Last Day

Last day of the month and first day back following a major holiday. The phones have been light but busy enough to get me more then the ten calls a day I some how think justifies my existence with the State. I did not sleep well last night as I near the biopsy day—I just wish I knew just how disabled this event was going to make me.

Global warming continues to render perfectly, beautiful, late autumn days—granted Salt Lake City is sitting at the bottom of an inversion does not change the fact the sun is shining bright in a perfectly blue sky and if one keeps moving the days seems warm and somewhat pleasing. I dashed out at lunch, cashed my mileage check, bought a loaf of bread and did some banking. I am bundled in my heavy winter coat and black watch-cap. I look like one of those nim-rods who always seems to be over dressed.
then as I try to get into this post Franks walks in and advises me that I need to have a quarterly report done first thing in the morning What a joke...Just one of those Mondays

What ??!!!

I realized this morning that my Thanksgiving holiday is all but over and I a looking down the barrel of Christmas. I think I am going to enjoy this Christmas, more so then the others since I don’t know if this will be my last Christmas. This week I have more medical stuff to consider—the dental appointment on Thursday, that is just to get the final cap on my tooth. The tooth capping is no big deal but the following day, Friday I have the biopsy at University hospital. I really have not too much about tis event except that it was “hanging” out there like a black balloon just floating waiting to pop and let out all of whet ever is inside.

Actually, since the cystocospy went so well, I have not thought much bout the procedure coming up Friday—since the procedure is essentially the same except the doc “snips” a little here and a little there and that is about it. I know I am going under a general anesthetic but I really did not think going under an anesthetic was a big deal—that was until I was talking with my workmate, Frank when he asked if I were going to take anything off after the procedure. I mean one of the reasons I chose to have the biopsy done on Friday was I would have the weekend to recuperate—if I needed it. I did not think I would—I just did not want to take anytime off if I did not need to. Somewhere in the back of my mind exclamation points began to fire: just what doe Frank know that I don’t ? I just bluffed Frank, I was tough regardless and I would be OK .

Last night Dianne seemed a little concerned indicating how was I going to drive my power chair to get in the van after I have had my procedure? “More exclamation points firing off. Just what the hell is gong to happen to me that I am going to be so messed up that I will not be able to drive my power chair safely. I suppose I could push my manual wheelchair to the hospital andf back but that would be imperially dorky; and again, how messed up am I going to me and more important how much pain and misery is this procedure going to render?? And of course, I am in denial of what the procedure is actually for—resolving those “peculiar objects”Dr Myer saw in the cystocospy—I mean this is what should be blasting exclamation marks all over the page but strangely I am feeling OK. I suppose if the worst case does present itself I will just have to deal with it. I think if it is bladder cancer…I could cruise for quite a while before succumbing…I hope. Hopefully, the cathing and such will have calmed down the bladder and those fiery red walls we saw on the cystocospy will have settled down. Hope, hope hope.

I have yet to write any Christmas cards let alone any shopping. The temperature outside looks to be in the fifties. Now snow, kids riding bikes and skate boards in just their shirtsleeves—it looks like Spring rather then the first week of Advent. Oh well I am just excited to see this Christmas—and maybe even Spring.

Long DayClock Watching

Today has been one long quiet day in the office, ths last working day before Thanksgiving. Frank and I are the only staff in the office today everyone else has taken off, left town. I probably should be home working to bring the house up to visit ability standard since we are hosting the Thanksgiving dinner tomorrow. We are supposed to have just Bridget and her family over so maybe we can get away with more messy a house then we would normally feel comfortable. The only other visitor I can image would Mark A and maybe Jasmine but I have not heard from Mark A and I know he has had his hand full with the moving of his family the past couple of weeks. Traditionally Mark has been stuck doing the dinner thing with his inlaws—or with his step-father’s celebration…I really don’t understand I just try to have a turkey cooked and let those come who well—in any case I hope to have everything done by mid-afternoon, with people napping or heading home. I still have two hours to go here in the office, the sun is beginning to set and there is an increase in traffic round our building as the Energy Solutions Arena is beginning to fill up for the Trans-Siberian Orchestra or what ever, the crowd is quite a bit different then the regular basketball fans which usually fill up the late afternoon parking: more cultured outfits and hair, nice coats and a lot more women then usual.

I sense our building is essentially empty. The Mexican, upstairs did not even come in today. I suspect a lot of other State employees took the day off. The commuter buses which park infront of our offices are empty, they are just dieseling outside my window then leave empty. The parking scabs are dressed in their hoddies and orange reflective vests and orange flashlights trying to suck concert goers to park in their parking lot for five dollars a vehicle, the lots fill up fast—the guy who own the building I am sitting in will also start selling spaces to the public after we leave for the second performance later tonight. I am just waiting out the clocking getting ready to catch the next train out of town

TMI--Reader Beware

I have to watch my self—sometimes I think I give out too much information (TMI) about myself. I have noticed that I have been pretty graphic as I have tried to deal with this self cathing phase I am dealing with in my life right now. I have been fairly active on Face Book but for the most part refrained from going in to any great depth about the self-cathing experience; there fore I have used my blog for the deeper experience.

The truth is, I have been using the term self-cathing and intermittent cathing interchangeably when in truth until today I have been experiencing intermittent cathing with the help of Dianne. I have been holding off on the “self-cathing” phase—for why I cannot really say. I have really enjoyed having Dianne right there helping me cath in the a.m. and p.m. and three times on the weekends but seeing the size of the residuals I was producing and beginning to feel the discomfort I was beginning to feel by banking the urine from 530 in the morning until I got home at 6:15 pm, made realize I need to be “tapping” myself at some time during the day while a work. Dianne and I have discussed the issue, knowing the need I have for this even to the point of getting a community service nurse or something drop by the office and do the trick. I guess my insurance would possibly pay for this service or part of the service but this would just be another level of dependency I would just as soon avoid if possible.

Yesterday, I had the ARDC meeting away from the office and I had injusted a fair amount of fluid and by the time I got back to the office I was feeling pretty full of piss and I made the decision I was going to catheterize my-self and relieve some of the pressure—I went into the bathroom locked the door and laid out my items to cath, hand sterilizing fluid, catheter, sanitary cloth to wash the head of the penis and the slick goop the lubricate the catheter but I was dismayed to find the lubricant tube was completely empty so I hauled it ll back to the backpack, tossed the catheter away and held it until I go back home and drained as soon as I got home…and that was OK.

Today, Dianne packed the current tube of lubricant we ar using in my back pack and a couple of cleansing towelets and I waited till 3:00 and snuck off to the bathroom, locked the door laid out my items and went for it. Cathing my self was weird and a little spooky. Igot myself out and cleaned off and lubed up the tube and then pocked the cath in the penis and drove the tube home—it seems a long time as I kept pushing the tube further ad further into my penis, and I felt it pass the prostate which there is a little resistance and then a final push as I enter the bladder and the pee begins flowing from the end of the tube. I drained 400 CC’s which I wonder if I drained the bladder empty—but even if I did not drain the bladder empty I drained off 400 CC’s and that is enough for general relief and to let me know I can do this procedure myself if and when I need to. Now I need to integrate this skill into my home experience thereby not bothering Dianne’s sleep at 5:30 in the morning—though I praise my wonderful wife on getting up every morning and helping me cath.

A Pisser

So I went to the meeting today. I drove my van into work and even though I hate driving the drive in was not bad and having the van at the office will let me drag home the thirty or so boxes of catheters I got hold of a couple of weeks ago. I will be glad to get the catheters out of the office and safely locked up at home. The catheters are quit valuable in their own right--especially if you find yourself dependent on them. I left three boxes at the office where I can use them if I need. I was set to drain myself today after I returned from my meeting. I think i am retaining way too much urine and I am becoming quite concerned to the point I decided I was going to drain myself today. I ave not done this yet, and I fully think i cam capable I just have to keep the field and myself as sterile as possible. Long story short I failed. I did not have the slippery goop one needs to insert the catheter into the penis. I had everything else and most important the will to do such a thing. Maybe tomorrow.

Thanksgiving Week

It’s Thanksgiving week and the house is not ready and we are having the dinner at out our house and I m trying not freak. Granted it is going to be a small gathering this year with mom dying this last Summer—this is the first of the major holidays with out her. Without mom being here( on this earth as we know it) I feel kinda of lost. When mom was in Salt Lake we made sure that we gathered at Thanksgiving, at least. But now I feel the family drifting apart. The drift was predictable but still kind of sad. So this year we are having the dinner here with just Bridget, Gabe and Anakah maybe Mark A but that is bout all as I know at this point in time. It seems like the right thing to do.

The fridge needs cleaning, we have to make room for the bird and other items for the dinner. We have yet to get the turkey. I think Bridget is getting pumpkin pie from Costco Dianne is making the dressing and roles and that is bout it. Done! So, I have been trying to wash dishes an clean where I can but it’s a slow process and I doubt we will much more cleaning before the holiday. So, I’m working a three day workweek with a major meeting tomorrow, Monday and then I should be done for a while. Clouds rolled in today and temperature is dropping rain and possibly snow tonight. Its feeling like Thanksgiving but its just not the same with mom gone.

Almost Season of Miracles

Yesterday, I really was feeling good , in fact the best I have felt all week and feeling good sometimes clouds my judgment and I start making stupid rose colored comments and even almost believing those comments until the world steps in and slaps me down and puts me back into my place. I guess I need this, for what ever reason.

Dianne called during the day to let me know the hydrophilic catheters she ordered had come in. The hydrophilics are kind of special catheters, they’re very smooth coming with their own solution which is supposed to make using them slick as a whistle. From what I have read the hydrophilic catheter, is least probable in causing UTI or other complications like cancer of the bladder. This catheter seems much smaller then the other catheters but I was going to try to be open minded about the whole thing.

I was pleased to see the van parked at the train station, when I pulled into 5300 South. Dianne had come to retrieve the van from the Cousin’s place where they had been Winterizing the vehicle for the past couple of days. When we got home Dianne shows me the catheters and indeed these catheters are small an kinda of flimsy then the chloroplasts we have been using—but I am trying to be open minded. As soon as the 9-o-clock news began I hightailed it back to the bathroom to try out the hydrophlics. To me the whole system is complicated and the comfort extolled the catheters website and testimonials I read at more then one website did not live up to what had been reported. The experience was not necessarily painful just somewhat uncomfortable. The diameter is so small the it took for ever for the bladder to drain and when we had finished draining there was almost 800CC’s of liquid in the container an I guess this is not. I should be cathing sometime during the day at work and Dianne felt bad because she was thinking and hoping these caths would be the end all answer and now were back to square one with only few of the catheters we had gotten from the clinic. Then I realized that my wallet was not where I usually carry it—it was gone. I seem to have lost my wallet again-piss!!! Do you see the irony?

Then this morning I get to the office, no wallet, I was kinda banking on the wallet laying on my desk but the kid who had called earlier in the month was dropping off about 900 catheters Coloplast, 14 Fr, sterile with protections. I think these will do. I am hoping and praying a good Samaritan will find and turn in my wallet with all my cards and ID. But the catheters came into today right in time and I’ll deal with one miracle at a time…

Just About Back

I am just about back to the old me, that is I am feeling better, I have pretty much come to grips with the whole cathing challenge, got my teeth worked on and now I am just waiting to have the medical procedure, the biopsy, which I scheduled today for the 4th December( moving my tooth appointment from the fourth to the third). The internal bleeding has cleared up and I’m running clear and I assume health pee at each tapping. I am draining right round 700 CC’s of fluid in the morning an in the evening. I am really going to have to learn to cath myself to have a mid-day drain which might a limiting impact on the evening drain but I doubt it.

So I am back on the streets riding the train and trying to succeed at the job. I am starting my next year of interviews on Access Utah Now. I am not sure how my management feels about another year of interviews, I kind of get mixed signals from the boss but I am going head with the project. I have one more interview scheduled for this Thursday and then no more interviews until January.I am wearing my heavy coats and keeping warm traveling back and forth to work pretty much in the dark. The days are warming to the fifties but cool fast—slowly the city is moving into holiday mode. It’s good to be back..

Getting Comfortable with the Process

The sun is setting on this day, first day back on the job in nearly two weeks. The day has been uncomfortable but doable. Hopefully, I'll sleep better tonight and drain better tomorrow. I think I am going to just have to learn to cath my self safely so I can cath at work and other places way from home or away from Dianne. I mean, I have seen 'paras' do it and if they can do it I can do it. I just have to get more comfortable with the whole process.

I spent the day recanting my story of the time I was away on medical appointments, I had a tone of calls I am still returning and of course the new calls coming in today.Dianne got up with me cathed me and helped me dress and i was to work on time. The big trick now is replication for the reminder of the week. This can be done.

Tic, Tic, tic...

“Tick, tick,tick…” I thought I heard ticking, all this long, quasie painful medically drenched week but could not quite focus of the tickings origin, I am still not sure but I am getting closer and closer. I would have written sooner but by the end of each day I was so tired or freaked all I could do was zone out in front of the tube and weight for sleep time.
I finally had the urology test on Wednesday up at the University Medical Center, not from /rehabilitation where I have been spending a lot of time in the last 18 or so months.
Dianne has come along with me, at my request, I am so glad she did. Dianne was my protector, Dianne knew the questions to ask and how to answer the other questions or least, to nudge me on where I would get too spooked at something and “go tharn” and answer for me

The tests, Urology ran on me took almost two hours and we think I was catheterized six times!!. That is a lot for me—then we also got the added bonus of having a cystocospy right then and there in the room where I was having my uro-dynamic testing. From what the guys explained this was a good thing, because if I were to have the cystocospy, it would have to be scheduled and everything which equals more waiting-so we got it done then. The event was quite a show: a camera is driven up the urethra and looks all round the inside of the urethra and bladder. It was pretty read in there which could have something to do with the amount of blood and other stuff which have been cluttering up my urine of late. I had been working all day with Colleen a PRN but all the sudden Dr Myer, the head Dic Doc, of this little universe was summoned, a bearded , youngish, white coated little gnome, fastidious but in a good way. I could tell this guy was smart and if anyone could help me through the euthreo-straights, DR Myer could do the job. DR M., was serious but hopeful in just the right amounts. He did not like the red areas inside the bladder and wanted a biopsy done “soon” does not have to be done today but “soon”, his big eyes magnified by the giant lenses riding his nose bore the importance of his sentence straight into my heart.

The cathing has become easier, smother almost painfree, the doc wrote a scipt for something to settle down spasmodic bladder which I have had for the past week and a half—I tgink I’ll be able to get back to work Monday. Mind you, I still hate cathing but it is getting better…this morning the phone rang and it was Colleen the PRN called ( on a Saturday my mind screamed in the back of my head”. Colleen was calling on a Saturday morning not to worry me but to let me know the pathologist has written a note on the bottom of my cytology report- the Path saw a few things which disturbed him and felt it should be checked out, soon as possible. Then I heard it ‘tick, tick tick…” There is a time bomb out there and it ticking and it just got thrown into my court—now what do I do with it?!!!!

Pass the Bones Please!!

To say today has been weird would be an understatement. I knew the day was gong to be challenging because I was going to meet with one of our primary funders. We used to have four primaries but that was the old days—when there was plenty of money to go round. In the last two years one funder had dropped completely off the scene( hopefully at some point that provider will return but is somewhat doubtful) and the other funder has kept a minimal amount of money trickling in about $7,000.00 which is better then a poke in the eye…kinda.

I don’t even have board meetings any longer –our program is so low on our funders sights that they usually don’t come—one has even said to stop sending them notifications and just minutes of the meetings. So, instead of the board meetings which I used to have quarterly. I now invite each funder in individually, have them take a seat and try to visit with them about their organization and ho Access Utah Network can assist them meet their goals and particularly how and what we, as an organization, can do to have their organization uses us more. So that is what we were doing today—and truth be told a little of hat we were going to ‘hit’ this director with was ‘hey we need a little boost in our economy too. We could use a bit of a funding bump. But when the director got to the meeting he looked pale and ashen—not, a good sign. It seems that yesterday he had gotten a directive from the State Government indicating that his agency was going to be cut another 24%. We have heard rumors that further cuts were coming but we were figuring 3-5% at the most, which we felt would be devastating but 24% we are talking staff, stuff and brick and mortar. This guy had had 24 hours, one day to digest this information And I could tell he had and now was having to take the next step and begin cutting out living tissue in a effort to save over all system but now he is having to cut or try to cut bone because the fat is long gone, and so is most of the muscle an the bone is all that is left. I thought the director was going to breakdown and cry right there and then. Mental Health Association in Utah and my director just looked at each other realizing that was going to come from this event except doing some damage control. So we just let him talk and just listen—sometimes just listening is all one can do and hope what ever is said is not too painful.

So there it is—if this guy has to take the 24% cut, I am sure I am going to get it right between the eyes, both barrels, sayonara, time to start packing the office and get ready to turn out the lights. Ofcourse, no one has really, really discussed the issue yet—the elephant just got to the middle of the room we’re still in the phase of trying not to see it—I mean this afternoon we had an epic staff meeting and the most difficult thing we discussed was how we were going to cover Christmas and Thanksgiving staffing. So the rollercoaster has just left the starting gate again and we have just started the downward ride…all systems stand by…

Stick It !

I think I spoke of this issue a bit earlier about how, after my visit to the doctors a couple of weeks ago, she wrangled a medical good sales man to send me a box of catheters!! So this huge box of catheters have been sitting on the dining room table for a week or so and Dianne finally moved them to the computer-where all my stuff ends up usually. Dianne figured I would never use them, because I said I would never use them but I think my comments were fear reactions of having to deal with more disabilities related issues then I have had deal with for forty some years. I see this as regression to being more dependent and my own belief that because I have not had to deal with these issues I was not having issues even though Dianne and my practioners have said that I am.

I have been “sneaking” up on this fear I have had of self cathing these past couple of weeks by watching self cathing videos on you tube, catheters vendor web sights and staring at the box and my penis come to the realization I was going to take issue in had and cath. Odd as it seems the root canal helped me come to grips with my fears. The root canal was so pain free that maybe I have grown past some of the fears I have harbored for years and with this realization I decided to try cathing , regardless of the pain and what ever and see what the effort yielded. Dianne has been helping me of course because I fear my limited hand function would most certainly contaminate the field and ofcourse Dianne gives me great moral support. We tried at first on Friday morning. The catheter seemed way too long for what I needed but we opened the device up and got it lubricated and inserted.

I was mildly surprised as how well the catheter entered my penis with far less pain or discomfort then I remembered. We plunged the device up the urethra and I was not going hysterical or writhing in pain or spazzing myself out of my wheelchair. We went in pretty deep, or so we thought but nothing; that was it, we pulled the pipe out perplexed. I felt sure this was proof that I indeed was draining my bladed as I should, and I did it and that was that. Dianne felt we had not done something the way we should. She could not believe we had gone in as deep as we had and not tapped the well. I had survived and I was just plain happy to have that behind me.

All day Saturday I considered the event and rehearsed my new mantra, “catheterization can only be good for me” and will help me live a better and longer life. So this morning when I got up. I could sense I had quite bit of urine residual so I took a deep breath and seceded to try again and see where we went. Dianne got the catheter unpackaged and lubricated and I steadied my nerves. This time I took a larger role in the whole process actually doing a lot of the insertion of the catheter in to the penis and boldly pushing further and further the latex free tube. I have to admit the sensation was not all the pleasant but not horrible either and suddenly water began pouring from the end of the catheter. I filled up a bottle and half urine before the flow trickled to a stop. I had drained my bladder for the first time in decades. I was amazed as I pulled the catheter out. I was Ok and shocked I had retained so much fluid.

The doc wants me to do this three times a day—I don’t see this happening, even once a day is better then nothing and that is how it will be one day at a time.