Saturday, May 31, 2008
It happens all the time, but I never see it coming. It happened today. I was volunteering at a community event, when a couple came over to our booth. They were fairly generic, two small kids, nothing out of the ordinary. There was the usual chit-chat related to the event when someone else in the booth suggested that the woman get involved with the program I oversee.
She said she had already been a part of it years ago, but felt it wasn't a good fit now. I asked her to tell me her name, and when she did, I said, "Well, of course, Nicole! I had already taken over the program then." She looked at me and was puzzled.
"No, it wasn't you."
"I'm sure it was me. It wouldn't have been anyone else."
She looked at me again and said, "Wow. I just don't recognize you at all."
That's when I understood. Of course she didn't recognize me. I had gained 50 pounds since then. She wasn't the first person who couldn't recognize me post-2003.
"Oh, Nicole, I do look a lot different since then (and I'm not so hypomanic I'm spiraling up into the stratosphere). I've gained a lot of weight since you saw me last. I had a neurological event and the medication I take now causes rapid and inescapable weight gain. Trust me, though, I am the same person you knew six years ago."
It was actually a friendly conversation. It was still better than our former neighbor who saw my husband and I about two years after I started the medications. When I say "saw," I mean from a half-block away. The neighbor saw my husband again a weeks later and asked, "Has your wife had her baby yet?"
Yeah. It's like that. Again and again and again.
Friday, May 30, 2008
First, from National Public Radio, an interview with Sandra Aamodt and Sam Wang, authors of Welcome to your brain: Why you lose your car keys but never forget how to drive. (Purchase information is available here.) It's a good interview about what our brains actually do and don't do. Lots of myths are revealed for what they are, but for every myth busted, Aamodt and Wang replace it with a fascinating factoid. I love learning about the brain. I figure if I embrace the information, I might stop resenting so bitterly the brain I ended up with. To hear the engaging three-minute interview, click here.
Also from NPR, a short piece about shingles. How timely. I heard this on Thursday and hoped they were going to explain why the vaccine is only available to people over 60 years of age. They didn't, but it's an interesting story anyway. After listening to the piece, I was surprised to find out that I had three predispositions to the illness. I think I was biologically screwed on this particular issue. You can read the story or listen to it by clicking here.
Finally, where Ann Landers left off, Dear Margo carries on, albeit in a somewhat snarky tone. Today's big question is from a 26-year-old woman with bipolar disorder who is surprised to find out that her fiance loves her when she's manic, but is none too keen to stick around if she's depressed. Poor thing--she must be new. You know, when someone gets a BP diagnosis, they should be given an informative pamphlet detailing how all personal relationships will now crash and burn with alarming speed. You can read the whole question and Margo's unexpectedly sensitive reply here.
Tomorrow I'm working on a special project and will be spending the day with a sullen 16-year-old girl. It doesn't matter that she's African--all 16 year-old girls have a knack for being sullen. This one does a killer deep-sigh-with-eye roll. Extra points for when she also crosses her arms over her chest. I just found out that I am the same age as this girl's grandmother. Oh, dear God--is that what she sees when she looks at me? Someone who is grandmotherly? I'm horrified.
That's all from the news roundup. May has a splitting headache that is borderline migraine. Alas, since Lyrica is a blood thinner, I can't treat my headache in the usual way with handfuls of Advil. I'm not sure what I'm going to do, but at this point, I'm pretty sure my right eyeball is going to pop out of my head.
Check out the links listed. It's worth the time. I'm off to bed with my headache.
Tuesday, May 27, 2008
As I mentioned before, there was a point in my treatment when I had to change almost all of my medications. this included going off of SSRIs. Rumor has it that if you do that slowly, you won't notice a thing. There are legions of dizzy, barfing people who will tell you that's a lie. there are also people who will tell you that SSRIs are not addicting--these people work for pharmaceutical companies. A former friend of mine--who happens to work for one of the companies that makes one of the SSRIs that made me very, very sick during withdrawal, showed her support by saying, "It's not withdrawal; it's just a step-down reaction." You say tomato, I say, fuck you.
As I was going through the long, slow process of detoxing off of an entire class of medications, I started to realize that I could smell things. The people around me swore I was imagining phantom smells. They speculated that maybe the medications were confusing the olfactory signals in my brain. that was a short-lived theory as we all realized that the things I smelled were real, but so subtle that they were undetectable by the normal human nose. As the weeks went by and my brain became even more muddled, smells became the almost unbearable bane of my existence. I thought, This must be what it's like to be a dog--except I cannot filter out those smells that are meaningful. Can smells be meaningful?
The overwhelming plethora of everyday smells in the world did not help my nausea at all. At home, I was plagued by a mysterious petroleum-like smell that I could not identify. After weeks of trying not to gag while I watched TV, I found the source: It was a black Kong dog toy that my husband could only smell if he held it up to his nose. It had been sitting about eight feet away from my chair for weeks.
I mentioned this bizarre symptom to my doctor, and he frowned a bit as he said, "May, that's not a side-effect of this medication." I insisted that it was, and then I reasoned that it must be a side-effect of withdrawing from the drug. The doctor looked skeptical and said, "Noooo. I've been working with these medications a long time, and I'm pretty sure an acutely enhanced sense of smell isn't on the list of reactions." He was wrong. I know it.
At the time this was going on, I bought some teak-type outdoor wood furniture, including a bench for the front porch. The wood comes unfinished but with strict instructions to oil the furniture as soon as it is assembled and in place. The Nyatoh wood required a two-day treatment of five coats of teak oil that had to be rubbed in by hand. I got out the can of oil, some new cotton rubbing cloths, and gloves. As soon as I uncapped the can of oil, I knew I was in trouble. The first rush of odor coming out of the can made me gag.
I started to oil the bench, and I had to hold my breath. The oil smell was making me dizzy, but mostly, it was making me feel sick just because it so powerful. I couldn't understand how people built furniture and worked with this stuff on a regular basis. My husband came outside to see how it was going. I was clammy with distress sweat and I had taken a break about halfway across the front yard. "The smell of that stuff is killing me. It should come with a warning."
My husband looked puzzled. "What are you talking about? It's just teak oil, right? I'm standing right here and I don't smell anything. I mean, I smell it, but it's not noxious or fumey or anything. Are you sure this is what you smell?" I was turning a nice shade of green that almost matched the lawn.
It took me hours to finish the bench because I couldn't bear the smell of the teak oil for more than a few minutes at a time. I swore I would never do this task again.
Nature has a way of making us go back on our word. The bench stays outside all year, we live in a dry, sunny climate (ha!), and it was time to try oiling again. On Monday, I got out everything I needed and hoped I could stomach the smell. I opened the can of oil. fine. I poured oil onto the cloth. Fine. I started saturating the wood. Still fine. As I worked, I realized that the oil had a very mild, almost pleasant scent. I had no problem at all getting the job done, and I was able to breathe normally throughout the entire process.
It made me realize that my olfactory senses had, in fact, been jarred into freakish hypersensitivity by the neurotransmitter storm SSRIs had set into motion. It took a couple of years, but eventually my nose went back to its normal, usually somewhat stuffy self.
Never underestimate the weird power of a differently-wired brain and the nervous system that goes with it.
Monday, May 26, 2008
The perky assistant at the front desk handed me a stack of papers to fill out. I sat in the elevator vestibule on one of two tired, gray waiting room chairs and balanced the clipboard on my knee. I wasn't even through the first page when Toni, the therapist, stood over me and said, "You can finish that up after. Come on back."
I followed her through a somewhat narrow, windowless room filled with people involved in various body bending, muscle mending activities. We walked almost to the back of the facility, through a set of paned glass doors, past a heavy red curtain and into a tiny room with an examination table in the middle. I took a seat in the only chair, a standard vinyl upholstered steel framed business-only chair.
Toni pulled up close on her rolling stool and used the exam table as a desk. She asked how I had been referred to her and what I perceived my illness to be. I gave her the referral form from the urologist. As I pulled out my typed list of medications (there are eight right now), I explained to Toni that I had been dealing with this problem for over 20 years and I was skeptical that there was any relief in sight. I went on to tell her that after the urologist's exam, I was in excruciating pain for weeks.
Toni had been using the exam table as desk while taking notes. She put down her pen, looked at me, and leaned closer. "May, did the doctor tell you what goes on in here?" Oh my god, did people come here not knowing that?
My eyes opened wide and I said, "Weeeeellllll, no, she didn't, but I looked it up on the Internet. Of course, everything I found was so carefully worded, it didn't really tell me anything, so I posted on a forum and said, 'OK, people, just be straight with me and say it in plain English. What am I in for with this physical therapy?' So, I guess I do know, but not because the doctor told me."
Toni laughed and said she was going to make up an information sheet for the doctor to give to patients. Apparently, quite a few patients come in for the consult and are horrified when the details of the therapy are explained. And then they get up and leave, sometimes leaving skid marks.
I have a nervous habit. Actually, I have many, but the most prominent is that I shake my foot. It doesn't matter if I cross my legs or my ankles, or if I have my feet on the floor (then I bounce my knee), I am almost always fidgeting some way. Toni noticed this, and interrupted her own sentence to say, "May...I want you to put both feet flat on the floor and don't shake anything. Why do you do that?"
"I don't know why I do that. I've always done that."
"OK, for now and the foreseeable feature, I don't want you to do that. Be still. Try to be still."
Our conversation went on, and although I hadn't realized it, I was now tapping my right foot rather quickly. Toni kept talking, but she very gently reached over with her own foot and softly placed it on top of mine. She never broke the pace of her conversation, but she was more aware of my nervous energy than I was.
As I wrapped up my medical history, Toni said something remarkable. "May, the first thing we need to take into account with you is that, based on your medical history and current conditions, we know that your brain and your entire central nervous system are wired very differently than other people's. That means you are going to think differently, but more relevant to your being here, you feel physical sensations differently. That presents certain challenges for any nerve-related treatment, but it's nothing we can't work with."
I crossed my legs, and Toni immediately told me to put both feet flat on the floor. She explained that the autonomic nervous system, when left to express feelings related to stress, will cause phantom or misdirected pain. Furthermore, it serves as a distraction and we don't focus on the true source of our physical discomfort. Stop shaking you foot, May.
We talked more about my abdominal pain and the upcoming therapy. Then, Toni asked me what I do for exercise. I was honest. "Nothing. I do absolutely nothing. Unless you count walking 12 minutes from my car to my office and then back again at the end of the day. I walk briskly." Toni looked at me and said, "I want to see you do more than that." Oh, yeah, you and everybody else.
She asked if there was ever a time when I did exercise. I went through the whole history. "Well, yes. I was never athletic, but in my quest to be unnaturally thin, I exercised. I spent my twenties going to 5:30 a.m. aerobics classes six days a week, only to return and do it again after work. On Wednesdays I took an abs class. I never did lose any weight or look any better, even though I lived on salad and chicken breast. In my thirties, I went on to ride my bike hundreds of miles every month. I got down to 123 pounds, but I had to keep eating less and less and exercising more to maintain it. I also used to walk for exercise, I rode my bike to work, and then I took up running. I used to get up early and run around Municipal Park every morning. that didn't work out too well because I ended up needing knee surgery and now that I don't have much cartilage left behind my patella, the surgeon has forbidden me from running or walking for exercise. I had a YMCA membership for a really long time, and I used it. Ask my husband. For about six years, I pent at least ten hours a week in the gym, including Body Pump classes an working with personal trainers, but I was still a cow. I stuck with it, though. Of course, right before my bipolar disorder peaked, something else went wrong in my brain because I lost my balance--guess that makes me unbalanced, ha-ha--and I couldn't ride my bike anymore. I have four bikes, including a stunning Italian steel touring bike, but I can't bear to even look at them. You know, I started taking all of those meds and I gained 50 pounds, so unless I can excercise in complete secrecy or under the cover of darkness, that's about it and me and exercise.
Toni nodded and wrote something down. Then she told me that thing. That thing that makes me roll my eyes and cringe. She told me that I needed to start a program of meditation or focused deep breathing, conscious relaxation, perhaps yoga or Tai Chi. And I burst out laughing. I think she is now the fifth medical professional to tell me this. She asked who was the last one. "Oh, the urologist. and before that, the doctor who treated me for shingles."
Toni pointed out that shingles hits the nervous system, as does bipolar disorder, as does interstitial cystitis and pudendal nerve damage. "May," she said, "the shingles episode was a wake-up call." Then she suggested Pilates because it improves balance and strength, and uses focused breathing, but doesn't require balance or strength when you start it." I laughed again. She just looked at me and said, "What?" "Let me tell you about the Reformer in my basement...As soon as the shingles inflammation goes away and I can lie on my back, I'll get right on that Pilates routine."
Pain. If only we never felt it, think of how productive we would be... I haven't decided if I'm going back for the icky part of this PT. Probably not.
Abdi is almost 21 years old, but that is strictly in the chronological sense. He slips back and forth between two identities; one is a mature and responsible young adult who is leading his family through the adjustment years in a strange and overwhelming new culture. The other Abdi has a short temper and even shorter attention span. He tries to be part of everything and he has little patience when he can't keep up.
Abdi was born in Somalia, part of the Bantu ethnic group, the group firmly entrenched at the very bottom of the Somali social strata. When Abdi was ten years old, he helped his parents shepherd themselves and four younger children through a war-torn Somalia, across the border into Kenya, and then hundreds of miles further into the country to the Dadaab refugee camp. Abdi missed his childhood, just like the tens of thousands of other refugee kids in the Kenyan camps. He was able to squeeze himself into the overcrowded, irregularly held primary school classes at Dadaab. His formal education involved little more than learning the alphabet and some very basic reading, writing, and first-grade math.
When Abdi came to the United States four years ago, he spoke little English and lacked the fundamentals of basic education. Despite this, he was placed in a sheltered English program in a city high school. He was 17 years old, and the clock was ticking. If he couldn't cram his head full of state required competencies before his 21st birthday, he might never go on to get a diploma.
Abdi's family was resettled with the assistance of a volunteer team from a local church. One of those volunteers, a prominent local attorney, made sure that Abdi was properly enrolled and registered for the appropriate classes at school. Except, what classes are appropriate for a teenager who is carrying the burden of being the eldest son in a family where the parents are too disoriented to leave the house? The attorney assured Abdi he would be OK.
The next volunteer to step in was Susan, a soft-spoken, humble middle-aged woman whose long blond hair and apple-cheeked face bespoke her Swedish heritage. Susan is a practicing Buddhist, but in the real way, not in the trendy, next-week-it's-Cabala-and-then-Scientology way that so many empty nesters find comforting. Susan wears frumpy clothes--dark tights, flat shoes, calf-length dirndl skirts, and no makeup. I doubt she has ever worn makeup.
Susan took on Abdi as a personal cause. It was obvious to her, as it was to so many people, that this kid was pure potential, if only he could stay out of trouble and find something to keep him grounded in the rush of American culture and high school assaulting him on a daily basis. Susan called me. "May, I need a favor. There's this kid, and he's so good and bright, and..." "Susan," I said, "You know I can't take this on. The State will have my butt in a sling if they find out."
Susan backed off the first time, but she was really just waiting for a better opportunity. In the meantime, Abdi enrolled in after-school classes. He got a job working with elementary ESL kids in an after-school program. He completed the entire curriculum for the police department's community cadet cultural liaison program. He made friends at school. He played soccer. He helped with the little kids' soccer on Saturdays. He struggled academically.
Within two years after arrival, every single Somali Bantu high school kid had dropped out, with the exception of Abdi. The pressure to do the same was intense, not only from his friends but from a nervous school staff that didn't want to see any negative effects on their already abysmal graduation rate. The standard unwritten protocol is to push out the kids who aren't likely to meet graduation requirements by the age of 21. A dropout is not counted as a failure on the school's part the way an Unable to Graduate is. Abdi had a lot of people pushing on both sides, and he responded to all of it by becoming sullen and withdrawn. He was perilously close to quitting everything and moving to Minneapolis to join a similarly disenfranchised group of Bantu teens heading for trouble.
Joe came along just in time. I met Joe through my job and laid out my case. I explained that Abdi was a good kid who needed a male adult mentor--someone to be accountable to, someone who could help him understand his frustrations with the culture, someone who could help him master the five-paragraph essay. Joe was a 32-year-old graduate student who needed to get in some degree-related community service hours, so he figured he'd try it for the summer.
In the 18 months since Abdi and Joe met, Joe worked quietly and diligently to effectively mentor Abdi. Abdi started to focus more on school and less on his friends who were busy getting arrested, getting married, or doing nothing. Susan believed that if she could just keep Abdi busy, he would be OK. The thing is, he wasn't always OK. He was defensive and frustrated at school, and three of his teachers had already told him that there was just no way he would graduate--even though that was still a year away.
In September 2007, I asked Joe how it was going. He was a man of few words, and he only replied, "We're making progress." A week later I found out that Joe was spending between five and ten hours a week with Abdi. Abdi's grades shot up dramatically. By late November, he wasn't failing anything. By February, he was an A/B student. Susan told me that Abdi's senior pictures had come in. Senior pictures? Apparently, Joe had felt that if Abdi needed faith in the possibility of graduation, Joe was going to do anything he could to make that possibility more tangible. Joe paid for everything, including a haircut, a new shirt, and a tie.
Sometime in February, Abdi began to stumble. His attitude had tanked, and he wasn't up for listening to any motherly American women telling him to hang in there. I called Joe. Joe had taken a few weeks off from Abdi when Joe's wife gave birth to their first child. It was OK, he said. He'd stop by and talk to Abdi the following day. We'll never know what this gentle, soft-spoken man said, but Abdi turned himself around immediately.
In April, Susan called me, frantic. Abdi had gotten into a fight at school. They wanted to expel him. She was on her way over there to pick him up.
When Susan arrived at the school, Abdi was sitting alone in a conference room. She opened the door and stepped inside, and as soon as she did, Abdi, burst into tears. "I didn't do anything! I didn't. It's not what the security guy said. Susan, I didn't do anything!"
The principal, assistant principal, and the social worker were all out at a conference, so Susan had nobody to speak with except the teacher who was filling in. He couldn't tell her much, except to say that if security had brought Abdi in, there must have been a good reason. Susan tried getting the assistant principal on the phone for days. When she finally spoke, he said they would have to talk about Abdi's cse, but he didn't see why they should believe Abdi and not the security guy. On the day of the meeting, Susan arrived early to talk to Abdi before the meeting started. She put a paper in front of him, a long list of names. The first four names were Joe, Susan, the attorney, and May. "What's this?," Abdi asked, puzzled. Susan explained that this was Abdi's "village," the community of people who had put in a real effort toward his success. Susan went on to point out that if all of these people hadn't believed in him, Abdi never would have achieved so much during his short time in the U.S. "Abdi," she said, "These people care about what happens to you and have made you their repsonsibility. Do you understand that you have a responsibility to believe in them?"
As Abdi thought about that, the attorney came in the room, followed by the social worker, Joe, and Abdi's parents (who had taken off from work for this meeting). The assistant principal listened to each person speak on Abdi's behalf. He said that Abdi could stay. Now Abdi just had to keep his temper in check for a few more weeks and then he would leave high school behind, diploma in hand.
The days came faster and faster. I knew Abdi was in the home stretch, but I was holding my breath, afraid he just wouldn't make it. But he did. He met all of the state requirements to graduate. His walk across the stage represented a much longer journey--from Somalia to Dadaab to Kakuma, to America. In four years, he had learned to read and write, to take on geometry and algebra, and to master the five-paragraph essay.
Abdi had reached his goal, but he had a lot of support. It made me realize that for kids at risk, getting through school isn't so much about the academics as it is about knowing that someone is paying attention, someone is rooting for you, someone is going to show up and stand by you when you get in trouble. For students like Abdi, success isn't predicated on standardized achievement; it is rooted in the unwavering faith of the people you respect.
As I sat in the theater on Friday night, my eyes welled up with tears. He had done it. He was the first Somali Bantu kid in the entire state to have a high school diploma. I looked around at the proud families surrounding me. Abdi's family was there, and his parents--who still speak very little English--applauded enthusiastically for every kid who didn't have a cheering section of his or her own.
I picked up my program booklet and as I read the names of those in the graduating class, I found no fewer than ten names I recognized. These were the children of refugees, and for many of them--most of them--they were the first in their family to finish high school. I knew them. Some of them had translated for me, some of them had served me tea, and I had served all of their parents in the course of their resettlement. Just for a moment, I could see it. I could see that I had made a difference. My work had taken away some of the stress from these parents. They had been given resources. Because of this, they were able to concentrate a bit more on the task of parenting and supporting their children. The proof of their success was steadily filing across the stage.
After the ceremony, we made our way into the crowded lobby, where the constant camera flashes were blinding. In the midst of it, I heard my name in heavily accented English: "Miss May! Miss Voirrey! Hello, hello, my friend. This is my friend. She helped me. She helped me so much. Hello, hello!" I got kisses, hugs and smiles, and I was photographed repeatedly, much to my dismay. Afghanistan. Somalia. Sudan. Bosnia. Krasnodar. Ethiopia. They were all here, and suddenly, it was my night, too. I got the message. I wasn't graduating, but I was commencing the next part of my career. This was the infusion--the proof--I needed. I should stay.
After the ceremony, I went back to Abdi's house. The small apartment was full of rambunctious little children. One of Abdi's friends had come over to wish him well. Abdi's 15-year-old sister and her best friend served huge slabs of sugary supermarket sheet cake with huge scoops of ice cream. Abdi's mother sat on the floor and ate fried chicken and salad that Susan had brought. I sat next to her and said, "Halima, are you happy?" She broke into a huge, sunny smile and said, "Happy! Yes, yes. Good. Everything goooood.!" She may have come from a culture with absolutely no history of formal education, but it was clear that Halima understood her son's accomplishment.
Abdi has big plans for the summer. He'll spend ten weeks in the AmeriCorps progam, and then he's going to start community college. He doesn't know yet what he wants to study, but he's thinking about social work. He figures, he likes helping people and working with kids, and since he's never had any money anyway, it's not like a career in social work will negatively impact him financially.
I told Abdi he has time to figure out the details of his course of study, and for the next few months, he should enjoy just how far he's come. Consider it a rest stop before the next big journey.
I am miserable.
In the last two days, I happened to be watching two completely different, totally random cable programs. Both were in Aruba. One was about real estate. I think it's a message coming through the airwaves. Oh. Wait. Cable doesn't use airwaves. It's obvious, then, this message is being channeled directly from Aruba into my home via the coaxial path.
Aruba. Ocean. Sunny. Beautiful. Not gray, damp, and not miserable.
This has been the longest, most godawful, painfully slow and drawn-out spring I have ever been through. I need to move. Aruba...
I do not have sleep apnea, and I don't snore unless I'm congested. My theory is this: I am a shallow breather most of the time, a condition largely brought about by stress and my lack of awareness about whether or not I inhale deeply. I just forget. That being said, when I use the nasal strips, I automatically breathe more deeply. Ah-ha!
This probably isn't the ultimate cure for my insomnia, espciacially since these things are expensive, but it's good to know that during the times when I am not manic, there is something that might actually let me sleep better, if not longer. Ahhhhhh.
Saturday, May 24, 2008
A couple of days ago, I took all of my prescription bottles out of the cabinet and lined them up on the kitchen counter. I read each label and took note of the side-effects posted on each bottle. I take eight prescription medications right now, and five of them are prominentlly labeled with a warning indicating: This drug causes drowsiness.
You could have fooled me.
There's definitely a difference between feeling drowsy and being tired. I'm always tired, but usually wired, as well.
When I saw the "very special" physical therapist this week, she told me I needed to work on focused relaxation (more on this later). When I laughed, she asked why that was funny, and I explained that not only can't I "clear my head," but even when I only sleep a few hours, my brain is firing so intensely, I wake up making to-do lists.
If three anti-convulsants, a sleeping pill, and an anti-histamine--all taken together--don't make me catatonic, it makes me wonder...What the hell would be going on in my cranium without these medications. They are, after all, intended to slow down my neurotransmitter traffic, and bring the rest of me down a few notches, as well. My brain reminds me of an episode of Gilligan's Island when Mrs. Howell was eating radioactive sugar beets...
Tuesday, May 20, 2008
Sunday, May 18, 2008
My irritability finds new intensity with each 24-hour spin of the earth. There is no one particular source of this mood; there are, in fact, several.
My body has forgotten how to sleep properly. It was insomnia that first brought me to the point of seeking medical help for the storm in my head. I remember asking the doctor, "Does insomnia cause depression or does depression cause insomnia?" He never answered my question, but he wrote a prescription for Lunesta and sent me on my way. A month later, he added Lexapro, a move that only prompted my brain to induce its first full-blown hypomania. Years later, I find myself taking eight medications, six of which have or are intended to have drowsiness as a side-effect. Why, then, can't I sleep?
I am afraid that one day my brain will implode, leaving me without the ability to recover. In my fear-stoked version of saving for a rainy day, I have crammed every day full of work, work, and more work. My doctor, my husband, my therapist all warn me to slow down, take it easy, take some time and then get some sleep. They don't understand--my level of activity isn't causing my insomnia; it is a response to it.
I'm not having manic symptoms. I know this because I am only irritable and tired--I'm not talking too much, but more telling--I'm not funny. No, everything that comes out of my mouth is laced with the snap of impatience. The glass is very much half-empty and my brain seems to be capable of generating only complaints. I annoy myself, so I can't even imagine how everyone else is perceiving this mood.
And that's what it is--it's a mood. I'm tired, I'm in chronic pain, and my resources are so depleted that patience is not even in my repertoire. What is the answer to pain that doesn't respond to treatment and sleep that never comes? My time is coming out all wrong. It's all wrong.
Complain a little more, May. It's doing so much for your image...
Friday, May 16, 2008
Sunday, May 11, 2008
I know this will be held against me. (You could have made a necklace for me. But I've been sick, I've been in terrible pain, and I barely made it through the Resentment necklace. That's no excuse. I'm your mother.). This conversation hasn't happened yet, but a similar version of it will.
I'm not sure what to do with that. Guilt seems so unproductive.
The bigger question might be, why didn't I buy a gift for either occasion? The truth is simple and I think I can actually admit this: I didn't get any gifts because I did not want to. Seriously.
Thursday, May 8, 2008
It's the stuff that sitcom jokes are made of and the kind of thing that people say when they want to be particularly insulting. It's the kind of thing, that when said, reinforces our deepest cultural attitude about those who take medication for the mind: You are strange. You do not merit credibility or respect.
The reasons why lack of medication compliance is so widespread vary, but generally fall into two categories: Money and side-effects.
Many of the medications I take align my behavior more toward the center of the normal spectrum, but it's like cropping a photograph to get to the good part--No matter how good that picture looks when you've finished, you probably had to cut out some things you didn't want to in order to get a satisfactory result. My medications work well at making me socially acceptable. They also do a great job of dulling my sense of humor, slowing my thinking, drying out my mouth, and compromising my speech. I have learned to live with it.
More potent medications cause some truly terrible side-effects, many that I, if given the choice, would not accept. I've seen people with tics and shakes and stutters, and tongue-thrusting, and gut disturbances, blurred vision, hair loss, and worse. Still, patients are expected to adjust and accept these side-effects in the interest of social propriety. That's really what the meds are about--making people like me less distasteful to everyone else. My meds do stabilize my mood, but they still ain't all that.
I am currently reminded of my early struggles to succumb to the power of medication. It's all coming back to me now. The urologist prescribed three medications for me, and all three share one side-effect. All three medications make me drowsy and slow. It's like being on large doses of benadryl all the time. It's a little hard to take gracefully right now, since the drugs haven't yet started healing anything or diminishing any pain. That's how it is with the other meds--the side-effects are instant, but it takes a really long time before any benefits become evident.
I hate this feeling. It's like I'm seeing the world from somewhere much deeper inside of my head than my eyes can account for. Everything is in slow motion. I can't think of words or names. I want to sleep. Elmiron gives me terrible headaches. I'm so damn tired.
Only three months to go.
Tuesday, May 6, 2008
Could it be a result of mixing eight prescription medications?
I've been having suicide ideation since I woke up. I'm not sure why. I'm never sure why. Sometimes it just pops into my head like a bingo ball and rolls around all day. Again, I ask: Could it be a result of mixing eight prescription medications? Could it be depression? If I have to put up with this bipolar shit, then where is my occasional expansive mood and feelings of grandiosity? Huh? Why must it always be paranoia, insecurity, sadness, and irritability. Memo to brain...Variety is the spice of life.
There's nothing in particular that's setting me off, but it seems like everything imaginable is getting to me. I take things personally that can't even be personal. How sad is that??
Oh! Could it be from chronic pain??
Paranoia is definitely a bit of an issue today. Maybe it's not that serious and I'm just a garden-variety neurotic. I don't know. I feel distressed because I haven't been very productive lately. It makes me worry that I can't keep up with the rest of the world, everyone is onto me, and I am a total loser, loser, loser.
Every spring, my employer hosts a large cultural event for the community. It's A Big Deal. Over the years, I have designed invitations and posters, written press releases, created promotional materials, program brochures and a public-area display, and more. It occurred to me that this year, I seem to be in a weird position of being asked to give other people my files/samples/copies of these things because those other people have been assigned to do all of those tasks. Each department employee oversees an area of the building on event day, usually in teams of two. This year, a third person was added to my area. It occurred to me that the event is coming up very, very soon, but the other two people have "taken care of everything." I know I'm neurotic, paranoid, and insecure, but still, I'm starting to take this personally. I feel like I've been unceremoniously dumped from my previous roles, and it must be a reflection on me.
I can only conclude that my work on this project, although always prolific, has been deemed unacceptable. That makes me sad. It makes me sad because it just proves that all of my fears about my place in the world are absolutely valid. Tattoo that big L on my forehead, will you please?
Really, it makes me want to kill myself. God knows, I have enough pill-power on hand to knock out a small village, Or cure a smaller village of its mood problems, neuralgia, and pelvic pain.
I hate myself. Always have, always will. Why can't I think and process feelings like a rational, relatively normal person? Why can't my brain keep itself on track? WTF???
I decided that if and when I kill myself (probably to save my long-suffering husband from any more drama), I will post an ad on the Internet and possibly the newspaper before I go. Right before I go. People should know why other people die. My will clearly states there is to be no funeral, so this would be the means to providing closure for those nosey people who need to know what happened. those would be the out-of-touch people.
When I went to the urologist last week, I overheard an unsettling conversation. It was unsettling because it underscored the lack of understanding people have about suicide.
I was waiting for one of the two receptionists to set up a follow-up appointment for me. Next to me, another women was checking in. In a loud whisper, she asked the receptionist, "Is it true? Dr. Ruben died?" The receptionist nodded, and in a conspiratorial tone, the women leaned in a little closer and whispered, "Did he really kill himself? He committed suicide?" I wasn't about to turn and look at her or the receptionist, but they definitely had my attention. Again, the receptionist confirmed the news. The patient shook her head, put her hand on her breast, and said, "But he had everything to live for."
I know I was making that face. It's that face I make when I'm annoyed and trying not to say anything. I get that sort of closed mouth, crooked-jaw, Melanie Griffith thing going on. My first impulse was to blurt out, "How the hell do you know what he had or didn't have to live for? How do you know what he valued? What makes you think that you can even begin to understand--let alone judge--what he did?"
Of course I kept my mouth shut. I took my appointment card and barged out the door into the snowy, wet spring morning.
People just bug the shit out of me lately.
Monday, May 5, 2008
Sunday, May 4, 2008
Not all women doctors get it, either, but at least they're able to conceptualize the problem on a personal level. I said not all, though. Sometime in the 1990s, my mother sent me a book. The author was making the rounds on public television where she was espousing Women's Bodies, Women's Wisdom: Creating physical and emotional health and healing by Christiane Northrup, MD.
My mother sent me the book and said it was just what I needed. Two other people had recommended it as insightful and empowering. On a Saturday night in the summer, I sat on my back porch and started to read. I read Northrup's case studies of women who suffered with undiagnosable abdominal ailments, periods out of control, and recurring infections. We have the power to make it stop was her message. Oh, really? Obviously, I had been trying, so what was Northrup going to tell me that was new? What, indeed.
In the case studies, Northrup pointed out again and again that we just had to want to get better. Our maladies were really just the result of our own out-of-balance lives, our deepest intuition we were choosing to ignore. Break up with the boyfriend who doesn't support you and the menstrual pain will stop; bring your life back down to size and abdominal pain will follow suit; address your inner demons/trauma/career choices and your body will stop expressing its distress through your reproductive system.
The message was clear. Despite my lifestyle change, avowed singlehood, ambition, and attempts to get answers, Northrup was telling me that my pain was my fault. It was the result of my subconscious attempts to sabotage myself. My pain was there because I wasn't trying hard enough to address my deepest emotional pain.
Fuck that. Anecdotal case studies without solid science just pissed me off. It seemed like Northrup had found people whose situations proved her point instead of finding people and then finding out what the point was. I closed the book and threw it in a box, where it still sits today, more than a decade later. It is not my fault. I've been known to achieve some formidable accomplishments, but not even I can spontaneously conjure up parasites in my vagina. I wouldn't even know where to start.
Here is the first paragraph from Amazon.com's summary: Quite possibly every female over the age of 12 will find this huge book enlightening, pain saving, and perhaps even lifesaving. Think of it as a much more empowering and holistic Our Bodies, Ourselves...In Women's Bodies, Women's Wisdom, she covers the treatment of many physical concerns--among them PMS, menstrual cramps, breast cancer, fibroids, endometriosis, infertility, depression, childbirth, abortion, cystitis, and menopause--explaining how many of these physical problems have roots in emotional upsets. For example, a woman who is unhappy with her marriage may be infertile because deep down, she knows that her husband is not the right man to have children with; a teenager who has cramps may be having problems accepting society's expectations of her as a woman.
A woman with chronic pelvic pain may actually be of sound mind and have a medical condition, Christiane.
I can only imagine what she'd have to say about bipolar disorder. Maybe she's a Christian Scientist. Maybe she's a Scientologist. I wonder if she knows Tom Cruise?
I digress. All these years have passed, and my pelvic pain has never gone away. I don't remember what intimacy is, because my husband and I gave up on it quite some time ago. If you were counting in days, it would be in the many thousands.
To my benefit, I have a good gynecologist. Actually, she's nurse midwife, and I chose her for just that reason. Nurse midwives are excellent listeners who have a certain appreciation for a woman's pain. They have a refreshing philosophy about women's health, and they do not believe that any degree of pain is normal or should go unacknowledged.
Jessie the nurse midwife has been trying to get me to go to a urologist for years. I never went because I felt that after so may times being told there was nothing wrong with me, it wasn't worth the embarrassment or the money to see a specialist--especially a specialist whose specialty I didn't really understand.
Jessie and I talked a long time about my pain. She asked about my bipolar and inquired as to why I had decided to pursue treatment. I told her that I wanted to stop the pain, the discomfort, the arduous climb each day had become. I also said I wanted to stop being a burden to those I loved and a nuisance to everyone else. After my last heart-to-heart with Jessie, I made the appointment with the urologist.
The doctor is a woman and she is consistently voted by her peers as an outstanding practitioner--top three in the city--year after year. She is in her 50s, crisp, business-like, and full of information. She is a teacher and it shows. As she performed the most vigorous pelvic exam of my entire life, she talked nonstop about what she was poking around for. At one point, I cried out and said, "You know, that's gonna hurt for days." She told me that wasn't normal, but she knew why and what we were going to do about it.
"May, you have three things going on, and any one would have had most people in here a long time ago. You're right that when this started, docs didn't know what it was, and even if they did, there was no treatment. Most of what I know about this I've learned in the last 12 years."
"First, you have Interstitial Cystitis, what we now call Painful Bladder Syndrome. You very likely have a lot of scarring in your bladder wall, which causes pain and stops the wall from expanding properly. This is triggering another condition called Pelvic Muscle Floor Spasm. This condition is not widely understood, but we know it's painful and once it's been activated, it becomes easier and easier to trigger. Now, the third condition is actually quite rare, but you've done an excellent job of documenting your symptoms and the course of your disease. This is something that usually comes about as the result of a difficult childbirth, or injury to the lower back, pelvis, hips, or legs. I know you said you've never had an injury like that, but this condition is also seen in people who are or were high mileage cyclists. We do know for sure that you have to have a genetic predisposition for it. Do you have Irritable Bowel Syndrome?"
"Do you get migraines?"
"Hmmm. We know there is a connection. People with your condition almost always have migraines and IBS, but we don't know why. Nobody has figured out the link, only that there is one. It's all part of a big mystery wrapped up in the central nervous system. Even your shingles outbreak came from your central nervous system."
I was trying to follow along despite the now flaming pain in my female area. Damn that central nervous system. "Does my condition have a name?" I asked. "Yes. It's called pudendal neuralgia. It's going to take a while, but it can be treated." (Note: My brother also has this condition. He's a cyclist.)
So, here I am with three diagnoses and three more prescriptions to my name. First, Lyrica, an anticonvulsant used for neuralgia. It is advertised as a treatment for fibromyalgia, but it was actually developed to treat diabetic neuralgia and....tad dum! Shingles pain! I have nothing to lose by taking this one.
The second medication is called Elmiron, and its sole purpose is to recondition the bladder wall in patients who suffer from Interstitial Cystitis.
The third medication is hydroxyzine, an antihistamine that calms the bladder's reaction to irritation. Perhaps it will address my springtime allergies, too.
I also need to undergo physical therapy. This will be a type of trigger point therapy performed by a specialist. I looked it up and this therapy is...internal. For a moment, I envisioned a scene from the movie, The Road to Wellville, wherein women shed their malaise after "internal manipulation" at the hands (literally) of Dr. Spitzvogel. I can't explain more; you'd just have to see it.
The last thing I mentioned to the doctor was that I was going home to sit on an icepack. She handed me some photocopies and said, "There's a better way. Read this and take care of yourself."
One of the handouts included instructions for dealing with post-exam pain. Advil...blah, blah, blah...no caffeine...blah, blah, blah...condom, KY, freezer...What??? I went over that part again: Fill a condom with KY jelly, tie it off and freeze it. Insert the frozen condom into the vagina to ice and soothe the sore area. Oh. Oh.
Oh, it was brilliant. Of course. It would be much more effective to use this item than an external ice pack. But what was it called? Jelly ice? Cool condom? Crotch-cicle? Twatcicle? Somebody needs to perfect this and patent it. I wish I had thought of it--or at least heard of it much sooner.
This latest bout of health news has me dragging. More drugs. Therapy. More doctor appointments. No real immediate relief. Continued chronic pain. Drowsiness from medication side-effects. Enough already.
I have enough health messes going on iin my one body for an entire village to bear. I have far more illness and health-related quirks than one person should ever have to handle. There definitely needs to be a new policy, and I vote for a one-person-one-illness world. That seems fair to me.
Excuse me now while I fetch my very special frozen treat.
Saturday, May 3, 2008
It seems to me that with almost seven billion people on the planet, it is flat-out unfair for any one person to be afflicted with more than one major illness. I vote for even distribution of malady. We would all cope better and perhaps even cultivate some compassion within ourselves. It would also prevent people like me from having to manage multiple health issues, especially when there is no energy left for even just one more thing.
How I came to this train of thought is actually a twenty-two year journey. As I look back, I can see how the problem I am dealing with now has affected my life and emotional health in ways I never could have imagined. It took having shingles to make me realize that I just don't want treatable pain to be part of my life anymore.
I tried to get help. I tried for twenty years, unsuccessfully. It was frustrating and humiliating.
Let's go back to the 1980s. When I was in my twenties, I had a healthy sexual appetite. I liked sex, I just didn't have much luck finding the right people to have sex with. When I was sexually active, there were long periods of downtime because I got hit repeatedly with an onslaught of yeast infections, urinary tract infections, bladder infections, and vaginal irritation. I felt like I had my own regular schedule at Planned Parenthood, which was my version of a primary care physician.
I found that over time, it took less and less sexual activity to make my girly parts go to war with the rest of my body.
Eventually, I started getting hit with infections for no apparent reason whatsoever, even when I was not sexually active. I eventually had a steady boyfriend who knew about my situation and was somewhat tolerant. He had a BS in biology, so he understood that different people had different tolerances for physical contact with substances not produced by their own bodies.
That tolerance started to wear thin, especially when I came down with Trichomoniasis--not once, but twice. This tested our relationship because when my doctor made the diagnosis the first time (and let me look in the microscope to see for myself), he also told me my boyfriend had to be treated, too. He told me Trichomoniasis was transmitted sexually, and the only way I could have come down with it was through sexual contact. I was appalled. My boyfriend wouldn't cheat on me. He wouldn't.
My boyfriend was not pleased. He wasn't mad at me, but he was indignant when I suggested I had contracted the parasite from him. We worked through it, took the medication, and moved on. And then it happened again. I was suspicious.
I had changed doctors by then, and this time, the new doctor was deaf to my protestations regarding my boyfriend's fidelity. No matter how fervently I insisted my boyfriend wasn't sleeping around (and I'm still sure he wasn't), the doctor just shrugged it off and wrote a prescription. The boyfriend was furious that he had to take medication again. He felt that I had somehow brought this down on both of us.
After we broke up, I had one brief relationship, and then took a break. Some might call it a dry spell. Some might say I was a born again virgin. I didn't have sex again for almost four years. About a year into my celibacy, I started getting infections again. Bacterial vaginosis and gardnerella were among the worst, but it was the recurring bladder infection issue that was driving me into a deep depression.
I started to be depressed all the time. Triggered by my age, life stress, and chronic, inexplicable pain, my first notable bipolar symptoms began to present themselves, and it was frightening. I saw a gynecologist and he told me to change my laundry detergent, change my soap, wear loose clothes, wear skirts, avoid sugar, alcohol ,and caffeine, pee after sex and rinse/pat dry, exercise, lose weight, manage my stress, consider therapy. His thinking was that I was just so neurotic, I was knocking my body's stasis out of whack. Ah, it was my fault.
I found a different doctor in the same practice who got to know me, and I think he even believed that I was not doing anything to bring the wrath of the crotch gods down upon me. Eventually, though, he had to admit he couldn't figure out how to stop what was happening to me. Very sympathetically he said, "I'm not saying there's nothing wrong with you; I'm just saying that medical science hasn't caught up to where you are, so there's no way to diagnose or treat you at this time." Kudos to him for being able to admit being stumped and to do it without blaming the patient for her problem.
I didn't go to a doctor again for years, and only then because, after having been infection-free for some time, I woke up one morning with my reproductive system on fire. That afternoon, I saw a gynecologist who immediately diagnosed me with Trichomoniasis, gardnerella, and bacterial vaginosis. She said, "This is really bad. You must be very uncomfortable, if not in agony." She said my partner would need to be treated, too. I blinked, thought, and said, "There is no partner."
The doctor looked puzzled. She asked, "What do you mean?"
"There is no partner. Not only am I not in a relationship, I haven't had sex in years. I just woke up with this today. Maybe you can explain to me how one gets an STD when there is absolutely no S and no T. At all."
She looked skeptical. She didn't say anything for a long time, and then she said that there had been some documented cases of nuns who had been diagnosed with Trich. She wrote a prescription and that was it--it was like an alien abduction. There had been reports, but as to their validity...
I decided to stop going to doctors. My moods were erratic, and I started to cry under normal stress. I ate too little and drank too much. I loved to be drunk because when I drank a lot, I didn't feel bad anymore. During the day, I was hardworking, very busy, bright, professional. I was also profoundly sad. My friendships took a hit and my personal life started to unravel. I was very lonely.
It seemed to me then that the only solution was to adopt a policy of clean living. I cleaned out my kitchen and reloaded with fresh, healthy, crap-free food. Everything I ate was weighed and measured. There was no alcohol, no sugar, very little fat, no junk. Exercise. I had a nice bicycle that I had not ridden more than five miles in the four years I had owned it. My daily rides grew to be the highlight of my day, and I racked up hundreds of miles per month. They were hard miles, too, ridden in the steep, hilly terrain along the New York/New Jersey border and west to Port Jervis.
I lost 25 pounds in four months.
Eight months later, I had crippling abdominal pain every day. It was time to see a doctor again. This time, I was diagnosed with two things: Ovarian cysts and interstitial cystitis. I was alone in a new city, in a much bigger job, and I was scared. My doctor told me to stop with the cranberry juice--it was making things worse. She put me on the Pill to control the cysts, and said there was no treatment for interstitial cystitis. Even celibacy wouldn't necessarily keep it away. Was I doomed to be in pain the rest of my life? It certainly was starting to look that way.