broken computer, new girlfriend and jealousy?

First, my computer is acting up.  The mouse does not click correctly.  When you push it, it stays registered that it's clicked until you click it like 6 more times.  Except, it's not exactly 6, its just random.  So doing ANYTHING is super annoying because the mouse keeps selecting all and what not.

Onto the good news.  I had this mother of a former camper and staff member set up with this woman she knew.  I had very low hopes for this.

We went on a date Saturday and really hit it off.  I figured it was going to be awkward and horrible, and while I guess it started a little that way, it was brilliant.  I really enjoyed her and her company and her conversation.  It was good.

I ended up telling her I had MS.  I sort of had to.  She was talking about hanging together Sunday, but Sunday is my flu day.  If I just said, "no, I'll have the flu" that would sound like the lamest excuse ever.  So, I told her.  She didn't say much, but we still made plans for Monday.  That was a good sign.

On Monday, she brought up MS.  She said she didn't know much about it, and wanted to know the prognosis for me.  That's kind of scary...when someone you potentially like asks something like that.  I was honest, but probably more hopeful about life then I sometimes feel.  She was okay with it.

What I didn't mention, and probably should, I keep my house pretty cold.  I mean, I've always had it colder than normal, but now especially cold.  I just feel sick when its warmer than 62.  So, one thing leads to another and I end up sleeping with her, which was lovely, but she also commented she was chilly.  I felt bad, and next time she comes over, I'll have to remember to turn the heat up, literally.  But, if its too warm, I reckon I'd be too hot to do anything.

Besides that, I'm happy.  It's weird, and I'm totally not the sort of girl to fall like this.  It's very weird.  But, I'm happy.  The smiling all the time kind of happy.

What have I gotten myself into?

I have a ... date Saturday!   I don't date.  I fall for friends, coworkers, professors, etc, but I don't just date someone.  And yet, Saturday, I am.  I'm so not cut out for this.  I imagine awkward conversations, weird feelings and potential heartbreak.  Oi Vei.

I think I'd rather have MS than date someone.

Tai Chi

I've signed up to be part of a MS study.  It's taking 3 weeks of Tai Chi and seeing how to that helps people with MS and improving balance.

I did a study a few years ago at the same place.  I've lost feeling in the bottoms of my feet since then.  The first time, I could feel the smallest bristles, and this time, it was like the 4th and 5th ones I felt.  That's sad.

Tai Chi though, is going to be very cool!

When everything is quiet, who do you think about?

I think about MS.  I think about what it's done to me and how much I dislike it.

I think about work.  I think about sites that I have a problem at, or sites that need some help.  I think about the staff struggling at the moment, or the kids that are struggling.  I think about everything I have to do on my to-do list.

I wonder if I'm destined to be lonely.

I think about my mom.  I think about the regrets I have, my last times with her, my favorite times I've spent with her, the things she has taught me.

I think about my dad.  I think about his health failing him and how I'm very scared I will one day have to think of him like my mom.

I think about my brother and how responsible and compassionate he has grown to be.  He amazes me frequently.

I think about my sister and her pregnancy.  I worry about her and the baby and I'm sad to be so far away from her during the time.

I think about finances and what bills are coming up. I try to figure out how I'm going to pay them all.

I think about personal things in my life that I need to get done.  Generally, it's cleaning, sending mail, getting an oil change, putting laundry away, taking clothes to Goodwill.

I think about therapy.  I think about the topics that I need to address and I figure out how to bring them up.  I think about how often I think about death in that particular day, week or month.  Then I think about how pessimistic I'm being, and try to put a positive spin on it.

Then I think that I hate quiet time and stop it.  That might be turning on the TV, radio, going online, something, because when everything is quiet, my mind always goes a bad way.

Multiple Sclerosis - about as cool as a honeymoon handjob.

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Flu day

Ugh....I feel very yucky today.  I think MS is just making me nuts.   I'm having trouble seeing today...even the words on my TV are hard to make out.  Looking around just gives me a headache.  As soon as I keep my eyes forward, I'm good, but I'm super sensitive to any movement.

I think this is a combination of flu day, post steroids, and MS.  Blech blech blech.

An exceptionally well timed letter

I received this in the mail today from a former camper, staff member and the daughter of a friend of mine.  I've known her since she was 10 years old.  We met at camp, but then I became good friends of her family and so I have known her in and out of camp.

As a camper, she was "Suzy Camper."  She was all about camp.  As a staff member, she was kind, compassionate, and then had one major foul up, in which I had to fire her.  She knew it was inevitable and the whole thing sucked, but she bounced back and has since gone to work there successfully.  She's had a rough time of things as she has entered into adulthood, but she had a good head on her shoulders, and I am eager to see what becomes of her.

Anyway, I got this letter from her today.  She's in job corps, which is kind of part job training, but also for kids who've had some trouble in their lives.  It's a little boot camp-ish, but very good for her.

"Dear Heidi,

My teacher gave us an assignment to write a letter to someone in our lives that we see as a leader.  I thought of you immediately because you were the person who taught me leadership in and out of camp.

In my opinion, you were the best director I saw in my time at camp.  You set the rules, made sure everyone was doing what they were suppose to do and ensured every one's safety, but still managed to be someone we could come to, if we had a problem, someone who could always make me laugh.  From the very first memory I have of you, when you took me to Friendly's for my birthday, I have known that there is someone that cares for me outside of my family.

Whenever I fought with my mom, or needed something she couldn't provide, be it a ride to dance or someone to talk to, you have been there for me.  Mom and I frequently wonder where we would be without you.  You have been so many things in my life, camp director, babysitter, mentor and friend.

Most of all, you are are someone I can look up to, someone who inspires me.  You are one of the best, most wonderful people I have ever met, and seeing you struggling with MS is hard for everyone, but you accept the cards that you were dealt, and you haven't lost your smile.  You are someone I admire more than anyone else, and I am so grateful for everything you have done for me.  I would not be where I am without your support and love.

Love you,"

*Name omitted to protect her identity *

I am slowly going crazy, 1-2-3-4-5; crazy slowing going am I, 5-4-3-2-1.

I wonder if I'm going nuts right now.  I'm pretty sure its the steroids, but I am on such an emotional roller coaster.  EVERYTHING is getting under my skin.  I'm ridiculously happy one moment, and blubbering like an idiot the next.

I'm feeling sick to my stomach.  I'm seeing things that aren't really there.  I can't focus.  It's ridiculous.

And it all boils down to the fact that I hate Multiple Sclerosis.  I try to down play it.  When folks at work ask how I am, or why I'm at work when I was just in the hospital yesterday, I shrug it off.  I say it's just MS, not a big deal.

I texted my therapist tonight to let her know I might be late for my appointment tomorrow - because infusion took FOREVER today.  Then, before she answered, I was able to move the infusion appointment earlier so it wouldn't matter.  She responded and said she was sorry to hear I wasn't feeling well.

I couldn't even answer that.  My gut instinct was to just shrug it off, but with her, I really shouldn't.  If anyone gets the real feelings I am having, it should be her.  Although, I know I don't even want to share that, but certainly not via text.  It can wait until tomorrow.

I just hate MS.  I think I'd rather have about any other disease, or even better - none at all.  But a disease that predictable, that would be so nice.  One that I would know what to expect, and when - that would be so nice.

Instead, I have this disease that things seem to hit me out of no where.  It effects EVERYTHING, and I even wonder if its making my mood this bad.  I've never felt so discouraged before.  My thinking is slow, my reactions are slow.  My mood is so blessed down, and that I don't even know if its the MS or just the dealing with MS that makes it so.  Either way, MS is the problem, and I really need to find a way to deal with it before it consumes me.

You always pass failure on your way to success. – Mickey Rooney

I had a doctor say to me today that I was an Avonex failure.  I don't like being called a failure, even if it has absolutely nothing to do with me.  I also don't necessarily agree with him.  I was sick - really sick a few weeks ago.  The fact that a relapse has started is probably from that.

Maybe he is right (which PS, his name is Dr. House), but I'd rather wait for Dr. Dayaw to say it.  If Dr. Dayaw thinks it, then I'll assume its right.  If not, then I'll keep on the Avonex.

Which of course, is a long winded way of saying that I'm admitted in the hospital.  I'm having a flare.  I have a really old roommate, who is scared to go home after what happened to her.  I don't actually know what happened to her, but she's kind of cute.  It's sad, but the nurses and doctors are super nice to her.

And now I'm getting a dose of steroids, and then I get to go home.  I'm not scared of going home.  I'm looking forward to going home.  I have to come back for 3 more days, as an outpatient, to finish the round, but that's ok.  It's SOOOOO much better than actually being here.

sick sick sick

I've been ridiculously sick, since Thanksgiving.  It's going on 11 days now, although to be fair, I was only horrible for like 6 days.  Still, 6 days is a long time and day 11 is about over, and I'm still not feeling 100% well yet.

I went to the doctor last Monday.  She said it was a viral flu and I'd just have to let it run its course.  I had a flipping flu shot, so that makes me extra cranky about it.

While all this is going on, I can feel the MS buzzing around, ready to pounce.  I'm hoping and praying that I don't end up with a big flare.  For now, its just some numbness in my hands.  There's some potential pooping problems going on, but I hope that is because of an increase in vitamin C and not MS.  So far, all related to peeing is going fine.

For now, I shall go to bed, before 7pm in order to get up for 7am.  Geez, I hate MS and illness.

A day at the zoo

Having MS is kind of kind of a like a day at the zoo.

I hate the zoo.  I find it boring and I'm much rather be at an amusement park.

You get tired of seeing the same things.  You get hot from just walking around.  You have to pretend to be interested in what you are looking at, but really it's just boring.  As you're going around, you are desperately looking for something fun, but there's just more of the same old stuff.

Every once in a while, something good comes along, but its quickly over and then you're back to the same old same old.

circle of people

When I worked at a camp that had an inclusion program, we had a lot of ways to train the staff in working with children with disabilities.  All staff needed to know general things about working with all children.  The specific counselors working with the children with disabilities needed to know more, but everyone needed to know about inclusion and how to include everyone.

To teach this, we used the people chart.  There were three circles.  On the inside circle, there was a person's family.  The middle circle was comprised of friends.  The outside circle was professional people.  They were people that were involved with a child's life, but paid to do so.

The family circle looked the same for both typically developing children and those with disabilities.  It was the other two that showed a drastic difference.  Children with disabilities had few friends, but lots of professional folks.  The opposite was true for the typical kids.

My circle:

The professional circle has gotten much larger since getting MS.  I guess that is to be expected.  The family circle is the same as its always been, except since my mom's passing.  The friend circle is relatively the same. I'm not one of who has millions of friends, but I have close ones that matter to me.

The professional circle starts to bother me.  Before MS, I rarely saw a doctor.  I wouldn't even include them in my circle I saw them so infrequently.  Now, I see my neurologist every 4 months, a therapist weekly and the others as I need to.

Life is interesting

I saw that someone found by blog by searching for the phrase "gf diagnosed with ms and freaked out."

That was very weird.  Mostly, people come here from MS bloggers, direct links or some random search phrase that got them here.  Postsecret posts and To Kill and Mockingbird quotes have generated lots of traffic.  Even, a picture I put up with some quote made it to Pininterest.

But its pretty random that I have a hit that stems from actual worry about MS.  This, for some reason, really impacted me.  It makes me think of that video on the National MS Society website I saw a long time ago.

This search term made me think of that video - and spoiler alert - the girl who was diagnosed 7 days ago.  I remember when that was me.  I felt like I didn't even know which way was up.  I was scared and confused and no idea what was happening to me.  7 days into diagnosis I didn't even have my eyesight back yet.  It was a horrible time!

Now, today, it's not so bad.  It annoys the crap out of me and gets in the way, but I'm not so scared.  It's not as horrible as I feared it was going to be.  I can live with MS.

If you can find a path without obstacles, it probably doesn't lead anywhere.

I don't know what the hell is wrong with me.

That's not true, actually, I do.  I have MS.  That's what is wrong with me.  I'm not positive if that is what is going on, but it probably is.

The thing is, my thinking, my logic is so skewed about it right now.  My lower back hurts.  A lot.  It's probably my kidneys and its probably cause I'm having issues peeing again.  That's all a guess, but a fairly educated one.

My left arm is numb too.  Both of these things are a pretty good sign a relapse is in my future.  I'm flipping pissed.  I can't deal with that.  I don't want to deal with that.  I'm on this stupid medication to avoid this from happening.

THIS SHOULD NOT BE HAPPENING.  Hell, I'm doing a job that isn't my love, because of stupid MS.  It's not that hard.  I want to be doing the harder job.  I can't do an easy job and have this MS crap going on.

And I forgot to bring my happy pills while I'm dog sitting, so I haven't taken them in the last 3 days.  I don't know how long it takes to experience withdrawal, but it may be a contributing factor to my mood.

Here's my thoughts.  Let's say its a kidney infection again.  I'm ignoring it.  That will lead to kidney failure.  I'll ignore that too.  Eventually, I'd die.  It's like the easy way to end my life.  I'm ok with that.  In fact, I'd welcome it.

And thinking that scares the bejesus out of me.  Not enough to do anything about it, but enough.  I suppose this is something I should discuss in therapy this week, but I'm very confident my therapist will disagree with me.

Thoughts for the night

If you want to feel rich, count all the great things you have that money can't buy

friends - really great friends, the kind that I know I can call on when I really need something.  The kind that can pull me up when I need it, and that I know will call on me when they need it.  The ones from long ago, the current ones, and the ones that I know are forever.

family - even if they can make me crazy, they are there.  In all sorts of weather, and they love me, unconditionally

knowledge - not just the book kind that came out of school, but the real life experience I have had.  The lessons I have learned, even if they came about the hard way, make me who I am.

children - there's been amazing children I've met in my life.  They've left a footprint on my soul and I really appreciate what they've done for me.

camp - as a child, this place defined me.  All I wanted to be when I grew up was my counselors.  This place molded me, and taught me about life.

love - it's cheesy, but those I've loved are worth it.  'Tis better to have loved and lost, then to never have loved at all - or something like that.

inspiration - those thoughts, ideas, things that keep me going.  It's those things I can turn to when I'm having a tough time.

health - eh, I can't count that anymore

In the book of life, the answers arn't in the back. -Charlie Brown

I've had MS almost 2 years now.  It'll be my two year anniversary on the one year anniversary of my mom's death.  That's gonna be kinda weird.  But, as far as MS is concerned, I've learned a lot.  I enjoy talking to folks who are newly diagnosed, or close to a diagnosis.

Since I got MS, I have learned that sometimes, I just have to suck it up and move along.  I can't expect to always feel good, but if I can keep my head on right, I feel better.

That's not always easy.  I catch myself feeling sorry for myself far more often than I would like to.  I catch myself using MS as an excuse when I'm tired or lazy.

But, things are getting better.  I would say I have more good days than bad days now.  I would say the biggest challenge for me with MS is my mental health, but I'm learning how to cope.  The physical symptoms are easier to deal with then the mental ones, but I'm learning.

I attribute a lot of that to my therapist.  She's pretty cool. 

Her name is Danielle - Danielle D'amato -  if anyone is looking for a great therapist in Massachusetts.  There's been quite a few times when I see something, and I can only see it in this tunnel vision mindset.  She calls it a black or white thinking, but then she brings up another side of it, or another way of looking at it, and I leave feeling shocked.  Except, she's right and its all in the way I am approaching something.  And all of a sudden things feel so much clearer and much more logical.

She has many locations, mine in Western MA and then another near where I used to live.  Then, she's opening her own place someplace completely different.  It's kind of impressive.  I personally would be terrified of all that, but it seems to suit her.

She's young.  I figure kind of idealistic.  The way I used to be - her about therapy, me about camping.  I miss that thought process.  When I thought anything was possible.  Then this whole MS thing hit, and all that idealism was shattered.  I feel like maybe, its coming back.  Perhaps with a bit more realism, but it's totally coming back.


Some days I feel broken.  Completely broken in spirit, mind and body.  When I tell her about it though, whatever it was seems ridiculous - and it really was.  I started thinking she should "fix" me, but really, it's about me changing my thinking.  She's not really fixing me, just adjusting how I process things. 

summer is ending

My camp is over.  We ran for three weeks, had about 22 campers a week, and it was the most amazing experience ever.  After the first week, I felt very good.  I felt like I could do anything and life was amazing.  MS didn't matter, because I was doing what I love and loving what I do.

Now that three weeks are over, I'm exhausted.  I feel like MS is ruling my life and I can't do anything I want to do.  I'm exhausted, overwhelmed, and generally annoyed with everything.  I need to get a new and better mindset, cause this is very unproductive.

Song Pop

I'm addicted to a new smartphone game.  Song Pop.  Funny thing is, I SUCK at it, but I love it.  And I'm surprisingly good at the Animated Songs category.

I'm also experiencing a bit of a weird MS thing (at least I think so).  I keep shaking.  It mostly happens when I am sitting still or laying down.  But my whole arm or torso will shake uncontrollably.  It's weird.  I'm guessing its an MS thing, cause what else could it be, but I don't really know.  Its on my list to ask my doctor about next time I see her.

Mostly good news!

The sad truth is that I don't know how to read most of these.  But my doctor said that I had no new lesions on the brain or cervical MRI's.  Any some of them have gotten smaller or disappeared.  That's great news!

I did have lesions on the thoracic mri, but that had never been done before, so she doesn't know how they compare to a year ago.  I guess my recent symptoms have been things that would be in that area though, so she wasn't really surprised.

She need mention that she was going to do a blood test to see if I had a different kind of MS.  I only know about the 4 main types, and didn't even know there was something else.  I don't remember what she called it, so I can't look it up.  I also didn't know there was a blood test for any kind of MS.  I figure though, its results come back pointing to something else, she'll tell me.

Roid Rage

Finally home.  Exhausted.  Cranky.

Things I know:
* I hate MS
* I hate cathedars
* I hate steriods
* I'm unhappy about this MS walk tomorrow, although I was very happy about it before this most recent hospital stay.
* I need to think my thoughts in order and blog properly, but that's not happening tonight.