Today I have feelings. I am reserving judgment on these feelings for now. I feel frustrated, and helpless, and agitated. I feel as though I am burning with energy to channel into positive things, but paralyzed in my inaction at the same time. I have fear of the unknown. “What if the things that I want to do take too much time? What if I fail? What if I sit in my anxiety so long that the opportunities pass me by, as I sit on my hands and wait for someone to tell me what I should do?” As I sat this morning, scrolling through Twitter and becoming a mixture of defeated and incensed, I decided that the best thing that I could do for myself is to write. Today, I am ever-hopeful for a stranger to tell me, “I’ve been there, and I know how to start. Let me share my experience with you!” Will that happen? Will it be you?
If you’ve read some of my previous posts, you know that I’ve recently had a few bumps in my road to being healthier. Today, I celebrate day 18 of being migraine free. Yesterday, in a follow up with my Gastroenterologist, I learned that I indeed DO NOT have colitis. I was confused, because he told me I had colitis, then had me do nightly enemas (as you may recall). So confused that, as soon as I got in the car after my appointment, I called Wave and asked him, “He told us that I had colitis, didn’t he?” Wave confirmed my memory, so all that is left is that I fought and argued and wasted so much of my time to try to get an affordable treatment for an ailment I didn’t even have. The doctor did not own this mistake. He acted like this was just normal to tell someone that they definitively have something, then act like you never said that.
He asked what my symptoms are, if any, and I told him that I have dull abdominal pain every day, peppered in with sharp pains that feel like lightening, and when it’s time to go to the bathroom, I have about 10 seconds to get there or all hell is breaking loose. He sat back, silent for a moment, grabbed a stapled set of papers from a stack, and handed me a packet describing a low-fodmap diet. It was clear from the size of the stack that this is a common handout. He looked again at the pictures from my colonoscopy, commented that I had some internal hemorrhoids that he didn’t think to mark during the procedure, and said that the inflammation I had was simply irritation and not infection. He pointed to the diet and said that obviously I am eating something that’s irritating.
I left the office much like I leave most doctor’s appointments. Irritated, agitated, and a general feeling of loss for the time and money that I’ve wasted. This is my second go round with a Gastroenterologist, and both experiences (twenty years apart from each other) have been similar. No answer but suggestions to reduce stress and cut even more foods out of my diet. That will be $1,500, please.
I have spent the last several years learning about food and food sensitivities, and streamlining my diet to try to manage the IBS that I was diagnosed with as a young adult, which has led me to veganism. In addition, there are several fruits, vegetable, and beans that I need to cut to see if these are my current problems via elimination diet. What makes me laugh a little is that a friend of mine showed up at my desk about a year ago with the exact same hand out. She has diverticulitis and colitis, though. I have nothing but IBS. I feel almost exactly the same as when I got the original diagnosis, which is, “I don’t really know what is wrong, here is a diet, do that, go away.”
To clarify, I don’t think that IBS is nothing. I have lived with it for as long as I can remember. It is painful. It is embarrassing. It can take over your life if you let it. It is frustrating. It is lonely. It is something that you have to champion for yourself. The pain can lead you down dangerous paths. What it has made me learn is that no one will fight for me better than me. It has taught me that I have the power to become my own healthcare manager. I have the ability to research, ask, relate, and try methods that a doctor might not ever recommend.
I also want to touch on the ever present ‘maybe you need to eliminate stress’ suggestion. This was the only suggestion that the first Gastroenterologist gave me. This and a prescription for an anti spasmodic as they were sweeping me out the door as quickly as possible. I am a rule follower, and a person in authority gave me a rule to ‘eliminate stress’ without any guidance. I did what any twenty year old would do. I took up drinking my cares away. Soon after, I took up smoking cigarettes, because then I could take breaks at work! After I figured out better ways of managing life, I learned how to eliminate stress through exercise, thoughtfulness, coping skills, and good planning. I am not a stressed person. I sleep well. I eat right. I exercise. I talk out my feelings. I don’t internalize stress. Yet still, physicians and others counsel me to stress less. To me, this is silly and generic advise that needs to just stop! It’s like saying that to lose weight all you have to do is take in less calories than you expend. FALSE! This is generic and misleading, and quite frankly, LAZY! Every single body is different. Every body is delicate and intricate in its inner workings. Everyone has different optimum hormone levels. Some bodies can stretch and bend and do yoga well. Some bodies have shorter muscles and tendons, which make it all but impossible to do yoga. Some people can put away an entire pizza and not gain an ounce. Some of us can look at a pizza and gain a pound. If you issue any of this advice, please stop. Join me and stop. It’s insulting. We are all individuals, and what works for me, may not work for you. Not everyone handles stressors in unhealthy ways. Not everyone is able to just drop 5 pounds in a week. Not everyone can go from couch to marathon with ease. So stop.
Ok, so back to my feelings. My stated goal for this year is to be a voice in affordable healthcare reform. I am feeling lost at the moment. It’s one thing to have a goal. It’s entirely another to figure out where to begin. I am frustrated with bad physicians. I am angry that I have paid so much money for an “I don’t know” diagnosis. I am flabbergasted that not only did I have to lie on a table in the most vulnerable position and listen to a man (who is not an anesthesiologist, but a nurse anesthetist (to correct my earlier post)) talk about pounding breasts and watching me like a stalker, but who is also going to be billing me for more than the facility and the doctor who performed the procedure COMBINED. I am appalled that I have the privilege and access to healthcare, and am able to pay my bills, while women who sit one department over can’t even afford to carry the low cost company health care policy because it’s either daycare or healthcare, but not both.
Where do I start? Tell me! PLEASE! Well, even if you’re not the person who is supposed to share your experience with me today, I know this, dear reader:
You’re probably NOT crazy (though sometimes, if you’re like me, you have your suspicions after meeting with doctors…)