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.