Not a "good" day...it started out with a way too early MRI at 7:15AM. Barely got out of bed early enough to change out of my pajamas, let alone greet my guardian angel, EB, who graciously gave me a ride in the rain to my appointment. Got shoved in the tube and came home with my copy of the films/disk for my own, personal voyeuristic pleasures (is it really voyeurism if you're looking at yourself?!?). My returning cab driver from Ethiopia was nice, though...and his cab was clean.
I took a peek at my noggin photos and noticed a few changes, but all in all, realized I DID still have some brain tissue left...so I emailed Dr. She Who Will Not Be Named to tell her "my findings"...unfortunately, what I believed I saw was NOT her assessment. She reported I had two new enhancing lesions (I think I really did see this, but denial is a powerful tool for the mind) and the TYSABRI nazi's have refused me infusion rights now because of my "anaphylactoid reaction" last week. Guess based on the MRI, the liquid gold may not really be working for me anyway.
Sooo...Dr. SWWNBN is consulting with my previous neurologist on "what to do"...I'm running out of options and my disease continues to progress itself right through the center of my brain. Here are her actual words, but I'm sure if she ever "discovered" I have been quoting her on "Cheese", I'll probably get sued!
You are a bad neurologist. You have two newly enhancing lesions not noted in 5/06. The Biogen folks said no infusion; I am actually talking your case over with your other neurologist to see if she has any brilliant ideas – she’s still cogitating so I feel better. Happy to write you a note although I don’t think you should go to work Thursday. So maybe Friday, preferably Mon. Where shall I send it?
The latter part of her message was in reference to my BEGGING for a note to return me to work on Thanksgiving Day as my coworkers will be working skeletal staffingand really would feel the impact of my absence...somehow, I STILL care about my job! The sad statement of fact is, I'm really not even sure I CAN physically return to work in two days...I still have vertigo (although not as bad as Sunday) and my left leg is very weak and unstable. But I feel I HAVE to have a goal right now...at least some kind of sense of control in my life since MS is stripping me of my dignity and trying to steal my joy. LOL
I had my second dose of IV Solumedrol today at 3:30PM...another good friend and neighbor carted me to and fro for that adventure as I can't drive right now. Well, I "could" drive...but I haven't lost ALL of my brain tissue and discernment to know I'd probably kill someone if I tried to drive! The infusion went fine, but I'm starting to feel the whirly psycho effects of the roids...you know, crying at AT&T commercials, slurred speech, wanting to eat not only the contents of my refrigerator but also the metal of the container itself, and agitation!
So, as you can tell, I really AM on the cusp of normal and I'm desperately trying to find my happy place...
14 comments:
I do hope your day today is marked with less difficult side effects of the steroids. Take it easy for a few days now and it will pay off later with better mobility and speech. It's hard NOT to go to work though as your mind must race into the thoughts you don't want to think. It sounds like you ahve nice neighbors to transport you when you need it. I hope you Thanksgiving goes well and that it is spent with friends/family that are good for you.
Deb
Hey, LD, I'm going to pray to the God whose name I don't know, to the God who has us all in her hands, to the God who's with those falling from the sky, to the God who's with you, even now, especially now, for you.
Hey, hang in there kiddo ... you have the strength and will to get through this. Not my usual fluff, but you know, comedy all the time is like too much sugar. Rots your teeth. Anyways, happy thanksgiving and keep weeping at commercials ... and keep the appetite up for turkey day.
Two neuros working on it? Good! To me that means no one's ready to throw in the towel! So yes, this is a set back but not the end of the world.... Hang in there.
If you could just sit at a desk (with a mini fridge!) and do busy work tomorrow then going to work wouldn't be too bad an idea, but if you have to run all over Seattle, staying home a few days would probably be best.
Maybe you could use this home time to really *focus* on what you want... light a few candles in the darkness? I think you know what I mean..........
Hugs!
DEBOAK:
Hello! I don't think we've met before...but I DO have MS, so you could actually be my sister and I may not remember! LOL
At any rate, it's very nice to hear from you and to hopefully get to know you better in the future. Thank you also for your kind wishes and thoughts...from the content of your comment, it looks as though you, too, may have MS...but one never wants to "ASSUME" anything about this disease!
Happy Holiday to you...eats lots of turkey for that natural Trytophan high and sleep off the day!
LD
ROJOO:
My buddy, my friend! Even writing plain old comments, they are poetic! Your words mean more to me than you may know and the depth of feeling added offers me such peace...you are truly a gift to me and to this world and to our sometimes thankless job.
I hope you may have the holiday off to spend with your wife and beautiful boys...I haven't been in to check the work schedule, but for once, I hope I DON"T see you if I go back to work tomorrow!
LD
MONDOVAPOVA:
Ah, my friend...just the perfect words at the perfect time...how DO you do it???
Thanks for your wonderful humor...it is a rare species in this serious world and you mix it so nicely with grace! I really enjoyed your blog post today by the way... http://mdmhvonpa.blogspot.com/ ,very touching, even from a Republican/tough guy/computer geek! Thank you...
LD
PEEJ:
FOCUS?!? I'm on roids, my friend! All thoughts of focus got thrown out the window by the second infusion!! LOL But yes, I do know "what you mean" and thanks for reminding me of a need to return to my center.
Yes, two neuro's kind of sounds like a mint commercial, doesn't it? You know, "Two mints, two mints, two mints in one! **click** Let's hope they are both just as refreshing as those damn mints! LOL
Happy T-Day,
LD
Ughh....I hated hearing it in your voice and now reading it even makes it more real. Bad things are happening to the best people around me and I have no idea what to do or say.
Talking to you did make me laugh, and I hope you laughed a little too. If not for the laughs....
I'm just sayin'.....
Hugs from warm and sunny Chicago burbs
Oh my gosh, Linda. So sorry about this. I'll keep you in my prayers for a speedy reversal of the current symptoms (vertigo sucks SO bad - I've had it occasionally and it's just miserable, so I know what you're up against!) and that the steroids don't make you too basket-casey. Is novantrone an option? Would you want to go on it if it is??
Again, I hope the roids kick in and you start to feel better soon and don't do TOO much too soon. Your co-workers will survive. :)
~Zee
SUZY:
Sometimes we say the most when we say nothing at all...and yes, I too enjoyed the laughs, albeit, mostly at your pitiful "elimination problems" expense! LOL Life is what it is...I'm just trying to hold that thought in the highest light right now.
On a funnier note, Dr. SWWNBN just made me howl outloud today in email...I know you are incredibly jealous of her and you really SHOULD be! Come out to Seattle and get that second opinion and we'll gorge ourselves on Northwest food and fun while you're at it! LOLOL
OH YEAH...and I'm Just Sayin'
LD
ZEE:
Thanks for the prayers and good thoughts...yes, vertigo is a beauch as you know! But then again, I can't think of ONE MS symptom that is truly "comfy", can you?!?
Novantrone remains an ugly option and not one I am ready to bend over for...because of it's life time limit on dosing as well as it's chemotherapy side effects, I'd like to hold out on THAT one until I just can't do anything else.
The roids are giving me speed freak hell right now, but I'm managing...they DO seem to help me over time. My neurologist is pondering and contemplating for me, so I just have to leave outcomes in her hands. I'm trying to remember what Dame (maybe Julian?) said, "All will be well. All manner of things shall be well." That's what I'm trying to focus on...some dead broad's old quote!!! Now there's a plan, eh? LOL
LD
Okay....is there something going around in the MS community of Washington State? I am SO sorry to hear that you are not doing well. I hope that you get to feeling better very soon and that you can enjoy your holiday. You will be in my thoughts and prayers. Please take care.
Jaime
JAIME:
Yes, it DOES seem there is something in the "air" right now...maybe it's the rain and mold spores? Maybe that's what's up with MS in the Northwest and no one has taken the time to study it??? Don't we all "wish" it were that simple?!?
I hope you are doing better these days as well...take care.
LD
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