I was reading old posts from the Houston Chronicle's Good Mom/Bad Mom blog featuring Jenny Lawson, the wonderfully deviant author of her own separate blog, The Bloggess (Like Mother Teresa, Only Better). Jenny's very first Good Mom/Bad Mom post was an introduction in which between the lines was a surprisingly honest account of herself. In short, she identifies herself as a mother, a wife to a husband who refuses to donate his organs for fear of needing them when he becomes a zombie, a Czech redneck, and one who suffers from anxiety and from time-to-time goes off her meds "just to see if I’m still crazy. Turns out? Yeah."
Although she doesn't know it, Jenny has become my new best friend. In similar form my biography would indicate that I am a mother to three cats and one dog, a wife to a husband who refuses to donate his organs because he's an asshat, a Czech redneck, one who suffers from anxiety and from time-to-time goes off her meds "just to see if I’m still crazy. Turns out? Yeah." It's like we were separated at birth, which makes more sense than having been separated at any other time since I've never actually met Jenny and so far our only correspondence has been me offering her a writing job and her turning it down in order to work on her book. I'm supposed to be working on my book right now too. Well, technically I gave myself a 2012 start date, so I guess I've still got a few months until I'm really procrastinating.
Several more posts in to the Good Mom/Bad Mom blog, I came across one of Jenny's roundups of recommended reading, which pointed me to the Cynical Nymph. Her bio reads that she is a New Yorker, a wife, an only child, a "kitteh mama," a Francophile, a Shakespeare geek, and "and a woman who has struggled with an eating disorder for the better part of ten years." WTH? Though a North Carolinian, I too am a wife, an only child, a "kitteh mama," a Francophile, a Shakespeare geek, and a woman who has struggled with depression for more than ten years. Nymph (who does not identify herself by name) also is my new best friend, although she doesn't know it.
Where have these women been? Why did I not know that other such women exist? Why can these women not live in my town and spend copious hours with me being snarky over coffee and/or drinks?
I don't like women, which is problematic because I am one. The vast majority of my 31 years has been spent thinking that women are silly and vapid. Perhaps it was a matter of age. As a youth, I tended to socialize and converse best with people much my elders. As a young woman, it was easier just to drink beer, eat chicken wings, and talk sports than to pretend to give a flip about fashion or my weight or babies. It's only been recently that I have begun to meet women my age who impress me with their wit, talent, and intelligence. I'm not sure if we've just all grown up, or if I'm somehow keeping better company, or if (fingers crossed) the really stupid women are too busy putting on mascara while driving and coming to their timely demise thus leaving the rest of us to congregate. It has been at once a relief and absolutely terrifying to find these women with whom I connect because I finally have friends that actually matter.
However, both Jenny and Nymph raise another matter that is near and dear to my heart—mental health. I was first diagnosed with depression as a freshman in college. All I knew was that I wasn't feeling well, hadn't been eating much, and had had an upset stomach for weeks. I went to student health between classes. They took one look at me and wouldn't let me leave. I had to call my professor to tell her that I was being held hostage and that the doctors wouldn't tell me why. They ushered me upstairs to a shrink. Honestly, I remember nothing of the conversation, but apparently if one looked up depression, my picture would have been next to the entry. It happened that my parents were in town to visit, and I was late meeting them. I didn't know how to tell them about my diagnosis. I felt ashamed, broken, insufficient. We went shopping, and I managed to get a few moments with them individually to break the news. It went better than I expected, but I don't think that at the time any of us grasped the situation's seriousness.
Over the next year I struggled with my mental and physical health, made some bad decisions, didn't do too well in classes, and came home for the summer beaten. It was a time for reflection, and I decided that I could wrangle my thoughts best off medication. I broke off a bad relationship, excommunicated several "friends," and finally went back to school in August with a better head on my shoulders. Amazingly, I made it through college without much else incident, but the depression came roaring back after graduation when I moved to South Carolina for my first job as a reporter. The job was H-E-L-L, I lived alone, and there was no time to do anything but work. When I began truly contemplating losing my job in favor of staying in bed curled into a tiny ball with my back against the wall, the covers over my head, the doors locked and the lights off, I figured it was time to see a therapist again—maybe. Other staff members at the newspaper recommended one in particular, but perhaps I should have taken it as a sign that I was in the wrong profession or at the wrong place when the local shrink offered our company a group discount. My first visit I spent talking to the therapist's dog and rubbing its ears incessantly. I quit that job on my birthday in 2003 and moved back to North Carolina to work at another newspaper.
Fast forward to 2005, I had tried both Zoloft (awful) and Paxil (better, but meh), but again gone off any meds because frankly its hard to be a writer and be medicated. There is something beautiful about being crazy. Misery breeds creativity, at least it always has for me. On meds, I felt muffled. Off meds, I was a wreck, but my writing was good. Bad health forced me to have triple bypass at age 25. An eight-hour surgery performed to save one's life is, to put it blandly, a life altering experience. To complicate matters, doctors thought I might have an incurable arterial disease. The surgery was so invasive (read: they literally cut me in half) that I was incapable of doing anything significant on my own for months. I was relatively okay with all of that. What I wasn't prepared for was that the surgery would work. For as long as I could remember I was unable to eat with any regularity due to decreased blood flow to my guts—the reason the bypass was needed. With the bypass, suddenly I felt good, I could eat, and I didn't know what in the hell to make of that. My body was not my own anymore. It was this strange thing with which I was completely unfamiliar. I was lost.
Through the grapevine, I heard of a local therapist who specialized in patients who had major heart surgery. I was overjoyed. Though my bypass was not coronary, I had little better chance of finding someone who understood the mental and emotional effects of my surgery. I drove for an hour each way to my appointments. We talked. It helped. The therapist told me about a new drug called Lexapro. I tried it. It has been my magic friend now for nearly five years. I love it because, for the most part, I do not know I'm taking it. For me, it does not produce the same side-effects as Zoloft or Paxil, which both seemed to lessen the highs and lows by making me feel nothing at all. There is a part of me that would still like to be off medication, but now I am a wife, and I feel it is part of my responsibility to not actively engage in behavior that makes me impossible to live with—i.e. not taking my meds. Sometimes I slip. Sometimes I fall off the bandwagon. Sometimes my husband finds me in a dark room, unshowered, surrounded by food debris, and sleeping. He tries his best. "Are you okay," he asks. He lets me lie to him. And he lets me cry on him.
The point is this—Jenny and Nymph both are writing about the darkness of their diseases, and here I have tried to do the same. These diseases, and others, need not live in darkness. It is through exposing them that we take away some of their power, through sharing that we find like souls, and through difficult, sometimes painful work that we begin to heal and make peace. Whether Jenny and Nymph ever know that I exist, I at least know that they do, and that helps me feel less alone.
no-named long-faced it
no-named long-faced it
lives in the woods,
olive green gnarled fists
crush song birds,
spear tiny breasts,
no-named long-faced it
laughs like bones clatter,
twisted legs and yellow eyes
sneak in tree shadows,
no-named long-faced it
claws window panes,
lolling red tongue
sticks with putrid saliva,
jiggles and turns,
no-named long-faced it
embrace her body,
no-named long-face it
stays with her,
doorway and demon
advocacy ePatient fibromuscular dysplasia FMD rare disease social media #hcsm Medicine X writing storytelling death medicine 2.0 mindfulness relationships stroke technology Mayo Clinic caregiver dying family life mental health patient care publishing advance directive anxiety bucket list depression Buddhism alternative medicine cancer humor rheumatoid arthritis women Buddha health literacy marketing marriage
29 July 2011
27 July 2011
I've been having trouble parsing my identities—writer, editor, teacher, patient, wife, student... Each title fits, and yet there are still others that I could use depending on the context—gardener, traveler, daughter, foodie, eco-friend, arts lover, sports fan... At any given moment I am each and every one of these things; but who I identify myself as changes based on who is in the room. Does this make me interesting, diversified, and busy or just plain crazy, undirected, and harried? Do I admire people who have a clearly defined personality or do I see them as one-dimensional and boring?
Twitter—of all things—is what has gotten me to contemplate these questions. I'm not an avid "Tweeter," but I joined the Twitter ranks a few months ago to learn more about the effects of social media. (Don't I sound like an old fart?) What has struck me most is that those I follow each has his or her own "thing." Mark Peters, aka wordlust, is irreverent. Andrew Evans, aka WheresAndrew, does travel. Ed Nickow, aka TheCubsInHaiku, offers just what his handle implies—coverage of Chicago Cubs' games in haiku form. Each has a specific focus. They don't tweet about their other hobbies or their families or any other aspect of their lives that doesn't fit within their narrowly defined Twitter persona. I don't know how to censor my self that way. My blog is a testament. There are posts about teaching. There are posts about gardening. There are posts about a short-lived position I had as a test proctor. There are posts about my medical history. There is no focus. There is no theme.
Unless, of course, the theme is me. But where will that get me? Isn't it little more than an exercise in self-aggrandizement to write post after post about the details of what's going on in my life? Who cares? What am I contributing to the dialog? I am not nearly famous enough for the putterings of my life to attract an audience. There needs to be something more. There needs to be form and substance. What can be accomplished when one is forced to adhere to form can be much stronger than when one is given free rein.
What do I want to write about? What do readers want to read about? Help me figure it out.
18 July 2011
Fibromuscular dysplasia is a seldom seen arterial disease characterized by abnormal cellular development or growth. It is most often diagnosed in women, a fact that has led researchers to theorize that there is a connection between FMD, as it is known in short, and hormones. A second postulation is that the disease is a genetically based development disorder. These theories—and others—remain exactly that, and the disease’s cause remains unknown at this time. However, there is evidence that chronobiology-based treatments may have a role in managing fibromuscular dysplasia.
Unlike more common diseases such as diabetes or cancer, FMD is not clearly symptomatic. Diagnosis is often stumbled into after arterial condition has deteriorated so as to manifest a vascular event such as high blood pressure, kidney failure, or stroke. Additional manifestations include a bruit heard within the carotid arteries, swooshing sounds in one’s ears, ringing of the ears, vertigo, dizziness, headache, neck pain, transient ischemic attack, arterial dissection, intracranial aneurysms, and Horner’s syndrome, a rare disorder that occurs when select nerves that travel from the brain to the eyes and face are damaged, causing a drooping eyelid, decreased pupil size and decreased sweating on one side of the face.
Imaging such as magnetic resonance angiography or arteriogram is the prescribed method for diagnosing FMD, which in its medial form presents a “string of beads” appearance in the affected artery. The less common and more aggressive form of FMD—the form with which I am expecting to be diagnosed at the Cleveland Clinic on August 3—causes arteries to become extremely narrowed or completely occluded without the hallmark string of beads appearance. The disease is incurable and, unlike arterial diseases such as Takayasu’s or Wegner’s arteritis, cannot be treated with steroids or other medications. Surgery often is required to maintain or restore affected arteries’ patency.
For now the best—and only—form of management for FMD is repeated screenings to monitor patients’ arteries and for patients to foster good health practices common to other vascular patients such as not smoking and eating a balanced diet. However, patients and doctors would be well advised to implement precautions based on biological rhythms into routine FMD management. “A group from Harvard estimated this risk and evaluated that on average, the extra risk of having a myocardial infarction, or heart attack, between 6 a.m. and noon is about 40 percent,” said Roberto Manfredini, professor of internal medicine at the University of Ferrara in Italy, in an article on the most likely time for one to experience a heart attack published by TimeHEALTH. “But if you calculate only the first three hours after waking, this relative risk is threefold.” Manfredini explained that the body’s cardiovascular system follows a circadian rhythm and that functions carried out in the first waking period of the day require that the heart receive more oxygen at the same time that cortisol raises blood pressure and catecholamines increase heart rate. Though we may feel groggy, our body is ramped up for action.
Furthermore, Manfredini explained that morning is when blood platelets are particularly sticky and prone to adhere to vessels. “Usually we have an endogenous system—it's called fibrinolysis—to dissolve the thrombi. But in the morning, the activity of our fibrinolytic system is reduced,” he said. Sleep itself is dangerous as its final stage—REM sleep, when most dreaming occurs—is marked by an activity increase in the autonomic nervous system, which affects heart rate, respiration rate, perspiration, and sexual arousal, among other things.
“It's probably difficult for people to minimize the effects of their own biological rhythms. For example, you cannot avoid your morning risk by simply waking up later,” Manfredini says. The argument therefore exists that patients with high blood pressure, regardless of cause, take their medication at bedtime so that, assuming one pill offers 24-hour coverage, the medication is in a higher concentration in the morning instead of petering out on the verge of the next dose. Given FMD patients’ pre-disposition for stroke, transient ischemic attack, arterial dissection, and intracranial aneurysms, it is wise to keep blood pressure in control and keep naturally-occurring morning peaks from further stressing the system by taking medications to lower blood pressure, such as prescription diuretics or Norvasc, at night. Given the same proclivities, ensuring that blood-thinning medications such as aspirin or Plavix are taken at night so as to reduce morning risk is recommended.
FMD is most frequently seen in the renal arteries and may reduce blood supply to the kidneys. The result is emission of the enzyme rennin, which raises blood pressure to force blood through the kidneys, and reduced kidney function. Impaired kidney function means that the body cannot properly flush itself of waste. FMD patients in particular should not take nonsteroidal anti-inflammatory drugs (NSAIDs)—common over-the-counter pain relievers—which reduce the catalytic activity of prostaglandin synthesis. A prostaglandin is a lipid compound derived from fatty acids and produced throughout the body. Prostaglandins have a variety of physiological effects including increasing the glomerular filtration rate—a measurement of how well a kidney functions—as well as constriction or dilation in vascular smooth muscle cells, found in all blood vessels. An FMD patient taking NSAIDs thereby inhibits his or her own kidney function and the synthesis of prostaglandins, the vasodilatory variation of which is being researched as a modulator of vascular smooth muscle cell growth. FMD is marked by proliferation of smooth muscle cells. The discovery of two cyclooxygenase (COX) isozymes—COX-1 and -2—has launched a new line of drugs with potentially fewer side effects than NSAIDs as well as shed light on the role each play in the biological rhythms and homeostatic maintenance of the gastrointestinal tract, renal function, blood clotting, pain, and fever.
A downside to the recommendation not to take NSAIDs is that FMD patients have limited drug options to treat pain caused by inflammation. Chronotheraphy studies of other diseases marked by inflammation have shown positive results. Osteoarthritis pain peaks at night while rheumatoid arthritis pain peaks in the morning. Drug dosages are consequently timed to match peak blood levels of the drug with pain. The research indicates that there is a biological cycle to inflammation, the further study of which could give FMD patients a way to help manage pain caused by inflammation without NSAIDs and to treat pain with newly developed COX-2 targeting drugs at optimal times. “Chronotherapy is not well recognized in the medical community but awareness is increasing,” said Gerald Sokol, M.D., an oncologist with the division of oncology in the Federal Drug Administration’s Center for Drug Evaluation and Research. “The implications are broad in every area of medicine."
Blue, Laura. “When Are You Most Likely To Have A Heart Attack?” time.com, Time
Health. 22 July 2008. Web. 16 August 2011.
Caswell, Jon. “The String of Beads No One Wants.” Stroke Connection. March/April
2007. 16-21. Print.
“Chronotherapy – Tunes In to Body’s Rhythms.” medicinenet.com, MedicineNet.com. 6
July 2004. Web. 16 July 2011.
Simmons, DL; Bottling RM; Hla, T. “Cyclooxygenase isozymes: the biology of
prostaglandin synthesis and inhibition.” PubMed.gov, U.S. National Library of
Medicine National Institutes of Health. September 2004. Web. 17 August 2011.
“Inflammation Research Opens Route to Better Pain Relief.” sciencedaily.com.
ScienceDaily, 26 March 2010. Web. 17 August 2011.
“Prostaglandin.” wikipedia.com, Wikipedia. 14 July 2011. Web. 17 August 2011.
Schror, K; Weber AA. “Roles of vasodilatory prostaglandins in mitogenesis of vascular
smooth muscle cells.” PubMed.gov, U.S. National Library of Medicine National
Institutes of Health. 1997. Web. 17 August 2011.
“What Is FMD.” fmdsa.org. Fibromuscular Dysplasia Society of America, September
2008. Web. 16 August 2011.
14 July 2011
When one makes a bucket list does he or she put the items on that list in the proverbial bucket once they have been accomplished or take them out? Does the list exist purely independently of the bucket? Or is the list written on the bucket, each item diligently crossed out with a stringent smelling, black permanent marker, and that bucket, once satisfactorily blackened, then kicked into the afterlife oblivion?
I first began writing my bucket list in June following yet another round of surgery. My stomach had ruptured seemingly on its own, which caused the doctors to be concerned that the event was the latest symptom in my troubled vascular history. I decided it was time to meet with a doctor who specializes in the disease it seems most likely that I have but have not yet been officially diagnosed with — fibromuscular dysplasia. My appointment is on Aug. 3.
Since writing the first 30-item bucket list, I have added six more tasks to accomplish; however, I admit that four of those six items were put the list simply so that I could say that I've already done them: Make my parents proud; Be in love and loved by a man who brings out the best in me; Be passionate about something and share that joy with someone else; Be true to myself. And while I am no closer to doing the number one thing on my list — pet a tiger — I have made a decision to bring me closer to items number two - get more than a magazine article published, preferably a book - and three - write a book.
By January 2012 I will have accomplished item 26 on the list — finish my master's degree — which will free up some time to do other things. With this time, and an official diagnosis, I feel that it will be the time begin work on a book. Doing so will in turn help knock out items 22 — raise awareness of whatever disease I am finally diagnosed with (all signs point to Intimal Fibromuscular Dysplasia), 23 - participate in research to help with the diagnosis of my disease, and 24 - help teach other patients how to be good patients who are proactive and involved in their healthcare. Consequently, I have begun a search for subjects to interview.
I am seeking:
Doctors or nurses willing to go on record about their experiences with patient care.
People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences.
People who have been patients within a hospital setting or been seen by several doctors for one condition and are willing to go on record about their experiences - AND - can get their doctors to talk about their case.
If you or someone you know fits into one of these categories, please contact me. Not all those who respond will be interviewed and not all of those interviewed will be included. My focus is narrow, though my hope abounds.