse did instruct me earlier that this atomic waste product dye would probably cause me to feel "flush" and also like I might have to go to the bathroom.  She didn't tell me I was going to turn beet red all over and feel like I had just wet my pants!  Nor had anyone informed me the gallons of goo Barium I had been chugging was going to create severe diarrhea...I realized after the fact I really hadn't been provided "informed consent".

     I mindlessly redressed myself and wandered my way off Pill Hill (where the medical complexes of Seattle sit) and meander downtown to my office building, darting in and out of businesses with public restrooms.  I felt horribly sick and unable to tear myself away from a toilet for more than ten minutes.  Once in the safety of the my work walls, the "flush" of the nuclear dye cleared from my body after about an hour and a half and my skin color returned.  My coworkers wanted to send me home and have me take the day off because I looked so "sheety".

     After about two hours of continual diarrhea, the fecal fest began to slow, and I felt a return to "normal" setting in...whatever normal is for me!  I had refused to go home ill from work...after all, I was already THERE...why waste precious sick time and my OWN toilet paper???  I accepted my assignment with one of my coworkers a few hours into the shit...I mean shift.

     We went to the county jail to evaluate an inmate being held there.  Jails are an interesting place to visit to say the least, but the psychiatric floor of the jail tops all.  Just as we were entering the cell block to approach the door of our detainee, another inmate in isolation began having an "episode" involved the throwing of feces and toilet water out the 6x18 pass through hole in the cell door.

     Poo was flying...toilet water splattered everywhere.  I jumped back just in time to avoid being hit by the barrage.  The stench was overwhelming.  We pivoted on our heels and immediately left without completing our task...there IS just so much one can take "all in a day's work" and I had had ENOUGH of a crappy day.

     Fecal Fest 2006 could not end soon enough for me...I never did discover the actual NAME of the test I endured.  It remains top secret.  My pipes are once again cleaned out clear up to the back of my throat.  I just can't seem to shake this "sheety" feeling...

Friday, August 11, 2006

I'm Just Sayin'...

     The United States would not have such an out of control rate of obesity if all the fat, stupid people would just get out of their cars at 7:00AM and walk to the door of the house and ring the doorbell where they are waiting for someone to come outside and join them in their car, rather than sitting in the driveway and honking...and honking...and honking....I'M JUST SAYIN'....

Thursday, August 10, 2006

Ever Have One Of Those Days?

     Ever have one of those days when you can just "sense" what you are seeing or hearing is only the tip of the iceberg?  When you have a "feeling" there is far more going on in your body than the manifested physical symptoms?  When you "know" the intensity of the emotion you are feeling is only a small piece of a much larger puzzle picture yet to be discovered?

     Ever have one of those days?  I am...

Wednesday, August 9, 2006

I Guess There's Nothing Funny About Stools...

    I never realized until yesterday just how much Gastroenterologists lack a sense of humor.  I'm talking about my follow up appointment with the Gut Doctor.

     I was a little sheepish, if you will, about going to see the Gut Doctor yesterday for my colonoscopy follow up.  After all, I have absolutely no recall of the procedure because I was highly medicated with Verced and Demerol while the Gut Doctor rammed his camera as far as he could into my "inner darkness" and punched out little biopsy holes in my pipes.  I have a hazy memory of hearing myself mumble, "That really hurts", then hearing the Gut Doctor say, "Give her five more of Verced".  That's all I've got in my memory bank.  And because I struggle with shutting my pie hole (er...keeping my mouth shut) when I'm FULLY awake, I worried some horrible statement or tasteless comment may have passed my lips.  The Gut Doctor made no mention of any inappropriate behavior on my behalf yesterday.

     So, I'm sitting in the office of this highly clinically focused physician while he is perusing through my lab and biopsy results.  I'm pretty smug because he has already told me "things looked really good" when referencing my scope...I was relieved to hear I had auditioned so well in front of his camera.  He then strikes a puzzled look on his face as he flips through my chart.  I lean in closer to try to sneak a peek at my top secret medical record.

     The Gut Doctor then begins to mutter something about the laboratory never seeming to complete all the tests he orders...he's now referencing the quaint little package of poo I had to leave as a present for some poor, suffering lab technician two weeks ago. 

     He says to me, "You know.  I can order 5 different tests to be done on stool specimens and I'm lucky if they complete 3".  He's not happy.

     So, in my best effort to try to cheer up the Gut Doctor, I resort to some much needed humor to slice through the thick air of his clinically-focused demeanor.  I go for a "poo" joke.

    "Well", I say smiling, "it IS stool after all.  Nobody really WANTS to handle that specimen".  I'm preparing for a hearty guffaw.

     I note the Gut Doctor's eyes dart quickly in my direction, then back down to the numbers and columns of results in my chart...his face remains stone-cold serious.  There isn't even a hint of response around his lips.  No smirk.  No smile even.  And definitely NOT any laughter.  My poo joke was a flop.  I learned that day there's really nothing funny about stools when you're a Gut Doctor!

     On a much brighter note (while still maintaining my focus on bodily functions), there were no problems noted in my large intestine.  I "passed" this test.  The Gut Doctor does want to travel to one more frontier where no man has ever gone before, however...he just HAS to take a look at my small intestine.

     So, I'm scheduled for yet another high-powered (and I'm sure equally expensive) test on Friday to take a peek at my upper least I have been assured there will be no swallowing of any cameras for THIS one!  It's some kind of specialized CT scan, which will take about two hours to complete.  Once the Gut Doctor has the results of this test, he'll feel comfortable ruling out or in any major gastro problems.

     I have to say I actually "like" the Gut Doctor, which is a pretty big accomplishment for any physician, as I tend to be about as approachable as a rabid dog when it comes to medical procedures.  He's smart, he's confident, he's direct, and he's sincere.  He's going to HAVE to work on that sense of humor though!

     Perhaps he's funnier when his patients are comatose with a camera rammed up their...ah...then again, maybe not.

Tuesday, August 8, 2006

Failure To Launch...

     Houston, we have a problem.  Tysabri Mission aborted.  We've experienced technical difficulties.

     Twenty-four hours before I am scheduled to receive my first Tysabri infusion at Dr. She Who Will Not Be Named office, a question arises about my B-cell count (or potential lack of it) secondary to my participation in the RRMS Rituxan Study.  The neurologist overseeing this study suggests I get a B-cell count just to make sure my cells are swimming normally in my immune system pool.

     So, as I am rushing around to get to work on time, I fire off one of my usual witty emails to Dr. SWWNBN and forward the email I have received moments earlier from the "other" neurologist, while poo pooing her concerns.  I receive a not-so-witty email back from Dr. SWWNBN telling me, "bad news.  Tysabri infusion is canceled because we don't have the drug yet".

     "What?!?", I cry out in vain.  "How can this be so?  I have prepared myself for this infusion to happen and worked to get it into my schedule with as little disruption as possible.  What in Heaven's SNAFU(Situation Normal:  All F**ked Up) could be the problem?"

     Unfortunately, I don't have the time in my day to investigate this problem at the moment, so I shuffle to my car (my calves are still bothering me) and just accept it for the time's what we highly flexible and adaptive people do. LOL

     On my short drive to work, my cell phone rings and it is a case manager from Biogen Idec/MS Active Source (who I shall hence forth refer to as Tysabri Dude) wanting to confirm my consent forms and read me yet more information from the Tysabri "peeps" bible.  I'm not one who's keen on driving and gabbing, but I allowed Tysabri Dude to yack in my ear because I know his call is just a formality.

     What I hadn't planned on hearing from Tysabri Dude was the fact my insurance company had yet to be CONTACTED by anyone for insurance authorization for this liquid gold!!!

     "What?", I yell out to no one in particular.  "How can this be so? (anyone else seeing a theme here?)  Less than half an hour ago I was scheduled to be infused you're saying no one really authorized this?"

     Tysabri Dude now sounds a bit tense and uncomfortable...perhaps he fears I might now run off the road and die in a car accident, thus causing Biogen Idec and the Touch Registry Program to have to add "death by auto accident" right next to "possibility of developing PML" on their warning label.

     Tysabri Dude then tells me this final step of authorization could take days or even weeks to finalize.  I flippantly tell him I could be dead or in a wheel chair (even worse) by the time everyone has jumped through the multi-level circus hoops required just to get my hands on a bag of his liquid gold...he continues reading from his pre-scripted lines without flinching.

     The ten minute call turned 25 minute nightmare (I originally agreed to listen to Tysabri Dude while driving because he assured me the call would only take "about 10 minutes") ends with me listening to a pre-recorded script of some woman reading the same information I have now reviewed and/or signed off on understanding at least 5 times...OK, I'll admit it.  I actually laid the phone down while the recording was spewing, but knew better than to end the call prematurely just in case they could tell if I REALLY didn't stay on the line for the entire broadcast.  I'm somewhat compliant...sometimes.

     I had initially been told gaining my insurance company's authorization wouldn't be a problem because they would only require me to show I "failed" (Insurance conglomerate wording, not the Tysabri Touch Program requirement...just for clarification) on the other less expensive ABC drugs...and for all practical purposes, I DID "fail" on Copaxone and Avonex.  Well actually, those drugs "failed" me in reality...semantics.

     So, I'm now stuck waiting on the launch pad.  I've been grounded for the time being.  I'm awaiting Houston's OK to blast off with Tysabri.

     Sure hope my insulating foam hangs tight while I wait...wouldn't want another Challenger incident...don't really want another relapse in the interim either...

Monday, August 7, 2006

Multiple Sclerosis Blogs I Read...

     Not only do I spend my mornings (or late nights, as the case may be) trying to come up with something informative (or at the very least fashionably tasteless) and entertaining to blog about, I also spend as much time as I have available READING several of my favorite MS blogs.  Most of these sites I have accidentally stumbled upon  or been led to via another MS blog site.

     I thoroughly enjoy reading the thoughts, opinions, and experiences of others who are also living their lives with's a strange bonding ritual I have developed via this new age of virtual reality!  Some of the bloggers I have contact with by phone or email...others remain anonymous and I don't even know their real names.  It doesn't really matter.  What we all share is a connection to a disease and a common experience:  we are living with Multiple Sclerosis.

     Several of the blog sites are quite entertaining and funny...some are touching and heart-felt...still others are informative and clinical.  Most are a mixture of all of those attributes.  I read them as frequently as I can and I try to leave comments when I am so moved on the sites which allow comments.

     There is a tiny space just to the right of Brain Cheese that mentions other journals I read.  You've probably noticed I only have three listed, but I actually read many more...I just don't list them on the side because the listing would take up too much space.  But, in an effort to provide a "reading list" to anyone who is interested, I will list my drive by bloggers here.  Please keep in mind they are listed in no particular order of interest (I don't want any hurt feelings now!) and if I have left YOUR blog/journal site out, leave me a comment so I can do a "drive by" at your site...most likely, I don't even know you exist but might LIKE to know about you!  Also, if you've got a particularly great site you read and want to let others know about it, leave a note in the comments section, too...BRAIN CHEESE is an equal opportunity journal after all.  LOL

     So, here's the list:

     Now, if that exhaustive list can't hold your interest or entertain you, you need Ritalin, my friend!  Happy reading...






Sunday, August 6, 2006

Spasms In The Night (Sung to the tune of "Strangers In The Night")

     "Spasms in the night...rotating leg pain...this calf is too tight...I'm feeling dee da dee da...hum hum hum blah blah".  I guess my career as a song writer was over before it started!

     If a picture says it all, the photo at the left is a fairly accurate image/description of how my legs were feeling in the night...crushing pain from calf spasms. 

     I was awakened at 4:00AM (mind you, I had only just fallen asleep at 2:00AM) by the sensation I can only describe as a MACK TRUCK running over my right calf. Wow, that was a painful jolt to stir me from a much needed sleep!  At first, I was rather discombobulated and disoriented...I think the real pain had seeped into my dream state and was experiencing it in some nightmarish form.  But as I returned to consciousness, I became acutely aware my experience was quite real...I was having deep calf spasms.

     I have occasionally experienced this type of pain before and it has usually been in conjunction with a relapse of my Multiple as you might imagine, a dark cloud of dread has been looming over my bed this morning, shadowing my subconscious, and trying to "rain on my parade".

     But since awakening this morning, I have had a bit of time and perspective to bring to the situation and I DON'T think this is culminating into a full-blown MS relapse.  As you may have read yesterday, I emptied my "tank of gas" last week and have been feeling punched in the gut by MS fatigue.  I also experienced a fairly stressful medical procedure on Thursday (only 3 days ago), AKA colon blow/colonoscopy.  With the addition of acute, monthly hormonal fluctuations occurring, AKA menses, it's no wonder my legs have gone into revolt.  Frankly, it's amazing they are even working at all!

     As most of you know, on a routine basis I have muscle spasticity in my lower legs because of a spinal lesion in my C4-C5 area.  I've learned to live with this...I have medications to take on an as needed basis to assist me...I do morning exercises while still in bed (what I call Bed Ballet) to "loosen" my calves so I can walk without falling in my first steps...I have essentially adapted.

     This crushing pain is a whole other story.  I don't "do" pain well...not because I can't tolerate it, but because "it" annoys and angers me more than anything!  I become quickly defiant toward pain generally (either that, or I experience intense, neurotic fear from it and will jump to the end of my life issues assuming the pain will just kill me! LOL) and I feel very irritable when I am experiencing body pains.  Pain seems to be a big trigger for me, reminding me my body is in control of my physical being, and my mind may not hold all the cards of influence.  I still struggle in my dealings with this MS symptom.

     Since I have found no reliable medication that assists with my neurological pain, I am left to attempt to "compromise" with it...narcotics, common seizure meds, anti-inflammatories, and OTC (over the counter) medications do nothing to assist me with this type of pain.  And believe me, they've ALL been tried.

     What does seem to influence the pain receptors somewhat is basic biofeedback/meditation.  If I can take my mental focus away from the sensations, they seem to lessen to some degree.  That's exactly what I had to do in the wee hours of the morning to be able to fall back to sleep (that, and a pinch of Klonopin for the spastic sensations!)...I imagined myself in a typical meditation I have practiced in the past, where I am a feather floating down from the sky, moving back and forth on the wind, and able to see a wide expanse of fields and trees and pastures below me.  Slowly, I am gliding downward and observing, feeling "light and carefree".

     Fortunately this meditation worked this morning and I didn't fall into a neurotic fit of tears and hyperventilation!  The meditation in combination with the medication seemed to do the trick, at least temporarily.  Now I am awake again and feeling like maybe a smaller truck is running over my calves...maybe a small Toyota Tundra?  Whatever.  At least it's not "Mack" sized.

     I see Dr. She Who Will Not Be Named on Tuesday for my Tysabri infusion,so if things worsen or don't get any better, I can get a consult then.  As far as I can tell, I'm still able to walk, but just with great stiffness today...I can manage that. 

     My MS is giving a "shout out" to me right now and I suppose I'm going to HAVE to listen to it again.  Sometimes I'd like to turn the volume off completely, though...sometimes tunes like "Spasms In The Night" are just not music to my ears...

Saturday, August 5, 2006

FATIGUE...It's Not A Four Letter Word, But It Should Be

     I want to sleep in this morning, but I can't...the echoes of SEAFAIR and what sounds like World War III (the lovely Blue Angels dive bombing overhead) are just outside my window.  It's also a gorgeous August day outside.  I have a list of things I need to get done this morning.  I want to have brunch with Saint EB.  There IS this blog to write.  I have my daily Multiple Sclerosis blogs to read.  I need to vacuum and wash my dishes before I get ready to go to work this afternoon...blahty blahty blah. 

     My "To Do" is a long list and I'm feeling "To Do Damn Tired" "To Do" any of it.'s not for the weak at heart and it's certainly NOT a symptom of MS I deal with all that well!

     I neither understand nor accept MS fatigue these days.  Oh, I "get" the clinical picture of it...I just don't understand why I have to have it!  I had always been someone filled with what appeared to be too MUCH nervous energy before being diagnosed with Multiple Sclerosis...always able to go, go, go...always able to rise to the challenge...always able to push myself just a wee bit farther.  That is, until MS FATIGUE came into my life.

     Fatigue, to me, has been the hardest symptom of MS to manage.  Because I mentally have equated it to a "character flaw" or a sign of "laziness", it has been quite an obstacle to overcome and accept in my life.  And because MY view of MS fatigue is so tainted, I assume others in my life must think I'm just "lazy" as well when I am unable to sometimes find the energy to do simple things.  And the longer I hold on to these assumptions (which are usually false projections of my own subconscious), the longer I allow myself to live in my own denial...I HAVE MS FATIGUE AND IT REQUIRES ME TO MAKE ADJUSTMENTS...I don't like this.

     It's hard to simplify one's life down to an analogy of a tank of gas, but here goes: 

     I spent my weekend assisting a friend in a car shopping crisis.  Although it was something I wanted to do, it still cost me some "gas".  I then proceeded to take a mini "vacation" to Sequim, WA.  Again, although a want "To Do", more "gas" was spent.  Then there was the preparation for the colonoscopy and the subsequent exam...WAY more gas than I wanted to spend (or expel, for that matter!).  There were the Tysabri papers/decision/contemplation...mental "gas".  And finally, back to work...big "gas" drain. 

     I think my weekly fatigue factor would look something like this:

                  Weekend Car Shopping = .10 tank of gas

                                 Mini Vacation = .10 tank of gas

                            Colon Blow Prep = .15 tank of gas

                                 Colonoscopy = .35 tank of gas  

Daily Living/Mental Wear and Tear = .15 tank of gas

                             Return to Work = .15 tank of gas

                                            TOTAL = EMPTY TANK

     One of the factors that doesn't often get figured into my fatigue cost of living, however, is this:

Cost of Living My Life The Way I Choose = PRICELESS


     So, I'm now out of gas, but I don't regret my expenditures this past week.  I now simply have to figure out a way to get the ol' tank refilled!  I'm staying in bed this morning.  I'm letting chores slide.  I'm rescheduling brunch with Saint EB for tomorrow.  I'm pulling out the "fatigue flag of surrender" and I'm waving it.  I'm trying to remember I'm NOT just lazy today.  I'm trying to accept fatigue is a symptom of a disease and not my character.

     I'm imagining myself sitting on that white bench in the picture above and just...resting...

Friday, August 4, 2006

I'm Living In A War Zone...SEAFAIR Style!

     Can you hear "it" echoing through my computer?  "It" is the sound of the Blue Angels roaring overhead, practicing for this weekend's airobatic air show in honor of SEAFAIR...Seattle's annual water and boat celebration.  If you listen closely (or at least when the Angels roar closer to the other end of the lake), you can hear the deep engine sound of the hydroplane boats revving their engines and racing around the water course in qualifying laps. 

     I shouldn't complain almost sounds snobbish to bitch about living so close to Lake Washington that I am "put out" by the sounds of the overhead aircraft and watercraft who are preparing for their weekend of "fun".  But it is eerily annoying.

     I've never attended SEAFAIR on the water or from the shore of Lake Washington.  I'm just not big on large crowds mixed with a large lake and large amounts of alcohol...seems like a potentially dangerous combination if you ask me.  And I get to attend at least part of the Blue Angel's air show for free...they are, after all, currently dive bombing and twirling right now over my home!  I suppose it's a bit more spectacular to watch them do this over a large and deep body of water...the lake casts a looming body of "fear" should they crash.  

     Frankly, I'm scared enough one of the pilots might sneeze and take the roof off my house...that thought is enough excitement for MY weekend!

**See what "fun" you're missing while you sit roasting in Chicago, Suzy?!?**

Thursday, August 3, 2006

Ride It Like You Stole It...

     I just got “the call” today from my neurologist’s office, asking me to come by and sign the multi-paged consent forms to begin Tysabri infusions next week.  And I thought I’d have a “light” day at home, recovering from my colon Roto-Rooter event this morning (AKA colonoscopy)!  Preliminary results of the inside view of my pipes looks good…no noted cancers, inflammations, etc.  I’ll know more next week after my follow up appointment with the Gut Doctor.

     So, back to the issue at hand:  Tysabri.  I was able to find my way to the office of Dr. She Who Will Not Be Named, neuro extraordinaire, and sign the pages of consent forms, alerting me on every line I “could” develop PML (Progressive Multifocal Leukoencephalopathy).  Although I’m not sure my consent would hold up in a court of law, given the fact the Gut Doctor’s instructions earlier in the day told me explicitly NOT to sign any important legal papers! LOL  Whatever…I signed anyway.  At least I DID follow the post colon blow instructions and not DRIVE to the neuro’s office…I am occasionally compliant with instructions.

     I’ve done quite a bit of my own research on Tysabri and PML and I’ve consulted with two leading neurologists in the area.  I feel like I’ve covered as many bases on the playing field as I possibly can.  And my research and “gut feeling” (my gut has been playing a starring roll in my life these days) is to proceed with this drug.  Here’s why:

1.    My MS has become “aggressive” this Spring and has been interfering with my quality of life.

2.    I have taken both Copaxone and Avonex.  The drugs didn’t work for me and made me ill…worse than my MS did.

3.    The options presented to me in May were Novantrone, Rebif, or monthly Solumedrol infusions.  Rebif is just more interferon and since I reacted so poorly to Avonex, I really didn’t want to put myself through a trial of it again.  Novantrone has a lifetime limit of usage and I certainly wasn’t/am not ready to use up that option this early in the game!  I also didn’t want to endure the side effects of such a strong chemotherapy agent.  And finally, Solumedrol monthly carries it’s own risks of psychosis, osteoporosis, diabetes, and my usual electrolyte imbalances that always occur with its use.  Introducing Tysabri…

     What I know about Tysabri is this:  It has only been studied in controlled cases for two years.  3 persons developed PML in relationship to Tysabri use, two of which died.  Two of the Tysabri users were MS patients and one was a Crohn’s patient.  The MS patients were also being treated with Avonex while on the Tysabri.  The Crohn’s patient had received other immuno-suppressant agents before and during Tysabri use.  Current statistical predictions are a 1 in 1,000 possibility of developing PML from Tysabri use, but it is actually too soon to tell if this risk will be greater or less than predicted.  Tysabri use is now strictly recommended only as a “mono therapy”, meaning not to be used in conjunction with other immuno-modulators or immuno-suppressants.  To qualify for infusions, one must first show “failure” on other recommended MS treatments and Tysabri is not recommended as a first line treatment for Multiple Sclerosis.  Monitoring of patients receiving Tysabri will be strict via the TOUCH registry program, requiring frequent intervals of exams to observe for development of PML symptoms.  It is an IV infusion done every 4 weeks (13 times a year) and must be done in a TOUCH registered infusion center, prescribed by a TOUCH registered physician, and distributed by a TOUCH registered pharmacy.  Side effects from Tysabri infusion are quite low in comparison to the interferons, with infusion reaction/allergic reaction being the greatest risk. 

     And this is what I know about PML/Progressive Multifocal Leukoencephalopathy:  It is an infrequent disorder of the nervous system that primarily affects individuals with suppressed immune systems, i.e., transplant patients, cancer patients, AIDS patients, etc.  It is caused by the human polyomavirus, otherwise known as the “JC” virus (the initials of the first AIDS patient who was known to contracted PML), which most of us (approximately 80-85%) carry and/or have been exposed to.  The virus is an opportunistic one, in the sense a normal and functioning immune system keeps it “dormant”, but under the right conditions, it will take advantage of a compromised immune system and activate.  PML causes demyelination or destruction of the myelin sheath that covers nerve cells (sound familiar, MSers?) and it’s symptoms often include mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and eventually coma.  Early symptoms of PML may include weakness in one side of the body or limbs, blurred vision or loss of visual acuity, and fatigue (sound REAL familiar, MSers??).  It may also include impairments in learned skills such as language, memory loss, confusion, disorientation, or a loss of balance (at this point, how could anyone tell if they have PML or an MS exacerbation?!?).  It is a relentlessly progressive disease for which there is no cure.  Historical statistics estimate death occurs between 1 and 4 months after onset, but there are also documented cases of PML survival for several months to years, and some statistics indicate about 10% of people with PML (these have been generally AIDS patients) have recovered with or without treatment.  The disease is unpredictable.

     So, after reading all of that, one might wonder WHY I would ever choose to infuse a drug with these potential risks.  It’s simple for me really…the potential benefit outweighs the risk.  If there is a “chance” this drug may slow the progression of my already “aggressive” MS, giving me as little on-going side effects as possible, causing only one day every 4 weeks to be interrupted for infusion, and delaying disability, then it is WORTH THE RISK TO ME.  It is NOT worth the risk for some others with MS and only the individual MSer can decide.  Currently, I am at a much higher statistical rate for death by auto accident, given my age, geography, and amount of driving I do at my job, than I am for developing PML…and I still get in my car every day. 


     Life is about risk and risk-taking for me and I certainly don’t want to possibly find myself in a wheelchair years from now (or blind, or incontinent, etc.) and wonder “what if”…What if I HAD tried Tysabri?  How might my life be different?  What if I had allowed my fear to rule over my scientific, practical common sense?

     Since being diagnosed with Multiple Sclerosis in 2003, I have adapted a “life motto” for myself.  It is this:  Ride it like you stole it!  I’m jumping on the ride…