I’m changing tracks a bit today. Normally I always talk about my back and neck pain — which is natural, given that those are the two biggest health-related conditions I have. They make it easy to forget that I have a third health issue, also quite large, that impacts my life on a daily basis.
I have eosinophilic esophagitis (EE), an autoimmune disease. Here is the Mayo Clinic‘s definition:
In eosinophilic esophagitis (e-o-sin-o-FILL-ik uh-sof-uh-JIE-tis), a type of white blood cell (eosinophil) builds up in the lining of the tube that connects your mouth to your stomach (esophagus). This buildup, which is a reaction to foods, allergens or acid reflux, can inflame or injure the esophageal tissue. Damaged esophageal tissue can lead to difficulty swallowing or cause food to get caught when you swallow.
For me, EE presents as food allergies. I’ve been dealing with food issues since 2007, but I didn’t receive a formal diagnosis until 2011. Everyone just thought I was compulsively bulimic. I’d eat something suspect, I’d feel my throat get prickly and swollen — not like true anaphylaxis — and I’d have to purge the food to feel better.
Photo credit: via Pixabay.com
Getting that diagnosis in 2011 made a whole world of sense, and it was almost gratifying. I was right. Something had been wrong. I’d progressively cut out food groups to see what the trouble was: wheat, gluten, dairy, soy, eggs, peanuts, nuts, fish, shellfish, alcohol, red meat. At one point I was entirely on liquid medical food. Now I’m only restricted to wheat, gluten, dairy, peanuts, and fish. Much more manageable.
But all of my physical problems are overwhelming to a normal person. My best friend from childhood once said, “Can’t we just trade your body in? Get you a new one?” Like, there’s so much wrong with you. We’ll start from scratch.
Photo credit: via Visualhunt.com
Let’s explain it this way: Chronic pain patients can look like hypochondriacs. Our lists of ailments often look ridiculously long. For instance, I have chronic back and neck pain, eosinophilic esophagitis, dysphagia, cervicogenic headaches, sciatica, GI tract inflammation, and a hiatal hernia. Other chronic illness patients usually have a laundry list of symptoms and conditions. Why is that? Are we more familiar with our bodies? Do the constant doctors’ appointments reveal a lot more of what’s wrong versus a person who only visits the doctor twice a year?
Yes and no. For instance, sometimes I worry about getting cancer — like, I’ve already dealt with all of this shit, what happens if I have to deal with something worse — and my pain counselor, Linda, immediately said, “Think about it. You’re a frequent flier in the medical system. If you somehow do get cancer, they’ll find it super early.”
Which is true. My point, however, is that it’s a combination of factors. Yes, we are far more familiar with what “feels normal” in our bodies, even pain, and what is unnatural. Sometimes, though, the treatment for our conditions leads to secondary issues. These secondary problems are considered the lesser of two evils: Do you want to treat the pain, or do you want to suffer? If you treat the pain, these side effects might occur. The benefits supposedly outweigh any potential harm.
Here’s a prime example. Since my surgery, I have been on a hybrid eosinophilic esophagitis/GERD diet because I can’t handle most food without hawking it back up like a mama bird. On top of my normal restrictions, now I also have to avoid coffee (no!), chocolate (NO!), fried food (NOOOOOOO!), and other irritants. I can feel the hardware in my throat every time I swallow, and my esophagus has been greatly narrowed, as we discovered when I did that barium swallow. For my EE, I take Prilosec and Zyrtec. Long-term use of Prilosec can weaken your bones. As such, I need to take additional supplements (calcium, K2, D3, B12) to offset the effects of the Prilosec. My chronic pain means I take a lot of heavy-duty pain pills, which inflame my gastrointestinal tract. Somehow I got a hernia right between my esophagus and my diaphragm, which caused cyclical vomiting — or the vomiting from not being able to eat properly caused the hernia. Sometimes I puke simply because I’m in a lot of pain. It’s a “chicken before the egg” problem. Until I see my GI doc in a couple weeks, that will be a mystery. But since the problem isn’t resolving on its own, that’ll likely merit a small surgery.
Photo credit: via Visualhunt.com
My ultimate point here is that you can have one issue — pain — that spawns several other issues just because of the treatment involved. Long-term use of pain medication harms the GI tract. As the commercials tell us, pain medication also causes constipation (that’s a fun one I’ll let you think about on your own; side note, invest in these [click each word for a new hyperlink]), but it can also cause stomach problems, throat irritation, hernias, whatever. The list of health conditions grows longer, and the patient looks neurotic and insane. Who could possibly have that many issues? That person has to be making some of it up.
I don’t heal as fast as normal people (which prompted my primary to ask, “This bone density result from 2014 indicates you have osteopenia, has nobody really ever investigated this?” and so he scheduled another bone density test for Friday– stay tuned!). When I was a kid, I broke so many bones that my mother wondered if I was doing it for attention. I broke my wrist by whacking it against the metal bed frame while watching Jumanji, for God’s sake. (I got scared by the movie. Shut up.) Social Services was even called because the hospital thought I was being abused.
Side note: My parents are all kinds of awesome, and the only abuse I ever suffered at their hands was being served a salmon patty from Costco for dinner one night. We all ended up eating cereal.
Photo credit: via Visualhunt.com
Since I am quite frail, however, doctors sometimes can’t comprehend how unbalanced and rickety my daily state is. If I do one thing that stresses my body out, it takes a day or three of recovery. If my mid-back is unstable, it radiates to my neck and low-back. This makes sense to me. You can’t have a column with a weak core and expect the top and bottom to be strong. Trying to explain this to my doctors is futile. “But your neck is fused. It’s not going anywhere. It’s strong. It’s bionic.” Yes, but there are also muscles and ligaments, and those are as weak as a day-old baby right now. Hell, if I look down at the floor I end up with a headache that’s strong enough to put me in bed for the rest of the day.
It’s like that old song we had to sing in kindergarten. The foot bone is connected to the leg bone, blah blah blah. Everything in our bodies is connected. You never just have one problem; it’s a series of interconnected problems. You treat one, and you make another worse. You fix that secondary problem, and it presents a tertiary problem. It’s an ongoing series of things to deal with. That is why we chronic illness patients sometimes look flat-out bonkers. And that is why we have to treat the original problem and not the resulting symptoms. Only then can we expect to see any degree of permanent improvement.