Slowing Down

One thing I used to say, and a phrase I hear often from many individuals with chronic illness, is "I don't let my illness slow me down". 

People say it because it brings a sense of determination and resilience, but it's not really realistic is it? 

I mean, we push and push and push, and maybe we don't let it steer us entirely away from our goals and aspirations, but no matter who you are, if you have active disease, it's bound to slow you down. 

Maybe with all of that pushing, it pushes you right into the ER when a flare-up becomes unmanageable. Or maybe you crash and have to take a week off from work, or even a day or two. In that sense, illness definitely slows us down, no matter how hard we fight against it. 

In truth, I have no more true control over my body than I do the weather. 

The disease is going to do its thing. Yes I can put mitigation measures in place, I can make educated predictions on future forecasting and give myself reasonable protections, but the disease is a pathological part of me that isn't fully understood, so how could I ever hope to achieve true control?

The other problematic side to the 'not letting it slow me down' coin is the inherent negative attribute: does that mean that I am a failure if I have let my disease slow me down? 

The answer is an emphatic NO. 

Slowing down due to illness is not a personality flaw or a failure in determination. Your resilience is not based on how you "allow" a disease to affect you (like you could control that anyways). Your resilience is based on facing each day knowing that your mere existence is painful. Your resilience is finding happiness regardless of the disease that is ravaging your body. 

Just the rebellious act of having and working towards goals as well as finding joy is, in truth, resilience and a quantifiable measure of success, in my opinion. 

I am successful, not because I 'didn't let my illness slow me down', but because I keep going despite the inevitability of being slowed down, having my direction changed, or even being roadblocked by illnesses that I cannot control. 

If you have chronic illness, sometimes just getting out of bed is an accomplishment worthy of applause. Never forget that. 

Head Pain

In July this summer, I woke up one morning with a brutal pain in my head on the right side. I thought it was maybe a migraine, but it didn't feel the same as my other migraines. The pain felt more superficial, and the pain also included other areas of my face, like my cheekbone, brow bone, and jaw. 

I tried multiple medications, massage therapy, ice/heat packs, kept the lights off and sound down, and nothing would touch it. I let it go on for nearly a week before I finally sought treatment at the hospital. 

They tried multiple treatments in the emergency room, and still nothing would touch the pain. So I was admitted to the neurology unit on a Sunday and was hospitalized until the following Saturday, having exhausted the treatments and scans that they could think of. I had a neurology team and a headache specialist team working on my case. 

There were multiple problems: 

1. My symptoms sounded like a migraine, but it didn't feel like a regular migraine, and I couldn't sufficiently describe what I was feeling or what made it feel different from my migraines

2. I couldn't take certain treatments due to allergies/intolerances or because of other conditions

3. The scans they were doing showed nothing

So once we knew nothing nefarious was going on (like strokes, or blood clots, or pressure in the eyes, or other severely emergent issues), I was discharged with an appointment with my neurologist and a referral to a special headache clinic. 

The following week I was put on Prednisone for a two-week course to see if that would help. Steroids generally cause severe migraines when I take them now, so we avoid them if we can, but we were all getting desperate. So I received nerve blocks to help prevent my regular migraines and crossed our fingers that this would do the trick. One more scan was also ordered - to check my TMJ - the jaw joint. One of the team members thought that I may have a TMJ disorder where the joint is misaligned. 

The Prednisone did its job - the pain has been greatly reduced, yet still there. 

Well, I received the results of the TMJ MRI. Turns out that I have bone degeneration and bone spurs on the top part of where my lower jaw meets my skull. 

It's possible that this is all caused from teeth grinding, even though the Botox has been helping to reduce/prevent that for years, and there was no evidence of active inflammation (although the MRI was done after the Prednisone treatment, so that could be coincidental). All of this to say that bone degeneration and bony spurs in my jaw, especially being aggravated, is the likely culprit of this severe head pain. 

I have my doubts that the only causal factor is teeth grinding, as my body seems to like collecting autoimmune disorders (and apparently, ones that cause random extra bone deterioration & bone formation), but I'm hoping that that's all it is. I already get Botox injections to help prevent teeth grinding, and I have an appointment to look into a mouthguard to use at night to help prevent (or slow) further damage. At least we know what's causing the bones in my face to hurt. 

As a point of interest: 

I have Ankylosing Spondylitis, which causes bone deterioration and then excess bone growth where it's not supposed to be, within the SI joints and the spine. 

I also have Otosclerosis, which is excess bone growth within the middle ear on the stapes bone. 

I have mandibular tori, which is extra bone growth within the mouth. 

And now I have bony spurs - extra bone growth where it's not supposed to be - in my jaw. 

Weird. 

Growing Up

I believe that one of the most profound elements of growing up is realizing just how ridiculous the beliefs and judgements were that we held as young people.  

I will gladly raise my hand and say that many things that I believed, said, and thought were idiotic, embarrassing, and potentially damaging. At times it even keeps me up at night, contemplating whether or not I may have done harm to others because of things I may have said. Especially as a teenager. It is encouraging, though, to be able to look back at some of the thoughts I had when I was younger and know that I no longer believe those things; to know that I have moved on and grown up. 

Now with all of that said, I assume that people I went to school with have also outgrown some of their own thoughts, but I occasionally wonder about particular individuals. 

I was 14 when I became very ill. 

At that time, several people (mostly classmates and even some of their parents), kept saying that it wasn't a big deal. It was minimized to an alarming degree. 

Now, some of those classmates have teenagers of their own, and it makes me wonder whether or not there has ever been a lightbulb moment of empathy or understanding that they just did not have the capacity to reach before. 

To see a 14 year old go through dozens of colonoscopies, hundreds of medical tests, be on severe medications like Prednisone, and just endure the symptoms that come with an illness like Ulcerative Colitis (later, Crohn's), might be tough to imagine. 

(I've still never understood how a father of a 17 year old could say to the parents of another 17 year old that the surgical removal of the large intestine and having an ileostomy bag was 'not that big of a deal'...And no, it was not done laparoscopically, not that that should have mattered). 

Most adults would be devastated to have to go on a medication like Prednisone for short stints, let alone longer terms, and the thought of even removing an appendix is a major surgery for most people. But I digress. 

So I wonder, now, whether or not those same classmates (and their parents) ever think about the beliefs they held, and whether or not they've outgrown them. And did they outgrow those beliefs before having children of their own, or did the epiphany come with raising teenagers and realizing how different life would be with a sick child? 

I hold out hope that we have all outgrown embarrassing beliefs, that we have all learned compassion and empathy along the way, and that we have grown into some understanding without the suffering. 

I know I will continue to outgrow beliefs and feelings and I will continue to learn as I go. I just hope to do little damage and to apply understanding as much as possible. Maybe we all get just a little bit better at empathy as we grow older.