Danger - Open Mind

Ouch!

Ouch!  I didn’t realize it had been so long since I last wrote!  Initially I was waiting for word from the Canadian Spondyloarthritis Association and The Arthritis Society regarding getting a support group, and an Alberta chapter of the CSA going, but due to (I assume) summer vacations, it’s been hard to get everyone sitting down except me.  One of the Directors of the CSA has been in touch, and we may be meeting tomorrow, and if not, Monday or Tuesday.  The number one thing in my mind is getting that Support Group started.  I know that I could use it, and from the pain, tension, and frustration I heard at the Forum from other A.S. Survivors, I know I’m not alone.  I haven’t had any luck finding suicide rates among Ankylosing Spondylitis patients, but I’m sure we could have prevented some over the last 10 years if such a group existed here.  The fact that we have some of the most respected researchers for Arthritis in general, and A.S. in particular, and have no support group or fundraising for these folks, just blows my mind.

On the other front, I’m going to schedule in my calendar, three hours a week, to devote to writing - blog, the novel I have been writing and am stuck with writer’s block on lately, a long forum post, whatever.  Stick with me if you can

Getting Involved in Local Spondyloarthritic Support

This weekend, Susan and I attended a Patient Forum on Spondyloarthritic treatments, issues, and awareness.  We learned a lot, and came away with some things to think about.  What struck me most, was the number of people who need a support system here in the Edmonton area.

So much so, I wasn’t able to sleep all saturday night and sunday morning until I put something together to send out to the patient email list that they confirmed us for the event with.  I had asked for just a couple minutes of microphone time - this was supposed to be a patient forum, after all - to raise the idea of having anyone interested in forming a local group sharing contact information.  Well, in a very deft show of agenda control, the moderator of the last panel of the day pretty much skipped over this and another request.  I’ve written this up, and around 8:00PM tonight, I sent it out.  Already, I’ve had responses, so I’m very encouraged.

In the near future, I’ll be writing more on specific issues that arose, such as the inequity of  treatment of Ankylosing Spondylitis and other Spondyloarthritic diseases, and the need to educate the public on the reality of arthritis, it’s effect on people and their quality of life, suffering, and the impact on our society in very real terms of governmental budgetting.

In the meantime, here’s a copy of the email that I sent out, in the hopes that anyone reading this in the Edmonton area that wishes to get involved, lets me know so we can begin the process of pulling together a support group for AS and other Spondyloarthritis Survivors.

To: <Patient List>

Subject: A Local Problem - 2008 Edmonton Spondyloarthritis Patient Forum

Hello to my fellow Spondyloarthritis Survivors, Spouses, Practitioners, and other interested Citizens,

My name is Kevin Shubert, and I was in attendance at yesterday’s National Patient Forum for Spondyloarthritis at West Edmonton Mall.  I was the gentleman who originally raised the question with Ms Beth Kidd, Director of Public Affairs with The Arthritis Society’s (TAS) Alberta and Northwest Territory’s Division about what actions TAS was going to take in order to raise public awareness of Arthritis – including, of course, our subset of the family of the disease.  

I am an Ankylosing Spondylitis Survivor, am married with two children (my wife, Susan, is my personal hero for her support and being as able as she has been to deal with our situation as a result of this disease), I turn 40 this month, and was misdiagnosed from age 13 until 26. I have not been responsive to biologics and trial protocols, and personally fight day-by-day, and hour-by-hour, and like many of you, have been searching for local means of support, and a way to help champion our cause.

I beg your pardon for sending you this email unsolicited, and for it’s length  - but as members of our local community of Spondyloarthritis Survivors,  I believe that we share a concern that was not addressed during the forum, and I ask merely that you take time to read this email through, and if you are interested in what I am proposing, that you take a moment to reply to this email.

I am writing to you today, because I was greatly moved by the passion, frustration, concerns, and stories shared by many of you at the Forum.  While TAS, the Arthritis Consumer Experts (ACE), and the Canadian Spondylitis Association (CSA) have all done remarkable work at the provincial government and national level on our behalf, somehow, somewhere, we, the Spondyloarthritis Survivors in Edmonton and Area have fallen through the cracks.  We are thankful to these organizations for their work, but just as they advocated physician input into governmental medication funding decision processes at the forum today, we must all realize that in order to have local support services, we must have localpatient involvement, and a local solution – by their own admission, the CSA is under-represented in the province, let alone locally. Email queries to TAS have indicated that there are no local patient support programs for Spondyloarthritis conditions outside of the Arthritis Self-Management Program.

It seemed obvious to me, hearing my own frustrations, concerns, and experiences mirrored by many of you, that we are lacking local support services in the form of patient support groups, information sharing, issue discussion, local practitioner information, alternative treatment options and experiences, public education programs, and many other services.  As one lady from CSA (excuse me for not remembering her name) said in response to my question and another lady’s follow-up question of the same nature, in part, “This is MY disease”. Well, this is OUR community, and we are the patients and spouses who, I believe, must start organizing locally, in order to ensure these services are provided. Many of us are suffering and struggling individually, where group support would be of immense help to us.

I had asked for a few moments to speak, as I felt we had an opportunity to begin gathering local contact information for people who wanted to get involved – however, (I assume) due to time constraints, in a rather deft display of agenda control, the moderator of the “Ask The Experts” panel referred to my request and one other simply as “two notes from Kevin and Donna about how to get involved” - I feel that we had an opportunity that should not have been wasted to gauge the support for beginning a local movement of some sort to meet the needs that became evident we as local Survivors felt were not being met, and ask for anyone interested to share contact information to begin the process – I was very clear in my request, and volunteered to speak and take the lead on getting things moving, beginning with gathering contact information.

Unfortunately, I am also aware of a number of Spondyloarthritis Survivors who were not aware of the Forum, as I am sure we all may be, and that are not aware of resources and alternatives that may be available; they, too, are in desperate need of support from their fellow Survivors.  These same people, like myself and many of you, would like to get more involved in patient advocacy, fundraising, raising public awareness, and offering support to our fellow Survivors.  Unfortunately, while the groups such as TAS, ACE, and CSA are doing a wonderful job on our behalf in other forums, locally there is little or no awareness of their work in the patient community (let alone the general public), and no organization of the localsupport services we so desperately need.  With the Survivors who have not yet been reached, and the projected increase in cases in the near future, the need to disseminate information will only grow.  As will the need for more patient-to-patient support -  I know that many of us would have much more success in our daily battles with our disease, with fellow Survivors at our sides.  I also believe that because of the impact this disease has on our spouses and families, that they are in desperate need of support as well.

Although biologics and funding were discussed in great detail, we also need to keep in mind that while these work for a great deal of people, they still do not address the needs of many of us. Where they are a viable alternative, many of us would benefit from an exchange of views and information with patients who have tried these treatments. I also strongly believe we should not lose sight of “The goal of a cure, one where these medications are not needed”, to paraphrase another speaker today.  Future generations need not suffer as many of us have.

Instead of writing reams of paper on the problems that are not being addressed in the Edmonton Area, I would instead like to propose that those of us that have an interest in forming a local organization to address those issues, get together to form this much needed support group.

While we would have much to discuss in regards to our common goals, I would like to put forward that we would have the aims of filling identified local gaps in local support services and participation of:

• Providing support to fellow Spondyloarthritis Survivors, spouses, and families via regular meetings, newsletter, web page information and resource sharing and electronic forum, personal networking (support “buddies”) and other means, tailored to Edmonton Area needs.  Spondyloarthritis conditions such as Ankylosing Spondylitis are not just a physical battle, they are a mental battle as well – severe depression is often experienced hand-in-hand with the physical symptoms, and often extends to immediate family members. Having group support greatly increases success in dealing with our disease.

• Wherever possible, invite and include expert practitioner involvement in regular meetings for informational segments.

• Organize and participate in increased local fundraising and public awareness events for The Arthritis Society, as well as wherever possible directly to SPARCC and local researchers internationally recognized leaders in their field, such as Dr. Walter Maksymowych.  Also would be included efforts to educate the public on additional means of financial support to ad-hoc donations, including directed donations to The Arthritis Society via The United Way’s employee contribution program (available at many employers throughout the area), Planned Gifts, Corporate Gifts, and other means of ongoing financial support.  

• Of utmost importance is to emphasize that Arthritis is not simply “aches and pains”, and that our livelihoods, quality of life, and daily pain and suffering are just as deserving of research funding, support, and societal understanding as any other disease.  Recognition of the role of chronic pain and depression in this as in any other serious illness, and the need for support of patients and spouses, must be communicated.

• Involve local media in such events, putting a human face and experiences to a very misunderstood disease, and in particular, our subset of the family of diseases, and educate the public on early detection and treatment. (I’m not camera or public speaking shy, and from what I heard at the Forum, many of you are not shy about speaking up either!)

• Educate our group’s members on effective advocacy – who to write or talk to, when, how, and  where – including a list of questions or discussion points for discussion with Provincial and Federal Members (or candidates during election times), and where to access resources for factual medical and economical statistical information in order to make rational, persuasive arguments for patient equity in treatment, a reasonable quality-of-life and ability to be a contributing member of our society.  Many of us are eager to get involved, but need help in getting started.  In turn, we would educate the public on how to get involved as well.

• Get the word out – let local Survivors and their families know that there is a group for patients, by patients, via mail-outs to practitioners and health care service units, public education, strategic advertisements, internet presence, fund raising, media involvement, and so on.  Instead of waiting for patients to come to us, find ways to get to the patients.

• Network with other Spondyloarthritis Support Groups to share information and coordinate efforts wherever possible, specifically on meeting local, direct-to-patient, for patient, by patient, needs.

• When necessary, ask the tough questions regarding issues, local programs, and services pertinent to Spondyloarthritis Survivors.

• Obtaining program grants and funding, or fundraising to support our group’s activities.

Granted, there will be a lot of work involved to get such a group off the ground.  At this time, I am only asking for your indication of support, and if there is enough, I will volunteer myself and involve anyone interested in setting up meetings, organization, activities, and obtaining information on availability of program support and other issues for us to consider in our decision making as a local support group, and getting us moving – a solution starts with us making  a decision to make it happen.

I thank you for taking the time to read through this email,  and look forward to any responses, questions, comments, or concerns you may have – again, this is OUR disease, and OUR community, let’s step up to the plate and start building the much-needed support structure that current and future Spondyloarthritis Survivors in our area so desperately need.  

My contact information is below, and I urge you to respond by whatever means you are comfortable, as well as forward this email to other Survivors you may know that are in need of these support services locally.

Kevin Shubert

“I am not afraid to keep on living”

Email: kevin.shubert@gmail.com

Phone: 780-240-9544

MSN Messenger: kevinsh1@hotmail.com

Someday there WILL be a Cure! Donate to the Arthritis Society Today – Visit http://www.arthritis.ca

Getting Involved

A few weeks ago, I recieved an email from the Arthritis Society’s Alberta/Northwest Territory’s division, asking for patients who wanted to share their stories.  I’ve been struggling for a couple of years on how I could get more involved, but the simple fact of the matter is, as I’ve become more and more housebound over the last couple of years, I’ve had a harder and harder time relating to people outside of the house.

The problem is that while other people are living relatively normal, or at least average, lives, outside of what’s going on with Susan and the kids, I have nothing new to ever talk about - I have no new work stories, I don’t have any funny stories about what happened the last time I was out fishing/playing softball/bowling/playing pool or whatever.  Outside of playing World of Warcraft, which most people look at as some kind of “geekish” proclivity - to me it’s a lifeline to the outside world, a way to relate in some way to other people out there in the wider world, I wind up doing a lot of thinking about how I can become more myself again, when my time is virtually taken up 100% with just trying to deal with and survive this stupid disease that’s trapped my mind in a body that doesn’t work.  Weekdays, I make dinner, and most days, this is about all I can handle, and afterwards, I’m out of it for at least a couple of hours.  

This is while I’m on the 48mg Diladuid for pain control.  Before the Diladuid, each day was a nightmare of pain, and each night a never-ending ordeal of needing sleep, not being able to get it, and in the deep dark nights, dealing with a desperation and depression that only the thought of the effect on Susan and the kids kept me from taking one of several ways out of this life - the perceived pain of the jerk of a noose, or a blade on the wrists, for just a few seconds or minutes really isn’t much of a deterrent when you’re in constant agony every second of every day.

I want to be able to relate to people who are or have been in my life, but I don’t know how.  I know there are other people out there like me that need help, and that there’s a cure for this disease waiting to be found; it’s too late for me, whatever cure is found would only stop the disease at the point it’s progressed to, at best, but I wouldn’t wish this experience on my worst enemy, let alone the fears I have for my children becoming affected with this disease, as well as anyone else’s, now, or in the future.

So, after a few weeks of thinking about a response, I replied to the call from the Arthritis Society.  A lot of what I’ve barely touched on in the response, I hope to eventually write on in more detail here in this blog, but for now, as food for thought for anyone who might be reading this, here’s what I’ve replied:

Megan Bailey

The Arthritis Society – AB/NWT Division

Hello Megan

A few weeks ago, I received an email asking for volunteers to share our arthritis stories – I would like to volunteer.

I am an Ankylyosing Spondylitis “Survivor” who first presented at age 13, but was misdiagnosed with everything from bursitis to moving discs, to being told “it’s all in your head” and being put on anti-depressants at the age of 14.  Gym teachers would tell me to “walk it off”, and no one would believe or understand my daily excruciating pain.  At the age of 22, I started presenting more and more symptoms, and wound up seeing virtually every kind of specialist my family doctors could think of – in my growing desperation, I began trying several – except a Veterinarian, or a Rheumatologist.  Various diagnosis’s were made, and all manners of remedies tried or proposed, from anti-depressants, to physiotherapy for bursitis, eventually to considering a corrective surgical procedure for moving discs suggested by an Internal Medicine Specialist.

In 1996, I was finally properly diagnosed by our family physician in Grande Prairie, Dr. Gerald Webb – it’s my firm belief that this was only because Dr. Webb himself was an Ankylosing Spondylitis Survivor.  While education of physicians has improved somewhat, I’m of the firm belief that there Is more education needed in the medical field, not to mention the general public, as to the early warning signs and symptoms of this disease.  Since then, I have run the gamut of physiotherapy, medications, biologics, aromatics, treatment trials, and finally, this year, pain control.  So far, I have been non-responsive to all treatments, a situation research of medical papers regarding Juvenile Ankylosing Spondylitis patients reaching adulthood all indicate is not uncommon.  After a 20 year very successful career in IT Management, 2 years ago, the advice from my doctors was that I should not be returning to work – quite frankly, some of the doctors I’ve seen in recent years are unsure of how I’m even able to keep walking (I use a cane, but I am fighting this disease every step of the way).

In fact, in general, it’s been my experience that there is still a misnomer in that the general public perceives arthritis to be first, “an old person’s disease”, and even so, second, “something a couple of aspirin or tylenol will take care of”.   We need to get the message across that the overall condition of Arthritis can be contracted at a young age, and educate the public in the signs and symptoms to watch for, in order to engage their family physicians as soon as possible – just like many other diseases, early detection means a much better outcome in the treatment and care of the patient of the disease.  Of course, I also believe that there is a lot more that can and should be done in the education of the public on Ankylosing Spondylitis as well as within the medical, pharmacist, and even the educator communities.

I believe that while we are currently seeing some success in the management of the progression of Arthritis family diseases, we must not lose sight of what should be the true goal – a real cure, perhaps in the form of an inoculation or gene therapy.  I believe that the public and medical communities are not fully aware of the life-altering effect of Arthritis – and again, in my particular case, Ankylosing Spondylitis – and the effect on quality of life.  On both compassionate grounds, and on grounds of the economic benefit to our society in general – potential savings in treatment of the disease, should a cure be found, and the cost to productivity of the general economic sector, I believe we also need to increase research funding to this end.  While I am encouraging everyone I know to donate towards the cause, I also intend to urge any provincial or federal candidates to put more effort into funding treatments, as well as funding this research, as well as some funding for some real investigation into the human quality-of-life and economic effects of the family of Arthritis diseases (I have read the current literature available, and I can hardly believe that a +/- ratio of accuracy of 100% when estimating the number of Canadians affected by the disease is tallied was approached in any sort of serious nature).

Nothing I’ve written has touched on the impact this disease has on our families, our economic situations, our employment situations, public understanding, or many many other issues; Megan, there is much, much more I would like to write, and could go on for pages.  I would like to be a voice and become involved in helping in any way I can.  To this point, I haven’t had much of an idea of how I could be helpful as a single person, but I believe if you could draw upon me as an advocate and somehow help me tell my story, I believe I could make a real difference in helping to get people to understand the real human affect Arthritis has, educate them, and help raise funds for research and  treatment, and help bring hope to those of us who are Arthritis Survivors of all types.

Please, don’t hesitate to call upon me at any time via email, phone, or if you use it, MSN Messenger – my contact information is below.  I will also be attending the Ankylosing Spondylitis Patient’s Forum this Saturday, July 5th, at West Edmonton Mall.

I look forward to hearing from you soon, and I hope you’ve had a happy Canada Day!

Kevin

I hope to get a reply - but at the minimum, I think I’ve set a starting point for myself for items that I can write about, and hopefully communicate some of the issues that sufferers of Ankylosing Spondylitis - and by extension, some of the other Arthritis related diseases - face on a daily basis here.

Hydropmorh Contin and Flexoril

It’s been almost two weeks since I last posted. If this is going to work for me as a way to sort out things, I need to try and do more. With the pain of the arthritis, the cold and rainy weather, the first week was a write-off, I wasn’t able to sit at the keyboard. Still, the whole point to putting this blog up is to work through, by writing, expressing myself

Monday, I saw Dr. Parrish. Because the 36mg/day dose of Hydromorph Contin wasn’t working quite as well as we wanted it to, I’m now up to a 48mg dose. I’m also on 10mg Flexoril to help address the tightening of muscles in my neck and upper back, as well as the occasional spasm where my legs kick out, seemingly on their own. Together, they do work very well in controlling the pain…so far. It’s been a real challenge, because they do make me very sleepy and logy, not to mention the additional mental fuzziness and problems with memory. Given the choice, I’ll take the memory and fuzziness problems over the pain, any day.

Rainy Movie Weekend

Well, the weekend’s been rainy and cold, and our internet connection’s been pretty lagalicious, so we hunkered down and watched some movies this weekend (keep reading to see the entire playbill). Occasionally, Susan and I will just start, and keep going, hopping from genre to genre - Susan’s DVD collection is approaching 300, easily Susan generally prefers to see movies at home, where we’re not interrupted by noisy people, cell phones, people kicking the back of your chair, and so on. Most movies, we find, we can wait for until they’re released onto DVD, and if you pick them up at BlockBuster from the previously viewed section, you can get them for as little as $5.00. Compare that to a single movie ticket, at best $9.00, per person…add in popcorn, drinks, driving, and so on, and it’s definitely much more comfortable for us to see it at home.

We have a 42″ LCD HDTV in the bedroom, connected to an XBOX 360 with an HDMI cable, so it upscales the DVDs…it makes quite a difference. Not quite as much as from VHS to DVD, but it definitely is more vibrant and detailed.

I’m including links to the movies on Amazon, in case you haven’t seen these yet, and may want to pick them up. I’m also throwing up my own ratings, out of 5, as they fit into my own personal preferences. (These aren’t in the order we watched them, just the order I remembered them as I made the list.)

On the playbill was:

“The Texas Chainsaw Massacre: The Beginning - Unrated (New Line Platinum Series)” (Jonathan Liebesman)
This prequel to the 2003 remake of “The Texas Chainsaw Massacre” tells us the beginning. As a horror fan, this answered a lot of the unanswered questions - where’d Leather-face’s original “face” come from? What’s with the Sheriff, and how’s he getting away with it? What’s with the family of inbreeds? These questions and more, get some answers. Well-written, good characterization of the teens - and we know they cannot survive, right from the beginning, or there’d be no story afterward - coupled with intensely filmed scenes and some awesomely gory special effects, they create a tension that builds, and sticks with you right through to the end. 4/5
“The Texas Chainsaw Massacre (New Line Platinum Series)” (Marcus Nispel)
Released in 2003, this is an ambitious remake of the 1974 release of the original, which influenced an army of up and coming horror writers and directors and is included in the “must see” list of horror movies for the true devotee. While this movie does depart in some ways from the original story line as well as characterizations, it does a very credible job in not only retelling the original, but making improvements to it as well. The remake, in my opinion, sits right next to the original, on the “Must See” list. 4/5
“Halloween - Unrated Director’s Cut (Widescreen Two-Disc Special Edition)” (Rob Zombie)
Rob Zombie takes on a remake of the original 1978 horror classic. We were a bit skeptical when we saw the trailers originally came out, but Zombie is faithful to the story, but with his own stamp put upon it. We see much more of Michael Myers as a child - from his initial torturing of small animals, through the original murders, on to his time in the psychiatric ward he’s sentenced to. The only possible choice for replacing Donald Pleasance, Malcolm McDowell brings his own flavor to the characterization of Dr. Samuel Loomis, and is far more believable than Pleasance was. Zombie’s stamp on the movie also continues with his choices in visual style - the trademark mask is much darker and gothic, for instance - but not without a believable explanation as to why it would be so. Also sits on the “Must See” list along with the original. 4/5
“The Saw Trilogy (Saw/ Saw II/ Saw III)” (Lions Gate)
Over the course of 2 nights, we sat through the original 3 Saw movies. This is one of the rare cases where an original idea works, and works well - it brings us something new that we’ve never seen, with twists and turns from beginning to end. Particularly satisfying is that the sequels to the original not only continue the story, but improve upon it. Although the sequels are increasingly gory as the series goes on from the original, the entire series is smart, well-written, and original. In the 80’s, it was Friday the 13th and Nightmare on Elm Street, the 90’s it was Scream, and in the Millennium Decade, Saw must be the defining series for the genre. 5/5
“House of 1,000 Corpses” (Lions Gate)
After watching Rob Zombie’s “Halloween” remake, we decided to go back and see his initial works. House of 1000 Corpses was his first film, and while it shows, he does an excellent job of paying homage to horror movies from the 1930’s through to the present; he effectively uses the script and story, visual effects, and set dressing from subtle to overt (a full wall sized painting of The Creature from the Black Lagoon, for example) to do so. It’s a bit on the strange side, and standing alone, really isn’t all that remarkable. It does, however, set up the story for Zombie’s next project, The Devil’s Rejects. 3/5
“The Devil’s Rejects (Unrated Widescreen Edition)” (Rob Zombie)
Rob Zombie’s second film, The Devil’s Rejects follows the story set out in House of 1000 Corpses, beginning with the premise that the police have discovered their activities and whereabouts. The terror they inflict on others is easier to feel as you watch this, and while the special effects are far gorier at times than a lot of other movies, the story line and characterizations have you in the uneasy position of wanting them to get away, before the movie is over. I saw this movie on another “Must See” list, and I have to agree, this is a very well made movie, original, and has an impact on the viewer. 5/5
“American Pie 2 - Unrated (Widescreen Collector’s Edition)” (Universal Studios)
Man cannot live on bread alone, it’s been said, and by the same token, while Susan and I love horror movies, we also like comedy, action, and some drama as well. Having seen American Pie, but not the sequels, we set out to correct that mistake. American Pie 2 picks up the summer after the original, with the return of most of the gang, and Jim’s uncanny knack for finding himself in hilarious predicaments. Eugene Levy is awesome in this series as Jim’s father, and his attempts to be of help just keep the situation staying funny until it’s resolved. This is another rare series where the sequels manage to maintain the quality of the original. Predictable for the genre, the journey from start to finish, however, is laced with original ideas, and is pulled off to great effect by the writers and cast. 5/5
“American Wedding (Full Screen Extended Unrated Party Edition)” (Jesse Dylan)
Jim’s finished college, and we begin the movie with him “popping the question”. Off to roaring start, he tries to make this a wedding to remember, the wish of his bride. Stiffler makes an unwanted appearance, and Jim once again winds up in situations most would die from embarrassment from, but from which he, in the end, winds up better than where he started. Certain points of the movie seem strained, and drag the comedic “bit” on a little too long, or has too much “potty humor”, but overall, it’s a credible close to the initial trilogy. If you’ve seen the other two, you deserve to see how it all turns out. On it’s own, it probably wouldn’t make much sense at all. 3/5

Well, there we go…over the next week, we’re going to be thinking about starting a “Gangster’s Week” - with some of the classics - The Godfather Trilogy, Casino, Goodfellas, Scarface, and so on. Depending on how the weather behaves will determine how many we make it through.

Applying for CPP Disability

Last week, I got some mail from Service Canada regarding the Phsyician’s Report portion of my application for a CPP Disability Pension.

I’d been fighting putting in for this pension for a long time now, as to me, it’s marked a mental boundry between continuing to fight the disease, and giving up all hope of ever returning to work, and in turn, a “normal” life. Eventually, however, I had to consider it; while CPP will (hopefully) send me a disability cheque to help us with our income, it should also be sending cheques for the kids, which I can then turn around and put into an Education Fund for them.

I have 30 days left to file the remainder of my paperwork - some 20+ printed pages are in the application kit - so, I sat down Monday and started filling out the forms. Having the doc fill out his part of the forms was pretty depressing in and of itself - seeing “Unable to work for 15 to 20 years”, in black and white, and signed and attested to by the doctor, threw me for quite a loop. Filling out the rest of the paperwork proved to be almost as bad.

Right now, I’m restricted to lifting 10 lbs, although I can do 20lbs when I need to, for short periods. Walking for more than 30 minutes is pretty difficult, and bending over to do something as simple as tie a shoe is impossible. The pain levels are off the chart, and sleep is a fond memory. On bad days, my body temperature spikes at around 100oC, my shoulders are also affected, the cartilage in my ribcage in my chest is inflamed, my hips and knees have sharp pain, and my hands, as well as having pains in all the joints, swell up like sausages.

Right now, I’m on 200mg Celebrex for the AS itself, 300mg Welbutrin XL for pain control and chemical depression (chronic pain over a number of years affects the chemical balance in the brain, should be no surprise to anyone), and 12mg Hydromorph Contin 3 times a day, for a total of 36mg. Hydromorph Contin is 8 times the strength of Morphine, and 3 times the strength of Heroin.

At current dose, I’m still experiencing a fair amount of pain, but at least I can get out with the family once in a while. Taking the dose higher might reduce the pain, but at this point, I’m already having problems with mental “fuzziness” and memory loss - short term memory, especially for detail, is not something that comes easy any more. Driving is definitely out while I’m on the stuff.

A higher dose might reduce the pain further, marginally, but the cost in brainpower - the only “power” I have left - isn’t worth the cost.

The CPP paperwork asks a lot of questions, and while I was certainly aware, in bits and pieces, of how bad this disease has affected me physically, mentally, emotionally, and how it impacts the family…having it all spelled out in black in white paints a very bleak picture. Right now, all I can do is keep on doing what I have, and hope that a new trial treatment or two might become available, or something else hits the public market - we’ve tried virtually everything, including the injectable biologics like Enbrel, to no effect.

Hanging on is what I’ve been doing for most of the last 12 years, and looks like it’s what I’ll be doing most of the foreseeable future. The only things keep me going are my wife and kids, and the hope that when this disease “burns out” sometime more or less around when I turn 55, that I’m in some kind of shape to live some kind of life in my remaining years.

Until then, I’ve tied a knot in the rope, and I’m hanging on.