MS Speaks

I waited to get the COVID--19 vaccine until I could get it my way. I thought I could treat myself to the luxury of waiting since I'm in contact with so few people and am being careful about mask-wearing, social distancing, and sanitizing. I probably see fewer people typically than 99% of the US population. Even some of my bedbound neighbors have far more people around them since they have caregivers coming in regularly.

In fact, there have been 4 confirmed cases of COVID in this building so far, and at least 2 of them have been caught from a caregiver.

I wanted to be able to get to/from a vaccine site easily, preferably finding a location close to home and one that I already knew about. I need to know where the washroom is and whether I need a special code to get into the washroom. Age or MS has taken its toll on my vision and hearing, and so being in unfamiliar surroundings where it's important to see and hear is profoundly unsettling.

One way would have been to find someone to stay with me at all times during the process. But that seemed like entirely too much to ask of anyone I know. My son is overloaded to put it mildly.  Such a person would have needed to handle my wheelchair in the vehicle, possibly dismantle it and hoist it into and out of the vehicle--a process that daunts many people, even taxi drivers, and I often end up doing it myself. I probably couldn't do that in hot weather at all.

And such a person might have to go through this process twice, for the two shots, and might have to wait with me each time for hours. I don't know anyone I would have asked to give up that much time and energy. I thought seriously about paying someone, and all along that has been an option, particularly since my next-door neighbor has worked as a caregiver for over 20 years and offered.  She's also overloaded as she is very much in demand. In her 70s, she still works a very full schedule, with many people depending on her.

I didn't see how she could give up a day or maybe two days to work for me.

And I decided to hold out for the J&J vaccine simply because it's one shot--and one trip. For the last 30 years I've relied on a paratransit van for almost all transportation, and it's an impersonal way to travel. I have been forgotten about and left to cool my heels for many hours more times than I care to think about. Eventually the system straightens out its schedule but sometimes it means many hours of waiting. I'm getting on in years and have MS. Waiting isn't as easy for me now, even though I'm waiting in a wheelchair.I need access to bathrooms, and how can I get to a bathroom when I'm required to wait where the driver can see me because the drivers aren't allowed to get out of their vans and go looking for people? I've seen some drivers get out and go looking anyway, but not all will be that thoughtful. Or have that much time to spare.

Most of the earlier vaccine situations were in vast, crowded settings (a convention center, an airport). I didn't see putting myself through that if I could avoid it.

The J&J vaccine is less effective than the other two currently in use in the US but I was willing to sacrifice effectiveness just for the sake of sparing myself another trip. Maybe I'm being foolish but that's what I did.

I got the J&J vaccine yesterday, at last, because one of the medical complexes that dominate the medical scene here notified me that their pharmacy was giving it. I called and asked about it and was told to come in and wait between 11 and 4 because that was their least busy time.

I did that. I hadn't ever been in that particular building but had been in another building (often) in that hospital complex and so felt almost at home there. I was treated well and the shot came my way after waiting only about half an hour while the pharmacy took care of a line of waiting customers, each one receiving a neat little plastic bag with bottles of pills or other rx's inside. The pharmacy's shelves were lined with rows and rows of these plastic bags. 

The shot was quite painful, more so than the annual flu shot, but the pain didn't last long at all. The next day I still have a slightly sore arm but otherwise no side effects. I'm really glad that I finally was able to get the vaccine--and thought others here might be interested in knowing one person's experience with it.

Going anywhere can be difficult, and going to places that now have codes you have to know before you can get into a washroom just makes everything even more difficult. They keep changing the codes, and sometimes I have to travel quite a distance just to find out what the new code is, then travel back to the washroom with it.

Navigating in a wheelchair can be tiring on the arms. Even with nice slick floors.

So trips for me aren't the easiest thing. I dread the stranded/abandoned feeling I get when there's a foul-up and a ride doesn't show up. There have been times when I've need to go to an appointment, waited my half hour minimum for the ride, called and found out that they made a mistake and it would be another half hour before they could send a ride, which would make me entirely too late for the appointment, and so I had to cancel the appointment, reschedule it and reschedule rides for it. Cancelling appointments is not a way to endear oneself to one's medical providers. Most of them can charge a  penalty but they've been nice to me so far and not done that.


This overly long post is just my way of letting off steam about a situation that some with MS face.