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 considered a coma. For the past year or so I've been fighting these episodes, while at first I would be rushed to the ER since I wasn't responding. Once there I would be intubated, sent up to ICU, monitored for hours even days, and then out of no where I would wake up, but once I did it wasn't like oh she woke up no I'm like psycho crazy. See I bit my nails till I've got none, vomit like the there's no tomorrow and make no sense to what is going on around me or what I'm saying. So just in case your a friend and I have your number on my phone and you get a random text that you don't understand what it means I'm still out of it. It takes about two days to a week for me to finally snap out of it. I've seen sleep disorder doctor and he can not find anything wrong with me. The only explanation is my dysautonomia that's making go into these episodes. Now instead of going to the hospital I stay home my mom and dad work clock works I have a pulse oxygen machine to check my heart rate and oxygen levels, a blood pressure machine to check well my blood pressure, and my PCP on call just in case something is not right. Not like being home and doing it our self is right, but they want to refrain from me being intubated to many times, because the last time I got pneumonia from being on the machine to long. So yeah my parents have this down cold pretty much although now when I throw up I can't, since I've got no gag response my parents have to literately push on my stomach like they are giving abdominal thrusts. They have to do that since I'm literately choking on my own vomit. My parents take turns sleeping while I'm asleep and once I'm awake some thing, while one sleep the other is watching over me making sure I don't do something stupid for example think that I can walk when I can't. Yeah that's what they have been putting up with now my EPISODES!
Now comes the good part last September for a whole week I stay at University Hospital with all these little electrobs to see if I was having seizures other wise known as a 24 hour EEG study. Yeah that whole week I spent there NOTHING! No seizure not even one out of all the weeks to not have seizure it picked that one, and in order to do so they took me off some of my medication. That week was HELL! I couldn't move my breathing was getting worst every day till I was finally put on oxygen to help with it yeah didn't work. The coordinator and doctors started to worry more about my breathing then my seizures at this point. I was put back on my medication was left there to stabilized and yet no seizures. I was released and said no you don't have a seizure disorder I was like YEAH one thing off the list... but lets put two more they did find out I had some type of trauma to my left occipital lobe as if I had fell or hit myself hard there and partial frontal lobe trauma as well, but that one we knew I was going to have since I feel so many times when I was a little kid and hit the front part of my head but never the back. It was all a mystery! Which got even weirder while I was having all these test done to see if I had some type of sleep disorder out of no where in each EEG they did I had seizures. Two in the over night study and one while I was at the clinic getting checked out. I feel like I usually did to the floor right away the nurses stuck all those sticky on my head and I was having a seizure right in front of the doctor. He was like I'll be damn and this whole time we had you as no seizure disorder I was like yeah my body like to play jokes on you doctors and your test. He just laughed sent my reports to my neuro who was as shocked as the sleep disorder doc that they had about the neuro department at the University reading to make sure it was what it was, and my sleep disorder doc did the same shared it with his practice and even sent to a friend out of town in Houston to read to make sure they were not reading it wrong. So guess what I guess I do have a seizure disorder after all. Damn and here I though I could cross that off the list.
So since those episodes started I've got more seizures test then any one I know. I've been diagnose with epilepsy and MAN OH MAN IS THERE MUCH MORE... but that's for another night!
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 considered a coma. For the past year or so I've been fighting these episodes, while at first I would be rushed to the ER since I wasn't responding. Once there I would be intubated, sent up to ICU, monitored for hours even days, and then out of no where I would wake up, but once I did it wasn't like oh she woke up no I'm like psycho crazy. See I bit my nails till I've got none, vomit like the there's no tomorrow and make no sense to what is going on around me or what I'm saying. So just in case your a friend and I have your number on my phone and you get a random text that you don't understand what it means I'm still out of it. It takes about two days to a week for me to finally snap out of it. I've seen sleep disorder doctor and he can not find anything wrong with me. The only explanation is my dysautonomia that's making go into these episodes. Now instead of going to the hospital I stay home my mom and dad work clock works I have a pulse oxygen machine to check my heart rate and oxygen levels, a blood pressure machine to check well my blood pressure, and my PCP on call just in case something is not right. Not like being home and doing it our self is right, but they want to refrain from me being intubated to many times, because the last time I got pneumonia from being on the machine to long. So yeah my parents have this down cold pretty much although now when I throw up I can't, since I've got no gag response my parents have to literately push on my stomach like they are giving abdominal thrusts. They have to do that since I'm literately choking on my own vomit. My parents take turns sleeping while I'm asleep and once I'm awake some thing, while one sleep the other is watching over me making sure I don't do something stupid for example think that I can walk when I can't. Yeah that's what they have been putting up with now my EPISODES!
Now comes the good part last September for a whole week I stay at University Hospital with all these little electrobs to see if I was having seizures other wise known as a 24 hour EEG study. Yeah that whole week I spent there NOTHING! No seizure not even one out of all the weeks to not have seizure it picked that one, and in order to do so they took me off some of my medication. That week was HELL! I couldn't move my breathing was getting worst every day till I was finally put on oxygen to help with it yeah didn't work. The coordinator and doctors started to worry more about my breathing then my seizures at this point. I was put back on my medication was left there to stabilized and yet no seizures. I was released and said no you don't have a seizure disorder I was like YEAH one thing off the list... but lets put two more they did find out I had some type of trauma to my left occipital lobe as if I had fell or hit myself hard there and partial frontal lobe trauma as well, but that one we knew I was going to have since I feel so many times when I was a little kid and hit the front part of my head but never the back. It was all a mystery! Which got even weirder while I was having all these test done to see if I had some type of sleep disorder out of no where in each EEG they did I had seizures. Two in the over night study and one while I was at the clinic getting checked out. I feel like I usually did to the floor right away the nurses stuck all those sticky on my head and I was having a seizure right in front of the doctor. He was like I'll be damn and this whole time we had you as no seizure disorder I was like yeah my body like to play jokes on you doctors and your test. He just laughed sent my reports to my neuro who was as shocked as the sleep disorder doc that they had about the neuro department at the University reading to make sure it was what it was, and my sleep disorder doc did the same shared it with his practice and even sent to a friend out of town in Houston to read to make sure they were not reading it wrong. So guess what I guess I do have a seizure disorder after all. Damn and here I though I could cross that off the list.
So since those episodes started I've got more seizures test then any one I know. I've been diagnose with epilepsy and MAN OH MAN IS THERE MUCH MORE... but that's for another night!
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