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. 

Truly Invisible

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

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

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

But what about the truly invisible diseases? 

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

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

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

So how do we help? 

Some tips:

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

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

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

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

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