“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).

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[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

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.

Not Out Of The Woods Yet

I started physical therapy again last week.  Unfortunately, my old PT moved to a satellite office, so I have to see someone new.  And as of right now, my insurance only approved a consultation visit.

I think this must be GI purgatory.  This is the place where they send people whose bowels are possessed by the devil. 

Apparently I have a sluggish colon, plus some of the muscles at the end of things are just frozen.  They’ve stopped working.  Explains why taking a dump has become akin to an Olympic sport.  Seriously, it’s freaking exhausting to be tethered to a toilet, not knowing when you’re going to shoot blanks, or actually drop some kids in the pool.

I’m sorry for being so blunt.  Actually, I’m not.  Not really one bit.  I pride myself on presenting my illness experience in the most truthful, if not funny, way.  And sometimes, you have to laugh. 

Forget Moves Like Jagger.  I’ve got moves like Elvis.  It’s all in the pelvis.  Ha, ha, ha, ha, ha.

So anyway, back to purgatory I go.

And it’s great to get a rectal exam from not one, but two doctors.  The joys of this place are just unending, let me tell you.

Hopefully we can avoid the word throw-up that included bible verses from a religion that I don’t belong to. 

So the new PT is asking me about health issues.  And she says, Aside from lupus and RA, you are in perfect health?  Is that a sick (pun intended) joke?  Is she mocking me?  Me?  Perfect health?  Ship shape?  Mint condition?

I don’t think so.

This body, with its freezing joints, and the possibility that anything I come into contact with could make my body go crazy?  Is that the definition of perfect health?  I certainly hope not. 

Given the fact that I’m 26, but I feel like I’m 80 years old part of the time would suggest to me that my body has seen younger, better days. 

Things could be worse, for sure.  But they could definitely be better.

Then she tells me that my posture is bad and that because I am short and my legs are longer than my torso, I’m basically pre-destined to have a difficult time doing my business. 

What the heck is up with these PT people?  They are so tactless, it’s unbelievable.  And don’t you just love it when healthcare professionals start nitpicking and telling you you’ve got more wrong with you than you previously thought (in not necessarily a medical way)?

So I’m annoyed with the whole PT experience.

And I’m not being a good patient, and am avoiding the flu shot like the plague.

After the whole pneumovax debacle, you can say that I’ve developed a slight aversion to shots.  While getting vaccinated may help me in the long run, in the short run there is a lot of anxiety.  Will the shot be given correctly?  Will I have a reaction to the shot?  Am I better off not getting the shot at all?  I will probably just wait until my rheumatologist appointment that’s in the middle of November and get it then.

But even then, I’ll do it with my eyes peeled.      

If you go to the Lupus Foundation’s website, go to the Research tab, and then select Lupus Research Summaries, there is a flu link.  The two summaries basically suggest that people with lupus who are immune-suppressed may not gain full immunity from one flu vaccination, and that getting two might offer better protection.

I really hope that’s not the case, because for me, this is going to be a one shot deal.  Literally. 

As the weather changes to cold and gray, there is a strong sense of foreboding.  

I’m ever vigilant.  I have to be.  In 2009, I was hospitalized in October.  In 2010, I was hospitalized in November.   Are you sensing a pattern here?  And not a very good one.  This year I probably won’t take a sigh of relief, until, um, I don’t know, spring?

So please, just let me get through the rest of 2011 without any health crises.

Is that so much to ask?

As winter creeps up on us, I feel a weight bearing down on my shoulders.  

The cold has increased my pain and stiffness to a significant degree. 

Clearly, I’m not out of the woods yet.