Busy Days

This week is been unseasonably cool and I don't like that but such is life. I guess it's only natural now the rear nearly out of July. I don't know if it was the cool weather or what but I noticed the figure ground effects begin to change is just a little bit easier to imagine fall taking over the Wasatch front and new season. However, it looks like the hot weather will return today and probably will remain so for the month of August

It's been a busy week which I guess is good since I rattle about Not having anything to do, was more or less a maintenance week. I went to Wellness a couple times, got my eyes examined in yesterday we went out to lunch with G B A2, Dianne drove me to Wellness and then we went to Bernie Sanders telecast At Westminster College. Oh, we also shopped for new cell phones over at Best Buy.

I got the word from my eldest son couple days ago that the hammered finally dropped where he worked and that he no longer had a job. This is bad no question but what is even worse is that he worked at a major cell phone provider and had had me and Dianne on his family plan for a number of years. Is been great we have not had to pay cell phone charges for years. However those now thing of the past. Just one of putting the major shout out to Mark A, thanking him for the support of all this free cellular phone use. I wish him well and speed in finding new forms of employment. We had not started out thinking we were going to shop for cell phones but since we had a couple of hours before the Bernie Sanders thing we figured why not check out the Best Buy options and more than anything else have one of their folks explained to us the ropes of cell phones. We finally got Greg, a young but knowledgeable geek, to assist us in our cell search. The little guy knew what he was talking I sort of felt bad barraging Him with the host of technical questions and With no real intention of purchasing the program from that particular store. If we did purchase our cell phone plans from a Best Buy it would be the Best Buy in our neighborhood. We were just using the lad. We still need to check with Costco and some other providers but we need to move quickly since the plan we have now will expire tomorrow. If I were more courageous person I would even consider not having a cell phone. But too many people in my life and I guess me included feel a cell phone for me is imperative as far as having access to support in emergency situations.

I must admit however that it was kind of fun looking at what cell phoneshave to offer now. I think I'm going to steer away from getting the military grade, heavy-duty, nondestructive cell phones I'm looking to get and look for something more user-friendly and fun. I am kind of amazed at how much power and savable space one gets with a basic plan now. We just have to decide and get going on our new cell phone plans. Kind of excited. Also kind of exciting is that I purchased day entry-level DVD player yesterday at Best Buy Dianne hooked up last night and it works now at least I can use red box again and enjoy my old DVDs.

By The Skin Of Our Teeth

I think we're going to make it! Beginning last week you might remember, that we significantly cut back on the amount of home health attendants coming out to help me in the evenings and in the mornings.We are currently having my older brother stop on his way to work in the mornings to help me dress and transfer to my power chair. In the evenings we have one attendant command three times a week to help shower. Dianne has taken up slinging me up, inserting this suppository and then getting me to bed following my bowel movement. On the weekends we've given my brother those off and believe it or not we've been doing pretty good. When I raise the bed all the way out Dianne does not have to bend down to get my shorts on and shoes. We again raise the bed up as high as it will go which greatly assists in doing a gravity transfer from the bed to the power chair. Luckily the power chair has ability to tilt back significantly And I can wiggle myself up to the chair.. I still have to be careful to make sure I have my shorts pulled up as high as they'll go otherwise they tend to crawl down the rest of the day. This is okay for weekends I think will do all right. Again the savings are significant.

I'm still a bit concerned as to having my brother so involved with my life but really who else better. He reminded me when I asked him if he thought this was too intimate a job and looked at me sidewise and said don't you remember when you looked at our house? I dressed you put on your Texas catheter every morning and put you to bed at night. What's weird is that I have little memory of that happening. Oh I accept that it had to happen because really, I was not functional enough at that point in my life to take care of myself. Putting on a condom which is glued to the penis is just a question let alone dressing myself. So he definitely knows what he's getting into. And like he says as long as he is on his way to work and the job of getting me up is fairly easy, we visit a little but actually we are totally focused we could probably do this procedure in 7 to 10 minutes he could be on his way. And hopefully the weekend gives him a bit of a reprieve not that he sleeps in, mind you but still just one less thing one has to do on one's time off. I hope he will be honest enough with me to let me know if this assistance becomes too much of a burden. Be sure appreciate it..

I still get the feeling that we are getting by only by the skin of our teeth, just cannot fathom what challenges are on the horizon. However I need to have faith all things will be done as they should be done and I have to put my faith and trust in a higher power. Which I can do it is just scary sometimes.

Fire!

I'm smack dab in the middle of a holiday weekend it's a far spent pretty good as far as these things go. 24 July is a major Utah holiday – – kind of like founders day for the state of Utah. The actual day was celebrated yesterday but because local population wanted to make the most of it is also being celebrated today by a number of morning Pioneer breakfasts. I've been threatening to go last couple years. The breakfast is held up the local Mormon ward house. It is free and pretty much a neighborhood event.. Local population of the neighborhood are the only ones really go an occasional transplants from out-of-state who may not know better. Actually, aside from all the Mormon overlay is not a bad way to meet the neighborhood but beware it's also a way for locals to get the foot in the door open it up for missionaries and other Mormon traditions.

The 24 July holiday The relatively minor holiday unless you live in Utah. Last night, because I have to go to bed early because of my need to have others assist me I listened to the explosions of the nighttime fireworks well into the midnight hour. It's amazing the length neighborhoods go to celebrate these type of events. Dianne and I watched movies and got to bed. I was surprised how quiet the neighborhood was yesterday I guess most of the neighborhood works for Gentile employers and do not get the day off. It felt like a holiday to me but maybe that's because I wanted it to feel like holiday. We did Hassan excitement neighborhood when all of a sudden a big yell fire engine came zooming down the street silent just running lights and parked Itself down at the cul-de-sac at the end of our street. I hardly know anyone down there so it's always weird when I roll their. But I did go down to see what was going on and there was a fire behind the houses between the houses and the TraX line. It was entertaining watching the fire guys rush around pull out their hoses run through the neighborhood actually run through people's backyards in order to access the fire. It was a little surreal sort of like a movie. The postman was on his rounds he continued to deliver his mail regardless of what was happening around him. He would walk up to a house put the mail in the box then negotiate himself over and around fire hoses bleeding water, surging toward the nozzle. I was entertained as the fireman frantically searched for then tried to hook up hosesTo the fire hydrant in the cul-de-sac. The firemen first took off both caps off the hydrant and dirty rusty water gushed out onto the pavement. That happened for about a minute or two for the firemen figured out they had to turn the water off and then hook up the hoses go to work. The process is pretty straightforward and soon big old hoses filled with water snaked all over the cul-de-sac the neighborhood. It was kind of fun, did not take the guys long to suppress the fire and no property was hurt that we could see. No one knows, at least I don't know what happened or how the fire started. As I acknowledged earlierthe day had been a very quiet . I hadn't heard any fireworks, or firecrackers at all so I don't think it was firework related. I saw a lot of smoke as they put out the fire but no flames and I guess that's cool. They were soon finished and gone. The end of the excitement of the day.

Later during the day I went over to my brother's home and he fixed my power chair which has some issues. It was great spending time with my brother as he worked on my chair.

Mexican Train… Please

It's been a long day and it is because I made it a long day. The only thing I had to do today was good and a Wellness and do my workout. I said goodbye John this morning my faithful morning week morning attended. John was supposed to get here from 7 AM but he hardly ever made on time. John was always late but I like him anyway. He talked a lot about stuff that was interesting to me mainly his other interest which was real estate and trying to sell his winter ski packages. I always like to ask him about his weekend and what he did and we did it with. I think I'm going to miss John most of all. Anyway as he says now he well have more time asleep in the morning. I got some breakfast missed around social networking and did the online cryptic quote. That being done Dianne indicated she and Bridger were going out for the day so I was gone. Got my travel stuff and was gone.

Since I have the new chair I seldom wait for the bus anymore I took the back road, behind the house over the hill and down to the train at central station. I rode inbound to 21^st South got off the train jumped 2100 eastbound and got off at 11^th East. Stopped in at whole foods got a slice of pizza for lunch which was a bad for store pizza it was pepperoni a small piece but fill in enough. Then it was over to Sugarhouse rehab Wellness program. Avery was the assistant today she's very good, efficient and focused and makes it easy to get in and out in less than half an hour. I did my routine did the paperwork and was gone. I went through BBB looked at mirrors and other stuff. That I decided I would see my friend Greg Naccarato. Greg lives in a long-term care facility – – nursing home! I thought I had the address but I had it written I was off by five streets almost. This facilitated the taking of two buses and traveling some distance power chair. It took me a while but I finally got To the facility. Took me met the find Greg… Greg was in the family room I think the family room is a place where they play games put together puzzles a place in the other years was called the day room. So I got there rigors of the table with three or four other seniors and then what looked like one staff and her preteen daughter. They are playing some game begins just ending and I thought I'd get the spend little time with Greg but they launched straight into a game of Mexican train. I kid you not the game is called Mexican train. It is some sort of domino game. I was a little embarrassed for the two folks who were blatantly HispanicBut they're all just getting into it… Mexican train.. I had visions of some kind boardgame where folks who are undocumented rode the train rolled the dice to see who got closest to the border are even over the border. I came home and checked it out and indeed is again called Mexican train unbelievable. Will Greg never stopped playing so I figured he didn't really want to visit and I sure didn't want to stay there any longer than I had to. It's a nice place and everything there were cookies everywhere all you had to do was lift up the glass covering the snitch a couple.

I had done my good deed for the day I was ready for the trip home. Made the connections and home I am. Got a few minutes before I began my hand bike workout on the Saratoga silver. Mexican trains please.

As It Currently Stands…

Yesterday our last evening I finally told my night staff, Mark, that come Monday I would no longer be using him or anybody from the agency provide my evening home health services. I was sure to couple's services along with the rest of the services agency. I did not want Mark to think that it was because of him that I was discontinuing my services which is true kind of. Truth of the matter is I cannot afford private pay home health services as much as I wish that I could. But also since I was discontinuing services anyway I dodged the confrontation bullet having to tell Mark that I specifically did not want him to provide my ongoing evening home health services.

I know I am a poor manager of people. I never have that good at directing folks to just a weakness that I have. I have noticed however in the short five or six months that we've used home health I've gotten somewhat better at telling the staff of what I want or what I don't want or how I want it done. Maybe, if I had Home health over the longTerm my managerial skills would improve and maybe then I could generalize it to anything else I had to manage. All I know right now would be hard to fire somebody if I had to.

Were I a good manager I guess I would work with my staff who had deficits and bring them up to an acceptable standard but I don't know really how to do that. I'm sure there's a manager skill craft video, training program, somewhere that teaches the skills but I haven't found it yet or had the patience or the inclination to pick up the skills. My wife, Dianne, is a great manager people I have noticed. She is managed large numbers of people in her past… And I've seen snippets of her skill set and interacting with people who work for us over the years we've been together. I admire her skill set in her ability to coax people to do the things they need to be doing to be successful in their jobs.

I was kind of good and surprised last night When Mark showed up to provide my attendant care for the evening. When we had talked to the agency we had essentially told them we no longer wanted Mark as my evening staff. Tonight, if he shows up, will be the last of the week that he provide services. Tomorrow he works another job and I have another person providing services. So if he shows up tonight I will And do the minimal amount of social interaction and be glad this is the final evening. I know it sounds cruel but just uncomfortable with my evening situation As it currently stands.

The Time Has Come Today...

I've been kind of dragging my feet, getting in touch with my older brother who has volunteered to help me get up in the morning during the week allowing me to cut loose of my home health care folks. This will greatly save money for Dianne myself. I did not call Carl directly that sentiment email over the cell phone later in the day I got a return message that he was still open to his volunteerism and that we should contact each other to discuss the details. Later in the afternoon I did call my brother and we decided that he would provide five mornings a week of assistance which greatly assist our financial well-being. We are also cutting back the home care assistance in the evenings as well. So now Dianne well essentially help put me to bed and provide some of my bowel management. With this done we called Home Health Options-to inform them and ask what the process was cutting back assistance we need. We want to keep our options open particularly if we have to come back after our experiment of independence. We decided that we would continue to use HHO but only use them three or four times a week, primarily for bathing. Home Options Indicated that would not be a problem just to let them know. We decided we would basically begin the first of the week, this coming Monday. However we did include that we want to change my nights support for the rest of the week. The guy comes in Monday through Thursday just is not cutting it for us. I am not sure what it is but it is just not a good fit.

So, this morning I let the morning guy know that after Friday I would not be using him anymore. This is kind of hard because I have come to realize how codependent this project is. I need sports services but even as much as I do I think the attendants need us even more. Especially the ones that provide services on a daily block – – like my night guy who provides my night care from Monday through Thursday. It's only four hours but it's four hours he can depend on. It's four hours that well no longer be there for me. I hope he will be able to pick up the four hours somewhere else – – – I'm sure he will. Still it's not my worry – – maybe a little bit – – really out of had to fire this guy anyway regardless of going to more personal self-care. I've never had to do that yet and may have been good for me but just the same I'm glad I dodged that bullet by the poverty I'm having to experience by the amount of home care I'm using.

I think of all the folks I am using for home health I think I'll miss my morning guy John the most. I've talked about him before, how close he is to my age and his struggles within the private sector trying to be a real estate tycoon. It's interesting to peer into his life and see him go about his days. I would not say we have a great friendship probably more of an acquaintance which I'm sure will disappear at the end of this week. However you never know this morning I couldn't find my cell phone and we tried to use the “call the cell phone trick”. So now I have his phone number. I don't know if I've ever really consider having a social function within like dinner or a drink but he's truly interesting, interesting to me the kind of think I will miss John’s morning’s input.

Monday Musings

The hot days are back I am just in from my workout at Wellness and I think it went pretty good all things considered the best part was being able to be home before 4 o'clock  and still have time to do something before the witching hour of 8 o'clock.

Actually the day was pretty good so far, Bridget called yesterday Evening and sounded like she wanted to do something Today. And I figured why not the been a while since we were together so let's check out lunch. We ended up going to HD barbecue. Oddly enough I had been talking it over this morning with my morning attendant who is been talking about this place for a couple of weeks. It seems he has property very close to the barbecue joint so I told I would check it out out too. The place is okay I had the brisket sandwich and was the first time in a great while that I like the brisket that was served me. The brisket was not all slimy and oily and fatty as what I have read lately when ordered the brisket sandwich. That was good to find someplace that's worthwhile drop into the very yet it's not long ways away just a few minutes by the connector.

Dianne indicated she'd be going in to the city to hang out with Bridget and the kids and she would drop me off at Wellness. Wellness is located a kind of busy but the attendant Avery was there. Avery I think is one of the better attendance she is focused and seems genuinely interested in serving the folks working out. There are two attendance that are really good one is Avery and one is Gracie. Alex who is sort of in charge of the whole operation is fairly worthless, in my estimation. Spends a great deal of time talking, flirting, listening to music and talking with the females over in the medical clinic.I was able to get a good workout and be out of there by 2 o'clock. The whole operation, home by three which is just about right. So I plan to work out three times a week Monday Wednesday and Friday and Tuesdays I have Assist, Inc.And on Thursdays this should be very free day which is pretty exciting. This would give me a very good week. Now if I can just not bleed to death before August when I can get seen by Michelle the a colorectal surgeon.

I think we are going to try cutting back on our home health folks. Their services cost us about $1500 a month. So, we are considering, with Carl's help of cutting out three days a week in the mornings, maybe more and then Dianne doing 3 to 4 nights a week primarily the shower nights. I think this would greatly offset the 1500 and allow us to get back some breathing room. I'm still bleeding fairly heavily in the evenings when I do my bowel program. The night care seems concerned about the amount of blood actually of things all that much and I'm really hoping that when I do go to the rectal person that she was say well we just had to get a little bit that you're okay. I'm really hoping this is the case. More to come on that. So there it is first ofthe week Let's do it again tomorrow hopefully.

This Is All For Me :-)

Blog July 11, 2015 – – Saturday

Yesterday I alluded to the fact that I had discontinued my physical therapy regimen, this means that I will no longer be going over to sugarhouse rehabilitation where I have been going the past couple of months for physical therapy well since February when I had my stenosis operation. I have to admit physical therapy has done me a lot of good more so than I would've imagined and I'm trying to wrap my head around the idea of not going to physical therapy at least twice week.

Following a stenosis operation in February my left side or my upper left side was very weak as result of the operation to remove the stenosis. You know it's weird but I didn't realize it was the operation I thought it was because I was laying in bed for a couple weeks before I really started getting back up and living my life. I thought the disuse of my arm had been the reason but no it was actually the operation. So I started sending physical therapy and trying to get back what I lost. Before the operation I had been able to fully dressed myself – – I must admit it was more of a challenge towards the end of spasticity got worse. I could transfer on and off the toilet and in and out of the shower. I was essentially independent. I cooked I washed dishes regularly, I could just about do anything I really wanted to do or need to do. The point of the physical therapy was for me to gain strength and relearn concept/technique and transferring and become as independent as possible.

I've not been to physical therapy in over 48 years which is a long time for me. I came to physical therapy now with a vengeance to get back my independence. I was astounded how difficult this is going to be. But we started first three days a week Monday with you Friday. That did not last long since my insurance only provided 12 visits. At that point time my physical therapist what the bat for me and she enlighten me regarding SB 400, a Utah piece of legislation that provides physical therapy and other medical needs to people who are financially challenged. I am one of those now talk about throwback. I got a bunch of visits true I was no longer going three days a week at the end only two days a week but even that was okay it was more physical therapy attention that I'd gotten for decades. But now that has come to an end at least for now. With the new fiscal year I have to meet my deductibles which is fairly high so I cannot are will not pay $35 a visit that would take to get my 12 visits of physical therapy. Dianne and I have come to the conclusion to limit what medical intervention I needed this point until 1 August when I will begin my life under Medicare. This is a whole other realm of weirdness. Dianne has assured me this will be a good thing in some ways better than what I am already using. I had to cancel my visit with Dr. Daly, my neurosurgeon in late July until August to see if I need more surgical intervention.

So I'm done with physical therapy I have to force myself to make sure that I continue my home therapy workouts i.e. pumping my Saratoga summer and doing the elastic bands these are things I can do these are things I have control of these are things that will help me until I can get a better physical therapy workout. I have to set up that machine I purchased a few months ago which will allow me to do physical things to help my muscles especially ones I use for transfers. So I have a full plate going to have to do it all myself that's okay that's the way it should this is all for me.

Lots of Thoughts

This is the end of a very sad and somewhat stressful week. We buried Gabe's and our next-door neighbors son. Granted all we had to do was attend the funerals and do small chats survivors but still that is a lot of stress. This week I found out also, that because my insurance started over again in July (July 1 begets the new insurance year meaning that I have to paydown the co-pays or whatever). I knew this was going to happen but the application of having to paydown everything again is mind-boggling and stressing when you figure that also includes my physical therapy. So each visit right now in the new insurance year my responsibility would be $35. I know $35 not seem like a lot but it is when having to deal with homecare attendants, catheters and all the other crap that I am buying support disability I just couldn't do it in. Add on top of that that pesky pleader I have in my ass, hemorrhoid that bleeds is beginning to bleed worse and worse. Where this bleeding is not necessarily painful is certainly disconcerting and means some sort of medical intervention which means some out of pocket pay.

As I mentioned my new insurance year started July 1. I've been doing therapy, physical therapy for the past five or six months. I have been fortunate in that I've gone way beyond the 12 visits my PEHP offered thanks to SB 400.SB 400 Is a piece of Utah legislation which helps people who cannot pay for their physical therapy and other things. Essentially free therapy and I was getting it. That stopped July 1 and I will not be eligible until I meet by deductible so when my therapist told me that on Tuesday I quietly, inside my head, freaked out. Really really think I can do is to quit my physical therapy which I did. My therapist had told that I was still making progress in my therapy goals but was getting close to the plateau or for justification to work with me to the insurance/SB 400 funds. I Must confess I have become used to getting physical therapy. Not only has been getting the therapy's been nice but enjoy the interaction with the staff has been sent to. We really begin to get the illusion a family and belonging but nothing like having the dollars run out to sever those ties quickly. So before Kristen to tell me to stop coming I concluded by therapy visits yesterday. Kristen was quick to say that I had not reached the plateau yet but she also understood the financial strain that out-of-pocket pay causes a family like ours. So now I am without physical therapy. I will continue to attend Wellness can take advantage of equipment and professional trainers and even some of the other folks who are at wellness. Now I don't know what will happen next month when supposedly Medicare will kick in and I should have double coverage. I'm going to have to do lots of catch up.

Because of the Medicare opportunity coming up we decided to postpone the visit with daily MD for later this month but found the closest opportunity to see daily now is the end of September. This greatly influenced Dianne who I think sunk into depression for the rest of the day and was kind spooky for me to because I think something else begin to happen with the old stenosis. I'm beginning to bleed profusely from the rectum is just another thing to begin the wear on me another thing I can't really consider until August 1 and Medicare.

For whatever reason I'm having some issues sleeping not going to sleep but waking up when I catheterize during the night just can't get back to sleep.. Some nights are worse than others in Asia make it to the day just fine but I sort of things some of this is indicative of the stress is going on my life right now. But just to be sure I still quite in love with my life and my wife and my family. I think this depression is just situational And passing.

Too Much Death

Can't say it any other way but today was a weird day. We've been going through a series or a plague of death in this neighborhood the past week or so. Our next-door neighbor when they lost her last son earlier in the week, the neighbor down the street drop dead in his yard returning home from work late last week with next-door neighbor, Dan mother died two days before the Fourth of July and my son-in-law lost his father about the same time. This is just too weird. Of all those who died this last week the to that most affect me in my immediate family is my son-in-law's father and my neighbors son. Though we were not, or at least I was not intimately related to the two I was very close with my neighbor, LaNae and of course my son-in-law Gabriel. As it happens both funerals are scheduled for the same day in fact just an hour between each. Actually there is only one funeral per se, LaNae has opted for our viewing and the graveside service. I believe the poor woman just Funeraled out. In the last two years she has lost her husband and her two sons – – I think LaNae just wanted to get the kid planted the whole thing behind her as quick as she could.

Because LaNae's sons viewing was from 10 to 12 and Jack's funeral was 11 o'clock we decided to do a breeze in at the viewing of LaNae's son spend a few minutes with LaNae and family then duck out and head over to the Chapel for Jack's funeral. We went directly over to the Chapel from the funeral home and got there just as they were about to bring casket into the Chapel. It was a little disorienting getting to the church that close to the service. Of course the casket was all gone in the relief Society room with the family getting ready to be marched out to the congregation. But we found seats in the back of the chapel and settled in.

I have to admit it was a pretty good service. The service was unlike any I'd seen done in a LDS chapel.. Very worldly service almost on the profane.. A lot of great stories about Jack – – who seem to be a rowdy guy in his childhood and young adulthood. He's a guy you like to have fun. It sure seems like what history was told have been quite sanitized and rebuffed a little for public consumption. But it was a good service, everyone played nice. A light rain was falling today actually cooling off the day and gave an interesting twist to the funeral. Jack had a qualified military funeral with uniforms and caps from an aging Vietnam vet/hippie or biker. Again like the service it all came off quite nice it looked real good.There is to be some sort of a luncheon back the Ward house/Chapel and we were invited to attend and I was kind looking forward to some good old funeral potatoes but we decided to break ranks head for the Longhorn steakhouse. Lunch was good the company better still, sad much death in my neighborhood it is really sort of scary.

The only Cards I Get– –t Just Play!

It's the day after the Fourth of July obviously, Sunday and overcast day for once. The blaring some is blocked and the temperatures are not nearly as high as a have been a bit of reprieve from the heat we've been suffering from. There I go suffering? I don't think I'm suffering it's hot but I still think I enjoy it even though I have to be careful, I have to cover my head and I need to drinking lots of water.

The holiday was kind of fun actually. I was excited I got up or staff got me out and got my meds then proceeded to make the potato salad for yesterday's dinner. I was excited to have a holiday and somewhat celebrate the holiday. Dianne did some serious barbecuing chicken, steak and bratwursts. I was devastated to find out yesterday that our neighbors actually neighbor Lanae Lost her son a few days ago actually exactly 2 days ago! This is the third family death for her in two years. Her husband in both sons that ago. I finally went out visit with her briefly yesterday afternoon. She seems pretty good spirit wise. Perhaps she's just given up any happiness per se – – however I know this son sometimes wore her out. Maybe she's just learning to roll with the punches, she just been punched so much lately I can't stand see here anymore pain.

It's kind of weird this has been a season of death between Steven death and Jack's death earlier bummed out season so I think there are two funerals will have to attend this coming week. I will still guilty yesterday trying to enjoy the holiday but I did a little bit. Still it was weird. Bridged called later and afternoon and she and gave decided goal to Evanston to watch the huge firework show that Evanston puts on. It's a 2 Hour drive. Of course even if I could've participated like being able to have a vehicle to go over there and I could not because I had to be in bed by 9 o'clock or staff comes in o'clock from the bed. My whole life now is dictated by what I need to have done for me. I'm trying not to let it get me down. I'm still trying to pack everything and to my hours of consciousness for have to go to bed at 8 o'clock.

One last item this morning and have to call Carl and see if he'll still get me up in the mornings as opposed to having staff come in to do so . We are thinking at least three days a week are for if he can do it this would help save a little money that we are intending to put towards home health if and when I have my next surgery. I don't know seems like too little but at least will save some money. I feel like such a wet blanket in the lives of my family and friends. A well it's the only cards that I've got to play

More Then A Bag Of Chips

Yesterday, was a saddle up day. I had my physical therapy appointment over sugarhouse and I also had my time in Wellness Both reasons to out on the tarmac. I took my bottle of frozen water the truly made a difference, I believe throughout the day know if the standpoint of having something to drink but also having enough liquid which is cold the drench my hat in my clothes if need be. This worked in keeping a body temperature down and the day enjoyable and safe. I did a few chores before I took off not wanting to be too long in Sugarhouse with nothing to do. I took off about 930 or a quarter to ten Unfortunately did not have to wait long before catching a bus. I have to admit catching the bus without Starbucks makes a boring wait.

The only real positive today at rehab was that my therapist to a large part agreed with my issues of my power chair. Not that's going to make a big difference one or the other. It was just nice having someone else understand what I was trying to say. She agreed with me the box of my footpads was somewhat overkill. In fact she indicated that what I have is something akin to what a a child with cerebral palsy might have on their chair. She is not seen these kinds has on a scale which I have on my chair. For the time being have grown to accept the front loader appearance of my chair. Now I'm trying to figure out how to latch and unlatch the arms of my chair so I can get close and personal with things I'm trying to do like shave, dishes or whatever need to do. I really need to be more independent or at least feel like a more independent than this chair is actually allowed me to be right now. And, I may have to take off the positioners are what I have to do at least get me to the point where I am using my chair as productively as I can as independently as I can. I cannot overstate the need for independence for me. I think it is everything in our culture/society It is.. I cannot accept these other issues as far as forgoing my independence… Am I just being dorky?

Once again I'm looking down the barrel of a federal holiday/national holiday and in spite of myself and begin to feel excited… I don't know why but I am. I want to get at least one bag of Clover club potato chips, make some potato salad, has something fun to barbecue we may have some stuff already if not get a glorious steak just the barbecue for the Fourth of July. I'd like some corn on the cob too. I think we're trying to do is go back to a safer and more enjoyable time in my life… How pathetic for me?That's okay, I've learned by now that bag of chips does not a holiday make. But it sure helps.

Jumping July

It's early Wednesday morning much earlier than I usually am up because my chairperson had to do something with his significant other early this morning which I don't care as long I am up and out of bed. Today's going to be another hot one and I'm carrying ice with me or icewater to help me get through the day. I threw a bottle of water, a pretty large bottle into the freezer last night and most of is ice this morning. Hopefully the depths of a black backpack the ice will slowly melt Allowing me to keep cool – –I also plan to drench my hat at different points throughout the day hopefully my core temperature down.

Gabe's father finally died last night, the deathwatch of been going on for weeks actually. Cold as it may sound I'm glad the ordeal is over. The stress on the poor family has been really overwhelming. Now the stress of getting rid of the body will cause equal friction. Dianne has been very good to be with the family at their times of need throughout the whole death process over the past couple of months hopefully everyone now Can get back to their lives and enjoy the summer and.

The family stopped at the house last night (Bridget, Gabe and kids) to pick up Dianne to go to Burlington close factory to pick out a new suit for the funeral. Bridget reminded me that we needed to work on building the gate – – to be honest I'm a little intimidated by the whole experience and I hope Bridget will not let me off the hook. We will greatly enjoy time together and building this project I just hope we can pull it off. We may end up seeing if there is anything ready-made at one of the big box building stores. A little worried about trying to do this in his current heat wave but who knows maybe we can pull it off. And as Bridget says we have gave around to pick up the pieces if we should fail.

However today is rehab and a lot to sugarhouse in a few minutes even though I'm hours away from my scheduled appointment. I just want to get out on the tarmac before gets to hot travel and see what I can see them go where I can go in the time I have open to me. I do not think I am running away as much as trying to pack as much time and stuff into the time I have available before I have to go to bed at seven or 8 o'clock. I'm so eager to find out what my therapist and say that rehab when I come in with this monstrosity of the chair. Chances are still circled the wagons cover their own asses which will surprise me any job security is everything but still firmly believe, even though I look good in this chair sitting up straighter than I have for a long time, The trade-off is too great. I've lost too much of my independence to acquiesce the “Cosmetic” upgrades this chair supposedly to render. After all, the chair is a done deal, I have already begin to destroy the thing which is a shame.So off I go for my day on the tarmac the boiling heat of July.

Happy FY New Year's Eve

It's the end of the year, it said like New Year's Eve, New Year's Eve in the middle of summer. Tomorrow begins the new fiscal year everything money changes at 12 o'clock here tonight. Tomorrow I look at becoming deeper and deeper in debt as my insurance puts over to another year. It is been kind of nice sense all the medical trauma of last year has made us meet our insurance levels so everything last month has been covered by insurance 100%. Now starting at midnight we had to start working down the deductible again that really frightens me. July frightens me because of a meeting with my neurosurgeon to see what our next steps are going to be regarding me and my life, my spasticity and thus stenosis in my neck. I would like to think we would do nothing let the stenosis ride but in reality we have to do something our risk much greater neurological injury from the stenosis. I'm terrified of the surgery and what the negative results of the surgery might be. I'm terrified of the financial results of what the surgery might render I mean it's going to cost us a lot, financial burden which we will never get out from under and that depresses me greatly. However life does go on, I hope.

I really never understood New Year's, New Year's Eve or whatever only in the last couple of years as I've aged and realized that more New Year's have passed that I will have coming my way. The financial new year is a different beast it rolls things over and I guess gets things going again but still it is threatening. I continue to have home care attendants come in the morning and evening costing more than 1000 a month which greatly weirds me out. Sometimes I even look forward to their coming but most the time I think I resent them. I don't think we would be able to make it without them there physical intervention helps a great deal. I would like to think I'm doing great – – and I am to some degree but not the point Of being able to shuffle off the attendant care services these folks render.

It's Tuesday usually the day I go in for physical therapy after I attend my Assist, Inc. meeting. I look forward to the meeting and rehab. These obligations get me up and out the house to do some good the world and for myself. But not today. It is doubly hot today, I doubt that would've actually hurt me to be out this heat but still probably good idea stay in out of the direct sun. Tomorrow I will have rehab in the afternoon in the noonday sun and heat but I'm ready for it about water ice up I'll be okay New Year's Day, FY 2016. But I am scared.

Nothing Stays The Same

I should've realized something was going on earlier this spring when a new building project developed on State Street and about 5300 S. Here in Murray Utah. A few days after construction began assign pop-up indicating this be the home of a new Starbucks coffee. I thought it was a bit pretentious to have to Starbucks less than a mile from each other but I didn't for a second think they are going to take away my Starbucks, by my bus stop. Quite frankly, I'm shocked at how much this blatantly capitalistic move has moved me. I mean I am almost as ashamed to go into Starbucks purchase a four dollars cup of coffee as I am to go to Sam's club or other big-box store and see the opulence and quantity of goods for sale. I've only amazed or at seeing the shopping carts stacked high and deep.

I was at my old bus stop last week when I noted for the first time all the Starbucks identification had been removed from the coffee shop.I instantly knew what had happened but I rolled over to the front door anyway where I saw one of the staff coming out. She of course informed me that the Starbucks had closed down and that in a day or so the new Starbucks at 53^rd will open its doors. She seemed genuinely excited at the prospect of working in a brand-new building. Again what are the main reasons I even went to the Starbucks was primarily to get out of the cold but I would catch the bus to work on cold winter mornings. It was a fun place to be 6:30 AM on a cold workday morning. People were nice and he seemed genuinely pleased to see me whenever I would show up – – maybe not as genuineness at the liquor store but there was a comrade in the building. I vowed I would not go to the new Starbucks.

I was out test riding my new power chair Saturday. I jumped the bus gunned down the mall at 5300 S. and State Street. It was during this period that I remember the new Starbucks and indeed it was open so I figured this was not so much about breakage of a vow as it was reconnaissance, gathering Intel. So I wandered through Barnes & Noble, the big electronics store and eventually snuck in the Starbucks. I was kind of hoping to run into something wonderful like a Willy Wonka on caffeine or something out of Harry Potter. What I got was something more like a sterile version of Clockwork Orange .Everything from the drive-through on the north end of the building to the multiple cash registers at checkout to the large windows All around the building everything was designed to make money. Easy access/flow meant more people in and more people out as fast as you can go. Though there are still places a set at far into the building and I'm sure the whole thing is Wi-Fi friendly which is not the old building, the place I liked maybe even loved. The old Starbucks had been a Pizza Hut at the beginning at least 20 some years ago. After Pizza Hut had abandoned the property it was a couple other places I can't remember now until Starbucks took over the building. It's not like the property was dark inside but it was darker than what there is now on 53^rd, the place was cozy felt like a good place to be early in the morning or late at night with a cup coffee. They had nights when they hosted poetry slams, music venues usually some folk guitar strummer Or something else fun. I'm sure it'll try to do this at the new Starbucks but I just can't see it taking off I can't see the new Starbucks being a place where you just want to hang out. I ordered a nice coffee while I was there, I still have money in my gold card. I was shocked and amazed when old guy who looked about my age came and looked around and said he loved the place. I couldn't believe my ears I just turned on my chair and slowly backed away.

Moving On

It truly has been a bit of a roller coaster week for me. Tuesday I had the UTA thing, The panel be on that I did a video for. I should've realized the video would've been enough but I had the silly feeling our notion that they really wanted me, So I had staff come in early Dianne drove into the Grand America and I sat with the panel and said nothing to an audience of less than 12 people.

Tuesday was a busy day no doubt,, Up early, panel discussion then over to rehab for my physical therapy session and once again Kristen was not there. I don't know if I offended her are exactly what but I have been working with a guy named Ryan. He's okay he's fairly good is not Kristen, he is not nearly as good as Kristen . Perhaps it is because he is a guy, a male, a man And what I found is that on the whole it just get by, do they have to and get on with it where as Female therapists I've had been astoundingly good. Anyway I digress. The weekend it with going in for the fitting for my power chair. The power chair which actually arrived three or four weeks ago and which would not be turned loose to me until the formal fitting. This the first time I've really dealt with such a procedure it I have to admit it was much more intense than I wanted to be. I think the whole thing frightened me a great deal Because the chair that I got is much more sophisticated than I'm used to which scares me I think. For the first time in getting all kinds of weird stuff like pads on the sides of my chair position me up in a more upright position stupid foot boxes on my foot pedals which I doubt will last month but supposedly to keep my feet on the foot pedals but I cannot put any put any pressure on them at all. Essentially I've got a chair for quadriplegic and true I am a quadriplegic but I am a fairly active quadriplegic and I don't want to go the other way and become a less active quadriplegic. The speed is okay it's not as fast as I would like that never can see 8 miles an hour again And I'm okay with that. I don't like to read out on the control box is just the icon of a battery which exemplifies how much power I have left doesn't give me a clear picture in numbers I got left power wise. The chair again, is everything I did not want. I wanted to chair just like my old chair that would give me some here to there and let me do the things I've learned to do and wheelchair. However I did get to cushions and that's going to help a lot.

I am kind of waiting to see if I'm going to get a psychiatric consult. I know Sue and the others think I'm wacko. I swear I almost broke down crying at the fitting because this was so out of control so emblematic of my life right now… I have control of it seems. It almost came to a point right there at the University medical Center in the Department of physical therapy I swear I almost had a breakdown.

I've had the chair now for two or three days and am really trying to be positive and open this chair particularly if it is the only option going to have. I really have to get my other chair repaired since I broke the foot pedal standing on it the day that I got my new chair. So I'm going to have to take the chair back to Create see what they can do. I've got a lot to crunch my life is good be different from here on out I can tell. I can no longer be the guy that I was somewhat in between paraplegic quadriplegic that was able to be totally independent. Now I see nothing my life depends moving slower and a lot more careful. This kind of freaks me out but it's where I am and the sooner I accept this sooner I'm going to be able to move on.

Solstice Report

I tried to update the blog last Saturday, the first day of summer, but I'd never got around to finishing the document. Things just came up the way things do the chair irritates when I can't finish a thought. I had a pretty good thought about how I was out the garage trying to arrange enough stuff in my area to where I could actually work on sticks. I spent the major portion of the day, in the hot sun or the baking garage just untangling a 50 foot cord, electric cord, and orange cord used to power things like hedge clippers, electric lawn mowers anything that needs power and a lot of it. The Cord was laying right on the floor In a huge knot. The untangle seem to take forever. Then when I tried to drill a hole into One of my sticks the drillbit is been and I couldn't get the bid to dig deep enough into the wood. By that time I've been on the heat number of hours and I'd had enough. Now, want to go back to the garage and find it drillbit that is straight and will dig deep enough that I can turn a hook into the stick thus transforming another piece of wood into a useful product. Perhaps most importantly making me feel I have had something of a fulfilling experience in doing a little bit of creation.

When I was untangling the corded knot I noticed there was a major injury to the court. Obviously I had run over the cord and frayed wires inside the cord to the point where they would be dangerous if plugged in. If I had the skills it would be an easy fix the snip off the plug snip off the damaged section of cord and reattach the plug. If I had the skills or the hand function neither of which do I have. So, I did some checking online and found a cord which would suffice could run anywhere from 9 to 20 bucks which is doable. I could take the court to electrician or fix-it shop of some sort and it would cost you that much to have the repair made. I could search the neighborhood or contact a family member i.e. Carl and have it do the job if they would or could that sounds too spooky. I mean the cord is great I hate to throw it away but what else can I do?

I am finding reconnecting with my wood shop quite a feat. I don't know why it has to be so hard it really does feel at times the universe is plotting against me and pushing me into another phase of life I do not want to go. I kind of just why my left alone see will happen with the wood project I started so long ago and see where it takes me why should I be denied that? Seriously this may be the last summer my life I should be able to get to make a couple of hooks at least.

Remembering Yesterday

Yesterday, I had a meeting downtown Salt Lake over at the developmental disabilities Council office which as most of you is where I finished my state career. Barbara Toomer a long time advocate and reactionary Salt Lake and I were at the Council office to videotape our comments regarding the impact the American disabilities act has had on Utah and specifically Salt Lake. We were doing this for the local transit authority and what they wanted was pre-ADA post ADA differences essentially a piece patting themselves on the back for the amount of transit the ported people with disabilities over the last 30 years. Initially, the authority me wanted to know if I would do the piece, and they wanted me to do the piece at a panel discussion Tuesday morning American Public Transportation Association( A P Tick select all A) .

APTA is the professional association of transit providers across the country. Whenever started out as a transit coordinator for independent living, these guys were the bad guys. These are the people or agencies we went up against on a regular basis to try to get accessible public transportation i.e. public buses wheelchair folks to get on as well as trains and planes. Adapt( American Disabled for Accessible Transportation) was our program. Adapt took great pleasure in scheduling their meetings at the same time APTA did theirs often closing down the hall meeting by taking over the building the meeting to be held. I was not on the national bandwagon but that part in local events particularly when APTA had their meeting in Salt Lake.

They wanted a panel discussion to be between 8 o'clock and 12 on Tuesday the 23^rd. I was interested in participating on the path my felt they were other folks is qualified if not more than I the on in one of those folks was Barbara Toomer. However I just usually finishing getting dressed at zero 800 when they talk to Barbara for staff does not even come in till 1030 so that would not do. Ergo, the solution is to produce a video that can be played in that time spot. I kind of insisted the transit authority give Barbara chance to be part of this discussion. I believe That no one in Salt Lake County Hasspent more time in Bringing about accessible transportation than Barbara Toomer. Barbara was an advocate exclamation! Barbara did all of her advocacy work out of commitment and belief she was doing the right thing. My knowledge Barbara has never paid one cent for all of her advocacy efforts. I on the other hand was paid to be at these functions, do what I had to do to bring about accessible public transit. I thought of myself as a gunslinger, as a ringer, someone good at bringing change. That's how I saw this piece of history. In the have really good documentation that supports this vision. I probably would have done the same work voluntarily but luckily that was not the case. I did the work, I loved the the work And best of all I got paid for work I loved.

I Had had a rough night previous to the meeting I still felt loose bowel wise but I went to the meeting and hope for the best. I got there early enough spend some time with Frank, a good friend and person who took over my office after I left. We had a good discussion. Frank works in cycles in earlier everyday which allows him to leave on Friday afternoon have an extended weekend. Frank left and I was alone in my old office having waves of nostalgia. The room was quiet an neat nothing like the room I left.

Who Knew?

I know I am going on and on about my attendant care people but they are such a reservoir of things to comment on his experiences just so bizarre I can't help not writing about them. Just be glad I've restrained myself from taking action images of these people – – that probably would be stepping of some kind.

John, my main morning guy whom I've written about before, is on vacation this week yes, these folks actually have vacations too. John flew out Saturday morning to spend a week in Pennsylvania to be with his daughter and grandchildren for the week, So I'm having substitutes for my morning attending. This morning I had Mark he is the same guy that usually does me in the evening. Mark is okay, I guess, just sort of annoys me. There's nothing significant that he does biggest just about the little things. I cannot say I was overjoyed when he told me you'd be doing two of the morning shifts. So that means today he will be doing the morning shift in the evenings which is almost too much Mark. I almost thought about calling the agency to request another person but thought it through and felt what the heck it will not kill me to deal with Mark twice in one day. How bad can it be? After all morning duty is pretty light. All the person really has to do is get me out of bed in my power chair And get me dressed. The process was a little more drawn out when I slinged up in the morning, slinging up is my reference to having to use the lift to move but from my bed to the chair. The last couple weeks I've been working on doing as much of the transfer without the lift and on my own.The process is been a bit more challenging than I had anticipated but it seems to be coming along the best part is it takes a lot less time and tomfoolery. Still not at the point where I could do this totally by myself but hopefully the time is coming. So, once I'm in my chair I'm pretty well done… I know I gave it earlier comment about getting dressed in my chair but actually I usually am dressed before I transferred my chair so when I do the transfer I'm done. Oh, I still shave put on my shirt but actually I can do that on my own. So at the point this morning when I was in my chair and situated okay it was only half an hour and I'm charge for the whole hour. So as I shaved I had Mark fold a pile of clothes. Which Mark did then came back and sat on the side of the tub and watch me finished shaving. I remembered I want to work on but today but there were things in front of my tools that have difficult time getting those moved so why not still have 30 minutes on the clock so we went out and moved some materials around And I found that Mark had an innate skill of order – – greatly surprising me. If you deft movements he found the place for the snowblower and got a space of my workbench to make getting around in the garage much simpler. I was amazed.

I learned some things about Mark he is much more acceptable in the morning when things are fresh and new then eight hours later or even 10 hours later when the day's work on and worn you out. I was used to seeing Mark at the end of his day and at the end of mine. We are both tired and I guess irritable. How much harder must be for Mark to try to present a good face forward since I'm the client and he is the server? But it was very enlightening to see Mark at the beginning of his day. He finally left after being here 45 minutes I really could not think of anything else for him to do. I think I'll feel a lot different towards Mark this evening but shows up disheveled, tired to work last hour of his day.

Summer Project

The hot days are beginning for what the computer weather forecast is saying Will be the begin the onset of at least a week with temperatures either in the high 80s or 90s it's going to be hot that's great for me I like the hot weather. I know, I've gone over that a number of times in the past in this blog. However this summer I want to take much more advantage of my time in retirement, time here at the house and hopefully a rebuild of my fence, more specifically the gate which leads to the back patio.

My goal this summer is to sunbathe nude as I can as much as I can on the patio in the back of the house. After much examination and checking I have found one small piece of territory in my yard which will allow me to sunbathe nude without being seen by neighbors. Space is very limited but gets great afternoon sun and if I have A gate that's closable I should have the privacy I need to keep me out of court. There used to be a gate which closed to the back patio , but 20 years that we've lived here the gate has broken Almost disappeared. Only half the gate remains which needs shoring up and the other side of the gate is gone completely. I've pretty much given up the idea of the gate ever be repaired during my lifetime but this last week my daughter Bridget – – who has been very encouraging of me in my shop project of making sticks – – and indicated an interest in repairing the gate, not her husband Gabriel, but she and I working together rebuilding the gate.

I of course I threw out immediate roadblocks to such a project. I know my skills, I know my abilities and building things wich actually function is not one of them. That is why I pretty much limit myself to sticks or hooks. This I know I can do and do fairly well and not Live under the illusion that I am some kind of a woodworking genius. However, I must admit I was impressed with the amount of work projected this last week and cleaning out a part of the garage and help me fix the sander I dropped earlier this spring and very much bent out of shape. The work took us a good four or five hours but we managed to get the sander operational and we sanded down two sticks ready for turning. This past week I went out and looked at the gate, the portion of the gate that need to be shorn up and the gate we would have to do completely rebuild. We even have most of the materials we need for such project in the back. I think we'll need some technical input on how to remove the bolts in the post that needs the new gate but that should be fairly easy. I know, I should really know better than to even try to do something like this but Bridge has given me faith that perhaps with her tenacity and my limited skills and then as Bridget says, “we can always get Gabe to fix anything we mess up.

POV

My left arm was greatly affected by the recent stenosis, well the stenosis that I had removed last year Or earlier this year. The left side deficit has really limited my ability to be independent effectiveness through physical therapy, great support at home in my own drive I've come back fairly well.. I still have issues with my transfers probably dressing though I haven't had a chance to really explore that area. But the last couple weeks I have sensed that my left side is becoming weaker again. As much as I do not want to acknowledge this fact in the back of my mind I think it is actually happening, but stenosis which was left on the other side of the spinal column is beginning to exert pressure on the spinal column causing my left side we can which could eradicate any gains that I've been able to bring about. I have brought this up to Kristin my physical therapist who in turn has brought this up to my neurosurgeon about possible intervention to remove this current stenosis – –which scares me to death but not so much as losing any more function on my left side. What really frightens me is losing mobility on my right side go to you go to be in the lin which might be secondary to medical intervention for the stenosis. The neurosurgeon really does not want to do anything and tell a certain period of time which of course will be passed this insurance year and into the next meeting will cost us a great deal more to have the same operation done then instead of now, now being the end of June.

I of outlined a little of my life after the recent operation and how it's changed and how costly it is become with attendant care. How I have to go to bed every night starting at 8 o'clock because that's when my attendant arrives to do my bowel program and put me to bed. I could be upset about how much this takes away from my day in particular my evening. I miss this most of the summer when I would work out in my garage on making sticks until eight or 9 o'clock tonight, listening to NPR and just working on my wood. Yesterday, Bridget and the kids were over, we worked on my wood shop out in the garage. Bridget did a great deal of work which I greatly appreciate particularly fixing up a piece of equipment I dropped it really bent out of shape. We ended up making just two sticks that's okay we got the garage set up to where I can go out to the garage now and work As long as headlight during the day when I have the time. I still have to start getting ready for bed around 7 o'clock but you know what? I need to see and be thankful the fact that I can work out there for a good amount time and that is what is important. Same way with everything else is what I can do with what I have left which is important. I can let the fact that I miss a couple hours of the day not be able to work on the fact that I have a bunch of hours that I can and I must take advantage of those hours that I can be productive, have fun, go places, meet and be with people and enjoy my life. Is this not what it is all about? Now more than ever I have to make every second count while I'm up and can do stuff. I'm excited to have my new chair coming when it does come with this giving more independence with celebrity stretch out my day and do more things with the quality chair that is functional, batteries? I've been thinking with the fact that I go to bed or get off my butt every day at seven in evening maybe this has cut down on my body trauma and actually allowed me to enjoy the quality of life that I may not have because I was doing too much. So everything is point of view, how I look at My life, half-full or half-empty and all the other little word tricks that help us get through Our lives.

Ask Me If I Care

I apologize again to seem to be so focused on my experiences with home health, attendant care but the whole concept Continues to fascinate me beyond report. Couple weeks ago John, my main morning guy, who informed me that he was going to return to his home state of Pennsylvania to watch his grandchildren while their mother went on a trip to Cancun. He indicated be gone for a week this was just a heads up I mean really what do I care? It's not like I really have these guys employed even though it really is supposed to act as a manager for them – – the employee to an agency of the don't show up they call somebody else on their list to do the job assuring the consumer, me, a seamless fabric of support so do I really care if you're going on vacation, have jury duty are whatever? You, the home health aide, is just a cog in a giant wheel Of the American medical complex. Again I care little bit about who shows up to get me to bed or to get me up but I really don't have that much control over the whole thing. Last night, Mark the night guy, informed me that he will be doing John's coverage next week Monday and Friday. I really wasn't that turned on to hear that information. Barely deal with Mark on the four nights a week he is my night attended. I don't know what it is he just seems to struggle so much just to do this job. Actually, I kind of admire the guy he's doing three different jobs – – home health aide, aide at a nursing care facility and he drives casino buses Friday Saturday Sunday! I'm just blown away the poor guy have the work that kind of hours doing that that kind of stuff. I guess one time he was also a cabbie on the horse cabs downtown until they were shut down by the city fathers. I always thought about calling the agency requesting somebody else for Monday and Friday Evening with that would probably devastate the guy. I'm sure it throughout a way to make the money up but I think he really likes to come over to provide my assistance. Again, is really true to myself but I fell about him really matter, theoretically it is are the best quality care that I can get. And mind you this is the only guy who has had the balls to charge me more than a hour and contracted for because we went late. Not saying you should not just saying come on , Your gouging me anyway Just charge you for the hour don't worry about the few extra minutes we went over time.

Bottom-line, I don't like him nearly as much to ask me, in fact the kind of scares me, I really don't Want I have to associate with him anymore than I have to… And then the other day he informed me like I should really care that sometime this winter is taking a week off to do something Southern California with his grandchildren… November?! Why do I care? The agency would just send somebody else anyway somebody that I might like, someone who will be here on time someone I will really miss when the weeks up… Home healthcare what a drag.

A New Set Of Wheels

Just got a call from my wheelchair vendor okay wheelchair salesman because that's all they are wheelchair salesman. He called to tell me I chair shipped today, which means the factory is done making it and they basically dropped it in the mailbox and if I'm lucky I'll be here by Friday if not then next week, Either way it doesn't matter a whole hell of a lot because I cannot take ownership of my new power chair to my physical therapist fits it to me. So the next step I was told to do is contact the secretary for my physical therapist set up appointment at your earliest open date, which of course is until June 23 at 9 o'clock in the morning. So Christmas gets Shoved a little further down on the calendar.

Don't get me wrong, I love my physical therapist, Sue. She's great in his help me a lot in the end she is an appendage of the medical model and what she says goes regardless of what I think or say. For those who remember reference the manual chair hell. The chair I raised such a stink about, how it hardly fits me and how I can't really use the chair in my life. The chair which takes up valuable room or space in my house. The chair which is with that much more than I wanted which I can't do anything with the piece of junk even give it back to the vendor. I wonder if it's because I raise such a stink that everybody, especially the sleazy salesperson just cover their ass from the top to the bottom from the customer from hell – – which is I am sure what I am known by the local durable medical/medical professionals.

The sales guy, Jason is your run-of-the-mill , plaid coated, Say anything to make a sale, durable medical vendor.I Have had better sales guys in the past, One or two I have actually believed in, one guy would actually show up hours after closing if needed -- corny in the as it may sound—To take care of his customer. There shop was forced to close, I assume because they were not making enough money or some political thing with one other major vendors with the state. So now I'm dealing with this Out fit and having to wait till June 23.

I think I am taken it pretty good all things considered, I've resigned myself to the concept to believe in something when you can see it, feel it, taste it. Yes I know I am very cynical but my life in a wheelchair and actually before that has really grounded in a the world of cynicism. I am so thankful to have this backup chair. If I did not have this chair I'm sure be a lot more pissed than I am right now. I'm sure I'm going to be disappointed when the chair arrives finally and I have to drag my sorry ass up to University of Utah and meet with the “professionals in my life”And have the chair “fitted” to me like this is accepted formality but really it's there happen before.But sigh, you do what you got to do to get your ass in a new set of wheels

Paradise Lost

Thursday I was on my way home from physical therapy and Wellness doing my long wait at Murray Central– – This is what UTA calls their transfer point at 5300 S. in Salt Lake County. Murray Central is where I connect with route 201 and travel southbound on State and gets me a couple blocks from the house. During the day route 201 runs one hour headways, you got it, that means that bus runs once an hour. Invariably it seems I have to wait at least 30 minutes if not 45 which can seem a long time in the dead of winter or the heat of summer. In either case I have to wait and many times with other folks. Many times Murray Central is not a very happy stop. People are hungry, tired, cold/hot unhappy for any reason that people who ride buses generally are. I'm usually tired by the time I get to Murray Central and want to have as little contact with human beings as possible. I know this sounds pretty callous but that is how I feel at this time of day which is okay because usually everyone else feels the same.

This Thursday however there was a mother daughter team sitting on the curb waiting for the bus. I think, I know, the daughter was developmentally disabled and sort of had a suspicion that mom was too from their conversation. They were also trying to engage other transit patrons into conversations. Sort of like Forrest Gump takes the 201×2. Luckily for me I must've been too intimidating since they never got around to asking my name or how come I had to use a wheelchair. However, I did listen to their conversation was a little bit intrigued. They were trying to get to a credit union one that I was not familiar with. They never said what they wanted to do at the credit union but I suspect it had something to do with either cashing a check or checking something about their account. They did not seem to know where the credit union was just that through 201 should get them to Credit union or close. Was kind of hoping one of the other travelers would pick up and helped them out but that didn't seem to be happening. Just for the fun of it I took the credit union's name and read through the search engine on my cell phone sure enough the credit union did exist but I couldn't see one very close to any of the stops on State Street in 201. There happened to be the credit union by that name in the Murray area not far from our bus stop but quite a ways if you're on foot, there actually looking for specific credit union further south and the only one I found one in that area was way out of their way in no way would Walker's be able to make By the time the credit union would close. I should of got involved, I should've helped them with directions, maybe let them use my phone to make a call make sure where they were going. I didn't I was too tired. I did not do what Jesus would do our would've done. I talk a big talk about helping wanting to be involved doing good but I don't take a golden opportunity when it's laid before me I'm such a joke.

Me or for Him?

Earlier this week at wellness, I met Andrew. Actually, it seemed Andrew a number of times at the rehab facility a couple times and even spoken briefly with him but nothing of any substance just saying “hi or goodbye” as I went to the elevator. I noticed the feeling the first time I encountered Andrew it was a drawing towards him. And as a young man just out of high school getting ready to transition to University. For those guys had everything going for him, talent, brains, good luck and a will to do anything you wanted to and somewhere along the way he got his neck broken. Now a lot of this I'm going to surmise because I hardly know the guy except to look at him but I think that's going to change to some degree.

I broke my neck just about 49 years ago exactly, next month will be 49 years. At that point in time there were not a whole lot full of their with quadriplegia at least from spinal cord injury. Those that were out there survived pretty much by luck, dumb luck. Like me for example I was hit by a car just outside of fire station in the middle of July. All the fire guys were outside in the shade just sitting there during the summer day. I was an intersection I just stopped at a stop sign and went to cross the street but has hit by a car. Flag I saw the whole thing they ran over and held my neck in place in my head together until the ambulance came and took me St. Luke's Hospital. Jump ahead four months and I was transition to rehabilitation. There like three or four other guys under 30 at the rehab when I entered and only one was another teenager: Steve Andrews. We had nothing, and basically avoided each other while we were in rehab. Once I got out of rehab I was an odd duck. Admit one other person close to my own age in rehab and we sort of hung out off and on over the next couple years. I hardly ever saw anybody else wheelchair unless it wasn't rehab very few of those people my own age. I had no one to talk to good been through the whole spinal cord injury thing just because there weren't that many that survived. I don't know how much difference it would make have somebody who knew the ropes. I think any input would have been helpful. Oh of course the docs and social workers had a little bit to say but who would believe them I don't think I did what they did say scared is not out of me. Over the years I've had contact with many spinal cord injured folk and I was the peer counselor. I was the person who'd been around the block may cases this is my job I was paid to be the point man let these folks know exactly how is going to be. I think I helped more than I hindered it is been good all along. I've always been somewhat self-absorbed thinking that I was there for them, I was the expert I was a know it all.

When Andrew came in the other day there was a woman with him that eventually found out was his mother, Andrew enough to this therapy and I spoke with mom. I found out that Andrew was from Washington state and that he was planning on entering the dominant religious-based University in this state, Brigham Young University. She was amazed that I had kicked around as long as I had with my spinal cord injury. She was intrigued that my level of injury was close to that of Andrew's. We talked about his situation and her concerns. They were living with her in-laws and Murray Utah not far from me. Her big concern was letting Andrew transition to University this coming fall. She knew would be the best thing for him particularly concern his independence. Kind of throwing them into the deep end and see if he sinks or swims. She seemed like she is ready to do this and this is good. Andrew can get on with his life as a person with a disability and she can get on with her life as a mom of a kid with a disability. As we had our conversation I was thrown back in time and just wondered how hard it been for my parents to let me go and continue to be a person living my life, doing what I had to do to grow and mature as a person with a disability.

I was called to begin my therapy session making a note to send Andrew an email and emphasize the points with spoken of regarding options he could consider while in Provo at the University. I wondered again as I left the mom it was good that she ran into me or I wonderedmaybe it was good for me to friend her .okayand Andrew. I have been thinking of this a lot in the last couple days jus wandered how many of these experiences have been directed at me

A Great Way To Start June

This month is just getting away from me I cannot believe it's the fourth and I just have not written a word. I have a myriad of excuses I always do but that's not acceptable.June is been hard to start up for some reason. I am pleased however I did get my missionaries letter out I'm still working on the grand kids low and that seems to be a bit challenging. I usually try to write these things the first Sunday of the month so it gives me a focus on the Sabbath list for that day that Sunday. So I tell myself I will write the grandkids on that day. The end of May beginning of June is slug of birthdays I must attend to , Michelle, Mark A and Bridget all fall than that first week of June and May. It's not a big deal I just have a hard time getting them all out again excuses.

Yesterday, in the midafternoon Dianne was getting ready to head out spend some time with the kids and I was exhausted I did sleep well the night before and I was cruising around in a daze just surviving the day he all of a sudden I got the telltale signs of a loosed dump, coming quick and with great prejudice. I'd had John dressed me in my khaki shorts, I love the shorts and I will miss them. I was hoping they would be quick for me to to get off praying that I had time but I was more afraid that I was not going to have time to get them off in time. Mind you, I'm in my power chair But I could see that I would be able to get the chair close enough to the commode to make the transfer. So I began laboring on my shorts. I could feel the bowel movement coming I had my shorts partially removed and I said I'd better make the transfer from the pile is going go right into my new cushion of my chair. I heaved and made the transfer was sitting on probably a third of my shorts just could not get them removed but I kept working. The flow began luckily I think Two thirds of my anus was free and I put them major load into my shorts but most of the evacuation I got into the commode . Dianne was in the mists of getting ready for her adventure but she stopped long enough to assist me and clean me up and give me the bed where I stayed remainder of the day. I had to put a brief on just in case I had more coming down the chutes that did not happen. I spent the day watching GR I MM, the series, which I have been working on this last week and that was kind of fun.

The event of the day could've been a great deal worse. I actually had Dianne through the shorts with the poop inside away. The cleanup was minimal I had been willing to call in someone to clean me up Dianne did a great job, she's a real trooper. I'm 64 I don't know how long I can keep doing these kind of things you know save myself from major messes. It really is kind of scary. However am thankful I was able to do what I do to mitigate the issue. Just wonder how many more issues are out there.

LIKE THE FEEL

I just got back from a cruise around the neighborhood in my new chair and I know this is no big deal but it kind of is. As you know I got the chair couple days ago Dianne dropped me off at Sugarhouse rehab and then I was on my own from there. It was a good day and I was pleased when I got home to see the chair had only used about10% of the charge and thought this was extraordinary. I had Mark plug the chair as always and went to sleep, next day I was sitting at 88% charge and looked like the charger had been unplugged. I was frustrated but decided go with it and see what happens. At the end of that day the charger was at 78% . This time I did plug it in and made sure was plugged in right, everything looked okay it seem to be charging orange lights flashing I went sleep. The next morning, I was vexed to see the charging indicator still registering 78%. I Texted Tom atUCAT , Tom said to bring the chair in which I did. Dianne had a doctors appointment on Redwood Road and drop me off and I bus the rest of the way.

It was a long day at Create. I've not known Tom very long, I understand he is down from Utah State but he really has not impressed me too much at this point. However I sat there with him as he worked out the problem of the chair… Hopefully he did. He went through a couple of his own remedies of which didn't work eventually contacted pride technical support, I don't know if it was a man thing of having to ask for help or what but certainly made the operation go quicker once that was done. I'm just glad we found anybody Pride on the Friday afternoon . We pulled out the batteries reconnected them and basically rebooted the motherboard of the computer on the chair and eventually had to reprogram the whole thing but all worked and I was out there by 3 o'clock doing the long road home.

So, last night I had Leticia plug the chair in right this time I went through the whole process and looked like it was charging and you know what? It was' this morning the meter read 100%. I really wanted puts more time on the chair so, I quickly pulled close, wash dishes swept the floor in the kitchen and took off. Dianne has been having a hard time with her shingles and diarrhea. The filter is probably best letter sleep and get out of the house and not bug her. I cruised up the neighborhood stopped in the garage sale and spent time talking to Swede the old guy, World War II vet and we talked good and like old guys. The sun shone fiercely may even have got a sunburn But it feels good. From there I went up to State Street over to Big five, then Toys “R” Us. Must feeling flaky so I bought a couple candy bars one for me or for Dianne. I came home, straight home. The chair had like a champ I'm sitting at 95% charge after going 1.9 miles of travel pretty good have to admit I'm a bit impressed. Tried to call Mark A, and Ross but to no avail maybe later. It feels like a summer Saturday. I like the feel.