Where are you living right now – the past, future or present?

I think I spend 1/3 of my time living in the past, 1/3 living in the present and 1/3 in the future.  One would think that's well rounded, but its probably actually very unhealthy.

I live in the past when I think of all things I used to be able to do and can't do anymore.  I wish I could and sometimes imagine and try, but fail miserably.

I live in the present, but not thinking about the future.  I can't imagine or see a future.  That's also not good.

I live in the future when I think about all the things that can wrong with my life.  It's not a hopeful future, its a scary future and one I dread.

So, none of those times are particularly effective.  I need to find an effective spin to put on it.

I want to remember the good times of the past, but not be sad they are not here now.  I need to remember my past made me who I am today.  I need to focus on the current moment.  I need to accept what I can and cannot do, and be comfortable with it.  I need to see a positive future.  Lots of great things can happen.  Heck, they could find a cure for MS.  That would be the most amazing future, but even without, I can do great things.  I can live a happy life.

What advice would you give to yourself three years ago?

Live.  Really live. Take advantage of EVERYTHING.  Yes, the kids at work might make you crazy, and your family may drive you nuts, but it's so worth it.

Life is good.  You are on the verge of greatness.  Enjoy this time.  Take every advantage you can.  Good things can happen if you seek them out.

When you start to feel weird - numb as the case may be - get it looked it right away.  I know you'd rather ignore it and hope it goes away, but it won't.   The quicker you can catch it, the better off you'll be.

You have some really great friends.  Cherish them.  Take advantage of their wonderfulness.  They are the kind of folks who will be with you forever.  They love you and you love them.

Know that you are about to face a few challenges.  It's not going to be easy, but you can totally do it.  Keep your mind in the right place and anything is possible.

Hurricane Sandy

Geez.  Maybe it really is the end of times.  Last year at this time, we had a snowstorm which caused major havoc for a week or more.  It was unprecedented early for a snowstorm in these parts.

This year, we have Hurricane Sandy.  Unprecedented late and not at all normal for these parts.

First, the school's announced they would be closed.  That was fine.  In that case, we run a snow day program and I was gearing up for that.

Now, my Y has decided they were going to close.  That's definitely not normal, but means a day off for me.  Unfortunately that day off is also the anniversary of mom's death.  Hopefully we'll loose power, and I can just sleep through it.  That would be ideal!

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.

I almost forgot to look at Postsecret this week.

I go to therapy on Thursdays.  It would be pretty cool if this was from my therapist, but I'm pretty sure it doesn't apply.  Still fun to imagine.

This was the most shared secret this week, and its beautiful.

Preparing for Sandy

Last year, at this time, it was the October snowstorm.  Power was out for a week.  There wasn't a ton of snow, but all the leaves were still on the trees, and the snow made trees fall EVERYWHERE.

This year, we have Hurricane Sandy heading our way.  It's not suppose to be as bad at the snowstorm last year, but still a likelihood to loose power and what not.

In preparation, I've filled my gas tank, and am baking all sorts of goodies to eat if I can't actually cook.  I also postponed a shipment of medication in case the power goes out. There's no point in getting it if I don't have power to refrigerate it.  I have tonight's dose, and then they'll call me back on Tuesday to schedule the rest.

It's also been a year since my mom died.  The technical anniversary is Monday.  I miss her, a lot.  I guess I always will.

This past week, I went to one of those MS presentations.  This one had my doctor as the guest speaker though.  That was wicked cool.  My doctor really is amazing.  I'm really glad she's mine.

baby shower good times!

Baby Shower

I've been baking, wrapping, planning all day long for my best friend's surprise baby shower tomorrow!  I can't wait....its going to be ridiculously fun.

New favorite show - Emily Owens MD

The thing about being an adult, that no one tells you growing up, is that you don't feel like an adult.  All your stupid insecurities and anxieties are still there, only you feel even more stupid and insecure about being stupid and insecure because you're not suppose to be stupid and insecure anymore.  You're suppose to have the answers.  You are suppose to know.  But we don't always know.  And those answers, they're not always easy to come by.

Well, you know what.  I'm done feeling stupid and insecure about feeling stupid and insecure.

The truth is, I think part of being an adult is that you stop waiting for yourself to change and you start accept who you are.  Come on, it's gotta get better than this, right?

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.

Today was the coolest day ever!

Zombie Run

I'm volunteering at a Zombie run this weekend.  It's a traditional 5K run, except there are obstacles you have to go through and Zombies chase you.  If you finish the run with at least one flag, you can boast that you survived the Zombie apocalypse.  It's pretty cool.  I'm going to be a zombie!

World Mental Health Day

 

It's Thursday.  Thursday means I'm visiting my therapist.

I often think about what we will talk about Wednesday night.  Sometimes, I forgot I'm going and then stress about what to think of.  I usually have an idea, but often try to avoid talking about that as long as I can.

I enjoy hearing about her.  She's starting her own private practice, and I find it fascinating.  Eventually, when it gets big, I imagine I won't see her anymore.  That thought kind of makes me sad, but for now, I'm not worried about it.  With some luck, I won't need to see her anymore by then anyway.

Tomorrow is my next visit.  I haven't been feeling physically well lately, MS related and most likely a kidney infection.  I'm choosing not to treat it.  That's totally a mental health issue and while I'd be content to bring it up, I know I really should.

I don't know what she is going to say.  I'm quite positive she will want me to call my doctor.  I know she won't understand why I don't want to, and if I try to explain it, I'm going to end up crying.  I realize therapy is a great place to cry and yadda yadda yadda, but I HATE crying in there.   She doesn't judge or anything if I do, just offers some Kleenex, but still, I HATE it.  It feels awkward and ridiculous.

I'm going to have to find the courage to bring this up tomorrow - and then hope for the best. I can't even predict where or how the conversation will go.

pumpkin picking field trip!

What a day - it was long, but wonderful.

And what full day program is not complete without a 5 year old running out of the locker room into the hallway stark naked because she forgot her bathing suit in the gym.

Best part of today - hearing a parent who usually complains about EVERYTHING that she loved the staff at her son's site and how well her son was doing in school because of the staff.  Excellent.

My favorite season

Fall is my favorite season.  I love the brisk, cool, nights.  I love wearing hoodies, sweat pants and sweaters.  It feels so refreshing.

I only begrudge fall because it precedes winter.  That's my least favorite season.

But for now, having the window open, and having it be chilly inside.  I LOVE it.  I will try very hard to not turn on my heat until November 1st.  For now, I'm cozy in my hoodie, sweat pants and blanket wrapped around me.  I have my fuzzy socks on and I'm happy as a clam.

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.

whoa is me

I'm in a great deal of pain, and I'm pretty certain its my kidneys.  I feel like there must be something wrong with that whole system and thus its caused a kidney infection.  I'm cranky and really don't want to deal with it.

tomorrow is going to be another LONG day

1.  I hate management sometimes, and I really hate stupid employees who exist to make my job harder.  The thing is, I can deal with a lack of knowledge or incompetence.  But this person does what I expect when I'm around, then the minute I leave, goes back to their old ways.  That just pisses me off.

2. Square dancing starts one week from tomorrow.  I'm excited!

flu day sucks

This is the second week in a row now that I haven't been able to sleep through flu day.  I can't sleep, yet I feel ridiculously awful.

I've taken some left over pain medication from when I had my wisdom teeth out.  Here's hoping it produces sleep tonight.

The hand...

There is a tradition we used to do at camp.  Each night, its nice for groups to reflect on the day.  At summer camp, we called it a "cabin chat."

On the first night, my favorite activity was the hand introduction.  Each person talked about 5 parts of themselves, all related to fingers.

The thumb - what makes you human.
The pointer finger - what guides you.
The middle finger - what annoys you.
The ring finger - what you are committed to.
The pinky - something random about you.

I was thinking about this tonight - I don't really know why.  My answers always change, often based on the group of people I am with.  I share different things with children, with my staff, with my peers.  It also depends on my life situation.

Today, my thumb - I experience emotions.  Every emotion, and sometimes every possible emotion in an hour time period.  I'm happy, sad, angry, scared, confident, excited and more.  It's all me, and its all very human.

My pointer finger - I struggle with this one lately.  If I was sharing this with a group, I wouldn't have anything right now.  I'm looking for something to guide me.  I need to find something that is worth it these days.

My middle finger - I'm annoyed when I'm misunderstood, or just blatenly ignored.

My ring finger - I'm committed to finding my way again.  I seem to have lost it recently, but I'm going to find it again.

My pinky - I miss my Subaru.

Shots

I usually do my Avonex shot at night, and then take some Nyquil and sleep through the worst of the side effects.  I'll take it either Friday or Saturday night, depending on my weekend plans.

This weekend I went car shopping Saturday morning.  (I got a Focus, which is not anything that I am happy with, but it was cheap and I'm desperate).

Then my best friend in the world was moving today (Sunday), so I didn't want the flu then.  So I did my shot at noon time on Saturday.  This was the first time I had done it at a time other than bedtime.

It SUCKED.  I felt miserable all day and could not fall asleep for the life of me.  Then, today my back was so sore, I wasn't all that helpful moving.  I didn't even have my subaru to fit lots of stuff in.

“A boss creates fear, a leader confidence. A boss fixes blame, a leader corrects mistakes. A boss knows all, a leader asks questions. A boss makes work drudgery, a leader makes it interesting.”

I've had a hell of a week, namely with the highest sort of management at my job.  Fortunately for me, my supervisor, and her supervisor, agreed with me.

It all boils down to the fact that I had to reprimand his son, who works for me.   I knew that wasn't a good idea to begin with.  And it got all blown up ridiculously.

Now, its over - and not resolved, but over.  I really was kind of wishing I'd get fired over the whole thing.  I'm not one to think, "oh, I'll just sue!" but really, this would have been the best wrongful termination suit ever.

And in the last 24 hours, I've really grown to like this boy with the incredibility annoying father.

I'm a quitter

I quit therapy today.  Well, sort of.

I didn't actually quit as much as just not make an appointment next week.  I'm pretty sure that I'm not going to make a follow up.  My reasons are very valid, but not entirely everything.

I think the whole process is so complicated.  I have MS.  I'm dealing with it.  That should be enough.

My faith in humanity has been shattered.

There is no reason EVER, in any universe, that an 8 year old girl has a rape kit done.

It's the kind of ngiht

I'm sad
I feel like all is hopeless
I just want to cry

To solve all this, I shall go to bed.

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

Woohoo!

I found my missing envelope of money!  Well, technically my assistant found it.  But either way, I didn't have to sell myself on the street corner to replace the $400.

Phew.

September 9, 2012

You're especially easy to please today, dear Sagittarius, but also very willing to do the pleasing. A general trend in your life recently is a larger focus on relationships and the joy you feel when you are with someone one on one. This is a good year for enhancing or attracting a partnership. Later today, you are especially in touch with your own motivations, as well as others. Trust your perception now.

Boundary Breakers

I'm a bit of a blogging fool today.  I guess that's cause work is finally not crazy and I'm enjoying the low key do-nothing day that is not flu day.

Another boundary breaker:

Is there anyone you trust so much that you wouldn't be afraid to have him or her know every single thought you have?

OMG, absolutely not.  I can't even imagine having someone in my life that I could trust that much.  I can't even fathom how anyone can feel like that about anyone else.  I don't even blog, on this anonymous blog, every single thought I have.  I mean, duh, there'd be 500 entries a day, but there's plenty of thoughts that I even censor on here.  Eek.  That's such a scary thought!

Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives; some of the most interesting 40 year olds I know still don't.

What do I want to be when I grow up?

That's easy.  It's always been easy.  Camp.  As soon as I worked out that one could make a professional life through camp, that's what I wanted to do.  I went back to school and got a degree in Camp Management.  Camp is was my life.

Now the possibility of camp, or least what I think of when I think of camp, is slipping away.  I feel that MS has made that all but impossible.

But, just because I can't do camp the way I've always done camp, doesn't mean camp has to be completely eliminated.  I just need to sort out what that means.  I'm pretty sure I can find something to get me excited again.

another day...

Just when I think things are settling down, something happens.  I can't find my petty cash envelope for the month.  This sucks.

Little nothing book

I found my little nothing book tonight.  There were a few things I had to add to it, and I'm pretty impressed with how long it is.

Every good camp director has a little nothing book.  It's filled with inspirational stories, quotes, pictures and general good mood things.  

I started this in 1995.  It's come a long way since then.  There's a lot of stories about Girl Scouts, camp, love, life. 

 I guess it's time to add Multiple Sclerosis to that list.  I'm quite sure there's good quotes I can add.  In the meantime, my favorite story (it's long, but well worth it).

Three Letters From Teddy

By Elizabeth Silance Baynard

Teddy's letter came today, and now that I've read it, I will place it in my cedar chest with the other things that are important to my life. "I wanted you to be the first to know." I smiled as I read the words he had written and my heart swelled with a pride that I had no right to feel. I have not seen Teddy Stallard since he was a student in my fifth grade class, 15 years ago. It was early in my career, and I had only been teaching for two years.  From the first day he stepped into my classroom, I disliked Teddy. Teachers (although everyone knows differently) are not supposed to have favorites in a class, but most especially are they not to show dislike for a child, any child. Nevertheless, every year there are one or two children that one cannot help but become attached to, for teachers are human, and it is human nature to like bright, pretty, intelligent people, whether they are 10 years old or 25. And sometimes, not too often fortunately, there will be one or two students to whom the teacher just can't seem to relate. I had thought myself quite capable of handling my personal feelings along that line until Teddy walked into my life. There wasn't a child I particularly liked that year, but Teddy was most assuredly one I disliked. He was dirty. Not just occasionally, but all the time. His hair hung over his ears, and he actually had to hold it out of his eyes as he wrote his papers in class. (And this was before it was fashionable to do so!). Too, he had a peculiar odor about him which I could never identify. His physical faults were many, and his intellect left a lot to be desired, also. By the end of the first week, I knew he was hopelessly behind the others. Not only was he behind; he was just plain slow! I began to withdraw from him immediately. Any teacher will tell you that it's more of a pleasure to teach a bright child. It is definitely more rewarding for one's ego. But any teacher worth her credentials can channel work to the bright child, keeping him challenged and learning, while she puts her major effort on the slower ones. Any teacher can do this. Most teachers do it, but I didn't, not that year. In fact, I concentrated on my best students and let the others follow along as best they could. Ashamed as I am to admit it, I took perverse pleasure in using my red pen, and each time I came to Teddy's papers, the cross marks (and there were many) were always a little redder than necessary. "Poor work!" I would write with a flourish. While I did not actually ridicule the boy, my attitude was obviously quite apparent to the class; for he quickly became the class "goat," the outcast - the unlovable and the unloved. He knew I didn't like him, but he didn't know why. Nor did I know - then or now - why I felt such an intense dislike for him. All I know is that he was a little boy no one cared about, and I made no effort on his behalf. The days rolled by. We made it through the Fall Festival and the Thanksgiving holidays, and I continued marking happily with my red pen. As the Christmas holidays approached, I knew that Teddy would never catch up in time to be promoted to the sixth grade level. He would be a repeater. To justify myself, I went to his cumulative folder and from time to time looked it over. He had very low grades for the first four years, but not grade failure. How he had made it, I did not know. I closed my mind to the personal remarks. First Grade: Teddy shows promise by work and attitude, but has a poor home situation. Second Grade: Teddy could do better. Mother terminally ill. He receives little help at home. Third Grade: Teddy is a pleasant boy. Helpful, but too serious. Slow learner. Mother passed away end of the year. Fourth Grade: Very slow, but well behaved. Father shows little or no interest. Well, they passed him four times. But he will certainly repeat fifth grade! Do him good! I said to myself. And then the last day before the Christmas holidays arrived. Our little tree on the reading table sported paper and popcorn chains. Many gifts were heaped underneath waiting for the big moment.  Teachers always get several gifts at Christmas, but mine that year seemed bigger and more elaborate than ever. There was not a student who had not brought me one. Each unwrapping brought squeals of delight, and the proud giver would receive effusive thank-yous. Teddy's gift wasn't the last one I picked up, in fact it was the middle of the pile. Its wrapping was a brown paper bag, and he had colored Christmas trees and red bells all over it. It was stuck together with masking tape. "For Miss Thompson - From Teddy" it read.  The group was completely silent and for the first time I felt conspicuous, embarrassed because they all stood watching me unwrap that gift. As I removed the last bit of masking tape, two items fell to my desk: a gaudy rhinestone bracelet with several stones missing and a small bottle of dime store cologne - half empty. I could hear the snickers and whispers, and I wasn't sure I could look at Teddy. "Isn't it lovely?" I said, placing the bracelet on my wrist. "Teddy, would you help me fasten it?" He smiled shyly as he fixed the clasp, and I held my wrist for all of them to admire. There were a few hesitant oohs and ahhs, but as I dabbed the cologne behind my ears, all the little girls lined up for a dab behind their ears. I continued to open the gifts until I reached the bottom of the pile. We ate our refreshments and then the bell rang. The children filed out with shouts of "See you next year," and "Merry Christmas!" But Teddy waited at his desk. When they had all left, he walked toward me, clutching his gift and books to his chest. "You smell just like Mom," he said softly. "Her bracelet looks real pretty on you too. I'm glad you liked it."  He left quickly. I locked the door, sat down at my desk and wept, resolving to make up to Teddy what I had deliberately deprived him of - a teacher who cared. I stayed every afternoon with Teddy from the end of the Christmas holiday until the last day of school. Sometimes we worked together. Sometimes he worked alone while I drew up lesson plans or graded papers. Slowly but surely he caught up with the rest of the class. Gradually there was a definite upward curve in his grades. He did not have to repeat the fifth grade. In fact, his final averages were among the highest in the class, and although I knew he would be moving out of state when school was out, I was not worried for him. Teddy had reached a level that would stand him in good stead the following year no matter where he went. He had enjoyed a good measure of success and as we were taught in our teacher training course, SUCCESS BUILDS SUCCESS. I did not hear from Teddy until seven years later when his first letter appeared in my mailbox. Dear Miss Thompson, I just wanted you to be the first to know. I will be graduating second in my class next month. Very truly yours, Teddy Stallard I sent him a card of congratulations and a small package, a pen and pencil gift set. I wondered what he would do after graduation. Four years later, Teddy's second letter came. Dear Miss Thompson, I wanted you to be the first to know. I was just informed I'll be graduating first in my class. The University has not been easy, but I liked it. Very truly yours, Teddy Stallard I sent him a good pair of sterling silver monogrammed cuff links and a card -- "so proud of you, I could burst." And now, today - Teddy's last letter. Dear Miss Thompson, I wanted you to be the first to know. As of today, I am Theodore J. Stallard, M.D. How about that!!!??? I'm going to be married in July, the 22nd to be exact. I wanted to ask you if you would come and sit where Mom would sit if she were here. I will have no family there as Dad died last year. Very Truly yours, Teddy Stallard I am not sure what kind of card one sends to a doctor on completion of medical school and professional boards. Maybe I'll just wait and take a wedding gift, but my congratulations can't wait. Dear Ted, Congratulations! You made it and you did it yourself! In spite of those like me and because of us, the day has finally come for you. God bless you. I'll be at that wedding with bells on! Miss Thompson

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. 

“Our wounds are often the openings into the best and most beautiful part of us.” ― David Richo

I've still been going to therapy.  In many ways, its useful, just in the day to day, week to week stuff.  There's nothing she can say or do to make the bad feelings of MS go away, but I can think of it differently. 

Last week, we were talking about my life and what interests me.  I said my job was everything.  It is.  It's pretty much all I am, and all I identify with.  I feel life would be over if I didn't have it.

She started to brainstorm others things to do, that I could be engaged with.  She wanted ideas of other things to add to my life that would keep me excited - about living - I suppose.  I started to think of some things I have enjoyed previously, but nothing really made me excited.

Then I thought of square dancing.  I loved it when I did it.  I was probably 40 years younger than everyone else, but I had so much fun!  I said it.

I think, at first, she was trying to figure out if I was serious.  Then, when she concluded I was, I could almost see her thinking, "I will not judge my client, I will not just my client, I will not judge my client."

During the whole process, I was thinking she didn't get.  She didn't get the problem in the first place.  Coming up with this list was easier than trying to explain myself.  Except, when I got home, I thought about it. I thought a lot about it.  The thought of doing something else in life made me excited. 

I started to look up square dancing.  I found a club near me - for singles even.  I didn't have to have a partner to join.  I wrote to them.  I'm going to start square dance lessons in October.  I'm looking forward to it!

Oops

I love the new auto injector shot and find it doesn't hurt at all, unless I accidentally shoot myself in the thumb. Then, it hurts like a bitch.

The earth has no grass to fall to, when its having a bad day...

I'm pretty certain there is someone bad MS coming my way. 

My left arm is numb and has been for a couple weeks now.  I'm having some trouble peeing again.  And most importantly, I'm in such a bad mood.  I was thinking it was just me, but its not.  It's something that is really wrong. 

Not all those who wander are lost...

I'm not liking where my thoughts are going lately and I'm trying very hard to not be too consumed by them.  It would be quite easy to write a pathetic entry about how I'm feeling, but I'm trying to focus on something good.  So, I will write about a child that really left an impact on me at camp.

For blogging purposes, I'll call him Tommy.

Tommy was too old for our program.  He was 13, and we advertise that we only go up to 12.  His mom registered late and it was all very last minute, and I didn't notice until he was there.  Once I met him, it was pretty clear Tommy could find right into our program.  In fact, he played like a 6 year old.  He was the size of a 13 year old though, and I had to constantly remind him to be gentle with the little guys.

He reminded me of my brother.  His looks, his behavior, his interests, even the way he walked, was like my brother.  His health form listed a plethora of diagnoses, and my brother was only diagnosed as Asperger's, but none the less, Tommy could have been my brothers twin, except 10 years younger.

The other staff didn't like him much.  In fact, one of them said she was scared of him.  He had angry outbursts.  When he was in trouble, it was pretty common for him to yell, "I hate you.  Leave me alone!"  It didn't make me scared though.  And after he calmed down, he always apologized, on his own, without any prompting.

He had his troubles outside of camp, no doubt.  See, the first day of camp, children bring lunches that are the same as what they would pack for school.  Except your physical activity at camp is so much greater then at school, and children are always hungry the first day.  They make sure their parents know, and they always have much larger lunches and snacks the second day.  Tommy was no exception.  On his second day, I commented to him upon seeing the three lunch boxes his mom packed (labeled morning snack, lunch and afternoon snack), that his mom hooked him up with food today!  His response:

"What, do you work for DSS?" I could tell the sort of home life he had.

Yet, there was something about him.  He did have a huge heart and he was so forgiving.  If kids would tease him, he always forgave them and would play with them later.  He may get angry in the heat of the moment, but always calmed down and forgave anything.  He was never violent at all. 

Tommy is the kind of child camp is made for.  That boy inspires me.

So, tell me, where does the arrow point to, and who invented roses?

It's quite possible that in less than 10 minutes, I lost a $10,000 grant. But, in my defense, I was honest. The grant is only for 6-8th graders and we applied for k-5th grade. I don't know what the grant writer told her, but I'm not gonna lie about it.

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.

7th Annual MS bike run!

Today was the bike run again, and this year, I got someone to ride me :)  The condition was based on weather, but it was beautiful and off we went.  It was my very first time ever on a motorcycle and I had an absolute blast!

I was cramped a bit and my legs hurt from sitting that way, but all in all, it wasn't bad.  I totally could be a biker chick if I wanted.  I think I'd be rather cute at it.



The unfortunate thing is that the MS nurse, my favorite human being ever, wasn't there.  I thought she would be, and I'm a little worried about her.  She hasn't been at the clinic the last few times I've been there either.

So, the actual ride was a little over an hour, but it took us two hours to get to the starting place and then another two home at the end, so really, it was like a 5 hour ride.



The weather held out for most of it.  It started to rain just as we got to the end place.  Then cleared up, and we bailed early to make it home before the real storms.

Right after we took off, another shower came through.  We were soaked.  But that shower quickly passed and riding on the highway dried us off pretty quickly.

About 5 minutes after we got home a huge storm rolled in.  Thunder, lightening, the works.  I was rather shocked we didn't lose power! 

But we made it all safely, and I have successfully checked an item off my bucket list!

Who rocks the house?

Camp is great!  Better than great. 

Camp is my life.  It has been for a very long time.  Recently, I thought an MS diagnosis meant I'd have to find something else to satisfy my life.  I couldn't have been more wrong.

Granted, its a small camp.  I also spend 3 of the hottest hours of the day at the pool.  But, its still going and I feel incredibly healthy!  I don't think I've been this happy in a long time. 

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.

Good visit to the vet!

She's healing nicely.

Life could always be worse.

I could have a lamp shade on my head.

I'm dog sitting again, and this little pooch had some surgery yesterday. Poor thing.

I was too happy driving and too angry to drive home

So, therapy has been a little stagnant the last few weeks.  I've just been content to not talk about the important stuff, and perfectly happy to make "small talk" and what not. 

Today though, I just found the courage to do it, and we talked about quite a few things that were really important.  I feel good just getting them out there, even if its just on the surface.

The Importance of Not Being Too Earnest

So, I'm totally on this Dawson's Creek kick.  I found out it came to Netflix, and I've been hooked ever since.  I'm finally on the last season.  Now, when I first got it, I saw the pilot, the season finale and the episode where Joey and Pacey first kissed.  Then, I started watching them in order. 

Now, I'm finally on the last season.  Clearly, I did not watch this when it was on.  Joey slept with Dawson??  I had no idea that happened.  Geez, the biggest love triangle ever, and I had no idea.  Granted, I was always a Joey/Pacey fan, but still, that was something big that I missed!

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.

beat the heat - in a pool :)

It was a great 4th of July.  I'm far too exhausted for fireworks this evening, but all in all, it was a great day.  I'm dogsitting at the house with a pool, and a couple of friends came over.  We grilled, we swam, got lots of sun.  It was a great day!

I'm slightly sunburned now.  Here's the thing - I often get a little pink when I spend an extended amount of time in a bathing suit.  Mostly, my upper arms and back, where tshirts normally cover.  Anyway, I've noticed this summer, that when I am sunburned, I feel so good.  I mean, the sunburn itself isn't nice, but health wise - I feel better than I have in a long time.

When I'm hot, there are issues, but once I cool down, it's like I don't have MS anymore.  Vision is fine, I'm not dizzy and most especially, my emotional state is excellent.  I don't know if that is normal for MS, but for me it is.

I have a doctors appointment tomorrow.  I'm a little nervous since its the followup from the 3 MRI's.  These are the first ones done since I was diagnosed.  I'll find out if there are more leisons or if they are bigger.  I know that whatever it is, it is, and it doesn't directly relate to what symptoms I have, but I'm still nervous.

I'm also seeing my therapist tomorrow, for the first time in a while.  One week I couldn't go, then she was on vacation, so basically, I've had 3 therapy-free weeks.  I'm not gonna lie.  I kind of liked that.  But tomorrow will be good, especially if I get bad news tomorrow from the neurologist.

dog sitting...again

So, the VP of my Y asked me to dog sit.  It's a little weird, but I figured, why not?

She has a pool.  I've only been here 4 hours, but I've already been swimming 3 times.  Tomorrow I don't have to work, and I plan to swim LOTS. 

Pictures to come :)

Officially a fan

This thing is brilliant and didn't hurt at all!!

Sunny Days at the YMCA

Today was Thursday.  It was the second day of vacation camp and hot as hell.  Basically Satan called, and he’d like his weather back.  I am sweaty, sunburned, filthy, exhausted and happier than I have been in a long time! 

I just feel so productive.  This is my element.  I’m at a camp, running great program for kids.  I’m keeping them safe in the 95 degree weather.  One girl told her mom I was the “sunscreen natzi” and just kept making her put on the sunscreen.  I must have uttered the phrases, “put on more sunscreen before you go outside,” and “drink some more water,” at least a million times today.

Now, the MS and heat thing is a bit of a problem, but I was more proactive about it today than I have been before.  I had my cooling wrap since the wee hours of the day.  I put my vest on by 9am.  We went swimming from 2-4pm, and I jumped in and out 5 times during that time frame. 

I’m happy.  I feel good.  I feel productive.  MS is not going to win…today anyway.

Summer!

Friendly's has a new sundae! You get to take home the dish :)

thoughts of the day

101 Things to Do to Keep Myself Productively Occupied

1. Cafe World
2. Coloring
3. Puzzles
4. Reading sappy books
5. Finally putting away laundry
6. Scrapbooking my sisters wedding
7. Dishes
8. Recipe sorting
9. Finding inspiration stories for training
10. Adding to "Little Nothing Book"
11. Solitaire - with real cards
12. Working Out
13. Organizing Junk Drawer
14. Cleaning closet
15. Shopping for new stuff to put in the cleaned out closet
16. Writing a long blog post
17. Writing letters to old friends
18. Cooking new recipes
19. Cleaning under fridge
20. Cleaning under stove
21. Gardening
22. Hiking
23. Recycling cans
24. Organizing shoes
25. Sing
26. Shower
27. Sing in the shower
28. Nap
29. Clean my car out
30. Vaccuum my car
31. Create games for rainy days
32. Build card houses
33. Monopoly
34. Create an elabore domino setup
35. Knitting
36. Mario 64
37. Organize junk drawer
38. Read sappy books
39. Clean under bed stuff
40. Make mixed CDs
41. Change sheets
42. Socks matching
43. Friendship braclets
44. Sun bathe
45. Make chocolate covered fruit
46. Organize Hand and Foot game
47. Clean windowsills
48. Clean windows
49. Listen to music really loudly
50. Homemade popsicles
51. Library Trip
52. Hair wraps
53. Costume shopping
55. Photo box
56. Organize mail
57. Watch sunset
58. Photograph landscape
59. Make a bucket list
60. Do something from the bucket list
61. Make homemade ice cream
62. Rearrange bedroom
63. Shrinky Dink
64. Write a book
65. Go to a murder mystery dinner/cruise
66. Zumba
67. Organize road trip games file
68. Update my linked in page
69. Catch on up Words with Friends games
70. Catch up on Draw Something games
72. Catch up on Scramble games
73. Have a bank of 2,000 coins in Coin Dozer
74. Catch up on Hanging with Friends games
75. Roast Marshmellows
76. Create 10 new Dutch Auction activities
77. Drive In
79. Make a bird feeder for the backyard
80. Soduku
81. Word Search
82. Origimi
83. Skip numbers on this list to not have to think of as many
84. See how many licks it takes to get to the tootsie roll center of a tootsie pop
85. Create ringtones for people
86. Tag Sale shopping
87. Farmers Market
88. Catch up on Tivo
89. Photoshop old pictures
90. Cigar box purse
91. Read old camping magazines
92. Save articles from MS magazine
93. Go through pen box and throw away ones that don't work
94. Solve Rubix Cube
95. Make taper candles
96. Make God's Eyes
97. Gimp
98. Create journals for gifts
99. Stumble
100. Fancy Sugar cubes
101. Rewrite lyrics to pop songs for camp skits

Striving for...

What do you strive for most in your life: accomplishment, security, love, power, excitement, knowledge, or something else?

Something else - at least for now.  I am striving to like myself.  I hate to admit it, but I think I just have horrible self esteem right now.  In the end, that is what it all boils down to.

At work, I don't do as well as I could, because I'm afraid to fail.  It's kind of like a self fulfilling prophecy. 

With MS, I feel like I am less of a person now.

With friends, I don't want to tell them anything about what I really feel, because I am afraid of how they will really see me.

With relationships, I feel like they are destined to fail since I am so miserable.  I don't even want to think about one, since I know I'll ruin it.

In therapy, I'm scared about what she'll think of me.  So I avoid all the things that make it known how much I really hate me.

Sights of Summer

My backyard is lit up with hundreds of lightening bugs. I've tried to take a picture, but that was an epic fail.

More boundary breakers

If 100 people your age were chosen at random, how many do you think you’d find leading a more satisfying life than yours?

That's quite a difficult question, given my recent state of mind.  Usually, at camp, I say something along the lines of 25 people lead a more satisfying life than me.  I always figured I had it pretty well, although there was always someone better off than me.  That was ok with me though, as I always had something to work toward.

Today though, I feel rather different.  I feel that so many things are wrong with my life and the amount of stuff to fix is rather overwhelming.  Today, I would say 60 people have a more satisfying life than me. 

Now, I need to fix that.  I need to get over wallowing in self pity and work on it.  First, finances.  I need to deal with stuff that I haven't wanted to deal with.  That will be a great start.

Second, work.  I need to decide if I really want to do this, and if so, give it my all.  No more of this half ass bullshit.

Life outside of work - I need to get myself involved in something that's extracurricular or what not.  I should find a cause that I want to volunteer with or something.  I'll find it.  That will be good to keep me busy, perhaps meet new people and generally contribute to society.

inspiration

I've been thinking a lot about the various diversity, connection, team building activities we have done at camp.  I also feel in a bit of a blog rut - and only really talk about therapy.  So, I figure, answering some of these will be something else. 

These questions came from an activity we did during group's last night.  These questions were asked, in no particular order, and each member could answer.  "Pass" was always an option, but generally, folks got into it. 

What is more difficult for you, looking into someones eyes when you are telling someone how you feel, or looking into someones eyes when they are telling you how they feel?

I think that's its much more difficult looking into someones eyes when you are telling them how you feel, whether its good or bad.  If you are telling them something good, like what a difference they have made to you, its almost awkward to be looking in their eyes.  If you are telling them something not-so-good, then its just horrible to see the look or hurt or sadness in their eyes.

It's not so bad looking into their eyes when they are telling you something.  That's almost easy.  If good, you feel you have a soul connection.  If negative, their eyes might be a little softer than their words and take some of the sting out it.

Secrets are too shameful, painful, terrifying, overwhelming, disintegrating and unbearable to speak out loud in case it makes it real, in case we have to relive them all over again.

I've been talking with my therapist quite a lot about the things I don't want to share with her.

The plus side of this is that I'm able to be pretty straight up with her about the fact that I'm not sharing everything.

And I'm not really lying. I'm just leaving out pertinent information. I'll eventually get to it though. Or at least so far I have.

She was concerned about why I feel the need to leave stuff out. There's 16 million reasons really. I didn't have one for her though.

She asked if I felt I needed to entertain her.

No. I mean I don't want to be a boring client, but I'm not worried about making her day. I do worry about being tiresome or hard headed though. If its something we already talked about and I'm still feeling or doing it again, then I feel like I'm an idiot and she's gonna get bored of the same thing over and over.

On My Own

Without a doubt, the theme song of my life, and most assuredly, the best song from a musical ever.

I don't go to therapy to find out if I'm a freak

I don't think I'm really strong enough for this therapy thing.

I wondered if that was how forgiveness budded, not with the fanfare of epiphany, but with pain gathering its things, packing up, and slipping away unannounced in the middle of the night.

This is why I don’t read.  I start a book, and I cannot put it down until its done, no matter what else I have to do.  I started reading this book at 5pm.  I read until it was done at 10:30.

I got some books from the library.  I browse the catalog online, and then they ship them from surrounding libraries and can just pick them up  from the desk.  When I’m there, I always check out the displays they have.  Frequently, the best books I have found are not ones I heard about from someone, but a book that caught my eye on display.

Today was no excecption.  There was a book I spotted and in looking at the description, it didn’t seem like the kind of book I would read.  It set it down and kept looking.

I kept going back to it though.  Multiple times.  Finally, I just took it with the thought that if I started reading it and hated it, I’d just read one of the other books I had.  Or, I had so many, maybe I’d never get to it and just return it.

As I was checking out, the woman remarked upon this particular book.  “The Kite Runner.  Oh, this is such a good book.  You’ll be sobbing.”

Huh?  True, I was attempting to get a crying book.  I haven’t cried in forever, but felt like I needed to cry since the hospital.  No matter what, I haven’t been able to.  Even the saddest movies I know (PS I Love You, My Sister’s Keeper) have been unable to make me shed a tear.  I feel – hard I guess.  I just wanted to cry.

So of course, I get home and crack open this book.  I was hooked instantly.  But, it wasn’t a crying book for me – the story.

Randomly though, there would be a line or a paragraph, that would spark something.  It didn’t have anything to do with the story, but everything to do with my life. It started in the very first chapter.

That was a long time ago, but it’s wrong what they say about the past, I’ve learned about you can bury it.  Because the past claw’s its way out.

It kept happening, over and over.  Little things, would set me off.  Don’t get me wrong – it felt so good to finally cry, but it was also this moment of clarity.  I had to figure out what it was that was making me cry.  I feel like I was forced to pay attention, not just to cry, but to figure out what I was crying about.  I think therapy made me think I need to do that…

My favorite postsecrets

I find postsecret like a big connection.  There's always some secrets I relate to.  Others I think are super intriguing and they make me want to learn more about humanity.  Some are funny, scary, taboo, or just downright sad.  No matter what they are, I love reading them every Sunday.

MS Walk 2012

·         I liked the MS Walk in Worcester better.  There was better energy – I reckon a lot of that was because it was out in public. 

·         There was hardly any volunteers there….that made it kind of sad.

·         I had lots of really nice people come out for the walk.  That made me feel loved.

·         I didn’t get ridiculous and upset this year – which was very good.  Good mental health space anyway.

·         MS Walk after coming off IV steroids kind of sucks.  It’s a Nyquil kind of night.

I’ve also had some observations through a variety of sources.

The general consensus from people I know in real life:

·         I handle MS very well.  My positive attitude is going to get me through it .

·         The doctors and nurses at the hospital said this to me multiple times.

·         The friends of friends who did my walk today said this.

·         My coworkers have said this.

·         My landlady said this.

·         People who know me well, or not so well as the case may be, are worried that I handle it well on the outside, but inside I’m a wreck.

Therein lies the truth.  Someone said this to my best friend – who knows me, albeit not that well.  When my friend and I were talking about it, I agreed.  So did my friend.  It’s the whole crux of it.  I feel fake.  Not just sometimes, but all the time.  I don’t want to be fake.  But I don’t want to be miserable on the outside as well.  I want to be good on the inside.  That’s the key difference.

It bothers me that not everyone just sees the me I want them to see.  But it makes me feel like there’s hope and I’m not so alone as well.