Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

My Week in Chapters

Written by Katie. Posted in Challenges, Physical Therapy, Teaching

Chapter 1: School

I told Zondra the other day (the afternoon teacher in our classroom) that I finally felt like the kids and I were getting into a rhythm.  She agreed that she felt the same way in the afternoons.

The procedures are established, the kids have adjusted, I have adjusted, and we are finally into the “meat” of things.  Sounds, letters, numbers, the 5 senses, pumpkins, art projects, storytelling, and the list goes on…

I am a little freaked out that it is almost conference time.  How the heck did that happen?  I am hoping for good feeling days for the nights we have conferences since my body is not used to working at night.  I am just hoping I can figure out a way to manage rehab and naps in between teaching in the morning and holding the conferences at night.  Fingers are crossed.

On Tuesday, I learned a lesson about communication.  One you think I would have learned by now.  My principal came to me when I was dropping my kids off at art class on Tuesday, and said that because MEAP testing had started, she needed to pull my assistant to help her with MEAP stuff.  Knowing how crazy MEAP time is, and thinking I could handle it, I told her okay.  This meant that I had to stay in art and assist the teacher, since my assistant was not there to do so.

I was on my feet from that moment (8:55) on.  My assistant ended up being away all morning, which meant I was up, on my feet, managing all 30 kids by myself.  Of course this was the morning a pitcher broke, a big plant fell over, there were tears from a couple of kids, and I found a few kids who thought it would be a great idea to roll around in the dirt from the plant that had fallen over.  I was like a chicken with my head cut off running around putting out fire after fire.  By the time I took my kids to lunch I was struggling.  I could feel the brain fog, fatigue, dizziness, and headaches set in from being on my feet too long, therefore causing me to not get enough blood to my brain.  I kept telling myself, “just a little bit longer,” before it was time for me to leave for the day.

When my assistant came back, she could tell I was upset and not feeling well.  She informed me that she was going to have to be out of the classroom for the rest of the days that the MEAP test was being given.  I had to fight back tears.  I told her that I needed to talk to the principal.  Long story short, when it finally got to the end of the morning, I had a parent who was waiting to talk to me.  After talking to her, I looked at the clock and saw I had to be at therapy in 25 minutes.  This left me no time to talk to the principal.

I decided I would talk to her first thing in the morning, and left for therapy.  I got to therapy, ended up crying my eyes out for different reasons (see Chapter 2), went home, and crashed hard.  I ended up sleeping for two hours.  When I woke up I saw that I had missed a call from my principal.  She was calling to apologize to me for pulling out my assistant, and she did not realize how crucial it was for me to have her with me.  She told me in the message that from here on out she would no longer be pulling her out of my classroom.

I felt a mixed bag of emotions.  Relieved, embarrassed, guilty, and honored that she would take the time to call and apologize.  I knew right away that one of the teachers I worked with must have talked to her about me, and my situation.  This teacher knows everything that has happened to me in the past year.  I know she went into that office like a Mama Bear protecting her cub, to tell the principal that I needed my assistant with me.  Bless her heart.

But I still felt guilty.  I felt that I had not advocated for myself and had not communicated with my principal like I should have.  I had never even told her what was wrong with me.  Since she is new to our building this year, she did not know any details about me and why I did not teach last year.  She had no clue I had POTS and EDS.  I still think to myself, how stupid it was of me not to tell her any of this at the beginning of the year, but I think it was a matter of me being in denial and stubborn.  In my mind I did not want my first encounters with her to seem like I was focusing on my diseases, or using them as an excuse or a crutch.  I wanted to make it clear to her from the start that I was there for the kids.

Also, in my mind, not telling her was a chance for me to start fresh; to not allow POTS and EDS to stand in my way.

Well they did on Tuesday.  They sure showed me.

I ended up emailing my principal all of the basics about my history, POTS, and EDS and why it is important for me to have an assistant.  I apologized for not explaining my situation to her sooner.  I think I said something to the effect of, “I can’t expect you to understand, if I don’t communicate, right?”

Needless to say, we talked the next day and she has been nothing but supportive ever since.  She promised I will always have my assistant with me, and she has checked in on me everyday, to see how I am feeling.

In a way, it still boggles my mind as to why I never communicated this important information.  Maybe I was hoping that while I was at school, EDS and POTS would not touch me (stupid, I know).  But I was reminded this past week that these two diseases are now a part of me, and they are here to stay.  I have learned that even when I want to fight it, with every bone of my body, I still must communicate about these illnesses to the people who are important in my life, so that they can understand me and my needs.  Communication is a part of moving forward and being successful.

Chapter 2: Physical Therapy

So after leaving school in tears on Tuesday because I was frustrated and did not feel well, I left for physical therapy.  I got to therapy, got on the elliptical, and started doing my cardio work.  It actually felt kinda good to pound those pedals, after the morning I had just had (remember chapter one, i.e. kids rolling in dirt).  After my therapist finished up with her other patient, she came to get me off of the elliptical.  She told me to come with her because she needed to talk to me and quote, “I was not going to like it.”  We went into a room.  This is when I knew she was probably right.  The last time I was taken into “the room” was for our rest and recovery talk.

I said, “You’re leaving aren’t you?”  She told me no, she was not, and to just sit and listen.  She explained (with tears in her eyes) that her boss had come to her that morning, to talk to her about discharging me.  She told my therapist that her concern was that since I am back to work, and have met a lot of my goals, and appeared to be doing “well,” that my insurance company could look at my chart and say I am not making enough gains to continue.

To be honest, this blindsided me.  It took a while for me to get my thoughts together and become rational.  I told my therapist that I was not at all happy about it, and my doctors would not be either.  I also explained to her that I did not understand this rational for discharging me, because when I had my 4 arm surgeries, I had to do 6 years of occupational therapy to learn how to use my arm and hand again, and I never had any problems with my insurance.

Then between my tears and the fire I felt inside of me, I went off.  I began to list all of the reasons as to why I feel I am by no means ready to be discharged:

  • My doctors also feel I still have a lot of PT work to do.  In fact, one of my doctors wrote to my insurance company as to why I need more visits than what I am allowed per calendar year.
  • Yes, I may be doing “well,” compared to last year but a) there is a reason for that-PT! and b) what do you use to define “well?”  I am still not working full time, like I was before I became sick.  Returning to work full time, is still a major goal I need to work towards.  Maybe it is a matter of updating my goals.
  •  I still need the resources at therapy to maintain my program at this point.  And when my neck, or ribs happen to sublux, it is important for me to have access to my therapist who has been with me from the beginning.
  • I started to question if the people making these decisions actually know about the ins and outs of EDS and POTS.  I explained that if they did not, I would be happy to sit down and educate them.  Basically I would explain that the whole hallmark of PT is for me to maintain function to live my life, by consistently strengthening my muscles to hold my body together.
  • I explained that I JUST went back to work.  It has not even been 6 weeks.  It has been a hard adjustment with school AND therapy, and I feel in my heart that it seems to be the absolute worst time to pull me out of PT.
  • I also reiterated how much time and hard work it has taken me to get to the point where I am today.  I sobbed explained that I still felt like I had a lot of work to do, and that I am so afraid of backsliding without physical therapy to keep track of my progress, and to help me continue to move forward.

My poor therapist.  She sure got an earful after I entered into the “advocating for myself” mode.  But she also agreed with a lot of what I had to say.  It seemed as if I was preaching to the choir.  She told me that she was going to go back and talk to her boss to see what we could work out.  She would explain our reasoning, and then see what she says.  So that is how we left it…

As we were leaving “the room” she hugged me and said, “You’re awesome, girl.”  I told her I was going home to crawl under a blanket and sleep because I had had enough.  This is when she said, “Get your ass on the equipment.  You’re going to strengthen first.”  So with my red, puffy, defeated eyes, I got on the exercise ball and exercised away.  I couldn’t help but think to myself, “and this is exactly another reason why I am not ready to be discharged.”

I’m staying tuned as to how this will all unfold.  I’m sure my doctors will be weighing in soon.  In the meantime, I have been trying to stay positive and have been telling myself that it will be okay…That I will be okay.

Chapter 3:  Wednesday, Thursday, Friday, & Saturday

So I can’t leave this weekly story on a yucky note.  I like stories that have happy endings.

The rest of the week went much better.  I felt so supported and empowered at school.  It was like a weight had been lifted.

I told myself that the decisions being made right now at therapy were out of my control, so I continued to rehab on my own the best I could.

And one of the best moments of the week?  One of the parents of one of my students came to talk to me Friday morning.  She had read my birthday wish list post and wanted to tell me that she would love to help me organize an invisible illness fundraiser.  I guess it’s time to get working on making this dream a reality.

Oh, and Saturday?  Well, let me tell you what happened today.  If you haven’t heard, MSU beat U of M for the 4th year in a row.  I am, and always will be, proud to be a Spartan.

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