The Good the Bad of my Life With Stiff Person Syndrome

So you might think I have it all going for me now... yeah that's not the deal see I haven't been able to go back to physical therapy or occupational therapy nor have I been able to go back to the gym. I'm on more medication then I have ever been. My cardio has given me release to go back and do all those things, but I've got obstacles after obstacles to go through. First they cardio doc wanted all my doctor's to give me the OK to go back. So second my neuro doc gave me the OK to go back to pt and ot, because I was stiffer then I was before. She continued my IVIG but keeps pushing chemo, although I don't want it I rather stay on IVIG a lot less side effects not to mention I think I'm doing pretty darn good on it. Then came my PCP she was like right away all chilled back yup go back to pt, and I was till I had an episode... My new episodes which we all like to call Vanessa falling in to a COMA! Yeah that's right I fall into such a deep sleep it's c...

During PT and OT I'd get my vital check and once in a while I'd have my heart rate a little high and some times a little low. Not to mention my blood pressure that was just dang right LOW sometimes and couldn't do crap. That wasn't until one day I'm rolling myself into the clinic and I get my pulse check and it's in the 160s HOLY CRAP they all just look at me and tell me how do I feel I'm like fine nothings wrong why? They show me the monitor I'm like well I feel fine... Right away they are like no we can't work out your going to get sick I'm like guys really I'm fine...NOPE they start calling every doctor they can first my Cardio nothing no answer he is busy, next Dr. C. my asthma doc she's like if she feels fine go for it, they are still not convinced they call my PCP Dr. B. total trip killer!!! NO to high needs to rest I look at my mom I'm like dude that's all I've been doing all day resting! At this point I'm like maki...

Now comes the topic of PT and OT from before... This all happened in 2011 to 2012... Yes I was no longer at physical therapy in Dr. G. clinic because it was only for her patients, but once a week I attend what was called Wellness kinda like gym membership at Dr. G. clinic and get therapy from them in order to use the off weighted device I did that till I could. So off I went back to where I was before at Out Patient Rehab for Baptist Hospital. I was going to PT and OT at the out patient clinic from the hospital where they made things fun and I was able to joke around with them, but still get my work done till I couldn't and I'll tell you why in a minute. For now I'll tell you what I was doing I was getting better slowly, not a big difference from the last place because this place didn't have the off weighted device. Let me clarify something before I go on at Dr. G's clinic the Physical therapist there was amazing I can't complain. She and her staff made my...

So I've been M.I.A. for a couple years now and I guess I should update you on what's going on now. To start off I'd like to say that a lot has changed, and when I mean a lot I mean WOW really that much huh?! Let's start off with since you've heard from me last I've got a new Neuro Doc and she is amazing. Not that my other Doc wasn't just that this one has a little better understanding of SPS, and isn't afraid to tell you see means business! She isn't the only neuro on my case now it's a team of doctors that collaborate, but she's the GRAND S*TH when it comes to my case. I've got the same PCP which I wouldn't change in the world, unless she was like, "Vanessa I can no longer have you as my patient anymore." Trust me I've heard that once or twice since my last post. So ok lets get to the good stuff right?! Well new Neuro... Check! No more IVIG for more then a year... WAIT WHAAAAT!!! Yeah that was me from September of...

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...