Yesterday, August 19, 2008, I took the first pill in the drug trial. Excitement, fear, curiosity. It’s like looking at a stack of presents and wondering if any of them have the one thing you really want.

Some of the potential side effects include a slowed heart rate, light head, nausea, yada. These are all things I read way before signing on and getting accepted yet none of this was in mind yesterday when I took that first dose. And all of them were things I experienced. It’s very possible that my head is causing all these symptoms from a placebo.

In many ways this is like pre-diagnosis. Is it all in my head or is it real?

Either way I really like the staff at the MS Clinic and feel very comfortable there. None of the usual trust issues are coming into play.

On Saturday (3/22/08) the left side of my face went kaput. No smiling, no facial control. Blinking is in slo-mo and the eyelid doesn’t reach all the way down. This might not sound that big but if you don’t blink your eye will water. Now try that one on for size and see what it does to your already off-balanced brain. Also eye movement isn’t coordinated. Picture synchronized swimmers with one being a couple beats behind.

I got tired of dribbling fluid down my chest so started in with straws. Morning coffee should not be drunk via a straw. It’s wrong. If you don’t understand why its wrong you aren’t a coffee drinker.

Woke up this morning (Monday) and found I could smile a tad on the left side. Whoop baby! Happiness is being able to grin, and not that lopsided shit.

So I called and left a message for the fabulous neurologist. There isn’t much that can be done and since I’m already improving I’m not going to be jumping on the steriod wagon. But, as far as new symptoms go this sucks.

During all this powerchair pre-auth stuff I was told about a Case Manager (Care Coordinator). Someone at the insurance that handles all your claims. Supposedly this simplifies authorizations for things since any requests/claims are sent directly to this one person instead of the general pool.

Called Regence, my insurance, to ask how to get one. After bouncing from person to person and being on hold I was told I could get one if they deny my request for a powerchair. No, I can appeal their denial. Then I can request one. No, then one may be assigned but its unlikely.

Total cluster. Every time the Regence rep said then I could request one she’d contradict herself and say I couldn’t. And I’m the one with the neurological disorder.

Stop playing with my head!

Lately I’ve been using the scooters at the stores. All I can say is its the only way to shop! They’re a little difficult to use since they’re so big but all in all I can shop without needing a 12 hour nap afterwards. Browsing isn’t easy, scooters are very close to the ground, and other shoppers tend to freak when they see a scooter. On the upside the other shoppers freaking means they get out of my way and let me go ahead of them.

Weirdness at Costco. In the scooter, waiting for Marc to check out, the lady in front of us was wearing a gorgeous knitted sweater jacket with a hood. I compliment her on it, tell her I’ve been looking for one like it. We talk about it and then she smiles and says she’d give it to me if I’d accept it. Uhm, it’s see-your-breath weather and you want to give me your source of warmth. Off your back. Thank you but that’s a little too nice for me. Rich lady, real sweet. Made me want to tear up because there are people like that.

Thought for the day: Smile, you never know whose watching.

Back in September it was decided by my husband and me that my mobility is shaky at best, death defying at worst.

Onto the net I hop, where I can still be as active as any teen and no one knows that I’m really typing with only six fingers. Immediately I gravitate to scooters because they look cooler and give off a less disabled look than a powerchair. I see some mighty fine scooters that are easy to imagine beneath me. I feel the power. I feel the freedom. In my minds eye I see my teen dream of being a bad ass biker bitch with a smokin hog. Yeah.

So off to my physical therapist, Laurel B., to discuss options and solutions. I love my PT lady. She’s awesome, kind, considerate and has one of those personalities that makes you feel safe in a wholesome granola way. That was September 10ish.

She nixes the idea of a scooter. Crash. Heart plummet. Want! Can’t have. *sob*

All of her reasons for prefering a powerchair over a scooter are very valid. My shoulders screwy, it does take a little more cognitive and reflex action for a scooter versus a chair, with the numbness in my hands its harder to tell what they’re doing, etc. That and scooters have a bigger footprint than a chair. Scooters can’t be outfitted to recline, have head supports, leg rests, etc. OMFG am I going to need all that?!

We spent almost an entire hour going over various options for a powerchair. And we could have kept going. This is not something a person should jump into without warning.

Laurel refered me to Clark at CareMedical. I like Clark, he’s in a chair and can answer questions honestly from an end user perspective, which is what I want. Its nice to hear what learned professionals THINK, it’s better to hear what someone whose been there KNOWS. In my never humble opinion of course.

Around October 4th we finally got down to CareMedical to talk to Clark. He had me try out some different chairs, take them for spins around the showroom floor (no joke). It was almost scary how quickly I got comfortable with it. Some of the chairs were simply too bulky. They made me feel fat. If you laughed at that you aren’t a woman.

On October 20th CareMedical delivered a ‘tester’ chair to the house for nearly a week. One word. YES. It took some doing to navigate around the house, and many area rugs were removed, but toward the end of the preview I was really getting accustomed to the power.

A word to the wise, be good at spackling or at least know someone who is. It takes some patience and time to get used to how ‘big’ you are when you’re in a chair.

I cannot explain the impact that had on me. I was clearer in the head (less fatigued), was in a better mood, wasn’t in as much pain and was more aware of ME. Anyone whose had chronic pain understands that last part. ‘Twas a sad day when they came and picked the chair back up.

Beginning of November the insurance sent us a courtesy letter asking for further justification.

A) Current chart notes/H&P/physical therapy evaluation or chart notes, if available documenting the member’s mobility status as well as physical capabilitiess, limitations, and strength testing of upper and lower extremities and the member’s endurance status.
B) How many feet, if any is the member able to ambulate?
C) What ADL’s is the member not able to accomplish without the use of a power wheelchair?

ADL = Activities of Daily Living (food, bathing, bathroom, etc)

So tomorrow I’m off to see Laurel to make sure they have all this stuff. Over the past few weeks my right leg has gotten so wonky lifting it isn’t always possible. Weird muscle fatigue issue or something.

Update, 12/7/07
Saw Laurel. She is truly wonderful. Gush gush gush. For some reason she never got the letter from the insurance.

It was all for the best though, my right side has gotten significantly weaker since last we did any tests. Push, pull, resist, ack!

She showed me an awesome yoga stretch for my shoulder. HOLY COW! It’s so so so much more than any of the other stretches I’ve been doing.

Update: 12/28/07
Regence sent CareMedical the denial of claim letter. I never got a copy. CareMedical may or may not have gotten their copy. Clark didn’t seem to know anything about it.

Update 1/9/08
Laurell faxed me what she sent Regence. According to those documents I qualify for the powerchair. Aside from her PT eval there was also a recommendation from my physiatrist.

Update 1/16/08
Called Regence and appealed. Couldn’t get any information from them as to what papers they actually got. They did send me (eventually) the rejection letter originally sent to CareMedical. The appeal letter wasn’t written yet so I didn’t get that.

Update 2/4/08
Called Regence to ask where the hell my appeal letter is. The appeals panel is still reviewing my paperwork and they haven’t achieved a thought yet much less a decision. So the clerk on the phone is sending me info on what happens with the appeals process and all that good stuff.

Update 3/3/08
Regence again has got less than their required allotment of clues. Apparently the appeal was sent to Level 2 Appeal, not the expected Level 1. So its been shuffled back and forth between those two departments each saying, “Not enough medical data to support claim.” Uh huh. On hold with them now while the helpful Clueless At Regence Customer disService Member tries to figure out wtf is going on with my claim.

So I’m told that chances are good that I’m getting denied the powerchair because there’s no medical documentation that says I couldn’t use a manual chair. From the inferences the rep gave me the insurance wouldn’t have a problem with a manual chair. What ever. So now its back to getting more charts and notes and and and dictating why I couldn’t handle rolling myself around.

MS anyone?

Oh, and the first level appeal was denied.

Shock

Gasp

The time has come that I need a bath chair. Oh the joys of having one more wet piece of bathroom to regularly clean. I am so looking forward to that.

We already have a decent hand held shower head. If you don’t have one, get one. I can’t say enough nice things about ours. Not only does it make cleaning the shower easier it also makes bath time fun!

The initial problem is how to fill the prescription for it. Its an odd thought, getting prescribed furniture. Whilst talking to Clark at CareMedical about the powerchair, more later on that, I asked how to fill it. Turns out he can fill it for me. Whoop baby!

Bonus to having Clark fill it is that they’ll deliver it. NICE. Down side is they don’t carry one that folds up like I wanted. Not that I care that much, I’m simply looking forward to not having to sit on the shower floor anymore and then struggle back to my feet when bath time is over.

As the shower chair story unfolds I’ll post more about it.

Update: 12/14/07
Got a call from Clark’s assistant. She wanted to verify my home address because they’re UPSing the “bath chair” out to me. Yeah baby! With this being the time for giving, and the chair coming via UPS, I’m rather tempted to wrap it and put it under the tree. Giving the gift of safety.

Update: 12/18/07
YES! (said in best Brain voice) I got an early Xmas present!

YES!

Totally adjustable and with cute little holes everywhere so the damn thing drains. *sigh* I know its still going to mildew, I can feel it. But, small price to pay to safely clean yourself without the threat of putting your body through a shower door.

Thought for the day: There’s a line people cross from being righteous to being a righteous pain in the ass.

Most people start out with a cane. There are a huge amount of varieties and handles and options. Before you start net shopping go and handle a cane, see what handle feels the best to you. I’ve a preference for the derby handle, although the offset is looking more ergonomic.

Derby handle

Fritz handle

Offset handle

Palm grip handle

Crook handle

There’s all sorts of goodies to get for your cane too. If you live in a snowy area you may want to consider getting an ice pick attachment. Neat little thing that you can put on the tip of your cane when its slick out. Fully removable and some can flip up so the rubber tip is there for indoor use.

I strongly recommend a wrist strap, at least at first. The number of times my poor cane has gone THWACK because I dropped it is innumerable. Nothing worse than dropping your cane and having the hordes of other shoppers stop and watch to see if you tip over. I am not a cow.

There’s right and wrong ways to use a cane, or so the experts say. Honestly I couldn’t give a rats butt. If you’re comfortable with how its working for you then go for it. If you encounter problems, go see a physical therapist. I suggest seeing a PT not because getting training on how to use a cane is important, IMO, but because they may have a better suggestion for you.

In some ways walking with a cane is like learning to walk all over again. Lowering, humbling and frustrating as all hell. On the up side you’ll always have something handy to hit idiots with.

One final suggestion, for your first cane get something durable. Its going to take some abuse as it gets incorporated into your life. That gorgeous antique cane is not a good starter.

August 31st - MRI
Yay, I love MRI’s. Sarcasm off. They aren’t bad, I’m not clausterphobic or anything like that. What I dislike is the contrast. As long as its injected slowly I’m fine. Too fast and I hurl. I warned the lady and she ignored me. So there I was frantically smashing the ball to get the freak out of the tube before I aspirated some stomach contents. Why is it that the medical peoples don’t like to listen? 2 out of 4 MRI’s with contrast have resulted in me displaying the contents of my digestive tract.

Sept 4 - Neuro and Physiatrist
New physiatrist, he is awesome! A little old school but I really liked him. He made some suggestions which on the surface make sense but aren’t exactly feasible. What I like about him is that he tries things out before recommending them and he’s not script happy. Old physiatrist was all about writing the scripts and getting you out the door as fast as possible.

Neuro went over the latest MRI’s. Found one new lesion, not surprising, but also discovered that my spinal cord looks a bit better! YAY!

Sept 10 - Physical Therapy
My PT lady is also really cool. She’s relaxed some since I saw her last (almost two years ago). We spent the entire hour going over what the physiatrist recommended and options for a power wheelchair. She recommended against a scooter due to my various problems (not enough sensation in my hands and rotator cuff tear). TONS of freakin options!

It’s true. Need to get them cut, probably go in tomorrow to have some nice stranger fondle my feet. I find it so much easier to have someone else cut my finger and toe nails. Don’t always have enough strength to cut through these thick things at the end of my wiggly parts. Don’t want them painted though, that tends to annoy me.

Update on the spasticity… not good. Right leg is still curling involuntarily. Tried to use some heat therapy on it last night. That sorta helped the muscles but sent the nerve pain over the edge. So 5mgs of valium and still a tossing sleepless night.

Today isn’t much better. The weather is either warm or freakin freezing my nips off.

The Harry Potter book is on its third day. Yeah, I know. A real fan would be done with it by now. Especially a real fan who doesn’t go out into the world. Bah.

Thought for the day: You can mail order fresh food, meats, dry goods, clothes, electronics, brides and so much more. At what point will our society become so lame that there will be mail order babies?

Last night I took my normal Aleve (shot night) and topped it off with 100mg of neurontin and 2.5mg of valium. Yet I still wake myself up moaning in pain. I’m not doing drugs right if I wake myself up. Supposed to wake my husband up, that’s what he’s there for, right?

Back of my right leg was curling, lovely sensation that. Today isn’t much better. I stretched, unthinkingly, when I woke and went into another spasm of muscle pain spasms. Bad wording that.

The last Harry Potter isn’t holding my attention. Not that I’m surprised by that. If I was ‘normal’ the book would have been finished the same day I started it. Not gonna happen. Its boring me, very unusual that. Attention span is short, mood is short, I am short. Don’t eat my feet.

Tip for the day: Be aware of your surroundings. In my case that means beware.

Fatigue hits me three ways:
Energy - Sloths move too fast for me to catch. Raising a finger is a monumental task. Don’t even think about picking the nose, that would be impossible.
Alertness - you could throw a ball right at my face and I might notice. After I got hit by it.
Willingness - My get up and go got up and gave me a raspberry before traipsing out the door to party like it was 1999. Without me. Ungrateful basta… ah, who cares. Takes too much energy to get riled.

Think of fatigue like pain, there’s different kinds and different intensities. Fatigue can hit you whenever and wherever you are. Getting out of bed can lay you so low that getting back into bed is too much to ask of you, the floor is closer and looks comfy enough. Weeding that garden can be an achievable task until you sit down to admire it only to realize that you’re drooling on your chest and that sound that woke you up was you snoring. Here’s praying your neighbors are nice and didn’t get any video for YouTube.

Your energy is like a $50 bill. You’re playing tourist in a cool city and that’s all you’ve got to spend each day. That needs to cover your lodging, food, trinkets and anything else that comes up. Because you have a magic pocketbook every morning when you wake up there’s a crinkled $50 in there, anything you saved from the previous day has magically disappeared.

Budget your day. I can’t stress that enough. Planning what you’re going to be doing that day and budgeting not only your time but your energy is the only way to make it through a week. I’ve stopped planning weeks ahead because I’m not able to meet those commitments. I’d rather have a dirty tub for an extra few days than feel like a loser because the day I planned to scrub it down was a bad day for me.

Medications
Ah, Mr Pharmacist. How I love thee. Let me count the pills! Here’s my take on what I personally have tried. Your reaction may vary.

Provigil
Very mild. It kept me awake but didn’t instill me with profound energy or willingness. I was mildly more alert than normal.

A lot of people can take this without feeling like they’re on speed. There wasn’t any brain-crawl sensation, no jumpiness, nothing like that.

In my ever so un-humble opinion this drug works best for mild to medium cases of fatigue.

Ritalin
The speed of anti-fatigue meds. My brain buzzed and my heart did an ocassional flutter but generally ritalin was well tolerated. There were some mild emotional disturbances with this drug - I was much more irritable.

A mild dose of speed never hurts for medium to severe cases of fatigue.

Amantadine
This is a low side effect drug. Helps with muscle fatigue ONLY. Muscle fatigue wasn’t covered above because I’d never, until now, experienced it all of a sudden. By all of a sudden I mean there wasn’t any activity that caused it. Your muscles can fatigue quickly or be in a state of perma-fatigue.

My biggest complaint with it is the appetite suppression. For some that wouldn’t be an issue, for me I dislike eating enough as it is. Small hurdle in the grand scheme of things.