CIDP-2024.3

CIDP (2024) (page 3/4)

(Chronic Inflammatory Demyelinating Polyneuropathy)

July 1/2024

Mounted the cane holder; used some cloth tape to shim the
tube as the holder is for a different brand of rollator.

July 3/2024

Pure Form Physiotherapy for a session.

July 4/2024

Picked up this folding shopping cart from Canadian Tire,
on sale for $49.99.

July 8/2024

Follow up, Surrey Hospital for Outpatient Physiotherapy.
With me doing my home PT, and the limitations from my arthritis,
prosthesis and CIDP fatigue, they say they can't do much more
for me. They also say I am doing better than most neuro
patients.

We agreed no more outpatient physio, unless things change,
then I can re-connect with them.

At this stage of my CIDP revovery, changes, if any, will take
much longer to see.

Noticed this red mark on my foot when going to bed.

July 9/2024

Went to my GP about the red mark. He told me to put Fucidin
cream on it, get bloodwork, get an x-ray and follow up with
the wound clinic (Home Health Care). Oh, and stay off it.

July 10/2024

Pure Form Physiotherapy for a session.

July 11/2024

Lifelabs; diabetes, iron & infection bloodwork.

July 12/2024

Talked to my GP; getting a referral to see a physiatrist.

July 14/2024

The blister.

July 15/2024

My GP called me; the bloodwork came back a-ok.

July 16/2024

Valley Imaging to get an x-ray of the left foot.

July 17/2024

Pure Form Physiotherapy for a session.

Did some toe touches on an aerobic stepper at physio,
which got me thinking (again) about having one at the house.
After searching online, I was looking in the $100 range for a
good one, and most were limited to 4-6" in height, and 10-11"
of tread depth. I took a look on Craigslist, and found this one,
which was a few blocks away and got it for $50.

Brand: The Step, base is 42" x 16", tread is 36" x 14", height
is 4". Spacers are 2" each, for a for a total of 10" of height.

July 19/2024

Called RoadSafetyBC; a letter was sent out yesterday saying
I can go get my drivers license back, with no more testing.

Got a call from my GP; the x-ray didn't show anything bad.

Been a little bummed about the lack of progress over the past
few months, but then realized that in the past three days, I was
walking around the house without the cane, and carrying
things with my free hands. This really snuck up on me but
it was to good to see the improvement from all my hard work.

July 20/2024

Home Health Care; showed up only to be told that they had
a note saying the client cancelled. That is news to me, the
client. Had to re-book for the 29th, making me wait another
week. That makes 3 weeks since seeing my doctor.

I will be phoning HHC on Monday to raise some shit.

The blister.

Trying a new Amazon AFO.

Not staying up in the back.

A few hours later and it has dropped some more. Not cool.

July 21/2024

Went to my place with mom and did some cleaning and laundry
in preparation to move back home. Turns out I over-did-it as I
was sore that nigh and the next day. But, I pushed myself and
found where my boundaries are, which is good

July 22/2024

Talked to HHC. They had nothing to say about cancelling
my Saturday appointment, but were able to get me in this Friday,
instead of next Monday.

Jim Pattison Centre for IVIG, day 1 of 2 (Privigen).

Dad left my lunch in the garage, so a nurse got me this. He
made up for it by having a Jamaican patty for me when I
was done.

Motor Vehicles; got my drivers license back.

July 23/2024

New kicks; I missed my old "hiker" shoes.

Jim Pattison Centre for IVIG, day 2 of 2 (Privigen).

My post IVIG treat; dad normally gets this for me, but today
I went in and got this one myself.

Stopped at the insurance agent on the way home; arrived a
passenger, left a driver.

With me not having a DL, I had dad as the primary driver so
he could be my Uber. But now I have my DL back, so put me
back as the prinary driver, and dad as secondary, (just in case I
need his Uberabilities in the future).

July 24/2024

Pure Form Physiotherapy for a session.

I drove myself to PT today, then back to mom and dad's for
lunch. After that, we packed up all my stuff into the two cars
and headed for my place. I put away the essentials, mom filled
my kitchen with food, then dad went and picked up some pizza
and chicken bites for dinner, my treat. I also enjoyed the beer
that had been sitting in my fridge for at least five years.

It is good to be home, and mom & dad are glad to have me
out of their place. I would not be where I am today without
their help over the past 14 months.

July 25/2024

First morning waking up at home. I was up early, so I puttered
on a few things, had breakfast then relaxed for a bit. I then
went for a drive to get gas (self-serve), a CO2 cartridge
for my SodaStream, then a few things from Dollarama.
Back home at 10:30am where I now rest .

Did some more puttering, the changed a couple burnt out
bulbs on the car. I think I'm done for the day.

July 26/2024

Home Health Care.

July 31/2024

Pure Form Physiotherapy for a session.

August 1/2024

West Coast Retina Consultants. Felt good to go there all on my
own; like the good old days.

August 2/2024

Hodgson; AFO time.

After some discussion, this "off the shelf" AFO should be
best for me. I will try it for the next two weeks.

All done. AFO fitted and ready to test & prosthesis tweaked
(minor foot adjustment and shimmed the upper/inside of
my knee) for a better fit.

The AFO will help correct drop foot, foot supination and
muscle weakness in the leg.

After the first testing, we all saw an improvement in my walking.

The AFO holds my foot up farther than my previous one, which
creates more "heal to toe" action when walking, and with my foot
being held up, that helps engage my leg muscles. Puf that all
together and you get much better walking. Now to practice.

Chilling at home.

My reacher-grabber bit the dust; barely four years of use.

August 3/2024

The AFO.

Random AFO pics.

Token shadow pic.

August 7/2024

Pure Form Physiotherapy for a session.

August 12/2024

Lifelabs; MDS bloodwork.

New ulcer on my big toe.

August 13/2024

Monitoring my big toe.

August 14/2024

Pure Form Physiotherapy for a session.

Monitoring my big toe; been cleaning it and putting iodosorb
on it. There is now an ulcer on the front of the toe.

Just another shadow shot

August 16/2024

Was supposed to see Hodgson for a follow up on my AFO, but
had to cancel and head to the ER; the ulcers on my big toe
got to the point where I can't keep up with them. At this point,
I'm scared to death of infection, so in the ER they took blood,
swapped the blisters, gave me some oral antibiotic and an
injection of antibiotics. I have ten days of oral antibiotic
to take, and await a call from the IV clinic at the hospital to
see when I start my daily IV antibiotics.

August 17/2024

Langley Hospital for IV Antibiotics.

August 18/2024

Langley Hospital for IV Antibiotics; changed bandage.

My toe.

August 19/2024

Jim Pattison Centre for IVIG (Privigen) and antibiotics.

August 20/2024

Jim Pattison Centre for IVIG (Privigen) and antibiotics.

Today's fruity treat; tastes better when you are in the drivers seat.

August 21/2024

Physiotherapy was cancelled so I could go to Langley Hospital
for IV Antibiotics; saw doctor and changed bandage.

August 22/2024

Langley Hospital for IV Antibiotics.

My rollator helping with laundry.

August 23/2024

Langley Hospital for IV Antibiotics.

August 24/2024

Langley Hospital for IV Antibiotics.

August 25/2024

Langley Hospital for IV Antibiotics; changed bandage.

August 26/2024

Langley Hospital for IV Antibiotics.

August 27/2024

Langley Hospital for IV Antibiotics, then down to the lab for
bloodwork.

August 28/2024

Langley Hospital for IV Antibiotics. Saw the doctor and got
the bandage changed.

August 29/2024

Langley Hospital for IV Antibiotics.

August 30/2024

Langley Hospital for IV Antibiotics.

Saw the vascular surgeon that did my pinky-toe amputation.
He said this toe doesn't look that bad, and to continue the
antibiotics for another two weeks. The other option is to cut it off,
so we will try plan A first.

August 31/2024

Langley Hospital for IV Antibiotics.

September 1/2024

Langley Hospital for IV Antibiotics.

September 2/2024

Langley Hospital for IV Antibiotics.

September 3/2024

Langley Hospital for IV Antibiotics and bloodwork.

September 4/2024

Langley Hospital for IV Antibiotics and see doctor.

Had a phone conversation with my blood doctor and the
monitoring for MDS. All my bloodwork has been good, so
he is going to reduce my bloodwork from every two months to
every three months, and as long as things continue as they
have been, we will chat again in a year. That is some good
news that I really needed to hear.

I stopped at Hodgson to return the loaner AFO, and encountered
some putz parked in the disabled parking spot with no placard.
Thanks putz!

September 5/2024

Langley Hospital for IV Antibiotics.

West Coast Retina Consultants.

September 6/2024

Langley Hospital for IV Antibiotics.

Went to mom and dad's for dinner. They are dogsitting my
brothers dog, so I spent some quality time with her.

September 7/2024

Langley Hospital for IV Antibiotics.

Picked up pizza for dinner; used my shopping cart to carry it.

September 8/2024

Langley Hospital for IV Antibiotics. Pictures don't show it,
but the ulcers do appear to be healing, and today the nurse
removed some dead skin, which is a good sign.

September 9/2024

Langley Hospital for IV Antibiotics.

September 10/2024

Langley Hospital; CT scan on left foot (I was in and out in
less than ten minutes), then IV Antibiotics.

Visiting.

September 11/2024

Langley Hospital for IV Antibiotics and bloodwork.

September 12/2024

Langley Hospital for IV Antibiotics and see the doctor.

September 13/2024

Langley Hospital for IV Antibiotics.

September 14/2024

Langley Hospital for IV Antibiotics.

September 15/2024

Langley Hospital for IV Antibiotics.

Home Health Care. The wounds are healing; they put
honey on the top ulcer and changed to a more breathable
bandage.

More visiting.

September 16/2024

Jim Pattison Centre for IVIG (Privigen) and antibiotics;.

September 17/2024

Jim Pattison Centre for IVIG (Privigen) and antibiotics.
Half way through the infusion, my IV started leaking, so
they had to put a new one in.

September 17/2024

Dr Pepper is today's treat flavour.

September 18/2024

Langley Hospital for IV Antibiotics and bloodwork.

September 19/2024

Langley Hospital for IV Antibiotics and see doctor.

Resting my back with my pal.

Home Health Care.

September 20/2024

Langley Hospital for IV Antibiotics and see doctor. The iv
started leaking inside me, so had to start a new one.

September 21/2024

Langley Hospital for IV Antibiotics.

September 22/2024

Home Health Care.

Resting.

Langley Hospital for IV Antibiotics.

September 23/2024

Langley Hospital for IV Antibiotics.

September 24/2024

Home Health Care.

This is becoming a habit.

Langley Hospital for IV Antibiotics.

September 25/2024

Langley Hospital for IV Antibiotics.

September 26/2024

Langley Hospital for IV Antibiotics & bloodwork.

Home Health Care.

September 27/2024

Langley Hospital for IV Antibiotics & see doctor. Doc says things
look good, so no more IV antibiotics, continue with oral
antibiotics, continue with HHC, and reach out to my vascular
surgeon for a follow up.

September 29/2024

Home Health Care.


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Last updated on September 27/2024

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