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Thursday, July 28, 2011

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."

Tuesday, July 26, 2011

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!

Sunday, July 24, 2011

annoyed

Even when I feel the way I do, I still hate hearing about people suffering from MS or inflicted with MS.  Living with MS is a much better way to describe it.  Anyone who knows it, knows what the means anyway.

Saturday, July 23, 2011

questions that don't have answers

"I just try to remember GOD picked us strong people because an ordinary person couldn't manage and deal with this disease!!"

Someone posted this on a MS message board.  It was in a category labeled "guilt" and is totally meant to be inspirational and uplifting. 

That's not how I take it, at least today.  I'm mad that I have MS and constantly asking, "why me?"  Which, I know is a useless question.

I feel so hopeless about the future.  I talked to Kay, the MS nurse today.  She is so freaken positive, it's unbelievable.  I just want 1/10th of what she has. She has this incredible spirit and attitude and is just wonderful.  She says to give it a year.  Give it a year to settle and then things will get better.

I wonder if she's right.  I can't see how it can get better.  I feel like I'm a miserable failure at everything I try.  The thing is, I can tell myself to wait a full year.  Evaluate and see how I feel.  But then what?  What do I do after a year if things still arn't better?  I only see impossibilities getting through the next 5 weeks.  How I am going to last 4 months?  And then beyond that...

Friday, July 22, 2011

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.

Monday, July 18, 2011

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.

Sunday, July 17, 2011

some days you go to the circus and some days the circus comes to you

MS is kicking my butt today.  Between feeling groggy, dizzy and in general blah, I'm  also feeling hopeless and lethargic. 

Saturday, July 16, 2011

Am I lucky?

My MS nurse has MS as well....when she was first diagnosed the medications were just being put on the market for it.  She got to take something, because she won a lottery.  That's crazy to me.  I still consider not taking anything, and using the wait-and-see approach.  Then, I hear about her and how privledged she felt to get to take medication  and I feel completely ridiculous.

Tuesday, July 12, 2011

drug shortage

I'd be completely ok if there was a shorter of Avonex.  I mean, I'm used to it now, but it'd be fun if I couldn't take it and NOT be called a non-compliant patient.  It would be necessity.

http://www.newswise.com/articles/view/578555/?sc=rsmn

long, hot day


"MS may be part of me, but it is NOT the whole of me!"

I feel like it is.

Sunday, July 10, 2011

they got a file on me and it's a mile long....

And they say that they got all of the proff.  I'm just another case of arrested development, I'm just another wasted youth.


I'm completely in a Meatloaf phase these days.  Most of the time I worry about that, but sometimes I just like to belt out lyrics, really loudly while I am driving.

I could feel a funk coming on this morning too.  Life was good last night.  I saw some good friends from my old camp and catching up was REALLY NICE.  I have missed on of them so much, and to see her was really good for me.

Then, today, I felt it coming.  I wasn't feel particularly well because of my shot last night.  I knew it was happening, because I lied to my friends about how I felt.  Sometimes, I just get sick of complaining.  This morning I also finally looked up those therapists near me that offer evening and weekend appointments.  I really need to call to try and get an appointment with one of them.  I also called the MS nurse, just to chat.  That's always a red flag.  I like to talk to her when I am feeling down.  She's so positive, it always cheers me up.  She wasn't home though.

And then it all hit.  I've been trying so hard to not think the things I think, but it's to no avail.  My thoughts keep going back there.  I'm positive I won't sleep well tonight.  But I will make sure to call those therapists tomorrow.  The sooner I can talk about all this with a qualified health professional, the better.

Saturday, July 9, 2011

t-riffic

I've been feeling pretty healthy lately, and that is a really good thing!  The heat has been intense, but I've done well.  Between swimming, my cooling vest and keeping in the shade, it's been good.

I read an article.  http://www.oregonlive.com/health/index.ssf/2011/06/monkey_multiple_sclerosis_disc.html.  Mono went around my camp lst summer, and I wonder if that's why I got MS.

Tuesday, July 5, 2011

the world is weird

Casey Anthony was acquitted and I spent over $500 on a cookout for 600 people.  Oi vei.

Monday, July 4, 2011

headache

Oh my god...I have the worst headache I've ever had.  It started as a dull headache this afternoon and it's only gotten worse as the day progressed.  What is causing it?

I just read an article that said MS can cause headaches and migranes.  I've never had a migrane but I imagine this is what it feels like.  My whole head is in pain....from my jaw up to my temples.  I feel like it's possible that my brains will start oozing out of my ears.  There is so much pressure in there.

http://ms.about.com/od/treatments/a/headache_tx.htm
For a brief moment, I thought about calling the doctor or going to the ER.  But I'm not.  I need to get through this MS thing on my own and not call her for every little thing.  But dang, it hurts a LOT.

time to breath

It's been a long weekend, and while I've still had to work, I've also had some time to breath. 

We went to see fireworks last night.  Just being out and about felt really good.  I have a foster child here, she is on a bit of a respite pass.  I think it's more respite to her than her caregivers though.

And this time to breath, I've used quite a bit of it to sleep.  Catching up on sleep has been very nice.  I have no idea what the results from my EEG were, but I was definitly sleep depreived.  I feel asleep very quickly.

This time to breath also gives me time to think.  Thinking is bad.  My MS nurse, she has good theories on everything.  She thinks I feel hopeless and that is bad.  I wonder how she can not be hopeless.  My doctor said the obsession I am experiencing is normal.  I feel like it should be gone by now and since it's not, it never will be.  She said to give it a year.  I wonder why a year.  Why is a year a magic number?  Is it because after a year, I will not experience "my first" whatever with MS.  There was my first Christmas with MS.  My first summer with MS.  My first heat wave with MS. 

Oh well, time to get motivated and then go back to being busy.  Busy is good.  I think a lot less about me when I am busy.