The Prednisone withdrawal that I’ve been dealing with over the past few months has been one of the hardest and most frightening things I’ve ever had to deal with. (Who would have know that ‘non addictive’ does *not* mean that you still can’t experience extreme withdrawal symptoms?)
And while I’m not yet at the finish line (but am oh-so-close, with my most recent taper down to 5 mg/day from a previous high of 25 mg/day), I think that things are finally back under control.
Just yesterday, a good friend–someone who inspired me each time we met over the past few months, and who always knew exactly what I was going through–pointed out that this was the first time she had seen me when I wasn’t trembling and when I wasn’t sweating.
She was right.
Now is the first time in a long time, when I can honestly say that I feel healthy. Am I saying I no longer have RA; that I’ve been cured? Of course not. Am I saying that I no longer experience indescribable pain on a daily basis? I’m most certainly not saying that, either. What I am saying is that now that I have to deal with “just”–if you know what I mean–pain of RA (or whatever the doctors do and don’t want to label it as, based upon personal experience) I am feeling more strong, and more empowered, than ever before.
Some people have suggested that maybe I was tapering down too quickly. Maybe I was, maybe I wasn’t…I dunno. What I *do* know is that three months ago, when my dose was at its all-time high (not only in amount, but also length of use–well past the half year mark), I wanted *completely out* of the entire Prednisone thing. It had far surpassed the original goal of trying to take away (mask?) some of the pain, and of allowing me to try to hold on to some semblance of mobility. It was not only, at a certain point, having the complete opposite effect…it was also heightening the effects of my downward emotional spiral (otherwise known as “depression”).
Because when every second felt like I had just drank a six-pack of Red Bull, when I would lay facing the ceiling until the sun came out, night after night, wondering how I was still going, even though I hadn’t slept in days, I knew that things were not right.
I wasn’t just losing control. I had already lost control.
And while I thought that previous tapers that I have gone through were challenging, I soon realized that they absolutely paled in comparison with what I was going through now. As I sat there, knowing that it would take many months to taper off the Prednisone, I told myself that even though I couldn’t (immediately) stop the free-fall that I was in, I could at least start to soften up my “landing” as best I could.
I knew a crash was imminent, and it was frightening as hell.
I also knew that once I reached “rock bottom,” that all I could do is bounce back up.
And I am bouncing. I am bouncing not in a way that is removed from reality, nor overly optimistic. I am bouncing in a way that is allowing me to get even closer to the pain, to accept it even more into my life. This chronic pain continues to teach me that I need to accommodate and respect the pain, when necessary…and also that I need to work right through the pain, when necessary. (The fun part of continuing down this journey: trying to figure out when it’s all about doing something, and trying to figure out when it’s all about *not* doing something.)
My shine is back, as I return to walking distance that I haven’t walked in more than a decade. This has not only been obvious over the past couple of weeks to those who are a part of my personal life, but it has also started becoming increasingly obvious to those who follow the adventures of RA Guy, both here on my blog and on my Facebook page.
Lots of people want to know, what new treatments am I on? What new medicines have I started?
I came to New York City earlier this year, looking for answers…and while, over the past few months, I didn’t find the answers that I was expecting, I did find the answers that I need.
I found out that exercise–and it’s very gradual incorporation back into my life–can have a more profound effect than I could have ever imagined, or even hoped for. (I also learned that Manhattan sidewalks, as intimidating as the can be to a person like me who walks with crutches, do provide quite the workout.)
I found out that certain foods definitely trigger flares for me. I didn’t need any fancy food allergy tests; all I needed was to remove as much as possible and then slowly re-introduce the most basic list of anti-inflammatory food items, in order to find out what was and wasn’t helping my body. (I also found out that food here in the U.S.–even fresh, unprocessed food–is not nearly as healthy as the food that I am used to eating back home in South America.)
I found out that meditation is not something that I need to “make time for.” It’s something I need to DO. (And that Pema Chodron’s books are excellent.)
I found out that stepping away from the computer, and going outside for some fresh air, can be very habit forming. (I simultaneously learned that I really don’t need to check email, Facebook, and so on all the time. Once or twice a day is plenty enough…and on some days, not even that!)
I found out how futile it is to resist change. Life is all about change, and to tap into this is to tap into something powerful. (And that just like pain, change is something that should be embraced, and not feared.)
A couple of weeks from now, I’ll be flying back to South America, from the heart of summer down to the middle of winter. I’ll be flying back to my husband, who helped me every day of this journey, whether it was over the phone, through Skype, and with text messages. I will be flying back to my dogs, whose ears I could see perking up when I spoke to them on video calls. I will be flying back to my rheumatologist, who makes house visits!, and to my physical therapist, who knows my body, and its corresponding aches and pains, almost as well as I do.
I won’t have any new drug treatment options in tow, but I will have all the answers that I was looking for.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Rheumatoid arthritis also known as RA affects every individual differently. When living with RA a person should try to remain physically active. These are some exercise options for whatever level of RA you might be experiencing.