Saturday, January 2, 2016

If wishes were horses we'd all be eatin' steak

AKA drunk post #1 2016

Basically,  I'm just gonna whine a moment.  As I do. As you know.

About a few random things.

Guys will have sex with anything - that doesn't actually make me feel.better.  I want to feel even remotely attractive, if possible.  Not just like I'm as good as a seat cushion.  I get that it's supposed to alleviate my worry over being terrible in bed, but really - the idea that an inanimate object could be about the same as sex with me is fucking depressing.

We make time for who we want to spend time with.  You and I don't text for hours, we don't spend any one-on-one time together.  We use other people and busy schedules as a shield.  You'd rather spend time with a penis you just met than with me.  Which I get, because I don't like me either.  But we need to be honest.  You get very little from hanging out with me, other than a fat ugly friend to talk about your sex life with.  If it were a deeper connection, we'd choose to spend time together and make it quality.  The problem is, it's more for me.  And being acutely aware of how little I matter - vendors compared to strangers - hurts my heart more than I can express.

I know I don't give you the opportunity to choose me.  It's because I'm afraid you won't.

And because, deep down, I don't feel like I'd choose to spend time with me, either.

Saturday, May 26, 2012


Had an appointment with my opthamologist the other day.  Had to cancel LS time, as well as therapy with IP, because the doctor dude takes a good three hours or more every time I see him.  This appointment was no exception.  Really wish I could just go back to the hot doc for check-ups, but whatever.  It's all a big chain, really.

So, I sat in a stifling waiting room for about an hour, then saw the doc directly.  That was different - usually I see one or two other pees, first, and they dilate my pupils and maybe run a couple of tests before sending me back out to wait for the main doc, but this time I got to see the big guy first.  Noooooo dilation.  Happy days.

He ran his usual quick tests and asked a few questions.  I admitted that, while my vision is WAY better than it was, there is still enough missing for me to feel "off balance" most of the time.  It's not strong enough that I would even equate it with my vision, actually.  I'd be willing to bet that this was almost what it was like when I met Rose in California a few months before the vision loss struck more strongly.  I didn't notice it enough to think anything was wrong, but I was dizzy, nauseous, and had headaches way more often and more easily than I had previously.


I had a brief hope that I would be out of there in record time, but instead, I got sent out to the waiting room to await more tests, and then had to go back in and see him for the results.  I did the field test (click the button when you see a light), and a couple of more sensitive scans and things.  All of which I'd done before, but he wanted to compare the results with last time.

Turns out they gave a much more accurate picture of my current vision state than I could myself.  He shone a light into the back of my eyes (well, as far back as he could without dilating them), and showed me the different results from this time versus almost a year ago.  HUGE change.  Last time my left eye had some green areas of good, but the rest was all yellow and red of not-so-good.  This time, though, it was almost all green good, with a bit of yellow-red-bad right near the centre on one side.  Which is pretty much exactly how I feel, so that was awesome to get a pictoral representation of the difference for reference later, as well.

Now...this part I may need to research a bit, just for my own self.  It's not important to anyone but me, anyway, so i'll just talk about it briefly here.  He said the "cup" of my left eye was enlarged now, compared with how it had been before, and that it was an indicator of damage along the optic nerve.  In terms of the MS diagnosis, that's just one more piece of evidence to add to the pile.  But in terms of living inside my body - I'm concerned that this is as good as it's going to get.  My eye may not ever get any better than it is right now.  I mean, it's totally fine, in that it's still way better than it was for most of last year, and that is a huge relief.  I just...I don't know.  The idea that my eyes were healthy and that it was my brain lesions and such tricking me into thinking I couldn't see very well - that was what got me through, you know?  The understanding that the condition wasn't forever, and that my vision would eventually return to normal once the optic neuritis cleared up.  The idea that it'll never fully clear up is kind of depressing to me right now.  I'm so grateful that it's not worse.  I guess I just may need to let go of the rest, after all.  It wasn't a slow decline, and once I knew what the problem was, I was happy knowing that my eyes were okay.  Now to find out that one of them isn't quite as okay as it used to just makes me sad.  I hadn't prepared for that possibility, so being told that my dumb brain issue has actually affected my physical eye/vision now - it was just a tad more than I was ready to take in.

I guess I just wanted to write it down.  It's easier than trying to find someone who will listen, at this point.

Until soon,


Wednesday, May 23, 2012

Today's The Day

I forgot to mention in the first night do-over...usually about 2 days after (in this case, the middle of the night last night), the thigh muscle I injected into decides to knot itself into a wee knot of pain.  It's not horrible, but it is uncomfortable.  I forgot to sort of massage the area after I'd injected, too.  That's supposed to help spread the medication out, and maybe make the knot a little less yippy. 

I know the first time around (I think I did the injections every week for just over 2 months before the liver enzyme break), I got the sore thigh after every injection, along with all of the other side effects, but obviously 2 months is not enough time to develop any level of tolerance to the whole process, so we'll see how things go this time.

This is just a short post - I realized I'd forgotten to mention the after-effect in my other post, so wanted to throw it in now, is all!  ;)

Until soon,


Monday, May 21, 2012

Avonex - 1st Night Do-Over

I started taking Avonex PEN injections in December 2011, but had to stop temporarily in February because my liver enzyme levels were fluctuating more than my neurologist thought they should be.  He sent me to a gastroenterologist for more tests and, while the cause is still unclear (and they want to have another look at my liver and kidney on ultrasound in a few months), it's been decided that we are good to return to Avonex injections, so long as we keep an eye on things for awhile.

So, I am back to blood tests once a month, and trying to find a day per week that I can give up to the side effects from the injections.  I'm trying to take fewer Advil and Tylenol caplets on shot night, and the first day, so last night I did very little to pre-treat, and tried to just deal with things as they came up.  I was a little sore and dopey from being out in the sun so much the previous two days, so I took one Advil about a half hour before doing the injection, but more for how I was already feeling than a desire to pre-treat.

I was nervous about doing the injection.  Nervous, alone, sad, angry...the usual shot night emotions, I guess.  As I was setting everything up within easy reach, I realized that I'd forgotten to feed the cats (and that they'd let me forget), so I think I was able to push through the actual process a little more quickly than I may have if I'd had nothing else to do after.  I paused the TV, went through the instruction guide, and filled out the first part of the journal entry for the night.  The rest I put in my phone, and decided to write it out in this blog entry, both to help me remember for next weekend, and to perhaps help anyone else starting out with the Avonex Pen.  There wasn't much out there for me to read in advance so that I would have an idea of what to expect, so maybe having one more blog out there might help someone else.

I did the shot just before 8pm.  It hurt, which means I probably had the angle a bit wrong.  I did it in my left thigh, above the knee on the outside.  I think this one bled more than any of the other ones.  Maybe I just didn't apply pressure long enough, though, and it stopped shortly after the bandaid was on, so that's good.  I left it on all night and, because it's warm out, I went to bed with the windows open, shorts on and a t-shirt.  That part would change a bit as the night wore on.

It's hard to tell if my first side effect was extreme fatigue, or if I just happened to be exhausted after two busy days in the sun.  I made myself stay up and watch The Killing so I could write abut it today for the other blog, but I was pretty delirious, so I may need to watch it again before trying to write about it, but by the time I went to bed at 10pm, I was still mostly just feeling extremely tired.  I made sure to drink some extra water, and to keep some handy in case I woke up thirsty in the night,because apparently hydration is key in dealing with side effects.  I actually can't remember if I took any more Advil or not, but I don't think so.

Woke up around 1am the first time.  I wentto the loo, and realized I was freezing and shaking, so I grabbed a light sweater before going back to bed.  I took a Tylenol and checked my temperature in case I had a fever, but my temp was actually kind of low (36.3-ish?), and by the time I thought the Tylenol should have kicked in, I was still freezing, so I changed into flannel pj pants, as well.  My body hurt - my joints were all aching.  I felt all shaky and couldn't seem to get comfortable.  I remember laying flat on my back with my hands tucked under my butt, just to try and hold still, stretch things out, and get warm.  I drifted for a bit, and around 2:30am whatever it was seemed to break, and I started removing layers again so I could sleep better.  My temp was still pretty mjcuh the same, but I was a lot more comfortable overall.

Next stage woke me up at 4:19am.  I had a headache, my body ahced everywhere, and my skin felt like it was on fire.  Not hot, exactly, but it stung.  Everywhere.  My temp had gone up to 37.8, which...I have no idea if that's high or low or normal.  But it was more than a degree higher than it had been when I was cold, and now I was hot, so I thought that might have something to do with it.  I took an Advil to try and deal with some of the pain, and hopefully at least get back to sleep.

I woke off and on for a bit, and when I got up at 6am to feed the cats, everything was hurting again, but not nearly as much as it had before.  I changed back into shorts, took off the bandaid, and went back to bed.  I woke up around 9am, read until roughly 10am, and then got up to make pancakes.  I actually feel pretty good, for the most part.  Though it's now 20 past 1pm, and I am hurting quite a, too.  I think I just took an Advil not long ago, though, so hopefully the ache will subside some for awhile.  Maybe I'll bring the fan in here for a bit to cool off, and keep drinking water, water, water.  Had a cold coke with the pancakes, but water is really the important thing.

That's it for now...too uncomfortable to think very well.  Time to change tasks for a bit!  More soon!


Friday, May 18, 2012

MS vs Canada's Wonderland

So tomorrow (Saturday) is my first day trip with my Little Sister (through Big Brothers Big Sisters), and I am kinf of stressed about it.  LS and I don't know one another that well yet, and instead of hanging out for an hour at her school like we're used to, it'll be for the whole day - at Canada's Wonderland.

I mean, for starters, I'll be pretty much solely responsible for someone else's child for the duration of the day, which generally stresses me out, anyway.  But then add in the fact that we're going to a place where I can't do most of the stuff she'll want to do, and I'm...not exactly looking forward to it.  She really wants to go, though, so I made sure to get us on the list!

It should be fun - I'm sure we'll have some fun.  But I really hope and pray that I can find another Big to go on the rides with her, because I just can't.  The MS started off by completely messing with my equilibrium - before it actually messed with my vision.  Now my vision has more or less cleared up again, but the sense of imbalance remains.

Is that a word?  Imbalance?

I get dizzy and nauseous on public transit now, so I intend to not really ride anything tomorrow.  Which will suck for LS unless I can find a suitable ride buddy for her.  I'll even hang in line with them, or watch someone else's Little while they go on the big kid rides, but I can't do it.  Go-Karts and bumper cars and stuff that I am either in control of, or that don't do much (I think I can handle the kid ride where you shoot ghosts for points in a haunted house thingy)...all of that seems more my speed.

And the arcade.  I could happily spend half a day in an arcade, but I'm pretty sure my LS won't be up for much of THAT!  lol

I also haven't been to the park in years and years - not since I was a kid, and I think I only went once, at that.  So I'm sort of terrified of getting lost, or losing the kid or both.  I'm trying to just go one step at a time, and telling my inner must-plan-everything OCD piece to just settle down.  I'll just do my best to remember to take everything I might need (just added Nortriptyline to the list - whew!), and go from there.  The bus will be the next step (after leaving on time to get there for 9am), and then take each step after that as it comes.

It'll be okay.  I just hate to be a disappointment.  If I can manage NOT to be, that would be great.

Wednesday, May 16, 2012

Kate's Last Leaf Falls - November 15, 2010

This is what I wrote about the day Kate died.  To remember...

What's Going On?

I'm really not feeling well.  I know in my mind that there are a number of reasons for this.  I started my period a few days ago, so naturally, my body physically feels like crap, and my hormones are out of whack, making me sad and angry, depending on the moment.  That may account for the fatigue, dizziness and general nausea I've been feeling, as well as the headaches.

I'm also probably suffering some Nortriptyline withdrawal.  I talked to my neurologist, Dr. Wong...last week?  I said I couldn't handle the effects of both Avonex and Nortriptyline, because combined they were making me too tired to function day-to-day, so that night I dropped down to 10mgs from 20mgs a day.  Still taking it at the same time every day, just one pill instead of two.  It's not a huge change, and I barely notice a difference in my energy level (and even that will be gone after I start back on Avonex injections Sunday night after the ball game), but I know when I forgot to take it for a couple of days last month (ah, convention weekends), it really messed me up emptionally and physically for awhile after I got back on schedule.  So I'm likely suffering from that - it's maybe just less obvious to me this time, given that I am still taking some of it every day.