Dating and the Sow

It's a challenge, this whole dating world and the Mad Sow. It isn't easy to not bring it up. I'm rather young to be retired, I obviously don't go to work, and I look relatively fine.  Questions arise. I've taken to telling people I'm a writer but I need some more publications if I am to sound persuasive about it all. Maybe I can just say I have an inheritance that doles me out a dribble of money each month?

But the question is always there - how bad is your illness?  How bad is it going to get? If I fall in love with you, will I be saddled with a cripple? Harsh, but reality is many women with MS are left by their partners. And vice versa, though less frequently. Chronic disease is no picnic to think about. And though I deal mainly with crushing fatigue and numbness now, who knows what tomorrow may bring? I don't. My neurologist says my disease looks relatively quiet. That's nice and I'm grateful. The fact that I was diagnosed older than is common could be good or bad, depending on which study you read. I take my meds, I try to eat properly, I exercise madly when I can. I'm doing everything I can to keep well, but my brain might have different ideas.

But, let's be honest here.  I'm over fifty.  Almost everyone in my age group has at least one chronic disease. Many of them don't know they even have it. Many of them will die well before me of high blood pressure or stroke or diabetes or cancer. It's the idea of having MS that scares people - the image of wheelchairs and walkers and trembling limbs and spasms. Heck, that scares me, too.

The other diseases aren't as visibly disabling in people's minds. But as a nurse, I can see them.  I can see the smoker, coughing, and visualize their lungs, see the COPD waiting ahead.  I see people who don't exercise or who are scarfing down mallomars, and I know what they'll likely be told soon.

So I get slightly crusty when I'm quizzed about my MS. I'm good now, I tell people. I have no idea how I'm going to be tomorrow.  And neither do you know how you will be. Let's just pretend we are all healthy and live the life we have, right now.

Saving all your foodstamps and burning down the trailer park

http://www.youtube.com/watch?v=s8zn63ADiIE


Soy un perdedor
I'm a loser baby, so why don't you kill me?






Sometimes, with this little MS thing, you feel both like a loser, and angry enough to burn down trailer parks. 
I can't even begin to tell you how TIRED I am of being told I look fine, when I've managed to drag some sensible self out of me for an hour or so in a day.
I feel frustrated that I have to explain and explain and explain, even to those who know me.
I'm tired of trying to learn the lingo for being taken seriously by doctors and neurologists.  
I'm fed up with dealing with the probable side effects of medications that may not really be helping me after all, and if they are, well, it's not by much.


I imagine everyone with a chronic disease, especially if they are outwardly semi-vertical and smile, deals with this anger and frustration at not being heard. On the one hand, we're PISSED that we were given this wee challenge to mess up our lives - on the other hand we are FROTHING at the mouth about trying to explain it yet again to someone. Or excuse ourselves, or explain why we can't do something or whatever. Grrr.
Just saying....
Seriously, I don't feel like a loser, nor do I want anyone to kill me.  But there's something in that song that calls to me. Perhaps that's because when I talk to health care professionals, I feel like I should be singing it to them...
Whaddya think they'd say?

medication mambo

One of the biggest thrills of being a "chronic disease" person is that people come at you with drugs for every little thing. Some people choose to take them. As for me, I'm a bit scared of the interactions, the risk of iatrogenic disease.But sometimes one needs the medications.

I know I need the Copaxone, or some disease modifying medication. Why? It apparently reduces flare-ups and damage from the disease. Apparently, and only by 30%- so it's not overly convincing...and the daily shots are toxic enough to my tissues that I have bruises and lumps under the skin for weeks afterwards. Of course, I could get a different drug, with its own set of problems.

And then there's the antidepressant that made me more depressed. Taking it made me suicidal, but no one thought of taking me off it - just told me to take more. Which has resulted in an increase in my blood pressure, now requiring more medication....

So, after consulting with the docs, I am now off the antidepressant. It's lovely, though I am perhaps less so. I've developed a tendency to swear more frequently, and am somewhat more easily angered. But why not? Some things are angrifying! And I like being able to feel emotions. It's novel.

Of course, the antidepressant was Effexor XR, one of the very very worst to withdraw from. My doc tells me to expect at least 2 weeks of hell. Many people can't take it and end up going back on the medication to deal with the side effects. I'm not enjoying the dizziness, the fevers at night, the feeling that my head is going to pop off, the muscle spasms, the general feeling of unreality. On the good side, because I have to deal with so much of that already with MS, it doesn't seem too unusual...and every day I have a little clearer morning, a little more of me rallying around.

In any case, I feel like the queen of drug induced illnesses, always wondering how much of the crappy I feel is due to the medications people give me. Is it all worth it?

And even more puzzling, have any of these drugs been adequately tested in women? Or are they all tested in healthy male subjects, just cos it's easier not having to deal with all those hormones?

Now that's something worth getting angry about!