Monday, March 31, 2008

The lesser of two evils?

First, let me take a moment to appreciate the persons who came up with the concept of tagless underwear, tagless T-shirts, tagless camisoles, microfiber, and Gold Bond antiseptic wipes. Everybody say 'Hallelujah!' Hallelujah!

I'd like to ask the makers of Vicodin why it doesn't do anything for me. Am I immune to it, or is the pain that far off the chart? For a long time, I thought that bipolar disorder was the worst thing my body could come up with to do to itself. And then I got shingles. I have begged for deliverance from both.

Today I mulled over which is worse. If the doctor is right (and I hope he isn't), I have a strong possibility of being left with permanent nerve damage and postherpetic neuralgia as a result of the shingles. Then, there's bipolar disorder. If I had to choose one or the other, I think the BP. At least there are ways to manage that pain. It' easier to hide, and, I'm learning, something you can work through.

This other thing...It's a monster. If it does stick around, I'll be in trouble. I don't know how the stress of chronic pain--this pain--wouldn't eventually trigger me into a deep depression.

As a footnote, I am about to stress myself out into the stratosphere. Early tomorrow morning, I leave for a conference in New York City. The medications nauseate me, my body is its own portable torture operation, and I have to hare a room. If this doesn't trigger me, then I've proven the strength of my constitution.

I am so afraid of being stuck in my room, sick, that I bought a contract and wireless modem for Verizon Broadband Wireless service for my laptop. I wasn't planning on taking the computer until I got sick. I hope to be able to keep in touch while I'm there. This may be the only place I get to work out my "stuff."

For now, I just want to make it through that very long flight. Next post, East Coast!

Any other brain

It's 3:15 a.m. Vicodin with Tylenol is doing nothing. I should have remembered this from my knee surgery. I don't understand why people get addicted--it doesn't help my pain, and it just nauseates me somethin fierce. I am hot and sweaty.

Not even this could help me sleep through the pain.

I want to die.

Sunday, March 30, 2008

The sleeping evil

It's shingles!! God fucking damn it!!!

I am trying to think of a time I was this uncomfortable. Nope. Nothing.

I am leaving for a conference in approximately 48 hours, but according to the shingles timeline, I'm not even halfway through the episode. I am whimpering. I am close to tears. I am miserable. And sleep-deprived.

I called my co-worker/hotel roommate for the trip to make sure she has had chickenpox. She has, and right at this moment, she has poison ivy. The hotel is going to put a sign on our door "Danger: Cooties! Do not touch the guests!"

My nerves feel like they are in flames...

Saturday, March 29, 2008

miser somes

Ego sentio miser. Meus somes sino.

Whining doesn't sound so petty if you do it in Latin. After getting through a week that included a pelvic exam, two ours with a lawyer, the trans-vaginal ultrasound, the resentment necklace, and shopping for pants, it seems unfair that I find myself in my current situation.

At the beginning of the week, I realized I was developing a bad knot in the Latissiumus Dorsi muscle on the right side of my back. Instead of getting better, it has continued to worsen day by day. I've taken Aleve, used ice and a heating pad, consumed wine (what the hell?), and put myself through a long sequence of site-specific stretches again and again. Sometimes, my breath catches if I inhale too quickly. It's that bad.

Now, I have a high pain tolerance, and this by itself wouldn't bother me, but something else happened at the beginning of the week. What I thought was a hive appeared in the middle of my back and it itched like crazy. I managed to keep my hands off of it. As the week progressed, my hive-like bump grew into a constellation of large, red, hard bumps on a scarlet background. The itching is driving me insane, except now it has changed--the bumps still itch, but if I touch them, they burn like fire. My husband lovingly swabbed the area with a Gold Bond antiseptic wipe and followed up with a gel for poison ivy (but not without a running commentary along the lines of "Eww. Honey. That's disgusting. What is it?").

I went online to scope it out. My husband walked by and said, ""What site are you on...reallyscareyrashes.com?" I shrugged.

It's either bed bug bites (oh, please, no) or the dreaded Lamictal Rash (no, no, no, no...). Now, The Rash only hits about one in a million Lamictal users, but believe me, I am the person more likely to be that one in a million. I used to take time-released Xanex every day when my anxiety was off the charts. I had to stop because I started getting quarter-sized welts all over my body. It's an extremely rare reaction. Of course.

Of all of the meds I take, Lamictal is the one I am least likely to give up on easily. It is the glue that holds my meds together. It is the one thing that truly targets Bipolar I depression. Without it, the whole damn house of cards that is my BP medication cocktail will collapse dramatically.

In a better world, I would not need any medications. In a perfect world, I would not be ill. I hate having bipolar disorder. I hate the glitch in my brain that forces me to be ever-vigilant about every nuance of my health and mental state. It forces me to acknowledge my defect every single day. I want to go back to a life without medication, without weird physical blips, without worrying about whether or not my behavior is appropriate or reasonable.

Sigh. We, as humans, are capable of getting through so much more than we know. It's not until we are challenged, tested, and have our feet put to the fire that we truly know our tolerance for discomfort. Every day, I interact closely with people who have experienced horrors far beyond my comprehension. I have no frame of reference for their experience, yet I believe it to be tragic. They, on the other hand, believe that true tragedy exists in those who cannot find a reason worthy of surviving life's harshest blows.

Sometimes I wonder how ever made it this far, but I also have days when I wonder how I can make it one more step. I think about Karma and I wonder why I, as a person who has tried to be good and right and compassionate, still face weeks like this one, filled with poor health and intense physical discomfort.

I want a new brain, a new body, and a bit more strength to tolerate the challenges coming my way.

Friday, March 28, 2008

Totally random pictures

There is a lot I don't share in my blog. It's more an act of safety than privacy.
Here are some things I don't think I've posted before.

This is my dog. She's a purebred red and white border collie. She's insanely smart, a trait she uses to mercilessly manipulate my husband. I adopted her when I was at my lowest. I thought I was going to kill myself, but I wanted my husband to have something to buffer him from the shock. She has one blue eye and one brown eye.


We bought our house in 2004. It was a bit of a fixer-upper. The woman who lived here before us gave up on everything. She had bipolar disorder and she committed suicide in the house. My husband still thinks we should have had a shaman come in and sage away the bad energy. We still haven't painted or replaced the missing baseboards, but we've done a lot of other work. The latest project: Interior doors. They still have to be stained. The color will be a translucent pearl so they'll be light but the grain will show through.



You read about my cat Sophie, but I rarely mention her nemesis, Jake. He's big, he's mean, he's kept in line by the border collie.

I love orchids, and right now, all of mine are in bloom. Here is the inside of a phaelenopsis in my kitchen.

Here is a necklace I have named "resentment." Having seen both my pdoc and tdoc this week, (yes, along with the gynecologist, a lawyer, and the ultrasound tech), I can now process this. My mother demands that I make jewelry for her friends. Despite the fact that I've been feeling like crap, she saw no reason for that to stop me from doing her bidding. Really, I need a whole separate blog to deal with my mother-related shit. More on her later. I made the necklace and seethed through the whole process. I doubt she will pay me for it, even though she promised she would. Ha!



Here's another orchid.

Customer Service, Part XXIV

The following post is the transcript of my e-chat conversation with a Verizon customer service representative earlier today. The conversation was cut/pasted directly from the chat dialog box. God...help...me...

Please wait for a Verizon Wireless sales representative to assist you with your order. Thank you for your patience! A Verizon Wireless online pre-sales specialist has joined the chat. You are now chatting with Karen

Karen: Hello. Thank you for visiting our chat service. May I help you with your order today?
You: Hi, Karen. I'm thinking about getting a PC card. I see all the prices are for 2-year contracts. Can I get a card with only a 1-year contract? Where would the pricing for that be?

Karen: I'd be happy to help you with that.

WAIT 2 MINUTES

Karen: That's a great question. Is it okay if I take a moment to research that for you?
You: Sure. No problem.

WAIT 2 MINUTES

Karen: I will be right with you.

WAIT 5 MINUTES, remove bra without removing shirt

Karen: I'm sorry for the delay. I'll be right with you.

WAIT 3 MINUTES, file nails

You: OK

Karen: You can get a PC card with a 1 year contract.
Karen:You will just have to go to accessories.

You: I am there now, but I don't see where the 1-year pricing is.

WAIT 4 MINUTES, send email

Karen: Thank you for waiting. I'll be with you in just a moment.
You: OK

WAIT 2 MINUTES check email

Karen: Are you an existing Verizon Wireless customer?
You: Yes. I have a Family Share with 2 phones.
Karen: I will be right with you.
You: OK

WAIT 4 MINUTES, consider using the bathroom

Karen: Are you able to find what you are looking for?

You: Well, I'm not sure. I'm looking at wireless PC cards, but the prices listed are for 2-year plans, but I only want one year. I don't know what the price will be for any of the cards I see online then since they only show 2-year plans. I suspect that a shorter contract affects the price of the device (card).

WAIT 3 MINUTES, flip through cable channels

Karen: Thank you for waiting. I'll be with you in just a moment.
You: OK

WAIT 3 MINUTES try to determine plot of muted Spanish language soap opera

Karen: I'm sorry for the delay. I'll be right with you.
You: OK

WAIT4 MINUTES, update blog

You: For example, the AirCard 595 shows a price of $149.99 w/2-yr contract, minus online discount brings it to 99.99. But with a 1-yr contract?

Karen: What kind of phone do you have?
You: I'm not sure why that matters since I'm shopping for a PC card, but my phone is an LG something. Wait. I have to go get it.
You: LG VX8700
Karen: I am going to find you a PC card.
You: The PC card is for my laptop. I'm considering getting wireless service for the laptop for when I travel.

WAIT 3 MINUTES, inspect dog for ticks

Karen: I'm sorry for the delay. I'll be right with you.
You: OK

WAIT 2 MINUTES, wonder if bathroom is really an option

Karen: I am looking for a pc card that's compatible with your phone.

You: OK, but it's not for my phone, it's for my laptop computer so I can get wireless internet service in any Verizon market.

Karen: What kind of slot does your phone have?

You: My computer? It has everything. PCMCIA, USB, and slots compatible with all media.

WAIT 2 MINUTES, surf Sprint Cellular Website

Karen: Thank you for waiting. I'll be with you in just a moment.
You: OK

WAIT 3 MINUTES, Google search bizarre word search combinations


Karen: I recommend the Verizon USB 720 modem. Since your computer doesn’t have a standard PC card slot/express slot, this is an option that will work with your laptop and give you access to the Internet.

And that’s when I gave up. It was painfully obvious she didn’t know SHIT about the Verizon product or laptops or PC cards or the plans that go with them. Enough is enough. Was she unaware that we were using the Internet to communicate? I was utilizing the internal wireless modem on my very expensive, bells-and-whistles-filled laptop throughout the conversation.

You: Never mind, dear. I’m going to the Verizon store to talk to the people there. Thanks for trying, hon.

I disconnected from the chat, and a new window popped up, asking me to rate my customer service experience with Verizon. Well, I was happy to oblige. And then, braless and up-to-date on my blogging and email, I finally went into the bathroom and peed gratefully.


I will live another day...in pain

My labs came back. Physically and gynecologically speaking, I am normal, normal, normal. No diabetes, no cancer, no cysts, no endometriosis.

That is wonderful, buuuuuut... It means I have no answers, either. The pain is real, the puffy belly is real, and the fatigue is real. Sigh.

I was given a referral to see a urologist. The gynecologist made this same referral in 2005, but I never followed up because I was too busy dealing with my brain melting down and falling apart. First things first. I wasn't going to spend the money for the urologist if I was still mulling whether or not to commit suicide.

My suicidal tendencies are under control for now, so I've already called and made an appointment with the urologist. It's not until May, though. The current theory is that I have interstitial cystitis, a diagnosis from 20 years ago come back to make me miserable again.

There is no cure for it, and the diagnostic methods and treatments are harrowing in their unpleasantness. The dietary issues are beyond huge, and include no caffeine at all, no acidic drinks, no citrus, no spicy foods, no black beans, no canned soup, no peanut butter, chocolate, cheddar cheese, and no soy. That's like 90% of my diet right there. I'm going to live on lettuce, water, and eggs. Someone is destined to find me with my face pathetically plastered against the front window of the Indian restaurant down the street, drooling and hysterical from separation anxiety.

Beyond the discomfort, IC is also one of those diseases that 99% of the population either has never heard of or completely misunderstands what it is (or isn't). Kind of like bipolar disorder. I read recently that people who have brain-based illnesses are also more likely than other people to have disorders that affect the nerves and nerve endings in the lower torso/abdomen. I have IBS, so maybe there's something to that. Can't I get something normal and easy to explain for once--something that isn't inherently embarrassing??? Something that everyone can agree actually exists? For a short and absolutely excellent article/commentary on this, do read this piece from Salon.com! The author does a great job of explaining the politics of medical research, and why illnesses like this make people roll their eyes. Christ, what's next for me, fibromyalgia?

I must have done something really, really heinous in a past life.

Wednesday, March 26, 2008

You're going to do what to my what???

I went to the gynecologist today. It wasn't only time for my annual exam, but I wanted to ask about the abdominal pain I've been having. Oy.

They took a lot of blood with the intention of doing, among other things, a CA-125 screening--for ovarian cancer. I have to go in for an intravaginal ultrasound tomorrow morning. I've had this before, and it's akin to having someone push a condom-covered flashlight up your vagina.

The doctor did an pelvic exam (normal) and a Pap smear, and the blood tests include other things I don't remember.

It's just that I'm sitting here realizing I'm being run through a gamut of tests for...cancer.

Tuesday, March 25, 2008

The precious lost

I sat on the floor at Sitey's house, shuffling through immigration documents. As I filled out the state's required forms, I tried to make small talk with someone who doesn't speak much English.

I first met Sitey about two years ago, not long after she had arrived in the U.S. She was isolated on every level--linguistically, socially, and geographically. The other Bantu lived on the far, opposite side of the city. Most speak Maay-Maay or Kizigua, and socially speaking, the community functions as a collective unit.

As a Mazagway speaker, Sitey is in the minority even in this obscure Somali Bantu ethnic group. She is someone's second wife, a fact that came to light when she gave birth to a son a year after her resettlement. She will not say who the man is; the Bantu are afraid to admit their polygamy believing they will be arrested, even though these marriages are unofficial by American legal definitions. Still, human services would like to know so the fathers can be held fiscally liable for supporting their children.

Sitey is quiet. She is what is commonly known as a tough cookie. She has seen unbelievably horrible things. She has struggled to survive, to adapt, and to depend on no one except for herself. The other Bantu call her "crazy." In fact, she is stubborn and independent, even when she was almost catatonically depressed. In a culture where collective consciousness is more fact than fiction, Sitey is an anomaly and as a result, seriously misunderstood.

After five minutes on the floor, I realized my butt was wet. When I said as much, Sitey said, "Wet? Oh!" We both started to chuckle as we realized her one-year-old had left a puddle on the woven floor mat. Sitey shrugged her shoulders, and I wiggled to adjust my position. There's a reason all of my clothes are machine washable.

"Sitey, you have six children, yes?" Sitey leveled an expressionless gaze at me and said, simply, "No. Seven. Five here."

I waited for more. The living room was dark, blinds and curtains drawn against the sunny afternoon. Instead of traditional furniture, Sitey's living room was furnished in the style most familiar to her: A mattress on the floor, straw mats, and a small, tattered loveseat for the American visitors. I decided against the loveseat. If I am going to talk to someone about her life, a life that most certainly has seen trauma and loss, I prefer to share the floor.

"Sitey, tell me about your two children who are not here."

Sitey's two youngest sons rolled onto the mattress. Sitey reached back and pulled a coverlet over each boy and rubbed the baby's back as he drifted off to sleep. She looked back at me and said, "Kenya."

"Your kids are in Kenya? Why didn't they come to America?"

I could see that Sitey was weighing her words. With minimal English, the complicated story to come was going to require some advance planning. She tried to explain.

Sitey told me that when her village and home were attacked, she grabbed her youngest kids and everyone scattered. There was shooting--Somali soldiers, soldiers of fortune, were making their way through the Bantu villages, brutally raping, killing, burning, and torturing. Sitey ran for her life, assuming her family would meet up in the fields.

She was wrong. Sitey made it to Nairobi, then Tanzania, then back to Kenya. She moved from city to city, hoping to locate her children at an IOM, UN, or Red Cross facility. Eventually, she was forced to enter a camp, and although it felt like giving up on her kids, she checked into Dadaab as a UNHCR-sanctioned Refugee.

After three years in Dadaab, Sitey was moved, along with the entire Somali Bantu population, to Kakuma. Kakuma is an enormous, hot, dusty refugee camp in northern Kenya. Originally built to shelter Sudan's Lost Boys, the camp has been annexed several times to accommodate an ever-burgeoning influx of African refugees. A special section was built just for the Bantu.

Once Sitey and her four kids were housed in Kakuma, she set out to ask for help finding her missing eldest children. She said, "I see. They Kakuma, orphanage section. Not Kakuma Two. Not Kakuma Three. Kakuma--original--orphanage section. My two kid. I want they with me, but UN, State Department say 'No!'"

I asked why her kids couldn't be with her. She sighed a deep, deep sigh of frustration and fatigue. She explained and told me a heartbreaking story I have heard far too many times in my work. By the time Sitey found her children, all of her immigration and refugee resettlement paperwork had been filed, signed, sealed, and delivered. Once the petition goes through, the State Department does not allow amendments. Sitey was left with the troubling reality of having to leave behind the two children she had traveled all over central Africa trying to find. This left her with only one option--to petition for family reunification when she was on American soil, a prospect that is uncertain at best, and usually extremely protracted under successful circumstances.

Sitey's concern now was the mail. She can't read or write, but she understands what mail is and she knows that she hasn't received anything important in a very long time. She said she used to get mail from INS, but the letters have stopped. She doesn't know if that means that the petition has stopped, too, or if there is a problem with her mail, or if nothing is happening. She is frustrated and sad and I cannot help her. That makes me feel frustrated and sad, too.

Her youngest son stirred on the mattress and murmured. Sitey reached over, and softly clucked her tongue. She rubbed his back and pulled up the coverlet. Her face softened for the briefest moment as she rested her hand on her son's belly. Sitey's eyes found their way back to me.

I asked, "Sitey, how old are your children in Kakuma?" She didn't hesitate. "Now, 14 and 17." Then, silence as Sitey looked at her bare feet. We both knew what this meant. When her oldest child turns 18, Sitey can longer petition for reunification as a parent. The process will have to start from zero, and her son will have to petition for refugee resettlement as an adult individual. Except, right now, UNHCR and the State Department have shifted their focus, and the Bantu have slipped far down the list for transfer, no longer a priority in the politically-charged process of resettlement.

I wrapped up my interview with Sitey. She smiled. It was the first time I had ever seen her smile. She thanked me and thanked me for what assistance I was able to give her, assigning a teacher to help her with language and literacy. She reached over and shook my hand in the manner of a person who has been taught this gesture, something done for my benefit. It was awkward and heartfelt. I squeezed her hand and wished her good luck. I wished I had more, so much more, help to offer.

Sunday, March 23, 2008

Fame without fortune

Somehow, my husband and I got onto the topic of brushes with fame. It reminded me of celebrities I've met along the way, most of them before 2000.


  • Don King. I have a picture of us together, and he has his arm around my waist. People ask why I'm smiling so enthusiastically. He squeezed me just as the picture was taken, and it took me by surprise.

  • Bruce Jenner. Weird. I've never been so up-close to someone who had undergone so much plastic surgery. It was creepy.We were in a limousine for 45 minutes, so I had time to really scope out his face. Eww.

  • Emme, the plus-sized model. I was a client of her husband, and we got to be friends. I am so sad that they're getting divorced, but I have a feeling they'll both benefit.

  • Evander Holyfield. He has the biggest hands I have ever seen in my life. He shook my hand, and my hand just disappeared. He's severely dyslexic, which would have been helpful for me to know at the time. He's also incredibly kind and very religious. Somewhere in my basement, I have signed gloves and I couldn't care less.

  • Sara Hickman, my favorite singer. She gave me the longest hug I've ever had in my life.


  • Nicole Wood, Playboy Playmate. We had dinner together. I felt like an Amazon, a homely stepsister, invisible. The men couldn't stop staring at her, but hey, I've never experienced such outstanding service in a restaurant. Actually, I have, and the second time it was on my own merit as someone who had helped the owner in his first days in the U.S. I felt like royalty.

  • Pete Rose, disgraced MLB player.

  • Al Jarreau, singer. Friendy and gracious.

  • Robert Hays, actor (Airplane!), in a bar in the French Quarter, New Orleans.

  • Marion Barry, outrageous former mayor of Washington, DC.

  • Jerry Falwell, evangelist. Incredibly charming and disarming. It scared me after the fact.

  • Jerry Penacoli, TV Entertainment Reporter. Very nice guy. I used to research stories for him.

  • Nancy Glass. Bitchy diva, self-absorbed. Used to be on an Entertainment-Tonight-type TV show, and then produced her own shows. Brought her dog to work and insisted everyone feel good about it.

  • I have not met but have been in the same room with--twice--Ted Turner and Jane Fonda.
  • I went to a private party where the band was the Neville Brothers.

  • Greg LeMonde, champion bicyclist. What an incredibly, incredibly nice guy.

  • Christ Klug, Olympic medalist, snowboarding. He won the bronze only 19 months after undergoing a liver transplant. For someone who flies over the snow, he is very grounded and down-to-earth.

  • Billy Kidd, skier extraordinaire. He couldn't care less if you're a celebrity or regular person. He'll still help you find your way around the mountain, and he'll chat with you just as if he'd known you forever.

  • Dr. Kay Redfield Jamison. She's shy and she has the most incredible blue eyes I have ever seen in my life.

This a late addition that occurred to me weeks after I first posted this. I also met Al Lewis, otherwise known as Grandpa Munster. This was strictly by chance. In the spring of 1993, a friend and I spent a day in Greenwich Village poking around at the flea markets. I bought a rustic, willow twig arch entwined with dried flowers. On our way back to the PATH train, our conversation was interrupted by Al Lewis. He owned a restaurant in the Village (Grandpa's), and he was standing outside on this beautiful spring day. He came over to take a look at my willow arch and seemed genuine as he looked it over carefully and commented on how pretty it was. He was funny, smooth, and NewYork brash all at the same time. After our conversation, my friend and I kept smiling all the way to the train station. The following Monday at the office, I was actually able to say, "Yeah, my weekend was good. In fact, I met Grandpa Munster..."

I think I missed a few--writers, I think. I'll bet the only person on this entire list who remembers me is Emme.

Thursday, March 20, 2008

Addendum

I have been sick for the past two days. It's hard to describe. Deep, deep fatigue, constant nausea, lower abdominal pain (I feel like my uterus just turned into a brick), and alternating between being too hot and too cold. And I'm sensitive to noise. I have IBS, but this isn't that.

I went online to see if these symptoms might add up to something, when I came across a story from CBS News. It's about overweight people who have IBS. After extensive research involving 1,000 study participants, the results were clear: To avoid gut pain......wait for it......exercise!!

Damn. Nothing about the ice cream yet again.

Tuesday, March 18, 2008

That's not the cure I was hoping for

From the latest research files:
  • To stimulate your metabolism, exercise.
  • To help prevent diabetes, exercise.
  • To ward off depression, go outside and exercise.
  • To best care for your heart, exercise.
  • To mitigate insomnia, exercise.
  • To keep yourself alert, light exercise is recommended.
  • And, all over the news today, the number one way to prevent Alzheimer's disease: exercise.
So, when is vanilla-peanut butter-chocolate chunk ice cream therapy going to be prescribed? Really, we've waited long enough. The time has come.