When the brand means the brand

Let's consider brands, not as in corporate branding or even personal branding, both kinds ubiquitous in this Age of Labeling. (A student once asked me if he published in a low-level magazine, would that damage his brand?)
Let's talk about Effexor, the brand. There's a debate about whether there's a difference between generics and brands. They're supposed to be the same, right? But there are always some differences. If you want to read some patient testimonies, you can go here. The FDA says there's no important difference between brands and generic.
All I can say is that one kind of generic Atarax helps control my itching and one does not, and one brand of generic Buspar (with the rounded corners) helps with my anxiety and one (sharp corners) does not. I'm a sensitive sort. The FDA says that people might have a relapse (of depression, of seizures, of ulcers) that just so happens to occur at the same time that a switch to the generic occurs, and they'll blame it on the generic. But I swear that a recent switch to generic Effexor led to "breakthrough" weeping twice. In cases where the drug has an effect on emotions, it is impossible, I think, to prove that there's a difference. There's no way that you can compare yourself to yourself, except if you're living in Groundhog Day, and even then the outside factors shift each day.
This is why I paid nearly $100 today to Osco Drugs so that I could get a week's supply of brand-name Effexor so that I could compare myself to myself on and off the brand.
What happens if I find there's a big difference between the generic and the brand? Then I have to appeal to the insurance company, and last time I did this, headquarters misplaced my paperwork and then refused to allow me to buy the brand name for the generic price. Eventually I got off the drug because of news that it interfered with Tamoxifen.
Tonight I was riding my bike back from the Y and thinking how much I felt like myself. Which is a slippery slope in the creative nonfiction biz, because the Weltanschauung in academic/professional circles is that everyone has personae and you can't "be yourself" in your writing because there is no consistent self. I do remember reading an advice book or essay when I was young that attacked the hoary notion that you should "be yourself," asking in so many words, Who is this vaunted self? and arguing that our selves are not yet formed in teen-age-hood and that we should conform and be tactful. I've tried to find the quote in How to Get a Teen-Age Boy and What To Do With Him When You Get Him, but all I found is that the author died of cancer in 1995.
I remember reading Peter Kramer's Listening to Prozac where he talks about a patient who says she feels more herself on Prozac. Commentator Sherry Turkle had this to say about the notion in Life on the Screen: Identity in the Age of the Internet, published 16 years ago:
If a patient on the antidepressant medication Prozac tells his therapist he feels more like himself with the drug than without it, what does this do to our standard notions of a real self? Where does a medication end and a person begin? Where does real life end and a game begin? Is the real self always the naturally occurring one? Is the real self always the one in the physical world? As more and more real business gets done in cyberspace, could the real self be the one who functions best in that realm?
All I know is that I haven't wept since Tuesday--this "I" being the self that moves in the world and the self that stays at home.

(Illustration: I Am Half-Sick of Shadows," Said the Lady of Shalott by Sidney Harold Meteyard. 1913. Oil on canvas 30 x 45 inches. Private Collection, Europe [as of 1985].)

the doom of it

B reminded me that when her physical pain was so great years ago, she had told me she thought of suicide, and then later, maybe months or years later, I'd said, Aren't you glad you didn't do it? I didn't remember the conversations at all. I think of Spalding Gray every time I have the attack of itching/stinging. I know why he did it. I can feel a parallel to what caused him to go over. I know what pain or discomfort (discomfort: such a plush, seemingly innocuous word) can lead you to do. Just to stop it. All you want is to stop it. I cannot stop weeping. I wept Friday because a medical resident smiled her way into the exam room, and I told her, I didn't think residents bothered me any more, and I was embarrassed that they still did. I feel attacked. I feel stripped apart. I feel taken, taken brutally, by surprise. I cannot believe my hyperbole. Many many years ago in an interview for an internship, I was shocked to be told that the length of the internship was not what I thought. To be told differently than what I'd assumed--I was shocked, embarrassed, into gaping silence. Because the world was not the steady thing that I thought it was. Or rather, not the steady thing I knew it wasn't, but needed it to be. Then again, all this, this being deeply felt despair, deeply felt sorrow, could be caused by a switch from the brand Effexor to the generic capsule. And last time I filed for a switch back from generic to another brand name medicine, the insurance would not allow. Not allow. To be boxed in. To have no choice. My father would say, Only a fool is happy all the time. He had no idea. No idea of daily despair. Of the depths. How bad it could get. There was only unhappy or total happiness. I didn't even hope for total happiness. I wouldn't have bothered to hope for it. Total happiness wasn't necessary. I agreed with him on that, I didn't demand such luxury. All I wanted was to be delivered from the darkness. To live in the world the way I imagined a normal person would. I knew that I might not receive this award or that one, or be accepted into the ivy league university I thought I deserved. I did not demand or crave a life that consisted of always winning. All I wanted to was to be released from the invisible choke at my neck. To start out looking the morning straight in the eye. On a level playing field, you could say. As if there were some guarantee from our alleged Creator that we would not feel each day as if life were against us.

To read about how Prozac changed my life, click here.


This morning my hematologist Dr. Z called the Quick Dermatologist and got him to agree to increase my light therapy to three times a week. She said that I needed to see him quickly next time I was in Phancy for phototherapy. Then Dr. B himself called me and said he would increase the frequency and duration of the light therapy. He said that his office gets 200 calls a day, that he's short dermatologists, that in 10 years 35 dermatologists have left the practice, that there's a nationwide medical dermatology shortage because everyone wants to do Botox, that no one wants to live in Chicago because it's too expensive. So, hear ye hear ye, skin doctors of the world: Come to Chicago. It's cheaper than New York. He was going to prescribe doxepin, then I asked what it interacted with, and, alas, it interacts with parts of the Cancer Bitch cocktail.

So wherever you are, raise a glass to Dr. Z, hematologist extraordinaire, human being, researcher and newlywed.


Here's a recent article on the shortage, which doesn't mention cosmetic dermatology.

A 2005 article in non-scholarly magazine for dermatologists shows that the number of dermatology residents is increasing, but that the specialists are not evenly distributed around the country; there aren't enough dermatologists in, say, rural Mississippi. It doesn't mention the fancy part of Chicago.

The Suspense Builds...

This is the fax I sent to the Fancy Dermatology Dept. today. I succeeded in getting an appt. Sept. 1 with another derma on the staff. But that's a long way away, counting in itch-minutes. This afternoon my hematologist said she'd call the dermatologist and see if she could get help for me. There is nothing stronger than Atarax, she said, except Interferon injections, which I don't want to start. She also told me I could take two Ataraxi at a time, assuming these are 10 mg. tablets. I looked and I have 25 mg. tablets.
Oh well.

To: Dr. B, Nurse R

page __1_______ of _____2_____, including cover page

Hello—I’ve left messages yesterday and today because I’m been suffering from severe itching and I believe that you can help me. It is frustrating not to be able to make an appointment or to talk to the doctor.

I have severe itching caused by my polycythemia vera. It had been under control w/ 24-hour antihistamine and hydroxyzine, and two sessions of phototherapy a week, up to 6 minutes at a time. Before, it was 3X week. The last dermatologist I met w/ was Dr. A, because it was too difficult to get an appt with Dr. B.

I had a fellowship in Western Mass from mid-June to mid-July, and found a dermatology office there where I had phototherapy 2X week, building up from 3 minutes to 5.

Mid-July traveled to New Hampshire and Maine, where it was hot and humid. Two horse flies bit me, which triggered severe itching all over. Despite antihistamines, the itching continued, probably exacerbated by severe heat, humidity, and high mold counts. (I'm very allergic to mold, but never had a skin reaction from it before.) I returned to W. Mass. for more light therapy, which helped some.

When I returned to Chicago in late July I was somewhat better, and then worse.I had to begin my phototherapy at square one, starting with 37 seconds/session, twice a week. This Saturday I had terrible itching after riding my bike about 30 minutes, and hydroxyzine helped for only a little while (on top of 24-hour Allegra). Sunday I stayed inside all day and as soon as I walked outside, I would feel itchy. I've called Dr. Brieva a few times yesterday and today, leaving detailed messages that were not relayed in their entirety. I unfortunately missed a return call from Dr. B's nurse, R. The problems:

1. Phototherapy protocol is that after a gap in treatment at Northwestern, the patient starts from square one--getting phototherapy for only 37 seconds at a time. The five-minute sessions in Mass. are not taken into account because every machine is different and they can't be compared. Are there any exceptions to this? Can I get a higher amount of light because I’m suffering?
2.I can’t get an appointment w/ Dr. B until Sept. 24. Because it is hard to get an appt with B, I saw an associate of his, A, last time. She's gone now, on a fellowship, and I suppose she has no prescribing power at Northwestern at this time. Or does she? Or is there another doctor I can meet with immediately?
3.I left two messages for B yesterday (Monday). I asked for an appointment, to talk to him, for a prescription for 3X week, and whether there was anything stronger than Atarax. The nurse called back today, for a few moments when I was away from the phone, telling me he would have to see me before changing the phototherapy frequency. I would be happy to see him but he can't see me until Sept. 24.

I would like, at least, to talk to Dr. B on the phone about having longer phototherapy sessions and more often. I’d also like to know if there is an Rx that is stronger than Atarax.

If this is not possible, I’d like a recommendation for a dermatologist in the Northwestern system who is easier to get in touch with.


Will it never stop? the annals of bureaucracy

When we were in southern Maine in July we walked along the beach, got our legs wet, rinsed off, then started back up the road to our motel. This was during a nation-wide heat wave, and thus the cool temperatures that we had been seeking on the coast had eluded us. They were not within reach. The cool temperatures taunted us. From a large distance. So large that we did not know where these increasingly mythical cool breezes were. In Canada, maybe? Iceland? Greenland? Maybe. Or some place on the other side of the equator where it was already (or still) winter. But not in Ogunquit, where we had stationed ourselves, about a mile from the beach.

On the way back from said beach, two examples of what they call the official state l bird of Maine--the horsefly--bit my legs, one fly per leg, one bite per fly.
Both legs started itching and I started rubbing them against one another while I was walking so that I could scratch while going forward. And so for a few days I was itching all over.

This is not an unknown state for Cancer B(itch), whose polycythemia vera and accompanying itch have been documented on these cyber-visible-non-dimensional non-pages. The aforementioned blood cancer causes the itch. It was first manifested as itchiness after showering. One woman, Cancer B(itch)'s temporary dermatologist in Massachusetts, told her this summer, had apres-bain itching before she could be diagnosed with polycythemia. Which gives one pause. To have a symptom of a disease before your body registers that you have the disease. If that wouldn't make a person crazy, I don't know what would.

A Personal History of the Itch until Now:
The itch is as mean as a horse fly. It causes all-over itching, even after benadryl, 24-hour antihistamine, gabapentin and aspirin. In the emergency room, she discovers Atarax, and swoons.
The Friendly Hematologist said we will have to try Interferon if we can't control the itch.
But then she tells Cancer B(itch) of a dermatologist at Fancy Faculty Foundation who specializes in skin conditions caused by non-skin-related conditions.
The Quick-speaking, Quick-moving Dermatologist prescribes phototherapy three times a week, which means that three times a week Cancer B(itch) stands naked in a tank that emits purple light, UVB rays, that are successful in calming the itch. She still must keep taking antihistamines.
After a year, another dermatologist in the practice prescribes the phototherapy just twice a week, because it is doing its job. Cancer B(itch) has built up her tolerance and practice so that she stands for six minutes each time in the tank.
Cancer Bitch goes to western Mass. on a fellowship, and locates a dermatologist who provides phototherapy in a little folding tank upstairs from his little cottage of an office. He believes in patient-directed care, and so Cancer B(itch) continues her phototherapy for five to six minutes at a pop (Fancy Foundation has failed to send her medical records, but the dermatologist trusts her), twice a week. Her itch is under control, with the light and the antihistamines.
After the fellowship, she and L become cool-seeking devices on their way to New Hampshire and Maine beaches.
Enter the horse fly.

Cancer B(itch)'s itching is uncontrollable, except when she's inside in the air conditioning. L originates a plan to return to western Mass. for phototherapy. They cross three state lines in one day.
She is light-therapied.
She is less itchy.
The dermatologist opines that there are new allergens in New England that are causing the strong reaction.
It is better back in Chicago. For a bit.

This Saturday she and L ride their bikes about three miles to a union picnic. Her legs are itching, though she's taken a 24-hour antihistamine. At the picnic, it's worse. There is no air conditioning available. She takes a generic Atarax and after about an hour, the itching stops. But gets worse later that day, despite Atarax, and throughout the weekend when she goes outside.
There are theories:
1. It's the heat.
2. It's the humidity.
3. It's both. Cancer B(itch)'s theory is that it is heat, as well as the humidity, which is a sign of, well, general wetness, which indicates lots of mold spores floating around, mold to which she is allergic. The allergy usually causes a reaction in her lungs but for some reason the reaction is going straight to her legs (unlike food, which goes straight to the hips--you knew that was coming) because her skin is now the weakest point. It is compromised.
She is afraid to leave the house. This is not agoraphobia. This is φαγούρα-phobia. She and L start to walk to the card store about five blocks away and they have to go back and get in the car. It is that bad.
And what makes this all worse is that at Fancy, the nurses have made her start her treatments from scratch, beginning at 37 seconds in the tank, instead of six minutes, because that's the policy, which is based on the theory that all light tanks are different, so you never know the strength of the one you used elsewhere. You'd think by now there would be ways to measure that.
And--she can't up her frequency in the tanks to three times a week, because the dermatologist prescribed twice a week. And they can't call that dermatologist because she's on leave. The end. You'll be back up to six minutes soon, the nurse says, though that isn't true.
The Original Dermatologist is very busy (though he is quick) and Cancer B(itch) gets an appointment with him in late September.

Finally today she takes bureaucracy into her hands and calls the Quick Dermatologist's office at Fancy, and talks to an overworked, indifferent worker who puts her on hold about seven times in the middle of conversation. Success is achieved in the form of getting the worker to agree to take a message for the Quick Dermatologist. This is so very different from the way things worked with the Massachusetts Dermatologist, who was casual about appointments and writes a health blog and majored in Comp Lit in college.

I know this account is tedious, so tedious that maybe no one will ever get to this line that acknowledges the tedium. My friend S is recovering from a hysterectomy and waiting to hear whether the nodes that were removed are cancerous. I apologize for telling her about my itch. She says no no it's fine it makes her feel more balanced in the world to hear other people's problems, makes her feel less that she's only thinking of her own ills. As Steve Goodman sang,

And it ain't too hard it to get along with somebody else's troubles,
They don't make you lose any sleep at night.
As long as fate is out there burstin' somebody else's bubbles
Everything is gonna be alright.
And everything is gonna alright.

Steve Goodman photo--he died of leukemia

Photo of black horse fly from here.