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    3rd July 2007

    Frustration…

    I haven’t written much here for a while, and I said that it was because I’ve been busy with work and whatnot… and I was busy with work and everything else, but for me being busy doesn’t always mean that there’s that much to do as much as it means that I’m going at it all in a way that neither fully utilizes the time for work nor fully utilizes the time available for play. I’m not talking about my performance grading tests – each day while I was at Measured Progress I was a good employee (especially after I was promoted to a more active position so I couldn’t ever space out anymore). I’m talking about the different “business items” I was trying to take care of at home – things like: Looking for another job (long or short term); going to weddings and planning to go to other weddings; figuring out my medical insurance/medicare situation (which I now know is impossible); pay some bills; get some doctor appointments in; etc, etc.

    I simply don’t get that stuff done in a timely fashion. I go to work on something and end up reading something that I’m not interested in/making no progress because I’m working at it in the wrong way/daydreaming – and then I end up with less time to do the recreational activities that I enjoy. But instead of getting to do those activitites that I enjoy – like hanging out with friends, handcycling, making music, reading, sleeping (is sleeping a rec activity?) – I end up wasting time just like when I trying to get those “business items” done.

    It’s very frustrating.

    Like trying to sleep on a hot and humid night* when you’re sheets are sticking to you and you wake up every few minutes realizing how wet your pillow/sheets are. Like being wide awake at 1 am and wishing you were asleep but knowing that it will be hours before your mind/body settles down. Like waking up at 1 am and being wide awake and wet from the heat and humidity.
    *It’s been unusually humid in Colorado this last week – and above 90 degrees 12 out of the last 17 days (above 80 the other days).

    Like trying to break an old and bad habit or beat Solitaire. Like listening to a friend who complains about the same things every time you get together – and you can tell him/her what he/she needs to do but you can’t make him/her do it (yeah, that is a multiple person metaphor for a single person situation).

    Like being out of work and knowing that there is a need for money. Or even more like being out of work and feeling like there isn’t much use for the skills and experiences you bring to the table.

    Folks, I have been frustrated in a number of ways lately, and it’s starting to wear me a little thin in some places. I’m going to describe them to you at the risk of sounding like a whiner.

    As much as I love school, I’m a little tired of it and so I have looked around a little for more long term jobs. I’m not sure what exactly I’m looking for, but mostly I’ve been looking for teaching jobs because I’m interested in finding out if teaching is something I really want to do for many years. (It’s why I’m in grad school, I think).

    So when a friend passed my information on to a college that needed someone to teach a few Greek classes for a semester or a year, I was ecstatic. When I actually heard from a professor from the school, I was way out of my mind. So I sent some info and expressed my great interest – and imagine my delight when they replied expressing mutual interest.

    I was a little pumped up, even if the position didn’t promise to be at all lucrative. So the dissappointment was also fairly great when I was told that they needed to find someone who could also teach a few Latin classes in the spring when another professor goes on sabbatical.

    The job search is inherently frustrating for all, but added to that in my case are a number of jobs that I would have been able to do pre-spinal-cord-injury that I am now almost automatically disqualified from. All manor of manual labor jobs of course, but also many that require only a bit of “lifting” – like the job taking care of developmentally disabled adults that I worked for two summers past. I can stand, but my position makes it seem like it would be significantly harder to obtain a job that required standing at a desk or something of the like. And I didn’t exactly help myself out by getting a bachelor’s degree in Greek.

    During this same period of time I was also on a rollercoaster regarding a certain physical problem that I have been struggling with over the past couple years. It is not something that I like to talk about at all, but I’m going to do it right now. Many of you know that I have a certain amount of spasticity below my level of injury. In some ways my spasms are useful – I can voluntarily trigger some of them to work with other completely voluntary muscles to help me stand and take some steps (among other things); but in other ways they can be seriously annoying – like how my feet occasionally tighten and shake as I lay here typing on my laptop.

    By far, the most annoying problem that I have with my spasticity is that I have some rather powerful bladder spasms. They happen when my bladder fills to a certain point and they have been the bane of my paraplegic life; a cause of great embarrassment for me. They complicate my life in a whole number of ways that I won’t describe right now, both for the sake of my embarrassment and yours. One thing that I will note is that when my bladder spasms, it often triggers a spasm throughout all of my muscles below my level of injury, resulting in a rigor mortis like state in my legs/lower abs.

    There have been a number of possible solutions suggested to me over the past two and half years. The first was to try various medications, which I did; I maxed most of them out and still didn’t see positive results. The next suggestion was that of a sacral neurectomy, that is, to cut the motor nerve to the bladder, essentially leaving those muscles completely paralyzed (like if my spinal cord injury had resulted in a severed spinal cord and I wouldn’t have had any sensation or motor abilities below the level of injury). I looked around for a doctor that would perform such a procedure, but it seems to be something frequently done in the past but rarely done now.

    I consulted with a doc who was doing a procedure to implant a sort of “pacemaker” for the bladder – an electrical stim pack attached to the bladder nerve with leads that could try to correct/stymy the nerve impulses causing the spasm. This was a fairly “experimental” procedure (read: pricy , not endorsed by the insurace companies, and spotty as far as results went) and having the stim pack implanted would also mean problems with doing MRI’s in the future (which folks with SCI are likely to need at some point). All in all it didn’t seem like a good return for the investment.

    Then I consulted with a doc that was doing botox injections for bladder spasticity and it seemed like a fairly risk free, economical, and promising possibility. Botox works by paralyzing muscles – it makes people look youthful by paralyzing the muscles that cause wrinkling. In the bladder it had done well in helping people with some spasticity to no longer have problems with spasticity. Botox injections are safe and simple. The downsides are that the injections only last for 3-6 months for most people, though in bladder procedures the injections often lasted much longer – and with the need for frequent injections can come a decent cost.

    Still, the cost isn’t that much (the expense is primarily from the botox itself) – and if successful, decreased need for medications/medical supplies can easily offset the cost of the botox. So I decided to go for it.

    I had the injections done during my last week of school. It was an unpleasant but short procedure – not anything close to the worst for me. For the first several days I didn’t notice any difference… But then, bit by bit the spasticity became less – much more controllable. My bladder capacity increased until it was all the way to normal. It was amazing – four weeks of bliss! It’s hard to describe what it meant to me… but to be able to go for a bike ride without having to deal with those spasms; living more boldy and trying things I wouldn’t have previously; to be able to drink aplenty and be happily hydrated instead of secretly maintaining a little dehydration to avoid those spasms… It was glorious.

    But then, just like the spasms went away, they started to come back. My bladder capacity decreased again and I had to return to living much like I did before – a way that has gotten my through two and a half good years. Of course I was frustrated by those spasms before this whole thing, but I dealt with them like I dealt with everything else. I had to.

    Now that I’ve known what it is to live without them, though – I’m not sure I can take going back.

    It
    ……………………is

    ……………………………………………extremely

    ………………………………………………………………………………..frustrating.

    For many of you, this might be more than you want to know – for others, much less than you want to know – but here it is, raw experience in my own raw words. And usually I try to tie in things that I’ve been learning when I write for this long, but right now I’m not going to. It’s not that I haven’t learned anything through this. I have, and I might get to share some of those things at some point.

    But right now I’m tired. It’s now 2:46 am. It’s still hot and my back is wet and the sheets underneath my back are wet and even with the air conditioning on and a fan blowing on me I’m still sweating. I wanted to be asleep 3 hours ago. Of course, I don’t have a job to go to tomorrow morning anyway so it doesn’t matter if I sleep in, but you know what they say: The early bird gets the worm – but if I get up early tomorrow I know I’ll be a pretty tired bird and have trouble getting the worm anyway.

    5 comments

    5 Responses to “Frustration…”

    1. Makeesha says:

      one of the most difficult things about relationships is wanting to help your friends and not being able to, wanting to say something meaningful and only sounding trite and superficial. I can’t imagine how frustrated you must be and I pray that God brings either healing or a solution.

    2. josh leo says:

      I often find myself not being motivated to stick to tasks. I think i am busy but find myself completing only a small amount of tasks. Figuring out what you want to do can be a big pain in the butt, and when you do know, finding a job that actually pays is another difficult task. Patience and time is the solution I suppose. but that is not always easy. I guess the only things we can do is to just have a good time today while preparing for the future… investing in both areas…

      p.s. sorry i couldn’t hang out when you were in town a while back, next time you come to GR let me know ahead of time. I would love to hang out!

    3. Nannette says:

      I tell you…you should be a writer…you are super smart, and super funny and most importantly a Man of God…you are amazing.

      I’m 36 and was hurt when I was 16…i’m c5 incomplete. I have Brown Sequard..which is basically my feeling is great on my left side…which has the paralysis and movement is almost normal on my right side..but feeling stinks. Kind of like a stroke. Anyway I say all this because “I feel your pain” …even though i walk (not gracefully)it took about 3years to be able to let the chair go…i had and still have bladder issues, i won’t go into detail…because you think male bladder issues are bad…women have it worse.

      I don’t have any additional suggestions for you regarding this, but i want to encourage you, i found that it got better through the years, i feel like my body adapted and my brain became much more attuned to my bladder…not perfect…but manageable (MOST of the time) I don’t know how much muscle control you do have…but exercise the muscles down there that you do have as much as possible.

      My early 20’s were a mess…very depressing, and frustrating, and i didn’t know God…so, very empty.
      It gets better!! I let God in…and he changed me, changed my heart. I encourage you to keep fighting and remember that His mercies are new every day…that He supplies us with our DAILY bread…one day at a time.

      Many blessings on your journey!!

    4. Daryl says:

      Thanks Nannette, I have to let the frustration out sometimes, but it’s comments like yours that keep me on track and encourage me to keep writing; reminding me both of the blessings that I have and the blessings promised to me – and letting me see some of the struggles of others. And that daily bread one day at a time thing? Man, it’s tough but it’s good, isn’t it?

    5. Nannette says:

      Vent away!! I think its awesome that you can reach out so easily now a days to others & get opinions/feedback/encouragement from total strangers…
      technology is amazing! Sometimes…

      John 10:10
      10The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

      I heard the most amazing message this weekend at church. If you get time…I think it will really connect with you (i know..i don’t know you, but as the holy spirit leads..i follow) got to be weird coming from a total stranger…

      http://northpoint.org/messages
      (message from 7/22)

      In Him,

      Nannette

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    Copyright 2005 by Daryl Holmlund - All rights reserved.