Sunday, September 3, 2006

Where Do I Begin?...

     I had to go back and review when the last date was that I posted anything to the "Cheese"...WOW!  A lot can happen in a week!

     Let's see...where to begin.  I'll start with the TYSABRI infusion and work chronologically forward (or something like that).  TYSABRI is "in"...I remained off work for almost 6 days (wasn't scheduled to work all six, so it wasn't as dramatic as that sounds!) and recovered from my systemic joint stiffness/pain/severe fatigue for the most part.  Interestingly, my vision seems much improved, but as with any drug and MS, it's hard to know if it's the drug effects or simply the MS giving me a break.  I'll get re-infused on the 26th of September and will hopefully know more/experience better results with each infusion.

     I DID get my first EOB (the insurance note telling me what was charged and what they paid) for the cost of the infusion, which did NOT include the mega cost of the TYSABRI drug...Dr. She Who Will Not Be Named office charged my insurance company $3357.00 to run that bag of liquid gold in my arm!!!  And I didn't even get a snack, a neck massage, or my pillow fluffed!!!  I am a bit "sore" in the back side however, as it feels like I might have gotten a bit "screwed" by the billing! LOL

     I haven't had a conversation yet with Dr. SWWNBN office or with the good doctor herself about this outrageous bill...Doc just had her own surgery for a "pain in the neck", so she's out for a bit (should I be worried my neurologist has neurological problems???).  But rest assured I WILL be speaking to someone about this cost as I will be absorbing 10% of it...lest I remind you, I work in Social Services, not Microsoft!

     Adding into my mix of an already "interesting" week, I became the human pet for my kitten on Friday.  Meha made it home in one piece, and for the first 24 hours, she was a sweet and docile little kitty...I suppose I should accentuate the FIRST 24 HOURS.  She IS adorable (note chin and cat picture at the top), but also IS a kitten...we've had a few household battles, most of which, she has won (but I don't let her know that!).  We are learning to adjust to each other and she certainly isn't as "touched" as I first thought she might be...getting her away from her brute siblings has caused my "little flower" to blossom!  She had her first doctor's appointment last week (because everyone in my household MUST have a physician?!?) and everything checked out well...she now weighs 2 lbs. 9 this weight gain rate, she'll be a lioness in no time!!!

     Work was extraordinarily painful this past week.  It happened to be what is called my "back up" week, which is a polite way to say my "you'll work whatever hours we tell you to work, beauch" week!  Once every 7 weeks, my coworkers and I rotate through a back up week, which consists of a smorgasbord of hours we have to cover for anyone who might be on vacation or off duty for other reasons...these hours are NOT always reasonable or customary!  Fortunately, I share my back up week (also known as BLACKOUT week for descriptive purposes!) with my buddy, who I'll call Roger, because that's his's much easier to manage with someone who is at least fun and encouraging! (BTW, Rojoo...I'm thinking of you and your mother and wishing you both peace during her illness)  But even our own "reasonable" characters did not spare us from a difficult back up week.  It felt like all I did was spend time at work toward the end of the week, having only about 7 hours in between shifts at one point...I became a tired puppy by Friday!

     Also by Friday, the lovely Western Washington heat returned, sending temperatures once again soaring into the upper 80's and low 90's...have I mentioned I hate heat?!?  My arse began to REALLY drag (as well as my left leg) by the time I returned home from work Friday evening.

     Saturday (yesterday), I awoke with an excitement I haven't felt in a few weeks...The GEEK SQUAD was coming to repair my desktop!!!  I was soon to be back on line (and how I am typing now...the laptop is just plain dead at this point, so it's desktop city from here on out).  TYLER, my personal GEEK technician, spent a few hours typing, downloading, computing, and repairing the horrible mess I had created on "Ol' Faithful"...I was just overjoyed she was repairable!  Meha, of course, became a kitty "ho" and slept for an hour or so on Tyler's lap while he slaved away on the puter...AND I got a T-shirt out of the deal with the GEEK SQUAD logo! (This only cost me $270.00 neurologist didn't even give me a TYSABRI T-shirt and she is FAR MORE expensive!)  Whatever...I was/am happy to be back on line and the cost seemed well worth it.  Not to mention, Tyler's wife has Lupus, so we had lot's of conversation to share during his toiling hours and Meha's napping time.

     I've received some disturbing, if not down right hostile emails from a few of you, wondering when I'd be back on line and writing on "Cheese"...well...I'M BAAAAAACK!  So simmer down now...LOL  I hope this whets your appetites for a few hours...


lglbgl2003 said...

(((((((Linda)))))))) I'm so happy for you!  <<Interestingly, my vision seems much improved, but as with any drug and MS, it's hard to know if it's the drug effects or simply the MS giving me a break>> THAT is PRECISELY HOW TYSABRI WORKS!!! Tysabri attaches itself to the harmful T-cells which prevents them from crossing the Blood Brain Barrier (BBB) and entering the Central Nervous System (CNS) where they do damage (create lesions/scarring/symptoms), GIVING YOUR BODY A BREAK FROM THE MS!!!!!!!!!

I have also had some exciting news (HUGE news!)from Kaiser Permanente in Calif (see my Blog-Living With MS- and there is info there too re: nationwide cert. infusion centers, Financial Assistance info for Tysabri, etc.......again Linda, I am SOOO happy for you!  :D

All my VERY best to you and ALL MS patients,

harkoo said...

Who would say rude things to you about your not being able to write on your blog?   Could they not have ms and be ignorant of all you are having to deal with?   It looks like you are holding your own juggling 8 things at once and it looks hopeful with some improvement seen from the drug infusion.    I'll keep hoping all goes well with your health.    

harkoo said...

just realizing i have been DUPED by Linda's dry sense of humor--so naive and sincere here on the opposite side of the country!

hagartyjj said...

Glad to see you are back, your computer is fixed and you even got a t-shirt out of it! :)  lol  Meha is so adorable.  I am glad to hear she is getting used to her new home nicely.  

I was amazed to hear of the cost of Tysabri, but I guess I really should not have been (considering I used to work in medicine).  Everything is SO you said today...this is a business!  You can say that again.  You have been in my thoughts and prayers that everything goes well for you.  I hope that you are feeling well.  

Take care of yourself.


sonyasuzanne said...

Nothing like getting your arse kicked twice eh?  Especially by well meaning friends!  I hope the emails weren't too bad.....were they?

I had searched online for a MISSED YOU song to post here, but couldn't find any with the proper words.  Dayum....all of them had lyrics about heart broken lovers and I figured that would be sooooo inappropriate, eh?  

At least you know I tried, right?  hehe

Good to have you 'home' where you belong!



sonyasuzanne said...

Oh my you KNOW I'm having cognitive issue's when I didn't even comment on how gorgeous Miha is! Geesh....what has come over me?

Glad to hear that the both of you are doing well together!