elfwench: (Default)
So today I set to finding out about where I can get exercise being, you know, mobility impaired. I hit pay dirt when I found NCPAD.org. the National Center on Physical Activity and Disability.

I found there that Baxter YMCA here on the south side actually has a fitness class called Fitness Following Disability and that they have accessible exercise equipment available. Also, they have a sliding scale membership available for low income people. Double win!

I just sent off for my proof of income letter from Social Security so I can go and enroll. SSA.gov site said I should get my letter around March 3rd. That's fine. I'll likely have to wait a bit after the cardiac cath before I resume (er... begin) such physical activity.

I didn't even know that this was available until today. I'm excited!
elfwench: (Default)
So today I set to finding out about where I can get exercise being, you know, mobility impaired. I hit pay dirt when I found NCPAD.org. the National Center on Physical Activity and Disability.

I found there that Baxter YMCA here on the south side actually has a fitness class called Fitness Following Disability and that they have accessible exercise equipment available. Also, they have a sliding scale membership available for low income people. Double win!

I just sent off for my proof of income letter from Social Security so I can go and enroll. SSA.gov site said I should get my letter around March 3rd. That's fine. I'll likely have to wait a bit after the cardiac cath before I resume (er... begin) such physical activity.

I didn't even know that this was available until today. I'm excited!
elfwench: (Default)
On Sunday at church a woman at church with a walker sat behind me. She said, "I see that you are dealing with disability yourself," gesturing to my green forearm crutches that were leaning against the chair beside me.

I smiled and nodded in response and her next statement stunned me, especially being said in a place that is supposed to bring out the best in you. Though I don't fault her in the least for her honesty, and I well remember the time that I, too, was in that mindset.

"Don't you just hate it?"

My confusion and shock at that question must have shown on my face because she followed with, "Or do you?"

"No, not really," I told her, "It is what it is. I mean, yeah, it's difficult, but I don't hate it, in fact it's brought a lot of blessings along the way. For one thing, If it weren't for that, among other things, I probably wouldn't have found my way here to Unity."

Her expression softened and she nodded, and I could tell she had food for thought, so I left it at that.

And I spoke truthfully. Most of the time it just is what it is and there are many positive changes in my life that would not have happened had this not happened. I have been through my grieving process. But I am at a point that braces and crutches aiding my walking to me is no different than wearing my glasses to see clearly.

Still there are times that, in all honesty, it does get to me a bit. And, in particular, one aspect that still bleeds through and bothers me is the fact that it taxes my reserves, and a good day is followed by days when I just am wore out by the events of the day before. Today happens to be one of those days. Sunday I went to church. Yesterday I spent time with [livejournal.com profile] jarlina and her family. And today, I had to drag myself out of bed. And I know that there are things I need to do here, but I am running on empty.

I'm looking into trying to get an ultralight wheelchair, in particular a Quickie 2 (whether the original Quickie 2, the Quickie 2 HP, or the Quickie 2 Lite). I got a power chair last year, and had many mixed feelings on that transition, I was glad and yet I resisted using it to the extent that my doctor wants me to use it, using it more as my "car", plus the fact that it's not practical when you don't have a van with a ramp. But I've gotten to a point where I am emotionally ready to use an ultralight wheelchair, like the Quickie 2 (I don't have the upper body strength for a regular weight wheelchair) and I'm trying to find a way to get one. That way I could take it with me when going with friends in their cars. (Medicaid won't pay for a chair since I have the power chair... they fail to recognize that many disabled people have need for different mobility devices for different situations, like the fact that the power chair can't be transported in a regular car.) But I recognize the fact that I would have a lot more reserves if I were using a wheelchair more often, plus be a lot safer, which is my doctor's main issue since I fall a lot.

I don't know how I will be able to get one, but I have faith that will work out somehow I'm checking out various organizations, so far to no avail. MDA currently isn't paying for equipment as they've had fewer donations with the economy being as it is. So, my dear people, I'd love it if you could help out others like myself by donating to them. Hopefully, once they get more donations, they will be more inclined to start that program up again. If you know of a group that might help me, let me know, I'm all for brainstorming this.

I am also checking into eBay, etc. I've found some there. This is one of the cheapest of the size I need (It's hard to find them in the standard adult size, believe it or not, most are too wide or too skinny for my butt) And while it doesn't have anti-tippers nor, most likely, a seatbelt, those could be added easily enough. But so far I've not had the money for that, not even one going as cheaply as this one. But, it will work out somehow. As my minister reminds us all the time, "How" is none of my business.

But, it is what it is, and I'm okay with that. I may get frustrated at times, but really, it's just a thing. And with so much good stuff going on, I'm not going to drag myself down by focusing on this one difficulty. In fact, I just got called by Carla, and I'm going to a seminar tomorrow to learn about serving on the HEART Network. That call, and that opportunity, just made my day, and I am so looking forward to tomorrow.
elfwench: (Default)
First thought of the day: ZOMG! In just three weeks from today I'll be 50 years old! I'm a little weirded out by this fact. I really don't feel much older, especially mentally, than 30. This cannot be. True, age is only a number, but does the number have to be so big?

Usually I don't think a lot about my disability. I prescribe to the principle, "Adapt. Improvise. Overcome." I do what I've got to do in whatever way that works, even when it means that I overdo. If that means that I put on a backpack and stagger my way to the store (or at least to the bus stop, which itself is a quarter of a mile away), then so be it. But this week, and next week's goings on have brought the fact that I am disabled to the forefront of my reality.

Monday, as I posted before, I saw the neurologist about this mystery neuro disease of mine - currently dubbed Spino-Cerebellar Ataxia of Unknown Type since they've disproved the Friedreich's Ataxia with a point mutation on the "normal" gene theory through EMG and other tests. It was time for my 3 month check up to see how I was doing.

Doctor wanted me to start using my rollator. Also prescribed Occupational Therapy. But, as it would happen, the actual appointment made was for Physical Therapy, and in my home.

This was supposed to happen on Friday, but instead happened on Thursday. Why they told me Friday when the therapist I was assigned doesn't work on Fridays, I don't know. But I'm glad I was home or I would have missed it.

As it turned out, I didn't miss much. The physical therapist was a petite redheaded pixie, with an upturned nose, round face save for the pointed chin, and sparkling eyes named Jen. Her hair was cut in what we used to call a Hollywood Burr, a buzz cut with bangs: typically a boy's haircut, but on her it looked cute, oddly enough. She came up as I was using my improvised way of removing leaves from the porch and ramp, using a snow shovel in one hand, crutch in the other, and pushing the leaves down the ramp with it, and commented that it was a unique way to do that job.

We sat and talked as she did the intake, and she didn't even bother filling out paperwork. She agreed with me that what I really need is occupational therapy, and felt that there was nothing she could really do for me. Didn't even bother with having me fill out paperwork She agrees with the doctor that 2 falls in 3 months is too much and that I should use more than my crutch. Of course, if I used my crutch more consistently in the house, it might help. She is very anti-rollator and wants me to use a walker. A walker! Here I am thinking of trying to find someone to date again, and she's suggesting I use a walker. Also, how impractical can you get? I stayed calm, though I let her know I really wasn't ready for that yet. She said I'm in denial. She also said I should be asking friends and family for help.

Today I got a call from the Occupational Therapy people. I will be going to see them on Monday at University Hospital - my appointment is at 8:45 AM. Hopefully that appointment will be better. Though, why does it have to be so god damned early?

It's going to be a busy week. Tuesday I've got my appointment with CAGI for the Energy Assistance program. Friday I have my appointment with my Voc. Rehab. counselor. I've also got to see about getting my flu shot, too. Tried calling the doctor about that on Friday and got no answer. So I'll have to call them again Monday after I get back from OT. If not, I have an appointment on November 2nd with him anyhow.

Anyway, I'm tired, and I've mused about things here long enough. I think I'm going to have some more coffee and see what I can throw together for dinner. And once I get my blood sugar up I'll see about answering some emails.

Thanks for reading.
elfwench: (Default)
First thought of the day: ZOMG! In just three weeks from today I'll be 50 years old! I'm a little weirded out by this fact. I really don't feel much older, especially mentally, than 30. This cannot be. True, age is only a number, but does the number have to be so big?

Usually I don't think a lot about my disability. I prescribe to the principle, "Adapt. Improvise. Overcome." I do what I've got to do in whatever way that works, even when it means that I overdo. If that means that I put on a backpack and stagger my way to the store (or at least to the bus stop, which itself is a quarter of a mile away), then so be it. But this week, and next week's goings on have brought the fact that I am disabled to the forefront of my reality.

Monday, as I posted before, I saw the neurologist about this mystery neuro disease of mine - currently dubbed Spino-Cerebellar Ataxia of Unknown Type since they've disproved the Friedreich's Ataxia with a point mutation on the "normal" gene theory through EMG and other tests. It was time for my 3 month check up to see how I was doing.

Doctor wanted me to start using my rollator. Also prescribed Occupational Therapy. But, as it would happen, the actual appointment made was for Physical Therapy, and in my home.

This was supposed to happen on Friday, but instead happened on Thursday. Why they told me Friday when the therapist I was assigned doesn't work on Fridays, I don't know. But I'm glad I was home or I would have missed it.

As it turned out, I didn't miss much. The physical therapist was a petite redheaded pixie, with an upturned nose, round face save for the pointed chin, and sparkling eyes named Jen. Her hair was cut in what we used to call a Hollywood Burr, a buzz cut with bangs: typically a boy's haircut, but on her it looked cute, oddly enough. She came up as I was using my improvised way of removing leaves from the porch and ramp, using a snow shovel in one hand, crutch in the other, and pushing the leaves down the ramp with it, and commented that it was a unique way to do that job.

We sat and talked as she did the intake, and she didn't even bother filling out paperwork. She agreed with me that what I really need is occupational therapy, and felt that there was nothing she could really do for me. Didn't even bother with having me fill out paperwork She agrees with the doctor that 2 falls in 3 months is too much and that I should use more than my crutch. Of course, if I used my crutch more consistently in the house, it might help. She is very anti-rollator and wants me to use a walker. A walker! Here I am thinking of trying to find someone to date again, and she's suggesting I use a walker. Also, how impractical can you get? I stayed calm, though I let her know I really wasn't ready for that yet. She said I'm in denial. She also said I should be asking friends and family for help.

Today I got a call from the Occupational Therapy people. I will be going to see them on Monday at University Hospital - my appointment is at 8:45 AM. Hopefully that appointment will be better. Though, why does it have to be so god damned early?

It's going to be a busy week. Tuesday I've got my appointment with CAGI for the Energy Assistance program. Friday I have my appointment with my Voc. Rehab. counselor. I've also got to see about getting my flu shot, too. Tried calling the doctor about that on Friday and got no answer. So I'll have to call them again Monday after I get back from OT. If not, I have an appointment on November 2nd with him anyhow.

Anyway, I'm tired, and I've mused about things here long enough. I think I'm going to have some more coffee and see what I can throw together for dinner. And once I get my blood sugar up I'll see about answering some emails.

Thanks for reading.

June 2013

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