Not Cool, Man... Not Cool

It is 2:42 a.m. I am awake because there is something wrong with my butt. I know exactly what is wrong; however, I do not yet know the extent. The problem—and I CAN'T BELIEVE I'm telling you this—is that I have a cyst.

I happen to sit down a lot. I sit down a lot because I'm tired a lot because I've had a whole boatload of other health problems. I spend a ridiculous amount of time on the computer, and that requires sitting down a lot. I sit in these weird smushed up, twisted up positions, which apparently isn't good for the skin back/down there. From all I can figure, I have traumatized the skin, which has led to the current situation. I also have a very shapely booty. Apparently, shapely booty-ism can be a contributing factor.

I am mortified. 

Also, I feel kind of crappy. Today was the third day of waking up feeling pukey and self-medicating with Pepto and Protonics. I think I might have a bit of a fever. My back hurts, and it's been hurting for so long that I can't remember it not hurting. At least some of my back pain originates from the fact that my L4 and L5 vertebrae are off kilter. Last month, I turned to a chiropractor out of sheer desperation when I could no longer put on my underwear without propping up against either the bed or the dresser and groaning onerously. The chiropractor has helped some, though I admit that I am always skeptical of the practice and that my ten minute appointments, marked by loudly banging drop tables and gentle prodding, often feel like eating rice cakes—unsatisfying. However, the pain in my back is a dull ache that spreads into my buttocks. I have convinced myself that my cyst has grown to epic proportions, and when I go to the doctor, he or she will tell me that I need to have the majority of my butt removed, which is what seems to be the classic treatment according to The Internet. 

That's the problem with The Internet. The Internet provides information, yet typically does not put that information into context and typically exudes an alarmist nature. If we all believed what we read on The Internet, we would all be about to die of some absolutely horrible disease. Forum contributors share horror stories on what seems like a 9 to 1 ratio, which makes sense in regards to human nature—because few ever feel compelled to write, "I had this thing. It was treated. No big deal. Now I'm fine." Instead there are postings replete with failures to administer adequate pain medication, slow healing, terrifying side effects, and sometimes even pictures of profound disfigurement. I know. I've been reading these posts for the past three hours—and that's just in relation to the current medical situation at hand. 

I've spent enumerable hours reading about my other conditions including stroke, brain aneurysm, fibromuscular dysplasia, and gastric rupture. I read and research not because I am a hypochondriac—I've got enough stuff that's actually wrong to worry about what "might" be wrong. I read and research because I am a person who functions better when I have lots of information. I like to understand the history of a disease, it's epidemiology, it's treatments. Understanding diseases from a scientific perspective helps me get a handle on them from an emotional perspective. The human body is a truly fascinating thing, and if patients can get beyond the fact that fascinating (and sometimes terrifying) things are happening to their own body, then an illness is a wonderful chance to engage the brain and learn something new. Since being diagnosed with intimal fibromuscular dysplasia and tested for overlapping connective tissue disorders, I have become very interested in the endothelial cell. Knowing more about the endothelial cell probably will never help me unless I'm on Jeopardy, but it helps me help myself. Science takes away feelings of having bad luck. Science explains disease processes for exactly what they biologically and chemically are. 

One need not be interested in science in order to seek out scientific information about disease. One need only be curious. Research has shown that patients turn to The Internet when they are sick; however, I am continually surprised by the number of patients with whom I interact who have not done any research at all. These such patients befuddle me. I do not understand them. I do not understand how they can so blindly and blithely go to see their doctors and fail to engage in their own healthcare. Nevertheless, an internet search of any given disease can and will turn up a plethora of information that ranges from extremely detailed medical research to full-on quackery. It can be difficult for patients who are not researchers by nature to differentiate what is real, sound medical information from that coming from Aunt Sally Jo's House of Cards and Ill-Advised Shams. Real medical information can be daunting. It's a bitch to read. Most of the words are terminology only used within the profession. However, patients can still learn from reading medical information, particularly if they take the time to look up terms and exercise their critical thinking skills. A good place to start one's journey into personal medical research is at healthfinder.gov, which includes an encyclopedia, free health tools, and more. Beyond that, patients should look toward sites that end with .org, .edu, or .gov. There are, of course, reputable sites with .com or .net endings; however, the big players at the medical table typically will be found in the .org, .edu, and .gov communities. Use some common sense. If one fears he or she has rabies and one finds a site recommending drinking three gallons of buttermilk and rubbing his or her skin with salt, one would do well to think that the deadly viral infection could use more aggressive and scientifically-based treatment. Homeopathic and alternative treatments absolutely have a role in medical care. I am a fan of aromatherapy—peppermint for nausea, lavender for stress—and have had great results with acupuncture. I turn to chamomile tea before I reach for chemical sleeping aids. I've found yoga and massage to help relieve muscle pain. But if I break my arm, I'm not about to go chew some tree bark and forget about it. 

My discovery of a small pit in my sacrum occurred a few weeks ago; however, I dismissed it as some sort of run-of-the-mill boo boo. The second time it made itself known, I had my duty-bound husband investigate the area. He found nothing much cause for alarm. This evening, discomfort led to another investigation, and carefully chosen Google terms quickly led to the cyst's diagnosis. It seems that the area needs to be incised at the very least, and at the worse... well, I'm not going to talk about the worst. The beauty of The Internet is that it is available 24/7, so my restless mind was able to pour over several sites' worth of information, including one truly wonderful patient driven site, consequently working itself in a real lather. Thankfully, 2:30 a.m. on the East Coast is only 10:30 p.m on the West Coast, and one of my doctor friends on Twitter was still awake and able to provide a bit of advice—go to a doctor but not urgent care; instead I need a surgeon. I am decidedly not thrilled about this entire scenario, but to find someone knowledgeable, who actually has had the same problem before, to provide a bit of comfort at 2:30 a.m. is wonderful. That's another bit of beauty about The Internet—it and everyone on it is there for you when there's something wrong with your butt.

Give What You Get

"If you're going to leave me, I'd rather you go ahead and do it now."

I was 24 when I told my then-boyfriend these words. Altogether, we had been a couple for nearly six years, having met through mutual friends, spent our college years together, then, after my graduation and subsequent move for a job five hours away, entered a year attempting a long-distance relationship that crumbled. There was a year apart. I moved for a different job, somehow managing to be five hours away from the old job and still five hours away from the guy. Nonetheless, we found ourselves back together in May 2004. We tried to overcome our past, but the fact of the matter was that while we had both changed, we had trouble recognizing that in each other, so it was no great surprise that by winter we were both looking for an easy way out. And then I got sick.

Really, I'd been sick for years, but things had finally come to a head when an incident at work convinced me that I had to get my high blood pressure under control. I'd been having several unilateral headaches on my left side, which I dismissed as stress and heredity. While at my computer one such headache suddenly turned into a dizziness and a numb left arm. The feeling passed, but it got my attention—if I didn't do something about my blood pressure, which had peaked at 220/110 and tended to hover around 190/105, I was going to have a stroke. Since I had recently graduated and moved and then moved again, I confess that I hadn't been as on top of my blood pressure as I should have been. My doctor at student health had taken me off a few meds and put me on a few others to no avail. A doctor I saw while working the out-of-state job did the same. My blood pressure didn't budge. So when I showed up in my new family practicioner's office he recommended something else, "There's something really strange I'd like to have you tested for." I went for an MRI and the strange thing was found—the artery to my left kidney was more than 90 percent stenosed, which meant that the kidney was not getting an adequate blood supply and therefore was emitting renin to raise my blood pressure to try to force blood to the little dying organ. What the MRI also found was that my celiac and mesenteric arteries were 100 percent occluded. We didn't know why, but suddenly the severe gastrointestinal problems I'd had for years on end suddenly came sharply into focus. The arterial blockages were killing my system, and if blood supply wasn't restored, I stood a great chance of a) losing my kidney b) suffering complications from high blood pressure including a weakened heart c) losing my bowel. I was referred and then referred again. There was talk of a vascular disease. There was talk of major surgery.

And finally, there was talk of breaking up. I knew two things: I needed to pay attention to myself and not a shoddy relationship, and if I was going to get out of a shoddy relationship, I wanted to do it before things go ugly, before things got to the surgery and recovery and scars part. It was shortly before Christmas that I said, "If you're going to leave me, I'd rather you go ahead and do it now." And so he did. My parents went to my doctors appointments with me. I spent most evenings at their house, only driving home at 11 p.m. to feed the cats and go to sleep. Bypass surgery was put on the docket for July 5.

I hadn't really had much of a mind for dating. My situation was serious, not the kind of thing to throw at a new relationship, but there was a guy, a friend at work, to whom I had become close. We hung out from time to time, going on "not dates." He had never ever tried to make a move on me. I never made a move on him. Instead, we were just friends—blushing, awkward friends. The night before I was to leave for surgery, I was nervous and alone. I called my "just friend." "Talk to me," I said. "I don't care what you talk about, just talk to me." Three or four hours in to the conversation, I couldn't take it any more. "Travis, why don't you ever hit on me?" There was a long pause. "Well, I will if you want me to," he replied.

Travis came to see me in the hospital, which was three hours away. The surgery had been eight hours long, and afterward, I spent a foggy two, maybe three, days in the ICU. When I finally got to a regular room on the vascular floor, I hadn't eaten in days, hadn't had solid foods in a week, was unshowered, unshaven, and generally looked like a meat marionette held up by IV lines. I think he got to stay for 45 minutes before my meds made me sick and I threw him out of the room.

After two weeks in the hospital, I headed back homeward, but was too weak to live alone. I stayed with my parents for nearly a month. In that time, Travis and I resumed our hours long phone conversations. He came over to my parents' house and took me out for dinner and a movie. And still, he was perfectly, annoyingly polite. Without going into great detail, I'll say that on Aug. 13 I took matters into my own hands. The relationship was everything I'd never had before. We were married just over a year later on Oct. 20, 2006—this month we celebrate our five year anniversary.

In that five year span, Travis and I have gone through a lot with my health. There was the stroke, and the nephrectomy, and the four brain aneurysms, and the gastric rupture. We've gone through a lot in life. I made him let me get a dog (in addition to our three cats), we sold my townhouse and bought a bigger house, I lost my job after the stroke, I went back to school, I started working again part-time. Throughout it all, he's been stoic. He's been by my side. He's sponge bathed and cut up food when the IV in my hand won't let me and changed bedsheets and packed wounds with gauze and driven me to appointments and filled prescriptions and brought chocolates and held me while I cry and nagged me to do my physical therapy and has never once showed any signs of leaving. I don't know how he does it. Sometimes, I don't know why he does it. It would be so much easier for him not to. It would be so much easier for him to close off and close up and want nothing to do with me and my sickness. I try to give him as much as he gives me, but I know that that is impossible.

A lesson that sickness has to teach us then is that in sickness we must not always focus on that which we lose; we must look to what we gain as well. I gained a husband who is my joy, my solace, my caregiver, and my love. I also have gained a community in which fellow patients serve as caregivers, supporters, and friends. I have gained insight into myself, what I want to accomplish in life, and what is truly important and worth fighting for. I have gained experience and knowledge. When there is so very much to be lost and so very much that has already been lost, searching for what one has gained may prove difficult, but it is what we gain that fuels the fire to carry on.

Terrible Twos-day: Interactions Edition

I spent part of this evening sitting in on a TwitterChat with a few doctors discussing alternative therapies and how patients choose to integrate them with "traditional" medicine. It was a good talk, and perhaps the biggest lesson taken away is this—TELL YOUR DOCTORS EVERYTHING YOU TAKE AND ALL ALTERNATIVE THERAPIES YOU ARE USING. Tell them not because they are nosy or think you're a bad patient or want to tell you to stop taking what you're taking or doing what you're doing but because they do indeed have medical degrees and may very well be more abreast of potential interactions than you.

How many patients really read and memorize those little leaflets the pharmacy hands out? (Yes, I know you did read that one, once, you swear...) Those leaflets have good information in them, but the print is tiny and we're busy. Maybe you read the leaflet the very first time you got the prescription. Maybe you had some time to kill over a bowl of cereal and the newspaper was in another room and so you read the leaflet. Did you understand every word in the leaflet? Did you make notes regarding things to ask your doctor about next time you meet? Did you see a caution not to take your medicine at certain times and with certain foods or supplements and make a concerted effort to make sure you were doing everything right? Probably not.

That's okay—sort of. As patients we should all take greater responsibility for our own healthcare and be more involved. Doctors can do wonderful things, but they're still human. They're not psychic. They need information from you. You need to be able to tell them about things that impact your healthcare—supplements and alternative therapies included, heck, supplements and alternative therapies especially included. Such things aren't prescribed and therefore often are not in the record system. Take St. John's Wort because you feel a bit down and are too embarrassed to talk to your doctor about it? Don't be. Your doctor needs to know. Have severe back pain that responds to massage? Your doctor needs to know, and at home exercises to limber up are cheaper than pills. Want to know more about Vitamins B and D? Ask your doctor not just about what they do but about how taking them would work with your other meds.

Doctors are tasked with moving through a full-roster of patients each day. With an aging population and people who refuse to do their part in taking care of their own bodies, doctors have an ever increasing load. Help them help you. Be prepared for your appointments. Communicate as clearly as possible. And if you're not getting the attention and answers you need, don't be afraid to say the following—Doctor, this is an important issue to me, and I would appreciate it if you would help me address my concerns; I am really depending on your help to figure out what's right for me.

And finally—make sure that when you're doing online research that rely on credible information. Jo-Jo's House of Medicine or Herbal Solutions "Backwards R" Us probably aren't the best place to go. That said, help educate yourself with the information contained in these links.

National Center for Complementary and Alternative Medicine
The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government's lead agency for scientific research on complementary and alternative medicine (CAM). The mission of NCCAM is to define, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine interventions and their roles in improving health and health care.

The University of Texas MD Anderson Cancer Center
The MD Anderson Cancer Center Complementary/Integrative Medicine Education Resources (CIMER) Web site is dedicated to providing educational resources to health care professionals and patients regarding the current understanding of complementary medicine and, where appropriate, to assist in the integration of these medicines and therapies with conventional treatments.