Bytemi
New member
Good Afternoon Spyder Lovers Family
I have been gone so long, I'm sure most of you don't know me. The last two years have been very eventful. The last time I posted it was to let everyone know that we were selling Stealth Billie (by the way the truck bed liner held up great, never faded, never flaked, it was an awesome idea to repaint Billie a flat black). Seeing the inevitable in site "disability" I opened an online store selling antique and vintage items. I figured if I was not able to work outside the home, I could work inside the home. Now my little store in no way replaces my salary, but it is something and we are using the proceeds from the store to pay down our upside mortgage, to prepare for losing my income. The MS has truly been kicking my ass. A typical day for me is going to work and coming home and going to bed. I will grab my laptop and work on store and I've become an expert at bed photography! Over the last year this has only gotten worse, the tremors make it appear that I am having a seizure all the time, I can't walk or stand for any long period of time and to top it all off, I lost my ability to think.
I had a full cognitive evaluation done last July and found that I am smartest stupid person earth! When I was first diagnosed in April of 1996, they did a baseline cognitive test. At that time I was in upper 97% of the US for IQ. In July we found that in when it came to visual memory I was in the lower 2% and for problem solving I was in the upper 82% of the US. This may not seem like a big deal, but to lose that much of your IQ in a couple of years is awful, I feel stupid most of the time.
Over the course of the 2 years, they put me on so much medication, I couldn't even keep it straight. I do however have the smartest dog on earth and she won't let me leave the bathroom in the morning without grabbing my pills, so I could go to work. About 2 months ago, my husband and I sat down to talk about the options, we were seriously considering disability. The problem that we faced was that the company that I work for stopped carrying short term disability and their long term disability no longer covered me for various reasons. Social Security disability has not approved a person with MS since the Affordable Care Act went into affect (my neurologist gave me this piece of information, he can't get anyone approved).
So I had a crazy idea that maybe I just needed to do more. Maybe if I pushed a little harder I would start making it further. So I started leaving work 30 minutes early 3 times a week so I could do PT. When I started I was able to use elliptical for 1 minute and 17 seconds before my legs gave out. It been two months, and I am now at 20 minutes and 26 seconds. But my fatigue is still killing me and cognitive issues are getting worse. I got lost driving home from work. I've worked at the same company for 10 years and I got lost and didn't know where I was. That tipped me over the edge and I started evaluating when the MS worsened. It all started with one pill, that lead to another pill, that lead to another that lead to another pill...... So two weeks ago, I stopped all my medications but the one that I have been on for 3 years.
My energy is back to normal (for me), Erik said I'm repeating myself less and tests my memory without my knowledge. Like telling me I didn't do something that I did actually did and I am able to give him a blow by blow of how I completed the task and what was done with it. The limp has subsided and my legs don't get tired as quickly. The tremors are present, but manageable.
Having said all that, I'm starting to think that I can ride again. There are a couple of accommodations that I need to work out:
1. My right hand is weak and it hurts to hold the clutch in, so we will need a semi automatic.
2. Cooling, I need to find a way to add Air Conditioning to my jacket so I can be geared and not overheat.
3. Finding the right Spyder, Erik thinks a touring RT would be the best and make me comfortable.
I can't believe that after two week of being off the meds, have stopped what I thought was the progression of the MS. Isn't that weird, the drugs that were suppose to control it, made it worse.
As for Little Bytemi, she has totally over come the Convergence Insufficiency. She is a straight A student and in the advanced Math and Science program at school. She was doing Algerbra in 6th grade. We are so proud of her. She said she sees me struggle and not give up and if I can overcome MS she can overcome anything. She is right, her only limitation is what she doesn't fight against. I know that I have said this before, but I will say it again, thank you to everyone that supported her and us while she was in vision therapy.
This forum is awesome!!!!!!!! and it feels really good to be back here talking about getting back on another Spyder. OK it feels great to be on a computer that is not store or work related. Nothing can replace Stealth Billie (she went to a very nice deaf lady that needed the accommodation we had added for my poor sight).
I have been gone so long, I'm sure most of you don't know me. The last two years have been very eventful. The last time I posted it was to let everyone know that we were selling Stealth Billie (by the way the truck bed liner held up great, never faded, never flaked, it was an awesome idea to repaint Billie a flat black). Seeing the inevitable in site "disability" I opened an online store selling antique and vintage items. I figured if I was not able to work outside the home, I could work inside the home. Now my little store in no way replaces my salary, but it is something and we are using the proceeds from the store to pay down our upside mortgage, to prepare for losing my income. The MS has truly been kicking my ass. A typical day for me is going to work and coming home and going to bed. I will grab my laptop and work on store and I've become an expert at bed photography! Over the last year this has only gotten worse, the tremors make it appear that I am having a seizure all the time, I can't walk or stand for any long period of time and to top it all off, I lost my ability to think.
I had a full cognitive evaluation done last July and found that I am smartest stupid person earth! When I was first diagnosed in April of 1996, they did a baseline cognitive test. At that time I was in upper 97% of the US for IQ. In July we found that in when it came to visual memory I was in the lower 2% and for problem solving I was in the upper 82% of the US. This may not seem like a big deal, but to lose that much of your IQ in a couple of years is awful, I feel stupid most of the time.
Over the course of the 2 years, they put me on so much medication, I couldn't even keep it straight. I do however have the smartest dog on earth and she won't let me leave the bathroom in the morning without grabbing my pills, so I could go to work. About 2 months ago, my husband and I sat down to talk about the options, we were seriously considering disability. The problem that we faced was that the company that I work for stopped carrying short term disability and their long term disability no longer covered me for various reasons. Social Security disability has not approved a person with MS since the Affordable Care Act went into affect (my neurologist gave me this piece of information, he can't get anyone approved).
So I had a crazy idea that maybe I just needed to do more. Maybe if I pushed a little harder I would start making it further. So I started leaving work 30 minutes early 3 times a week so I could do PT. When I started I was able to use elliptical for 1 minute and 17 seconds before my legs gave out. It been two months, and I am now at 20 minutes and 26 seconds. But my fatigue is still killing me and cognitive issues are getting worse. I got lost driving home from work. I've worked at the same company for 10 years and I got lost and didn't know where I was. That tipped me over the edge and I started evaluating when the MS worsened. It all started with one pill, that lead to another pill, that lead to another that lead to another pill...... So two weeks ago, I stopped all my medications but the one that I have been on for 3 years.
My energy is back to normal (for me), Erik said I'm repeating myself less and tests my memory without my knowledge. Like telling me I didn't do something that I did actually did and I am able to give him a blow by blow of how I completed the task and what was done with it. The limp has subsided and my legs don't get tired as quickly. The tremors are present, but manageable.
Having said all that, I'm starting to think that I can ride again. There are a couple of accommodations that I need to work out:
1. My right hand is weak and it hurts to hold the clutch in, so we will need a semi automatic.
2. Cooling, I need to find a way to add Air Conditioning to my jacket so I can be geared and not overheat.
3. Finding the right Spyder, Erik thinks a touring RT would be the best and make me comfortable.
I can't believe that after two week of being off the meds, have stopped what I thought was the progression of the MS. Isn't that weird, the drugs that were suppose to control it, made it worse.
As for Little Bytemi, she has totally over come the Convergence Insufficiency. She is a straight A student and in the advanced Math and Science program at school. She was doing Algerbra in 6th grade. We are so proud of her. She said she sees me struggle and not give up and if I can overcome MS she can overcome anything. She is right, her only limitation is what she doesn't fight against. I know that I have said this before, but I will say it again, thank you to everyone that supported her and us while she was in vision therapy.
This forum is awesome!!!!!!!! and it feels really good to be back here talking about getting back on another Spyder. OK it feels great to be on a computer that is not store or work related. Nothing can replace Stealth Billie (she went to a very nice deaf lady that needed the accommodation we had added for my poor sight).
ray:
Hey, Old Friend!! 
