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 kind....so 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.

letters

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.

schedules

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. 

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!

Awake

taking my medication without taking nyquil is bad idea

tonights postsecret

soy fundamentalmente roto

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.

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.

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!

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 :)

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.

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 straight...it 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.

postsecret

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. 

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.

proud

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.

forgetful

I forgot I had MS today for most of the day.  It was pretty nice.'

And I think I got mysef a ride for the MS Bike Run.  By bike, I mean motorcycle :)  It will be a GREAT day when I can say I definitly got a ride.

obsession

So, I have had a lot of time to think today.  It's been a great memorial day, pretty relaxing.  But lots of time for me think.  This MS - I'm obsessed with it.  It's not just that I'm learning how to deal with it, its an obsession.  It's all I can think about and every moment of the day it pops into my brain.  Is this normal?  I have no idea, but it feels wrong.

parades!

I live on a parade route.  That's just fun.  A few weeks ago, there was a Little League Kickoff parade, and today, the memorial day parade.  It's pretty exciting to hear the bands and such and go sit on the front lawn.  It's also nice that I live in a REALLY small town so the parade is pretty short.

ooouuuuch

Oh my goodness...my avonex shot HURT SO MUCH tonight.  I'm super ridiculous about doing it every week, but every week it doesn't hurt much and I wonder why I'm so silly.  This week, I was quite literally screaming.  I couldn't even push the stuff in me it hurt so bad.

Thankfully, my sister and brother-in-law are here and he pushed it in.  Good ridance.

What you see depends on what you are looking for.

Someone I don't know friended me on facebook last night.  Her profile picture was the "Peace, Love, Cure MS" picture, so I accepted.  I try not to accept people that I don't appear to know and have no mutual friends in common with, but I figured she found me in one of the MS groups.

We mailed back and forth a bit.  She seems sane, generally positive and very interesting to talk to.  We started talking about doctors and such, and she doesn't like hers very much.

I told her about my doctor, of whom I love.  I almost don't want to say her name, in case someone happens upon this blog and is looking for a new doctor.  I feel like she's something of my little secret, and I don't want to share.  It's silly, I know.  Her name is Dr. Dayaw. 

She's a neurologist, and I figure she must treat lots of patients with all kinds of things, but when it comes to MS, she's a complete expert.  She doesn't give you any BS about it, she just tells you like it is.  She's by no means a fortune teller, and has no idea if I'm going to lose my sight, or not be able to walk anymore, but she's upbeat and very practical about it.

When I first met her, I went to the MS Center around here.  They have everything there, and on your first visit, you meet everyone and just learn the kinds of things they do.  I didn't even know they had a doctor there, which I guess, if I thought about it, I would figure they did, but I had never thought about it.

By time I actually saw her, I was on information overload.  I was still in the mental place where I did not want to deal with my MS, but I knew that I wanted resources that I could turn to if I had a flare-up again.  The biggest resource was a neurologist.  So, she saw me there and then asked me to come to her office for a follow up. 

I had no idea what to expect.  She started to talk to medication, and it wasn't even a choice.  It wasn't between should you do it or wait and see what happens?  It was just expected that you start the meds.  The sooner you start the meds, the better.  It was which one are you going to take? At this point she gave me four packets of literature from the medication companies.  She said to read them, and come back in two weeks and tell me which you pick.  She did give me the basics of each, with their ups and down.  This one is every day, but the side effects aren’t as bad as this one that is once a week.    Yadda yadda yadda.

As I left the office, I didn't like her.  I just wanted a doctor who knew which medicine was the best and told me take it.  I didn't want to read any information and I didn't want any independence.  I didn't want to deal with MS really.  Truthfully, I never read any of those books.  They are still sitting in a pile, in their shrink wrap, on my bookcase.  I found out I had a former classmate with MS, and he took Avonex, and next time I went to see her, I told her I wanted Avonex too.

I still didn't like her much.  I didn't hate her, and if I had to have a neurologist, she was good enough, but I didn't have the appreciation I have for her now.  A few weeks later, someone on a message board told me I shouldn't be taking any of these drugs.  They don't really work and the doctor just gives you the one they get the most kick-backs for from the drug company. 

The moment that I could tell him that my doctor didn't actually pick it, I did, was the moment I knew my doctor was a sheer genius.  I don't know if it was on purpose or by accident, or just by a desire to have her patients control their own lives, but for whatever reason, she's a genius.  I will never wonder if she is telling me something because of the gain to her personally, simply because in that first interaction, she removed herself and any perks from the mix.

The neuros I saw in Springfield were...interesting.  There wasn't one that I would want to be my doctor.  I felt like they were all really smart people, but had no actual ability to speak to a patient.  When I could get them to tell me something, they would inevitably get paged away before I could really understand anything.

Dr. Dayaw isn't like that.  I'm sure she is just as busy as all of them, but she actually takes the time to talk to you.  I went to the MS support group last month for the first time.  I figure, since MS is all I can seem to think about, I might as well meet some other people who would be willing to talk about.

It's at the hospital where the MS Center is where she works.  She came to the group - which was shocking to me.  I figured doctors were far too important and busy to come to support groups.  I still don't know if it’s normal for a doctor to be there, but in any case, she was. 

When she arrived, we made eye contact, but she didn't show that look of recognition.  You know, that smile, or nod, or look in the eyes, that shows you know someone. 

I was kind of sad about actually, as I think she is the greatest person in the world.  But then I thought about it, and I'm certain she has hundreds of patients and she's only been my doctor a few months.  I'm doing fairly well, and the reality was, she probably shouldn't recognize me.  And I wasn't quite so sad about it.

But the group was still talking to me, and letting me introduce myself and what not.  I was talking about work and she said, "she hasn't told anyone she works with about her diagnosis yet..."

It was at that moment that I knew I had the best doctor in the world.  Not only did she recognize me, she *knew* who I was.  She knew my story and where I was in life.  Maybe she's gifted with some kind of photographic memory or something, but I like to just think it’s because she cares.  As a patient, I'm not just a disease, I'm a person.

One of my favorite songs is called "The Endless Day."  I honestly don't really know what it’s about, but I've decided the middle verse is about her.   She's totally the sun with these clouds.

"The clouds are a curtain.  The clouds are for certain.  The clouds have arrived and they will never go away.  The sun doesn't matter.  The sun doesn't chatter.  The sun just knows that it’s a star.  The sun is convinced that its a star, so it watches the clouds.  It watches the clouds.  It sits back and watches and the clouds just drift away."

this is the sound of one voice...

Today was a GREAT day.  I felt like a productive member of society and learned quite a bit.  I participated in a study that was trying to link fatigue and MS.  I just saw the information online, and then did a telephone survey, found out I qualified for it, and did it today.  It was very cool!

I think I've been so busy with work, that it has become all I do.  Well, work and think about having MS anyway.  This was productive and a welcome change.  The students running the study were super nice and had a lot of information. 

I should say, I'm a little worried I was meant to tell my doctor I was doing it.  They asked for her contact information and said they were going to use it to confirm I had MS.  I'm not sure if I should be telling her, but I didn't.  Oops.

So, another new symptom, that I'm not sure if is MS or not.  I get this pain in my neck, like right where the bone is.  It's incredibly painful and if it was any lower, I'd worry it was my heart.  But its definitly in my neck.  Once the pain subsides though, then I feel like I've pulled a muscle in my back.  It's weird, but nothing I have time to worry about this week.

So anyway, the study.  First, they did all kinds of measurements.  My height, weight (which I think I lost a LOT of weight since November - but their scale was also extremely old), my arm lengths, my leg lengths (which were all different).  I had to so some tests about sensitivity on the bottoms of my feet, and my muscles to flex my feet. 

I did this little obstacle course thing and then walking at different speeds.  Next they hooked me up to all these markers (sensors), and it was balance testing time.  I had to lean forward, backward, standing one foot in front of the other.  Now, it was treadmill time.  That was pretty good...just different speeds.  Except while they were recording, I wasn't allowed to hold on.  At one point, when it was going as fast as it got, the power went out.  That of course made the treadmill stop.  Well, they were recording at that moment, but I had to grab on or else I would have fallen.  It was pretty funny...all the testers were shocked and worried about me....at which time I was just worried that I ruined their recording.

Finally, the same balance tests again, after I was fatigued from the walking.  All in all, it was pretty good.

I fight like a girl...

Today was another hot day, but I felt much better than yesterday.  That's always a good thing!

different name

I wish I named my blog something else.  I am so much more than just a person with MS. But since the diagnosis, that's all I feel like.  Everyday, I think about what I am feeling and I relate it to MS.  Do I feel crappy because it's hot and that makes MS worse?  I'm feeling really good, is that because I had steriods a few weeks ago? 

wishes

I wish:

* I could have just one more day to live without MS.  I want t know if what I'm feeling is from MS, or just situational.
* I could find something to be thankful for - other than my doctor.
* I would stop feeling sorry for myself.
* I could think of MS as another challenge in life, and not an obstacle.

teach me what you know...

forgive me as I grow.

Today was a much better day.  I do get frustrated when I read about people asking for help and then others tell them its hopeless, or their doctors are corrupt, or medication is ineffective. 

But, I got over that, and then proceeded to have a good day.  Work is crazy now, and will stay that way through the summer, and that surprizingly works well for me.

another day

I'm taking Avonex.  It's a disease modifying drug.  I didn't want to take any meds.  I wanted to just feel ok and be one of those people that didn't take meds.  But some really smart people, including my doctor and a MS nurse said I should definitly take them.

It's meant to get easier, giving yourself a shot.  For me, it seems to just keep getting harder.  I read a news article this week that said 60% of people on these meds quit.  I wanted to be one of them. 

I skipped the med Friday night.  I quit quitting and did it Saturday night.  Despite the fact that I've felt awful today, I know its good for me.  The overwhelming feeling of sadness is the worst.  And I'm not sure if I feel that way because I physically feel bad, or if I physically feel bad because emotionally I feel bad.  Either way, today has been awful.  I'm going to bed with the knowledge that tomorrow will be better.

the first one...

‎'Do not fear death, but rather the unlived life. You don't have to live forever. You just have to live.'
Angus Tuck, Tuck Everlasting

A friend of mine posted this as her facebook status.  It seems really small or insignificant things can spark some weird reaction in me.  This one did it today...I've been in a funk all day, but then this just started something.  I decided to channel the feelings into a blog instead of just playing them around in my head.

So, a little background....I was diagnosed with multiple sclerosis in November of 2010.  I had just been offered a new job and was planning to move to the other side of the state at the end of the month.  The fateful day went something like this:

I had been dizzy for a few days.  I didn't know what it was, but tried to sleep it off.  On Wednesday of that week, I had to go into work.  While driving, I noticed that I couldn't see well looking to the sides.  Looking into the rearview mirror was weird - I couldn't see out it.  I called my friend who was a nurse to find out what she thought.  She knew I hate going to docotors and did not have insurance at the time, but was also worried about the symptoms.  She said it could be some kind of infection under my eye and we agreed that I would try to sleep it off, and if it wasn't better in the morning, I would go to the ER.

It wasn't better in the morning.  I still couldn't well when I looked to the side, although if I looked sideways for a while it got clearer.  A friend brought me to the ER.  The doctor saw me, did the best eye exam he could, and realized he did not have the equiptment he needed.  He called an optometrist nearby, and sent me there.

She ruled out glacoma, macular degeneration and detached retina.  She said, "You don't have anything I can diagnosis you with, I'm sending you back to the ER."  I sighed, with an obvious disappointment.  "You don't want anything I have," she said.

I replied, "I don't want anything they have either."  I had no idea how right I was.  When we were leaving, I told my friend I didn't want to go back.  I just wanted to go home and sleep in my bed.  I knew I had to go back, but I didn't want to.

Once back at the ER, the doctor was waiting for us at triage.  He told me they were admitting me.  I bawked, as I did not have insurance, but they assured me it was in my best interest.  I was admitted and placed on the neuroscience floor.  That was my first clue it was something to do with my brain.

That first day they did an x-ray, CT-Scan and finally a MRI.  The MRI wasn't done until almost midnight.  I was scheduled to have one STAT and there was an opening, so off I went. 

The following morning a doctor I had seen in the ER came to visit me.  I'm not certain of the ranks of doctors, but she was a student, but also already had the prefix of Doctor.  She told me they were now looking for diseases that were typical onset to women, people my age and people with my symptoms.

The following morning, my nurse friend came to visit before work.  I asked her again what she thought it was.  She said that it still could be some kind of infection in my eye, but then asked if I really wanted to know the truth.  She thought MS.  I immmediatly dismissed it as something that couldn't happen to me.  She then went on to explain that I was the right age, gender and had symptoms typical of MS.  She was using the EXACT words as the doctor, but also included a suspcision.

So a little while later my medical team came to visit.  The woman doc who had seen me earlier was there, as another.  I got the feeling both women were "in charge" in this teaching group, although maybe just in my case and they rotated turns.  Then, there was an older white-haired doctor, who I imagine was the full-fledged doctor in charge of this group.  Finally, there were 5 or 6 male doctors, that stood in the back, didn't say anything, and just had books or laptaps and observed. 

The head female spoke to me to see how I was doing.  All my answers were the same.  I then asked her, "Do I have MS?"

She didn't say no.  I don't remember what she said, but she didn't say no.  She talked about the MRI results not being there yet, and a neurologist having to read them, and it being too soon to tell anything, but she didn't say no.

At this point, I was crying.  I feel completely ridiculous and really bad for how uncomfortable I was making those guys, but I was crying.  There was nothing she could say that would make me feel better.  And the silly part is, at the time, I had NO IDEA what MS was.  I really didn't know anything about it.

They left.  Another friend came to visit and I filled her in between tears.  And then they came back.  But not all of them.  Just the two lead women and the white-haired doctor.  I knew that was a bad sign.  They didn't even have to open their mouths. 

She told me my MRI had come back up and they looked at it.  She still could not confirm a diagnosis of MS, but it looked like it.  A neurologist would come talk to me about it.

The rest of that day is a bit of a blur.  I know I told people, either on the phone or through text message.  Everytime I said or typed the words, "they think I have MS" I would start a new round of crying.  I tried to google all I could about it, but between the crying and loss of vision, I had a really hard time reading anything.  I just wanted to cry.  I don't think I've ever cried so much in one day.

They did another MRI that day, this time with dye.  By time those results came back, everyone knew I had MS.  I felt silly for being so ridiculous about it, but it didn't matter.  All I knew about MS was that it wasn't good. 

This was 7 months ago.  I still can't say it's good, but its not a death sentence.  I have good days, and I have bad days.  Fortunately, for me, at this time, the bad days are only psychologically bad.  My physical symptoms are pretty mild, if they are there at all. 

There's a few recurring thoughts I have, some good and upbeat and some practical.  I want to share those:
1. I will not die from MS.  I will die with MS.
2. When my life ends, I'm pretty confident it will be because I've taken it.  I don't want to take it today, but when that day comes, it will be at my own doing.
3. I'm trying to make sure I don't let my friends worry about me.  In doing so, I'm pushing them away and that makes me lonely.
4. I can do anything I want to do.  Except be an organ donor.