Sept 30 to Oct 13, 2013
Again, no therapy on Monday….grrrr. I just figured out why
my right leg was giving out. Last couple of times I was at the pool there were
no males around to push me through the dressing room so I propel myself with my
right foot forgetting that it stresses the hamstring. That’s why the right leg
was giving out when I was walking, the hamstring was fried. Here I was thinking my good leg was getting
weaker. Went to the pool and had another good session.
Got a call on Tuesday morning that physio was canceled as
there was too many staff away sick. That will be 7 days without therapy. Went
to the pool again and all the regulars were wondering what I was doing there on
a Tuesday. Going to give the bike a rest for a week just to see if that relieves
some of the muscle tone which may improve my walking…we’ll see!
As mentioned Shannon wants me to stand and do things with my
hands. I started by standing at the sink and rinsing the dishes. I can see why
she wants me to do it. When I am working with my hands, my brain has to keep my
balance without me actually thinking about it. It is interesting as I can feel
the muscles in my legs contracting and letting go to keep me balanced. It is similar to standing with your eyes shut.
Here’s a picture of me standing brushing my teeth… see no hands...note the bum
is out just a bit.
Wednesday it was off to the pool. Yonna was going to take me
but she was coming down with a cold and didn’t want to give it to me. Darcy
took me and we had the usual workout for about an hour. Jeannie was on for a
massage at 2. She worked on my back and left leg. Jeannie does an aggressive
massage and there is a certain amount of pain that goes with it. About ½ after
the massage, my back started hurting and I had nasty bout of dysreflexia. The
blood pressure was getting up to 165/106 and this happened several times. It
just feels horrible. I’ve been having a massage at home for over a year and it has
never bothered me in the past. Just wondering what’s changed? The massage
seemed to have the opposite effect in that it tightened up my back way too much
and then it wouldn’t relax. The dysreflexia got worse and I had several
episodes. To top it off I didn’t have a BM before bed which increased the
chances of dysreflexia. I finally got to sleep after 12 and was up at 6:30. In
the morning, I spent most of the time sitting on the can while the PSW was here.
She said she would come back and dress me after her next client…what a nice
lady…no…she is a very, very nice lady! After dressing, I tried to eat breakfast
and could only eat half the bowl….woops almost but an ‘e’ in bowl!
Due to the chances of having a bowel accident, it was on
with the Depends for the day. Was going to go out for lunch with Sensei ML but
I had to cancel that….big grrrrrr! I have never had my back this tight. It just
won’t relax. Seems when I stretch it gets tighter. Last night when my back
tightens up my butt tightens up and I can’t poop. I haven’t ridden the bike
this week and have just been in the pool 4 times. I have been doing more
kicking in the deep end. Hopefully that isn’t causing the problem. A big catch
22, if I work out I tighten up and get dysreflexia…if I don’t work out, I get
out of shape. I haven’t been to the gym since I started the locomotor program.
Just sitting here typing this on Thursday morning, I am tightening up just
sitting here.
Holy shit! Was Thursday ever a bad day. Had to go to
Parkwood for 1 o’clock. On way up I started feeling strange. We arrived a
little late but when I told them my problem, they took my BP and it was up
around 165/110. They did some stretching but decided it wasn’t a good idea to
do the treadmill with elevated BP. The BP wouldn’t come down so they called
Angie who is the Physiatrist’s nurse. She came over and checked my bladder with
an ultra sound and it had 500 ml in it. Way too much. According to the Dr., if
I were a normal person had that much urine in the bladder it would be very painful.
I had the dreaded catheter put in and drained the bladder…yikes I don’t like
those things. The BP went down a little but then went back up. The Dr. said my
pain will cause an increase in BP. Back to the hemorrhoids, No preparation H so
Ange put some freezing on them. The BP was hanging around High 150’ and 160’s
and even up to the 170’s. They say I have some pain somewhere that is causing
it. The Dr. said it is usually visceral…i.e. intestines, bladders etc….but they
don’t know what it is.
Got home and the BP was up in the 172/110…now that is a
little scary. The PSW comes at 8 o’clock and Darcy put the silver bullet in at
7:30. I was very worried that there wouldn’t be a BM. Well got on the can and
it happened almost right away…yeehaw. Got back into bed and checked the heart
rate…it was starting to drop and got down to 126/80.
Getting ready to watch the hockey game and my legs stared
burning and I had to get up and go for a spin in my chair. Don’t know why that
helps It was 10:30. I asked Darcy to change the flannel sheet to a cotton one.
Then got into the chair and went out into the garage…and back in and started
writing this. Should go to bed as we are off to Hamilton in the morning to see
the urologist. Perhaps he can figure out what is hurting down there. Oh yes,
when Ange put the catheter in she said the sphincter muscle was very tight and
that’s why I couldn’t pee on my own. I just peed now, that is another… yeehaw.
Short lived relief as after my trip to the garage my BP was up in the 150’s/110
again.
On Friday morning my BP was up in the high 150’s again and
not feeling good at all. Couldn’t eat breakfast. Muscles were so tight over my
stomach, I just couldn’t put any food down.
Got into the car and headed off to Hamilton. It was a little rough but
we made it. My family Dr. had upped my Flomax to .8 mg/day and the Urologist
agreed that an increase may help me peeing. I see him again in 6 weeks to see
if the Flomax is working and if not he’ll put me on something else. At the
hospital, I peed but only 250 ml which means the bladder still has lots of pee
left in it. For a few minutes, the pain seemed to subside and I was able to
move around easier, the back and tummy muscles relaxed noticeably. The good
news at the urologist was my PSA was down to 1.76, down from 4.5 when I had the
prostate infection.
On the way home we drove through Brantford and past the
trails at the bridge over the Grand and past the trail that I took on Aug
20…that didn’t bother me but I started thinking that I will never be able to
ride them again and that was a little depressing. I then started thinking, what
a great time it was riding on the trail and yup that started me feeling better.
I guess the moral of the story is never
look back, you can’t repeat the past…just keep moving forward….cherish the
memory.
Went to see my family Doc about my dysreflexia. He adjusted
some of my meds. Upped my gavapentin and gave me some other drugs to help
alleviate anxiety when I have a high blood pressure attack. This has to be the
worst pain day I have had. I have to fart, but can’t and there is a build-up of
gas but my intestine is so tight can’t get it out and my ureter is so tight I
can only pee 100 ml at a time. Last time I tried there was a lot of pain when
the sphincter tried to open and the pee dribbled out. Oh great, just had a pee
and it is full of blood and it is very painful and I only peed about 50 ml. Guess
perhaps a trip to the hospital to get an ultra sound on the bladder just to see
how much is really in there. Now I have the urge to pee about every 10 minutes
and all that comes out is about 10 ml of blood. Getting a little concerned.
At 10 o’clock on Friday night we went to the hospital
because the blood wasn’t stopping and my blood pressure was bouncing all over
the place. One reading was 192/110 and with bloody urine it was time to go. At
the hospital, they got the ultra sound ‘pee detecting unit’ but according to
the machine, I had no bladder. I did have a pee of about 200 ml and it was the
first time there was more urine than blood, a good thing. They found another
‘pee detecting unit’ and a new nurse and she did find my bladder (a relief to
know that I have one…loll!) and there was 108 ml left in it, which is good. However,
before we left, the Emerge Dr came in and gave me a prescription for CIPRIL, an
antibiotic for my bladder infection.
What...a bladder infection??? That explains all the muscle tone which
causes the dysreflexia that causes the heart rate to go up which causes me to
feel crappy and it makes me whine a lot. I didn’t have any symptoms no cloudy
urine, no real burning, no smelly urine. I’ve probably had it for a while which
explains some of the walking problems on the treadmill. Took a Zopiclcone to get to sleep and slept
from 1:00 to 6:30 when the PSW arrived.
Saturday, we were supposed to be attending Laura and Jeff’s
wedding and reception. I feel very bad missing the wedding as I have watched
Laura grow from a little white belt kid to a lovely woman and a Black Belt.
Sorry, I won’t be there on her special day! But Sensei Bill, her Dad said he’d
save me a bottle of wine so not all is lost.
Saturday was a rest day, in the chair writing the blog and in
bed watching TV. The muscle tone is bad and my trunk is tight, legs and the hamstring
on the right leg almost feels like it is cramping. Even the arms are tight and
feel very heavy to move. Took the antibiotic. Just hope the bugs are
susceptible to CIPRIL. The lab at the hospital will type the bacteria to see what
it is and what antibiotics will kill it.
It is too early to tell if the anti-b is working, although
my legs don’t feel quite as tight. Upper body is still tight. Took a Zopiclone
again and slept right through ‘til 4:45.
Sunday was uneventful. Two days of anti-B’s haven’t noticed
a lot of change. Still blood in the urine and I have to pee a lot and still
only 25 to 50 ml each time. It still is very painful to pee.
Monday morning, still lots of blood, still painful, still
only 25 to 50 ml, still frequently with a lot of urgency and only dribbles.
Even with the painful pees the blood pressure is staying down. I don’t get it.
Tuesday morning, woke up tight but there’s hardly any blood
in the urine but it is still painful to pee and gets shut off after about 50
ml. Dr. appointment at 1:00. I was feeling shitty but my BP was not up. They
really had no explanation of what was happening so they gave me more drugs…
MORE DRUGS!!! Just what I need. Tsanidine is a drug for muscle tone but it
makes you tired. I start with ½ tablet for 2 days and increase to a full tablet
and then if I am not falling asleep they will increase to I ½ tabs.
Then it was off to physio at 2:30, I was so tight there was
no treadmill. Barry gave me the best stretch that I have ever had…and that is
ever had. He even got my tone down to something reasonable. My stomach muscles
were actually soft and relaxed. He started by putting a half roll at my lower
back and laid me over it. He then put 4 soft 3 inch balls under my neck, and
under each shoulder blade. While I was in this position he stretched my legs
and the students stretched my arms. He then removed the half roll as another patient
needed it and he put me on 4 more balls. I was actually lying on 8 balls. He
got me up into sitting position and pushed my trunk forward which stretched out
my back. Felt good.
I think I have figured out part of my peeing problem. Now
remember this is Doctor Steen speaking and he has been wrong before. My Flowmax
was doubled to 0.8 mg per day. It has the effect of opening the bladder at a
much lower pressure, therefore it stands to reason that I would be peeing less
volume and more often if the bladder voids with less in it. That is why my BP
hasn’t been going up and no dysreflexia because my bladder is empty and not
getting overfull... Does that sound reasonable?
Off to the pool for the first time in a while. My midsection
and back are tight but we’ll see if the pool helps relax them. The water felt
good and Darcy worked on my arms and legs. She put 3 super dense noodles under
the small of my back and helps to keep lying flat. I have a float around my
chest and one of those air filled travel collars around my neck that keeps my
head up.
Yikes…Wednesday night was a very tough time. I had no BM, as
my butt was too tight to poop and that always causes me grief. This may be too
much info for some but here goes. When I don’t have a BM, the suppository
doesn’t get ‘flushed’ out so some remains and starts to burn. That burn causes muscle tone, you know the
drill, it makes everything tingle, neck tight and the most aggravating is my
nose plugging up for hours. This may explain some of it but not all of it. Darcy
got me out of bed at 11:30 and I stayed up in my chair for an hour…that seemed
to help, unfortunately watching my Has lose to Calgary…didn’t help! The strange thing is, although I was feeling
like crap my blood pressure was low at 119/74...what’s that all about?
Went to therapy on Thursday. They worked me on the table for ¾ of an hour
then got me on the treadmill. Shannon didn’t think I was that tight and my
walking wasn’t all that bad. I felt ok but my nose really plugged up on the way
home. The nose stayed plugged until 8 o’clock when I had a pee. Did you get
that, when I pee my nose unplugs. Is my nose connected to my bladder somehow????
I was tight all night. Got up Friday and I was still tight but feeling better.
I think the anti-b’s are working on the UTI.
Friday got to go in the pool with Darcy. Felt very good. Got
some good stretching done and kicking in the deep end. Starting to feel better.
At the pool, I met someone that I went to high school with. He spent his life
in Connecticut and is now back home…I would never have recognized him.
Did the Karate class today and ran the class, thanks to
Sensei John for letting me take the class. A bit of the problem is the fact
that I am not doing the exercise so I don’t know how tired they are getting. It
is hard verbalizing what I want done rather than demonstrating. Made it through
and my voice held out for the whole hour. Got home and did 6 k outside on the
trike. The shorter cranks helped as there was a lot less knee pain. Strange
that the crank is 3 mm shorter than the other set and it makes that much
difference.
Well Sunday was a real pain. Darcy took me to the pool and
it was almost empty. For some reason my
lower bowel tightened up and I can’t fart. The gas builds up and causes more
pain and makes the bowel tighter. The BP is up to 148/95. Just wait until it
loosens up. Darcy thinks it is from riding the trike too far. She wanted me to
do 1 lap but we did 2. I felt good at the end of the ride. I sit here typing this on Sunday night, my
right leg is tightening up and my hamstring is in a knot, my arms feel tight
sand everything feels heavy to move and the whole body is tingling.
Managed to have a BM with a lot of help from Darcy…’nough
said! We decided to stop the nabalone, a muscle relaxant which we didn’t think was doing
anything…maybe it was! We’ll start it again and see what happens.
How Am I Feeling?
This dysreflexia has got me worried a bit. My BP going up to
the 160’s and 170's and the diastolic going up over 110 to 120 can't be that
good. The Dr. said it is not in the stroke range. It’s a real bummer if I can’t
exercise for fear of getting Dysreflexia. A bummer that last week went so well
and now completely the opposite for these 2 weeks. Guess if I was from Great
Briton, I’d have said a ‘fortnight’ instead of ‘2 weeks’. Is that correct
Sensei Calum?
What the hell is going on??? They have said I haven’t
stopped changing…I thought the changes would be for the better…not for the
worse. Or maybe it is just a short term
thing, and it will get better. Since I can’t feel some of the pain for example,
when my bladder is overfull, even though I don’t perceive it as pain my brain
still can get the inputs and it does its thing such as high BP, stuffy nose,
tingling, muscle tone and anxiety.
When I was doing weights in the morning, swimming at noon
and bike ride in the afternoon, I never felt this bad. I haven’t been on the
treadmill for a week, haven’t ridden the bike or lifted weights. Couldn’t
figure out what was happening. Perhaps by the end of these two weeks it will be
all gone. I have this very bad habit of over reacting and thinking I will be
tight like this all the time now…I don’t take into consideration that it will
get better. Seems bladder infections mess up a lot of things and I need to stay
calm…they will go away!
Called my quadriplegic friend, Etienne. He rode Darcy's trike on a Wednesday and went to Grand Rapids the following Wednesday and
bought a trike and he sounded very happy with it. He also got a set of rollers and he'll be able to ride it in the house all winter long....aaaannnndddd...we will now be able to race…
Thanks for listening….
