Truly Invisible

We, the collective 'we'  of Spoonie-dom, speak a lot about Invisible Disease; the illnesses that cannot be perceived by a cursory glance. These illnesses are umderneath the surface and often go hand in hand with the dreaded 'but you don't look sick' comments and the general distrust that comes with it. 

However, many of the illnesses that fall within that umbrella, especially once officially diagnosed, have some kind of specific evidence to back it up. 

For instance, sure you can't just notice inflamed intestines by looking at someone, but the pathology in their last colonoscopy would show inflammation or their bloodwork may show something a little off, like increased inflammatory markers. Many diseases are difficult to see but have medical science to back it up - like abnormal bloodwork, CT scans, MRIs, ultrasounds, biopsies, etc... 

But what about the truly invisible diseases? 

So far as we know, science has yet to distinguish any particular visible evidence (even under a microscope) to detect and definitively diagnose Depression. It is an illness of the mind. There is no blood test that says "yes, you 100% have Schizophrenia", or a CT scan that shows a blip that can only characterize Bipolar Disorder, for example. We can't just take a deeper look and know exactly what mental disorder someone may be struggling with, and we can't physically see it anywhere (at least not right now). So how do people cope with truly invisible diseases? How much of their time is spent just trying to convince health professionals that something is seriously wrong? 

Take a minute and think about how to explain a complex emotion to someone who can understand the words but who cannot empathize. Take grief, for example. There are a million ways that people have attempted to capture the all-encompassing feeling of true grief in words. Poetry/music/prose - for hundreds of years it all touches on this complex emotion. Unfortunately though, while most people have a general idea of the feeling, not one person will be able to truly empathize until they, too, have experienced it. We can think logically and we can try to connect it to our own lived experiences, but until we have legitimately and desperately grieved, we kind of don't have a clue. 

The same goes for these truly invisible diseases. We cannot physically see the scope of the damage, we cannot appropriately empathize. We are ill-equipped to fully grasp mental illness, unless we have it ourselves. And even then, every single illness (of any type) will be different and unique to every individual. 

So how do we help? 

Some tips:

1. Never assume any medical status based on how someone looks. 

2. If we cannot offer empathy, it's validitation and effort that's most important. 

3. Try not to be dismissive of another person's experience regardless of our own feelings and internal thoughts. 

4. Remember that it's not necessary to sit and analyze every single thing, nor is it necessary to put forth unsolicited advice or 'fixes'. Sometimes it's better to just be a calming presence. 

5. Remember that trying to navigate an entirely invisible disease is exhausting and soul-depleting. 

Favourite Pleasant Surprise

Let's face it - dating with any kind of chronic illness can be incredibly difficult. 

Dating with illnesses like Crohn's Disease, Ulcerative Colitis, IBS, or basically any disease where 💩 is the main issue, it can be more than just daunting. It can be embarrassing, especially on first dates, or when you're not quite ready to divulge certain unpleasant symptoms. It's even more uncomfortable when those dates include food - which is basically any date. 

When I was in my early twenties, though, I had a first date with a pleasant surprise - and it's still one of my favourite dating-with-Crohn's moment. 

We had spent the afternoon together, went for dinner, then we were going to watch a movie at his place. So we have a few problematic factors: 

A) several hours out (which requires multiple bathroom breaks) 

B) food

C) a brand new date's only bathroom, with a roommate also home 

Now, can we just talk for a quick sec about the horror of main-floor bathrooms that are near a living room or, god forbid, the kitchen? It is very literally a 💩-diseased person's worst nightmare. When they are that close to where everyone is hanging out, no amount of fans or running water taps will hide everything that goes on. I mean, it's considered (stupidly) taboo to 💩 on first dates, but it can't exactly be avoided when your bathroom breaks are every two hours at the very least. 

Anyways. 

On this date, I, predictably, had to go. 

My options were to either abruptly end the date without explanation and take off to find the nearest public washroom, or risk the dreaded main-floor bathroom situation. 

Well, when I stepped into the bathroom, there was the pleasant surprise! The moment I turned on the light, a radio, placed on the vanity, came to life with loud music, PLUS a fan! This guy had rigged it up for himself and his roommate that the radio came on with the light switch!!! 

Best first date 💩 ever! 

Thank you! 

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. 

A Week in the Life: My Crohn's Diet

Let me preface this by saying that my current 'diet' has nothing to do with diet trends. It has nothing to do with a list of recommended foods or anything that any social media influencer says or comments about what someone should or shouldn't eat during a Crohn's flare. 

This diet is based on MY body, and mine alone. Every single disease presentation is different - with different triggers and different foods that are either good or bad. This 'diet' is based on over two decades of trial and error - and each flare is also different. 

When my Crohn's gets really bad, I cut out most foods. I go down to a liquid diet - usually consisting of tea, water, popsicles, maybe a few bites of jello or a few spoonfulls of broth. 

Then I move on to adding in milk. If my body tolerates it, this opens up my dietary choices quite a bit - including creamy soups, yogurt, Boost or other nutritional supplements, ice cream, peanut butter, cheese, milkshakes, pudding. 

Then come the soft foods that MY body tolerates well. So I start to add in some eggs, starches and carbs. 

This is week 21 of being on a restricted diet. This is what an average week looks like for me: 

Monday: 

- yogurt

- peanut butter sandwich

- pudding

- mashed potatoes

- chocolate muffin

Tuesday

- French toast

- yogurt

- eggs

- cream of potato soup

Wednesday

- Boost

- yogurt

- pasta with alfredo sauce 

- rice pudding

Thursday

- yogurt

- eggs

- poutine

Friday

- eggs and toast

- yogurt

- roasted potatoes

- ice cream with chocolate chips

Saturday

- yogurt

- grilled cheese sandwich

- pan-fried sweet potatoes

Sunday

- yogurt

- cheese pizza 

Obviously there is room for some variation. Plus, over the past week I was able to successfully add fish AND avocado into my diet - so I have had a couple of tuna sandwiches, some avocado toast, I've had breaded haddock, and some sole in cream sauce at a buffet (along with scalloped and roasted potatoes). And it still holds true on this kind of diet - restaurant potatoes always seem better. I also tried having a fresh fruit smoothie (no seeds). 

Every few weeks I try adding something new. So I have tried adding some other vegetables - like carrots and cucumbers - or some meats, but my body did not respond well. What that means is that it is often painful the entire way through my digestive system, followed by intestinal bleeding for 2-3 days from one meal. 

It's a slow process. 

Luckily for me, my body tolerates potatoes, eggs, and cheese quite well right now (it's not always the case), and these foods can be prepared in multiple ways. 

Mashed potatoes, scalloped potatoes, roasted potatoes, pan-fried potatoes, baked potatoes, hashbrowns, latkes, fries, poutine, potato skins... 

Fried eggs, hard-boiled eggs, eggs benedict (minus the ham), soft-boiled eggs, deviled eggs, scrambled eggs, egg and cheese omelet, egg and cheese quiche, poached eggs... 

Bread, toast, pancakes, french toast, naan bread, croissants, english muffins, cake, muffins, cupcakes, brownies, tuna sandwiches, peanut butter sandwiches, avocado toast (as of this week), grilled cheese... 

SO much better than the most menial clear fluid diet. 

Frayed Tightrope

Chronic illness often feels like I'm walking on a frayed tightrope. 

I can't fix everything. No one can. We can't even diagnose every single thing that's going on, and because I have illnesses that encompass so many different body systems, I don't even know which illnesses are causing which symptoms half the time. 

It's trying to monitor and figure out if new symptoms are new symptoms of diseases that I already have, newly experienced side effects from medications I already take, side effects from a different dose/new-medication/dietary-changes, or brand new symptoms from something entirely new (like when I developed Labyrinthitis but waited too long to see the doctor because I didn't know if it was something brand new or something I should expect to experience based on other illnesses or medications). 

Then there are the medications. Medications that I need; that I have no choice but to take, because the alternative could be life-threatening. Though oftentimes those medications cause side effects - some which are temporary, some which become permanent. 

It's all a balancing act between settling down as many symptoms as possible without having too many serious side effects on the other side. 

Take Prednisone for one example. If you have ever needed to take steroids, you know that when you need it, you need it. It can cause some intensely nasty side effects... and Prednisone is the reason why I still occasionally experience auditory and/or visual hallucinations. If you've ever looked at the list of side effects of Prednisone, it makes you wonder why it's still prescribed so much - and it's because when you're in dire need of it, it works. 

My current regimen of medications is probably the most effective collection of meds I have ever taken - the ratio of relief: side-effects is appropriate and manageable. But it also means that if I change medications, try going off of these medications, or even miss a dose or two, I'm in big trouble. 

So we continue walking, trying to balance everything. We accept the frayed edges even though we know that they could send us crashing. We try to ignore the smaller wisps that suggest a bigger problem because we know that we can't fix everything. We always have to accept multiple points of difficult symptoms in order to keep functioning. 

Volleyball

This story is a favourite of mine - even though it is also one of my most significant pivots, and heartbreaks, in life due to illness. 

Volleyball. 

Volleyball for me was always on par with, and often above, my love for music. The moment I touched that damn ball I was hooked. I played all through junior high on both school and city club teams as well as attending camps through the summers. I was pretty damn good and had a wicked vertical: I played middle. 

In grade eight I was pulled out of practice one day by a University talent scout. I was asked if I had given any thought to where I may want to attend University (I hadn't... I was 13 years old and literally just trying to survive each school day). That scout was a representative for both U of M and UBC, so I was encouraged to give it some real thought. 

The next year is when I first got sick, though I still played school and city club ball. For grade 10 I was in hospital during tryouts, so I didn't play school ball. Then grade 11 came, and even though I was incredibly nervous, I attended tryouts. This was not easy. Firstly, I hadn't played school ball in a year and was terrified I'd be too rusty and would make a complete ass of myself. Secondly, it was made inescapably clear by the other girls that I was not welcome. It didn't matter that I had played every sport - in and out of school - with these girls the previous four years. When I showed up they huddled together, turned their backs, and pretended that I did not exist. Like children - pretending I was invisible. 

But I did exist. 

And I made the senior team, playing middle - at 5'7" I was the shortest middle in the league. 

Well, that year was incredible - even though I ended up hospitalized after every single tournament. My name was in the local newspaper regularly, I got to visit the UBC campus, compete in international tournaments, and by mid-late season I was a starting middle. I was, again, approached by scouts. I was told that I would be getting multiple offers in my senior year and that I would essentially have my choice of schools for full-ride volleyball scholarships. (I had my heart set on UBC by this point). 

By the end of the season I was at an all-time high. Even Coach told me to keep my jersey over the summer for the following year instead of returning it like everyone else. 

Then August came and my body had other plans. I had emergency open abdominal surgery to remove my large intestine. This meant a lot of different struggles, but a big one was that I couldn't play volleyball. My senior year, with prospective scholarship offers, and my ticket to get outta dodge and play the game I loved so much, was gone. On the first day of school I reluctantly handed in my jersey (number 9),with some tears. 

So I pivoted and focused, as best I could, on academia and music. 

That year was tough. I had a temporary ostomy, I got mono that year, had my second abdominal surgery a month before graduation, and had developed problems with my pancreas, liver, and thyroid, along with some particularly nasty side effects from Prednisone. After the second surgery I was technically 'cured' of Ulcerative Colitis, but it only took a few months to then be diagnosed with Crohn's Disease. Not like high school isn't already tough enough, right? 

It was obvious by then that I would have to stay closer to home after graduating - which in and of itself a question mark because of my health. 

I did receive several academic scholarships to the local University, so that's where I went. Unfortunately, that school did not have a volleyball team. So I focused on a combined degree with double majors: Music and Psychology. 

I could have gone to the local college instead and tried out for their team, but I was realizing that the high level of competition might not be physically attainable, and I had my sights set on a more reputable education if I couldn't play ball. So I joined some recreational leagues instead, just to keep me on the court. A few years, and a few additional medical conditions, later it was clear that I likely wouldn't have been able to play for long even if I happened to make a college team. My body was simply too unreliable. 

I loved University, I loved academia, and I am proud of everything I have been able to attain. I know it's not always good to dwell on past accomplishments - I mean, it was just high school, right? But it is nice sometimes to look back and remember that I must have had something special - I must have had some talent, and no one can take that away from me. At one point in my life I was good enough at something to warrant being scouted by University scouts - starting at age 13! That's pretty damn cool. 

It's a major reason why being able to get back into volleyball recently feels like such a huge deal after years of using canes, walkers, and wheelchairs - which I still require sometimes. Volleyball was my second true love - second to music. (My husband, Ryan, takes the cake though - don't worry, after meeting you, you'll always be my top true love) ;). 

Life and illness have pushed me in various directions, changed my course, forced me to ride the wave instead of fight against it and I don't regret it, but I do miss it. I also wonder how different my life may have been had it not changed course when it did, or at all. I'm lucky enough to be truly happy, so my wondering never feels like regret or depressed longing, just curiosity and imagination. And I will always have those years that I played, when it felt like I had an entire world of opportunity ahead. 

If you've never truly loved a sport, hobby, or activity, this entire post will likely seem borderline idiotic... but if you have, then you know what it might feel like to have it, then lose it, then have it, then lose it again, then be able to come back to it years down the road. 

New Symptoms

When some new symptom comes up, there is a predictable set of events that has to occur before I finally speak with a physician about it.

• I tell myself it's not really new, it's just that I'm noticing it more ... 

• I go through all of my medications and explain it away as a new, yet predictable and unfortunate, side effect that doesn't need any attention ...

• I attribute it to one of the various illnesses I already have ...

• I tell myself that it's not really that bad, or bothersome, and that I'm just imagining that it's worse than it is ...

• I start to make silent deals with myself - like if it's still there in a couple days I'll send an email to one of my physicians, or if it gets significantly worse then I'll book an appointment with my family doctor, ... OR I'll plan to casually bring it up at an already-scheduled appointment for something entirely different (this is my most usual way to bring up something new because it makes the least big of a deal/is less bothersome) ...

• If it still hasn't settled or is still an issue, then I'll finally bite the bullet, bring it up, and deal with it. 

I think that's why, if you have chronic illness, it is so irksome when a physician treats you like you're being dramatic, making things up, or that it's 'in your head'. I have learned over the course of 22 years (so far), that the only way to avoid that accusation is to try and deal with every single new thing on your own first - for much longer than actually reasonable (although that has its own set of complications depending on the physician you speak with - like the all-too-common 'if it's been that bad, why did you wait this long?').

It's the reason why it took a full week of uncontrollable burping every 5 seconds before I finally went in for an emergency scope, also why I tend to wait until hour 10 of my cyclic vomiting fits - vomiting every 20 minutes - before I go in for emergency treatment (instead of, like, hour six), and why I waited over a week with ringing in my ear and balance issues before bringing it up with my physician. 

I have hundreds, literally hundreds, of these kinds of examples. I'm going to bet that you do too. 

Sometimes it's just because our understanding/experience of what 'normal' is is entirely convoluted. For instance, something as personal as having blood in my stool due to Crohn's Disease - this is normal for me to have a couple times a week. This is not normal for most people. For me - totally expected. So I let other symptoms slide as 'probably normal for me' much longer than I should. 

Random Questions - What Do You Do After a Bad Appointment to Feel Better?

February Chronic Illness Warrior Question: 

What do you do after you've had a bad/tough appointment?? 

I used to go and buy myself something really small - like a new lip-gloss or a hand lotion, something that smells nice and reminds me that I'm okay. Nowadays I tend to stop at Arby's for a guilty-pleasure comfort-food run if I've had a particularly difficult appointment. Then I'll sit and watch total trash tv for a while to decompress. 

So what is your tough-appointment guilty-pleasure routine?

Love What Matters

This past week I was asked to write a condensed version of my health story for the website Love What Matters. 

This website is dedicated to sharing incredible stories written by real people, in varying genres, focusing on love, kindness, and compassion. 

It was a nice challenge to really answer their main question: "what is your story?"

Post RFA Yoga Session

I'm still pretty sore but managed a short outdoor yoga session this morning. What a beautiful day!! 

Quick Tip: Dehydration

With any kind of Inflammatory Bowel Disease, dehydration can be a persistent issue. If your bowels don't work properly, there is a lot that can go unabsorbed, which includes water. Sometimes, patients will need extra vitamin and electrolyte boosts, but other times you can just simply be dehydrated! 

When I was a teenager, I learned that, once in a while, my exacerbated symptoms were simply from dehydration. That's when I started getting regular IV therapies, recommended by my physicians. I'm not talking about those nutrient-rich IV bags that can cost $200-$300 a pop at some luxury naturopathic spa either. I am talking straight, simple, saline - pumped into my veins to rehydrate. 

When I was younger and my Inflammatory Bowel Disease was at its worst, I would go and get a litre or two of fluids through an IV at the hospital. I basically had a standing order via the emergency room so that a nurse would set me up with an IV, I would just sit in the waiting room, and wouldn't even need to see the doctor, because it was a regular thing. These days I usually go once or twice a year tops, but protocols have changed so I am always assessed by a physician. 

The symptoms that I get that tell me I need to top up my hydration include an even faster heart rate, lethargy, dizziness, obviously horrifically dry skin, and consistent muscle cramping in unusual spots. It can be tough to tell, because I already have many of these symptoms, but usually there will be a specific event or the symptoms will worsen significantly over time until I realize I'm feeling dehydrated. I check with my doctor to make sure nothing else is going on, but if everything looks fine, then I'll go in for some fluids - like I did last night. 

I have been feeling dehydrated for quite a while - having avoided going in to Urgent Care for fluids for all of Covid - so I already knew it was about time to get rehydrated. Then, two weeks ago both my husband and I got food poisoning - which means even MORE loss of fluids. Not to mention a few drinks here and there, several severe flare-ups over the past two years, and occasional vomiting. This past week I felt more exhausted and lethargic, more headachy, a bit of a frantic heart rate at times, severe dry skin, and (while practicing yoga) had my triceps cramp up on me from very little activation. 

Time to go in. 

We are lucky here in Canada. I have been to Urgent Care several times now for fluids. At first they are skeptical: 'why can't you just drink more water?'. But once I tell them that: 

A. I have Crohn's Disease with chronic diarrhea

B. I have no large intestine, and 

C. Something happened recently that depleted my fluids drastically (ex: food poisoning this most recent time)

Then they understand completely. So I received 2L of fluid last night to help rehydrate my system - without paying an exorbitant amount of money. 

It's a quick tip for a straightforward way to improve some symptoms. 

Fight the Fusion 2021

That time of year is coming up NEXT WEEK!! 

On Tuesday, April 27th, the 8 day Fight the Fusion week starts. 

Fight the Fusion is all about bringing awareness to arthritic conditions, including Ankylosing Spondylitis, Psoriatic Arthritis, Rheumatoid Arthritis, Juvenile Arthritis, Osteoarthritis, and any other arthritis related conditions. 

I will be making a donation to Arthritis Research Canada at the end of that week, but the goal of this fundraiser is awareness and engagement. 

We have raffle prizes again this year, which will be unveiled during the FTF week. 

Here's how you can win:

1. Post a photo of yourself doing something ACTIVE. It doesn't matter what activity, just anything to get your joints and your spine moving, up to one entry per day. Use the hashtag #fightthefusion on social media and tag me on Instagram, Facebook, or Twitter. If you post each day, that's 8 entries in the raffle prizes. (Only one prize per winner - even if one name is drawn multiple times). 

2. For 5 extra entries, follow me and the sponsors of Fight the Fusion on Instagram.  

3. For 10 extra entries, make a donation of $15 or more to Arthritis Research Canada. There is a donation link available on my Facebook, as well as on this blog (web version). Don't forget to leave your name and email address if you want to be entered into the raffle. 

4. Draw will happen live-stream via Twitch. 

**Prizes are only available to be won in Canada this year. This fundraiser is not affiliated with Instagram, Facebook, Twitter, Blogger, Twitch, or any other social media platform. 

Let's get moving! 

Burping Update

Long story short: I started burping every 5-10 seconds late Thursday night and couldn't stop. My guts felt like they were being filled with air consistently. I went to Urgent Care last Saturday and no one knew what was causing it. I was then scheduled for an urgent flexible sigmoidoscopy this past Thursday. 

Now, the burping has slowed right down. Not gone, but under control. 

As an extra bonus, we decided to try calculating how many incessant burps I belched, correcting for sleep time and slower moments. Turns out I burped approximately 50,000 times within a week. 

The running theory: 

Crohn's flare-up triggered an intestinal Hereditary Angioedema episode that mimicked the Crohn's symptoms, then a dental appointment took that swelling episode further by triggering more swelling in my stomach and esophagus, which caused the burping. THEN, the burping was so 'violent' that it caused esophagitis (inflammation and ulcerations in my esophagus), which, in turn, caused more burping. 

Having multiple diseases is a complete mind meld when these kinds of things happen. 

Here is the more detailed story:

Part I: Crohn's Flare

My Crohn's Disease has become fairly predictable over the past few years. My 'normal' is bathroom breaks 8-12x per day, plus 1 or 2 in the night. It is always loose or liquidy and has been that way for twenty years. When I start feeling intestinal pain, from various triggers, there are a few things that happen. The frequency jumps to about 16x per day, sometimes more, I reduce to a soft food and full fluid diet, and when the blood shows up, that's a pretty clear sign that the flare is almost over. The last several flares have lasted anywhere between one and three weeks, usually not longer than that unless something else is wrong. I should have realized something additional was going on when the blood showed up, stopped, but my other symptoms became worse and even soft foods were causing major problems. 

Part II: Intestinal Swell from Hereditary Angioedema 

A Crohn's flare has caused an angioedema attack before. The intense increase in inflammation has been known to cause swelling in my intestines and even my bladder, plus any external swelling in that general area. Intestinal swells mimic the symptoms I get with Crohn's Disease: more frequent bathroom breaks, abdominal pain, difficulty keeping food in, nausea, sometimes vomiting, and sometimes blood. . 

Part III: Dental Appointment 

The day before the burping started, I had a dental appointment. Dental appointments are notorious for triggering HAE episodes, but because I opt for getting Nitrous Oxide during these appointments along with a benzo, I have only ever had minor swelling episodes. Plus, I make sure to schedule my dentist appointments the day after my regularly scheduled prophylactic injections for HAE. I felt more relaxed at this specific appointment and felt I was in the clear. My usual episode from these appointments (which have been rare) include airway swelling and sometimes facial swelling

Part IV: Esophageal and Stomach HAE Swell

So I have had many swelling episodes, and they rarely present the same way more than a couple of times. The throat swells that I have had that have affected my breathing have some pretty specific triggers and symptoms, but my internal swells - which cause the most trouble - have been widely varying. When the burping started, I thought it might be from the Nitrous Oxide and Oxygen - that maybe I swallowed a bunch of that air while my mouth was wide open. It wasn't until I had to let my hematologist know about the urgent sigmoidoscopy that I even THOUGHT about the burping maybe being caused by HAE. After my sigmoidoscopy (technically a pouchoscopy) showed a very healthy looking J-Pouch, I started to think that my HAE may have more to do with things - including the Crohn's-like symptoms and potentially the burping. I called up to the clinic about getting an IV treatment of my HAE medication. Although I had had several prophylactic sub-cutaneous injections within this burping fiasco, many severe HAE episodes will only be settled by IV intervention. I thought it was worth a shot. 

Part V: Upper Endoscopy

Luckily, the gastrointestinal specialist who performed my sigmoid recognized that the burping and its cause would be better understood by an upper endoscopy. The burping could be caused by a host of problems that would most likely be originating from the esophagus, stomach, or duodenum. Of course, before sticking a camera down my throat, I would require the IV HAE medication anyways. So I got my IV treatment, then was brought in for an endoscopy. The second that that conscious sedation hit me, I was out. Normally I remember some of the procedure, but not this time. The incessant burping was so exhausting that I was happy for the mental break. The endoscopy showed Grade B esophagitis. It is considered to be fairly mild, with some ulcerations between 5mm-10mm. The stomach and duodenum were both fine (apart from some fresh and old blood sitting in the stomach from the esophagitis) and they did reflexion tests which were normal - so that was fantastic. No sign of a stomach ulcer or a hiatal hernia. It was unclear, though, whether the esophagitis was the cause of the burping or the result of the burping, but the esophagitis likely did cause some burping. 

So I was given a requisition to do a stool sample to check for H. Pylori, just in case, and prescriptions for medications that will help heal the esophagus. 

When I went home, the burping had slowed to approximately every 5 or 10 minutes instead of seconds. Over the next two days, the burping just kind of died off and I didn't feel as though my guts were constantly filling up with air. I definitely still feel fragile and like if I make a wrong move it might start right up again, but I am feeling as though I am on the mend. This leads me to think that this was a severe HAE episode, so when I got my IV treatment before the upper endoscopy, it was also treating the source of the problem. 

So now I know - if I start burping nonstop, go and get an IV treatment for a Hereditary Angioedema swelling episode. 

What a whirlwind, and so complicated! 

Thyroid Issues

Over the last couple of months, I have suspected that my thyroid levels were out. I have been having mood swings and uncharacteristic irritability, with weight gain, issues with sweating, tiredness, and then my eyebrows started disappearing. 

That last symptom is usually a very clear sign that it is my thyroid. Disappearing eyebrows and not feeling in control of my weight - those are the two key symptoms for me. 

Except there is one issue: with weight gain, I believed my thyroid was underactive. 

Well, I just got my bloodwork back - apparently my levels are high, not low. 

I also have low Vitamin D again. This wasn't as surprising. It took a year and a half on 50,000 IU per week to get it back to normal.... even though I take Vitamin D drops every day, my body does not seem to hold onto it. 

So tomorrow I start on my lower dose of Synthroid. I am a bit nervous because of the recent weight gain... because it strikes me as odd... but I have to get it to normalized levels. 

Overall, my Hashimoto's has only been on the extreme sides of high or low a handful of times. It can be really frustrating. Once it has gone too high or too low, getting it back to normalized levels usually takes several months. Back and forth, back and forth. 

The symptoms I find most frustrating are symptoms that make me feel as though I am not in control: weight gain or loss, and mood swings and irritability. It's really odd to suddenly feel rage and want to lash out for no reason. Luckily, I have dealt with these kinds of mood swings with other medications over the years, so I can now logically decipher if I am rationally angry or irrationally angry, and then avoid any arguments. At least most of the time. 

So fingers crossed that this new dose will help most of the symptoms. And if the uncontrollable weight gain persists, maybe it's a symptom related to something else. 

Time will tell, I guess. 

Disease-iversary

As of this month, it has been twenty years with Inflammatory Bowel Disease. 

While I have other illnesses that significantly impact my life, here is some of the story of only the Inflammatory Bowel Disease I have been battling. 

Twenty years. 

Let that sink in for a minute. 

Some of the people that I grew up with, and other people my age, now have children the age that I first became ill. 

I woke up in November of my grade nine year thinking that I had the flu. Nausea, stomach pain, and the runs. Apart from that, I was just like anyone else. I had friends, I had crushes, and I worried about the difficulties of not being one of the popular kids. I took the bus to school, I was taking music lessons, and even participated in city musicals. I was deeply involved in sports (namely volleyball, basketball, badminton, and track), went to church on Sundays, and was an honours student. 

After two weeks, the flu hadn't subsided. Not only that, but there was blood. Quite a bit of blood. 

I went to see our family doctor who immediately felt inflammation in my intestines. He sent me for a scope and to a pediatric gastrointestinal specialist. 

I was 14, it was the year 2000, and I had never heard of organs being 'inflamed' before. I had never heard of Inflammatory Bowel Disease. I had never heard the word 'chronic' to describe an illness before. In my small mind at that time, if people got sick, they either got better within a few weeks or months or they died. I had no glimpse into the world of constantly ill; of incessant pain. I was ignorant to its existence. 

After my first colonoscopy/endoscopy combo, I was sent to a bigger city centre at a children's hospital to see another specialist. The official diagnosis from his office came in January of 2001. 

That year I missed over 200 classes. 

I learned what it felt like to be in the 5% of patients who get pancreatitis from certain medications, and was hospitalized for that adverse effect four times that first year. I also developed liver problems, went on a corticosteroid, and had to cut nearly everything out of my diet. I learned what it feels like to have no control over one's body - including weight, bathroom breaks, pain, nausea,  mood swings, and energy. Every month we would drive to see my specialist in the big city and I would have a sigmoidoscopy right there in his office, and I had to get bloodwork done as much as twice a week those first few years. 

I went from being a normal 14-year-old girl going through puberty to another beast all on its own. (Puberty and Prednisone do not mix well). My parents became friends more than parents. Our conversations changed - our whole world had changed. 

The doctors spoke about removing my large intestine several times over the course of the first three years. I was reluctant. I was damn stubborn. I wanted to try every possible avenue first. But when severe dietary restrictions didn't work, when I showed allergies to most of the medications, when I dealt with incontinence several times each and every day, when my body could not function without Prednisone, and when the blood just wouldn't stop, surgery was inevitable. 

My large intestine was removed around a week before my 17th birthday. 

It had actually been scheduled on my birthday, but they found out so they moved it up instead.  

I woke up with a long line of a vertical scar (this was before it could be done laparoscopically), and stoma and ileostomy bag on my stomach - I was 3 feet smaller and 6 lbs lighter (and a picture of my intestine and appendix for a souvenir to prove it). 

Unfortunately for me, the ileostomy was fraught with complications. The Colitis around the ileum never settled down. It didn't settle down in the cuff at the other end either. I was also allergic to the adhesive to keep the bag on my skin. So I had the choice of breaking out in painful and large welts or risk leakage. Turns out, I dealt with both. Due to these complications, it meant that I could not swim or bathe with the bag attached, so I could only shower every five days when I would change my ileostomy bag. 

It's safe to say that, with all of these complications, I felt disgusting. All the time. 

Then, about two months before graduating high school, the ileostomy was reversed. I got to be off of Prednisone, I got to enjoy my graduation, and was hoping to be 'cured'... or as cured as one can get with Ulcerative Colitis. 

Only a few months later, I was having similar (but not identical) symptoms. I was diagnosed with Crohn's Disease that summer. I also continued to have chronic inflammation of the leftover cuff and the newly formed j-pouch. A makeshift cure was no longer in the cards. This was for life. 

Then began a domino effect of other organ complications, other diagnoses, and a laundry list of new symptoms to fight with. It is a battle every day. It is the battle that started everything else. Inflammatory Bowel Disease was my body's trigger to then fight so many other organs and tissues. 

One day the picture of health, the following day showing signs of a flu, one month later being spoken to about surgeries, a potential need for a liver transplant, inflammation in my intestines and pancreas, hospitalized for allergic reactions, losing blood... missing school, missing lessons, missing sports events, and living an entirely new life while trying desperately to hang onto the life I had been living, and doing every single possible thing to try and feel better. 

As of today, my missing organs include by large intestine, appendix, gallbladder, uterus, and both ovaries. 

The question is: can I do another twenty years of this? 

Yes. Yes I can. 

Hell, give me forty. Give me fifty. 

I have had my doubts before, of course. Who wouldn't? But I know I am capable of continuing to fight. 

This year I turned 34 years old. I am battered and bruised, scarred, and taking life day by day. I've made it twenty years with this awful disease, and I'm still going. The most important thing is that I have found happiness and fulfillment within my life. Not just in spite of it, but also because of it. 

Let's go another twenty years, shall we? 

Dreaming of Pain

I always find it fascinating how my subconscious interprets physical pains. 

Whenever I go through a flare-up or a painful procedure, you can bet that I will have dreams about pain. 

For instance, when my Crohn's flares up, I usually dream of being stabbed in the abdomen. The sharp pains of intestinal cramping is interpreted, in my mind, as being stabbed with large blades. At least that's how my dreams tend to go. 

When my joints and muscles are especially painful, I have had a wide variety of dreams that range from being stung by thousands of wasps at once to falling on a bed of needles or hot coals. 

This latest one, though, is an entirely new interpretation (to go along with a new procedure). This week I went through my first Radio-Frequency Ablation - done on the nerves in my left SI Joint. My dreams last night were very specific: I was lying face down and someone was taking a chisel to my lower back. The chisel itself was burned at the end in fire and was hammered into my back, one agonizing centimeter at a time, using a rock. 

How do your dreams interpret pain? I would love to hear the strange and fascinating ways the mind represents chronic and physical pains. 

What to Wear to Procedure Appointments

Picking out an 'outfit' for certain procedures may seem completely ridiculous, but there are some very compelling reasons why your procedure outfits can be attributed to comfort. 

Here are some of my outfit tips depending on the appointment/procedure: 

Dentist

Wear your hair down or in a braid. Avoid buns or ponytails. When you're lying down on your back, the last thing you need is some hard lump of a ponytail digging into your head. An outfit with socks is preferable because it gets cold in those dentist chairs. 

MRI/CT Scan/X-ray

Sports bra, leggings, and a warm top. Do not wear anything with metal. That way, sometimes they will allow you to wear your own clothing instead of having to change into a gown. Avoid jewelry and, again, wear your hair down or in a braid. 

ER Visit

If at all possible, go in sweatpants, wear socks or slippers, and bring a hoodie. This is for comfort and for appearance. Unfortunately, showing up to the ER in dress clothes, work clothes, or put-together at all when you have invisible disease will often result in 'looking too healthy to be at the ER'. It may not, but (speaking from experience), an outfit can often contribute to misunderstanding the severity of the situation. 

SI Joint Injections

These injections are brutal (whether they are Cortisone injections, nerve freezing/ablation, etc...). The last thing you want to be doing is moving around too much afterwards. In this case, wearing soft underwear and a dress are the best options. I wear my hair up in braids to keep the hair off of my face without pulling too much (and for a mask to stay nicely), with a shift dress and a sports bra. The hair is important because if it's in my face when I begin to feel nauseated, it makes it worse. With the dress, after the procedure, I don't have to get undressed and re-dressed when my back is so incredibly sore. All I do is let my dress down. That's it. No bending, no fiddling, no jean waistband or buttons, nothing tight to my skin. Comfortable. 

I also specifically wear dangly bracelets or a few rings to give me something to fiddle with so I can distract myself. (Seriously, diamonds aren't just for special occasions, sparkly jewelry helps with distracting from pain 😉). 

I am off to my second appointment of nerve freezing today, and this is my outfit: 

Nerve Freezing

Last week I had my first appointment of having my nerves frozen in my SI joints in preparation for nerve ablation. 

The preparation for the ablation is brutally painful, but necessary. In order to ensure that my body will tolerate severing the nerves, they need to test my body's response to freezing. 

Essentially, if I have some relief without a great deal of complications, then we can go forward with ablation.  

Here is how the appointment went: 

Mask on, I was prepared for a procedure similar to cortisone injections into the SI joints. I was unaware, however, that they would be injecting both sides AND injecting freezing into multiple locations. Luckily, I found this out before the procedure began. 

I had to be face-down on the table as the doctor and technician prepared my back. I wore a dress for easy access (and so that I wouldn't have to try to put pants on over the injection sites afterwards). The technician and the doctor were both very calming and as gentle as possible. Unfortunately, shoving a needle into an inflamed joint to freeze an irritated and inflamed nerve is, very obviously, going to be painful. 

I don't want to deter anyone from getting this procedure done, but I also want to be completely honest. The procedure was brutal. After the first couple of injections, I became extremely nauseated, sweaty, and felt as though I may vomit from the pain (thinking in my mind that I was about to vomit into a mask), but I was able to push through. I know that I could have asked the doctor to take a second, but I also wanted the procedure over with. 

He was extremely efficient and was very adept at trying to get me thinking about other things. 

At one point, the needle grazed the nerve, and I felt a 'funny bone' type of zing down my right leg. It was not as painful as some of the other sensations, so it acted as a kind of odd distraction. It was fascinating, so I was actually happy for that particular moment. 

All in all, the needling itself lasted no more than 15 minutes (times vary for each patient of course). So I kept focusing on my breathing - trying to breathe out heavily during each entrance of the needle - and tried my best not to flinch or tighten my buttocks too much. (I find it amazing how, if properly prepared, we can stay relatively still as someone is inflicting pain). 

Unfortunately, these freezing tests, when done without the use of Cortisone, only provide relief for approximately six hours. So it doesn't quite feel worth it. It is a means to an end, though. The relief from actual nerve ablation could last 6 months or more! 

I have one more set of freezing tests and then the nerve ablation will be scheduled. I'll let you all know if I have found it worth it once the relief from the ablation is evident (likely a few weeks after the procedure itself). 

Summary: 

Nerve freezing feels similar to Cortisone injections, with a bit more of an intense pain during the procedure and more locations. So it is a bit more painful, a longer procedure, and multiple injection sites. BUT it is also a quick procedure. Now that I have been through it once, I am more confident going into the second appointment. It will be rough, but it doesn't take long. 

Fight the Fusion 2020 Update

Last year I started an annual fundraising campaign to help bring awareness to arthritic illnesses like Ankylosing Spondylitis. We had a bunch of amazing prizes, many from local vendors, and encouraged people to show how they #FightTheFusion in their daily lives and make a small donation to Arthritis Research Canada. 

While fundraising for various chronic illness organizations still remains a necessary part of healthcare research, the situation with Covid-19 has become a top priority. 

Although we have a gorgeous donated photo of the Aurora Borealis that was going to be given as a draw prize, we knew early on that this fundraiser would not look the same this year. 

So instead of campaigning for donations, we are asking that you continue to share your photos of how you Fight the Fusion AND tell a candid story about how you are handling the isolation. We are not asking for donations this year. I think 2020 will be a year where every single person struggles financially and medically. Show us how you are fighting your own medical battle with acts of kindness, uplifting stories, funny or inspiring isolation photos, and how you are staying safe during a novel crisis. Show us why being #highriskcovid19 is not all bleak and boring, but instead how much strength it takes to stay calm while being high risk. 

The donated photo will be put into next year's Fight the Fusion week draw prizes. 

Fight the Fusion week officially starts on April 27th - this year will be an awareness campaign only. We would love your participation! 

Stay safe. 

Struggling with Isolation

Self-isolation and social distancing is relatively simple in its concept, and difficult in its execution. 

As I have mentioned on here before, the idea of self-isolation for the preservation of health is not new to me (or nearly anyone with chronic illness). Since becoming ill nearly 20 years ago, there are some themes that have continued that others are just beginning to experience right now. 

Some of these themes include uncertainty of financial security, lack of job security, limited options for exercise and leaving the house, more time spent bored at home but unable to do much, and paranoia over every little symptom that arrives or changes. 

Putting all of that together, then adding the awful combination of lack of sleep, extreme dietary restrictions, and feeling brutally ill all day every day, there should be no wonder why people with chronic illness often suffer from depressive episodes.

Just because I have become accustomed to the self-isolation that the general public is now asked to adhere to does not mean that I find it easy. It is not easy. It is agonizingly difficult. The really unfortunate part right now is that I have to ramp up my isolation because I cannot trust the general public to follow these rules. 

Many issues are weighing heavily on my mind these days. Obviously I am concerned for the health of my family, my friends, and myself. I am concerned for our vulnerable population, who are likely going to be expected to quarantine for a much longer period of time than expected (which is understandable, inevitable and infuriating - like adding insult to injury).  

The other issues that concern me, however, are more subtle to those who are not consistently ill. 

Medication insecurity is one. I do not know if there will be shortages of medications that keep me alive. This is no hyperbole, I could wind up in a critical state without my medications. I am also having to be excessively careful with my own health. 

On any given day, I could suffer a life-threatening throat swell, a severe flare-up of several illnesses, recurring infections, and episodes that normally send me to the ER. There are certain activities of daily living that often lead to these terrifying episodes that I am now avoiding as much as possible - like eating solid food, certain physical activities, or giving in to several emotional extremes. I have to keep myself calm, I have to keep my diet very minimal, I cannot push my body too far with any activity (I mean activities like doing a load of laundry or cooking dinner), and I have to be particularly careful about becoming dehydrated. Simple things, like these, are often what lead me to require emergency care. I am desperately trying to avoid needing that care. 

The hard truth is that no one is doing all that well right now. Everyone who has been isolating is struggling. Adding in an illness (or multiple) that never goes away adds an additional layer. 

We are being asked to stay away from friends, family, and the general public. 

We are being asked to change our routines and behaviours for an invisible disease.

We are all facing a novel situation - no one knows how this will all unfold, but every single person is being criticized for their response. 

We are all being asked to forgo all of our regular daily activities even if people have zero symptoms.

We are all concerned with finances, job security, food security, and walking a fine line between over-reacting and underestimating the power of this pandemic. 

We are all being asked to trust in our government and healthcare officials - people who have not always given us much reason to offer our trust. 

We are all being given mixed messages incessantly on social media, which is then compounded by the fact that we are all much more exposed to social media. 

We are all bored, we are restless, we are desperate to go outside and be social, but for the safety of our neighbours and for the greater good, we are asked to bury those instincts and come up with new and creative ways to access the outdoors.

So here are my current struggles - many of which are ongoing and began long before this virus ever reared its ugly head, and have now become amplified: 

• My sleep schedule is glaringly sporadic and insufficient. Insomnia is wreaking havoc on my body and mind.

• My IBD seems to reverted back to an old 'normal', one that allows for very little solid food. When I DO eat, from sheer desperation and exasperation, I suffer the consequences, which are often unbearable. 

• I am weak. Not just my immune system, but my entire body is already fighting a life-long battle with a staggeringly long list of symptoms. My body is exhausted. With this exhaustion logically comes a blow to motivation and the ability to participate in anything productive or active. 

• I am on immunosuppressants and have had the thought of dialing back those doses to give me a fighting chance against Covid should I face it. I know I am not the only person concerned about this. 

• I have appointments with specialists and plans for medication changes, but I have no idea what my care looks like going forward. Medical necessities, like appointments, regular bloodwork, updated scans, action plans, and crucial regular maintenance have all been postponed indefinitely. I know and understand that my normal/daily chronic illness needs are not a priority - and they shouldn't be. I have survived much worse than what I am currently dealing with. It does weigh on my mind, though, to just sit at home and take care of myself, crossing my fingers that when I do finally get to see my specialists that there will not be any irreversible damage done to my system, and hoping I can avoid catching this novel virus. 

So I am sick of not being able to eat properly. I am sick of not being able to sleep normally. I am sick of spending half of every day in the bathroom, suffering the painful consequences of trying to eat. I want to get outside, be active, be productive, learn something new, bake, cook, play music, sing, run errands, catch up with friends and family, take the dogs for long walks, and a laundry list of other things - but my body is simply not allowing that. All the while watching the unfolding medical situation that is plaguing our entire existence.

None of this is easy. 

However, I am willing to continue in this current state for several months. I am expecting to live in this manner for months and then a little bit of an improved existence once this virus is less rampant: for the protection of my own health, for the protecting of those around me, for the greater good. There are moments in life when certain desires, or perceived necessities, are not worth the risk that they pose. 

Please stay home. 

Everyone is suffering. Everyone is having a difficult time. We do not want to extend this suffering any longer than what is necessary, but the more we defy guidelines that are temporarily for protection, the longer this will drag out. 

Stay safe.