To recap: June 20-21st Special Needs Mutual Day Camp
It was a fun camp experience and I felt the spirit strongly when testimonies were shared. Here are some pics from the camp!
Tuesday, June 25, 2013
Day Camp 2013!
June 25th, 2013 Today I started 25mg Lamictal, 200mg Tegretol in the morning, and tonight I will take 100mg chewable Carbamazapine. It's been a busy week with up and down emotions.
To recap: June 20-21st Special Needs Mutual Day Camp
It was a fun camp experience and I felt the spirit strongly when testimonies were shared. Here are some pics from the camp!
Demonstration on the creation of the Earth.
A cherry tree!
Camp was a lot of fun and there were a lot of participants! On Thursday around 3:30pm I had a headache. I took 400mg ibuprofen and was feeling pretty good around dinnertime. At around 7:00pm I started feeling weird and laid down on the ground. I had a seizure that lasted over an hour. I was transported by blanket and 8 guys to the car and to McKay Dee ER. I was given 2mg of Ativan, 4 times and a pill of Ativan to go home with. It took the doctor 20 min. in the E.R. to stop the seizure. I really don't recall much of being there, but Antonio and my Mom say we were there from about 8pm until midnight.
To recap: June 20-21st Special Needs Mutual Day Camp
It was a fun camp experience and I felt the spirit strongly when testimonies were shared. Here are some pics from the camp!
Monday, December 3, 2012
Dec. 3rd, 2012
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.
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.
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.
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