2 Month Update

It has been just over two months since my latest procedure. I have included some before-and-after photos of my abdomen and my scars. 

Overall I have been feeling back to my normal. I experience some pain if I eat a fatty meal or if I eat too quickly, some of my IBD symptoms have been exacerbated by the excess bile being dumped into my intestines from the liver, and I am enjoying a littttttttle less nausea these days. 

On Wednesday I had my two month follow-up appointment with my surgeon as well! 

Another case of: it's always good to be early. 

The appointment was downtown, so I was slightly nervous about timing and parking. I left super early, just in case. I knew that there was a coffee shop nearby if I needed to take extra time and I also brought a book with me. 

I got there about 50 minutes before my appointment, checked in, and mentioned that I knew I was exceptionally early but that I had brought a book. Turns out - I was his second appointment of the day and his first patient never showed up. So the nurse brought me back into the consult room and I saw my surgeon while filling out paperwork. 

I love when this happens! 

So I was in and out of there about half an hour before my appointment was supposed to start! 

The appointment itself went well. He assessed my symptoms, checked my scars, pulsed on my abdomen to check for hernias, bubbling, or any signs of complications - there were none. My bloodwork looked good (sooooo relieved that my liver enzymes had normalized) and the pathology of my gallbladder & stones came back clear (no signs of cancer). 

He did prescribe a medication to help with the excess bile, but said that I shouldn't have to see him again - everything looked pretty perfect. 

I love good appointments! 

And as a plus - parking was easy, driving was easy, traffic was flowing, and then I rewarded myself with a new swimsuit on my way home. 

Right after surgery: 

A few days home: 

2 weeks after: 

One month: 

Two months: 

After two months, the small laparoscopic incisions look similar to my freckles on my abdomen... within a few more months they will essentially be invisible unless looking up close. 

😊

My 'Tells'

I think everyone has their own unique 'tell' or set of 'tells' that signify when that person is really struggling. 

Maybe you become very quiet or less focused and pull back from conversation. Maybe you adopt the 'pain posture', which can be very common. (Essentially, the pain posture refers to a slouched over position while sitting, standing, or walking, in a subconscious attempt to protect ones own internal organs). 

There are a lot of different ways that can show how someone is struggling without it being especially obvious. People do not always have to be wincing or crying, yelling or moaning, they may even look entirely normal. 

Here are some 'tells' that can be a good indication of a person in pain:

1. Fidgeting and posture shifting. 

People who are in pain try to distract their own minds from the pain by doing, well, anything else. We tend to fidget, change our posture or position, stretch, move around, pace, or just continuously move. Many people in pain may shake, bounce their legs, rock, or move their feet. One of my personal tells when I fidget is I tend to flex and release my toes - something that can be hidden a little more easily. 

2. Changes in Gait

People in pain may show changes in how they walk. Their bodies are trying to either correct or compensate for the pain that they feel. You may see someone hunched over, a slight limp, a slower pace, shuffling, dragging feet, or any other of the various ways our gait can show pain. My personal tell, which I did not even realize I was doing until years later when my husband pointed it out, is that I start to walk pigeon-toed... and I don't mean a little bit pigeon-toed. There were times (so I have been told) where I was essentially walking on the outer edge of my foot, with my toes pointing 90° inward. This sounded insane to me. Though when I had him point it out when I was doing it, there I was, my feet both pointing inward. This particular 'tell', I'm guessing, is my body's way of trying to open up my hips. The pain in my SI joint becomes so hindering that my body tries to open my hips by pushing my feet inward and stretching my thighs out to the side. That's my take on it, anyways. The best part about this tell is that I don't notice that I am doing it. It is not on purpose. This allows for my husband to gauge whether or not I am telling the truth when I say that "I feel fine". 

3. Eye Colour

This 'tell' actually refers to any colour in the face. Most of us tend to become more pale the worse that we feel, but, luckily, makeup can hide this lack of colour. Eye colour, however, is more difficult to hide. When I am particularly sick, my eyes become more translucent or can even appear grey. The blue can be lost almost entirely on my worst days. I may have colour in my cheeks and a 'glow' on my face, but if my eyes are grey, chances are that I am feeling pretty rotten, but wearing amazing makeup. 

4. Attention & Attitude

We all have bad days. We all have days when we feel 'out-of-it' or can't quite concentrate. Losing focus and forgetting basic vocabulary is not necessarily connected primarily to pain, but it can be a way to read someone if you think pain is an issue. When I am in a ton of pain, not only do I speak less, but my speech can change in very obvious ways. I will forget the conversation (if I even participate), I will lose focus and forget words or the meanings of simple words. Most importantly, though, I will lose my humour and sarcastic edge the more pain I am in. Not entirely, of course. I still make jokes even in my most vulnerable situations, but when I start to get 'snarky' or make sarcastic remarks to my loved ones, that is a sure sign that I am feeling just a little bit better. Personality. Personality is what can get lost when all we can think about is pain. Personality changes are one of the most highly reported changes that someone will notice when a loved one is suffering. It's not on purpose. It's not necessarily even controllable. It's simply what happens when someone is dealing with huge amounts of stress - especially pain and illness. It can be something to watch for - to notice. Although it is never okay to treat others poorly just because a person is suffering, those negative emotions are more than reasonable, they are expected. That's when communication becomes key in managing those brutal times. 

5. Sleep Habits

This one can seem really clear, but it can be a lot more complicated than a straightforward lack of sleep. 

Illness and pain can wreak havoc on sleeping patterns. Sleeping too much, too little, suffering from insomnia or nightmares, lucid dreaming, sleepwalking, changes in sleep habits or sleep times... Even something as simple as sleeping more deeply than usual, or waking up disoriented, these can all be signs that our bodies are fighting something more than our day-to-day normalcies. 

My biggest 'tell' of when a big crash is coming is that I will start grinding my teeth when I sleep. I will wake up with a sore jaw and a headache, I will have bouts of insomnia and of sleeping far too deeply without dreams. That, or I will have a string of terrifying lucid dreams, episodes of sleep paralysis, and I'll just randomly fall asleep at odd times through the day for a minute or two (micro naps). I will also often wake up disoriented - having forgotten where I am or what day it is, who is home, etc... 

These are some examples of ways to tell when friends are suffering. 

The biggest problem with most of these is that they can be very well hidden, especially if you live alone. I know that, for me, I can look the picture of health and be having a crash day. It is not always as obvious as shaking limbs and tears, or constant moaning and complaining. Crashes and high levels of pain can be hidden by adrenaline, makeup, smiling, and consciously combatting our own unique tells. I often have to actively stop myself from fidgeting in public so as not to give away any sign of discomfort. 

It is fascinating what our bodies can handle, and what it can hide. 

What are your biggest 'tells'? Have your friends or family ever told you about any of your own that you were previously unaware of? 

I'd love to know some of the intriguing ways we hide or mask our pain! 

The above photo ⬆️ was taken at the ER for a severe throat swell.... mere hours before the photo below ⬇️

By the time this photo was taken ⬆️ I was walking so pigeon-toed, that I was debating using my wheelchair to get back to the vehicle. But it was so muddy by this bridge that I would have gotten stuck. 

I was taking a photo of my makeup ⬆️ but this is the beginning of a severe crash. 

I barely made it through this yoga session ⬆️. I was so nauseated that I was hunched over the entire day - I could not stand up straight. This was one of the most difficult - and, therefore, most important - yoga sessions. 

It's the little 'tells' that quietly, and subtly, let others into how we are truly feeling internally. 

The Lighter Side of: Being Too Tired

Okay, sure, the vast majority of the time, being so tired that you are ready to fall asleep at any moment of the day can be pretty inconvenient.
Then, when it is combined with nightly bouts of insomnia, it can be infuriating.
You spend alllllllll day fighting to stay awake so that you can *hopefully* have a decent night's sleep, but when it is finally bedtime, you spend the evening staring at the ceiling.

So what should you do?
Do you give in to a lovely little cat-nap in the afternoon and risk an even more frustrating night of insomnia? Do you keep pumping yourself with sugar or caffeine to stay awake during the day? Do you try and do something active to keep your focus?

The Lighter Side of being too tired to do anything is that every single spot in the house becomes undeniably comfortable. You can curl up in a chair, on the couch, on the bed, on the floor, even in the washroom. It doesn't matter how uncomfortable a spot may seem, when you are that tired, everywhere is a comfy spot to sleep. You lose your picky ways and, if you allow it, you can let slumber lull you into its arms for a wonderfully deep, unplanned, nap.
Naps can be glorious.

The Lighter Side of: Wheelchairs in Elevators

Wheelchairs are intended to provide better accessibility for people who are paralyzed, ill, or who have mobility issues. It is meant to be a door-opener for people who, historically, were so often confined to their bedrooms.
Let's face it, though, wheelchairs can be annoying and can further illuminate the struggles these people deal with. While using a wheelchair, it becomes quite evident how inaccessible the bulk of our society can be.

There are some major perks and advantages, though, that we can focus on. I am particularly lucky because I only need a wheelchair part-time.

Elevators are one of them.
Sure, it is frustrating if elevators are broken down, running slowly, or way too busy. It's not like wheelchair users can quickly run into the stairwell. We rely on those elevators.

The Lighter Side of wheelchairs in elevators is that even if the elevator is jam packed like a can of sardines, the wheelchair forces others to give us that bubble of space. It's not as though we can shrink the wheelchair to fit more people in, and unless someone is bold enough (or stupid enough) to sit on the lap of a disabled stranger, wheelchairs provide a great little privacy bubble in overly packed elevators.

The Lighter Side of: Nasty Side Effects

Adverse effects can be brutal - they can sometimes be worse than the symptoms of the disease.
When you have been on heavy-hitting medications like Prednisone, Methotrexate, Anti-TNF drugs, any anti-depressant or anti-psychotics, not to mention pain medications like gabapentin, you become accustomed to taking the good with the bad.

I have had the fortune of being on medications that had no noticeable adverse effects (like Ondansetron or Ursodiol), but I have also had the misfortune of being on medications with side effects that have lasted long after being removed off the medication itself (like Prednisone, Prochlorazine, Pentasa, and Salofalk). I mean years and years, not just a few days or weeks.
When the adverse effects are the run-of-the-mill lists - such as stomach pain, cramping, diarrhea, change in appetite, headache - we usually dismiss those side effects. Why? We dismiss them because these are on nearly every single medication leaflet you will ever see.
Here is the issue with dismissing it - these side effects can be life-altering. 'Changes in appetite' doesn't sound like a huge deal, especially when we see this risk so often and when you are looking at the side effects of Prednisone, appetite change doesn't seem that bad. However, 3 months into a medication and 50lbs heavier is not a minor side effect. It might be an expected effect, a common effect, and it is mostly just water weight that will fall off after the fact, but nothing about it is minor.

When you get into the more severe side effects, like hallucinations, hormonal changes, mood swings and depression, suicidal thoughts, tremors, vision changes, seizures, hair loss, blood clots, leukemia, stomach bleeds, vomiting, psychosis, navigating this dangerous side of medications can be tricky and frightening. Don't be fooled either, it may appear like these side effects are a risk only with pharmaceutical drugs, but adverse effects - even severe ones - can occur from anything that touches your system.

The Lighter Side of Adverse Effects is that, sometimes, the side effects can actually be positive, AND not all of the listed side effects on medication leaflets are actually scientifically proven side effects.
Many of the adverse effects listed on the leaflets that we receive are 'patient reported' effects - and companies are required to publish every formal complaint. For instance, 'gunshot wound' and 'motor vehicle accident' are listed as potential side effects of the Gardasil vaccine. Every medication will include all reported effects - whether it is valid or not. With words like 'incidence unknown', you can be fairly certain it is a patient reported effect. This doesn't mean they are all to be dismissed though, but when you read a leaflet that has every possible symptom ever recorded listed as a side effect, or when you read about side effects like the two examples listed, common sense should steer you to the correct information.
And if you DO want specifics of a particular side effect - ask a pharmacist! The incidence of any particular effect will be listed (0.1% of patients, 2% of patients, etc...), and it is their career to understand medications, their side effects, and contraindications.
The other lighter side of side effects is that these effects can sometimes be beneficial!
I have been on medications that have thickened my hair - and for that time, my hair was thick and luscious and had great volume. I was on another medication that cleared all of my skin issues and gave me that coveted 'glow' without any effort. I was able to comfortably and confidently go without any makeup at all for months! That was a nice perk, however short-lived (that medication also nearly drove me into the ground from constant vomiting, tremors, and severe weakness). I have been on a medication that have increased my energy as a side effect, another that reduced my migraines, and yet another that reduced my tachycardic heart rate to a more manageable level. These were all side effects; unintended results of taking one medication or another.

Side effects are a part of life. Anything and everything we ingest, digest, rub on our skin, drop in our eyes, diffuse in our homes, put in our water, has unintended effects, even we do not always notice them. The trick is to weed out the overwhelming amount of information produced in leaflets to what is clinically significant, while being aware of the additional possibilities, and then listen to your own body and focus your attention on what is changing. Then, as an added bonus, take stock of the side effects that have been positive or beneficial. These will ultimately be called 'Off-Label Indications' or 'Off-Label Uses' and can prove to be helpful to a variety of other patients - so notice them and report them if they are significant!

Side effects are not all bad.
Side effects are not all clinical.

The Lighter Side of: Uncomfortable Situations

Experiencing pain and suffering - either first-hand or through a family member or friend - is always a really tough situation.
Watching a grandparent struggle with mobility and require a wheelchair, watching a friend suffer with inflammation or autoimmune disorders, or watching a parent begin to lose their precious memories, these are all situations we would rather not find ourselves.
They are difficult.
They are disheartening.
They are uncomfortable.

They are also wonderful opportunities to teach young ones about what happens when our bodies fail us, for whatever reason.

People are almost always too uncomfortable to really discuss the realities of our failing bodies. Talking about what happens to people that result in them needing walking aids or special equipment is not something that is done on a regular basis - we like to be blissfully unaware, on purpose, because we do not like to entertain the possibility of it happening to us. We like to keep these difficult concepts at arms-length, away from our own realities, until we absolutely need to face them.

But what happens when we do have these discussions earlier on?

The Lighter Side of uncomfortable situations is how much we can learn from facing them or simply discussing these situations. Maybe if we talked about what it means to use a wheelchair, a walker, or a cane, younger people would be less confused about what kind of people might require them. Maybe if we talk about accessibility with our young ones, they may grow up to make changes that help the world be more accessible to people who do have mobility issues.
Maybe if we discuss all of the different aspects of what special tools and strategies people need to overcome their own limitations, we could have a more inclusive world. Places that are better equipped for those who may have memory issues, attention issues, who suffer from seizures that can worsen with flashing lights, special tools in movie theaters for the blind or the deaf, a way for everyone to experience our wonderful world.
When we are forced to handle uncomfortable conversations head-on, we begin to think about these things - things that we grow up trying to avoid. That is how groups of people or even entire generations of people become forgotten. If we never talk about these types of problems, how are we ever going to understand what they mean?
Maybe it's time to begin having these conversations... like any normal conversation.

The Lighter Side of: Progressive Diseases

I would say that most of the time, I am working hard to maintain what I am currently feeling. Not because how I currently feel is all rainbows and sunshine every day, but because I know that things can get worse... a lot worse. They *have* been a lot worse. They will worsen. That is not to be pessimistic, it is to understand illness.
Chronic illness is likened to a rollercoaster ride for a reason. For many people this is a very volatile experience - good days, bad days, without much consistency and with each day being almost entirely unexpected. Although it does not define who we are, it can unfortunately 'run the show' at times, especially during severe flares.
One of the many reasons I try to stay active, even though some activities cause severe pain, is because I want my body to be as strong and as tough as possible. That way, when things do become worse, whether temporarily or not, I will have that core strength there to help me recover.
It can appear to be a paradox - to be healthy in muscle and strength but so weak in internal organs. To have some semblance of physicality while simultaneously struggling to walk.

I want to maintain what strength and flexibility I DO still possess, while hoping and working towards improvement, all the while knowing and understanding that I have progressive illnesses.... Illnesses that have a general downward trajectory, even though it might not be linear.

The Lighter Side of progressive illnesses is that I have a generally clear idea of where I may wind up with my illnesses.
I can *sort of* see what is coming up ahead -> in the overall scheme of things anyways. 
It isn't pretty, but I try not to dwell on the future of these diseases too much, because it can be a difficult and highly distressing image to come to terms with.

There are some hard truths when it comes to disease:
• I have no large colon and I have an internal J-Pouch. There are high statistics showing failure in these if surgically created early in life, so it is highly likely that I will eventually require a permanent ostomy.
• I have Macular Degeneration - and an early onset that many ophthalmologists have never seen. There is no predicting how quickly this disease will progress or in which ways. The reality is that I will likely go blind... probably over the next 10-20 years. Let's hope it is the latter or even further down the road.
• Due to so many allergies, intolerances, and lack of available medications, my Ankylosing Spondylitis will progress. I am already using a wheelchair at times, and this will become much much worse unless a cure is found.
• I have Hereditary Angioedema, and although it is not necessarily progressive, it does have a direct link to stress (stress of any kind can trigger an episode but stress itself does not cause the illness).

There are a lot of 'what if's and 'what may happen's here, but the general understanding is that many of the illnesses I suffer from will continue to become worse over time: Psoriasis, Migraines, Raynaud's, additional development of autoimmune and inflammatory conditions, Tachycardia, Hashimoto's Thyroiditis, hell even the AVM in my lung could eventually cause an issue.

So my future may be blindness, barely mobile, with a permanent ostomy and maybe even the removal of my thyroid. Plus trying to medicate my other illnesses with blood infusions and any other medication, natural or pharmaceutical.
That may be my future.

Knowing this, however, is a curse and a blessing. It is a blessing because I also have had time to prepare as much as possible. Prepare mentally, but also prepare physically. Let me tell you, these illnesses may be progressive, but they sure as hell won't progress without a fight. I am gonna go down swingin' every step of the way. I will modify what I do and how I experience the world so that I remain happy and healthy in my mind and in the parts of my body that can still be strengthened.
That is all I can do.
It is all I can hope for.
And maybe if I keep fighting, maybe all of this inflammation and autoimmunity will just give up the fight and leave me be.
Plus - what is the point of feeling that negativity day in and day out? We already feel pain and illness every day, why dwell on an uncertain future when it might get worse - or better? Why wake up each day simply to torture myself with the statistics and the progression?

Knowing that my body will worsen much earlier in life and at a much faster pace than the average person has been both a struggle and a positive factor in my life.
So why not attempt to focus, at least the majority of the time, on the positive aspects, and build upon that view?

Do you know what none of those statistics really ever tell you?
Stats don't usually show whether or not a person was happy. Stats do not show an individual's life other than what their medical records show. Stats do not tell you if those people experienced love, excitement, adventure, all of those other experiences that go far beyond physical pain. I focus on maintaining what I can, strengthening where I can, and looking towards the aspects of my future that are positive - while preparing, as I best know how & for what I have been told, for what could be negative.

The Lighter Side of: Adrenaline

Adrenaline, overall, is a wonderful physiological event. It kicks in when we need it the most and helps us make split-second decisions in highly stressful scenarios.
Adrenaline can also ramp up our emotions and, for someone who has diseases that can be negatively affected by a surge in adrenaline after it is over, cause flare-ups.
My Hereditary Angioedema is clearly and significantly affected by surges in adrenaline. It makes it complicated to do anything active or thrilling - like rollercoaster rides or skydiving. After the event is over and done with, here comes a throat swell! My Crohn's likes to kick in extra inflammation, my muscles seize, my Ankylosing Spondylitis screams at me - all because of the crash after a burst of adrenaline.

The Lighter Side of adrenaline, though, is that it can get you through just about anything.
When you see people - chronically ill people - out and having fun, looking as though they do not have a care in the world, as though they are in no pain.... that is adrenaline. That wonderful built-in opiate that allows us to escape our daily torture for a few moments, maybe even a few hours, once in a blue moon.
Unfortunately for us, no one can be that pumped on adrenaline 100% of the time, and once we crash - we crash hard. Often, after having a day of escape, using all of the adrenaline we can muster for an everyday activity like having a shower or making a meal, we can crash so hard as to be immobile for several days. Actually going out for some enjoyment *could even* land us in the hospital because of the brutal fall.

Adrenaline allows us to feel normal every now and then. It gives us an escape.
Too bad it isn't something we can maintain long-term.

The Lighter Side of: Migraines

Migraines are one of those symptoms where if you do not know whether or not you have had one, then you have not had one. You know if you have had a migraine.
I have experienced more than my fair share of illness and pain over the years, but migraines *usually* take the cake when it comes to putting me out of commission.
I am one of the lucky ones, though. There is a medication that I take for them that is incredibly effective, kicks in fully within 30 minutes, and has very few side effects. I also do not have to worry about taking it during the day because, when I have a migraine, I have already written the day off. This medication makes me super drowsy and I often sleep for a few hours after taking it.

Did you know that there is such a thing as a stomach migraine?
While this is more prevalent in children who will later develop migraines, they can happen in adults.
Due to my Crohn's Disease, I will never truly know whether some of my episodes have been stomach migraines, but I remain convinced that I do experience them every so often.
Why??
Because sometimes, when I have a migraine and my intestines and upper abdomen are also excruciatingly painful, with excessive nausea, and some vomiting, if I take my migraine medication, it takes care of both affected areas.
Medication that is tailored for migraine headaches should not work on abdominal pain unless it is migraine-related.
Though it is possible that simply the pain and nausea is my Crohn's reacting to the severe pain in my head.
I may never know for sure. It also doesn't really matter, as stomach migraines are not exactly dangerous. If something works to ease those symptoms then it doesn't really matter to me exactly what they are.

The Lighter Side of migraines is that even when they become all-encompassing, there are options for relief. There are many was to battle migraines and I have been fortunate enough to experience effective relievers. There are medications, there are Botox treatments, acupuncture treatments, tea, supplements, and even physical activities that can help ease the pain of migraines.
The Mayo Clinic, WebMD, and HealthLine all have some great tips on how to treat and prevent migraines in natural ways as well as types of medications that may help.
**The best course of action if you are suffering from migraines on a regular basis is to consult with your physician.**
As with all symptoms, even common symptoms can be something unexpected, so speak with your physician if you have had an uptick in migraine headaches, and pay attention to accompanying symptoms. Even if you have been diagnosed with chronic migraines or recurring migraines, discuss any changes in your experience.

Philosophizing

After watching the news about the discovery of fluid within the heart that helps to heal - the fluid that is usually thrown away during surgeries, it had us discussing other organs that had been previously mysterious.

Did you know that if you have appendicitis that requires removal, your chances of developing any Inflammatory Bowel Disease after the fact is drastically reduced? That it is almost a guarantee not to develop it if you have appendicitis?
**please note that I learned this several years ago, so I am unsure of the real numbers.

So we were wondering if the appendix has a larger role in the idea of inflammation. Almost as though we are born with inflammatory cells that roam around, waiting to be activated, but that the appendix actually draws them into itself to then be ejected. If the appendix does not do its job, then those inflammatory cells are free to roam every other area of the body, infecting everything as it goes.
That visual makes sense as to why a person with one inflammatory condition often develops one or more additional inflammatory illnesses.

I have always visualized my cells systematically attacking all of my organs at different points in my life - often residing in one organ long-term and moving to other organs for short-term inflammation.
Perhaps if my appendix had drawn in all of this inflammation I would suffer with much less of it... but the inflammation hit my large intestine and pancreas before my appendix ever had the opportunity.

Random ideas.

The Lighter Side of: Inflammation

Inflammation can be horrendously painful.  It is, also, often difficult to explain or understand. There have been various descriptions that I have heard over the years. These descriptions include rug-burns, actual second-degree burns, open wounds, rash, sunburn, 'on fire', a burning sensation, raw, and the like.

But how do we really get across what inflammation truly feels like when no one can see it, unless they use scopes into the internal organs affected.

There are quite a few conditions that result inflammation of the skin. These illnesses can be diseases all on their own, or they can be symptoms of another illness altogether. They can be side effects of medication. Whatever the case, suffering from illnesses/symptoms like Psoriasis, Rosacea, Inflamed Acne, or any other physically visible inflammatory condition, is incredibly painful, but more easily understood.

If we take a look at photos of skin inflammation, of psoriasis or rosacea, of an awful sunburn, and transfer that idea to internal organs, maybe it would offer some clarity. Imagining the worst sunburn you have ever experienced, and put that inside your intestines. Or on your liver. In your throat. In your brain. Behind your eyes. In your bladder, your pancreas, your ovaries (if you have them). Imagine bones - burning. Nerves - burning.
Except there is no topical cream, no aloe vera, to numb the pain. The best we can do is take something - orally, via injection, or other methods of medicating. The pain can become so awful that we reach for any promise of reduced pain - anything to dull the burning sensation, if only for just a little while.

As always, though, there is a silver lining.
Inflammatory conditions often result in intermittent pain; it comes and goes in waves of flare-ups and bouts of remission (though not always). This pain has the potential of being suppressed - with medication or alternative pain relief, or with methods of distraction. 
For many people, suffering from one inflammatory condition does not usually entirely disrupt one's life - it is possible to live a normal and fulfilling life.

The Lighter Side of inflammation is that it often comes and goes. It does not usually stay intensely severe for long periods of time, unless it remains uncontrolled. It may not be well understood, it may be both difficult to live with and difficult to explain, but it can be manageable. Plus, there are so many different people with some form of inflammation that there is an abundance of information on the subject as well as anecdotes that may help another with coming to terms with such diseases.

The Lighter Side of: Using a Cane

Having difficulty with mobility is not exactly a positive thing. With deteriorating back and hips, mobility can take a big hit.
I first began using a cane when I was 26 years old. I often have a limp due to pain and muscle spasms in my back and hips, and my energy levels have dropped tremendously from my body constantly battling itself.
Using a cane was a hit to my pride, but it also opened up more opportunities. The same thing occurred when I began to need a wheelchair for certain outings.

The Lighter Side of using a cane is that you can find very pretty, sparkly, or interesting canes for all occasions and all sorts of extra little parts. You can find handcrafted wooden canes, canes specifically for ice and snow, collapsible canes that can fit in a purse, or even canes with a secret compartment for pills or other small items.
Plus, if you cannot walk very far without an aid, a cane can give you the opportunity to get out more! It is even better if you are deteriorating slowly enough that you can use a cane when you need it, but can forego the cane if you are having a better day.
In addition to all of that, when you are someone who requires a cane (especially if you are a young person), people are often a little more kind. They may ask if you need help, hold doors open for you, you might get some special treatment or some nice parking spots, and it can even spark conversation. It is not all bad to be losing mobility. That doesn't mean I'm happy about it, but there are some silver linings.

The Lighter Side of: Dry Mouth

Dry mouth is often a much-overlooked symptom that can be really irritating. It can be caused by a disease itself, by side effects of medication, or symptoms of something quite minor. Either way, it's an annoying symptom that can interrupt the most mundane tasks.
Talking becomes difficult, singing is almost impossible, and drinking water almost never quenches this kind of thirst. The only way to really improve this symptom is by encouraging your own production of saliva. That is what xylitol does.

The Lighter Side of Dry Mouth is that there are products out there that really help. It also encourages you to drink more water - which is rarely a bad thing. More water overall is something we could all use.
Some of the products out there include Xylitol Tablets - these are usually fruit or mint flavoured and can be found at pharmacies and often at dental offices. Xylimelts are mint-flavoured tablets that have a melting edible backing that actually sticks to your teeth/gums. So you press down on the tablet on the face of a back molar (so no one can tell), and it increases saliva without being uncomfortable. Plus, it acts as a breath freshener..
Then, there are many types of gum that contain Xylitol. Trident Vibes is a new one that I am aware of.

*Just be careful to keep these products away from your pets, as Xylitol is very unsafe for pets.

The Lighter Side of: Exhaustion

Exhaustion is an enormous part of being ill on a regular basis. Not only are you always trying to feel better, but your body is constantly fighting inflammation.
I read an article recently about how they have discovered that low-grade inflammation reduces dopamine production, which in turn causes a person to feel more tired, more lethargic, and become less productive. The goal for the body is to conserve energy so that there is more energy to fight off inflammation.
So you can imagine why it is so common to feel sad, depressed, fatigued, and not wanting to do much of anything at all, if someone has constant inflammation.
When your body is fighting day in and day out for years and years and years, fatigue is often the only method of conserving any energy at all.

The Lighter Side of Exhaustion is having naps.
Naps are an underrated joy of adulthood.

Naps are best taken early in the afternoon and for 2-4 hours - not so long that it results in insomnia during bedtime, but long enough to really feel like a deep refreshing sleep.
Naps are best with cuddles, background noise, and in undergarments worn with whatever you were wearing during the morning.
If done right, naps can be rejuvenating. They can make it feel like a brand new day, with new day energy.

Unfortunately, illness can mean that naps sometimes make things worse. This is where we need to be careful. There are days when a nap will turn into two or three days of straight sleep. Other times naps may be ended with severe nausea and pain, worse than before lying down.

So nap carefully, nap well, and embrace the fatigue and exhaustion. It is, essentially, your body telling you to rest so that it can continue fighting off your traitorous immune system.

The Lighter Side of: Reliance

I think one of the toughest parts of any illness or disability is having to rely on others. The loss of independence is a huge hit. It is not something you can mentally prepare for. The most independent of people are caught off guard even more. It is more than frustrating - it is damn devastating.
It is devastating to accept the fact that you cannot do everything on your own.
Coming from a girl who desperately clung to her independence, even while severely ill, for so long - backpacking through Europe alone in between Remicade infusions, loving living alone, going to the ER countless times alone, dealing with all of the nitty gritty disgusting and embarrassing symptoms ultimately alone - losing independence is brutal, no matter how slowly.
Those moments where you have your dog help you pull yourself up from the bathroom floor just to call 911. Those moments when you ask acquaintances for help and they say 'no' because they are out partying. These are the sobering moments of illness that remind you that you have to be strong enough to deal with it all yourself.
But there is a silver lining. There is always a silver lining...somewhere.

Through these devastating losses of independence, your true family will step up to help. I have been exceptionally fortunate in my group of friends and family. I have the wonderful luxury of knowing that if I need help and ask for it, I have a list of people who would step up however they can. I have a spouse who understands my abhorrence for needing help to do some of the simplest of things. I have family who go above and beyond every single day.

The Lighter Side of: Reliance is that through loss, you find the people on whom you can rely. You find these gems in your existence who are not only supportive on social media and are your biggest fans, but people who understand you, who understand what you need, and who lend more than just a helping hand when you finally break down and ask.
It is never going to be perfect. People - even the best of them - will let you down in one way or another, and sometimes you may have to remind them that it kills you to have to rely on them, but they will come through.
Losing independence means a simultaneous loss and gain of friendships. I am proud to be surrounded by people who are thoughtful, genuine, kind, compassionate, understanding, and just upstanding people.

The Lighter Side of: Crash Days

I have always wondered what goes on internally when my body crashes. It is not exactly like I choose to lie down or do nothing when I crash. It is more the proverbial 'hitting a wall', mentally, physically, physiologically.
I wonder - if we took an MRI or some sort of imaging of my brain at the moment of crashing - what would we see?
Would it resemble a computer's 'blue screen of death'? All systems shutting down at once? Would it resemble a blackout, all little lights flashing off then turning back on? Would it be like the electronics in stormy weather, flickering, static, spotty communication?
Or would it show nothing at all?

I don't think it would show nothing, but I don't know if we have discovered the actual physiological reaction of someone who has 'crashed' from chronic illness.
It is more than just feeling exhausted and having a nap.
You know when you have been too active - pushed yourself too far - and the lactic acid has built up in your muscles?
It is sort of similar.
It is more like accidentally taking a huge gulp of boiling hot water that you thought was not boiling. You feel the burn go down your esophagus and into your stomach, but there is nothing you can do to improve the discomfort. You can try eating carbs or drinking cold water, but the damage is done. So you start to fidget and move around and flail about, hoping to distract yourself from pain.
Crashes are much like that. Every part of your body feels burned from the inside out. A build-up of acid - in your organs, in the cavities that house your organs, in your brain and bones and muscles.
You become irritable and begin to feel like you may collapse (and sometimes you do collapse). You feel like you have NO idea how you are even going to make it through the day.
So when you finally have a moment to lie down, your body shuts down entirely. You fall into this restless kind of sleep where you forget where you are, who you are, and what you're doing. The entire world melts away as though you have mentally left that world because your body can very literally take no more.

My crash day was yesterday.
I had hoped I could make it until today because our youngest pooch had an appointment yesterday that I had to take him to by myself but, alas, it was yesterday. Nothing was working. Everything was hurting. I could not think straight and it took ALL my stores of energy just to get him to the appointment.
He was whining, Decker was whining when we were leaving, I forgot doggy bags and had to go back. Then I forgot his obligatory stool sample and had to turn back. I was stressed. I was angry - really angry - for no real reason. I felt a strong compelling urge to punch things and scream.
Instead, I sat in my car and cried for an indulgent moment, then got on with the day.
When we got home, I got the boys lunch, then I went to lie down in the bedroom without even putting the little one in his kennel.

Somewhere in that crash, Rj had come upstairs, took the dogs out, shut the doors. I apparently had put an eye mask on and earplugs in. Total escape. I crashed for over two hours. Woke up with a fever and excessive dry mouth. Felt like I had been hit by a train. This crash did not at all affect my sleep last night either.
That's also a good indication of a crash - a 2 hour nap in the afternoon causes zero difficulty falling asleep later. I did have trouble relaxing to fall asleep though, but that was because of pain, not insomnia.

Today is the after-effect.
Not as angry, not as frantic, more just physically exhausted. So I am cuddling with the puppies. I am watching Netflix. I am watching the rain outside, drinking Boost so as not to irritate my intestines further. Today will be filled with tea, hot chocolate, Boost, maybe jello or pudding or yogurt, ice cream, lots of movies, puppy cuddles, and a backrub later.

For years, these crash days would happen once a week, then they reduced to once a month. Now, because I have not been working, these crash days happen 3 or 4 times a year. They happen when I try to do too much. They happen when I do not allow myself enough break time.

The Lighter Side of: Crash Days is that they FORCE you to take a much-needed break. Crashes allow our brains to disappear, without damage. They require resting, easy soft foods, and lots of lying down. I am not expected to do anything. I am not expected to even be awake through the whole day. I am cuddled and held and waited on (a little bit). Most of all, though, I am through the worst of it.
The best part of crash days is the ice cream. No guilt, eating out of the tub, like a bad breakup. My usual tub of ice cream of choice: Turtles.
:)

The Lighter Side of: Severe Flare-Ups

Flare-ups are a normal aspect of the life of any chronic illness patient.
There are countless diseases that include both constant symptoms and intermittent symptoms. Diseases like Inflammatory Bowel Diseases often induce daily symptoms (like intestinal cramping and pain, nausea, several bathroom breaks) that are consistent, even during times of remission. Then they have intermittent symptoms that show up during flare-ups, like blood, incontinence, increased pain, increased bowel movements, difficulty eating, sudden weight loss, etc...
The incidence of flares are spread out differently for every person. For someone with active disease and no points of remission, these 'flare' symptoms can be daily. For another, flares might only occur once or twice a year.
For the majority of patients, these flare episodes are usually severe but short-lived. Temporary. A week of excruciating, and often unbearable, pain, followed by months of recovery.
These flares may not always last long, but it often takes a patient months to return back to what they consider their normal. If a flare-up causes blood loss, sudden weight loss, nutrient loss, and widespread inflammation, it is no wonder that the body remains 'injured' for long periods afterwards.

Patients with these types of diseases - and there are many of these types - often become accustomed to these brutal flares. Not that they 'get used to' the symptoms in the sense of having the pain become easier, but in the sense that it becomes a part of normal existence.

The Lighter Side of Severe Flare-Ups is that, after we have dealt with one, we come to find out how strong we are. Severe flare-ups remind us what we can actually physically get through. They remind us of our own strength, when we so often feel incredibly weak. Other difficulties in life become less daunting, our pain tolerance increases, and we come to realize how much we can truly handle. That we are formidable. We are resilient. We are mighty. We are tough.
We are oustandingly capable.

The Lighter Side of: Insomnia

I don't even know why I cannot sleep.
I did not sleep well last night either and nearly fell asleep standing up this afternoon. I resisted the urge to nap, though, because I wanted to be able to sleep tonight.

As it stands, it is currently 5am and I have yet to sleep.
I am sure there are lots of reasons why my body is keeping me wide awake. The hives all over my face count for one reason. Recent changes in medication counts for another. Too many things on my mind is a clear reason. Maybe being over-stimulated while I was participating in art therapy today? Or maybe it's the bloating, the pelvic cramping, the swollen chest. Or maybe it's just from being hungry (I am trying to rein in my eating habits a bit... I have been baking a little too much lately and it is fairly visible).
I don't know.

Here is The Lighter Side of Insomnia:

I am super productive in the middle of the night!!
I used to be a night owl, so this is my time of the night. I had fun trying out some painting projects, I read through about 20 chapters of the new book I just picked up off of the shelf. I did some posting, I did some stretching, I am clearly writing a blog, I went through an updated list of priorities and projects. I also managed to go through some videos of music and schedule them to be posted over the coming months.
Today was productive! Tonight was especially so.
Thank goodness it is kicking me in full force over a long weekend and not the night before any important appointments.
Tomorrow I am planning on going and getting some Benadryl for these damn hives anyways, so I *should* manage to have a better sleep tomorrow night.

Happy weekend!!

The Lighter Side of: Lots of Pain

There are millions of illnesses that cause pain of some kind.
Suffering from several diseases usually means several types of pain - from the disease itself or from medications or extended issues.
The most devastating part of dealing with several types of pain is that the mind adapts by learning to register multiple pains at once.

There is a positive side to having several types of pain and lots of it, I promise.
Pain tolerance increases.

The Lighter Side of Lots of Pain is that pain from more common types of temporary ailments are dulled and do not seem all that painful. Having a high pain tolerance means that your body is better able to adapt, so someone else's 8/10 pain may actually feel more like a 3/10 for you because you are already dealing with severe pain.
A severe headache for a healthy person is like a small twinge for someone with consistently painful illnesses.
A torn muscle feels more like a dull ache.
A stomach flu feels more like bloating.
You may not even notice bumps and bruises, or mistake a sprained ankle for muscle tiredness.

Suffering with lots of pain on a regular basis can mean that you can handle lesser pains more easily.

The Lighter Side of: Seized Muscles

My back seized today.
I was not doing anything particularly physical, I simply sat down on our ottoman and went to pick up a ball from the floor to play fetch with the pups.
My back - on the left side - seized. Abruptly. Painfully.
I immediately dropped the ball, tried to stand, and proceeded to stretch until the pain began to subside. It left me breathless when it hit, and tears welled up instantly, but it DID subside.

The Lighter Side of Seized Muscles is that it forces you to take a few moments to stretch it out.
I have been incredibly sore, so I have had to rest quite a bit. Unfortunately, too much rest is just as bad for me as too much activity. Having a back-seizing wake-up call forced me to do a little bit of stretching. Not just until my back relaxed, but until I felt a little more 'warm' within my muscles.

So stretch it out!!