Finally Getting Somewhere!

After unsuccessfully trying to reach someone at my neurologist's office since Monday, I FINALLY got a hold of someone and got the ball rolling.  I think part of the problem with getting a call back was my multi-tiered messages I left.  I like to consider myself a multi-tasker, so instead of leaving a message only about one specific issue, I left one encompassing ALL my issues... last time I do that!

So as much as I absolutely hate Solu-Medrol, the doctor thinks it best.  I have been scheduled for a 2-day cycle of the steroid for Monday and Tuesday.  Which means that come Wednesday, my house should be pretty damned clean, my laundry will all be done, and I will probably be down on my hands and knees scrubbing the baseboards of my house with a toothbrush.  But of course, come Wednesday night, I will be zombified. Apparently, sleep is a necessary function. ;-)

I also talked to the doctor about what needed to be done to start my switch-over from Avonex to Tysabri.  Based on my most recent MRI's and the new lesions on my C-spine, the docs said that it appears I qualify for Tysabri, now. They actually told me that about a month ago, but I hadn't made my decision to go for it until just recently.  Tysabri is the new(er) "super drug" for MS.  But, as it goes, the more aggressive the drug, the more severe the side-effects.  Tysabri is no exception.  I hesitated about it for so long because of the HUGE caveat that goes with Tysabri:  "Tysabri increases the risk of a serious viral infection of the brain that can lead to disability or death.  This risk is higher if you have a weak immune system or are receiving certain medicines." Anyone who knows me could tell you that I don't exactly have the best medical luck.  In fact, my luck is so spectacular medically, that I would be that 1 person in 1000 that contracts the infection.  I'd say my hesitation is justified.

However, every week I give myself my Avonex injection and then experience the awesome weekly side-effects from that, I decide that it's a risk I'm willing to take.  Besides, if I have only been diagnosed with MS for 2 years and already my lesions have doubled, then how long will it take if I continue at that rate until I am immobilized or incapacitated?  Me in any sort of wheel chair is a very scary thought-- for everyone around me, more than me!

So Monday I'll go in and get my initial labs drawn to start the ball rolling on Tysabri.  In order to receive Tysabri, you have to be meet a whole slue of requirements. Let's just hope I meet those requirements... or instead of getting to cut out the weekly injections and go in once a month for an infusion, I'll end up switching to another medication-- one that requires daily or every-other-day injections. Ugh. Yuck. 

Work is exhausting today. I think my body is impervious to amphetamines (Adderol). I'm still tired.  Only 45 more minutes of work, then I get to head home, hug and kiss the boyfriend, change my clothes, pack up my car, and head to Job #2-- a Slumber Party in Midvale. So much for any chance of resting-- that is a guaranteed 3-6 hours on my feet. My goal is to be done with her party, have orders done, and my car packed up and on the road heading home by 10:30.

Wish me luck.

As I'm leaving the office today to head to yet another doctor's appointment, my boss asks me, "when do you think you'll be back?" I shrugged my shoulders and said, "You know how doctors are."

He finished my thought with, "It depends on how long you're sitting and waiting in the waiting room." I nodded.

Then he laughs to himself and adds, "I bet there are a lot of people sleeping in that waiting room."

I had no choice but to laugh and leave for my appointment with the narcolepsy doctor.

Lyrica

Last night while Israel and I were trying to decide if we had watched the episode of Lost that was on my DVR, a commercial for Lyrica came on... I stopped fast-forwarding (out of curiosity) and was like, "Hey, my doctor prescribed this to me..." The commercial was for use for Fibromyalgia pain... but the explanation made sense why my doctor would prescribe it for MS pain.  We watched the entire commercial.

At the end, after the extensive list of side-effects from the drug, Israel was like, "Damn.  I think I'd rather be in pain."

See what I'm talking about.

This feeling is familiar.

The past couple of weeks are starting to catch up with me:  5 days in New Orleans, LA, 4 days of "catch up" at work, a 15-hour work day on Friday, the MS Walk on Saturday... my body is protesting.

I started feeling it Saturday night, after a long day at the MS Walk and the park afterwards with my family.  I was exhausted by the time I got home.  I took a brief nap, then got up and ready to go out with Israel for the night.  As we were at dinner, I started feeling the physical effects of such a busy and stressful couple of weeks.  My body started getting that very heavy feeling down the left side.  It was a heavy, shaky feeling-- a familiar feeling.  As my mind wrapped around the feeling, my mood changed instantly.  I knew that feeling too well-- it starts as a slight tingling sensation... then almost a shaky feeling... then it gets heavy.  I knew what it meant and wanted to go home.

Last night after dinner, the entire left side of my body was tingling-- from my face down to my toes.  It felt like half of my body was naked under a shower head or drizzling rain storm or something.  It's not painful-- just uncomfortable-- on par with being tickled.

I'm trying to decide if I should call the neurologist and try to nip it in the bud with some IV steroids.  I hate the steroids... H-A-T-E them.  But... I also hate being immobilized.  I think a couple sleepless moody days is a small price to pay for my mobility.

I'm tired of being tired.

Apologies.

Israel didn't let me stay mad at him for long after Friday night.  The next morning as we were waking up, he apologized and explained.

I think he and I drive each other crazy with how alike we are-- we are equally stubborn and proud.  And we each make the other do things that are completely out of character and unnatural.

Definitely one of those "drive you crazy" sort of loves.

Walk MS 2010

Saturday was the Walk MS 2010 in Salt Lake City... what a fun day, and how incredible the changes that can occur in just one year!  Last year, I couldn't walk the entire thing-- 3 miles seemed like a marathon!  This year, I used the push of my family and kept going through the entire walk.  At the end of the walk, Israel put me on his shoulders and we ran across the finish line.  It was a fantastic time with family and friends!  A few different families of kids in my mom's elementary school class came out to walk with us, too.  They were so cute when they met me and were able to put a face to the cause.  They shyly (but proudly) told me how much money they were able to raise for the event.  It was cute!

After the Walk, we all met at the park and had a big lunch.  I brought Mohamed and Suhur along to play with my nieces.  (They've been begging me for weeks.)

My uncle, Mike, got to come along to the lunch at the park, too.  He was another reminder of how much can change in one year.  Last year, he walked the walk with us.  This year, his body was too weak to participate. It puts things into perspective.

Life is fragile.  Our bodies are fragile.

Pictures from the walk:

Group Photo (minus a few):  "Raisin' Dough for MS"

Starting the Walk...

My niece, Mariah and my mom.

My sister, Kara and me.

So many people out to support the cause.

My niece, Aleigha, stole my boyfriend for most of the walk.

2 of my favorite people...

Aleigha was manning the camera most of the walk.

My cousin, Tiffany.

My cousin and one of his kids.

My cousin's other kid, Ashley.

Aleigha liked the police.

We all got spread out real quick, but we were easy to spot with our purple shirts.

Some of the kids, taking a short break at the park.

Aleigha, her daddy, Kenny, and Israel.

Aleigha sweet-talked the cop into a photo-opp.

Me and my brother-in-law, Kenny.

My mom and Aunt Shauna.

Family friends, Lisa and Laura Lisonbee and Aleigha.

Kenny collected the medals.

Thanks again to everyone who came out to support! 

Solo Success

I've always been an incredibly hard worker.  It didn't matter what it was I was doing at the time-- if I didn't have a full plate, I was lost... even now with MS breathing down my neck, I still try to do it all.  My family, friends and doctors are all telling me to slow down.  But I can't... because if there is one thing I like more than keeping busy and feeling like I'm doing good, it's winning.  If I slow down, the disease wins.  I can't have that.

Tonight went fabulous!  I worked all day at the law office, came home, packed up my stuff and put on my Slumber Parties face and headed to a girl's house for her party.  I wasn't expecting any kind of mindblowing night, but I always have a good time doing this "job" and knew that it would be at least decent enough.  I fought the exhaustion and extreme urge I had to kick my feet up and relax when I got home... and as soon as I fought it up 3 flights of stairs with ALL my party stuff (4 duffle bags, a folding table, an incredibly heavy gun case, 3 garment bags of lingerie, 2 carry-on-type bags, and my purse), I found the energy to do what I love to do:  Slumber Parties!

I thought it might be an early night for this party-- this group of girls has typically been my Saturday afternoon party girls-- noon parties only, until tonight.  But we kicked back and laughed and had a great time!  The hours grew longer and later... and then, my girl I had talked to about signing up to do Slumber Parties at the last party was ready to go!  She was ready to sign up tonight!  So we filled out her paperwork, got her signed up and ready to go, and voila! New distributor! TOTALLY unexpected for tonight's party! (I knew she'd sign up eventually-- that girl has Slumber Parties written all over her-- I just had to put her in front of a mirror first. 

I got home about 1:30 a.m. and was feeling fantastic!  I was exhausted, but running off the adrenaline of a good party and a new recruit... excited to have had such a successful night.  And apparently... along those lines, I did something wrong.  Israel took the wind right out of my sails when I walked in the door.  Suddenly, I felt like I had done something wrong.  I asked him how his night was and he responds, "How do you think my night went? Put yourself in my place and tell me how you think my night went."  Needless to say I was caught incredibly off-guard and couldn't even respond.  (Good thing I can count on my sister to answer her phone at 1:30 a.m. so I can talk about how awesome my party went... or I would have been even more hurt by his melancholy.)

So much for sharing in one's successes. 

I didn't even bother asking for help unloading the car at that point.  I made it up and down 3 flights of stairs... I can definitely make it up my front porch. 

I shouldn't be so bothered.  But I don't get it.  This is who I am-- I work HARD for what I have.  I work HARD because I have to. 

This is who I am.  This is who I will always be.

Not even this disease can keep that from being true.

Fiending

I got a phone call from my insurance company the other day... I'll back up:

My doctors have been fighting to get me on a drug called Provigil for nearly 1 1/2 years now... and to no avail.  It's too expensive a drug for the insurance company to willingly pay for, and it has not been "approved" for use for MS patients to manage fatigue.  So for the past year and a half, I have been in the drug trade-- seeking people who have the drug and don't like it so they'll give it to me! (More on why it's fabulous later...) So, in all my recent tests and excitement, one good thing occurred:  I was diagnosed with narcolepsy!  Initially you might wonder, Why is that a good thing?? Well, it's not, per se. BUT-- ultimately it does mean that I have a paved route to that drug, since it's commonly used to treat those with narcolepsy.  So after 1 1/2 years of fighting it, I have a new roundabout way to my drug.

Back to the phone call.  The doctor told me he would call in a prescription for me the day that he called to tell me the news.  So you can imagine my shock when I got a phone call from the insurance company later that afternoon telling me they had denied the drug.  Upon further questioning, ends up she was calling to deny my other doctor's request for it-- not the sleep doctor.  But it did put me in the preset mind frame that perhaps this new diagnosis was not a nice and straight paved path... it might just mean no machetes were needed to navigate it.

So then yesterday, the insurance company calls to inform me that the medication was denied until I try a different (cheaper) one first. "Like what?" I asked.  The answer:  I don't know-- something amphetamine-ish. Basically, they want to give me speed.  I laughed.  The poor girl on the other end. "Unless your doctor can give us a good reason why you shouldn't do those ones first, then you will need to try one of those medications first." 

I can think of 10 good reasons-- and I'll talk really really fast while I tell you!  Isn't that good enough?

I am a Provigil-fiend, apparently. 

Just give me my drug.

New for 2010

The past few months have almost been a blur of activity.  After dodging the neurologist for a year (yes, dodging), my boss finally put his foot down as a "concerned" individual and made a strong push for me to go to the doctor.  My work performance was slacking, my energy level was down, and I imagine I was just not that pleasant of a person to be around at work.  So, finally, I decided to appease him and made an appointment for my neurologist.  (I'd be lying if I didn't admit that I was trying to appease him so I could get a bonus.)

That push to revisit the doctor TOTALLY backfired on him... seeing as it's 3 1/2 months later and I am still finishing up follow-up appointments and trying to stuff the pieces back into Pandora's box from that appointment.  Since it had been a year since my previous appointment (I kept slipping through the cracks... willingly), I had to have the full workup-- bone density scans, blood tests, brain MRI, C-spine MRI, chest x-rays, and a sleep study (for fatigue).

Not entirely surprising, the doctors found new lesions on my C-spine and brain.

Surprisingly, the sleep doctor diagnosed me with narcolepsy. (Really!? I laughed, too... just my effort to be incredibly original, as a friend put it to me.)

Other changes?  Well, aside from randomly falling asleep, a new suspicion of dyslexia (it must be the new lesions), and a boatload of new medical bills... I have a new boyfriend that is getting barraged by all of this all at once-- what better way to test the strength of a relationship, eh?

Life. It's a trip.

Intro-- half way through.

I've realized it's hard to just jump into the middle of a story -- even if you're the author.  I have this need to fill in the blanks for everyone as I go.  I need to get over that or I'll always be telling a story off of memory.  And let's face it-- my memory SUCKS!  So in order to compromise with myself, I have posted some of my older posts from a different blog in a slight attempt to fill in the blanks.  The rest will be done as the thought occurs for the most part.

One day, I will write a book-- and because I'm not a chronologically thinking person, the book will not be chronological either.  Maybe this is good practice.