If you have a chronic illness and the fallout from it, you know what it’s like to feel lousy.
And it’s a great thing when you have respite from the (not so merry) merry-go-round, sure. But with the blessed absence of symptoms also comes a low-level dread: When will I get sick again?
Maybe you will. Maybe you won’t. But if history is an indicator, you probably will. It’s a real fly in the prescription-strength ointment. You can’t ever really be free, not really.
And so it was that a wispy-but-dark cloud settled over my head in July because Symptom A appeared and stuck around long enough to make me worry. Then (because of worry?) Symptom B appeared. “It’s nothing,” I thought, and instantly began to think of everything I might have eaten or not eaten, done or not done to make this “nothing” happen.
Chronic conditions, especially those of the intestinal variety, are particularly cruel to the psyche. Surely it’s something you’re doing — or doing wrong — that’s making your condition worse. Eat more yogurt. Don’t drink any coffee, ever. Sleep more. Don’t eat eight hours before bedtime. Meditate. You’re not meditating? Well, there’s your problem. It’s as though an intestinal disaster and the management of the leftovers could be beautifully restored if one was more virtuous, sane, well-slept. No pressure, but you’re lazy/lacking willpower/something else or you’d feel better.
Yesterday I spent the entire afternoon into the evening reading books in bed, having tea, and telling my body, “We’re cool. There’s nothing wrong. See how we’re just lounging in bed and reading like there’s nothing wrong?” This is funny, because if I am lounging in bed and reading for hours, something is for sure wrong. I’m almost pathologically productive — until I’m not.
I feel better today, I really do. I think reading and resting helped, and besides, Symptom A has been less present, on the whole, for the last week. I’m sharing about it because I know there are readers out there who also suffer from chronic illness and/or conditions and it feels right to draw open the curtain to the non-emergency, non-total-regression kind of day that is normal for so many of us. I’m not going in for an iron infusion. I don’t think pouchitis is upon me. But I felt like crud, I have been feeling like crud in this particular way, worrying like crazy about it, and I know sometimes that’s true for you, too, but it’s not enough to talk about and worry everyone, right? I know.
Tomorrow is Sunday. If you need to, and you can, even for a little while, read in bed and have tea.
In May, the dull ache in my shoulder had gotten bad enough that I had to say something. It had hurt for a couple weeks and just when I’d think, “Aw, I’ll be alright,” I’d move it in some totally acceptable way and realize it was not getting better. Claus gave me a couple massages and that helped, but then he moved back to Germany and now what? I thought.
When I was working in Iowa, I saw my friend Julie, an orthopaedic surgeon. “Julie,” I said. “My shoulder hurts really bad.” She gave me some stretches to do and that helped, but then I went back to Chicago and now what? I thought.
Then a tiny section of my thumb went slightly numb. That was about a month back. Not numb exactly, but numb kind of. Then I woke up in the night from the ache. Then I realized when writing in my journal in the morning that my hand was not quite as strong as I remembered it being. Then, the last straw: the terrible ache extended to my upper arm and I woke up three times in the night from the pain. It’s hard for me to find a good position in bed at night. Okay. I call. It’s time.
Instead of taking the bus up to the hospital where I get all my glamorous medical care, I thought I’d try something else first. Because it’ll be my luck that I get an MRI and suddenly have surgery scheduled for next month. I’m good like that. I decided to get a first opinion and made an appointment at a chiropractor downtown. I’ve never seen a chiropractor before.
My step-dad swears by his; he’ll holler upstairs to me when I’m home at the house, “Mar! I’m headed to the chiro to get cracked! You need anything at the store, honey?” Mark’s back is considerably bigger than my shoulder and he gets good results, so why not.
It’s wild how divided people are about chiropractors. I wrote day before yesterday how I won’t comment on political issues on my blog; this includes my official position on chiropractic care. All I’ll say is that when I left, after stimulation nodes had been placed on my shoulder for 30 minutes, after the nice lady had made my spine do its best impression of Jiffy Pop, and after I opted-in for a 30 minute chiro-massage, my shoulder did feel better and I’m grateful. But I also emailed Julie; chiro or not, I’m going to get a third opinion. (The second opinion came from my neighbor; we were chatting in the elevator this morning and I told her about my shoulder. “Oh, just get a cortisone shot,” she said. “You’ll be fine.” Janine is a real estate agent and has nine earrings in her left ear.)
I took a picture of the chiro’s computer screen when she left the examination room. That’s my shoulder/neck x-ray. Isn’t it amazing? I’ve had a string of a few bad days this week and it was strange: when I saw my straight spine and that there wasn’t broken glass in my shoulder, I felt better. When you’re stressed about this or that, when you walk around with chronic pain and dread that it’s worse than you think, think on this: the back of your skull is lovely.
I’m back home in Chicago! Being in Iowa was great, but whenever I get back to the city, I realize how much I missed the pigeons.
There were so many errands to run. My main task was to go into Northwestern Hospital for an iron infusion. I’ve got another week from today. I’ve been getting cozy with these things since I basically ran out last year; aside from the weird stuff that likes to show up on my CT scans, I’m anemic. My hemogoblins have been hanging out at 9 out of the recommended 14, so I need Fe pumped into Me. I’ve also been eating nothing but filet mignon and steak tartare, naturally. Sometimes I’ll have a porterhouse. Maybe a fox or a deer, if they’re running around. Or your delectable neck, my pretty… Mua-ha-ha!
Getting an infusion of X or Y or Z isn’t that big of a deal. You go in, they stick a sharp object through your skin into your vascular system and gravity assists in transfusing liquid into your bloodstream. I sat in a room with many people getting various intravenous medicine; my infusion took a little over an hour. I spent some time on Instagram, I looked through some papers. The nurses were nice.
There were numerous occasions over the course of 2011-2014 when I would take the Michigan Ave. #147 bus to that hospital from my home, sure that whatever was wrong with me was bad enough that I’d probably be admitted when I got there and I was usually right. I learned to pack a bag and turn off the lights before I left. If you’re going to be admitted, you might not be back for a long time and you’re gonna want stuff like your computer, phone, phone charger, book, couple Diet Cokes, actual shampoo and soap (as opposed to whatever that stuff the nurses give you when you actually are well enough or stinky enough to have a shower.)
I thought about that today because I walked home after my infusion was done. The sun was beautiful today. The walk takes about 40 minutes and on a busy Thursday, there’s so much to see. I remember this one particular time I was in the hospital for the third time in six weeks or something. They had just come in to say I couldn’t go home, that I’d probably be there at least until the next week. I remember freaking out and feeling trapped. My IV was a chain, a bond. My gown was revolting. My hair felt so bad. My body hurt. My body felt weak. I was hot. I was cold. I couldn’t just be in my bed. I couldn’t just go to the fridge. Surrender, Dorothy.
Sitting in my comfy chair on the 14th floor having some really basic, really innocuous procedure done, I felt glad that the infusion was all that was next to my name today. Many people have a longer list and no comfy chair at all. Every time I’m at Northwestern, I think about all that.
I landed myself in the ER while I was in Lincoln. I didn’t know whether I’d tell the tale, but I will, because it’s dramatic and it gives me another opportunity to thank the folks who took care of me. If you’re icked out by the female anatomy, you can skip this one. The post has to be a bit longer than usual to tell the full story, but it pays off, I promise. If you keep reading, you’ll get to the following sentence: “The president of the International Quilt Study Center & Museum was holding my hair so that I could barf in her kitchen sink.”
When I let the Study Center president know I would be able to attend the opening reception for Blue Echoes, Leslie insisted I be her houseguest that night. It’s a three-hour drive from Lincoln to Winterset; it would be silly to try and drive home so late. I accepted at once and packed a toothbrush. Sleepover with the prez? Awesome.
At the party, I felt a twinge. I know a person for whom English is a second language who calls a woman’s period her “days.” As in, “I’m sorry you’re feeling unwell; are you having your days?” I love that (so German!) and have adopted it. So yes, at the party, I began to have my days. Great.
As the evening progressed, I got progressively more interested in being horizontal and putting something warm on my abdomen. My days aren’t usually too rough; I have mild cramps, some irritability — but I have had some corkers in my day. That night in Leslie’s lovely guest bedroom, my number was up, or so I thought. I slept all of four hours, waking from pain so intense I moaned. It felt like my uterus was being wrung out like a wet beach towel. It felt like a Doc Marten boot was stepping on my reproductive organs and grinding around for effect. It felt like that time I was on an airplane and projectile vomited then passed out because a cyst on my ovaries decided to burst at 35,000 feet.
You don’t have to be at 35,000 feet for a cyst on your ovary to burst. Ask me how I know.
I had planned on leaving for Iowa around 8am that day. After I barfed in the bathroom, I texted Leslie from the bedroom that I was quite ill and would have to stay in bed for just a bit longer, if she didn’t mind. And would she, maybe, quite possibly, please bring the warm Bed Buddy thing she offered last night? She didn’t mind, she brought the Bed Buddy, and I told her how bad it was. I didn’t need to tell her; I looked pretty bad. I also told her that 1) my GI doctor told me last week I need two bags of iron as soon as I can get them and b) I have a not-small ovarian cyst on my right ovary. “If things were to get, you know, worse,” I said, “That’s relevant information.” This did not feel like cramps, even bad ones.
Leslie nodded and told me St. Eve’s Hospital was just down the road if we needed to go there. She brought me the family barf bowl (it’s a really good one), and told me she’d check on me in fifteen minutes. My body was getting weaker and weaker, and I remembered what it was like when my hemogoblins once went down to four out of the standard fourteen. I did not want that to happen again and there was a lot of blood presently checking out of Chez Fons. I texted Leslie that we needed to take our field trip.
I couldn’t stand upright to get to the car, and on the way, I threw up so hard in Leslie’s kitchen sink for a good two minutes. That hurt. Leslie was holding my hair. The president of the International Quilt Study Center & Museum was holding my hair so that I could barf in her kitchen sink. I told her, in between heaves — and she will confirm this — that this was a funny way of bonding with a new board member. Don’t some presidents take their board members on retreats? She thought that was funny but also suggested that we leave soon.
We did. They were all great. I got good pain meds, an IV, and an ultrasound. There was a whole bunch of fluid behind my ovary and guess what? No cyst. The smoking gun, ladies and gentlemen! I felt markedly better as the day went on, but I stayed at Leslie’s house that night and didn’t leave till the next morning. I am still sore and my days remain. I’ll have to get my iron infusion tomorrow; it can’t wait much longer. I’m basically translucent right now.
Leslie, thank you, and your family, for everything. You can come to my house and barf in my kitchen sink anytime.
I was in the ER recently. It happens. An amusing thing happened this time around.
The triage nurses put EKG nodes all over my chest and arms to get my ee-kay-gee-zies. A male and a female nurse worked together to stick the suction cups all over my torso — unceremoniously, I’ll have you know — and then they punched EKG buttons on a machine atop a rickety cart. They looked at the reading that came out and I saw their eyes get very wide. They looked at each other, subtly panicked.
I was understandably concerned. I asked if everything was okay. I got no answer right away, but then the male nurse sighed a huge sigh of relief and turned to his colleague.
“We’ve got the left and right arm nodes on the wrong side,” he said. He turned to me. “The machine thinks your arms are on the wrong side of your body.”
When you feel bad enough to be in an ER but have no flesh wounds and have been given sufficient pain medication, you are able to cackle with delight. Arms in the wrong place?! What a hoot! I managed to slap my knee before they came to switch the nodes.
“Can I have the EKG?” I asked. “I love the idea of a machine thinking my left arm was on the right side of my body and the right arm was on the left side of my body. I mean, how often does that happen? Can I have it?”
“Uh, sure,” the nurse said, and handed it over.
EKG paper is awesome; it’s onion skin-like, and it’s nice and pink. And hey, it’s your body in pen ink. I told him I wanted to blog about this. And I did.
When making patchwork, one often has to snip what are called “dog ears” from units that create triangles. Dog ears are tiny. Quilters will know what I mean; non-quilters have to be delighted that we call bits of triangle-shaped, confetti-sized bits of fabric “dog ears.” It’s adorable! We also have scissors we call “snips” and when we rip out seams, a common term is “frogging” because: “rip-it, rip-it.”
The above picture is one I took from the floor; an ant’s view of a pile of dog ears. Though I didn’t collapse on the floor yesterday evening, I did have to sit down on it for a minute. I’m feeling quite poorly. I think it’s iron. I saw the dog ear pile and thought it would make a good picture from a level perspective. I’m headed to a clinic in a few hours to hopefully get a blood draw and see what’s what. Maybe I’m just suffering from acute ennui. It’s possible, but would ennui make my legs feel like my legs are moving through syrup? I was so tired last night while I ate soup, I considered putting my face in it. It wasn’t the soup I was after but the opportunity to rest my head.
If it’s not iron or ennui, I’m not sure what’s going on with me, but add to the list a touch of depression; I haven’t been sick in some time and have been feeling fit as a fiddle. It always seems like a matter of time, you know?
Needles are awesome. My appointment can’t come soon enough!
A couple days ago I fell sick. I’ve been feeling well for a good stretch, so this was a drag on a number of levels. Living alone, such spells — when not hospital-bad — come and go and I do what I do to get well and that’s basically that. But my German friend is visiting and I am therefore not just sick but being observed being sick and I’ve been considering how this alters the sick one’s experience. I want to work in that quantum-physics phenomenon about how the behavior of something will change when being observed, but all I could find were five different names for it and something about a cat, so I’d better leave it alone.
There are three problems with having someone around when you’re ill. The first problem is that you need help but you also feel like going into a dark corner and snarling when anyone gets close, wounded animal-style. This is a conflict. The second problem is the mirror problem. When a little kid turfs out on her tricycle, it’s not the skinned knee that makes her wail; it’s the look on her parents’ faces. They panic or look really concerned and bam: the fall is now a Huge Deal, cue sobs. Being sick and observed is a little like that. Yes, my guts are mutinying; yes, I’m walking around like a ninety-year-old. But if I were alone, I’d probably just feel crappy, frustrated, and seventy-years-old. The look on my friend’s face when I shudder and sink into my easy chair makes my state way worse.
The third problem is the fixer-upper problem. Like any caring person, my friend wants very much to fix me, to fix the situation; I’ve dealt with this kind of beautiful, valued concern for years and you mustn’t think I resent it. But idea after idea (e.g., “What if you ate more yogurt?”), suggestion after suggestion (e.g., “You need to sleep eight hours; no less”), and indeed remonstration after remonstration, (e.g., “You put so much pressure on yourself, Mary” and “You travel too much,” etc.) serves to make a person feel guilty and that her behavior is the problem. If only I could find the perfect food formula, if only I would change one thing about my lifestyle, if only I would be someone else, then I would be okay — and be okay forever. Talk about pressure.
Should I live alone forever? Am I less ill if I am alone? Is any person with chronic illness or even a bad cold less ill when in solitude? This is a worthy question to consider and I’m sure I’m not the first to consider it.
It’s also true that I do not notice the gallons of tea I drink every day until someone points it out.
I haven’t told anyone this story from the road trip yet because there is shame involved. It’s a tad longer, but stay with me because it’s got a great payoff.
One night in Utah, I had to go to the bathroom in the middle of the night. This was not unusual, so before lights out, I had done my preparations. That night was a sleep-in-the-car night, which meant that once the seats in the SUV were released and the make-shift bed was made, I put my flip-flops, Handi-Wipes, and fluffy roll of TP into the cubby in the passenger-side door. On the hook above the window, I hung my hoodie and the car keys.
When you are inside a locked car and then try to leave it, unless you first unlock it, the car alarm will sound when you open the door. You must then stab your fob’s “Alarm Off” function, sixty times to get it to stop. When we camped in the car, of course my friend and I locked up once we were inside. This meant that in the middle of the night, when I would get up and go to the bathroom (read: bush), I would have to locate the keys in the dark, make sure I unlocked the car, then exit. Exiting, by the way, was a Ringling Bros. & Barnum & Bailey Circus clown car routine: I squeezed out the door and essentially did a sommersault onto the grass.
We were in a public park that night, so the spot I found was near the public bathroom facilities. I say “near” because the facilities were locked up at sundown, something I found out when I tried to open the door. Okay, no problem. The lights inside the brick structure appeared to be motion-sensored, so I jumped up and down and got the lights to go on, which threw light onto the grass behind the building. It wasn’t a lot of light, but it was enough to “go” by, heh, heh. So I went. Because it was 3am and there was only a dim light by which to see, I covered up my…visit with leaves and sticks and earth matter with every intention — this is important — with every intention to clean everything up in the morning. I respect my National Parks! Bleary eyed, sleepy, with grass in my hair but much relieved, I tumbled back into the car and went to sleep.
In the morning, I looked for the keys to unlock the door before Claus and I got out and made tea. No keys. Not under the sleeping bags. Not on the floor by the seats. Not in the front. Not in the back. We were trapped in the car. If we opened the door, the alarm would scream and, not having keys, there would be no way to turn it off. It was getting really hot inside that car. We finally determined that we could open the car doors because the dashboard screen said, “No fob detected,” which, considering the situation, is the best example of a “mixed blessing” ever.
We took a deep breath and opened the doors. No alarm sounded. The keys were nowhere. They were really, really nowhere. I combed the park, convinced I had sleepwalked the perimeter in my pajamas and dropped the keys. Claus looked under the car twelve times. We looked for an hour and then I began to cry. Those keys, impossibly, were Gone. Do you know how much it costs to get a replacement key for a rental car? Both cell phones were dying. This was a bad, bad situation. Oh, and one other thing: I looked many times around the makeshift bathroom area I had created at 3am. Not only were the keys not there, but my bathroom, such as it was, was not there. I didn’t have to clean anything because there was nothing there. No paper, no leaf cover. Someone had cleaned.
I called the Park District. Had someone been by? Had they found keys at XYZ Public Park near Zion?? I was going to clean up! Please! Don’t judge me! And okay, judge me, but did someone find keys for heaven’s sake?? Nothing here, they said, but you could talk to the police. I was patched to the station and I blubbed the story to the officer there, that I have a condition that makes me have to poop all the time [sorry] and I have to go in the night, and was it at all possible that a Park District person came through, saw that there was an…incident, and cleaned up and maybe found car keys nearby?? Somehow??
There was a silence. Then:
“Well, I’ve got your keys,” the officer said.
I almost fell off the memorial stone slab I was sitting on. “You do??? You DO???” I flapped my hands at Claus. “You have them?? But…but how? Oh, god… Someone found my… Oh, no, oh no…” And I began blubbing again that I’m not a bad person, that I’m a law-abiding citizen (mostly) and, “I’m so, so sorry that –”
“First of all, you can’t be campin’ in the park,” he said. “And yeah, the guy who does the bathrooms over there found the mess. He waddn’t too happy ’bout it, either. Stepped right into it. He found the keys in the grass there and brought ’em over to us. I can get ’em over to you in about an hour when I’ve taken care of this other thing.”
I wept. I told the officer that I would pay any fine he’d slap me with and would enjoy paying it. He said that wasn’t necessary. When he brought the keys I again begged him to let me give him money. He declined and said it was all no big deal and to get along, now. I think he took pity on a girl who had slept in a car and had to poop in the middle of the night.
Later, Claus said that in the early morning, he had heard what he thought were two men arguing. We figure it was the cleaning guy, shouting and hollering when he discovered the situation. I’ll have you know from then on, I did not wait until the morning to clean up any bathroom area I created. Turns out there are these things called flashlights.
I must confess a strange sense of embarrassment when I the surgeon told me he saw a small gallstone on my CT scan. Aren’t gallstones what obese men in their late fifties get when they eat cheeseburgers all day, watch SportsCenter and smoke Pall Malls? My brain also connected “gallstone” with “kidney stone” and boy, I’ve heard some horrific stories about those things. Really, any time a doctor says the word “stone” in conjunction with the words “inside” and “your,” you’ve got some thinking to do.
When I got home and stopped barfing, I read up on gallbladders and what can go wrong with them. A person can get gallbladder cancer, but this is extremely rare. (There’s a terrible, terrible joke here, barely: Q: What did the gallbladder say to cancer? A: “What am I, chopped liver?”) No, it’s mainly just gallstones that afflict our gallbladders. But why and how? First, we have to understand what the gallbladder is for: it does stuff with bile. That’s it, that’s all I can tell you. It’s not important. Well, it isn’t! You can have your gallbladder removed, so how important can it be? Your honor, I rest my case.
Still, you don’t want things going awry in there, and then things do. Gallstones are hardened deposits of digestive fluid. Considering that my guts are made of cotton candy and popsicle sticks, that I would have a digestive fluid problem isn’t a huge leap. Many people have gallstones; most people don’t know they do and don’t have to know because most gallstones are small and harmless. They form for various reasons and yes, one of the reasons is having high cholesterol due to many, many cheeseburgers and no exercise, Pall Malls, etc. But some gallstones form because…well, why shouldn’t they? Don’t judge a gallstone for wanting to live. Gallstones are just like you and me.
My friend told me this morning that he had a terrible time with his gallbladder and nearly had to have it removed; he avoided this in the eleventh hour thanks to medicine and fluids. He did say the pain he experienced was the worst of his life. He passed out and he’s no fainting goat.
I have zero symptoms, though. I think I’m one of the people who will never have to deal with my stone (I like to refer to it as my little “gallpebble,” thank you.) If they have to take it out, though, I ain’t scurred. Actually, it would be kind of exciting. Taking out my gallbladder would increase the number of organs I’ve had excised from three to four. If you count tonsils and four wisdom teeth, now I’m getting to be a real conversation piece. Oh, and there were a couple suspicious moles removed a few years back. Hm. Parts of my body are just flying off into space, aren’t they?
Tomorrow we examine (in words, in words!) my cyst. What nerve! What gall!
I spent the majority of the day in the hospital yesterday, dagnabbit.
Sometimes it seems that I get sick or have something go wrong and when I recover, it’s time to set my stopwatch and wait for the 00:00 to hit and then it’s back to the nurses and doctors. My 00:00 came the other night and yesterday, I could wait no longer to take my watch to the ER.
Starting last week taping TV, I felt this a strange, new pain. (It’s always exciting to experience a symptom for the first time! It’s like making a new friend.) There was intense pain and a strange gripping, clenching, internal dripping (??) feeling around my old ostomy site. I’ve got a fabulous scar to the right of my bellybutton and all around it, tenderness and a disturbing hardness had arrived. And did I detect streaks? Under the skin? Oh, dear. Oh, boy. It was worse when I bent over to pick up my house keys, which happens all the time for some reason.
My new friend Elle (a quilter, no surprise) told me when I got to DC that if I ever needed medical care, to call her immediately. “I know from ER trips,” she said, having taken various members of her family on a regular basis. “I’ll be your advocate. I know about that, too.”
I really, really hate calling in favors, but I did. Elle and baby Miles took me to Sibley and I’m happy to say I received excellent care. Surgeons poked at me, internal medicine doctors prodded me, CT scans were ordered, and pain medicine was blessedly dispensed. I barfed a lot, too. We were there for eight hours and Miles was an angel. He also was useful: when Elle would go out of my room to ask for something, the staff was like, “Oh!! Adorable baby!! Yes, how can we help you? Adorable baby!!”
Results were inconclusive. The surgeon thinks it’s sutures working themselves out, maybe adhesions shifting around. But I got bonus diagnoses: I have a small gallstone and a 2” ovarian cyst on my right side. Wow! And I just came in for what I thought was a piece of my intestine ready to quit on me. I told my surgeon about my lipoma, too. He said it was no big deal and laughed when I told him how I found it.
All you have to do is get out of bed in the morning. Things will happen to you. Experiences will arrive. What will happen today? Time to wake up.
Here’s what happened. No pity party, just the facts.
I’m crazy anemic. On top of that, I’m leaking blood somewhere, and this wimpy system got hit with a virus that was less like “the flu,” more like “the Invasion of Normandy.” The triple-threat was disastrous.
I sort of knew I was kind of anemic; I remember a doctor saying something about this years ago. But I didn’t know it was a big deal and I figured it was related to surgeries. Mild anemia is not a big deal, but severe anemia is and it’s not just related to surgeries. Anemia, by the way, is “a condition marked by a deficiency of red blood cells or of hemoglobin in the blood, resulting in pallor and weariness.” I’ve always been pasty and pale; now I know there’s a reason I look like a character cut from Twilight. When taping the TV show last year, I caught myself on the monitor standing next to a tanned, Texas-dwelling Liz Porter and scared the badoobies out of myself; I was practically translucent by comparison.
The headache came on Thursday night, an H.R. Geiger creature trying and failing to claw its way out of my head (the failing part made it try harder, see.) I do remember things — spinal taps don’t fade from memory quickly — but it’s all in patches, including a visit from my Chicago GI doctor one of the days I was at Northwestern. Dr. Yun asked me, “Mary, what the heck is going on with you??” I remember croaking out, “I have to get on a plane to D.C. tomorrow morning” and she basically laughed me out of the building. My mother came in from Iowa; if you said you’d give me five million dollars to tell you when she arrived, I would not be able to take that money home. My sister and her fiance visited; I remember stories they told me of their visit to India, but when did they come? How long did they stay? I remember texting three people, one time each, but I can’t remember one of the people I texted and I have no idea what I said. A friend came to visit and all I remember is him opening his mail. I blogged twice and I am so afraid to read those entries for fear they were absolutely unintelligible.
They did an upper GI. They did another pouchoscopy. They did a CT of my brain. No bleeding so far. They tried an MRI but I pressed the panic button; the congestion in my chest was so bad, I couldn’t breathe outside of a head-locking, skull-screw, mask device; inside one, I was a basket case. I’ll reschedule that and the pelvic ultrasound.
So there you have it. Tomorrow, lighter fare. Now I must rest. I am in D.C. again, horizontal, unable to move anything but my fingers. They’re fine! I feel like I got punched in the ribs and someone has been beating my organs with a fish.
The title of this post is a play on the title of a song I love by the Beastie Boys: Three MCs and One DJ. The Beastie Boys were and are the best band in the world, so that settles that.
I had an upper endoscopy, a pouchoscopy, and a CT scan different from the CT scan I had yesterday because the one today involved contrast. When you have a CT scan with contrast, it means that when you’re in the big donut, you hear a voice come over the PA system that says, “Okay, Miss Fons, we’re going to start the contrast,” and then you feel the strangest, wildest warm liquid spread through your body starting at the point where you have your IV placed. Contrast fluid is getting pumped into your veins and you feel it! and it makes your belly warm, and it makes your arms and legs warm and, let’s be honest, it makes all your parts, hm, very warm and it’s not unpleasant, but this is not going to be offered as a spa treatment anytime soon.
So those were the three procedures I made reference to in the title; the DJ was just the muzak over the speakers as they wheeled me on the gurney to and fro and to all over these Northwestern hallways.
Did I mention yesterday they did a freaking spinal tap? And that I got three freaking sacs of human being blood? I have no recollection of writing yesterday’s post but I can’t bear to go back and look to see if a) I really did and b) if it needs revising/overhauling — I’m sure it does. No use. Typing through pain medicine is like typing Morse code through Jell-o, through pain medicine. It’s very anxiety-causing. Each PaperGirl post is a mini-newspaper, you know, except that every post is a first draft. The audacity.
The doctors don’t know what’s going on. Tomorrow, a pelvic ultrasound. They have to figure out where the Sam Hill all this hemoglobin is going. Fibroids? Something more sinister, still? My sister Rebecca and I have decided to call my blood cells my “hemogoblins” and we have to corral them all back to where they need to be.
Dull as my brain might be at the moment, the moments themselves, they live in the Land of The Neverdull.
Sometimes, the universe cuts you a break and life’s cheese grater is swapped for a feather pillow. This morning, I flew into NYC to have a procedure that would determine the health of my intestines.
There is no detectable inflammation. My pouch is scarred, it’s too small, and related aspects of all this will cause me discomfort from here on out, but how could I possibly care when the doctor tells me I’m not bleeding internally? My long-lost colon literally ate itself to death, but it appears my j-pouch don’t even want a snack.
When you think you’re on a bullet train to very bad news, it colors everything you do. Having a bad day? It’s worse than it would be, because in the back of your mind, you think, “This day is lousy and also I’m dying.” When you think the clock is ticking toward bad test results, a good day is tinged, too, just a little, because you find yourself fleetingly thinking, “This day is fantastic; I don’t even care that there may be something terribly wrong with me.” O, pernicious subconscious; how ye thwart joy and gladness.
That this burden is lifted from me for the foreseeable future… It’s hard to express my relief. To be absolutely honest, the tiny August Strindberg in me does wonder how long the good news can last, but the Chiquita Banana in me is beating him down with a banana.
Thanksgiving is on WiWi this year, and I am presently nestled in a nook.
The nook is the cozy, upstairs reading room at our island cottage; the nestling is due to me sitting in an over-stuffed chair (replete with ottoman), a well-worn quilt wrapped around me so that I am a quilt burrito. It would be great to have armholes in this quilt burrito but it’s bad for my reputation to go around cutting armholes into quilts. I adjust.
We couldn’t get from Chicago to the last ferry boat last night, so we had to stay on the mainland; “we” is me, my younger sister Rebecca, and her fiance (and my friend), Jack. We have a favorite little motel in Sturgeon Bay but it was too early when we got there to turn in for the night. The options for movies were lackluster at best, and I have no idea what possessed me, but when my sister said, “Well, what should we do tonight?” I blurted out, “Let’s go bowling!”
Rebecca and I both took bowling in high school. At Winterset Senior High, bowling, square-dancing, line-dancing, and tinikling for some incomprehensible reason. I remember being pretty good at bowling and liking it, but I have not kept my game up since.
We found a wonderful bowling alley very close to our hotel. The Apple Valley Lanes in Sturgeon Bay gets two thumbs way up. The proprietor was friendly, the onion rings were scalding hot, the shoes were sufficiently deodorized and Lysol-ed, and best of all, there was room for the three of us to have our own lane, our own computer to keep score, and a table for our drinks.
Jack was excellent; Rebecca was quite good, once she warmed up. I was excellent to begin with but in the second of three games, an evil spirit entered my bowling ball. My last game, I bowled a twenty-seven. Twenty-seven! I can hardly admit it.
My body has been absolutely in agony the past week. The stress of the move, the upheaval, the changes in work — the ol’ girl’s run ragged, I’m afraid. Terrible nights turn into excruciating mornings and I beg for sleep only to wake again, run to the bathroom, weep, bathe, and do it all again 30 minutes later. I say this because a) writing it out here it makes it not feel like a nightmare that only I see; and b) it makes three hours at a Sturgeon Bay bowling alley not just fun but fundamental.
If the first trip to the ER in Atlanta was harrowing and depressing, the second trip restored my faith in humanity. Oh, it was still harrowing and there was plenty to be depressed about, but I had a friend with me on the second trip and that made all the difference. (First half of this two-part post here; more on how I got here in the first place, here. )
So there it was, Saturday morning. I’m in my hotel room, and nothing good is going to happen. After agonizing deliberation (because I didn’t want to make a fuss, be dramatic, or admit defeat) I called my friend and colleague, Marlene.
A word about Marlene.
You know the feeling you get at Thanksgiving dinner when all the casserole dishes have been put out and your mom has finally taken off her apron and is sitting down for Pete’s sake; when everyone has wine and rolls, and the turkey’s out and the gravy pitcher is already making the rounds; that moment when everyone raises their glasses to toast and the kids are toasting with juice or milk and you’re just overwhelmed with love and gratitude because people are generally good and the world is spinning at the correct speed for once? That feeling? That is Marlene. She is the embodiment of the Thanksgiving toast. She is everything that is good.
She’s also a successful businesswoman at the helm of a national network of convention center-sized quilt shows — including Quilting LIVE!, the show that had taken me to Atlanta. Tools Marlene carries at any given time might include: a laptop, bluetooth headset, box cutter, first-aid kit, talent contracts, cash box, dinner reservations and a little gift she got you, just because. As you can see, Marlene is a good person to call when you’re slightly dying.
Marlene arrived in lightning speed and helped me down to the car. Her husband was waiting right outside. (Don’t get me started on Stan; if Marlene is the Thanksgiving toast, Stan is like, birthday cake the day before your birthday.)
Here are excerpts from conversations that morning at the hospital. These are pretty much verbatim and all illustrate the need for an advocate at the hospital — preferably Marlene:
Conversation No. 1
NURSE: (to me) What do you do, hon?
ME: (weakly) I’m a…quilter. Writer.
MARLENE: This young lady is a national television star. She’s a magazine editor, an author, and an expert quilter here for the quilt show in town this weekend. She’s a dear part of our team and we care about her very much. We’d like to see the doctor. Now.
NURSE: Uh, yes, right away!
Conversation No. 2
ME: (feebly, to NURSE.) Please… The pain medicine. Please, when you —
MARLENE: (to NURSE.) I’ve asked you three times for lidocaine and pain medicine. If I have to ask again, I will not be very nice. Thank you, we appreciate it.
Conversation No. 3 NURSE: Okay, here’s that pain medicine. This should help.
ME: Oh, thank you. Thank you.
MARLENE: Now we’re getting somewhere. (to ME.) I’ll go down and get the prescriptions, hon, you just sit back and let that take effect. That’s the good stuff.
The help with the nurses, the coordination to help cover my show duties that morning, and of course the ride to the hospital — all that was beautiful. But perhaps the best thing Marlene did for me was when I lay on the bed in the exam room, twitching and gnashing my teeth. She stood above me and smoothed my hair, stroked it softly as we waited for the doctor. That simple, compassionate action did more for me than the Dilaudid, I swear.
“I miss my cat!” she laughed. “You’re my cat right now, Mar.” And she made me laugh, and I felt better. And then, ever thinking, my advocate said, “Does this bother you? Do you want me to stop?”
When I went to the ER on Thursday, I went by myself. When I went to the ER on Saturday, I had an advocate. The difference between the two visits was stark. I’ve been to an emergency room alone before and I’ve gone in plenty of times with a friend or family member, too, but never in such short succession. Comparing the trips closely showed me plainly how one has to do these things:
You must have an advocate at the hospital.
If you are a solo person considering driving yourself to an ER tonight (or any night in the future), I urge you to call someone to go with you; at the very least, ask someone to meet you there. Of course, if your arm is hanging off or you’ve got visibly spreading flesh-eating bacteria working its way across your chest, you will probably get through the door with a minimum of hassle. I’m talking to the people out there who struggle with internal problems (e.g., possible appendicitis, possible internal flesh-eating bacteria, fissures, Crohn’s, etc.) because without someone to vouch for you, you are light years away from the care you assume you’ll get in a room created for the express purpose of dealing with people in emergency health situations.
Note: If you’re a person who doesn’t have a soul on earth to call, my advice would be to get to the ER tonight however you have to, get the hell out, and set about making some friends first thing tomorrow morning. Book clubs are good, online dating works well, and if you’re a quilter, run to your nearest guild and join the next sew-a-long. Any of these strategies will yield people clamoring to take you to the hospital before you know it.
On both trips, I was in identical straits. Pure agony. Any human being who took one look at me (and how could you miss me, howling like that) could see that this was a woman in trouble. Was I foaming at the mouth? Well, no. But I was flagging. And while I understand totally the need for proper identification and at least a cursory examination of a person before IVs and medications are flung around hither and thither, Thursday’s experience reminded me that the collective brain of the ER has been removed and a skeptical, bureaucratic, Policy And Procedures Manual has been wedged in its place. This is not news, I realize, but my shock and indignation is fresh, so it feels like news.
Additional Note: I’m sure there are at least a handful of folks reading who are now or have been professionals in the medical field. I owe my life to a number of you, first of all, and don’t think I don’t know it. I see the problem(s) I’m talking about having less to do with individuals and more with the medical industrial complex. Indeed, it is the lack of individuality and specificity in the system that does damage.
The nurse was working the night shift. I get it. That sucks. And we all have bad days. But she began from a place of inhumanity. She came past my curtain and asked quite casually, “What seems to be the problem today?” (I’m writhing on the bed at this point.) She almost snorted when I told her I needed a certain kind of pain medicine — I’m allergic to morphine — and when I refused a CT scan I felt a freshet of loathing from Little Miss Ratchett. I know roughly when a CT scan of my abdomen is needed and when it is not; it would’ve been useless to do one at that time, given my symptoms and my traveler status, most especially because my pain had yet to be treated. (It appears that hospitals do far more CT scans than they need to**, primarily because they can bill for them. To be fair, this over-scanning has something to do with protection from litigious customers, but I felt my hospital was being either lazy or thick with their order. Not that I said so at the time.)
Halfway through my time there, as I’m trying to explain my entire medical history again, somehow, and get what I need to feel better, I realized how silly it was to be there alone. It was my fault. My stoicism was ill-conceived. The nurse might’ve been a jerk, but I looked up some stats and it appears that fiending drug addicts make frequent trips to emergency rooms all the time, looking for a fix. Here I was, a woman by herself, from out of state, with no visible injuries, crazy eyes, and an increasingly petulant attitude (see: refusing CT scan), begging for pain medicine. If a junkie could pull off looking/sounding like me that night, that junkie would be pretty amazing. But I hear they’ll do anything, so maybe the nurse was right to be so totally unhelpful. I tried to get in touch with someone from the quilt show to speak with the hospital, but when I couldn’t make contact and feared waking up the whole team, I gave up. Not being able to call for backup did not help my case.
I left with the bare minimum of relief and went away, 10% better in one regard, 30% worse in others.
Tomorrow, the second visit, and the wonder of compassion, advocacy, and my friend Marlene.
**Between2000 and 2010, the National Center for Health Statistics showed the use of advanced imaging scans— CT or MRI—increased to 17% from 5% of all emergency-room visits. A Push For Less Testing in Wall Street Journal, Feb. 23, 2014.
Always travel with a large scarf. This is a rule for all the ladies. Men should heed the scarf rule, too, but they may understandably beg off for fear of appearing too European.
You will find that a large scarf serves many purposes on a journey. I have used my oversized, linen/viscose, blue-and-white polka-dot Marc Jacobs scarf (variation pictured above) in the following ways since leaving for Atlanta. My scarf has been…
an artsy-fartsy fashion accessory
a warm shawl
a bunched up pillow in the backseat of a car
a filter at my nose/mouth because someone in front of me was being fartsy on the plane (no artsy, just fartsy)
a napkin (just the corner)
a blanket on my lap while in various wheelchairs yesterday and today
a comfort (see: familiarity, things that are soft)
After my interview with Nellie Bly, I foolishly thought I might get another good night’s sleep and be ready to tackle Day 3 of the Atlanta trip without incident. The Agony had other plans for me, however. Around 1am, it wrapped a ragged, bloody fist around my abdomen and associated parts and every half hour, on the hour, I was in the bathroom, basically disintegrating at an alarming pace. It was 2:30am, it was 3:17am. It was 4:02am, it was 5:01am. I was afraid my pitiful wails were going to start waking the people in rooms nearby. I made deals with my body: “You stop doing this and we’ll go to the zoo, baby,” and “You cool it, we’ll go to Atlantic City.” I took five sitz baths. I used my entire arsenal of medicine — twice. No relief. It was 5:48am, it was 6:23am.
My class was to begin at 8:30am. I would take a step and stop, locked in position, my face in some crazy kabuki mask of pain or death. Just when I got my face right I’d have to go to the bathroom again and the battery acid/toxic waste mix would run through me and I would squall like a newborn baby. I managed a shower, noting my knuckles (white.) It was 7:02am, it was 7:26am. The tasks before me included: putting on my makeup and packing the case, zipping my luggage, making it to the elevator with a box of my books, my suitcase, my briefcase, and my class materials. Also, I had to stop crying. I sat, gathering my strength to do these things. I sat for so long, I realized they were impossible. I called for help.
And so it was that I went to an Atlanta ER again, though the second time it was to a different, better-run hospital and I did not drive myself but had more than one friend with me to assist me at the gates. It made all the difference in the world. I got medicine that helped me avoid pain-induced cardiac arrest (it’s funny, really) and plans were rearranged so that I would stay another night in Georgia, not go home to NYC, and come straight to Iowa a day early.
I’m telling you, that scarf was a lifesaver. It covered me in the hospitals. I wadded it up and bit on it before the pain meds kicked in. I dried my eyes with it. In the wheelchair in Atlanta, the one in Chicago, and the one in Des Moines, it was my little lap blanky — you know, like your Nana puts over her legs when she plays bridge? That was me. I was your Nana. I was probably paler and slightly more demoralized than your Nana, but I’d better not go around making assumptions about Nana. Nana’s a pistol.
Take a scarf. You never know.
**Note: The Fons & Porter company is great for many reasons. They were nothing short of heroic these past couple days. You too, Katy. Thank you.
PaperGirl: The Quilting LIVE! show is fantastic. Lots of quilters, beautiful quilts, classes — it’s a great show. We did a luncheon event today where I had the pleasure of interviewing my mother and Liz Porter while attendees enjoyed salads and pecan pie — it was kind of a phenomenal event, honestly. Very inspiring, very entertaining. Mom and Liz are amazing. Later, I sold a ton of books at my book signing and there’s another signing tomorrow. So yeah, it’s been good.
NB: (Pause.) I understand that you had a setback.
PG: (Pause.) Correct.
NB:You went to the ER?
NB: In Atlanta?
NB: When? What happened?
PG: I was struggling pretty bad Wednesday but pushed through. At about 3:15am, I couldn’t catch my breath, the pain was so intense. I decided to drive myself to the hospital.
NG: You rented a car.
PG: Yes, and I’m very glad I did when I arrived here. It came in handy.
NB: The pain you were experiencing was related to complications from your illness. Do you want to elaborate on what was going on?
PG: Not particularly. It’s all so unpleasant. I can tell you that I’ve had these issues before and I know when to say “uncle.” Wednesday night — Thursday morning, actually — was as bad as it’s been. I said uncle.
NB: Did you find relief at the hospital? Were they able to help you?
PG: I had better care at Bellevue. It’s hard to be at a hospital in a town far away, on your own. It’s hard to advocate for yourself in the system, you know? And if you’re in excruciating pain, it’s worse. Look, I’ll spare you the details, Nellie. I had a pretty awful nurse. She was…unresponsive. Very cold. The doctor tried order a CT scan, which was absurd. They always want to to a CT scan but 9 times out of 10, you don’t need one. That’s my very unprofessional opinion, but I’ve been around the hospital block enough to know. Anyway, they gave me enough Tylenol 9000 or whatever to crest the worst of it. I returned to my hotel room and got about two hours of sleep before I had to teach my class at 8:30am.
NB: Yikes. Maybe you should’ve cancelled class and rested. You have to take care of your health.
PG: Oh, I thought about cancelling the day, sure. But I weighed the options. Option 1 was to be in pain but push through and grit my teeth and make it work. Option 2 was to languish, feel depressed, still be in pain and miss the committments I had made and let people down, etc. Option 2 seemed worse, so… I went with Option 1. My students were so wonderful I had a great class, actually, and I just sorta made myself stay upright.
NB: How do you feel now?
PG: Better! I got a really good night’s sleep last night. That helps a lot. Thanks for asking.
NB: When do you go home?
PG: I go back to New York tomorrow for about 36 hours. Then I fly to Iowa for the first week of TV. Mom and I go to South Carolina over the weekend for a Quilts of Valor event. Then we come back for the second week of TV in Iowa. Then I go down to the Panhandle for another 3-day event.
NB: Hm. Are you su–
PG: Option 1, Bly. Option 1.
NB: I’d like to ask you ab–
PG: I’m pretty tired. No offense. But it’s been a very long couple of days and, uh, I’m gonna hit the hay.
This morning, I drank tea and wrote in my journal. It was the same as so many mornings, save for two differences: the tea was black and the sky was light. Not long ago, it was the other way around.
Almost every day of last year and into a healthy slice of this one, I would get up before the sun to read and write. I rarely set an alarm; I just woke up, sometimes at 3:30 in the morning, unable to go back to sleep. This was due partly because I was excited by the prospect of being up when so few others were. I felt as though the hours from 3:30am to 5:30am were on sale; perfectly fine hours that no one really wanted. They came cheap.
But I also woke up because like a newborn baby, I needed soothing. I was scared and sad and lonesome, “waking at four to soundless dark.”** Having my tea tray in bed in the middle of the night with my journal and books all around me was how I soothed myself. The routine was the gentle mother, swaying me to calm.
The fall of 2012 was the worst time of my life, health-wise. The despair of searing, chronic pain worked its way into every fiber of my frame. The sheer exhaustion of day-in, day-out agony management had constricted my world into a hard, glittering dot. I worked very hard. I was in a relationship I cherished, but there were limits to it and we both knew it. My social life outside of seeing Mr. X dwindled to zero, as most of the time I didn’t have the energy to make plans, much less make good on them. I fought with my sisters or I withdrew from them. My mom and I weren’t getting along, either. I didn’t want any of this whittling away to be true, except that I did, if it meant sanity. The hard, glittering dot I could focus on. Everything else was too hard. I was in the hospital all the time.
The medication I was taking made my head feel like a rainstick. You know those things you get in hippie music stores? It was like that when I sat up in bed. “Wffffffft,” my face and brain would go, one way, then I’d put my head on the headboard and breathe and “Wfffffff,” the rainstick would run the other way. I’d take a deep breath — not too deep — and determine if my guts were good, bad, or a real laugh riot. At that time, it was usually the riot. After gentle tummy rub and pat and an admonishment to stop flirting with cigarettes (there were days I’d have half a one, feeling it was justified, being in the trenches and all) I’d decide that I could make it to the kitchen. I’d usually have to stop halfway from my bedroom to put my hand on the living room table and let the rainstick go for a minute, but I never fainted.
Then tea tray preparation would commence and I so enjoyed it. While I waited for the water to boil in my stainless steel kettle (I brought it to New York with me, like a goldfish) I would do the things. Into the French press went the tea: Earl Gray Creme, loose, from Teavana or Argo Tea. No variation there; I’ve been drinking this tea for years. Then, into a little monkey dish my sister Rebecca made in her pottery class, almonds: Dry Roasted & Salted from Trader Joe’s. They had to be these almonds; no others would do. Then…Nutella. I’d scoop a big scoop of Nutella into the little monkey dish because Nutella and Dry Roasted & Salted almonds from Trader Joe’s is delicious. It’s like eating a candy bar in a bowl. Sweet, salty, and totally decadent without being half a cheesecake or a box of petit fours. (One of the results of being so physically miserable all the time is that you feel you have license to eat whatever the Sam Hill you want to, especially if you’re only managing about 1000 calories a day.)
With the honey pot, the pichet of milk, a couple spoons, a little dish of meds, and my fancy Versace teacup, I’d be ready. The water would reach pre-boiling, I’d pour it into the French press, and then I’d carry the whole operation back to my fluffy, lovely bed and sink into the cloud again.
I read all kinds of things. And I wrote pages and pages. I wrote my grad school essay that way and I would work, too, so there’s a lot of those mornings in Quilty, however invisible they may be in a happy quilting magazine. You never know; maybe the weirdness is there. Quilty is kinda weird.
The 4am mornings, they’ve been slipping away. This spring, when I was first in NYC with Yuri, I kept them up a little, but my body and brain were soon in agreement that sleeping in the arms of love is better than sitting alone, crunching hard almonds coated in the sugar that was probably killing you all along.
Yuri sleeps later than me still, though, so I still get up and read and write. But the tea is black. And the sky is light. And that rhymes and I love it, and I love that it rhymes.
**From Philip Larkin’s “Aubade,” the finest poem in the English language, in my view, and a kind of poetic soundtrack, if you will, to this entire era.
I have a mission in life: I am going to save my j-pouch.
If you don’t know what a j-pouch is, that’s good, because it means you’ve never been personally introduced. If you do know what a j-pouch (or “ileal-anal” pouch) is, you and I could sit down and talk about a lot, I’ll bet.
Either way, if you’re new around here you might want to read Part I and Part II of my health history timeline because you’ll want some background for tonight’s post. Warning: It’s not a fun tale and I wouldn’t recommend eating while reading, so put down the snacks.
If you don’t have time to go through all that, here’s what you should know:
1) I was/am a gimp** because of Ulcerative Colitis (UC); 2) I was treated for UC but made more gimpy in some ways because of not-so-successful surgeries, each with new and exciting complications; 3) Today I am less gimpy than I was but still a gimp and now have a decision to make: Do I opt for a permanent ostomy bag or continue living with my dubiously successful j-pouch and its attendant woe?
While an ostomy bag isn’t the end of the world — I know firsthand, having had one for a total of three years — it does blow. More than what I’m dealing with now? Hard to say. But I’m not giving up my internal ileal pouch without a fight. I’m going to do whatever it takes to make my ruined gutscape look and feel like a damn prom queen. Think sunshine on a field of daisies. Think kittens frolicking in strawberry patches. Think pretty — the opposite of what I got.
* * *
Back in the 1960’s, a woman named Elaine Gottschall had a young daughter with Ulcerative Colitis.
Elaine and her husband lived in New York City. They went to specialist after specialist and their poor kid went on massive steroids and other drugs only to face surgery, anyway. Then the Gottschalls had a stroke of luck. They met a doctor who stared down the hopeless mother and asked:
“What have you been feeding this child?” None of the 15 docs they tried had asked that one.
“Um, food?” was the answer he got.
The doctor put little Judy on a very strict diet: zero starch, zero sugar, and lots of homemade yogurt. Within ten days, surgery was not a pressing concern. Within a year, Judy was growing like a weed, no longer bleeding, no longer living in the bathroom. The kid was better. No, no: She was a lot better.
Elaine was hoppin’ mad that her little girl had been through so much, how she had narrowly escaped being super sick and having an ostomy for the rest of her life, or, you know, dying. She decided to check out how it was that food could cure digestive maladies — and why she hadn’t known that till it was almost too late.
Elaine went to the library. She read many books. Elaine came of age during the Depression, so she never had the opportunity to go to college. She decided to go. At 47, she went to college to find out more about why the diet helped her kid and how it could help other people, too. She got degrees in biology, nutritional biochemistry, and cellular biology. Then she wrote a book. Then she wrote another book. Twenty years and a zillion testimonials later, Gotschall’s work is still in print and many lives have been saved, many more vastly improved, all through the science of nutrition as it applies to sorry souls who are smote with intestinal disorders.
Look, Elaine Gottschall was just a person. But she helped a lot of people.
Along with some other treatments — and under the care of my physicians — I’ve begun Gottschall’s Specific Carbohydrate Diet (SCD), which is designed to starve out harmful (to me) bacteria in the gut and repopulate it with healthy bacteria. It’s a rebalancing act, a total, very much “natural” intestinal renovation. “Gut remodel” would be an appropriate, if too cute, way to put it.
Above all, it’s a major change. “Lifestyle modification” begins to describe it. I can’t use the wooden spoons I use for Yuri’s food because of cross-contamination. “Puree” is a word I have to get comfortable with for awhile. I have to eat an insanely limited number of foods the first phase of the thing, though after the first period I can start to branch out. If I thought about how I can never have chocolate again, ever, I would give up this second.
Maybe not, though.
Because it’s funny how any food becomes far less delicious-looking when it makes you cry a couple hours after you eat it.
Ninety days. Then we’ll see.
**Yeah, I can say “gimp.” We can call ourselves that, but if you’re not a gimp, you can’t call us that.
Though I would like to write about how every few years the public must endure Fashion’s attempts to make denim overalls cool (oh, how they try and fail!) and how this is just silly and I can’t believe we haven’t learned to ignore Fashion on this, I think that ought to wait till tomorrow. To go straight from talk of ambulances and surgeries to ill-fitting overalls is not nice. It’s like going from a popsicle to a steak. Jarring. Rude, in some cultures.
And so as I went about my day today, I tried to think of a good bridge. “I could write about what I’ve learned since getting sick,” I thought, and mentally wandered down that road. But on the way I came upon all the things that I feel more confused about, and things that I observed that didn’t necessarily teach me anything so much as simply surprised me.
So tonight, a few lists; tomorrow, overalls.
My Oprah Winfrey, “What I Know For Sure” List
– The saying, “What doesn’t kill you makes you stronger” is bizarre and largely untrue. More often, what doesn’t kill you leaves you weakened, compromised.
– You can get used to anything.
– There is no time. You must do it now.
– Being in a hospital blows. Stay out if you can, but if you must go in, pack a bag. Take your phone charger, your sock monkey, your journal. Take your glasses (if you wear them), your laptop (if you use one) and anything else you would want if you have to be there for long. As bad as you feel, try, try, try to pack a bag from home to take with you. It will bring you great comfort when you wake up.
– Visiting people when they’re in the hospital is one of the kindest, nicest, most lovely things you can do for a person. I remember every last person who came to see me. Thank you. It meant everything, every time, bless your hearts forever and ever. (Rebecca, if you’re reading this, I’m looking at you right now especially. You too, Bilal.)
Curiosities – I’ve seen myself from the inside out: I have handled my own intestines. I am kind of a badass.
– Very few people in the Eastern hemisphere get UC or Crohn’s. These are maladies of the industrialized West. One day we will know why and keep people from getting sick like this.
– Losing my hair really sucked. It came out in clumps in the shower. That was one of the worst times in terms of feeling attractive (or not.) The stoma was rough; in some ways, losing my hair was harder. A female thing?
Disappointments – In a hospital in Tucson, AZ, in ’09 or ’10 (ER trip while visiting then-husband) I looked at my frail, perforated body and all the medicine bags hanging around my head and thought, “I will never, ever hate my body again or tell myself I should lose five pounds when I don’t need to.” But I still do that.
– You can’t go back. You can never be ten years old again, happy, healthy, running through the yard in bare feet.
As the well-wishes and words of kindness came in last night/today regarding yesterday’s post, I felt subdued and grateful. I also became concerned that the sharing of my UC story thus far was potentially taking up too much air time in people’s heads, thoughts, prayers, etc. I shared the first half of the timeline with a desire to inform, possibly assist, and maybe even entertain (seriously, you can’t write this stuff.) But when the compassion came at me from all sides I suddenly felt guilty that I had directed all of this energy at myself when really, we’ve all got botched j-pouch surgeries. We’ve all got a health crisis.
We are all temporarily abled. That’s not just a politically correct catchphrase: it is one of the truest things I know. Our bodies are systems; systems fail. We are organic matter; organic matter gets infected, infested, and eventually rots away. There’s nothing to be done about it and to preface it all by saying, “Sorry to be morbid, but the funny thing about bodies is…” is to keep the yardstick in place that distances us from the reality of our rather absurd situation. It is my fondest wish that every person reading this is full of vim and vigor from their first day to their last, but it’s more likely that most of us will deal with significant health issues somewhere along the trek. Sooner, later, or now.
So hang my tale: we all need compassion. By virtue of being human, we all need loving kindness. It’s hard down here. And that’s when we’re healthy and well! Beyond that, many of us have diseases and afflictions that do not call for surgery and never will. There are those among us who are quite sick indeed but look perfectly fine. Those people need emails of encouragement, too. They need blog comments. And so it was that I felt I had gotten too much of the universe’s healing energy yesterday and today. I will send some along to the next fellow with your regards; maybe it will come back to you, as you also need it. Sooner, later, now.
With that, let’s dive down into the second half of what happened so far in my life, vis a vis being sick. When I returned to Chicago in ’09, things took a turn from awful to downright horrid.
Summer ’09 – My then-husband leaves for a year to train for the Army Reserves. A decision we made together proves disastrous. He was away, my entire world/existence was changing daily. A gulf formed that would never again be brooked.
August ’09 – I am declared well enough for the “takedown” surgery at Northwestern. The ileostomy (stoma) I had is poked back inside my belly and reconnected to the internal j-pouch. In theory, I should be able to continue my life now, albeit with a “new normal.”
September ’09 – My health rapidly deteriorates following the takedown. Turns out the leak has not healed. Waste is leaking into my abdomen from the pouch. I am hospitalized — can’t remember how many times — over the next few months. (Silver lining: I begin to make quilts for sanity preservation.)
October ’09 – “Bio-glue” is squirted into my j-pouch in attempts to “plug up” the leak. Bio-glue is what they use to glue heart muscles back together after surgery, apparently? While the glue does its thing, I am told “No food allowed.” A PICC line (my third; a mega-IV that is inserted via ultrasound into your arm and travels through a major artery to dump medicine/food directly into your vena cava) is placed and I am put on total parenteral nutrition (a.k.a., TPN, a.k.a., “feeding tube”.) Twice a day, I hook up a gallon bag of white fluid into a port in my arm and sit still while it is pumped in. I have several IR drains, as well. I am a ghost among men.
November ’09 – TPN and bio glue deemed a failure. Pouch needs more time to heal after all. I will be re-diverted. (Translation: I will get another stoma.) Surgery at Northwestern. This time, I get an epidural. A psychiatrist visits me in the hospital post-surgery and recommends I go on an antidepressant. I take her up on that.
December ’09-’11 – Life continues apace. My marriage falls apart. I continue to work as a freelancer, building Quilty and doing work in the theater in Chicago to take my mind off my health issues and my broken relationship. Bag leaks in bed, painful rashes, etc., are par for the course with the second stoma as with the first but it’s a known quantity, at least. I begin to practice yoga with obsessive drive: I make deals with the universe that if I get healthy enough before the second takedown a year from now, I will make it.
June ’11 – Second takedown. Northwestern. Epidural. Things go well.
Fall ’12 – After a shaky but decent year, things begin to crack. I have a fissure. I also have a fistula. (I leave those things to you to look up. Do not image search.) Various methods are deployed to deal with these issues. I work harder than I should, afraid at any moment of hospitalization. There are several, usually related to the fistula or flora issues in my ruined guts. I make a series of self-destructive choices. I am wildly productive.
Fall ’13 – The fissure has come home to roost. I am crippled with pain. An ambulance comes to my condo to get me on the worst of the nights; they break my front door. I get into a pattern where I know when the fissure is about to do its worst; I frequently take the bus up Michigan Ave. to the ER. Hospitalizations. Pain medicine. Lying to everyone about how bad it is. Describing the pain to someone, I say it’s “like having a gunshot wound that you sh-t battery acid out of approximately twenty times a day.” (I stand by this description.)
Then, up to now – Good days, bad days. I got a pain doctor who recommended an internal pain pump. This is a morphine drip, essentially, placed into my abdomen, which I then pump when I feel the agony coming on. I decline, not yet ready for another apparatus. Probiotics. Lost days. Days packed so full, no one will notice the ones when I’m useless.
Remember, this is the timeline of the health crisis. One only needs to look back at PaperGirl, or the issues of Quilty magazine or the shows, or the other shows, to see that life has been much more than just this list of woe and setbacks. Joy and wonder, and gifts abound in my life. Success and learning and all kinds of wonderful life has been lived since 2008. And there have been all sorts of failures and good, old-fashioned crappy (hey!) days that had nothing to do with any of the body stuff, too — that’s the real kicker. Good, bad, or otherwise, though, this timeline is a specter. My experience and condition don’t define me, except that both kind of do.
I am going to make cookies for Yuri now. Good grief! [Correction: Cookys! I meant cookys!!]
For folks who might be new to PaperGirl and/or my intestinal odyssey, I thought it would be appropriate to offer a brief timeline of events. I write it down less out of a desire to, you know, write it down, than to inform those who without it might draw incorrect conclusions about the trajectory of my illness or fail to see the pretty extreme case it represents. Most people do not experience the trouble I had with all this. If you thought what has happened to/with/at me is what happens to anyone with UC, you would be (blessedly) wrong, even though there’s no good way to have this intestine-chewing chronic condition.
It’s remarkable to me how many people, upon learning that I have experience (!) with ulcerative colitis, will say, “Oh, dear. My [family member, kid, self] has had Crohn’s since 2006; I know just what you’re going through.” Too many people say this. [EDITOR’S NOTE: Oof, that came off wrong, I think. I meant that “too many people have these diseases,” not that too many people offer their empathy! Heavens!]
Warning: I’m not going to mince words, surgeries, or diagnoses. Again, in the interest of providing information for those who are perhaps facing a diagnosis, or for those who care to know more about a worst-case scenario, I’ll give you the straight dope on what’s happened to me up to the present day. It’s like I’m donating my body to science without having to die! Yet!
August 2008 – Over the course of several months, the weird symptoms I had experienced on and off for years grow grim: I am passing quantities of blood and what seem to be chunks of tissue. The month or so before I go to Mayo Clinic, I am using the toilet 30 times a day.
September 27th, 2008 – My wedding day. No symptoms. Blissfully happy.
October 20th – Mayo Clinic. Drive through the night. Doc takes one look at me and sends me to ER. I am put on heavy steroids and NPO (“nothing by mouth,” not even water, for fear one sip will burst my colon) for seven straight days; this does exactly nothing to my colon, which is “in shreds,” as one doctor put it. I am diagnosed with advanced ulcerative colitis.
October 15th-ish – Surgeons tell me I have two options but really only one option, since the steroids are not working: J-pouch surgery. This is where they remove your entire large intestine and fashion a new plumbing system for you out of your small intestine, called a “j-pouch.” While this new plumbing heals inside your body cavity, you pass waste through a temporary ileostomy, or stoma. A piece of my small intestine will come out of my tummy and I’ll wear a bag, in other words. I “choose” the surgery. I ask when it will be. “Tomorrow,” says the surgeon, and I sign on the dotted line. It snows in Minnesota that night.
October 20th – Surgery. I wake up screaming. Insufficient anesthesia.
October 20th-November 20-something – Everything that can go wrong has gone wrong. I have abscesses, infections. There is a leak in the new plumbing. This is not typical. An NG tube is placed. A PICC line is placed. Many IR drains are placed. My insides are “bathed in pus,” as a later doctor would say. TPN (feeding tube.) Thirty-pound weight loss. Horror show, fun-house-sized syringes extract fluid and pus from my abdomen. Stoma separation occurs, which means my tummy pulls away from my stoma and there’s an infected moat around the thing. My then-husband and mother are living at the hospital, basically. I am on a Dilaudid pain pump and live in a world of stoned dread interspersed by visits from residents with bad news. Mom asks lead surgeon if I’ll die. “I don’t think so,” surgeon replies.
November ’08 – Home to Iowa. Full-time care needed. Mom flushes drains daily. Husband gives Heparin shots. Everyone is depressed.
November ’08 – February? March ’09? – Skeletal. Sick. Why am I not getting better? Trips to Rochester, MN through ice and snow. I remember very little, then or now, of this time.
Spring ’09 – Return to Chicago. Ditch Mayo for Northwestern. Infectious Disease team finally cures the bacteria swimming in my gut. I begin to eat again. Stoma healed.
…and I actually have to pause here because this is when the really bad stuff happens and I’m a little exhausted from recounting this much, frankly.
Second half of timeline tomorrow, if you dare. Get some cake, maybe!
Moving to a new city means finding a new salon, a new grocery store, a new bank branch. For me, it also means finding new doctors. On my shopping list: GI, OB-GYN, primary care, anesthesiologist, and possibly a colorectal surgeon, but I was crossing my fingers that last one could wait. Looks like not.
It’s not that I want to have all these doctors. I’d like to have zero doctors (no offense to any physicians out there) but that’s not realistic for me. My case file is the size of an oak tree stump: I need people with stethoscopes in my life. And so I did some hunting and found a primary care doc I like and he has so far made good referrals to me.
On Wednesday, I saw my new GI. It was my second visit. He was wearing a bow-tie this time. If he had been wearing a bow-tie on my first visit as well, I might not like him as much as I do. But he is a man who clearly varies his bold neck-tie choices; this causes me to put more confidence into him as a physician. Sure, it’s solid reasoning.
Dr. L. is concerned about me. I’ve got some issues that aren’t going away since my last surgery in 2011. Sometimes they hang out off in the distance, sometimes they creep into the frame and cause real trouble, sometimes they come in and kill everything.
“Have you ever considered…” Dr. L. paused, and set down his pen. What he was about to say required full eye-contact.
“Have you ever considered going back to the ostomy?” he asked. He paused. “Choosing a permanent ostomy, I mean?”
I didn’t say anything. “Choosing” is not a word that has come into play much in the years since I was diagnosed with ulcerative colitis. Not in doctor’s offices.
“The troubles you have, they would go away with a permanent ostomy,” Dr. L. said. “It’s a big decision, I realize that. But…” I was staring at my feet. My feet were dirty because I live in New York City now and New York City is filthy and I was wearing sandals. My feet looked cute and filthy. I thought about how my sister and her fiance Jack went to Tokyo for New Year’s and Rebecca told me all about how in Tokyo, there are no garbage cans. Everyone packs their trash in little bags and throws everything away at home. Toyko compared to New York!
“I’m not sure I’m ready for…” I trailed off. “I don’t know.” My voice was a croak. The ostomy. Permanent. I thought I was done.
My throat felt tight and hot. Though my body is often weak and I live an inconvenient, painful, and senseless physical existence (as it relates to my guts) 80% of the time, the one thing I have going for me is that there is not, presently, a bag affixed to my abdomen that catches excrement that oozes out of a pulled-out piece of my intestine. I did have one of those bags and one of those pulled-out pieces of intestine for about three years, in total. Not great.
But what I deal with now is also not so great.
“Do you think,” asked Dr. L., “That your partner would be okay with something like that? Do you think he would be…understanding?”
My heart clenched. An inward moan. Yuri.
“I don’t know. I’m not quite ready for that, Doc,” I said. No crying, no crying. “He’d be wonderful, sure, but… I’m just not. He’s younger, you know, and I just, ah…” Tears were forming and I needed to stop the conversation immediately. “I’ll think about it.”
“Okay,” said Dr. L. with a kind smile. “I’d like you to see a colorectal surgeon about a treatment we can do for you in the meantime.” He then explained the treatment, and I was glad he did because it’s so awful, it got my mind off the ostomy. I could instead be horrified by what the surgeon will do to me (for me?) in a few week’s time. Much easier to focus on that and my filthy feet.
“Thanks, Doc,” I said, and got the surgeon’s name and number. “I like your bow-tie, by the way.”
“Thank you,” the doctor said, and went out the door. I hopped off the exam table, removed my paper gown, and got dressed to go back out into the city.
It’s not often one does a google image search and comes up totally empty-handed, but if you’re searching for something truly obscure, it’s possible that there will be a “No results found for [blank]” message. To give you an example of how rare an occurance this is, I tried to think of something that for sure could not turn up any image results whatsoever. I typed in “Beckett peanut butter sandwich.”
Tons of results. Thousands.
It came as a great surprise, therefore, when I entered in (in quotes) the common phrase, “the picture of health” to find an image for this blog post and got the “No results found for ‘the picture of health'” message. Really? That surprised me. Though there were images for the picture of health without quotes, they were not what I expected, really. I suppose I thought I’d get beaming cherubic children, or expensive stock photographs of doctor/patient interactions, etc.
The best of the lot was the above picture from the Department of Health Sciences and Technology in Zurich. It’s unclear what’s going on, here, but there’s at least one object visible there in the office that one is not allowed to touch; judging from the intricacy of the robot-lobster the older fellow is strapped into, I suspect there are a few more.
I wanted to find a picture of the picture of health to be ironic. I’m not exactly the picture of health but I’m better than I was on Monday. This whole week was a bit of a wash, I’m afraid. When I was actively feeling very poorly, I was flat on my back. That was a couple days. Then there was a Doctor Day, when I got some disturbing news that I’ll share tomorrow (too tired, psychically and physically, at the moment, to go there), and then there were a couple days of Getting Back on My Feet. Today, I was hale and hearty enough to finish a quilt top and eat some chorizo scrambled eggs, so I’d say ground has been gained.
Thank you to all the well-wishers — you shall be justly rewarded. I’m not sure how or when or if I’ll have a lick to do with it, but surely something positive must come when we send funny texts and things to those who need a laff.