Well, it has been a week of migraines. My normal med, Fioricet, wasn’t working but was still giving me the “saps all my energy for a day” side effect, so I called my neurologist. Of course it took over a day for him to get back to me and then it was to tell me to take the NSAID powder he had given me a sample of. Interestingly, my memory of the instructions were that I was only to take it before the migraine became full-blown. So, I took it and so far it seems to be working. I’m dizzy and it tasted awful, but it seems to have at least temporarily knocked out the major pain of the migraine. I’m still left with the fun fogginess and dizziness that are the lovely side effects of all of these meds. However, it is better than the mind crushing pain of the migraine. So now I’m back at my desk preparing to respond to the email interviews that I began this week. (Hence, the “dissertation” part of this title.) The migraines have slowed me down, but I’ve used the foggy moments, during which time writing is not an option, to organize my notes, collate some of the collected data, and enter sources into my Sente database. Hopefully, I can write a post soon on my digital workflow. For now, suffice it to say I have made great progress in my (finally re-approved by the IRB) research study, thanks to the help of my participants, who have been wonderfully forthcoming in answering surveys and now interview questions. To any of you who read this, thank you so much! I’m so lucky to have a set of participants who believe in the importance of this research. It really keeps me going through these times of my own personal difficulties.
Category Archives: Chronic Babe
Okay, so I’m over a week late on this, since WMH Day was on the 11th, but better late than never, right? Actually, I’ve been thinking about posting this for a while now. I’ve posted some things about my disorders but feel most comfortable posting about my physical health. It seems that my physical health has always been fodder for public consumption. If nothing else, having physical problems seems so ordinary to me because I’ve always had them. When you’re born with cancer, doctors, nurses, hospitals, needles, and the like are normal parts of everyday life. Growing up, I had more “friends” who were health care professionals than I did kids my own age. When you’re a child with a compromised immune system, play dates are out of the question. Hell, even my own sister had to stay with my grandparents from time to time just in case she brought some germy germs home from school with her. Physical health problems were just a part of my life, like bedtime and CareBears. And (at least when you’re a child) physical health problems don’t carry the same stigma that I’ve found to be true as an adult woman. Sure there were some kids who were afraid they might “catch” my cancer or who made mean jokes, but adults mostly felt sorry for me and, not knowing that there was anything wrong with this, I accepted it along with the spinal taps, months of hospital incarcerations (as I now think of them, though at the time I was the beloved daughter of the pediatric oncology wing), blood draws, IVs, surgeries, and so on. Also, as a child with cancer you’re encouraged to talk about your illness and how you feel physically at any given moment. Doctors need that information and so do primary caregivers. When I was six and got the chicken pox, I just laid down without telling anyone and I was then hospitalized for over a week. So, saying “I don’t feel good” when you’re a recovering cancer patient generally means that you’re coming down with more than just the sniffles. Let’s just say that once you’ve had multiple spinal taps, you revise the meaning of pain.
When med school students and interns are brought into your exam room on a regular basis so they can see the physical manifestations of one or more of your rare disorders, you kinda lose your shyness and to be frank, your physical problems seem to be part of the panopticon. Private and public get really blurry once you’ve had your ass hanging out of a dressing gown while twelve interns take turns looking at your eyes through a scope to see “this truly rare manifestation of Horner’s syndrome.” However, mental illness was a thing of silence and whispers. It was self-medicating relatives and suicides discussed as gun “accidents.” It was a little girl who would stay awake for three days straight before collapsing from exhaustion. I was nine years old and though it’s rare for children to exhibit signs of bipolar disorder at such a young age, my doctor and I determined that this was likely my first manic “episode.” It was my ninth birthday. Yes, that’s right; I have bipolar disorder.
Now here’s the laugh riot: I’m fine disclosing the details of my physical health (we’ve been over that), and I’m even okay talking about my primary PTSD and chronic depression diagnoses, though I shy away from the details. I’m not as strong as the bloggers who are participating in my dissertation research, though they are helping me get stronger. So, back to the point: admitting that I’m bipolar is harder. I don’t even like telling healthcare professionals about it. I feel such a strong stigma surrounds it that I am quick to qualify that I have Bipolar-II and not Bipolar-I. In other words, I have hypomanic episodes rather than manic and since my diagnosis is Bipolar-I with melancholic features, I have more pronounced depressive episodes. I don’t get psychotic. I don’t go on crazy shopping or gambling binges. My mania is not dangerous; my depression is. When I’m in manic phase, I’m super-productive and while I might speak a little faster than usual and seem overly energetic, I am for the most part indistinguishable from the “average” person. My depression on the other hand tends towards anhedonia. Sometimes I just feel “down” but the bad times are when nothing makes me happy. And yes, I become suicidal. This is why I am on (and probably always will be on) medication. Even typing this scares me. I fear the stigma. I’m afraid that potential employers will read about this and my physical health problems and decide not to hire me. Maybe even decide not to interview me. In spite of the fact that there are laws against it, it still happens.
Stigma happens. And I’m afraid of the stigma associated with mental illness. I don’t want to be defined by any of my illnesses. I want to be known as me not as some diagnostic code on a doctor’s office form. And that would be all well and good if I was the only one. But I’m not and coming out of the psychiatric closet is the first line of defense against stigma. I encourage you to come out of the closet like I have. Like my research participants have. Read Seaneen / The Secret Life of a Manic Depressive — Stigma of the Self and revolt against the stigma of the self.
So, diagnoses are a mixed bag. In some ways they bring relief. You know something is wrong with you; it’s making you miserable; but the misery is almost matched by the anxiety of not knowing what or why. At the same time, the relief is tempered by the depressing realizations that go along with these diagnoses, in particular those that can’t be cured. This is a typical story for me. On the one hand, I’m happy that these diagnoses-those from my adult years-have not been imminently life threatening. While many of them carry risks, most simply require lifestyle changes and of course, the requisite pharmacological treatment. So I have to take a handful of pills a day. Could be worse. While these medications come with their own baggage–weight gain being among them–I can live with them. Then we have things like celiac disease, a serious pain in the lifestyle change department, but I’ve dealt with it and continue to do so. My conditions are treatable if not curable.
Now we have one of my more recent diagnoses, which is both incurable and virtually untreatable. Now, it’s not going to kill me, but it does have the rather unpleasant side effect of making me miserable on a relatively frequent. Welcome to the world of chronic idiopathic insomnia. I’ve had problems with sleep ever since I was an infant, but then again I had cancer and was pretty sick, so they were a little more concerned with all those malignant cells taking over my body and less interested in whether or not the sandman visited me on a regular basis. As a child, my inability to fall asleep at appropriate times were often attributed to stubbornness and my chronically overactive mind. As an adult, people would constantly chide me for my consumption of coffee, lack of discipline in maintaining an appropriate sleep schedule, stubbornness (again) and so on. As an adult my lack of sleep and its accompanying problems were considered to be my fault, one more in a long line of lacks and deficiencies that I should be able to control if I was worth anything. I’ve gone so long having people blame me for my health problems that I’ve deeply internalized it. It’s been easy for me to blame myself for my increasingly debilitating insomnia. I’ll admit it; I’m a little angry. So here’s a big “screw you” to all of the people who’ve criticized my lifestyle choices and discipline. Many of you have no idea what it’s like to try to hold a coherent thought while going on four hours of sleep over the span of three days. Oh, and BTFW, it’s not the coffee.
The following explanation is provided by the American Sleep Association:
Idiopathic insomnia is a rare form of chronic insomnia that contains no visible signs of its cause. It is a life-long syndrome that seems to present upon birth, and is theorized as being the result of an underactive sleep system, or overactive awakening system, but no verifiably true origin or cause of the disorder is known.
It is known that idiopathic insomnia exists without the detectable presence of other sleeping disorders, medical problems, medication or substance use or abuse, any underlying behavioural problems that could cause poor or unfulfilling sleep, and any psychiatric disorders. It is also not the result of poor sleep hygiene. Idiopathic insomnia often occurs nightly, and may include short sleeping times, numerous nighttime awakenings that cannot be explained, and difficulty falling asleep even when the body feels sufficiently tired to do so. This all happens without the presence of any stress that may cause a similar scenario in others, no psychological or neurological disorders, and no medication or substance use.
One of the things that I take from this explanation is the comfort that it isn’t my fault that I can’t sleep. I’m not doing anything wrong; I didn’t do anything to cause this; and there isn’t anything that would have helped had it been diagnosed earlier. (This last point is pertinent because I tend to flog myself for ignoring my health problems.) The down side to this is that idiopathic insomnia like mine is incurable and resistant to treatment. For years and years doctors have tried to help me get a decent night’s sleep and I’ve spent even longer researching sleep for the same reason. So far, no cognitive behavioral therapy has been effective and pharmacological therapy doesn’t make a dent. I can go for days without sleeping at all. I feel zombie-like, exhausted, and befuddled. It takes me two and three times as long to perform simple tasks. And since I’m an epileptic, I can’t drive in my sleep-deprived state. So, I stay at home and try to work. My scholarly writing and reading takes much longer, but I try. Around the house work often results in broken items and trips and falls, but in spite of the black and blue marks and the pain, I try. During the past two weeks, I’ve slept a little more, thought it tends to be at odd times, for short periods, and not particularly restful. Still, I’ll take what I can get. My doctor warned me that I’ll never reach a point where I will experience “normal” sleep and feel truly rested, but I’m happy for what I can get. Oh, and apparently at least one other person is happy. My sleep doctor tracked down my internist in the doctor’s lounge so that he could thank him personally for referring such a fascinating (read: rare and unusual) case. Turns out less than 1% of the population has chronic idiopathic insomnia. Well, at least I’m making someone happy.
For the past months I have not only taken a hiatus from blogging but also, to some extent, life. It’s been a difficult time for me, both in body and in mind. I’ve experienced a host of problems in all aspects of my life; perhaps I should have seen the implosion and explosion coming. I didn’t.
I suppose it all traces back to my dissertation troubles. When ethical issues arose regarding my participants, I had to make a difficult decision: complete the dissertation and risk harming my participants or rework my methodology, rewrite most of my diss, and risk my job in order to make every effort to protect the psychological well-being of my participants. I chose the latter, unwilling to take the chance that my career aspirations might harm someone else. For me it seemed like the ethical, the right thing, to do. I still believe that, in spite of the fact that it has indeed cost me my job. For the first time since I was old enough to work, I am unemployed. It may have been the best thing to happen to me at this point.
For six months I ignored an ongoing fever, increasingly debilitating insomnia and headaches, dizzy spells, and a deteriorating mental state. I moved 900 miles to a new town, became a first time home owner, started a new job as an Assistant Professor, taught writing to a total of 98 students, had no doctor, made no friends, and tried desperately to complete that dissertation so that come the Spring, I would still have a job. My illness, the stress and time consumed by teaching, lack of medical care (my fault, I know) and social support were too much for me. By the end of the semester, I could barely function, and I was profoundly depressed. I felt that I had failed at the one thing that truly mattered to me, the one thing that made me important and special– my career. And I was wrong.
The truth is that your career means little if you aren’t around to enjoy it. This is where the scary admission comes in: I was suicidal. It wasn’t the first time and sadly, it probably won’t be the last. I owe my survival mostly to the best friend of mine who didn’t. My first year of grad school at Purdue was his last and it damaged me so profoundly that I’ve understood how much more it hurts the ones who love you. Suicide is the ultimate ” fuck you” to the rest of the world. As easy as it might seem, I can’t hurt those I love the way I’ve been hurt. And damn, it’s really hard to admit publicly that I’ve wanted to make that escape, but slowly I am learning to practice what my dissertation preaches. I’m getting past my fear of disclosure. I’m speaking out instead of being silent, in spite of how it will influence the way others see me and, even more frighteningly, that it might hurt my career. However, I take comfort in knowing that my greatest strengths as a scholar and teacher are my compassion and empathy, my true desire to help others and work for positive change. I applaud my participants for speaking out, and my dissertation practically advocates for blogging as a mode of healing. How, then, can I see my own silence as anything but hypocrisy? Maybe I’m being too harsh, but even so, I’m taking my chance and stepping a little farther into the blogosphere of self-disclosure. I’m stepping away from my fear of being perceived as narcissistic and into an awareness that my writing is sharing. It helps me, but it also has the potential to help others not feel alone in their own struggles. And that, dear reader, is not in the least bit narcissistic.
And so, I return to both living and writing. I crawl out of my cave; blinking into the glare perhaps, but what really matters is that I’m opening my eyes again.
Good news– a recent study found that a common diabetic medication actually kills cancer stem cells. A much better development than the discovery that Viagra helps more than just the heart. Check it out on slashdot.
Well, once again the universe steps in and prevents me from blogging (or getting additional work done). In the early morning hours of Wednesday, March 4th, I suffered an atonic seizure causing me to fall and hit my head on the ground. Fortunately, the person who I had just said goodbye to heard me collapse (just a thud; I didn’t cry out). I was knocked unconscious and suffered a three and a half inch gash above and around my left eye. I was rushed to the emergency room where I laid, head in a cervical collar, for several hours while they poked, prodded and scanned me to determine whether or not I had broken my neck or spine. During this process they cut my clothes off of me (favorite black sweater is now literally on the scrap heap of life) and put in a catheter (least fun procedure of the evening). To make this story brief, after the doctor put in fourteen stitches and washed the blood off of my face and hands, I was released to friend who so kindly came to pick me up at 5:30 in the morning. The past few days have been difficult at best. I’ve had some residual cognitive problems and have been unable to drive. I’ve also had to replace my glasses, which were busted in the fall as well as my coat and scarf which were covered in blood. Most significantly, I have noticed how much people stare when you have a giant gash on your forehead and a black eye. They are also comfortable asking me a multitude of questions regarding my wounds.
To add a few notes of explanation: I had my tonic seizure while I was walking across the street. This means that I was laying in the street. I am thankful that someone heard me fall and that I did not fall in front of traffic. In addition, I am thankful that I still have all of my teeth, did not injure my eye itself, and did not break any bones. This could have been much worse. So, reader, I am still alive and typing away.