Saturday, October 18, 2008

As I write this, the screen is swimming in front of my eyes and my head is pounding, but I'm so glad to be in my house, in my purple velvet desk chair, able to put my fingers on these clacking keys. I was in the hospital Tuesday-Friday--not how I intended to spend my week, but life always has a way of surprising us.

I can't remember whether I've mentioned this on my blog before, but every few months (sometimes longer, sometimes shorter), I have intense vomiting episodes. They start off as a subtle pain on the left side of my belly, and quickly grow into doubled-over pain that comes and goes intermittently, like labor. After a couple of hours of this (along with full body sweats and tremors and the deep desire--every time--to take a hot bath, even though it doesn't help), I'll start to throw up, and it doesn't stop until I go to a doctor's office/urgent care for a shot of Phenergan (it used to be a shot of Compazine until I had a crazy distonic reaction to it that made my lower jaw shoot to the side and get stuck there). No one quite knows what causes this vomiting--it may be my Acute Intermittent Porphyria. It may be abdominal migraines. It may be Cyclical Vomiting Syndrome. It's been happening for 12 or 13 years, but no one's been able to pin down the cause. Whatever it is, though, this time felt different. The pain was more violent--it seriously felt like someone was trying to saw me in half--and the vomiting didn't stop, even after two shots of Phenergan. The urgent care doctor wanted to send me by ambulance to the ER, but my sweet boyfriend Michael drove me instead (you know a guy is built of good stuff when he is willing to clean out your barf bowl.) In the ER, they gave me a dose of morphine for the pain (man, I can see why people get hooked on that stuff) and did an abdominal CAT scan that showed a possible obstruction, so they admitted me to the hospital, where I had a few days of tests and IVs before they let me go, still not knowing what causes this; the obstruction and "bowel thickening" they saw somehow disappeared after the attack was over, and the only thing that showed up on other tests was the fact that I'm anemic. I'm feeling completely wiped out now, but much better than I was, and very grateful to be home and able to eat again. I have to take a few more tests as an outpatient (including swallowing a pill-like camera that will take pictures of every inch of my digestive tract--I'm a bit nervous about swallowing the thing, but think it's a super cool technology. My sister said it's like the Magic School Bus!)

My time in the hospital was boring and uncomfortable--for much of it, I was too zonked to read--but there were moments of grace. Visits from friends and my parents (and of course my lovely boyfriend) helped so much. So did the sweetness of my roommate, who was recovering from a mastectomy. On the day that I was allowed to eat again, my breakfast tray never arrived. "Would you like some fruit?" she asked from behind her curtain. Of course she couldn't have known how important fruit is to me, but it felt like a profound blessing. For her, recovering from something so much more severe than myself, to be so generous and thoughtful, moved me tremendously. I got an email from her today and learned that she has put me on several prayer lists. In return, I ask that you please send good energy to Lee for a swift and full recovery (and to my student Gloria, who is just beginning her journey with breast cancer, as well.)

One thing that blew my mind was the fact that my gastroenterologist studied with the gastroenterologists in Chicago who treated me when I was ill as a teenager with what at the time was diagnosed as Crohn's disease. I haven't quite processed what this means to me fully yet, but it did help highlight an important contrast for me: when I was sick as a teenager, the illness became the center of my life. It was my source of identity, my source of purpose. I let it define me. Being "the sick girl" made me special, kept me safe. I no longer have that relationship with illness. I see myself as a healthy person. Illness, when it comes now, is just a blip, an inconvenience--it's no longer who I am. I am very grateful to have made that shift.

Of course I also want to look at what illness can mean. I think stomach issues come up sometimes when I literally can't stomach something, and of course there is much in the world I can't stomach right now. I just have to remind my body it doesn't have to take on the weight of the world. In the hospital, my friends gave me a card that says "Things to do today: inhale, exhale, inhale, ahhh." "These are your instructions," said Nancy, and I'm trying to follow them. I have so much work to catch up on, but my students and administrators are all being patient and understanding. There will be time to get up to speed on work, on my mountain of email--for now, I keep reminding myself to rest and be gentle with myself, to breathe in, breathe out, to try to let go of all the lingering tension in my body. Even writing this blog post is taking up more energy than I probably should be expending at the moment.

I hope I will be up to traveling to Toronto this Thursday. I'm supposed to represent CODEPINK at the Mothering Movement Embedded Conference next weekend and want to be able to give my presentation the oomph it deserves (plus I want to be able to take full advantage of the time with my sister, who lives in Toronto.) I'll keep you posted, and hope that everyone reading this is staying healthy and happy during these trying times. Toward that end, I am going to lie down and close my eyes. Inhale, exhale, inhale, ahhh...

5 comments:

Rachel said...

Gayle

I never knew about this until now! Sounds pretty intense - and painful! Good thing that Mike is taking good care of you - when I met him last July, he gave me a very good impression.

Take good care of yourself - and I hope you do get to speak out in Toronto. Your work is more important than ever, now that the Canadians have given the W puppet, Stephen Harper, an even larger minority.

I am still stuck in Seoul, and expect to be here for a long time, though it looks like I will have to return to California for a few days to help out with work (and to vote for Obama and against Prop 8, of course). I am hoping that when my business back home is over, I can come back to Seoul with my infamous pink miniskirt suit, to carry on the spirit of CODEPINK.

Rach

dmccafferty said...

Poor Gayle! I'm so sorry to hear this. Feel better soon. :)

gayle said...

Thanks so much, Rach and Dominique! I'm doing better and slowly regaining my strength. I should be able to make it to Toronto--yay! I'm glad you'll be coming back to vote, Rach, and love thinking of you returning to Seoul with your pink miniskirt suit!

xoxo
gayle

Anonymous said...

Hello Gayle,

I ended up reading your blog post because it came up in an email news alert that I get for articles about porphyria (which I was diagnosed with and can sympathize with your abdominal pain and vomiting). I would share my story, but it is an ongoing mess of bizarre things I will never understand.

Ummm...after reading your post, I have so many questions. My first question, has any doctor ever explained to you what acute intermittent porphyria is or the symptoms?

What you are describing is what a majority of acute porphyria patients suffer from and I cannot say I am shocked that physicians are not putting 2 + 2 together. When were you diagnosed with porphyria?

It has been my experience that the ER's are NOT good at testing for porphyria (which costs less than other common tests like CT scans), so this would make sense why nothing seems to jump out at them on common tests.

Well, I could go on with a thousand questions, but my main concern is that you have a previous diagnosis of a dangerous disease and it appears it is being overlooked or disregarded all together.

Just to throw in my two cents, the next time this happens, it would not hurt to have something in writing (like a lab order) from your doctor that requests certain labs be done when you are in this condition and before any IV's are started (glucose apparently could compromise the test along with a thousand other things like light itself). One test is a urinary (24 hour they prefer) for porphyrins and the other is called a PBG or porphobilinogen. NOT PBG-D, which is different.

I feel terrible that this has happened to you a few times. It actually makes me angry that you already have a previous diagnosis of porphyria (which is well known to cause vomiting and severe abdominal pain)that is possibly being overlooked.

When I was diagnosed, I was told NOTHING except to watch a movie about King George and the rest I had to figure out the hard way.

Don't depend on the physicians for too much information in this area, seriously. The lack of awareness of this disease is sickening, especially considering it has been around for so long. The problem is that physicians are taught that they will never see a case of porphyria, so imagine what that means for each patient. There are medications that are potentially fatal for porphyria patients and some of them are very common meds like "erythromycin" and others.

Like I said, I could go on...

Please take it easy and read up on some of the things that might exacerbate porphyria and maybe you can pinpoint what it is that might triggering such symptoms.

Angelique

angelique(at)porphyrins(dot)(org)

Quit Bloglin' Me said...

Hi Gayle,
Sorry to hear about your belly blues. Doesn't sound fun at all.

Just for the record, our Stevie may have gotten a larger minority than he had, but that's in part thanks to the voting system we have (and to the total lack of serious competition in the leader department by the other parties). He actually got just under 38 percent of the total votes. Oh yeah, and only 59 percent of eligible voters actually voted. Everyone I know is sick about the whole thing. Cost to taxpayers: $300 million. I'm relieved he didn't get a majority; that would have been ugly.

I'm keeping my fingers crossed that you guys are going to do better this time around and will be glued to the TV on Tuesday.

Linda
xo