Waking up STRESSED

Ever wake up feeling utterly stressed out?

It's like everything you have on a to-do list all-of-a-sudden becomes overwhelming. Then, even more frustrating than that, you wake up restless but super sick...

So there are 20 things I NEED to get done this week, but today I feel awful... but also restless. So I can't just lie in bed like I should because I have too much to do... but when I actually left the house to go get a few things done, I essentially turned around and went straight home because I could not physically accomplish anything. 

So I am too sick to go and do anything by myself - I definitely won't drive anymore today.
My handicap permit is in Rj's truck anyways.
I am too restless to just lie down and relax.
My to-do list is ever-growing instead of shrinking.
I need to do SOMETHING but I can't tackle anything on the list so I end up doing random things that don't really help except to reduce my restlessness. (Like continuously talking but not really saying anything, or walking in circles just to keep walking).

On top of all of that, we did manage to do our Costco trip (with the wheelchair of course) ... but they did not have a LOT of what we needed. So the trip itself was terribly exhausting and put me in a total funk today... because we'll need to do a second trip somewhere else that will ALSO be exhausting. And it all needs to get done this week...
So one trip turns into two and cuts into time that was supposed to be spent getting other things done....

Aaaahhhhhhhh

Frankly it feels like I woke up on the wrong side of the bed to the bombardment of my own thoughts and stressors and lists. So many lists.
So many lists.
Lists lists lists.

Time maybe for some breathing exercises and yoga and essential oils and anything that will help me relax... and put away my lists until I feel well enough to tackle them.

Covering Your Butt

Dealing with health issues includes many frustrating situations.
You are attending appointments constantly, writing and submitting paperwork, claims forms, banking and financial information, managing prescriptions and physiotherapy exercises. You and your pharmacist are on a first name basis, the bulk of your memory is taken up by the names of medications, illnesses, allergies, as well as your health number, your usual blood pressure and temperature levels, and phone numbers for physicians, hospitals, emergency contacts, and someone who is always willing to check in on your pup when you get stuck in Emergency.
You have an entire section of your home dedicated to medications, sharps containers, and over-the-counter substitutes for those particularly dire weekends when you run out of medications.
You often have several different medical journals: your main one in which you try to write everything, your pain scale journal, your food journal, your sleep journal, perhaps specific journals for flareups of single illnesses, plus a trigger diary.
You also have apps on your phone: alarms for your medication times, alarms for your injections, and you keep your appointment schedule on a device AND on three separate areas physically written down.
You try to document every phone call, every conversation, and every meeting with any of your health professionals and insurance providers, but let's face it, some get missed. You'll receive a call to reschedule an appointment while you are at the pharmacy or in another appointment and forget to write it down once you got home. Or maybe you will write an email update and somehow forget to press the SEND button (it happens, believe me!).

In addition to all of that, you wind up juggling several different insurance providers if you are one of the unlucky few who are physically incapable of working. (There is nothing relaxing about being far too ill to be employed). We may find moments of relaxation - like anyone else - but our pain never goes away. Our pain and nausea and excessive fatigue never give us a break. So we juggle our own struggles with insurance companies that are meant to help, but who also lay the guilt on thick.

You can be as diligent as possible. You can do everything you are supposed to do. Things can still go wrong, no matter how forthcoming or how great of a patient or client you attempt to be.

Here is the worst part of it all.
Even though you write down every conversation and every appointment, even though you do as you are expected and go above and beyond what is asked of you, you are still required to do more - and if anyone else makes a mistake regarding your chart, it is still your fault and your responsibility to ensure the error is rectified.
As an aside example: when I was about to receive an infusion of a biologic several years ago, I politely mentioned that the veins in my hands roll, collapse, or just plain do not work. I mentioned that no IV had been successfully placed in my hands for approximately 8-10 years. The nurse that afternoon still tried to use my hand veins a couple of times - then proceeded to tell me that it was MY fault...That because I was nervous and did not sufficiently warm up my hands, that I had consciously made my veins impossible to work with. As an added slap in the face, she also told me that had we been in the U.S., I would have been forced to pay for the discarded needles.
I refrained from causing a scene (of course), but I did disagree with her and reminded her that I had informed her of my uncooperative veins and that she would have been paying for the needles in that hypothetical situation.

Or how about that time when a physician did not look at my chart, and prescribed several medications to which I was very allergic. Although the medications were administered while I was under anesthesia, it was insinuated that I had not properly informed him of those allergies and, therefore, he was not to be blamed. I had given them my personal list of allergies, wrote those down on my admission chart as well, had them clearly printed on that red hospital bracelet signifying allergies, AND it had all been previously in my chart from earlier appointments and surgeries. Yet, in that circumstance, it was still considered to be the error of the patient.

These are very very tiny examples.

There are only a few pet peeves that I have that irk me to my very core:
1. When someone else manages to spend my energy for me. Like, in the spoon theory - someone spending my spoons for me.
2. When I am held accountable for another's mistake - one which I did my best to rectify or even PREVENT.
3. When I am judged for no justifiable reason.
4. Losing privileges or access to vital resources or medical care based on the abuse of others. (Falls into a similar category of being punished for another's conscious decisions).
5. Knowing how many people abuse the system and who walk away unscathed, while those who follow the rules and protocol are scrutinized to the harshest degree ...

Being this ill is similar to a full-time job - except we never get a break or a holiday away from our illnesses. We are forever juggling numerous aspects of illness.
Part of that is covering your ass.
This means:
• Ensure you leave a paper trail of when you have done what has been asked of you.
• Record ALL telephone conversations - mostly when it involves health, coverage, money, insurance providers, government programs, and even going as far as recording instructions given by physicians.
• Include your medical information in several places.
• Always submit a FOIP form to access all of your records - this helps to prevent or rectify errors in your care.
• Memorize as much of your medical history as possible - very rarely is the entirety of one's chart actually read through in detail.
• Scrutinize every contract/document or anything you must sign in order to continue. Yes - read the dreadfully long Terms and Conditions. Tedious, but it may save your butt one day.
• Keep a close eye on all things financial. Be obsessive. Be cautious. Ask questions. Request clarification if you have ANY confusion.
• Go through your insurance coverage with a fine-tooth comb. KNOW what is covered and what is not, know what you deserve.
• Re-read contracts currently active every year to remain up-to-date on the policies and guidelines. It would be beneficial to go one step further and educate yourself on the legislation that governs these contracts.

I know - it's more work.
It is worth it, in the end, to have in your possession a clear cut record of how your medical situation is being handled. Then, in the event of a monumental error, it is less likely that you will be held accountable.
On the flip side of the coin, you can do all of the above and still learn that it was not sufficient to release yourself from accountability - even if the error was not your own.
After 17 years being a constant presence within the medical system, I am still learning hard lessons.

More than anything else, I think I get the most bothered when the guilt and responsibility is placed on me, the patient, who is often too ill to even leave the bedroom let alone record and jot down every single conversation with every single health professional. I do not like feeling guilty when I have done nothing wrong.

Such is life.
This will happen again, I'm sure, though unlikely in the extreme position I currently find myself.

My advice to any patient with chronic illness:

Treat every phone call, appointment, and email as though you will one day require proof that that conversation took place.
If you cannot reach the individual you are expected to speak with, keep calling. Day after day. Week after week. Leave voicemails (record each and every one of those as well), and ask to speak to an additional party if your phone calls/emails are not returned.

Medical care does not function as a regular business.
If a cashier at a grocery store accidentally forgets to charge a person for part of their purchase, they would not attack that customer a year later and claim that they have committed theft - especially if the consumer pointed out the error and was still ignored. If I go up to a cash register and the item I am purchasing is scanned in incorrectly (like scanning in only two items when there were three), who is held accountable? If I went up to the till and told that person I had three items before scanning, but then was informed after protesting that they were scanned correctly, then should I be flagging down a supervisor or manager? If I am told that the amount is correct and that I was mistaken (more than once), should I still be tracked down a year later to repay them for the third item?
If a waitress bills a table incorrectly, those customers are not tracked down months later.
Even if a BANK makes a massive transfer error to a completely different person, often that money cannot be retrieved. This is particularly true when the individual who benefitted from the error notified the institution and was informed that there was no error.
If you accidentally hand someone a hundred dollar bill when you meant to give them a twenty, told them to keep the change, and waved them off when they attempted to tell you about the mistake, would you treat them like thieves who were purposely, and knowingly, being deceptive?
If you accidentally ordered 200 items of a product online when you meant to order 20, was asked if the number was correct multiple times and was explained that it was a final sale, and had three steps to read before entering your financial information, is it the company's responsibility to rectify the error? If you approved the amount being charged after reviewing your order, would you call that company fraudulent once you finally noticed your mistake - weeks later when the product arrived?

Some of these issues have grey area, as do all situations, but some of this must seem logical.

Every single one of us has made mistakes, there is no doubt. I, however, believe that (in most situations), the person or company the most responsible for the error should be held accountable - especially when the client attempted to prevent or correct the error, was unaware of the error, and did even more than what was required or expected.

I am in a sticky situation.
My only mistakes in this singular event are as follows:
A. I was not recording each and every conversation a year ago.
B. I expected that the answers given by the individual I was speaking with were correct.
C. I assumed that the person managing my chart was the expert in these cases at that institution (compared to myself).
D. I failed to re-read a contract I thought I understood - one which I had signed 7 years prior to this error.
E. I failed to get all answers and conversations reviewed and returned in writing.
F. I put my trust in an institution to whom I am solely a file number and a dollar sign.
G. I did not call repeatedly day after day to make sure that I had been given the proper and correct information in two separate conversations.

    My biggest mistake was assuming that, when I asked if that person required additional information and was told 'no', that there really was no other information required. I held up that information willingly and did my due diligence, and was told that it was unnecessary. My mistake was believing it.
I guess it was my responsibility to fully question that person's authority, speak to the supervisor instead, and verify at every level that what my superior was telling me was accurate.

It is sad when you put your trust and faith into someone who you believed was there to offer assistance, and then are wrongly labeled deceptive.

So, patients involved in the world of chronic illness, cover your butt!

The Jellyfish Float

One of the most relaxing activities is the jellyfish float. It is also known as the 'dead man's float' or the 'survival float'.
It's the ability to float in open water in a relaxed position on your back (or on your stomach while holding your breath).
It is a vital part of swimming lessons, as it can save your life if you find yourself in open water and you become exhausted. The air in your lungs can keep you afloat and the slightest movement to tread water is a much better alternative to frantically treading water and wearing yourself out.

I don't get to hang out in pools very often. With my unfortunate reaction of hives from the shortest exposure and a respiratory reaction from longer exposures, I can only go swimming after a decent dose of antihistamine followed by a thorough scrub.
I grew up a total water-baby though. I spent the vast majority of my time in lakes. We had a little boat and we'd go tubing and skiing and spent almost all of our time in the water. When I was a kid I would go swimming all the time... and getting to go to the West Edmonton Mall Waterpark (and Galaxyland) was one of my all-time favourite vacations. The only problem was that every time I went, I would always end the 'trip' coughing violently nonstop, to the point where I could barely breathe. Connecting that reaction to my wheezing during other activities, my early doctors actually believed I had asthma, and treated me for it.
Nope.
Good old fashioned allergy.

So now my excursions in water are less frequent and even more precious. The water itself helps the pain in my joints, and I can actually get some decent exercise in without increasing my pain to unbearable levels.
But my favourite part of being in the water - the most relaxing part - is the jellyfish float. Closing my eyes, rolling onto my back, submersing my ears, and relaxing every muscle in my body as I effortlessly float. The noise, the pain, the treading water, all seeps away.

Tonight I made one of THE best discoveries about our home.

My bathtub is deep enough to do the jellyfish float. In my own home. Then - to add to the already heavenly feeling - if I fill the tub halfway, I can float while I keep the tap running. That sound during that float was beyond relaxing.

Amazing.

It might be weird, but I absolutely love it.

New Material

Rj asked me today how I somehow find new things to write about nearly each day.
How do I come up with new material every single day?

Well, there are a few reasons.

Primarily, drawing inspiration from real life offers a never-ending stream of material. Having several chronic illnesses offers new stories, new experiences, and new ways to cope. Even if all of my illnesses were to go into remission, or if I were to be miraculously cured, I have had enough varying experiences already to continue telling stories day by day. A life revolving around medicine, diet, health, coping skills, and illness, will always have a place. I guess I should count myself lucky.

Secondly, changes in health and medicine happen every single day. There are new discoveries, new treatments, new medications, and controversy around all of the above, happening every day. I see about five to ten stories each day as I scroll through any social media platform about a new medication, a new perspective on an old treatment, and a new health craze that touts an ability to cure the incurable. Science surrounding chronic illness also provides a consistent stream of new information to discuss.

Thirdly, we all evolve. Our minds and our opinions evolve over time through experience - sometimes bitter experience. I am certain that if you look back at some old blog posts, I was probably really hopeful and optimistic about cupping as a treatment to help the muscle pain and spasms in my back, or maybe a strikingly negative view on the use of pain medication. At one point I was convinced that the Ankylosing Spondylitis was a misdiagnosis and that I simply had a generic form of arthritis, for instance. Oh how things change. As we go through life and go through new situations, our perspectives will change. They may change slightly, they may change drastically, but little changes will always occur. So I don't even necessarily need a new symptom to arise, a new treatment to try, or a new illness to break me down - it might be the exact same pain and symptoms that I have experienced for years and years. And years. But my viewpoint about these issues will change in unexpected ways over time. In this way, I will always have new material to discuss. 

Trying to write every single day takes dedication.
Writing about illness as I am going through it each day is a no-brainer for me.
Suffering with chronic illness and trying to keep my symptoms bearable and my illnesses relatively stable IS a full-time job. Writing about my daily experiences with illness might require a few minutes out of my day every day, but it isn't exactly a 'job' for me, because I don't have to fabricate anything. I write what I know.
It is much different that writing a food blog while trying brand new recipes on a regular basis, or an exercise blog that requires new videos and new routines that no one has thought of, or trying to write fiction or poetry on a daily basis.
Illness is my life. Well, a part of it anyways... a large part. It is already happening.
So I take care of myself and I write what I know. That's it.

I can never truly say that my life is boring. I might be a home body and I may stick to playing board games at home and relaxing while watching the latest tv series. I may stick close to home with Dex and Rj, but when it comes to how I feel, my life is never boring. It is unpredictable, messy, often painful -> it is anything but ordinary.
What's more?
Nothing that I go through is the exact same as someone else's experience. My daily blog posts are not going to be like everyone else's because the unique combination of illnesses, medications, and medical history is unlike anyone else's.

Writing daily takes dedication.
Being chronically ill provides new information constantly. Put those two together and you have a daily medical blog that is personal and still, somehow, relatable.

Happy blogging!

Pride and Accomplishments

It is amazing how different 'levels' of accomplishments garner a sense of pride at different moments in a person's life.
When you are little, pouring a cup of milk straight from the jug into a real glass was a feat to be ecstatically proud of.
As you get older, your goals and plans and accomplishments become more grand. Before you know it, you feel pride less and less from accomplishments that would have had you fully celebrating for days when you were younger. Soon, what felt like accomplishments at one time now seem like failures.
When something happens, when we become injured or develop illness, we can get so caught up in thinking about what we used to be able to do that we forget to give ourselves a break - and a little bit of credit.

Today I am giving myself credit for what I was able to accomplish today, despite how horrendous I am feeling.
We spent a couple of days with my parents and friends, and although it involved mostly sitting and talking, it was still busy. My pouch is irate with me and showing its anger VERY clearly, my joints are protesting every single position and movement, and I now have a migraine - most likely from the drastic weather changes.
So when we got home, I went IMMEDIATELY to the bedroom and crawled under the covers wishing that I could cuddle away all of the pain and nausea and bathroom issues.
After a three hour sick sleep, I wasn't sure I would get anything done.
But then I thought:
RJ is just as exhausted as I am and he is working tonight. He has a procedure coming up and we both have a busy week. I need to be a good little housewife and do something productive.

So - I rolled myself out of my blanket cocoon, diffused a few fresh-scented oils, splashed water on my face and vowed to get moving.
• I emptied the dishwasher.
• I unpacked both of our bags.
• I put a load of laundry in (and accidentally washed some money which is now airing out)
• I made a batch of Marbled Brownies & Blondies
• I washed all of the dishes that I used to bake the batch of brownies.

Those are really small accomplishments in the grand scheme of things. But the thought that RJ will come home to an empty dishwasher, clean clothes, everything unpacked and organized, and a clean kitchen? Not only that but that having these things done means that we can BOTH sleep in tomorrow - this feels damn good. Add in how awful I really am feeling and I am definitely filled with pride.
My goal is to be a good housewife.
Today I achieved that goal.
💙

Good Food

Good food is a relative term.

Good food has a different definition for everyone. Of course, food like deep fried anything or soda pops can't exactly claim to be 'good' food, so there are some universal truths there, but good food can mean a lot of different things.

Right now, my Pouchitis (the chronic inflammation of the J-Pouch that was created with my small intestine when my ileostomy was reversed) is flared up. It is flared because I am not allowed to be on my antibiotics right now, because I cannot be on them for the cortisone injections into my joints. (There are always so many rules!).
Have you ever been in the midst of eating something, then go to the washroom and that exact food you're eating has already passed through your system??
That's one of the many possible variations if symptoms someone with any kind of Inflammatory Bowel Disease can suffer from. Undigested food. I think my record is about 10 minutes. You may shake your head and say that that's impossible, but it's not. It's even in my medical records that during several barium swallow diagnostic tests, the time it took for the barium to go through my system (which *should* have taken about an hour or more) was between 10-30 minutes -> several different times.
But here is some extra confusion.
My Crohn's Disease, which essentially affects anywhere in my intestines above the J-Pouch has different symptoms if it is flared. With my Crohn's, the pain from trying to digest food usually starts within about 5 minutes after eating and can last hours. With Crohn's, instead of just ejecting the food, it works harder and harder to digest it, so it can be painful for as long as it takes to get through several feet of intestine. It is brutal.
With the J-Pouch, my body simply ejects the food. It takes half the time to go through my system, if not less, hits the pouch, causes an intense succession of cramping, and then ejects it, whether I am ready or not. When my pouch is flared up, it's like the food is on a waterslide.
Weeee.
Except my innards are the slide and take the brunt of the pain.

Methotrexate (the medication that makes me an easily-bruised peach) is the only treatment that settles my Crohn's. It has never put me in remission, but it does keep it sort of stable; predictable at least.
Antibiotics, however, are what keeps my J-Pouch relatively stable. Methotrexate has no major effect on the pouch, and the antibiotics have no major effect on my Crohn's. Weird, right?
Hey - whatever works.

So, when I am in a bad Pouchitis flare (yes I realize the disease name sounds fabricated... it's not. I promise you), 'good food' is any food that I can keep in my system for longer than 20 minutes. OR, if the former doesn't really seem possible, then 'good food' is anything that doesn't cause an excess amount of pain while it travels on the waterslide. Good food means anything that I can manage to eat without bawling my eyes out. Good food means anything that I can possibly get some nutrients from.

Last night I made myself some pineapple curry chicken pasta. The pineapple tasted delicious - I love pineapple. Sure the curry has milk and butter and all that goodness. Sure the pasta has gluten. But the dinner tasted damn delicious and dinners like this make me WANT to eat despite the pain and the 20 trips to the washroom between bedtime and morning. It may not stay in my system long... at all... but it gets in there. That's the point. When my pouch is flared, THIS is good food. Tasty food. Food that makes me want to eat.

When my Crohn's is flared up, 'good food' means anything I can eat that will cause the least amount of pain. This doesn't often mean food that is considered 'healthy'. Things like fast food fries are AMAZING during times like that. Why? Because they slide right through my system. They are so bad for me that my body won't even try to digest them - which can be a nice reprieve. The intestines NEED a break when they are flaring up. Usually that means fluids (like Boost and pudding and soup), but sometimes you have to indulge your taste buds while also resting your tired and utterly irate intestines.

'Good food' can mean vegetables and food that is widely considered healthy, but it can also mean whatever the hell your body can handle. It can mean whatever hurts the least but still gives you some nutrition. It means whatever your specific needs are.

Today, good food for me means Boost, pineapple curry chicken pasta, apple crisp, Gatorade, and maaaaybe some Easter chocolate.
Whatever I can eat that makes it worth the pain. :)

Dare to Dream

I had very strange dreams last night. Crazy dreams. One was kinda good, one was weird and bad but not anywhere near night terror kind of bad.

◇The good one was about football.
Not NFL though.
Recreational League.
Apparently I decided to join a league, on a team with several of the people I used to play league volleyball with, and we played in a massive year-end weekend tournament. The dream mostly took place at the wind-up banquet. My original position was wide receiver (just like my Dad in real life), and I was pretty damn good. I wound up getting 4th overall in the league for that position (out of men and women). Then, some key players didn't show up, so I had to fill in on defense as well. I got 6th overall as a defensive tackle. (This was a very specific dream). I received some cash, a prize, and then some extra raffle tickets to put in as many of the 10 raffle prize boxes I liked.
I never did get that far in the dream.
I was handed my prize and envelope for 6th overall, smiled, went back to my table, and woke up!◇

Sometimes vivid dreams become intense and frightening, especially after taking a certain medication. This one, however, turned out to be just plain fun.

I had a fairly awful sleep overnight. I was up multiple times for the washroom - my intestines are downright ticked off, despite the fact that I stuck to Boost, rice, and apple sauce all day - and I got paranoid a few times. Medication oops.
Then this morning, as my alarm went off to take my medication, I was reluctant to move. I had FINALLY found a comfortable position, and I knew that if I just simply turned off my alarm and closed my eyes, I would be back asleep immediately.
I cannot miss my medications though, otherwise my entire day is messed up.
Just as I was about to say 'screw it' and fall blissfully back into an actually solid slumber, my intestines woke up.
They woke up brutally.
One intense intestinal cramp followed by me springing out of bed and hobbling like lightning to the washroom in order to avoid a reeeeeally bad morning definitely had me far too awake to fall back asleep.

My days are usually so uneventful!! Why do my nights have to be so busy?
At least I had some good dreams sprinkled in with my usual nightmares.

The question now is, do I try and sleep for a couple more hours, or accept defeat and force myself to get up and get moving?

Perception of Seriousness

I was having a lengthy discussion with someone today about the entire topic of chronic illness.
This is an umbrella term for thousands of illnesses that span across countries, ages, all walks of life, all organs, and can have an effect on absolutely any person at any given time. These illnesses have no known singular cause nor do they have a known cure.
Yet, we were trying to pinpoint why these illnesses are sometimes not exactly taken seriously.

I see memes and comments online every day-
"I spend 75% of my time pretending that I don't have a chronic illness, and then 25% of the time trying to prove that I DO have a chronic illness to people who don't believe me."
It's true. We want to do everything we still want to do, and our diseases are often invisible anyways, so we pretend to be healthy out in public to blend in. But then when it comes down to receiving treatment and being taken seriously, we have to somehow prove to others that we do, in fact, suffer from an invisible disease that can only be seen in bloodwork and scans and medical charts and physical assessments.

On one hand, I don't think many people, who are even remotely educated on the prevalence and various types of chronic illness, would ever dispute the fact that these illnesses can be terribly severe, can create an all-encompassing disruption of one's life, and can even be fatal.
On the other hand, there seems to be a disconnection.

For instance - someone breaks a bone and cannot participate in a sport. That person is often visited in the hospital or even the emergency department by friends. Friends may even come over to their house to help cook or clean or help them be mobile.
Now, we all know and comprehend that a sports injury like a broken wrist or a sprained ankle is not as serious as a chronic illness like rheumatoid arthritis or lupus, and yet it often seems as though sports injuries are treated as if they are a more severe injury.

I think the problem is that chronic illness is in the middle of every kind of scale on which we rate severity. Chronic illness often lacks that 'immediacy' that comes with freak accidents and sports injuries. Although the life disruption and changes to a routine ARE drastic, it is usually over the course of weeks, months, and even years, as opposed to a split-second injury or a quick contraction of an illness that requires immediate attention to cure. You cannot be sitting and waiting with that high-intensity adrenaline that comes with an immediate injury for weeks on end, so your body and your mind have to adapt (to this new injury in the organs, to this new severe pain that won't subside - the same level of pain as a broken arm but without the ability to fix it - to this new normal) and so you are better able to process - which can be viewed as less intense, and therefore, less severe.
Even when that is not the case.

Okay so what about the other side of the coin?
While it is true that chronic illness is not commonly known as terminal, these horrifying illness have SEVERAL moments where one random evening can become an emergency situation, and drastic interventions need to occur.

When you hear the word Cancer, a person automatically assumes it is a death sentence. That mindset has not faded. It often includes deadly medications and a time limit. Immediacy and terminal. It is the worst of the worst.

Chronic illness is not at that end of the spectrum either.
But there is one thing that I believe gets glossed over. Did you know that every single year I wind up in the emergency department, legitimately fearing for my life, and requiring intervention, multiple times? On nights when I am dealing especially with swelling in my throat, while it is not as fast as anaphylaxis, without intervention that swelling would progress until my airway closed. Or what about those dozens of episodes of Pancreatitis that had me hospitalized several times and disallowed to eat for several days? Pancreatitis can easily become a fatal situation, and requires emergency intervention. Then there was the emergency large bowel removal. I was losing so much blood that my large bowel was killing me. I was admitted immediately and surgery was planned and executed within days. Or the stomach bleed I had from certain medications. Or the 8-hour vomiting fits that resulted in severe dehydration, again requiring hospital intervention. This doesn't even include all of the severe and frightening massive allergic reactions to various medications.
These trips to the emergency department by chronic illness patients are not wasted trips. These are very common episodes which nearly always require immediate hospital intervention. These illnesses can create such severe complications that, without intervention, these patients die. Their illnesses force them to rely on medications, some of which cannot even be accessed at home.

A fairly large issue is that many of these illnesses are invisible. While they do cause disability and problems with mobility, it is not always final. It is a rollercoaster and ever changing. A person who gets into an accident and becomes disabled is that way (usually) permanently. Or more permanently than someone with Ankylosing Spondylitis, for example. On one day I could require the use of my walker, and yet on another day I could be walking normally wearing heels! While these days I use my cane about 70% of the time, you will also see me out without it as well. Some days are worse than others. With Crohn's it is the same thing -> one day I could be doubled-over in pain, incapable of leaving the bathroom floor, and two days later I could be out having dinner and maybe even a glass of wine out with friends.
These illnesses are wildly unpredictable, and without being able to see the amount of pain we are in or not in, it can be seen as false. A good friend used to describe it to me that, over the course of a day, it looked as though I was being slowly poisoned. I would often start off with a lot of energy, walking tall and without limping, and laughing. A lot. But then, as the minutes to hours went by, my posture would change, my face would become white or greenish, my eyes would turn dull, and I could not stand up straight or walk without a pronounced limp. I felt that this was a great way to describe it. Similar to the spoon theory - we can begin a day or an evening out with fervor, but the longer we stay and the more we do, the more our bodies fail us.

So, as we were discussing these predicaments, we were trying to find answers.

Is it because these 'episodes' and trips to the emergency department are so frequent, and are considered a 'normal' part of suffering from a chronic illness, that they do not seem to be taken seriously?

Is it because on one day a person could be on death's door, and yet two days later they may look as if they are in the best shape and health that they have ever been?

Adding to that, is it that people see us one day needing to use a handicap parking permit, but another day can walk half the length of a parking lot and are not using a handicap placard?

Is it the lack of immediacy?

Is it the fact that, with treatment, they are not considered terminal? So even if they require life-saving treatment, at least they can access that treatment?

Is it because the progression of these illnesses can span years and will last for an entire lifetime? Is it perhaps simpler to not necessarily ignore, but place the spotlight on these illnesses on the backburner?

Is it just too much to expect the same level of emergency thought several times a year for the same illness every single time? Does it become a nuisance?

Or is it mostly because of the tragic and uncontrollable variability in how each person suffers from the same disease?

I think that it is a combination of everything, but that last sentiment is definitely a larger obstacle. It is beyond difficult to convince people, who do not suffer from a chronic illness, that every person with the same disease will have an entirely different experience. How can that be? That is tough enough for the sufferers to wrap their heads around.

So with an illness that does not have that immediacy of an emergency at all times, an illness that lasts the entirety of a person's lifetime, an illness that is not terminal, an illness that looks different in each person who suffers from it, and an illness that is virtually invisible, how are we supposed to get the concept understood that these illnesses ARE serious, CAN kill, and are just as drastic and cause just as many monumental life changes as the next disease?

Anyways, just some thoughts to ponder.

Sub-Q Injection Woes

Today is treatment day.
Slowly and separately, I did both my Berinert and Methotrexate injections. I find that when I get all of my supplies out for Berinert, that is when I remember my MTX the most, so instead of putting it all away and then subsequently forgetting entirely to do my MTX that week, doing it on the same day seems to work best.

I mean, today was already basically a write-off, so doing both injections on an already sleep-away day is more effective.

Lately I have been focusing on eating better and exercising more, and along with less swelling, this means that I am slowly getting into better shape. THIS I am thrilled about. Spring has begun today and we have a wedding coming up in 6 months, so keeping myself in shape is a relatively high priority.
There is only one problem.
Sub-q injections are injected directly under the skin and into the fat layer between the skin and muscle. This means that there has to be a large enough layer of fat for these injections. Now if I was only doing one sub-q injection, it wouldn't be as big of a deal, but I do these injections three times a week with an extra one once a month. My thighs and upper arms are primarily muscle, so my abdomen is where I inject, and now that I am losing stomach fat (on purpose), these injections are becoming more painful. These injections have to be done in cycling spots each time, and I am supposed to avoid injecting near scars, bruising, and other injections.
Today was even an 'oops' moment. The second I inserted the needle, my abdominal muscle (on the right side) contracted/twitched, and the injection was far more painful than usual. It means that the fat layer in the area I chose today was not large enough.

Usually I feel like this is good news. It gives me an excuse to always have a little extra chunk around my tummy. I can be a little liberal with my eating - all because I have to have a workable fat layer available three times a week. Right now, however, reducing that amount of fat is a goodnews/badnews scenario.

No pain no gain though right??

Keep a Routine

I grew up knowing and believing that challenging oneself is the best way to promote growth. Challenge the physical, mental, and emotional boundaries of your existence and you will always feel productive.

Being without a job, facing limitations on food, on energy, on activity, and mildly with mobility, there is often a razor-thin line between challenging myself and pushing too far.
Before all of this extra illness, pushing too far usually meant a strained hamstring or sore muscles that prevented me from being able to climb a flight of stairs a couple of days later. Pushing too hard meant massive bruises from diving in volleyball, blisters on my palms from clutching a baseball bat, spraining an ankle, or cracking a rib... All injuries that would heal.
Now pushing too hard can mean a sudden unexpected trip to the emergency department, days of vomiting, days being stuck in bed. With so many chronic and autoimmune diseases, when I push myself, it needs to be in small doses and at a turtle's pace. Pushing too hard - going overboard - can even trigger a flare-up or essentially piss off my body so much that it winds up retaliating for months on end. Sometimes I won't recuperate for months, if at all.

So how do I push myself now? How do I keep a routine and keep strong?

Now I push myself by trying to have goals, but always listening to my body.
I have found that fresh air is something that I need every single day. So every single day I ensure that I spend at least a couple of minutes outside, even if it is just standing right outside the door waiting for Dex to finish his business.
I try and do a stretch or two once a day. On days when I have a little more energy, I do more.
Although I spend the overwhelming majority of the time at home and in the bedroom, I try and wear something different each day. I have several pieces of clothing that are specific for spending entire days at home and I usually cycle between those particular outfits, but I try not to wear the exact same pair of pajamas every day. If I spend too many afternoons in the same set of PJs, I immediately find that my mood is negatively affected.
Getting up, making the bed, and changing into an entirely different outfit helps uplift the atmosphere.

I want to push myself further. I want to try walking outside more. Weight-bearing exercises (simply bearing my own weight) are supposed to be the optimal activities for Ankylosing Spondylitis. So even though my instinct is to rest and lie down when I am in this much pain, I need to remind myself that I am supposed to walk and stretch as much as I can without flaring up my other illnesses.

So there is my first goal:
• Walk more. Stretch more. Keep getting fresh air.

I want to push myself further by actually getting dressed each day. Instead of cycling between some 8-odd outfits I wear to bed, I want to take a small step further by actually getting into an outfit for the day, regardless of the fact that I will be spending most of those days in bed anyways. I miss getting up each day, picking out an outfit, and following through on a beauty routine.

That's my second goal:
• Get myself in an outfit that is put together every day.

This next one is a goal I have already been working on lately with quite a bit of success. I want to make sure that I am writing something almost every day. Aside from days with mind-bending migraines, I expect myself to write a blog, or write in my journal, or work on learning or writing a new song, or a card, a letter, or quotes from the latest novel I am reading. Taking it even another step further would be to make sure that I have a reliable online presence.

Third goal:
• Write something each and every day.

Fourth goal:
• Maintain a persistent online presence.

Another goal I have been working has to do with cleaning my life up. Nothing drastic of course, but I am trying to minimize some of the chaos. I have purged my closet three times in the last four months. I continue to find clothing and material items that I no longer find joy with. I am working on letting go of items that I no longer need or use, updating certain parts of my style that are outdated, and slowly reducing the amount of stuff that sits there, unused, for no reason. Even today I finally decided to pack away several dresses that I have had since I was 11 years old. These items are 20 years old already! They are in great shape and they still fit me nearly perfectly, but I need to let go of some of these items. While I am working on this particular project, I may even try that hanger trick -> where once I have worn an article of clothing, I turn the hanger around. After a year's time, if a hanger hasn't been turned around, that article of clothing gets donated or chucked. This plan would also motivate me to follow through with my other goal of wearing an actual ensemble each day.

Fifth goal:
• Rid myself of excess stuff that I do not use.

I want to push myself physically and emotionally. I want to push my boundaries for walking distance, I want to make meditation a more regular activity, and I want to be out in nature more often. I want to take a drive out to the mountains even just to sit there for half an hour. I want to revel in the beauty of nature and appreciate my surroundings more. I want to see the stars and hear the birds and the rustling of trees in the middle of the week. I want to curl up in a sleeping bag in the back of a truck, listening to the sounds of the forest and enjoying a hot apple cider. I want to quiet my mind more often.

Goal six:
• Regular meditation and get back to nature.

Another major goal is that I want to get back to a routine of being more frugal - or putting my money towards more meaningful endeavors. Instead of buying that super cute dress I saw online, why not buy an extra board game instead? Instead of getting an appetizer before dinner, save that up for something functional for the house. Instead of giving in to my love for heels, remembering that I cannot even WEAR heels on a regular basis anymore and spend it, rather, on an evening out with RJ - going to a movie or maybe eventually going bowling or just to experience something together instead.

Goal seven:
• Make smarter decisions in regards to monetary expenses.

The next one is all about friendships. Taking the time to nourish friendships and to connect while being unplugged. Rely less on Facebook and Instagram and Twitter and Snapchat for the latest news and updates about friends, and rely more on direct conversation. Genuine conversation.

Goal eight:
• Unplugged connections and cultivating true friendships.

The next major goal that I would like to accomplish, something that will help to better myself and to keep things in perspective, is to help others more and to be less selfish. There are small changes that I can make each day to be less indulgent and self-serving, so why not try and make those changes?

Goal nine:
• Help others more often and worry about myself a little less. Try and treat people better every day in some small way.

Number ten - very straightforward and predictable for me - is to make sure that I am continuing to be involved in music and maintain some level of athleticism even though I am stuck at home most days. I can listen to music if I can't play. I can watch sports if I can't step out onto the court. I can stretch on my yoga mat while I watch a game of volleyball. I can do squats in the living room with headphones in listening to the newest request. Do what I love - every single day.

Goal ten:
Do what I love every day.

Essentially I want to get out of my own head more and focus on everything around me, while continuing to work on my own health, my own trajectory of progress, and take in more experiences. I want to expand my knowledge, learn new talents, improve myself in every aspect that I can think of.

Do you know what the best part is?? None of these goals are so futuristic that I can easily forget them. They can be achieved here and now - and none of them should affect my health in any negative way. None of these goals or decisions are dependent upon me feeling better, getting better, or gaining more energy. I don't need to rely on the latest breakthrough medication or that hopeful procedure that could improve my pain levels in order to accomplish any one of these goals.

Sleep

Sleep has always been a bit of an issue for me since I first became ill.

At first it was pain and bathroom breaks. I would be up several times throughout the night racing to the washroom and I would doubled over in pain for the most part.

Then the side effects of medications were added to the mixture. Prednisone was the catalyst for so many issues with sleeping. It started with basic insomnia, then the nightmares, night terrors, and the racing heartbeat started. Have you ever tried sleeping when your heart rate is above 100bpm? Pretty tough to relax, especially when there are so many other factors working against you.

Those night terrors went from pretty basic to all-encompassing fear. Suddenly I needed to do everything I could to stop myself from even having the slightest cat-nap. Those terrors were so vivid that I could not handle them - emotionally or psychologically.

Then the hallucinations started. Small at first, seeing a spider in a corner that wasn't actually there. Trying to pick up a towel that had fallen off of the bathroom counter, that wasn't there at all. My eyes playing tricks on me, seeing bats in my bedroom or other critters. But it got worse. I began having phone conversations that weren't actually happening. I saw a friend standing in my kitchen cooking while we had a conversation, only to blink and be standing in the middle of the basement suite all alone.
That escalated to daytime hallucinations. Speaking to a substitute teacher in the middle of my high school - who did not exist. Soon I had to ask for help from friends deciphering whether what I was seeing, hearing, and who I was speaking with was real or not. I had to verify with people on whether or not we had had specific conversations. I saw green windows in the middle of someone's front yard in the grass. I stopped for a pedestrian using a crosswalk, only to realize that the pedestrian was only in my mind. Not only was I terrified to sleep, now I couldn't drive either. I could not trust my own senses.

As if insomnia, night terrors, hallucinations, a racing heartbeat, bathroom breaks, and pain weren't enough...

The sicker I got, the more issues I developed. I started grinding my teeth when I DID happen to sleep. I would sleepwalk and find myself in the living room, or the kitchen, and several times on the bathroom floor. I would yell in my sleep. I would flail. I would start shouting in languages no one could pinpoint.
Then, of course, came the 'common' symptoms of having an Inflammatory Bowel Disease. Soon I needed mattress protectors and other embarrassing supplies.

If I don't take certain medications to help me sleep, I will sometimes suffer insomnia, often for weeks at a time. But when I take the medications to help me sleep, it feels like a medicated sleep and I never quite feel well-rested. And then there is the energy rollercoaster... where often for months on end I will suffer the complete opposite side of the spectrum and I will be sleeping nearly 20 hours each day and can never quite get myself to fully wake up.

Right now things are much calmer. I still need help getting to sleep sometimes, and still go through bouts of insomnia (like right now). I hallucinate much less, I haven't walked in my sleep for a couple of years, and my nightmares/night terrors occur every few weeks instead of every single time I close my eyes. I think a major part of this improvement comes from feeling safer. The extra supplies are needed every couple of months, unfortunately, my heart still races, the nausea & pain & bathroom breaks remain frequent, and I still grind my teeth if I am extra sick, but at least I am not so paralyzed with fear that I purposely prevent myself from sleeping.

When I am able to sleep soundly it is glorious.

I have a complicated love/hate relationship with sleep... and sometimes I need to force myself to stay awake for so long that my body finally just gives up and allows me to pass out without extra medication.

I think my body will finally let me sleep now... at 6:30am... after my Berinert treatment.

Happy Friday.

Fatigue Friday.

Best Life Decisions

We all make decision after decision after decision every single day. Most are menial, but others are monumental.

I want to celebrate some of the best decisions I have ever made.

Pursuing an undergraduate degree in Music and Psychology. I loved all of my courses. I loved my time in University and I loved everything I learned.

Moving to Calgary. Staying in Alberta instead of packing up and moving all the way to Ontario. Staying close to family.

Traveling. A lot. Traveling while I felt well enough to so. Traveling before I developed arthritis... before my HAE was discovered... before I couldn't work anymore.

Cherishing friendships that are deep and meaningful, and letting go of relationships and friendships that were not meant to be for forever.

Focusing on volleyball first. Ignoring all of the good-hearted people who wanted me to slow down... not knowing in only a few years I'd be forced to slow down. Playing as many hours a day as I could - while I could.

Adopting Decker. There are too many reasons to list all of them.

Relenting and going off of work. Don't get me wrong here AT ALL - I miss working. If I could trade all of this illness and work like a dog until I am 70 years old, I would. Being off of work has improved my stress levels by a significant amount. My health is a little less unstable, and I am not constantly in the emergency department. I hate that I cannot physically work, but I am beyond grateful that I had the option and did not immediately have to move back into my parents' basement when it happened.

Dating RJ. For very obvious reasons.

Getting surgery last January. That surgery has improved some pain and it has removed some stresses OUT of the equation entirely. Just fewer stresses. Something so small makes a big difference at home.

Taking chances even when they might seem impossible.

Getting back into writing.

Continuing to sing once in a while - mostly for funerals, weddings, fundraisers, and retirement homes. I get to sing all the time for people who just love music. It is rewarding in a way I never realized I needed.

Branching out and learning new skills while continuing to learn and improve current skills.

But the BEST decision, the big kahuna of all of em, the number one decision that paved the way for everything:

☆Deciding to FIGHT every single day, through every pain, every symptom, every side effect, and make a commitment to fight to live no matter what. Deciding that my life is precious and amazing and worth fighting for, no matter what kind of obstacles I will face.☆

Once that moment came and I made that decision - consciously and specifically - it is the sentiment I always come back to whenever I am struggling. I promised. I decidedly promised - to me, to my parents, to my future husband (who was only imaginary back then), and to God - that I would fight no matter what.

No matter what.

Receptacle Analysis

If you have ever wondered what the best receptacles are to puke in, you have come to the right place!!
😉🤢

We all get the flu, or food poisoning, or waaay too drunk - we have all had to vomit at some point.
But what are the best places to vomit?
Let's take a look.

1. The Toilet
This is the most common and this one is available in the homes and businesses that we tend to frequent.
There are several problems with this one. First of all, NO ONE wants to stick their head inside the porcelain bowl that is also the receptacle for another bodily function. Just the thought is pretty gross. Secondly, if this puking fit is particularly bad, you get residual splash. Talk about revolting. Not to mention that you often wind up sleeping on the cold bathroom floor just to be near it.
The reason this is such a common choice, though, is that the cleanup is easy, and you can get rid of the smell and visual with one simple flush between heaving episodes. So despite its crudeness, it is still a top and common choice. Just make sure to throw your hair in a ponytail in case it lingers into the bowl.
Gross.

2. Garbage Can
This is another common one. This most obvious problems with the garbage can involve the cleanup. If you are stuck in bed puking, chances are you won't want to get up and clean the garbage can in between puking sessions, but avoiding it can cause the smell and visual to actually make you heave even more. The benefit is that it is portable and you can simply place it directly beside the bed or floor wherever you plant yourself for the rest of the day. This option is best for episodes of dry-heaving and less for the all encompassing vomiting fit that can stink up a room suuuuper quickly.

3. The Hospital Cardboard
If you have ever been to the hospital and/or emergency department, chances are you have seen these. They are little cardboard rectangular receptacles specific for those individuals who are puking in the waiting room. I don't like them because they seem flimsy and they never seem quite big enough. Then where do you put the used one? Sometimes it can even soak through (because it's just cardboard), and that is all kinds of unpleasantness. The benefits are that they are simple, cheap, and recyclable. Because when you can't stop puking, the environment is likely the last thing on your mind.

4. The Good Ol' 4L Ice Cream Pail
For those of you old enough to remember keeping those 4L ice cream pails on hand at all times, this is a childhood favourite choice. Again, recyclable, disposable, portable, cheap, and easy to clean, without the risk of soak-through. The problems are the cleaning and the smell, although in a pinch you could just lightly cover it with the lid. Plus, you can convince your parents to buy you a ton of ice cream just to make sure you have these containers on-hand.

5. Plastic Kidney-Shaped Bowls
Again, in hospitals, sometimes you will come across the plastic versions of the cardboard receptacles. They are often blue and kidney-shaped. Frankly I find them awkward, and still a bit small. They can only handle two or three heaves at most (unless it's only dry-heaving), and then you need a new one. The benefit is that if you are somewhere like a hospital, they do the dumping and cleaning for you. So no lingering smell or visual. They are better than the flimsy cardboard cups, but still just mediocre.

6. Ambulance Plastic Bag
These are actually pretty good. They are usually pretty large, they have a funnel shape at the top so you don't have to aim as directly, and you can pinch it closed or keep it open, to your liking. Plus, it is disposable, and they usually have a bunch in the ambulance. Much easier to handle, holds everything in, and you can carry it around with you. I actually have one of these with my medications for emergencies.

7. XL Coffee Cup
This discovery was made out of sheer desperation. I was having a severe intestinal swelling episode while traveling. I did not have a bucket or garbage can or puke bag. There were not enough gas stations along the way to run in every time, and the one gas station we stopped at had no bucket to sell or just give me. So I grabbed the first thing I saw that *could* work - I grabbed several extra large coffee cups. This actually turned out really well. Again, it is disposable, portable, recyclable if I felt like it, built to hold liquids, and inconspicuous. Plus they came with lids to mask the stench. It was a surprisingly good solution at the time, and I would recommend it for anyone who happens to get car sick.

8. Doggie Bags
This option is my favourite for random episodes that are unpredictable and come out of nowhere. They are built for volume, they are completely inconspicuous and can be hidden in any wallet, purse, or pocket, disposable, some are even compostable, easily tied shut, and they come in lovely lavender-scented options. These are great for random episodes of car sickness or riding in that cab at the end of a night of drinking when you think you're fine and then they start driving and you panic. Instead of going through that awful panic-mode trying to figure out if the cabbie can stop in time or if you should just roll down the window and try to puke out onto the street, if you already have doggie bags in your pocket, simply fish one out and use that. Trust me. It can be an upholstery-saver. I ALWAYS keep these in my purse somewhere. They are also extremely useful for carnival rides. Just hold one in your hand just in case. I mean, do you really want to be the person who puked on everybody or who caused a ride to shut down to be cleaned?
Doggie bags.
Lavender-Scented Doggie Bags!!

That is my experience-driven analysis of the most common vomit receptacles.
What else were you going to read on the internet today?

I hope this was helpful.
I also hope that there aren't TOO many people who are vomiting so much that they need this information...

Explaining Ourselves

One of the most impactful health quotes I have seen within the last few years is this:

"The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are."

This is perfectly accurate.

There is so much doubt, there is so much questioning, and there is so much judgement around illness in general, and especially around illness that is not visible.

***
How sick can you be, you don't look sick at all?
Do you really need that cane?
There is no way you have that disease, you seem fine!
That illness is really rare, it is probably a misdiagnosis!
He definitely doesn't have that - I have never seen him have ANY of the symptoms!
She was just out with friends last week, she can't be that sick!
If she's on chemotherapy why does she still have her hair?
If she had really that disease she would be in so much more pain!
I thought people with Crohn's couldn't eat that, do you not have it anymore?
Well I know what your doctor said, but did the bloodwork show anything?
How can they diagnose something if they haven't done any scans for it yet?
Are you sure that's what your doctor said?
Why would you ever go to a movie theater if you suffer migraines all the time?
I saw you using a walker a few months ago, why aren't you using it today? Are you better?
I have the same disease as he does and it definitely does NOT hurt as bad as he is saying it does. What a liar!
My friend's mom has that disease and she said that there's no way a person with that disease would be able to do what he is doing!
My disease went into remission by adopting a plant-based diet. If you try that diet you'll be fine. You're just not trying hard enough!
Well she obviously isn't taking care of herself if she is still so sick!
Why can't he just snap out if it?
She has been bitchy for months... like, get over it already it's not like there's anything physically wrong with her!
Why are you on THAT medication? Isn't that medication supposed to be for something else?
Omg I saw him yesterday playing golf. Pretty sure he's fine. There's no way he would be bedridden one day and golfing the next, that's impossible!
***

These are very baseline examples of the myriad of comments that are exchanged on a daily basis. The constant questioning and judgement. Of course there are hundreds of thousands of people who are supportive, but the condescending people are always just so much more vocal aren't they?

This got me wondering - why do we even feel the need to entertain all of these questions? Obviously there are situations where others need to better understand our predicaments - employers, teachers/professors, sometimes clients, medical insurance providers, pharmacists, colleagues, partners, children, parents, close friends, and of course our doctors and specialists.
But the woman coming out of the grocery store glaring at your handicap sticker then proceeding to shake her head - it is none of her business. The man in the elevator in the wheelchair who asks you why you aren't taking the stairs because you are so obviously young and healthy - none of his business either.

I think that we often want others to understand us and our situations so desperately that we crave the acceptance of every individual we come into contact with. When we feel that pang of doubt, we automatically assume that if that one person doubts the validity of our diagnosis, that it will somehow get back to people who can have an effect on our daily lives. It is true that in the medical world if one doctor expresses a lack of concern or vocalizes their doubt, that can become a black mark on your chart that will follow you around for years... but some random person who looks down his/her nose at you because they don't believe you? Yeah, in the grand scheme of things, they do not matter.

I am particularly guilty of wanting to be accepted, understood, and believed, right away. It stings even feeling that someone MIGHT perceive me as deceitful. As many of us have, I have had rumours spread about me faking an illness or faking the severity of an illness. I have been scorned and sneered at. I am also, sad to admit, guilty of some of the above judgements. I also need to remember that my opinion does not matter and that it is none of my business. There are certain 'rules' that I expect people to follow - like parking in a handicapped parking stall only if the vehicle has a placard. Otherwise - it is not up to me to decide who is ill enough to qualify, so why should it matter? I am much less likely to give the benefit of the doubt to someone who is unnecessarily rude to others or utterly inconsiderate, but even if someone on the train does not stand up to give up his/her seat to someone who is elderly, using a walking aide, or very clearly pregnant or struggling, I hope that there is a valid reason and I try to curb my own judgement.

In my opinion, the random people who 'deserve' an explanation are those who ask out if sheer curiosity and compassion. I enjoy explaining my illnesses to people when they ask politely. I am grateful that there are people who wonder in general, without any predisposed prejudices.
The rest do not need to know and are in no position to be so snarky about it. They are not worth the time and effort it takes to worry about whether or not they believe you. I mean, even in the hospitals, when they see a certain diagnosis on my chart I usually have to explain that it has been verified by SEVERAL different specialists across the country. I always write down the names of the specialists who made the diagnosis ahead of time just to skip over that 'there-is-no-way-you-have-that-disease'-stare. Wash your hands of the nonsense and focus on what you are doing - because we are all doing the best that we can in the circumstances in which we find ourselves. We are all struggling. We are all in pain of some kind. We all deserve compassion and understanding.

So why do we worry so much?

Needles Needles Needles

This week is a big needle week.
Yesterday I managed to get two sets of Standing-Order bloodwork done. This is to monitor my liver and other functions in my body to see what kind of effect medications and disease are having on me. It is to make sure that we are on the right track and that treatment is not doing more harm than good.

I also had my monthly biologic injection this week for my Ankylosing Spondylitis, then my blood-product injection for my Hereditary Angioedema, then my Methotrexate injection for my Crohn's Disease.
It seems like a lot.
It IS a lot.
These are all big medications.
They are also all required for my treatment. Today I will spend the day in bed... at home... cuddling with Decker all day and catching up on tv shows... maybe watching a couple movies if I don't sleep the rest of the day.
These weeks can be tough - but they are worth it. For someone who hates needles, I sure get them a lot.

BUT - I am happy with this current treatment regimen, I am still smiling, and I am privileged to be able to have access to these medications.

Keep on smiling! Stay strong!

Biologics Rage

Biologics tend to cause a lot of issues in the body. They are huge medications - heavy-hitters - so they take their toll. This includes the emotions. I always thought it was just me, but apparently Biologics Rage is real!!!

It was SO bad when I was on Remicade that I needed to be fully medicated in order to sleep through the four-hour infusion. It was likely the combination if Remicade and the 50mg Prednisone I would be required to take (which can also cause rage). I remember the slightest things setting me off into this fit of absolute chaos in my brain. I would say 99% of the time I would not act on this chaos or say anything, but my head would be filled with nonstop curse words and I would be screaming inside my mind. If someone else in the clinic turned their book page too loudly I would want to scream. If the tv kept getting off-kilter with the visual and auditory cues, I would want to scream. If the nurse checked my blood pressure two minutes earlier than the scheduled time, I would want to scream.
It was awful. I was a basket case angerball. My only saving grace was that I had already experienced a lot of time on Prednisone, so I found ways of swallowing it back and biting my tongue so that I didn't say anything I would regret.

Enbrel and Humira also caused some Biologics Rage, but being a quick sub-q injection, and without being on Prednisone, it was a lot milder.

This new Cosentyx is no different. Surprisingly, I had completely forgotten about this reaction when I started this new Biologic, and when I was doing the 5 week long build-up phase, I noticed that on Tuesdays I tended to be irritated. That, for whatever reason, on Tuesday, for 5 weeks in a row, I was just frustrated and irritated and annoyed by the smallest things, and I had no idea why. There was one day when I even retreated to the bedroom all day because I was so utterly annoyed, but I KNEW that it wasn't 'real' in a sense. I had no justifiable reason to be so upset, so I hid in my bedroom.

Once the third Tuesday hit, the coincidence also hit me. I had done my Cosentyx injection each Monday. I was experiencing a milder version of this Biologics Rage, with a delayed response.

Last night I took my Cosentyx injection... so I am preparing today in case every little tiny thing starts to set me off. So far I just feel a little more irritable... though not severe. At least not yet.

I swear - Biologics Rage is a thing!

So if you are on a Biologic and you have been feeling more irritable, for no apparent reason, perhaps you are also experiencing Biologics Rage. The best thing to do is watch a movie you love, listen to music you love, and when you feel you're about to lose it on something or someone else, take a deep breath, swallow it back, and if you are still overly angry about it the following day, address it then.
And always remember that you are not alone!

Doxycycline

Full disclosure - Doxycycline is kicking my ass this round.
I don't know why it is affecting me this badly this time around... but I usually get the first week and a half of the two week cycle to go pretty smoothly. The last few days of the cycle usually winds up giving me bad nausea and pain, but this time it started within the first few days.
Each morning and each night has had me doubled over, spitting, salivating, dry heaving, and rocking back and forth until the medication is through the worst part of it.
Not only that, but I wound up with a brand new abscess anyways.
Maybe Doxy needs a break from my antibiotic schedule.

Blessings Disguised

Haven't we all had moments in our lives that we thought were completely unfair, only to realize later in life that those experiences were blessings in disguise?

To be diagnosed with a severe form of Ulcerative Colitis at age 14 - grade 9 - that is tough. Not knowing whether or not I could finish high school on time or ever go through post-secondary education was terrifying. Having a major organ removed by open abdominal surgery, just before senior year, and to live with an ileostomy at school - yeah that was pretty harsh.
BUT - being diagnosed while still in the Children's Medical System and to be cared for at the Alberta Children's Hospital is that blessing. Being diagnosed at that age meant that the diagnosis came swiftly and I received the best possible care.

Having some issues dating and having to wait to find my 'person' until my late twenties was never something I hoped for. It felt like I waited a long time and had to do a lot of dating to try and find him.
BUT - it means that I was able to live alone and be independent for many years. It means that I got life experience on my own and really found out who I am. It helped me appreciate what it means to be in a good relationship rather than in a toxic one where both people involved are bad for each other. It allowed me to learn more about myself, about the world, and to enjoy depending on someone rather than feel like it is a necessity.

Being diagnosed with several other diseases during my University years was hard. It felt like it just kept piling up year after year with new illnesses that I had never previously heard of.
BUT - being diagnosed before going into the world and trying to pin down a career path wound up being a good thing. It showed me the importance of finding employment that had medical coverage and medical programs, just in case. That 'just in case' came true, and made me appreciate what that coverage and those programs meant for me.

Being sick enough to deter me from living abroad for a short time was a blow. I was hoping to do much more travel and I would have loved to live in France or Italy or even on the east side of Canada for that matter... my health prevented me from moving farther away.
BUT - I found out later that the best programs for disabilities happened to be in Alberta. Not only that, but I also continue to deteriorate, and there have been several instances in the past few years when I have required significant help from my family. If I had moved elsewhere, I would have more than likely had to move back this way anyways. I may have even had to move back in with my parents. But since I stayed here, even if it seemed like a disappointing scenario, I was able to maintain my independence while also being near enough to my family to call on them for help.

The friends I have made, the people I have met, my significant other, my close proximity to family, my close proximity to some of the leading specialists in their field, the mountains and lakes and landscape of this area, the medical coverage, the beneficial programs, and all of the opportunities I have had, have all resulted (in some shape or form) from the negative stress and negative situations I have endured.

One of my favourite quotes (from World War Z) is that:

"Sometimes the thing you thought was the most brutal aspect of the virus, turns out to be the chink in its armor. And [Mother Nature] loves disguising her weaknesses as strengths."

Sometimes the strongest parts of what we are dealing with seem brutal and unfair at the time, but they can turn out to be exactly what needed to occur in order to receive the best care.
These blessings in disguise are still painful, they can still feel unfair, they can still seem unprecedented and without any reason at all, but eventually it all makes sense. At least I continue to hope so.