Archive for the 'MS Basics' Category

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.

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.

Every winter I end up with bronchitis or some insufferable chest gooey nasty phlegm related sickness. This year when I started dripping, as I do, I started taking Claritin D. Helped with the dripping and my chest felt better to boot.

Interesting side effect was decreased injection site reactions, fevers, general malaise … in other words my usual Rebif “flu-like symptoms”.

Word on the electronic street is that the antihistamines combat the slight allergic reaction some people have to the immuno-whatever that is Rebif and the like.

So, if you’re like me, check with your doc and try it out. All of a sudden I had energy. Cognitive clarity didn’t improve noticably but I was able to do things.

The down side is its drying my mouth and eyes so I’m trying to work out a schedule that helps the icks and keeps everything moist that’s supposed to be moist.

For over a year I’ve been a huge advocate of the Rebiject, also to refered to by someone much wittier than I as the auto-inflictor. It’s a fast, easy, non-scary way to inject. Load the gun, put it against your skin, press the button and the jobs done. Mary Poppins just floated through my brain there. Song “Spoon Full of Sugar” for any Poppins-heathens out there… of which I know you exist.

The least painful spot for the injection is my tushie. It’s an ample area plush with fatty tissue. Perfect for injections. Added bonus is I’ve lost a lot of sensation in those orbs. Super bonus is my husband gives me the injections.

Problem is, with the Rebiject the red circle from the injection is almost half an inch larger than a manual injection and the injection site reaction sticks around for weeks longer. My tush isn’t plush enough to handle that.

Here we’ve got my thigh. Two large red circles and one white one. The white one is from the lidocaine (topical numbing agent). The red circle closest to the camera was over an inch and a half in diameter and lasted over a month.

So I’ve started manual injecting. It stings a whole lot less. Some nights I can’t even tell I’m injecting. The hardest part for me is jabbing that needle in. Especially in my stomach. I’ve got this large hang up about my soft under belly and how unprotected it is. But, we do what we have to do. Marc, my wonderful husband, still goes with me and lends his immoral support while I jab myself. If my hands are too shakey from tremors then he’ll suck it up and do it. He doesn’t know that yet… shhhh, don’t tell him.

You need to get MRI’s and blood work pretty regularly. Your neurologist will want to review these at your 6 month or annual appointment. This means you will have to do the tests prior to your appointment. You can either;

1. get the orders for the MRI and blood work at your appointment for the next appointment
2. call your neuros office a month prior to your apt for the orders

Because my neuro wants the blood work done every three months I have the work orders. Then all I have to do is go to the phlebotomist, hand over the paperwork and get stuck. The MRI I call the neuros office for. Its pretty easy since I go to a clinic (Virginia Mason).

When I was first told that I had to be injecting medicine 3 times a week I was ok with it. Medicine I know where to get, Mr. Pharmacist is a nice person. But where do I put the used syringes?

I asked my neurologist.
I asked my neurologists nurse practitioner.
I asked my pharmacist.
I called my pharmacy’s Specialty Group and asked them.
I called MS LifeLines - my medicine support group and asked them.

No one could tell me what to do with my used needles.

One person told me to just throw them in with my regular trash, another told me to save them up somehow and take them to the hospital. They were all wrong.

On a lark I went to the website for the company that collects our garbage. They knew what to do with my used needles. Its even on their web site. Moral of the story check with your garbage company or health department.

Chinese Hampster Ovaries. That’s what Rebif is made of. American hampster ovaries are not good enough, no. We must import these little gems of medicine. Besides, PETA would probably object. I don’t think they’re performing hysterectomies on the little rodents so PETA would definitely object.

Every time someone says Rebif I flash to two movies; Sixth Day and Back to the Future. Re-Pet meets Biff. Scary combo, it does make the shots easier to take though.

Enough frivolity. Things you should know about Rebif.

• If you are female your menstrual cycle may change. Mine has gotten lighter and shorter, and the horrible cramps have almost completely left.
• The chances of your injecting sites looking like a bee sting is pretty high. A bad bee sting. Mine are about silver dollar size and progressively get darker, redder and angrier looking. Some, especially in my thighs, form hard bumps that dissipate over a week or three. I’m told this is normal.
• Talk to your doctor or nurse or whoever, in person, about where you can inject. If you have a close friend or spouse ask about your entire tush. Ask about the back of your thighs, saddle bag, any area that has some meat on it. Serono gives you some very limited options. You will need more if your injection sites last a couple weeks and the discolorated area is large you’re going to run out of Serono approved areas. Fast.
• Talk to your neuro, nurse whoever you trust that has medical knowlege (sorry, psychic hotline is out) about needle depth. They want you to use the deepest needle depth. I find shorter needle depths less painful. But talk to your doc about this!
• One word. Lidocaine (aka EMLA). People suggest heating the targeted injection site, or icing it, or rubbing it, or or or or. Forget all that. If the injection bothers you numb the area with Lidocaine, available from Mr. Pharmacist. It’s a topical numbing agent. It will not completely numb the tissue the medicine is being injected into.
• The auto-injector, refered to by someone wittier than I as an auto-inflictor, is an awesome device. Awesome devices make life easier but have draw backs. It injects the meds much faster than you would manually. This has been known to cause worse injection site reactions. It also makes the injection sting a bit more. However its wonderful if someone is giving you the shot. My husband gives me every injection. He isn’t able to jab me, we’ve tried, so the auto-injector (Rebiject) works perfectly for us.
• There are many suggestions on how to deal with the aftershocks of the injection. These include, but are not limited to; rubbing the area with a clean cotton ball for 2 minutes after the injection, using a heating pad on the injection site for a few minutes to half an hour, injecting a softball and throwing it at someone you aren’t fond of. Rubbing the site does feel good, I don’t like the heating pad and Rebif is a wee bit expensive to go beaning someone with although I’m reserving that for the next jerk of a doctor I deal with.
• Take your shot out of the fridge as early as the morning of your injection. Taking the chill out of the med helps the medicine go in - with less screaming. update: Serono is now saying you can take the shot out a week in advance depending on how warm your home is. I personally like keeping the shots in the fridge and taking them out the morning of. Habit. Means less things to remember. That’s good because I have MS.

Serono offers several items to Rebif users. Travel cases, injection journals, all sorts of stuff. Take advantage of these offers, the travel case is really nice.

So… now you know what to call all those mystery problems. Great. Now you’ve got a clear path for medications; oh how the pharmaceutical companies and drug stores will love you. But what do you do now ?

First, don’t panic. Second, you don’t have to read every bloody thing out there about MS and become a biophysicist or neurologist. It’s not important that you can have a conversation with your highly trained neurologist in the terms they would use in a published paper. Third, sit back and relax.

What’s detailed throughout these pages is my personal travels through this disease known as MS. The little things that people let slip through the cracks and the not so little things that really deserves an answer.

Added March ‘06:
Want to have a little fun with MSer’s like you? http://www.mschatter.com.