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!

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.  

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!

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! 

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. 

Health Update & Exciting News!

So it has been an insane 6 weeks! Still sick, but seeing improvements each day. This last cold apparently mutated into a sinus infection, and strep throat. I also had a ruptured ovarian cyst that morning. I was up at 6am since I was unable to sleep and wanted to receive a priesthood blessing before everyone left the house for work. About 10 min. after receiving the blessing, I had sharp abdominal pains that continued despite taking ibuprofen for two hours without relief. I was pretty sure by this point what had occurred. I called the county clinic and they weren't very helpful about refilling my antibiotics or helping with pain meds. So I called my parents old off-base drs. office. Rock Run Medical in Roy, Ut. They were EXCELLENT! New patients without insurance normally are $144.00. I was seen with a blessing discount for $72.00. He gave me off brand names of meds., and prescriptions for everything so if it wasn't outrageous I could get them filled and otherwise I could buy the Equate brand.
I had been praying that the Dr. could put the pieces together of random symptoms and figure out a diagnosis. I'm still open to a 2nd opinion when I get medical insurance, but I was diagnosed with Lupus. I have both the external (though not too bad), and the internal. I had inflammation near the bottom of my rib cage. Apparently you have tiny nerves that run along your rib cage. The things I learn...hopefully to come in use someday in the future. So I picked up a Z-pac 250mg, Naproxin 550mg, and Prevacid. I have the antibodies in my bloodstream for Hashimotos disease and Lupus. If you have 1 autoimmune, you typically have others. They have to run bloodwork for each one to verify them. So maybe in the future I will have genetic bloodwork run. There is no cure for either, they just tend to treat the symptoms. There are some key things to keep an eye out for though for having lupus, since my immune function is low and small colds can transform into big problems. 


I now have an antimicrobial face mask that is washable. It has daisy's on it. I wear it when I go to church or out shopping. I talked to a sister at church who also has Lupus. She gave me a lot of ideas on how to best treat some of my symptoms with specific vitamins or essential oils. It was nice to finally have someone who could relate to me with the same diagnosis. For many years, I've kept in my medical info. around church, because most people don't know how to respond to so much medical information. I got fed up with those who would feel sorry for me ect. I'm a normal human being, and just want to live a normal life. 


Anyway....on to my EXCITING news!!! 
This Tuesday a man from SLC will be coming up to measure me for a refurbished powerchair. They have a grant that will make the cost of the chair free. If not, it will be about $250, which is pretty close to the cost of batteries. My old chair died, and we're not sure if it is the batteries not holding a charge or the motor. I'm pretty excited that I should have wheels soon and won't be stuck in the house or waiting on someone else's schedule to ride with them somewhere. It has been a very mild winter as far as snow fall, and I'd like to be able to take Ruby for more walks. 


I've only had 2 seizures in the last 6 months. They were provoked by physical activity. It's really stinky that I can't do even 25% of what I used to be able to do. I don't have stamina. There are a lot of things that I would like to be able to do in the outdoors and feel like I am limited and stuck. I was only able to sled down the hill about 6 times before I was wiped out during our first snowfall this winter. I feel like I've improved in stamina some since I've graduated, but I feel like some of that has gone down the tubes since I've been sick the last 6 weeks. I use the manual wheelchair when we go to Walmart. I'm hoping to find a replacement manual, since mine is getting rusty and won't live too much longer. It has been used greatly!
Anyway, I'm grateful for the opportunity this Tuesday to be able to be sized for a good fitting powerchair. Even if the grant isn't able to happen, and we pay for it--at least it will be affordable. I'm looking forward to more independence and freedom to go places in our neighborhood on my own. 


Since it is daylight savings time...I really need to get to bed so I can be healthy for church tomorrow. I still get facial twitching and buzzing/busy feeling abnormal brain waves. Still no confirming diagnosis or solutions, though I've figured out more patterns in their triggers. Good night!

Quilting like Crazy!

I will get pics when I locate my battery charger. I've made 2 quilts tops in the last few days. By Thursday my plan is to have finished 9 quilt tops with the help of my sister Elizabeth for our ward humanitarian stake project. haha (We are probably filling our wards quota by ourselves!!) **Evil laughs**


Since it is Sunday...I'll make a more humble note that the fabric came from donations and was pre-cut by the Relief Society.


I'm still sick. :( I sure hope there is no way to be addicted to Sudafed--considering I'm on my 3rd box of it. 3 colds in 5 weeks. I've had about 3 day intervals of somewhat health before catching another cold. I have no idea who keeps giving them to me, but if I find out~~they are dead!! (Probably not literally!)


I had to take my sister to Walmart to give her money to buy my most recent box of Sudafed. There is a limit to the quantity you can buy per month. 


Speaking of which...I can't be the only one. Since the throat lozenge aisle was severely depleted the last 2 times I've visited it. The pharmacy was out of 30mg Sudafed, so I had to get the 12 hour box. 


Washed my bedding twice now. Consuming Vitamin C & Zinc like candy. Really hoping I can beat the plague soon!