Getting back on the saddle. (Actually, just walking again is great.) – A new life with CIDP

Chapter Two:

Well I got somewhat better in the hospital.

The treatments (IGIv) (though causing extreme migraines) relieved some symptoms, most of the “tingling and numbness”, the facial paralysis (much like Bell’s Palsy), my breathing got back close to normal but this condition saps away most of (if not all) one’s strength. I was left with very little muscle tone. The overworked physiotherapists did their best to accommodate me but I still needed to rebuild those muscles and my endurance. I could walk about fifty metres, could eat and manage things with my hands for brief periods.

But eventually I became a lump taking up a bed that was needed by someone really ill. The hospital had done all they could medically so I was discharged. As the “tingling and numbness” remained in the feet, calves, hands and forearms I needed the assistance of a walker to walk anywhere, canes in the house, and if I wanted to go anywhere a handicapped bus (or the help of friends) to get me there and home.

Daily, I did my exercises, walked as much as I could, worked my hands with therapeutic putty to get some strength there and did breathing exercises to try to get back to my previous levels.

After about two weeks, it all came back… Relapse!

This time it was even more extreme. I’d fall due to the loss of muscle tone and this time I did not have the upper body strength to get myself up.

Back to the hospital where I was told that I would have to be re-admitted. Then told by another doctor that my condition had already been treated and there was nothing they could do. Back home, struggling just to keep my balance and stay upright I managed for another day. Then a fall down the stairs had me back in the hospital where they decided I had to be re-admitted. My body could not hold itself upright. The muscle tone I had been able to build up was gone, and more. I had to be assisted to a wheelchair for any movement.

The doctor came and told me the diagnosis had been revised from GBS to C.I.D.P. and another week of IGIv was prescribed. This time with some acetaminophen and a hydrocortisone iv to try to relieve the massive migraines I had the last time. It was a week of hell stuck in a bed, needing assistance for almost everything. I forced myself to do the little things, eat ad drink, some in bed exercises and that was it. But I was progressing. By the end of the week they had me in some contraption with wheels that came up to my armpits and had pads and handles I could rest on and hold. They got me walking with that. First about twenty metres, the a bit further, and further still. By the end of the second week they told me they had a bed in a convalescent care centre and I’d be discharged.

Long story, shortened. A two month stay here with physio twice daily (and some other activities) got me pretty somewhat back to normal. I’d do extra exercises on the side (especially breathing and hands).

Now back home for a while, I can wash and shave, walk about 300 metres before I get fatigued, do some chores. Can’t drive anymore so any outings are a chore and must be planned a week in advance to get a handicapped bus for us. They do not allow groceries so that must be taxied or we depend on the kindness of friends.

I am told it may be up to two years to see results of the treatments (but the first word of the name of this condition is Chronic, who knows) so I’ll have to do lots of meditations… I always thought I was a patient person. I’ve realized I am not.

Well I have exercises and chores to do, books to read, writing to do, photos to edit, and programming to learn…

I am going to try to not sit about feeling sorry for myself (though I’ll admit I do sometimes). Also, unless there is something to say, I am not going to spend energy and time writing here about it. It is somewhat cathartic but there are better things to do for me to keep my mental health.

There is still a life to live.

Getting back on the saddle. (Actually, just walking again is great.) – A new life with CIDP

Chapter One:

It has been a considerable time since I posted… Couldn’t, as have spent much of the past several months in hospital and convalescent care.

Initially the Emergency doctor told me it was probably the herniated disks in my back that was causing numbness and tingling in my extremities and extreme weakness. He gave me some pain meds and told me to see my family doctor and get an appointment for tests.

The next day I was back in Emergency, my legs would not support my body. I was falling all over and finally could not muster any strength to get myself back up. A more astute doctor realized there was no connection between my back problems and my current symptoms. He mentioned something about someone called Gillian Barray (well that’s what I thought he said) or Lyme Disease. He would have to a Lumbar Puncture (also called a spinal tap) to confirm but since results would take some time to get he wanted to start treatment for this Gillian Barray’s syndrome immediately. (It is actually Guillain-Barré Syndrome he thought I had, more below.)

I agreed to this, I probably would have agreed to just about anything at that point, even though I told him I had never even met this Gillian Barray and knew of no reason why she’d want to give me her disease. For some reason he seemed to get a chuckle out of that statement.

For almost a week I had intravenous tubes stuck in me, oxygen in my nose and a heart monitor attached. Every move was a challenge not to disconnect myself from something or other. Then there were respiratory specialists trying to get me to blow into various devices. It took me a while to figure out why.

I made a vow that when I got better (the doctors were saying six months to two years) I would search the planet to find this Gillian Barray and introduce her to a most painful suffering and slow death. After getting somewhat better and able to some research I found that Gillian Barray was in fact Guillain–Barré, two guys who were already dead! No problem. I would find their graves, bring them back to life and kill them again and again and perhaps again, slowly this time. Yes, you are quite correct, I was pretty angry at this stage (putting it mildly).

Well numbness and tingling, screw you guys Guillain and Barré, it was just this side of paralysis! Feet, legs, groin, hands, arms, and then the muscles associated with the Central Nervous System (diaphragm, mouth and throat, bowels, bladder…). Yeah, I was so bloody concerned about not being able to stand up, I didn’t realize I could barely breathe!  I guess I was lucky, I could breathe (from what I was told many can’t) though only at about 50% of normal.

That’s what happened. I was getting better though. I could breathe normally, get around with a walker or canes, eat properly, read a book, use a computer. So they sent me home.

Of course that’s just the time for a relapse…

Musings of a Night Person

I am a “Night Person”. There, I have admitted to it.

At birth (or perhaps before) that great Timekeeper messed with my Body Clock. My mornings are everyone else’s evenings. Although I do get up (sometimes very early) it is not because I want to, but because of work I had (have) to. Also, there are times that this is the only moment to do a particular thing. To photograph the dawn in a fog, the mushroom in the morning dew, the deer at the back deck and many other things must be done at dawn or early morning. Also it seems to be the social norm (everyone else does it). My Bride is a Morning Person. Up, chipper and cheerful at the crack of dawn, ready and eager for something new and for whatever the day may hold. It is a wonder we have been able to tolerate each other for so many years.

I on other hand can function: breathe, stand, walk, read, write, chop wood, shovel snow and countless other chores one does in the morning. However I do them on auto-pilot. I know how to do these things. I prepare myself and muscle memory takes over. An Automaton until well after the mid-day meal I respond only to the pre-programmed items in my brain. There a lot of things I can do, but to be quite honest little of it is done with any zeal or with a fully conscious mind until well after 15:00 hrs.

It is only then that I begin the waking process. The Automaton Mode begins shut down and I begin the process and become more aware and awake. That is the time I can start doing things I want to be doing and doing them the way I want to do them. The few drams of creative juices I have start flowing, I get ideas for projects (photography, writing) or I start/continue/finish some existing project.

At that time the rest of the world (including the above mentioned Bride) seems to be shutting down closing their shutters and attempting to make it back to the cocoon of the home and bed.

From now until about dawn I am wanting (perhaps needing is a better word) to be doing, well something. All those things done in Automaton Mode I could be doing now and with gusto! With rest of the world around me going to bed I do not feel it is appropriate of me to start up the chain saw, lawn mower or even the sander to sharpen the kitchen knives and axes, or to shovel the stairs/driveway of snow, or even crank up my favourite album or music DVD. Too dark to do photography unless you are working in a darkroom.

We “Night People” (I am hoping there is another one out there!) are restricted in what we can do by the “9 to 5” society we live in. Our only options seem to be to either take up a job were ‘work’ is done at night or to move out of the tight urban environment and into a derelict factory or the countryside. There, at least, our neighbours who are trying to sleep are far enough away not be disturbed by us doing our chores at night.

Often I have wondered about “Why?” there are folks like me. No real answers come to mind. Perhaps it is just in the genes. I suppose back in the day there needed to be a few of the population who were required to guard the cave. Protecting the more vulnerable and the food stores would have been important to the survival of the ‘tribe’.

The best I can not to allow it to bother me. After all I have made it this far managing and coping with being a Night Person, I suppose I can make it another hundred and sixty years.  ;-)

Building on one of my comments, “I miss my darkroom” (Blogging 101)

Well here i am with a previous assignment (write a post that builds on one of the comments you left). As you can see I am behind in my assignments.

Hmmm,  I have made a few comments, and I suppose there are a few I could expand on but this is the one I’ve chosen.

I did reply to http://exploratorius.us/2015/01/12/42287/ saying “I miss my darkroom”.

What I do miss is the process and physical activity of creating of an image in a darkroom. The negative and the original image were in my mind but I had an idea to depict that image in my own way. No digital imaging package will ever replace the futzing around with enlarger lenses, aperture, exposure and filtering. I also enjoyed the thought process involved around each image, what paper I should use, dodging/burning and other effects required to get the result I wanted. It would be unique, mine, all mine!

There was a great satisfaction at seeing the final print when (if) I got it all right. Yes there were days when I came out with several prints. But after careful examination, or just living with them on a wall for a bit, I’d have to go back and edit or possibly start from scratch.

Another reason I miss the darkroom is that I feel coerced into going digital. I do like the idea of digital. Clean and immense possibilities. There are many advantages and I am prepared to admit that.

No-one within 100 km (60 miles) of my home that develops film any more. A few places still sell film but they all send their rolls to third parties for processing.

I am thinking that at least I can do do my negs on my own. (If I screw that up I am right to here to chew myself out for the mistake!) The only things I need are a new thermometer and whatever chemicals I decide on. (I am used to D-76 or Rodinal, but am not sure what is around anymore. Perhaps I may try C-41 for colour too! Some research is in order.)

The bulk of my equipment has been long since sold off although I still have a box
of tanks, bulk loaders and other paraphernalia that no one wanted. I was thinking
that I should get them to the Salvation Army or Goodwill…

Then again if I start to process my negatives again I’m gonna need those items.

For my dream reader – (Blogging 101 assignment)

The morning was crisp and sunny as I sat beside the patio doors. My wife and I
were enjoying our morning coffee. The radio plays in the background. We
are reading the news, chatting and enjoying the view. We are very lucky to have
no neighbours directly behind us. Just green space. Only half paying attention I
glanced outside.
The dusting of snow from last night lay across the ground like a freshly
laundered and pressed sheet. Up the slope the leafless trees were a sharp
contrast. Suddenly I noticed it in the trees. It is that elusive thing I keep my
eyes out for every winter. The effects of ice on trees or structures has
always fascinated me. Rarely however do I have a camera anywhere close (or am in
a position to use one). I gulped a bit of coffee and made my way up to the office
to grab my camera and came back down to get a shot of that ice veil before the
sun turned it to water vapour.
As I slid open the door I realized how cold it was (-20 something C.). Cool
enough to… (well you can imagine). Of course the screen door was frozen shut
and did not want to move but I didn’t want it interfering with my photo. After a
few moments of persuasion it saw reason and cooperated by sliding aside.

DSC03448-1024

Another swig of coffee to warm me up I realized I could have got a better shot from the office window! I made my way back up to remove the window and screen and snap a few quick shots.

DSC03454-1024

The old Point-and-Shoot does not give me the creative control I would like. Also I’ve just rebuilt my computer and have not yet installed The Gimp so there are no effects other than crop and resize.

There are times I drive for hours to a scenic place to take photos. This one was right here.

 

 

Something I learned a long time back:
Keep your eyes open and be aware of your surroundings. One never knows where
that next interesting photo will come from.

Today’s Task

Well here I am. Back after some time and hoping now to make this a more permanent visit as I have not the motivation to come to blog.

It has been a while since I’ve written and I am now taking this “Blogging 101” to attempt at making the blogs I want to write instead of just using WP as a soapbox to vent (although it works fine for that too). As part of this I have also changed up my Theme to make a better reading environment.

Part of Blogging 101’s first assignment is to “Introduce Yourself”…

To begin with I am a retired guy who enjoys photography, hiking, music, computing and writing (when  I don’t have writers’ block).  I have worked in construction, engineering, sales, computing and photography (briefly).  Also, I am Canadian.

Another part of Blogging 101’s first assignment asks “Why are you blogging publicly, rather than keeping a personal journal?”  Great question !!

Perhaps it is because I have learned a lot over the years and I am hoping someone might benefit from a comment or post.  If that is so then I have accomplished that little bit more.

Gone… before its time

It is unusual for me to toss something out that has not met its time (I have working computers from the 1990’s, I have had cars on which I’ve put on well over 400,000Km) but my barbeque went to the recyclers this morning.
It was only three years old😦 but it had some issues that I was not in a position to be able to repair.

The major one was rust. Yes I could buy the parts and put them on myself but I had issues there too. When I contacted the Canadian distributor regarding the rust issue they were only too pleased to quote me prices for the parts. As I pressed for why it be rusting out after only three years, the customer service rep was telling me that ‘well it is old and you should be getting a new barbeque‘.
(Oddly enough my (10 year) old barbeque is just down the road as I gave it to a neighbour who could not afford one. He replaced the burner last year.)
The other major issue was the quality of construction of this unit. It was so poor that I was not willing to undertake any repairs on this product.

The fact that I paid zero dollars for this does not make me feel any better. It was won through a promotion at a local pub and at the time I thought it was a great thing. I checked it out at the store and it seemed like a good unit priced at $450.00. Only later did I realize what a piss-poor job of both design and manufacture this product was. For instance the front support bar was fastened to the legs with only one screw at each end resulting in it twisting out of alignment, becoming unstable and not allowing the doors to close. I was constantly having to tighten screws and bolts. The metal(?) heat shield seemed to be made of cardboard sprayed with metal paint. Not what I’d expect for something that is expected to protect the propane tank!

Now that I am shopping I have decided to stick to products manufactured here in Canada (we have some really good ones) or the U.S. (where they also make some quality products). I will have to pay a bit more but well worth it as the quality of parts and manufacture is far superior and Customer Service actually means Customer Service…

No names have been mentioned in the above post to protect the guilty.