AUGUST 1, 2012
Day to go. I woke up feeling a little punky but not giving in to the bed. Everyone noticed my red eye but paid no attention to my complaints that I felt "off." Too bad. I was getting out and nobody was going to stop me. By the time it came for me to leave, I just jumped into the van and left everyone in the dust. I don't recall the trip to my apartment or going up to it or the moving men dropping off my stuff. I was sick with a fever in the very least and didn't know it. By the time I woke up [in my chair] in the hall by my bedroom, it was dark. I couldn't find any lights and the movers had pinned me in the hallway. I couldn't see my chair control and it didn't seem to work anyway.
Mother nature can be a real mother now and then and this was one of those times. I had to go. I mean, really bad. BUT, I couldn't get to the bathroom so I did what I had to do. I think there is nothing so demeaning as to have to pee uncontrollably wherever you are; but that's what I had to do! So, there I was ... doing what I had to do on a brand new chair.
Daylight inevitably dawns. By that time, I discovered that I was wearing my cellphone all along. I could have called for help much sooner. My scheduled aides had tried to get in but couldn't access the keys. By then, it was too late. Sooooo, I called 9-1-1. The fire department arrived and (goody, goody) the door was unlocked all the time. (I had tried to get up from my chair earlier but was not successful in reaching the door with my new Rollator walker. I almost fell. When I tried to get back in my chair I sort of missed the full seat and remained hanging on for quite a while.) When they came in they recognized me due to the previous time I had tried to live on my own. They told me that I belonged in a facility ... assisted living in the very least. I sure didn't take to that suggestion very readily. I was asked just what I wanted them to do and all I wanted was to be placed firmly back on my chair. Nothing doing!! They wanted to take me somewhere ... preferably back to a "home." They even threatened to call the police who could make me go to the ER in the very least. Well, OK, take me away. Smelling like an old wino who has slept and woke up in his own "juices." As an aside to this, I found that in situations like mine where I was taken somewhere against my will, the Fire Dept. informs some sort of county agency that protects adults interests and they wanted to come in and investigate my situation. Nothing was done after that since they thought there was no real abuse and I was in full possession of my faculties.
When I reached the ER, you wouldn't believe the speed and number of people in attendance. They said I had a 105 degree fever and had gone "septic" with a massive UTI (urinary tract infection). Whooo weeeee! Was I ever in trouble! Back in the hospital again! I don't recall how many days it was til I felt more like myself again. I do know that on the second day, an aide found a quarter-size blister on the bottom of my right foot! Ooops. It soon grew to the size of a small orange. You know the problem with that don't you? I have been battling with this type of thing from the onset of my woes. (I later discovered this was a typical problem with Charcot Foot. The other chronic problem is breaking foot bones with this syndrome. And that is what took my left foot.) Scared? Yup!
Doctors called in the infectios disease DR who took over my care. The docs had to put in a PICC line to keep the antibiotics going but they really wanted to put in a port because they were going to send me home on heavy antibiotics. It was good that they wanted a port because I blew the PICC line while I was on the table for the port!
It took him three weeks to clear it up and after that, it was about 2-3 weeks longer that I was in the hospital. When I went home, it was with a clean foot.
At some point I can't totally recall, I developed another blister on the same darned foot! It was actually at this stage that I found out that it was a typical problem with the Charcot.) Will I ever get free of this threat to life and limb? From that time on (sometime in October 2012), I have battled this devil. Can anyone see that it is this that seems to be dragging me under in my attitude? Do you understand that I am getting sick and tired of the battle? I've already told them that, if the foot doesn't heal, I am not going to allow them to amputate. In all honesty, I am not prone to living as a double amputee. This is it. IT being the final straw. I cannot even conceive of going through all this a second time. More pain, more surgery, more rehab and most awfully, more "homes!" I just can't seem to set the right therapeutic level of cooperating with the wound center to see the healing take place. I know I must avoid too much pressure on the side/bottom of the foot but I also have to do some walking. Like to go from my chair to the toilet and back, from my bed to the toilet and back. You know ... just some very basic needs in life!
Well, that's the current health status for now. But that's not the only area of my life that is different now. I had been assigned aides for only 1 to 1-1/2 hours in the a.m. and maybe one hour in the evening. They weren't the most dedicated agency to come along. Soon they left some shifts open with nobody attending to me. This happened more and more til I just said enough! I told my case manager I wanted to fire them. No debates about it. My aides now come from a replacement agency that seems to have it all "in place." Now I get 3 hours in the a.m. and 3 hours in the p.m. No stinky 1 to 1-1/2 hours anymore.
During this time period, I also had problems with my chair. I had to call the fire department twice because my chair went "out." Anybody ever experience blowing motors to these things? They don't go anywhere. And I was caught in the middle of the doorway between my bedroom and bathroom. On top of that, nobody could get the override switches to turn inward so that the chair could be shoved manually. I could go nowhere on my own! And here's where I was forced to spend three weeks in a manual chair with two arthritic hands and wrists, one torn rotator cuff and arthritis in the other shoulder. Carpet does not go well with wheelchairs. And the pain I was in ..... indescribable!! My case manager at the time barely increased my aide hours because I couldn't get around my own apartment let alone to the Wound Clinic. Torture. I had to finally nag my case worker to call the chair people before they finally came to make repairs.
Well, once the repairs were made, more and more things went wrong with my expensive little toy! Arms need adjusting, the other motor burned out (YUP!) and constant little adjustments had to be made because of previous inept adjustments. Many of the adjustments made it impossible for me to take the county bus because I couldn't maneuver this much larger chair. I'm still afraid of taking the bus.
I can only describe the pain when my second motor went as pure hell on earth. Another 3-4 weeks of torture. Another round of missed wound clinic appointments. I just seemed to have attracted the worst kind of luck!!
This, I think is a good spot to end this blog. There is more, but not now!