Within this blog I share my thoughts and experiences, as well as helpful links. Your health and journey are completely different than my own, so please confer with your health professional for recommendations relating to your own health. Links with helpful information are clickable and open in a new tab. Thank you for reading, please like, comment, and subscribe. 😊🙏🏼🧡
It’s almost Summertime. We celebrated my daughter’s eighth birthday and we are making plans. We purchased tickets to fly to Utah next month. We get to see family again, make plans, and I get to return back to California, to my husband and my MS Specialist, and yes, I am equally happy about both.
This post will share my my experience receiving the vaccine, as well as my feelings going forward, my hesitations and my hopefulness.
I have received both doses of the Pfizer vaccine. I was happy to get the shot, but cautious. I emailed my MS Nurse and talked to my MS Specialist over a teledoc appointment to see if my timing was right. I had received my Ocrevus infusion, a B cell depleting medication that prevents MS relapses, at the end of February.
My specialist said since that I was eight weeks from getting my last infusion, it was fine for me to get the vaccination as soon as it was available to me. After a little drama when the J&J vaccine was paused and my appointment canceled, I was blessed to be able to get the vaccine I really wanted, the Pfizer vaccine. My specialist had advised me to get the vaccine that was available to me, but I really wanted the vaccine with the highest data of prevention. I knew that people on B Cell depleting medication, like Ocrevus, may have an attenuated, lessened, immune response to the vaccine, so I reasoned that I wanted the vaccine with the highest efficacy in clinical trials. I share some resources on vaccine timing in a previous blog post.
So anyway, I received two doses of the Pfizer vaccine. I had symptomatic responses to both of the shots; malaise, chills, body aches, a low grade fever, and a horrible splitting headache (second vaccine.) The worst of the symptoms resolved in 48 hours, but I felt very fatigued, and a bit of an increase in my other MS symptoms for the next four to six days. The second vaccine symptoms were a little worse than the first vaccine. However, after recovery I returned to my normal MSy self with no lingering pseudo exacerbations or worsening MS symptoms. My symptoms fluctuate day to day anyway, so the whole experience wasn’t too bad.
Now I’m through it and ready to take next steps. My friends and family members who don’t have MS are starting to get back to life as normal. Meanwhile, I’m questioning what the new normal is for me, a person who may have had a limited response to the vaccine, because I received it eight weeks after my Ocrevus infusion. Plus, I have two small children. They have been absolutely wonderful, understanding, and resilient throughout this pandemic. They left their home to come to North Carolina, have new experiences with me, like hiking through woods and finding new places. They have been homeschooling this past year with my parents, my brother, and as their instructors. I want to let them return back to life as they used to know it. I would love to send them back to school but they are not eligible to get the vaccine yet, and I really don’t know yet how protected from the Corona virus I am. My MS Specialist told me that the vaccine should still prevent me from going to the hospital should I get the Coronavirus, but other than that, she really couldn’t say because she didn’t have data to refer to.
Two days ago, on my daughter’s 8th birthday, I was overjoyed to see Dr. Brandon Beaber release a vlog detailing clinical data in Israel that has been tracking people in real time after receiving the Covid-19 vaccination. They also have data on immunocompromised individuals. The data doesn’t tell us everything, because the group includes a way variety of patients on different kinds of immunotherapy or with a wide variety of immunocompromising conditions.
Still, I am comforted by the data, because this is the first real world, non clinical trial controlled data out there, in people who are immunocompromised.
Another blog post I found extremely helpful comes from Bart’s MS Blog. It was written by an MS Patient who interviewed five different neuroligists about the recommendations about moving forward after Lockdown: Life after Lockdown.
So I’m allowing myself certain privileges that I turned down while unvaccinated. We went to my brother’s house in Charlotte so my kids could play with their cousins and celebrate her 8th bday. My mother and father-in-law, Dadi and Dada, came to celebrate my daughter’s birthday with us a few days later. We are seeing family and planning to see more family. We are going to fly to Utah, to meet with other vaccinated family members. There is some concern, because my cousins also have kids. However, as coronavirus cases drop, there is also less risk that their children could contract it and pass it on. Basically, I’m monitoring coronavirus rates in the areas I visit, and planning accordingly, measuring the risks, and the potential rewards of seeing our family members. (On my flight, I’m planning to bring hand sanitizer and wear the required masks, plus a face shield for my children and I.)
Yet the question still persists. What do I do with my children this school year? It makes me feel sad, that they have missed out on a school they enjoyed attending to. I was unhappy with the regulations the school had in place, not requiring children in grades earlier than 3rd grade to wear masks. I don’t hold it against the school, different people have different priorities, but I recognized the need to be careful. That was the reason we came to North Carolina to homeschool.
Now that the pandemic is winding down, in the United States, though not yet throughout the world, many kids are planning to return back to school as normal. Yet I am still enrolling my children in public online school. I go back and forth and question my decision, but it seems it will still be the best option for us, until they can receive their covid 19 vaccinations. I want my kids to return back to normal, desperately, and if I had a higher than 90 percent protection from the virus, I would send them back to school.
However, I walk a tightrope with small gains, as I still recover from my last MS relapse in 2018. I guard my health closely, because I already have tingling and numbish feelings throughout my body, head, face, arms, hands, legs and feet. I just don’t want to risk a relapse or anymore neurological symptoms and covid19 infections certainly carry a risk of long term neurological symptoms.
So here’s where I am, trying to give myself a little more freedom, my children a little more freedom, while social distancing and wearing masks in some situations with crowds or high contact risk situations.
I focus on the small gains. Yesterday I went to a jam session with my brother and sat down and ate in an indoor setting, after I checked the covid numbers in our county. There has been one case average in the last seven days.
What do you feel safe doing, now that covid19 numbers are dropping? How do you feel going forward? I would love if you share in the comment section. I love hearing from you, and your thoughts. It helps me more than you guys know.
May God be with you till we meet again.