Friday, April 11, 2014

Page 17 - A World Unknown


          Coming home was an experience… Someone at Shepherd who used to be a patient but was now a volunteer patient supporter made the comment to my brother "going home you will feel like a tsunami hit". He could not have been more accurate. We thought we knew how to handle everything and indeed we had good teachers and good instructions, but that is not all one needs. There is no teacher like experience. After the hurdle of our first evening home came the hurdle of adjustments for day to day living.

          At first our tasks seemed simple enough and we need only change one aspect of our day. Without the gory details I will only say this, we all have to go and my time was night at Shepherd… We wanted it to be morning, not a easy switch. After three weeks we finally managed to do what we wanted. I needed to gain weight so we indulged quite a bit and neighbors helped, friends held, local bakeries helped, ha ha. But one thing we were not prepared for was on only our third night I wound up in the ER! This would be part of the tsunami that was discussed. It was a bladder/catheter issue that we just couldn’t fix at home and of course it was 3 AM. I have to say the EMTs were nice and who exactly how to treat me and my condition, as were the hospital staff.

          Another element of being home was managing all of the things they came so easy in a well-run facility. We had everything we needed, hospital bed, Hoyer lift, the device needed to lift me from one area to another. But using a Hoyer lift at home was entirely different than it had been with the proper staff surrounding us and coaching us. And even doing it on our own at Shepherd seems simple because we were “safe”. It took us some getting used to but fortunately we ever had what we learned to be called “a floor transfer”… I’ll leave that to the imagination but I’m sure the meaning is obvious.

          I also needed to find therapy again and this was a challenge. We had home support through our local “visiting nurses Association” which also provided an element of therapy. But this was not therapy that was anywhere near on a par with therapy for spinal cord injury recovery. These were people used to working with knee replacements, hip replacement’s at stroke patients. I live in a community that is populated mostly by elderly residents or summer half-year residence who are also mostly elderly and here for surgeries. Don’t get me wrong there’s a population of younger people like myself and families. But these therapists I received in the home barely what to do with me. It was a while before I found a place to go as an outpatient. Finally there was some sort of light at the end of the therapy tunnel.

Wednesday, February 26, 2014

Page 16 - Looking Forward A Few Steps

          When last I posted I was discussing Shepherd and my journey there. I want to wind this down more quickly and say that it was intense and educational and exceedingly memorable. I received a haircut and a proper hair wash, my neck brace came off and with much struggle my trech-tube was removed only days before I left for good. The entire experience was supposed to prepare us for coming home. During my time there I found that I could move a little bit in my left shoulder and slightly in my left bicep. That in itself didn’t prepare me, or any of us for coming home.

          Coming home from Shepherd was a long journey in a rented van in a wheelchair that was way too big for me, and manual at that. We arrived home somewhere before midnight to our first catastrophe. Without going into detail we had missed our window for certain activities that I do every day and had to deal with the mess. On a good note, my cat was happy to see me albeit confused.

          We finally made it to bed probably somewhere in the wee hours. From then on it was a struggle to try to manage my care with family time in between. My “bowel program” became our nemesis until we could get it switch to a morning hour that was more suitable for everyone. This took weeks. It wasn’t fun but we got through it thanks to my family who obviously love me. To this day I don’t know if the situation were reversed how I would handle it. I know I would handle it, of course I would… But how would I ever know if I’d have the courage. I guess that’s why we are put in the situations we are put in. It’s all about what we can handle and we have the courage for.

Thursday, February 20, 2014

Not so Brief Intermission


So after this longer than intended delay for which I do apologize, I've decided to speed through a few things to catch you up to date and make this blog into a more current read. I've had some pain and some conflict with appointments\busier weeks so I just haven't been able to get on my computer much. When I'm on my computer I'm fielding emails and trying to maintain connections. This blog has taken a back burner because I burn out before I have time to set up the next page. This little blurb is intended to bridge the gap and let folks know I have not abandoned ship and I am still intending to keep things rolling along this ocean of unpredictable tides and storms of what is a spinal cord injury. Back soon was another real "page" :-)