Hello Frustration My Old Friend

I have recently entered into a number of fronts of dealing with service providers and I becoming totally frustrated with my catheter provider which is Edgepark Medical. I've been working with Edgepark for a couple years now they been excellent to work with. We made order said okay subscription and every month I would get a load of catheters just like clockwork. We are not sure what is happened except a lot of this issue has been at the same time I started Medicare. I sure hope it's not Medicare and all their rules and regulations but I have a suspicion that this might be the case. I also started new urologist and internist and I think this is also caused some major issues of confusion. So now it's just phone call after phone call to the same people who say they have done at least be done and the folks that control the spigot of what I mean refuse to turn it on. Dianne has counseled me to be patient and go slow and stay friendly which becomes difficult times – – I am running out of Catheters. I need to have a new order shipped.

I'm also waging a great battle of patients with my durable medical provider, again who I just changed in the last couple months, add to this the labyrinth Of Medicare and the confusion just increases the Waits take longer still. We been trying to get my new/old power chair repaired. This is included one physical therapist, one occupational therapist and a new durable medical salesperson. At one point it seemed good progress was being made then, it seems to me, my insurance ran out so that all the “good progress”. So now I'm trying to make contact with all the sources get some closure on whether or not I can get my chair repaired and how soon. Luckily I have been able to get by with what is left of my front end. Now, it's almost like I do not want to rock the boat for fear of how much longer I might need to wait and if Must wait will I have access to my power chair during that wait? I suppose I could get along in my manual chair which is pretty intimidating to think about. Going to my manual chair could not heard as I struggle to reach 98 kg of weight.

So far for me retirement has been inpatient stays, major surgical intervention and an ongoing struggle to make sure my benefits stay intact and that I am able to use those benefits. What is zoo! I'm going to have to go back to self advocacy 101 and make my representative at Medicare be my new best friend and make sure he/she is always thinking of me. I saw so far beyond that at this point my life to find out that once again I am at the beginning… Perhaps that's the way it should be.

Take Me Back

My brother and I at bath-time.

What is it with images more specifically photographs that can take you back to the moment that images taken. Sort of like the sense of smell you know like sometimes when you're prepared and all of a sudden you run into a fragrance that immediately teleports you to a timely have not been decades. Sometimes wet cement catapult me back to my house on Latah Street invoice you in the mid-50s. I would be down in the basement of my dad finish out the basement and our bedroom downstairs. He had to mix the cement and then poured on the floor later finish out the wall plaster. Although smells are triggered when I scored a poor water on cement and I smelled a result. Images do the same sometime. I see a look on my face and I know exactly what I was thinking that images take.

Back in July on the anniversary of my accident Dianne posted an image of me taken of me and they are transporting me right off the street into the ambulance. Ended up in the newspaper was quite graphic. Anyway, people have been interested in images of my youth since then. A couple years ago I was even doing “Flash back Friday” and I went uploaded image of my youth. It was quite favorably received by I got bored and only kept it going for a couple of months. However, I have once again been prompted to load images from my photo albums onto the hard drive. I don't know how wise that is sense hard drives can corrupt and mine usually do at some point. In fact my laptop is going through something currently which has me a little worried that since I have all kinds of capabilities i.e. the cloud and other backup scenarios I'm not too concerned. The major problem is having to go through my stock of images most of which are still anchored to pages in albums and afterwards the images turning to free radicals. It becomes an overwhelming challenge. Still, I think it's important and not to be too redundant of last week's posting about images of just say I am sneaking up on the project again.

What I'd like to do is develop a line of greeting cards made with images I have come across. A lot of them are kind of cute and would make great greeting cards if nothing more than just for family members. Because start off with five or 10 and see where I go to from their.

Every Picture Tells I Story

The other night I had a dream About all the images I have in my picture box. The picture box is a receptacle of all the images of my history before the rise of digital cameras. The dream woke me up really got me thinking. My mom is the one who put together what picture albums I have. And I'm totally indebted to her for this monumental work – – monumental not because she put together such a focused image album for me but she did this for all the kids in the family. There 10 of us in near as I can tell she's done the same for all. This is not one album I have two or three some in different states of disrepair and some that I've dismantled on purpose in order to retrieve images to scan onto the hard drive that I could use for posting and other bits of writing that I do. It's even more incredible is that on many of the images or pictures she is actually handwritten comments that describe the event. Some are somewhat silly but others I think are extremely valuable to try to cobble together a narrative of our family.

As I lay in bed trying to chase down just a little more sleep I kept thinking, there are a lot of images that are specific just to me. What is in the other kids albums? I would really be interested in seeing what's in their albums. There's gotta be a host of images I've never seen that's from the older kids early life before mom and dad married. The same is true with my younger brothers and sisters I wonder what images were taken them in their different school, church, athletic activities that I've never seen. I put together all kinds of thought projects that would establish a family center for all the images would be kept preferably online to where these images could be checked out, copied and used to their full potential's for whatever family members might want to do that.

Of course in the light of day dreams fade and perhaps that's best. There are a lot of undertones in my family's history – – mythology. However, I'm still fascinated when I come across images I've never seen before. As I looked in this last album that I got for my mother before she died, she had done a monumental not work together images of my dad and his family as well as her family and many of the kids especially older ones had never seen before. I wish I'd been able to access the trove of images that my mother worked from or at least the negatives before they're thrown away. That's truly what happened to all those images were tossed.

Rod Stewart sings “Every Picture Tells I Story” that's so true and what's also true is the story that area picture doesn't tell…

Lunch With My Buddy Frank

It's hard to believe that I've been separated from work for about two years now maybe a little bit longer. But I still feel close to the folks I work with at the DD Council. Actually are sort of felt close and I still sort of feel close to a lot of the folks I'd worked with in my career. Not that I think they feel as close as I do but I still like think of them as friends. Back in June 2008 I wrote a post about the new guy at work Frank. Frank was in the office next to mine and he was a guy or is a guy. This is important since I was the only guy at the office for a long time to have an Frank there was great support. We actually became quite close over the time I worked at the office. Frank is significantly older than I sort of looked towards him as a role model. Frank had been a Fedally(I'm taking on guess at that spelling). Frank's a solid guy plus he's got good hair and remember several days even better than I.

I like Frank. And I've kept contact with Frank over the years since I've separated or retired from the office. I also do with the other staff Frank and I sort of just go together. He is wailed to be working actually. He should be retired and joined his life but things haven't gone the way that they would should of for the guy and so is working is working okay taking care of the people at the same time. But he is getting older than his age is beginning to show itself has to take it easy a little bit. I try to get together with Frank as often as I can or go to and as often as I dare. I don't want to wear out the friendship. They usually stop by the office perhaps once a quarter after one of my meetings downtown we wander over to the mall and grab something to eat and then just talk. I should insert that Frank gets to the office early and I always used to get to the office early so we always had 45 minutes to an hour to speak before work or other staff got to the office. We got to know each other pretty good. Frank is a good direction. He's well-versed in money matters where I am not. Gets me to think about things I need to think about and encourages me to be better than I am. He seems to care for me and I appreciate that. I wish him well. But he like the rest of the staff and some of my other friends, who were older than I, are really begin to experience the effects of old age. I wish that were not the case but it is. Our old boss has some sort of her thing going on and she's getting to the point where she's a bit touch and go – – doing less than having to probably make some decisions in the near future regarding her employment. She's real close to my age.

Going back to the office in many ways feels like going home sometimes. Whether it's wise I don't know but many times the people at my office that felt like family and you always hate to see family go. But until then I'm going to continue having lunch with Frank even if he doesn't pick up the tab – – but he usually does. Frank has style much more style than I do. So hang in there Frank you the best meal ticket I've got.

Gift Card Dilemma

One of the constants that I rely on is that one of my kids will give me a gift card to Amazon whatever the holiday might be. Christmas, birthday, Father's Day whatever holiday I can look forward to a gift card. This Father's Day was no exception Mark A came through with a gift card. 20 bucks! Not a windfall but enough to have a couple books are memory card or something. It usually comes as an electronic card and that's cool. I just hold on to it when I need is there. This year about the same time I was notified by Amazon that I had received eight or nine dollars as being part of a class-action lawsuit against Apple Inc. and their conspiracy trial. Amazon just informed me that the dollars have been put into my account which I can spend any time I wished. In the meantime of course I inadvertently deleted marks email with the gift card and more importantly the gift card number. Things are busy of course that the big couple weeks to get together the point of calling Mark and asking him to resend the card which he did. So I had $20 on the gift card plus the money I had on the refund from Apple that came to about $33. Inadvertently again I just added one card to the other gift card and in the meantime somehow lost the numbers or the numbers wouldn't work. This was a frustration I tried to download a number of books but I just couldn't get Amazon to recognize my credits. Finally I figured I just better get to the bottom of the whole thing called customer support. This is where I realized Amazon does not make it easy to find their customer support number it literally took me days and emails but finally I got a number and I called. Of course I got a hold of some third world call room and an operator who had fairly good English skills but still it was a challenge conveying to that person but my needs were. In fact at one point I lost contact with the individual entirely and I thought he'd hung up and this is after about 30 minutes of conversation. I really just figured it had enough and broke the connection. I can't say that I was angry or even frustrated figuring this was par for the course and I would have to deal with this again on another day. Imagine my surprise when my phone rang and I saw that it was a call from Washington state and I grabbed the call and it was the operator who actually called me back! I couldn't believe it. I was so impressed I was beside myself so we continued the call and basically he was passing me off to somebody a Kindle phone central. But he cared enough to call back to call me at my home I did not know he had my number.

The operator Kindle was also great and prematurely for the most part. He at least figured out how I could access my balance to use on further Kindle or Amazon purchases this was great. He also assisted me with the purchase of the volume I was interested in. The only problem was she did not download the volume directly to my tablet but placed it in the online library of mine which I figured I could go back and access and download the volume to where I wanted but that is not been the case. I cannot find my on line library. Which I am frightened the mean another call to Kindle to have them talk me through or maybe just drop down to Best Buy and ask one of their techs to help me find my book. It shouldn't be this hard but I'm just happy to have I am just happy to have 30 more dollars to spend and a way to spend it.

A Dirty Rotten Shame

I miss sleeping outside. I miss sleeping outside during the summer. I used to love digging out the old sleeping bag and strapping it to the back of my JC Higgins bicycle, one speed, and then pumping over to the best friends place in sleeping out under the giant willow tree of his grandparents. They were one of those families, originally from the South, where the extended family all live together – – not the same house but on the same property. I thought that was so cool that they had their grandparents living right next door and they were just part of the family. Anyway, this was all situated on a small farm. It was fairly rural area but the city or urban creep is fastly taking over that part of the town. We live to further south and our farm was a little more rural than John Tom's.

We would go over to their house after our chores were done: the cows watered,Cows milked and equipment washed in milk put away. Then we were free. You watch TV at that place – – they had the only color TV I had ever seen and I was totally amazed. We would go back to the camp when the news that start around 10 o'clock in bed down for the night at least that's what we told their parents. July and August of course were hot not only the days but the nights as well. Afterward given sufficient time to have the parents believe that we were sleeping we would get up and walk out on the road in front of their house. The road was asphalt in the tar would be spongy from the heat of the day. If you stood in one place you would actually sink a little bit into the asphalt. On the newer asphalt further up from the house we would lay down on the street and feel the warmth of the day this was great. We often wandered a couple hours then it was back to the campsite Where we would turn in for the night. At the crack of dawn we were up and on lucky days we are allowed to make a fire. And Mrs. C would provide us with bacon and eggs in a cooked our own breakfast it was great. On alternate weekends we would have the same adventure but on our farm. We had a standard live in trees on the far end of our property very often pitched our camp. It was fun but nothing is elegant as camping at the Cantrell's.

As I roll back and forth to the bus or the train to pass all these homes that would have wonderful places to spend the night, or have asleep out. I don't think kids can do that anymore at least like we used to. I don't see kids pack and sleeping bags back and forth in the evenings going to a friends house to spend the night. That's shame a dirty rotten shame

Busy Busy

Not that It's been a busy week, really just two days that I had to be out on the tarmac but it feels like it's been a busy week as I close in on Friday. Yesterday I had to do some power chair rehab. Don't know why but my front casters Have gotten quite chewed up recently and I figured I'd better get them changed out before they completely disintegrated. I had hoped that my physical therapist and occupational therapist would have put the pressure on my DME to fet the repairs done on my chair which included new casters but of course that did not happen.

It set the appointment for 10 o'clock which I know is early but I figured I could get up early enough to figure out the bus situation gets there in time for my appointment. I was pleased at how well my transit went. Unlike day before yesterday which I took the long way around this time I took the train up to four S. then migrated over to the bus stop which took me straight into Cheyenne about a block and a half for where I need to go. So I got there with about 45 minutes to spare.

CREATE is one of those weird quasi-state institutions. It's a program which was developed out of a think tank in northern Utah at Utah State University. The attached the program to a state facility: Vocational Rehabilitation. I use them as much like can. When is working with the State I got a lot more perks that I get now but I had a closer friend running the program. So let's call them still do the deal. The program is not ran by a guy named Tom. Tom is okay just a little anxious to get his program off the ground. He's actually done a good job with the program that he inherited. You really want to talk to me about my old program Access Utah Network. He really wanted to know about the program and if some format of that project could get started again with a focus Toward assistive technology are A T. It would be a very complicated project and he is thinking it might be able to be accomplished with part-time staff and or volunteer. I was a little bit disenchanted I was hoping for more involvement. I suppose I could volunteer to volunteer, boy that would be working to close to the enemy. But again something needs to be done there really needs to be some sort of information base that people can call: consumers, professionals and medical professionals. Because right now everyone is just out there twisting in the wind.

On the phone Tom quoted me $30 for the job to be done. I was really hoping that with all the talking Tom did and then all the information I gave that he would give me some server break on the Castor replacement but that was not to be. In fact was 30 bucks ended up being 60. And then he invoiced me because they don't do credit cards. Totally amazing. So it turned out that he replaced all four casters at $15 a piece and I suppose that's a deal. Hopefully, if the repairs on the chair ever do get approved I'll go ahead and get new casters and put these on back shelf for backup. Like I said even though I'm it does not look like I've done a lot it feels like it's been a busy week.

Genuine

I have a board meeting every week at Assist Inc. I know I've talked about this group many times over the years. But it's a good thing that I do even though it's a bit lightweight gets me out, gets On public transit gets me downtown it's a win-win for everyone.

My meetings at 11 o'clock which means that I need to focus on getting ready and out the door really as quick as I can. Oh, it's really not that desperate but I like to have some breathing room. Fire leaves the house about 9:30 AM I can get to the train station by 10 o'clock and sometimes even earlier than that. That really only gives me an hour before my meeting. Today for example I think I left around 8:30 AM.I got down town about 930 because the used book person at the library had not yet opened up. So To kill Some time I went over to Dunkin' Donuts and got some coffee And two doughnut holes. I'm kind of fascinated with all the marginal downtown people. Especially around the library, the Salt Lake public library. I would not say the library is huge But the library is big enough. It's got water, restrooms, and a hell of a air-conditioning system plus electric outlets and of course computers hooked to the Internet. It is a homeless/hobo magnet. So course not so much at the library itself but on the corners across the street from the library are great places for panhandlers to situate themselves. The images have at the top of the page is this guy I've watched for a couple months now that I've been getting back into some of my volunteering. He's got the place in front of Dunkin' Donuts staked out. Anyone getting off the train and coming to Dunkin' Donuts has to pass this guy. He looks okay, he's fairly clean got some teeth issues I guess they call it picket fence teeth were lots of teeth are gone but he still has a great smile. Every time I pass him going in our coming out of the coffee shop he calls me box. I don't know why but this just tickles the hell out of me. This morning I watched them for about an hour. He doesn't really approach you and ask you directly for money. Just ask how you doing and I think he's genuine at least I feel he is genuine when he asks me how I am feeling. I feel it's kind of interesting that people who just brushed past him when they come in and sit and have their coffee and watch him often stop on the way out and give him some money. This morning I saw people by him breakfast sandwich and coffee. I went out on the street and took a couple pictures of him. I don't know if he noticed, I don't think so. I engaged him in a brief conversation when I told him he lucked out and got a great sandwich. He beamed and said “yeah it is great you want a bite?”. I chuckled and quickly said no no that's okay but thanks. And I could tell he was 100% genuine. I gave him a dollar. Not so much because he was panhandling the because I took his image. I should've paid him more but I am cheap. Maybe next week I will.

Possibilities

I've spoken before about the CREATE program, the Utah reutilization project which I was part of at the creation. Well the program has pretty much sustained itself all things considered and I like to use them as much as I can not only from the support standpoint but from the fact it's just a great deal. These guys sell me used equipment that really is just as good as new at much lower fraction of what the cost would be if I do go through a regular DME provider.The only drawback to using these guys is that there really way the heck out on the west side, maybe not so much out just sort of hard to get to. I c,an do it but it's number of bus transfers and I guess what else might do with my time. Anyway, my chair continues to debilitate around is probably not the right way to say that but still it's falling apart. In defense of the chair, I must say, It is done pretty well considering who I am. Now supposedly the fixes are coming but either my new sales guy is dragging its feet are my insurance Medicare is having a hard time either way my equipment is falling apart. Right now real problems are of my front casters, and my back casters to but the front ones are much worse shape. I don't know what I've done but major hunks and chunks are missing from the front tires and I'm afraid if I write on each wheel/casters but longer the whole device is good shred apart and disintegrate leaving me stranded. So following the great advice of my wonderful wife Dianne I made an appointment with Tom who is the Manager over there at CREATE.. It took a little finagling but we finally settled on a date this coming Wednesday.

In the course of the conversation I was a bit surprised and Tom asked me if he could speak with me a little bit about developing call support program similar to what I managed for the State called Access Utah Network. Tom said you'd be interested in establishing a similar program out of his office. I really don't know what he has in mind I don't know if he's really talking about a real program like I ran. But his correctives feelings that they should be some source of information for disability questions not only from individuals, parents and professionals who service folks with disabilities. There's a host of other folks that could profit from such a project even clergy. So just a discussion left my head kind of spinning about reopening such a project and how I might be able be part of something like that. I don't know for talking a job, a board position, or just sitting on some sort directional committee. Either way it might be fun and it be fun to get myself back in the some form of information and referral in the area disability area sure needs it.