December 10, 2015

I got the word yesterday. I spoke with one of the people from my neurosurgeon's office. My MRI has finally been read. My medical professionals have this great program where they list all of your medical stuff on the Internet and you can go access that information as soon as it's published. Dianne found my MRI results and Printed them out for me. However, I was not able to make heads or tails out of the document except for getting a bit of a sinking feeling that all is not as well as I felt or looked. I figured I would have to call Dr. Daly's to find out more information and see what my next step will be. So I was a bit relieved but shocked yesterday when I got the call From daily's office. I don't remember much the call at least the specifics the feeling I got was the dark Dismal. All I remember was the woman on the other end of the line saying “Dr. Daily feels we need to get that stenosis out. We can schedule you for December 10 or anytime after the first of the year.” After that nothing else was just a buzz In my earpiece. My knee-jerk reaction was by all means January or as long outdoes I can make it. I did the cowardly thing by deferring my decision of the surgical date until I had time to speak with Dianne.

It's kind of funny about how putting a date or time Event suddenly makes the event real or concrete. The changes from something “out there” to actually something definitely concrete and going to happen. When Dianne got home I informed her and she looked at me like what you just take the date December uncolored good? I just want to make sure the date was all right and would not conflict with anything else we were doing so close to the holiday season – – like we do anything for the holiday season. I was just doing my last bit of denial.

So I called yesterday – – Wednesday – – let them know that December 10, would be fine just fine. It's funny how do them/staff of the doctor or hospital is just another date on the calendar. I could visualize Susan Scribbling my name down On the calendar or type my name in the computer calendar, popping her gum and going for next task, Not knowing or possibly even carrying about what that date means the person on the other end of the phone. But that's okay – – more I thought about doing the operation sooner than later probably works out for the best. Even though I lose Christmas and New Year's I would've lost those holidays anyway fretting about an upcoming operation. Now for better or worse surgery will be done by the time the holidays roll around and hopefully – – I'm still around – – I will be recouping heading towards a better life of less tone and doing rehab get myself ready for the summer of my 65^th year. It's going to be a very good year

No Strain No Gain

I'm just in from working out. The season has finally caught up with the calendar. It's cool and wet outside with the breeze which makes me ambient temperature of 57° feel even cooler to me. It's Monday and really it's the first time back to the gym this week and I missed Friday because I had forgotten to plug my chair and Thursday evening. Even though my chair probably would have made it to and from the workout I just didn't want to chance it and stayed home. I knew the weather was going to be cool. I still have my window cracked in the bedroom and listen to the rain overnight and it was chilly this morning when I got up. My brother asked if I wanted long pants but I'm sticking to my shorts right now… Don't know why except for one of the longest summer and be as little problem was possible for those who have to assist me in my activities of daily living like getting dressed and undressed. So I dressed in shorts and found a light sweater to wear knowing I would be cool and thereby uncomfortable all day.

Dianne my coffee in the to go cup that how to secure top that wouldn't spill easily And out the door I went. I was uncomfortable but not too bad Sort of like a toothache that has not gone nova. It's always a cool wind that blows down State Street. I just focused on my cell phone reading emails waiting for the bus. But the bus did arrive I was more than pleased for the hheat coming out of the door. I was early today so I dallied here and there on the way to Wellness. Stopped at Barnes & Noble checked on the titles for science fiction also stopping in Whole Foods and snagging samples were I could. Got some nice cheese samples and of course grapes. I have been out of grapes for a couple days.

At Wellness it was good to see the folks I usually work out with and it was good to see that Ellsworth was back from his nose operation and recuperation. He was off all last week. Not many people at Wellness this morning but those who were there were quite labor-intensive for Ellsworth and he was the only one on. So I chatted with Mark and Mark and Tony when he came and finally Ellsworth was able to assist me in my lifting. However, I mentioned to Ellsworth that My right wrist was hurting and my hand was intermittently numbing. I had already done the rickshaw and chest press and was working on rows but after my first set I mentioned that my wrist hurt which began Elsworth interrogating me as to when, what was I doin when I first noticed the pain and how severe is the pain Ellsworth essentially shut down my workout at that point in time. Indicated that if there was pain I was not to work out. I was amazed but I follow his lead and he seems to know what he is talking about.

I've also noticed that where my glove on my bike also irritates the nerve on my the ulna on my right wrist.I do not plan to stop riding my SaratogaBut I really want to get rid of this pain and and frames not related to my stenosis… Just another thing to ask neurosurgeon if and when he ever calls back.

Sunday Limbo

I had really hoped I would of heard back from my neurosurgeon by now. It is now been more than a week since I did my MRI. I mean the whole point getting my MRI done as quick as possible as to get results and begin developing the next plan will be. We did hear back anything by Thursday Dianne finally called on Friday to be informed that Dr. Daly was away on conference would not be back until next week I guess for Monday. So the MRI has not been read And we are sort of sitting in limbo.

The weather has finally cooled with a cold front wandering in last night clouds the day and rain overnight. I still have my window open a crack the cool wind feels great over the evening hours but that be ending shortly as the temps continue to drop. Sleep is coming somewhat better as the meds continue to get a foothold on the UTI. I have rough nights though,last was tough with only a couple hours sleep—waking feeling like I need to drain but only draining 200 Ccs and then not being able to return to sleep. I'm a bit groggy but not too bad. I continue to wear my shorts. I think this year is record for how late I have worn shorts into the fall. I may even wear the shorts longer because I feel shorts are much easier to dress me with then long pants.

My current Project is trying to sew my hoodie that I tore up a year or so ago when I was wearing my hoodie around my neck and the garment got caught in my wheels and rip the hell out of the hood. I finally got some thread and Needles and have started the job of sewing the item back together. This is good and being much more difficult task than I like but something do. I don't think my sewing the last But maybe long enough and I can always go back an resew If I need to. I just hope I get this project done for spring that sort like to use the hood on my trips back and forth gym.

Its that kind of Sunday, Not much is happening just trying to get by. About ready to go start mixing up a meatloaf for dinner. I love meatloaf with lot of ketchup and a baked potato with sour cream perfect menu for cool autumn day.

Waiting By The Phone

The autumn days just keep coming One perfect day after another. The mornings are cool but quickly burn off to beautiful afternoons. Saturday was such a day Saturday my date for my MRI. See what the weird time 1 o'clock in the afternoon for my MRI. Usually I have these Procedures in the early morning. But since I kind of demanded that I get the next earliest appointment I got stuck with 1 o'clock on Saturday afternoon. That's okay I doubt that of been doing anything significant anyway.

We got To radiology right on timeAnd I was kind of surprised at how busy everything seemed to be. I kind of expected tumbleweeds for Saturday afternoon radiology clinic. Dianne had taken great effort to make sure that I was wearing clothing without any mental saw we not have to strip down and do the night thing. Of course they had no lift speak of so they had to get muscle to load me on to the donut. I once again selected Billy Joel for my music after complaining that the last time all I got was to Billy Joel songs and then selections of near like Billy Joel songs. This is because they use a music provider like Siri or something but forgot about his way to load up a bunch of Billy Joel's from the Internet.

They laid me out on the machine and I sort of think my spasms are getting worse – – maybe more about that later – – however I was able to lay pretty still for the duration of the scan spasming only two or three times and even then not very noticeable. The selections of music worked really well and 45 minutes seem to fly by which was a blessing. There is something awful snarky about doing an MRI on a Saturday afternoon. Anyway the tech said I did good and got very good images what that means I can only imagine but we'll see now.

So now it's Wednesday almost half a week since my scan and no word from the Neurosurgeon. So, taking matters into my own hands and make a call this afternoon I got home from Wellness. Of course I was immediately stuck into (hold time) But eventually someone answered the phone And after giving that person more information informed me that of course he could tell me nothing about be sure to relay this information forward to the surgeon or clerk of the surgeons business someone would get back to me hopefully by the end of the day. I'm sure I hope they will not tell me anything and that the best I'm going to get is a date to meet with the Doc again When we will really get down to business of whether or not I will need another operation. As I indicated earlier I sense and other people have told me that I am getting stiffer this of course means spasticity is increasing. Nothing like I had before and still not a good sign and I am sure something that Doc will want to hear about. I just wish things would go back to being normal or maybe this is the new normal.

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The Incredible Shrinking Man

Last night when I went to bed Dianne noticed that I had to small skin breakdowns on my butt this is kind of terrifying to me. Decubitus ulcers are pressure sores are some of the worst things people spinal cord injuries have to deal with. Over the years my skin has become more and more delicate and I must be very careful when I do get these skin breakdowns. These breakdowns I'm convinced are directly related to my power chair being out of commission having to use my backup chair. I love having this backup chair and the ability this chair just me to be independent And carry on my life. However, the chair is too big for me and I do not have the appropriate cushions for this chair which therefore leads to a rocking back and forth when I drive the chair which wears through my skin. Dianne has crafted a synthetic skin Which works pretty good but still I have to be careful when I am up in my chair. Therefore my activities on the outside have come to a grinding halt. This used to drive me crazy but now think, I am beginning to accept the fact that I'm not as “not as out there” as I would like to be or even as I perceive myself to be in effect I am becoming invisible. Like Frodo with his ring I feel I am becoming more and more invisible each day and somewhere deep inside I am okay with that. Last week I only went to one of my Wellness programs meaning two days I did not work out lifting heavy weights. I think I only used my Saratoga silver three days Because it was too painful sitting up on my sore butt.

I called the durable medical provider today, the company that I bought my power chair through, they indicate another week to seven days before parts arrive needed to repair my chair. This used to infuriate me but now it's like ho – hum... Okay. I'm spending my days tilting back in my chair trying to squish the squishy stuff in my cushion back under my hips for comfort and protection and this seems be working for the time being. I'm even considering with enough Amazon Prime selections on my cable staying bed all day And tell my repaired chair arrives or mighty pressure sores heal. Right now the breakdowns very small and I don't think would take much down time to heal and I'm willing to go that road if I have to.

But back to my main point regardless of the issues I'm becoming smaller and smaller and soon I will be invisible and perhaps that is not all bad. But maybe when I get my chair back and back in my regular cushion again maybe I'll get rejuvenated now be able to push back the desire to rub the ring and be less seen.

Death Be Not Proud

I'm going to die! I wish this were not the case but I'm having to come to grips with the idea of my evitable end On this last marble. Oh let me put your minds to rest, I don't have cancer, at least not that I am aware of right this minute, and have not done the MRI that we spoke of yet which may or may not have some liked to timing but the fact that I'm 64 and and questionable health is making me consider true end-of-life scenarios.

I cannot believe how typical I am of the baby boomers. I'm essentially poor, I'm thankful for health plan that I have but It's a pretty dismal The plan really leaves me the lurches in the number of ways. We are caught in the feeling of circling the drain of our current style of living. Just one pick up medical or Otherwise we would be down the drain. So we are living one day to the next hoping for the best.

When we met with my neurosurgeon last week speaking of the remaining stenosis and what happened what could happen when he tries to remove stenosis you actually said I could die from the operation, if the operation is warranted. He did not say to get my life in order our anything as dramatic but I got the message. In fact the past couple of years Dianne and I talked about how he want to and for each of us to play out If and when The dark Moment comes. I have even considered writing my obituary just so no one else will have to deal with that issue. I assume that writing some other person's obituary is always a drag or at least it would seem to be. If the person's death was not scheduled and an obituary is not written someone has to make something up pretty fast and I've seen some of those obituaries and they are not pretty. So writing one's own second allows you to exercise your creativity at fiction more important have some degree of control into the process and how you'll be considered in the end.

I do not have the time or the inclination at this point to discuss my conversion from a burial to cremation Let's just say been a long time coming And though I'm not completely comfortable with the concept of being incinerated I no longer feel that burial in the ground is the only way out. It must have been a large part of the decision has been based on cost which is not cheap and how rude and crude the whole concept is when one thinks about Ground burial.

So I'm thinking “why not?” After I made this acceptance I started thinking about where I would want my ashes spread. Truth be told that many places left I would want to be spread. The little farm I was brought up on as long since been dissected into smaller homes. The “cabin” my brother and two friends used to hang around as kids I'm sure has also been co-opted some sort of river bottom estates which is a shame And two half acres which is to be desert property of my families as long as so and I'm sure also been gentrified.. So I've contemplated what was left: there's the Boise River By the islands were used to hang out as kids and again I think like our It is co-opted by rich people. It seems like such a waste dump my ashes in the river just because it's the river. I'm thinking which might be a good place might be table rock. Table rock had a quarry at its rear and rises up ove Boise city And I think well stand there for the next thousand years at least. There's a regular housing that has taken over Table rock but I'm hoping the quarry still remains and if so can I get someone that is indeed there? I think that's the place. Of the four of us to enjoy that area one has cancer, one has Parkinson's getting close to the end stage and one is my friend John who to my knowledge has no significant health issues aside from aging. Have not yet talked to about this idea and whether or not he would even go through with it. We were relatively close growing up to adolescents and then went our ways but we'll have to see. We'll have to see.

As Good As It Gets

Clouds rolled in during the night and about 2:15 in the morning, this morning I was awakened to thunder and rain coming through the window. The temperature had dropped significantly and my whole world felt like Fall had finally reached my room. I was not aware, although I felt a few drops on my face during the night, that rain in a significant amount was coming into the room. My bed is right under the open window and one of my blankets got fairly wet To the point that my brother was concerned when he came in the morning to be dressed up in my chair. Thank goodness I was not aware of the event. I was quite comfortable upon his arrival. There's nothing I hate more than having wet blankets and having to call with the wetness through the night.

Today is a wet day feeling like the fall that it is and I like that even though it will limit my ability to be out and about but as I mentioned in earlier Blogs my ability to be out and about is quite limited due to my broken Wheelchair having to use my two large backup chair.I am unable to sit upright in my chair there by putting too much weight on my right hip risking skin breakdown and just plain discomfort. The cushion I am forced use does not have the protection I need. Dianne has come up with a great idea of taking some of the pouches in some of my other Cushion and put the pouches in the cushion I use. This is a great idea. Hopefully, sometime during the weekend we can achieve this. Hopefully, my broken chair will be repaired and I will be back in the saddle with the chair and use and be comfortable using. I need to be careful because I can see staying home all the time could get quite comfortable. I really need to be out in the community doing what I do which may not be a lot but I need to be out there. My need to be in the community seeing what is happening having the community see me seems very selfish but it is who I am and I seem to have any be out and I can only do that in a usable power chair .

Dianne brought home a dozen meatballs yesterday shopping excursion after Ani's volleyball game. We need to use them fairly quickly And nothing like a fall day to make me feel like cooking so I went to work chopping onions and garlic's opening cans of tomatoes, mushrooms And green peppers, throwing them all of the Stove to simmer and mix their wonderful flavors To produce a wonderful sauce for to night's spaghetti.I only wish I could've produced some sort of garlic bread that or garlic toast that would make a perfect dinner.

I've been busy today cooking, writing and doing some physical stuff. I even made a list of things I like to have accomplished today I don't think I'm going to get it all done but the list has kept me on taskAnd kept me away from watching recorded movies on my flatscreen. Sometimes as good as it gets.

What's A Person To Do?

It is warm and almost blustery today, this first day of October feeling more like summer then Fall. However that's okay supposedly home front will move in tonight bringing lower temperatures and possible thunderstorms sounds great and of course this only makes sense since it is conference weekend and there is always poor weather or conference.

Well we finally had her appointment with Andrew Daly M.D., neurosurgeon and I think it went okay. We went about a half-hour early as requested and had x-rays taken so we met with the Surgeon he was up to speed Seemed quite pleased with the results of surgery and the healing that had taken place. He of course asked how I was doing I was truthful as I could be Fearing the worst which can result from my answers. I have to admit I am terribly frightened of any further messing around with my spinal cord. Dr. Daly explained that the pressure and been removed from the spinal cord and spinal cord seemed to beFilling in the space which is what we wanted. The big knuckle still remains And the Doc seems cautious to do anymore surgical intervention, Which is fine by me. He even suggested more than once that with the release of pressure the other stenosis may disintegrate at least that's how I am reading his comments. He did order an MRI which I'll be doing in aboutncel a week and this will be the teller. If the stenosis Has not grow and let it stand Keep an eye on the area. However, if there is activity with the stenosis that we will immediately surgically interesting. When I asked the doc about tWhat the results might be from such procedureHe indicated anything that from complete quadriplegia to death– – Just don't know about the brain and spinal cord. He agreed with me that operation on the stenosis at best is a crapshoot. This of course scare the hell out of me and since I am not experiencing any significant symptomology of increased stenosis impairment and then I'd say fuck it, I'll take my chances until it looks like I don't have anything else to do. He was all for immediate action visiting growth… Crap. Then I read on one of the disability forums that I dropped in on every once in a while, that many times stenoses will grow back! Unbelievable.So there you go what is a crip to do?

Good news on other fronts. Make contact with Alpine medical and it sounds like I broken axle is going to be covered by warranty! As much as I appreciate the coverage it will still be probably at least a week if not longer before parts command and the actual repair the power chair is accomplished. In the meantime I am trying hard not to aggravate my ass I can tell skin is fragile and cushions I have just not cutting the pressure on my butt. Therefore I have really quite limited my travels outbound, which of course includes Wellness. This also included any involvement with the national action with ADAPT. Which is kind of bad I think I would've enjoyed more involvement with this group even if it made me uncomfortable. It really is a shame that Salt Lake disability people are not more supportive. Salt Lake ADAPT could sell themselves a lot better to do a lot more marketing of their events. The group really does need help I just wish there were not so spooky. It's all such a scam on both sides, what's a person to do.nt