Life is an Adventure Race

Moving South

2010-08-18T11:20:00.000-07:00

Nothing like moving your worldly possessions a few hundred miles to make you realize what is important in your life. Hold each item you own in your hands one by one and ask yourself, "is this worth paying a moving company to relocate?"

Feels really, really good to downsize and clear out items that have been hiding in corners.

Who needs a breadmaker when one has two hands and a love for the feel of bread dough between her fingers?

Who needs a mixmaster when one has a whisk and large mixing bowl and loves to feel egg whites forming a peak?

And this self-proclaimed bookworm cleared out the library to make room for new reads and new adventures.

Looking forward to living in North Vancouver with the Pacific Ocean in my "front yard" and the north shore mountains in my "back yard."

SCUBA dive shop picked out, mountain bike trails scoped out, and kayaking destinations on the map. Can't wait...

See you on the trails,
Barb

Cumberland Countdown

2010-06-16T09:01:00.000-07:00

Training has begun for MOMAR Cumberland in September. I missed my mountain bike over the winter, let me tell you. I'm hopeful the crash en route to last fall's Cumberland race didn't damage the frame and render my bike useless for off-road riding. I will have to have my favorite local bike shop (Ruckus Skis, Boards and Bikes in PG) give it the once over to see if it will survive off-road training and the race itself.

Missed my trail runners, too. Feels good to be moving. My ribcage and spine are not happy but I'm going to hurt anyways so it might as well be from training.

See you on the trails,
Barb

Seven years.

2010-04-21T08:43:00.000-07:00

Yesterday afternoon I wrote the last final exam of my undergraduate career - fingers crossed I passed everything.

I wrote all of my exams at the Disability Services Centre - having inflammatory arthritis means the fingers don't always work as well as they should so part of my accommodation was the use of a computer for exams. Writing at the DSC also allowed me the chance to go for leg stretches to ease any stiffness that can occur while sitting for a three hour long exam.

As my cohorts wrote the exam in the evening - I feel for anyone who has to write a 6pm exam - in order to maintain exam integrity I was "held" at the DSC until 6:15pm which meant hanging out with the amazing ladies who work at the DSC for the very last time. I'll miss these ladies, let me tell you. They have been my advocates for disability awareness, my shoulders to cry on when I needed support, and my friends when I needed a laugh. I could not have completed this degree without them. Thanks ladies!

Seven years. Well eight if you count the year off I took while working for the BC Conservation Corps and subsequent winter semester taking anthropology and archaeology courses for self-interest as I missed all of the fall semester prerequisites. But really it's been seven years.

Earlier this academic year several of the degree programs at UNBC underwent an independent review and student feedback into our degree program was welcome. I joined several of my cohorts from the fish and wildlife program as we expressed our concerns and offered suggestions on how the program could be improved. During this session one of the facilitators asked how long it took us to complete our degrees - four years? Five years? Six years? When he asked "over six years?" I put up my hand and there was laughter around the room. Seven years??

Seven years. Why did it take me seven years to do a four year degree? I responded with "because I am a student with a disability." The room fell silent.

I started my degree in the fall of 2002 - just 7 months after having had major surgery, resigning a position that was going to be cut during downsizing, selling a house and moving a thousand miles back home. And because of the nature of the surgery, I was still dealing with a healing incision when I started classes.

When I started my degree I was aiming to go to medical school - I had undergone so much medical trauma it seemed like a good fit. I spent three years working on an undergraduate biology degree and doing pre-med courses before I realized my desire to be a doctor had more to do with my needing to understand what I'd been through than it did with my needing to be a doctor. I did a lot of soul searching and switched to the NREM program as I feel happiest outside.

The switch added time to my degree as I had to back up and take some first year NREM courses in order to move forward in that degree. The fall I did the switch to NREM was also the fall I underwent what became round of major surgery number four. Imagine what it's like to have to put all of your classes on hold in the middle of a semester (four weeks before finals) because the day surgery your surgeon expected ended up being major surgery complete with four days in hospital on high doses of morphine and codeine for pain management. A massive internal abscess had developed in my pelvic cavity possibly due to an infected stitch from the surgery in 2002.

I spent that winter walking around with a surgical drain clearing out the abscess while it healed. And I had to finish the fall semester coursework (midterm, lab final, term paper, entomology collection, four final exams) while working on 4 winter semester courses. I'm still not sure how I pulled that off, other than I know that is the year my GPA took a shot in the leg that it never really had the chance to recover from.

As I moved forward with my fish and wildlife degree my arthritis became progressively worse. Higher levels of fatigue, pain and stiffness followed me for the rest of my degree, including a stretch in the fall of my final year where I needed a cane to get around.

Seven years.

During my reflection at the DSC yesterday I reminded myself of the winter of 2001 where a surgeon hovered over the gurney I lay on in the ER of Victoria General Hospital and told me (a) there would be a 30% chance I'd have a permanently disabled right arm from the blood clot (b) I would undergo surgery to remove my large intestine to "cure" the ulcerative colitis that was killing me (oh, good, an ostomy appliance AND a disabled right arm) and (c) as they could not find a match for my blood type if anything went wrong during surgery I may not wake up as they could not give me transfusions - too high risk for a transfusion reaction.

Since then I've had some incredible jobs (still have friends who jokingly call me the "media star" from several summers on the radio, tv and newspaper doing fire reporting and bear aware), ridden some amazing horses, laughed with good friends, trained for and competed in my first (of hopefully many) adventure races.

This year that non-disabled right arm carried the Olympic Flame, signed the application form which resulted in my acceptance as an international member of the Explorers Club, and, on May 28th, will accept my parchment from UNBC.

To the Class of 2010, I wish you all the best as you move forward into the next phase of your lives. I'll miss you and think of you often. Hope you keep in touch.

What's next for me? At the moment the quest is for a paycheque to have an income again.

Long term? I have a long list of places on this planet I want to explore and hope to start planning my first expedition soon.

For now? Rest. My brain and body are tired.

It's been a very long seven years.

See you on the trails,
Barb

The Explorers Club

2010-04-14T19:12:00.000-07:00

In the midst of this past winter's no-I-don't/yes-I-do have Ankylosing Spondylitis drama I fired off an email to the Canadian Chapter of The Explorers Club asking how one becomes a member. Go big or go home, not going to let this disease nonsense stop me and I need big goals to work towards so why not working towards one day carrying the flag of the Explorers Club?

First, a bit of history. The Explorers Club is a private multidisciplinary organization dedicated to field research and preserving the instinct to explore. The EC has a long history of exploration firsts on the planet and many of the people whose books I've read and documentaries and television specials/series I've watched are members of the EC. These members have inspired me to pursue my own instinct to explore.

The Canadian Chapter introduced me to a sponsor who would help me work on my application package and I set off to work on my CV.

I haven't done a lot of exploring yet - the past 20 years of medical challenges have kept me pretty much on close tether, not to mention a full-time university science degree course load. But I am in a field based program and have had some field experience, presentation experience, and have done a lot of technical writing for school and work, so, at my sponsor's suggestion, I emphasized that side of my background.

I applied under the category of Associate Member as I felt with my lack of exploration background that category would be the best fit. With sponsor letter and application complete, I mailed the application off at the end of January and waited patiently for the next Board Meeting when membership applications would be processed.

On March 24th I received an email from the Canadian Chapter's communications director welcoming myself and other newly appointed EC members to the Club! To say I was thrilled would be an understatement! I immediately fired off an email to my sponsor to say thank you for his support and am eagerly looking forward to raising a glass with him in thanks.

The following morning I received an email from the BC/Yukon membership director welcoming the new members of the EC. There it was in print:
As an International Member, Barbara Durau, Prince George,BC.

International Member! I couldn't believe my eyes! I was expecting Associate! I fired off an email to my sponsor expressing my delight and surprise at this membership category. He reminded me my application made mention to the challenges I had been up against and he told me the Board took notice of this.

Membership in the EC, he told me, is not solely about amassing a list of "accomplishments." Members of the EC tend to have a different outlook on life than other people and as such they tend to look favorably upon those who have been knocked down hard, get back up again, and keep moving forward. His final words to me were "keep going!"

I don't have words to express how it feels to have a group of complete strangers on the other side of the continent look at a six page snapshot of my life and deem what I have been up against and overcome to be worthy of full membership in a very prestigious organization. It's as if, for the first time in twenty years, I've been accepted into a group of people to whom I don't have to explain myself. They know adversity, they know physical hardship, they know. They know.

Spending the past 20 years trying to explain to people to whom adversity is a barista taking too long to make a latte what it's like to hurt to take a breath, to walk a step, to write an exam numbed on pain meds, to be told you've lost mobility...

Explorers know, man. These are people who've faced frostbite, the bends, the thermias, the depths, the heights, the winds, the rains, the blazing sun, and gotten back up and done it again and again and again. Why? Because of that driving passion to keep moving forward, to keep exploring, to make that next discovery.

And now I am part of that "family." I'm not going to lie, I walk a little taller these days.

And you want to know the really cool part? Watching tv or perusing the shelves of a bookstore and seeing works done by men and women who are now my colleagues. That my friend is the cool part. It will be even cooler when I join them at ECAD, the Explorers Club Annual Dinner, held every March at the Waldorf Astoria in New York. Looking forward to hearing and sharing stories of exploration and, hopefully, meeting some of the people who inspired me to send off that application form.

Until then, I have final exams to write, convocation to attend and my own expeditions to plan.

Where oh where shall I go first....?

See you on the trails,
Barb

Four weeks until final exams!

2010-03-16T19:41:00.000-07:00

Suddenly the crunch is on! Four weeks until my last round of final exams (G-d and hard work willing.)

Before then, two group projects, countless assignments and two, no make that three presentations. It's getting hard to stay focused with the "end" so near.

What am I going to do when I graduate?

That is the million dollar question. I have a very long list of things I'd like to do:
SCUBA,
mountain climbing
adventure racing
kayaking
hiking
backpacking
photography
reading books with plots
travel
and more...

Hopefully the new medication will happen and will work and I'll finally have some rest from the pain and stiffness and be able to trail run and mountain bike and all of those fun outdoor things I have had to ease back from because of an unwilling ribcage.

"Hope springs eternal in the human breast."
Alexander Pope

Here's hoping.

See you on the trails,
Barb

Mental toughness

2010-02-16T19:19:00.000-08:00

Been watching coverage of the Vancouver 2010 Olympic Winter Games. Fortunately it's reading break so time to relax a bit (and hopefully get caught up on...readings).

The AS flare up that I've been fighting now for, oh, forever, goes on and led me back to my doctor's office 10 days ago for pain meds. NSAIDs don't work and Tylenol alone isn't doing a thing so I left his office with a 'script for T3's. The upside? A bit of relief from the pain and an opportunity to start gently getting back into Range of Motion (ROM) exercises and daily walks. The downside? Constant mindnumbing drowsiness caused by the codeine and codeine inspired dreams that wake you up in the middle of the night asking WTF? Some days a gal just can't win.

Where was I again? Oh, yes, the Olympics. Watching ladies snowboarding snow cross racing today. Did I mention I have snowboard boots? Bought a pair a couple of winters ago in hopes of learning how to snowboard. They haven't seen snow yet. Anyways, watching the ladies on the course succumb one after another to the technical course, the jumps, the quality of the snow, and getting back up, dusting themselves off and getting back on course when possible to finish the race. One of the commentators made a comment about "she's using her training in mental toughness." That hit a nerve.

My mental toughness training has been getting a workout lately. It's hard to be in pain all the time. It's hard to stay upbeat and optimistic when you are in pain all the time.

It's hard to listen to pep talks from friends who, while they mean well, may not realize how devastating telling someone with a lifelong incurable disease things they should be doing to feel better. Trust me, it's been tried. Things that don't help the cause don't stay around long. Be a shoulder I can cry on, vent to, ask me what I NEED to help me. Or just be politely quiet and wait for me to ask. Give me advice and I get defensive and then I don't want to mention my pain and stiffness for fear I'll get another round of "well, didn't you try the....?"

It's hard to plan ahead. I'm so close to being done my degree and facing the next step. But how do I take that next step when I'm faced with a medication that will suppress my immune system? I'm living on hopes it will work. And it's dangerous to live on hope because when that hope gets pulled out from under your feet it's devastating.

It's hard to get moving when you limp down the hallway in the morning - one leg shorter than the other because your SI joints are inflamed and your pelvis is shifted. It's hard to walk your 30 minutes when your ribcage spasms won't stop and you have to will your legs to move forward one after the other. Your eyes are focused on the road two steps ahead of you for hazards that may make you fall on your ass because to someone with AS falling on one's ass on an icy road is devastating.

It's hard to wait for that magical time of the day when the morning stiffness wears off. Usually when you've been awake and moving for a few hours. But lately that time of day is shifting later and later towards the evening. That means being mentally tough longer and longer. That is exhausting.

I'm tired.

Mentally tired.

My mental toughness needs a vacation.

OTR092-0123

2010-01-16T09:38:00.000-08:00

Almost a year ago I entered an RBC sponsored contest to become an Olympic Torchbearer for the Vancouver 2010 Olympic Torch Relay.The contest asked entrants to make a pledge to "Create a Better Canada." My pledge was to become more physically active in hopes of inspiring friends and family to become physically active. By choosing a more physically active lifestyle, one improves their overall health and fitness and starts making healthier food choices and reducing some of the burden on our health care system. Physical fitness also causes one to be more aware about the food they eat, the water they drink, the air they breathe and one becomes more active in their communities to make sure healthier choices are available. One also becomes more aware of the ecosystem they live in and starts to make choices to protect and improve parks and open spaces to ensure there are places to be more physically active outdoors. If more people make those kinds of choices, it can lead to more sustainable communities.

In mid-May my cellphone rang. It was the national media coordinator for RBC congratulating me on being pre-selected as an Olympic Torchbearer!! My name was chosen out of tens of thousands of entrants. I cried! They loved my pledge and I was asked if I wanted to participate in an RBC media event in June. I said of course, I've done lots of public speaking and media work in the past so had no concerns with taking part in such an event. I was sent forms to fill out and waited patiently for my paperwork to go through so I would be an official Torchbearer.

In early June I received a phone call from the western media coordinator for RBC congratulating me on being selected as a Torchbearer - the paperwork had gone through, it was official. I cried again. The media event was set for the week of June 22nd and I would be contacted by the branch manager of the main branch of the RBC in PG to confirm details.

On June 24th the branch manager called. I cried again. The event was set for Friday, June 26th in the afternoon with an interview with the local television station at 9:30 in the morning. As my car was not-drivable, I rode my mountain bike to the interview - I explained to the bank manager about my car, about my pledge (which I was honoring) and about the adventure race I was training for hence the bike. We did the interview with CKPG, I was presented with a jacket from RBC and an RBC Olympic Torchbearer scarf.

Spent the afternoon with friends and then headed to the bank for the event. The branch manager arranged a taxi to pick up my mom and bring her to the event too. I was introduced in front of a bank full of guests - the Mayor of PG, members of City Council, Olympian Anne-Marie Lefrancois (with a replica of the torch!!), local media, my mom, friends, RBC staff and guests. Interviews for local newspapers, photos with the Mayor, photos with mom, photos with friends. Cake. Smiles. A great day!!

In December I received my email from VANOC welcoming me to the Olympic family (cried again) and informing me of where I would be carrying the Torch on January 29, 2010. I had hoped it would be in Prince George, I was assigned to Valemount - a village in the foothills of the Rocky Mountains. At first I was saddened at not being in PG, but then realized I had the honor of carrying "Athens" in a small community in the Rockies that normally doesn't get to participate in events such as this.

Christmas Eve I come home from work to find a parcel from "The Olympic Store." My offical Torchbearer uniform had arrived. I cried again.

Today I paid for my torch. 12,000 torches were made by Bombardier and were offered for sale below cost to torchbearers to allow us the opportunity to keep a piece of Olympic history. I was happy to learn as many recycled materials as possible were used to manufacture the torches. The confirmation email from the Olympic store made me cry again. I am so honored to be part of this.

On January 28th I will be attending an RBC sponsored event in PG where I will meet other RBC Torchbearers in the area. Looking forward to saying hello to the PG branch manager who coordinated the event in June - he was selected as a Torchbearer too!

On January 29 my mom, good family friends and I will be making the journey to Valemount - approximately 300kms east of PG and, depending on the weather and road conditions, a 3 hourish drive. I'm hoping other family members can join me, but I understand the distance may not make that possible.

At 7:45pm I meet with officials and other Valemount torchbearers.

At approximately 9:05pm I carry the flame.

OTR092-0123. Olympic Torch Relay Day 92, Torchbearer 0123. That's me.

See you on the trails,
Barb

Oh yes it is.

2010-01-15T14:00:00.000-08:00

Saw a rheumatologist this past Monday. Specialist in arthritic disorders. He was actually the very first "rheumy" I saw 18 years ago - doubt he remembered ;)

He took my history and then dug out his measuring tape and Sharpie and gave me the arthritic once over. When he was done, he told me that not only is it Ankylosing Spondylitis, but that I need to be on prescription anti-inflammatories every day. Why? I've lost some range of motion (ROM) in my shoulders, axial spine and lower back and my ribcage is at the abnormally low end of the expansion stage. In other words, when I take a deep breath, my ribs don't move. Makes running difficult, trust me.

Ah, I tell him, but I've been on all of the NSAID's - and I rattle them off - and they don't work. So I'm now on Mobicox for a few weeks and then another for a few weeks and then he'll start me on Enbrel - an anti-TNF biologic that will suppress my immune system and, hopefully, stop the inflammation, pain and destruction. That's the plan.

We did a thorough once over of my spinal x-rays - I looked over his shoulder, it's allowed, it's my spine! "The problem with women," he says jokingly, "it takes longer for their spines to fuse." Which is why it's there but not on the x-rays...yet.

Devastated doesn't come close. First a confirmation. Second hearing I've lost mobility due to this disease. Third the knowledge I've reached the biologics stage of treatment and will be suppressing my immune system.

It's like I have to learn to cope all over again. Doesn't help this past few weeks I've been ramping up for a major flare-up. My ribcage is in spasms, my back is in spasms. It hurts to breath, to sit, to move. And the fatigue caused by the inflammation and the disease process has me wiped out.

I'm fortunate to have amazingly supportive friends. Couldn't do this without them.

So now I have to rethink a few things. Still want to do MOMAR this fall - need a fitness goal to work towards as fitness and exercise is so important when living with AS.

I'm tired. It's been a long, hard, 18 years. Hoping the Enbrel gives me some relief.

Until then...

See you on the trails,
Barb

Counting down to the end, part one

2009-11-30T18:21:00.000-08:00

The last week of classes is always the hardest. Your brain is done. Done. But there are final papers, lab exams, presentations, problem sets. Did I mention my brain is done?

One item off the list at a time. And time to start looking forward and planning life post-academia.

On the list? SCUBA!! This January I will start the e-learning portion of the PADI open water dive certification. Then off to a dive shop - no easy task when one is landlocked in the middle of the province - and the certification portion. Woot! Altitude diving, National Geographic Diver, ah, it's a long wish list.

Mount Baker!! One of my best friends from high school is planning on an ascent of Mount Baker in July and has invited me along. Will be a great chance to catch up, won't tell you how many years it's been other than to say the last time we chatted in person her son was "knee high to a grasshopper" and now he towers over me. It will also be my first summit, which is exciting for many reasons.

When I was initially diagnosed with UC and then with AS (when they thought it was AS) I remember watching a program about a woman from Calgary who had been diagnosed with a female specific cancer - cervical/ovarian - and a major focus of her recovery was exercise and a summit of Aconcagua. When her cancer was declared in remission she went on her quest to summit Aconcagua and completed her dream. I remember vividly the shot of her on top of that mountain and her speaking to how climbing Aconcagua symbolized her conquering cancer - she had reached that summit. I remember at the time thinking, I've been diagnosed with two incurable diseases, I will never reach that summit. I can climb that mountain, but I will never reach that summit. There will always be a bit of mountain left I cannot conquer.

The day I found out I'd been misdiagnosed I remember waking up at 1:30 in the morning thinking "I can climb Aconcagua! I can make that summit!" Mount Baker could very well be the first of many summits.

BOSS - The Boulder Outdoor Survival School in Boulder, Utah. Yes, Utah. Not Colorado, Utah. My goal at BOSS is the two week primitive living skills course at the end of August. Seven days of intensive hands on training in fire making, hunting, lithics, living alone in the wilderness, walking lightly on this planet. Oh, and no tent, no stove, no matches, no toilet paper, no dehydrated food (unless you count things like lentils), no phone, no GPS, no Gore-Tex, no SPOT, no worries. Solo. Alone. Wilderness. Me. Alone. Three or four days. Alone. Me. Wilderness. Can't wait!

Also looking forward to meeting friends. Planning on spending as much time as possible in Utah exploring, SCUBA diving (yes, in Utah), checking out the incredible landscape, taking photos and getting some Utah sunshine.

But first I must finish this semester and next.

Did I mention it's 60 days until I carry the Olympic flame? Excited!!

See you on the trails,
Barb

Lest we forget

2009-11-11T06:53:00.000-08:00

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved, and were loved, and now we lie
In Flanders Fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders Fields.
- John McCrae

So who diagnosed you?

2009-11-07T16:10:00.000-08:00

The question asked by my doctor in my follow up appointment after a series of spinal and pelvic x-rays. I had been through close to 6 weeks of unending lower back pain and spasms and finally went to my doc for some help. He prescribed Celebrex - a COX-2 anti-inflammatory - and sent me off to the lab for blood work and x-rays.

Two days after the x-rays were done there was a voicemail from his receptionist - the doctor would like to see you to discuss the x-ray results but it's not urgent. What do you think I thought? They found something. And I had to wait a week to see him.

By the time it was Friday morning I was beside myself with anxiety over the results. I had myself convinced this is it, there will be arthritic changes in my spine and my life would change again. Well, I was partially right.

Who diagnosed you?

I was diagnosed with Ulcerative Colitis when I was 27 and shortly after was diagnosed with Ankylosing Spondylitis by several members of the medical profession. I took every anti-inflammatory you can think of since then and was even on a mild immunosuppressant for awhile. I had a brief remission when I underwent surgery for UC - possibly due to the high amounts of steroids I was on.

I made lifestyle decisions and denied myself opportunities because I had been diagnosed with inflammatory arthritis. I dealt with the stigma associated with being a person with a disability because I had been diagnosed with inflammatory arthritis. I spent 18 years building an identity around being a person with inflammatory arthritis.

Friday morning my doctor suggested I had been misdiagnosed. After 18 years there were no arthritic changes in my spinal column. I have not been on any biologics or strong immunosuppressants, so it's not due to any medical regimen. There were no arthritic changes because I don't have inflammatory arthritis. My ESR - sed rate - was 4, normal is below 20.

My doctor was happy - this is good news! We can treat musculoskeletal pain with anti-inflammatories, exercise and Tylenol. It's not degenerative. He tells me musculoskeletal pain is the second most common issue he deals with in his practice, men, women, short, tall, old, young, fat, thin, it's common. And it's good news!

Yes, it is good news and at some point I will get to the good news part. But first I have to rebuild my identity again.

I don't have inflammatory arthritis. I was misdiagnosed.

I will still see a rheumatologist in January but if there have been no arthritic changes by now, there won't be.

Yes, it is good news I don't have inflammatory arthritis. It is not good news that I still live in pain, but now I have to change my thought pattern to - it's not degenerative, I won't "hurt" myself by exercising and pursuing sports and activities.

I have been given the opportunity to redefine myself again, and this time it's as someone who does not have inflammatory arthritis. I need a new MedicAlert bracelet.

This will take time to get my head around. And I will grieve for those opportunities I denied myself by thinking I couldn't risk it because of spinal arthritis. And then I will be grateful to G-d for giving me a wonderful gift in my final year of university. The world is mine.

Thank you G-d.

Today's episode is brought to you by the letters AS

2009-10-11T10:16:00.000-07:00

Time to bring you up to speed on life with Ankylosing Spondylitis.

The good news is the "cure" for Ulcerative Colitis left me with only one painful chronic inflammatory disease - it was absolutely devastating to deal with two at the same time. I didn't have much of a life for those ten years when UC and AS ruled.

Don't sit if you can stand, don't stand up if you can lie down.

First piece of advice from very first rheumatologist I saw regarding having AS. Sitting is hard enough on the spine for people who aren't inflicted with spinal arthritis. It is brutal on those of us with AS. There is a tendency to stoop forward to relieve the pain - which can lead to a permanently hunched posture if your spine fuses in that pose. That is the challenge of AS.

Unlike other forms of arthritis, the inflammation of AS causes the tendons and ligaments that hold your spinal structure together to turn into bone and fuse your vertebra together. Once that happens you lose mobility and your spine is at a greater risk of fracture. I have a spot or two in my spine where this is happening. The good news is once the fusion happens the pain is gone. The bad news is once the fusion happens there is no unfusing and your mobility is gone forever.

Fortunately, for me at least, AS responds very well to exercise and I have to make that commitment to keep moving. Move it or lose it. The reality is tendons and cartilage do not have a blood supply so the only way to get nutrients in and waste products out is movement - forcing the issue as it were. The real challenge is moving when you are in pain. AS causes pain. Exercise can cause pain. There is pain. Rock, me, hard place.

And with the antidepressant I am on because of being in chronic pain for over 15 years I can't take anti-inflammatory medication without risking a bleeding ulcer. And seeing as I can't give blood or get blood - more on this in another post - I can't risk losing any of my hemoglobin. Acetaminophen helps, but it has its risks, too and it doesn't do much when there is a full-scale flare up like last week.

I wrote a mid-term exam lying on the classroom floor.

The downside to being a university student is sitting in lectures. Not the lecture part, for the most part they are interesting and stimulating. It's the sitting part. No such thing as ergonomic seating arrangements at my university. By about mid-October my AS is in full rebellion mode at having to deal with hours upon hours in a chair. Mid-October is also mid-term exam time.

I wrote my second mid-term exam sitting on the classroom floor.

I normally write my exams at the disability services centre - the ladies there rock and are incredibly supportive. However the reality of having a disability - invisible or otherwise - is the first time my profs see me is at the start of the semester when I appear at their offices with accommodation letters to be signed for the DSC. The second time they see me is when I appear at their offices with letters of accommodation to write exams in the DSC - I am allowed extra time and the use of a computer for essay based exams. The computer use is a great help but no amount of extra time will compensate for pain.

This means I am absent from the class during exam time. During the earlier years of classes this is not an issue, there are a lot of students doing similar courses for different programs. However you reach 4th year classes and there are fewer students so it's obvious when someone isn't there. And I always get a bit of 'tude about getting extra time for exams.

So this year I'm taking a different tack for at least a few of my exams and lectures. If I am in pain, rather than suffering silently I will make my situation accommodate me. I'll sit on the floor if I have to. I'll lay on the floor if I have to. I want my cohorts to see what life with an invisible disability looks like. I don't want pity, I want understanding.

I think the flare up is subsiding. I slept like Rip van Winkle these past few days just to catch up on the restless sleep I had during the week when pain had me tossing and turning. And my concentration is returning, which is a good sign considering I have a mountain of homework to do.

Tomorrow I start training towards running a 10k in February as my contribution to the Iceman. It will feel good to get moving towards a goal again, I need that. And I'll start swimming, too.

I want to do a triathlon next summer. And maybe climb a mountain.

See you on the trails,
Barb

If your ass hurts, quit sitting on it and get moving!

2009-10-06T17:47:00.000-07:00

Well beyond the recovery stage from MOMAR and time to get moving again. I can tell because my hips hurt and I'm having back spasms. Curse you AS!

I can swallow pain meds until my stomach churns but by far the best treatment I've found is exercise. Motion, movement, blood flow, oxygen, tissues stretched and strengthened. The curse of being an undergrad - hours spent in chairs hunched over books and journal articles and computer screens. I'm sure the human body was not designed to sit in chairs.

I've a few months to go until the Iceman in February so I can take some time to power walk a good base and start running harder and longer distances. Good thing I have an iTouch with loads of memory 'cause running that track at the NSC is going to get really boring really fast. Ah, but there is always snowshoeing! Oh, wait, we need snow. That will come soon enough.

I love that post-exercise feeling. It's a great sense of accomplishment.

See you on the trails,
Barb

The Good, The Bad and The Ugly - MOMAR Cumberland 2009

2009-09-30T19:44:00.000-07:00

The day finally arrived when the four of us, teams Coast Mountain Sports 1 and 2, packed up our gear and headed south to compete in the 30km Sport Course section of MOMAR Cumberland. 4:30 am, our agreed upon meeting time to pack our gear and bikes, came so incredibly early. I spent a restless night waking up every 45 minutes because I didn't want to sleep through my alarm.

We took the front tires off of our bikes to reduce the weight on the bike rack, loaded our gear bags into the trunk and strapped the bike rack onto the back of the car. It was one of those bike racks that lashes onto the trunk rather than a hitch model - no hitch on my car, hereinafter dubbed "the MOMAR mobile." By the time the bikes were loaded we were excited to be 15 minutes ahead of our scheduled 5:30 am departure time. The goal was to make the 3:00 ferry to Nanaimo in order to have some leg-stretch time in Cumberland in the evening.

At approximately 5:30 am our plans came to a crashing halt when one of the straps holding the bike rack to the trunk snapped, sending the rack and our four mountain bikes crashing onto Hwy 97 S at around 90 km/h. I looked into the rearview mirror and saw sparks.

In our favour? We were on a four lane section of highway so room for transports to move over, no traffic behind us to inadvertently end up wearing our bike rack and bikes, and close enough to a major intersection that there was a street light. We lashed the rack back onto the car and carried on.

A normally hour long journey to Quesnel took close to 2 hours. I was scared to drive beyond 80 km/h and all of us probably did an inner jump whenever there was a bump in the road or odd noise coming from the rack area of the car. We stopped at Wal-mart in Quesnel and two bungee cords were purchased to secure the bikes to the rack more securely and to secure the rack more securely to the car. Onward south we went. The goal still to make the 3:00 pm ferry.

The refueling stop at 100-Mile resulted in more bungee cords being purchased. The rack kept moving, sliding further back on the trunk and straps would pop off and there would be metal clips slamming into the trunk of the car. It seemed as if we stopped every half hour to readjust the strapping and tighten things down. It was in 100-Mile when I also came to the horrible realization that my bike was severely damaged in the crash.

As my bike was put on the bike rack last, it was at the bottom of the pile when gravity brought the rack to a crashing halt on the highway. My derailleur - the mechanical bit that helps shift gears - was bent at a horrific angle, the chain was jammed between the rear tire and the frame, the sprocket holding the back tire to the frame had come undone and the only thing holding the back tire on the bike was the bent frame.

I had that horrible feeling my race was over before it began.

We carried on, only by now had come to the realization the 3:00 ferry was not going to happen and we were now aiming for the 5:00 ferry from Horseshoe Bay to Nanaimo. Problem. Vancouver Friday afternoon rush hour traffic and road construction. We made to the ferry terminal at 5:05 pm and were heartbroken.

Race check-in was scheduled for 7:00 until 9:30 pm and bikes had to be checked and stickered to confirm they were fit for the race. It is a nearly two hour ferry crossing and another hour and a half drive to Cumberland from Nanaimo - which put us well past the 9:30 pm cut-off time. We called the Race Director and were told this happens every year and we sent him a text when the ferry was on the way to let him know we were once again on route. We made race check-in with two minutes to spare.

The cycle shop was still open so after checking in for the race and into the hostel we walked our bikes over to the bike shop. Or should I say I limped my bike over to the bike shop. Needless to say after its pre-dawn crash onto the highway my bike (which I had just purchased 6 weeks ago) was in no condition to race. The cycle shop cut me a deal and straightened out what they could on my bike during the race while I road a rental bike for MOMAR - a full-suspension technical mountain bike. My bike is a "hardtail" - only front suspension.

Four hours of sleep later and we take our bikes to the designated bike drop off and then grab some breakfast before the race. We headed down to the lake to watch the Enduro racers do their kayak portion and then prepped ourselves for the race start at 10:30. Maps for our course were handed out at 9:00.

By the time the Sport Course was started, the calm as glass waters of Comox Lake had changed with the wind and we were treated to a 5 km course that battled winds and tides. It was exhausting and exhilarating at the same time. It was also the first time I'd paddled a kayak - my previous paddling experience had been in a canoe. My partner and I managed to finish in a respectable not last place and we headed off on the trail running portion of our race.

This is when things started to unwind for my physically. 15+ years of dealing with chronic pain from inflammatory arthritis has resulted in me taking an antidepressant. While that has done wonders for my brain chemistry, it has wreaked havoc on my stomach and I battle nausea every day. The physical exertion of the adventure race made that nausea unbearable.

We managed to navigate through the trail running portion of the course with only one slight error in course which was quickly corrected with only a slight loss of time. The hill though, I don't think I will ever forget the hill. It went straight up and didn't stop. It teased you and made you think it was stopping and then it laughed in your face and went further up. And up. And up. And up some more. I barely had legs left by the time we made it to the bike check point. That's when the unwinding continued.

Remember my last post when I commented about not being an athlete? Well, I'm not a technical mountain biker either. I was just adjusting to riding a bike with front suspension and now was mounted on a full-suspension technical bike that was far out of my league. And the tracks were incredibly technical as well. End result was my walking the bike more than I rode and a left calf that looks like someone took a meat tenderizer to it. I'm still not sure exactly where the three inch long, 1/8 inch wide scraping gash over my Achilles tendon happened. That one will take time to heal and may even leave a mark.

By the time we'd pushed/rode/shoved the bikes through to the middle checkpoint I was done. I was frustrated beyond belief with the bike, stressed about my bike and exhausted from fighting nausea the entire time. I was done. Done. My teammate was disappointed but I had nothing left.

Am I upset that I didn't finish? Disappointed but I have to remind myself I just started training for that race 5 months prior and literally went from couch to adventure race in that short time period. The fact I made it as far as I did with the level of fitness I had was amazing considering my medical situation.

Could I have done anything differently? Of course. I think some of the big factors were (a) not getting enough to eat the day before (b) the side effects of the AD (c) not having enough rest before the race (d) not having a strong enough fitness base. These things can be changed.

I think by trying to micromanage my ileostomy for the long drive - the first long road trip in 7 years - I ended up depleting my stores. I ate low residue food and didn't eat a lot because I didn't want to be stopping to empty my appliance a lot - no, you cannot regulate ileostomy output by not eating, in fact that causes all kinds of problems in itself - but by being careful about what you eat you can minimize the number of times you have to empty the appliance in a day. That, combined with a lack of sleep the night before the race, didn't give me a lot of energy to bring forward.

Then there is the eating during the race. I need to keep working on that one and experimenting with different race foods. I know that bars and gels can be risky because they can increase "output" - which means a lot of side treks off the beaten path to find a private log. I have to find out what I can eat during a race to keep my energy up.

All in all, however, I wouldn't trade that weekend for the world. I know what to expect for next year and can be better prepared physically for it. And I really enjoyed being in that atmosphere, surrounded by over 300 physically fit people all with the same goal to test themselves over a grueling course because that's what they love to do. It's addictive and I can't wait to do it again.

Next up? I carry the Olympic flame in January!

Before then, however, the training continues.

See you on the trails,
Barb

Since when am I an adventure racer?

2009-09-28T19:32:00.000-07:00

Being a fan of the "Eco Challenge" of days gone by, I have always wanted to do an adventure race. My main motivation was wanting to be fit and healthy enough to do something that physically challenging. While not of the same scope as "Eco Challenge" when the opportunity to take part in the 2009 series of MOMAR - the Mind Over Mountain Adventure Race - I took it.

I started my journey towards MOMAR Cumberland - September 26, 2009 - in early May with an opportunity through my employer Coast Mountain Sports. CMS was the title sponsor for the 2009 series and gave 18 employees the chance to do a race. I signed up and was accepted - then the search for a race partner and the start of a training regime began.

First, some background to bring you up to speed.

I am not an athlete. With the exception of sports days I participated in back in the late 1800's when I was in elementary school and phys ed classes in senior high school, I was not an athlete. I was never a runner, didn't play team sports in school. My thing was horses so if the sport didn't have equines involved it did not exist in my universe.

I was a "heavy" kid - you know that "big boned" kid who wasn't obese but wasn't slim either, well, that was me. I didn't trim down until after high school and that was more through luck and dietary changes than through any massive exercise regimen - did I mention I am not an athlete?

A diagnosis of Ulcerative Colitis and then a diagnosis of Ankylosing Spondylitis at the ripe old age of 27ish meant my primary means of exercise was running to the toilet, worrying about colorectal cancer and sitting in doctor's offices, going to physiotherapists, occupational therapists...you get the point. I fought UC for 10 years - it never really went into remission so I was always symptomatic and always losing blood. In February 2001 this nearly ended it all for me as I was admitted to hospital with a hemoglobin count of 57 - it was supposed to be somewhere between 130 and 160 and mine was 57. Severe anemia caused by blood loss caused by UC.

I was hospitalized in an attempt to stabilize the UC and then "scoped" to determine how bad it really was. It was really bad - my entire large intestine was involved, a term called "pancolitis" and it had to come out in order to save me. To make matters worse, the IV I was given during the "scoping" procedure possibly caused a blood clot to form in my right arm - brachial vein thrombosis - from my elbow to my shoulder and about to break off to my lungs by the time I was evaluated by a specialist. While rare, it can happen after an IV if a patient is severely anemic, very dehydrated and very very sick with UC. Like I was.

Problem. I was bleeding out of one end of my anatomy and clotting at another. In order to treat the clot, doctors normally give patients medications that thin the blood, that "bust up" the clot. Problem. I was bleeding out of one end of my anatomy and any treatments for the clot would have me bleed out and die. My large intestine had to go in order to give me meds to treat the clot.

After 10 years of fighting UC I was so ready to be over and done with it I was relieved when the surgeon said they were going to remove my large intestine. Finally, I thought, I'd be "healthy" and get strong and be able to be active and not be chained to toilet facilities and be rid of the pain of UC. It is a very painful disease.

In April 2001 I became an ileostomate. Several weeks after surgery I experienced a life-threatening post-operative complication called a volvulus which killed off approximately a foot of my small intestine and resulted in emergency surgery to save my life. In January 2002 I had another round of surgery to make me a permanent ileostomate, revise the stoma created during the surgery to deal with the volvulus and to remove an internal abscess. Between those two surgeries I dealt with recurring abscesses, sepsis, early stage renal failure, issues from being on a "blood thinner" to heal the clot, post-traumatic stress disorder, and on and on and on.

I will wear an ostomy appliance for the rest of my life.

In November 2006 I had another round of surgery to excise an abscess that formed in my pelvic cavity possibly due to an internal stitch from the 2002 surgery becoming infected and forming a sinus (a cavity). I'll spare you the details of where but will tell you it was so painful I could not sit and was on the maximum dose of T3's and still in pain. Four days in hospital post op on morphine and T3's and then three months with a surgical drain to clear the abscess and finally life goes on.

So, what does it mean to be an ileostomate, you may ask? Well, it means I am alive, which is the most important fact of all. It means I no longer deal with the pain of UC, which is great. It means I have to be very careful to avoid dehydration and have to be very careful to make sure I am maintaining my electrolytes. Why? Well, most people think the large intestine has only one real job. While that may be it's main job, it also is responsible for reabsorbing water/fluids from "waste" materials and for reabsorbing electrolytes. While your small intestine does adapt to a certain extent, it does not replace the full function of the colon so fluid and electrolyte loss is a key concern. This is even more critical in patients like myself who have had a blood clot and who have been through early stage kidney failure - get dehydrated enough and either or both of those could happen again.

What else does it mean to be an ileostomate? It means I have to be careful and conscious about what I eat. I have a different waste removal system than you do. My "waste" is collected in a bag stuck to my abdomen and everything that goes into that bag does so through a small hole in my abdominal wall. So if I don't chew my food thoroughly it can get stuck. If I eat really high fiber foods the undigested fiber can get stuck. If I eat popcorn the kernels can get stuck. Getting stuck means small bowel obstruction which means trip to the ER and a LOT of pain. I experienced this due to post-op swelling and it is absolutely painful and frightening. I tend to avoid this. If I don't drink enough water to help food move through my small intestine it can get stuck.

There is a whole new food chemistry one learns as an ileostomate. Some foods cause watery output (output being the technical ileostomate term for "waste") some foods thicken output, some foods cause odor, some foods cause gas and make your appliance balloon like a life preserver, and each ileostomate has to experiment and see what does what.

And then there is the whole appliance issue. It's a bag attached to my abdomen. Fear number one, the bag falls off and I end up covered in "output"/"waste"/crap. Fear number two, I am not able to empty the bag often enough or soon enough and the seal blows and I end up covered in "output"/"waste"/crap. Fear number three, people can tell I wear an appliance (which is unrealistic but one does develop body image issues when one has been subjected to ostomy surgery and every ostomate must work through these issues at some point or another.) Fear number four, I will never find a soul mate (again unrealistic but I'm allowed those fears.) Fear number five, after several years, many manufacturers and a lot of trial and error, the type of pouching system that I use that works and that gives me good wear time will be discontinued.

So, you ask, does being an ileostomate mean you can't camp/hike/run/race/bike ride/ horseback ride/trek/travel/kayak/canoe/portage/play/insert your favourite activity here? Absolutely not! I have to be careful lifting heavy items - 25 pounds is a rough limit due to the number of times my abdominal muscles have been cut and the risk of hernia that causes - but otherwise I can do whatever I want. I just have to make sure to drink clean water, eat clean food and maintain my electrolytes.

The world is mine.

And the way I look at it, I "lost" close to 15 years dealing with UC and issues related to UC. It's time to catch up on those 15 years. This is why I'm an adventure racer - because I can be one.

This is also why I created this blog. Having an ileostomy is a life-long learning experience. Food, activities, particularly if you factor in training and competing in things like adventure races. How do I eat for a race? How do I eat during a race? How do I eat after a race? How do I keep my appliance on during a long exertion like an adventure race? These things I will learn, and many more, and I will share that learning so somewhere out there another ileostomate doesn't have to start from scratch like I did.

Next post, a wrap up of my MOMAR Cumberland 2009 experience.

See you on the trails,
Barb