As I Hirple Along, Singing a Song: Updates on Cows, Disability, Unemployment and More….

I was just reading some past posts and figured anyone following this blog must be dying for some follow up info, so:

1. 10 cow headbands almost drove Anna mad. She made them, she grumbled, and now we’ve gotten  an order for monkey headbands. I kid you not. The good news is the horseheads sold, as did 8 others in addition to the custom order cow headbands, so now we are both getting ready to retire. Monkey headbands, really? This is the gravy order, no doubt.

2. The follow up to the solu-medrol is a new prescription for a muscle relaxant called Baclofen which apparently is specifically for MS patients who hirple. I just started it and will post as I progress…but I think it might be working already ~ I WALKED .60 MILES TODAY with only a walking stick! This is huge and I am happy!

3. Arizona sent me a letter confirming that I cannot get unemployment as I am disabled. Huh. Ok, so with no Fed decision yet, I am getting exactly ZERO help from any of the entities that I have paid into for 35 years. Something feels very wrong with this system.

4. Believe it or not, I found fresh Dungeness crab at the Tubac Market last night and as it is one of my favorite things in life, I bought one as a treat. Last night was the famous Lopez red sauce with a baguette and sauteed spinach, tonight is a carrot soup with Dungee crab…can’t wait for this! In the process I found this really cool food blog. Here is the recipe: http://butterpluscream.blogspot.com/2010/02/carrot-soup-with-dungeness-crab.html

Newly Diagnosed

I’ve been here in California for the last week and will be coming back regularly for the next few months, so if my posts are sporadic that’s why. I’m back doing Dr appointments with both Dr G. and Dr S. and will report on those visits soon.

Elizabeth took the day off from driving the ambulance to spend the day with me (bless her heart ~ it makes these Dr. days so much more fun) and during the course of the day she told me her friend’s girlfriend was just diagnosed with MS last week. She is in her mid 20s. Her friend (let’s call him Cody as I can’t remember his name) told Liza he was so scared, and she said to him “you’ve been reading everything you can find, huh”. He confirmed they’ve both been Googling like mad.

It’s a fine line. Newly diagnosed, you want to find out everything you can and education is critical in dealing with your new condition. I did the same thing and read books like the catheterizing MonSter ladies book and it terrified me more than I already was.

I’m glad I don’t travel much anymore because the hype about bed bugs alone is enough to keep me from ever sleeping anywhere ever again. I’ve already burned my suitcase, all my coats and my bed because as the news reports, they are everywhere! I’ve started brushing my teeth 4 times per day for 2 minutes each time as apparently bad gums will give me a heart attack. I need to consider going braless as my bra is restricting my lymph nodes and raising my risk of breast cancer.

You get the idea. For the newly diagnosed I don’t even recommend reading this blog. The whole bladder Botox thing, the scooter, the steroid infusions…it is all scary shit! When it comes in a natural progression you’ll discover how resilient and strong you really are.

My advice: take a deep breath, read at a gentle pace (unfortunately, you’re in it for the long haul…plenty of time to research), process slowly, go have a long sleep, and don’t let the bedbugs bite.

Roid Rage

I went for the usual visit to my neurologist in LA over Thanksgiving week: walk on tip toes, walk on tip toes backwards, walk heel to toe, walk heel to toe backwards, close eyes and touch nose, determine soft (a Q-tip) from sharp (a safety pin), jerk around from the little rubber mallet hitting knees and elbows. I always imagine this is what getting a drunk test must be like. It seems to me that a big disease with it’s own initials  (MS!) should have a more intricate and serious seeming examination to go along with it. Q-tips, safety pins and rubber mallets seems so amateur somehow…like we’re just playing doctor patient.

So, when Dr. S. suggests I go for a steroid infusion treatment (since I  didn’t do so well on the walking parts of the test), I’m happy to play along with the game. 3 hours a day for 5 days getting a slow drip of something called solu-medrol, sure!

The first day was cake. I snuggled into warmed blankets and watched I Love Lucy reruns while eating the proffered snacks from a little basket and drinking fresh hot cappuccino made on site for me by the nurse on duty. This place in Pasadena is a 5 star infusion center!

Day 2, again, not so bad. It being Thanksgiving Day, I was moved to a different part of the clinic without a nurse dedicated solely to my whims, but I was in the glow of actually having been able to stand on one leg without falling over last night. Victory!

Day three. My friend Kate came by and we got to catch up which was great. I regaled her with stories of how I had played Cranium with some friends the night before and was able to actually act out the “break dancing/belly dancing/line dancing” card! Geez, I can’t even remember the last time I was break dancing. All was going well.

Day 4, Anna came with me and we ordered in Thai food and played with embroidery thread (totally different story). I started getting pretty tired of being hooked up to this infusion bag and beginning to feel just a little bit grumpy.

Day 5. Enough already. Get this f$%*ing bag outta my arm. No thanks, I don’t want any of your stupid snacks. I already had coffee this morning, thanks. I ended up playing Angry Birds for 3 hours and then fled.

I spent the night over at Elizabeth’s house, and then got up early for the drive back to Arizona. I had a good book on tape and there wasn’t much traffic, so the drive home was uneventful. I got back around 4, had a shower and fell dead asleep around 6. Imagine my surprise when I awoke 14 hours later! I thought steroids caused insomnia!? Well good on me, they had the opposite effect.

Despite the long sleep, I woke up in one very bad mood. Apparently, major doses of steroids like I had just been through causes your body to stop producing them naturally (I know, I know….you’re thinking geez, Erika, you didn’t look into this before? No, I did not. We were just playing doctor I thought). This predicates the need to give one more artificial steroids in the form of Prednisone.

Prednisone is one nasty drug. I spent an entire week shut inside, unbathed, sneering and plotting ways to maim things ~ my friends, my cats, my car, my couch ~ anything. I just wanted to…well….maim something. I stopped answering the phone. I stopped showering. I stopped going outside. I stopped reading. I finally called Dr. S.’s office and explained that my former sunshiney self had abandoned me and that I had become nothing but an angry maiming plotter. He prescribed Ativan.

Oh boy. Now I was playing in the big leagues. Solu-medrol. Prednisone. Ativan. I don’t like taking any medicine beyond red wine. I do the daily injection of Copaxone and I figure that’s plenty. I opted to skip the Ativan, finish the weaning off the Prednisone, and go back to red wine.

Now a month later, here I am, still not walking all that steady, but back to my old happy self. I’ve realized that although MS has been roaming around my proverbial house for over 20 years, this last “treatment” gave it a prominent seat at the head of the table and quite frankly, it pissed me off. I will give  MS it’s due and respect that it’s here, but also firmly request that it stay off the center stage.

Welcome

Hello, my name is Erika. Welcome to my blog! You’ve probably guessed already, that I have MS. (Who says we’re losing cognitive skills!?) The world might not need one more blog (ya think?), but I’m doing this for me. If you want to read along, welcome!

I’m 52 and live in La Crescenta, CA. No one had ever heard of La Crescenta until last month when the largest fire in the state’s history tore through here and we made national news. I live alone with 2 cats, Clark and Cleo; and have 2 grown daughters, Anna and Liza. I have a wonderful mom who is 89 and going strong; an older sister in Seattle, an older brother in Northern California and a total of 4 nephews. Ok, now you know all about me.

Oh yes. The MS thing. I had some very weird thing happen to my right eye when I was about 27 years old. I went to the Jules Stein Eye Institute here in LA because they thought it might be a detached retina. Hmmm….no. Maybe it’s this? Hmmm….no. Maybe it’s that? hmmmmm….no. So I was sent off to see a neurologist who pricked me with pins, hit me with rubber mallets and sent me home perplexed. Back in 1984, MS was not so prevalent? Easily diagnosed? I don’t know.

Fast forward to 2000. I’m jogging around the high school track with my young teenaged girls. Sweethearts that they are, they start teasing me for running like a 90 year old man with a dragging foot. Shaddyup! But they do have a point. So, like any well adjusted American, I quit running. Never did like it anyway.

Now it’s early 2001 and I’m up in Seattle visiting Lisa. We decided to go on a nice walk around the arboretum (it is lovely ~ go if you get the chance!). It’s an easy, flat walk, maybe a couple of miles. As we get back near her house there is this little gentle hill about two blocks long, and I tell her I can’t make it and need to rest. Did I forget to mention that Lisa is on her way in two weeks to run the NY Marathon? That’s she’s sailed through the Boston Marathon, like, 3 times? Needless to say, my sister becomes just a little bit alarmed. So on her gentle urging (YOU BETTER GET THAT CHECKED OUT SIS!) I went to my doctor. He sent me to a neurologist. The neurologist sent me to the MRI. The MRI sent me to the lab. The lab sent me back to the neurologist. He finally gave me something. A diagnosis of MS. WTF!?

October 19, 2009

La Crescenta, CA