If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?
I would say “Three and Two Counts.” That would be my baseball analogy. That you’re up there, you have a three and two count, you have 50/50. So, you know, things are stacked in one way 50% you know, the condition 50% good. So that’s what I would do, three and two count would be-
I will name the book “Pain In The Neck,” because it’s quite literally. The chapter that I’m on right now is “Here We Go Again,” because it’s a daily battle. So, that’s what I will name the book.
The book would be called “Out of a Wheelchair,” and the chapter I’m on now is titled “Maintaining Mobility and Working Towards Fitness.”
I think it’s probably the same thing that people say to me. “You Don’t Look Sick and My Response is You Don’t Look Stupid.” I think that’s a great title for a book and the chapter that I’m in right now, “Reflection.” I think that’s where I’m at is “Reflection.”
If I were writing a book about living with this condition, I would call it “Overcoming.” And I would be in the middle of the book, in the middle chapter, because I’ve come a long way and I feel like I have a long ways to go yet.
The book would be called “Aging and Its Effects.” I would talk about the pain and how I arrived at it and my journey with my multiple sclerosis disease, turning into this horrible pain of arthritis. The chapter would be “I’m in Pain Right Now.”
I think, at this point, my chapter would be to “Not Let This Define Me.” I have issues that I have to deal with regarding my RA on a daily basis. However, it doesn’t mean that I can no longer be a part of my family and my friends’ lives. I still am a person. I still have feelings. I still want to enjoy these things with my people. And that, if this is going to define me, then I’m going to say, “I’m going to fight like a girl.”
The title of my book would be “Don’t Drop the Ball” mainly because I drop everything. That’s the phase I’m in right now. My hands sometimes just do not want to work. So, the chapter I’m in right now would be “Think Fast” because basically the second it leaves the hand, I’m jumping to move my feet so they don’t get smooshed. So “Don’t Drop the Ball” and “Think Fast.”
I live near the mountains, so I would say I would call this “The Journey to the Summit,” the summit of the mountain being like having a great life, and living the best life you can. You know, when you’re climbing and hiking there are parts of it where you’re like, “I feel amazing. I’m killing this hike, I’m doing it.” And you feel great. Then there are some parts of the hike where you’re down, you’re tired, you’re hungry, you’re not sure if you’re going to make it to the top. I think that that very much symbolizes arthritis, because there are days when I forget I have it, and I do everything I’ve ever wanted. And then there are days, or weeks, that go by where you’re just debilitated. You can’t move, you can’t do what you want to be, and you’re wondering if it’s always going to be like that. So, I think it is an up and down, but at the end of the day, when you get to the top at the end of your great life, you’ll realize that you made it, you could do it, and you had a great journey. And so, I think that that’s kind of what I would call it. I would say the chapter I’m in now is like “A Restart of the Ascent” because I’m still going up, but the last two years have been really tough. I’ve had a lot of RA flares, I couldn’t get it under control. I had to take a ton of Prednisone, had some other medical issues come into it, and so it’s just been a really rough two to two-and-a-half years. And so, I finally just found this Humira that’s working for me. I’m finally off Prednisone, which is amazing, so I feel like I’m starting to feel more normal and forget that I have arthritis every day. So, I’m starting that climb back up, where I’m feeling great, and I’ve got this. And I’m going to crush it.
This is a good question too. If my experience living with this condition were a book, what would the title be and why? The title would probably be “Just Keep Fighting,” “Just Keep Going.” I’m not sure. Just keep fighting and don’t stop until people listen, people believe you. Things get better. I’d probably name the chapter that I’m in right now probably something along the lines of “Happiness and Management,” because I’m managing my condition, I’m still dealing with symptoms that are impacting my daily life, but it’s manageable and overall I’m happy, life is good. I mean, apart from the global pandemic going on, which is absolutely terrifying to someone like me who has chronic health issues. Now overall I’m happy. We’re trying to stay safe. It’s a challenge though. That’s probably what I’d call the chapter, is “Happiness and Management,” and the title of my book would be “Just Keep Fighting: Living with Chronic Health Issues as a Teen and Young Adult Into Adulthood.” There we go. That’s a good one.
I would call it “My RA Journey: The Inside Scoop.” And the chapter I’m in now is, “Always Put Your Health First.”
I guess I would call the book “Forever Sick.” And the chapter I would be in right now would be called “Trying to Find My Way.” Because I’m trying to deal with this in a better way.
I’m not sure what the title would be. Maybe, “Every Day is Not the Same.” And as far as what chapter I’m in right now is probably just, I would name it “Coasting,” like “Coasting on the Water.” I’m in a place where I’m getting treatment, it works okay. I am able to do some things, but I’m still always tired, always in pain. But I’m in a fairly calm part of my world right now.
My book would be called “I’m Still Here.” And the chapter that I’m in currently would be, “Really, You’re Still Here?”
I would name my book… The title of the book would be “Fatigue Infinity.” And the chapter I’m in is “Dragged Down to the Abyss.”
Oh God. “A Body at War,” since my body is at war with itself and I’m not sure. “Chapter Two: Trying to Get Adequate Pain Management and Adequate Meds.” I don’t know.