Working on My Fitness

For the first time in a long time, like really really long time, I'm actually able to engage in physical activity without extreme pain and/or feeling like death warmed over afterward. This is a huge development. I think there are a combination of factors playing into this. All good things, but all things that have taken a long time to come to fruition.

First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.

Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.

What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.

This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.

Rights of Disabled Person > Your Allergy Issue

Imagine this scenario. You are allergic to dogs. You are in need of a service animal. You get a service pig. The pig is just as well-behaved, well-mannered, and well-trained as any seeing eye dog....

You need this animal because you have seizures, you can't turn on lights, you're blind, you have any number of issues and can't function on a day to day basis without help, and your service animal has provided you with a level of independence and freedom you've not had since before your injury, blindness, ever in your life.

This is not a stretch of the imagination. Service animals provide a level of independence and freedom to the people they serve. I applaud the USDOT for making rule changes that allow these valuable animals on board planes. I can't imagine needing such an animal, but I also can't imagine denying these people the right (and it is a legal right under ADA) to bring their animals with them.

As with anything, there will always be naysayers. Why is it that people think their allergies or whatever entitle them to deny other people their legal rights? You can take a benadryl or a claritin or whatever... These animals aren't pets. Not even close. Some people who need service animals wouldn't be able to travel without them. It makes me sad that people would even consider this an issue. Please be compassionate to others and realize that these aren't pets. These are animals who serve.

WMATA's Disability Application

I was thinking this morning about disabilities. If you've read many of my posts, you know I contemplate this on a pretty regular basis. This time, I was sparked by the large signage about disability fares on WMATA. I have an ADA Disability that requires accommodation, so I should qualify... should being the operative word.

I went to WMATA's website to further investigate their policies. There are some things I am beginning to feel I should take care of before I something happens, as a kind of insurance policy against the future, and this is one of those things. Especially since the disability office has the worst hours known to man. Why are they only open 8:30 AM to 4:30 PM on some days and 8:30 AM to 2:30 PM on others? Because they're WMATA.

Anyway, I found their policies on the application but I found it to be a little quizzical. I expected that my doctor would be required to fill out the form, that's fine, but the categories they have are interesting and as follows:

1. NON-AMBULATORY: An individual is unable to walk and requires the use of a wheelchair or other mobility device.

2. SEMI-AMBULATORY: An individual has a chronic condition, which substantially limits the ability to walk, or is unable to walk without the use of a caliper leg brace, walker or crutches.

3. AMPUTATION: An individual has an amputation of one or both hands, arms, feet, or legs.

4. STROKE: An individual has substantial functional motor deficits in any of two extremities, loss of balance and/or cognitive impairments three months post stroke.

5. NEUROLOGICAL CONDITIONS OTHER THAN STROKE: An individual has difficulty with coordination, communication, social interaction and/ or perception from a brain, spinal or peripheral nerve injury or illness, has functional motor deficits, or suffers manifestations that significantly reduce mobility. A specific diagnosis is required.

6. PULMONARY OR CARDIAC CONDITIONS: An individual has a pulmonary or cardiac condition resulting in marked limitation of physical functioning and dyspnea during activities such as climbing steps and/or walking a short distance. * If diagnosis is asthma, please state whether: a) Individual has been on systemic medication for the immediate past six months, OR b) Individual has been required to use fast acting inhaler for three or more episodes per week for the immediate past six months. A specific diagnosis is required.

7. BLIND OR LOW VISION: An individual is legally blind, whose visual acuity in the better eye, with correction, is 20/200 or less, or who has tunnel vision to 10 degrees or less from a point of fixation or so the widest diameter subtends an angle no greater than 20 degrees. An individual has low vision, and whose visual acuity is
in the range of 20/70 to 20/200 with best correction.

8. DEAF OR HARD OF HEARING: An individual with a pure tone average greater than 70 dB in both ears, regardless of use of hearing aids.

9. EPILEPSY: An individual has had at least one tonic-clonic seizure within the past
four months.

10. DEVELOPMENTAL OR LEARNING DISABILITIES: An individual has a significant learning, perceptual and/ or cognitive disability. Some conditions are excluded from eligibility such as attention deficit disorder (ADD). A specific diagnosis is required.

11. MENTAL ILLNESS: An individual whose mental illness includes a substantial disorder of thought, perception, orientation, or memory that impairs judgment and behavior. A specific diagnosis is required.

12. CHRONIC PROGRESSIVE DEBILITATING CONDITIONS: An individual who experiences debilitating diseases, autoimmune deficiencies, or progressive and uncontrollable malignancies, any of which are characterized by fatigue, weakness, pain and/or changes in mental status that impair mobility. A specific diagnosis is required.

Ok, so most of this seems reasonable to me... until you get to #12. Autoimmune deficiencies? Do you mean Autoimmune Diseases and Immune Deficiencies? I mean, my illness is characterized by joint pain and fatigue, so I'm pretty sure my doctor will sign off, but I really wish it was more clear. I also fear that, since I don't have a listed diagnosis, approval will be challenging. I am hopeful it won't, but I don't think I have the courage or desire to start the process now. Maybe by the time my next treatment comes around, I'll be ready.

UPDATE: This little gem is also a little troubling to me... Granted, none of my things are contageous, but things like TB and HIV are...

Who is not eligible: People whose sole incapacity is pregnancy, obesity, acute or chronic alcoholism or drug addiction, or have a contagious disease. Financial need is NOT a consideration.

Inability

Inability is wicked.

There are tons of things I probably shouldn't do with a PIDD. There are things that are counterindicated and blah blah blah. I know I take a lot of "risks," but often these things are rewarding and/or necessary to continue to live a normal life.

Then comes the inability. Oh man. Today, guys, for serious, I could not for the life of me open my soda bottle. I struggled for several minutes to open the thing. Now, I'm pretty sure they haven't made these things locked down like Fort Knox, but that's how I felt. I did finally get it open, but left indentations on my hands to be able to grip it tight enough to open it. Seriously. From a soda bottle. Yeah. I'm that special.

It's stuff like this that makes me consider the big picture fears I have about career, family, etc. These fears, coupled with my overarching feeling of inability, can really impact the choices I make. Why am I doing my current job? Health insurance. Is that a good reason to take employment? Absolutely not. Did I have a choice? Not really.

There's this pervasive message in the US that you can do anything you set your mind to, be anything, anywhere. For some people, that's not the case. For me, that's not the case. I am generally an optimistic person and will still try to do those things I shouldn't or can't do, but that doesn't make it any easier. In fact, sometimes, it makes it more difficult to come to terms with the reality of inability.