Tag: Ulcerative Colitis

Tumbled

I’m starting to get used to the vertigo now. It’s been going on for all day for the last month, and it’s hard to remember a time when the world hasn’t seemed like I’m watching it from inside a dryer.

Chronic illness is nothing new around our house, and Thing1 set a really high bar for accepting fate with graceful determination when he got his ulcerative colitis diagnosis a few years ago. I watched his experience, and, I know that, no matter how you handle it, a chronic illness means chronic, not curable.

Last Tuesday I had an injection of steroid into my inner ear that hopefully well control the symptoms for a few months at a time, putting the disease into remission. Forty-eight hours later, there were breaks in the tumbling until I torpedoed my success with too much salt which led to a hangover on Thursday. When the hangover began to recede, my first sensation was exhaustion. After a 20 minute nap, however, I felt like a towel that had been pulled out of the dryer and hung on the line, fluttering with my second or third wind.

Care in the Age of Corona

A few weeks before exams, Thing1’s school sends around a mailer that lets parents fill out a greeting card and select an assortment of “healthy” candies and snack foods to get through the rigors of studying and testing. Most of the letters from Thing1’s college are pleas for money for one reason or another, but this one always gives me the giggles.

The first mailer instantly had me mentally grumbling, “When I was your age we used to walk 50 miles in the snow without any care packages to take our exams”.  College these days seems a bit like summer camp but with amenities like all night cookie delivery and bubble tea joints on every corner (and, in the case of Massachusetts, actual joint joints on more than a few corners).

Care packages seem more than a little redundant.

But this week there’s something I didn’t have when I was his age. In addition to the suppressed immunity I never had at any age, Thing1, who has faced his mortality more than once in the last two years, is hearing all the same news we are about the new Corona virus going around.

The new virus which has people suddenly washing their hands (who were these people who weren’t buying hand soap before last week?) and giving Vulcan “Live long and prosper” greetings instead of handshakes is the next thing we’re worrying about for him.

Thing1 takes things in stride, but his school has decided to keep dorms open over spring break to encourage people not to travel. His hospital has reported cases and is discouraging scheduling of new surgeries, including the next one he needs, in anticipation of an increased case load. I know that, despite his ability to take life’s little challenges one day at a time, this virus and all its potential implications are at least in the back of his mind.

Most of the time, COVID-19 news interests but doesn’t overly worry me. I’m mostly healthy. Thing2 is abundantly healthy, and the Big Guy is a rock.

The implications for Thing1, however, are on the top of my mind when I think too long about this new virus. So, even though I’m going to remind him that, back in the dark ages, we had to study for exams by candlelight and write our essays on bark using charcoal when we were his age, I’m sending him a a little care in the form of some hermetically sealed candy and snack food.

And there will be at least one giggle when I hit send.

Walk With Me

It’s my second week of being bed or chair-bound as my foot recovers from a total overhaul. It’s been really inconvenient, but, ironically, it’s give me a chance to take a different kind of walk with one of the best people I know.

This time last year I was still writing mostly about Thing1’s journey with Ulcerative Colitis. We thought, at the time, that journey was almost over and that he was starting a newer, more adventurous one. Then his body recently reminded us that a diagnosis of a chronic illness is a permanent one.

His chronic illness is classified as a disability. It took me a little while to really understand why it’s classified that way, but as I watched his disease derail a year of his education and govern so many other major and minor life decisions, I gained a better understanding of how invisible illnesses can cause impairment. It wasn’t until the last two weeks, however, that I understood how that feels.

As someone diagnosed with bipolar disorder, I can sympathize and empathize with some of the impacts of invisible illness. Depression can impact your ability to function at work and your ability to parent effectively. It does not, however, turn the simplest activities, such as showering, into activities that need extra equipment or preparation. It doesn’t keep you from reaching the microwave. It does not have you planning your schedule when you might want to go to the bathroom next, let alone how to return to work.

Thing1 is less than half my age and wrestled with all of these issues and more in the last few years. These questions have determined where he would live and if he would go to school on any given day. They are determining if he may miss yet another year of school and when he will begin his adult life.

Spending a few weeks navigating the activities of daily living that are usually take for granted has been a pain in the neck, but it’s also given me a chance to walk with T1 in a whole new way.

Living in Lessons

Tree of the Knowledge of Good

I don’t tend to be a mourner. I shed a few tears, maybe a sob here and there, and then the person I love lives on in my memories and, if I’m lucky, in the lessons I’ve absorbed from them.

I’m blessed to have been born with a small army of Great Aunts. I don’t mean that  they were a generation removed from mine. I mean that they were and truly are great – awesome. They adventure. They dive into learning. They are helpers and nurturers. They have always been what I want to be when I (eventually) grow up. Kind. Brave. Extraordinary.

One of my League of Extraordinary Women passed away on Sunday night. She was a prominent fixture in our lives when Thing1 was born, helping us navigate the German healthcare system (where he was born). A counselor and mother, she helped me learn to trust myself and my love of Thing1 when I was getting my parenting sea legs.

I am thinking of her even more intensely this evening as I take a break from writing IEPs to absorb Thing1’s news from his latest visit to Dartmouth Hitchcock where he spent a good part of his senior year and what should have been his freshman year of college. We are learning, yet again, that having a chronic illness means that he has, what his doctor once warned was, a permanent diagnosis, inspite of having had a colectomy.  Now, instead of thinking about summer jobs, he is faced with another, riskier surgery or the very real possibility of cancer by the time he’s in his thirties.

He always seems to take the news in stride, but I know he’s frustrated and a little frightened. Hidden in my office where he can’t see me, I give into a few sobs before acting on the lessons my very awesome aunt taught me everyday.

I know if she were here, she would offer a hug and tell me to trust my love for Thing1 as we help him over this next hurdle. She would remind us that we have the strength to get through this together and that it’s okay to cry. And, as she showed us everyday of her life, even when her own child faced a debilitating illness, she would remind us to care for others around us. She would show us how not let fear steal the happiness we do have with each other.

I will sob for a few more minutes before I get back to writing IEPs, and then I’m going to remember her by living her lessons.

 

Keep Walking

On his good days, Thing1 can still Demonstrate that he’s still stronger and faster than we are,and, after a transfusion or infusion, that he still has endurance for some of his favorite activities.

We do try to get him out to hit a few holes or drive a bit. They have minimal impact on his health one where the other, but they keep them connected to his old way of life and, or importantly, what he is determined will be his way of life in the future once again.

We’re always wary of denial on all our parts, but determination is not that. after all, whether it’s getting up a hill at the public golf course in the town nearby, getting over this next hurdle, determination is the only thing that will keep him putting 1 foot in front of the other.

And I’m willing to feed that.

Pie in the Sky

I went out for a treasure hunt after work, sure the entire blueberry crop would have been poached by Japanese beetles. Fortunately, the heat that every Vermonter has sworn they won’t complain about and the humidity we will gripe about seems to have produced a harvest big enough for us and the bugs. I should be happy with enough for a few desserts, but, this year, I want more.

 

This time most summers we’re planning a trip out to Lake Michigan for an almost annual, unofficial family reunion near South Haven, Michigan. We’re not this year.

 

I’ve been going to that spot in Michigan since I was a fetus. My grandparents are buried there. We’ve solved the world’s problems sitting around the table on the porch there, watching the sun set over the lake, noting how much the wind in the trees sounds like wave lapping the shore. We’ve forgotten the answers before bed and celebrated the fact of family there for almost every summer of our existences.

 

But It holds another meaning for me.

 

Eighteen years ago, the Big Guy and I missed Michigan for the first time. In April, my job had moved us to Germany while I was six months pregnant, and Thing1 was due at the end of July. There would have been no travel that summer.

 

Thing1 refused to vacate my womb until the last possible minute. The extended family had convened along the lake. Early in the morning the first week in August, the Big Guy phoned th gang in Michigan. They huddled around their speaker phone, as the Big Guy, Thing1 and I took turns talking, crying and babbling about the newest member of the family.

 

The next year we were all together along the lake.

 

We celebrated Thing1’s first birthday there.

 

We celebrated his second birthday there and, because his birthday falls smack dab in the middle of blueberry season, we celebrated with blueberries and cake.

 

Thing1 has celebrated almost every birthday there with his parents and grandparents and cousins, always with blueberries, and for the last four or five years, blueberry pie.

This summer when Thing1 turns eighteen, we won’t be in Michigan because the Big Guy is getting ready to get a new knee. It’s a good reason to stay home.

 

As I write this, however, we’re getting ready to take Thing1 back to the hospital for the second time this week to address his anemia, to talk about a new medication and possibly stronger measures to get his auto-immune disease under control.

 

He is barely eating. He is getting winded after short walks. He is not looking like his normal almost eighteen-year-old self, and we need for him to get at least a little of his own back before he flies our coop.

 

Last summer, just before we left for Michigan, Thing1 marked his birthday with a hike up the back of Equinox Mountain. He texting us updates of storms and bears on the path until his cell phone died and shortly before he home announcing that he felt truly alive.

 

We don’t know what the next few weeks or even months hold, but, barring a miracle in the next few weeks, there will be no 10 mile hike. There will be no blueberry festival or typical 18th birthday bash.

 

There will be a celebration, however. Even if it’s just our family of four cuddled on the couch, we will make sure he knows that, no matter what the circumstances, his being part of our clan for the last eighteen years, his having made us a clan, is something worth celebrating. And, if I have any say in the matter, it will be with blueberries.

One Fine Day

Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.

He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.

Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.

Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.

Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.

It was a celebration of a new journey.

We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.

This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.

“Yes,” he answered. “One step forward, two steps back.”

“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.

Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.

“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.

I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.

“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.

Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.

The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.

“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.

As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.

Oranges and Oranges


Sixteen year old Thing1 got into fitness in a big way last summer. He started working out like crazy. He spent the summer cutting hay (with a scythe) at his girlfriend’s house and jumping in ponds and rivers.

Just about the same time, he began having digestive issues that caused him to lose over 20 pounds in a few weeks — no mean feat for a kid who can seriously endanger the profit margin of any restaurant daring enough to put out an all-you-can-eat buffet.

Thanks to my job, we have excellent insurance, but it still took multiple visits to the ER and the regular doctor, along with a healthy dose of nepotism to finally find us the right specialist to hand us a diagnosis of Ulcerative Colitis.

At the time, all I could do was feel eternally grateful for our health plan and angry at a system that would have left Thing1 at sixteen without a colon if we hadn’t known somebody who knows somebody who could make something happen. I was angry for a while at the seeming apathy of the people in the system and not just on behalf of Thing1, but on behalf of the millions of Americans who have bad insurance or none at all. It left me wondering how many kids miss their potential because of lack of access to adequate care.

I still think about that every time we go for a checkup, wondering what we can do — aside from regularly calling our elected representatives — to change things.

Thing1 has clearly been thinking about it too, taking the ‘change the things I can’ approach to a life that now suddenly includes up to 12 pills a day.

At first when I saw his reaction, I thought I was worrying about oranges and he was thinking about apples. While I made my daily calls to my reps, he began researching his autoimmune disorder and adjusting his diet long with his workout. He googled and read. He experimented with different portions of protein and fiber, fruit and starches as he learned what his system would tolerate (incidentally coming up with a unified digestive theory that involves eating whole crates of clementines while simultaneously helping your parents run up a grocery bill to rival the national debt).

At the same time, we’ve started the time-honoured college search. T1 is a math fanatic, so we started looking at math/science schools, but he surprised us by announcing he wanted to study nutrition to help other kids who might be dealing with similar digestive issues. We’ve since signed him up for a course at the community college, and he’s even considering a blog with fitness and nutrition tips.

I finally realized T1 and I really were both thinking about oranges and oranges. We were just thinking up different ways to get to the good stuff under the skin.

Save