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Friday, December 30, 2011

near tragedy

So, I canceled my neurologist's appointment last month, becuase my new insurance company said I needed a referral from my PCP. My new PCP would not see me until she got my records from my old PCP, so I canceled that neuro appointment and scheduled a new one for this month.

They called yesterday to remind me that I had the appointment. I called the PCP again, who still hasn't gotten the records. I was hopeful and called the insurance company to see if they could waive the need for that referral.

Happily, I found out that if she was in-network, I didn't need one anymore. Great news! But, the story doesn't end there. They looked her up and said she was not in network. GASP!

I asked before I took this job, as her being covered by my new insurance was part of my decision in taking the job. When I called her office, they said she was covered by this insurance.

I call back the insurance company. She looks again and says, nope, not one of our doctors. However, Dr. Bell, who is in the same office as her is one of them. That makes NO SENSE to me. I'm babbling about how illogical I think that is while she looks up Dr. Dayaw by address and finds her.

She says, "Oh, I've got her, she's covered, but her name is not Dr. Dayaw." Now, I realize, this woman has many names, but I am 100% confident that Dr. Dayaw is the name she should be known by with insurance companies.

Her full name is Dr. Maria Pilar Elisa Tejada Dayaw. Her business cards have random initials in there instead of the actual names, and the people who know her well from the MS support group call her Lisa, but basically, her name to me is Dr. Dayaw.

The insurance company says her name is Dr. Pilar. Dr. Maria Pilar. That's wrong, and I know that. They read her whole name though, and its definitly her. That, and there is no Dr. Pilar in her office.

Thankfully, all is set and I can see her next week. Phew.

Thursday, December 29, 2011

emotions

Something came up tonight that has come up recently as well. My cousin said to me, "you are always in conrol, your emotions are always stable."

This past summer, I was critized for the same thing. When I was mad or aggitated, no one knew it. I was always in control of it and just dealt with the situation.

But, that was work. I am meant to be like that at work. I'm the boss. The boss should not be hot headed. At least, I don't think she should.

When my cousin said it though, I really thought about it. My own family thinks that about me. The problem is, I don't think that about me.

I feel like I'm a mess inside. Everything in my head is so jumbled, and I feel like, metaphorically, I don't know which way is up. I'm just trying to get through each day, and yet, to others I come off as stable. Interesting.

Morgan!

She's the greatest.

Wednesday, December 28, 2011

I'm a doggy mommy....temporarily

My friend is in Australia. I get her black lab, Morgan. Morgan is wonderful. I adore her. When I was first diagnosed and discharged from the hospital my friend gave me Morgan for a couple weeks. She felt (rightfully) that I needed her to keep me motivated to go on living.

I'm grateful she did. And now she's in Australia for a few weeks and I get Morgan the whole time :)

Monday, December 26, 2011

Christmas has come and gone

The holidays were good. Very weird without my mother, but otherwise good.

The first week of January, I have an appointment with my doctor. The new insurances requires me to get referrals, but the new PCP won't see me without medical records from the previous...and she hasn't gotten them yet. It's never ending, and I have to make a bunch of phone calls this week.

Its vacation week for the school kids. That means my week is going to be crazy, but a good kind of crazy. I'll be busy. Tomorrow is ice skating. I haven't been to this place yet, so I'm excited to see what it's like.

As I'm writing, I am realizing I have nothing important to say.

Monday, December 19, 2011

the holidays

I tend to write more when things aren't going so well. I think I've always been like that...as a teeny bopper with diaries. If I go back and look at them now, my life looks horrible. But combine all the drama of teen angst, along with only writing once every four months, that's what you get.

So, this is a happy post. Nothing is wrong post. I've been feeling pretty good. I got my tooth pulled last week. That kinda sucked, but it hurt so much. I reckon that was the reason for all the other illness going on. As soon as the tooth came out, everything was better.

I wasn't coughing anymore, nothing hurt, it was brillant.

So now, we are onto the holidays. I've got a friend's I am going to go to. Life will be pretty good :)

Saturday, December 10, 2011

another fever

I'm not going to freak out if anything happens but its really getting annoying. Whatever is going on needs to get better, like now.

Tuesday, December 6, 2011

Heat

So, we all know heat makes MS worse. Last night I learned that also applied to having a fever.

That's logical, although I didn't think of it when I went to the ER. I had a low grade fever. I went to sleep. I woke up and couldn't see. Everything was blurry. I was ridiculously scared.

Turns out I didn't need to be. It was just the heat from the fever.

I feel very stupid really. I know I am meant to wait 24 hours of symptoms. I know much better..I shouldn't have gotten so scared.

On another note, the ER doc had an eye chart app for his phone. It made me think doctors must have the coolest apps.

Sunday, December 4, 2011

First try at speech to text blogging

Well, I finally found an app that lets me speak and not type. It's a lovely.

And from this post, I figured out how to add punctuation.

So all in all it's been a little crazy lately. I just haven't been feeling well. Am but hopefully it's going to get better.

So the text to speech thing is not working as nicely as I've hoped but it's better than trying to type this whole thing.

Anyway I been sick lately. Like regular sick not MS sick. But I'm just so scared that something is coming my way.

Here's hoping I can just get through the holidays with nothing bad happening.

Tuesday, November 29, 2011

Resolved

My new job came with new insurance.  They said they didn't cover Avonex.  I had to use Rebief.  I don't have anything against this other drug, I'm just used to Avonex now.

Today, I was on the phone with the new specialty pharmacy working on the order.  He said, "Your case is on stage 6.  You've done most of the work already."

Actually, I did very little work.  I called my doctor's office.  That's about it.  They are BRILLANT.  I'm fairly certain it was entirely them that made it happen so quickly!  Dr. Dayaw is brillant and the staff there are so efficient.

I had an appointment to see her in December at the MS Center, but canceled it today.  The new insurance company also requires me to get a referral to see her, but the new primary will not accept me as a patient until they get my medical records from my previous doctor, and I imagine that will take longer than getting to her appointment.  I canceled it today with hopes that someone else can still get into that appointment.  And I resheduled for January, so it's all good.

Sunday, November 27, 2011

Thanksgiving, birthdays

Ugh.  I'm sick.  Just regular sick, not MS sick, but I feel yucky.

Thanksgiving was good.  I went to a friend's house and we had a good time.  Her fiance was there, with his children, and all of her children. 

My birthday was also good.  We went to Golden Coral for dinner.  They now have a chocolate fountain, which is delicious.  I made chocolate covered strawberries, marshmellows, pineapple, and apples.  While eating them, I was geting chocoalte everywhere.  My friend said, Heidi, you are covered in chocolate.

I replied, without even looking at her: "Its my birthday and I have MS."

It was a pretty funny moment :)

Mrs. Clause was there to celebrate Black Friday I imagine.  She, and a bunch of waitors, sang Happy Birthday.  That's always fun.

And then Saturday hit, and I'm sick.  Blah.  I've spent most of the day sleeping.

Wednesday, November 23, 2011

so far so good

Well, I figured I would definitly have a flare after everything that has happened in the last few weeks.  Moving.  New job.  Death of my mother.  Surely all those things put together would bring it on.

It hasn't, or at least not yet.  I don't feel particularly well, but I just feel sick.  Not MS sick, just plain old regular sick.  It's not even that bad.  So, knock on wood, all is going well.

Saturday, November 12, 2011

Another shot...missed

I missed my shot the night my mom died.  I kept meaning to do it, and then I was 5 days late doing it....so I just skipped that week.  I did it the next week, and had major side effects.

Now, tonight I took it out the fridge earlier and I can't freaken find it now that its time to take it.  I'm super annoyed.  I remember taking it out, and then, have no idea.  I don't want to take another out, as I'm already a little screwed when it comes to getting more.

I had 4 doses, which would at least give me time to get it organized.

Ahhh!  I have a fairly small apartment.  Where the heck is it?

Monday, November 7, 2011

The death of a mother is the first sorrow wept without her.

In the midst of moving and starting a new job, my mom passed away.  My wonderful, happy, amazing mother.  She drove me crazy, but she always cared 100%.  I was her only child, and she cherished me.  I don't think I ever realized how much I cherished her until she was gone.  It's been 9 days now.  There have been 9 days of my life that she has not been on this planet. 

I miss her terribly.  I would give anything just to be able to talk to her one more time.  To hug her one more time.  To listen to her ramble one more time.  To deal with her pack-rat tendancies one more time. 

I love you mom....I hope you know how much. 


http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

Sunday, October 16, 2011

lots of changes

It's been a while since I've posted.  Posting makes it feel real.  I'm not so excited that it is real.

I've quit my job and am moving back to Western MA.  I'm quitting camping.  It feels like it's just too much.  The heat, the hours, the stress.  I feel like a bit of a failure and I have no idea what I'm going to do come next summer.  Camping is my life.  It just won't be, at least for a while.

Sunday, October 9, 2011

Absolutely awesome apples

Went apple picking. I've been feeling ok but DANG it was hot. It's meant to be fall, but it was in the 80s.

Tuesday, September 20, 2011

How could anyone? By Libby Roderick

How could anyone ever tell you, you were anything less than beautiful?
How could anyone ever tell you, you were less than whole?
How could anyone fail to notice, that your loving is a miracle,
How deeply you're connected to my soul

Thursday, September 15, 2011

another item for the list

I missed the event tonight.  The board meeting went too late.  When I got there, the room was full and it would have been very awkard to walk in.  I couldn't do it.

This is just another reason why I can't live the life I want and have this stupid disease.  Tonight was just pure irony that both were so closely connected.

Wednesday, September 14, 2011

Funny how that happens

I had my support group tonight. There was a woman there who could have been me in 10 years if my life didn't happen the way it did. She refused to take any DMDs, didn't trust her neurologist, and wasn't completely certain she had MS. Her rational was that they tested her for so many things and finally settled on MS.

My thinking is that they ruled out other possibilities to figure out what it was.

But had I not moved out here, went to this MS center, met Kay and Dr. Dayaw, I totally could have turned into her. That's scary.

Granted, I hate my stupid shot, but I know I'm doing something to make my life better. I'm not fighting treatment or burying my head in the sand. I hope she figures that out too. It's scary and horrible, but the alternative is worse.

Sunday, September 11, 2011

Week o' fun

This will be an informative MS week for me. I have the support group Wednesday and the newly diagnosed workshop Thursday.

Friday, September 9, 2011

New phone

So, I've finally done it and gotten an iPhone. I found the blogger app and it's quite possible I will blog more :). For now, here's some turkeys hanging around my camp.

Hating people is like burning down your house to kill a rat.

Every year, my doctor runs a workshop for people that are newly diagnosed with MS.  I saw some posts for the previous ones, and I was pretty excited to hear she is running one this year.  I RSVPed and everything and was very excited to go. 
https://secure2.convio.net/msaa/site/Calendar/300774020?JServSessionIdr004=occczzhbm2.app214a&view=Detail&id=147702

This week, I've found out we have our first board meeting after the summer that night.  That SUCKS.   I'm trying to work out who to call (the number just goes to an RSVP voice mail) to find out ifI can show up a little late.  The program is 2 hours long, and I reckon I can be there only 15 minutes late...maybe a half hour.

It says though, that space is extremely limited.  If there is that much demand for it, I don't want to take the spot for someone who can be there the whole time.  That's a little messed up.

Friday, September 2, 2011

hi ho hi ho, it's off to camp I go

I work at camp, and so it should be no big deal....but I'm going to a camp I used to work at, that I love tomorrow for their Labor Day family camp.  I'm really looking forward to seeing some old friends and enjoying the outdoors!

Thursday, September 1, 2011

another doctor visit

Today was my doctor's appointment.  I don't know what I expected to happen, but I left feeling horrible.  Nothing was meant to happen, or should have happened, and still, I just felt like crying.

I supose it was a combination of two things.

1.  The MS nurse wasn't there, and I was really looking foward to seeing her.  She was out sick today.  That made me a little bummed.

2. She asked me about depressing and feeling sad and what not.  She asked me what was causing it - MS or the meds or what not.  I have no freaking idea.  I just know that I don't feel like me anymore.  I started to tell her, and could feel myself wanting to cry, so I just kind of stopped where I was.  Not that I want her to do anything about it - I don't want to take any more meds that necessary.  I just left feeling like crap I guess.

Wednesday, August 31, 2011

Irene..you've sure messed with me

I'm so happy to have power, tv and internet back in my life.  I have to admit, it was nice to be without these things, as all I did was sleep.  Pretty much from when the sun went down.  It was very nice to catch up on sleep, but now I'm happy to catch up on facebook, blogs, twitter, news....all those happy things.

I did loose 2 doses of Avonex in the power failure.  That SUCKS, but good news is that Avonex will replace them.  There was 3 in the box, but one will still be fine for me to take this weekend, so it's just two. 

I've missed blogging, but thankfully, I've had little to blog about.  I feel well, except for this disc in the back thing.  I have an appointment with my doc and nurse tomorrow at the MS center.  I'm super excited to go there and tell them things are good.

Tuesday, August 23, 2011

forgotten letters

So, I forgot to write yesterday's letter, and then there is today...so its like a 2 for 1 special.

Dear Someone I wish I could meet,
Future Soul Mate  That's it.  I want to meet you, and I want to love you.


Dear Someone I don't talk to as often as I'd like,
I'm not sure who you are...I'm pretty tired all the time and I don't feel much like talking.  I find myself telling everyone I am fine, and yet I'm not, so the conversations never go honestly.  But I hate being a downer...hense this blog.  I can say what I want and feel and not feel guilty.

Monday, August 22, 2011

It's not in my head....the pain is real

The MRI came back today and I have lumbar degenerative disc disease.  Well, at least that's what my online chart says.  She called it something that sounded much less bad, but I can't remember what all the words were.  Basically, there is a disc out of place.

So, it's real.  They've referred me to a "pain doctor."  Like seriously, that's what he is.  I feel like that makes me sound like a druggie seeking pills.  Apparently though, he is the right kind of doctor.  He may try to fix it using steriod shots.  I'm not sure about that.  This all started when I was on IV steriods.

The more I think about it - the more done I am ready to be with freaken doctors.  It's ridiculous!  None of this happened before I got MS and started this doctor malarky. 

Sunday, August 21, 2011

30 letters in 30 days - day 8

Before my letter...my right arm keeps going numb today.  It's annoying and makes me wonder if its MS...puhhumph.

Now, onto today's letter.

Dear Favorite Internet Friend,

I used to have a lot of you, and now I don't really have any.  There's one girl, from Washington State that recently reconnected with me.  It was 10 years ago that we were friends, and to be honest, I can't say that we were even close.

My best friend irl was good friends (internet friends) with a couple from New York.  Well, this girl was internet friends with the couple, specifically, the girl.  So, that's how I knew her.

What I remember about her - she was always super nice.  She was pretty down to earth, and she called it like she saw it.  She recently reconnected me with me, through facebook and text.  Thanks facebook, for sharing my cell number.

She's still super nice.  I told her about my MS, she told me about how her and her love (from way back when I knew her), were splitting down.  She's on her way into entering single motherhood.  I wish her well.  She seems to be taking it stride, and enjoying life.  I want to learn from her and feel the same way.

ugh, Avonex

So, I was doing well with my avonex...barely had any side effects.  Then I didn't take it the week I was in so much pain....and resumed the folowing week. This is now the 2nd week...and ugh.  It gives me wicked side effects, even with medication.  I took Nyquil and still woke up in the middle of the night feverish.

Saturday, August 20, 2011

30 letters in 30 days - day 7

Dear Ex,

This is probably to hardest letter to write to date.  I'm over you - mostly.  Actually, mostly I am over you because I try to think about you as little as possible.  When I do think about you, I feel sad that things didn't work out, and so I try to think about it as little as possible.

Friday, August 19, 2011

30 letters in 30 days - day 6

Dear Stranger,

It's rather weird that I don't know who you are or why I'm writing you a letter.  I don't know how old you are, or your gender, or where you live, or if you are married, where you work or if you work...I know nothing about you.  I guess that's the good thing about this letter.  It doesn't matter who you are, I can just tell you something about my life. 

In many ways, I think it's easier to talk to a stranger.  If they are a stranger, there is no past, and therefore quite potentially, no future.  You can tell them anything, as you are not worried about loosing them in your life, or saying something that will have last reprocusions.

So, dear stranger, to you, I vent my frustrations with my job.  It's camp.  I love camp.  Camp is my life and has been since I was 8 years old.  My background is resident camp.  This is a fairly new job, first summer.  It's also day camp.

I don't think I like day camp very much.  I find a lot of things annoying about day camp, and while I want to completely excel at my job - I'm just not sure I love it.  I like it enough I guess, but I don't know if I will ever feel that I love it. That worries me greatly.

Thursday, August 18, 2011

30 letters in 30 days - day 5

Dear Dreams,

I wonder if I am meant to write to real dreams, like what happens at night when you are sleeping or my dreams...like my wishes, hopes, etc...

First, real dreams...they don't happen in summer.  I think I'm far too sleepy to remember them actually.  What I do remember is that when my alarm went off at 5am yesterday, I thought, "my landlord said I could have all the pet fish I wanted, so it must be Saturday."  That was incredibly logical at the time and I was sure I was correct.  Unfortunately, it was Wednesday, and I had to get up.  Fortunately, I realized this before I turned off the alarm and went back to sleep.

Now, dreams in the hopeful sense.  I used to dream of a lot of things.  Now, I don't know what I dream for anymore.  I guess it's pretty simple.  I want to find a job I LOVE.  One that makes very happy and that I really look forward to going to work daily.  I'm positive it will be camp.  I'm not positive if its this camp or not....time will tell for that one.

I dream of finding a partner in life.  One that I can share my ups and my downs with and that I can share hers.  Someone who gets me, and someone that I get. 

I dream of finding a cure for multiple sclerosis.  That would be a-freaking-mazing.  I'm not sure about how possible, but very very good.

I dream that I can make the world a better place.  I hope to help someone the way I have been helped. 

Wednesday, August 17, 2011

30 letters in 30 days - day 4

Dear Mom,

In many ways, I hope that I've grown up to be just like you, and in other ways, I'm terrified that I've grown up to be just like you.

As a child, I remember how giving of yourself you always seemed to be.  You would dress up in crazy costumes and pass out trinkets, be it flags when you were Betsy Ross, or candy candles as Mrs. Clause, there was always something.  I can't remember a single holiday that you didn't have a costume for.  As a teenager, it embarassed the bejesus out of me.  As an adult, I appreciate it so much more.  It wasn't even about me - it was about making someone else's day.  I love that about you, and I hope I do the same things for others that you always did.

I'm also scared of being like you.   As you, and I, got older, you were sick - all the time.  But hardly really sick...I think you craved the attention and I think other parts of your life got so overwhelming that being sick was a way to deal with those things.  I'm scared the same will be true for me, if it's not already.  I pray I will have the strength to deal with the real issues in my life and not use my MS as an excuse for living. 

Tuesday, August 16, 2011

doctor update

I still have this stupid back pain.  I wish I knew what it was.  The CT Scan shows no kidney stones.  It does show gall stones, but the kind of pain I have does not match gall stone pain.  Where does that get me?

No one seems to know.  My PCP didn't know and questioned if it was neurological.  The urologist said it wasn't urological and probably neurological.  My next step was to call my neuro.

I called Friday.  She wasn't in.  I explained to the receptionist (the one who is BRILLANT at getting radiology appointments scheduled) what was going on, that the other doctors thought it was neuro and that the primary doc was scheduling an MRI over the weekend.  We left the conversation saying that I would call back Monday when I knew the results of that MRI.

Well, the primary's office is not nearly as brillant as the neuro's office at scheduling those radiology things.  It didn't get done and so I had no MRI over the weekend.  I didn't call the neuro Monday, since I had no results to share with her and I kinda felt like either it wasn't neuro, or if it was, there was nothing she could do about it anyway.

Monday afternoon Becky calls me.  She said Dr. Dayaw wanted to see me tomorrow.  I explained that I hadn't had the MRI done and had no results to share.  She put me on hold while she went to ask the doctor.  She came back and said, "nope, she wants to see you first thing in the morning."

"Am I dying?" was my question.  Why on earth does she want to see me first thing in the morning.  I read lots of posts online from people who have so much trouble seeing their neurologist. So why on earth is mine calling me and wanting to see me so quickly.

She said no, thankfully.  But nonetheless, the Dr. Dayaw wanted to see me the next morning.  "I have an 8:00 available," she says.

"No, I can't do 8:00.  At 8:00 I have 700 children arriving."

"Ok, I have 3:00 available."

"No, at 3:00 I have 700 children leaving."

"How about 11:00?"

"11 works just fine.  I'll be there."

So, I get there at 10:45.  The receptionist puts me in the room, but says that the doctor is running behind, so I may have to wait a little while.  I'm patient and that's perfecly fine with me.  About 30 seconds pass and I the doctor comes in.  I am surprised, as it's still not even 11:00. 

She wants to know what's going on, and I explain.  She checked out where the pain is, which incidently is located at where I believe is my kidney (which explains the urologist).  She tells me that it's not neuro pain.  Neuro pain is more generalized and not so specific. 

Clearly, she is cranky.  I'm not positive if she was cranky with me, or with the other doctors for saying they thought it was neuro.  I think it was a little of both.  Either way, the appointment ended with her telling me that it wasn't neuro and that puts me right back where I started.

She did refer me to another doctor - a neuro urologist.  I have NO FREAKEN clue what that specialty means.  I figure it must mean she is prett smart.  She must also be good, if this doctor recommends her.  I called to schedule an appointment and the next available appointment isn't until November.  November.  Good gravy train.  I didn't make the appointment. 

First, if I am in this pain from now until November, I reckon its possible I will go crazy.  Second, I did see a urologist - even if it wasn't a neuro urologist.  He cleared me, and in the process did some crazy tests.  I'm not really a big fan of being subject to those crazy tests again just so some other doctor can come up with the same conclusion.  It's not urological.

Except it feels like it is, and maybe I will just schedule that appointment after all.

30 letters in 30 days - day 3

Dear Sibling,

I love you.  I was ridiculously happy the day you were born.  I remember as a child, wishing on a star for a sibling.  My mom laughed and said, "fat chance."  I thought she was right, and I was incredibly sad.  All I wanted in this world was a baby sister.

And then, you came along.  I was amazed.  I was so happy and I couldn't wait for the moment you were born.  I was only 11 years old, but I felt very grown up.  Dad called me at school to tell me the moment you were born.  I was in music class.  The phone rang and then the teacher told me to go to the office.  I was a little worried. 

When I walked in the door, everyone in there was looking at me.  I felt very conspicuous.  The secretary caled me over to her desk and told me I had a phone call.  I said, "hello."  Your dad responded.

He just said, "hang on," and then I could hear the phone rattling.  The next sound I heard was crying.  Your beautiful, wonderful crying.  I screamed, probably louder than necessary considering I was in the school's office.  It was the most amazing sound ever.  It was close to the end of the school day, but not close enough for me.  I wanted to get to the hospital immediately to see you.

Now, you are all grown up.  I still think of you as a baby, and yet you are married.  You are only 22 years old, and yet so responsible.  I'm so proud of how smart you are and how you have life together.  You inspire me.

I love you!

Dear Second Sibling,
You were as amazing as the first.  I was so excited to find out I was going to have a second sibling.  Even more excited to find out that this time it was going to be a little boy.

Even as a little boy, it was very clear that you were special.  I don't mean special in a bad way.  You were amazing.  You were so loving, forgiving, and good natured.  You were a little slower than other children, but your love more than made up for that.

As a teenager, I learned that you had Asperger's Syndrome.  That made a lot of sense and seemed to fit you.  It made me love you even more.  I know that life can be challenging for you, and I often wish I could solve all your problems myself.  I want to make you world just a little bit better.

As an adult, you still are the most loving person I know.  You love unconditionally and give fully of yourself.  I want to be like you in so many ways.  I learn so much from you.  I love you dearly.  I hope you get all you want in this world, you deserve it!

Monday, August 15, 2011

30 letters in 30 days - day 2

Dear Crush.

You don't exist right now.  Which is weird, because I almost always have a crush.  I haven't had any serious relationships in recent years, but there's always a crush.  Usually it's a teacher, or some other professional in my life.  Ok, always it's a teacher.  I have a thing for teachers.  My own, or others, it doesn't matter, but when I hear someone is a teacher, that does it for me.  Some people are into eyes, or legs, or types of cars that are driven, me...its teachers.

So, not even a crush right now....I didn't even realize it until I saw that day 2's letter was to a crush.  I started to think about it and realized I didn't have one.  This letter shall then turn into a letter for my next crush.

I miss having you around in my life.  I miss that giddy little feeling I get when I see my crush.  I'm not looking for a serious relationship...I just want that excitement back in life. 

Where will I find you again?  I'll keep an eye out...I'm sure I'll catch you somewhere.

Sunday, August 14, 2011

30 letters in 30 days

I found this website with 30 letters to write in 30 days...I've been looking for some sort of inspiration, something to write about besides MS, and this seems like the perfect starting place.  I don't know if I'll really be able to write one letter a day, but I can try :) 

Dear Best Friend,

I love you....I've always loved you.  You can be crazy, emotional, quick-to-fly-off-the-handle, and yet I love having you in my life.  I learn from you every day.  I admire your sense of adventure.  I love that you can things I would never think of...like move across the country on a whim with no plan in mind.

I love that you care so much about me.  I love that you want me to be happy and healthy.  I know you worry, and I try really hard to not make you worry so much.

I know you always speak your mind...sometimes it makes me crazy...I just wish you'd keep your thoughts to yourself...but I know you do what's best.  When our mutual friends thought I had MS, they shared it with each other, but never with me.  You were the one who shared that crucial bit of information.  I, of course, did not believe you, but you were willing to break the bad news.  I appreciate that.

Thank you for being in my life.  Please don't leave again....I need you around!

Saturday, August 13, 2011

thoughts to live by

Tonight I stumbledupon this:
  1. You never know how strong you really are until being strong is the only choice you have.
  2. Sometimes good things fall apart so better things can fall together.
  3. You cannot change what you refuse to confront.
  4. Nobody is perfect, and nobody deserves to be perfect.  Nobody has it easy.  You never know what people are going through.  Every one of us has issues.  So don’t belittle yourself or anyone else.  Everybody is fighting their own unique war.
  5. Crying doesn’t indicate that you’re weak.  Since birth, it has always been a sign that you’re alive and full of potential.
  6. No matter how many mistakes you make or how slow you progress, you are still way ahead of everyone who isn’t trying.  (Read Unstoppable.)
  7. Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.
  8. Grudges are a waste of perfect happiness.  Let it go.
  9. Making one person smile can change the world.  Maybe not the whole world, but their world.  Start small.  Start now.
  10. Sometimes you need to distance yourself to see things clearly.
  11. Never let success get to your head, and never let failure get to your heart.
  12. You have to fight through some bad days to earn the best days of your life.
  13. Life is 10% what happens to you and 90% how you react to it.
  14. You can learn great things from your mistakes when you aren’t busy denying them.
  15. Give up worrying about what others think of you.  What they think isn’t important.  What is important is how you feel about yourself.
  16. When you stop chasing the wrong things you give the right things a chance to catch you.
  17. When other people treat you poorly, keep being you.  Don’t ever let someone else’s bitterness change the person you are.
  18. You have to accept that some things will never be yours, and learn to appreciate the things that are only yours.
  19. Sometimes it’s easy to feel like you’re the only one in the world who’s struggling, who’s frustrated, or unsatisfied, or barely getting by.  But that feeling is a lie.  And if you just hold on, someone will find you and help make it better.  Because we all need a little help sometimes – someone to help us hear the music in our world.  To remind us that it won’t always be this way.  That someone is out there right now.
  20. Don’t be afraid to move out of your comfort zone.  Some of your best life experiences and opportunities will transpire only after you dare to lose.
  21. Sometimes we accidentally allow small problems to escalate and dominate our lives.  If we get overcharged a few cents, it is irritating, but don’t let it ruin your day.  There will always be small issues that irritate us; the secret is to be able to give them the miniscule level of importance they deserve.
  22. Giving up doesn’t always mean you’re weak, sometimes it means you are strong enough and smart enough to let go.  (Read The Dip.)
  23. Ask yourself whether each of your relationships drags you down or lifts you up.  Surrounding yourself with positive, loving people is half the battle of living a happy, successful life.
  24. Spend more time with those who make you smile and less time with those who you feel pressured to impress.
  25. There are few joys in life that equal a good conversation, a good read, a good walk, a good hug, a good smile, or a good friend.
  26. Don’t dwell on the past or worry about the future for too long.  Right now is life.  Live it.
  27. No matter how cautiously you choose your words, someone will always twist them around and misinterpret what you say.  So just say what you need to say.
  28. In order to be creative, we must lose our fear of being wrong.
  29. Not getting what you want is sometimes a wonderful stroke of good luck.
  30. To be great does not mean you have to dominate others.  It means you have to dominate your own potential.
  31. If you are passionate about something, pursue it, no matter what anyone else thinks.  That’s how dreams are achieved.
  32. If you keep doing what you’re doing, you’ll keep getting what you’re getting.
  33. Forgiveness is one of the primary keys to happiness.
  34. The best revenge is happiness, because nothing drives your adversaries more insane than seeing you smile.
  35. Stay positive when negativity surrounds you.  Smile when others frown.  It’s an easy way to make a difference.
  36. If a person wants to be a part of your life, they will make an obvious effort to do so. Don’t bother reserving a space in your heart for people who do not make an effort to stay.
  37. Don’t regret intimate relationships that don’t work out.  Because they will only help you find the right partner for you, and better appreciate them for everything they do and everything they are.
  38. What lies before us and behind us are tiny matters when compared to what lies within us.
  39. The real world doesn’t reward perfectionists.  It rewards people who get things done.  And the only way to get things done is to be imperfect 99% of the time.
  40. Never lie – not even a white lie!  When you steer away from the truth, you steer away from your soul.  Be honest, be real and tell the truth.  This awareness forces you to make better choices and be a stronger person.
  41. Feelings, good and bad, always come and go.
  42. Don’t get caught up in wasted potential from years past.  Potential is all we ever have.
  43. We are not alone.  No matter how bizarre or embarrassed or pathetic we feel about our own situation, there will be others out there experiencing the same emotions.  When you hear yourself say “I am all alone,” it is your mind trying to sell you a lie so you will continue to feel sorry for yourself.
  44. It is okay to be angry.  It is never okay to be cruel.
  45. Don’t pray when it rains if you don’t pray when the sun shines.
  46. Mistakes teach you important lessons.  Every time you make one, you’re one step closer to your goal.  The only mistake that can truly hurt you is choosing to do nothing simply because you’re too scared to make a mistake.
  47. Money is a renewable resource.  If you lose some money, don’t sweat it.  You can always make more.  However, if you spend valuable time stressing over money, or lost opportunity, you’ll never get that time back.  Time is more valuable than money – time is the greatest constituent of life.
  48. Never let people know that they got to you.  Ignore them.  Hold your head up high and pretend all their negative remarks don’t even phase you, and someday they actually won’t.
  49. There is nothing to hold you back except you.  And there is only one question to ask yourself: “What would you do if you were not afraid?”  Think about it.
  50. Life is way more enjoyable when you stop trying to be cool and simply focus on being yourself.
  51. It’s often hard to tell just how close you are to success.
  52. When you spend time worrying, you’re simply using your imagination to create things you don’t want.
  53. No matter how it turns out, it always ends up just the way it should be.  Either you succeed or you learn something. Win-Win.
  54. You must see things how they are instead of how you hoped, wished, or expected them to be.
  55. Even when you feel like you have nothing, someone else likely has far less.  Find them and help them.  You’ll see why.
  56. Laughter is the best medicine for stress.  Laugh at yourself often.  Find the humor in whatever situation you’re in.
  57. If you want to feel rich, just count all the great things you have that money can’t buy.
  58. Forgiving yourself is far more important than getting others to forgive you.
  59. If you awake every morning with the thought that something wonderful will happen in your life today, and you pay close attention, you’ll often find that you’re right.
  60. You can press forward long after you can’t.  It’s just a matter of wanting it bad enough.
  61. It’s not about getting a chance, it’s about taking a chance.  You’ll rarely be 100% sure it will work.  But you can always be 100% sure doing nothing won’t work.  Sometimes you just have to go for it!
  62. If it were easy everyone would do it.  This is why get rich quick schemes will never be true.  If it was so quick and easy then everyone would be millionaires.  Accomplishing great things is hard work, but well worth it.
  63. Notice and cherish life’s surprises.  Just because it’s not what you were expecting, doesn’t mean it’s not everything you’ve been waiting for.
  64. Be vulnerable.  Allow yourself to feel, to be open and authentic.  Tear down any emotional brick walls you have built around you and feel every exquisite emotion, both good and bad.  This is real life.  This is how you welcome new opportunities.
  65. You must create and look for opportunities.  Opportunities rarely ever come knocking on the door of someone who’s not seeking them.  You have to create and seek opportunities for yourself.  You have to take the initiative to get the ball rolling and the doors opening.
  66. If it’s out of your control, why fret about it?  Concentrating on things you can control is how you make good things happen.
  67. Saying “no” to right people gives you the time and resources required to say “yes” to right opportunities.  (Read The 7 Habits of Highly Effective People.)
  68. No matter how much progress you make there will always be the people who insist that whatever you’re trying to do is impossible. Or they may incessantly suggest that the idea or dream as a whole is utterly ridiculous because nobody really cares. When you come across these people, don’t try to reason with them. Instead, forget that they exist. They will only waste your time and energy.
  69. If you spend 80% of your time focusing on the problem and only 20% on the solution, what do you think is going to happen?
  70. No matter how badly you think your life may be going, or how messed up you think you are, there is at least one thing you are doing right in your life or you wouldn’t be alive reading this.
  71. A problem is a chance for you to learn.
  72. The greatest struggle is to be something different from what the average man is.
  73. In times of great stress, it’s always wise to keep busy, to plow your anger and frustration into something positive.
  74. One thing is for sure: Regardless of the situation, life goes on.
  75. Everyone wants a perfect ending.  But over the years I’ve learned that some of the best poems don’t rhyme, and many great stories don’t have a clear beginning, middle, or end.  Life is about not knowing, embracing change, and taking a moment and making the best of it without knowing what’s going to happen next.

August in New England

August in New England is my favorite month of the year.  It's still summer, so I get to do all the things I love...admitingly, its nearing the end of camp and that always comes with a feeling of relief.  The nights are cool for perfect sleeping, but the days are still warm for playing outside.  The sun isn't up quite so early, but there are still long days.  I can wear a hoodie in the morning, and then shed it as soon as it gets warm.  The world is just a better place in August.

I think August is helping me to cope better, at least psychologically.  I'm still in horrible pain, all of the time and that is definitly messing with my head.  I think I'd even be ok with it, if someone knew what it was, but so far nothing.  The urologist and my primary both have decided it must be neuro....which if I didn't have MS, would make me think was just a fancy doctor way of saying, "it's all in your head."

But I do have MS, and I suspose that's a possibilty.  Which the really sucky part is that if it really is neuro, that means there's nothing they can do about it.  That's the part that blows.  At least if it was a kidney stone, or soemthing "real" they could fix it. 

Sunday, August 7, 2011

Easy Exercises to Keep Your Brain in Shape

Easy Exercises to Keep Your Brain in Shape

I think I'm gonna try this. It can't hurt, right?

Rainy Days for the MS bike run

So, today was the MS bike run.  It was also a very wet day with rain constantly....it would start to settle down a bit, and then pour again.  That's not so condusive to motorcycles.  There wasn't a very large turnout.  There was a some, maybe 20, but no where near the number I saw in the video last year.

So, I'm still in my I-hate-the-medical-profession mood and I really hate MS, but I tried to just shake it all off for today.  I didn't want to be there and miserable.  That was fairly successful.  But then it looked like I wasn't going to be able to get a ride.  With not many riders, and those that were singles were happy to be singles in this rain, that meant no ride for me.

My family said that I could try again next year.  I said, "ugh, that means I'm going to have to MS a whole another year."

Um, duh!  I played it off like a joke, but when it first came out of my mouth, I think I was serious.  What the heck was I thinking?  That's definitly ridiculous.

And there was this really cute kid whose mom was in charge of selling tshirts.  Her was going around with a shirt, presumably to try and sell it.  He asked my brother in law if he wanted the shirt.  He told him he could have it for free.  We informed him we thouht he was meant to sell them, not give them away.  He really seemed surprised by that.

Saturday, August 6, 2011

too much

My tonsil hurts again.  That seems so simple and yet that is what set me over the edge into everything else.

It's been too much.  It just feels like there is always something and it causes something else.  I'm so over it.

So, I have the steriods for the relapse.  Pretty basic.  Day 2, my lower back is killing me.  They do a urinalysis and find blood in my urine.  They think its kidney stones.

I go for a CTScan.  There are no kidney stones.  There are however, gallstones.

My PCP is on vacation, so the covering doctor sends me to a urologist.  I was very confused about this, as I didn't think they handled gallbladders, but went.  They don't, but he was worried about the blood in the urine.  He catherized me, which freaked me out ridiculously.  Next week he wants to do something where it sticks a camera up to see the inside of your bladder, which he has filled with water.

He also said the pain could be from this and not the gallstones.  At least that gets somewhere.  But he isn't positive.  He also think my bladder is having trouble because of my MS.  He kept going on and on about how MS can effect bladders and this is a typical thing and yadda yadda yadda.  I'd really wished I just never told him I had MS.

So, and I know my thinking is definitly illogical now, but I feel like I'm done with doctors and this MS crap.  It just seems the more I go and try with deal with something, the more things that they either find, or become wrong.  I just want to quit them all, and go back to my life where I NEVER went to the doctor.  I got a physical every other year and maybe strep throat.  But going to the doctor was not part of my routine. 

The MS bike run is tomorrow.  I was so ridiculously excited for it.  I still am, if I get to ride on a bike.  But I am not excited about seeing people who have these great relationships with the MS center and their doctors and all that jazz.  I don't want anyone to ask me how I am, and either just say that I'm great, or tell them I'm done with all this MS stuff.  I don't want to see my doctor, of whom I normally love.  She's just one of them right now.  I don't want to see that MS nurse, because her I would tell how I feel and she'll try to talk me out of it.  Pretty much, I just need to keep a happy face on and not mention how I feel.

Wednesday, August 3, 2011

another turning point, the fork stuck in the road

So, I don't have kidney stones.  I have gall stones.  I figure at least that's not a pertinent organ.

Monday, August 1, 2011

balance

I can't seem to balance work and health, no matter how hard I try.

I finished the last dose of steriods today.  That's good, right.

Bad news, still have this kidney thing going on.  It's ridiculously painful and driving me nuts.  Thing is, they got me a CTScan tomorrow at 3:20.  That's the WORST possible time in the world.  But I am in so much pain, so do I go, and just look worse at my job, or skip it and stay in agonizing pain longer.

Thursday, July 28, 2011

what exactly is a leison anyway?

Ok, so there's good news:
* the "thing" that happened at the beginning of this summer was definitly not a seizure. 
* the thing in my tonsil is done being treated, so I can start the steriods.

Bad news:
* the mri showed lots of new leisons, and the ones that are the same are much bigger than they were.
* it's a relapse, and I've been on Avonex for 13 weeks, so it should be working fully by now and not be having this relapse.  She is going to evaluate in a few weeks, but I may be changing drugs.

Looking for the funny things:
(I'm trying to stay focused on the positive and look at the funny side of it all.  Steriods give me an awful taste in my mouth.....like pennies.  I said to the nurse about half way through, "can I have some cranberry juice and crackers to get rid of this awful taste?"

She said, "You are one of the ones that can taste it?"
I said, "Yes, can't everyone?"

She said, "No, just some."

My response: "Well then, arn't I just lucky."

Tuesday, July 26, 2011

a brand new day

So, I've still been feeling crappy.  I called the doctor Monday, even though I had an appointment for Tuesday because I felt so awful.  She could see me Monday, so that was good.

The bad news is that there really isn't anything she can do.  I have an abyss in my tonsil, so she doesn't want to do the steriods until that clears up.   She did order an MRI today, which was in a nifty new larger-than-before MRI machine, but that's about it.

I go back Thursday to see what the results said.  I'm really curious if I've gotten any new leisons and where they are if I did.

In other news, I was dreaming last night that I didn't have MS.  It's not as lame as it sounds, it was just a dream in which I was doing things and nothing was going on.  I was physically and psychologically normal I guess.  I didn't notice I didn't have MS, I just felt fine.  It was kind of nice, until my alarm went off and I woke up.

My first thought was, "Oh, I'm all better."  I popped out of bed and raced to the bathroom.  That was a bad idea.  I wasn't all better and woke up and moved far too quickly for someone that's dizzy.  Oi Vei.

In good news, it was cold today.  Not like winter cold, but definitly cold for a summer day.  That was nice!

Sunday, July 24, 2011

annoyed

Even when I feel the way I do, I still hate hearing about people suffering from MS or inflicted with MS.  Living with MS is a much better way to describe it.  Anyone who knows it, knows what the means anyway.

Saturday, July 23, 2011

questions that don't have answers

"I just try to remember GOD picked us strong people because an ordinary person couldn't manage and deal with this disease!!"

Someone posted this on a MS message board.  It was in a category labeled "guilt" and is totally meant to be inspirational and uplifting. 

That's not how I take it, at least today.  I'm mad that I have MS and constantly asking, "why me?"  Which, I know is a useless question.

I feel so hopeless about the future.  I talked to Kay, the MS nurse today.  She is so freaken positive, it's unbelievable.  I just want 1/10th of what she has. She has this incredible spirit and attitude and is just wonderful.  She says to give it a year.  Give it a year to settle and then things will get better.

I wonder if she's right.  I can't see how it can get better.  I feel like I'm a miserable failure at everything I try.  The thing is, I can tell myself to wait a full year.  Evaluate and see how I feel.  But then what?  What do I do after a year if things still arn't better?  I only see impossibilities getting through the next 5 weeks.  How I am going to last 4 months?  And then beyond that...

Friday, July 22, 2011

Satan called. He'd like his weather back.

Phew.  It's horrible out.  I think it got up to 106 today, with a heat index higher than that.

Now I have MS, and that offers its own unique set of challenges.  But that was not even important to me today.  The safety and wellness of 700 children and 200 staff was much more important.  Were the counselors making sure the kids drank enough water?  Were the counselors drinking enough water?  Were they too hot?  Would the counselors know what to look for if someone was having a heat emergency?

It was a rough day.  I'm happy to report, everyone left alive, including me. 

Now, onto me.  I've been very proud of myself this week.  It's been hotter than haities this week and I've done ok.  I still think I'm having a relapse, because even when I am home and cool, it's still the same, but it's been stable.

I haven't called the doctor, since I know how the conversation will go:
Dr. Dayaw "I think you're having a relapse and should be admitted to the hospital for a few days."
Me: "No, I can't do that, I have to work."
Dr. D: "Ok, then we'll schedule a round of steriods at the infusion place."
Me: "No, I can't get there either.  I work from early morning until late at night."
Dr. *eye roll* "Then what are you doing here?"
Me: "I don't know, I was just scared."

That would sound so stupid.  I decided I wasn't going to call her until I had an answer that sounded even remotely intelligent.  That didn't happen, so I never called.  That made me quite happy.  I did imagine her to have an answer that included, "oh look, I have this one little magic pill that will completely cure your MS right away."  Since that wasn't very likely, I didn't call.

Monday, July 18, 2011

I give up.  I call uncle.  I've gone to the dogs.  I'm a lost ball in high weeds.  I'm as useful as a chocolate teapot.  I've at my wits' end. 

I'm all of these things and then some.  I think this is the beginning of a relapse.  It started with dizziness....constant and nothing relieved it.  I could deal.  It wasn't so bad.  I was annoyed, but was happy to just deal.

Then this afternoon, my vision has been affected.  I can't see to the left when I first look that way.  It takes like 5 to 10 seconds before I can actually make out the pictures.  I'm so very afraid that it's only going to get worse and not get better.

I called the doctor, and then instantly regretted it.  I don't want to be one of those people that calls the doctor for every little thing.  I guess though, this isn't a little thing.  It still annoys me that I am so dependent on her. I want to be independent, and one of those people that sees the doctor every 6 months or a year, or whatever is the recommended amount of time between neurologist visits.  But, I'm not.  I feel safer when she knows what is going on. 

Anyway, she ordered some blood work.  I went and had it done.  They will know the results tomorrow.  I'm hoping its something else, anything other than a relapse.  I don't have time for that right now.

Sunday, July 17, 2011

some days you go to the circus and some days the circus comes to you

MS is kicking my butt today.  Between feeling groggy, dizzy and in general blah, I'm  also feeling hopeless and lethargic. 

Saturday, July 16, 2011

Am I lucky?

My MS nurse has MS as well....when she was first diagnosed the medications were just being put on the market for it.  She got to take something, because she won a lottery.  That's crazy to me.  I still consider not taking anything, and using the wait-and-see approach.  Then, I hear about her and how privledged she felt to get to take medication  and I feel completely ridiculous.

Tuesday, July 12, 2011

drug shortage

I'd be completely ok if there was a shorter of Avonex.  I mean, I'm used to it now, but it'd be fun if I couldn't take it and NOT be called a non-compliant patient.  It would be necessity.

http://www.newswise.com/articles/view/578555/?sc=rsmn

long, hot day


"MS may be part of me, but it is NOT the whole of me!"

I feel like it is.

Sunday, July 10, 2011

they got a file on me and it's a mile long....

And they say that they got all of the proff.  I'm just another case of arrested development, I'm just another wasted youth.


I'm completely in a Meatloaf phase these days.  Most of the time I worry about that, but sometimes I just like to belt out lyrics, really loudly while I am driving.

I could feel a funk coming on this morning too.  Life was good last night.  I saw some good friends from my old camp and catching up was REALLY NICE.  I have missed on of them so much, and to see her was really good for me.

Then, today, I felt it coming.  I wasn't feel particularly well because of my shot last night.  I knew it was happening, because I lied to my friends about how I felt.  Sometimes, I just get sick of complaining.  This morning I also finally looked up those therapists near me that offer evening and weekend appointments.  I really need to call to try and get an appointment with one of them.  I also called the MS nurse, just to chat.  That's always a red flag.  I like to talk to her when I am feeling down.  She's so positive, it always cheers me up.  She wasn't home though.

And then it all hit.  I've been trying so hard to not think the things I think, but it's to no avail.  My thoughts keep going back there.  I'm positive I won't sleep well tonight.  But I will make sure to call those therapists tomorrow.  The sooner I can talk about all this with a qualified health professional, the better.

Saturday, July 9, 2011

t-riffic

I've been feeling pretty healthy lately, and that is a really good thing!  The heat has been intense, but I've done well.  Between swimming, my cooling vest and keeping in the shade, it's been good.

I read an article.  http://www.oregonlive.com/health/index.ssf/2011/06/monkey_multiple_sclerosis_disc.html.  Mono went around my camp lst summer, and I wonder if that's why I got MS.

Tuesday, July 5, 2011

the world is weird

Casey Anthony was acquitted and I spent over $500 on a cookout for 600 people.  Oi vei.

Monday, July 4, 2011

headache

Oh my god...I have the worst headache I've ever had.  It started as a dull headache this afternoon and it's only gotten worse as the day progressed.  What is causing it?

I just read an article that said MS can cause headaches and migranes.  I've never had a migrane but I imagine this is what it feels like.  My whole head is in pain....from my jaw up to my temples.  I feel like it's possible that my brains will start oozing out of my ears.  There is so much pressure in there.

http://ms.about.com/od/treatments/a/headache_tx.htm
For a brief moment, I thought about calling the doctor or going to the ER.  But I'm not.  I need to get through this MS thing on my own and not call her for every little thing.  But dang, it hurts a LOT.

time to breath

It's been a long weekend, and while I've still had to work, I've also had some time to breath. 

We went to see fireworks last night.  Just being out and about felt really good.  I have a foster child here, she is on a bit of a respite pass.  I think it's more respite to her than her caregivers though.

And this time to breath, I've used quite a bit of it to sleep.  Catching up on sleep has been very nice.  I have no idea what the results from my EEG were, but I was definitly sleep depreived.  I feel asleep very quickly.

This time to breath also gives me time to think.  Thinking is bad.  My MS nurse, she has good theories on everything.  She thinks I feel hopeless and that is bad.  I wonder how she can not be hopeless.  My doctor said the obsession I am experiencing is normal.  I feel like it should be gone by now and since it's not, it never will be.  She said to give it a year.  I wonder why a year.  Why is a year a magic number?  Is it because after a year, I will not experience "my first" whatever with MS.  There was my first Christmas with MS.  My first summer with MS.  My first heat wave with MS. 

Oh well, time to get motivated and then go back to being busy.  Busy is good.  I think a lot less about me when I am busy.

Wednesday, June 29, 2011

tomorrow is going to be hell

I went to the doctor.  I'm not really sure what she thinks, but she has ordered an eeg.  But one where I am meant to be sleep depreived.  Which is not really a big deal, as I'm pretty much always sleep depreived in the summer anyway.

Except that included in the instructions is that I can't have any stimulants for the 24 hours preceeding this thing.  That includes cigarettes and caffeine.  Those are two of my most favorite things.

My doctor just said she was doing this sort of study since if she did the other and it came back with no seizure activity, she would end up doing this kind....so she is just starting with this one.

Now, here's my thoughts - I'm not sure what I want it to find out.  If it finds out that I do have seizures, well that's bad.  If it finds out that I don't, well then, I still don't know what happened to me last week.

Monday, June 27, 2011

letters

Dear Doctor,

Please decide that I did not in fact have a seizure and defintily do not decide to take my license away for 3 months.  That would really cramp my style.  Thank you.

Sunday, June 26, 2011

schedules

I hate schedules and it has nothing to do with MS. 

a crazy week followed by the ER

So the week has been insane.  I've slept very little, ate very little, worked a lot and was doing it.  I was tired, but all was pretty good.  Until yesterday.  Yesterday I was at work at 4 am.  A little after 5, I got up to go get something and the next thing I remember is that I was on the floor.  I felt so groggy and awful and it took me forver to figure out where I was and what happened.

I really had no idea what happened.  In one way or another I passed out.  What I'm not sure about is whether or not I had a seizure.  The only thing that made me wonder if I had a seizure was that I bit my lip.  Either way, something bad happened.  And it took me forever to come to.

There wasn't much I could do about it.  It was the open house at my camp and I wasn't leaving fo it.  My boss was great about....he told me to go, but ddn't argue when I said I wouldn't.  I called the doctor and he said I should go as well, and my plan to go after open house.

By time open house was over, I wasn't feeling so great.  My vision had changed and I just decided to go to th hospital.  The triage nurse said it probably wasn't a seizure, since I hadn't had an accident.  The nurse in my room didn't agree with that.  The doctor thinks it probably was a seizure since I bit my lip.

There was a bit of a fiasco about leaving.  The doctor came in and asked me if I wanted to be admitted.  I said no (of course!).  He agreed with that as he said if I was admitted, they wanted to monitor my heart and he didn't think it had anything to do with my heart.

Secod, he wanted to know if I wanted a spinal tap to rule out menegenetis.  I had the vaccine and so I said no.  He was also ok with that.  But whent he nurse came to discharge me, she had papers for me to sign that said I was signing out against medical advise.

I couldn't sign those.  If I did, then my insurance might not cover the follow up appointments.  I told the nurse that and she said she would go tell the doctor I was staying.  I was ridiculously bummed.  But he came in and said I didn't have to sign...basically he was trying to cover his backside.  But I promised I wouldn't sue him. 

Monday, June 20, 2011

go day!

My sight has returned.  The weekend was pretty crazy, and between stress, lack of sleep and my shot last night I lost vision again.  I was dizzy, and everything looked like I was under water.  But a good nights sleep, and it's all back.  That's a very good thing!

Staff training starts today.  I'm very excited!

Friday, June 17, 2011

I'm so smart!

Good grief.  It took quite a bit of work, but I figured out how to post comments to my own blog.  It was a little ridiculous.  I also think its backwards to what it should be, but whatever, it's done.

Now, I have a headache

Oi vei.  My doctor wanted to get a CT Scan done of my neck before this summer camp craziness started.  As I was falling asleep last night, it occurred to me that I hadn’t yet heard back from her office as to when my appointment was.  I planned to call first thing this morning to find out if she able to get me an appointment.

Now, let’s be clear.  This woman who works at my doctor’s office is fairly brilliant.  Brilliant in that she can talk her way though anything and convince anyone to give her things or do things that are against policy.  It’s that really helpful to patients way – get your insurance company to agree to tests they wouldn’t otherwise cover, or get radiology to schedule things that should have a month long wait for…she’s just good like that.

So, I get to work this morning to a voicemail from one of my staff.  He said, “I’m not sure if you got my message on your cell phone….” That makes me look at my cell phone and realize I have three messages I didn’t know I had, one of them from Dr. Dayaw’s office.  Rut-row.  It’s Becky, who has I have an appointment today at 10:20 AM, but I have to be there three hours early.  It’s now 7:30 and I am a half hour away from the hospital anyway.  I panic, organize someone to take care of things for me, and head over.

I get back into cell service about half way through my drive and call the preregistration number for the hospital.  I explain to her why I’m late and ask if they will still take me.  She calls radiology and they want to talk to me.   They told me I misunderstood my doc’s office and that I didn’t have to be there 3 hours early.  I had to fast for three hours.  But, if I was on my way, they’d take me now.  I should note, I listened to the message from Becky, and she definitely said 3 hours early, so that wasn’t an MS moment.

So, lucky me, I got in there, got the CT Scan, and got out all before my scheduled appointment time even.  The woman in preregistration also had a lovely conversation with me about the Y and how much she loves it.  The radiologist who did the actual CT Scan also talked to me for a quite a while about MS.  She was asking lots of questions, and it made me wonder if she suspects she has MS…just the kind of questions she was asking.  It wasn’t polite chat, it was legitimate questions.  Who knows?

I do know that I am very grateful to Becky, who is the best finagler ever, and is able to get appointments no one else possibly could.  I also know that dye they give you – they said I might feel hot and that that feeling was one of the side effects.  She did not tell me I would think I wet myself though.  I was pretty concerned, until I realized I wasn’t actually wet , just warm and it was the dye and not actual incontinence.  Phew.

Thursday, June 16, 2011

I'm usually pretty good with technology

So, why can't I comment in my own blog????  It keeps taking me to this logon screen, which I do, and I press submit and it takes me right back tot he logon screen.

Nevermind that it keeps trying to post my comments as anonymous before it doesn't let me post anyway.  I'll figure it out later.  I'm too tired now.

chicken schnikes

I wimped out.  I didn't talk to my doctor about ANY of the things on my awkward agenda to talk to her about.  I planned to, I really did.  But she started talking about my neck pain and she's pretty convinced it's not neuro.  Which, in my mind, then means it's not a big deal.  She thinks worst case scenero though and she wants me to have a CT Scan. 

The problem, my job is CRAZY now.  I don't have time to have this stuff done.  I'm a summer camp director, and this is my busy season.  It's like February through Apri for a tax agent.  It's like an out of control fire for a firefighter.  It's just my life.  I really can't deal with anything personal during this season.

She said, "your health comes first," which is true, it does, but I also want to have a LIFE.  A life means doing the things I love, which is this.  I can't imagine how bad it will be when I can no longer do it.  Another strong point, that I didn't make to her - but is strong nonetheless.  Without this job, I won't have health insurance, and without health insurance, she won't be in my life anymore.

Tuesday, June 14, 2011

multiple universes

I was talking this morning about "Rabbit Hole" and the theory of multiple universes.  In each place you are a different person, in a different situation and all these universes run parrell with this one.  We made a bit of a game out of figuring what forms of me there are out there.

* One without MS (of course that was the first one I thought of)
* One where I'm a criminal
* My favorite color is...(ack) pink
* I am a tatoo lover
* I don't like working with children
* I have lots of money

In order news, I got a bill from my doctor today.  I was keeping track of copays, cause they never asked me for them there, but then I forgot and now I have a big bill that I need to work out how I am going to pay.  I have an appointment this week, but I'm not sure if I have to pay this whole bill first.  If I do, I may need to cancel it.  The sucky thing is that I can't reschedule it until after August.

I had been working myself up to talk to her about some things that I just really don't want to talk about.  One just seems silly and like I need to get over, and the other, well, it's a little ridiculous.  I can't find ANYTHING anywhere on the internet about this being from MS or a side effect from Avonex, yet I've been keeping track and like clockwork, it always happens 2 days after my shot and lasts until day 5.  Anyway, it's embarassing and I know she's a doctor and yadda yadda yadda. 

I have until tomorrow morning to work out how to pay this bill, or I have to cancel the appointment.  Other than those two pesky things though, I feel good!

Friday, June 10, 2011

is the unknown better than known?

So, the xray has confirmed I don't have an extra rib.  Which, is kinda sad, cause that woulda been a cool bit of trivia about me.  But I don't.  So, I don't know what is wrong with my neck.  My primary doc is out, but she had another doctor covering for her.  He was VERY NICE.  I'm usually fundamentally opposed to male doctors, but he was lovely.  Not quite my neuro, but good nonetheless.

He said I should talk to my neuro about it when I see her this week.  Then I guess if she is still adament about it, call the primary.  I'm a summer camp director and next week starts camp.  For the next 10 weeks, my life will only consist of camp, and pain or not, I won't deal with it until September.  I love this life :)

Wednesday, June 8, 2011

I have a wierd pain, and it's not neuro!

I think I love that fact that's my strange neck pain isn't MS related.  I also love Dr. Dayaw.  She's so smart, straight forward, down to earth and wonderful. 

I called the office yesterday after the third person asked me why I hadn't called the doctor.  They called back later and said she would just see me next week (for my regular appointment), and if it got worse to go to the ER or call my primary. 

But then she was at the MS support group tonight.  She did a presentation about MS drug medications and what not.  Afterwards, I was talking to folks and ended up talking to her.  Which by the way, is just awkard.  I feel like she's this genious and prestigious person and I'm just me.  So talking to her in real life is awkward.  And she asked me, "so what's going on with your...foot?" That's another reason why she's great.  She didn't even see me yesterday, just my name and she remembered.  Admitingly, it was my neck, but close enough.

She looked at it and poked and such and then declared she thought I had an extra rib.  Now of course, I'm no doctor, but I have no idea how a 33 year old woman just suddently develops an extra rib. But I will call my regular doctor tomorrow and ask her to order an Xray, which of course is what Dr. Dayaw said to do.

I should also mention I balked a little about getting the xray and my doctor said, "it doesn't hurt...why don't you want to get it done?"  And when I just shrugged, she said, "you don't want to know the results." 

She's brillant and honest and I just adore her.  I'm SOOOO happy she's my doctor.

Monday, June 6, 2011

one of those people....

So, for the past few weeks, I have been having this really weird pain.  It's in my neck, right above the boney part (also read: no pertinent organs located anywhere in the vicinity).  It's this sharp kind of pulsating pain.  When it's acting up, it shoots down my left arm as well. 

So, the first time it happened, if it had been any lower, I think I would have gone to the hospital.  I describe this pain to my friends as "my heart attack in my neck." 

Anyway, my friends asked me today if I told my doctor.  I did not.  My doctor said a while ago that I should tell her about things that last more than 24 hours.  This did not.  It came and went.  It didn't last more than 24 hours straight...it just happens every couple of days.

I didn't want to call, cause I didn't want to be one of those people that calls about every little thing.  But now I'm afraid I'm one of those people that doesn't call when symptoms are acting up and something could be done about it.  Pahumph.

Sunday, June 5, 2011

postsecret

I've been following postsecret since the beginning, almost.  When I found out about, very few people had.  I felt cool.  I've read all the books.  I've seen Frank Warren in person.  I had the kids in my afterschool program send in secrets (none of them were published).

I want to send an MS secret.  I've never seen one about MS.  But I have no idea what I'd send in. 

Saturday, June 4, 2011

Save the Boobies. Don't let cancer steal 2nd base.

That was a tshirt I saw tonight.  MS has some cute t's, but that one is by far the best.

So, I did my shot again tonight.  I was super ridiculous about it again, and it hurt again, although not as bad as last week.  I've been feeling pretty sad again lately.  No matter how silly I sound, I am definitly going to talk to my doctor about it when I see her in a couple weeks.

Wednesday, June 1, 2011

proud

I am so proud and happy with myself.  In the evenings, I always feel so bad, and I was worried....really worried about my job and the evenings.

And there were big storms going through my area tonight and I did ok...better than ok.  Great!  I could make decisions, deal with issues, and life was just good.  I feel so much better knowing that when it counts, I can do it.  Not only can I deal with not feeling great, I don't even notice when it counts.

Tuesday, May 31, 2011

forgetful

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

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

Monday, May 30, 2011

obsession

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

parades!

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

Sunday, May 29, 2011

ooouuuuch

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

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

What you see depends on what you are looking for.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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