Hard Times

My recovery continues it seems positive increments are infinitesimal what needs to be done under the duration of time is allowed for professional intervention. I was told last week that my 12 weeks of outpatient physical therapy has just about concluded I was amazed at first thought the outpatient Hartman had made a mistake and sure enough for three visits a week 12 units at a very quick. My therapist is going to try to find some foundation or something which assists low-income folks needed therapy. I do not hold much hope that she will be successful but even if she can find a few Sessions, these would be better than nothing. I believe I am making strides but as I already indicated these are small Gains and leaves the big picture wanting. This last week we are I did better transferring from chair mat and back again this is really difficult but I am doing it. I almost think with the electric bed might be able to transfer into bed and out. I do this I might be able to at least one visit from the home health aide today. Trouble is shall I fall I am in big trouble. Because it seems I am pretty much on my own.

These are scary times for me as I ponder been this disabled and living on my own. I am thankful for the progress I have made an seem to be making for physical therapy or rehabilitation. I still don't know how you do it alone however I know there are a lot of folks out there in worse straits then I Who seem to be making it okay. I must admit I have been spoiled find it hard doing things entirely on my own. But if this is what the fates bring that I must accept, shoulder the load and carry on. I wish there was another way, but at this point I don't see another way out. My poor wife is over Burdened and needs out to save herself. As I said I have so grown to depend on her thoroughness and ways she looks after me and she can. I truly feel my life will be significantly shortened When she leaves.

I think the gains I've made this last week at PT. I already to start transferring to bed and maybe in the morning by myself. I may have to really look into using my manual chair because it's tthe only wayTo make these transfers independently. It shall be risky but I think these are the next steps which must be taken.

Saturday Morn

It's a beautiful spring morning, someone is pounding with a hammer on something far away, You know that muffled sound we hear.? When someone is doing something off in the distance. Soon, lawnmowers will start the kids well be out on their bikes as a spring weekend takes off. This is a perfect day for getting out the garage working on sticks or even tortured up the barbecue doing some ribs or something, hell I would be tickled just roasting some burgers and dogs maybe even some chicken parts.

My care provider was an hour late actually almost as I read a half late, I need to follow up and find out exactly what time I have scheduled for my care provider to get me up. I know I must be patient but when you pay for a service you should get the service. I care provider this morning is a little fellow from Peru. He's a really nice guy he used to be my favorite now I'm finding Carlos just seems to be interested in providing whatever I want In as little time as possible. There's so much inconsistency from one worker to the next kind of blows my mind. I wish I was a better manager, I've always known I'm not a good manager I cannot tell people what to do or have a difficult bossing people around.. Some people love it I don't. So, I guess I called the agency and lodge a complaint but that is so stressful. Something seems to be going on with the agency I get my health care workers from. It seems like they are struggling to find enough workers to meet the demand. And, quite frankly I don't care as long as I get my needs – – know that's terribly selfish but I'm struggling to pay for the two hours a day service that I am getting… Are not getting. Like this morning Carlos left there still 20 minutes in the hour that I will end up paying for. I know it's a little thing but it's just kind of irksome.

My spasticity seems to be returning this kind of freaks me out.. Actually, again it's not so bad during the day, and I think I am still sleeping pretty well, at least when I lay down I tumble off in to sleep pretty easily. However, I wake about 4:30 AM and notice that my legs are becoming more and more spastic I'm contemplating keeping some baclofen next to the bed popping a couple when I wake. I wake because I have to drain and after draining I notice the spasticity. I was really hoping the operation for the stenosis would and this issue. Still, the spasms are not near as bad as they were before the operation. Later on April I have a meeting with Dr. Daly the neurosurgeon. We may seriously again, consider placement Of a baclofen pump. I'm a bit worried at how long I can keep baclofen pump, which would embedded in my left hip, in fact and functional. Just so many things to consider is overwhelming sometimes it makes you want to go out and just sit in the sun and jus sunbeast all day.

Spring

Today is the first day of spring or rather Spring starts today I'm so pleased to meet through another season especially a winter. Even though this winter did not have the snow and other moisture issues I deal with a difficult season it was a very difficult season for me. I had the issue with the stenosis then the surgery and now the rehabilitation. Perhaps the most stressing issue I've encountered has been my loss of independence. I've lost my ability to get up in the morning and go to bed independently which includes taking a bath and taking a dump. Dressing and even pushing a manual wheelchairs seemed beyond the question right now. Because I cannot transfer independently once I'm in a wheelchair for the day that's where I'm staying unless I can figure out a way to jump to another chair. I would love to be able to do this is not happening right now.

The upside is the rehabilitation seems to be having a positive impact  downside is the cost of living with this Disability is crucifying us. It is so trite to say money our finances wrecked their wedding are their marriage but I can see how that is possible. Even now we have to make a conscious focused effort to say that we will continue on as a couple while struggling under the burden of my disability and what I need to survive. Need to make some sort of money or increase my contribution into the pot.

But spring like Monday mornings brings new hope to me. I hope I can make it through this season and into my joyous season of summer. Now I just keep my body together enough that could happen. I mean to enjoy summer hot temperatures is little closer possible. I really do believe my nude sunbathing helps mellow way around. However, not being able to undress myself may put a dent in some of that behavior. But we'll see – – I've noted with some dismay how little time I have myself nude anymore. Since I no longer bathed myself and since I have two have some undress me and undress me I have very little time for just me and myself and I find I miss that odd as it is. Yet, another goal to strive for in my quest for reacquisition of independence.

Memoir Time?

My morning caregiver was An hour late. I like to get up early and seems like the earliest I can get a caregiver over here is about 7 o'clock which is okay I guess, that's early enough for anything I have to do anymore. But for some reason Carlos, that's my caregiver on Saturday mornings, thought that might get a time was 8 o'clock. Which I'm sure he would appreciate because he works so hard. I have to admit he is one of my favorite caregivers is very gentle and pretty thorough and sometimes just have to wait for him seems to have a real busy life. Carlos is from Peru, is been in the states for some time has a good command of the language and I think this pretty well for himself. I know he works extremely hard as a caregiver the hours are horrible and caring for people with disabilities or dying Is hard on him. He told me today and events he had happened to him the other day when he walked in on one of his morning patients and found him dead. It shook Carlos Up quite a bit. It was kind of interesting to have him tell me how he handled the situation. I think you needed to vent to somebody that's okay, I am glad I could be that someone today. What I found was really interesting though was that he was considering writing these down as part of his memoir. He says he's had a number of very interesting experiences as being a care provider. I think if he can sit down and write his thoughts out Carlos might have something.

This of course got me thinking, as you all know I've been playing with the idea myself but I can never bring myself to do it. To sit down and write stories out. I know I can do it I know I've got the material I've lived through it. The last couple of days I have noticed an image taken of myself and a friend of mine that I went through rehabilitation with initially some 50 years ago. You are close in age I think he was a couple years older than me I know he was in high school but he was quite a bit different than I was. We were both quads but his injury was a bit more significant than mine. I had a bit more mobility but we sort of hung out together because we're the only quads we knew. The pictures great I think I'll put it on today's post to you guys, really at the beginning of their lives quadriplegic trying to figure out what to do next in a city in the time that disability was just beginning to come of age. So I was thinking when I use this image as a starting point for one-story and seems to meIt actually stimulate more stories about being a quadriplegic or partial quadriplegic in Boise Idaho in the middle 60s. I would have to do some research just make sure my facts were accurate but heck didn't matter this is what happened to me as I remember and Gene too. We were young and we had adventures.lick save

Back To Rehab

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I cannot believe how busy I have been this Monday and that's inclusive of the fact that I'm no longer getting in the house our home rehabilitation. Friday was my last in the home rehab session. However day after tomorrow on Wednesday I'm scheduled to show up at the sugarhouse clinic where I can start my outpatient rehab program which are be about regularly 2 o'clock I hope. That is a time I could make pretty well using the transit and my power wheelchair. Now I just have to keep my fingers crossed in hopes that this chair holds out until whatever new device I might be getting decides to show up. So this means I am still spending a lot of time on the phone making contact with those folks who are in control my life all because of my disability.

In this area of disability and focusing more and more on the fact that I'm spending roughly $50 a day private money my money on attendant care. This comes up to $1500 a month and I just don't know how I can maintain that an continue to live with a mortgage and anything else that we need to do. I am toying with the idea of trying to figure out a way to get back into the workforce to scam off a little bit of money that might help with this need for attendant care. There of course is the silver bullet are the cloud with the silver lining that with intense rehabilitation I can increase my strength particularly among left-hand side that was most affected by the stenosis and get back into being and more controlled by ADLs particularly toileting and showers. In fact I was sort of grousing about this this morning with my morning attendant and I mentioned the fact that I need to just do some writing and sell some writing which might help. He sort of perk up indicating that his girlfriend is editor for a local newspaper Salt Lake what's happening type newspaper. I have for many years wished that there is one type newspaper like this that actually did focus on things that needs challenges and issues facing people with mobility issues and other disabilities in the entire area. Everything from politics to transportation to attendant care to recreation all things disability. I think there really is enough disability to justify such a thing and just the main population of Utah add-on does this now that aging population that really does need everything from attendant care to assistive technology accessible housing to affordable and accessible transportation then you've got a sizable population that I think might benefit from such a column are stories and a local mainline vehicle like Salt Lake Weekly magazine even if it's just a listing of areas of entertainment that are wheelchair accessible are how to get around in the area in a wheelchair and again this is everything from landing at the airport, booking inaccessible cab in finding an accessible hotel room. I mean I don't think I would be able to write enough to cover all my attendant care needs but maybe some what help you never know. This is a pipe dream I know my buddy Frank and my buddy Jerry both who I feel have major credibility have indicated I could be successful in these areas if I just did it.

I was going to write a segment or a blog today about my buddy Jerry who was in Arizona for the spring training of the professional baseball leagues. Did a search and found I had written blogs similar to this a couple of times so, I felt I didn't need to write another however, I was yet impressed with how much I have written how I think a lot of it might be worthwhile. Maybe gold staring me in the face and I just have to reach out and grab it.

Marching Orders

One would think reading my blog that everything in my world revolves around me! Right now, it sort of does. Seems like I've been focusing on my healthcare providers this week and I'm still focused on them because if I don't start rehabbing, and I mean really rehabbing soon I do not know how long I can afford to keep these assistant care folks coming in and helping me. I mean it's really wild half an hour in the morning or rather an hour in the morning and our and evening at 25 bucks an hour is 50 bucks a day! And that's every day even weekends so my math works out to about $1500 a month. I mean I have a little money set aside but nothing that can sustain that kind of support for any length of time.

Yesterday my home rehab therapist aide came for the last time. Actually, he was supposed to I was supposed to see him on Wednesday but that's when Dianne and I went and were seen by the: direct all colorectal surgeonwho we had check out my butt hole to make sure I was okay. Some disturbing issues had arisen over the weekend causing for some very strange looking protrusions from my anal area and we had a get it checked out to make sure it wasn't a full-blown prolapse… Which it was not praise the Lord but still something we have to watch carefully and be careful how I'm treated. I kind I have a hunch that what seems to be the prolapse hemorrhoids is exacerbated by my time in the sling that we use to toilet and shower me in the evening and morning. Dianne has been so supportive during this whole process assuring me how help the I seem to be in the midst of a complete body breakdown. And she's been right with just a few twixt here and thereI seem to be doing okay. I mean even bouncing back to a certain degree. Little concerned about the now spasticity I seem to be getting back so I may have to revisit the whole idea of the baclofen pump one more time. The good Doc, Dr. mayhem wishes to wait a number of months before we examine this question to see how much return I get in I totally agree with the Doc. I have gotten so much better and then with added physical therapy I think I will do even better but if I have to do something to alleviate the spasticity then I will have to do something like the baclofen pump really that didn't look like such a big deal. Just a thought can stuck under your skin surgery relatively minor and I'm getting better at dealing with this kind of stuff don't ask me why go figure..

So, to continue to work on my left side to see if I can rebuild it also the whole body in general just to see if I can manage it better particularly to the point of being able to get up get out of bed and into bed on my own and get rid of this silly tender care stuff.

Hospital Confinement

It's snowing, it's been snowing all morning and I suppose that's good and needed a bit of moisture was good be the desert for the next couple years will feel like a godsend for this country. I really think it's going to get and it's going keep dry for a long time. If we survive it's going to be how we maintain and monitor our moisture supplies that sounds really boring so let me wander away to another tangent.

One of the things I found most interesting during my recent stay at University Hospital was actually staying the University hospital. I was there for about three weeks and it was so weird to wake up during the night over and over again( since they would wake you up for me every two hours or so)And not know where I was at. I always sleep on my side and doing so I face the outside window which actually was quite lit up with the side of the hospital And in view of all the rooms of the hospital my room opened up to. I would hear the people in the hall the nurses, orderlies and docs I guess wandering about. It always took two or three minutes for the reality that I was in the hospital to sink in. Then I had to figure out how I got there what was I doing in the hospital again? What happened? Finally at some point towards morning my nurses and other staff would begin wandering in and I would then fall back in the reality. I was at University Hospital, I wasn't quite sure with their board to do to me are what they were doing to me are where I was headed except for My day was starting I better get ready.

Now that I'm home in a room all by myself with a hospital bedI still get a little disjointed at waking up and wondering how my day is going to go. I'm soon going to be phasing out of home rehab where people actually come to the house give me physical therapy and other medical attention. Think this is good I will be motivated to get back on the road and work at strengthening myself trying to get to a more independent status. I've enjoyed my home physical therapist he's a bit awkward and I think a bit maybe lazy but is okay because give me some good pointers is not been afraid to try stuff. I'm currently sitting in a manual chair which he has suggested that I do as much as I canIn an effort to strengthen my body and get it used to standing not so much as it can. This is very challenging for me. I really do like my power chair I like everywhere that takes me. But truth be said I can't do very much in the house with the power chair so the manual chair really is good for getting around washing dishes doing some of the fine points of being in the house. I'm a little excited about starting outpatient rehab in hopes the physical attention will greatly strengthen my left side. I've been looking at some of my nude pictures where I have my left arm flexed and I really want to get some more taken to see the difference.. This of course may be dicey but what can I say it is the best way to see if I'm actually doing any progress.

So kind of personal goal I've given myself is to figure out a way to get from my manual chair back to the power chair somehow during the day. I don't know if this is possible I don't know how long this will take me to learn to do again it's possible of all I don't see why can't do it I did it once before and that's been my mantra through this whole ordeal: I've done this once before.

Marching Forward

I have done it again, I had my home healthcare attendant this morning put me in the manual wheelchair in hopes of building endurance and some strengthening in the manual chair with the hopes of getting some to transfer me into my power chair at midday. Of course I did not speak with anyone before before it makes its decision so of course but I need a list there is no one around to assist right. Fortunately for me I was able to reach Mark at the who informed me that he would be able to get by with place a couple hours and give me some assistance then which I really really appreciate.

I do like being in the manual chair I like the freedom that it gives me around my house and do things I can get to that I cannot get to my power chair is just a shame is always a trade-off like this me there in the chair all day are not in the chair may be a just have to realize I will just have to pay someone to get me in and out of my chair and that is just the way it is. I figure it'll cost about 24 bucks for the service that's the going rate unless I can figure out a better deal. I keep hearing about people who cut deals for attendant care but I just haven't been able to figure it out yet or who to contact in as yet. I just wish I was able to physically lift myself in and out of my chair at well like I used to. Well I have my work cut out for me to myself fact that physical level and maybe just maybe his March will be a good month to achieve this goal.