When it comes to autoimmune diseases there are so many unknowns. I have cold agglutinin disease (CAD), a complicated rare disease to diagnose and treat. While I wait for a cure, I must live life and avoid, as best I can, getting sick and or cold.
Avoiding the cold is challenging, even though it would not seem so. It has been so warm that my only concern has been air conditioning. Aside from that, my major concern right now is avoiding getting sick. Catching anything can mean the difference between a decent hemoglobin level (HGB)—mine is in the low 10s—and a drastically lower one. When it drops down to the lower levels, the sickness you feel is like nothing you ever felt. It is like the flu on steroids. It is something I do my best to avoid at all costs.
However, we are in different times. We seem to have a decent hold on COVID, at least for now. But we do not know how things will change when schools are back in session and when the colder months come. For me, it could be the perfect storm—marrying the cold with sickness. The predictions are that we will hit a new wave but, like anything else with this pandemic, there is truly no way to know.
COVID aside, we have a new concern: monkeypox. As bizarre as it seems, it is real and spreading across the world.
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Luckily, there are vaccines for both viruses. At the height of the pandemic, I did receive my vaccines. What I did not realize at the time was that people with autoimmune diseases should not have vaccines that contain live viruses. Here in the US, we only offered mRNA vaccines, which do not contain the live virus. In hindsight, I am thankful for this.
I learned it is dangerous for someone with autoimmune diseases to have live inoculations. CAD makes our immune systems overreact and destroy our red blood cells. Adding a live virus is taxing on an already compromised immune system. You could potentially get a dangerous infection. On top of this, medications used to help with CAD also lower your immune system.
Here in the US, we have had rare viruses pop up here and there, but they never raised much of a concern. After the global pandemic, we are all hyperconcerned about any virus, even if it is just a couple of cases across the country.
We have monkeypox here in New York scattered across the state, and because of this, our counties are armed with the monkeypox vaccine. I work on the road and meet many people every day across the state. The big push here is if you get exposed, get the vaccine. I cannot. The available vaccines contain a live poxvirus, called vaccinia virus.
This leaves me without options if the monkeypox were to spread into a global pandemic. Luckily, in the studies I have read, it does not look like it will get any further than outbreak pockets here and there. It does not change the fact that I would not be able to do anything to protect myself outside of continuing the procedures I still follow from COVID.
As annoying as it is to wear a mask in public, I still do. To be honest, it has helped stave off seasonal allergies. I continue to wear a surgical glove when I pump gas or use the ATM. I no longer shake hands and I keep my distance in public. Just like everyone else, I am tired of following these procedures, but it has become a necessary way of life for me. When you have CAD or any autoimmune disease, it is necessary to protect yourself, especially since we have fewer options.