Sunday, June 28, 2009

Crosses fingers

Let's just hope that the $$$ I just paid for Remember the Milk's Blackberry sync is worth the cost. Maybe buzzing and laser shooting sounds will break me away from the habit of just sitting.

Saturday, June 27, 2009

It lives.

I've been better for a few days, but I've come to this empty text box so many times and nothing comes out.

I've been on Wellbutrin for three weeks now and other than a little more energy, I still hate my life and wish for it to be over. This is what they call "situational depression". The facts of my life suck, therefore I am depressed. There ain't a legal drug on the planet that's going to change that reality.

I go in for my fourth mitoxantrone treatment on Tuesday. My immune system will be on the upswing when my birthday happens.

On Friday I go to an agency that specializes in helping the disabled find work. I'm pretty sure that I am going to have another frustrating time trying to explain to someone that this is permanent, but the issues change minute to minute, hour to hour, day to day, etc. etc. The last person I was trying to deal with acted like I was making it up and couldn't seem to understand MS is chronic, probably progressive, there is no cure and I'm not mentally retarded as a result.

I am going to go back to bed I think.

Tuesday, June 16, 2009

Following up.

I met with my neurologist yesterday.

I have measurable improvement, I'm to stay on the anti-depressants & I can book my next mito treatment.

He thinks that we might be in a position to hold back the sixth treatment as an insurance policy if I get sick again. We'll look at me again in November. He seem disinterested in how I was feeling but very interested in the spasticity in my left leg.

I just lost feeling in my right thumb and then it came back after a few seconds. It's when stuff like that happens that I realize that I can never have a normal life, because there's constant reminders of my condition. My body won't let me forget I have MS.

Chang gave Joe and me the plague and it's not cool. I've got to be over this shit before I can get my next round of treatment!

Codeine cough syrup FTW!

Sunday, June 14, 2009

Summer time... and the living is easy? Really?

It took me three days to recover from getting my back overheated on Thursday. I used cold ice packs, I rested, I even resorted to some NSAIDs just in case I was beginning an inflammatory response.

This shit is difficult for me to tolerate. I don't like being outside at the best of times so having MS has really contributed to turning my dislike of outside into something close to agoraphobia.

I see my neurologist on Monday morning. Then I should get my date for my next mito. Me thinks that it can't come a moment too soon. I've been feeling like crap for 2.5 days and a bag of steroids just might be what the Dr. ordered. I am going to ask my doctor if maintenance doses of solumedrol are possible.

I've been on the max dose of Wellbutrin for a week, and it doesn't feel like any thing's different at all. I've had no side effects, my world is sucking far more than it sucked a week ago, and I'm not sure how anti-depressants fix a situational depression. I'm going to ask about that too.

If I had a gun, I'd put a bullet in my brain.

I guess it's an even better thing that I live in Canada. I don't have the dexterity and reaction time or the money to afford to take the FAC course, and I wouldn't pass the psychiatric test to get a rifle or a handgun.

I never get to do anything.

Friday, June 12, 2009

6 months.

Six months ago today my life was ruined for always and forever.

I'm sicker than I was then, but better than I was just two weeks later.

Everyday I hate my life, and let me tell you, the people who are paid to help me get on with my life certainly aren't helping.

I see my neurologist on Monday. More bad news? Probably.

10 days-ish on Wellbutrin and I have more energy but still want to die. July will bring another round of mitoxantrone.

If you are my friend and you are in Vancouver, missing my birthday party on July 11 without good excuse (working, out of town, death in family, your own death) will lead to a pox being cursed upon your house.

Wednesday, June 10, 2009

Two steps forward...

348,290 steps back.

I have a job interview of sorts tomorrow, and I'm pretty sure I don't have what it takes anymore to "wow" someone at an interview. My confidence is barely registering, and it seems like every step I take to try to move forward gets me kicked in the face.

I have a difficult time explaining myself, my cognitive abilities are shot, my physical abilities are intermittent and I think I just really hurt myself doing a yoga pose I could do yesterday.

I had a very frank discussion with the social worker at the MS clinic yesterday, and I think that she's getting a better idea of what to do and say around me. But she keeps repeating statements such as "you are going to have to find new meaning in your life" and "you're going to have to reexamine what's important in your life" every time I see her.

The thing is - I didn't have a whole lot of meaning or important things in my life before MS, and I'm finding less reason to bother finding them with each passing day with MS. The things that I used to have so much interest in before make me physically sick now, and the thing that I thought would be calming and wonderful is causing me injury and making me feel like an incompetent.

I need instruction on how to do this yoga shit, and according to this book I need a whole bunch of supplies that I don't have in order to adapt the exercises to what I can do. I'm also having a difficult time trying to figure out how the movements work from photographs in a book. It's endlessly frustrating, because I end up just re-doing the five things I can remember Richard teaching me over and over again, because I know I can do them. I don't have any money for lessons or supplies, so I guess I'm just going to add this to "my new normal".

The decrease in my income is really, really starting to show. I need to get back to work ASAP or things are going to get awful messy very, very quickly. I truly hate my life most days, and I don't think that people understand because I don't "look sick". The Wellbutrin has given me more energy, but it certainly hasn't removed my daily desire to slash my fucking wrists.

I am sick of being life's little prison bitch. If it's going to sodomize me on a regular basis, it should at least have the courtesy to use lube.

Tuesday, June 9, 2009

One Week

I've been on Wellbutrin for a week. Joe says I'm already better, but he doesn't live inside my head.

Since 7 days went so well, I'm now on two pills a day. I take one at 9 AM and one at 2 PM. I have a reminder set up on my CrackBerry to make sure I make that 2 PM pill. I've also put 7 pills in the sample container the psychiatrist gave me whilst my Free Drugs for Nuts plan kicked in. These are for my purse, just in case I'm not home at 2 PM.

I have a coffee meeting on Thursday morning with someone who wants to talk possible job with her company. I don't have any details, but it could be interesting. Or it could be a total waste of time. I won't know until sometime after 10:30 AM on Thursday.

I had a lovely time in the park, except for the aphids. *shudder* Bugs and dirt are why I don't like it outside much or often.

Wednesday I have appointments with both my neurologist and my family doctor. That will be an interesting day. I'll also know then when my next mitoxantrone treatment will be. I'm not sure if I should try to have it two weeks before my birthday or wait until the week after my birthday. It's a bid decision, because I'm turning 35 and there may be a meltdown.

And a party. I'm having a fucking party and everyone I know in Vancouver had better show the fuck up for it.

Have a nice evening.

Sunday, June 7, 2009

I'm still angry...

... but Joe remarked that I appear to be in a much better mood after 6 days on Wellbutrin. I don't know if that's true or if it's just helping me lie to myself better.

Joe had a friend of his up from Seattle who brought a friend of his from Portland to Vancouver. We went down The Drive for sushi, then to a pub close by for a drink and I didn't use my cane once, for any part of the trip. That feels like something close to progress, but I woke up yesterday thinking "I don't want to be disabled today." So I pushed it, and it didn't bite me on the ass. They went clubbing last night and rolled in just before 4 AM. I felt like I could've gone out with them, but I wasn't willing to push it that far. I didn't get back to sleep until close to 5 AM. I woke up for medication time at 9 AM and then went back to bed until 11:30 AM.

Tomorrow brings the lovely and talented Rina over to my house or out to the park for a "picnic" of wine, meat, cheese and olives in the park or my living room, as determined by the weather.

Maybe it's not just the anti-depressants, but also my ability to digest more booze than I had been able to earlier this year that's also helping lift my mood?

Thursday, June 4, 2009

Day 3 of my captivity.

This shit blows. I've gained four levels in Mafia Wars though, so it's hasn't been a complete waste of time.

When I couldn't make it to the interview this week, that part-time job I mentioned went away. Bye Bye job!

I should've taken the polish off my toes before I painted my fingernails. Now I have to find gloves or redo my fingers.

The weather is forcasted to be cooler tomorrow, and with things progressively getting back to normal by Tuesday. Please bring the rain!

According to my stomach, a Klondike bar and a Dr. Pepper weren't a suitable lunch. According to my brain, it's indifferent toward food.

It's official. I'm in menopause, but it's likely to be temporary. It's funny, before I got MS "temporary" meant "4-6 weeks, maybe 8" but now it means "maybe we'll know more in 6 months, maybe a year, or even as much as two years".

It's also official. I am depressed and there's nothing I can do about it but take happy pills. Day 3 of Wellbutrin brings no relief to my depression and not a single side effect. I might as well be taking a placebo.

I got into a provincial drug coverage program for crazy people who can't afford their meds. I pay $0 for all my crazy drugs. YAY! Maybe next time they'll cover the 'Pams.

My return visit to the psychiatrist is July 13.

There's nothing quite like going to the psychiatrist to have your depression checked out on your 35 birthday after your life has been so incredibly disappointing thus far.

Here's to hoping I can leave the house tomorrow because Chang in going to be here.

Tuesday, June 2, 2009

I can't leave the house.

I can go outside when it's 26C (79F) and 64% humidity. I can't go outside when it's 28C (82F) and 51% humidity.

Two degrees is what separates me from having a life. There's nothing I can do, save for buying a cooling suit.

I don't know how to do this. I don't know how to just suck it up or live with it. I don't know how to just be grateful for what I can do when it feels like I can't do anything or my accomplishments are measured at the same level as a preschooler.

I wrote a lot more in this post, but I deleted 80% of it because it's just too personal. I don't trust all of you who don't have MS to not try and fix me with suggestions of what you would do since you can empathize with my state based on that one time you were sick for a really long time. I also don't trust all of you who have MS not give me a pep talk and tell me how a lesser version of the life you wanted is good enough for you because it means you're still alive and your life has some worth and meaning, no matter how stunted or compromised that life is.

Yes, that sounds as bitchy as it was meant to.

Monday, June 1, 2009

Monday, Monday

Today I have an appointment with the neuro-psychiatrist at the MS clinic. I've been Googling for drugs that will make me not care that my life sucks. The drug information on the internet doesn't really have an overview in that area so I'm not sure that I'm going in with the right information.

I think I found a part-time job to apply to. I'll share more if I decide to go for it.

There's so much I don't say because it's just not worth the confrontation, hassle or explanation.

I still want to be anyone but who I am.