Scorched Earth: Uterus Edition

Alvaro recently gifted me with my second cold in two months. I’m successful when it comes to avoiding germs out in the rest of the world, but when he brings a plague home, I’m going to fall victim to it. And I did. This one was worse than the last, taking me completely out for four days, and I’m still sniffling and congested a few weeks later.

The cold was the new baby in the family, getting all of the attention, so the middle child that is MS felt left out.

“Wait!” MS said. “I’m here, too! I’m doing terrible things to your body, too! What about meeeeeeeeeeeee?”

Middle children are miserable creatures, aren’t they?* My feet tingling and numb as I sneezed and coughed, I had to concede that MS is going to worm its way into complicating everything else that goes wrong for the rest of my life. Its main mission besides making me miserable is not to be left out of anything, ever.

If MS is the middle child and my cold is the baby, the older child is my reproductive system. I understand that some people may not want to learn more about my uterus, so feel free to sign off now if you are one of them with all of my best regards. I understand.

My menstrual cycle (oops—about to lose those of you men who didn’t realize that this is where the post was heading, so fare thee well) has always been difficult, coming with cramps and pain and rage. In the past ten years, that pain has become excruciating, especially on the first day of my period. People who don’t have debilitating cramping may be picturing a woman on the couch with a heating pad and a cup of tea looking mildly forlorn, but those are the kind of cramps Midol can handle, and there isn’t enough Midol in the world for mine. It feels like a 100-pound anvil is attached to my insides and is trying to pull them out, my lower back the string somehow holding everything together, doing a poor job of it.

This summer, things got exponentially worse. Somewhere between day three and day four, my period stops for about 12 hours, and then the real pain begins as it decides it’s not finished torturing me. My back screams as I writhe, trying to find any position that will lessen the suffering. Alvaro knows the drill, but it still freaks him out. I beg him to push all of his weight into my lower back, the only thing that provides a glimpse of relief, albeit temporary. I yelp when he does it, making him jump back, afraid he has hurt me, not understanding how it’s possible that he hasn’t hurt me. “Again,” I plead, sobbing. “Are you sure?” he asks. And so on and so on until neither of us can take it anymore. Although I’ve never considered it before, if someone had offered me heroin last night when this happened, I would have taken it. No joke—anything to make the pain stop because nothing available over the counter helps in the slightest.

I spoke with my doctor about this issue a couple of years ago and went in for a transvaginal ultrasound to see if imaging showed any irregularities. None were found, but the images were murky, and a few weeks later, I lost my vision, sending me on my journey to an MS diagnosis, my “female problems” placed on the back burner, where they remained until I revisited the topic with my PCP at my checkup in September.

We talked about my options. Hormonal birth control was one, but because of my age, it’s not the best idea. Getting an IUD was another option, but that also involves hormones, and as I approach menopause, I really don’t want to mess with them until I need to. Then we talked about endometrial ablation, a procedure she described as burning the uterine lining so that it scars over, possibly stopping menstruation completely, but certainly making it lighter and easier. It felt like the right way to go, especially when she said the procedure could be done in office.

My next stop was to see a gynecologist trusted by my best friend and my PCP. She was lovely and agreed that an ablation was probably best. Because I haven’t had children, she said an IUD would be difficult to place properly and could cause more issues. Then she said the ablation needed to be done in the hospital under general anesthesia, that it will be more complicated and painful for me because I haven’t had children. Unable to successfully get a biopsy during my exam to make sure there are no indications of endometrial cancer (not having children strikes again—have we sufficiently covered the fact that I HAVE NOT HAD CHILDREN?), she decided to do a dilation and curettage once I’m under before performing the surgery.

Said surgery will be happening Monday morning.

I’ve never had surgery, unless you count a dental implant, and I certainly wasn’t put out for that. I’m anxious about anesthesia but looking forward to having the procedure—and hopefully this unbearable pain—behind me. The cold will be gone soon, too, leaving me with that pesky middle child, the one who will never leave home but can hopefully be coaxed into staying in the basement, less inclined to cry for attention with its competition out of the way, there but not there.

There, yes, but more NOT there.

 

*I’m a middle child, but the rare unicorn kind who is an absolute delight. 😊

Resilience and Workarounds

I’ve been working with my community college’s prison re-entry program this quarter for my sabbatical, writing profiles about some of the people there. It has been such a pleasure to get to know the people I’ve interviewed better, and being trusted with their stories a great gift, one that comes with immense responsibility. Each profile celebrates the resilience of the person it focuses on and the incredible work being done at MCC 180 RAP. When the program is ready to publish the pieces, I’ll link to them here.

One unexpected but happy outcome of this work is an English class I’ll be teaching beginning in December to women incarcerated at the Community Corrections Center-Lincoln (CCC-L). The goal of community corrections is to help incarcerated people transition back into society through work detail, work release and education programs. There are two locations in Nebraska: Omaha (where the vast majority of them are from) and Lincoln. Over the summer, women were moved from the Omaha location to the new Women’s Housing Unit in Lincoln, a transfer that took most of them away from their jobs, family support systems and educational pursuits at the community college. I am so pleased to have the opportunity to bring educational opportunities back to them as part of the re-entry program.

I joined the re-entry program director and another instructor at the facility last week. The Women’s Inmate Council was meeting that day, and we attended the gathering to introduce ourselves and preview the classes we’ll be offering. After, we were given a tour by a corrections officer who also works as a case manager in the unit.

I’ve been inside of several prisons and jails in this state, and much of the media coverage about the new women’s unit has been about how beautiful it is, some stories comparing it to a college dorm or even a resort. It is not a resort, of course, but the facilities were far nicer than anything I’ve seen before. What I was most impressed by, however, were the staff members working there. They were friendly and warm to both visitors and incarcerated people. There is a prison staffing crisis in our state, but everyone I saw working at CCC-L seemed to believe in the mission of helping incarcerated people in their transitions.

As we began our tour, we walked outside to a playground and seating area that is used when families visit, lifting and breaking my heart all at once. A small group of women transferring from the prison in York arrived, loaded with boxes and bags of their belongings. They looked weary after the journey, apprehensive, and I wondered if they understood how much things were about to change for the better. Besides being closer to their release dates, they were about to join a supportive, encouraging community to help with their transitions, their focus turning from incarceration to freedom.

Inside the housing unit, there were women knitting together, working out in the gym, playing cards, doing laundry. It was bright and airy, clean, organized but homey. Two women are assigned to each room, fitted out in dorm-style furniture with two beds (not bunks), two desks and chairs, two lockers. The large bathroom for each wing was better appointed than any college dorm I’ve seen, and the women have privacy that they cannot count on in other prisons or jails. We visited a beautifully equipped kitchen where incarcerated people can prepare for earning their food handling licenses. The men’s dorm was not as nice, a gym-sized open room crammed with bunks, but almost all of the men living there will tell you that it’s better than being in prison.

There was so much to take in, and I was glad to see it, but I was on my feet and walking for almost an hour, my legs becoming numb and unsteady. Sigh. Such reminders of my limitations because of MS come at the worst times. After seeing one men’s dorm, the officer guiding us asked if we wanted to see another one, and the other two women were all in. I finally had to cry uncle and let them know I couldn’t go on much longer, ending the tour for all of us.

I should have said something before we began, letting them know I was good for 30-45 minutes, or I could have spoken up halfway through and bowed out a bit early. I could have brought my cane for support, but I so rarely need it that it didn’t cross my mind.

The next day, the re-entry director apologized to me over e-mail. She had nothing to apologize for, of course—managing my MS symptoms is not something I can contract out to other people. But she’s lovely that way, so I did my best to reassure her that I was fine. And I was fine. I’m fortunate that I’m able to recover after sitting for a while, that I’m still able to do all of the things that require walking in a regular day for now, including going on a walk just for exercise. It’s a good thing I’ve never liked shopping because the time limit on my being upright would take all the pleasure out of it.

My legs are my biggest reminder of MS each day. Because they fail me after standing for too long, I’ve ducked out of a few social gatherings earlier than I otherwise would have. Where I used to stand at the island to do prep work as I cooked, I now have to sit at the table when I can to save my legs. If I want to walk more than a mile, I need to split that walking time up into more than one trip or stop at a bench to recover. After my 30 good minutes, I feel it first in my thighs as they go numb, getting so numb that I cannot feel my hands on them. Next, it spreads to my knees, and I have to focus on the way I’m walking so they don’t buckle. I feel it in my toes, too, as they tingle, but I’m grateful for that tingling because at least I can feel something, unlike the nothingness I feel in my upper legs. I’m fortunate to work in a career field where I don’t have to be on my feet constantly.

In prison, where the rules and limitations of the system create obstacles, creative problem-solving results in workarounds. For example, without something to boil water for hot drinks or ramen noodles, some people will drop a live wire into a cup of water to heat it. Floss can be useful for cutting things or threading eyebrows to shape them. Recently, an incarcerated man told me about a friend who used his prison ID card to slowly, patiently slice up a watermelon from the institution’s garden, one he enjoyed that much more for the effort that went into it.

People with MS have to come up with their own workarounds to live as fully as possible when it comes to daily activities, employment and exercise. Behind the scenes, their brains are doing that as well. When lesions interrupt signals from traveling from one place to the other the normal way, the brain helps those signals go around the lesion, creating a detour-like path. The brain’s ability to do this decreases over time as lesions increase, but it slows symptoms in the early stages of the disease. Our ability to adapt is greater than we know.

Adversity helps us find and build our resilience. One reason I enjoy working with incarcerated and formerly incarcerated people is because they understand this better than most. There’s so much to learn in overcoming circumstances that would hold us back, whether they have to do with addiction, poverty, disability, illness or loss. Incarcerated people would rather not be incarcerated, and people with MS would rather not have MS, but finding ourselves in these situations anyway, we discover strengths we did not know we had and purpose that may have otherwise eluded us.

Shame on Chris Collins

I take more things personally since my diagnosis.

One such thing is the story of Chris Collins, a Republican congressman from New York, who finally resigned today and is expected to plead guilty tomorrow to charges of insider trading. He and his son along with other family members were investors in Innate Immunotherapeutics, an Australian company, where the congressman also held a seat on the board of directors.

Already a millionaire, Collins was a believer in the massive financial gains he expected to receive from a treatment for multiple sclerosis being developed by Innate.  He was so sure of its future success that he encouraged some of his congressional colleagues to invest as well.

When he learned that the drug had failed, Collins is accused of telling his son and other family members to drop their shares before the news hit the market. They did just that, though Collins held onto his own shares, presumably for plausible deniability. When he was indicted, Collins denied all of the charges and while under investigation was even re-elected to his congressional seat, the GOP continuing to back him.

Chris Collins is disgusting. His family members who sought to profit from this terrible disease and then used insider information to dump stock when the drug failed are disgusting. Whatever their punishment, it won’t be enough. There won’t be justice because powerful people get to play by a different set of rules than the rest of us do.

They are fully to blame for their actions, for their greed. But there are so many more Chris Collinses out there, and part of the problem is the potential for massive profits in the MS drug market. In the United States, treatments cost at least tens of thousands of dollars if not hundreds of thousands of dollars each year per person. The same treatments are offered at reasonable rates in other countries. Our healthcare and pharmaceutical industries are cozy bedfellows when it comes to taking from us all that they can in America. Both industries play nicely with Congress to ensure their profit margins.

This reminds me of when AIDS patients were selling their life insurance policies for half or even just a quarter of their value to have cash on hand for medical and living expenses at the end of their lives. These viatical settlements are still a big business today, taking advantage of desperate people with terminal diseases. But in the 1980s and early 1990s, gay men were dying at alarming rates because of AIDS, and they presented a unique opportunity for people who didn’t get hung up on the ethics of profiting from another person’s death. Both big investors and normal people—everyday, normal people—bought out the policies, sure that their investments would double quickly upon the person’s imminent death. But when AIDS treatments began offering patients the hope of living long lives, investors had the nerve to complain about not getting their money back along with profits as expected, to complain about the possibility of actually losing money, now in the position of having to wait decades for the insurance payouts.

Disgusting.

So yes, I take what Chris Collins did personally. And if you believe that profiting excessively off of other people’s misfortune represents the worst of us, you should take it personally, too.

It Finally Gets Me

Admittedly, I’d gotten a bit smug about not having been sick.

Being on a treatment that wipes out your immune system is scary. Since I began Ocrevus just over a year ago, I’ve been nutty about avoiding germs. My purse contains hand sanitizer and antibacterial wipes that I turn to often. I use my sleeves or a scarf to avoid touching door handles. I wash my hands dozens of times each day.

In my classrooms, I let students know that I’m immunocompromised and ask them to steer clear if they’re feeling at all unwell. This conversation is made easier when they see me wiping down the keyboard, desk and remote control before class begins, an unspoken daily reminder. Because I work with adults, they have been lovely about it, sitting in the back rows if they are under the weather. One student even insisted on sitting on the opposite side of the room during an individual conference because she had a bad cold.

This all added up to my miraculously not getting sick for a whole year. No viruses, no colds, no bugs. I worried that I was coming down with something a few times, but nothing materialized into anything of consequence. Maybe I had this whole avoiding germs thing figured out.

And then Alvaro came home last week sneezing and coughing, whining about “not feeling well.” (Aside: why are men are such babies about being sick?) Despite nagging and sometimes screaming at him about washing his hands, covering coughs and sneezes, it caught up to me yesterday, announcing itself with a sore throat and malaise. I’m worse today, coughing and congested, the sore throat going all in. I’m sure the worst of it is yet to come.

Because this is my first time being sick while on Ocrevus, I’m worried about how badly I’m going to get hit, how long it’s going to take to get better. More than that, though, I’m worried about it turning into a chest infection, bronchitis or pneumonia because of my immunosuppression. I fear having to be hospitalized because of something that begins as innocuously as a cold.

Today, I’m grateful that when I felt this coming on yesterday, I made a big pot of chicken and vegetable soup to see me through. I’m drinking lots of tea and water. I’m going to listen to podcasts and watch TV and rest. The best part is snuggling with Maggie, who only allows such shenanigans when she knows I’m not feeling well. Here’s hoping she’ll be back to her fickle self soon because that will mean I’m back to myself, too, feeling revitalized, robust, ever mercurial.

Another Candle

I woke early this morning to dark gray skies, rolling thunder, steady rain. After making a cup of tea, I settled in on the couch with my anxious dogs to watch the weather from my window, reflecting on a heartwarming week of celebration.

I turned 40 yesterday. In the morning, I made pancakes to share with Gus, who loves them more than anything, eating the first batch that never browns properly and a big final pancake made with the leftover batter. After, I went for a walk at my usual lake, enjoying the 65-degree temperature and the breeze. There’s only one way in and out of the area, and the first lot was filled with motorcycles and their riders, people in MCs and police officers, all gathered together, though the police had their own section toward the front. I couldn’t figure out what was going on until I tried to exit the park, only to be prevented from leaving as the police led the bikers out of the lot to the road, where they were followed by a lumbering convoy of historic military vehicles crossing the toll bridge. This morning I learned that the convoy is honoring a trek made 100 years ago by the U.S. Army across the country to emphasize the need for paved roads to improve national security. With no choice but to wait as it passed, I enjoyed the personal parade.

I spent the afternoon at my parents’ house, where my sister and nieces came to visit with a beautiful bouquet of flowers. My mom made my favorite things for dinner and surprised me with little pecan tartlets that I love. They’re a pain to make, I know, so I loved them all the more.

Alvaro and I celebrated earlier in the week on his days off from work. He brought flowers, martini picks I’ve been wanting, chocolates and tiramisu. We went to dinner at my favorite restaurant before going home to “turn back into pumpkins,” as Alvaro says, getting into pajamas for a night of TV. Before that celebration was an even earlier celebration with H, a friend whose birthday is also in August. She gave me a beautiful preserved butterfly wing pendant from a conservation organization to help me better appreciate orange as the color of MS awareness.

My friend C has the same birthday I do, a surprise discovered early in our friendship. I wanted to make her a birthday cake, but it needed to be vegan and gluten-free. I’ve made vegan desserts or gluten-free desserts before, but I’ve never done both at once, so I learned how to make a decent vegan lemon curd and vanilla cake, putting the layers together with whipped coconut cream and raspberries. I brought it to our women’s discussion group on Saturday, nervous about it possibly tasting like sawdust, so we tried a piece before everyone else arrived. To my great relief, it tasted like. . . normal cake. Victory!

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I’ve always loved making birthdays special for others, though I used to resist people celebrating mine. Now, however, I lean into it. When people want to show their love, I let them. I welcome them, appreciate them, and as I pass the 40-year mark, I’m still savoring the sweetness of it all.

Almost 40 o’clock

When Alvaro turned 40 last year, I needled him relentlessly about it. He is incredibly sensitive about aging, which causes him to insist that he looks “much younger” than he is, if only to reassure himself. He is convinced he can forever pass for 26; meanwhile, I watch the silver and gray winding its way through his hair and smile. One night last year, we drove past the building where we first lived together, talking about all of the memories we left behind. “You know what else we left there?” I asked. He shook his head. I grinned smugly and said, “Our youth.” Instead of laughing, Alvaro’s face fell, and he went into a funk that lasted for days after.

Soon it will be my turn to enter the decade we’re taught to dread.

I should have passed the 40-year mark yesterday. I was due on August 11th, a birthday three of my cousins share. It was very kind of me, I think, to hold off so that their celebrations could have their moment before mine began. Well, kind for everyone except my mother, who could not have been pleased about an extra two weeks of pregnancy in the August heat of Texas.

Just like at Christmas, my birthday sends Alvaro into a panic. “What do you want?” he asks, hoping I’ll point him to a very specific thing he can buy to check gifting off of his list of things to do. I refuse because what I really want is to be surprised. Surprises from Alvaro haven’t always worked in my favor (see the binoculars story), but he has gotten better in recent years. Last year, for example, he gave me cooking-related gifts: a filet knife in the brand I prefer, a heatproof spatula decorated with dogs, and cute little rubber dogs that turned out to be pot-lid holders, something I didn’t know I needed but use all the time now. Flowers, chocolate and tiramisu topped off a thoughtful altar of offerings. The goddesses were pleased.

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We joke about daily expenses being each other’s birthday presents. Near Alvaro’s birthday this year, there was a car window to replace. “Happy Birthday!” I declared as he rolled his eyes. We need a new furnace before the fall, which Alvaro has decided would be the perfect gift for me. If it were, then a new car for him will be my birthday present next year. No, thank you.

So usually for our birthdays, we splurge individually on something we’d like to have, something we’d normally think of as unnecessary or too expensive. For Alvaro, it was a remote-controlled car, which he insists vehemently is absolutely, positively not a toy. “A toy?” he scoffs when I make fun of him. “Um, I didn’t see too many children at the hobby store. It’s a hobby.” More like a weird mid-life crisis, but it could certainly be worse. This year, I don’t have my eye on anything special for myself, no necklaces or baubles calling my name. Turns out, as I approach 40, I want for nothing. Isn’t that better than any gift?

Of course it is, but don’t tell Alvaro. He’s still very much on the hook.

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Infusion Day

Six months have passed since my last dose of Ocrevus, these infusions a strange new way of marking time, leaving me to wonder at how quickly it passes. I arrived at the infusion center at 9 and am currently hooked up, binge watching Masterpiece Theater’s production of Les Miserables.

I’m here on my own today. It was time for it. My mom helped me get through the first three infusions, navigating the unknowns with me and keeping me entertained. Now that I know what to expect, I’m able to do it myself. When the pharmacist came by to introduce himself as my “bartender for the day,” as he always does, I missed her replying, “I’ll take a Bloody Mary, please.” This time, I just smiled and went back to my show.

I’m buzzy from the steroids, a little lightheaded from the Benadryl, but all is well. Time for lunch. ❤️