Not the country, my Copaxone support nurse.
She calls me every month to check in on my "success" with the daily regimen of my injectable disease modifying drug.
It feels a bit like a pep talk but I realize that Teva pays a lot of people a lot of money to keep me on this $1,400 a month drug. I've already decided that I'm sticking it out until my next relapse, whenever that happens. I'm generally stable, with small things improving because of "Magic Hands" Ray and the physiotherapy exercises I manage to throw into each day and maybe the Copaxone.
Are the improvements because of the Copaxone? I don't really care. I'm not in a wheelchair, I've got 20/20 vision, I can generally control all of my limbs and I only need 7 hours of sleep.
When you've got MS, that's about as good as it gets. I have distinctly lowered the expectations for the remainder of my life.
It's going to be *AWESOME* living like this when I know that almost every woman I'm descended from lived to be 80+ with most of them getting beyond 85. I've probably got 50 more years of this shit to deal with.
I have my three months on Copaxone follow up with my neuro on 5 August, right after an appointment with my physiotherapist to figure out why yoga and pilates movements involving the movement of my head make me so dizzy I feel like puking.
This whole getting exercise thing is going really fucking badly.
I've been just obsessing on cigarettes and lattes for about 24 hours now, knowing that in my old life that would solve this weight problem by the first of October, but I'm pretty sure it would kill me now.
Age and MS have completely changed my problem solving skills, much to my near-instant-gratification-loving-brain's chagrin.
Oh, to be 30 again. It seems like a lifetime ago.
Wednesday, July 28, 2010
Wednesday, July 21, 2010
Fuck this
Having MS is needlessly complicating my life.
I have MS and access to a host of specialists in non-neurology disciplines through the MS clinic. The problem is that there are only one or two of them and they don't work at the clinic full time.
I've been having anxiety morning, noon and night for about a month now so I am pretty sure that it isn't going to go away by just thinking calming thoughts. Knowing that the psychiatrist at the MS clinic isn't available more than one day a week, I called my family doctor.
She won't deal with me because the anxiety is probably MS related, and tells me to get in touch with the psychologist she referred me a year ago. I call that psychologist and she tells me that the anxiety is either related to MS or to the anti-depressant the psychiatrist at the MS clinic put me on, so she won't touch me because she doesn't treat people with MS because she knows nothing about it. (I was referred to her because of stress and anxiety, interestingly enough.)
All I want is some fucking Xanax and to get on with my life. There is no fixing me. I am broken. This is not going to get better through therapy or exercise or whatever. Just give me the fucking drugs so I don't care any more and let me plod along.
It's funny, since I gave up all hope of ever doing better or achieving anything with the rest of my life, my job bothers me way less than it used to but the general anxiety and the dreams about being trapped on the stairs at my parents house whilst black balaclava wearing strangers shine flashlights and take photos through the window got worse.
So I'm on the cancellation list for the psychiatrist at the MS clinic and have an appointment set for September 20 at 2 PM.
I could fucking kill myself by then, but hey, at least I won't see someone who doesn't treat people with MS.
I have MS and access to a host of specialists in non-neurology disciplines through the MS clinic. The problem is that there are only one or two of them and they don't work at the clinic full time.
I've been having anxiety morning, noon and night for about a month now so I am pretty sure that it isn't going to go away by just thinking calming thoughts. Knowing that the psychiatrist at the MS clinic isn't available more than one day a week, I called my family doctor.
She won't deal with me because the anxiety is probably MS related, and tells me to get in touch with the psychologist she referred me a year ago. I call that psychologist and she tells me that the anxiety is either related to MS or to the anti-depressant the psychiatrist at the MS clinic put me on, so she won't touch me because she doesn't treat people with MS because she knows nothing about it. (I was referred to her because of stress and anxiety, interestingly enough.)
All I want is some fucking Xanax and to get on with my life. There is no fixing me. I am broken. This is not going to get better through therapy or exercise or whatever. Just give me the fucking drugs so I don't care any more and let me plod along.
It's funny, since I gave up all hope of ever doing better or achieving anything with the rest of my life, my job bothers me way less than it used to but the general anxiety and the dreams about being trapped on the stairs at my parents house whilst black balaclava wearing strangers shine flashlights and take photos through the window got worse.
So I'm on the cancellation list for the psychiatrist at the MS clinic and have an appointment set for September 20 at 2 PM.
I could fucking kill myself by then, but hey, at least I won't see someone who doesn't treat people with MS.
Monday, July 19, 2010
Fail
I hopped on the scale this morning and 15 minutes later walked to the bus stop completely devastated.
I am now 11 stone 13 lbs. or 74.75 kg (Yes, I know only that isn't in pounds, a weight we'll all understand. It's just that old school Imperial measurements and metric make it sound better than it actually is.)
Now I know that I am supposed to have high self esteem and it's not feminist-ly correct to judge about body size and type, but you know what - I do not give a fuck about that right now. My body and I are at war and it is not to be trusted under any fucking circumstances until appearance and action improves.
You see today I crossed a threshold that I swore to myself I never would. I now weigh 167 lbs. This is the most I have ever weighed in my entire life. I have never been this fat in the entire history of my 36 years on earth.
In my previous lives, every time I would put on winter weight I had one of two responses.
1. Cigarettes, diet shakes, full fat lattes and more cigarettes.
2. Join a gym, lift weights and do cardio until my lungs could take no more, cigarettes and eating whatever the hell I wanted in reasonable portions.
In two months I would be back down to my 130 to 135 monthly fluctuation and everything would be fine until the next winter.
When I moved out to BC I didn't put on winter weight anymore and since I walked pretty much everywhere the SkyTrain couldn't take me I didn't get fat until I started getting sick with MS.
Now its completely out of control and after a talk with my physiotherapist I have been given two choices for exercise - yoga or pilates.
I am leaning toward pilates at this moment because the pelvic floor exercises might help with the most unpleasant of my MS symptoms, but yoga is much easier to come by if I can find a school/instructor who will let me do it with my shoes on.
I don't know what the point of this post is other than to say, "I really hate myself for letting myself go".
And with that I'm going to walk around the block and then ride my stationary bike, because I am freaked right the fuck out.
I am now 11 stone 13 lbs. or 74.75 kg (Yes, I know only that isn't in pounds, a weight we'll all understand. It's just that old school Imperial measurements and metric make it sound better than it actually is.)
Now I know that I am supposed to have high self esteem and it's not feminist-ly correct to judge about body size and type, but you know what - I do not give a fuck about that right now. My body and I are at war and it is not to be trusted under any fucking circumstances until appearance and action improves.
You see today I crossed a threshold that I swore to myself I never would. I now weigh 167 lbs. This is the most I have ever weighed in my entire life. I have never been this fat in the entire history of my 36 years on earth.
In my previous lives, every time I would put on winter weight I had one of two responses.
1. Cigarettes, diet shakes, full fat lattes and more cigarettes.
2. Join a gym, lift weights and do cardio until my lungs could take no more, cigarettes and eating whatever the hell I wanted in reasonable portions.
In two months I would be back down to my 130 to 135 monthly fluctuation and everything would be fine until the next winter.
When I moved out to BC I didn't put on winter weight anymore and since I walked pretty much everywhere the SkyTrain couldn't take me I didn't get fat until I started getting sick with MS.
Now its completely out of control and after a talk with my physiotherapist I have been given two choices for exercise - yoga or pilates.
I am leaning toward pilates at this moment because the pelvic floor exercises might help with the most unpleasant of my MS symptoms, but yoga is much easier to come by if I can find a school/instructor who will let me do it with my shoes on.
I don't know what the point of this post is other than to say, "I really hate myself for letting myself go".
And with that I'm going to walk around the block and then ride my stationary bike, because I am freaked right the fuck out.
Tuesday, July 6, 2010
36
In one week I will be 36. Barring some sort of disaster, I will have exactly doubled the life span I had planned on when I was 17.
I can't really explain to anyone the screaming that is going on in my head. I want to speak, to tell, but I can't because it's a secret/it's private/it will hurt someone/it will hurt me.
Every time I open up this "new post" window I hear a voice in my head say "You'll never get a job, ever, if you keep this blog."
What the hell makes that voice think that I'm ever going to apply for a job that will require a google search, I have no idea. I'm damaged goods and as such I've given up on having much of an interesting future.
The heat of the day didn't do as much damage as I thought it might, but I did get some weak limbs that were harder than normal to control and a little bit of cog fog. Nothing too tragic though.
I'm not looking forward to the next few days of over 25 degree weather. I can deal with it, but my skin just hates the feel of breezes on it so I have to wear long sleeves all the time. Sometimes I can get away with a 3/4 sleeve if it's not too windy.
Amy tagged me on a note called 25 random things. I am tempted to follow up on that, but right now my braynz are just too raw to fill it out with anything more than all the screaming.
Posting screaming in public will alienate me further from the human race. I'm trying to be better at relationships.
I can't really explain to anyone the screaming that is going on in my head. I want to speak, to tell, but I can't because it's a secret/it's private/it will hurt someone/it will hurt me.
Every time I open up this "new post" window I hear a voice in my head say "You'll never get a job, ever, if you keep this blog."
What the hell makes that voice think that I'm ever going to apply for a job that will require a google search, I have no idea. I'm damaged goods and as such I've given up on having much of an interesting future.
The heat of the day didn't do as much damage as I thought it might, but I did get some weak limbs that were harder than normal to control and a little bit of cog fog. Nothing too tragic though.
I'm not looking forward to the next few days of over 25 degree weather. I can deal with it, but my skin just hates the feel of breezes on it so I have to wear long sleeves all the time. Sometimes I can get away with a 3/4 sleeve if it's not too windy.
Amy tagged me on a note called 25 random things. I am tempted to follow up on that, but right now my braynz are just too raw to fill it out with anything more than all the screaming.
Posting screaming in public will alienate me further from the human race. I'm trying to be better at relationships.
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