I have done my share of volunteer work in my life. I’d even go so far as to say that if everyone put in the same hours of volunteer work that I have, the world would be a better place. I had years when my volunteer activities were a 20-hour-a-week part time job. I believe volunteering strengthens communities. I wasn’t working for pay anywhere, so I had time. Or perhaps I should say I had enough time for that. Looking back I think a full time job would have killed me. I was lucky that we could live on my husband’s salary alone.
My first free work was as Landscape Chair and then member of the Board of Directors in the townhouse complex we lived in from 1984 – 94 in San Diego. Or was it doing interviews for MIT of prospective students? It wasn’t long before I was the soccer team manager and helping out in classrooms. 1995 – 2003 in Maryland, as my kids got older, I continued helping out their soccer teams, and did a lot of volunteer work for the high school band.
In Maryland I also did a lot of essentially disability activism. I didn’t chain myself to the steps of a courthouse building, waving signs about equal rights, but I did work on several committees – some of which actually did change buildings and legislation. I was Chairperson of the Howard County Access committee, a group that the county building department would send architectural plans to for review before making accessibility changes. It wasn’t a huge county like San Diego, but we had libraries, senior centers, community buildings and a community college doing renovations that needed advice. Private groups would come to us from time to time. We were good!
I was also on a couple of state level committees, some were more productive than others. My favorite was one created to change the parking placard laws, and it involved writing legislation, getting senators and congressmen to vote for it, speaking at committee hearings etc. And we were successful.
I like running meetings – setting agendas, sending out notifications, controlling the conversation, writing up summaries and action lists. I feel like I can use some of the skills I learned years ago as a psych grad student intern , to be sure everyone has a voice, and everyone is heard. Oh, there’s always someone in the group who doesn’t quite go by the “rules”, but I didn’t have trouble cutting them off in a dignified way. In general, people want someone to take charge and run things orderly.
So, when I moved to San Diego in late 2004, not having many friends here anymore, I thought I might find some volunteer work to keep me busy and to meet more people. But it wasn’t so easy. In a way, I felt burned out for disability activism, and wanted something different. No kids in school anymore, no opportunities there. I thought about causes I support like Habitat for Humanity, and Meals on Wheels, but the work they want is more physical than I can do. In the end the place I felt the most attached to was the Humane Society, so I’ve been doing some volunteer work for them now for the past 2 or so years.
If you are local, or visiting San Diego, you should check out the San Diego Humane Society on Gaines St. It has got to be a model for the rest of the country. Owing to some generous gift, they have a beautiful campus, with a dozen little glassed in rooms for no more than 4 cats each, filled with furniture and soft bedding, and climbing structures (and even more space for dogs). They will not put a pet to sleep unless they truly are unadoptable, and it is not unusual for them to have pets there for a year waiting. They only take in pets that are relinquished by the owner, not strays. We’ve gotten all 4 of our cats there, and 2 of them were not cats that were easy to find homes for. One has a heart problem and needs daily medication, and his brother sprays his pee. The Humane Society was incredibly helpful and supportive, and I have thought I’d like to give something back – so chose them to do some volunteer work.
Volunteering there has been a little less satisfying though. I wish I could just sit in the rooms with the cats and give them petting time, but I can’t get in and out without someone escaping, and there is barely enough room in there for a regular chair let alone a wheelchair. The best plan is to sit on the floor. I would have liked taking the kittens to Petco on Saturdays to convince shoppers to adopt, but you need to ride in their van and set up cages. So, I volunteered to help out in the development office, where the paperwork gets processed. And every so often, when there’s a large amount of work, most often related to a fundraiser coming up, they put a call out for extra hands to make calls, count money or stuff envelopes.
And that is where I was this afternoon for 3 hours, counting money collected last Saturday at their Walk-a-thon fundraiser. I was told all together they brought in about $300,000, which is pretty good. And all day today people were counting coins, and dollar bills and $20s. One envelope alone had $2000 in it, but many had nothing because their donations were online and those will be counted separately. Checks are added up tomorrow. It’s a big production, and I’m pleased to help out.
I recognize several women (it is usually women at these things) and have even learned a few names. But the nature of the events - holding in your head how many $1 bills you just put in a pile, or adding up as you go a lot of loose change, doesn’t lend itself to much conversation. And these events are only a couple of times a year, so I haven’t really made any friends. When they have the Telethon fundraiser, I’m one of those in the back room who calls the donor when their credit card won’t get processed! You know – someone calls in, pledges X to their credit card, it is taken back to the person who runs the card number. When it fails, someone calls the donor to see what happened. Usually one of the digits was written wrong, once in a while the donor is surprised and even embarrassed. There’s more to the process than this, gifts to be chosen and mailed, competition and matching gifts to tally. Suffice it to say, it’s a long day of steady work with numbers, and free lunch, and later - dinner out because I’m exhausted!
I like to help, and I really believe in what the Humane Society does. I am still grateful that they are there, and know that if I called today, years after we adopted the cats, they would still see if they could help solve a problem. But each time I go, like today, I feel that I wish there was something I could do more directly for the cats.
And from time to time, I wonder if maybe there might be another volunteer project that would be a better fit for me, I just don’t know what right now.
Monday, May 3, 2010
Sunday, May 2, 2010
Paperwork
All my writing time today went to writing a Letter of Medical Necessity for the insurance company, to try to persuade them to pay for the features of my chair that I want and that cost extra. I also wrote a cover letter to go with it, to Vann, the medical supply rep I've been working with. I volunteered to write this letter, but I do expect him to edit it, and even for the doctor's office to edit it too. It should be on the doctor's stationery for one thing.
So, just to prove I was writing today - I'm going to paste both letters in here! This is dull stuff, I don't expect anyone to really read it, except hopefully the insurance company! They took 3 hours to write though. You would think it would be a no brainer that I need this stuff, but I am guessing that insurance will deny most of it.
Just to give a sense though of how much money we're talking about:
Base price of chair is $2995.
If I get one made of aluminum it could be $1000 less
Frogs legs with soft roll tires is $550
SPOX wheels are $695
Natural Fit handrims are $295
Marathon tires are $95
D's locks are $350
arm rests are $395
calf strap $35
The total cost of my chair as requested would be $5410.
But they could only agree to $1995 plus armrests and calf strap or $2425, which would mean I have almost $3000 out of pocket. It's worth pushing a little for insurance to pay for some of it!
---------------------------
May 2, 2010
To Whom It May Concern:
The purpose of this letter is to explain the medical necessity for the wheelchair and its features being prescribed for our patient, Donna Petranovich.
Donna is a 52 year old woman, who has been a T1 -2 paraplegic since a gunshot injury when she was 15 years old. She uses her wheelchair approximately 18 hours a day, and is totally independent for mobility and ADLs. She is a self-propeller using a manual wheelchair.
In the past 2 years Donna has developed deQuervain’s tendonitis in her right wrist, which has not totally healed despite extended rest and 2 cortisone shots. She is currently considering surgery. This condition is caused by overuse of the wrists, with the primary stress from pushing the wheelchair, and secondary source from transfers in and out of the wheelchair.
Her current wheelchair was purchased in 2003 and many parts are currently in need of repair, plus there are many new features available now that will aid her mobility and independence, and reduce strain on her wrist. We recommend that she be using a lighter weight chair, specifically a Tilite 2GX chair.
Titanium – is being prescribed for lighter weight, a savings of 3 pounds over an aluminum chair, this will aid in self-propulsion and maintain independence.
Frogs Legs – are being prescribed to remove vibration in the frame of the chair, to eliminate bouncing that causes skin irritation and muscle spasms, and that makes propulsion more difficult. 80% of a wheelchair’s vibration comes in through the front forks. Anything that can make her propulsion easier, short of getting power-assist wheels, is being prescribed.
Soft Roll Front tires are needed for compatibility with the Frogs Legs.
SPOX rear wheels – are prescribed for lighter weight. A total of 3 pounds will be reduced by using SPOX, versus her current mag wheels. This will aid propulsion.
Marathon tires – are being prescribed for their higher pressure (80-90 lbs versus the more typical 40-50 lbs), which reduces rolling resistance during propulsion.
Natural Fit push rims are also being prescribed for ease in propulsion. With Donna’s recent problems with tendonitis, this is essential. The Natural Fits will make her hand grip better, and ease the strain on her wrist.
D’s Locks are being prescribed because they are the best at being unobtrusive and out of the way, as well as securing the wheel so that it cannot move when the chair is parked. At any given time Donna has several ‘quarter-size’ bruises along her right thigh in varying shades of purple, red, green and yellow, from transferring into her chair off the bed, toilet or shower seat. The cause is the handle of the lock she currently has, pressing against her thigh as she passes over it. Not only are the D’s locks more secure, but they can be located someplace less likely to cause injury, and they require the least strength to engage. Even when Donna’s hands and wrists are weak, she will be able to engage these brakes. These brakes do not add extra weight to the chair.
As a package we are prescribing the wheelchair that gives Donna the best chance of maintaining her independence with a standard manual wheelchair. We have considered prescribing power-assist wheels, but believe that if these features outlined above are provided that Donna not need to take that next step for some time to come.
If you have any further questions, please do not hesitate to contact us,
Sincerely,
________________________________________________________________________________________
Physical Therapist, Sharp Rehabilitation Outpatient Therapy
858-939-3082
________________________________________________________________________________________
Medical Director, Sharp Rehabilitation Center
858-939-4480
---------------------
Hello Vann,
Attached is my draft of a letter of medical necessity for my next wheelchair. Feel free to edit as you see fit. Then you will send it over to Nancy Stevens and Dr Stenehjem to sign, correct?
I have just a couple of thoughts/ questions that have come to mind after talking to you.
I am ok with not getting the fold down seat back. The more I thought about it, the less cost effective it seems. If I paid $165 or more for this feature, it would aid me about 2 times a year when I'm getting into a car with a tight fit. In Buenos Aires, where this was an issue last February and we took 2 taxis (one for people, one for wheelchair in the backseat) the extra cost was about $25. $165 is a lot of taxi rides! Most of the time it isn't needed. And, what I lose is that 365 days of the year I am pushing a bit more weight, and there's then one other part that can break. So, the GXSB5 is the right choice, and I won't be stewing on this anymore.
When I measured the length from the front edge of my seat sling to the top rear of my footrest, I'm getting 15 inches. I'm still don't really understand why you think I'm going to have a problem. The instructions say from seat sling to back of footrest, what were we doing when you were here? It was something measuring 16 inches, with 2 or 2 1/2 taken off for a thick cushion. But when I measure from heel to top of cushion I now am getting 18 inches, so I'm still puzzled. I think 15 inches is the right amount here, and I'm willing to take the risk I'm wrong if you put in 15 inches. Or we can meet again to remeasure if this is going to hard to adjust later. If you are having trouble trusting me on this one - try this out - my seat is now 18.5 inches from the floor, correct? If the measurement from seat to footplate were less than 14 inches, then my foot pedals would be 4 1/2 inches from the ground, since my feet are going almost directly down, correct? But at this moment, my heals are 3 1/4 inches off the floor - so I am sure I'm right!
Front angle 80 degrees, 2" taper, 15" footrest length, and flip up footrest - GXFTR1
Front wheels and Frogs Legs - see if you can get 4" x 1 1/2" when the order goes to Tilite, ok? soft roll tires. if they can only do 4" by 1" that's ok. Also, request red tires if you can too. I know Frogs legs makes them. It didn't ask anywhere for my weight -but put it down as 175 pounds, though at the moment I weigh around 168. I don't want the frogs legs undersized again! I assume that when the order goes into Tilite there is some place for comments?
Spinergy SPOX, change color to yellow.
SUMMARY:
2 changes:
footrest length is 15 inches
SPOX color yellow
1 request:
Frogs legs, red tires, 1 1/2" wide tires and makes sure they know my weight.
Hope this is all you need. Please send me copies of everything - order form, letter, prescription. I like to double check things, but I also like to keep copies for my records.
Thanks, talk to you soon,
Donna
So, just to prove I was writing today - I'm going to paste both letters in here! This is dull stuff, I don't expect anyone to really read it, except hopefully the insurance company! They took 3 hours to write though. You would think it would be a no brainer that I need this stuff, but I am guessing that insurance will deny most of it.
Just to give a sense though of how much money we're talking about:
Base price of chair is $2995.
If I get one made of aluminum it could be $1000 less
Frogs legs with soft roll tires is $550
SPOX wheels are $695
Natural Fit handrims are $295
Marathon tires are $95
D's locks are $350
arm rests are $395
calf strap $35
The total cost of my chair as requested would be $5410.
But they could only agree to $1995 plus armrests and calf strap or $2425, which would mean I have almost $3000 out of pocket. It's worth pushing a little for insurance to pay for some of it!
---------------------------
May 2, 2010
To Whom It May Concern:
The purpose of this letter is to explain the medical necessity for the wheelchair and its features being prescribed for our patient, Donna Petranovich.
Donna is a 52 year old woman, who has been a T1 -2 paraplegic since a gunshot injury when she was 15 years old. She uses her wheelchair approximately 18 hours a day, and is totally independent for mobility and ADLs. She is a self-propeller using a manual wheelchair.
In the past 2 years Donna has developed deQuervain’s tendonitis in her right wrist, which has not totally healed despite extended rest and 2 cortisone shots. She is currently considering surgery. This condition is caused by overuse of the wrists, with the primary stress from pushing the wheelchair, and secondary source from transfers in and out of the wheelchair.
Her current wheelchair was purchased in 2003 and many parts are currently in need of repair, plus there are many new features available now that will aid her mobility and independence, and reduce strain on her wrist. We recommend that she be using a lighter weight chair, specifically a Tilite 2GX chair.
Titanium – is being prescribed for lighter weight, a savings of 3 pounds over an aluminum chair, this will aid in self-propulsion and maintain independence.
Frogs Legs – are being prescribed to remove vibration in the frame of the chair, to eliminate bouncing that causes skin irritation and muscle spasms, and that makes propulsion more difficult. 80% of a wheelchair’s vibration comes in through the front forks. Anything that can make her propulsion easier, short of getting power-assist wheels, is being prescribed.
Soft Roll Front tires are needed for compatibility with the Frogs Legs.
SPOX rear wheels – are prescribed for lighter weight. A total of 3 pounds will be reduced by using SPOX, versus her current mag wheels. This will aid propulsion.
Marathon tires – are being prescribed for their higher pressure (80-90 lbs versus the more typical 40-50 lbs), which reduces rolling resistance during propulsion.
Natural Fit push rims are also being prescribed for ease in propulsion. With Donna’s recent problems with tendonitis, this is essential. The Natural Fits will make her hand grip better, and ease the strain on her wrist.
D’s Locks are being prescribed because they are the best at being unobtrusive and out of the way, as well as securing the wheel so that it cannot move when the chair is parked. At any given time Donna has several ‘quarter-size’ bruises along her right thigh in varying shades of purple, red, green and yellow, from transferring into her chair off the bed, toilet or shower seat. The cause is the handle of the lock she currently has, pressing against her thigh as she passes over it. Not only are the D’s locks more secure, but they can be located someplace less likely to cause injury, and they require the least strength to engage. Even when Donna’s hands and wrists are weak, she will be able to engage these brakes. These brakes do not add extra weight to the chair.
As a package we are prescribing the wheelchair that gives Donna the best chance of maintaining her independence with a standard manual wheelchair. We have considered prescribing power-assist wheels, but believe that if these features outlined above are provided that Donna not need to take that next step for some time to come.
If you have any further questions, please do not hesitate to contact us,
Sincerely,
________________________________________________________________________________________
Physical Therapist, Sharp Rehabilitation Outpatient Therapy
858-939-3082
________________________________________________________________________________________
Medical Director, Sharp Rehabilitation Center
858-939-4480
---------------------
Hello Vann,
Attached is my draft of a letter of medical necessity for my next wheelchair. Feel free to edit as you see fit. Then you will send it over to Nancy Stevens and Dr Stenehjem to sign, correct?
I have just a couple of thoughts/ questions that have come to mind after talking to you.
I am ok with not getting the fold down seat back. The more I thought about it, the less cost effective it seems. If I paid $165 or more for this feature, it would aid me about 2 times a year when I'm getting into a car with a tight fit. In Buenos Aires, where this was an issue last February and we took 2 taxis (one for people, one for wheelchair in the backseat) the extra cost was about $25. $165 is a lot of taxi rides! Most of the time it isn't needed. And, what I lose is that 365 days of the year I am pushing a bit more weight, and there's then one other part that can break. So, the GXSB5 is the right choice, and I won't be stewing on this anymore.
When I measured the length from the front edge of my seat sling to the top rear of my footrest, I'm getting 15 inches. I'm still don't really understand why you think I'm going to have a problem. The instructions say from seat sling to back of footrest, what were we doing when you were here? It was something measuring 16 inches, with 2 or 2 1/2 taken off for a thick cushion. But when I measure from heel to top of cushion I now am getting 18 inches, so I'm still puzzled. I think 15 inches is the right amount here, and I'm willing to take the risk I'm wrong if you put in 15 inches. Or we can meet again to remeasure if this is going to hard to adjust later. If you are having trouble trusting me on this one - try this out - my seat is now 18.5 inches from the floor, correct? If the measurement from seat to footplate were less than 14 inches, then my foot pedals would be 4 1/2 inches from the ground, since my feet are going almost directly down, correct? But at this moment, my heals are 3 1/4 inches off the floor - so I am sure I'm right!
Front angle 80 degrees, 2" taper, 15" footrest length, and flip up footrest - GXFTR1
Front wheels and Frogs Legs - see if you can get 4" x 1 1/2" when the order goes to Tilite, ok? soft roll tires. if they can only do 4" by 1" that's ok. Also, request red tires if you can too. I know Frogs legs makes them. It didn't ask anywhere for my weight -but put it down as 175 pounds, though at the moment I weigh around 168. I don't want the frogs legs undersized again! I assume that when the order goes into Tilite there is some place for comments?
Spinergy SPOX, change color to yellow.
SUMMARY:
2 changes:
footrest length is 15 inches
SPOX color yellow
1 request:
Frogs legs, red tires, 1 1/2" wide tires and makes sure they know my weight.
Hope this is all you need. Please send me copies of everything - order form, letter, prescription. I like to double check things, but I also like to keep copies for my records.
Thanks, talk to you soon,
Donna
Saturday, May 1, 2010
Very Busy
Thursday and Friday I was very busy, and in the end managed to get everything accomplished that I really had to, and even a couple of things that I wanted to but that weren’t absolutely necessary. I let myself put “writing in my blog” lower down on my priority list, which at this moment I’m not pleased about, but not kicking myself about either. On the other hand I did let myself get together with one friend over dinner on Thursday, and I spent all afternoon with another friend Friday. So, it’s not like it was all work and no play.
Good stuff happened Friday – I met with the medical supply rep from Mobility Solutions, and we hammered out the specs for the next chair I want. I have to write up a rough draft for the Letter of Medical Necessity, and the office has to get his paperwork including the prescription together. My doc has to sign these, and then they go to the insurance company, hopefully by the end of this coming week. I’ll have time on Sunday to write more, so I plan to talk more about this stuff then. The decision process for what to order was not quite what I expected.
I had an interesting compliment yesterday too. The contractor who did the work for us when we moved in, remodeling the 2 bathrooms and building Jim’s office, stopped by to catch up on news. He’s a good guy, and I like him – did good work too. He’s a friend of mine on facebook, and saw that I had a blog, and has read some of it. That alone is a compliment, but then he said that when he read My Story, it made him teary – not sad, not pity, but just touched. And that touched me! I think it’s the first time I realized someone might react emotionally to what I’d written, and from a very unlikely source.
Good stuff happened Friday – I met with the medical supply rep from Mobility Solutions, and we hammered out the specs for the next chair I want. I have to write up a rough draft for the Letter of Medical Necessity, and the office has to get his paperwork including the prescription together. My doc has to sign these, and then they go to the insurance company, hopefully by the end of this coming week. I’ll have time on Sunday to write more, so I plan to talk more about this stuff then. The decision process for what to order was not quite what I expected.
I had an interesting compliment yesterday too. The contractor who did the work for us when we moved in, remodeling the 2 bathrooms and building Jim’s office, stopped by to catch up on news. He’s a good guy, and I like him – did good work too. He’s a friend of mine on facebook, and saw that I had a blog, and has read some of it. That alone is a compliment, but then he said that when he read My Story, it made him teary – not sad, not pity, but just touched. And that touched me! I think it’s the first time I realized someone might react emotionally to what I’d written, and from a very unlikely source.
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