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.