Ranting Anew

Sometime ago, the Butterfly Cauldron blog, found at http://butterflycauldron.blogspot.com/, posted a piece that discussed life while working full time with a disability and dealing with not only the perceptions of others regarding what appears to them to be laziness, but also dealing with one's own frustrations, thwarted ambitions and financial concerns, among other things.

This piece and all of the comments which followed hit me squarely in the gut. For almost two years now, I have been going from one doctor's appointment to the next trying every available protocol for a very damaged knee. I thought, it appears incorrectly, that like the other chronic issues I deal with stemming from living with cerebral palsy for almost fifty years, that it would be manageable, the consequences relatively minimal and that I would find a job in my field after completing a graduate degree.

After an allergic reaction to the latest medication, I was sent to see an arthroscopic specialist who informed me that the knee damage was severe, that the knee was now twenty years older than the rest of me and that I would not gain any benefit from arthroscopy. After having been warned off total knee replacement by another specialist, I was left with the possibility of a partial replacement of the knee, although there is nothing in the medical literature to suggest this procedure was optimal for patients with CP and those with my condition who have had joint replacement are no longer walking.

The problem is the joints are not constructed to withstand the variability in gait or movement found in those with CP, thus, they have no predictable life span. That leaves the patient with greater possibility of joint failure, numerous surgeries more often over the remainder of the life span and, with any surgery, there are other risks and recovery issues to consider.

For those who may be unaware, cerebral palsy is a neurological condition usually stemming from damage to the motor and often other areas of the brain. In my case, it effects my mobility, balance and coordination and although my case is fairly mild, age and time have brought stress on joints because of the way I move and walk. This has led to osteoarthritis and other secondary conditions that have become increasingly well known among adult CP patients, although until the current generation of doctors, these were not discussed or documented, mostly because docs aren't trained sufficiently, don't see large numbers of adults with CP and until recently, adults with CP often failed to live normal life spans.

Now, we are living into old age and acquiring conditions due to the CP that complicate already thorny issues such as balance, mobility, work, independence and quality of life. Fatigue has become commonplace for me, as has pain, which varies with the duration and frequency of activities, and since I lack the talents of a soothsayer, I've no idea what to expect next and how that will effect the delicate balance achieved in my life thus far. My doctors, though sympathetic, largely put out fires rather than preventing anything, so they cannot tell me what to expect.

I had planned to graduate, get a job and move, working until traditional retirement age. Since my knee did not become problematic until recently and I had no reason symptomatically speaking, to assume life would not continue as it had for many years, this new development has left me worried financially, angry and frightened of the future by turns emotionally and wondering at the snail's pace of our medical and social service bureaucracy.

These concerns are not new to most of you, and you may be shaking your heads and thinking I might have seen this coming, but honestly, I did not. I am waiting for a sports chair with power-assist version three wheels, a bit like waiting for Godot,which in itself has been stupefyingly slow, and trying to figure out how to plan for several years ahead.

Unlike Butterfly Cauldron, I do not yet have a plan and find myself increasingly frustrated in trying to formulate one. Since college, I have always lived on my own and rarely had need of a chair or any other assistance. Until now. My ambitions toward a doctorate have been suspended, and I'm not sure about my work options anymore. I also have three chronically ill pets and will have to make arrangements should I no longer be able to live with them or provide their care.

Damn! I thought I had more time and did not expect to be thinking about these things before turning fifty...

Beautiful Afternoon...

The extremes of weather/climate change are very intense here. Months of drought followed by ten days of rain, which unfortunately, signals the beginning of hurricane season, a six-month span most who live here could do without.

That said, this afternoon is beautiful. A dry, sunny and not overly humid respite from the rain. The felines reclining on the screen porch haven't a care and for a moment, it is easy to forget the problems weighing heavily on many of us these days...

If only there were more days like this one.

Beaurocracy Strikes Again...

I spent most of today, rainy and overcast, on the telephone between the medical clinic and the adaptive seating specialist trying to solve the mystery of the missing LMN (Letter of Medical Necessity), which the vendor for my theoretically upcoming new chair called to inquire about last week.

After obtaining and sending the vendor a prescription, I discovered that the Adaptive Seating person had sent the LMN to the doctor almost one month ago but had as of yet no response or signature. Both the signed LMN and the prescription are required to go with additional paperwork from the vendor to my insurer, so this almost-month-long delay has been costly in terms of time for me, wear on my wrists and general waste of energy.

It turns out that the mysteriously missing LMN was sitting unopened in the doctor's mailbox, while the doctor is out of the clinic. The nurse and administrative assistant found it in short order following a call from me today. The Adaptive Seating Specialist, a consummate professional, has been notified, and the doctor's staff was also professional and courteous to call me and let me know the document had been located and would be signed by the doctor's colleague straight away in order to avoid further delay.

I can only hope dealing with my insurer will be this easy. (All puns intended).

This leads me to ponder the creation of our behemouth and often lumbering health care system...

-When and how did everything become such a beaurocratic nightmare?
-Are the industries supporting this system so over run with lobbyists that our politicians kiss their behinds or cave under immense pressure?
-Will things improve if we adopt a single payor system similar to Medicare?
-Whatever happened to the concept of "patient-centered" care? Has this been irrevocably lost or did we ever have it in the first place?

I can remember a pediatrician making a house call that resulted in a diagnosis of measles for yours truly, but that was sometime during the Ice Age...

Sarcasm aside, if I can get on the phone and straighten this out, I and everyone else reading this can e-mail Mr. Obama, our senators and congress persons and demand change beyond pandering to lobbyists. We can also let our doctors know we don't appreciate being "lost" in a pile someplace while our joints worsen with wear, and thank those who really work to help us out.

I intend to make Obama on down aware of these and other situations by exercising both my pen and the power of free speech, reminding each that while in their larger views I may not matter, my vote certainly does.

Blog Award And More...

I am the stunned and happy recipient of a Blog Award courtesy of Wheelie Catholic, who in my estimation, writes prolifically and far better than I on myriad issues of concern to those of us with disabilities. Thanks for the vote of confidence, Wheelie. I will give some thought to those I want to pass the award to as well, placing their names in a future posting.

Life At Full Tilt has been interesting. In the last several days, I've had an unexpected conversation with my new family physician, who prescribed a compounded ointment containing medication for the tendinitis plaguing my wrists. Dr. feels that I should begin looking ahead and trying to plan for the day when I might need to reduce or quit working, look into some services I may be eligible for that provide in-home assistance and seek information from Vocational Rehabilitation in my state so that I can work effectively until that point is reached.

Given the state of my knee, my age and the corresponding changes in my mobility, these are relatively good and thoughtful suggestions from an MD who has a special interest in serving those with disabilities and in teaching med students to do the same.

Dr. doesn't realise that I have been plagued by long bouts of unemployment punctuated by either underemployment or grad school, and that my previous experiences with VR about fifteen years ago never culminated in a job I did not find myself, with which I remained underemployed for my education and skills, though I was able to pay bills if I lived frugally. From others I know, these experiences are all too common. My previous VR counselor informed me that there was nothing that could be done for me from an educational perspective because I was already a college graduate with a masters degree. Having since attained an MLS, I am almost sure the answer will be the same, but I will make and keep an appointment anyway in case any other suggestions arise.

Seventy percent of persons with disabilities remain unemployed, with underemployment problematic for individuals as well. Broken down by gender, the statistics are even more alarming, with seventy percent of disabled men and ninety percent of disabled women wanting to work but unable to find a job. All things considered, I have been relatively fortunate. Having degrees has opened doors that would have otherwise been closed to me entirely, but there is still much to be done to improve the employment situation for persons with disabilities, a subject of future posts here.

In my case, I've worked in a variety of jobs, written articles, essays and a book, acquired other skills and focused my time in the most recent graduate endeavor on the efforts of libraries, primarily public and university, to provide services for persons with disabilities and the education of the librarians serving them. Additionally, I am completing a special collection project for a specialised library, functioning as the project archivist, something unanticipated and which I hope yields a paid position somewhere once the project is completed. My progress in this area has been hampered by ongoing medical issues, consequently I remain concerned over the employment issue. I am also on the fence about going on for a doctorate at this point.

The home front has calmed a bit as my cats are adjusting to medication and the fact that a portion of the apartment is off limits to them all the time now. This is allowing me to catch up on much-needed sleep and helping tremendously with my energy and outlook.

Attention Walmart Shoppers...

After slowly acquiring an eclectic list of household and personal items that needed replacement yesterday, I knew I would hie off to the nearest discounter in pursuit of all things in one trip. That meant Walmart, a store I loathe for its business practices, and visit only rarely.

The next issue was whether to leave my folding manual at home and risk looking for an in-store scooter. Opting for the scooter because the manual chair, dubbed Bertha Butt, is a bit heavy to lift in and out of an average trunk, my adventures Walmartesque began with an employee on an apparent smoking break outside the store. When asked whether a scooter was available, he rolled his eyes and shuffled off, stubbed cig in hand, returning several minutes later with a specimen that looked as though it had been left in a ditch to die.

Undaunted, I climbed aboard and slowly made my way in, not because the scooter lacked speed but due to the crowds of shoppers coming in and out and the fact that most of those on two legs took no notice of the rather square, squat, motorized vehicle driven by yours truly. Had I a horn of any kind, it would have certainly expired from over use.

After only a short distance, I was stopped by an older gentleman in the traditional blue to-die-for Walmart vest, who requested that I go sit in the nearby snack bar while my scooter was put on a charger. When I explained that the scooter was in fact charged, he asked why I was stopping and starting. I gesticulated towards the throngs of two-legged humanity swelling the isles and exits with nary a glance at me. He then scratched his head, shrugged his shoulders and turned his back, signaling that our less than fruitful conversation was over.

Winding my way through the increasingly cluttered and disorganized sections of the store took about for times longer than it does when walking. Why??? Stuff is everywhere and when one isn't dodging people with no sense, displays and stacks of items, many of which are disarrayed or unreachable, loom large, threatening passageways. The lines to pay and leave were no better, and had a friend who accompanied me not directed traffic in the parking lot, we both might have been creamed by a woman on a cell phone driving an SUV.

This less than leisurely experience consumed two hours of my day, minus travel time, and sadly, is not uncommon, as other bloggers including my friend FridaWrites, have pointed out. It is also unfortunately not as safe as it might otherwise be.

In this instance, the retailer could do several things:

-Widen isles and organize merchandise so that it can not topple over.
-Hire and train more help to keep lanes clear and lines moving smoothly.
-Utilize a paging system announcing that shoppers should clear lanes for motorized scooters.
-Ask that local police or security patrol the parking areas for unsafe drivers and provide marked crosswalks and signage so that auto users understand that individuals in other wheeled conveyences have as much right to cross the parking areas as drivers do.
-Provide better customer service training to employees, including such things as making eye contact when speaking, whether or not they are speaking to a TAB or a disabled person, responding politely, and encouraging their walking customers to be aware of carts, scooters and wheelchairs.

Do I think these things are likely to occur??? Not without a lot of pressure, and even then, not likely. Being persistent and an advocate (read agitator often) I will not give up as I do not like risking life and limb in pursuit of toilet paper.