Wednesday, March 05, 2008

I Ain't Dead...Yet...

Still kicking...maybe not with the same "umphf" as a month ago, but it's gonna take more than a hellish month of February to keep me underground!

I finished my five day course of Solumedrol yesterday...of course, not without trauma and drama withstanding. My arms look like that of a virgin heroin user...it seems I am "losing" some of my vein elasticity, can't hold a patent IV for more than a day or two, and have had the unfortunate experience of "Vampira" trying to draw blood on me! I now have more bruising than one should EVER sport in public places. I'm usually quite patient and understanding of medical professionals, but I simply had to draw the line yesterday when "Vampira" (after her second missed stick) decided to attempt to hit my antecubital vein with a straight, deep shot inward...I finally had to tell her to stop digging, take the needle out, and I would simply GNAW a vein open for her in my hand with my teeth...it was the only logical thing I could think to do. LOL Thank goodness for IV nurses that roam the hospital just looking for a challenge...dear Cynthia was able to restart my IV with her eyes closed, one hand tied behind her back, and me contorting my arm in a most unholy-like position. But...we got 'er done.


Five days of Soly have also caused a most "unholy" change in my demeanor and personality...I've taken to yelling at the P.O.D. (Princess O' Darkness cat) for no apparent or good reason...I've taken to cursing at the TV (for GOOD reason)...and I've taken to wanting to slap myself silly because even I am annoying MYSELF! My gnat-like attention span is driving me crazy as is the completely full-yet-I-must-eat symptom of the steroids...so far (and I DO mean "so far") I seem to have only packed on 6 pounds back of the 18 I so painstakingly have LOST since the first of the year...what a bummer is that?!? Dr. She Who Will Not Be Named has stopped doing Prednisone tapers with her patients because (in her words) she didn't really see where the taper made much of a difference either way...so I will be "riding out" the steroid withdrawal (which landed me in the ER 2 summer's ago from Steroid Withdrawal Syndrome) and hope to stabilize soon. The tremors and shaky feelings are the worst...oh, and the nausea. Minor details...


On a good note, yesterday I had a most unexpected but delightful visit from one of my previous bosses...and, being the complete and utter ATTENTION WHORE I am right now, I am certain I bored her to tears with my blathering steroidal antics. It may be a long time coming before she considers THAT kind of a visit again! LOL But it was nice to have some company besides the cat.


I did manage to accomplish a few things today...actually a LOT of things today given my current state of steroid crazy! My dear car, LUNA, has finally made her way home...all shiny, repaired, and smelling of new paint. I am soooo happy to have her back. The rental car (which sat in my driveway the entire time I have rented it due to MS relapse, yet costing me $100.00 to "pretty up" my driveway!) was also returned today. I was able to retrieve my mail, get prescriptions filled, pick up two large planters (all via help of friends), renew the car tag I needed to safely GET my LUNA home without a ticket for expired tags (didn't renew earlier when I thought they were going to total my car...why pay the money for nothing?!?), AND get my taxes back from the accountant. I also finally got around to getting my ECHO and MRI tests finalized for next week so I can hopefully get on the Tysabri ball by April. I am attempting to return to work on "light duty" status this Friday, so of course a ream of paper had to be faxed to Dr. SWWNBN for her signatures and thought-provoking advice to my employer...I think that's quite a bit to accomplish during this steroid haze I am in actually!


So, it's back to the Klonopin bottle for me again...must medicate to keep my brains somewhat grounded in reality. MS relapse report is not exactly where I would like it to be at the moment, but I think I AM improving. I am having less pain in my right leg/hip and a LOT more uncomfortable sensation in my left leg...considering this leg was completely numb a week ago, I suppose this really should be viewed as an "improvement"...I'll take whatever positive twist I can get at the moment. :-) I am still walking with two canes and a cob up my butt with shaky balance, but I AM still walking...must be thankful for something.


How's your world? Tell me everything out of pure entertainment pleasure for ME...because even YOUR world is all about me...

14 comments:

Diane J Standiford said...

For your entertainment: And OF COURSE it is all about you-DUH.
I lately have been tering out magazine ads showing a "new" product I want to try. I tear it out, leave it for my aide who stops at the grocery when she comes to babysit me. Well, I wanted this "Fusion," juice drink "100% daily serving of vegs and fruits in each 12oz bottle. After weeks my local store still did not stock it. So Tues., my aide found them for only 50 cents at an outlet store.(WAKE UP) She bought 6 for me and I took a sip...NIRVANA! Most delicious thing I ever drank! Better than sex! I chug a lugged while my partner telling me to "slow down, you're going to get sick." Then I was accused of being drunk. I did feel like I was guzzling Jack Daniels. 2hrs later---I feel like I'm dieing. get shakes, bad leg is quivering like a bowl of jelly. AND I HAD TO POST MY BLOG!! My left hand went spastic. Fell aslep around 1 and sleep all day, then felt great and craved another Fusion. Which I drank and forced my CNA to drink too and see of she died. We both lived, but a tiny can of V-8 has fewer calories and carbs and sugars.

Anonymous said...

it's wonderful that you crawled out of the relapse hole! I don't have relapses anymore and i'm not sure if that's better or worse ? Also, I don't think that you should go back to work so soon, but what do i know ??
I am getting ready to have my second , follow up, Rituxan infusion. I envy your strenght to fight ! I am ready most days to wave the white flag...
Stay strong Linda !
Adina

Anonymous said...

Good to hear you're seeing the light at the end of the tunnel. How long has it been since your last Novantrone? At least 3 months before you give the Tysabri a go, yes? Happy you have your auto back, too...YAY! I've been off work for 7 months now due to increasing decreasing mobility courtesy of MS..I am a LVN (LPN in your neck of the woods!) I had applied for SSDI a few months into my time off because I felt so much better not working in terms of dealing with MS. Now, almost 6 months later, I received word that the SSDI was approved (it felt so weird about feeling good to be declared disabled)What a relief..I've worked for 35 years and was Dx with MS 20 years ago.So, thats my big news!
Sue in California

BRAINCHEESE said...

DIANE:

OMG! I don't know if I should thank you for the entertainment or send 911 to your place!!! You sound as if you have a great working relationship with your Aides...that's so nice to read about because I KNOW it isn't always that way for people in finding a good fit.

Stay sober...LOL

LD

BRAINCHEESE said...

ADINA:

Ah, what poses as "strength" here is really pure fearful energy. So sorry to hear you are having such a fighting time of it...would love to continue email chats with you if you feel up to it? Purely for selfish reasons though...you brighten my day and make me smile!

LD

BRAINCHEESE said...

SUE:

OMG! Another nurse! LOL Thanks for sharing your cliffnote version of your MS story...sounds like you've been through the ringer with your MS?

If you ever feel so inclined, email me sometime and we can swap dirty nursing stories...what type of nursing did you do, BTW? Oh well, what type of nursing IS there really besides the crappy/crazy kind?!? LOL

LD

Anne said...

Hi Linda: Glad you are on the mend. Take care. Anne

Callie said...

Oh Linda,
I'm so sorry for the steroid BS and everything going on. Geezus, What a world! My Doc, attempted to mention steroids in the future if there were to be any more issues and I told him, Hell No!,I'm fat enough and I'll crawl first. Of course,I can say that now, but who bloody knows. Geezus, I hate to hear these things. Please take care and mend soon!

LISA EMRICH said...

Hi,

I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.

Thanks,
Lisa

BRAINCHEESE said...

ANNE:

Thanks Anne...I think I'm mending rather than amending at this point!


LD

BRAINCHEESE said...

CALLIE:

Yes, it's a hard call sometimes whether or not to take the roids or ride it out...often, I'm a "rider"...but this episode was stealing my joy, so I "roided"!

LD

BRAINCHEESE said...

LISA E:

Absolutely wonderful project you've done! And very detailed and informative. Thank you...

LD

Have myelin? said...

Wanna know about my world? Hubby finally rolled off his Seattle project (whee, I thought he's HOME now) but before his plane landed they started calling. Now Microsoft wants him for a project. Sigh. At least he gets to stay home a month. I should tag along and meet the new Luna! HA.

BRAINCHEESE said...

HAVE MYELIN:

COME ON UP HERE!!! Oh, my Gawd we'd have fun...me, totally only able to speak dirty words in ASL and you...well, being you! What a treat that would be...

LD