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

So tomorrow we leave to the Mayo Clinic early in the morning and I realized how much I hate flying! Although I know this is was is best for me and I cant wait to find out what they have to offer. I know everything is going to be great! We should get there in the afternoon in Rochester and get settled in our hotel. I'll keep everyone inform as the days past about what is going on if I have a chance and feel like it.

So since I've been diagnosed with SPS I've been in and out of physical therapy. First I was at a hospital's outpatient center. When I started it was crazy! I was pushed to to the limits. The pt and ot there at first made me cry because they wanted me to do better. So I did... I tried and tried my best, but my legs where just not responding not knowing I had what I did. Any ways I was there for a year or more which the end result ended with me walking, but it wasn't walking walking I looked like I was drunk sometimes. Whatever they got me walking right! Finally after being diagnosed my neuro wanted me to go back, so I did to the same place but only for a while. Six months at the most I went before my doctor told me to take a break. I was fine not going because it was painful, although I had fun! The pt Chris would just make things fun while my ot would come up with the funniest thing sometimes. Now after this last episode I've been place at a different physical t

So last night was the benefit concert at Old No. 2 it was a great turn out. With out my cousin it would have never turned out the way it did. I'd like to thank all the people who went and as well to you know who for doing what you did. Never expected it in a million years for you to go although I wished you could have stayed. All the bands that played where amazing! Enjoyed the whole event even though I had to keep a close eye on a certain person to make sure she would go all crazy/postal like always lol you know I'm kidding! love you girlly !

The plate sale turn out was great! Most of my family showed up from out of town and the ones from Laredo, so did some of mine and Vic's friends showed up to help. It's great to know that I've got my family and friends supporting me. We sold all the plates, some sodas, waters, and for some people who shall remain name less even sold them self lol. jk! Any ways it went great! I can't believe we were able to pull it off.

So today is the Steak Plate sale my family and friends are throwing in order for my mom and I to be able to attend the Mayo Clinic this summer! I'm suppose to be asleep at the moment, but since all the hype I just cant see myself falling asleep! The support from the community has been beyond super! Family from all over Texas is coming in to help out today and are starting to set up as we speak... Last night my friend Ashley and I stayed up doing poster, t-shirts and all these little details that had to be done so everyone wouldn't have to stress. Oh my if it wasn't for some of my friends and family today wouldn't have happened! There support has been tremendous! Not to mention the fact that the local News Cast show a bulletin about today's plates. Oh do I hope its a success I don't want any burden on my family! As much as I give them now its crazy how they are still by my side ! I cant complain one bit... and with their straight and courage is what keeps me

Hey you band students remember that! Well today I went to the band hall after Mr. Duran gave me the opportunity to talk to the students about Stiff Person Syndrome. The reason I was mostly there was to show awareness to what this disease really is, and how it effect my life and people like me. Also Mr. Duran wanted me to go in order to ask the student to help me reach my goal to get to the Mayo Clinic. I'd like the say the response was wonderful the students were receptive of what I had to say. Some weren't even afraid to ask question... including how do I go to the bathroom. Crazy HUH?! But I answers honestly because I wanted them to know that this disease effects a lot of things not just what they read online and in books like some doctors think! I was so excited to be able to see all these young faces... hehe young faces I'm just like four years older, but in all reality some of these kids had never put a face to a disease in there life and for them to now be able to do

So right after being told I HAD to go to the Mayo Clinic my family went in to HOLY CRAP mode! How the heck are we going to get there!? How's going to pay for everything?! Does the insurance cover everything?! ALL THESE QUESTION! But with the quick reaction thinking between my cousins and aunts they came up with the idea of a steak plate sale and other crap ola! Everyone starting throwing ideas after ideas of how to get things, how people donate things and how everything works. Finally we got a cheif and the indins started to follow! lol. So everything is planned for April 24, 2010!

My mom calls my neuro doc. and right away they see us. She is amazed at the fact that she wasn't called because if it was for her I should have stayed there. She ran blood work and gave me a steroid boost. Since I had just had my IVIG a week prior. Afterward she said she wanted to see me the following week and begin pt right away. Following week, I started school and didn't know what to do. I emailed all my teachers who were some what understanding. Yeah NO! To let them know the situations that was going on. Since most of my classes where online I didn't have much to worry about except my A&P class, but at least he was the one and only teacher that understood. So the week started and so did pt evaluations, more doctor's appt. and extra treatments. AGH I was starting to go even more crazy then I already was! jk. My neuro started me on a new medication called Keppra that's suppose to be for seizure but seems to work for spasms as well. Did good for a while. My mom

I started to get ready for school, which meant having to see all my Docs. before school starts to make sure I have the OK! PCP was first... Everything looked good heart rate a little high, but she said nothing to worry about. Endocrinologist was second... Blood work came out so so... sugar where getting better, but not great! Allergist came in third... Lung where OK she wanted to start me a new medication called Zolar for my allergies and to improve my lung function. Exam when OK just with my heart rate going crazy again! She took a note of it and sent it to my PCP. Then Last came my neuro... Spasms were OK kinda... medication was starting to work better so she gave me the all clear! Finally got registered for school and got ready for a long semester... Who would have though long would be the understatement of the year. Once school started I had the regular mumbo jumbo about me being and getting sick which got straighten out with one phone or letter cant remember from my PCP. Classes

You can say it all started when I was a kid… my parents and family members all knew me as the one that fell a lot. I’d fall at home running around, playing outside in the front or back yard, and even at school, see I didn’t just fall and hurt my arm no I’d fall face first for everything. When my parents took me to my doctor he just said I didn’t have the same reaction other kids have by putting the hands forward and when I would I’d end up hurting my wrist, arms, and knees all the time. So I was a clumsy kid! When I was in high school freshmen year I was having hard time breathing if it was during band practice or even soccer practice it just seemed like I couldn’t breathe. It was a weird concept that none of us understood. I knew I had this problem because at the beginning of the school year every time to join any type of active activity you had to get a physical, and at that time we had a doctor that came to the school that did our physicals. The first year he noticed some littl

What is Stiff Person Syndrome... Stiff-Person Syndrome Information Page: National Institute of Neurological Disorders and Stroke (NINDS) : "Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. People with SPS can be too disabled to walk or move. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutam

My names Vanessa and I’m attending College to eventually become a Great Doctor. I’m taking it slow because I’ve been force to face obstacles that most people wouldn’t be able to handle. When I was 20, I was diagnosed with a rare neurological condition called Stiff Person Syndrome, and because of that I’ve had to put some things in hold to be able to overcome what I’ve got to face. I attended Our Lady of the Lake University in San Antonio for two years as Biology Pre Med major. I miss OLLUSA, but hope to go back someday to finish off what I started. If not I’m sure I’ll be able to get my degree elsewhere and get to achieve what I hope to become. I love my family even though they annoy the crap out of me sometimes. They are a big part of my life no matter what they say or do sometimes, and with that said I will always love them. Lately we have been able to start up a new company that has brought our family closers than ever. My friends also play a big role in my life because without them

I'm living with SPS better known as Stiff Person Syndrome and many other medical conditions is who I am. Don't get me wrong they are not all I am. For I'm the one person you'll meet that has more going for her self then you can ever imagine. See I've learned to live my life with an optimistic attitude, because if I didn't I wouldn't be where nor who I am today. With family by my side I've been able to over come all the obstacles put in front of me. AND with that said and done I'll explain my story with SPS and all the medical thingys going on.