Crystal11
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Hello everyone. I am back from speaking to the Senate, House of Representatives, as well as Congresspersons about SSPs (Support Service Providers) that work with those of us that are deaf-blind, low-vision and hearing impaired or totally deafblind.
I had a good time and it was a busy busy week. Last year at DBYAA (Deafblind Young Adults in Action) we did meet President Obama in the Oval Office and did have interviews and discussions about those topics/policies. It was awesome and interesting at the same time. Walking around with Secret Service, going through insane security etc.
I did have something that I noticed while there. Usually we have a "home-base" in the cafeteria. Well the day before, I had a seizure while sitting in the living room/common area in the dorm I stayed at. I was fine after wards but was treated as if I was in a serious situation. The first time it happened I understood why staff, students and other members of DBYAA were concerned and checked up on me. A few days later, we had a meeting with the FCC about our topics and technology issues for people that are deafblind. That went fine but I started feeling so sick- I knew that it was an aura and that I needed to leave. So I told my interpreters and my SSP that I need to sit out in the hallway. A Japanese film company were filming and I didn't want people to look at me or possibly have part of it filmed! I doubt they would just sit there and stare at me.. but I just don't like anyone at all to be with me- I know that everything will be okay. My SSP stayed with me no matter what and that was fine.
Well the day or two after that, I got the same comment. "Make sure you eat Crystal." "Make sure you keep your blood sugar up." "Make sure you sleep well and rest." "We worry you will have another seizure and want to make sure your okay." I appreciated the concern but people including my interpreters and SSPs and group members were talking to me like a child. I am an adult and understand what I need to take care of myself.
Then my friend and myself were talking about my seizures and I realized that I was basically isolated and told I had no meetings to attend. So I sat there in the cafe of both the Senate and House side of the Capitol doing absolutely nothing- just sitting there for 3-5hrs as everyone else had meetings schedule with representatives. I cried for most of the day once I realized that his was probably done intentionally but not mentioned to me.
I felt very isolated and hurt my feelings, all bec of E.
On the way up to D.C. from Austin TX, we rode 12-13hrs a day for 3 days in the van. So by the time I got there, I had to change time by an hour forward, then try and sleep (which didn't happen) and then get started on these intense meetings. I knew it would be hard, but after these triggers were observed and understood, I tried my best to get things under control.
We were gone 11 days and I had two seizures- I felt embarrassed, upset and felt that I interrupted things and made people worry etc.
Anyway I had a seizure on the way home. We were stopped at a gas station to check the tire pressure. Amy said I didn't look good at all- but I needed to take my guide dog out to go to the bathroom a little ways away from the van. Amy followed me just to make sure help was right there. I sat on the ground from dizziness and sickness I felt. I just said "Screw it, I don't care who sees me I don't feel good." Umbro went to the bathroom on the grass and I was headed back to the van and that is all I remember. Amy and the other SSP and an interpreter were holding me from walking away or doing something dangerous. They described it the best they could to me, and it made me upset. Someone put the seat belt over me and it was night time all of a sudden. The post-ictal phase really had a hold of me strongly. I was out of it for a half hour! Amy was trying to make me eat and drink but I was just too tired. I felt like I was electrocuted and drowned then came back to life again- strange description of my complex partials!
On our last day of traveling, we stayed in a hotel and I still felt out of it and tired and weak in my hands- kinda weird..anyways Amy ordered food service and made sure I ate. She was worried that I would have a seizure on the train on the way home- which I didn't. yay.
Ashle my SSP stayed with me in the same room, and made sure I was okay. She said my balance was off still about an hour later. Ashle mentioned to her friend that I had a seizure but out loud in the hotel lobby! So everyone was worried that I would wake up to a seizure or in a confused state. I woke up and was a little tired but was okay and made it home safe with no other seizures.
Lamictal and Keppra XR have seemed to work well- but when they are triggered by something that is when its break-through seizure time..sucks.
I am home now adjusting to the time change and new sleeping schedule.
Adjusting to time change was a major trigger for me- and lack of sleep.
Ok such a long article. Just thought that I would put some of my concerns out there for everyone to think about and to give feedback if they want.
Everyone take care
Crystal
I had a good time and it was a busy busy week. Last year at DBYAA (Deafblind Young Adults in Action) we did meet President Obama in the Oval Office and did have interviews and discussions about those topics/policies. It was awesome and interesting at the same time. Walking around with Secret Service, going through insane security etc.
I did have something that I noticed while there. Usually we have a "home-base" in the cafeteria. Well the day before, I had a seizure while sitting in the living room/common area in the dorm I stayed at. I was fine after wards but was treated as if I was in a serious situation. The first time it happened I understood why staff, students and other members of DBYAA were concerned and checked up on me. A few days later, we had a meeting with the FCC about our topics and technology issues for people that are deafblind. That went fine but I started feeling so sick- I knew that it was an aura and that I needed to leave. So I told my interpreters and my SSP that I need to sit out in the hallway. A Japanese film company were filming and I didn't want people to look at me or possibly have part of it filmed! I doubt they would just sit there and stare at me.. but I just don't like anyone at all to be with me- I know that everything will be okay. My SSP stayed with me no matter what and that was fine.
Well the day or two after that, I got the same comment. "Make sure you eat Crystal." "Make sure you keep your blood sugar up." "Make sure you sleep well and rest." "We worry you will have another seizure and want to make sure your okay." I appreciated the concern but people including my interpreters and SSPs and group members were talking to me like a child. I am an adult and understand what I need to take care of myself.
Then my friend and myself were talking about my seizures and I realized that I was basically isolated and told I had no meetings to attend. So I sat there in the cafe of both the Senate and House side of the Capitol doing absolutely nothing- just sitting there for 3-5hrs as everyone else had meetings schedule with representatives. I cried for most of the day once I realized that his was probably done intentionally but not mentioned to me.
I felt very isolated and hurt my feelings, all bec of E.
On the way up to D.C. from Austin TX, we rode 12-13hrs a day for 3 days in the van. So by the time I got there, I had to change time by an hour forward, then try and sleep (which didn't happen) and then get started on these intense meetings. I knew it would be hard, but after these triggers were observed and understood, I tried my best to get things under control.
We were gone 11 days and I had two seizures- I felt embarrassed, upset and felt that I interrupted things and made people worry etc.
Anyway I had a seizure on the way home. We were stopped at a gas station to check the tire pressure. Amy said I didn't look good at all- but I needed to take my guide dog out to go to the bathroom a little ways away from the van. Amy followed me just to make sure help was right there. I sat on the ground from dizziness and sickness I felt. I just said "Screw it, I don't care who sees me I don't feel good." Umbro went to the bathroom on the grass and I was headed back to the van and that is all I remember. Amy and the other SSP and an interpreter were holding me from walking away or doing something dangerous. They described it the best they could to me, and it made me upset. Someone put the seat belt over me and it was night time all of a sudden. The post-ictal phase really had a hold of me strongly. I was out of it for a half hour! Amy was trying to make me eat and drink but I was just too tired. I felt like I was electrocuted and drowned then came back to life again- strange description of my complex partials!
On our last day of traveling, we stayed in a hotel and I still felt out of it and tired and weak in my hands- kinda weird..anyways Amy ordered food service and made sure I ate. She was worried that I would have a seizure on the train on the way home- which I didn't. yay.
Ashle my SSP stayed with me in the same room, and made sure I was okay. She said my balance was off still about an hour later. Ashle mentioned to her friend that I had a seizure but out loud in the hotel lobby! So everyone was worried that I would wake up to a seizure or in a confused state. I woke up and was a little tired but was okay and made it home safe with no other seizures.
Lamictal and Keppra XR have seemed to work well- but when they are triggered by something that is when its break-through seizure time..sucks.
I am home now adjusting to the time change and new sleeping schedule.
Adjusting to time change was a major trigger for me- and lack of sleep.
Ok such a long article. Just thought that I would put some of my concerns out there for everyone to think about and to give feedback if they want.
Everyone take care
Crystal
