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.