MS

Get Over It?

I have been reading several blogs with the main topic of MS. It strikes me each time I peruse them how many times I find someone writing about something that hits home, has been bugging me, or some topic that I just could not figure out how to share in a way that would make sense.

Seems I am not the only one sick of this deal called MS. Nor, am I the only one that has figured out that the only winners here are the drug companies as they collect a min of $1,500.00 a month from each person on their no generics allowed crap.

It is good to know that being accused of being drunk is “normal” now there is a thought – I have not drank alcohol in over 25 years – so it is now “normal” that folks at the bookstore think I am drunk as I try to make my way around.

Last week I woke up and for whatever reason had no balance and trying to walk was comical. The only good thing was I actually had an appointment with the neuro in that time frame. I admit that I (as I am told) am a stubborn one in certain things. Did it even come across my pee brain to mention this to the Dr.? nope but my partner just ever so had too. This ended with the doc making me walk down the hall outside the exam room. Woo hoo – I put on my concentration hat, started down the hall, I was making it! Then “ok, ok, stop before you hurt yourself” comes echoing from behind me. What I am doing so well and as I here everyday – looking so good. LOL err…. I thought I was doing alight. Guess not, Now I get to go to the physical rehab whateve guy. The good thing is most of my balance is better now, and I  can make it about wall-less. So, I might escape the “lets show you how to use a cane” deal. Crossing fingers.

On the other hand when one thing works something else seems not too 🙁 those pesky lesions in the brain and spine make life interesting. If I see one more NMS video of young happy people smiling about how they have MS but MS doe not have them I migh throw something at the screen. I am happy for them truly I am – that their version of this is going well for them. I also really tire of the total doom and gloom folks too.  It is not the end of the world – really it is not – just we got dealt a hand of cards with no rules.

And, please oh please, don’t suggest contacting the MS Society around these parts. They have nothing but offers of fund raisers you can go on -and raise funds. There exercise programs consist of telling you where you can go join/pay to swim – duh most cities have pools. Their calendar has skydiving listed – ok – well turns out you donate 500 bucks and you can go sky dive – emmm … that is it folks – a least as the lady on the phone at the local chapter explained it to me. Just in case I got it wrong I had someone else call and they got the same info – we have a bicycle ride – well ok but she can not ride  a bike anymore. Ok, the city has a pool you can pay to go swim there and there is a group of MS peeps that get together there so ask the pool peeps. Augh!! so much for trying the suggested help out there LOL.

I did meet some people that get together once a month socially. Seems they all had nothing but bad stuff to say about the MS Society in this area. Must be nice I looked up their budget for 2007 – must be nice to make that much in salaries . … and keep short office hours and make it like pulling teeth for someone to try and find something, anything . ..

Ok off that one.

The Cost of Being Sick

Average disease modifing drugs 1 month 1,200.00 – 1,500 co pay – $400.00

Provigil for fatigue  co pay = $280.00 20% cause no generic

No generics, no deals, no can do LOL I am having a hard enough time coming up with my co pay to visit the DR.

I guess you are suppose to be either super poor or super rich.

Stupid me for working all my life.

UPDATE: I did find a coupon for a free 7 day trial from the drug company for Provigil, so if it works I am good to go for 7 days.

Hunt Through the Maze

Another note in the hunt for info.

One would think that since there are National and local MS Society that I would be able to find all the spiffy support they advertise on their sites. Yes, they sent me a news letter and I signed up for a series of pdf deals for newly diagnosed folks. They were Ok, but really did not cover anything not readily available via google.

I went to a support group that was suppose to be awesome. I was thinking cool, I will hear others and how they deal with stuff maybe even getting some hints in dealing with symptoms or life in general. But, what I got was a first hour spent listening to a sales lady go over expensive toilet seats and showers (they even have remote contol toilet seats) and then they discussed how cute a couple was that attended the group that week.

I ran into someone I had known via my other halfs work over 15years ago. She said come back the regular gal who runs these meetings is great and this was not very good this month. So, I did go back only to listen to the cute couples caretaker half go on and on and on about politics. The facilitator just let em go on and on and on. The group was smaller than the month before. Then the facilitator read some info taken from the National MS site. I sure it was great info except to those of us that do not know all the acronyms and study codes. Then the cute couple dude started up again.  Turns out the gal who did this group retired last month. The lady running it now is it. The aquantance I have there said lets go and we left early.

My partner decided to call the MS society and see if we could find another group, or get me signed up for something like swimming or walking anything – their site says they have these programs. Well, not exactly you can see how full the calender is here. Here is a list of programs they “offer”. Thinking she missed something or that we just were searching wrong she called. Well, if you want to go do lets say swimming you can sign up at the local recreation center and there is a group of MS’rs that do stuff together. Great my other half pays for herself to use the pool it is not an MS society program it is a group of folks that pay to use the pool and hook up. She also was giving some contact numbers of people who have some sort of support group but no one ever called back ;( The lady at the MS Society did mention they do bicycle rides – yeah the fund raisers. One, they are over with here, two I used to ride in those things when I could ride prior to even knowing really what MS was – we all just rode and walked to be doing something “good”.

So, either we are totally missing the right code to get into the club or we are just lost in the maze -either way I guess the MS Society mostly used their funds to support research.

I guess we made a Wrong turn in the maze?

As for the recumbent bicycle it was a no go ;( . I ended up taking it down the the local bicycle shop I used to work at. The owner is gonna sale it for me. Better than it just going back to storage. It was my adventure of the week. I actually got the thing into the back of my truck, found my way downtown and back. It was fun seeing some old familiar faces there. The end result of the excursion was a fell asleep when I got home.

The cool factor is I woke this morning and could walk about without having to be a wall huger.  I guess I loosened up a muscle somewhere? Balance still crazy bad but better able to hold myself straight to walk. I so hope this is one of those woo hoo deals where it is going away.

Of to hunt about the maze some more.

Today So Far

Update: I got the recumbent, no comments on the whale horn it is gonna be so gone! and maybe tomorrow I will get it all clean and tuned up.

What I do not wish to become is the person who wallows in their disease nor to I wish to be one whom pretends everything is spiffy. I hope to achieve a balance here somewhere LOL.

Reality is I used to be able to haul ass on my mountain bike – really I did. Now I am working on not falling over ;). The duh factor is tough shalt not ride thy motorcycle, although waxing it these last four years has been a motivator. I have a spiffy recumbent E bike in storage. I thinking emm if I can get over the geek factor I might give it a go.

I saw the neurologist today and I get to go to physical theraphy and learn to walk better – in her words before I hurt myself. Well . … I have been stubborn thinking that walking about looking drunk is a good thing cause a least I am moving! I also got some drug to help hopefully with the fatgue. Coolness. I hope between the two I can get back out hiking and taking pics.

Well, off to storage for now.