Tuesday, June 30, 2020

Wear A Damn Mask



I’m putting this out there because it needs to be said. I can see that as a chronically ill person and someone who is #HighRiskCovid19, as the world opens up, mine will be getting smaller. I’m seeing pictures of people on Facebook unmasked in bars and crowds. I guess even going to some peoples’ houses will be off limits because of the number of places they’ve been and the number of people they’ve been around, unmasked.

Just remember, this isn’t about you. I wear a mask for myself, but I also wear it because I would never want to be that person that is unknowingly sick and gets someone else sick. I care enough about other people to wear a damn mask. I read something that said if you are refusing to wear a mask and you think Black Lives Matter, think again, since COVID is hitting Black communities worse than many other groups. So if you really think Black Lives Matter, show it by wearing a mask.

I know that America is built on the ideal of individualism. And clearly, this ideal may lead to the downfall of America. Rather than think of wearing a mask as a threat to your own freedom, why don’t you think of it as a sign of solidarity and respect to wear a mask? I’m not telling anyone how to live their life, but I’m telling you how I’m going to be living mine. Because rather than go to the bar or eat in a restaurant, all I want to do is see my family and close friends. My sister is moving to another state and I’ve barely gotten to spend any time with her in the last three months due to COVID and that absolutely sucks. I think you’ll survive some missed nights out at the bar. I’ll never get back missed time with the people I love, and given what happened to my dad, I know how precious time is.

So for now, I guess my trips to the grocery store every other week will continue to be my main mode of excitement for the foreseeable future. And if I get invited somewhere, it’s likely my declinations will become more frequent. With chronic illness, it’s always a possibility that I’ll have to decline invitations and cancel plans at the last minute, but as much of a pain as that was, it was on my terms. It’s because I didn’t feel well or was in too much pain to partake in an activity. Now, I will be doing this for reasons external to me. I will being doing it because a friendly invitation will be sidetracked by concerns over where you’ve been or who you’ve been in contact with because you’ve established a pattern of behavior that proves who and what you care about, and it’s clearly not me or anyone else.

I’ve seen a lot on social media of people with Cystic Fibrosis posting pictures wearing masks and a pulse ox, and showing that their oxygen levels are fine, so yours should be too. I’ve also seen the fake card that was created by people trying to exploit the Americans with Disabilities Act (ADA) by claiming they have medical conditions that prevent them from wearing a mask. If that’s true, don’t wear a mask, but if you’re making stuff up, wear a mask. It’s that simple.

Wearing a mask could mean the difference between quarantine ending and life slowly returning to whatever the post-COVID “new normal” will be. Not wearing a mask could mean continued, unfettered spread, another round or multiple rounds of full lock down, and more deaths. 

If you’re not wearing a mask simply because you don’t feel like it, or you think rules don’t matter for you, or you feel that wearing a mask is an affront to your freedom of expression, remember this moment. Remember when you were called on to do something for someone else and instead you put your own needs above everyone else’s. Remember when you decided that a night at the bar was more important than the lives of anyone you may come into contact with. Remember that thinking you don’t have to wear a mask because I will is inherently ableist. And remember that not wearing a mask flies in the face of Black Lives Matter.  

In a nod to Michigan Governor Gretchen Whitmer, maybe you couldn’t “Fix The Damn Roads,” but maybe everyone can learn to “Wear A Damn Mask.”

(And I know someone will say that I was unmasked in the picture I posted on Facebook with my husband wearing our Jews For Black Lives shirts. True. But I was outside and the only other person there, who took the picture, was my brother-in-law. We took our masks off, more than six feet away from him, he took the picture, and we put our masks back on.)

Friday, June 26, 2020

Book Review: “The Things We Don’t Say: An Anthology of Chronic Illness Truths”*




I love reading, but reading is one of the things that has taken a hit during the quarantine. My attention span has suffered. “The Things We Don’t Say: An Anthology of Chronic Illness Truths” by Julie Morgenlender came at the perfect time. It even comes with a disclaimer that you don’t have to read it all at once. I’ll have you know, I didn’t read it all at once, but I got about 100 pages in before I took a break.

The stories contained within the book’s pages are just as heartbreaking as they are all too familiar. They speak to the losses that we all have endured when having to change our lives because of chronic illness. They speak to the relationships that survive the confines of chronic illness and the ones that do not. They speak of the guilt we feel for the things we can do and the things we cannot.

I think the book also brings to light the disproportionate impact that chronic illness has on women. Maybe men are afraid that sharing their chronic illness experience will make them not seem as manly. So the few male stories in this book make it unique and provide a perspective that isn’t always included in the chronic illness narrative.

Just like Marcia Allar’s “Life Savers,” the stories in this book come in different colors and flavors. They are not one size fits all. Some are more narrative while others are more “how to”.  

This book takes me back to an experience I had early on in my chronic illness journey. I had just finished my first year of graduate school, and was in the hospital getting steroid infusions. I had never been in that environment before. The girl in the chair next to me was being treated for cancer. I was trying to get the nurses attention, and I asked the girl if we were allowed to listen to IPods. She looked at me and said, “You can do whatever you need to, to get through it.” At that moment, I felt like diagnosis didn’t necessarily matter in terms of community. In that moment, our diagnoses didn’t matter, what mattered was our shared experiences as chronically ill people. And this book left me feeling the same way. I may not have fibromyalgia or ehler’s danlos or a host of other conditions that the authors in this book write about, but regardless of diagnosis, the lived experiences are much the same.

I related to Katherine Ernst’s experience of a doctor questioning another doctor’s diagnosis and asking why she hadn’t fought the other doctor, even when the new doctor is asking her to trust them.

And as Sónia Lopes writes, “But no one told me that the social aspect of living with a chronic debilitating disease like this would be the hardest for me to manage.”

I’m struck by how, 12 years into my illness journey, so little has changed. Young women are going years with serious symptoms, battling to find doctors that will take them seriously. Throughout, I found myself shaking my head, both in agreement and dismay.

I want to thank Julie Morgenlender and the other authors who contributed to this book for sharing their stories. 

Now more than ever, we need books like this. We need our voices to be heard and our stories to be told. And we also need to amplify the voices of those who aren’t given the opportunity to speak.

If you want more information on the book visit Chronic Illness Truths.

To purchase print or digital copy of the book, it is available on Amazon.

*****

Morgenlender, Julie. (2020). The Things We Don't Say: An Anthology of Chronic Illness Truths. Three Barrel Bluff.


* I received a free digital copy of this book from the author. However, the review presented here is solely based on my personal opinion of the book.

Wednesday, June 10, 2020

There Are Many Ways To Protest


Over the last few weeks, as someone who is #HighRiskCovid19, I have struggled with whether or not to attend a protest. I fully support Black Lives Matter and I truly believe that there are significant changes that need to happen in our society. I also know that my struggle of whether or not to attend a protest is part of my privilege.

Clearly, I haven’t been the only one struggling with this:


Therefore, I think it’s important to talk about other ways that we can “show up” without having to be present in person at a protest. One way that I’m doing that is to expose racism when and where I see it.

A friend shared a post about vile, racist tweets that had been connected to the Chief of Police of Shelby Township. I won’t post those here because they are highly offensive, but if you Google any of this, you will be able to find them. When I looked at the picture of who the tweets were being attributed to, before I even saw the name, my heart sank. I know him. I’ve dealt with him. And I am, unfortunately, not surprised.

How do I know Robert Shelide? I won’t rehash what happened to my dad. You can search my blog as I have frequently written about it. However, I had horrible interactions with this man, who was the Deputy Chief of the Southfield Police when my dad was missing and ultimately, was found dead.

I sent the following letter to every member of the Shelby Township board, and a variety of local and state officials and members of the media:

To Whom It May Concern:

In the flood of 2014, my dad went missing. My mom attempted to report him missing and no police departments would take a report. At the time, my parents lived in Southfield, but my dad worked in Shelby/Clinton Township. The Southfield Police Department was particularly cruel and insensitive, especially my interaction several months later with, at the time, Deputy Chief Robert Shelide.

My grievances with the Southfield Police Department have been aired, but by the time that we had an opportunity to sit down with the Chief of Police, Mr. Shelide was no longer employed with the Southfield Police Department, so they refused to address anything related to him.

I had written a letter to the Southfield Police Department outlining what had occurred with my dad and where I felt they had failed in serving and protecting. I received a phone call from Mr. Shelide. Amongst other things, he told me that the steps I was requesting wouldn’t have been taken “for a family member of the mayor.” He also told me that my dad could have been “at McDonald’s or in a hotel” and “that he didn’t warrant departmental resources.” As you can imagine, this was shocking and devastating to me. My dad, in fact, was not at “McDonald’s” or “in a hotel.” He was found dead in his car the day after he went missing, not by the police, but by a person that lived on the block where my dad's car was parked.

Totally unrelated to my experiences, it has come to my attention via several social media posts shared by friends that have identified abhorrent posts that Mr. Shelide, who I have never followed on social media, has posted. These posts invoke violence against people of color. At best, they are unequivocally racist in nature. At worst, they are criminal and should not be acceptable coming from any human being, let alone a law enforcement officer.

I randomly came across the social media posts, and felt a sense of dread. Not only do I know who this person is, I have experienced his lack of empathy and compassion firsthand. I have wanted to write this letter for years, to make sure your community was aware of the kind of person that your city had as its police chief. But I resisted the urge. But what the last few days have taught me is that I have to use my privilege for good. And my concern, more than for my dead father, is that if your Chief of Police could speak to a grieving daughter that way, what else is he capable of? And how many police departments in this state will pass him around, hoping that he will magically change? If change is going to come, it has to start with the people that have power. And you do. So the question is, how will you use your power?

It is my sincere hope that by taking a long, hard look at who leads the Shelby Township police, you will take a look at yourselves. Would you be okay if the next George Floyd occurred in your city? Forget about Neal Rott, of blessed memory. Think of all those who don’t have the privilege I have to even be able to write this letter.

Black lives have always mattered, but apparently they matter more to some than to others, and others should not include law enforcement officers.

***

While just hours after the story broke, he was put on “indefinite paid leave” and issued an empty, thoughtless apology, it truly appears that the media is trying to squash this story. It also appears that the board, afraid of a lawsuit, is going to take their time in doing what needs to be done.

We cannot let that happen.

It’s simple. If the sentiments expressed by the Chief of Police truly due not represent the views of Shelby Township, then they need to do what needs to be done. Forget contracts and legal requirements. He has to go. He needs to be fired. And he needs to be barred from working in law enforcement ever again.

Not one person on the board or member of the police department has publicly spoken out against this man. The “he does not represent our views” trope is callous in the face of refusing to prove that by standing up and saying that his views are disgusting and should not be tolerated. How can this man keep people safe when he publicly vows to do the opposite?  

Here is a link to an online petition that is asking for this man to be fired from his job as the Chief of Police of Shelby Township:


I am *not* the author of the petition, but if you feel strongly about the changes that are needed, it starts with this. It starts with exposing racism and forcing people who glorify those feelings out.

Silence is complicity. I believe that white people no longer have the right to remain silent. When we encounter racism, we have to expose it and defend against it. You may not feel comfortable writing a letter to the degree and tone of mine. You can send form letters and emails and sign petitions. And you can do research. You can look into how much money your city spends on the police versus how much they spend on other things, like health. And you can let your local and state officials know that we need to prioritize health, schools, and other social services. For example, in 2017, Detroit spent $310,200,000 on the police, 30% of the general fund budget, and $28,900,000 on health, 1.6% of the general fund budget (This report outlines police spending in other cities, as well: Freedom to Thrive: Reimagining Safety and Security in Our Communities).

It’s not hard to see how we got to where we are, with a pandemic raging that is disproportionately effecting black communities. We can’t talk about the police without talking about health, and we can’t talk about any of this without addressing the structural inequalities and systemic racism that exists in our country.

I certainly have more to do, but I hope that by exposing racism and speaking out against it, I am taking the first step to becoming anti-racist.  

Wednesday, June 3, 2020

Being Chronically Ill In The Age of COVID-19



I happened upon the May 23, 2020 issue of the New York Post and was greeted with “One Man’s Plea” regarding re-opening New York City, the crux of which was, “The elderly and infirm can continue to be isolated,” but the quarantine must end for everyone else.  

This trope makes me so angry.

Why is this narrative okay? Why is this thought process okay? Because we’re useless? Because our lives don’t matter? What I’ve learned from this pandemic is that a lot of people lack a sense of social responsibility. It should not be every person for themself. Like refusing to wear a mask because it may make you physically uncomfortable temporarily. But it may also save other peoples’ lives if you are asymptomatic but have COVID-19. Everyone’s actions in regard to this virus have consequences on other people. It’s not just you endangering your own life.

While I have been very much in support of the Governor of Michigan throughout the pandemic, I am somewhat dismayed at the lack of effort that has been put forth regarding at-risk populations.

Did you know that in the Governor’s plan for re-opening Michigan it is strongly suggested that at-risk people shelter-in-place through Stage 5? Stage 6 is post-pandemic. As in, there is a vaccine. Best case scenario, that’s six months away, but more than likely that’s 18 to 24 months away. And that’s really only if it’s not a live vaccine because that will mean that many at-risk individuals, including myself, won’t be able to get it. And that would mean that everyone who isn’t at risk that is already calling the vaccine “the government’s excuse to microchip us” would have to put their theories aside and get vaccinated for the sake of others, because many of us who would get it won’t be able to.


I’m sick of the crying and bellyaching about how people are minimally inconvenienced by wearing a mask. I’m angry that a lot of people are willing to throw away the lives of others. The “why should I give up my freedom for your life” is more “why should I give up my life for your freedom.” But really, it’s a false dichotomy. Such questions and decisions diminish us all. It is inherently ableist to think that the “elderly” and “infirm” can be thrown away.

We’re being forced, not into institutions, but into our own homes, where it is presumed we will stay and be quiet until the appointed time it is designated safe – if that ever happens – for us to re-enter the world. But we all have lives that exist outside of the four walls of our homes. And those lives are vibrant, valid, and as important as any one else’s.

So while I’m happy that everyone else’s life is opening up, restaurants and bars are re-opening, I’m sorry to say that I won’t be going. Because the reality is, the only one who is going to keep me safe is myself. And for now, that means staying at home.

***

As of this writing, the guidelines have changed. But at-risk individuals should still practice social distancing and wearing masks, while apparently no one else has to. Staying home is safer. Now we have a target, not on our backs but on our faces. This everyone-else-can-go-about-their-business is bullshit. And it’s tacky. The state basically re-published the guidelines and plastered on it “Reopening programs and services for older adults age 60+ and vulnerable individuals with underlying health conditions.” This isn’t progress, this is politics.

And we weren’t asked. As far as I can tell, no patients or doctors were consulted in this decision-making. And we deserve a place at the table. No evidence has been provided. And maybe there isn’t any, but if there isn’t, that should be disclosed. “We have no evidence to support our poor decision-making. Consult your health professionals for guidance.” Whatever. That’s better than what we’ve got. And what we’ve got is nothing. If, after careful thought, consideration, and planning, it is still deemed that the most realistic option is to shelter-in-place as much as possible, I will take it. But I cannot and will not accept no effort or thought being put into this decision.  

The reality is, this pandemic has brought into full relief the injustices that have always existed in this country, where minorities of any kind are at higher risk for worse outcomes of everything, including COVID-19. And as the last several weeks have shown time and again, at risk of death from many things other than deadly diseases, simply because of their minority status. 

So if this feels like a kiss off, it probably is. As I railed against this to a friend who is not chronically ill, she said that the state should have just put a post-it note on the document that said “be careful, good luck…” It’s basically akin to “stay safe out there.”


This is a failure of epic proportions. It’s not just a healthcare system that was unprepared, it’s a government that has been teetering on the brink for longer than we’d like to admit. It’s that America has never had a good safety net in place for the most vulnerable among us. And to think that altruistic people will remain so when they are out of work and struggling themselves is completely unrealistic and puts the blame everywhere other than where the blame should be.

So before newspapers like the New York Post give front-page status to a whiny baby, maybe they can make room for the people that need their voices to be heard. Maybe someone, for one minute, can try to understand that while I am lucky to have a home that is livable and clean, has functioning utilities, and is safe, being at home indefinitely may not be the best option, physically or emotionally, for me or any other high-risk person.

Ultimately, it’s about what we are willing to accept, as individuals and as a nation. Mitch Albom wrote more eloquently than I ever could about “acceptable losses” and how much we are willing to lose for the freedom to leave the house and move through society unfettered while the pandemic rages on, whether we want to admit it does or not (https://www.freep.com/story/sports/columnists/mitch-albom/2020/05/27/mitch-albom-coronavirus-100-000-covid-19-memorial-day/5251822002/).

Truly, I have very little desire to be anywhere but home right now. It’s not that I don’t yearn to get back to my life as it was before March 13, 2020. I do. But right now, everyone is a threat, those wearing masks less so than those who aren’t. I will live in a bubble that I didn’t consent to.

My chronic illnesses have morphed into something that I clearly haven’t accepted because in 12 years, with the exception of once, I’ve never had to accept this kind of personal protection. I never signed up for being chronically ill meaning that I’d be afraid to leave the house and I’d be afraid of every single person that I came in contact with. I never considered that what could be floating around in the outside world could be worse than what was going on inside my body. And I never expected that when everyone had to be weary of that threat that the resounding response would be “Not me. It’s not my responsibility.”

Because we know that “The elderly and infirm can continue to be isolated” isn’t just the plea of one man, but the plea of many.

Tuesday, May 19, 2020

A House Divided, But We Stand United


I am lucky that I have a job that is allowing me to work from home, potentially for the long haul. I am lucky that I have a company laptop, and that our house has a reliable internet connection and all of the other necessities that I need to be able to do my job from home.

And just to be clear, my company wasn’t set up for this. My set-up at work includes a laptop and an additional monitor, while the normal set-up is two monitors. I started working from a home a week before all hell broke loose, not realizing that this would become anything other than temporary situation.

On the other hand, my husband works at a big box store that has been open for the duration of the pandemic as it has been deemed “essential”. (No offense to my husband’s livelihood, but this #HighRiskCovid19 wife disagrees with that designation) His job cannot be done from home. His continuing to work unfortunately increases the risk level of bringing COVID into our house. Due to other issues, my husband didn’t work for several weeks when the pandemic was really starting to surge in Michigan. One thing his employer has done is provide a fair amount of additional paid and unpaid time. My husband basically takes several days off a week to limit exposure, but also to stretch the amount of time off he has to utilize.

And to be honest, we had the conversation of going without his income. If he felt the risk became too great, he could take unpaid leave. Unfortunately, when you live with someone who is #HighRiskCovid19 but doesn’t have COVID-19, that scenario doesn’t fit into any of the extra-extra time off categories. So just because I’m high risk and my husband lives with me and loves me, doesn’t mean that his employer (or anyone) feels that he should get over and above time off to minimize his risk, which subsequently becomes my risk. And it’s not just his employer. There seems to be a black hole for this type of situation.

And making this is decision wasn’t just about me. We had to consider my husband’s mental health. What would it be like for him to not have anything to do and nowhere to go all the time? On the flipside, we don’t want his mental health to suffer if the concern for risk at work becomes too great and he is anxious all the time about the risk to either of us.

While we could live without my husband’s income, we cannot live without his benefits, which means he has to work enough so that his paycheck is enough to cover our benefits.

We are lucky in so many ways. But this struggle is real. The decision for my husband to go back to work after his initial time off was something that we both agonized over. Because once the cat is out of the bag, there’s no turning back. If he ends up exposed, forget everything.

These are the steps we’ve taken to do what we can to minimize the risk of my husband getting exposed to COVID-19 and bringing it home and exposing me:

1.       My husband wears gloves and a mask at work;

2.      He leaves a change of clothes in the garage, changes in the garage when he gets home, and leaves his work clothes in the garage until he washes them;

3.      We got him his own thermometer to take his temperature – doesn’t seem like the best thing to share at this point (and I don’t trust the inexpensive forehead thermometers that we could share);

4.      We have a very small stock of our own gloves and masks so that he isn’t relying on his employer to provide PPE;

5.      He uses disposable items to transport and eat his lunch rather than using items from home, like reusable containers, bags, and utensils, so these items are not being brought back into our house. 

Of course, by virtue of my husband leaving the house and going into an environment with co-workers and customers coming from all over, there will never not be a risk. But we are doing the best we can with the situation we have, knowing that we are incredibly lucky to both still have jobs during this difficult time.

And while we are divided in our ability to work from home, we are united in the quest for both of us to stay COVID-free.

Tuesday, May 12, 2020

In This Age of Connection, Why Do I Feel So Disconnected?


Today, we are more connected than ever. There’s Facebook, Instagram, Twitter, Snap Chat, text, email, snail mail, Zoom, Face Time, Houseparty, and the list goes on and on. (I’m almost in my mid-30s, I’m trying to keep up with the times, but it’s getting hard) There are so many ways to connect outside of IRL in this age of social distancing, yet what I crave is connection. IRL.

I have nearly daily Zoom meetings for work and I get to see some of my co-workers that way, but it’s not the same.

And the funny part, coming from this introvert, is that all I want to do is see some of these people and hug them. (Ew, gross, so not a hugger, can’t believe I would even suggest that, so not work appropriate) And I know that when I do eventually get to see them, I won’t even be able to do that.

The prospect of continuing to work from home indefinitely is daunting. Not as much the productivity part of it as much as the camaraderie part of it. As much as co-workers can sometimes get on our nerves, I miss most of mine. I miss being able to walk from my office to their desk to talk to them or ask a question. I miss being able to wave “hello” in the morning when we arrive.

What’s interesting is that nearly all of my chronic illness relationships were born, and built, online. There’s only a few handfuls that I’ve gotten to meet IRL. And all of those relationships have truly been life sustaining, but we’ve never known any different. Being spread across the country and world, IRL is a luxury and not a guarantee, with different diagnoses, and different levels of illness and ability.

But now, even the relationships that were born and built IRL are being forced out of IRL and into the world of Face Time, Zoom, and Houseparty. And I really don’t like it. Like I said in my last post, you can keep malls and movie theaters, and I’ll add casinos, gyms, theme parks, and beaches. I don’t need those. I can make my life smaller. But what I can’t do is live without my peeps. I just cannot.

I saw my mom the other day very briefly and I hadn’t seen her in over a month. A MONTH. And she literally lives 10 minutes away. Some might say we’re being overly cautious and that we aren’t living life at our own expense. But honestly, as someone who is #HighRiskCovid19, is being too careful a thing?

Is my feeling of disconnection the price of keeping myself safe?

I fear that if we try and go back to “normal”, it will all fall apart. Is it really possible to get together, wear a mask and stay six feet apart? I believe the need for normalcy will trump (no pun intended) the need for being and remaining cautious.

We don’t want to throw the baby out with the bathwater. But what good is physical health if emotional health is non-existent?

I know that life as we knew it may never be the same as it was before the pandemic. I know that there are sacrifices everyone is having to make. But how do we balance the sacrifice with quality of life? How do we make life as we know it now just as fulfilling as life was pre-pandemic without jeopardizing our safety and the safety of others in the process? And how do we maintain connection when we are so physically disconnected?

Tuesday, April 28, 2020

When It’s Over, Will It Really Be Over?


I’ve had a lot of time over the past days and weeks to reflect on COVID-19 and my experiences as a chronically ill person. To say I’ve been scared is an understatement. At home, I feel safe. I’ve barely left my house in over six weeks, and don’t plan to unless I absolutely have to.

From a personal standpoint, what I’m struck by the most is that I’ve once again been forced to face my own mortality. This isn’t the first time, and I know it won’t be the last. And don’t get me wrong. The specter of this hangs over my head as a chronically ill person all the time, but there are some times when I feel it more than others, and now I’m not sure I’ll ever be able to not think about it.

When I was 7, my grandfather died. When he died, I think that was the first time that I really understood what death meant, and that eventually it comes for everyone.

When I was 22, I was diagnosed with lupus and rheumatoid arthritis. It felt like until that point, I had been plugged into a wall outlet and the plug had been pulled out. It felt like I was dragging an impossibly short cord.

Two years after my diagnosis, I got a pneumonia vaccine at the recommendation of my rheumatologist. To this day, no one is sure if the reaction I experienced was due to an allergy or because the vaccine had been administered incorrectly, or both. I spent three days in the hospital, almost lost my arm, and could have lost my life. It was the first time that I realized that these illnesses could kill me.

When I was 29, my dad died unexpectedly as a result of severe flooding in Michigan.  To that point, the worst thing that had ever happened to me was getting diagnosed with multiple chronic illnesses. When my dad died, the worst thing that ever happened to me happened to someone else, happened to someone that I love(d).

Many things happen in life that we will never understand. They happen indiscriminately. But what really gets me about COVID-19 is that there were warnings. There were signs. There were things that could have been done to prevent it or mitigate its effects. And now, daily, hourly, people in our country are suffering and dying. And for what?

And those of us with chronic illnesses/disabilities have targets on our backs now more than ever. I know that I fear getting sick and not being able to get care if it is rationed to the degree that people are talking about.

I’m also frustrated, because as things start to reopen, I know that my life will not reopen like it will for healthy people. I realize that my life won’t get back to “normal”. And that’s when I realize that I lost the luxury of “normal” 12 years ago, when I was diagnosed with multiple chronic illnesses. I lost the luxury to make certain decisions that I would have made indiscriminately before, and are now made at the behest of my chronic illnesses. So for all those who celebrate the “new normal” that will come, for me, there will be a “new new normal”. Another mind- and heart-shift amongst many as a chronically ill person.

Right now, I don’t know what that “new new normal” will look like and I don’t know when it will occur or it already has. All I know is that when I left work the second week in March, knowing that I would be working from home, I never imagined that there wouldn’t be an end date. I never imagined that going to the grocery store, something I clearly took for granted before, is totally off limits to me now. I never thought I’d have to think about every move I make or every place I go. And I never thought I would have to justify my very existence to people I thought were friends. But in the age of COVID, nothing, and everything, is off limits at the same time.

The only thing that makes me feel more “normal” these days is that because COVID has sidelined everything, I’m going to doctors on a more normal schedule. My gynecologist cancelled my six-month follow-up and my dentist cancelled my every-three-month cleaning. Makes me wonder how essential they were all along. But for now, with no problems to speak of in those areas (knock-on-wood), I’ll take the break. Because going to the doctor right now, if I don’t need to, feels like more of a risk than it’s worth.     

I am grateful for many things, and know that I am in a position that not everyone can be in right now. I have a job that is allowing me to work from home. I still get a paycheck. I am able to afford what I need. But I miss my family. I would like to be able to see them more than just through my side door. And that’s all I want. I don’t care about going to the mall or the movie theater. I just want to spend time with them, because as this pandemic has reinforced, life and time is something that we aren’t guaranteed.

Saturday, February 22, 2020

When Health Is The Focus Again


It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

Friday, October 4, 2019

In the Clinical Trial of Life, You Are Always an N of 1 (RD Blog Week #5)


I’ve felt this for a long time, but I’m finally writing it down, because I think it’s good advice for newly diagnosed patients, and I wish someone would have told me something similar when I was first diagnosed.

Clinical trials are scary. Many patients feel they would only participate in a clinical trial if they were desperate, in a last ditch effort if no other treatments work.

But the reality is, in the clinical trial of life, you are always an N of 1.

No matter how tried and true a treatment is, no doctor can ever adequately tell you or know how you will react to a medication. Sure, by prescribing something, they may be acknowledging that the perceived benefits are greater than the perceived risks, but there is never really any way to know for sure until you’ve tried it yourself.

No two patients are alike. When you’re first diagnosed, everything feels scary and unknown. And you look for common ground, for people that are going through the same things that you are. And that’s great. It’s 100% necessary to find patients like yourself.

But again, the reality is, in the clinical trial of life, you are always an N of 1.

Having both lupus and RA, I took Humira with the acknowledgement that it could make my lupus worse. However, I never imagined that six months into treatment, I would suddenly have the worst lupus flare I had ever experienced, which left me almost completely bedbound for two weeks. When I finally realized that I couldn’t brave the storm any longer, my PCP suggested that I see my rheumatologist as it sounded to her like the flare may have been the result of Humira.

When my rheumatologist told me to get a pneumonia vaccine, I did so without question. I ended up getting cellulitis and almost lost my arm.

You are the only expert in yourself. Even when you’re body betrays you and has gone rogue, you still know your body better than anyone.

So if you approach a clinical trial the way you approach any other treatment, or vice versa, it normalizes it. It doesn’t make it as scary.

Because in the clinical trial of life, you are always an N of 1.


Thursday, October 3, 2019

We Are All Part of This Community, No Matter How We Are Doing (RD Blog Week #4)


As of late, I haven’t been blogging. It’s not so much that I haven’t had things to say as much as it has been a struggle about whether or not I should say it. I hesitate to express feelings I’ve held for quite some time. But, here goes…

I have made great friends through social media, blogging, and the chronic illness community, and I am forever grateful for that. However, I feel like so often it turns into a competition of who has it worse.

So, when I’ve been doing relatively well, I hesitate to share it. In the last two years, I’ve bought a house, gotten engaged, and gotten married. And while I know that the friends I’ve made through this community are happy for me, it’s hard to confront the larger community when so many others are struggling.

And it’s not that I don’t struggle with lupus and RA. I definitely do. It’s just that the suffering is no longer constant for me.

I’ve wanted to share everything that’s been happening, both the good and the bad, but it’s hard. It’s hard when you’re happy and want to celebrate it. It’s easier to rail against the bad stuff – medications not working, doctors not listening, struggling to stay above water when you feel like everything is closing in around you – because you know that others can relate. You’ve heard it all before, over and over again. You hear less of the good things.   

And it diminishes everyone to not allow the sun to shine through the clouds. It diminishes all of us, because we are not just these illnesses. We are wives, husbands, sisters, brothers, daughters, sons, friends, and so much more.

We are who we are, and we should never have to apologize for that, or fear that having a good day and sharing that, is going to anger those who aren’t in the same place.

I think that as a community, in order to be cohesive, we need to celebrate our triumphs and our tragedies, our highs along and our lows, whether medical or otherwise. We need to support each other, not tear each other down.

It starts with a simple question: How are you? That’s pretty basic, right? But what’s not so basic is to actually listen to the answer to the question, and to enthusiastically respond, regardless of what the other person’s response is. If someone’s doing well, be their cheerleader. If someone’s struggling, encourage them.

We’re stronger together. We’re stronger when we display a unified front, when we fight as sisters and brothers in the struggle, no matter what stage of disease we are in. We must acknowledge our shared experience. Our shared experience is what brought us together in the first place, and our shared experience is what will keep the community going.

In a world filled with so much divisiveness and strife, we need to be part of the solution rather than part of the problem.

The sooner we stop fighting with each other, and start fighting for each other, the better off we will be.



Tuesday, October 1, 2019

Looking Back On 12+ Years of Chronic Illness (RD Blog Week #2)


When I was diagnosed with lupus and RA 12 years ago, I thought my life was over. I was in my first year of graduate school. Professors and my doctors told me that I should drop out of school. I didn’t listen. But I’d be lying if I said that having lupus and RA didn’t change things for me. They definitely did.

Deciding that I didn’t want an academic career was a difficult choice, but one that I made. I knew I wouldn’t be happy or competitive in that kind of environment. It shouldn’t be that way, but at least when I was preparing to enter academia, it was.

Getting a second master’s degree in health advocacy  was another choice that I made. Looking back, I don’t regret anything (except my student loans), but I do wonder if things would be different, or if I’d feel the same way I do now.

Getting my first full time job after being a student until the age of 30, buying a house, getting engaged, getting married, and considering starting a family, are honestly things I couldn’t have imagined 12 years ago, when my life seemed to be taken over by lupus and RA. All things chronic illness.

Some things in my life have clearly settled, but in terms of what I want out of a career hasn’t. I’m trying to figure out where I belong and where my skills are best suited. I’m doing my best at maintaining a full-time job, but I’m interested in alternative careers.

I’ve worked so hard to fight my way through eight years of graduate school to not really knowing exactly where I fit in.

Honestly, when I first got sick, marriage and children were an open and unanswered question. Would I find someone who would love me despite, or in spite of, my complicated illnesses? I did. However, the jury is still out on the whole having kids thing, so that’s TBD.

At the core, I’m still me, just different. My priorities changed. And that’s how life is, even without illness.

Now, I do have a desire to have a family, so what that’s going to look like is going to be interesting. And that’s where a lot of my focus is right now. The specter of having to go off of medications that I have come to rely on, and what that will mean for my home and work life, is a huge deal. There are so many unanswered questions.

I think a lot of what having a chronic illness does is that it forces you to face unknowns that healthy people don’t necessarily have to think about.

For 12 years, my life was almost entirely consumed by chronic illness. Now it’s consumed by things that are normal for people my age; maintaining a job, exploring what else is out there, dating, engagement, marriage, children.

Obviously, chronic illness colors all of those experiences and makes most of them more difficult. But I’m no longer just a chronically ill person. I was someone’s fiancée and now I’m that person’s wife. I hope someday to become a mother.

In a way, it’s sad that chronic illness isn’t my complete focus anymore, but it’s also refreshing.