Good News

Good News

The good news is that my knee is being done on May 2^nd…..I am ready this time both mentally and physically.  I saw the surgeon on Tuesday, April 10^th and he said it would 5-6 weeks before I was scheduled and then I got the phone call that it was May 2^nd and they will call me on Tuesday, May 1^st to tell me what time I have to be at the hospital.

The other good news is that I’m going to Occupational Therapy twice a week. Scheduling gets a little tricky, now that I have the surgery scheduled, I understand that after surgery I’m going back to Parkwood for rehab. So now I am an outpatient seeing the outpatient OT and after surgery I will be an inpatient and will be seeing the inpatient physios and OT’s……I think! 

On Tuesday, April 24^th I am going back to Toronto Western to see the surgeon.  First time I have seen him since he told me to take my neck brace off in October.

It is a little bit frustrating for me sitting in the bug while Darcy struggles to get the wheelchair in the bug and hmmmmmm, I didn’t know she had such a ‘potty mouth’.  To fix that we have traded the truck……sob, sob…..for a boring white Toyota Matrix.  Darcy has put the wheelchair in the Matrix and it is much easier for her to do it.WHITE…….hmmmmmm

Whew….people ask me what I do all day long. I am busy from the time I get up ‘til I go to bed.  I have a shower every morning at 8 am….probably too much information but I am telling you anyway.  For example, this week Monday I went to have my INR checked at the hospital and then to the optometrist for new glasses.  You have to remember that it takes about 20 minutes to get me and the wheelchair into the car and another 20 to get out.  So on Monday, for those two appointments there’s about an hour and a half loading and unloading me and the chair.  The last unloading is waaaaaaaay slower than the first loading.  Tuesday I had an appointment at Parkwood with Occupational Therapy at 1 pm for an assessment to get into the out-patient program but as mentioned previously, I am going to be an in-patient in a week and a half.  

Wednesday I had a doctor’s appointment.  Thursday I went to OT at Parkwood again for an appointment I didn’t have….we were a week early and then to University Hospital to pick up the disinfecting sponges that I must use in the shower the night before surgery and on my left leg the day of the surgery.  Friday (today) Grandpa and the Sarge(see picture below) came over at 10 to stand me up and the physiotherapist came at 11 and worked my knee.  It’s moving quite well she says.

Sarge, me, Grandpa

The recumbent has arrived and Grandpa and the Sarge put it together for me which was very interesting with me watching but it’s good that Bob wanted to read the instructions while the Sarge did the work.  The big question was whether I could get on or off the bike from my wheelchair.  We tried it once and it was very simple using my slider board from the wheelchair to the bike.  We had to adjust the seat to get the right distance from the pedals but there was a problem.  The cranks on the recumbent were too long, they are 165 mm and bent even my good knee too far so there was no way the bad knee was going to be able to pedal.  I had an exerciser that had short 100 mm cranks and a friend came over and put the 100 mm cranks on the recumbent.  The next day I got on the bike and pedaled for half an hour and rode 5.9 k, burned 65 calories, an average cadence of 42, and an average of 18 watts.  So the machine does give me lots of data that I can play with……..yeehaw. So far I have 14.2 k on the bike.The plan is to ride at least a half an hour a day and start building my left leg up as much as possible before the surgery on May 2^nd.  It won’t be a lot but every little bit helps.

My new bike

I am still getting counseling and a psychiatrist and a psychologist were here to talk to me last Tuesday.  That was great timing because I saw the surgeon in the morning and the psychologist and the psychiatrist in the afternoon so I was able to tell them that I was going to have knee surgery which was an issue for me in the past.

More good news, the psychiatrist lowered some of my medications from 12.5 mg to 10 mg for 30 days and then it goes to 7.5 and then to 5 and then very slowly down to zero which means that it may take up to 6 months to completely get off this one medication.  I hope the others are a little faster.

My next blog will be telling you about the knee surgery and how it went.  What I know now is that I will be going back to Parkwood for rehab.  I know the staples stay in for 12 days.   I don’t know how much rehab I will be doing with the staples still in.   We shall see…….

Thanks for listening.

Being Home

March 23 to April 1st

Being home has a whole set of new challenges. The care from CCAC and from the Red Cross who provide the service has been excellent. The issue of catheter changing has become a non-issue. Darcy changes the catheter and the Supervisor will train the PSW’s individually. I do understand the policy that a PSW is only licensed to do certain tasks and must be trained by a nurse on each patient. The PSW’s in the hospital do a lot less than the Red Cross PSW’s as it is probably a union issue rather than a licensing/liability issue in my opinion.

The challenges of being at home can be more frustrating than the challenges in the hospital. When there was a health issue in  the hospital it would be dealt with almost immediately as a nurse was a call bell away and a doctor was at most a day or two away. Here a nurse is at least a day or two away and a doctor is weeks away, of course there is always telehelp andemerge which could be hours waiting.

Here’s another share everything story. If you don’t want to read about BM’s etc. skip this paragraph.... Constipation has become a bit of a problem and bad enough that I couldn’t have a BM last Sunday night and Darcy had to use her finger to dig some stool out. Then I made a big mistake and read on the Internet constipation vs. impaction and lazy bowel syndrome in people on laxatives and pain meds. Sunday night Darcy called the Telehelp to get some information. Now there was a lot to worry about, with info from Telehelp and the Internet I was sure that I’d need surgery to remove the blockage. All day Monday I was anxious and grumpy thinking about impaction and the side effects and treatments. What a relief on Monday when everything came out all right and Tuesday night was even better.

I called a friend that I met at Parkwood who broke his back when his quad flipped over backwards and landed on top of him. When I heard his problems mine seemed to fade away. He has to insert a catheter about every 4 hours. I am fortunate in that my bladder functions and I have a minute or two warning and I can stop and start the flow. My bladder is just lazy and I have to retrain it and if and that is IF I pay attention I can make it to the washroom in time. I wear a leg bag when I go out but around the house I use a urinal. I’ve had a couple, well a few accidents and the washing machine is getting a workout. My friend is also having bowel issues and we never imagined that the focus of our lives with a spinal cord injury would be BM’s and urinating.

Hopefully my lazy bowel will be trained easily when I get off the pain meds. I have reduced my pain meds from 15 mg to 9 mg and hope to be completely off in the next 3 to 4 weeks. Once off I’ll start working on the laxative, bowel irritants, stool softeners and suppositories. Better get some medical advice on that as they say, “He who is his own physician has a fool for a patient!”

How am I feeling? Well….it’s still great to be home! I think Darcy is much better looking after me here rather than driving back and forth to London.She does need time away and friends are giving her a break. I am going out for coffee at least twice a week. Oops this supposed to be how I feel? I get a little frustrated because I think about things to do then, realize there is no way to do it. I am still seeing the psychologist at Parkwood every couple of weeks. Another frustration is my physiotherapy as I won’t be getting in for another 2 to 3 weeks. I wonder how much I am losing doing my own weight program. A physio does comes once a week for an hour and works my left arm and left leg. It’s good but not enough. As far as pain goes the muscle spasms in my ribs are my biggest problem and the tone and spasms in the rest of my body are exacerbated by the BM and urinating or lack of.  I really need to lay on my stomach but I don’t have a face pillow. My hips and lower back are getting very tight as they are at 90 degrees most of the time and I need more stretching than I can do here. I have ordered a face pillow and it should be here soon and then my buddies will be able to flip me over on the living room carpet. I ordered a recumbent stationary trainer which will be here on April 11^th. My friends come and stand me up and I was standing for 3, 4 and 5 minutes last week.

I attended a dinner party on Saturday night and missed the 8:00 o’clock bowel care. It was very interesting being at a party with friends. Normally at a party I’d have a couple, ok a few, glasses of wine and mingle. In a wheelchair it was impossible to mingle and they had to come and talk. The party was great and I enjoyed it thoroughly…...even without a glass or two of cab.

Thanks for listening…..