13 August 2014

The Roller Coaster of Chronic Illness

Content warning: Discussion of chronic digestive problems, medical terms, bodily functions, other matters re: chronic illness and awareness.

The easiest way for me to cope with things is to write about them. The following won't be particularly well-written, but I can't care about that right now.

I didn't get back until about 1am from the ER, and I've been sleeping off and on ever since. They didn't admit me, but they ran a lot of tests, including a throat scope thing, and observed me. The latest diagnosis: I have bile reflux gastritis. It happens in rare cases to people who've had gallbladder surgery. Eventually I might have to have corrective surgery, or my chances of stomach cancer are higher. My liver is overactive, and what helps alleviate symptoms somewhat is a low fat diet with lots of probiotics, so we'll see. It's a chronic illness, so all I can do is try to manage it. Even with the low fat diet, my stomach will still have bile in it. My colon will still have bile in it. It's just a matter of dealing with less bile and having things flow as they should, or a little better, anyway.

I've been trying to manage these symptoms ever since 2005, post-surgery, when they were much worse. My flare-up this month has been the worst since 2011, when I had a C. Diff infection. I have been to many specialists, trying to find answers. First, it was diagnosed as a protein malabsorption problem. Then Irritable Bowel Syndrome. Then it was Colitis. Then it was simply lactose intolerance. Two colonoscopies later, and it was, "You have an elongated colon," even though I didn't have gastrointestinal problems until my botched gallbladder surgery. My chronic illness is not organic, and even though that's something I've always known, it helps to finally, finally have some tests to prove it. I'm still not 100% sold on the new diagnosis, even though everything seems to "fit," but that's only because I've been told everything under the sun for a long time and have developed a sort of skepticism about my medical journey, as it were. Dr. House does not exist, I'm certain; even though I respect those in the medical profession, sometimes I'm not sure how much they understand their patients and their needs.

For instance, in many, many cases, removing the gallbladder is fine for the patient. In my own case, however, things went wrong, and I have a nine-inch scar and thousands of dollars of medical debt to prove it. Through this journey, going from doctor to doctor, specialist to specialist, I've lost friends and loved ones who did not want to stick around. It was too much for them. And to anyone who says that this sort of behavior is inhumane, I've learned to interpret it differently. For instance, statistically, many marriages end in divorce once one partner falls very ill. At first, being supportive is manageable, but then it becomes too much of a burden to handle. Sometimes, it affects the "healthy" partner's ability to take care of themselves; their time and energy is constantly consumed by taking care of their ailing loved one. As someone who is the "ailing loved one," the last thing I want is for those I care about to neglect themselves in order to take care of me. But it's happened, and some of those people are gone from my life now, or they occupy a different role. I used to be angry about it. Now, even though I'm frustrated by my illness and how others react to it, I do finally get it. It's like being on a roller coaster for too long.

The roller coaster ride ends up being too much for some to handle, and they want off. I understand that now. But the thing is, I have to remain on that roller coaster. I don't have the liberating option of asking to get off. I want off so badly. I want it to stop, so that I can leave and "go home." But coming to terms with chronic illness means that, sometimes, you have to accept that the roller coaster is home now. Certain choices are eliminated once you have a chronic illness (or two or three). There are folks who are able to stick by their loved one through it all, with grace and patience, but not everybody is able to. And not all of those people who leave are like John Edwards; not all of them are, for lack of a better term, douchebags. Some are, though; I'm not gonna lie. I've had assholes in my life who decided their "funny friend" wasn't entertaining anymore, and they left when things got difficult. And then, there are people who at first think of chronic illness as a battle that is always winnable, always short-term, and once they realize that it's an on-going, bumpy ride instead, they get off when the bumps become intolerable.

But here I am, nine years later, and I'm still enduring those bumps. It's about survival and taking it one day at a time. Through it all, I have often felt as though my body hates me. This summer alone, I've had to deal with multiple health concerns. It gets to be exhausting, which is also probably why I've been fatigued and in bed a lot. I was diagnosed with a degenerative disc, for which I had been, up until recently, going to physical therapy three times a week. My insurance stopped covering it, so I'm left with trying exercises at home. Later in the summer, I was also diagnosed with an ovarian cyst. Thankfully, it is very small and treatable with birth control pills, so I'm not feeling as crampy as before. But my doctor had originally hypothesized that I had a tumor, which caused me to feel anxious for a few weeks leading up to the ultrasound to confirm or deny her guess. Thankfully, it's a cyst. I'm able to manage it, along with all of my other health concerns, with medicine, vitamins, and therapy (both the psychological and physical kind).

This leads me to another discovery I've made through all of these ups and downs: It's OK for me to be exhausted, and for me to say so and take time out for self-care. I've found Christine Miserandino's Spoon Theory to be especially helpful as I try to cope with these issues daily. If for any psychological or physical reason I'm just not up for arguing or conversing or anything else I don't have the energy for, it makes sense for me to pause or even stop what I'm doing. And I can forgive myself for it, too. For instance, I'm often the listener or shoulder to cry on in my relationships with others. It's OK for me to erect a temporary boundary sometimes when I don't have the emotional fortitude to be the support that someone else needs. As Miserandino might say, "I don't have enough spoons to handle that particular hurdle today," and that's perfectly OK.

Ultimately, there are facts about me that I'm still trying to internalize in ways that aren't harmful to my self-esteem. I do love myself more and frankly have less tolerance for bullshit than I did nine years ago. I have clinical depression. I have social anxiety. I have a degenerative disc. I have bile reflux. It's strange for me to be simultaneously resistant and embracing of labels, particularly when they're "new," like the bile reflux diagnosis. But with these diagnoses come, hopefully, awareness and education. I'm feeling better about myself and who I am. Through all of that, I hope there's compassion from others in the mix as well.

When you discover that someone you care about is dealing with chronic health concerns, don't automatically assume that it's temporary and that a simple "get well soon" will do the trick. Understand that often, there are good days and bad, and even on the good days, someone with a chronic illness may still not be "well." I appreciate the well-wishes -- all of them -- because the intentions are good and I can use all of the love and support I can get. But it's frustrating when I have to explain myself over and over that I'm not well, in response to statements like, "Well, you look fine." Don't assume that how someone looks is a good indicator of how they feel. In fact, don't assume anything. Just be understanding. Offer comfort and a smile. The majority of the time, that's all that I need. I actually don't want anyone to take care of me, other than doctors or nurses or, well, me. I just want to be seen and respected.

And that's the main reason for this post: I no longer talk about these trials very often in fear of alienating those I care about, but after returning from the hospital this last time, I feel as though it's better for me to be transparent about it all. I'm not some sort of spokesperson for chronic illnesses. That isn't my aim. I'm just one person, with one complicated story, hoping that my sharing does some good.


02 August 2014

Rest My Head

August always brings those black eyes,
those little hearts,
and I can't stop her.
She makes paper dolls but leaves them naked.
They have no faces.

When I was small, I dreaded autumn.
The bullies, dressed
in doubt and sweat, spoke
sweetly before
using their licorice fingers
to strangle me.
And August would say nothing,
just stand there timidly.

At home I would
iron-out the curls,
the temptations.
I would resolve
to do better.
But the windows are rolled-up
in this hot car, and I rest
my head on the steering wheel.

Meanwhile, August weaves her fingers
in and out of reality,
wisps of thought
in moist heartbreak,
and I am falling asleep
in the nest she creates.