I’ve been threatening to do this for a long time. It’s a book in the making. Please feel free to send me a message. If you have stories that you would like to share (anonymously is fine… just having more stories than my own would probably help) that would be great. If you have ideas on how to live your life every day with RA that would be awesome too. What helps you get through? What are your tricks for getting by when you are having one of THOSE days?
This is my work in progress. I will publish it (electronically) after I get through the edits.
I AM NOT A DOCTOR, I AM NOT AN EXPERT, I do not even play one on TV. I’m just me and all I will ever be is just me. This is by no means meant to be medical advice. It’s more just how I get by every day and ideas on how maybe you can adapt my every day to fit yours.
Sometimes I wonder what would actually have happened if I HAD been born in a cream can and that, if they knew now what they didn’t know then, they had opted to not pry off the lid. I wasn’t born so, however (it goes without saying) and as it turned out they were actually stuck with me even when they did know better.
I learned early that doctors were not people that people like me sought out. We are of tougher stuff. We suck it up princess and we only dane to go to doctors or emergency rooms if we were nearly struck dead and even appendicitis wasn’t enough to get me much more than growled at until two weeks after I started my adventure on attention seeking and I ended up under the knife (as indeed it was knife at the time) and it actually turned out that my attention seeking appendix was four inches long and infected, nearly ready to burst.
This was my childhood and adolescence and it became the mantra that played in my head every day of my life. And so it went, and so it goes.
Suffice it to say that when you have RA, you have RA every day. It’s not a sometimes thing. Even when you are in remission, it is there. It’s there lurking, watching, always watching and waiting for an opportunity to flare. And when it flares, you remember why you were happy it was hiding.
So given that it is there always, and that it is your every day companion in one form or another, you have to find ways to live with your new constant companion. This book is a work of heart, it has been lurking there in the back of my mind and I have been determined to write it, one of these days when I get the time and the ambition and the fortitude. I will never have the time. I have come to the conclusion that that is just not going to happen so I may as well suck it up princess and just apply my butt to my chair and git-er-done. Now, If I can just get my people to understand that this is something that I need to do so they will give me the latitude and solitude to work on it.
So here I am, alone in the dark, just me and my keyboard. I’ve picked the most intimidating time of year to start this. It is NaNoWriMo and, while this is by no means a novel at this point, it is writing and if I can hit my target numbers, it will be a perfectly viable piece of work come December when I can sit down and do some editing (and proof reading). For NaNoWriMo, the importance is in the numbers and getting the right amount of words on a page in a single month. For me, the importance is getting my thoughts, my ideas, and more to the point my contemplation on RA down on paper to share with you dear reader.
So… to begin… my story.
I grew up on a farm in western PA. It wasn’t a big farm but it was a great place to grow up. Room to run, places to hide. It was an education in the making. I grew up in a family that was very reluctant to go to doctors and I grew up with the knowledge that I wasn’t likely to go unless I was dreadfully sick. It was a given that I was probably just an attention seeking kid and if my fears weren’t fed they would go away. I wasn’t. So I grew up stoic and I basically sucked it up unless I really thought I was going to die.
This means that, decades later, when I started to have the first symptoms of RA, I remained stoic and shook it off the best I could. I chalked it up to all kinds of things that it wasn’t. Too little sleep. Too much sleep. Stress at work. Too little exercise. Too much exercise. A touch of the flu. You name it, I blamed it on something.
I didn’t go to the doctor when I would ache unbearably from riding too long in the car. I didn’t go to the doctor when we were at Disney World and I had to limp (that’s a lie, I had to hobble and pray I would make it) from the parking lot to the hotel room in the middle of the afternoon with my feet so swollen that I had to loosen my Tevas so I didn’t cut off the circulation in my feet. I didn’t go to the doctor when I spent two weeks with my right knee swollen the size of a honey dew melon and the pain so bad that I couldn’t walk (again with the hobbling) and I had to wear the biggest pair of sweat pants I owned to keep the leg from being too tight and my not being able to pull them on and off. It wasn’t a pretty sight.
I finally went to the doctor when I started getting tender bumps on my hands. Come to find out later that they are called nodules and that I was one of the ‘lucky’ 40% of RA patients that get them. I thought it was a cyst. I wanted my son to smack my hand with a heavy book to try to break the cyst. He said he would if I really wanted him to, but thought it wasn’t such a great idea. He thought I should go to the doctor so she could lance it and I could get back to living my life thee way I was.
It wasn’t a cyst.
One look told me she was concerned. She sent me for blood work.
Three days later, as I was sitting at my desk at work, I got the call from her office. I have RA and I need to get in touch with a rheumatologist immediately. She gave me the name of an amazing doctor and I made the appointment.
Then I google Rheumatoid Arthritis. BIG mistake. Turns out that RA was what my great great (great?) aunt had that turned her fingers into modern art and made her hands painfully complicated.
I completely and totally fell apart..
Turns out I have RA just past the moderately sever point. When I went to the Rheumatologist, I had 37 involved joints. She told me I had had active RA for at least 3 years before I came to see her and it was going to be a forever adventure to get me to the point where I could say I was in even a semblance of remission. The x-rays showed erosion in my fingers, toes, knees and ankles.
She put me on prednisone to try to get anything under control. She put me on methotrexate to fight my out of control immune system. She talked and she listened.
This couldn’t be happening. It couldn’t be real. I was signed up for my first half marathon in just three months. I didn’t have TIME for RA to be in my life.
Little did I know then that RA is the one thing in my life that I HAVE to make time for because it is a very demanding companion and if I don’t make time for it, it makes time for me.
So, why another RA book? There have been several coming out the last few years that are true tails from the trials and tribulations. I’ve read most of them. I have enjoyed a few of them. Most of them are really mostly “this is my story” kind of books, not really the navigational kind of book that kind of leads you to hints and tips for what actually happens in a day and ways to deal with it, cope with the results and understand what might be next.
So here I am, trying to put my hand to what comes next and a care and feeding kind of discussion on what might be coming your way. I’m not an expert. Whatever I say needs to be taken as it is meant to be, from the trenches, not as an expert in any way shape or form. I’m not an expert. I’m not a doctor. I can’t give you (and won’t give you) advice on anything other than just getting through your every day in a way that will maybe keep you a little more sane and a little less in pain.
I guess a good place to start is with what is RA. If you have it, you probably fully understand what it is. If you don’t, but love someone who does or just want to understand better, this is a good place to start.
But Why Me
I guess it more a question of why not me, really, than why me. I have been thinking a log about purposes in life and what I did to deserve this. I know it sounds very fatalistic to think that way if you look at the sentence to be just the literal meaning. And I guess to some extent I mean it that way too.
What did I do to end up feeling this way so much of the time? Why, when I was just really starting to get reasonably fit did all hell break lose in my body and everything start to hurt. It’s not fair. And it isn’t fair.