Today was our 1st dress rehearsal. We'll have another 1 tomorrow from 6-9pm. Then Thursday and Friday we will perform in the North Davis Special Needs play production called "How the West was Sung". The practice went well, and we worked out several kinks.
After we got off stage and sat back down, I felt a slight chill, then I felt really hot. I got a sick feeling in my stomach and my right arm started shaking. I made my way to the aisle where the head group lady was and notified her that I wouldn't need an ambulance but felt like I was going to have a seizure. A few minutes after I was sitting on the ground I laid down with my head cushioned on the blanket we brought and the seizure started. Thankfully the seizure didn't cycle into several seizures, but was longer than some I've had. Considering it has been 8 months since my last full blown seizure I can't really complain. I've had seizure activity and facial twitching, but I've gotten pretty good at avoiding full on seizures.
Tomorrow I'm going to try wearing my wrap around sunglasses in case the stage lights triggered my seizure. I'm really sensitive around sunlight and flourescent lights.
Otherwise the practice went well. Everyone really liked the cardboard cow and 3 chickens that we made. They looked really sharp on stage.
I think 3/4 of the people in my group have some form of a seizure disorder, since they were telling me about VNS, and how it worked for them. They were reassuring me that they have seizures too. I was still a bit embarrassed.
Tuesday, April 10, 2012
Saturday, April 7, 2012
Pride Jazzy Jet 2 HD Powerchair Update!
I received a phone call yesteday and here are some links to see what my refurbished powerchair will look like. I'm mostly excited that it will be fit to me, so more comfy.
http://www.uatpat.org/create/CReATE_Inventory_webpage.pdf
This is the link to the actual pdf website for the organization that is helping me receive the chair.
http://www.americanwheelchairs.com/specjet2.shtml
This is another link of the same chair in case you can't pull up the last pdf. It will have the captain tall back seat. They are adding a seatbelt at my request. My plan is to use it outdoors primarily. We don't have wheelchair access at my parents home currently, so it will be stored in the garage when not in use. I've never had this style of power chair, so it will be a new adventure getting acquainted with it. I'm soo excited for Easter Sunday tomorrow!
http://www.uatpat.org/create/CReATE_Inventory_webpage.pdf
This is the link to the actual pdf website for the organization that is helping me receive the chair.
http://www.americanwheelchairs.com/specjet2.shtml
This is another link of the same chair in case you can't pull up the last pdf. It will have the captain tall back seat. They are adding a seatbelt at my request. My plan is to use it outdoors primarily. We don't have wheelchair access at my parents home currently, so it will be stored in the garage when not in use. I've never had this style of power chair, so it will be a new adventure getting acquainted with it. I'm soo excited for Easter Sunday tomorrow!
Sunday, April 1, 2012
General Conference!
I decided to try out a new font for a change. I enjoyed General Conference! There were a few talks that stood out to me in particular. I can't wait to read them again in the Ensign or online. I got a lot of planting done during the last session. I had little peat pellets that I soaked in water and put in little bathroom dixie cups. I planted a lot of yellow squash, green zucchini, and some cantaloupe. The marigolds, basil, climbing flower Nastuarium, and tomatoes grew and I transferred them to a raised box of dirt. I had to cover them with plastic bags and weight them down with water jugs, since we were supposed to get some snow on Sunday. It turned out that some fell, but nothing stuck, let alone accumulated.
I enjoyed a soak in the hot tub last night even though the water was not very hot. The power went out recently and the tub went into econo mode, so the water was a mere 83 degrees. Something didn't go right with the new bromine tablets since I got hives even after showering. I found a clever recipe online using baking soda and water to make a paste. My sister gave me a nice coat over which actually worked!! I think probably even better than calamine lotion for the chicken pox! It is our neighbor's hot tub and we are house sitting for them. So not sure how to fix the hot tub.
We had eggs, bacon, and bunny rolls. Rolls that were shaped to look like bunnies. It was fun!
I finally received my wedding photos from 2 years and 4 months ago. They arrived on Saturday. I've got them uploaded to facebook, but will be working on updating them up here soon. This week is Spring Break, so we are probably going on day trips most of the week. There are not many things locally you can go visit without paying about $5 a person. It will take some creativity!
I'm trying to stay positive and level-headed about my abilities. I must have a lot more to learn, since no resolution for my health has been found. I've recently learned about PET scans, genetics, and spinal taps. The 3rd sounds painful to me, but the PET scan can distinguish neurological conditions that an EEG can't. So I'm really interested in having a PET scan done in the near future. My doctor recommended that I go to the Mayo clinic in Arizona. I'm just not sure I'm ready to go that far in debt right now. If I get disability or we are more financially settled I think I'd be more open to it. It's hard to find those few level headed doctors, and I think that is part of my concern. University of Utah is supposedly a really good hospital and we didn't have much success there. Other than the fact that I have very unique results they've never seen before. So you can see my hesitation to travel 14+ hours and spend lots of $$. I need to get to bed. I have an evening sewing class after our day trip adventures. I need to find a balance between what we do, so I don't trigger a cycle of seizures. I'm hoping to come up to Idaho when we drop off my sister at school for Spring. I'd really rather not be stuck inpatient due to a lack of seizure control. If that is part of the plan and would help process paperwork faster for medical help, I'm willing to be patient. Emphasis on the "IF". I'm looking forward to the things we are planning this week!
I enjoyed a soak in the hot tub last night even though the water was not very hot. The power went out recently and the tub went into econo mode, so the water was a mere 83 degrees. Something didn't go right with the new bromine tablets since I got hives even after showering. I found a clever recipe online using baking soda and water to make a paste. My sister gave me a nice coat over which actually worked!! I think probably even better than calamine lotion for the chicken pox! It is our neighbor's hot tub and we are house sitting for them. So not sure how to fix the hot tub.
We had eggs, bacon, and bunny rolls. Rolls that were shaped to look like bunnies. It was fun!
I finally received my wedding photos from 2 years and 4 months ago. They arrived on Saturday. I've got them uploaded to facebook, but will be working on updating them up here soon. This week is Spring Break, so we are probably going on day trips most of the week. There are not many things locally you can go visit without paying about $5 a person. It will take some creativity!
I'm trying to stay positive and level-headed about my abilities. I must have a lot more to learn, since no resolution for my health has been found. I've recently learned about PET scans, genetics, and spinal taps. The 3rd sounds painful to me, but the PET scan can distinguish neurological conditions that an EEG can't. So I'm really interested in having a PET scan done in the near future. My doctor recommended that I go to the Mayo clinic in Arizona. I'm just not sure I'm ready to go that far in debt right now. If I get disability or we are more financially settled I think I'd be more open to it. It's hard to find those few level headed doctors, and I think that is part of my concern. University of Utah is supposedly a really good hospital and we didn't have much success there. Other than the fact that I have very unique results they've never seen before. So you can see my hesitation to travel 14+ hours and spend lots of $$. I need to get to bed. I have an evening sewing class after our day trip adventures. I need to find a balance between what we do, so I don't trigger a cycle of seizures. I'm hoping to come up to Idaho when we drop off my sister at school for Spring. I'd really rather not be stuck inpatient due to a lack of seizure control. If that is part of the plan and would help process paperwork faster for medical help, I'm willing to be patient. Emphasis on the "IF". I'm looking forward to the things we are planning this week!
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