Stuff

I was POSITIVE I posted last week, but I guess I didn't.

So, we're moving on Saturday and I'm excited as hell.

My computer is giving me fits of rage and it's everything I can muster some days not to walk it down and just toss it in the Detroit River.

A few days ago a misogynist with MRA leanings killed 6 people because women wouldn't fuck him, as was his right.

Sorry could anyone remind me of the last time a woman committed mass murder in the name of feminism?
— Lou (@Msloulou77) May 26, 2014

Tell me misogyny is no longer a problem. Tell women we have no reason to fear for our lives. I dare you. pic.twitter.com/aJ6DLPcq4U #YesAllWomen
— Becky (@Tikken) May 25, 2014

teach your kids that normal is a lie, but that human never is.
— jay, determinator (@jaythenerdkid) May 26, 2014

PSA for #YesAllMen: You are not entitled to any woman's attention, affection, body, sex, or relationship.
— bossy (@BhasChat) May 26, 2014

And that's all I have to say about that.

Shaken

I wrote last night,

"My "Urvertrauen" (basic trust) in the basic goodness of existence itself is shaken. I can't read the news any more. I really don't want to be part of the human race any more. There's nothing I can do to help and nothing is going to change.

I'm not suicidal, I just want to quit the world."

Thanks Jason.

Why do I feel this way?

This, this, this, and this. And those are only the beginning.

Been avoiding this post

Look at the date.

Now look at the name of this blog.

Now back to the date.

Now back to the title.

This is the date that your blog would be titled if you were me and you had been diagnosed with multiple sclerosis on 12 December 2008.


So, yeah. It's my MS-a-versary. Two years.

Not as angry as I was, but still very, very angry.

Still not okay. Still very depressed. Still very much aware that my life has been limited by my disease and my future.

I have two of the three "worst-case scenario" symptoms. If I end up with uncontrollable nerve pain, please someone kill me. I've lost my memory and *TMI WARNING* consistent control of my bladder (yeah, you needed to know that!) so all I need to be is constant pain to have no real reason to go on living.

I'm in the testing phase with a urologist and depending on the outcome of a bladder function test in January we'll know if it can be treated.

I spend a great deal of my day being ashamed and embarrassed. I've barely told Joe about this. Thankfully he's been busy, busy, busy with school for three months so barely talking to him or seeing him helps cut back in the potential for embarrassing moments with my malfunctioning organs.

Two years with this disease and I still feel like I've been robbed. I'm now fairly certain that isn't going to change. I still know that it could be worse. I'm acutely aware that it probably will get worse. And no, I'm not grateful that it's not worse now. The more I have now means I will have more to lose later. I am pretty sure I don't want to lose any more than I already have.

I would have killed myself 18 months ago if Joe hadn't told me he was sticking it out when I asked him if he wanted to leave. The promises and commitments I made to Joe when we decided to get married a little less than 6 years ago are the only thing that keeps me from killing myself now. My husband is the best husband in the history of all husbands and as such deserves a much better life. I'm doing everything in my power to make sure that happens for him.

At two and half years after my first symptoms, this is the best I can do. Under my old standards, it's not good enough or enough effort. I know this when I look around my house and take stock of my life, but then I remember that MS means I have to not set the bar so high.

That's what this second year with MS has been all about... lowering my expectations. I'm never going to finish what I start or keep up with my own standards.

Maybe if I just start accepting that I won't feel like a failure every single day of my life.

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.

One Week

I've done 8 shots now. It's still frustrating me to give myself shots that I have to look at, even with the auto-injector. I like the speed with which the auto-injector administers the Copaxone. I find that straight from the syringe is just too fast.

I'm pleased with my progress at getting this shot integrated into my life though.

One thing I am NOT thrilled about is the CCSVI advocates clogging up my comments, following me on Twitter and sending me messages on Facebook.

I'm really happy that all these willing victims are ready to martyr themselves because it's going to take at least 5,000 people running off and getting the "liberation procedure" before we find out what the stroke risk is. Since solving the problem of my wonky left leg and intention tremor IS NOT worth the risk of being left in a wheelchair, a vegetable or dead, I'll wait, thank you very much.

I'm not going to advocate that the test and the surgery start taking place here in Canada unless every single person who has it done kicks in 2/3 the cost and signs a waiver saying they can't sue for malpractice because the surgeon didn't know how to do the procedure and it was so experimental they didn't know the inherent risks.

A vascular surgeon that my neurologist at UBC Hospital talked to thinks that the risk of stroke could be as high as 1 in 100 to 1 in 5000 depending on where the narrowing/blockage is.

Neither of those numbers is worth the risk to me right now. I want to see more study, to start training for the professionals to diagnose CCSVI and the surgeons to treat it, and to find out if the risks outweigh the benefits.

In the meantime I'm doing Copaxone and doing my physiotherapy and yoga. I know for sure that those things won't kill me.

Questions

I posted this terrific post by Wheelchair Kamikaze regarding CCSVI to a couple of Facebook groups. This post is thorough and thoughtful and explains better than I could why I am cautiously optimistic about CCSVI and the "Liberation procedure" but not completely sold.

I was then attacked via Facebook messages by people who were completely happy to drink the Zamboni Flavor Aid and were *ANGRY* at me for not being as thrilled and ecstatic about the *cure* as they were.

Oh "ye of little faith"! I, like a lot of us with M.S., am very excited about this treatment if only for the spotlight that this discovery casts on this disease! Don't dash our hopes with your negativity!

That's the only one I didn't delete. The other ones were just fucking rude, like I was purposely trying to piss all over their day by pointing out the obvious unknowns about CCSVI!

I was told that I must be so incredibly disabled that I've just lost all hope and now I can't stand to see other people happy.

I was told that I just needed to get on the MS Recovery Diet and I'll never have an attack again.

I was told to "Think Positively", "Accept Jesus into (my) heart!" and "Count my Blessings! (I'm) not Dying!"

(All Y'all KNOW how much I love being "Brightsided". Fucking gives me the warm fuzzies ALL OVER.)

To recap, all I did was share a well thought out and researched post about CCSVI and then people felt it necessary to send me messages trying to make me feel bad for not believing what they believe.

WHY do people do that?

I disagree with a LOT of what people post to the internet (I have a Twitter account for crying out loud.) but I don't find it necessary to privately message them to tell them that they are wrong for what they think or believe about their own medical condition, even if they are wrong and I know that they will suffer for it. ;)

It's not like I'm some Glen Beck fan spouting crazy in public.




PS.

I'll be back tomorrow, it's a big day.

Defined.

Gratitude is defined as the state of gratefulness; thankful, appreciation

Fortunate is defined as bringing something good and unforeseen; auspicious, having unexpected good fortune, lucky.

I will never be grateful for having any part of MS, not even the part that shows me I'm not as bad off as someone else with the same disease.

I, however, feel extremely fortunate that I don't have the worst of what this disease can throw at a person.

Gratitude is for the works and acts of people, fortunate is for those things no one, including me, have any control over.

If you have a problem with that, that's your problem to deal with.

If I ask for advice on a particular subject I'll take what I get, but don't you ever tell me how I should feel about something just because you think I should be looking at the world a different way. I really don't care what you think of my life. I'm just here telling it as it is, not as you think it should be.

Also, jesusfreaks who keep sending me blog replies telling me to pray and give my life over to your personal lord and saviour: I will keep deleting your replies unread.

Atheist is not a joke and it's not meant as a personal challenge to your conversion skills. As I said right up there, I'm telling it as it is, not as you think it should be. Kindly, go sell your crazy somewhere else. We're all full up here.

I had something totally different I wanted to talk about, but the replies to my last post (of which only one was suitable for publishing) just made me so angry at humans (again) that I just had to say something (again) about the arrogant nature of humanity. We all think that our particular world view is best for everyone. Though, I'm pretty sure that I don't want to live in a world full of people who think like me. Maybe just 20%, so the species will be propagated, and someone else can do the science and math things required.

The Angry Woman's Guide to MS

Historiann has been writing/collecting a series of posts called Lessons for Girls. The first one, by Historiann herself, is about anger.

If I wish I had learned one lesson earlier in life, it’s this:  it’s okay to be angry, it’s okay to make other people angry, and anger can work for you.

I am angry. I am angry all of the time. And I'm really sick of people who think that angry is unnatural; that I should try to find the blessings in my life, that I should try to "get over it". People tell me they are concerned about how miserable I am, when it actually seems to mean that I am making life unpleasant for those around me.

If it weren't for my absolute rage, I'd still be in bed 10 to 15 hours a day, and I'd have lots of support for that inaction because no one wants to make me angry. I'm going to the psychiatrist because everyone thinks that not having a will to live and not having a meaning or reason for my life is a problem, even though I don't.

My anger will be medicated away to make other people comfortable.

Everything I wanted for my life is gone, yet everyone around me says that I should be grateful that I'm not dying. Or I should just "think positively" because things are going to be different in 6 months, or a year, or a decade.

My present anger isn't going to change the fact that things will be different at a later date. Please stop treating me like a child. If I had won the lottery on Wednesday, the first thing I would've done is found someone in Canada, the UK or the USA to give me a stem cell transplant to see if it would stop the MS. I don't care that it's dangerous or might have killed me. If I am not healthy and somewhat normal, I'm pretty sure that I don't want to live.

Everyone in my life seems to think that that attitude is crazy and that I'm depressed and borderline suicidal. I don't think that I am. I think that my reaction to the way MS has shown up in my life is perfectly rational, given the way I have always looked at life, living and death.

But I soldier on because I don't have any humane options for ending my life here in Canada. The options I have would also be very difficult on my family and I don't wish to burden them any more than I already have in my life.

So I'm not going to apologize for my anger. I am not going to back away from it, and when people start feeding me the bullshit that makes me the angriest, I will say so.

Forcefully.