In the Meantime
Last updated: January 2023
My mom is going on vacation, and she asked me to stay at her cottage while she is away, to take care of her dog.
I told her I would be happy to do so, and this evening she texted me and told me she put fresh sheets on the bed and cleaned the house.
My first reaction was to ask her if she had made up the bed upstairs, and she said yes.
I asked her if it was alright for me to make up the bed downstairs because I wouldn’t be able to make it down the stairs in the morning.
It struck me all of a sudden how crazy that is. I am twenty-one, and I can’t make it down the stairs in the morning? It feels unreal to me.
I have a hard time understanding how it happened.
Are my RA challenges my fault?
The truth is, I feel that it is my fault that things have gotten so bad.
I know I am a difficult patient, as in I make things very difficult for my doctors.
I have refused many medications because I will lose my FAA medical certificate if I take them. That means I could no longer fly.
My doctors are continuously exasperated with me, because I am running my own agenda, and it seldom lines up with theirs. When I tell them I would rather die than have aviation taken away from me, they tell me that RA won't kill me; it will simply cripple me to the extent that I can’t move.
I like to joke that as I work in hospital pharmacy, surely I know how to end my misery if it got to that point.
They don’t find this very funny, and honestly, neither do I.
What do you do in situations like this? Is your functionality more important than the things you love the most, that make you who you are? Am I going to regret making the decisions I've made when I am older? I really don’t know.
Should I disclose RA status?
I never tell anyone I have RA. My family are the only people that know.
I have always suffered in silence, and I have made up stories to explain my various surgeries at work.
I feel like I am embracing my disease if I tell people.
I am also scared to death of people's assumptions if they find out.
Once at the ED, after an accident unrelated to my RA, my room was right by the nurses' station.
I heard one nurse say to another, “oh that poor young girl has RA.”
The other nurse said, “well, I have a positive ANA and my doctor told me I have lupus, these diseases aren't really real, the doctors tell everyone they have them nowadays.”
I felt sick to my stomach overhearing this conversation. Is it a good thing to tell people? Is it my obligation to educate people?
I really don’t want to though, I have no interest in talking to anyone about it.
This is not to say that I am miserable and everything is bad. Much of my life is amazing, and my family is the absolute best! These are just some of the things that have been on my mind lately. What's been on yours?
Have you struggled to afford your RA medications?