| Kevin
Shubert |
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Joined: 2009-05-29 09:38:13
Posts: 6
Location: |
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I thought I'd kick things off in this Forum by introducing myself, and telling my story. Often, Advocacy groups encourage us as part of raising Public Awareness, and Advocacy, to share these stories, so I hope you all jump in at some point too! I am going to be as forthcoming, honest, and as complete as possible, so strap yourself in for some reading - you might want to pack a lunch.  Please also keep in mind this is still a work in progress; I'll post updates as I finish it.
This is a very emotional thing to write, and as I am doing so, it's bringing up all kinds of emotions, but it's one of the exercises that a counsellor once suggested to me to go through. I hope you get something out of it, primarily HOPE, and take the opportunity to do so yourself.
My name is Kevin Shubert, and as dramatic as it sounds, I'm a Spondylitis Survivor. I was born in the Royal Alexander Hospital on a rainy July 20, in 1968.
I've since lived in many parts of the province, and even lived for almost 3 years in Costa Rica - an experience that has changed my life, and if you're looking for a great place for a tropical vacation, you won't find a better place for. The people are very much like Canadians - friendly, open-hearted, and easily among the strongest work ethic, as I was to find out when I worked as an Executive for a software company with the bulk of our client business there.
When I was 12, I had a sudden burst of weight gain, my fingers would alternatively swell and contract, my achilles tendon was inflamed and sore to the touch, and I began to experience extreme fatigue and pains in my pelvic region. Over the next 10 years, I would be diagnosed with everything from gout to having one leg longer than the other, and in the end, failing to identify the cause properly, the old standby many of use experience, the doctors diagnosed me as clinically depressed.
Of course, today, we know that these are just a few of the symptoms that Juvenile Spondylitis patients present.
In 1992, just a year prior to my wedding to Susan, my wife, soulmate, and personal Hero, I started to experience more symptoms. I began to have trouble bending to tie a shoe, reach bottom shelves, and pains started to move up and down from my right hip. Things came to a head one morning, when, half-way from the kitchen counter to the table, I literally froze, unable to move from the crippling pain.
Susan and I share a certain black and morbid humor, and that morning was no different. As I wasn't in obvious distress, Susan laughed, took my cereal bowl, and hung a coat on my outstretched arm, and walked away. Of course, shortly thereafter, she came back to help me out. Doctors diagnosed the issue as bursitis, and although a course of physiotherapy, ultrasonic thearapy, and "stretching" via machine helped, it didn't completely remove the pain, and the issue remained. Trips to internal medicine specialists were not fruitful, the nearest diagnosis they could make was that I had a "moving disc" and failing progress while wearing a brace around my lower back, surgery was suggested; I thank God today that we didn't go for the surgery option.
We were married on July 17th, 1993, at Fort Edmonton Park, in the 1905 street Anglican Church. With a lot of good wishes and love from family and friends, we began our marriage with our dinner and reception in the nearby Fort's large dining room, a memory we'll have and treasure forever.
In early 1994, we moved to Grande Prairie, as I was working in the retail industry, selling, servicing, and supporting computers for London Drugs. Things were going well, and we had much hope for the future. However, in July 1994, after we received the incredible news that we were expecting our first child, I developed many more symptoms - the "freezing" from pain continued, I was unable to bend, and was forced to take 3 months off. Due to the slowness of the private insurance coverage's issuance of the expected cheques, unfortunately, we were put into a downward financial spiral that would take years to recover from, especially since the few credit cards we used declared that I was not covered due to a "Pre-existing Condition" clause, regardless of the fact that we had not had a proper diagnosis of the actual cause, and would not honor the coverage we had been paying them for short term disability insurance. I am not going to hesitate to name these companies, because I firmly believe that this was an unjust position to place us in - they were Master Card, Canadian Tire, and our Esso Gas card. We had to carefully budget to be able to eat, have transportation to go back to work, lost our telephone, and were late on our late rent often, as we tried to catch up once I returned to work after 3 months.
At the time of having to take time off, I was finally properly diagnosed by Dr. Gerald Webb, our family physician, a taciturn almost elderly gentleman, who as it turned out, suffered from Ankylosing Spondylitis himself. After the time off, combined with some Physiotherapy and Occupational Therapy targeted to A.S. patients, I was able to return to work.
In September, 1995, we were blessed with the arrival of our first child, Chandler Donald Charles Shubert (oddly enough, Chandler was not chosen as his name from the sitcom "Friends", but from a book called Ghoul, written by Michael Slade, at that time a group of five lawyers in Vancouver. A character named Zinc Chandler had the name stand out, and it just felt right - Donald is my father's first name, and Charles is Susan's father's first name). That December, we made the decision to move to Ft. McMurray, as it was obvious I was not able to continue in my retail career. I also had to stop doing extra contracting work, as I had been doing for many years, doing software design and development based around databases. I worked on the Syncrude site for the IT department as a Contractor (through what was then known as MuliTech/CompCanada - >their< handling of my case when I had to take another 3 months off in 1997 was the worst experience in my working career, humiliating and as I understand it today, fraught with more labor standards violations, human rights violations, and just plain meanness than I have ever experienced in my life. Period.), and began a long and successful career in Information Technology, which ended in 2005, by which time I had worked up to an Executive level in my career.
In 1996, our second blessing arrived, Cheyenne Sharon Ingrid Shubert (Sharon is my mother's name, Ingrid Susan's). Both children have been my salvation, and between them and Susan, I attribute the fact that I am still alive, directly to them. Over the next 4 years, I worked as a Contractor, and then as an employee, continuing to learn and rise through the ranks as my career progressed, starting with Voxcom Security, which at the time was somewhat supportive of my condition, especially my immediate manager, Anthony Allen. I continued to have issues, and in 1999, participated in trials of Pamidronate, a chemotherapy drug for cancer patient, being given in a diluted formula, to A.S. patients. Unfortunately, I didn't react positively; the monthly trips to the U of A hospital for the IV treatments returned to haunt me in other ways later.
In June 2000, I was having major pain and issues again, our financial situation was horrible, having had to file bankruptcy a few years previously, and our life was by no means easy. I struggled to sleep, I was deeply depressed, and even sometimes considered suicide. I decided to leave Voxcom, and the people I'd grown to love, and loved working with, and take the summer off to be with the children, while Susan started her own IT career. In September, I contacted the company I had received training from while working at Voxcom. They had been bought out by a SportsBook Gaming and Internet Casino software development company IQ-Luduorum, and needed people to work on Contract in Costa Rica. I countered instead, offering to take a full-time position for job security, if they would move myself and my family there. Up to that point, I had been outside of Alberta only a few times, once to Saskatchewan at 14 for a summer camp, at 11 to Disneyland with my family, and a couple of trips into BC on summer vacations. Other than that, I'd been to Los Angeles in early 2000 for training, and that had been the extent of my travels!
I spent two 10-day contracts in Costa Rica, returned to Edmonton, and we packed the family into 5 large suitcases, and with the help of my mother on getting settled in, we moved into a wonderful house in Freses, just outside San Jose proper (although it's one sprawling urban landscape in the central valley), Costa Rica. For the next 2 3/4 years, I enjoyed the best health I could remember, worked very hard, and we enjoyed our first real successes as a family, financially, stability, health, and relationship-wise. I worked extremely hard; I only took time off for three weekend trips and 2 day tours the whole time. My only regret now, is that I didn't take more time off to see more of this beautiful country, full of open-hearted and loving people. From a work perspective, I had many Ticos (what Costa Ricans called themselves), Columbians, and Nicaraguans working with me, and I must say I have never had a group of people work harder with me in my life. When I finally burned-out and needed to quit and return to Canada, for professional reasons, I kept my feelings to myself, but I hope some of them find this webpage someday, I miss them all, and I hope they're doing well. Susan at the time landed as position as the Technical Support Call Center Manager for Alienware, and we forged many lasting friendships with people from that as well. If won the lottery tomorrow, I'd return at least part of every year, and I hope to someday retire there. Costa Rica is imprinted on my mind, my work experiences and ethic, and my heart, forever.
There, besides the people I worked with on daily basis, I also met and had the opportunity to be mentored by two more of the biggest influences in my professional career. Anthony Allen at Voxcom was the first, and at IQ-Ludorum, Gurch Singh, the primary owner and CEO, and then later when Roger Stone joined as the new CEO, I learned so much, not only about my profession, managing people, business, and client relationships, but also about life. Gurch in particular influenced my life philosophy, in that there are things we cannot influence, and things we can. The former we cannot change and should not defeat us, while the latter, we should fight and struggle with to the last, with everything we had; Gurch was a fine man, very feeling and conscientious towards his dealings with other people, and regardless of what his clients (the Offshore Sportsbook industry in 2000-2001 in particular was rife with characters right out of The Sopranos, and much of my naivete was shattered in my years there) thought. Roger was always not only interested in doing well, but doing the right thing, for the right reason, extending business relationships into the personal realm as well. Sadly, due to the changes at the company at the time, and the need to keep a distance, I only worked with them on one more project as a contractor before leaving Costa Rica, and haven't had contact with them since - I hope they read this someday, with my thanks for the foundations that have kept me alive, sane, and wanting to leave this world a better place than I found it.
On February 14th, 2003, we left sunny Costa Rica, a balmy +32oC, and flew home, landing in the year's worst cold snap, at the Edmonton International Airport when it coincidently -32oC before the windchill. Meeting us at the airport with Tim Horton's coffee and donuts, and luxury of luxuries for a family now used to a constant 27o-30o temperature year-round, parkas! We stayed with my parents and worked out a place to live, for the next week.
I contacted my old employer and I told they were delighted to offer me a position with them once again. However, this time it wasn't to be a happy experience unfortunately. The night before I was to start work, I got a call from one of the executive; because of my issues with Ankylosing Spondylitis, and apparently my time in the Pamidronate trials in particular, there were some concerns among the executive, and I was asked to present a doctor's note that I was capable of working, before I could begin. Alarm bells began ringing in my head, but having a family to support, I complied, starting work a couple of days later than intended. Three weeks after I started, despite not missing a single minute - in fact, I was often in the office half an hour before anyone else in my department - I was called into Phil's office (then the current IT Manager) late in the day, and informed that my services were no longer required. Strangely, over the next few weeks, I received messages from people in other departments (I mentioned them above in the loved and loved to work with category) on my voicemail at home wondering what happened - for some reason these people were under the impression that I left without telling anyone I was leaving, not dismissed as I was. This was easily the second lowest point in my working career - the first being my wife's position (with a certain events management and yearly fair organization where certain hockey teams play) being threatened, if I didn't withdraw a professional a**essment and report I had been requested to prepare, from submission. Having just had returned from a month off due to A.S. issues, I could not risk my family's financial future, and had to resign rather than continue to work in an environment where we both worked, and both could be let go, if I did my job conscientiously. The company went on to use all my other recommendations. With Susan working elsewhere, if the remaining issues (and they clearly know what they are), frankly, I'd welcome the professional challenge of correcting the situation.
It turned out for the best, however, in March 2006, the month after I left, my family doctor told me I should stop working, I was killing myself, and further damaging myself in ways that could never be repaired. That launched the blackest series of months in my life. Many, many late sleepless nights, the A.S. symptoms compounded by the stress of the depression and funk I was in, were spent trying to deal with the pain, figure out how we were going to live, and in those deep, dark nights alone, several times, I went as far as to prepare the items I would use to kill myself. I'd look at them, cry my eyes out in frustration, and envision the way it would be done. The pain, depression, sheer loneliness (many of my friendships formed from junior high onwards, seemed to evaporate when I either couldn't go out of the house due to the pain, or as was suggested by a counselor I was working with, stopped making the attempts to stay connected; good friendships are important to keeping a healthy mental state, and it was very depressing to find that if I wasn't making the attempts, then these friendships didn't exist outside of my own mind), and shattered dreams were too much.
However, in that state of mind, you eventually wind up one of two things, in my experience, you continue to exist in that deep, dark hole, or you come through the other side stronger than ever. Having seen what suicide does to the survivors, I decided that I could not do that to my loving wife and children or my own mother or father, period. Grasping onto anything that would motivate me - movies, books, games, and most effectively for me, music. I have a very diverse taste, from cla**ical to punk rock; that year, My Chemical Romance released "Welcome to the Black Parade", a themed album. The theme was death, but the last two full tracks, "Disenchanted" and "Famous Last Words" in particular resonated deep within me, and helped me get through. Disenchanted is a soulful cry about life becoming a "lifelong wait for a hospital stay" - meaningless, purposeless, and in the end, in a hospital bed, alone. This mirrored exactly how I felt. However...on the other side, the next song, "Famous Last Words", is a declaration of a willingness to go on, to survive, even if it meant that to do so meant leaving everyone and everything behind to make the changes to make changes to your life needed to carry on, after coming out the other side of the deepest darkest experience of your life. Between Susan, my children, the rest of my family, and this album, I somehow made it through. The next spring, My Chemical Romance was in town for a concert, and we took the kids to their first, it was a very emotional experience to realize in the middle of concert to realize that I'd made it.
In July 2006, we moved into my father-in-law's home on his acreage north of Spruce Grove. He's now 81, and the time with him would be a great experience for Susan and the kids, and we could help him keep the place up. I have to admit it's not always been easy for me, but it has been fantastic for Susan and the kids, and it's given me the freedom to do something I'd been trying to figure out how to do ever since coming out the other side myself - to get involved and somehow help other people who have to go through these experiences as a result of dealing with Spondylitis. That summer, in the interest of trying to not only survive, but a way to have some kind of quality of life, as I was literally homebound, hardly leaving my comfortable position on my bed in front of a DVD player or computer playing games and trying to stay connected to the outside world, I finally gave in after meeting a Psychiatrist and Pain Control Specialist at the U of A, and began to try using narcotics as pain control, along with the occupational therapy I had been trying - distraction techniques, visualization, and biofeedback were all helping to minor degrees. I had seen my best friend and (literally) "brother from another mother", Doug, who later succ**bed to Ehlers-Danlos Syndrome (EDS), Type 4 (Vascular) struggle with morphine addiction, suffer through months of physical withdrawal, and I feared going through the same thing.
However, having decided I wanted to live, I needed to find a way to dull the suffering. Having tried medial marijuana (first in Costa Rica, and then for 4 months here under doctor's supervision under the Health Canada program), I was getting enough relief from the pain to do some thinking. While marijuana does dull the mind (quite a bit), it does take the edges off of the pain to reason somewhat. Frankly, to this day, it's been the most effective, although more expensive due to the fact that the government's markup and unwillingness to approve it, or it's processed forms such as Sativex, for arthritis patients, and a**ign a Drug Identification Number, which would enable patients to receive drug insurance coverage. I was able to think about narcotics seriously, especially after the specialist Psychiatrist/Pain Specialist pointed out that chronic pain alters brain chemistry radically, and that "If you were diabetic, would you really worry about insulin being habit-forming??", I decided to try. We went through a few different combinations, and today, I'm on 24 mg twice a day of long acting Dilaudid, with 10 mg Flexiril just before bed to help me sleep through the nights, and 200 mg Celebrex once a day to try to address the inflammation issues. I'm still in a lot of pain each and every minute of every day, but it's dulled down enough to have a productive life, one where I'm not just surviving, but can pursue a purpose.
That purpose came last year, July 5th, 2008, will be a day forever etched into my memory. Susan and I attended the Patient Forum jointly put on by the Spondylitis Research Consortium of Canada (SPARCC), The Arthritis Society, and my new home to help others with these challenges, the Canadian Spondylitis a**ociation. The day was informational, to be sure, but a few things in particular greatly influenced my life from that day on. First, we heard from other patients during the course of the day who were experiencing the things that we, and I, had; the pure emotional anguish of a wife who's husband was up all night crying and frustrated from the pain and lack of understanding from a society that in this supposedly "enlightened" day and age believed - and most STILL believe - that any arthritic condition is "a natural process of aging", and even if it wasn't an elderly person experiencing it, was "something easily taken care of with a few tylenol or aspirin", and the pure hell of not being able to pick up and hold his newborn baby. The other patient's anguish and suffering continued - employment problems, relationship problems, society not understanding, lack of services, lack of inclusion, the list went on and on, the suffering in the room was palpable, and I am not ashamed to admit being on the verge of breaking out in sobs myself, listening to these problems, and reliving them myself.
The other things that day that influenced me forever, were the constant message that the presenters from The Arthritis Society, the Government agency responsible for examining and reporting on drugs under consideration for universal funding, the Canadian Spondylitis a**ociation, the doctors at SPARCC, and particularly Cheryl Koehn, an Arthritis Activist with Joint Health, who plain and simply spoke about things as they are. All of them, whether they realized it or not, in one fashion or another, along with their main message, delivered this one: the Patient Community MUST get involved. These groups are working hard, and tirelessly on our behalf, but things are not going to make a major change until we, the Patient Community, get involved in helping first each other, and then helping the public to understand as well. Frankly, I think they all should be crowing about their successes on our behalf; the CSA, in particular, along with TAS and Joint Health, were instrumental in getting the Alberta government to extend coverage to two of the new biologic treatments, but only garnered a little press space. If it had been a cancer treatment, however, you can be sure it would have made front page headlines. These folks deserve our respect, our admiration, and our grat**ude, but more than anything else, they deserve the same thing we deserve to give ourselves as a group; they deserve our support.
That night, I couldn't sleep, and about 4:00am, I crawled out of bed, and began writing, rewriting, and completing a 5 page email that I sent out to the patient mailing list from the Patient Forum (this is the first, and last time I have or will ever 'hijack' a mailing list, and doing it the one time took a lot of thinking through before I decided to do so), pleading with the people I could reach to get involved. The CSA almost immediately supported me, and in partnership of the local Arthritis Society, Sheri Dimond at the CSA, and later Kelly Martin at The Arthritis Society, got behind me, and lent their support.
October, 2008, we held our first Support Group Meeting. We had a great turnout, and have kept the meetings running since, with a couple cancelled due to bad weather, or in one case where only a Friday was available for the room booking, lack of interest. Since then, we've moved to our now permanent location at the Central Lions Senior Recreation Center. We are seeing 8-10 people at each meeting, with a few faces changing, but mostly a core group, who come to offer their support, for which I am grateful! In the beginning of March this year, the CSA invited me to join the Board of Directors, and we joined the Support Group to the organization as the beginnings of the Alberta Chapter. Since then, the CSA has been fantastically supportive, and as we move forward, I hope we are able to accomplish much!
From March until July, I had been pushing myself hard. There are so many people out there who need our help and support, and the uppermost things in my mind at all times are the people who might not make it out of that deep, dark pit that I crawled tooth and nail out of, and the people that we can help with early detection, so that their lives need not be so radically affected. In particular, one of my personal areas of interest is children, educating them, and hopefully reaching those that are afflicted with this debilitating, life-stealing (not just quality of life, but life - don't let anyone tell you that arthritis doesn't kill. It does. According to a 2003 Health Canada Report, "Arthritis in Canada - An Ongoing Challenge" - In 1998, arthritis or related conditions were reported as the underlying cause in 2.4 deaths per 100,000 in Canada, making arthritis a more common underlying cause of death than melanoma, asthma or HIV/AIDS, especially among women. Besides complications from GI tract issues and circulatory issues as a result of treatment, we now know that Arthritis also causes varying degrees of inflammation in the body's major organs - enough of these, and it becomes cla**ified as Lupus, another of the 100 diseases in the Arthritis family), life-altering, and depressing disease.
On September 3, 2009, I had my first Humira shot (the journey to get to the shot is one that would double the length of this post). I will be taking things easy until February, and therefore have resigned from the CSA Board of Directors. I hope to become involved again in helping my fellow Survivors. As of October 15th the Humira seems to be working incredibly well, but I need to wait until February to be sure that it's going to keep working, as my experience with Enbrel were that it stopped working after the first 2 months, even with 2 attempts.
I've been lucky in some respects, I've had the opportunity to do some interesting things in my life, with the love and support of my family, not just my wife and Hero, Susan, and the kids, but also from my parents and brother and sister, uncles and aunts, inlaws, and friends. A few friends I've made, some longtime, some not so much, have all meant a lot to me as I've struggled with this, I just want to say thanks to my family, and those friends in particular, for your understanding and support: Mom and Dad, Chuck, Cathy and Murray, Kelly and Christina and the boys, Dana and Chris, Christina, Caroline, Mike G, Mike E, Tina and Tim, Mark, DeVon, Darlene and Jeff, Jerry and Tracy, Sheri, and Kelly, thank you all so much for your understanding, and help. Whether helping me to help others, listening to what I have to say, just having a good time when I needed it, or being so understanding and loyal through all the years, Thank You.
We Patients need support and real help and understanding; as in my case, many patients have had to deal with non-understanding family, friends, employers and other a**ociates and acquaintances who felt that we were taking advantage of "a few aches and pains" to be "lazy". Frankly, I doubt that anyone hasn't experienced this disease either first-hand, or as a loved one of someone who is, would be able to walk in our shoes for a minute, let alone an hour, a day, or a week, let a lone a lifetime.
It's my hope that by sharing with you, that some of you as patients will find some encouragement that you can get through this, and with the advent of recent advancements, perhaps you will find a way to put this disease into remission. If not immediately, be confident that the work continues, and there is a hope that someday there will be a solution for you; eventually, I've come to believe, as I've learned more and more, and watched the research progress, that there will be a cure. No one should have to suffer as we have.
As emotional as the experience has been to write this down, I have to admit it's been helpful to me, and I hope that by having it read, not only will some patients see some hope, but perhaps we'll begin to see some understanding in the public in general. Understanding leads to support, and support leads to improvements to lives, and eventually a cure.
Please, if you can get involved, on behalf of the hundreds of thousands of Spondylitis Survivors, do what you can, and get involved! |
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