The Good the Bad of my Life With Stiff Person Syndrome

HAPPY NEW YEARS! So this year started great with some family around and fireworks! The first week was a bit crazy I had IVIG and had to go back home early to San Antonio. It had it for the usual three days. Although I had my eye on the prize, but God had other plans. Thursday I had a mini seizure then came Friday I had a seizure that lasted over 24hrs. I was visiting Laredo was placed in the hospital and no doctor wanted to take my case. After a whole night they realized I needed to come back home! BUT the hospital I needed to go to wasn't expecting patents. So I was sent to another hospital that has no idea what my disease is or what to do. I've been waiting since Sunday to get transferred to University Hospital. I was told by mid morning but I'm not holding my breath till im there I'll bel them. So I got sick big set back! I was walking staying at home alone! I guess it's back to 24hr watch from my parents!!! :(

Who would have known that year would go back so fast it started off rocky to say the least and now look at where I am... As January came it was sure that I wouldn't see Physical and Occupational Therapy for a while. My heart just wasn't taking it, so it seemed that was off the table till there was a solution. Although we all knew what that was we didn't want to think about it, surgery. Once the time came the doctors told my mom she'll be out in one hour that hour came and went, and I was still in surgery my cardio doctor was not taking no for an answer. My parents were updated on my status so they weren't to alarmed, but when he came out and said I was out and in recovery he explained to them that no matter their efforts my heart rate was never going to be normal at that alone was a problem. I was going to have to be a heart medication to help stabilize my heart rate, but it was almost never going to go lower then 80 beast per min. You might think that's norma...

 So October came and went so fast that it was crazy. It seemed like only summer when were getting everything together for the SPS think in Vegas, but here it was that day pasted so fast. Not to mention the night some of didn't want it to end! Although we left now being able to put a face to that person we had been talking to over the computer we left with even stronger friendships. Here are some of the picture from dinner             Like I said that day came and went so far and I'm glad people got to hang out afterwards. I on the other hand had to come back home. So I started Physical and Occupational therapy since then and I'd like to think I'm doing pretty good. I've had little set backs but nothing major. Although I'm pretty sure I've aggravated every muscle in my body. I have my up and down days just like everyone else, but thank God I have my mom with me. She always tells me..." When ...

So it's August and my doctors have been asking when do you think you can go back, and I'd always answer when insurance lets me! LOL   Finally I went to see my neuro Dr. Sanka and she tells me I'm doing so much better then she had even seen me. I was still have spasms and stiffness, but she mention how it was finally time to take the chance on Physical and Occupational Therapy while I'm doing so well with the new treatment. I said fine in a way I couldn't wait to go back I missed being in San Antonio and my friends. See you have to understand something with me lets go back a couple of years so you can see how I see things.   I moved to San Antonio at 17 to attend Our Lady of the Lake University were I was pursing my dreams of becoming a doctor myself. I was halfway done with my credits I was the youngest junior in school I think. My I guess official freshmen year I spent it like many well n...

My friends with SPS raising AWARENESS!                         MY friends without SPS raising awareness!                                                                                  And Me...                                      

I'm Hi guys here is where you can place your Stiff Person Syndrome T-shirt order. Thank you for helping raise awareness that way we can be SEEN and HEARD about this RARE  disease. It might just be the push to get help we need to get doctors understand it better, and maybe start doing more research for all of us!  Each T-shirt is $20.00  I'm using the flat rate boxes to make is easier to sort out and fast to get them out to those who order. So for 1 T-shirt it's $5.80 extra for shipping, because only one of them fits. Anything more then 1 T-shirt is $12.35 and with here you order as many T-shirts as you like.  These prices are only for the U.S. people placing orders anyone who want one from another country can email my person account at vanessa.rmz.88@gmail.com If a mistake is made in the order please return the T-shirt and I'll give you a full refund on your shipping and send you the right T-shirt.  Also read about make whatever kind of donation...

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...