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Wednesday, June 29, 2011

tomorrow is going to be hell

I went to the doctor.  I'm not really sure what she thinks, but she has ordered an eeg.  But one where I am meant to be sleep depreived.  Which is not really a big deal, as I'm pretty much always sleep depreived in the summer anyway.

Except that included in the instructions is that I can't have any stimulants for the 24 hours preceeding this thing.  That includes cigarettes and caffeine.  Those are two of my most favorite things.

My doctor just said she was doing this sort of study since if she did the other and it came back with no seizure activity, she would end up doing this she is just starting with this one.

Now, here's my thoughts - I'm not sure what I want it to find out.  If it finds out that I do have seizures, well that's bad.  If it finds out that I don't, well then, I still don't know what happened to me last week.

Monday, June 27, 2011


Dear Doctor,

Please decide that I did not in fact have a seizure and defintily do not decide to take my license away for 3 months.  That would really cramp my style.  Thank you.

Sunday, June 26, 2011


I hate schedules and it has nothing to do with MS. 

a crazy week followed by the ER

So the week has been insane.  I've slept very little, ate very little, worked a lot and was doing it.  I was tired, but all was pretty good.  Until yesterday.  Yesterday I was at work at 4 am.  A little after 5, I got up to go get something and the next thing I remember is that I was on the floor.  I felt so groggy and awful and it took me forver to figure out where I was and what happened.

I really had no idea what happened.  In one way or another I passed out.  What I'm not sure about is whether or not I had a seizure.  The only thing that made me wonder if I had a seizure was that I bit my lip.  Either way, something bad happened.  And it took me forever to come to.

There wasn't much I could do about it.  It was the open house at my camp and I wasn't leaving fo it.  My boss was great about....he told me to go, but ddn't argue when I said I wouldn't.  I called the doctor and he said I should go as well, and my plan to go after open house.

By time open house was over, I wasn't feeling so great.  My vision had changed and I just decided to go to th hospital.  The triage nurse said it probably wasn't a seizure, since I hadn't had an accident.  The nurse in my room didn't agree with that.  The doctor thinks it probably was a seizure since I bit my lip.

There was a bit of a fiasco about leaving.  The doctor came in and asked me if I wanted to be admitted.  I said no (of course!).  He agreed with that as he said if I was admitted, they wanted to monitor my heart and he didn't think it had anything to do with my heart.

Secod, he wanted to know if I wanted a spinal tap to rule out menegenetis.  I had the vaccine and so I said no.  He was also ok with that.  But whent he nurse came to discharge me, she had papers for me to sign that said I was signing out against medical advise.

I couldn't sign those.  If I did, then my insurance might not cover the follow up appointments.  I told the nurse that and she said she would go tell the doctor I was staying.  I was ridiculously bummed.  But he came in and said I didn't have to sign...basically he was trying to cover his backside.  But I promised I wouldn't sue him. 

Monday, June 20, 2011

go day!

My sight has returned.  The weekend was pretty crazy, and between stress, lack of sleep and my shot last night I lost vision again.  I was dizzy, and everything looked like I was under water.  But a good nights sleep, and it's all back.  That's a very good thing!

Staff training starts today.  I'm very excited!

Friday, June 17, 2011

I'm so smart!

Good grief.  It took quite a bit of work, but I figured out how to post comments to my own blog.  It was a little ridiculous.  I also think its backwards to what it should be, but whatever, it's done.

Now, I have a headache

Oi vei.  My doctor wanted to get a CT Scan done of my neck before this summer camp craziness started.  As I was falling asleep last night, it occurred to me that I hadn’t yet heard back from her office as to when my appointment was.  I planned to call first thing this morning to find out if she able to get me an appointment.

Now, let’s be clear.  This woman who works at my doctor’s office is fairly brilliant.  Brilliant in that she can talk her way though anything and convince anyone to give her things or do things that are against policy.  It’s that really helpful to patients way – get your insurance company to agree to tests they wouldn’t otherwise cover, or get radiology to schedule things that should have a month long wait for…she’s just good like that.

So, I get to work this morning to a voicemail from one of my staff.  He said, “I’m not sure if you got my message on your cell phone….” That makes me look at my cell phone and realize I have three messages I didn’t know I had, one of them from Dr. Dayaw’s office.  Rut-row.  It’s Becky, who has I have an appointment today at 10:20 AM, but I have to be there three hours early.  It’s now 7:30 and I am a half hour away from the hospital anyway.  I panic, organize someone to take care of things for me, and head over.

I get back into cell service about half way through my drive and call the preregistration number for the hospital.  I explain to her why I’m late and ask if they will still take me.  She calls radiology and they want to talk to me.   They told me I misunderstood my doc’s office and that I didn’t have to be there 3 hours early.  I had to fast for three hours.  But, if I was on my way, they’d take me now.  I should note, I listened to the message from Becky, and she definitely said 3 hours early, so that wasn’t an MS moment.

So, lucky me, I got in there, got the CT Scan, and got out all before my scheduled appointment time even.  The woman in preregistration also had a lovely conversation with me about the Y and how much she loves it.  The radiologist who did the actual CT Scan also talked to me for a quite a while about MS.  She was asking lots of questions, and it made me wonder if she suspects she has MS…just the kind of questions she was asking.  It wasn’t polite chat, it was legitimate questions.  Who knows?

I do know that I am very grateful to Becky, who is the best finagler ever, and is able to get appointments no one else possibly could.  I also know that dye they give you – they said I might feel hot and that that feeling was one of the side effects.  She did not tell me I would think I wet myself though.  I was pretty concerned, until I realized I wasn’t actually wet , just warm and it was the dye and not actual incontinence.  Phew.

Thursday, June 16, 2011

I'm usually pretty good with technology

So, why can't I comment in my own blog????  It keeps taking me to this logon screen, which I do, and I press submit and it takes me right back tot he logon screen.

Nevermind that it keeps trying to post my comments as anonymous before it doesn't let me post anyway.  I'll figure it out later.  I'm too tired now.

chicken schnikes

I wimped out.  I didn't talk to my doctor about ANY of the things on my awkward agenda to talk to her about.  I planned to, I really did.  But she started talking about my neck pain and she's pretty convinced it's not neuro.  Which, in my mind, then means it's not a big deal.  She thinks worst case scenero though and she wants me to have a CT Scan. 

The problem, my job is CRAZY now.  I don't have time to have this stuff done.  I'm a summer camp director, and this is my busy season.  It's like February through Apri for a tax agent.  It's like an out of control fire for a firefighter.  It's just my life.  I really can't deal with anything personal during this season.

She said, "your health comes first," which is true, it does, but I also want to have a LIFE.  A life means doing the things I love, which is this.  I can't imagine how bad it will be when I can no longer do it.  Another strong point, that I didn't make to her - but is strong nonetheless.  Without this job, I won't have health insurance, and without health insurance, she won't be in my life anymore.

Tuesday, June 14, 2011

multiple universes

I was talking this morning about "Rabbit Hole" and the theory of multiple universes.  In each place you are a different person, in a different situation and all these universes run parrell with this one.  We made a bit of a game out of figuring what forms of me there are out there.

* One without MS (of course that was the first one I thought of)
* One where I'm a criminal
* My favorite color is...(ack) pink
* I am a tatoo lover
* I don't like working with children
* I have lots of money

In order news, I got a bill from my doctor today.  I was keeping track of copays, cause they never asked me for them there, but then I forgot and now I have a big bill that I need to work out how I am going to pay.  I have an appointment this week, but I'm not sure if I have to pay this whole bill first.  If I do, I may need to cancel it.  The sucky thing is that I can't reschedule it until after August.

I had been working myself up to talk to her about some things that I just really don't want to talk about.  One just seems silly and like I need to get over, and the other, well, it's a little ridiculous.  I can't find ANYTHING anywhere on the internet about this being from MS or a side effect from Avonex, yet I've been keeping track and like clockwork, it always happens 2 days after my shot and lasts until day 5.  Anyway, it's embarassing and I know she's a doctor and yadda yadda yadda. 

I have until tomorrow morning to work out how to pay this bill, or I have to cancel the appointment.  Other than those two pesky things though, I feel good!

Friday, June 10, 2011

is the unknown better than known?

So, the xray has confirmed I don't have an extra rib.  Which, is kinda sad, cause that woulda been a cool bit of trivia about me.  But I don't.  So, I don't know what is wrong with my neck.  My primary doc is out, but she had another doctor covering for her.  He was VERY NICE.  I'm usually fundamentally opposed to male doctors, but he was lovely.  Not quite my neuro, but good nonetheless.

He said I should talk to my neuro about it when I see her this week.  Then I guess if she is still adament about it, call the primary.  I'm a summer camp director and next week starts camp.  For the next 10 weeks, my life will only consist of camp, and pain or not, I won't deal with it until September.  I love this life :)

Wednesday, June 8, 2011

I have a wierd pain, and it's not neuro!

I think I love that fact that's my strange neck pain isn't MS related.  I also love Dr. Dayaw.  She's so smart, straight forward, down to earth and wonderful. 

I called the office yesterday after the third person asked me why I hadn't called the doctor.  They called back later and said she would just see me next week (for my regular appointment), and if it got worse to go to the ER or call my primary. 

But then she was at the MS support group tonight.  She did a presentation about MS drug medications and what not.  Afterwards, I was talking to folks and ended up talking to her.  Which by the way, is just awkard.  I feel like she's this genious and prestigious person and I'm just me.  So talking to her in real life is awkward.  And she asked me, "so what's going on with your...foot?" That's another reason why she's great.  She didn't even see me yesterday, just my name and she remembered.  Admitingly, it was my neck, but close enough.

She looked at it and poked and such and then declared she thought I had an extra rib.  Now of course, I'm no doctor, but I have no idea how a 33 year old woman just suddently develops an extra rib. But I will call my regular doctor tomorrow and ask her to order an Xray, which of course is what Dr. Dayaw said to do.

I should also mention I balked a little about getting the xray and my doctor said, "it doesn't hurt...why don't you want to get it done?"  And when I just shrugged, she said, "you don't want to know the results." 

She's brillant and honest and I just adore her.  I'm SOOOO happy she's my doctor.

Monday, June 6, 2011

one of those people....

So, for the past few weeks, I have been having this really weird pain.  It's in my neck, right above the boney part (also read: no pertinent organs located anywhere in the vicinity).  It's this sharp kind of pulsating pain.  When it's acting up, it shoots down my left arm as well. 

So, the first time it happened, if it had been any lower, I think I would have gone to the hospital.  I describe this pain to my friends as "my heart attack in my neck." 

Anyway, my friends asked me today if I told my doctor.  I did not.  My doctor said a while ago that I should tell her about things that last more than 24 hours.  This did not.  It came and went.  It didn't last more than 24 hours just happens every couple of days.

I didn't want to call, cause I didn't want to be one of those people that calls about every little thing.  But now I'm afraid I'm one of those people that doesn't call when symptoms are acting up and something could be done about it.  Pahumph.

Sunday, June 5, 2011


I've been following postsecret since the beginning, almost.  When I found out about, very few people had.  I felt cool.  I've read all the books.  I've seen Frank Warren in person.  I had the kids in my afterschool program send in secrets (none of them were published).

I want to send an MS secret.  I've never seen one about MS.  But I have no idea what I'd send in. 

Saturday, June 4, 2011

Save the Boobies. Don't let cancer steal 2nd base.

That was a tshirt I saw tonight.  MS has some cute t's, but that one is by far the best.

So, I did my shot again tonight.  I was super ridiculous about it again, and it hurt again, although not as bad as last week.  I've been feeling pretty sad again lately.  No matter how silly I sound, I am definitly going to talk to my doctor about it when I see her in a couple weeks.

Wednesday, June 1, 2011


I am so proud and happy with myself.  In the evenings, I always feel so bad, and I was worried....really worried about my job and the evenings.

And there were big storms going through my area tonight and I did ok...better than ok.  Great!  I could make decisions, deal with issues, and life was just good.  I feel so much better knowing that when it counts, I can do it.  Not only can I deal with not feeling great, I don't even notice when it counts.