Hi. It’s been a while.

A few people have noticed that I haven’t written anything in a while–not since winter, actually. (Yesterday was the first day of spring, and today I am writing this from home on the first snow day of the year. These have been a weird couple of years, nyet?)

Well, here’s the long and short of it. Healthwise, I’m doing better than I have been in probably eight years. I discontinued taking antibiotics last summer, and I slowly tapered off most of the supplements I had been taking, so far without any terrible effects. I still have good days and bad days, with occasional nerve pain in my legs and feet, mild joint pain, and some lingering vision and hearing issues…but all in all, the severe symptoms of my Lyme/bartonella/babesia constellation are better than I ever hoped they could be.

I take H1 and H2 (histamine) blockers twice a day, and that has controlled my mast cell disorder symptoms.

So, physically, I am better than I thought I could ever be.

Emotionally–well, that’s a whole other story.

Mother Knows Best

My mother played a primary role in my Lyme disease diagnosis. As I was going from doctor to doctor (to doctor to doctor to doctor…) being given test I never knew existed, from MRIs to EEGs to ECGs to EMGs and NVCs, visual and auditory evoked potentials and more, my mother urged me for years to be tested for Lyme. “You had it when you were a kid,” she kept writing to me. “It can come back! Just read this,” and she’d send links from Jenna’s Lyme blog, links from ILADS, links of people crying for help in YouTube videos. I didn’t pay any attention. The first neurologist I went to told me “Lyme can’t come back.” I had worked for over a decade with the National Institutes of Health, the CDC, the Robert Wood Johnson Foundation; I knew how to research health issues. I went to NIH’s website: No, there’s no such thing as chronic Lyme disease. I went to CDC’s website: Despite misinformation online, it said, there’s no evidence for chronic Lyme disease. It just doesn’t happen.

I thanked my mom for her persistence, and I told her I realized she was only trying to help. But I don’t have Lyme disease, I told her. What I have is serious–something like multiple sclerosis.

Then, as I watched in excruciating pain from my bed, I saw Yolanda Foster’s life fall apart on the Real Housewives of Beverly Hills. Then I started getting messages on Facebook from a friend from grad school who had changed direction to become a nurse: Get tested for Lyme disease, she urged me. Find a specialist. Everything you’re complaining about on Facebook sounds like Lyme.

I listened to my friend, the nurse. Because of her urgent words and because of a reality show, I began to look into the complexities of Lyme disease. If I had listened to my mother, I might have saved myself from years of suffering. No–she might have saved me years. If only I had listened.

My mother always refused to have her photo taken, and absolutely forbade everyone from ever sharing her picture online. When I told her about the Lyme disease challenge, my mother said “I WANT TO DO IT!!!” I explained that the point was to post a photo online to inspire other people to do the same, and to raise awareness about Lyme disease. “I know that,” she said. “I want to do it. I’m so proud of you.” I’ve never been more surprised in my life. This may not be the most flattering photo of her–my mother was a beautiful person inside and out–but it’s one of my favorites because of the joy she took from doing this. What did she know then?

 

The Darkest Winter

My mom has suffered for many years with the same degenerative spinal disease that made her mother’s life hellish for decades. A couple of years ago, she began to have other problems. She lost her appetite. She would eat two Quaker rice cakes with peanut butter on them every day and drink two Ensures–a chemical food substitute that hospitals had always given her mother.

After a while, my mom developed diarrhea that just wouldn’t go away. She finally went to her doctor. He told her to take Immodium AD. She had been doing that. Keep doing it, he said. She spent more time in bed. She lost more weight. She lost all her energy.

Last spring, she finally agreed to go to the emergency room at my dad’s urging, and at the urging of my sister and me. He took her to INOVA Fair Oaks Hospital. She weighed in there at 86 pounds, five feet, four and a half inches. They examined her. They told her to go home and take Immodium AD. “She’s been doing that,” my dad said. “Can’t you admit her and find out what’s wrong?”

“Go home and take Immodium AD,” they said. So she did. She was becoming sicker by the day. My father called her doctor, who told him to bring her to the INOVA Loudoun hospital emergency room immediately. He did; they admitted her. My father called to tell me that my mom was in the hospital, in quarantine. She has a C. diff. superbug infection. It’s serious. You should come right away.

The doctors put her on two antibiotics immediately. She was a little better after only 24 hours–and then she was much worse. They gave her a fecal microbiota transplant and within another 48 hours, she was able to eat a little bit and her diarrhea had improved a bit. After 10 days, the hospital sent her home. We were all looking forward to her putting on a little weight and getting well.

On November 17, my mother turned 66 years old. She could barely sit up with us on her birthday. She stayed in bed on Thanksgiving. In early December, she went back to INOVA Loudoun Hospital. My father called. “You should come right away.” I was sick with a bad cold and didn’t want to risk getting her sicker than she was, and so I called in sick to work, but I spent part of the day on December 11 at the Federal Tick Borne Diseases Working Group since it took place not far from where I live. I wrote a couple of articles related to it for my HuffPost blog. (This blog was intended to be dedicated to entertainment interviews and LGBT-related issues, but it ended up being primarily about Lyme and other tickborne diseases because of the overwhelming response, including almost daily pleas for help from readers.)

On December 12, I went to my parents’ house to take care of their dog, and on December 13, I spent the day with my mother at the hospital. My father was rattled when I arrived; he was angry, telling me that the doctor had chastised him for not bringing my mother to the hospital, and explaining to my father that she was malnourished. We knew this, I told the doctor. The first hospital refused to admit her. The second one–this hospital–treated her for C. diff. and then sent her home. This is serious, the doctor said. No shit. That’s what my mother would have said.

So the hospital was focused on getting food into my mother. She had to drink the Ensure they gave her or else she could not go home.

She weighed 76 pounds. Five feet, four inches tall. Seventy six pounds.

She drank all the Ensure she could, but it wasn’t much. Her lips burned. We could see that the pain was agonizing. That’s a sign of malnutrition, they told us. She has to drink or else we’ll need to put a feeding tube into her stomach to repopulate the gut microbiota.

Within about a day, my mom begun to have blood pressure spikes and corresponding panic attacks. She became delirious, which isn’t uncommon in hospitals, but it was nevertheless alarming. Within another 24 hours, the nurses realized that her blood pressure was spiking because she was losing blood internally. They moved her up to the ICU and gave her a blood transfusion. And then another, another, and another. And then they did an endoscopy and discovered she had a giant bleeding ulcer in her duodenum that required emergency surgery. My father consulted with us. We said yes, fine, if she needs it.

The doctor did the surgery and–good news the next day!–the surgery worked. She was no longer bleeding internally, and with that fixed, they can work on getting her eating again!

Soon, a nurse handed my father a phone; it was the Virginia state health department. They wanted to know where my mother had traveled recently because she had a rare parasitic infection that is usually acquired overseas. My mother has never left the United States. She was quarantined because of this parasite. An infectious diseases doctor told us that the parasite was indeed rare, but it was treatable with broad spectrum antibiotics she was already taking. So we should be out of the woods with the emergencies.

A gastroenterology nurse practitioner explained to us that they now believed she has either Crohn’s disease or ulcertative colitis. The ulcer in her duodenum suggests the former, because with UC, ulcers only form in the colon, not as high up as the duodenum. Either way, she told us, my mother would have to have infusions of an immunosuppresant every three to six weeks…for the rest of her life. But it works really well, so don’t worry. An immunosuppressant? But she is on antibiotics for a parasitic infection…won’t taking both together be a problem? She suggested I ask the infectious diseases doctor; she can only speak about the Remicade. She wanted to consult with my father about it, but he suggested that they do that after my mother is out of the hospital. She reluctantly agreed.

It was a few days before Christmas. We knew that my mom wouldn’t be home for the holiday–but that was fine as long as she got better! We’d make the best of it. She was utterly delirious by then, but I told her that we’d have Christmas there with her and that next year she’d finally be feeling OK for Christmas. Maybe we could even get her back pain under control! At some point she said to me, “I’m worried I’m not getting out of here.” The doctors told us that they couldn’t give any guarantee, but with her bleeding stopped, she should make a full recovery.

For the first time in over a week, my dad slept at home and we went to the hospital that morning in good spirits. When we got there, the nurse told us that my mother’s right leg was blue and cold, probably from a blood clot. That’s all she could tell us; we’d have to talk to the doctors about anything further.

Within a few hours, we were in a little consultation room with an army of doctors–the managing ICU doctor, the gastroenterologist who had performed the ulcer surgery, an infectious diseases doctor, and a vascular surgeon. (I think. Some of this is a blur now.) The ICU doctor looked petrified–absolutely wooden–and when we asked what was going on, she reviewed my mother’s entire case from the moment she was admitted to the hospital. She came in with malnutrition and a history of C. diff. She bled internally and the bleeding was stopped by a surgery. That surgery, unfortunately, caused a very large blood clot in her leg–a rare complication with only a 0.3 percent chance of happening, but it happened to my mom–and she now required immediate surgery to unblock the artery or else she would lose the leg. The doctor kept emphasizing that she would lose the leg. I asked if given how weak she is she would survive losing a leg. “No.”

She had more news. She casually mentioned that my mother had pneumonia–no one had mentioned that before–and that she didn’t have the parasitic infection they told us she had, or at least now the infectious diseases specialist thought that was a false positive. She did, though, have a very rare opportunistic infection that the doctor said she had seen only twice before in HIV patients in Baltimore, 20 years ago. “HIV patients?” I asked. “Or full-blown AIDS?”

“AIDS,” she said.

Your mother does not have AIDS,” she said, “she is just so malnourished that she is vulnerable to something that ordinarily wouldn’t affect her. She is very sick. She has many things going on. Her whole body is involved. She is in shock.”

The room became silent. Shock. Septic shock. We all agreed she had to have the surgery on her leg to remove the blood clot. They told us it was an emergency; it had to happen immediately. We waited five hours for the surgery to begin. We all went home, and I bawled like I have never cried before, and the world pulsed to blackness and back all night. I prayed for a Christmas miracle. I really did.

The next day, the hospital told us everything had gone well, and her leg was warm and pink again–not blue at all. She was under control. The ID doctor told us she did not have that strange parasitic infection, but she did have the opportunistic infection and would need to be on IV antibiotics at home for eight to 12 months–but she that could beat this. The ICU doctor, the nurses, everyone’s faces had changed from hopeless alarm to…well, hope.

And then within a day she had to be intubated because her breathing failed. A week and later, they took her off the breathing tube and she breathed on her own for about four hours, and then her oxygen dropped and a forced-air mask was strapped to her face. I will never forget the alarm in her eyes. After a day, she was reintubated. My father said he had discussed this with her at length for a long time. She didn’t want to be on the breathing tube. He and the doctors agreed to take her off of it. She was breathing for a couple of hours, and then she had begun to wind down. They told us she probably had a few hours to live. A few days later, they moved her to a quiet room in the oncology department and told us she probably had a few hours left. A few days later, they asked us if we wanted to bring her home. We said yes, get her home immediately. Hours later, the doctor said we can’t try to bring her home; she’s too fragile and won’t make it. Bring her home, we said. So they set up a hospital bed in my parents’ dining room and brought her there. She was awake and alarmed when the ambulance arrived. She was lucid, no longer delirious, but she couldn’t take because of damage from the breathing tube. Her eyes were so expressive…I can barely see through the blur of tears as I write this. The hospice nurse explained how to administer morphine orally if my mom became restless and we thought she was in pain; the nurse said she probably only had a few hours left.

Six days later, on January 11, my mother stopped breathing.

Holding onto my best friend.

 

I lost my best friend on January 11, 2018. I lost the person who gave me life and who saved my life in many ways at multiple times. I still can’t make any sense of it.

I spent three weeks at the hospital and I know from watching them that every doctor and every nurse involved with my mother there desperately tried to save her. Yet I struggle with their inability to diagnose her for so long. I struggle with the blame one doctor tried to assign to my father for my mother’s condition. He took her to a hospital that sent her away when she weighed 86 pounds. He took her to another hospital that misdiagnosed her with an infectious disease when she evidently had a chronic autoimmune digestive disease–which, by the way, was never ultimately diagnosed. He did everything he could to get her to eat at home short of physically forcing food down her throat. She didn’t eat because she had no appetite, because she had 20 or more bowel movements a day without eating and even more when she did force herself to eat real food. Not only did multiple doctors not take her health seriously despite her emaciated appearance and self-reporting of serious illness, telling her to take Immodium AD and eat bland food, they overlooked a chronic autoimmune disease and evidently multiple infectious diseases that were ultimately diagnosed in the hospital.

Having gone through diagnostic hell, I naively thought until now that Lyme disease was the one exception to otherwise exceptional healthcare that treats most patients with great care and respect, and which can diagnose and treat most patients. This life-changing experience made me aware that it’s not only people who have Lyme who are both blamed and neglected by otherwise caring and competent healthcare providers.

I still can’t make sense of it.

Adding Insult to Devastation

On January 18, a week after my mother passed away, I awoke to an email from the new editor in chief of HuffPost, with the subject line: Important: The HuffPost contributor platform is closing. My heart sunk. For two and a half years, I had poured so much energy into learning all I could and sharing all I could about tickborne diseases through this blog. I heard constantly from people literally across the globe who had Lyme and who were looking for help. Now I would have to wrap it up, to write up a farewell article and let people who regularly read what I write that they’d need to look to this obscure blog that you’re reading now if they’re interested in what I write.

Except I couldn’t do that. The blog wasn’t going to be closing. It was closed. The HuffPost had made a decision not to forewarn any of its contributors that the blog would be ending; instead it cut off access then and there.

And here’s the rationale:

Those who are willing to shout the loudest often drown out new, more-deserving voices. The same has proven to be true on our own platform.

For my part, I have always taken great effort not to shout even when I was enraged. I had made every effort to be truly balanced when writing about an extraordinarily contentious and controversial health issue that affects millions of people. And while I don’t like to toot my proverbial horn, I know my voice was deserving because of the responses I got from thousands of people over the years I wrote about Lyme disease.

HuffPost infamously was the pioneer then-legitimate news organization that refused to pay writers for their stories. It received criticism for years for that decision, and as someone who was taught in my creative writing MFA program never to write without pay, and as someone who had previously been a professional (paid) freelance writer, I was very conflicted about writing for HuffPost. But I put on my blinders and saw it as an opportunity to get my voice out when I felt like I had something worthwhile to say. Over time, I came to regard the significant time I spent on Lyme-related writing as a kind of volunteerism. Ultimately, HuffPost made the decision to terminate such opportunities and in doing so committed to pay its “more-deserving voices” for their stories.

Here’s one of the first more-deserving voices–a meaningful, informative, life-changing essay on being a Disney princess.

Lost

It was a rough winter. It’s spring now, as of yesterday, despite the snow accumulating outside of my window.

I remain lost. I want my life to have meaning. I’ve met incredible–truly incredible–and truly deserving people with truly deserving voices through my health writing. At this point, though, I just don’t know what direction to take. My mother’s absence haunts me during waking and sleeping hours. I am admittedly hurting, and the thankless punch from the HuffPost’s dismissal letter, the shifted paradigm from full faith to almost no faith in the healthcare system, and national politics from the vantage point of living in Washington, D.C. are confounding. Where do I go from here? I guess only time will tell.

This concludes this self-indulgent and sloppy essay.

 

1 Comment »

  1. I don’t know how to console someone who has experienced such profound tradegy and loss, let alone a stranger. I feel sad and upset and frustrated reading about what your family has been through. It just seems so wrong. Yours is the first blog I’ve ever read or responded to so please excuse my lack of knowledge of proper protocol.

    I did think about you after reading earlier posts and not hearing further. I assumed you were experiencing a relapse or going down a rabbit hole like I sometimes do. I have been pretty overwhelmed by what is going on in our country. Last night I cried when I learned about the Bolton appointment. I am resolved to get more active as much as possible as a way to hold on to hope and the possibility of positive change. I will march in Boston tomorrow and I will join the Democratic Committee in my town and learn about more ways to help elect caring and compassionate politicians. I also want to do something to promote the Lyme Challenge coming up in May. Just saw yesterday how the Ice Bucket Challenge lead to recent breakthroughs in ALS research. Only problem is that I just deactivated my Facebook account out of disgust with Mark Zuckerberg. I would appreciate any info you may have on how I can proceed with this goal. Peace and love, Deirdre

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