Post Thanksgiving Saturday

So far it is been a great Thanksgiving weekend. It's been quiet and that's not bad.. DD and I prepared a complete Thanksgiving dinner just for the two of us. We had everything turkey, mashed potatoes and gravy, green bean casserole, Wine, cherry Jell-O and of course pumpkin pie with whip cream. We watched a couple movies played on the Internet it was a fun day. This was a year when all the families had other options going or we had not heard from any so we just had a quiet dinner by ourselves. Don't stress no deadlines just the two of us. Who knows maybe next year will do more.

Struggle

I struggled all day yesterday, and in fact I have been struggling all week and I really don't know quite what to do except to go through whenever I have to go through. Day before yesterday was when my issues of uncontrolled spasticity begin to-be significantly relevant. For the past couple weeks maybe months the pad on my left arm rest of my power chair has begin to disintegrate. Now I realize I am the big reason for the disintegration of is equipment piece. I rely on this piece heavily pull myself up to a sitting position after slouching in my chair or when spasticity slides me out of my chair. Typically, I can hook the back handle my chair and then pulling on my arm rest again set myself up to push myself back. I think in fairness to me last week I, under my own initiative, made arrangements and made appointment at Alpine Medical. Of course I was told they did not have the armrest and stock and then proceeded to do an inventory of what my chair seem to need. Again granted my chair is in pretty rough shape I should be taking better care of it but still I wasn't in the mood to be up sold on equipment I may or may not need just to meet my present need of the armrest. Anyway no armrest and was back out in public trying to maintain myself as independent as possible with damaged chair.

I finally have a major spasm while I was holding on to the arm rest and the spasm was so fierce I pulled the armrest from the arm of the chair, shattering the plastic base that held it to the bar on the armrest. They were jags a sharp plastic explosive this time. I was not an issue to me but sure freaked out physical therapy staff when they saw what happened. Actually it was K I K I the OT, who jumped on the occasion and wrapped up my jagged armrest with great redtape I did appreciate that. Later that same afternoon my right leg had spasmed out and I was struggling to pull it back onto the footplate and one of the new PT's actually stopped and asked if he could assist and I said yes. Now the best assist is to have the person I'm physically place 1 foot back of the foot plate. Now to me this is no big deal but I have come to realize many people on the outside don't like touching other people – – people are so weird. But anyway Mark the new PT assisted me in repositioning my foot and we made a funny little bond.

So yesterday I called Alpine medical to see if any movement had happened on my order. I didn't care about anything except the armrest of course, Which I was told was not in stock. Well, of course nothing had been ordered there always waiting for the insurance. I just want my equipment fixed and to get off my life. Well I was surprised when talking to the tech, who was not the person I spoke with earlier, that the piece I wanted was in stock and I could come down and he would install it . So that is exactly what I did and that is exactly what he did and he did not even charge me installation time which is totally different than any of my previous experiences with Alpine medical.

The equipment repair has not stopped my spasms but has allowed me to deal with the spasms a great deal better. I feel part of the problem is the angle are playing of my foot plate which I have damaged by digging the foot pedals into the crown of the street which sometimes do if I forget to tilt my chair back a little. This may help If s this repair happens at an affordable price.

I hope Something happens because quite frankly I'm exhausted and him the day pulling l myself back into my chair something got give. I'm getting tired just thinking of my day ahead.

Spasms

Spasms getting worse,yesterday I needed assistance several times to free my left side and get back in my chair, while out in the world...more to come...

Thanksgiving Week

It's officially Thanksgiving week and I must admit Thanksgiving week is a bit different when you're in retirement. If I were working I would be excited at the idea of a four-day weekend. For the longest time while employed, I managed to take the Friday following Thanksgiving off as vacation, long before the Friday seems to have been incorporated into the Thanksgiving holiday as is today. So I was excited, seem work slowed down a little, many folks in the office would take time off for the holiday as would many of the professionals I would work with and other agencies and programs. So, little got done aside from showing up to work and in many cases enjoying treats brought him by staff. Now I am symptom excitement but not the same. Due to the holiday my schedule will change since the physical therapy unit I have my Wellness program at will be closed the Friday following Thanksgiving. So if I want my three days of wellness I'm going to have to cut some time I put in at my volunteer position at 211 on Mondays. And I think I like that. Again, for whatever reason, the phone calls at 211 or the frequency of calls seem much slower and my need there is much more in question. So tomorrow, Monday, I intend to just work till 12 o'clock then head out to Wellness. I know I will be three hours early so what? I'm enjoying this time.

So, I'm giving myself five hours by checking out early from 211 and that's okay they will survive and I will be able to get up early, get my latte go into 211 see my buddies take a few calls and leave. I will take myself somewhere for lunch, maybe or just hang out at the library or just wander either way I feel excited. I feel like it's going to be a holiday. Dianne And I were making the shortlist for Thanksgiving dinner. We will be alone this holiday that's okay. We're going to bake a turkey breast, Make dressing, mashed potatoes and gravy and of course pumpkin pie I think it's going to be a fun holiday I am feeling excited. Maybe we'll go couple of movies from red box, Open a bottle of wine kick back and enjoy the evening.

Just Remebering

Notice the leg in this image, on my right leg...

Following my accident, hospitalization, and physical therapy I returned home and began the slow process of living in my new life with a disability. I don't remember being too frustrated about the whole disability thing. I think I was too close trying to survive this cataclysmic event in my life. Each day I would get up, do my bathroom routine which included showering transferring out of the shower back into my chair, then into my bedroom where the first thing I did was dry off my penis and mess around with it enough to get as much an erection as I could so I could apply skin glue to the penis and then roll the external catheter onto my penis squeeze out as much air between the phallus and the rubber because the seal created would be my first line of defense against leakage of piss when I urinated. After the skin glue and application of the rubber two strips of tape were applied round the shaft of the partially erect penis, hopefully securing the seal. This external catheter, which was pretty much a rubber attached to a clear plastic tube which was connected to a leg bag which I would then attach to my leg with rubber straps. I wish I had images of this but in those days that would've been forbidden but graphic nonetheless and a great example of this whole process.

I did this routine roughly for the next 40 some years until I begin have an old guy issues with my prostate and urinary problems. I just couldn't piss. There were visits to my primary medical person who in turn referred me to the dreaded urologist! I had done excellent in the 40 some years past life trauma to avoid his personal cost. Once I remember right after I had gotten to rehabilitation they removed the indwelling catheter I had from the hospital which I remember house in great pain. There was such great pain, or I thought that was such a pain I would not even consider the medical profession sticking a piece of plastic of my urethra and then inflating a balloon so the thing would not come out. Again, it seems they tried anyway but I crashed and thrashed so much they all backed away and came back with the idea of a Texas catheter or external Catheter. I was amazed and blown away when once again I was introduced to catheterization, this time intermittent catheterization meaning you catheterize yourself. I braced myself for the huge wave of pain I knew was coming as they brought the lubed catheter to my exposed penis and slowly thrust plastic and inside and pushed the catheter up my urethra. There was no pain in fact there was great relief as the inner pressure of the bladder immediately receded I dream about 800ml, probably the first time in decades my bladder had been trained as it should have. There was no pain just relief and a major page was turned in my life story.

I can't believe how long I played the game of gluing my penis every morning to latex prophylactic and peeing into a bag, granted concept of self catheterization had not yet been developed, and I think I was too active to try to survive with an indwelling catheter. Still I wish someone had stopped me along the way and at least introduced me to the concept of self catheterization… I wonder how my life would have changed.
Just a note, this is not what I started out intending to write about, it just sort of came out.

Maintenance Day

Blog November 20, 2013 – – Wednesday

I'm waiting patiently. I have an appointment at 11 o'clock over at Alpine medical to have my wheelchair looked at to see what it will take to have my chair more bearable by me. It's just little stuff this day I need a new armrest on my left side. I hope I'll be able to drop In have somebody see the problem and Install another. No big deal I'm afraid they will look at the problem try to review my insurance order in the part then install. This is the take weeks I don't have weeks. Probably more important is that I'm going to have them look at my foot pedals to see if there's any repair that can be done to fix the problem of my feet slightly off the foot pedal. This didn't bother me much until a couple weeks ago but I think I bounced the foot pedals off the street stressing out the connecting arms of the hangars to the main wheelchair. I again feel they're going to want to replace the connecting posts which will be just about 100 bucks apiece which is just a pain in the ass. I have not been impressed at all with the service of this provider, Alpine medical.

Alpine medical begin providing durable medical equipment and support for my insurance provider earlier this year. Until then I had been receiving services from an outfit called Magic Rest Medical which had some sort of a meltdown systemwide and my insurance provider canceled services which set in place irrevocable Consequences which caused them to collapse. So Alpine medical swooped in and took over all their accounts one of which was mine. They just don't give the same service as Magic Rest. So I've been slow to go to Alpine medical any kind support until I absolutely have to and now I'm there.

I'm still significantly involved with my Wellness program. I'm beginning to have doubts that this program may be the best option for me but I continue to go even though my service seems to be diminishing. I can't blame the program I knew that the physical Support was limited, With two therapy aides. These two kids do a great job but they're getting overwhelmed as more and more folks enrolling Wellness. I'm just finding I'm getting boned off equipment and not being able to get access to equipment which is not accessible for long periods of time. I really have always 60 min. to do my workout because the time of the day. I work out between three and four o'clock and really, want to get home during daylight if I can. If I go over four clock I really*get home very late and I am traveling in the dark. I'm still considering very seriously investing in an ergo meter, hand cycle device. The trade-off is, if I get such a device, I will have less contact with humanity than I already do, which is not necessarily bad but the easy way out and something tells me I need to keep connected/involved in life.Cancel; Still There Is a Very Positive Feeling I Get to Having This Equipment at Home and Being Able to Exercise Whenever I Wish Especially on Weekends..

So Dianne will drive me to Alpine Medical world begin the first part of my day with my wheelchair evaluation then killed time until Wellness this afternoon at three o'clock.

All in all I really am beginning to enjoy my retirement as it is.

Charge Me Baby

Blog November 14, 2013, Thursday

I am not sure what I got myself into now but I feel motivated to make the next step. I've verbalized for some time that I need to have access to a charger out in the community when I am out rolling around in my chair. I think or seem to remember I have groused on topic a lot when the first chair I ordered did not have an onboard charger. I was beside myself, I could not believe the direction powered mobility had gone. I've had to accept this move but I have not appreciated the move. So, I figured out a life that allows me to use my power chair and not be so frightened of running out of power while in the community. This means that I drag along with me a battery charger. I found a small trickle charger at UCAT,Which is slow as molasses but would do the trick if I desperately needed a charge. I keep planning to get a more functional charger to carry around but I have not as yet.

The last decade or so I've been quite involved in the area of assistive technology particularly in the area reutilization of assistive technology. I worked with projects that have tried to reintroduce used equipment, that is good equipment, back into the community of folks with disabilities. Long story short this project rendered a great deal of used but good battery chargers. Currently these chargers are sitting stacked like cord wood at places like Utah Center for Assistive Technology,Independent living centers across the state and many vendors of durable medical equipment.

I wish to access these battery charger stockpiles and move these valuable pieces of equipment to the public domain.If I had my way I would place these chargers and facilities like public libraries, where the chargers can be checked out like reference materials, a couple hours of the time and not leaving the building. I chose libraries because they already have a checkout system in place and libraries are centrally located, wheelchair accessible and generally staffed with aultristic folk. Libraries aside ideally other charging stations could be located at scepters of public transit like train stations on light rail systems, hospitals, malls, theaters and food markets places frequented by people who use power chairs.

I finally got professional physical therapist, who is respected, to believe in my program. He even carried through with my request to get a couple of chargers at Wellness program offered by University of Utah sugarhouse physical therapy clinic. I also have the support of the director of the spinal cord injury program at the University of Utah was also my primary physician. I think I can now get the attraction I need to move to the next step of implementation. This is such an easy task I hope it does not become mired in political mud.

I currently am bringing back the Access Utah Network Facebook page and I plan to use the page to develop interest in this project. I will also begin visiting with members of the A T committee to see what kind of support I might get from these folk. This project is so needed and so doable it hurts.

I am really trying not to let my cynical side take over, this is hard.

Freedom!!

Dr Sheen

I was surprised but pleased yesterday when I checked messages on my cell phone and found a message from E cardio, the company that does the heart monitoring and whose device I have worn I was done with the neutral (for the past 30 some days. I was done with the study, the company drone left a message on how to disengage from the machinery, pack materials materials in the boxes and send them back to the mothership. Now, I have to wait to hear back from my cardiologist Dr. Sheen. I'm pretty sure the test revealed nothing of damaged Or broken heart. This is okay by me.I just

I just don't know how Dr. Sheen is going to react. I mean really this whole exercise, 30 days, is finally done I bent to his well. I think I could rendered as much information in 10 days, even seven and got just as much information regarding my own ticker. I still think he was just pissed at me for coming back before the year's end. Now having said all this, let me go on the record to state that I believe Dr. Sheen is probably the best cardiologists in the West if not the oldest. This guy is ancient, he is a fossil but I can tell he knows his stuff and that it was probably a miracle that I got the cardiologist that I did. I think this guy has probably seen and done everything a cardiologist can do. True he seems a bit rigid and that's okay. I would rather have him push his educated well if that will make me a healthier person or save from death.D rSheen's actions may will catch a problem that I didn't even know that I had.

So my 30 day struggle is over. I broke the monitor just once and E Cardio had to send a backup monitor selected finish my trial. I thought it was kind of weird that 30 days is 30 days regardless of any time during that period that the monitor was not sending data for one reason or another. Again, I don't think it really matters, I think they had enough time to get the data thy needed, probably well more than enough time to pull an accurate conclusion. So, I wait to see what the grand old cardiologist is going to say. Until then I'll continue on with my life doing Wellness and figuring out what else I am going to do in the area of volunteering.

More Change… The New Normal!

I sense more changes heading my way and you know what? That's not half bad. This time I believe the change is coming for me at least I believe it is but my naivety still great. I have almost made up my mind to discontinue my volunteer service to 211 our United Way. The organization is just changing too quickly or if not to quickly to a direction I'm not comfortable with our comfortable serving in. This does not mean the organization is bad, far from it. I guess since the need that I once felt to be there on Monday mornings are Monday all day is no longer there and this time perhaps for me to Move On. I don't know what I will do next if anything but I want to do something and to do good. I've briefly spoken to the folks at University Hospital regarding volunteering I still need to talk with to volunteer people at I HC medical to see if there's something for me there. Either way, something is going to happen something wonderful.

I am nearing the completion of my” 30 day”heart monitoring. Actually when all is done, actually 40 days in the harness, and I will be glad to get this box off my body. Experience is not that bad just very annoying but I think good for me in the area of commitment to giving something stupidly done. I really do believe this whole 30 day thing has been a sentence, a spanking if you well for being a prick to the medical establishment I. E.” The great Dr. sheen”. The old man , lesson learned: don't waste the old man's time.

Do I Really Want To Know??

When things begin to repeat themselves in my life I take notice. I don't know if I believe that the great, as in capital great Someone, is trying to tell me something but usually I slow down and at least try to see what's happening. I believe this is happening now, to me. I am being shaken awake and I need to do something.

Twice now maybe more, there have been articles on NPR about adopted kids searching out their birth mothers. I have written about this in the past just a little bit but I think I'm being sent messages and that I need to be doing something about this. One NPR article was interesting in that the whole family( adoptive family) new about the adoptive parent the entire time and  the adopted kid was completely in the dark. So I wonder if my brothers and sisters, maybe even my cousins let alone aunts  all know who my birth mother is or at least how to get a hold of her! I would not  be surprised. So now I must consider "do I wish to explore this path"?. If I do, It seems the most logical person who would know of my birth mother's existence would be my aunt Elaine, my mother's baby sister. This sounds weird I know, but my adoptive mother lived with my grandmother a number of months before I was born.Now, you can't tell me that the sisters and their mother don't talk especially about something like this. So, when someone lives under the same roof as you are your mother you'll get to know them and I can't believe, forget about them once an event passes of this magnitude, the magnitude of my birth and being separated from the person who gave me birth. I am really trying not overthink this but I can't help myself sometimes. But I must take into consideration is the power my mother/mom held over people when she was alive and how strong this is from the grave, I don't know. So even if family members knew this information I don't know if  they would render this informaotion up. I believe someone would if, I cornered the right person at the right time. I just have to methodically start the process of going down family members to get the answer. Again, the big drawback is do I even really want this information, or do I want The information bad Enough to expend this kind of energy and how viable with this information be were it secured? I think for my children but if you the information would be valuable as far as health questions and being able to better present an accurate historical medical account of ancestral information which might be helpful to the progeny. I don't think I want a reunion of those I never knew, I cannot say this hundred percent but the thought does not intrigue me. I don't know if I want to bury any more parents I mean it's one of the main reasons I don't get another dog. They die too quick.

I must consider the options more figure out how to play this hand I have been dealt and do I even want to play this hand.

Snow Day Ponderings

Snow fell during the night, just as skiff but enough to make people cautious and overprotective. Today is kind of a weird day for me. Yesterday, was my usual day at 211. So I go in and a number of weird things happen. First, Liz, who is the new director type at 211 pulls me aside and tells me that because call volume has lowered or slowed that maybe I should think about not  coming  in on Tuesdays. I have been going in on Tuesdays for a couple hours until my meeting with Assist Inc . which starts at 11 o'clock. I advised Liz that I come in early on Tuesdays to kill time before my meeting. I like being down town early in the morning and being up and early.

So I returned my phone calls. I'm probably an hour into my calls when suddenly my computer station begins to the fail. Every time my phone rings  I received a sharp shrill sound in my ear. I had to go on  “ technical” to see if the IT guy could resolve the problem. Not long into this problem the floor lead pulls me aside and she tells me that if I did not want to come in on Tuesdays no problem. The frequency of calls are down so you don't need to come in. So I begin give her the same diatribe I gave to Liz. In the back of my mind I'm beginning to think maybe they don't want me here on Tuesdays. But I explained to the lead that I'm just killing time, she backs off insisting that it's okay she just wanted let me know if I didn't want to come in, no problem.

So the rest of the day these comments sort of festered in my head that by the time I got home I had resigned myself to the idea,” screw them” I don't need to waste my time on Tuesday mornings, low-frequency calls. I can sleep in and still going to me by assignment at System Inc. on the advisory board.

I called Dianne to let her know that I was probably coming home , she suggested that I go into Wellness that afternoon and work out then. Typically I am at 211 all day on Mondays. But because IT had not been able to resolve my computer problems, because IT could not resolve the problem with my computer, I was turned loose about 11 o'clock in the morning. I had all day so why not do wellness on a Monday?

 I had time to kill a couple of hours, so I figured why not go up to the University hospital and see what their volunteer needs might be. Maybe it is time to move on. So I jumped Route 2, up to the University hospital. I checked in with Volunteer Services, who gave me the lowdown and then I went to the cafeteria, what a great day!

Snow fell during the night, my Tuesday commitments evaporated, the day is cold and I am home enjoying this free day. Today I'm exploring options and writing my letters.Snow fell during the night and I'm enjoying my free day.

Ramblings About Options

Wednesday was my light workout day at Wellness. On this day I supposedly do less heavy lifting which supposedly gives my muscles a rest. On this day I do the arm bike, I do my usual 30 min. plus cooldown and then I work with these colored bands which I stretch against an supposedly gives my arms a workout just not as heavy as with the weights. However I've noticed as I've gotten to the green band which seems to be a little harder to stretch against. I'm really straining my muscles. Wednesday I think I strained my AC joint on my left side which has been causing me some pain and difficulty to the point that I elected not to go in today and give my body a rest. I of course felt guilty for shirking my duty to my body and I kind of felt bad for the staff for not showing up but really they don't care that's okay. I am at wellness for me. So I'm using this day to rest .

So this posting dovetails with the last blog posting. I am wondering how much I use the Wellness program as a form of socialization and if I should develop this home gym like we are considering, I would probably go in less to Wellness and work more at home or at the Holiday Lions Recreation Center. DD has been researching the recreation center and we have both been impressed at how much the center has to offer especially for the amount of money involved. I am particularly interested in the recreation center since they have a very nice, heated pool which is majorly accessible. The recreation center is really not that far from our home 1015 min. Besides the pool the rec center also offers access to free weights, machine weights and even a quasi arm cycle. I'm not sure how much I would actually use the weights at this facility as much as I would use the pool.

What really surprised me when thinking about the alternative health options was that in spite of myself I think I would miss some of the old farts at Wellness. There are a number of fellows close tot my age that come in on a regular basis. I was not going to engage with these folks and just focus on my Wellness but that did not last long and I have gotten to know some of these folks and it's interesting. It's interesting to have other males my age with disabilities attending this program that I can actually communicate with if I so desire. I don't know how much I would want communicate with these guys or you see them on the social setting outside of Wellness but the option would be there and these are folks that I know now. They have become part of my orbit and social network.

We will have to see what happens in the next couple months and see if we actually follow through with the equipment we've been talking about. The drawback of such equipment is the footprint they will take up in the house. There is little room in the house as of this just for us but the opportunity is there now to be in control of my weight and muscle mass. It is not important how I maintain these items what is important is that I do it. Then, if I have to force myself to socialize that will have to be a hurdle that I forced myself to jump over. I cannot understate or overstate how important the wellness concept is to me right now. Wednesday was my light workout day and wellness on this dayOn this day I supposed to do less heavy lifting