What's So Difficult About Chronic Illness?

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

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

So here it is - from my experience of things: 

It hurts to eat. 

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

It hurts to see. 

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

It hurts to walk. 

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

It hurts to breathe. 

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

It hurts to go to the washroom. 

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

It hurts to be intimate. 

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

It just hurts. 

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

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

A Malfunctioning Ship

If you haven't seen the movie Passengers, there are spoilers below. 

In this movie, the ship that the passengers are traveling on starts to malfunction. Slowly, one system after another seems to become problematic. Not all at once. Not in the same location or in the same way. Not necessarily even related. 

When the main characters finally access a virtual diagnostic tool of the ship, it shows widespread system malfunctions. 

They know that this is probably caused by something larger - some damaged part of the ship - but they have to go looking for it. They have to search every inch of the ship to find it. Even though it is a massive malfunction, it still takes time to find, and the longer it takes to find the source, the more widespread and drastic the system failures become. 

This is how I feel. 

It started with the digestive system. Intestinal inflammation, ulcerations, physical damage. (Dx: IBD, large intestine removed in 2003 with an ileostomy, then an internal J-Pouch created in 2004, Crohn's Disease followed)

Then more organs were affected. 

My thyroid was then involved. (Dx: Hashimoto's)

My liver and pancreas. (Dx: PSC - secondary to Recurrent Pancreatitis, brought on initially by allergic reactions to medications)

My heart started showing signs of something being wrong. (Dx: Sinus Tachycardia)

My eyes started deteriorating. (Dx: AMD, then changed to Malattia Leventinese, plus Astigmatism in both eyes)

My skin developed scaly, flaky, rashes. (Dx: Psoriasis)

My uterus and ovaries had to be removed in 2017. (Dx: Ovarian Cysts, Chronic Pelvic Pain, pancreatitis associated with menstrual cycle, severe internal swelling episodes associated with menstrual cycle, myofascial pain disorder)

My gallbladder just up and failed. (Removed in 2019)

Frequent migraines. (Dx: Chronic Migraines

Swelling of my tissues. (Dx: HAE III ?)

Sacroiliac Joint problems, spine, shoulder blades. (Dx: Ankylosing Spondylitis)

My circulation became problematic. (Dx: Raynaud's)

Now, a sudden onset of asymmetrical hearing loss. (Dx: ??? - currently waiting for an appointment with an ENT)

And it's not like we haven't looked. I've been tested for several widespread, systemic diseases. Diseases like Lupus, Lyme Disease, Complement System Disorders, Blood Disorders, various types of Cancers.... many with ambiguous test results or inconclusive scans, or sometimes totally normal results. I have been tested for these things over and over and over again. Assumptions and diagnoses that seem to point to a larger problem, but hidden away somewhere that can't yet be seen. 

It just feels as though whatever the main problem is attacks a different system at a time. Sometimes I will have a persistent issue, with specific symptoms, and then it will just settle on its own for a while. Then another system gets attacked. 

At one point doctors were having me tested for autoimmune disease of my kidneys because they weren't functioning properly for a couple of years. 

My liver enzymes were high and my liver wasn't functioning well for three years before it was suddenly okay - despite there being visible physical damage and cirrhosis. It was just suddenly gone. 

I had mono one year, but because my immune system was suppressed, I wound up getting Mono every year for about 5 years. And then every 2 years. And then nothing. 

A random bout of Shingles. 

It's as though every couple of years, a new system starts to malfunction. Sometimes slowly. Sometimes so little that it's almost ignorable - explained away by medication side effects or comorbidities, or symptoms that I just hadn't experienced yet from the list of diagnoses I already have. Then, it hammers on that one system, it causes multiple episodes of the same symptom; the same attacks, and then, after a while, it slows down until it's more manageable. Though it never returns to full, healthy, function. 

It's hard not to imagine a widespread system malfunction. A lemon. Parts of a vehicle that continue to break, but mechanics can't diagnose the problem behind it. A domino effect. A butterfly effect. All different systems - some of which seem to have nothing to do with the other. 

And yet... maybe they do? 

Coping With Loss of Identity

It has been ingrained in us that much of our identity comes from what we do. What we do for work, what our hobbies are, what we do with the majority of our time. 

So what happens illness strikes, when age strikes, and starts to strip away those parts of ourselves that we had attached to our sense of identity? How do we cope with those losses that come over and over again? 

I think we need to reevaluate what identity means. We need to look at life differently in order to cope with these losses. 

Identity shouldn't be about what we do, but by what we enjoy, about how we go about life, about our thoughts and actions, likes and dislikes, how we relate to others, how we see the world. It should be about what we are passionate about, what encourages us to wake up in the morning to fight our illnesses another day. What makes living worth it. That should be our identity. What and who we love. That should be the measure of success, of who we are. 

If we can reframe our own definitions, then those devastating losses can be reframed in turn. If we can see our lives differently from the narrative that's been pounded into our instincts and views, it's easier to move on from losses to find new forms of identity. 

This is me: 

I am no longer a seasoned athlete. 

I used to play a lot of different sports at competitive levels. That's not true anymore. I still love sports. I am still an athlete at heart. Just because I can't play competitively anymore does not change who I am, because athletics is something that excites me and gets me up in the mornings. I have had to shift my activity levels - to yoga, or kayaking, or short walks, or swimming. My identity is more of the life I enjoy rather than the exact sport I play. 

I am a professional musician. I play piano and I sing. I no longer perform regularly, and I no longer perform competitively (at least not very often). That doesn't make me any less of a musician. I love music. I love learning new songs and practicing at home. I may not be able to perform as often as I used to, and all of my performances are now volunteer-based, but my identity is still as a musician. 

My love for horror and dystopian films is part of my identity. My ability to fall in love at first sight with every single dog, cat, or horse that I see is part of my identity. My love for artistry is part of my identity. My love for playing games - card games, board games, video games, computer games - with loved ones is part of my identity. My rule-following, people-pleasing, love for learning, love for reading - all of these things are part of my identity. My hatred for making crafts is part of my identity. My love for cooking and baking, my pet peeves, my annoying habits, my desire to dress up whenever I leave the house, my love for heels, my love for camping , my distaste for certain foods - all of these things make up an identity. Not necessarily a job, or what I have to do to survive, but all the different loves and hates that make up an entire personality. I will always look for ways to nurture all of these parts of my identity - whether in an active or passive way. 

Whenever a disease takes away one of these multiple facets of my personality, I try to find a way to shift with the direction my health is going. I try to come up with solutions. 

As an example: 

With being a musician, some medical truths have been difficult to accept. I have known for a few years shy of 20 years that I will go blind; my central vision will erode. It means that reading music will become more difficult - but doable. I will have to learn braille. I will have to memorize more. I will have to rely on my ear. 

But this year, I have had some issues with my hearing. I don't know what will happen because I don't even know what the problem is yet - and I will likely have to wait for a year before I can see a specialist to get answers. It is *possible* that I may also go deaf. From what I've read, it is unlikely, but I have to admit the possibility, considering I already have some hearing loss. 

So what happens, as a musician, if I go both blind and deaf. 

The answer is: I guess I will have to rely on muscle memory, and other people to help me. I will have to go entirely by touch when playing the piano. I will have to rely on my years of experience knowing where certain pitches sit on my vocal cords.

I also know that it is possible. If I have to do it - I will do it. I will learn how to detect frequencies based on how the sound feels in my body. I will learn how different vibrations feel in my hands. There are many aspects I will not be able to do - but there are many that will be doable, even if the worst should happen. 

That ^^

Right there. 

That is how I cope. 

I come up with a game plan. I shift my thinking. I find ways to look ahead, to see the possibility, and I focus on that as much as I possibly can. 

Railroaded

What happens when you feel railroaded at an appointment? 

With multiple chronic illnesses, some that have atypical presentations, the medical system becomes even trickier. 

In my opinion, appointments where I feel railroaded often include a change in diagnosis or medication, often from a physician I have just started seeing, who speaks in a condescending manner (whether intentional or not). In these appointments I often feel as though I have to fight for my voice to be heard. 

The vast majority of these appointments (as sad as it is to say) have been with male physicians when I have not had my husband present (or my dad in my earlier years). 

That's not what this post is about, but it is a factor worth mentioning. 

I had one of these appointments this week. 

Here's some background before I get into the specifics of the appointment: 

When I was 19 years old, my optometrist saw drusen building up in my eyes. Two years later, I had more of them, and they had grown, so he sent me to two separate ophthalmologists. Scans and pictures were taken, special tests were done at the hospital, and those two ophthalmologists sent those scans away to other ophthalmologists to consult. What I was diagnosed with was an early onset Age-Related Macular Degeneration (AMD). 

It was a shitty diagnosis, but one that was made with extreme caution and careful consideration. It was also a complicated one, because it is not supposed to happen in people under 65 years of age (as I was told then) unless it is a juvenile presentation called Stargardts, which mine was not. 

Since that time (nearly 16 years ago), I have been followed very closely, every six months by one ophthalmologist or another, along with regular optometry visits. During that time, my scans have been sent to a further 4-5 ophthalmologists - some out of province - just to consult. 

There is no concrete theory on the cause, apart from a potential connection to my complement system problems. It was agreed that while extremely strange, there has been no question about the clinical presentation of Macular Degeneration. 

This week I saw a new ophthalmologist, since my previous physician has lightened his patient load to focus on emergent cases only.

Before this new physician even sat down, his exact words were: "So you've been told you have Macular Degeneration?" in that seemingly condescending tone that I have heard before. Immediately my back is up and I respond with yes, and that multiple ophthalmologists have consulted on the case, including my previous specialist who is a managing partner of this clinic and who works in the same building. 

Despite my history, he instantly (and unilaterally) decided to change my diagnosis to something called Familial Drusen. It usually requires multiple family members to be afflicted (which is not the case), though, I have been told, can skip generations. It does not always cause vision changes, but mostly it resembles AMD.  

There are several things that upset me about this:

1. His arrogance in assuming he knows better than the various doctors I have been seeing. 

2. He actually said that, clinically, it looks and behaves like Macular Degeneration, and that if I were 50 years old (now that that the 65 year old marker has changed), that would be my diagnosis, but because I am 36, it is atypical. 

3. If there ever is a treatment for AMD, I may not be able to access that treatment because I will no longer have that diagnosis.

4. He very literally said it is a matter of "semantics" and "nomenclature" - by which I now assume that he meant that I am experiencing degeneration of the macula, but that he disagrees with the diagnosis of AMD specifically. 

5. He had only seen my scans from this week and from 2020, not my written history or scans from 2005. 

If he truly believed it was an entirely different disease, based on physical scans, something newly discovered about the disease, or even changes in the way my particular disease is behaving, then by all means I always want the correct diagnosis if it can be found. But that's not what he did, nor did he effectively explain his reasoning. I am not in the textbook expected age group, and he didn't like the wording, so he changed my entire diagnosis - which could cause issues in the future. 

I left the 10 minute appointment with him feeling utterly railroaded. It happened so quickly that I barely had time to collect my thoughts, let alone ask the right questions. 

I go into these appointments knowing that the physician is the expert so I defer to his knowledge... but after the fact, when I realize what all just happened, I feel helpless and a pit-gut feeling. 

So today I actually decided to call and speak with someone from his team, expressing my unease at how the appointment went. I explained that I did not understand exactly why the change was made apart from my age, that I have spent 15 years thinking one thing and now it is suddenly something else, and that I felt railroaded. I mentioned that I looked up the disease as he had asked me to and the criteria did not fit either - I would be atypical for someone with Familial Drusen as well. She asked me if I wanted him to call me back, and I explained that I would feel better if he consulted with my previous ophthalmologist first, since they work in the same building. 

I received a phone call back - and he said he had consulted with my previous physician, and said that that physician agreed with him that the diagnosis should be Familial Drusen. He also answered some of my questions, and he apologized when I said he seemed to dismiss my drusen as having no effect on my vision. He said that he "assumed" I was "asymptomatic", to which I replied that he had not asked, and that my vision has been distorted and worsening for years now. This, he would know if he had reviewed my history at all beyond the scans. Overall, he did address my concerns, he said he consulted with another ophthalmologist, one who I have great respect for, and he did seem to listen to my concerns. 

Then he reminded me that this is good news. 

If any of you reading this have chronic illness and have experienced appointments like this will know what a bullshit comment this is. I DO NOT WANT this disease - or any disease. What I want is the correct diagnosis - so forgive me for my skepticism in a doctor coming in brand new and not knowing my history in the slightest and changing my diagnosis after 15 years, while simultaneously dismissing my symptoms and ignoring my history. So yes, if this new diagnosis is correct, it IS good news. The prognosis is potentially better than full-blown Macular Degeneration. 

Then he also reminded me that he consulted with my previous physician to do his due diligence and not because I asked him to do so. 

It should feel like great news. 

It doesn't. 

I am still going to lose my vision, and now I am with an ophthalmologist that I am not sure I can fully trust, at least not yet. This means that I either ask to be seen by someone else, or I ensure to bring my husband with me to these appointments each time, or I pay an arm and a leg for genetic testing for both diseases so that we can know, for sure, that I do have Familial Drusen. 

In any event, I am stuck feeling confused, uneasy, anxious, skeptical, and railroaded. If this physician had gone about the appointment in a different way, even with a big diagnosis change, all of these negative feelings could have been entirely avoided. 

I am not a doctor. I care that this is another diagnosis that seems to be a question mark. Like I'm not quite on solid ground with this diagnosis either. 

Diagnosis whiplash over here. 

So frustrating. 

Perhaps genetic testing will give me that solid footing that I so often lack with my atypical presentations of not only diseases, but of experienced side effects and reactions to medications. 

Rare Disease Day - Mind-Blowing Daily Symptoms

Feb 28 is Rare Disease Day! 

What very normal/daily symptom do you deal with that would be considered mind-blowing to someone who has never dealt with illness? 

Even though the swelling diagnosis is up in the air for exactly what it is, the default potential diagnosis that I have is HAE 3, which is considered a rare disease. So, since I started experiencing frequent and drastic swelling, I think the 'normal' symptom I deal with on a regular basis is the chest and intestinal swelling due to emotions. I have to keep as even-keeled as humanly possible to ward off serious swelling in my chest and intestines. Any normal emotion that sways off of even is risky. A chest/throat swell will cause breathing issues and could cause what is often mistaken for anaphylaxis. I get chest swelling from simple nerves, ANY intimacy whatsoever, physical exertion like a workout, if I'm upset or angry about anything at all, or a startle. The intestinal swelling can happen from eating something wrong or too much or too little, nerves, intimacy, hormone changes (when I had my ovaries I would have 6-10 hour long vomiting fits every month along with my period), etc... 

So everything that we do normally - things like eat, have emotions, have sex, work out - I have to constantly and consciously think about and be cautious about because it might result in me giving myself an IV or a trip to the ER and be treated for stridor breathing, breathing difficulties, or organ swelling. 

I mean, can you imagine getting cut off in traffic, or having an argument with a partner, and have to ALSO worry about literally not being able to breathe because of it? Because of a normal and common emotional change...

I would love to hear what normal/common/daily symptom(s) you deal with that would seem mind-blowing to healthy people. 

A few answers that were given include constant nausea, constant pain in multiple places, swollen purple toes, etc... 

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

February Chronic Illness Warrior Question: 

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

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

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

Stranger Than Fiction

If you have read my last post, you will remember that I have been dealing with a brand new (and life-disrupting) symptom - with a side of the absurd. 

Since Thursday night, just before 9pm, I have been BURPING, nonstop, during my waking hours. 

I mean nonstop. 

My husband even began counting the seconds between burps. During the worst moments, it is every 5-7 seconds. During my best moments, I may have a minute between burps (the moment I wake up or right after a series of deep, long, gastric belches, or after going to the washroom). 

Most of the time I burp every 10 seconds. 

If I DO manage to suppress the burping (because it is exhausting), or when I am asleep, you can audibly hear the rumbles from the air building up in my stomach/intestines instead of being released by the burps. What makes it worse is that burping doesn't relieve the pain, it just ensures that my insides don't explode from the constant air being forced into my digestive tract. (I don't know if that could actually happen, but I wouldn't put it past my strange body). 

So, at this point, my body has been producing an inordinate (and disturbing) amount of gas for 112 hours thus far. 

Not to mention that this is on top of a relatively common Crohn's flare that began just over 3 weeks ago.  

Without going into too much *tmi* kind of detail, my current flare has included: 

16x/day bathroom breaks, blood, abdominal pain, exhaustion, some nausea, urgency, near misses, skin issues, weakness, and necessary diet changes. 

With any Crohn's flare-up, I have had to reduce what I eat. 

For the past 3 weeks, I have reduced my diet to soft foods and full fluids. After 2-3 days of mostly fluids, I would attempt some solid food, then revert back to fluids when it didn't work. This back-and-forth dietary experiment will go on until solid food actually gets absorbed and doesn't cause horrid pain. 

The burping has not improved the food situation. It is possible that there is some sort of blockage happening, but I won't know for at least a few more days. 

I spoke with the nurse at my Gastrointestinal Specialist's office about the incessant burping, the flare-up, and my visit to Urgent Care. She relayed that information to my GI and I have been booked for a scope on Thursday to see if we can find out what is going on. 

So here's the fun part: 

Left without any actual answers, I spend much of my resting time trying to describe how this feels and coming up with ridiculous reasons why I am burping constantly. Some of these are actual potential issues, while others are just for 'fun'. Let me know what your favourite explanation is:

1. A SodaStream has been placed in my abdomen - forcing bubbles to build up in my system constantly. 

2. A fistula has opened between my trachea and my esophagus, so every breath I take sends air into my digestive tract. 

3. There is a mini volcano in my stomach spewing a forceful pyroclastic cloud throughout my system. 

4. A chemical reaction between soda pop and mentos is replicated by the chemicals within my stomach. 

5. There is a blockage in my intestines that is squeezing air back up (and some past) the blockage. 

6. There is some super-mutant bacterial infection that has made a home in my intestine that is spewing bubbles every moment of the day. 

7. My body has decided to become its own floatation device - and that requires lots and lots of air. Whenever I burp, it is seen as a leak, so my body reproduces that air. 

8. My body reeeeeeeeeally wants to be featured on an episode of House, Simpsons, Seinfeld, Family Guy, etc... so it keeps coming up with stranger-than-fiction type symptoms so that I can sell the rights to the stories. Hiccupping nonstop has been done, but has burping?! (P.S. if this turns into an episode after this post, I better be involved). 

9. I have some sort of gastric ulcer or gastritis that is somehow speedily creating air pockets. 

10. This is simply a new flare-up symptom. 

Any other strange ideas or funny visualizations are more than welcome. Comment with your favourites. 

I will keep you updated as this saga continues. 

This is also one of those situations when 'finding nothing' would not necessarily be good news. So, as usual, I am hoping for *something* to be found, but that it is non-life-threatening and relatively easily fixed. 

Burping every few seconds going on 5 days straight. 

2 more days before potential answers. 

Stay tuned! 

Perpetually Temporary State

Everything is temporary, we all know that, but when it comes to chronic illness, temporary is etched in our heads every single day - for the good and the bad. 

Planning ahead and thinking ahead while having active disease feels a lot like dreaming. I mean, I can plan all I want for the next several months, but every single morning I have to figure out what my body is doing and what my limits are all over again. 

Take my sleeping schedule for example: 

I have slept well for 7 days in a row. To some that sounds like heaven, to others that sounds like a very little snippet of time. Before these last seven days, I would have a decent sleep maybe once a week over the course of nearly 6 months. Before that, I would sleep too much a couple days a week and have insomnia the rest of the time over the course of another four months. The six months prior to that was nearly all sleep without ever feeling rested. 

Seven days of good sleep, for me, is something to be celebrated, because at any moment it could change. 

Every symptom, every medication, every bodily state is precariously temporary. 

Some symptoms, like abdominal pain and nausea, can go years without reprieve, while others can show up sporadically. This entire family of illnesses: inflammation and auto-immunity are terribly volatile and unpredictable. I have had 'stable' moments in time, or stable enough to make plans a month ahead without worrying every single day if I'll *actually* be able to follow through with it. Most of the time, though, I am a constant question mark. 

Even the years I was 'stable' enough to risk traveling had me worried I would have to cancel right up until the moment when the flight took off. 

It's this gnawingly and perpetually temporary state that helps me cherish every good moment. I want to take life in wherever and whenever I can! 

My good moments are temporary, yes, but so are my bad moments. With the nature of these illnesses, the bad stretches tend to outlast the good ones, but that is simply the reality. When one disease or another takes a turn, I know it could be months (at least) before it settles back down. So I brace myself for a few tough months and we all get through it the same as we have always gotten through them: pivoting and focusing on different goals or priorities, changing plans, modifying everything. 

But then when those good moments happen, they are so much sweeter and I am always so prepared to take advantage of every second. 

Trying to 'get used to' these quick state changes is never easy. 'Going with the flow' tends to be a lot more difficult when you're facing white rapids and whiplash, but it's better than always trying to push back - and it is nearly always to my own detriment. 

So take the good, take the bad, take the time to enjoy something in the midst of everything, knowing that everything is temporary. 

Liaison

Snowy days call for outdoor yoga practice. 

My day today is all about phone calls and filling out forms. 

Sometimes being the complicated patient means also being the liaison between specialists. 

Communication is not always easy when it comes to doctors from various offices and specialties. Not all of the information is easily accessible and it may involve various consent forms to release records to other physicians. 

It's not really a huge deal, it just takes time. Most complicated, though, is that it means that there are often 'too many cooks in the kitchen'. One doctor will interpret results in one way and another will interpret them differently. There can be differences of opinion and even power struggles. Navigating the politics that is healthcare can be horrendously difficult. It is easy to forget that they really are trying to give me the best care possible. 

It may become frustrating and seem rather difficult, and even confusing, to be asked to bridge the gap in communication, especially when the two doctors work in the same hospital, but I just remind myself that if it makes it easier for them, then they'll be more inclined to help. The more helpful I can be, the less time it will take for them to come to an agreement about my care.

That's the hope at least. 

Being a patient with several chronic illnesses often means interpreting what doctors are thinking, being a communication liaison, and keeping concise records about treatment plans and conversations. They are all connected, and yet they are quite disconnected simultaneously. 

Very much looking forward to the holiday week. 

Reading Back - A Week in The Life...

I have been in the strict habit of keeping a medical journal for years. 

I cannot take the credit for it, since I thought it was a ridiculous idea when it was first suggested to me to keep one. 

My mother, on the other hand and ever the teacher, thought it imperative that notes be kept. 

After a while I saw the value in it. The enormous value. 

I have two appointments coming up in which I need to reflect on specific episodes from my last appointment with each specialist - which is usually a year's time.  

Part of the problem with me is that I try to live day by day. When I wake up, I allow myself time to assess exactly how my body is functioning - I essentially scan every one of my systems. I mentally note headaches, nausea, swelling, digestion, sleepiness, heart palpitations, energy, alertness, joint pain, intestinal pain, muscle weakness, dizziness/lightheadedness, concentration, and probably twenty more daily symptoms. 

I am, more or less, figuring out how much battery life I have for the day and for any appointments/events coming up in the following days. 

Then I make a plan for what I can accomplish. 

If I have a super low battery, my plan would likely be to rest and read or lie in bed for the most part of the day, perhaps cooking dinner or trying to fold some laundry. If my batter is fully charged (which is basically at 30% when compared to healthy individuals), then I can maybe go for a walk with the dogs or run one or two errands with my cane. OR I could do something big like go shopping in my wheelchair or go for a dinner date with my husband.

So, for these appointments, since I live day to day, I cannot remember an entire year's worth of episodes and bad days. I specifically avoid tallying them up - it can become quite depressing. So I go through my notebook; my medical log. 

The unfortunate part about re-reading what has happened over the last year is that most of what I write in this notebook is all medical. Every single day. Bad episodes and crash days, migraines and swelling episodes, trips to emergency, surgeries, terrifying laryngeal swells that make it difficult to breathe, medications, reactions, side effects, etc... It is a frank and concise record of all the bad. I try to include the good stuff too, but they are usually written because the 'good stuff' is often what triggers the bad stuff. 

Frankly, it is bonkers. 

Here is a small tidbit (summarized, of course) of what my notebook looks like during one random week: 

June 9, 2019

• Decent sleep. Nightmares. One auditory hallucination. Wide awake after that, listened to podcast. 

• Went to a friend's. Could not drive. Lasted two hours, sitting, before I was sobbing from pain and had to leave. Exhaustion and lots of hip pain. Zero energy. 

• Low appetite. 

• Got home and took [medication]. Decreased the pain but also mental function - feeling frustrated. 

June 10, 2019

• Woke up with a brutal migraine. Light and sound sensitivity. 

• Body exhausted. 

• Shooting pains in lower back and out to my hips. 

• Can't seem to fully wake up. 

• Crashed in the afternoon from 4pm until 7pm. 

June 11, 2019

• Actually slept really well! 

• Felt more like myself today. 

• Received a call from neurology for an appointment this week. 

• HAE Injection

June 12, 2019

• Throat swelling - personal stress

• Migraine

• Nausea and two vomiting fits

• Loopy, rocking back and forth, could not kick the nausea. 

• Felt sleepy all day but stayed awake and then insomnia kicked in in the evening. 

June 13, 2019

• Woke up nauseated.

• Frustrated with new medication regimen, body is having trouble adjusting and I am having adverse reactions to one med. 

• Appointment with Neurologist 

- wants to try me on a new prophylactic medication to help with the migraines.

- should not do cortisone injections anymore for AS since it triggers constant migraines. Try to avoid oral prednisone when possible as well. Might not be dangerous, but isn't positive. 

- sleep deprivation is a huge trigger. 

- will see me in 6 months. 

June 14, 2019

• Busy day. Did some singing - Rj had to help. Pain is really high and I did NOT sleep well. 

• Managed a SHOWER today! Really nauseated afterwards and some dry heaving but no solid vomit. :) 

• Had to make a long drive today. By the time I reached my destination (2 hours), I was having severe intestinal bleeding. Bright red blood, couple tbsp every half an hour or so. 

• HAE Injection

June 15, 2019

• Okay sleep. Trouble falling asleep. Lots of bathroom breaks. Lots of blood. 

• Headache in the am. 

• Throat tightness. Bad body swelling. Took additional HAE injection.

• Shoulder blades feel like they are grinding. Can barely stand up straight. Nauseated. Difficult to twist or move. Used muscle creams to numb my muscles. 

• A little less intestinal bleeding today. 

• Headache turned into a full-blown migraine. 

• Have hives on my face and neck. New medication from neurologist? 

June 16, 2019

• Had an okay sleep. Too painful to find a comfortable position until 5am, then was so tired I finally passed out. 

• Everything is sore today. Zero energy. Feel a major crash coming - likely tomorrow or Tuesday. 

June 17, 2019

• Super sore today. Muscles, joints, stomach cramping, headaches, nausea, fatigued. 

• Spent 90% of my day in bed, resting. Had to stretch and reposition often, but could barely leave the bedroom to eat. 

• Painfully swollen - body swelling. 

So there is a bit over a week in the life, etc... etc...

The week above is a normal week. I would never even remember that I had any specific migraines, swelling episodes, or a Crohn's flare-up because it was not anything out of the ordinary. The episodes I do remember usually involve ambulance trips, trips to the ER, hospital stays, or huge life events. So I need this log to remind me of how often certain episodes are occurring so I can give that clear picture to my physicians. Otherwise I would gloss over the year with estimated (and incorrect) guesses. 

You would not believe what is in these notebooks. Honestly. It looks absolutely absurd. Even when I read these books, if I look at it as objectively as I can, it makes me wonder how anyone can have even a fraction of a normal life with everything else going on. It looks irrevocably sad. 

And yet, I wake up happy nearly every single day.... 

I am one of the lucky ones. 

The Lighter Side of: Little Extras

It's not always the big symptoms or diagnoses that really grind someone down. Sometimes it's all those little extra complications - the unexpected and seemingly small ones - that turn out to be the final straw.

See, when we are faced with a large problem, we can run towards it, head-on, and know exactly what we are fighting. Sometimes the problem is so monumental that we cannot even fully comprehend the magnitude of the problem, which can be a good thing. This 'big thing' becomes a symbol of a conquerable force. We can see it. We can face it.
We can easily look up at a mountain and have hope.
We save our energy and put it towards fighting the big fight.

When we are faced with illnesses like Inflammatory Bowel Disease, Autoimmune Arthritis, Liver Disease, Multiple Sclerosis, Kidney Disease, Lupus - we understand the fight we have ahead of us. We know that these are big diseases - we understand that we are going to have to fight every single day. There is hope, though, that with the right treatment plan, the right diet, the right amount of exercise, the right team and support system behind us, that it is conquerable. We know that it doesn't necessarily mean curable, but that we can still maintain a very fulfilling life if we work hard and fight.
But what about all of the little things along the way?

When we are trying to handle major symptoms and entire illnesses full of a multitude of symptoms, the more 'minor' symptoms get pushed to the side as collateral damage.

Examples may include headaches. Severe nausea and vomiting. Bloody stools. Dizziness. Excessive sweating. Changes in appetite. Weight gain. Weight loss. Changes in vision. Excessive bruising. Thinning skin. Changes in sexual desire. Brittle or thinning hair. Muscle weakness. Tremors. Abdominal cramping. Mood swings. Depression. Loss of breast tissue. Severe fatigue. Decreased temperature regulation. Inability to be intimate. Inability to travel.

These are some examples of symptoms that simply 'come with the territory' of having a major illness.

With something like Ulcerative Colitis, the major symptoms that some patients are forced to focus on *may include* incontinence, urgency, severe pain and cramping, severe nausea, intestinal ulcers, blood loss, hair loss, weight loss, gas & bloating, malnourishment. Dealing with regular scopes, perhaps NG tubes to feed, constant visits to the hospital, fissures, fistulas, polyps. These are major. These require full focus and attention.
So that is where our focus goes.
We see this list and we have hope that we can somehow find a way to cope.
We look at the mountain.

What we don't see are the smaller issues that can ruin entire days.
Let's say we are able to make it to the washroom in time. (Score!) We remembered to bring a puke-bag in our purse or pocket and didn't have to vomit in public. (Double Score!) We are having a decent pain day, so we can actually manage to go to school or work or even see some friends (OMG YES!)
But then we notice that we have a bald spot.
Or maybe we have sweat through three shirts already in one day.
Or maybe none of our clothing fits and we didn't realize because we spent the last three days in the hospital.
So the day we finally get to DO something,  we experience saucer sweat stains, nothing fits, and we have to find a hat and try to hide the hair that is falling out.

It may not seem like much.
In the grand scheme of things, these are not considered severe issues.
But they can make or break someone's entire mood or experience. They can turn a strong human being into a puddle on the floor.

Here's the good news:
The Lighter Side of the little extras is that they can often be fixed, or at least concealed. When you have so many brutal issues to contend with, why not make life a little bit easier if you can? It may not always be a simple fix, but as long as you know the risks and discuss options with whichever professional is handling your care, why not allow yourself a break?
When we deal we such severe problems, we want to experience normal parts of life. Things like a healthy sex life, or being able to shower, or being able to brush our hair, or being able to wear normal clothing - these are all basics that severely ill people should be able to enjoy. These are the problems that feel utterly unfair when they occur.

So what do we do?

Losing hair? Indulge in a semi-professional wig. It may cost a bit, but why the hell not? We grin and bear so much, we should be able to make something as 'simple' as unexpected hair loss be a little bit easier to endure.

Have scars that really bother you? Why not go and discuss your options with a plastic surgeon? There is no harm in asking if they can be diminished, covered with a cool tattoo, or concealed with some new innovative (safe & approved) treatment.

Suffer from back spasms associated with arthritis? There are creams and physiotherapy exercises and even medications that can help with that.

Suffering from severe fatigue that prevents you from being able to stand up in a shower? Ask for funds to purchase a shower bench. Indulge in a spa-like bathtub. Turn a devastating problem into an opportunity to indulge - make baths this ultimate experience if you cannot shower. Take the negative out of it and turn it into this incredibly positive experience on the other side of the coin.

Remember that you do not have to simply grin and bear everything. You are allowed to make decisions and take 'shortcuts' to help you enjoy every day life. There is adaptive equipment out there for a variety of activities. There is NO SHAME in taking the easy route when it comes to this kind of situation. When you are fighting 24/7 for the rest of your life, give yourself a break!

I suffered from severely excessive sweating from a really young age. We were never sure of what it was related to - medication, illness, hormones, thyroid - but it was very clear that it was a permanent problem. So, after years of putting up with saucer sweat stains and sticking to a wardrobe of all-black loose clothing, when my Ulcerative Colitis was wreaking all sorts of extra havoc, I sought out a plastic surgeon and asked what he could do about my excessive sweating. I eventually decided to undergo an elective procedure to burn off the sweat glands under my arms. It was a relatively simple procedure, with a much more significant recovery period than I had expected, but it was one of the only symptoms I could actually have some power over. At the time I had already had two major abdominal surgeries (to remove my large intestine, deal with a temporary ileostomy bag, then the reconnection and J-Pouch). I had been diagnosed with Crohn's Disease after all of that, and was facing a heart condition, a potential kidney issue, and a thyroid issue at the time. All I thought was that if I could make this ONE portion of my experience a little bit better, I am going to do so. Lucky for me, it worked wonders! 10 years later, I still have almost no symptoms of excessive sweating, at least not under my arms.

I have been having major issues with mobility related to my Ankylosing Spondylitis. I do everything I can to maintain flexibility, strength, and continue to be active. However, I cannot walk more than a certain distance. I love to enjoy things like fairs, spectator sport events, concerts, and farmer's markets, but it is detrimental to my health to attempt such large venues - so I use a wheelchair part-time. It saves my energy and fatigue and allows me to enjoy life. It does not mean that I have given up or that I am not active, it means I am giving myself a break; I am allowing myself the opportunity to enjoy parts of life I otherwise could not, by taking a type of 'shortcut'.

I know that, for me, I try not to complain to my physicians very often about the 'smaller' or 'expected' symptoms, because many of them cannot be helped. But if there are issues that can be improved, why not at least look into it?

I am happy to say that, with some discussion and some risks, some of my 'litte extras' have been improved. Anything to make life just a little bit easier.

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.

Marketplace - Food Sensitivities and Teatoxes

Every once in a while we catch an episode of Marketplace.
I love this show - at least the episodes that I have watched.
It debunks myths, addresses contradictory statements, misleading advertising and labeling, and tries to out misleading and even harmful health scams and products.

The episode we watched tonight was about food sensitivity testing, the dangers of having a smart-home, and the dangers of tea-toxes.

A while ago I actually wrote about the very issue of these 'slimming teas' and 'tea-toxes' in a blog post.
I loved that this marketplace episode directly addressed some of the issues that I had expressed. The episode talks about the dangers of using ingredients like senna leaf over a longer period of time, as well as the general notion that losing weight because of diarrhea brought about by a natural laxative is not the same as fat loss within the body. Chronic use can be likened to eating disorders and can even alter gut motility.

The other part of this episode was about food sensitivity testing.
Testing that costs a fortune, to test the level at which the body reacts negatively to hundreds of foods and substances.
This testing is usually recommended after initial assessments and the suggestion of a disorder or disease not well understood (or not recognized in Western Medicine) including leaky gut, general food sensitivity of course, candida, ibs, floating rib syndrome, fibromyalgia, endometriosis, chemical sensitivity, lyme disease. Let me be clear here - many of these illnesses are perfectly legitimate, with some torturous symptoms, but are all misunderstood, or not well understood at all. Above all, while some of these illnesses or syndromes have no recognition within the medical community or do not carry the weight of other diagnoses, I think it is vital to remember that the symptoms are not made up.
(It is too often that a patient will come in and let their doctor know they have been diagnosed with something not seen as a real disease, and suddenly the patient's credibility is lost. The patient is not the one who should lose credibility. Being desperate enough for symptom relief to cling onto random diagnoses is gullible, not misleading).
This food sensitivity testing gives us a sense of hope. That we are taking steps to finding out what might help us feel better.
And what we ingest for food has been linked to several diseases by way of triggers and adding to inflammation. So it is natural to attack the diet - with any disease. Foods are an easy target for companies touting supplements and products. We all eat.
But unless a food is directly linked to causing a disease or the worsening of a disease (like Celiac Disease or severe food allergies), it might be a dead end.
What I liked about this episode is that it revealed the inherent flaws in the testing. That these tests can prey upon people who are desperate to feel better, at any cost. Desperate for answers.
It also pointed out how sad it is to watch people remove various different foods from their diet (including healthy foods) unnecessarily.

What we choose to eat can be vital to our health. It has an effect on energy, strength, and general functionality of our systems. But products like 'tea-toxes' and 'detoxifying supplements', unnecessary testing, even IV bags full of 'nutrients' - sure they may help the odd individual, but often they are completely unnecessary. We have livers and kidneys and gall bladders and all sorts of other organs that have those specific jobs.
A special IV may 'work' because your body is being rapidly rehydrated. Dehydration is a major issue when it comes to many diseases - especially those that cause diarrhea and issues with eating and absorption.
Maybe a specific food is being suggested as a food sensitivity because everyone's system has a difficult time digesting that particular food.
Perhaps a tea-tox works to lose weight because it is a natural laxative and helps you lose water weight within your digestive tract - and losing water weight does reduce bloating. (Add on a special nutrient IV and you'll be feeling right as rain).

So do they work? Sure. In some cases - absolutely. But it's important to know exactly why they are working, and how you can achieve those same goals without spending hundreds of dollars.
Really want to tea-tox and lose bloat and a tiny bit of weight by having loads of diarrhea for a month? Instead of buying that horribly expensive brand, why not go for regular run-of-the-mill sleepy-time tea that contains senna leaf? Or just go for a laxative... works faster.
(That's sarcasm - please do not do that. It can be dangerous to your health).

There are so many illnesses and syndromes and symptoms that are not well understood. There are lists and LISTS of symptoms and diseases that have no known cause or cure. There are millions of people suffering from diseases we do not yet fully understand - with no known cause, no known cure, but a fully known and understood prognosis.
It is important to remember that symptoms that people are complaining about are real symptoms. Keep advocating for yourself and for your friends who might be falling into these traps set for people who are suffering and desperate for someone to help them.

And speaking from someone who has always been desperate to find a name for a specific group of symptoms; for a diagnosis....

the diagnosis is only beneficial if it's the RIGHT diagnosis.

Otherwise you might be signing up for years of expensive treatments and diets and IVs and appointments that won't actually do anything to help or slow the true disease lurking there - undiagnosed and untreated.

Disease Adaptation

I think we often forget that illness is a living thing.
We are seeing this mostly in the area of bacterial infections. We find a way to eradicate something, and then it adapts, changes, comes up with a new approach to get past our old systems.
Just like rodents and infestations - sure you can get rid of them once, twice, maybe even three times the same way, but at some point they might return and you will have to come up with a new way to keep them out.

Chronic illnesses are lifetime illnesses, but that doesn't mean that they stay the same. Just like any other 'infection', they change over time, they can affect different areas and cause varying symptoms. If we can deal with one symptom, another one might just pop up.
This is a relationship that we must learn to compromise with.
Have you ever been able to completely rid yourself of one aspect of a disease, only for another to show up later?

I am not sure how much of this is just speculation or if there is any truth to it - but this is often how I feel about my own body:
I feel like there is an army of inflammation and autoimmunity that is ALWAYS attacking. If I fight them off in one area, they simply move to a different part of the body. If my system is inherently damaged and my own cells are, in fact, turning against me, then unless my entire system is reset, there will always be cells that attack their own kind. (Those traitorous bastards).
Because I am constantly trying to fight off all of the 'active duty' inflammatory cells in my gut, sometimes they send off parts of their army to other areas - so that I have to devote attention to another area. If I am fighting the inflammation in my SI joints for instance, then more inflammatory cells can invade my intestines quietly while my SI joints are being actively attacked. Or if I am focused on the inflammation in my intestines, they have an opportunity to make a surprise attack in my eyes. Then, once my attention moves to my eyes, they decide to move on to my pancreas. Then, once my pancreas is free of inflammation, time for them to move to my blood. Or to my kidneys. Or to my bladder. Or to my skin. Or maybe my throat. Or perhaps my heart. Or why not invade my HEAD so that all that I can possibly experience is pain.

Inflammation adapts - just like any chronic infestation. It almost feels like if I fight too hard, then I wind up with some additional inflammatory illness. They go to a new spot and multiply so that now I am consistently dealing with inflammation in several places.
BUT - if I can just get to a point that is manageable but not quite remission, then there is no spreading, no multiplying, no new trenches being set up in other organs - it remains in a constant state of inflammation but is more predictable. Those inflammatory cells have just built themselves homes and are just existing - coexisting - inside whatever organ they have chosen to inhabit... and if I shake things up they will fight back. But if I just let them live wherever they are, maybe they will settle down on their own and stop attacking so much!

That is often how I feel.
Wars being waged in my system - with rogue inflammatory cells always trying to find new areas to conquer, while others are consistently bothersome but not savagely attacking me every minute.

No Zofran for 2 Weeks

I swear this happens every single time!

I alternate between three antibiotics at all times. It helps my Chronic Pouchitis (the chronic inflammation of the internal J-Pouch created after my large intestine was removed), as well as the constant severe staph infections I develop on my skin. It also helps take care of other common infections I get because of being immunocompromised and a few other things.

On one of these antibiotics, I have to sit up for 30 minutes afterwards and cannot have dairy, otherwise it can cause stomach or esophageal ulcerations/esophagitis (which I have experienced before and it is terrible).

On another one, the pill itself dissolves instantly and the taste makes me gag and sometimes dry heave. It is disgusting, but it works.

On the one I am currently taking, it has an adverse interaction with Zofran (my INCREDIBLE anti-nauseate). When taken together, it can result in arrhythmia and an even faster heart rate - and since I already have tachycardia, when this happened to me, my heartrate was at 150 resting. INSANE.
So... usually after the first day I always find that I feel absolutely awful. I feel like I am gonna puke with each step I take, and I always forget why. Then a little lightbulb pops up and I remember that I have not been allowed to take my Zofran.

So I took some extra Gravol... which made my stomach settle a bit but made me feel so terribly loopy I could barely hold a conversation.

Always juggling.
I am grateful for every one of these medications because they have made significant improvements in my day-to-day experiences, but it is amazing how quickly you can forget how bad things used to be. One day on Cipro and I remember what it was like to be on the verge of vomiting every second of the day.

Balancing the Optimism

I think one of the most important things about being someone who is ill is finding a certain balance - especially in order to bring awareness to rare diseases, or illnesses that are virtually unknown.
This balance is tough to find and even tougher to keep.

Firstly - we have to keep reminding ourselves that our pain is real, our suffering is legitimate, and that we are justified, in every way, to have feelings of doubt and despair and resentment and simple frustration for having to endure it. That vocalizing our discontent and allowing ourselves to complain and to vent is VITAL for our ability to move forward.

Secondly - we must not remain in that gloomy disposition. Allowing ourselves to feel every emotion and dissatisfaction with our situation is normal (and even encouraged), but we can't stay that way. We have to remind ourselves that things could always be worse and that we have a million things to fight for and to appreciate. That we are not destitute, we are not without hope, we are not without some kind of happiness - because we are alive. This could very well be the most difficult. How easy would it be to simply relent and give up to that self-loathing that comes with illness? How much do we desire an easier path - one without fighting and without that consistent voice in our heads encouraging us to be more productive? How much do we long for those comfortable clothes surrounded by teddy bears and a fort of comforters to keep us from facing up to the every day challenges of suffering with incurable pain?

Finding this balance - finding that sweet spot of being believed and having our fears and pain acknowledged without falling into such a Depression that it takes over every aspect of our life -> THIS is how to cope.
And the situation is in a perpetual state of change, which makes it all the more difficult to control. It is like using a leveler on a moving ship through a storm. You have to keep focus and try to hold it still and level as the waves rage around you. The more you fall one way or the other, the less stability you have to get through the storm.

Level.
Balance.