Refocusing

It has been awhile. Several years, in fact. It isn’t that I haven’t had anything to say. I have a lot to say and a lot has happened. But mom life has taken over in the best way possible.

So I’m back. I don’t know that I’ll be talking about chronic illness as much. Though lupus and rheumatoid arthritis are ever-present in my life, they aren’t as much at the forefront as they once were.

This blog has always been about my life, and the ups and downs, and that is what it will continue to be.

I’m not even sure that anyone reads blogs anymore, so hopefully I won’t just be writing into the ether. But either way, I’m here for it and I hope you will be, too.

The Second Trimester

It’s hard to believe that at 35 weeks of pregnancy, I’m just getting around to writing about the second trimester. But such is life. Although the first trimester seemed to drag on, the second trimester seemed to fly by.

While the nausea of the first trimester thankfully retreated around week 14, the fatigue remained. I did get a few weeks of reprieve, but I didn’t take nearly enough advantage of it before the fatigue came back full force and even worse than before.

They say the second trimester is the “honeymoon” period and I guess in a way, it is. I wasn’t at the totally uncomfortable stage yet.

And while lupus and RA have continued to lay low, at around the end of second trimester, I started to feel that my immune system was starting to become overactive. Like it was trying to tell me that it had been accepting of this uninvited guest for seven-ish months, but not so much anymore. It felt like my nerve endings were sometimes on fire. And I kind of had that feeling of being tired and run down, almost coming down with something but never actually getting sick.

As far as symptoms in the second trimester, like I said, good old fatigue was back in full force, along with severe heartburn (thanks baby hair) and itching (more on that in another post; forthcoming).

As far as cravings, French fries continued, along with potato chips and popcorn. Plus protein. I’ve never been one to eat protein without a bun, but I often found myself going for straight protein (the plant-based kind, of course). Iced tea was the other thing that I majorly craved, and not just because it was summer.

Though there was nothing I wanted so bad that I woke my husband up in the middle of the night and in the most Veruca Salt-y way said “I want this, and I WANT IT NOW.” I’m sure he was relieved that there were never any middle of the night runs to the store. But we definitely have learned that our son’s carb addiction is no joke. I hope he’ll still want to eat potatoes when the time comes.

The only aversion I really experienced was to coffee still. But I anticipate that once the baby is here and I am sleep deprived, coffee will definitely be a staple in my life once again.

One thing we weren’t quite expecting was the frequency of appointments and the level of surveillance that would start in the second trimester and continue through the third trimester. Looking back, it makes sense given the high risk nature of this pregnancy, but we didn’t feel fully informed or prepared when it was sprung on us that we’d be seeing the high risk OB every other week until 30 weeks and then weekly after that, along with having fetal echocardiograms from the beginning of the second trimester every other week until 28 weeks and then a final one at 32 weeks.

For me, pregnancy has been harder than I expected. While my autoimmune stuff has been mostly quiet, my body pretty much hasn’t felt like my own the entire time.

My EULAR 2021 Experience*

This post is long overdue. Blame it on pregnancy, I guess. Way back in June, I virtually attended the European Alliance of Associations for Rheumatology (EULAR) Congress.

This was the first big conference I attended virtually and it was a lot to take in. Normally, when you attend in-person, you have to really pick and choose because you can only attend one session at a time. But because of time difference between the United States and Europe, most of what I attended, I wasn’t attending live. So it provided the opportunity, in a way, to be in two places at once, and to explore more sessions that I might have otherwise gotten to attend.

I attended sessions on a variety of topics, including:

-         The challenges patient organizations faced during the pandemic

-         Co-/multi-morbidities

-         Collaborative research and patient participation in decision-making

-         COVID-19

-         Diet and Rheumatoid Arthritis

-         EULAR recommendations

-         Fatigue

-         Health disparities

-         Lupus and pregnancy

-         Multidisciplinary care in Rheumatology

-         Stress

-         Treating Lupus to target

-         Treating Rheumatoid Arthritis 

Unsurprisingly, various topics around the COVID-19 pandemic and its impact on rheumatology patients was front and center. But so were topics that surprised me, like the impact of a vegan diet on RA outcomes. I’m vegan, so I was so there for that. I certainly could spend time here talking about individual sessions, because there were many that actually made me think that the discipline of rheumatology has come farther than I previously thought in the 13-plus years that I’ve been sick. What I really want to talk about is the culture of EULAR.

What struck me the most about the EULAR experience, even from across the world and behind a screen, is the role that patients play. EULAR has a specific track dedicated to patients, PARE (People with Arthritis and Rheumatism). Sight unseen that impressed me. But the whole feel was just much more patient-friendly than other professional conferences I’ve attended. Like the doctors presenting realized that without their patients, they wouldn’t be able to do what they do.

Many presentations included patients and some sessions were entirely patient-led (read: not presenting posters in the far corner of an exhibition hall). I’m super appreciative of EULARs efforts to recognize and elevate the patient experience, to include patients in the research process, not just as guinea pigs but as equal participants, and to allow patients to have a seat at the table, and a voice, at their Congress. Not only that, it seemed like patient participation wasn’t just a one off, once a year, let’s include patients at the conference so we look cool kind of thing. There is definitely a commitment to making sure that patients are included.

In 2021, I don’t think this idea of patient inclusion at professional conferences should be so novel, and yet it is. I just hope that other organizations can take a page out of EULARs book and do some soul searching regarding their level of patient inclusion. Nothing about us without us, right?

For contrast, read about my American College of Rheumatology (ACR) experience from 2014.

And if you’d like to hear more about the EULAR experience, and specific sessions, you can watch all of the AiArthritis debriefs on YouTube.

It was a pleasure getting to know and spending (virtual) time with the ladies of AiArthritis.

* The International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis) sponsored by attendance at EULAR and this post. However, the content and opinions expressed here are solely my own.

The First Trimester

The first trimester is tough. No one tells you how hard it's going to be. While I’m lucky that lupus and RA have been quiet, the nausea and fatigue have been a lot. RA fatigue has nothing on pregnancy fatigue, in my opinion. 

And I keep telling my husband that while this whole pregnancy thing is harder than I expected it would be, I’m grateful, endlessly grateful. There were certainly times when I never thought I’d get here, even at the end of 2020, when we were trying and not succeeding. The disappointment I felt each month as my period came was really indescribable.

And given the medications I’ve been on in the past, and the fact that it wasn’t really until our consultation with the high risk specialist last summer that gave me hope, there was certainly a part of me that wondered if pregnancy would even be possible at all.

But then, almost inexplicably, there was no period. I had been five days late before, so it didn't really phase me. And I was having a lot of cramping, so I was assuming I would just get my period (like come on, already). No one tells you that all of the traditional PMS symptoms are also early pregnancy symptoms.  

And then, after being a week late, I realized I probably needed to take a test. I didn’t even get a chance to leave the bathroom, that’s how quick it changed. And when the test came back positive, I was shocked, and excited, and scared. Waiting for my husband to get home from work to tell him the news was torture. But finding out I was actually pregnant made me realize that my body, which has at times tried to evict its primary resident (me!), was now doing an even more important job. But I felt like I had less control than ever. I’ve felt like my body is truly not my own.

Even after the positive pregnancy test, I didn’t really believe it. Going into my confirmation appointment, I just kept hoping that the pregnancy test at the doctor’s office came back positive (it did!). And then I hoped that my HCG would be higher than 5 (it was 140,000!). Going into the first ultrasound, I was like “please, please let there actually be a baby in there.” I don’t know if it’s Jewish superstition or first time mom anxiety or chronic illness anxiety or a combination, but it’s been a hard mix of wanting to be excited while dealing with my feelings of not being able to trust my own body.

It’s weird to go from having no control over your body without agreeing or consenting to that due to illness, to signing up for that for nine months. But it’s different. As my OB told me, “You’re not ill, you’re pregnant.” Though I want to say “then why are we medicalizing the heck out of this experience?” But I know that the end goal is a healthy baby and a healthy me, so if that means a million and one doctor’s appointments, I’ll take it.

In the first trimester, I lost five pounds, which was slightly distressing to me. But my doctor doesn’t seem too concerned. And I’m sure that as the nausea retreats, I’ll start eating more and will make up for lost pounds.

I knew going in that during pregnancy, I wanted to maintain the vegan lifestyle that I’ve been living for about two and a half years (I was vegetarian for 15 years prior to going vegan). And I was upfront with both my regular OB and the high risk OB about that before I was even pregnant. Don’t try to convince me otherwise.

It’s weird, though, I have been craving protein – thankfully not of the animal variety. But I can literally say I’ve never craved protein in my whole life prior to being pregnant.

Aside from protein, I’ve craved French fries, which is weird because I’m not really a French fry person. Early on I also craved smoothies because it was about all I could stomach. I’ve also had a propensity for avocados and clementines, not so much in the last few weeks, but definitely for several weeks earlier on. Thankfully, none of the cravings have been so bad that I’ve woken my husband up in the middle of the night and been like “I need French fries now.”

As far as symptoms go, I’ve had fatigue, nausea, acne, and been freezing cold all the time, even when it’s 85 degrees outside.

All I can say is that so far this experience has been wild. It has been an adventure already and we’ve only seen our little bean once. I’m starting high risk appointments every other week, so I’m sure we will be seeing a lot more of him or her. And I hope that things stay calm and uneventful. 

I’m Pregnant. We’re Pregnant. We’re Having a Baby.

Well, that’s the big announcement. My husband and I are expecting. 

We’re so, so grateful. There was a large part of my 20s where I couldn’t even get a doctor to entertain what it would look like for me to get pregnant. And now, at 35, here I am and here we are. 

I’ll have more to say in a post devoted to the first trimester, including when and how we found out, etc.

13 Years

This is a visual representation of my story that was created for me by Rebeka Ryvola as a participant in Convening The Center.

It has been 13 years since I traveled from the kingdom of the well to the kingdom of the sick. And 13 years since I began to mourn the loss of my previous life.

Unsurprisingly, much has happened in that time. Aside from adding diagnoses and oft changing medication regimens, I’ve earned two master’s degrees and a PhD, I moved from Michigan to New York and then back to Michigan, I’ve lost relationships and gained some, lost my father and a host of other relatives, gained a house, a husband, and a dog.

I started this blog as a way to keep my family and friends updated on what was going on with my health, all in one place so I wouldn’t have to share the same stories over and over again. I also started it so that I wouldn’t feel so alone. At the time, I thought that I was the only 20-something in graduate school dealing with what I was. But as the title suggests, I guess I started it subconsciously as a way to get closer to myself. Looking back, blogging was a way to control the narrative of my life that felt as if it was spinning out of control. It was my story, in my own words. I am sure there are pieces of the story that those involved would disagree with. But when you spend so much time in waiting rooms staring off into space and so much time on exam tables, staring at the ceiling trying to disassociate from what is happening, you are constantly writing the story. I was creating the narrative in my head, not only to capture it and remember, but sometimes also to forget.

In 13 years, there have been indignities, often at the hands of people who were doing their jobs to the extent they were able but failed to see the person in front of them. Failed to see the 22 year old with ambition and wit and sarcasm. Failed to see the person I was losing and the person I was becoming.

I hate these retrospectives because they force me to remember, and often what comes to mind are the worst experiences. The time I had to poop on cue into a machine that had me suspended in the air. The physical therapist who helped me with my constipation issues who un-ironically had the unfortunate last name of Butts. The 27 tubes of blood that were taken from me at my first rheumatologist appointment. The years spent sick before I was diagnosed, the months spent being told it was either nothing or I could be dying.

In spite of the good, those experiences, which fade into memories/nightmares take their toll. Out of each I leak a bit of optimism/hope. I yearn for the innocence and naiveté I once had, that convinced me that people that did everything right didn’t end up chronically ill.

I never appreciated my health until I had to learn to live without it. And I wonder, who would I be today if I had been allowed to stay young a little bit longer? Who would I be without illness? Would I be better or worse or just different? But what’s the point in dwelling on a past that is over and a future that can never be? Pre-illness life is long gone. Living in spite of illness is what remains.

Yes, there is trauma, to be sure. But there is also love. Illness is a litmus test. It shows you who is willing to stand by, even when things are hard. And it shows you who isn’t. Who will call you lazy because they are too lazy to understand or empathize? Who will tell you that they’ll just throw a blanket over your head and walk out the door?

13 years later, I’m grateful that my illnesses are more stable than they once were, glad to have a medication regimen that works. I’m grateful for the friends I’ve made in the chronic illness community, and the opportunities that have come because of my chronic illnesses.

The road is long and the path is not linear. If chronic illness has taught me anything, it’s that you have to be adaptable, open to change, and ready for anything. Chronic illness can be all consuming, but it doesn’t protect you from other things happening. It may feel like a bubble, but it is certainly not a protective one.

Life is full of light and darkness, and life with chronic illness is no different. Maybe even those senses are heightened. The light is brighter and the darkness is darker.

There were probably times over the last 13 years when I genuinely didn’t feel positive about the future, didn’t want to celebrate another year with “a more onerous citizenship,” yearned to go back to how things were pre-illness. I guess that’s why, having now lived through the majority of a world-wide pandemic, the prospect of not returning to “normal,” what life was like before, doesn’t worry me. I’ve lived through the same thing in a far more personal way, where my world changed, but everyone and everything around me stayed the same.

I don’t write as often as I used to, the constant hum and buzz of medical appointments and ridiculous experiences have lessened. But every time I do sit down to write, it pours out of me. I am an expert on my own body and my own story. I have lived the last 13 years to the best of my ability, and in some ways, I feel like the story is just beginning. It has taken 13 years to learn to live with illness, and now I feel like I am having to learn and adapt in new ways. When something has been the focus for so long, how do you take a step back and look at it in the rearview mirror? How do you seamlessly combine something that will always be with you but is no longer front and center all the time? And how do you cope when this thing rears its ugly head again or threatens to put your life and dreams on hold (again)?

So, here’s to 13 years, and hopefully to another 13 multiplied by many, many more. I’m grateful for those of you who are still here with me. It has been a long journey, and I thank you for sharing the ups and downs, and accepting both the beauty and the burden that the journey has brought along the way.

“Anyone Who Wants A Vaccine Can Get A Vaccine”… Unless They Are Chronically Ill Or Disabled

As I explained in a previous post, My Job, Not My Illnesses, Got Me A COVID-19 Vaccine. And my getting the vaccine only solved half my problem. The other half of the problem is that my husband, who is unable to work remotely, and works in a very public-facing occupation, had yet to be vaccinated as of the end of March.

My husband has asthma and high blood pressure. While he’s 37, he’s definitely at higher risk of getting serious illness if he were to contract COVID-19. Not to mention, he lives with someone who is immune-compromised (even though that’s not something that anyone seems to be considering).

He was on no less than five different waiting lists for the vaccine including grocery stores with pharmacies, free-standing pharmacies, the county health department, and multiple hospital systems.

And guess what? Thanks to a local Vaccine Hunters Facebook Group and some chronically ill tenacity, his wife (me) got him an appointment at a CVS 30 minutes away from where we live.

(To date, my husband has only come up on one of the waitlists he was on.)

But the experience confirmed for me yet again that the system is 100% broken. Our local, state, and federal officials have told us that “anyone who wants a vaccine can get a vaccine,” but this simply isn’t the truth. It couldn’t be further from the truth, actually.

Maybe by 2022, everyone who wants a vaccine will be able to get one. Trust me, I’m grateful that vaccines are available and that I was able to get one. I’m grateful that Vaccine Hunter groups exist that use the virtual hive mind to share information. But at the end of the day, don’t our elected officials have some responsibility not only to keep us safe, but to follow through on the promises they make? (And no, I didn’t sleep through 2020, so I’m aware that these questions are basically rhetorical)

As I hear from many of my chronically ill friends around the country and in Canada, who are no closer to getting a vaccine than they were when vaccines weren’t available or have to battle to get one, I feel their frustration. I feel the frustration that those of us who are under the age requirements that were priority, but have significant health conditions, have been totally left behind. Those of us with chronic illnesses and disabilities are not only not a priority, but we are an afterthought.   

As has been the case throughout the pandemic, chronically ill and disabled people have been left behind. And even those who don’t think of themselves in those terms but who are high-risk for COVID-19, like my husband, are simply an afterthought. Even more of an afterthought is that he lives with someone who is immune-compromised.

The longer the pandemic drags on, the angrier I become at the level of risk our elected officials have been allowed to pile on us, with little care or concern for the consequences.  

If you haven’t been able to get a vaccine, I would strongly recommended looking on Facebook to see if there is a vaccine hunters group in your area. I would also suggest that as things open up – (today in Michigan everyone 16 years and up is eligible) – to the general public that it might be easier to secure a vaccine, even though it shouldn’t have been like this. Everyone that was eligible based on age and conditions should have been able to get vaccinated before it opened up to everyone.

I’m looking forward to the day when my husband is fully vaccinated and I’m also looking forward to the day when we can truly say that “anyone who wants a vaccine can get a vaccine”. 

But I’m no public health expert, right? I’m just a patient.

My Job, Not My Illnesses, Got Me A COVID-19 Vaccine

For those of us who live with illness, the pandemic has brought into relief for many what some of us recognize is a daily slog of inequality and missed opportunities. There have been many lessons that I’ve learned over the past year, and I’ll have another post about that. But the major issue right now, is getting vaccinated. And I’ve been vaccinated, not because of my illnesses, but because of my job.

And I think that says a lot about what’s wrong with this country. We prioritize people’s careers over everything, including their health. I have chronically ill friends who are too ill to work. Or don’t work in healthcare. And they are still waiting to get vaccinated, with no real date in sight for when that might happen. So, they, and even I, who has been vaccinated, continue standing vigil over our own lives while seemingly everyone else attempts to get “back to normal” at our expense.

I thought everyone that wanted a vaccine would be able to get one. And that’s clearly not the case. My local hospital system has had to cancel vaccine clinics for weeks because they simply don’t have the supply.

My husband, who can’t work remote at all and has been public facing throughout the pandemic, has asthma and high blood pressure. He is on a waiting list, but because he’s 37, we literally have no idea when his turn will happen. And no one has accounted for people that live with high-risk individuals. Honestly, he should have been vaccinated before me because that would have provided mutually beneficial protection.

And if it weren’t for my job, I’d be waiting just like him. And there’d be no end in sight. And there’s still this archaic notion that only older people can be high risk. That only old people get sick. Like our state and federal governments think that allowing those 65 and older covers a large swath of the population. Thankfully, both of our moms have finally been able to get vaccinations.

But this is not the Oprah show. “You get a shot, and you get a shot, and you get a shot.” “A round of shots for everyone!” I get the job thing in terms of vaccinating frontline people first. I also get the idea of vaccinating the elderly. But the fact is, once again as has happened so many times during this pandemic, chronically ill people are left behind. We know exactly where we stand in the food chain. And in a world where it’s eat or be eaten, chronically ill people are the main dish. We are put on the altar of sacrifice with barely a second thought.

The slipshod, piecemeal approach doesn’t work. By letting the states decide, the guidelines just don’t make sense. For example, according to the New York Times, “Type 1 Diabetes will qualify you for a Covid vaccine in Ohio, but not in Indiana.”[1]

So instead of letting states decide, how about the government offer some guidelines? Didn’t we learn anything from allowing states to shut down and open up indiscriminately? Oh wait…Texas, I’m looking at you here…We’re still making the same mistakes that helped everything get so messed up to begin with.

I’m hearte1ned to see that in some places, my chronically ill friends (the majority of whom are under the age of 65) are starting to get vaccinated. But this is the vaccine Hunger Games, and for chronically ill people, the odds aren’t in our favor (unless you have a job that qualifies you).

---

[1] https://www.nytimes.com/2021/03/09/us/covid-vaccine-eligible-preexisting-conditions.html?campaign_id=9&emc=edit_nn_20210309&instance_id=27904&nl=the-morning

Reflecting on Being a Graduate Student with a Chronic Illness/Disability

I am feeling triggered. Eight years after I graduated with a PhD from the University of Michigan, they are finally, finally starting to address the issue of graduate students with disabilities. While I was a student, I became vocal about experiences I, along with others, had as a result of identifying as a student with a chronic illness or disability.

I’ve linked the report, “Executive Summary of Report from Committee on Graduate Student Experiences with Disability Accommodations at the University of Michigan”, below:

https://rackham.umich.edu/downloads/grad-student-disability-accommodation-experiences-umich.pdf

The opening letter ends by saying they are considering a role for an advocate for graduate students with disabilities. This is exactly what’s needed. And I could do it.

The University of Michigan and others need to know they are AINO – this is my new term, maybe it will catch on – Accessible in Name Only. They opt to do the bare minimum, but what they don’t realize is that while they might not get sued, they won’t get cheered on either.

In my experience, it was hard. There was no support. I even had my dissertation chair tell me that if I went on to get a second master’s degree after the PhD, it would be viewed as a backward step. So what did I do? I did just that and I never told anyone on my committee. I told them I had to take some time and focus on my health and figure out what my next move would be. Eight years later, I haven’t spoken or heard from any of them. And it saddens me. My only crime was becoming chronically ill. Whether or not I could have made it as an academic sociologist, we’ll never know. But the reason I didn’t try is because I wasn’t encouraged, in fact, it was more the opposite. And as much as I am a fighter and the more someone tells me “no”, the more likely I am to try and prove them wrong, I didn’t have that kind of fight in me for myself.

I want to fight for chronically ill students in higher education. I want to go to battle for them like I hoped someone would have gone to battle for me. But it’s not about changing individual departments and disciplines, it’s about changing the institution of higher education. It’s about recognizing the unique issues that students with chronic illnesses and disabilities face, and finding ways to make sure they are successful in the academy in spite of that.

I wrote a letter to the Dean of Rackham graduate school to tell him how I felt about the report. I could have written the entire thing myself. I’m including it here in the hopes that someone from Rackham will reach out to me. My experience at U of M led me to Sarah Lawrence to study and focus on this issue specifically, so it’s time to take this journey full circle, back to where it started.

Dear Dean Solomon,

I am a 2007 graduate from LSA and a 2013 graduate from Rackham. During my first year of graduate school, I was diagnosed with multiple chronic illnesses. As you can imagine, this came as quite a shock to me. I was in the graduate school “bubble” and imagined that would be the main focus of the next few years of my life. Then life reared its ugly head and I became chronically ill. 

Amongst other things, I was told that I would never make it in academia and would never make tenure if I stayed on an academic track. I was also told that maybe I would be a "more empathetic sociologist" because I was sick. 

While in graduate school, I was as active as I could be in advocating for graduate students with chronic illnesses and disabilities. I still receive emails and today I read the Report from the Committee on Graduate Student Experience with Disability Accommodations at the University of Michigan in its entirety. To be honest, I could have written this report. It saddens me that in almost eight years, so little has changed and the same, if not more basic questions, are only now being answered. 

When I went to SSD, I was met with confusion. I was asking for accommodations that could potentially change often. If I was feeling good, I would not need them. If I was feeling poor, I might. I needed a contingency plan and no one was able to provide me with one. My livelihood and health insurance were tied to me being a graduate student. The prospect of becoming seriously ill and having all of that ripped away was incredibly distressing. SSD wasn’t equipped to handle that; in fact, I didn’t really find anyone that was equipped to handle my situation. When I expressed concern about my preliminary exam, which would put me in front of a computer for eight hours, the accommodation I was provided was that I could take half of it the day before the scheduled exam and the other half the following day. This was not ideal, but I had no other choice. I ended up in a freezing computer lab, and by the end of the first four hours, my joints were so stiff, I didn't know how I’d be able to walk home. That’s just one example of many struggles I faced throughout my six years of graduate school at U of M. 

I know that my situation is unique as I went from being a healthy undergraduate to being a chronically ill graduate student in the same department. But the change in faculty members’ associations with me were unmistakable and profoundly sad and disappointing. I know that being a 22 year old chronically ill graduate student was not how I had envisioned my graduate school years, but being shunned and looked down upon in the same department that awarded me the award for the best undergraduate honor's thesis, was almost too much to handle. I finished my PhD in six years and was one of the first in my cohort to graduate, knowing that if I took more time due to my illnesses, it would not have been looked at in a good light, even if my peers took longer just because.   

After completing my PhD, I went to Sarah Lawrence College and received a master’s degree in Health Advocacy, focusing on chronically ill students navigating and succeeding in higher education. I miss the University of Michigan. I miss the intellectual growth that I received. But no one empowered me to go the academic route and I was conditioned to believe that if “I couldn’t hack it, I shouldn’t be there.” 

Eight years later, the experiences I had as a chronically ill graduate student at the University of Michigan remain traumatic for me, and had a profound impact on what I have gone on to do (and not do). I do not think that this is a phenomenon unique to the University of Michigan, so please don’t take this email that way. I think this report is a good, albeit long delayed, first step. I know that many of us have watched as accommodations that we requested and were denied have been put into place for the masses due to the pandemic. We now know that what we were asking for is not so farfetched or impossible. 

I hope you or someone reads this, and I hope someone reaches out to me. The needs of chronically ill students are still unmet and I fear that by focusing on the issue solely from a “disability” lens will continue to marginalize and silence chronically ill students, many of whom may not consider themselves disabled. 

Sincerely (and in solidarity),

Leslie Rott Welsbacher, MA, MHA, PhD

My Experience with the COVID-19 Vaccine

First off, a Trigger warning. If you don’t want to read about vaccinations or see a picture of me getting one, then please skip this post.

I hemmed and hawed about getting the COVID-19 vaccine. Not so much because of the vaccine itself, but because I work in healthcare and was able to get it fairly early on. But I couldn’t help feel like there might be people needing it more than me. I didn’t read this New York Times article, If You’re Offered a Vaccine, Take It, until after I got my first vaccine.

I received my first dose of the COVID-19 vaccine on January 16, 2021 and my second dose on February 6, 2021. For those wondering, I got the Pfizer vaccine and I didn’t know I was getting it ahead of time. I do know people who got their first vaccine a week later at the same site I went to and they got the Moderna vaccine, so I think it’s pretty much based on availability and literally luck of the draw.

For the first shot, the site was drive up. It was pretty surreal getting a shot in the car, but it was super quick. For the second shot, the site was moved inside due to the winter weather. Even so, the queue moved quickly and seemed like a well-oiled machine. The first vaccine was given by a public health nurse and the second was given by a member of the army/national guard. I have to say, it was rather exciting to see public health in action.

I was a little nervous both times because I have had reactions (non-anaphylactic) to a few other vaccines in the past (HPV-II and pneumovax). However, I waited the prescribed 15 minutes after both times and was totally fine.  

After the first vaccine, I had a sore arm for three or four days. It wasn’t horrible, but was definitely noticeable. After the second, I started feeling “off” about six hours after receiving the vaccine. I had a stomachache for three days and a slight headache off and on for three days. My arm hurt too, for about the same amount as after the first one. I don’t think I ever ran a fever and it was nothing that knocked me out. I don’t know whether to celebrate the lack of side effects or worry about whether I got full immunity. But it’s not exactly something I can control.

I did contact my rheumatologist ahead of time and he did confirm that I should get the vaccine if I was able to get access to it. I’m not on biologics and I didn’t stop any of my medications ahead of time or afterwards.

Obviously, talk to your rheumatologist and/or other members of your healthcare team to make sure that there is nothing specific to your situation that disqualifies you from getting this or any other vaccine or whether there are any changes that need to be made to your medication regimen either before or after getting the vaccine.

I don’t think anyone really gets “excited” about getting a vaccine, but this felt different. Sure, I was worried about the side effects, but I was more worried about not getting the vaccine and being 100% vulnerable to COVID-19. It has been almost a year since I’ve been in the COVID holding pattern and I think it’s really important for everyone to understand that putting limitations on life hasn’t been easy. It’s exhausting to fear for my life every time I go to the grocery store.

So even though I’m vaccinated, will I be running around mask-less any time soon? Nope. And I won’t be going out to eat in a restaurant either. But that’s my preference. It’s not worth the risk to me. And while I can sleep a little easier knowing that if I were to get COVID, it will hopefully be manageable, I am going to do everything I can to, well, continue to avoid the plaque…like…the…plague.

Photo credit goes to my husband from the front seat. I could not take the picture myself, did not want to see that needle coming at me.

Good Riddance, 2020!

Oh what a year it has been. 

I plan to spend some time in the new year reflecting on COVID and everything the pandemic has taught me. But for now, wishing you and yours a healthy and happy holiday season and a better 2021 for us all. 

From my little family to yours.

Thanksgiving is Canceled

 

I haven’t written a lot during the pandemic. I guess because I’ve sort of felt that we’re all in the same boat, even though we’re not. We’re not because there are people who continue to flout responsibility. 

There are people who think the pandemic is a hoax. Still. Even after nearly 250,000 of our fellow Americans have died. A quarter of a million people. Let that sink in.

In Michigan, I thought we had turned a corner. In June, we were down to 100 cases a day. And then our Republican legislature decided that it would be a good idea to have our (Democratic) Governor’s powers struck down. And can you guess what happened? Our cases have gone up, astronomically. (See graphic below)

(From https://www.clickondetroit.com/topic/COVID-19_Data/) 

Last week we reported over 8,500 cases in one day. More than double our worst day during the first go around. I’m not trying to be overly political. It’s a fact. If you look at the graph and look at what happened after October 2, 2020, it’s pretty clear to see (and if you can’t tell, I added an arrow and a box for reference).

Even before our state came out with new restrictions, we made the difficult decision to cancel Thanksgiving. It was a difficult decision, even as a high risk individual, but it ultimately is not worth the risk to myself and to the rest of my family to hold a gathering. I don’t think I’d be able to live with myself if anything happened to anyone in my family because we held Thanksgiving despite the risks.

So I decided that I would make food and we would drop it off to everyone – outside. That way, we can all be fed. I even found a way to get Kosher Thanksgiving food delivered to my sister and her husband in Ohio.

And for those who are mad now, just wait. I guarantee the restrictions that are starting aren’t going to be enough. And you know what? I don’t care if you’re mad. You know why? Because I want to live through this, and I want my friends and family to live through this. I’ve been on near house arrest for 9 months and I’m not complaining. For those who feel that their freedom is being diminished? How would you feel if for 9 months, your entire existence has been diminished? Those who say that those of us who are chronically ill and disabled can just stay home while the rest can go on living their lives? If you can’t see past your own nose, that’s the problem. This isn’t about you. It’s about the collective, we, us. We need to be safe, not just for ourselves, but for everyone else. I would love, love, love to spend Thanksgiving with my family. But it’s just not safe.

This year sucks. That’s the only way to say it. While I do know someone who had COVID in the summer, I now know people who have family or friends that have died from it. Don’t believe me? Read this heartbreaking blog post from my friend Kelly. So the reality is, things are as bad as they are claiming. COVID seems to be getting closer and closer, no matter how hard we try and avoid it.

So yes, we have been and will continue to do hard things, to protect ourselves and our loved ones from COVID. It may fall disproportionately on those who are high risk than those who are healthy or opt to believe that COVID isn’t real or that it cannot possibly get them. I saw a meme that said “Zoomsgiving is better than ICU Christmas”. So do what you have to do to make not celebrating this year akin to celebrating. Know that making the choice now means more celebrations later.

And just remember, while Thanksgiving is canceled, love and family are not. Be grateful that we have technology that can connect us with our loved ones, no matter where in the world we (and they) are. We cancel this year so that next year, we are all healthy, safe, and alive so that we can gather together then. Because there are people, like my friend Kelly, who won’t be able to have Thanksgiving or any other holiday with their loved one again.

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.)

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.

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:

https://www.ghlf.org/fight-for-racial-justice-high-risk-for-coronavirus/

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:

http://chng.it/GLDBBb5MsH

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.