Tag: Psoriatic Arthritis

Nepenthe

Over the last couple of months as spring has turned into summer, I have found solace spending time outdoors. While I have deferred real hiking in well-known places, the dry heat and flat desert-like walks over the border in El Paso have provided me with a number of things I need: the mood-lifting and weight loss benefits of exercise, continued healing from spinal surgery, arthritis relief, fresh air, and safety and solitude away from others.

Suckerpunch

The last several weeks have been among the most difficult in my Foreign Service career. From my perspective, life has been worse overall these past two months than during the prior 14 months of the pandemic put together. This might be hard to understand and even a little hard to believe, given how many people – at least in the U.S. – seemingly feel their lives are finally returning to some sense of normalcy. But it isn’t hyperbole. As an immunocompromised person who has been living with autoimmune disease since my late 20s, and who is currently slipping into the public policy and social chasm between the vaccinated and the unvaccinated, I truly feel left behind and isolated during this stage of the pandemic. Although I continue to be employed, meet my weight loss goals, and heal from back surgery, the rest of my life has become a slow rolling nightmare I never anticipated. I’m surrounded by a society that feels ignorant and selfish at best and eugenicist at worst, and rocketing towards a future where COVID-19 is endemic and those of us with compromised immune function face never getting our normal lives back, as everyone unapologetically eats cake right in front of us that we once talked about eating together.

For Immunocompromised People, The Pandemic is Now + How You Can Be An Ally

The United States is opening back up after almost 16 months of the coronavirus pandemic. According to Google, as of today about 152 million (or 46%) of U.S. residents are fully vaccinated against COVID-19. I have seen other figures that say half the country is vaccinated, and a quarter does not intend to get the vaccine. But for nearly 10 million vaccinated American adults like me with immunocompromised or immunosuppressed conditions, early data is showing vaccine efficacy may provide low or even nonexistent protection against the deadly virus. Medical experts warn immunocompromised people should get vaccinated, but continue maintaining the same masking and social distancing protocols we have the past year. In other words, get vaccinated, but behave as if unvaccinated. For how long, no one can say yet.

For the immunocompromised population, the so-called end of the pandemic feels like a party we have not been invited to but cannot leave. As people unmask around us and celebrate their safety and return to normalcy, public policy – and apparently most everyone we know – has decided the rights of the chronically ill to also be safe and protected from the virus should be sublimated by the convenience and comfort of the healthy, able-bodied majority. Amidst soaring hopes that society will soon be totally back to normal and unreasonable expectations about what activities are safe and medically appropriate for the immunocompromised to participate in, is it any wonder immunocompromised people could use more allies right now?

Unmasked

My last post was a round-up of reader questions to the blog inbox, but in the last several weeks since I’ve written a ‘real’ update, so much has happened. The world’s eagerness to get back to life as we knew it pre-pandemic is progressing quickly. Although only about 41% of the U.S. population is fully vaccinated as of May 29, I’m seeing an awful lot of the lower halves of people’s faces.

Tumbleweeds

For the last several weeks, I have been filled with ideas for blog posts, but have been working so many hours that I have deferred them to a future, calmer time. In preparation for a long-awaited spinal fusion surgery this coming week, I have been trying hard to clear the decks at work and at home. I don’t know if I have been succeeding, but one thing has become increasingly clear: I would not have been able to put the recent amount of hours on the clock I have without crashing and burning, were it not for the protective bubble of pandemic-related health and safety protocols around me. For the first time in my adult life, I have now passed 13 consecutive months with zero viral illnesses.

Isolation, Day 32

Yesterday we passed the one month mark since we self-isolated in our Arlington, VA apartment to try and hide from the coronavirus. During that time, I have taken two walks for fresh air, sat outside my building once for 15 minutes, walked one time to the post office wearing a mask, and drove two miles to DC for blood tests at my rheumatologist’s practice – where I was the only patient.

For me, it hasn’t been enough; today on the third day of severe sciatica pain and back spasms, it became clear to me that I need to get more exercise, immediately. Being sequestered for weeks in a tiny apartment like an astronaut on a spaceship is not a normal condition for a human being. But on the other hand, maintaining social distance from other people in such an urban hot spot has to take precedence for V and I, who are both at higher risk to catch the coronavirus. My immune-compromised status has sufficiently scared us to just stay in the apartment, but the consequences of that for weeks or months on end are also undesirable. And so last night I was very pleased to discover on my 90-minute test walk (that I began just after 10 p.m.) that while others can have the sunny spring days, the nights are all mine.

Breaking the Ice

Today was the 17th straight day of isolation inside our apartment. Two days ago, V broke his streak with a grocery run so epic, it took us almost two hours to wipe down and sanitize all of the items one by one with Lysol wipes, get rid of extraneous cardboard packaging, and soak all the fruit and vegetables in warm soapy water with just a hint of bleach. Today, I transitioned from social isolation to social distancing by going for a two-mile walk in the urban jungle of Arlington, VA.

Strange Times

The past week has been one of the strangest and most fluid in recent memory. We had a national emergency, a roller coaster stock market, travel restrictions, and the World Health Organization declared a global health pandemic. We even got in a full moon, time change, and a Friday the 13th for good measure. But it wasn’t just strange in an abstract way; witnessing panic-buying behavior and empty store shelves, coupled with news of school closures and rippling nationwide event cancellations drove the potential catastrophic impact uncomfortably close to home for many.

Year in Review: 2017 Blog Stats & Recap

In my 2016 yearly review and blog statistics recap, I bid 2016 adieu while commenting that it wasn’t my favorite year. I’m not mad at 2017, but I am excited to say goodbye to it. In 2017 I made some fond memories, experienced perhaps my greatest professional challenges and growth yet, and as usual, took recreating pretty seriously. While 2017 brought me a chance to pull out my passport on four continents, it also brought me tedious, ongoing health problems, some of which unfortunately I must carry forward into 2018. As I welcome the new year with a hopeful heart and mind, I’m thinking about where I’ve been and what I have to look forward to in 2018.

On the Road to Wellness

This past week, I took a big step on the road back to good health with a toe-straightening operation. Now that I’ve conquered the bone infection, it’s time to get my foot into a condition to resume wearing shoes without scraping and reinfecting my toe. In the ongoing saga of how-much-trouble-can-one-toe-cause, I am continuing along a trajectory toward wellness. And despite how un-Christmaslike southern hemisphere December weather feels to me, the season of gratitude is in full swing.

All the King’s Horses and All the King’s Men

Wednesday afternoon Canberra time I walked into the consultation room of my orthopedic surgeon’s office and sat down on the elevated, paper-covered examination bed. Through the window behind me, Telstra Tower stood on tree-covered hills in the distance, looking like an omen from some futuristic society. I swung my legs slowly, looking left and right at my doctor’s diplomas, medical books, and family photos. In a few minutes, I expected him to walk through the door and tell me the prior day’s MRI results, followed by the date for amputation of my toe.

Come Sail Aboard S.S. Nepenthe

In mid-October, our HHE (household effects) arrived at last. Mr. Postcard has been hard at work unpacking it, several boxes at a time. At more than 120 boxes, the piles seemed like they were never going to end. But sure enough, more and more, the look of our house is starting to take shape as familiar and beloved items are unwrapped. My Felix the Cat cookie jar. My grandmother’s crystal rose and gold decanter set from her 1944 wedding. My fireproof safe. And so many things both sentimental and practical. Things I haven’t seen since our packout last May in Tashkent and in some cases, almost forgot about. I tend to easily and intentionally shed clutter and things I don’t love, especially in this lifestyle, so the things that arrived were precious. There are two boxes yet missing and being sought, and we are getting to the bottom of that, but for the time being we are trying to turn a house into a home. As we unload and reassemble and reimagine our things into the spots where they’ll live in this new configuration we are establishing, I remind myself that through the mess and chaos, at a certain point there will be a critical mass of things falling into place.

Where the Rubber Meets the Road 

Earlier this month, I sat propped up in my hospital bed listening to an orthopedic surgeon and an infectious disease specialist address me with gentle concern. For a fourth day, intravenous antibiotics flowed into my veins through a clear tube. Beneath my red rubber-studded hospital sock, the fourth toe on my left foot felt scalded and rotten. Discolored, deformed, twice its normal size, and sporting an open wound, even the nurses said it was a stunner. I’d been neglecting it for almost two years, and my slo-mo crash was finally starting to burn. (Note: I won’t be too graphic, but the medically squeamish may wish to give this post a pass.)

Glass Half Full

Today marks the one month point since our arrival in Australia. I’m grateful for so many of the advantages of being here, which are already obvious. If I’m honest though, I can’t help but notice that my settling in time has been marked by a number of inconveniences ranging from annoying, to painful, to downright comical (in the “what-else-could-go-wrong” sense). Every officer knows that the period of adjustment and settling in at a new post can be this way, even in a lucky first world posting and with lots of helpful colleagues. My time in Sydney in 2005 and 2006 was so charmed that I really wasn’t expecting to struggle so much at the beginning here. Is it bad luck? Karma from some offense committed in a prior incarnation? Being overly impatient with myself and others? No matter the genesis, I’ve tried persistently to see the glass as half full.

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