I am slowly going crazy, 1-2-3-4-5; crazy slowing going am I, 5-4-3-2-1.

I wonder if I'm going nuts right now.  I'm pretty sure its the steroids, but I am on such an emotional roller coaster.  EVERYTHING is getting under my skin.  I'm ridiculously happy one moment, and blubbering like an idiot the next.

I'm feeling sick to my stomach.  I'm seeing things that aren't really there.  I can't focus.  It's ridiculous.

And it all boils down to the fact that I hate Multiple Sclerosis.  I try to down play it.  When folks at work ask how I am, or why I'm at work when I was just in the hospital yesterday, I shrug it off.  I say it's just MS, not a big deal.

I texted my therapist tonight to let her know I might be late for my appointment tomorrow - because infusion took FOREVER today.  Then, before she answered, I was able to move the infusion appointment earlier so it wouldn't matter.  She responded and said she was sorry to hear I wasn't feeling well.

I couldn't even answer that.  My gut instinct was to just shrug it off, but with her, I really shouldn't.  If anyone gets the real feelings I am having, it should be her.  Although, I know I don't even want to share that, but certainly not via text.  It can wait until tomorrow.

I just hate MS.  I think I'd rather have about any other disease, or even better - none at all.  But a disease that predictable, that would be so nice.  One that I would know what to expect, and when - that would be so nice.

Instead, I have this disease that things seem to hit me out of no where.  It effects EVERYTHING, and I even wonder if its making my mood this bad.  I've never felt so discouraged before.  My thinking is slow, my reactions are slow.  My mood is so blessed down, and that I don't even know if its the MS or just the dealing with MS that makes it so.  Either way, MS is the problem, and I really need to find a way to deal with it before it consumes me.

You always pass failure on your way to success. – Mickey Rooney

I had a doctor say to me today that I was an Avonex failure.  I don't like being called a failure, even if it has absolutely nothing to do with me.  I also don't necessarily agree with him.  I was sick - really sick a few weeks ago.  The fact that a relapse has started is probably from that.

Maybe he is right (which PS, his name is Dr. House), but I'd rather wait for Dr. Dayaw to say it.  If Dr. Dayaw thinks it, then I'll assume its right.  If not, then I'll keep on the Avonex.

Which of course, is a long winded way of saying that I'm admitted in the hospital.  I'm having a flare.  I have a really old roommate, who is scared to go home after what happened to her.  I don't actually know what happened to her, but she's kind of cute.  It's sad, but the nurses and doctors are super nice to her.

And now I'm getting a dose of steroids, and then I get to go home.  I'm not scared of going home.  I'm looking forward to going home.  I have to come back for 3 more days, as an outpatient, to finish the round, but that's ok.  It's SOOOOO much better than actually being here.

Roid Rage

Finally home.  Exhausted.  Cranky.

Things I know:
* I hate MS
* I hate cathedars
* I hate steriods
* I'm unhappy about this MS walk tomorrow, although I was very happy about it before this most recent hospital stay.
* I need to think my thoughts in order and blog properly, but that's not happening tonight.

almost home!

I'm still in the hospital, but going home tomorrow.  THANK GOD!  My MS walk is Saturday, and I'll be home in time for it.  I'll be walking funny from these steriods, but that's ok.  I'll just look more like I have MS :)

Still not peeing quite correctly yet, but I'm hopeful it will soon!

so far so good

Well, I figured I would definitly have a flare after everything that has happened in the last few weeks.  Moving.  New job.  Death of my mother.  Surely all those things put together would bring it on.

It hasn't, or at least not yet.  I don't feel particularly well, but I just feel sick.  Not MS sick, just plain old regular sick.  It's not even that bad.  So, knock on wood, all is going well.

what exactly is a leison anyway?

Ok, so there's good news:
* the "thing" that happened at the beginning of this summer was definitly not a seizure. 
* the thing in my tonsil is done being treated, so I can start the steriods.

Bad news:
* the mri showed lots of new leisons, and the ones that are the same are much bigger than they were.
* it's a relapse, and I've been on Avonex for 13 weeks, so it should be working fully by now and not be having this relapse.  She is going to evaluate in a few weeks, but I may be changing drugs.

Looking for the funny things:
(I'm trying to stay focused on the positive and look at the funny side of it all.  Steriods give me an awful taste in my mouth.....like pennies.  I said to the nurse about half way through, "can I have some cranberry juice and crackers to get rid of this awful taste?"

She said, "You are one of the ones that can taste it?"
I said, "Yes, can't everyone?"

She said, "No, just some."

My response: "Well then, arn't I just lucky."

a brand new day

So, I've still been feeling crappy.  I called the doctor Monday, even though I had an appointment for Tuesday because I felt so awful.  She could see me Monday, so that was good.

The bad news is that there really isn't anything she can do.  I have an abyss in my tonsil, so she doesn't want to do the steriods until that clears up.   She did order an MRI today, which was in a nifty new larger-than-before MRI machine, but that's about it.

I go back Thursday to see what the results said.  I'm really curious if I've gotten any new leisons and where they are if I did.

In other news, I was dreaming last night that I didn't have MS.  It's not as lame as it sounds, it was just a dream in which I was doing things and nothing was going on.  I was physically and psychologically normal I guess.  I didn't notice I didn't have MS, I just felt fine.  It was kind of nice, until my alarm went off and I woke up.

My first thought was, "Oh, I'm all better."  I popped out of bed and raced to the bathroom.  That was a bad idea.  I wasn't all better and woke up and moved far too quickly for someone that's dizzy.  Oi Vei.

In good news, it was cold today.  Not like winter cold, but definitly cold for a summer day.  That was nice!

Satan called. He'd like his weather back.

Phew.  It's horrible out.  I think it got up to 106 today, with a heat index higher than that.

Now I have MS, and that offers its own unique set of challenges.  But that was not even important to me today.  The safety and wellness of 700 children and 200 staff was much more important.  Were the counselors making sure the kids drank enough water?  Were the counselors drinking enough water?  Were they too hot?  Would the counselors know what to look for if someone was having a heat emergency?

It was a rough day.  I'm happy to report, everyone left alive, including me. 

Now, onto me.  I've been very proud of myself this week.  It's been hotter than haities this week and I've done ok.  I still think I'm having a relapse, because even when I am home and cool, it's still the same, but it's been stable.

I haven't called the doctor, since I know how the conversation will go:
Dr. Dayaw "I think you're having a relapse and should be admitted to the hospital for a few days."
Me: "No, I can't do that, I have to work."
Dr. D: "Ok, then we'll schedule a round of steriods at the infusion place."
Me: "No, I can't get there either.  I work from early morning until late at night."
Dr. *eye roll* "Then what are you doing here?"
Me: "I don't know, I was just scared."

That would sound so stupid.  I decided I wasn't going to call her until I had an answer that sounded even remotely intelligent.  That didn't happen, so I never called.  That made me quite happy.  I did imagine her to have an answer that included, "oh look, I have this one little magic pill that will completely cure your MS right away."  Since that wasn't very likely, I didn't call.

I give up.  I call uncle.  I've gone to the dogs.  I'm a lost ball in high weeds.  I'm as useful as a chocolate teapot.  I've at my wits' end. 

I'm all of these things and then some.  I think this is the beginning of a relapse.  It started with dizziness....constant and nothing relieved it.  I could deal.  It wasn't so bad.  I was annoyed, but was happy to just deal.

Then this afternoon, my vision has been affected.  I can't see to the left when I first look that way.  It takes like 5 to 10 seconds before I can actually make out the pictures.  I'm so very afraid that it's only going to get worse and not get better.

I called the doctor, and then instantly regretted it.  I don't want to be one of those people that calls the doctor for every little thing.  I guess though, this isn't a little thing.  It still annoys me that I am so dependent on her. I want to be independent, and one of those people that sees the doctor every 6 months or a year, or whatever is the recommended amount of time between neurologist visits.  But, I'm not.  I feel safer when she knows what is going on. 

Anyway, she ordered some blood work.  I went and had it done.  They will know the results tomorrow.  I'm hoping its something else, anything other than a relapse.  I don't have time for that right now.