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I wish that people would understand

Who would of thought that I would not be able to return to my favorite sport after a "simple" tumble. Year was 2011 and I had just started a new job in a upscale car dealership. The previous year was a wreck and I needed a fresh start at a big company that did high volume and I wanted a new challenge... and boy did I get one, but it had nothing to do with my function, field or interest. Three weeks after starting my new job, my best friend from childhood calls me up and invites me over to his cottage for a day of skiing.  I was an avid fan of the sport, but I had gone skiing only a handful of times in the past 3 winters.

Considering myself to be a good skier, I did not hesitate and told him that i'd be right over the next day.  It was the last run of the day, when suddenly, my right ski caught onto something, I planted head first (thank God that I was wearing a helmet), then remember feeling my right boot hit my left knee (on the outside of the knee) and I slid down a few yards. Sure, it happen right under the chair lift, but at that point, I did not care.  As I got up, I felt a little "pull" on the outside of my left knee.  I did not pay too much attention to this for since that summer, whenever I would run on the treadmill at the gym, I'd feel the same thing... this would happen after 10 minutes or so, and I never gave it much thought and or consideration.

As I drove home that night, I took care to massage my knee, thinking that I might of "pulled" something and that was that.

Fast-forward to a few weeks later, and I would still have that same "pull" and now, my leg would feel stiff in the morning.  It got to a point where I needed crutches to get around work. At about that time, I had the chance to see a chiropractor who referred me to an in-house Physiotherapist, who hinted that perhaps, there was more to my ski fall then I had thought. Mechanically, there was some significant limitations and she did a bang up job to limit the inflammation, but as the sessions went on, I got worst until one morning, I woke up screaming in pain... I could not open my fingers.  It felt as if someone had jammed my fingers in a metal door, over and over again.

Long story short, I was still on probation at work and the boss did not like to see me in crutches and used that excuse to let me go (obviously, before my 3 month probation was over...), I was now at home, jobless, in pain and no one could tell me why.

I managed to get an appointment with my doctor, who then referred me to an orthopedic surgeon (had to wait 3 months for the appointment) and 8 hours the day of the appointment, to be told, after 2 minutes of moving my leg in different positions, that this was a systemic condition.  that is when I lost it!  I demanded to see a doctor, not an internist (medical teaching hospital associated with [the] university) and that this made no sense.  A few minutes later, the doctor came in and spend a total of 30 seconds backing up what the internist had just told me and wished me all the best.  (Universal Healthcare at it's best!)  The orthopedic surgeon recommended that I go see a rheumatologist and it is there that I found salvation and a glimpse of hope in a very dark and stressful time for me. As I made each step, I hurted from both knees and at times, I just felt like throwing myself on the floor so someone could come by and put me on a stretcher.  I arrived in the rheumatology dept. and a young man was at the counter.  Still fuming from my previous appointment, I  knew that if I would come in barking, they would not be sympathetic to my cause or situation and give me an appointment in 87 months.  So, with the little energy that I had left, I calmly explained my situation.  The young man at the desk told me that the next spot he had was in 2.5 months (which is not that much in today's term) and when I heard that, I took in a big breath and leaned in... "Jonathan, I dunno if I can wait that long man... I am in some serious pain... it takes me 10 minutes to get out of my bed and go to the bathroom... and I live in a small apartment.... is there someone above you that can help me out... just once?"  He paused and called over his superior, which is now the full time assistant of many rheumatologists. When she came to the desk, I went over my story, using the same words, tone and examples.  She was very sympathetic to my cause and to my extreme surprise, told me to come back in 2 days.  Inside, I was happy like a kid in a candy store.  I knew that from now on, I could only feel better, even if it would take a few weeks before I start to really feel better.

As I am writing these words, I have had 2 flare ups, but mostly, they are manageable.  I was on prednisone until a few weeks ago, and now my knees are very swollen and the MTX (methotrexate) is more or less efficient with my situation.  I have been diagnosed with psoriatic arthritis (joint) especially in the knees, but I do have some in the fingers and in my left foot/ankle connection.

People who have never had this do not realize how de-stablising this disease can be.  When I mentioned that it took me 10 minutes to go to the bathroom, I was not exaggerating.  It would take me 5 minutes to get the courage to get up, 2 to get in my computer chair, that would act as a form a wheel chair and another 2 minutes to get back up and to my computer, bed or sofa.

As of today, I was prescribed Arava (leflunomide), but I am reluctant to take it due to the numerous side effects and the fact that I have to go for a blood test every month.  Not to mention cost of medication, luckily for me, we have public health insurance in Quebec, (costs $38.75 for 1 months supply vs $98.00 for selling price) but, I am working minimum wage and every dollar counts.

Oh, as of January 2014, I have been bald...Culprit: alopecia universalis... I keep playing the lottery but I never win.....  Anyone know any link between the two, besides them both being auto-immune diseases?  I'd be curious to know... (Had a few incidents of alopecia areata when I was much younger) and it came and went for the past 2 summers, until last fall when I started to lose a lot of hair on the top left side of my head, until one morning in October when I was losing 10-15 strands of hair in the shower/morning.

There are some days when I can barely move or do any lower body exercises at the gym.  Actually, I did a few sessions of Stair Master (5-10 minutes max per week) and since then, swollen up and that is my fault, but I do not want to live as a recluse.  Lower body work outs mostly consist of biking and elliptical machine and sometimes, Jacobs Latter (2 minutes is my max).

As I read some of your stories, I do count myself lucky and this is a reminder that we have to appreciate what we have, even when pain strikes. But I remember when I could not even reach in my pocket to get my keys/wallets...or when I would apply for a job... I could not go to the interview limping or in crutches, that is an automatic refusal (let's be honest).

My last few words on this article would be that: I wish that people would understand what it is to live with chronic pain that privies you from enjoying the "smaller" joys of life (walking, running, doing a sport, etc). My life at times, already feels so restricted (anxiety, lactose Intolerance (not being able to appreciate a meal, here or elsewhere, without wondering if there is any milk or milk products), alopecia universallis (I am a man that liked his hair)and psoriatic arthritis) that at times, I wonder what is the point to live this type of life... will I be able to go out there and do what I have to or just stare at other people living their lives?

Food for thought.

Thank you for taking the time to read this.

Submitted by a 31 year male living in Montreal ,Quebec,Canada

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