So many times, so much illness, so much pain…
When my Viennese snickerdoodle Dagmar and I got married way back before digital cameras, life was a whirlwind, mostly undocumented. Of course we spent a lot of time and energy at our respective jobs, but also with our new household, riding the motorcycle, going to parks, traveling the area as much as time and money would allow, me playing in the band, she helping with equipment. We kept busy! In our early 30’s, life was pretty full, and we were happy — even if Fruitloop-kitty had a tendency to pee on her foot every now and then.
One day, “I’m tired,” she said. “I don’t tink I can go mit you to vatch you play in the band tonight. Maybe you can go by yourself?”
That’s okay, no problem. But a week later, “I still don’t feel vell,” she said.
Life for me became a series of medical vignettes. I remember little snapshots of life. Milestones of a sort. No, not milestones — mileposts. That’s a better word. Not a goal, but rather a spot to pause and remember.
I remember one day playing with the band at an outdoor concert. We were playing the “Beer Stage” at Rivercade, an annual festival in Sioux City. George Thorogood and the Destroyers had just finished playing on the main stage, and people were headed to the beer tent. Our job was to keep ’em there long enough for management to sell enough beer to afford to pay us, basically. The good part is that it was a built-in crowd — we didn’t have to work to get the customers IN the door as they were all ready for a beer, we just had to keep their attention long enough that they’d hopefully buy another… We had a couple hundred people in the beer tent, dancing and having a good time, when out of the corner of my eye I saw our singer drop the microphone and jump off stage. My eye followed the motion, and in an instant I realized Dagmar had passed out — she was on the ground, slumped in a heap, just to the side of the dance area. She was in danger of getting tromped on by about fifteen half-drunk concert-goers who were oblivious to the unconscious lady in the shadow… By the time I got there, seconds after the singer got to her, she was sitting up, blinking. “I didn’t feel so good,” she said.
I remember a neurologist looking at the results of an MRI, asking Dagmar, “Do you often have migraines?” Dagmar shook her head and replied, “No, I just get a little headache every vunce in a while, but I don’t have major pain.” The neurologist gaped at her. “No,” he said, “you have migraines. You have migraines so bad they’ve scarred part of your brain…” Dagmar looked at me, “Vell, these headaches, they don’t hurt as bad as my tummy,” she said.
Vignettes. Little snapshots.
I remember the story she told coming out of anesthesia, half in English and half in German, about a princess taking a red rose to a castle. I remember a few days after she told me the story about the princess she collapsed while being discharged from the hospital.
I remember spending our first anniversary in the hospital as she recovered from cellulitis in her face, most likely caused from an infection from the surgery. I sat up for 22 hours straight, watching her. I remember waking up in the middle of the night on a chair in the hospital, wondering what all the noise was. “I can’t believe you slept through that,” the nurse told me. “Your wife nearly died. It’s a good thing she pushed the ‘call’ button or her blood pressure would have kept dropping… It took us five minutes to pull her back. And you slept through it all…”
I remember how happy she was when she found out she was carrying, and how utterly crushed she was when the miscarriage happened. Horrible, wracking sobs… This happened four more times in the coming years. Sobs each time.
Vignettes. Little snapshots of life.
“You go ahead,” she told me. “I’m not feeling very well again.”
I remember when they removed her first ovary (you can read that story HERE). By that time she’d had so many surgeries that the scar tissue in her abdomen was pulling her internal organs out of place. They were supposed to take a cyst from her right ovary, but when they got in there, her right ovary was fine. “We started looking around,” the surgeon told me later, “and it turned out that the cyst was on her left ovary the whole time. But we thought it was on her right ovary because both ovaries were on the same side — the left was behind the right one.”
I remember when they had to go in to remove a blood clot.
I remember when she started bleeding from her navel one day. Oddly, it didn’t surprise me.
I remember being terrified that they’d have to remove her remaining ovary. “I can’t have kids,” Dagmar said, “but vhat scares me is dat the doctor told me if I had one more operation they’d have to remove my bowel. I don’t vant a colostomy bag…” When they did do the hysterectomy they had a special surgeon there whose main job was to pull out her intestines and cut off the adhesions and scar tissue. I remember being very relieved when they said they got her all put back together with no colostomy bag problems…
It all blurs together after a while. Which hospital were we in for what operation? Which illness happened when? Does it really matter? Just keep putting one foot in front of the other and carry on… Dagmar smiled and took food to other people in the hospital on her way home from work, refusing to show her own illness. I worked as hard as I could, constantly afraid of not being able to make the bills.
“I’ve never seen such a bad sinus infection,” the doctor said. “There must be some reason she keeps getting these.”
A few months later, “this is the third time she’s had pneumonia,” the doctor said. “There must be some reason for this.”
Through it all, Dagmar would do her level best not to show any pain. “Vhy should I moan about it?” she asked. “Udder people die. Me? I’m just sick all the time.” We’d go out and see friends and she’d be as bubbly and happy as she was in 2000 when we met, flitting around the room, beaming her smile at whomever was lucky enough to be there. Then when we’d get in the car, “I don’t feel so good.” The smile would still be there, but it would be strained, her green eyes a little unfocused. The next day she’d stay in bed.
I remember coming home from work and finding her on the floor, writhing in pain. “It’s just a kidney stone,” she said through clenched teeth. “I get these every once in a while.” A pause while she gasped for breath. “A couple more hours and it’ll be over.”
We took her to the emergency room for kidney stones once. She spent seven hours curled up in the fetal position on a cot while we waited for a doctor. Not only would the nurses not give her any aspirin, but they wouldn’t let Dagmar take the aspirin she brought herself. She finally went to the restroom and passed the stone on her own. A week later the hospital sent us a bill.
So we didn’t go to the hospital for kidney stones any more.
I remember. I remember hearing her crying quietly into her pillow at night, trying not to wake me. “Vhat can you do?” she asked. “Why should I wake you. It’s just pain. I vish it would go away, but there’s nothing you can do. Now you go back to bed. It’s just those cramps again.” She held her side and rolled over, a small trail of blood coming from her belly-button.
I remember the doctor saying, after looking at Dagmar for five minutes, “Really, she’s in good shape. We don’t know why she’s having all these problems.”
One doctor said it was her gall bladder after looking at Dagmar for five minutes, so that came out. (That was in 2002, the surgery that caused the cellulitis in her face — we think that operation is the one that led to the current problem.)
One doctor diagnosed her as having polycystic ovarian syndrome after looking at her for five minutes and said that was causing all the problems. Once she had no ovaries, well…
Celiac’s Disease. Crohn’s. Massive sinus infection. Let’s do more tests… Are you SURE these are your symptoms? What’s with the rash?
The last year has been difficult. Dagmar was ill more and more often, and more severe cramping. “I have pains in my arms und legs now,” she told me a few months ago. “I feel like someone punched me in the gut.” Oddly, the dark circles under her eyes accented the green, making her Gypsy visage the more mysterious. “It feels like I have weights on my arms und legs.” All I could do was bring her tea, tuck the blanket around her, and make sure the ever-present barf bucket was close at hand.
“Does she have Celiac’s Disease?” I asked the doctor during the five minutes we were allowed to see him. He shook his head. “No, that’s not it,” he said. A week later we were back in his office again for another five-minute visit. “I think she might have Celiac’s Disease,” the doctor told us. We went shopping and spent most of our remaining moolah on gluten-free food, a requirement for Celiac sufferers. A week later, “It’s not Celiac’s Disease,” the doctor told me on the phone.
A few days later, “I don’t think I can go to verk today,” she said. “I’m really feeling pretty bad.” We went to the doctor for more tests later that day. I cornered the head nurse. “Look,” I said, “something’s gotta happen. We can’t live like this. She’s been sick for EIGHT YEARS, dammit! You’ve been treating her for two years. If you guys can’t find the problem in two years, send us to someone who can!” That’s when we got the referral to go to the Mayo Clinic. To be honest, I think the doctor had already come to that conclusion anyway, but it made me feel better to harangue the nurse…
So we took Fruitloop the Diabetic Cat to my more-or-less-brother-in-law and sister’s house and taught them how to give a cat a shot, packed up the dog, and headed to Minnesota.
Rochester, Minnesota, home of the Mayo Clinic, looked startlingly like… Well, like a town. We pulled into the Super 8. Dagmar checked in while I started loading our stuff on the rickety little cart they provided, Zoey-dog looking on in dogged amusement. I was just adjusting the last bag on the cart when Dagmar came back out with two little key-cards. “Ve haf a room on the third floor, but we have to be out by noon Thursday.”
“That’s not gonna work,” I said. “On the phone they said we could reserve the room for two days, then extend the reservation as much as we need.”
“I know, but they say there’s an antique convention in town this veekend and all the hotel rooms in town are all full.”
I started to get angry. We went up to our room. I got more angry. “This doesn’t look anything like the picture they showed on the Internet,” I hollered. “This is NOT going to work!” I’d brought pretty much my entire office with me, under the impression that the hotel room would have a desk upon which to put my computer and two monitors. “Where’s the desk?” I demanded. I looked out the window. A fine view of a parking lot under construction backed by a factory of some sort. The only thing that made the jackhammering bearable was that it was being drowned out by the factory noise. “I need a desk, dammit. Their website clearly indicated a desk!”
Dagmar pointed to the little end table next to the bed. “Vell, if you push that little bitty table over by the tiny refrigerator and put the two of them together…” her voice trailed off as she looked at my face. “Maybe I should go downstairs und see if they have a different room.”
By the time she got back, I’d calmed down. But she was successful, and we moved across the hall to a different room — one with a slightly larger table. “It’ll work,” I said sheepishly. Dagmar had ridden the entire way from Sioux City to Rochester unable to lay her car seat back because I’d insisted on taking my computer and hadn’t complained. Here I am, stomping and fuming about minor annoyances when she’s in pain… A look at her face confirmed that she was, indeed, hurting. “Why don’t you lay down, Schnook?” But she wouldn’t — not until the clothes were unpacked and put away, the dog walked, and the mini-fridge stocked.
Up at 5:30 the next morning, showered, and off to the clinic… We left the room early as we weren’t real sure where we were going — only to find that the hotel had an hourly shuttle bus to and from the Mayo. Convenient! We boarded the 6:35 bus and were dropped off at the Clinic about ten minutes later.
The Mayo is not one building. We were supposed to check in at the Gonda Building, then use the “subway,” a series of tunnels, to walk from Gonda through the Mayo, under the street through the Hilton, through the Guggenheim, past Harwick to the Baldwin Building. The check-in process took, literally, thirty seconds. We walked up to a desk that looked like the front desk at a classy hotel, or maybe a fancy airport, Dagmar showed her ID, the lady handed her a packet and said, “Here’s your schedule of tests. You meet with the doctor at 8:30, then you’ll go to…”
The whole time the lady was talking, I was gawking. I’ve never seen so much marble. We went down the steps to the subway and found ourselves in a three-story lobby complete with a grand piano… That’s the way the whole clinic was — at one time I found myself complaining about how the artwork hanging in the hallway looked like a cheap Warhol ripoff, only to peek at the sign and learn that it WAS a Warhol…
We made our way through the maze with a minimum of woes and found ourselves on the fifth floor of the Baldwin Building. We sat in the waiting room until the pager they gave us started buzzing, at which time we were ushered into an examination room.
You know how the little exam rooms are… One, maybe two chairs, a table for the patient to be undignified upon, a sink and a small desk with a box of Kleenex where the doctor writes his prescriptions… This room was not like that at all. There was a couch (or loveseat), a couple nice chairs, a computer…
The doctor came in, dressed in suit and tie, and shook our hands. He went through Dagmar’s history, bit by bit, gave her an examination, and after TWO HOURS started to methodically order tests and appointments. Two hours with a doctor! I’ve always considered myself lucky if I could get ten minutes’ time. It turns out that the standard is for doctors to get paid according to how many patients they see in a day, which means that they try to rush through as many people as possible. At the Mayo Clinic, however, they pay the doctors a salary — thus encouraging them to actually spend time with the patients.
A novel approach indeed!
The next days were a bit of a blur. Back and forth from hotel to Clinic, seeing various doctors, getting assorted tests… On Friday Dagmar had a series of biopsies. A gastrointernetologist had narrowed most of Dagmar’s symptoms down to problems in four categories. The biopsy would give us the final answer.
We were in the 9th floor of the Gonda Building, I think. Dagmar’s little pager buzzed, I gave her a quick kiss and watched her follow the nurse back into the “procedure rooms” for the biopsy, holding her belly where the cramps were. Three or four hours later, my Alpine Snowflake was back, getting out of a wheelchair, smiling at me. “Ve can go home now,” she said. “Back to the hotel, ve take a nap, und in the morning we go home. They’ll call us Monday with the results.”
The trip home went quickly. We’ve lived here for nearly ten years, and have never been gone for five days before, except for one vacation we were gone six days. It felt strange, coming home. We unpacked, Dagmar put on her comfy jammies and went to bed. “I hate to say it,” she said, “but it still really hurts where they took the biopsy.” They’d put her under, then went down her throat, snipping bits of her esophagus, stomach, and small intestine for testing. Those tests would tell us if it was Celiac’s Disease or some other problem.
Today the results came in.
Dagmar has had West Nile disease for the last few months, but that’s not the main issue. The muscle aches are caused by a Vitamin D deficiency, which can be remedied with a simple dietary supplement. But the BIG thing is the abdominal distress she’s been suffering for eight years… The biopsy showed that she has a bacterial infection with severe and prolonged bacterial overgrowth. There’s a fancy word for it that escapes me at the moment, but basically she’s had an infection in her small intestine for the last decade. It’s been getting progressively worse and worse, making her sicker and sicker until the past few months when she started having problems digesting food — thus leading to fatigue and various vitamin deficiencies. A month, maybe six weeks on a couple antibiotics and an illness that’s been plaguing her for a decade will be over, and I’ll have my happy wife back! (They say this is a very aggressive bacteria, but I’m optimistic that the antibiotics will work.)
I can’t imagine having an infection for more than a few months, but the doctor said that with the amount of infection she’s got, it’s been going on for years, possibly decades, wearing her out, making her sick, making her more prone to catch other illnesses (the pneumonia, for example).
But this is it. It’s over. I truly believe this is the end. The illness is done. My wife is back!
Edit, 8 May 2016 – Nearly eight years later I’m re-reading this post. It’s hard to believe how optimistic we were back then… Since this post was written so much more has happened; Dagmar is now disabled, needs oxygen, can only walk a few yards even with her walker, has seizures, and is still very ill nearly one-hundred percent of the time. It’s hard to imagine now that there was a time she was healthy enough to travel so far as the Mayo, then be able to actually walk through the halls. The bacterial overgrowth has been taken care of, but the disease that caused it remains – Common Variable ImmunoDeficiency – and is causing so many more problems…