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Tuesday, May 31, 2011


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.

Monday, May 30, 2011


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.


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.

Sunday, May 29, 2011


Oh 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."

Saturday, May 28, 2011

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 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.

Friday, May 27, 2011

I fight like a girl...

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

Thursday, May 26, 2011

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? 

Wednesday, May 25, 2011


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.

Monday, May 23, 2011

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.

Sunday, May 22, 2011

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.