The Good the Bad of my Life With Stiff Person Syndrome

So was made it to my physical therapy this morning knowing that right afterwards I had my check up with nurse practitioner, but when I got there they decided it would be best to see her before that way she could see how the new medication was affecting me if it was. Either way we went she decided to start me back on tizanadine every 2 hours, occupational therapy, aquatic therapy, and message therapy. HA there is only so much that can be done in three day I guess we are going to have to find a way to stay either longer or figure out a way to make it all the things I've got to do. Now I've got to see her every week for a check up until my doctor appointment with my neuro. YAY! Well not really if you didn't catch my sarcasm... I've got this crazy idea that maybe I need a break. I need to spend a lot of time on my homework and studies, and staying in San Antonio doing all these things keeps me away from all of it. I constantly have to explain to my teachers why my assignmen

That's all I heard real loud as I walked the old pt faculty... then I got the oh shut the front door this bad again! After what seemed an hour of explaining both the pt and ot seemed to grasp the concept that I was not kidding when we first talked. Not to mention the doctor didn't really explain how bad it was. So after that he gave me the papers and explained as much as he knew about the pump we went over the pros and cons,and figured it was worth a try. Before leaving we did have to talk about the good old days. Throwing frogs, coming in with blood covering half my face, and most of all kicking the pt butt at karate. It was fun! Before leaving I was told hey this door is always open. Glad to know they are still there.

Tomorrows the day I go visit with my old pt dude. He was the first to explain the baclofen pump to me and explain what it was and what it could potentially help. Although since no one really knew what it was I had no doctor really wanted to touch on the subject. I'm super excited to visit, but scared of what they are going to say. See these are the guys my PCP want me to go back to their faculty, since the pt director running my case back at the other place left. My doctor has been trying to convince me to to back. See don't get me wrong I miss the old pt dude, funny ot lady, and most of all the pt director, because she pushed me to do so much more and not allow the pain to get the best of me. She reminded how sometimes no pain meant no gain, and needed to over come the fears of falling, because no matter what she was always there to pick me right up. I guess that's why I like the place I'm at because I felt the same way. She was all three of them at once: Pt dude- advo

This morning I wrote something because I was frustrated with everything that was going on doctors saying one thing, while another said an other. Till finally I calmed down after a few phone calls to a friend and someone else who explained that everything happens for a reason, but before that all I felt what I thought was anger and well when I feel like that I tend to write. And this is what it said. We all have our moments... and I'm the first one to tell you that I've had many in my life, but not nearly enough to have this happen. I've lied and said stuff to get me out of things, but never to the point were I did it to hurt some especially someone close to me. I forget things, in fact I forget a lot of things, but never the stuff that's important. I'm a social person and I love my friends, but you've silenced me and now I'm not myself. You've hurt me more then anything or everyone else I've ever meet... even more then you can imagine.

A lot has happened since I've wrote last... see I've came and went to the Mayo Clinic with more question and no answers. So I've decided that my journey with the Mayo Clinic is over. And now I'm losing faith with the doctors I have... See things don't seem to add up anymore, and the one person who was trying to put things together is no longer at the faculty I was in. Although we still keep in touch and is helping me get though somethings. SO as of now I got to physical therapy is three times a week and that is if they have availability since the main pt left. They try to fit me in as much as possible, and have me stay there as long as I can in order to try to get back to where I was before. Although to tell you the truth all this madness going on with the doctors and medication has just made things worst. To start off since I came back my medication dosage has dropped drastically. See before I was on: Tizandine 4mg every 2-4 hrs. Baclofen 40mg twice 4x a day Valium