We'll, I finally got in to see a doctor this last Friday. I called a lot of places around town and kept getting passing around from phone office to office. So then I started doing searches for local doctors offices to my zip code. The amazing part is that they were able to fit me in about 2 hours later. I have paperwork from the state office that I needed to get filled out regarding my work status. The workforce services dept. will pay for the appt., so it was important to get in soon as the paperwork is time sensitive.
So I get in, and the Physicians Assistant goes through the routine questions. She says she has no problem filling out my paperwork, but she has a suggestion of a better idea. She said she was willing to not bill the appt. today and not get paid in order for me to get in with the neurologist that works in their office next week. WOW!!! I just happened to pick the Family Practice office that also has a Neurologist in its staff. I had brought my 4 years of medical records in which made up about 4 inches of papers. They happily copies them all and even flagged them as I had according to tests, EEG's, Labs, ect. So I'm waiting till Monday to figure out what the plan will be, but since the State will pay for whatever tests are necessary to determine disability, the doctor is hoping I can get additional testing done and medical help through the forms as long as they file the appropriate papers, the forms will pay for everything. Next week is sure a LOT sooner than the 14 month wait list I've been sitting on at the County clinic for a neurologist. My dream is to be able to go to the Mayo clinic either in Rochester or Arizona, but I am grateful that some things are working out in the meantime.
Sunday, September 16, 2012
Saturday, June 23, 2012
A Dawgs life!
It has been blazing hot here, I think summer has official arrived! I've been more active then I have been in a while, but also feel more lazy because the heat really sucks the life out of me.
I've been without a power chair for the last 2 weeks because the Pronto was returned and the group in SLC I got it from thinks that they have a better chair for me and the outdoors. It didn't have any shock absorbency so it hurt my back with the rods in my back when I used it. The new one is a Jazzy. I like Jazzy's better since you can go farther on a full charge mileage wise. It's been a bum deal though in the waiting time since I can't walk Ruby in the evenings.
Monday-Wed. we are going up to Crystal Hot Springs camping as a family. I'm hoping the weather is not as hot as the weatherman is predicting, but am excited to try out our new tent and camping equipment.
I finally got a calling at church! Partly due to my sarcasm and initiative, but I'm official. I am the Ward Website Administrator. I work with keeping the ward calendar update, and the directory. I'm grateful for this opportunity and especially glad that this bishop didn't play the whole..."you are sick/delapitated take it easy routine." I'm obviously not terminal whatever is going on with my body, or I would have already kicked the bucket. *Step off my soapbox*
We purchased fishing poles and licenses. We are learning to FISH! The fish still scare me, but I must say it was still fun to catch the 2 I've caught so far!
Rainbow Trout!
Last week I spent up at Bear Lake, Ideal Beach in Garden City, UT. My relatives have a timeshare and we joined them up there for some fun.
I went through the Minnetonka Cave, which was a miracle I made it through and out safely. It was not a hilly smooth path as I had read online, but 888 stairs and up and down the entire cave. An aerobic workout for sure. It was neat to see the stalactites and stalagmites.
$7 admission for Adults They only accept cash. NO Debit/credit cards. It is just a shack with YSA aged tour guides.
I've been without a power chair for the last 2 weeks because the Pronto was returned and the group in SLC I got it from thinks that they have a better chair for me and the outdoors. It didn't have any shock absorbency so it hurt my back with the rods in my back when I used it. The new one is a Jazzy. I like Jazzy's better since you can go farther on a full charge mileage wise. It's been a bum deal though in the waiting time since I can't walk Ruby in the evenings.
Monday-Wed. we are going up to Crystal Hot Springs camping as a family. I'm hoping the weather is not as hot as the weatherman is predicting, but am excited to try out our new tent and camping equipment.
I finally got a calling at church! Partly due to my sarcasm and initiative, but I'm official. I am the Ward Website Administrator. I work with keeping the ward calendar update, and the directory. I'm grateful for this opportunity and especially glad that this bishop didn't play the whole..."you are sick/delapitated take it easy routine." I'm obviously not terminal whatever is going on with my body, or I would have already kicked the bucket. *Step off my soapbox*
We purchased fishing poles and licenses. We are learning to FISH! The fish still scare me, but I must say it was still fun to catch the 2 I've caught so far!
Last week I spent up at Bear Lake, Ideal Beach in Garden City, UT. My relatives have a timeshare and we joined them up there for some fun.
I went through the Minnetonka Cave, which was a miracle I made it through and out safely. It was not a hilly smooth path as I had read online, but 888 stairs and up and down the entire cave. An aerobic workout for sure. It was neat to see the stalactites and stalagmites.
Saturday, May 5, 2012
Amazing Race & Seizure
This evening we participated in a fundraiser for the young women of our ward. It was an "Amazing Race." We were told repeatedly that this was an "All abilities", young or old could participate. I have to say I don't know what planet they were contriving this info. from.
The actual concept was a fun scavenger hunt, but there was a problem with their code. We got the math correct, counted all the correct rows of chairs in the amphitheatre, but all 5 couples of us couldn't figure it out. Someone called on a "Help" # we were given and we headed to the 2nd place which was the Aquatics Center. Inside is where we should have taken the wheelchair inside, but didn't realize it. The alternate option for me was to walk around the perimeter of this humongous basketball court area, vs. get 20 free throws in the basket. Even in a wheelchair, there's no way I could have made it around the perimeter. I opted just to shoot hoops. We only made it to 8, before we were the only couple left. They told us to aim for 10, and after we got 9, a guy made the last basket for us. (I think the last basketball shooting I've done was wheelchair basketball on campus with my power chair.)
Anyway, we are apparently great at getting the ball in the box and hoop area, but not at through the net.
The next location was a park. Kind of tricky figuring out who is a parent with their kids at the park vs. a young women or leader I don't really know. We finally found the person and Antonio recited the 5 Great Lakes. The next option was to go to the park by the church. There were 2 games. Ours was to fill up a 5 gallon bucket with cups of water back and forth. The other was to hit cups off a table by throwing balls.
The last was to stack 11 cups in a certain way to be able to pour a pitcher of water on top of them and it become a waterfall. Pretty cool to watch, but not enough time to do it, since we came in last.
The experience was neat, but I was really not feeling the best today to make it my greatest experience.
I had taken 660mg of Naproxin just to make it to the Baked Potato dinner and activity. I came in my wheelchair, which I usually don't use at church. I spent most of the day in bed. I'm not contagious, but have endometriosis and it has been 4 years since my last laparoscopy, so I was in a great deal of pain.
I came in so they could announce the winners. My face started twitching, so I knew a seizure was in the near future.
I couldn't stand for the amount of time they were taking to figure out the final winner, so I sat on the floor against the wall. I just felt incredibly drained, and all the energy run out of me. Completely wasted, my head felt funny like before a seizure. No pain, just not normal. I laid down on the carpet, and the seizure started shortly after I laid down. It seemed like it was cycling slower and longer than some of my more recent seizures. I'm just grateful that I somehow tune a lot of stuff out during seizures, since it was the first full seizure I've had at a ward function. I prefer not to be the center of attention. This sounds like an impossible wish, but it'd be awesome for everyone to get amnesia before tomorrow so I don't have to hear 50 bigillion people ask if I'm alright. Clearly...still alive and kicking.
On a side note just before we got our clue cards, they said that if anyone had a broken arm, leg ect. they could use the optional clue card. The funny guy at our table smacked his elbow into the table, and said shucks...didn't break. We'll the ironic part of all this, is that his chair busted. Hahahaha!! It was hilarious. It was a slow bend of the metal chair and he slowly sunk to the ground. He was beat red, looked shocked, and said, "I guess I'll be sitting on the ground." It was hilarious! Their name is the Rice family. I hope we get to know them better--because they are a real hoot!
The actual concept was a fun scavenger hunt, but there was a problem with their code. We got the math correct, counted all the correct rows of chairs in the amphitheatre, but all 5 couples of us couldn't figure it out. Someone called on a "Help" # we were given and we headed to the 2nd place which was the Aquatics Center. Inside is where we should have taken the wheelchair inside, but didn't realize it. The alternate option for me was to walk around the perimeter of this humongous basketball court area, vs. get 20 free throws in the basket. Even in a wheelchair, there's no way I could have made it around the perimeter. I opted just to shoot hoops. We only made it to 8, before we were the only couple left. They told us to aim for 10, and after we got 9, a guy made the last basket for us. (I think the last basketball shooting I've done was wheelchair basketball on campus with my power chair.)
Anyway, we are apparently great at getting the ball in the box and hoop area, but not at through the net.
The next location was a park. Kind of tricky figuring out who is a parent with their kids at the park vs. a young women or leader I don't really know. We finally found the person and Antonio recited the 5 Great Lakes. The next option was to go to the park by the church. There were 2 games. Ours was to fill up a 5 gallon bucket with cups of water back and forth. The other was to hit cups off a table by throwing balls.
The last was to stack 11 cups in a certain way to be able to pour a pitcher of water on top of them and it become a waterfall. Pretty cool to watch, but not enough time to do it, since we came in last.
The experience was neat, but I was really not feeling the best today to make it my greatest experience.
I had taken 660mg of Naproxin just to make it to the Baked Potato dinner and activity. I came in my wheelchair, which I usually don't use at church. I spent most of the day in bed. I'm not contagious, but have endometriosis and it has been 4 years since my last laparoscopy, so I was in a great deal of pain.
I came in so they could announce the winners. My face started twitching, so I knew a seizure was in the near future.
I couldn't stand for the amount of time they were taking to figure out the final winner, so I sat on the floor against the wall. I just felt incredibly drained, and all the energy run out of me. Completely wasted, my head felt funny like before a seizure. No pain, just not normal. I laid down on the carpet, and the seizure started shortly after I laid down. It seemed like it was cycling slower and longer than some of my more recent seizures. I'm just grateful that I somehow tune a lot of stuff out during seizures, since it was the first full seizure I've had at a ward function. I prefer not to be the center of attention. This sounds like an impossible wish, but it'd be awesome for everyone to get amnesia before tomorrow so I don't have to hear 50 bigillion people ask if I'm alright. Clearly...still alive and kicking.
On a side note just before we got our clue cards, they said that if anyone had a broken arm, leg ect. they could use the optional clue card. The funny guy at our table smacked his elbow into the table, and said shucks...didn't break. We'll the ironic part of all this, is that his chair busted. Hahahaha!! It was hilarious. It was a slow bend of the metal chair and he slowly sunk to the ground. He was beat red, looked shocked, and said, "I guess I'll be sitting on the ground." It was hilarious! Their name is the Rice family. I hope we get to know them better--because they are a real hoot!
Tuesday, April 10, 2012
Seizure at Dress Rehearsal
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.
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.
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!
Wednesday, March 28, 2012
Brick Wall
I'm frustrated with the state. I applied for their PCN medical program. There is only 1 time per year you can enroll. They added what we pay for rent into what we receive as income. They called it "inkind" income. I think they misunderstand. So we are $87 over the allowed limit to received state medical.
I saw a doctor today to fill out paperwork for applying for disability. I can't work many hours with my seizure disorder and fatigue. I wouldn't last a week working the typical 7/8am -4pm job. When I wake up early I trigger seizures. The doctor was very helpful. I feel like I have a chance with the details he was able to provide the state on my form. My social worker was notified about starting the application process, I just have to wait around for her to call me. I've submitted all my portion of the documents.
I've found more success controlling my seizures by sleeping in until my body naturally wakes up whether that be 10 or 11 am. Then I use my wheelchair or a stores power chair scooter when we are about. It is frustrating to me, because many people are nervous to be around me. So I feel like I am restricted in what I can do without having my mom or husband around me to look out for me. I can't wait for Ruby to be fully trained so I can go wherever I want. She has been in heat for the last 3 weeks, so I've not enjoyed her companionship. When I am stressed out, she just looks at me with her big brown eyes. She stays close and it is almost as if she can feel that I'm out of sorts.
I'm still waiting to hear back from the CreAte group in Salt Lake City about receiving my powerchair. I've heard that Jazzy's are good for speed and distance. They recommended that I get a Pronto. I just hope whatever I get that it can go far on a full charge. I don't want to be stuck somewhere without power. I would get another Quickie, since it was good on distance per charge, but it made me really nervous at its ability to tip easily. That sensation scared me. One time I hit the crosswalk a little too quickly and everything on my lap flew through the air and landed on the street while my chair did a wheelie while terrifying me. I was a bit mortified as well. I avoided that crossing for several weeks. I was headed across the street to the dorms to visit my sister. Also, the last time I traveled without buckling my backpack in with me.
Our wedding photos are supposedly in the mail. I guess we'll see if we receive them near the end of the week. It has been 2 years of waiting for them. I hope our photographer has really sent them.
I saw a doctor today to fill out paperwork for applying for disability. I can't work many hours with my seizure disorder and fatigue. I wouldn't last a week working the typical 7/8am -4pm job. When I wake up early I trigger seizures. The doctor was very helpful. I feel like I have a chance with the details he was able to provide the state on my form. My social worker was notified about starting the application process, I just have to wait around for her to call me. I've submitted all my portion of the documents.
I've found more success controlling my seizures by sleeping in until my body naturally wakes up whether that be 10 or 11 am. Then I use my wheelchair or a stores power chair scooter when we are about. It is frustrating to me, because many people are nervous to be around me. So I feel like I am restricted in what I can do without having my mom or husband around me to look out for me. I can't wait for Ruby to be fully trained so I can go wherever I want. She has been in heat for the last 3 weeks, so I've not enjoyed her companionship. When I am stressed out, she just looks at me with her big brown eyes. She stays close and it is almost as if she can feel that I'm out of sorts.
I'm still waiting to hear back from the CreAte group in Salt Lake City about receiving my powerchair. I've heard that Jazzy's are good for speed and distance. They recommended that I get a Pronto. I just hope whatever I get that it can go far on a full charge. I don't want to be stuck somewhere without power. I would get another Quickie, since it was good on distance per charge, but it made me really nervous at its ability to tip easily. That sensation scared me. One time I hit the crosswalk a little too quickly and everything on my lap flew through the air and landed on the street while my chair did a wheelie while terrifying me. I was a bit mortified as well. I avoided that crossing for several weeks. I was headed across the street to the dorms to visit my sister. Also, the last time I traveled without buckling my backpack in with me.
Our wedding photos are supposedly in the mail. I guess we'll see if we receive them near the end of the week. It has been 2 years of waiting for them. I hope our photographer has really sent them.
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