Food and Weight: An Ongoing Journey

Archive for June 2016


Onward

by Chris Squire
recorded by YES on their Tormato album

 
Contained in everything I do
There’s a love I feel for you
Proclaimed in everything I write
You’re the light, burning brightly

Onward through the night
Onward through the night
Onward through the night of my life

Displayed in all the things I see
There’s a love you show to me
Portrayed in all the things you say
You’re the day leading the way

Onward through the night
Onward through the night
Onward through the night of my life

Onward through the night
Onward through the night
Onward through the night of my life


 

This is the song that is going through my head after what can only be described as a day of being tested at every turn.

This entry is something of an update to the last one, as well as a note on yesterday.

On the 27th, I had a meeting with the heads of PT and Nursing, as well as my social worker. Found out a few things that the hospital hadn’t told me. One of those things was that at the end of my stay here I would not be sent back to the hospital for reassessment, as the hospital had told me, but would be sent home – with home care – for at least a few weeks so that they could make sure the infection is really gone for good. Not fun, and it means that my whole summer will probably be shot dealing with this. As I noted before, however, if it means getting real mobility back, it’s worth it.

I was also told that the reason the home care guy called the roomie and my medical executors is that he needs to talk with the folks who will be my main support system while I am at home. So I need to have them call him back, and soon.

I have been making progress, though. I can just about fully sit up off the left side of the bed, without using my cane to help. Not sure how far I can go on the right side yet, but I will keep working on it. I can also raise the head of the bed to almost vertical, and stay there for a bit before the pain sets in. This is important because I need to be able to stand before I go home, so I need to build those muscles up.

Things have also been coming to a head with a close friend who has been ignoring her own health issues. I spent much of the last two evenings trying to get her to see sense, and I am now leaving it in God’s hands. I love this friend dearly, but I need to take care of me now, so that I am able to care for others when needed.

Wednesday started with it taking almost two and a half hours to get someone to disconnect the IV, and rapidly continued downhill. My glasses frame broke (the roomie is bringing my spares when she comes today); meds were delivered late all through the day; friend who was supposed to bring dinner had neither shown up or called by 8:30 pm, so roomie went to the fast food place across the street for me; had a very rare (for me, anyway) attack of gas and diarrhea, the friend with dinner showed up about 11:45 pm; and – finally – when I picked up my beads for meditation, they broke in my hand. (I was able to recover all but one bead. Roomie is bringing a replacement bead, my needles, and some thread later, so I can fix it, and I’ve ordered a new one online.) This was about ten minutes after I had sent the friend home, so I had to try to find the beads while lying mostly flat. Found all but one, which was pretty good.

I am trying to look at this whole day as a day of being tested, rather than as a day filled with frustrations. It’s not the easiest switch in perception to make, but it is one of the things I am working on as part of my goal to getting back on my path. I may not be able to hold that perception for very long, but at least I am learning to try to make the distinction.

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On June 2nd, I went to the ER for gastroenteritis. Was discharged on June 6th, took the roomie to Randazzo’s for lunch, then we headed home. Tuesday I was fine. Wednesday I had some pain, but no more than a typical sciatica flare. Thursday, June 9th, however, I literally could not get out of bed.

The roomie tried to help, but it just wasn’t happening. Roomie called 911, and warned them that there was no way a gurney could navigate the turn into the foyer and living room. The EMTs got there pretty quickly, but I was in such horrendous, screaming pain that it took the three of them almost half an hour to get me into the stair chair they brought. After that, getting me onto a gurney was relatively easy, and off we went to Mount Sunai – Brooklyn (which used to be Beth Israel – Kings Highway). Spent a couple of hours in the ER, had X-rays and a CT scan and was admitted. My primary care guy came by and gave me the bad news: In addition to the sciatica, I had nerve damage at various spots between about L3 and S1, severe degenerative arthritis in the same area, disks in that area were crumbling and I would need spinal fusion surgery and, to top it all off, there was some inflammation that needed investigation before they could do anything to remedy the situation. My doctor and the infectious disease doctor explained that they needed to do a bone biopsy (nothing to do with cancer – just taking a core sample for analysis), because if the infection had hit bone, treatment would be different.

Sure enough, it had hit bone but was still at a treatable stage. Then I got the worse news…I would have to get four to six weeks of heavy duty IV antibiotics to completely kill the infection. This meant a PICC line would be put into my right arm, and I would be transferred to a nursing home/rehab for the time needed to kill the infection. So I looked through their list, and talked to the ex’s wife (who had experience with a number of them), and submitted my choices. Was turned down by all but my last choice – allegedly because of the cost of my medications. (One of the meds costs $152/dose, and I can’t use the thing it can be swapped with because I’m allergic to it.

The transfer to the rehab was all screwed up. First, I was told on Thursday that I would be discharged on Friday. Half an hour later, I was told that the ambulance woul be there at 6:00, and I should be packed and ready to go. The roomie packed my stuff and we waited…and waited…and waited some more. The ambulance finally arrived at 8:15, they loaded me, the roomie, and my stuff and off we went to the rehab. Got there about 9:15 pm, to find that even though they had said my dinner would be waiting, there was no food for me and the kitchen was now closed.

Then they said they would have to weigh me. Unlike Mount Sinai, which has beds with scales built in, they weigh people by using a Hoyer lift – basically, they put you in a canvas sling, attach the sling to a mechanical lift and haul you off the bed. This was more than problematic, because ¬†the way I was on the lift bent my spine right where all the damage is, so they couldn’t get an accurate weight for me. Then I found ou that though I was supposed to be on a rehab floor, they had put me in with the nursing home patients, including one particularly crazy lady who talked without stopping from the moment she woke up. She was apparently a known problem to the entire staff because if you mentioned her name the staff would roll their eyes.

Then it took me three days to get someone to change the dressing for the PICC line, which was now falling off.

Finally, Monday morning, I was transferred to the rehab floor. The room I am in is far too small to hold two patients, but my roommate here is a pretty nice person, so we are managing. The food here is pretty much inedible, so the roomie and another friend are bringing in food for me.

Then there are the PT folks, who are trying to force me to do things like sit over the edge of the bed, and refuse to understand that I can push myself into a sitting position, but that when the pressure hits my “sit bones” it puts me into screaming pain.

Another annoyance here is that when they need info about me, they don’t ask me, but call the ex, the roomie, and Naomi instead. Of course, my friends tell them to ask me, but it’s just one more annoyance.

Anyway, the upshot is that I will be in the rehab until mid-July, then I get sent back to the hospital for reassessment of the problems and to determine what sort of spinal surgery I will need. After the surgery there will, no doubt, be more rehab, so my summer is pretty much shot to pieces. On the other hand, if this all gets me my mobility back, it will certainly be worth it!


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