What's So Difficult About Chronic Illness?

I mean, I would like to think that it's common knowledge that living with chronic illness is difficult. But is it just something we know? Or is it something that we generally understand, in actuality? And do we truly understand that just because something is difficult, or painful, does not mean it's a miserable existence? Chronic illness and chronic pain do not necessarily mean a person is in a constant state of unhappiness. 

I thought I would break it down a little bit, based on my own experience. This is not for sympathy, this is for education and awareness. Do we really understand that the basic, necessary, and innate parts of life that healthy people experience without even a thought about it is often painful for people with chronic illness. A reminder that 'chronic' means it never goes away, and even if you're lucky enough to go into remission, the threat of it returning to fully active disease is always a cloud over someone's head. 

So here it is - from my experience of things: 

It hurts to eat. 

Due to Crohn's Disease, everything I ingest is painful. Some foods/drinks are less painful than others, but literally everything I ingest causes some level of discomfort in my intestines. All the time. 

It hurts to see. 

Due to a Diplopia (double vision) syndrome and Macular Degeneration, my eyes are constantly straining to adjust my vision. The more I focus, the more pain I experience. The longer I focus, the more eye rest and eye drops I need. All the time. 

It hurts to walk. 

Due to Ankylosing Spondylitis, an arthritic condition that started in my SI joints, walking is painful. Now, I get radio-frequency ablation done in my SI joints and my spine to combat this pain, so my pain is a slight twinge instead of severe pain. All the time. When it was severe pain, I was using a cane and then an ambulatory wheelchair. 

It hurts to breathe. 

Due to Costochondritis; inflammation in my ribs, any lung expansion is painful. So deep breathing, yawning, sneezing, plus twisting/moving/shifting/lifting, all of this is painful. All the time. 

It hurts to go to the washroom. 

Crohn's Disease, yet again. Every bathroom break is painful/uncomfortable. Some days are worse than others, some are minor twinges, but it hurts every time. And also keep in mind that 'every time' for some people is multiple times a day. Double-digit times a day. 

It hurts to be intimate. 

This is from previous surgeries, previous adhesions, anatomy, Hereditary Angioedema, and Crohn's Disease. I was diagnosed with IBD a few years before I ever became sexually active, so I have never experienced intimacy that was not painful. A handful of times, if I've had enough alcohol, sometimes my brain won't register the pain during, but it floods in afterwards. It is painful. All the time. 

It just hurts. 

Then, of course, many of these chronic illnesses just hurt sporadically, regardless of what I am doing or have done. Crohn's Disease is one of them. Migraines too. The Ankylosing Spondylitis & Costochondritis. And so many diseases cause constant or near-constant pain. The levels may change and morph, but the discomfort is always there. 

Luckily, our brains are fascinating pieces of biology, and all types of medicine can be incredible puzzle pieces to add to our big picture. With distraction, endorphins, adrenaline, medicine & other therapies, sometimes these pains can be ignored for a short time. This allows us to participate in activities, go out with friends, and enjoy some life in small bursts where we can ignore the pain, sort of. Twinge days are great for getting out and enjoying life. 

Question Mark Disease

Living in the grey area of the medical world can be really frustrating. 

I feel like I've been trapped in this grey area of health since I first got sick. 

Sometimes it's that I have a clear diagnosis but, for whatever reason, I don't respond to the treatment like I should. Or maybe it's that I have a symptom that I *shouldn't* have, or that I don't have a symptom that I *should* have. 

What's been coming to the surface lately is that my symptoms look like a certain disease and I respond shockingly well to the treatment, but the test results come back negative. 

The swelling disorder I have is one of those. 

My tentative diagnosis has always been some sort of Hereditary Angioedema (HAE)... but some of my symptoms were a little off. A little outside the box. So we did some testing. I am negative for all of the currently known genetic mutations for HAE 1 and HAE 2. There is a type called HAE 3, but the genetic mutations are much less known and cannot currently be tested. 

So my current diagnosis is: Idiopathic Angioedema. It is also well documented that I respond well to the medication that treats HAE, so it is possible that I have HAE 3, and if a test becomes available for that diagnosis, I'll be tested for that. 

The running theory, though, is that somewhere in my Complement System, something is wrong, but we don't have the technology or access to figure out exactly where my system is malfunctioning, and since the medication works wonders, we're now sticking with that. Treatment for a question mark disease. 

Then we have my eyes. 

A long history of a diagnosis of rare early-onset Age-Related Macular Degeneration, then changed to Malattia Leventinese, due to my age. In other words: another grey area. 

Too young to have one, and a negative genetic test result for the other (which we just found out). 

So, even though the genetic test is negative, my current diagnosis is still Malattia Leventinese. The thought is kind of the same: I don't have any of the known mutations that cause this disease, so it's possible that I have a mutation not identified as of yet and cannot be tested. 

So you won't find me on any inherited retinal disease list, because they cannot add me with a negative genetic test result. 

So I have to settle in and get comfortable in this weird grey area. 

Question Mark Disease 

One-Size-Fits-All

One of the biggest myths of healthcare is a one-size-fits-all approach. We are led to believe that: 

Bacterial Infection -> Antibiotics

Inflammation -> Anti-inflammatories

Autoimmune -> Immunosuppressants

Cancer -> Chemo/Radiation

Cut -> Bandaid

Pain of any kind -> Pain Meds

Overweight -> Fad Diets

Virus -> Antivirals

Depression -> Antidepressants

Psychosis -> Antipsychotics 

It seems like no matter how many different patients we see - all responding differently to a list of treatments - we still hear and see the same judgements: 

"If this treatment doesn't work for you, you're doing something wrong". 

It's one of my personal biggest pet peeves. 

We all know, logically, that every person is different. We may say the words, that every single body responds differently to every pain, disease, trauma, etc... but do we really believe it? 

When I see all of these people on TikTok and IG touting some treatment or miracle cure, it's always the same messaging: "you're doing it wrong". 

In a society that considers treatments to be a one-size-fits-all solution, we lose sight of the complexity of the human body. 

Every single thing that we put into our bodies - be it medicine, scents, food, lotions, thoughts, knowledge, etc... - will react differently than any other person on the planet. 

That's why side effect lists are so long. That's why so many people are on so many different medications. It's why different people respond differently to a night out drinking. It's why some people become addicts and others, who engage in the same behaviours, do not. It's why some people swear by naturopathic remedies and others swear by modern medicine. It's why people with the same disease all look different, experience different symptoms, are all on different doses of medications, are sometimes on entirely different therapies or dietary restrictions. No one responds in the exact same way as any other person. 

We need to stop seeing treatments as one-size-fits-all. We all respond differently - and every single one of us is just doing our best. We're all simply trying our best to feel better - and we are all learning about how our own bodies respond. 

How do we cope in such a society? How do we help each other? 

Support. 

Support without judgement oozing from our mouths. Support without a thousand suggestions. Support without questioning someone else's approach. 

So much easier said than done - but it's a start. 

Daily Life with IBD

What is it like to live with Inflammatory Bowel Disease (like Ulcerative Colitis or Crohn's Disease...)? 

The short version of explaining these diseases is that the digestive system doesn't work properly. 

What does this mean? 

Here are the basics: 

It can mean diarrhea, constipation, intestinal pain after eating, intestinal bleeding, feeling like you have to poo but nothing coming out, incontinence, intestinal cramping, excessive bloating, foul-smelling diarrhea or gas, nausea, ulcerations, and just a general feeling of discomfort. Bigger complications can include fissures, fistulas, prolapses, and blockages. All of this often leads to severe generalized fatigue, low iron, dehydration, which then can lead to more... and more... 

When the intestines don't work properly, other systems can be affected. Pelvic pain, liver, pancreas, eyes, skin, etc... 

After 3 years of severe Ulcerative Colitis, my large intestine was removed in an emergency surgery. I had a temporary ileostomy for 7 months before the reconnection and internal J-Pouch was created in a second surgery. 

Life with a J-Pouch can be complicated. The first couple of months after surgery (before I was diagnosed with Crohn's Disease), was quite difficult. Essentially, this J-Pouch needed to 'learn' how to behave like a large intestine & rectum. I needed to use rectal catheters at night, sometimes with Depends, and had different things I had to do to help the J-Pouch build up muscle strength and capacity. I, unfortunately, suffered from Pouchitis, so the inflammation persisted after surgery... so I didn't feel all that different. Over time though, the incontinence improved, the urgency improved, and my J-Pouch started behaving like a real large intestine. I have to be more careful with certain foods, I have had to be cautious about foods that may cause blockages (and have had a few partial blockages), but overall, the internal J-Pouch essentially behaves the same as any other person... with IBD. 

So what kind if behaviours are common for someone with IBD? What is it like day-to-day? 

1. Any place we go to, we will know where the washrooms are within the first few minutes. We need to have a game plan and a route to get there. 

2. If the bathrooms in a public space have no actual main bathroom door at the entrance, we'll often choose the last stall - as far away from the entrance as possible. 

3. If a public washroom has a door to the entrance, if it is propped open, we may close it before going in. 

4. We will often take aisle seats at movies, or performances, or flights, or on a bus - again, preparing for a sudden washroom break. 

5. We may be hunched over - this is what is known as the protective stance. Our 'stomach' (really, it's the intestines) are always in pain. Sometimes being scrunched up a bit helps us with that cramping pain - we can't always help it. 

4. All of our plans are tentative. Every single day, I wait for my intestines to 'wake up' before I know what kind of digestive day it's going to be and what activities I may or may not be able to physically handle.

5. We will always have food restrictions of some kind - and they might be different from every single other person with IBD. Every person has a different experience. 

6. Most fad health diets are not only unhelpful to someone with malfunctioning digestive systems, but they can actually be quite harmful. 

7. Some of us might exhibit some adrenaline-junkie behaviour - this is because adrenaline temporarily slows or halts digestion - and this may be the only time of the day when we feel very little pain. 

8. We have a very complicated relationship with food - and our weight will often fluctuate severely depending on how we are doing and what medications we might be taking. 

9. We often need full crash days. 

10. Sometimes we need to go on an all-fluid diet for a few days to help the intestines rest. Sometimes it is just to painful to eat. 

11. Nausea is common and often constant. 

The best way to manage your own IBD is to really listen to your body. Keep a pain diary & food diary to figure out your worst food triggers. If certain foods seem problematic, try removing them from your diet for a few weeks, then try re-adding them in. 

Use this same process for activities and stressors that might be catalysts for flare-ups. Try to understand when your body is telling you that it's going to crash - pay attention to all of those signals our bodies tell us when we are pushing too hard or when we need a bit of a break. I'm not suggesting not to do those things, but understanding why you flare-up or why your body crashes can help manage the disease. It gives you the information and opportunity to prioritize your life and what makes you happy - and to find ways to manage your stress in better ways. 

It means learning about your body in new ways, and understanding your physiological processes on a much deeper level. Soon, you'll be able to recognize the differences between types of pains before they become out of control. 

Once you understand your own body, it gets easier to manage the fatigue, the full-body inflammatory processes, the crashes, the nausea, the eating habits, the medications, and everything else. 

It takes time, patience, and the knowledge that your experience will be unique, even though thousands of people have the same diagnosis. Tips and tricks from others can be incredibly helpful, but there are many parts of this disease that no one can anticipate. 6

Small Inconveniences of Being Sick

So we all know the tragic parts of daily life with chronic, painful, incurable, and not-well-understood illnesses. 

But what about the smaller parts of living with chronic disease? 

So what is a small inconvenience of daily life with chronic illness that you just-as-soon never want to do again? 

For me, it's the constant documentation. It's the bathroom and food diaries. It's the pain-scale monitoring. The medication allergies, current medications, and medication refill schedules. It's the scheduling of appointments. The documentation of every single new, worsened, or improved symptom or side effect. The careful recollection of every single medical appointment. Not to mention all the paperwork that comes with new appointments, working with insurance, any social programs, and the lengthy phone calls. 

Being chronically ill is a full-time commitment, filled with tedious tasks, stressful appointments, painful treatments, and a lot of unanswered questions. 

If I miraculously was cured of all ailments, I would be so happy to never have to sit and jot down anything in a medical diary ever again... you know, along with being cured. 

Bravery Isn't A Feeling

There's something really confounding about the word "brave". 

When you're ill, especially with something chronic or something widely accepted as particularly difficult or serious, you hear the words "brave" and "inspirational" quite a bit. It's definitely a flattering sentiment, so I'm not complaining, it's just that I have never felt brave. Or all that inspirational, really. I have felt fear and helplessness, a whole lot of frustration, and I often feel a sense of determination - which is likely the closest to bravery I can conjure - but never brave. 

I think bravery can only be attributed to someone by another person, or to oneself after an ordeal, and I think that's why it's such an uncomfortable compliment. It's not actually a feeling. 

If someone tells me that I've been brave for doing something, I'll take a minute to look back on that situation, and what I always remember feeling is terrified. Not only that, but quite often, there were no options.... 

For instance: 

I never once felt "brave" having my large intestine removed. I had no choice. It was a situation that was entirely out of my control, and I remember feeling all sorts of emotions, but bravery definitely was not one of them. 

Doing these ablation procedures - I don't feel brave. I feel scared, anxious, and like a wuss for being so terrified when I know how much it helps. 

Even talking about all of this illness, sharing personal stories and going into nitty gritty details, to me, it isn't brave. I feel selfish about it, I feel liberated sometimes, and I feel determined to get my experiences out there for other people who are developing chronic illness and are looking for information and other people who are going through it. 

Having illness, and living life with illness, isn't brave, in my opinion, because I have no option. It's not like I have the ability to give away that illness for an easier life but decide to stay ill. Waking up each day and dealing with the laundry list of uncomfortable symptoms doesn't feel brave, it just feels like life. 

When I receive comments or notes about seeming brave, I often get that uncomfortable shy feeling you get when you're complimented but don't quite relate to it. It's like I can't connect my life experiences to that word. Every time I go through something big, or get through a really difficult day, the feeling of 'bravery' is elusive... 

When someone calls me brave, for just living my life, sometimes it feels like it cheapens it; it does it a disservice. Like living with a lot of illness  is brave because the easier thing to do is not continue to live...? Almost as though if you're ill, some people think life is not worth living? I emphatically disagree with that instinctual sentiment. 

I truly love my life - even though illness and awful symptoms play a large part. I have a lot of illness. I am happy with my life. Just like everyone else, I struggle and I can feel disheartened, but I am happy. 

I love the idea of seeming brave, but I don't know that I have ever felt it. 

Have you ever actually felt brave? 

Boosting Immunity

We all hear about these incredible new products or 'super foods' that help to boost immunity.

Immunity boosters are the new trend, in all sorts of new packaging. Juicing and smoothies, teas, supplements, specific plant-based diets, and even essential oils. 

Here's the issue: 

My own personal immune system is very confused. It doesn't seem to be able to differentiate a threat from a benefit. My immune system attacks my own cells and organs as if they were imposters. 

That is what autoimmune diseases do. 

Whenever I receive a message about some fantastic new immunity boosting product that 'could really help me feel better', I simply chuckle to myself. 

I am on immunosuppressants - an attempt to slow the progression of my various illnesses by suppressing my own, confused, immune system. 

Now, sure, an immunity boost might do me well in some respects. I may rarely get a cold or flu bug, or could fight them off a little more quickly, or maybe little infections or the like wouldn't be so bothersome, but my immune system doesn't stop there. Once it gets a boost, it starts fighting like mad to protect me from other 'invasions' - like, you know, my own organs. 

My biggest, and most important question: 

Why do people who are pushing/selling/advertising immunity boosting products target individuals who have autoimmune diseases? 

If my immune system is the problem, then why would I want to give it more power than it needs? 

That is one aspect that makes these diseases so brutally complicated. We need to find that perfect balance between suppressing the immune system enough, to ease symptoms and slow disease progression, while keeping it intact enough to fight off common infections and complications. That threshold can take years to find and can be pushed out of balance in an instant. 

Please do not try selling me on immunity boosting products. That is not a healthy benefit for my body in particular. 

Two Week Update

It has been just over 2 weeks since my last surgery.
I am recovering well overall.
Rj and I both caught a cold that has been going around, but mine only hit me for 3 days. They were brutal days, but it was over quickly.
My incision scars are already diminished. I am healing well. So well, in fact, that at night I often forget that I am still recovering... so I'll get up too quickly or shift to an awkward position and feel an internal tug from my incisions telling me to slow down.

There were a few things about surgery that I always seem to forget:

1. Nosebleeds are normal. The oxygen tube that goes into your nostrils dries out your nose and often causes nosebleeds.
2. Going to the washroom hurts the scars. It hurts to push. So don't eat things that tend to plug people up - it's just a bad and painful idea.
3. Gas in the intestines can present as shoulder and chest pain. And I mean intense shoulder pain.
4. You are now missing a chunk of your body - your innards are going to be sore and functioning oddly for a bit. It is normal for things to be a little weird - just watch for intense pain or high fevers, dark blood, or vomiting.
5. Weakness is common. You just spent a few days not eating, and then several more days eating very little.
6. Eight weeks doesn't sound like a long time, but it is.
7. Showering becomes complicated - especially if you still have the steristrips on.
8. Dissolvable stitches only dissolve on the inside. So some parts of the stitching may stick out for a bit.

If you're like me, then you recover quickly.
I don't know if it's because I am so used to functioning with lots and lots of pain and nausea, or if my body just likes to recover quickly.
Either way, it means that I end up feeling like 'my normal' usually within the first week....
But I still have to wait the compulsory eight weeks in order to resume certain everyday activities.
This can be super frustrating. And boring. And can make it feel like cabin fever.

I have to remind myself every day that I am still recovering. Partly so that I don't push too hard. Partly so that I don't freak out if I tire far more easily than usual.

By far, this Cholecystectomy was the easiest surgery to go through and recover from. That's not to say that it's easy, but it has been easier than the Total Colectomy, Resection, and the Hysterectomy. Even the sweat glad removal surgery was tougher to recover from than expected.

So I am doing well, a little frustrated, a bit of cabin fever & boredom, with some early nosebleeds and bad nights after eating too much.
Pretty standard.
:)

The Lighter Side of: Failure

Almost every interview I have ever been a part of - whether it was for a job, for a gig, or a simple autobiographical blurb for a fundraising campaign - I hear the same question:

"What would you consider to be your biggest failure?"

This question can often be framed in a more cryptic manner, but the basic phrasing remains.
When have you failed?
What did you fail to accomplish?
How did you react?
What did you learn?

Of course we have all 'failed' in one way or another. Not making a team, not achieving the desired marks or grades, messing up an audition, screwing up a presentation, not getting a promotion, trying something new and not having it turn out as hoped.
Those situations are part of life, but I actually would not call them failures.

When we go out for a team or for a specific job or group, it is not always about being accepted into that one particular arena. More often than not, it is a level that we are attempting to achieve. A level of talent or expertise that would help us gain some recognition.

In my opinion, the only way you will ever fail is if you never try again.

Failing is an opportunity to recognize your faults and improve upon them. It is a challenge to learn more, improve your skills, try harder, work harder, change your perspective. These failures are sometimes accompanied by critiques and/or comments. Take these comments and apply them to your current level.

Here is some hard truth:
There will almost always be someone who is more talented than you are. There will almost always be someone who is ahead of you. And even if you do reach the very top - if you become the prima ballerina or the most note-worthy human being in your chosen field, that does not mean you have achieved perfection. I do not care how talented someone is, there is ALWAYS a way to improve one's skills.

So what should we strive for?
We strive for a personal best. Then an additional personal best. We keep striving until we are satisfied. We continue to learn, to adapt, to fail over and over again until we are confident and no longer failing.
For some activities, this satisfaction may come from being average. It may come with barely being able to accomplish something. For other interests, it may take an entire lifetime to feel that confidence.

You only fail if you give up.
But even more than that - failure is not a bad word. Human beings have limitations. We each have our own unique faults. Failure just means that you have gone out on a limb to try something new and did not quite succeed in the manner you were hoping. It means you put yourself out there - you risked something to gain something else, even if it is only the knowledge of your own personal limitations.
The Lighter Side of Failure is that you have a chance to improve and, maybe, even try again.

Feeling like you have failed means that there was, evidently, passion in what you were attempting. That, in my opinion, is the vital importance.
We try.
We passionately try.
We learn.
We keep trying.

Failure is not a bad word. Nor is it final... at least not in the majority of cases.
Failure is proof of courage.
Failure is an opportunity.
So hold on to your own personal failures, find special instances that you can take with you to future attempts and build your knowledge. Try again, or accept that one particular limitation, but do not stop taking certain risks because of one failure or another.

Cravings

I think I have talked about cravings quite a bit on this blog.
Cravings are usually a symptom of an underlying deficiency. Usually.
Of course, cravings are affected by medication, dietary changes, over-consumption of various foods, and hormonal imbalances.
When it comes to things like Vitamin C and the like, cravings often have a ulterior motive.

I have recently learned that I am currently Vitamin D deficient. Although a common problem for people with malabsorption issues due to illness, it can still cause severe symptoms.
I had been feeling off for months. A little bit more pain (especially in my ribs), a little extra fatigued, a little more down, a little bit more tired and more trouble sleeping.
Now, these can all be easily explained away. Rib pain - that is common in someone with Ankylosing Spondylitis, and the rib pain has been there for a long time, just a bit more intense. Fatigue is very very normal. I thought I had simply pushed myself too hard. Feeling down was probably the only standout symptom. Surprisingly enough, I do not feel down very often. Once in a while, like while watching This Is Us or some other emotion-inducing film or show, or after spending time with friends and their children, I will be down for a few hours. HOURS, not days, and certainly not months. But when you are dealing with multiple illnesses that just seem to have all worsened just a touch at the exact same time? It is difficult to avoid feeling sad. The sleep issues have always been issues. They cycle between sleeping way too much, not sleeping enough, and (either way) not having much energy very often.
All believable explanations.
Then there were the food cravings.
French Toast, Monte Cristo, Chocolate Mousse, Custards.... what do these have in common? EGGS. Eggs are a major source of Vitamin D. I was getting stir-crazy in the house - trying to soak up any sunshine I could. I craved fish every day.
Just makes me wonder if this was just me, or whether it was a chemical imbalance subtly telling my body that I needed to consume some of these foods.

I may never know.

This Vitamin D deficiency has me mildly concerned. I take Vitamin D drops almost every day. Definitely every second day. And I use about 5 or 6 drops each time (5000-6000IU). I also have no idea how long I have been deficient.
I have been prescribed a 50,000 IU pill once a week for 16 weeks. Then I will do repeat bloodwork and see if that has topped me up.
If it hasn't - that is when we may need to look at an underlying cause of the deficiency. I am trying not to think about that though. For now I will take my Vitamin D, up my Calcium intake as well (as suggested), get out in the sun whenever I can, and continue eating healthy foods. (Fish and fish oils are great for my Macular Degeneration anyways).

This is just another reminder that food cravings may have an underlying purpose.

FtF Prize Pack #5

Our 5th prize pack comes, again, from Lighter Side of Medicine artwork and from Karissa Diane music.

The main smaller piece of artwork is the Fight the Fusion logo on a 5x7 canvas panel - in perwinkle!
This was the first colour that I thought of to be a part of our logo this year. So while we decided to go with yellow backgrounds more often, this piece has a special place in my heart.

This prize pack also contains Karissa Diane's two cds and some additional bookmarks, because music and reading are both activities that keep chronic illness patients motivated!

Music is always something that gets me out of bed. Just playing one song on the piano, or listening to a new song I would like to learn, or learning about the history of some songs, or just pumping up the music to try and inspire me to get up and go do something - this is what helps motivate me. Music is also an endeavor that does not always have to expend much energy. It is always there.
It is always present, very often emotionally cathartic, and, most importantly, accessible. Even for those who cannot hear, there is a tangible feeling - vibrations, thuds, beats, frequencies - that can reach even the most ill.
Music is a refuge.

This prize pack is all about therapeutic art. Doodling, painting, drawing, singing, reading; music therapy, art therapy, literary therapy.

So grab your comfiest socks, a cup of tea, and a cozy blanket. Cuddle up with your favourite book or just sit there listening to music.

And don't forget to get your comments, tags, shares, and donations in to Arthritis Research Canada.

*Remember to comment on my instagram page once you have donated!*

Fight the Fusion Logo

Have you seen the main art piece/logo for Fight the Fusion?
If you haven't, please check it out.

It's a little busy for a basic *logo*, but I really love having it as the main image associated with the fundraiser.

It is a simple, almost cartoonish, spine and pelvis. Going up the spine are leaves, and bursting from one or both of the hips are flowers and leaves and everything beautiful. Each piece is slightly different - because every single person with Ankylosing Spondylitis or any form of arthritis or spondyloarthropy is different. I have made some personalized pieces using the individual's favourite florals.
There are, however, a few constants in the greenery. At the very top of the spine is a little seedling. For me it is one of the universal symbols of hope; of new life, new beginnings, and a future.
There is one other symbol featured somewhere in each piece. It is not necessarily in a specific spot, but it is there. It is a dandelion with its seeds floating outward. I have seen this particular symbol used in various health awareness groups: rare diseases, mental health awareness, cancer, autoimmune disorders, lupus, etc...
This is a timeless symbol of hope.

Each spine will vary, the flowers will vary, the vines and greenery will vary. Each piece, though, will include the seedling at the top of the spine, and a dandelion somewhere.

Arthritis and Spondyloarthropies do not have to represent this terrible image of pain, suffering, and loss of mobility. Fight the Fusion is about finding ways to remain active, finding treatments and medications that help ease our pain so we can live our lives fully. It is about seeing beauty through pain. It is about cultivating and nurturing our health, in whatever way we can.
Help us spread awareness for the growing numbers of people diagnosed with these painful illnesses. Not only are numbers rising, but people are being diagnosed at very young ages, with many requiring joint replacements in their late 20s and early 30s.
Help us find better ways to help slow down the fusion process. Join us from April 27 until May 4. Please share and let your friends know - even if you cannot donate - to participate by showing a picture of yourselves being active and engaging your spine!

IBD In Your Teens

Here is some basic information that I wish someone could have talked me through when I was first diagnosed with an Inflammatory Bowel Disease.

A short little history:
I was diagnosed with Ulcerative Colitis when I was 14 years old (in the middle of grade 9). No one that I knew had ever even HEARD of Crohn's or Colitis. I wound up having my large intestine removed right before grade 12, had an ileostomy bag for 7 months, then had the reconnection and J-Pouch done a month before graduation. A few months later I was diagnosed with Crohn's Disease.

When you are diagnosed with a chronic illness as a teenager, it is even more difficult to understand the idea that you may never again feel well. That the pain in your stomach may never leave you alone, and that you have already essentially married your doctors. Your physicians and specialists become as important to your daily living as any friend, family member, or even spouse. They quietly guide you through everything. The pain itself - that you may actually become accustomed to.

Here are some tips:

1. Figure out exactly how you want to go about communication. Do you want to be open and honest about the disease? Do you want to conceal your diagnosis? Are you the type of person who is concerned about appearance when it comes to canceling plans, racing to a washroom suddenly, missing class, or last-minute work schedule changes? Or can you just ride out every day and take it as it comes? Find the best way of communicating about your illness.

2. Cherish your good days. Cherish them. Your day may even start poorly and then you may feel better, abruptly, later in the day. You may feel guilty about taking advantage of your good moments, but I would highly suggest: do whatever you CAN do, while trying to be respectful of other people's time. If you are stuck vomiting in the washroom and decide to skip class to continue puking in your own washroom, but then feel well later and want to go for dinner - go for dinner. As long as you are prepared to be judged, are prepared for consequences, and understand that people may think you are faking - then do it. Do what you can do when you can do it. Try to regard everyone else around you, but don't deny yourself simply for appearance's sake.

3. This one is big: other people at your age will have trouble understanding what is going on. You will lose friends. It seems unfair, but it is the truth. They may not understand anything you are going through. They may not believe you are ill at all. They may believe that nothing you are going through is *actually serious*. The friends that do stick around? The supportive friends who are willing to buy you underwear if you have a fecal incident? Or who book a table near the washroom for a group night out? Those people are gems. They will make everything seem a little less painful - by telling jokes, by having your back, by being as empathetic as they can.

4. Contemplate your long-term goals and what this illness may mean. You will have to consider things most people may not have to consider until they reach age 40 or more. How is your insurance coverage: do you need to find employment with good benefits?
Start thinking about a retirement plan. Yes, seriously. If IBD becomes severe enough, you may have to eventually rely on a fixed income.
What do you want in your life? What goals can be reached no matter how severe your illness gets? What goals can you only achieve with decent health? 

5. The right human being will fall in love with you whether or not you are ill. That person will see you for exactly who you are - your humour, your laughter, your quirks, your tastes in music and movies and food. There are ways to conceal the most embarrassing parts of this disease until you are ready to let a significant other into your world of medicine.

6. SUPER IMPORTANT: Every single person's experience of IBD is entirely different. Some people have difficulty with specific foods, others have fewer symptoms if they eat those same foods. Exercise and adrenaline helps some, but it also hurts others. There is no one-size-fits-all remedy or treatment plan. It has to be tailored specific to you. Finding what works is a process of elimination; trial and error. You are, in essence, your very own guinea pig. Sorry. So when you find what works, don't listen to the hype or the judgement, and keep doing what you are doing with the close consultation of your specialists.

7. Try to remember that, although you are feeling absolutely horrendous and lost, you are not alone. You are not alone in struggle, in pain, in suffering. This also means that, even if you can't see it, other people around you are also suffering. Intense and torturous pain gives no one the right to treat others poorly. We all make mistakes and we all want help, but lashing out does no good for anyone.

8. Be wary of support groups. There are benefits and problems with every support group. Sometimes it offers great coping advice and the simple knowledge that you are not alone in this. Other times it can become a 'pain war' of 'who has it worse than whom'. Further to that, there is a surprising amount of criticism and comparison. Not to mention that it can be quite alarming if you are in the early stages of diagnosis. Sometimes, seeing the most severe cases is just more anxiety-inducing.

9. There are ways of reaching the most conventional goals in unconventional ways. It can be nearly impossible to get to class all the time, but that does not mean a diploma or degree is out of reach. It may take you longer, you may have to work 10x as hard at home, or even do your research or homework at the hospital. But it can be done - especially with open communication.

10. This is your life. Without stepping on others: find people, hobbies, and activities you love. Cling to the coping strategies you discover. Try to ignore the judgement from people who do not matter or who have no say in your future. Cherish your time and your true friends. Find foods that hurt less and a regimen that helps you get motivated each day, rather than settling into a void. Find doctors you trust and can openly communicate with. Trust your physicians who suggest food and bathroom logs - these will come in handy. Find people who 'get it', who 'get you', and who accept you for exactly who you are.

Also, here are some products you may want to invest in:

• Mini air fresheners to keep around
• A bathroom playlist (if you want to conceal loud bathroom breaks when lots of people can hear).
• Depends and diaper rash cream
• Portable camping toilet (an empty 4L milk bucket will do in a pinch)
• Doggy bags (for vomit or emergencies)
• Peppermint tea (helps with nausea)
• A Bidet for your toilet (helps prevent the need for the second set of items)
• Dry Shampoo
• Extra sets of underwear
• A physical pen-and-paper daytimer (because technology screws up sometimes and you may have lots of vital appointments)
• A notebook to keep logs - or a medical logging application for your phone. Manage My Pain Pro is a great one that is highly customizable.
• Xylimelts (for dry mouth caused by several medications)
• Ice packs or magic bag that can be heated or frozen.

If you have any other questions, need to vent, want to discuss anything in detail, I am always available.

Lightersideofmedicine@gmail.com

Craving the Outdoors

Every single year I tend to get a bit of cabin fever in the winter.
Even though I cannot do much hiking (if any at all) anymore, and I definitely can't snowboard anymore, I still have this instinct; this naturally intense draw to the outdoors, no matter the season.
When I was able to snowboard and even go running, winter was just as much of a playground as summer nearly always is.
Now that my mobility is more limited, I find it tougher to get out.

I have been craving mountain air.
I keep telling myself that I am going to take a drive to a nearby trail where I used to walk Dex, but I have been held back quite a bit with feeling so ill and having just done my Cimzia injection. Higher elevations tend to trigger HAE throat swells, usually minor, but the additional trigger may cause a major problem this soon after my injection.
So instead of pushing myself to drive out of town to enjoy the fresh air, I decided to do a small yoga session outside in my own backyard.

The fresh cold air, the snow, our own big spruce tree, and a calming yoga session was enough to take the edge off of this cabin fever.
Plus - for my bestie's birthday we sometimes go to a little mountain town for a day or two, and that little traditional stay-cation is coming up soon. I will be able to take full advantage of the Rockies (using my wheelchair of course) and I'll even get a chance to go swimming AND get a massage (if my poor body can handle it).

Nature provides the most effective sense of calm I have ever experienced. I am so grateful that I am still able to enjoy that experience whether I am entirely surrounded by trees, or just gazing up at one.

I am looking forward to more outdoor yoga sessions and meditating in the cold snowy air.

Active Resting

This is a notion not well understood.

Active Rest.

Complete oxymoron at first glance. A paradox even.

Here's a simple way to describe it:

Let's say that you break your leg. You know that you should not be walking on it afterwards. You know that you should keep your cast on for the amount of time your doctor tells you to leave it on, even if the pain has subsided.
Once you are cleared to be active, you take it easy at first. Perhaps you have a big tournament coming up in which you would like to be fully capable of participating, but there are several league games before said tournament. So instead of jumping back in full-force in the league games, and even though you feel entirely healed, you practice active rest to give yourself the time to heal even better. Every moment not playing league games is difficult. You are purposely holding yourself back and requiring intense self-control to rest.

Folks, like myself, with chronic illness need to practice active rest on a regular basis. If we have something big* coming up, or if we just did something big, even if we feel decent, we need to rest. We may feel as though we could accomplish something, but we force ourselves to stay in bed or at home to rest. To recuperate. To prepare. Actively resting is not as delightful as it sounds when there is illness involved. It's not as though the pain evaporates if we are lying in bed. We all have to remember that pain with chronic illness is often constant. Severity of pain and nausea obviously vary from day to day, but for me, there has not been more than a few days over the last 18 years where I have had zero pain (and even if I do experience a day with zero pain in one illness, I have about 10 more that are waiting on the bench to jump in and fill in that void of pain). 
Rest days are not always bubble baths and face masks and calming music. It is actively preventing ourselves from flaring up our illnesses to a point of being unable to function for weeks or months at a time. It is taking as much medication as our body requires, even if we do not want to do so. It is allowing our bodies to recover. It means saying no to social events and date nights. It means leaving the vacuuming or the dishes an extra day or two. It means constantly putting off chores and events and social engagements because we know that we don't have the energy to do everything around the house, everything for appointments, everything for injections, AND every social event.
For me, personally, if I get two things done in one day, that's a big day for me. If I can manage to empty the dishwasher AND do a load of laundry - awesome! If I can throw the ball for Decker AND go to an appointment - awesome.
And in between these 'busy' days, I rest.

Purposely, begrudgingly, uncomfortably, I rest.

Actively resting is not always comfortable. It often leaves you feeling guilty of being lazy, even though you are simply listening to your angry body. You lie there resting even though you are restless and want to do something. It takes more than just self-awareness, it takes a lot of self-control.
If I didn't practice active rest, I would wind up in the emergency room all the time for severe flare-ups that cannot be dealt with at home.

So make sure to practice active rest - and know that it is exactly what you should be doing.

*a big event would be maybe a date night with dinner out, a long drive to an appointment, getting bloodwork done, a procedure, or even just a simple injection. Getting groceries or going shopping (for me) constitute colossal events.

Did Too Much

I did too much yesterday.
Way too much.
I went grocery shopping (with help). We needed to get a LOT of items. I was determined to try doing it by myself... but I couldn't use my wheelchair. How would I push a cart? And the grocery store I tend to frequent only has one of those power chairs with an attached cart - plus the cart was way too small.
So I used a big cart as my cane. (Sometimes I even put my weight on the cart and push with one foot down the aisle... like a scooter or a skateboard... then switch for the next aisle. I am a child. But it saves my hips).

I had told my hubby that I was going, but he wasn't home from work yet. Knowing my stubbornness, and also knowing that I would falter, he showed up at the store to help me with the last half of the groceries. I made it to about the baking aisle before I reeeeally needed his help. Then I had to let him take the lead.

I also did a fairly intense yoga session yesterday when I woke up to get the blood flowing and my joints moving.

Now today is a recharge day.
I feel awful.
But I knew it would be. Grocery shopping is always crash-inducing, unless I use the wheelchair and someone else pushes the cart.

Easy day today.

After Crash Day

The crash may be over, but there is still going to be the aftermath.

There is always a moment when I know that the worst of the 'crash day' is over. Suddenly I can stand up a little bit straighter, I am rocking or fidgeting less, and it doesn't hurt quite as bad to just exist. The cramping eases just a little bit, my muscles are no longer in an extended length of contraction, and I am no longer fighting back tears.
The crash - this 16 hour crash - is easing up.

There is a wave of relief when I realize the worst part is over. I feel like I can eat without instant repercussions, and I can actually sit on the couch instead of needing to lie in bed for the majority of the day. I can move just a little bit more.
The day after the crash though isn't all rainbows and roses. Just like any brutal change or pain in the body, the after-effects may last for several days, or even weeks. Recovering from a body crash takes more time than just realizing it's done and bouncing right back. It takes time. It takes energy. It takes determination.
Days after a big crash usually include lots of sleep, trying to catch up on chores, but not having enough energy to do so. It's like the crash drained my entire battery - so the next few days my bed acts as my charging station. Each time I allow myself to just lie there and recharge, the more energy I'll have in the coming days.
But we never just let ourselves recharge without interruption, do we? We charge for a bit, then get up and drain the battery more, then charge, then drain the battery.
So it can often take weeks to become 'fully charged'.

Unfortunately for many chronic illness sufferers (myself included), we have a busted battery already. I usually sit at about 30% on any given day. So it doesn't take much to drain my battery, but it takes weeks to reach my capacity.

I felt quite a bit better today compared to yesterday.
Unfortunately, that doesn't mean all that much. I need to go and pick up some medication tomorrow and I am very grateful to have help. I am also very grateful for my wheelchair, as I am almost positive I will require its assistance as well.

At least the crash day is over.
Fingers crossed to avoid another one for at least a few weeks.

Wedding!!!

We have now been ❤MARRIED❤ for four and a half days and it is amaaaazing.
Even with all of the hiccups, all of the pain, all of the fallout, the weekend was actually perfect.
At one point during the reception, someone asked how I was feeling, and my response was:
"Horrible, but I am blissfully happy, so f*ck it!".
I was smiling all day, but I cannot lie and pretend as though it wasn't affecting me health-wise. Any big day affects me, and this was the biggest and absolute best day of my life - of course it's going to wreak havoc on my system. Every second I have spent in pain, every cent we spent, every meltdown and sleepless night, ALL of it was worth it.

So we get up to Jasper on the Thursday in the afternoon. I wanted a lot of time to rest and relax at the hotel after the long drive. I wanted to be well-rested for the full weekend of activities. The drive in the mountains was gorgeous - some Autumn colours - and our pup took to the room right away (I'm sure it helps that he has been there before - in the very next room to last time) - but the altitude change tends to be a tiny trigger for HAE. I didn't notice anything, but we know that it occurs. That night I wanted to go for a short swim. The pool there has a lot of salt, so a little less chlorine, so I can usually spend about 20 minutes before I start reacting, and when I am in the water, my pain seems to melt away. I am not sure if it's the pressure being removed or what, but it works, every time.
The rest of the night was full of room service and relaxation.
That didn't exactly hold off a full-blown episode.
I was very emotional and stressed and excited... so around 1-2am, I felt the throat tickle. It wasn't severe, it wasn't even moderate, but it was there. By the time I woke up to take my morning meds at 8am, my voice had changed, my vocal cords were affected, I vomited for about 15 minutes, and I started having tiny, mild stridor breath sounds.
Time to go in.
We thought about waiting a bit... but we had a busy day ahead of us too, so we thought we should go early. I had called Jasper hospital a month before, explaining the situation and asking if they would be able to treat me, and it was still a big question mark. There was a chance they could say no and send me to Hinton. There was a chance they could say it was too serious and airlift me to Edmonton. We didn't want to take any chances.
Turns out, the hospital at Jasper was incredible. The nurses were amazing, the doctor was great, and even though I am not positive they believed me entirely at first, they treated me as though they did, and then realized later on how serious it could have gotten. Once my voice came back after treatment it was obvious from the massive difference in my voice and breathing.
The IV treatment worked wonders, and since they had to monitor me for about half an hour afterwards, they offered to give me some IV fluids!! So I left the hospital with better breath, my normal voice, and rehydrated. We also still had time to rest for a couple of hours before going to rehearsal and to set up the Hall.

At the hall setup I totally pushed too hard. I barely made it back to the hotel room to vomit some more. Then I switched rooms (so we could be apart the night before our wedding day), and tried to get to sleep as fast as possible.
My bff and I shared the room and we were both up by 5am. We ordered room service, I took a few bites (puked some more), and then we started the day.

So what if I vomited several more times?
So what if I couldn't actually EAT the catering?
So what if I couldn't let loose and drink some fun drinks?

I couldn't really eat, my Ankylosing Spondylitis pain was 9/10, I had to take several extra pills, I vomited a few times, and I needed to race to the washroom a few times, but it was such a minor part of the day that I could almost ignore it.
Almost.
Adrenaline got me through. Happiness got me through. Bliss got me through.
It was a perfect day - no matter what my health was doing!

The following days were much harder, having to use the wheelchair and struggling with nausea and energy, but all of it was worth it.

We got our perfect wedding day.

We had a TEAM of people surrounding us ready to help with anything. We had scores of people being more generous than anyone could ever ask for.
Our wedding started our marriage in the most wonderful way and we could not be happier.

P.S. There was only one dry eye in the room. I think every single person shed a few tears at some point. My brother's toast was the most emotional. He said something that I am not sure everyone understood. With a few funny comments and a great toast in general, he said: "I wasn't sure this day would ever come."
This wasn't a cliché. This had nothing to do with relationships, with dating, with getting married or ANYTHING. It had everything to do with not knowing if I would be ALIVE long enough to get married. We weren't sure I would ever see 30 years old. My health has always been such a question mark and, countless times, utterly volatile.
But I AM alive.
We ARE married.
And I survived the biggest day of our lives. The BEST day. And now we can enjoy every minute of our marriage - with all of the health challenges.

Health Awareness Days

You know, we each get a few days a year when we are celebrated. We each have a birthday, many celebrate Mother's Day, Father's Day, Easter, Christmas, Anniversaries of all kinds, even days for Administrative Staff or World's Best Boss!

Well, if you are suffering from illness, chances are you have likely participated in a fundraising event, an awareness campaign of some kind, and many illnesses even have an Awareness Day or Week or Month!!
Basically, if you have suffered tragedy or pain or illness of any kind, you deserve to be noticed - to be celebrated as a total badass.
So even though you might be diagnosed with a slew of unfortunate illnesses that you can't control, you may as well get a few extra days to proclaim as partially yours to help raise awareness.

Attached is a list of days, weeks, or months, that directly relate to my health experience. How lucky am I to get so many awareness days!?!?! Okay... maybe 'lucky' isn't exactly the right wording. ;)