multiple sclerosis

multiple sclerosis

Dunno Dance

Annie

I am doing what I now call my acceptance of denial dance. I have never had the required rhythm to dance great and it seems that life right now fits right into that analogy –I got no rhythm going here.

Now if someone told me I had A disease and if I did B I would get C then ok. But come on, after net searching, forum pursuing, blog reading, and asking questions of the docs, here is what I have come up with about MS:

Dunno what causes it
Dunno what cures it
Dunno what is going to happen
Dunno ________ fill in the blank.

Well how about I dunno if I really want to claim this multiple sclerosis diagnosis. I mean what the heck. I am not in the frame of mind or understanding to use the, and this is important to me, disease modifying drugs they have available – why chance feeling like doo doo or damaging my organs – when only potential to slow the inevitable down exists?

So, I should call the MS society here right? Maybe they have some better info or help or support you know? Well, what I got was an offer to bicycle in the next fund raiser. If I want to call ahead I can go to the newly diagnosed meeting – next January. The support group deal has not worked well for me. The first group spent most of their time arguing politics and since has been cancelled. The second group – I guess I was not up on the proper etiquette – silly me I answered a question truthfully.  I must have gotten the wrong dance card.

Planning for the future is depressing. We own a two story townhouse, the neighborhood has now turned ghetto (impossible to sell in this market) anyways. No way to afford a new home. Working on the debts that two full time salaries used to pay and since I can’t work we are down to one plus a small amount from SSDI. So, in about six years LOL we will be out of debt if and only if we have no more major expenses. It scares the heck out of me that I won’t make it up the stairs someday since the only bathtub/shower is up there. And yes, you can scoot up to the landing and then up the next set of stairs on your ass – been there done that dance before (not due to MS).

My friends and partner are very supportive and my dogs still think I am head wolf so life is good. These people have known me for years – some most of my life. So at least they know that I don’t not do something because I am lazy etc.

My friends and I started a photography group. He has since left state so I was doing it but it is too much for me right now (we have 292 members) so my other friend is doing all the work. I miss being able to know that if I say I will be somewhere and do something that I will be able to be there. I hate that my eyes mess up my ability to see through my camera lens well.

So for right now I am trying to eat better, exercise when I can, read a lot, and see what happens when I wake up tomorrow.

If I just ignore this dance I suspect the result will be the same But then again who knows?

Members of my pack:

Annie and Mr.Catfish

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.