By Sandy Hanebrink, OTR/L, CLP, FAOTA
Diagnosed with TM since 1987
Executive Director, Touch the Future Inc.
Many individuals out there are struggling with the thought of getting or not getting the COVID-19 vaccine. Others are panicking because they are not in the cohort allowed to get the vaccine. There is much distrust on what is fact and what is not. In the disability community this is amplified, but not as much as it is in our rare neuroimmune community, where much conflicting information on vaccines in general abounds. I am right there with you. There just is not that much data out there for our community on anything and especially on the COVID-19 vaccines. So, what made me decide to finally schedule getting the vaccine?
First, Dr. Greenberg put out a few SRNA videos with important and science-based information that expanded as we learned more about this virus. I was already thinking no way am I getting this shot and no way would my doctors even let me. You see, I don’t just have transverse myelitis, but a very complex medical history including allergic reactions to other vaccines, medications, and other things. So, I was pretty much in the not ever going to happen camp. But as information became more available and Dr. Greenberg validated this information, the medical professional and advocate in me just had to know more. Then the shift to maybe I should get this came back into play. I began talking to my primary care doctors again and seeing if they had changed their minds too. With new data, we all began to shift our opinions.
I began researching the studies that Pfizer and Moderna were doing in the US and UK. I reached out to friends at CDC to verify interpretations. I sent information to my physicians for feedback. I looked at the science and weighed the risks. Because of my allergies, I reached out myself and got my pharmacist to reach out to Pfizer and Moderna for a complete list of ingredients, and then we cross referenced these ingredients with other medications I had reacted to to see if anything was there to cause concern. Nothing popped up. I then reviewed the little data known in Dr. Michael Levy’s Rare Neuroimmune Disorder and COVID Vaccine Tracking Survey and saw there really is no difference on how individuals from our community are responding than anyone else. There were zero neurological changes or exacerbations. After talking with my primary doctors, I met with my neurologist to talk about her recommendations and timing the vaccines with my Rituximab infusions. The timing was perfect as I was a little over a month out from my next infusion and as an occupational therapist, I could schedule under the 1A tier and not have to wait for 1C to be authorized to get the vaccine. I scheduled my first vaccine and adjusted my Rituximab infusion to be 3-4 weeks past the second vaccine dose to allow the vaccine antibodies to develop. Thankfully, this was only one week later than I was already scheduled.
We had a plan in place that my medical team and, more importantly, that I was comfortable with executing. I got my first Pfizer shot. I did take a Benadryl per my doctors’ recommendations 30 minutes prior to my appointment just in case for allergies. I had no immediate reaction. The next day I had some soreness at the injection site and, the next evening, I had a mild temperature for about an hour that Tylenol resolved. I did not feel bad, and I had no neurological changes. And to make sure everyone else in our community has the data to make the decision for themselves, I completed Dr. Levy’s tracking survey. I just had my second dose on Feb 1st. Like the first dose, I had soreness the next day but this time it was a bit red. I definitely felt fatigue and some dizziness but was fine the next day. The only noticeable symptoms were the injection site inflammation and soreness. If anything changes, I will share with the community and do the tracking to ensure data is available. I am also scheduled for an antibodies test to see how my system responds in about a month.
I am not suggesting everyone go to the extreme I did before you choose whether to get the vaccine. I think what is important is that you are comfortable with your decision, and that you and your doctors make the decision together. I also think it is a great idea to listen to the SRNA videos and podcasts to get the science and facts as they relate to the vaccine and our community.
For me, I have pretty much been home since March 2020. I have changed to working virtually. I only go out for medical appointments that must be in person. The world as I knew it stopped. During the summer and early fall, I went at off times, 3 times, to an outside dining restaurant, but nothing since. There are just too many people not wearing masks, getting sick and dying to even consider it. I went for a car ride to see fall foliage and we watched college football outside, 8 feet apart with patio heaters and a fire pit blazing, with masks on with only two other people who we knew were being extra cautious. My bubble has been my Mom and my roommate, Dorothy. Dorothy has done all our running around for things not delivered. She is a physical therapist, and she changes in the garage, does laundry and showers before being around us. A life of extra cautious quarantine. Deciding to get the vaccine gave me back control. It put a plan in place that gave me hope for some normalcy again. It gave me the possibility that if I got COVID-19, I had a shot at surviving it. It offered the chance to get back out and do good for others again. I could be more than a voice on the phone or face on Zoom. I could work with clients and pound on doors advocating for accessibility and healthcare again, masked face to masked face. It gave me the feeling I was once again in control of my life. I knew based on science, that the risk of adverse reactions was so much less than if I got the virus. I knew that any reaction I might have could be treated, and that my doctors and Dr. Greenberg all felt the vaccine was safe.
So, this is my story. I got my first shot, and I am fine. I got my second shot few days ago, and I am fine, and I believe I will continue to be fine. I hope it helps you decide what is right for you. I hope you get the vaccine and get control of your lives again. I will keep you posted on my vaccine journey. Be well and be safe. We are in this together.