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.
Wednesday, March 28, 2012
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!
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