9. Wegener's

 What is Granulomatosis with Polyangiitis?

Granulomatosis with polyangiitis, also known as Wegener’s Granulomatosis, is an inflammatory disorder that mainly affects very small blood vessels in the respiratory tract. Both the upper airway (sinuses, nasal cavity, windpipe) and lower airway (lungs) can be involved.

The disorder may also affect small blood vessels supplying the kidneysm and other tissues throughout the body. Reference http://rheuminfo.com/diseases/wegeners-granulomatosis/what-is-it

The word inflammation comes from the Latin word inflammare, which means to light on fire. You can think of it like this: in people with Granulomatosis with polyangiitis, small blood vessels in certain areas of the body are “on fire” and are eventually damaged. This can cut off blood supply to vital areas of the body.

So, my immune system starts working overtime to fight the "invading army"; Only problem is, there is no army, so all of the defending anti body are still actively swelling up the blood vessels and stopping blood flow to different areas of my body.

So Cyclophosphamide (Chemo) is there to slow down the defense system. 1200 units every three weeks, just enough to do the job. Not enough to damage bone marrow... they hope.

I am scheduled for 10 doses to start, as it has a cumulative effect, I am getting more drained from each does and it takes longer to recover each time. The upset stomach is getting worse too, but medication is helping with that.

Pain has started to settle down nicely... and then the spots start to come back after my 8^th session. Things are moving very slowly though, so it is helping, just not quite working.

On my 9^th session it is decided that we will discontinue Cyclophosphamide.  Wait, I thought this was the big sledge hammer tool against Wegners ?

Remember when I said I had great doctors? They've got another treatment up their sleeves.

Rituximab is an interesting drug, as it is a chimeric antibody. This means that it contains portions of both human and mouse antibodies mixed together.  So, here is my thinking, as long as it works I don’t care right?

But then I think, hey wait, if this is part mouse and part human does that make me a mouseketeer? And, if I am a mouseketeer, do I get any discounts a Disney Land?

If it actually works I may even get to go.   It has a great story behind it too:  https://speakingofresearch.com/2009/07/13/from-mouse-to-monkey-to-humans-the-story-of-rituximab/

So, I go for my first treatment and we are preparing all the information, reviewing my current health levels and I have a little infection in my mouth from all the Prednisone and other medication I take.

Treatment canceled, I feel terrible as a special infusion nurse has been booked for the whole day, rooms changed and rescheduled and now all changed again just because of a little infection.

Usually, if you have a bad case of thrush, they will give you 1 pill it will go away in short order.

I get 2 pills a day for 10 days and a liquid 4 times a days until treatment is complete.

Rituximab apparently will make thrush go ballistic, so get it gone before treatment.

Ok, when you  get the treatment they give you Benadryl, an allergy medication, the kind that makes you really tired, 100 Prednisone and 1000 Tylenol and start putting this stuff in very slowly while they monitor for adverse reactions. Seems it is fairly common.

It’s a long day and by the time I am done I am so tired I can’t even drive, to be honest standing is a real challenge and I can‘t wait to get home to bed. But you know what, I had two pretty good days before my next treatment.

Treatment 2 pretty much goes the same way, except I start to feel better the day after and it stays for 3 days or so.

Hey! First improvements in 8 months, things are looking up!

Treatment 3, other than the day of treatment feels pretty good the whole week, starting to feel like I am taking too much Prednisone and could start to cut back (currently at 50 mg day, been at this level for several months now).

Treatment 4, the last one of the set, and it seems to take a little more out of me than the other treatments; But after a few days can really feel an improvement.

It's hard to explain, but the downward decline seems to have stopped, got the fire out. I think now it's time to rebuild and I am starting to feel better, so much improvement that I actually go outside for a little while, I even visit a large art gallery and I show my art portfolio... but  that's for another time.

8. Hamilton Inner Bay

Hamilton Inner Bay

"Hamilton Harbour, also known as Burlington Bay, lies on the western tip of Lake Ontario, bordered on the northwest by the City of Burlington, on the south by the City of Hamilton, and on the east by Hamilton Beach and Burlington Beach." -Wikipedia, 2016

By the time I started painting this picture I had already had more than three (limited) flares of Wegener's; Meaning that the disease had not affected my major organs yet and I could be treated with alternative medications.

I was involved in some research using different medication to manage Wegener's and was either taking a real drug or a placebo at the time of my first major flare. You may ask yourself "If the disease is so dangerous why take part in this type of research?" and the simple answer is that if I am used as a test subject now many people in the future may be spared and I am more than willing to take a small risk to me now if it can help thousands later.
  

Up to this point, Wegener's flares start out with little red spots on the skin of my legs and feet. In a few days these turn into blisters and my joints start to swell.

About two weeks till the flare peaks from there. Remember earlier when I said I had back surgery with no pain pills and thought that hurts? That was not even close to having a Wegener's flare-up.

Every joint in my body hurts at the same time, I am in so much pain I cannot think straight.  Recovery time about three months and then I would have a few week of peace and another flare. 

Ok, so I am in the research program taking a test drug/placebo and I start having flare.

Wednesday: Little red spots and I hurt everywhere, visit the hospital a team of doctors including my specialist look me over not positive this is a Wegener's flare. Wait 12 hours see my doctor again the next day and spots turn into blisters and my feet look like hamburger meat.

Yep, this is definitely a vasculitis flare, but this is progressing very fast. Ok, stop the trial get the real medication and start taking it for two weeks; Remember, at this point I am still in great pain, I am taking 1 Advil 600 every 4 hours, 2 Tylenol extra strength every 4 hours, and hydromorphone twice daily (a synthetic Morphine that is 8 time stronger).

All this, and it feels like I am taking nothing.

Two weeks goes by, I can hardly move. Can’t sleep more than a few minutes at a time in a chair. The pain, at this point, is incredible and I start thinking about ways to get off the bus, this is torture.

Then, as I am getting ready to go to a doctor’s appointment, I start to cough up blood.  One advantage of being on a trial drug is you have direct contact with a nurse 24 hours a day 7 days a week , so do I go the emergency or doctors clinic? Both are at the same hospital but at opposite ends, so not a major difference.

Nurse said come to the clinic we can always take you to emergency when you get here. Ok, get in, things have settled a little get chest x-ray and back home.

Get a phone call 10 pm Friday night. My doctor just got the X-ray report and has arranged for me to see a lunge specialist Saturday morning at the hospital.

November 21^st 2015, I am admitted into hospital with bleeding lungs and injected with 1000 units of Prednisone for 3 days and start 1800 units of Cyclophosphamide (Chemo).

Let me tell you 1000 units of Prednisone is like drinking all the coffee you could fit into a super tanker in one go. I was bouncing off the walls, talking a mile a minute. I think I said more stuff , and faster, in those three days than I did in 10 years of teaching. Then they put the chemo in. Wow I had no idea you could go from fast forward be to full reverse in such a short time.
 

So now I am tired, feeling pretty low and, according to the X-rays, still getting worse not better; But then I get notice from Fine Arts America I have sold my first two prints.

Funny how a little positive energy goes such a long way.

I found out later that my aunt bought two of my paintings while I was in the hospital and even today I don’t think she can truly know how helpful that was for me at that time. 

A professional is a person who performs a task or service, for money, that most people could do for free if they had time to learn and improve.

At the point where I thought my life was over, when I was planning my funeral, I sold a print of a small painting of a pile of rocks in a little bay in Lake Ontario; And I got to start at life again and become the professional artist DAB.

7. Small Island

Small Island

This is the view from the opening of the Desjardins Canal between Cootes paradise wetlands and Hamilton inner bay on Lake Ontario. The small island is man made to help protect the nesting birds. This was as far as I could walk at this time and my wife and I would rest here before heading back to the car and home on our daily walks. 

The original painting is only 8 X 10 inch. So, much of the detail and beauty of this location is hidden but the memories of the time spent walking with my wife as we got adjusted to this new way of life, are priceless. 

Using only the primary colours I wasted more paint, trying to remember how to mix the colours after a thirty year absence form doing any art, than I used on this painting, but it was a good stepping stone and an enjoyable experience.

I actually painted a colour wheel after this for practice. I distinctly remember when I left high school art saying I would never ever paint another colour wheel again.

After all the things I have experienced, this is probably the first time I slowed down enough to really think about things.

I have spent way too much time working hard in my life and not enough time enjoying what I have.

Yes I did make time for my family by taking holidays, being my children’s Beavers leader, Cubs leader and soccer coach, playing games; all sorts of fatherly things; But, I never slowed down.

I worked 50-plus hours a week and spent as much time as possible doing something all the time. Now here we were, my wife and I walking slowly down a paved path, no rush, just time to talk quietly, share and adjust to this new way of life.  It was what we needed and I am so happy we had this time together.

It might just be a simple painting, of an insignificant stretch of water with a pile of rocks for an island, but it sure helped me. 

6. Caught a cold.

I've caught a cold. Should be okay right?

Ok, keep going to work, cold gets worse; Take a day off.  Start to feel better, return to work. Cold gets worse, take a few more days off, take a week off, and take 2 weeks off.

Finally get back to work for a few days and my knees hurt so bad I cannot stand up.  What's going on? They are hot and swelling and I have over an hour to drive home. 

Get home, pick up my wife and off to the hospital. Turns out I have torn the quad tendons in both legs and will need to be in a Zimmer splint on the right knee for 5 weeks. Can’t walk or bend my knee. 5 weeks of not teaching turns into 11 weeks. Seems the leg is not healing and now my wrists and hands are starting to have problems.

Ok, things are going downhill again. It's ok, I’ve been through this before, just keep calm. I worked at a private school, so 10 days of sick leave are gone, unemployment insurance will cover me for 15 weeks.

My son is studying at university; my daughter is in college, my wife hopefully will find a part time job to carry us and social assistance said they will help too.  Ok, we get to keep the house this time, just need to cut back on any extras and we’ll get through this. 

Off to see a Rheumatologist. She is newly starting out in her own practice, but just finished two years working with the best doctor I have ever seen and recommends an ANCA blood test to rule out Granulomatosis with polyangitis (Wegners), an extremely uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys. It couldn't be that right?

Guess who has Wegner’s. My ANCA levels are off the charts and this very new Rheumatologist doctor has found it very early and is sending me to see Dr. Kalidi.  

http://fhs.mcmaster.ca/medicine/rheumatology/faculty_member_khalidi.htm 

This man is the person you want to know if you have Wegners in Canada. How blessed can I be to have such a great doctor and his team? 

People come from miles around to be treated in Hamilton and I am 15 minutes away. Now, you would think someone with this doctor’s credentials might be arrogant or have a terrible bed side manner. No, not this man, he is great!

Answers all my questions, supports me, and takes away most of my fears. He even calls me at home on weekends when he gets a bad report from one of my tests and sets up lung specialists on a Saturday.

Ended up in the hospital for a week, but I’m alive.    

More about Wegners http://www.celebritydiagnosis.com/2014/02/death-ghostbuster-harold-ramis-gone/ http://rheuminfo.com/

Ok, so I’m sick, it turns out very sick. But hey, I get Ontario Disability support; some Canada Pension money and my medical expenses are being covered.  My kids get to keep going to school and I get to buy a coffee every couple of weeks. Life is still good, I am alive, still got a place to live and I am getting great medical care.

Then I get my first real flair up from Wegners and the pain is incredible. Wow, back surgery without pain killers is nothing compared to every joint in your body hurting, all at the same time.  

It took two weeks for the Prednisone to reduce the swelling and ease the pain, and that put me at the limit of my ability to cope. For the first time in my life, I wished for death to ease the pain, but I’m still here and the pain passes, and knowing the pain will pass makes it easier to cope.

The next three flairs were worse still, but knowing you can get through, makes it easier. Over the last two and a half years my doctors, yep, now I have a team of 7+ specialists, have tried several different treatments, including 9 sessions of chemo and am now trying Rituximab. I have very high hope for this one, so I am sure I will get remission, to at least stop the flares, soon.    

Two years at home, can’t really go anywhere nor do much. I am stuck in a dark place looking out at the world.  I’ve watched almost every movie on Netflix already. We don’t have cable, it’s too expensive and I am bored out of my skull. My wife brings me a $3 dollar acrylic painting kit of an English country home.

The dollar store has two more kits, a bunch of roses and a cheery blossom tree; Ok painted them, now what? Middle of November 2016, buy blank canvas and a tube of red, yellow, blue and white quality paints and that’s how I started my journey of becoming the artist DAB. 

I am getting out of this box and moving on to something new! I hope you will accompany me along the way as I make these paintings and explain why and what I was thinking, or not thinking, at the time I made them.

See ya all next time!

5. Modern Joys

What happens to all of the modern "Joys of Life" after 2 years of not being able to work?

Yep, you guessed it. They all go away. Goodbye house, second car, camper trailer. So here I am 37 years old, a wife, two kids, a little bit of furniture and a small apartment.

What do I do now?  Well, you spend some time like learning to walk again at the pace of a caterpillar! Then you head to university to become a technology teacher, why waste all of those years of experience and training right?!

So after a successful year in university I go to a Job Fair and for a hoot I put my name into a school in England.

Wife says there is no way we are going to England...

Then I get a call from the school in England on Victoria Day, I thought it was a joke, I mean don’t they celebrate the Queen’s birthday there too? Turns out it’s a different day in England. Anyway, they want me and are willing to fly me and my family, as long as I commit to one year. I stayed for 7 years.

So, I get to England and start teaching and find out my qualifications are not good enough, so teach during the day and more part time university at night. And 3 years later, I get an honours degree, and I am a now fully qualified to teach in two countries, still love teaching. This is my calling, work my way up to second in charge of the Technology department when the head of department’s wife gets Cancer.  Two other teachers leave, the head of department and his wife are out for health reasons, two teachers are untrained and I have a whole new department of new teachers learning all these subjects... and the school is going through a yearlong Ofsted school inspection. Can it get any worse?

Yep, unfortunately one of my new teachers had died half-way through the year unexpectedly, and now I really work myself silly for the whole year; Writing lesson plans, writing reports,  providing training and keeping all the subjects running, let alone actually teaching students!

The department is still doing great, very high grade average, beyond target even. To celebrate? The school hires the husband of one of the Geography teachers in to be my new boss. Wait…  What’s going on? This can’t be right, this guy has no idea how to teach all of these subjects!

At this point my son is finished A-Levels, my daughter has completed her GCSE’s, and I can’t take anymore! I am done; we are going back to Canada!

Although my time teaching in England was over, I feel I was very successful. I had above 90% pass rate, most of my students not only enjoyed my subjects but did extremely well and all of my engineering students now either have a trade certification or engineering degree.

Got a message from one just last week, thanking me for giving him the love of engineering!  He now works for Warner Brothers, making sets and you may have even seen his work in the movies Harry Potter, Wonder Woman and the Justice League.

When I became a teacher, I searched out my old English teacher, who was now working for a brain injury charity organization, to thank him and explain how he changed my life. I remember a moment on the phone call where he choked up and I could tell I brought a tear to his eye and filled him with joy.

When student’s find you years later to thank you for what you helped them with, it is the greatest feeling in the world. I have received that call several times since I left England, and each time it has brought a tear to my eyes and great joy to my soul and this feeling never diminishes. 

Back in Canada, I take a year off teaching to work at a satellite internet company and recover my mental strength. Help my son buy a house, and move in with him to pay the bills while he goes off and studies at university to get his degree.

Then I take a job in a private school as a teacher and technology integrator. I turn a chalkboard school into a high tech interactive white board school with multimedia in each classroom. Love this job; Love the school and the staff. Everything is going great and then I get a cold... but that's for another time.

4. Work

Where was I? Oh yeah. 

Hand on the door to the college; My dad is with me, telling me he will pay for my first year and… my mouth opens and out comes "Dad, I don’t think I can take another 4 years of school right now, I need a break!"

Dad said "If you don’t go to school, you’ve got to get a job."

Yep, I’ll just work for a year maybe two then go to school. Yeah, right! Off to work I go.  1 year a butcher, 2 years a plastics extruder operator, 2 years food processing line worker, 1 year grounds and marina caretaker, 1 year computer software sales rep.

Then walking into the employment office looking for something new and out comes a man who asks if I can weld, if am I looking for work, and finally "When can you start?"

 

I said it will take about an hour to get my boots! 

After 3 days of bending over a band saw doing the most boring job I have ever done, he hired me full-time and started to teach me to be a tool and die maker.
   

15 years later I was still working as a tool and die maker. Studying die theory, metallurgy, blue prints and working on everything. Cars parts, ice-cream making machines, and even parts for nuclear power plants.

Work my way up from apprentice, to department head of a small shop, to foreman of a seven person jobbing shop where I spend most of my time troubleshooting and telling others how to fix various tooling problems.
 

Things are going great, I met the love of my life, have two great kids, became the leader of our local cub scouts group, bought a house, a camper trailer. All the joys of modern life.

 

July 13^th 1991 I met this beautiful lady. One week later, I told her “she was the women I was going to marry”. She said ….

“Your right” and we got married 3 months later.  This October 2016 will be 25 very fast years together. She is still a beautiful lady and my best friend.

One day, I am putting up a swing set in the back yard for my kids and wham. Out goes my back. I can’t walk; I see chiropractors, massage therapist and doctors, no relief.

There is a reason they don’t do all those surgeries to fix club foot anymore, apparently it wrecks your back. After two years of suffering, I finally get to see a back surgeon, one of the best in Ontario and possibly North America, and he says "I can fuse your back but you will never be a tool and die maker again but the pain will be much better and you will be able to walk."

 So I get the surgery May 1, 2002, 5 days before my 37^th birthday.  As I am waking up they find out this guy is also extremely allergic to morphine and cannot have anymore or it will kill him.  At the time I thought this was the most pain I would ever experience.

It hurt so bad I could not even open my hand to release the morphine pump, and legally the medical staff couldn't do it for me either! They did try some Percodan on me instead, but that's for another time.

3. Moving on

Chained

If you can’t break the chain, rip out the post and drag it with you.  

Stuff happens. I figure you have two choices; you can sit down and quit, or get up and move on. 

While working in the metal shop at school, I hear the teacher yelling out to me, I look up and see all the other students and the teacher in the doorway pointing at a flame above the acetylene tank I am using. Yep. Big tank of highly explosive gas with a little flame burning nicely on top of the shutoff valve, I’m in trouble again. So I calmly lean over, cup the flame and blow it out. Teacher said I could have blown the flame into the tank.

  

Well, I figure if I run for the door it could blow up before I got there and kill us all anyway, so better off to try and put it out. Moral: Keep calm, don’t get blown up, and you might even get a great reputation around school of being the bravest kid around.   

Taken Hostage: grade 11 technical Drawing class. Student sitting behind me is requested to the office. He doesn’t want to go so grabs a utility knife (the one with the very long and sharp extendable blade). Puts it to my throat and says he wants to leave and I am coming with him.

The poor student teacher is in shock. The knife leaves a little cut  on my throat and we are standing there for what seems like forever.  There was nothing I could do, so I stand there nice and calm and accept my fate.  Seconds later he puts the knife down and runs out of the room, we heard the police drag him out of the school moments later and then never heard from him or about the incident again. No big news story, no councillors, no "bring everyone together to talk and cry", just move on past it and survive. The poor student teacher did take a few days of to recover.

Sometimes bad things happen to get us ready to handle things that are much worse. Later that year I was attacked with a knife again, and if not for the two previous experiences I may not have kept calm and walked away alive. The pain of this experience is still chained to me but it will not stop me from moving forward. I ripped the pole out and dragged it with me.

That’s it, enough sad stuff right? Just finished making the sign for the teacher’s end of year party “We made it!”. Heading to my last art class in high school and … My Art teachers dies. Massive asthma attack. He died outside his brother’s house the night before.

That’s it, I am done with high school and headed off  to college! But of course “We don’t accept applications from your school”, so I had to go to a main stream school for at least one year to get in.

So OK, spent one more year at another high school, completed grade 11 and 12 accounting, computer programming and system analyst.  Bored out of my tree, seems main stream schools teach at their pace only, not the pace I can learn?

OK, I’m finally ready for college and certain that I am going to be a computer programmer; I have my hand on the door... but that's for another time.