Not the whole thing. It’s the righthand side. The righthand side of my tongue hurts a lot.
The reason it hurts is because there is a sharp, thin wire in my mouth that has broken away from where it ought to be and every time my soft, wet tongue moves in my mouth, it scrapes against this sharp, tiny wire. Over and over and over, when I say words, or eat, or just swallow, this wire stabs or scrapes my tongue. This started on Friday afternoon and now it is Sunday night.
Well, I got half-braces. I got brackets/braces on my bottom front teeth because a) it was what I could afford and b) … Well, I’ll tell you later because it’s a good story. Anyway, I got six brackets and a wire on the inside of my bottom row of teeth and this situation is called “sublingual” braces.
I’m trying to be a trooper, but so far, my sublingual braces have not been fun.
This is the fourth time I have had a crisis (relatively speaking) with my sublingual braces. Twice, a bracket has popped off my tooth and I’ve had to go in and get it repaired. And twice now, the resin they melt onto the end wire (so that the wire can’t poke my tongue) has broken off, which is bad. I’m really, really hoping this is just the way it is with sublingual braces and that I don’t have a terrible orthodontist. I also hope I’m not the reason this is happening, but I don’t think so. I’ve been eating soft foods and being careful to take care of my sublingual situation. My caramel popcorn and hard pretzel days are over, if you will, and have been over since I got the dang things installed.
This pain in my mouth … It’s tyrannical. I can hardly think. The whole world is my mouth. My tongue specifically.
And there are people — Buddhists?? — who would say, “Mary, the pain in your mouth is an opportunity. This torture you feel, the way the whole world has shrunk and you can think of nothing but the pain in your mouth, this is a chance to really experience the moment; you can really be present because your focus is so focused on this sensation.”
What are you, nuts?!
You can have your enlightenment. I wouldn’t wish this “sensation” on anyone. My tongue is swollen. It’s been stabbed for two days, traumatized and raw. What’s more, I’m in Portland till tomorrow night, so I can’t see my ortho till Tuesday at noon. I’ve tried to stick wax on it (which has worked in the past) but the wire that broke and is poking is too close to the gum line and the wax won’t stick. I actually cried earlier tonight when, after the fifth time trying to coat the wire so that it wouldn’t poke my tongue, it slid immediately off. Again. I put my tongue down and the wire burrowed into my tongue once more. It’s starting to drive me a little bananas
We’ve all had bigger problems. But mouth pain is tough — and I am no Buddhist. Here’s hoping your tongue goes un-persecuted this night!
My post from a few days ago was a real cliffhanger — and then I kept you cliff-hanging. I’m sorry about that. There are a lot of spinning plates right now and sometimes I have to set a plate on the shelf for a second and rest my … what, fingertips? My plate-spinning stick? How does plate-spinning really work? Any actual plate-spinners out there, leave your remarks in the comments.
Also, this post has been incredibly hard to write for reasons that will soon be obvious. I’ve been dragging my feet.
Where was I, before time was up? Oh, right: Raw almonds for breakfast. If you haven’t read Part I, do that and then brace yourself for some extremely unpleasant (and personal) anatomic details.
The colon, also known as the large intestine, is a kind of shop vac: It sucks up the fluid from what you eat and drink so that the body can make solid waste. Then it holds onto … all that for a period of time and then, you know, you get rid of it. My shop vac was removed 10 years ago because it was, in the words of the surgeon who really messed up my surgery, “completely gone on the left side.”
What this means is that I don’t produce solid waste and never will again. I can eat things that are better for my condition and things that are way worse for it, but to go through a list of good vs. bad foods is a pointless exercise in many respects; what works only sometimes works and what doesn’t work for awhile suddenly isn’t so bad. But almonds are bad, full-stop. Which brings us to the second dignity-sucking feature of this tale and honestly, part of the reason I delayed in getting back to it. Let’s talk about fissures.
A fissure is a tiny, usually thread-thin crack between one thing and another. A fissure is relatively (very) narrow and not jagged; it’s not a rip or a tear, exactly. You can see fissures in rocks. Hairline fractures in bones would be a good visual. Fissures can happen in body tissue, too, and when they happen, it is bad. I had a fissure at the tail (!) end of my digestive tract and that is as much as I’ll tell you in terms of anatomy because we all know what I’m talking about.
My fissure arrived in late 2013 and was diagnosed as “acute” and “chronic”. Because I no longer have my shop vac, remember, I go to the bathroom a lot during the day and through night. Way more than most people, even with my J-pouch surgeries. If you have a fissure where I had one, the last, last, last thing on the planet you want to do is go to the bathroom. And at that time, because I didn’t know I was allergic (or had a reaction to) almonds, I was typically going 8-9 times a day and as many times through the night.
The pain of my condition bent my mind. It eviscerated my will, my fortitude, my spiritual condition. I squalled like a newborn. I babbled incoherently to no one as I pep-talked myself into going back to the guillotine, aka bathroom, over and over. The cramps were terrible. I had to go. And when I went, only an acidic trickle would come and I clawed my thighs until they were scraped and raw, too. It was a dark, dark time. And I told very few people about it. I didn’t tell you much about it, did I? Why?
It was so embarrassing. And the doctors said the fissure would likely settle down, though it will probably always be there, I understand?) A surgery that can be done as a last resort, but it’s not always successful; besides, the thought of more surgery in my GI tract — anywhere, anywhere in my GI tract — sent me into further paroxysms of despair, so I did not allow myself to see surgery as an option. Also, I am tough, Midwestern, stoic. Also, I tend to isolate. I’m a writer, by nature an introvert. And you bet I was depressed, for obvious reasons. And when you’re depressed, you just … You know. Nothing.
Look, the whole reason I’m telling this story is because I don’t recall anyone ever asking me what I was eating. And I think that would’ve been good. Raw almonds can cause diarrhea. And when you’re going to the bathroom as much as I was, the fibrous skins are really, really hard on a bottom. Why didn’t anyone help me put this together?
Before anyone gets arch please remember what I have written many times over the 12+ years of this blog: My doctors, surgeons, and nurses saved my life on several occasions and, if I can find new ones, medical professionals will help me live a long time. I’m not hating on doctors. I’m just bewildered, as usual, by the chaos of it all.
Good grief, let’s wrap this up, shall we? I rarely give advice, but here’s some I feel good about:
If you know someone with a J-pouch; IBD; Crohn’s; Ulcerative Colitis; diverticulitis, or any serious affliction related to the intestines, ask us about their diet. But — and this is so important — don’t tell us what to eat or suggest we do this or that. It’s so hard to be told, even by well-meaning people, that you’re doing eating wrong. (For example: The German and the Russian both pushed yogurt on me constantly and made me feel like a failure because I didn’t consume quarts of it daily.)
Telling a person, “You should eat this” or “[X] is a magic food for the gut” is different from just asking what’s in our diet. Asking us what we eat from day to day gives us an opportunity to think about it. Maybe there is something we could do differently. I mean, it’s crazy: If I have even a touch of almond milk or eat something like I did the other day that has raw almonds in it, it’s awful. But I didn’t know for a long time.
There you have it, my suffering GI Janes and Joes. Here’s the question:
“Shh … Shh. It’s gonna be okay. Deep breath. Why don’t you tell me what you’re eating, honey. Let’s start there.”
I accidentally ate a food that has almonds in it and now I wait for suffering. That’s not me being dramatic. In about two hours, it’s curtains for me.
First will come the twinges of pressure, followed soon by the first cramp. Then the gurgle. Then the clutch. The clench. And then it’ll begin: I’ll be in and out of the bathroom many times. How many times? Many. It’s likely I’ll cry at some point because when you’re in and out of the bathroom as many times as I’m about to go, there are breakdowns. First come the soft tissue breakdowns, if you catch my drift? Then, because of that, emotional breakdowns are likely. I’m in for pain tonight.
Rather than suffer in silence, I decided this was a terrific opportunity (woo!) to tell you about my problem with almonds so that you can benefit from it or relay it to anyone you know who suffers from GI distress of any kind; most specifically, someone like me, who possesses a J-Pouch. Warn them that for a dear friend of yours (that’s me) almonds are a hellscape of torture and agony and, if they are like me, these nuts should be avoided at all costs.
[If you aren’t sure if someone you know has a J-Pouch, you may not know them well enough to ask; if you’re kind and the two of you grow closer, however, they will eventually tell you about it. If you have a J-Pouch, youdefinitelyknow. And for all those who don’t have their very own J-Pouch and don’t know anyone with one, please keep reading, as this post is for you, too. Life is long and you may very well use this information later.]
I’ve heard that folks with Diverticulitis can’t eat popcorn or things with seeds, e.g., strawberries, “everything” bagels, etc. The trouble is that super-small stuff can get caught along the way and I understand that when this happens it can be blindingly painful, often requiring a hospital visit.
But for me, popcorn is great. I have it (with a nice pinot noir) for dinner more often than I’d care to admit. Some of my other other brothers and sisters in the intestinal failure business can’t eat gluten — ever. I’m halfway in this camp and when I pass up gluten at a restaurant, I like to laugh and say, “Yeah, but I was gluten-free before it was cool.” In my case, too much gluten causes inflammation and for a girl whose large intestine immolated itself, keeping inflammation to a minimum is the way to go. But unlike people with an intense gluten allergy, I can have spaghetti sometimes and no one dies.
Ah, but almonds.
Let me take you back to 2013. You’d think the worst chapter of my health odyssey was Ground Zero, ten years ago, at Mayo Clinic, when they removed most of my guts and screwed up the surgery. You’re half-right but half-wrong, too, because five years later, every IR drain, every PICC line, every setback and ostomy separation at Ground Zero went head-to-head with the chronic fissure that showed up and utterly ruined me for at least a year. The fissure ruined me 24 hours a day, 7 days a week, endlessly, always, constantly, during that time. The fissure became the axis around which my entire life revolved. The fissure became a piece of my consciousness. The fissure was my slave-driver, and I use that term with an understanding of its revolting definition.
And in all the hospitalizations (I lost count); the sick days; the awful ways I tried to cope with the problem (you’ll have to wait for my tell-all memoir for that) — in all that time, no doctor, nurse, or well-meaning pal ever, ever asked me: “What are you eating?”
If they had asked me, I would’ve said, weakly, traumatized: “I don’t know .. Not much of anything because I’m so scared to pass it … In the evening, I’m probably drinking too much Chardonnay because, ha, ha, it isn’t solid … Um, for breakfast … Oh, I eat almonds and Nutella in the morning, usually.”
That’s right. My breakfast for many months — because it made me happy, it was easy to prepare, went great with my Earl Gray tea, and was gluten-free, which was supposed to be a good choice for me — was a handful of almonds in a pretty teacup with a dollop of Nutella on the top. Who wouldn’t want to eat that, right? And I wasn’t supposed to eat toast, after all. Gluten bad. So Nutella and almonds are what I ate. Day after day.
And day after day — ah.
Sorry. It’s time to go. I’ll pick this back up tomorrow, and I won’t make you wait. But I can’t wait. Because it’s starting.
A couple months ago, I got a letter from Humana, the company with whom I’ve had an insurance policy since 2004. The letter stated that my individual medical plan would be cancelled as of December 31st, 2017.
No explanation. No apology. Just cancelled. See ya.
This post is not about healthcare policy. I’m not interested in debating about healthcare offered by the government, companies like Humana, or anyone/anything right now. Even if I did, I wouldn’t do it here. And I know — I am 100 percent certain — my beautiful readers are way too classy to spiral into goofy and/or cruel arguments about healthcare policy down in the comments section. I believe such conversations are best had on Facebook.
This post is about healthcare, though. As in, the care a gal gets with her health and how sometimes it’s frustrating in certain small ways.
Because of my cancelled policy — which, by the way, kept me and my family from going bankrupt over the years of so many hospitalizations and surgeries — I have to find all new doctors. None of the doctors who saved my life are in my new network. There’s really no way around it. Either I find an entirely new team who accept my insurance or I keep my doctors and pay completely out of pocket. Paying out of pocket is not something I can do unless I suddenly become a millionaire. I’ll let you know.
Doctors I am currently shopping for include: Anesthesiologist; Gastroenterologist; Family Medicine/General Practitioner; Gynecologist; Psychiatrist. And a phlebotomist, though they’re slightly easier to find.
It’s daunting. I’m haunted by the fact that the new docs don’t know me the way my other doctors at Northwestern have known me for so long. All my records are at Northwestern. For everything. All my docs, until now, were all on the same campus, using phones with the same first six digits. Until now, all my docs knew each other — or at least knew of each other or could get to know each other in the cafeteria or whatever. I feel like I had a medical home and I got evicted. And I didn’t even do anything. I was paying my rent every month. I was doing what I’m supposed to do. I was being responsible.
But this is how it goes, I guess. Whining won’t help. So I’m making appointments, doing my research. I don’t have time for this huge job, but what’s more important than to have a team in place in case/when my body revolts? When you have my health history, getting this stuff in place is important.
It stinks when you meet with someone who definitely won’t work out. It happened recently. It’s happened before, too, this particular thing, but it was harder this time because of my feelings of being in hospital/doctor limbo.
The gal who was entering the stuff into the computer was a nurse practitioner, I think. I’m not totally sure, but she wasn’t the first person who took me into the room to do the pulse-ox and blood pressure stuff. But she wasn’t the M.D. I was about to see, either, so I’m thinking she was a nurse practitioner, which is fine; I’ve worked with and been helped by many.
Unfortunately, after I went through the short version of the long story, this person did the thing that makes me feel bad, small, unseen, and empty. She did the thing that made me feel some hideous blend of despair and anger. After telling her about my j-pouch, my ostomy, my takedown, my second ostomy, my second takedown, my anemia, my fissure, and my fistula, she asked:
“So when was your last colonoscopy?”
My breath caught. I squeezed my eyes shut. I made sure my voice was steady before I used it.
“I … don’t have a colon.”
“Okay,” she said. “So …”
“I don’t have a colon,” I said, “so I don’t have colonoscopies. Anymore.”
“Okay, when was your last one, though?”
I’m no medical professional, but this question is irrelevant. As in, it has zero relevance to me, my situation, and my needs. But — if the lady insists — the last colonoscopy I had was the one in 2008, at Mayo Clinic, when I was admitted within five minutes of my arrival; the one they couldn’t complete due to the state of my large intestine being “totally gone on the left side,” suppurating and bleeding, bleeding and in tatters, hours away from bursting open and ending mademoiselle in a rather agonizing and undignified way, thank you very much.
Yes, I’m upset.
Because when you’ve got a doozy of a story like I do, going through it again (and again, and again) is hard. Bad memories come back. I do not use words like “trauma” or “flashback” lightly. When I say I have trauma from the lowest points of my illness story, when I say I have flashbacks when I go through the timeline, I mean it. But it’s 10 times harder when you’re going through it with someone new — because you’ve just lost all of your doctors — and you get through it only find you were not heard or understood. Because that feels like the person who was supposed to be listening doesn’t care. She might! She might care! But it doesn’t feel like it. And when you’re me, alone in a doctor’s office, talking about your belly, feelings are everything. Feelings are in charge.
Asking a girl nine years out from a total colectomy when her last colonoscopy was is like asking an amputee if she’s had any ingrown toenails lately. It’s like asking a blind person to look up at the chart and read the smallest line she can make out.
I don’t have a colon. It was removed. In its place, a bag. With the bag, the end of innocence. Please listen when I tell you these things, doc. Please don’t ask me about the organ they took out of my pelvis and threw into the hazmat bin before I woke up. I don’t have that piece of myself. I don’t know her anymore.
What I do know is that people are just doing their jobs. I know that. I owe my very life to the doctors and nurses who have cared for me. I’ve praised them often here on the ol’ PG. My new team may have the opportunity to save it again, we don’t know. I hope not?
So I forgive the gal with the computer and the long day, I really do. Who knows what was on her mind? And I’ve asked plenty of questions in my own life that showed I wasn’t listening or that I didn’t understand. No one does it right all the time. Not her, not me. Not the people who run insurance companies or governments, either, but I think those people should all try way, way harder.
Thank you, thank you, to the ladies I spent time with in Michigan yesterday. What a great day it was! The leaves on the drive up and drive back were stunning — but they had nothin’ on you, girls.
In other news, I did a lot of food prep in the kitchen this evening because tomorrow, difficult as it’s going to be, I will begin a round of my dreaded-but-amazing “reset” diet. I’ll tell you what I mean in a second.
My guts have been having a hell of a time this year because I’ve been eating with no regard to my intestinal health. Being so gimpy in the gut department, I’m supposed to avoid certain things and generally eat foods that have been stamped “anti-inflammatory.” Yeah, well, guess what my favorite lunch is when I’m zipping from one thing to the next? Pizza, of course — and we’re talking a cheesy, saucy slice from Pauly’s around the corner, not some kind of gluten-free, “mock” pizza made on a cracker and a prayer. (You think that’s gonna get this woman through two classes, an advising session, a trip to Michigan, and three writing assignment deadlines? Ha!)
Beyond that, I’ve been enjoying a falafel here, a coffee and almond croissant breakfast there, and so on. Not a lot of veggies. Lots of pasta. And oh, the sugar … Sophie gave me a whole bag of candy corn punkins’ last weekend and they’re gone, now.
The good news, I guess, is that at least I don’t see that my wack-a-doo grad school diet has gone to my hips; this is probably on account of all the walking and/or literal running I do every day to get to all the places to do all the things. The bad news is that intestinally-speaking, I’ve hit the wall. My tum hurts all the time and I’m so sick of constantly excusing myself to go to the bathroom. I take medicine for this stuff but my belly situation doesn’t have to be this tough. I can manage a few things, diet-wise, and make it better. So it’s time.
The last time I did the Specific Carbohydrate Diet (SCD) was a couple years back, when Yuri and I were in New York City. I was having a very, very hard time with my health situation at that point, so I did the reset and yes, it helped. Read this and you’ll understand what I’m beginning tomorrow.
I’m telling you about this because I need to stay accountable — and I also need support. Embarking on this “medicine” is not easy. When I wake up tomorrow, I’ll be waking up to a long week of nothing but hamburger, homemade jello, and homemade yogurt. And chicken broth. That’s pretty much it, and it’s not so fun.
When you bear incessant knocks and rumbles in your belly like I do; when you are exhausted/demoralized from the daily effort of endless bathroom trips; when you want to remember what it was like before you had a bowel disease that took you down hard, a tough diet doesn’t feel so tough.
I’m going to show you a homework assignment. For my Literature of the Senses class this week, we’re to write short pieces on the sense of taste. These are just one- to two-page writing exercises and I’ve put this together. I blogged about ramen noodles some years ago, and I did look back at this entry for reference, but it’s entirely retooled, as you’ll see.
It’s hard to write stuff and it’s hard to write about hard stuff. It’s hard to think about hard stuff that happened. Maybe I should go bake cupcakes or something. Mmm … Cupcakes.
Anyway, here you are.
As a young woman, many times had I fervently wished I could zap my appetite into nothingness so that I could slim down for the summer or whatever. It seemed so simple: Just don’t eat. I was never able to not eat, though, and usually not able to eat even slightly less. My appetite was stronger, in the end, than my desire to own smaller jeans.
But when I was dying in 2008 from failed abdominal surgeries related to advanced Ulcerative Colitis, my appetite really did vanish and it stayed gone for a dangerously long time, entirely without me trying. It turns out that having no appetite is a woeful, morbid thing.
My body knew my intestines were failing, so the appetite mechanism was doing me a favor by closing up shop. If nothing came in, nothing could leak out, internally. But my doctors and my family desperately needed me to eat, even a little, so that I could heal. If I couldn’t manage to start getting some nutrition, a feeding tube was in my future.
It was frightening to want nothing to eat, to snap my head away with a grimace when food came close to my mouth. It was alienating in the extreme that spaghetti with marinara sauce, my favorite food, did nothing to stir my appetite. I desired nothing. I craved nothing. There would be days at a time that I consumed only air and the dry skin on my lips as I chewed them whenever the doctors would call with test results, which were usually bad.
“Mary, honey,” my mother would ask, coming into the living room. “What would you like to try today?”
Every day, it was the same. The proposition of selecting and then trying to get food down was as exhausting as flushing my four IR drains, which had to happen twice a day.
“I guess ice cream,” I’d say, my voice barely above a whisper.
But when the Haagen Dazs hit my tongue, even if it were praline pecan or butter brickle, which in former days I would’ve devoured, I never managed more than two bird-sized bites before I had to set down my spoon and sink back into the couch, weary, baffled, and still unfed, the cream turning sour in my mouth. I was down to 118 pounds, 117, 116 …
We tried bacon. We tried mac n’ cheese. We tried bacon mac n’ cheese. We tried pudding, crackers, chips. Lasagna, Cap’n Crunch, sushi, tacos. Everything was revolting, everything was too much. I missed my appetite, which is to say I missed being part of the human race.
Then one day, when my mother asked me what I might like to try to eat, for some reason I blurted out, “How about ramen noodles?”
I meant Top Ramen, of course. The brick of noodles you get six-for-a-dollar with the flavor packet inside each plastic pack. Mom ran to the store and got a bagful. When she brought me a bowl of the piping hot noodles, for the first time in months, I felt hungry.
The cheap ramen was salty and easy to swallow. It was fun to eat, too, those long, curly noodles and the bullion broth free of bits, chunks, or vegetal matter of any kind. It is a benign food substance, Top Ramen. There is nothing to avoid, nothing to pick out. One can surrender to simplicity, to plainness. It is the anti-foodie food. The nutritional value may normally be in question, but for an invalid like me, the 400 calories of starch and salt were 400 more than what I was getting before and for some reason, my body accepted Top Ramen. I wanted to eat it and eating it did not make me sicker.
Every day, I ate the Chicken or Beef flavored ramen for breakfast (never Shrimp, gross.) The life-force noodle soup was my sole meal of the day. I even looked forward to the moment when my mother would bring it to me after I had had another interminable night on the couch, vomiting into my bowl, leaking sh-t from my ostomy bag onto the covers. Not every night was that bad; some were worse.
It makes me cry to think of my mother, there in her red bathrobe, coming in with a chipper smile and the wooden tray with the big bowl of Top Ramen for me, a cloth napkin, a fork, and a wide spoon. She’d place the tray on the big trunk we used for a coffee table and say, “Bon appetite, sweetie.”
“Thanks, Mama,” I’d say, and I’d start to eat, slowly, bringing a forkful of noodles all the way up, high above my head. I’d tip back and open my mouth, lowering the ramen slowly down onto my tongue and the day would begin that way, looking up at the ceiling, tasting the rich, savory broth clinging to the noodles. I would let it all slip down my gullet, hardly needing to chew.
You remember, don’t you, how I narrowly-avoided an ER trip — it has been known to happen — but got my iron infusions and avoided that at the eleventh hour? That was great. Less great is that my dentist, Dr. Tahbaz, confirmed that my ice-eating was probably the main culprit for my busted filling.
Pop Quiz No. 2:
Q: My dentist visit cost $250. Guess how much my iron infusions cost?
A: $3,600. After insurance.
I’m not sure what my face did when I opened that bill from Northwestern. Did it twist? Or was it flat? Did it buzz and fizz or was it numb? I don’t know because I kinda blanked out. I regained consciousness somewhere in the next few minutes, though, because I remember that I started laughing. Not because I was happy, or because anything was funny. No, I started laughing because I somehow kept opening mail and it somehow kept being bills for astronomical amounts: hospital treatments, tuition for grad school, condo payments. And I pay my own taxes, so I have to put money aside for that every quarter, which means that the money in my accounts isn’t really mine. I kept laughing to keep from crying or hitting things.
Life, man. A girl could just gnash her teeth all day over it all.
Except that she can’t. Because guess what else the dentist told her?
“You need to get a mouth guard. You’re grinding your teeth at night. A lot. Get a mouth guard. Today.”
It’s not earth-shattering news that I grind my teeth. I vaguely remember other dentists mentioning this to me. But either they were never really that concerned about it or I wasn’t listening, because no one ever did anything about my bruxism. Did you know that teeth-grinding has a name? It’s a real affliction/condition and it’s called bruxism.
Pop Quiz No. 3:
Q: If you’re a teeth-grinder (tooth-grinder?) and an annoying person at a cocktail party asks you about your theological, ideological, or political beliefs, how do you answer like a boss?
A: “I’m a Bruxist. Oh, look at the time.”
What I’m trying to get at is that I had to buy a mouthguard. The good news is that it was $25, not $250 or $3,600; the bad news is that I have a mouthguard I’m supposed to wear at night so I don’t grind my teeth against themselves but against a piece of inert plastic, instead. The news is bad because a) it’s sad I need protection against myself via the nocturnal manifestation of anxiety and existential angst, and because 2) mouthguards do not inspire a feeling of attractiveness, exactly. Mouthguards are practical, but they are not sexy.
But I like my teeth. Healthy teeth are sexy. So fine: I’ll wear my charming! clear! dainty! mouthguard when I’m sleeping alone. But should I have company, well, that thing is getting stuffed into the medicine cabinet before you can say “iron supplement.”
It’s been some time since there was a dispatch from The Pendennis Observer, the mini-magazine inside this blog dedicated to capturing Pendennis, my personal mascot/spirit animal.
As longtime readers know (Margaret Maloney, I’m looking at you), photographs catching Pendennis in the act of being the perfect stuffed animal are never posed or staged. The beauty of Pendennis is in the random gesture, his naturally floppy postures, those stick arms and legs all splayed out every which way. He’s just the best and he can always make me happy.
I had my pouchoscopy today and they did an upper sigmoidoscopy, too. Biopsies were taken from both ends. My friend Kristina came with me; I try to spread out the friend-hospital burden. K. was incredible. She brought me a coloring book and petted my head when I started freaking out. I get in that gown and I just lose it, you know?
Between Kristina, texts with Mom, and Pendennis’s little face — oh, and ice cream when I got home — the day turned out to be not so bad, not so bad at all.
One of the hard parts about not feeling 100% is that it’s advisable to rest, to stay put. I am terrible at resting and staying put.
On a physical level, it’s just plain difficult for me to settle down in a chair for very long. I’m up, I’m down. I sit down to sew and oop! Gotta get up for some ice. I sit down to write and oop! I’m up because I really should go get the laundry out of the dryer before I get too into things. I sit down to have my breakfast and oop! I’m up because I need salt. That kind of thing.
But that’s just the micro-level stuff. It’s hard for me to stay put on the macro level, as well. After a string of days laying low, I feel so off. I want to be leaping and leapfrogging and feeling fabulous but I feel logie and grouchy and antsy. It’s important to mention, by the way, my desire to leap and frog about does not mean I have a yen to go outside and catch butterflies or hike the Appalachian Trail or swim laps all day and then link arms with my friends and dance till the sun goes down (or comes up? I don’t know, I’m exhausted just thinking about all that.) Leaping and leapfrogging and feeling fabulous to me can be as simple as getting up and feeling good, then being productive at my desk and then maybe going to lunch.
When I can’t do these things, when doing laundry is hard not just because I’m iron-deficient but because I’m mildly depressed over being iron-deficient, it’s hard to get up over the fence.
Today, I did things that helped. It always starts with little things. I made a list that was manageable. Here’s what was on the list:
fold laundry (*good job for doing it yesterday!!)
go to the library to return your book
go to post office
answer pressing emails
And guess what? I did all of those things (plus a few more) and I feel better as I write this.
If my blog is ever of use, it’s because I can tell you what’s happening to me and then, if it’s happening to you and you identify, you won’t feel like you’re sitting by yourself. Maybe you’re not anemic, but maybe you’ve been sitting still and feeling weird about that or feeling bad about it. My suggestion is that perhaps you might like to make a short list. It worked for me today.
It’s not like I’ve been flat on my back. Well, okay. Today I was flat on my back.
My day consisted of 2.5 naps and 2.3 bowls of miso soup with udon noodles. The naps happened because I am spooky tired and can’t seem to keep my eyes open. The udon happened because my weak hemogoblins are demanding quick carbohydrates. Normally I stay away from the demon noodle, but these are desperate times. As a result of all this drowsy noodle eating, I feel sort of worse than I did when I woke up. I’ve got that sick-in-bed noodle daze thing going on, you know?
Not every day in the past week has been like this, but there have been long hours on the couch or in bed. It’s very hard for me to allow myself to spend hours this way, but what can I do?
Well, I can read. So I’ve been reading. Most notably, I read Angela’s Ashes in about three days.
If you were even dimly aware of pop culture in 1996, you know the book I’m talking about. Angela’s Ashes was everywhere, a memoir of author Frank McCourt’s boyhood in Limerick, Ireland in the 1930s and ’40s. McCourt wrote it when he was 69 after a lifetime teaching high school English in New York City. The book won the Pulitzer Prize. It won the National Book Award. Angela’s Ashes won everything there was to win. It was on the New York Times bestseller list for three years. Six million copies have been sold to date. Hollywood made it into a movie. There are a zillion translations. It’s canonical.*
As for me, I was in high school in 1996 and too busy blasting PJ Harvey records in my Honda CR-X to care much about a tale of a hardscrabble Irish boyhood, so I skipped it. And I never did get around to reading it because, you know, life and a zillion other books to read. And if I’m honest, I do get a little resistant to anything that popular. I’m not a joiner and honestly, could it really be that great?
Angela’s Ashes is a masterpiece. It is perfect. A perfect book. Angela’s Ashes is a work of art that became a part of me, page by page. I moaned out loud as I read, anguished to the point of pain at the crushing poverty, the death, the cruelty of circumstances endured by this family. My eyes stung as catastrophe after catastrophe befell them; my eyes sting now to think back to the characters I grew to love.
And I laughed out loud, of course, because Angela’s Ashes is funny. It’s so funny you can’t believe it. I was shaking my head at what I read, wiping tears from my eyes from the laughter (or was it the sorrow?) marveling at this man, Frank McCourt. Not only did he survive his childhood, he found the humor and joy in it, too — and then he wrote it down so well we can survive with him and spew our tea all over our pajamas because he’s so entertaining while we’re with him. (Ask me how I know about that pajama/tea thing.)
My experience reading this book is universal to the point of being uninteresting, I suppose. It’s safe to say that everyone who reads Angela’s Ashes is deeply moved. Oh, I’m sure there’s someone somewhere who tried to start an Angela’s Ashes backlash, someone who “didn’t think it was as great as everyone said it was.” We’re all entitled to an opinion, but I would have a hard time understanding how anyone could encounter that rich pageant of humanity and beauty and misery and reject it in any way. Frank McCourt made the world a gift in the form of a book. And the copy I read I checked out at the library, which means it was free.
All of that, for free. ‘Tis a great world, indeed, Mr. McCourt. Thank you.
*Read the book if you haven’t; read it again if you have.
I’ve been gone a few days on order from friends and my hemogoblins who told me to “take it easy, Fons.” Not posting for several days makes my eye twitch and my foot tap something terrible, so I’ll be back tomorrow even if I’m hunting and pecking at my keyboard.
Thanks to all for the well wishes. You’re pretty and you’re nice.
A couple years ago, I wrote about how I don’t freak out if I leave out a pot of soup overnight, how I’ll just shrug and stick it in the fridge and make sure I heat it up extra hot next time. I made sure to mention that there are strict limits to this “eh, whatever” kitchen rule and to never be afraid to come over for dinner, but a lot of you still thought I was weird.
This post is way weirder. But I’m going to write it because walking home from the library, I laughed out loud to myself just thinking about it — which was also weird, of course, but fun for the guys who hang out in the park by the library who saw me laughing to myself.
The precipitous decline in my hemogoblins over the past few months has, as I’ve mentioned, led to a steep increase in my ice consumption. As a number of you have so astutely pointed out, this ice-eating is a symptom called “pica.” Pica is “a tendency or craving to eat substances other than normal food, such as clay, plaster, or ashes, occurring during childhood or pregnancy or as a symptom of disease.”
There are many things to be grateful for: Not craving a glass of ashes or plaster is at the top of my list right now.
Ah, but frozen water counts as non-normal food and as my picamarades know, when you’ve got anemia and pica is upon you, nothing tastes as good as a big cup of really good ice. And you’d better believe that there’s good ice and less-good ice. There’s bad ice (e.g., cubes too large, over-frozen, etc.) There’s acceptable ice. There’s even ideal ice. As an almost compulsive ice-eater, I have become an ice connoisseur and I would like to now review some of the ice that I have sampled lately.
Though this is silly, I assure you: I devote a good deal of time these days to ice procurement, consumption, and evaluation. It’s unsettling to me how excited I am to write these ice reviews. But here we go.
Note: Ice evaluated on a scale of 1-5 on texture, flavor, melting rate, and ease of obtaining. All locations are in the Loop or South Loop of Chicago. In the case of chain stores, the management cannot guarantee quality/consistency.
My Condo: 4.5 My ice maker is broken (oh, the irony) but I have four ice trays that are awesome if I only fill them up halfway. If I only fill them halfway, when I pull a tray out, the ice gets melty in the trays and it’s really chewy. Picking ice cubes out of the tray like that feels sort of like eating a box of chocolates.
Hilton Hotel Cafe: 3.7
I sometimes take a shortcut through the Hilton if it’s cold or rainy and the cafe near the lobby has a self-serve soda machine: total score. I’ve taken a big plastic cup over there on several occasions for the semi-crushed, fresh-tasting ice, but I can’t get cocky. The lady behind the counter gave me the stink-eye the other day.
Pret-a-Manger, Michigan and Monroe: 4.7 This big-city chain cafe has the best ice ever. It’s thin. It’s crispy. It’s crunchy. The cups are big. I try to scam two full cups of ice from the folks behind the counter when I buy a can of Diet Coke but sometimes they say they have to charge me for a large beverage if I want one. If I’m feelin’ flush, I’ll do it. (Q: Has anyone ever planned a heist of an ice machine? Call me.)
Starbucks (Any location): 3.1
Starbucks ice is okay in a pinch, but it’s too hard. And you often get big bars of ice that haven’t separated into cubes. Do you know what I mean? I hate that. My hemogoblins hate it when that happens.
That One Falafel Place on Wabash: 4.1 An upset! This is almost as good as the crushed, almost snow cone ice that you get at a Sonic. (Now there’s some great ice — alas, no Sonics in the Loop.) Anyway, I like this place’s ice better than the shwarma.
7-Eleven on my block: 4.0 The guys who work there are very sweet and rarely charge me for a refill. They may be concerned.
It’s amazing to me when there are reasons for things. Most of the time, I am tempest tossed, continually bewildered to learn that effects have/had causes. My body is a mystery to me, even now, thirty-some years into having the one I was born with. I talked to my doctor today and all the strange things that have been happening to me for the past three months suddenly made sense.
First, the strange things:
My ice-eating has become almost compulsive. In the past two weeks especially. I crave ice all day. It’s so weird. I wake up in the morning excited about my first glass of ice. It’s never been like this. (I thought I was just being a weirdo.)
When I stand up, I have to hang onto something or stay very still for a moment and breathe, otherwise, I’ll stumble and maybe fall. (I thought maybe it was the medicine I’m on.)
I’m short of breath. (I thought I was just out of shape.)
Even thinking about doing a cardio workout makes me tired. (I thought I was just lazy.)
When I sleep, I am out in .2 seconds. When I wake, it’s like emerging from the grave — I have no sense of the night, no sense of having slept, no sense of feeling rested. (I thought I was just behind on sleep.)
My limbs are weak-ish. (Any ideas?)
Diet Coke is back in my diet because if I don’t drink a couple throughout the day (with ice, of course), I can’t make it. (I thought I was just more addicted to caffeine than usual.)
Without foundation and a good amount of blush, “washed out” didn’t quite describe my complexion. (I just thought I was a white girl who had just been through a Chicago winter.)
I’ve been blue. (Who isn’t?)
Now, a quick pop quiz, remembering that I call my “hemoglobin” my “hemogoblins”:
Q: What’s a normal hemogoblin level in an adult female?
Q: How low does an adult female’s hemogoblin level need to fall before she needs a blood transfusion?
Q: What’s Mary’s hemogoblin level right now?
This explains everything. I’m so tired. I haven’t been posting as much as I usually do because I’m just so tired. I try to make time for everything but it’s like working through mud, sometimes. There’s so much to do, and I was consciously and subconsciously doing the Have To’s and not all of the Very Much Want/Need To’s.
The reason I’m not getting a blood transfusion right now is that my insurance company won’t approve it unless I hit 7. The plan, therefore, is to get an iron transfusion approved and do that first. Me, I’d rather have the blood. Let’s cut to the chase, gentlemen. But it would probably be unwise to twiddle my pale, anemic thumbs until I dip lower and then do my best vampire impression, so I’ll take the iron infusion when they give the go-ahead. That should help. It’ll also cost $750 a pop, even with the insurance, and it usually takes two. Super.
Can I tell you something that is very honest?
I had a moment today after I got the Anemia Update and I wished I was at 5. Because if I was at 5, maybe I could be admitted for a night. Maybe even two. And I could just rest. No one would question it. Not even me.
That’s messed up, I guess. But sometimes, it’s like… It’s like you just need to get off the bus and have someone come in and take your vital signs and help you to the bathroom and bring you gingerale in a little cup with a foil lid.
A few weeks ago, I confessed that I had been putting off seeing my GI doctor out of fear of what she would tell me. Many of you sped to my digital side to give me a digital hug and say, basically, “Go see your doctor, kid. We like you. We want you to live.” It was the encouragement I needed to make the appointment and keep it. Thank you.
Well, I went to see Dr. Yun yesterday. But I wasn’t alone.
Regular readers of the ol’ PG know my friend Heather. I have mentioned her many times, perhaps most notably in a series of posts last summer when she had her first child, Julia, and I was present for the birth. (There were also frequent Heather sightings while I lived in NYC and D.C., as I stayed with her and her delightful husband when I was in town for business or holidays; there was also this post about the Dairy Queen blizzard.) Those who loved classic Quilty know Heather that way, too; she was assistant producer on the show four out of the five years we made it and appeared as a guest on the show many times, too.
There are many qualities that I admire in Heather. She is generous, as evidenced by the number of times she has given me keys to her home. She is dependable, the proof there being the years we worked together with nary a hiccup. Heather is funny. She’s a great designer. She’s clearly a wonderful mother (more on that lil’ rascal Julia in a minute) but there’s something I admire most in Heather and I’m blinking back a tear or two as I type this: Heather is steadfast.
Forgive me for making it about me for just a moment, but to properly describe Heather’s steadfastness, I need to first describe what it’s like to be my friend. It’s not very…even. I’m out of town a lot, for one thing. When I finally get home from being among a ton of people, I’m in desperate need of recharging. As an introvert, this means that I need to be alone for awhile, otherwise I’m no good to anyone, including myself. Sometimes, I fall in love with a boy and move to New York City, but then we break up and I move to Washington, D.C. and when I get home, I start graduate school. Crafting chains of events of these kinds is a specialty of mine, but I end up with few opportunities to go to matinees or maintain a weekly sew day, for example. And then there’s the writer thing. Writers are weird. Most of us have some measure of social anxiety — yes, anxiety with people we know and love very much. I’m raising my hand, here.
But Heather is true. She loves me because I’m Mar, I think. She sees my wild life and it’s okay with her. Even if we don’t see each other for awhile, when we get together, it’s great. We’re peas n’ carrots. I’ve told Heather things I haven’t told other people. I’ve relied on her. The fact that I know I can absolutely rely on her says much about how she loves me, the very nature of Heather. Her steadfastness makes the world a better place. Now, she knows I love her fiercely — I’m not completely hopeless at friendship, I just show it in different ways, cough, cough — but she does such a better job at staying connected and I am grateful.
Yesterday, I dragged myself out of bed, dragged myself to the train, dragged myself up to the 16th floor of the Lavin Pavillion at Northwestern Memorial. But though I was anxious and gloomy, I made it. I made it because Heather texted me that she and Julia would be there soon. Sure enough, moments after the nurse left me alone in the exam room and just before I started biting my cuticles, I heard a soft “knock, knock” on the door. I jumped off the exam table as my beautiful friend pushed open the door with Princess Julia in her stroller. They had come to be with me in a place that feels to me like a dark forest.
Forests are no match for true friendship and the sweetness of an eight-month-old baby. That child is incomparably adorable. Julia has discovered her tongue (wonder of wonders!) and sticks it out with glee as often as possible. Heather looks great. Between chatting with her and watching Julia rocket around the room on all fours, I had no time to be afraid. When Dr. Yun came in, I answered her questions without crying even once. And suddenly, the appointment was over. Honestly, it could’ve gone on longer and I wouldn’t have minded at all.
Heather and Julia came with me for my blood draw, too. Dr. Yun wants several tests done; I’ll go under for those. Really, that’s the scary stuff. The tests and the news afterward. Heather and I have already talked about another rendezvous.
I made an appointment with my GI doctor for Monday. As in, Monday, April 17th. But I called the hospital that morning and rescheduled it for Thursday, but on Wednesday, I called and cancelled it. Did I want to reschedule it, the lady asked?
“No, no. I’ll call back in a few days,” I said, and hung up and rubbed my forehead a while.
I will call back. This week. I really, really will do that and I’ll go because it’s important. It’s like, the most important thing. But I just couldn’t do it this week.
I was too scared.
I’m scared to go see my GI doctor because I’m afraid to get bad news. I’m afraid to endure the tests that she’ll want to schedule because that means scopes and needles and stuff. I’m not ashamed to tell you that I have a prescription for an anti-anxiety medication that I can fill when I have to go do this kind of thing. That’s how freaked out I get, that’s how bad it feels, that’s how potent the fear is on account of the past.
One has to psych oneself up for these things, I told myself on Monday morning, and I was not properly psyched up. As Thursday approached, I was slightly more psyched but recalled that in the past, I have done far better at GI appointments when I have a friend go along with me. But I don’t like to bother anyone, for one thing, and for another thing — second confession — every time I think about asking a friend (or one of my sisters) to go with me to a GI appointment, I start crying because… I don’t know. I just have all these memories of being sick and all the loving things people did for me during the worst of it. And I just start hiccuping with these deep, breaking sobs and I don’t even know what that’s about. But I feel sad and I don’t want to ask anyone to do that.
Confessing to you that I cancelled my appointment twice and promising that I won’t cancel again is my attempt to be accountable. I’m going to schedule the check-up. I’m going to phone a friend. I’m going to take care of my health and I’m not going to be afraid. Or maybe I’ll be afraid, but I’ll do it anyway.
I get worried when I feel physically bad for more than a day or two (I’m on Day 3) and then I have a crying symptom on top of that.
A few years ago, my surgeon looked at me sternly and told me sadness was a serious symptom to which I needed to pay attention. She didn’t mean that I was depressed and that depression was serious (though I was, at the time, mildly, and of course depression is serious); she meant that in her experience, when Mary Fons gets sick, Mary Fons doesn’t always run a fever but she oftentimes gets very sad and bursts into tears multiple times a day.
Today, I burst into tears four times. Okay, five, because I just did it again.
Do the crying jags mean I’m sick not with a cold but with something else? My guts have felt strange lately but it’s so hard to tell. I’ve changed my diet recently; is that why I feel bad? And certainly there are perfectly good, totally reasonable and seemingly unrelated reasons to cry, cry, cry:
— My aunt is very sick and the fate of my cousins is uncertain
— I feel a terrible nostalgia for my sisters and my mom and Iowa
— People in every part of the country learn how to quilt on public television and I have taught people how to quilt on public television and I learned how to read with help from public television and my president wants to kill public television and this makes me so sad I cannot bear it, I cannot
— I must admit that I feel overwhelmed by work and school
May I ask a favor?
Is it okay to come to you and just burst into tears? I strive on the ol’ PG to offer content of substance. I strive to be precise and topical and entertaining and thought-provoking and I desperately want to make you smile. But I almost didn’t write to tonight because I feel so terribly sad and then I thought, “Well, maybe that’s why you ought to write.”
For the past hour, I have been working on a lovely post about the beauty of friendship. But I have to stop. Because I am sick. I am sick with a terrible cold. My nose hurts. My body aches. My lips are dry and cracked. I am hot. Then I am cold. Then I am sad. Then I feel sorry for myself and I say, “Stop feeling sorry for yourself, Mary,” and then I say, “It’s too late!” and then I say, “Stop talking because it hurts the head.”
So I have to stop, now. I think it’s going to have to be good enough that I found a painting by Winslow Homer called, “The Sick Chicken.”
Do you remember the last time we talked about Winslow Homer? I had so much to say about this painting. Those were good times, weren’t they? I could breathe back then. I could run and jump and play. But no longer. Now, I shall perish on this couch, wads of snotty kleenex strewn all around, the remnants of my veggie burger drying out on the coffee table. Woe, woe!
I talk to my incredible mom frequently, but she does learn certain things about me via this blog. After all, I blog about five times a week; Mom and I talk once a week, on average, with texts and emails in there as needed. I got to spend quality time with her last weekend in Manhattan — and took a pretty terrific selfie with her and legendary quilters Paula Nadelstern and Mark Lipinski which can be found on my Instagram page right here — and we had dinner and saw Rebecca Fons in a show at Second City in Chicago on Monday, but I never got around to telling her that I have some bad news. Sorry, Mom. Knee-brace yourself.
My knees are in trouble. It’s both of them, and it’s serious.
Admitting this is a big step. Admitting you have a problem is the first step in dealing with the problem and I have not dealt with The Knee Thing for… I have put my head in the sand about my knees for probably two years. But I am making myself accountable tonight. I have to see a doctor. It is getting worse and worse.
Look, when you have Ulcerative Colitis and then you have organs taken out because of Ulcerative Colitis and then you weather infections and things, those events don’t happen in a vacuum. My GI doctor does bone density scans (they’re not fabulous) and we do blood work (hello, iron infusions that cost $750 each) because while no one is “normal,” some people are less normal than others. At least some people have less bone density and iron than others and have absorption issues because of high-maintenance or non-existant intestinal walls.
The constant throb of knee pain that I have may or may not be related to my illness. It could be that I have, along with my other fun body portfolio, plain old “bad knees.” But I’m not overweight, I’m not an athlete, and we don’t have “bad knees” in my family, so I’m inclined to think it’s got something to do with UC, not from an absorption issue but…
This is where the blogger who blogs about her personal life has a decision to make. Do I tell you why I think I have knee pain really? Or what is most certainly compounding it? How much information is too much? If it’s scary to tell you the truth, does that mean I should tell you or does it mean I shouldn’t? In this case, after staring at the computer screen for long minutes, I have decided to tell you the ugly truth out of empathy for other humans who might have the same issue or need to know they are not the only ones.
My knees are shot because of getting up and down off the toilet so much for nine years.
There you go. Sexy, right? So cool. So glamorous. How cute am I now? How together do I have it now? Are you impressed? Did my Facebook likes go up? It’s the truth, comrades, and there does come a point when the truth is the best thing because you’re just too tired for anything else. At my sickest, I went to the toilet 30 times a day. It hasn’t been that bad for a long time. But when I had an ostomy (three years total), I went a ton, just because I hated having anything in my bag. When I got sicker, I went a lot. And now, better but never normal, I go probably 10-12 times a day. When you don’t have a colon, that’s actually a pretty good number.
That’s a lot of up and down, you know? That’s a lot of knees.
When I realized this, when I heard horrible crunching, gritty sound of my knees without even putting my head near them — this started well over a year ago — I was getting up from using the commode. Have you ever laughed bitterly? I mean really bitterly? I have. I did that day. I thought, “My God. My knees are a casualty of this.”
But who wants to have bad knees in her thirties? Who wants to admit why? No one, and not me. I’d rather make quilts. I’d rather work on the book I’m writing. I’d rather make dinner for Mariano (he’s coming over in a little while!) and I’d rather be with you, talking about anything, anything other than this.
My life is so incredible. I love school. I love writing for Quilts, Inc. I love my friends and my family. I adore where I live. I’m embarrassed when I look around at all that I have, really. Knee surgery ain’t that bad. I just don’t know when I’ll do it. Maybe this summer.
Because it’s bad, Mom. They hurt all the time and they click and pop. And I’m really sad.
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.