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Carbonated or tingling

This morning, I experienced something new to me: my right hand felt as though it was carbonated. It was tingling.

As I'd just woken up, Per said that maybe my hand was still asleep and not ready to wake up yet. This was my response:

:-P

It makes me wonder whether other folks who have to deal with MS have felt this sort of thing, as well.

I vaguely remember -- as my memory doesn't seem to work well these days -- someone else mentioning the tingling feeling.

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I'm grateful to clms1 for telling me that Mitt Romney's wife Ann has MS. Here in Britain, we get a lot of news coverage about American politics but I don't always follow it since I have no vote there. Anyway goofle has just led me to this. Some of that site's links may be interesting.
It's been announced that Jack Osbourne has multiple sclerosis. Oh no, I'm so upset for him.

The article I've linked to here doesn't say which kind of MS Jack has. If he decides to 'raise awareness' I hope he'll try to tell the media that there are 4 main MS diagnoses and they aren't all the same. Right now he's quoted as saying 'I've got MS but I'm determined to overcome it' and I'm thinking, yes, I remember that. It's what I said when first diagnosed. I did make some good decisions (went on a health kick and got my weight down; went back to University and got a PhD) but a lot of what I've done since then has been about learning a little humility. This disease is not for overcoming.

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cross posted from my journal

I got married this year so now I have insurance (yay). This meant the UCLA clinic I was going to couldn't see me anymore (boo because I like UCLA, but YAY because that UCLA clinic is soooo full wait times are like 3 hours on a GOOD day - not even exaggerating a little). So, cross posting my post about my first appointment with the new neuro here, in case you all have info I can use :)

Okie dokie so new neuro appointment went well.

Migraine front = he said stay the course with the Topomax course try to limit how many I get plan as that seems to work best for me.

MS front = after looking over the UCLA paperwork he agreed that MS is the best diagnosis (as opposed to NeuroSarc). So now then since I have been better OFF of the shots and had either worse MRIS on them or just was flat out sick on them here's where we are -
1. He's having me take a blood test to see if I am danger if we go with Tysabri. For my non MS'y friends you can read all about Tysabri on Wikipedia here. Of if you're lazy the short version is it is an IV, for those it works on, they consider it a miracle, of course worse case scenario has been death. Hence this new blood test.
2. There are now pills for MS. One is out now. He won't prescribe it because it is too risky. Once comes out next year and he would prescribe it because so far the risks with it seem low.

Since I am at the best I have been in awhile minus getting sore and tired easily if I push myself too much, he feels now is a good time to take the time to decide which course I'd like to go. He's also ordering a 3D MRI which he has warned me WILL BE WORSE than my last MRIS because it will be so much more detailed that those, but will give us a really good baseline to work with from now on.

To my MS'y friends on Tysabri - would you recommend it? If you had the choice would you wait for the pill coming out next year? Thoughts? Taking all of the input I can get in deciding.

How did you realise ... ?

Today was the day for my latest Tysabri infusion, to which Per (thankfully!) drove me to and picked me up later from.

While I was there, I realised that I was one of only two -- *two* !!! -- people with some sort of walking aid. Everyone else -- that is, five or six other people -- just showed up, walked in, sat down and got their meds, whatever they were. And that made me wonder -- undoubtedly, not for the first time, but perhaps the first time I remembered to write about it, or maybe the first time that ... oh, never mind -- how else have others here with MS discovered that they had it? And what sort of progression did it take afterwards?

Per and I were talking about what I commented on, and he said that I seemed to have been hit really hard by this disease.  Certainly, I do feel as though I've been struck with a bag full of baseball/cricket bats, but I can still wonder how others knew something was wrong and so forth and such... ???

This entry was originally posted at http://misschili.dreamwidth.org/63942.html. You can comment here or there, as you wish.

Falling ...

(Didn't want anyone thinking that I was in any way referring to the season, which we're (luckily!!!) not in any longer, this time around...)

Tuesday, I fell. Outside. With help. Ow.

It was an hour or so away from my physical therapy appointment. Despite not having gone since, um, December ... after falling that time inside on their throw rug in front of the coat closet ... I sucked it up and decided that I was going to brave that evil throw rug, that it wasn't going to let me down again, ha HA!

So, I got dressed, covering up anything that might need to be covered in this Denmark cold. Brrrr... Did I say, 'Brrrr' already? It bears repeating, as it's f*€&ing cold here.

Once downstairs and out at the street -- which took some time, having to walk from our apartment building past a few more to get to the street -- I rang for a taxi. It didn't take long until one showed up, and the driver jumped out to assess -- maybe that needs a few more 'ass'es in it, and you'll see why -- the situation.

When he arrived, I'd been sitting on the seat of my wheeled walker thing, brakes on and all. I stood up and arranged myself, made sure my hat was on, double-checked that my mittens were still in the pouch attached to my wheelie thingie, and took off the brakes of the wheelie (well, if I have to call it anything, I suppose this will do ... just as long as I don't name it, as then you know that I'm toddling down the road to Crazy Town)  so that I could cross over to the taxi, which was parked maybe three metres away.

The driver came over to help me, or at least I thought he did, and maybe he thought he did, too. He put his hands on my wheelie and started pulling and pushing it, faster than my feet could keep up. I wrestled it from his grip once, gathered myself and forged on ... only to have him put his hands on it again, to push it faster than I could keep up with. Almost to the edge of the first sidewalk, I figured that I had to keep on with it.

Between the first and the second sidewalks, there's gravel and dirt and such. I was trying to walk over it, and the driver was pulling me onwards, when ... I don't know exactly what happened, but I tripped or something, and I grabbed furiously for something to keep me upright, but ... it wasn't there, and I fell, partly on the wheelie, partly on the gravel.

There I was, the wheelie partly overturned and partly beneath me, and the taxi driver holding onto it still, saying something about how I needed to stand up straight. Fuck, if I could stand up straight to begin with, I wouldn't have to use this thing to help me walk!

I remember trying to stand, but something happened, I don't know what, but I went ass over teakettle to the ground, hitting my head and shoulder and hip and ...

( ( ( had to stop writing for a while now, just to catch my breath and not cry and such ) ) )

The driver asked me whether I needed an ambulance and, when I shook my head (mistake, as that only made me dizzier) and said that I didn't, asked me whether I was going to keep on going.

This was one of those times I count as lucky and fortunate that the company that Per works for is on the same street as we live, as a man came over to where I was sitting on the ground and said that he'd seen everything and wanted to know whether I needed help. Luckily, he was heading to the very company where Per works (and which used to employ me before all this MS shit kicked me in the head!), so I gave him Per's name.

The taxi driver left before Per could get there, possibly as he was afraid of getting his arse kicked. Yes, he left me sitting on the ground, which I considered to be a well sight safer than anywhere else at the moment.

In the end, Per walked me home, gave me pills to ward off the pain that I knew was coming, made sure I had plenty of whatever I needed, kissed me and rubbed his cheek to mine, and headed back to work.

It's been a long while since I fell outside, but now, I guess, it's a much shorter while. Here's hoping that the whiles get longer and longer between...

*whimper*


N.B. In the midst of all this MS stuff, I'm also having hot flashes. Thence, the fact that, despite the brrrr factor of the weather here in Denmark, my mittens were off.

This entry was originally posted at http://misschili.dreamwidth.org/54898.html. Please comment there using OpenID.

?? for people w/m.s. or any thing close

I have a question that is bothering me cause I have m.s. fibro,I am type 2 diabetes (under control no meds ) hyperglycemia (under control watch diet ) sever anemia for over a year of weekly blood transfusions b4 needing a emergency surgery to remove my uterus which had fibroid that was about 2 burst & beginning of pre cancer cells, (under control now ) and tons of more which I wont get into as it is way 2 much. Bottom line I should be getting better & was but the last few weeks 2 or so my legs have been stiff/rigid (esp my left ) when I try 2 bend and with out warning I almost /some times fall then my left knee started locking up on me when I would try 2 turn around in a circle ,walk fast or cross a street and the last week I have haad whad was in the past mild attacks "the drunken shakes " where my hands and legs shake so bad I cant stand steady ,write ,do fine moter skill tasks and with my legs they feel like they will give out but they are just shaking like I am a junkie only thing is that it comes and goes with no pattern this time around .I don't know what It could be checked diet meds sugar fluids weight sleep every thing ,Nothing new ,nothing changed no idea what is bring it on as I thought it was going 2 be a "attack " but it stops and then starts again .Can't go 2 my doc w/ such vague signs and if I have no clue you know they wont .HELP any ideas thoughts things I should look at ?

Sh*t happens

What is the best way to develop a positive attitude?

Is this question ablist? Well not necessarily but it reminds me of a friend of a friend who, soon after testing positive for HIV, resolved, 'To be positive about being positive.'

I'm HIV negative sfaik but I've had a positive diagnosis of multiple sclerosis. 10 years later I still have MS and it still stinks. I wouldn't wish it on the most evil person who ever lived. So no, I don't have a positive attitude about this particular thing. Nor do I want to. Of course I have sadness, anger, fear and frustration about my disability. Anybody who tells me to 'let go of' those emotions is talking tosh. Anybody who says that I should appreciate the 'perks' of MS is talking tosh too. No, I'm not glad to lie on the sofa watching telly when other people are at work. I say, 'Be careful what you wish for.'

I was a happy person before I had this disability and I'm still a happy person because the disability isn't relevant to what I see when I turn out the light. What I see then is myself and I'm all right.

MS in your dreams?!

The other night, I woke up startled, as I was dreaming that I had MS and had trouble walking and ... ugh!

Okay, this was certainly some kind of sick nightmare, but like a nightstallion, it just kept romping and stomping through my night, until I woke up.

This is not the usual sort of thing going through my head when I'm asleep. Usually, I can do anything I might want to do when awake (but can't), go anywhere I might want to go (when awake or asleep, although the sleep-related places are usually a lot more interesting than the real ones!)...

Anyone else?

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