I'm not sure where the time has gone...3 months since my last post and a LOT has happened. It's December, and will be Christmas soon. I've been kind of a Scrooge or Grinch lately. I'm really hoping I can turn that around and get into the Christmas spirit. I've been listening to Christmas songs since before Thanksgiving, but just overall, I've been feeling really snappy.
A brief recap...October I started taking Tegretol for my seizures. I had been doing fairly well, but by the end of October my seizures were getting out of hand. I was given a new prescription for Ativan. I honestly didn't know this was available in pill format. I had always had it jammed into my arm via I.V. Ativan can only be used extremely sparingly so it doesn't stop working. The doctor prescribed it in case I was having a really hard day of back to back seizures clustering.
My mom went to Arkansas for 1 week to visit her granddaughter and family. This week was a especially hard one. Managing my moms foster son, getting dinner on the table for everyone, it was a stressful week. I had 2 seizures just a day apart. The 2nd one was at a Super Saturday craft day. It was a longer lasting seizure and I felt really lousy afterwards. (Kind of like when you hang upside down.) Then it turned into a migraine. I spent from 3-10pm in bed. Came out of something to eat, and went back to bed.
On a sidenote--Ruby has been doing FANTASTIC at alerting and responding to my seizures. The 1st alert was in Relief Society. She stood up and sat on me and pushed her body up against me to keep me from leaving my seat. I didn't listen to her and was pushing back to get out of the 2nd row. I ended up hitting the ground by the door where I seized. I was disappointed that I didn't make it out the door, since I didn't want to be spotlighted. Another lady made a good point though, the Primary is near the door, so it's probably a good idea I didn't make it out.
The 2nd time Ruby had 2 paws behind me and 2 in front guarding me. Apparently she wouldn't let anyone near me until she recognized someone she knew.
Aside from the stressful week of Mom being gone, we never figured out any connections or triggers. I was agitated, snappy, foggy and the list was long. I was scared to try the meds, but with much prayer I felt I should give it a try. I started at 200mg which is the initial adult starting dose. By day 3 I was lethargic, had hives and my face was swollen. So the doctor back off on the dose and I was taking 1/2 of a 1/2 child's dose. So a chewable table cut in 1/2 equalling 50 mg 1 time a day. I did this for several weeks. Then it became 75mg daily. Then up to 100 mg daily. I spent 2 weeks at that dose. Then moved up to 100 mg AM, and 50 mg PM. A slow process, but I noticed a HUGE difference in how I was feeling. I still had seizures, but I could push myself farther before having a seizure. I was starting to feel like this was the answer. I moved up to 100mg AM, and 100 mg PM. Since I had surpassed day 3 when I had experienced the problems the 1st try, I was feeling on top of the world so to speak. I currently feel down in the gutter. Last Thursday, so (Day 5), I got a rash on my face. I also got a cold, so I wasn't quick to blame the medicine. By Friday it was more like hives on my face, so I stopped taking the Tegretol and hunkered down for the cold I had. It is currently Monday, and those blasted hives are still there. I've been putting benadryl cream on my face daily. Hoping to feel better soon.
I got my letter for SSID a few days ago. They denied to me for SSID. They said I didn't have enough recent seizure workups within the last year paperwork wise. They said I didn't have medical records showing anti-seizure drugs not working. (This one ticked me off a bit...)When I was admitted to Madison Hospital, they had plenty of records there of medications not stopping the seizures, and making them happen more often. They switched me from Zonegran to Topamax to Depakote all within 1 week. Then sent me by ambulance to SLC with a nervous paramedic because the Ativan had stopped working while I was in-patient there. Ativan is a short-term drug. The more it is used, the less effective it is. (A bum deal, since I would want to take it daily because it works, and has no side effects.)
Now that I'm off the soapbox...
I will be going back to the University of Utah hospital sometime next year. Since we are flying out of town, I was leary to get the referral rolling in case they had an appt. while we were out of town. So when we come home in January, I'll get the referral going. I have mixed feelings about going. I feel from a blessing I had that I need to go back and have an open mind. But, it is hard to erase the bad experience I had being there, the frustration and the lack of answers they were able to give me. With that said, I'm trying to keep an open and positive outlook/perspective.
December 21-Jan. 3rd we are spending in California. My mother-in-law bought our tickets to fly out. We are taking Ruby. It will be her 1st time flying. Hopefully, she doesn't mind it. Thankfully we have a direct flight and no layovers just in case it isn't a pleasant experience.
This week I need to get her ID made, so that traveling is easier. Hopefully my doctor will get the letter/prescription for Ruby written soon. I have one, but it is a little outdated. I got it when Ruby was 6 weeks old.
It's late, so I'm going to call it a night.
Monday, December 3, 2012
Sunday, September 16, 2012
Tender Blessings Disguised as Luck
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.
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.
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.
Saturday, March 10, 2012
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!
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!
Sunday, February 26, 2012
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!
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!
Saturday, February 4, 2012
Sick :(
Wow...I'm kind of wondering if this is like the plague. I've been sick since Sunday. I started feeling sick after Sacrament meeting, and actually was wondering if I was going to have a seizure. I sat on the couch in the foyer, and ended up consuming the entire couch as I progressively felt worse. When Mom finished up her substitute library duties she drove me home. We all had piled in the car, so we didn't have a 2nd car at church. Not that I could've driven anyways.
Monday, Tues., and Wed. I felt like death. I went into the County clinic on Tues. morning to get an appt. When I went back in later in the afternoon for some odd reason, I didn't even have a sniffle. I don't know if the cold air helped my cough. The Dr. said she felt I had an upper respiratory infection and it was probably viral. She said to call back on Monday if I wasn't improving.
Thursday came and I decided call in Friday morning if I still felt like death. I called Friday, and though my Dr. wasn't there, someone else put the prescription in for me at Walmart. I got Arithromycin 250 mg, Z-Pack. Within 30 min. I felt considerably better after taking it. But to be sure it wasn't just the placebo effect, I continued to take extra strength sudafed 120 mg (apparently you can get the good stuff over the counter, but behind the counter!).
I slept SOOO WELL!!! I can't believe how much quality sleep I got.
I'm feeling progressively better each day, though I'm still short of breath. Can see the light at the end of the tunnel. It is unfortunately going around the family, so I just pray I don't get it back--since my immune system is in the gutter.
Monday, Tues., and Wed. I felt like death. I went into the County clinic on Tues. morning to get an appt. When I went back in later in the afternoon for some odd reason, I didn't even have a sniffle. I don't know if the cold air helped my cough. The Dr. said she felt I had an upper respiratory infection and it was probably viral. She said to call back on Monday if I wasn't improving.
Thursday came and I decided call in Friday morning if I still felt like death. I called Friday, and though my Dr. wasn't there, someone else put the prescription in for me at Walmart. I got Arithromycin 250 mg, Z-Pack. Within 30 min. I felt considerably better after taking it. But to be sure it wasn't just the placebo effect, I continued to take extra strength sudafed 120 mg (apparently you can get the good stuff over the counter, but behind the counter!).
I slept SOOO WELL!!! I can't believe how much quality sleep I got.
I'm feeling progressively better each day, though I'm still short of breath. Can see the light at the end of the tunnel. It is unfortunately going around the family, so I just pray I don't get it back--since my immune system is in the gutter.
Saturday, January 28, 2012
Bernina 330!
Here is my new baby--I finally unveiled her yesterday afternoon! I have a lesson on Feb. 3rd to learn how to use all her nifty gadgets.
With the camera flash on.
All the fun stitches!
Camera flash off so you can see the digital screen. Quite a powerful light above the sewing foot!
Thursday, January 19, 2012
New Favorite Song! 1,000 Miles
http://www.youtube.com/watch?v=Cwkej79U3ek
I love the piano music with this song, and feel that it is very inspiring!
This is a video clip that one of the old elders from my mission posted on facebook. It is about the sanctity of the Priesthood. It is a powerful video. I hope you enjoy it!
https://lds.org/youth/video/sanctify-yourselves?lang=eng&cid=facebook-shared
I love the piano music with this song, and feel that it is very inspiring!
This is a video clip that one of the old elders from my mission posted on facebook. It is about the sanctity of the Priesthood. It is a powerful video. I hope you enjoy it!
https://lds.org/youth/video/sanctify-yourselves?lang=eng&cid=facebook-shared
Wednesday, January 18, 2012
Homemade Dog Shampoo!
I decided to document the making of dog shampoo. I've made it in the past, but decided to try a different soap this time.
2 cups Dawn Dish Soap
2 cups Apple Cider Vinegar
2 cups H20 (water)
3 oz. of Glycerin (Can be found by the hydrogen peroxide @ Walmart)
Last time I used Ivory dish soap, but the smell irritated my eyes, so I decided to try the Dawn this time. The original recipe calls for 4 oz. of Glycerin, but I'm giving 3 oz. a try, since it enables me to get 2 batches out of 1 bottle.
All of the bottles were filled except the Ivory bottle (from an old batch, and the bottle to the right of the Ivory bottle. It is only about 1/4 full. The sweet relish bottle has a good suction top (anti squeeze too much) lid so it works well. The Tressemme bottle held a lot, so when we get settled in a more permanent house I will invest in stockpiling dog shampoo.
2 cups Dawn Dish Soap
2 cups Apple Cider Vinegar
2 cups H20 (water)
3 oz. of Glycerin (Can be found by the hydrogen peroxide @ Walmart)
Last time I used Ivory dish soap, but the smell irritated my eyes, so I decided to try the Dawn this time. The original recipe calls for 4 oz. of Glycerin, but I'm giving 3 oz. a try, since it enables me to get 2 batches out of 1 bottle.
Monday, January 9, 2012
Day 8 I can't believe I've made it this far!
It has been a busy week! I've been to 3 bridal showers which were kind of awkward by the fact that I couldn't eat anything there. I'm glad I was able to support my friends. I have quite a stockpile of precious delicacies which I hope in the future to be able to partake of. The last bridal shower had creme puffs. They've been properly wrapped in saran wrap and are awaiting me when I'm available!
Saturday I helped unload a trailer full of firewood. It snowed 2-3 inches Friday night, and we forgot to cover the trailer, so it took twice as long to dust the snow off of each hunk of wood. Then throw it in the wheelbarrow and haul it to the wood pile. I only dusted and chucked wood into the wheelbarrow, but it was exhausting enough to waste me for the remainder of the day. I've found very little supply of energy on this diet of primarily fruits and veggies w/a little helping of meat.
Later in the day for my part-time job, we took "J" to the Kiwanis Park and let him go sledding. I made it down about 5 times, mostly because I love sledding but the walk back up the hill was tiring. I munched on my portable salad and wished that I could call it a day and go to bed. I think Saturday was the most worn out that I have been in a long number of months.
I've lost about 5 pounds. Losing weight was not my goal, but it has been noted. I'm praying that my lab results are in by my appt. on Thursday so that I can hopefully start adding food choices back into my diet. I'm on the fence as to what should come first, corn, butter, potatoes, or pasta. I think it would be wishful to ask for pasta first, but popcorn would be absolutely Amazing! I'm mostly tired of a lack of flavor in my foods. I'm not allowed to add anything except salt/pepper. I'm not fond of quinoa! I love and savor over buckwheat--though when I'm frustrated I call it "Buttwheat". Even the gagging liver cleanse has become manageable. Unsweetened almond milk went from bearable to a delicacy. I haven't craved sugar so long as I haven't been face to face with it. I think at this point it is more of a mind dwelling than an actual craving. My mind remembers how good things were and can even just about bring the smell and taste of things. Interesting how the brain works! I'm not sure it is a stress-free diet on my body. I've had speech interruptions , facial twitching, left eye twitching and buzzing/static feelings in my head of which I haven't had since my chaotic seizure days. I'm sure the Dr. would call this inflammation in my brain ect. I'm just hoping that this diet sees more positive outcomes in the coming forth days.
Day 13: Not feeling great today. Not much energy and a lousy head cold. Contemplating the possibility of quitting the diet. Lost a total of 7 lbs. now. No difference noted in energy levels. In fact if any, it would be a great diminish in ability to have energy. Discussed the pros' and cons' of my lab results with my husband and family--oddly enough we were sitting outside around the fire barrel while they were roasting marshmallows in the snow. Prayed about it a lot. Felt the need to end the diet before the 30 day period in which I could get a refund back. Called, and emailed. They were closed, but I managed to get a hold of them by Monday. Made the drive to South Jordan, UT to get an official cancellation of the contract and reimbursement of supplies not used. I feel good about my decision. It is so amazing to eat REAL food! I don't have the sugar cravings anymore, but certainly am enjoying what I eat with a little more heartfelt gratitude.
Labs reveal that somehow I either have a parasite or human protozone. Not sure what that means, but it wasn't identifiable in the list of the top 25 parasites. 7/9 of my good bacteria is too high and therefore causing absorbtion and permeability issues. If I stuck with the diet, they'd spend 1-1/2 months killing off the excess good bacteria and replacing it with an appropriate level of bacteria. Personally--that doesn't sound like it would feel even slightly okay. Hormones are wacky, but nothing new. I'm apparently 70% into pre-menopausel kingdom. Doesn't make much sense, considering I'm not even 30 yet...But that is what the labs point to. I still want to research the internet just for my own personal knowledge of the labs. It doesn't put a damper in my mind though. Heavenly Father has a plan for me, and he is the one in charge. Just because a lab test says something, doesn't mean he can't heal me or allow me the opportunity to be a mother to someone more than my pup Ruby. With God, nothing is impossible!
Saturday I helped unload a trailer full of firewood. It snowed 2-3 inches Friday night, and we forgot to cover the trailer, so it took twice as long to dust the snow off of each hunk of wood. Then throw it in the wheelbarrow and haul it to the wood pile. I only dusted and chucked wood into the wheelbarrow, but it was exhausting enough to waste me for the remainder of the day. I've found very little supply of energy on this diet of primarily fruits and veggies w/a little helping of meat.
Later in the day for my part-time job, we took "J" to the Kiwanis Park and let him go sledding. I made it down about 5 times, mostly because I love sledding but the walk back up the hill was tiring. I munched on my portable salad and wished that I could call it a day and go to bed. I think Saturday was the most worn out that I have been in a long number of months.
I've lost about 5 pounds. Losing weight was not my goal, but it has been noted. I'm praying that my lab results are in by my appt. on Thursday so that I can hopefully start adding food choices back into my diet. I'm on the fence as to what should come first, corn, butter, potatoes, or pasta. I think it would be wishful to ask for pasta first, but popcorn would be absolutely Amazing! I'm mostly tired of a lack of flavor in my foods. I'm not allowed to add anything except salt/pepper. I'm not fond of quinoa! I love and savor over buckwheat--though when I'm frustrated I call it "Buttwheat". Even the gagging liver cleanse has become manageable. Unsweetened almond milk went from bearable to a delicacy. I haven't craved sugar so long as I haven't been face to face with it. I think at this point it is more of a mind dwelling than an actual craving. My mind remembers how good things were and can even just about bring the smell and taste of things. Interesting how the brain works! I'm not sure it is a stress-free diet on my body. I've had speech interruptions , facial twitching, left eye twitching and buzzing/static feelings in my head of which I haven't had since my chaotic seizure days. I'm sure the Dr. would call this inflammation in my brain ect. I'm just hoping that this diet sees more positive outcomes in the coming forth days.
Day 13: Not feeling great today. Not much energy and a lousy head cold. Contemplating the possibility of quitting the diet. Lost a total of 7 lbs. now. No difference noted in energy levels. In fact if any, it would be a great diminish in ability to have energy. Discussed the pros' and cons' of my lab results with my husband and family--oddly enough we were sitting outside around the fire barrel while they were roasting marshmallows in the snow. Prayed about it a lot. Felt the need to end the diet before the 30 day period in which I could get a refund back. Called, and emailed. They were closed, but I managed to get a hold of them by Monday. Made the drive to South Jordan, UT to get an official cancellation of the contract and reimbursement of supplies not used. I feel good about my decision. It is so amazing to eat REAL food! I don't have the sugar cravings anymore, but certainly am enjoying what I eat with a little more heartfelt gratitude.
Labs reveal that somehow I either have a parasite or human protozone. Not sure what that means, but it wasn't identifiable in the list of the top 25 parasites. 7/9 of my good bacteria is too high and therefore causing absorbtion and permeability issues. If I stuck with the diet, they'd spend 1-1/2 months killing off the excess good bacteria and replacing it with an appropriate level of bacteria. Personally--that doesn't sound like it would feel even slightly okay. Hormones are wacky, but nothing new. I'm apparently 70% into pre-menopausel kingdom. Doesn't make much sense, considering I'm not even 30 yet...But that is what the labs point to. I still want to research the internet just for my own personal knowledge of the labs. It doesn't put a damper in my mind though. Heavenly Father has a plan for me, and he is the one in charge. Just because a lab test says something, doesn't mean he can't heal me or allow me the opportunity to be a mother to someone more than my pup Ruby. With God, nothing is impossible!
Thursday, January 5, 2012
2012 A Year in the Making!
http://youtu.be/lrZij9MSTRI
This is a link to the mormon ad message for the new year. I really enjoyed viewing it! I'm not good w/technical support, so I've not figured out why the video won't appear, but the link is above.
My goal this year is to make the most out of every moment despite my health status. Life is too short to worry and get lost in the details. I recently purchased a new sewing machine. Although it is on backorder, I'm hoping to learn to sew childrens'
and eventually adult clothing once I acquire it. I plan to further my passion for quilting with new fun stitches!
Gratitude for my appendages occurred today when I smashed my left index finger between 5 tables at a Relief Society sewing activity this morning. I apparently smashed it hard enough it began to bleed. Not a problem if I had noticed it, but I hadn't until it had bled across my hand. I held in my yelp when I smashed it, since I didn't want to have to explain the stupidity of my injury. Though it still managed to be revealed, and eventually I found myself standing in a closet hunting down bandaids in an ancient 1950's first aid kit.
Kind of random thought...But what's up with all the dead birds! Is there a bird reunion occurring in heaven? They've been literally dropping out of the sky, and several can be seen where they've plopped, or landed in the church parking lot.
This is a link to the mormon ad message for the new year. I really enjoyed viewing it! I'm not good w/technical support, so I've not figured out why the video won't appear, but the link is above.
My goal this year is to make the most out of every moment despite my health status. Life is too short to worry and get lost in the details. I recently purchased a new sewing machine. Although it is on backorder, I'm hoping to learn to sew childrens'
and eventually adult clothing once I acquire it. I plan to further my passion for quilting with new fun stitches!
Gratitude for my appendages occurred today when I smashed my left index finger between 5 tables at a Relief Society sewing activity this morning. I apparently smashed it hard enough it began to bleed. Not a problem if I had noticed it, but I hadn't until it had bled across my hand. I held in my yelp when I smashed it, since I didn't want to have to explain the stupidity of my injury. Though it still managed to be revealed, and eventually I found myself standing in a closet hunting down bandaids in an ancient 1950's first aid kit.
Kind of random thought...But what's up with all the dead birds! Is there a bird reunion occurring in heaven? They've been literally dropping out of the sky, and several can be seen where they've plopped, or landed in the church parking lot.
Sunday, January 1, 2012
Humanitarian Quilts
I've been sewing quilt squares together from kits that I recently picked up at the Layton D.I. It helps me to do something productive when I'm not feeling well enough to go outside. Also, I wanted the experience of putting together abstract pieces of fabric to make a colorful quilt. I'm not sure that the D.I. fabric is my best example of beautiful abstractness, but it is a starting grounds.
I don't have a picture of the other quilt I put together. It had strips of fabric instead of squares. Both made full sized quilts. I only sewed the fronts and took them back to be bound at the D.I. Our living room is lacking in size to be able to set up quilting frames and do them here. The humanitarian couple were excited to receive the 2 quilt tops that I made in 1 day. Next Tuesday they will go up to be quilted. The center has received word from Salt Lake City, that they are cutting back the hours they are open. Apparently the warehouses in Salt Lake City are stocked to the brim, and all the donations received will be to service the organizations in the local area. Money will be given to Stake Presidents for areas to purchase necessary humanitarian supplies. It is so expensive to ship blankets ect. to most areas. They were given figures of plane expenses that were jaw dropping. Anyway, this will begin to be implemented except in a few sparse areas of the world where supplies can't be purchased to make quilts ect., because the stores are lacking. Shipments will still be sent to these few select areas of the world.
Hashimoto Diet Dairy & Gluten-Free
I completed a complex amount of labs including my saliva about 1 week before Christmas. I will be eating a dairy & gluten free diet for the next 3 weeks. By then, labs will be back to determine what absorbtion problems I have or food allergies.
Day 1 has not been very great, so I'm not looking forward to the upcoming weeks. The liver detox powder gave me a headache within 10 min., and I developed hives within 30 min. of sitting at church. So needless to say I ditched Sunday school and felt pretty cruddy. I've decided to try and document my meals, though I didn't photograph dinner since I was starving and picture taking wasn't on the top of my agenda.
The powder to cleanse my liver has a gooey texture that I despise. I blended it with a banana to try and chug it down. Turkey sausage was actually a lifesaver. Cream of buckwheat cereal--not great, but over the course of the day has become a staple to survive.
Lunch with sweet potato fries, turkey sausage, and apple, celery, almond slivers, and sunflower seeds. Thankfully that nasty powder for the first 4 days will only be consumed before breakfast. My tastebuds are learning to acclimate to a new spectrum of flavor.
Today is day 5. I'm actually shocked I've survived so well! I'm learning to love fruits and veggies--as that is the closest to sweets I will be having for the next month or so. Cream of Buckwheat or "buttwheat" as I frequently call it, is actually becoming tastier with each passing day. I think I'd put it on equal grounds as my all time favorite cream of wheat! I got to have a phone appt. w/my Dr. down in South Jordan. I will have them weekly for the next 6 months to track my progress. I was anxious for the appt, yet alleviated afterwards. Kind of comforting, good to hear positive news when the restrictions of foods are hard to manage. So the nasty Clear Vite that is supposed to cleanse my liver is either going to be done in 3 weeks (when the 2 canisters would be emptied w/normal doses) or sooner if my hives go haywire with the increasing dosages. Good to know how long the torture will last! Next Thursday I should hear back about the results of all the labs that were run. I've requested that I receive copies of all my lab reports in addition to everything the Dr. discusses w/me on the phone. Digestion is still the same...out of whack. Mineral oil, and Milk of Magnesia are my last 2 operative weapons. So other than the new influx of hives, I haven't noticed a change in my level of energy ect. I hear that it takes 10 days to get gluten out of your system, so I still have some days to go. I haven't yet figured out how to make sacrament bread that doesn't have egg or other vital ingredients that I'm not allowed to eat with my limited diet. So I've just been taking the sacrament and putting my trust in the hands of the Lord that I'm doing the best that I know how to do.
Speaking of sacrament meeting...A few weeks ago, a young child pulled the fire alarm. Quite impressive..the alarms actually talk and tell you there is an emergency and to evacuate to the nearest exit. The alarm went off exactly as the sacrament was starting to be passed. Not all the fire alarms in our building are the same design, so as the bishops discovered..none of them had keys to shut off the alarm and strobe lights. We sit in the back area, and they finally got the lights in the chapel turned off, except in the back. I went out to the foyer since the lights were causing my head to feel like a refrigerator was alive in it. My face was twitching and I preferred to avoid a seizure if at all possible. There was a bit of a mix up with the sacrament and everyone receiving it since there is a boy in our ward with Aspergers on the Autism spectrum. He is highly afraid of fire alarms. So when it went off, out the door he went. He left his sacrament tray and refused to come back inside. Let's just say it was an interesting Sunday!
Day 1 has not been very great, so I'm not looking forward to the upcoming weeks. The liver detox powder gave me a headache within 10 min., and I developed hives within 30 min. of sitting at church. So needless to say I ditched Sunday school and felt pretty cruddy. I've decided to try and document my meals, though I didn't photograph dinner since I was starving and picture taking wasn't on the top of my agenda.
Today is day 5. I'm actually shocked I've survived so well! I'm learning to love fruits and veggies--as that is the closest to sweets I will be having for the next month or so. Cream of Buckwheat or "buttwheat" as I frequently call it, is actually becoming tastier with each passing day. I think I'd put it on equal grounds as my all time favorite cream of wheat! I got to have a phone appt. w/my Dr. down in South Jordan. I will have them weekly for the next 6 months to track my progress. I was anxious for the appt, yet alleviated afterwards. Kind of comforting, good to hear positive news when the restrictions of foods are hard to manage. So the nasty Clear Vite that is supposed to cleanse my liver is either going to be done in 3 weeks (when the 2 canisters would be emptied w/normal doses) or sooner if my hives go haywire with the increasing dosages. Good to know how long the torture will last! Next Thursday I should hear back about the results of all the labs that were run. I've requested that I receive copies of all my lab reports in addition to everything the Dr. discusses w/me on the phone. Digestion is still the same...out of whack. Mineral oil, and Milk of Magnesia are my last 2 operative weapons. So other than the new influx of hives, I haven't noticed a change in my level of energy ect. I hear that it takes 10 days to get gluten out of your system, so I still have some days to go. I haven't yet figured out how to make sacrament bread that doesn't have egg or other vital ingredients that I'm not allowed to eat with my limited diet. So I've just been taking the sacrament and putting my trust in the hands of the Lord that I'm doing the best that I know how to do.
Speaking of sacrament meeting...A few weeks ago, a young child pulled the fire alarm. Quite impressive..the alarms actually talk and tell you there is an emergency and to evacuate to the nearest exit. The alarm went off exactly as the sacrament was starting to be passed. Not all the fire alarms in our building are the same design, so as the bishops discovered..none of them had keys to shut off the alarm and strobe lights. We sit in the back area, and they finally got the lights in the chapel turned off, except in the back. I went out to the foyer since the lights were causing my head to feel like a refrigerator was alive in it. My face was twitching and I preferred to avoid a seizure if at all possible. There was a bit of a mix up with the sacrament and everyone receiving it since there is a boy in our ward with Aspergers on the Autism spectrum. He is highly afraid of fire alarms. So when it went off, out the door he went. He left his sacrament tray and refused to come back inside. Let's just say it was an interesting Sunday!
BYU-Idaho Antonio's Graduation December 2011
Holly was going "nuts" over a walnut. She thought it was a ball.
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