The Tale Of A Superhero In New York City

NYCThe 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!

22 Comments
22 comments
  1. Caroline says:

    Exercise is very important. I was diagnosed last fall with RA and have been going to the gym three times a week. At my diagnosis I was having problems getting through my exercise routine but we simply rearranged it and now I still work out three times a week. I focus on flexibility, stability, and stretching so that I can keep in shape. My 83 year old mother who has had RA since she was 59 swims three times a week which greatly helps her. Keep moving. Good luck with getting off prednisone. I can’t take it – I’m allergic to it.

  2. Carla says:

    Thanks so much for the update! You’ve been in my thoughts these many months. I’m glad you found the answers — if not the answers you thought you sought — the answers you needed. I’m delighted that you’re feeling better and more positive. I know those at home will be very happy to have you back — as we are to have you posting again. Hugs.

  3. Michele Finaldi says:

    I can not even believe that I found this post from you. Thank you sooooo much for posting. I myself also just finished my Prednisone taper and the pain has been horrible. I have Lupus and RA and all sorts of things, and I have to say today is the first day I do not feel like dying. I thought the sweats were from my menopause, but they were so extreme, I knew it had to be the meds. The weather is going to start getting warmer next week here in NYC and we shall see if that helps or hinders me. Slowly starting my walking again. HAD to go on the prednisone cos my legs completely stopped moving. Praying I can keep it going now, and I wish you all the best here and when you get back home. Take care of yourself and thank you.

  4. Robin says:

    What a great post. I feel as if I could say all of those same things. Pain is pain. But to feel healthy in your body is wonderful. Exercise is essential to my life now, as are the changes I’ve made in my diet. I call them life style changes. Because I am going to be the best me I can be. You rock RA guy!! So happy for you!

  5. Cissy says:

    So happy for you & your journey on the states. Please keep inspiring us all even when you get home. May you find peace & comfort w/ all your loved ones around you. Wishing you much health & happiness!

  6. Larry says:

    It never ceases to amaze me that when I go looking for answers…….they turn out to be so much more better than the ones I sought!

  7. Helen Van Der Kley says:

    I can so relate…..Understand what you are going through..we are not generic illnesses..we are individual people and must do what works for us..Blessings..Helen

  8. Nan Hart says:

    Great post! Could relate to so many of the things you discussed….I too have been tapering and it has been a huge challenge. I also have discovered that exercise is absolutely crucial (for me swimming has been my salvation) and meditation in the form of guided imagery has become my new best friend! All the best, Nan

  9. Susan says:

    It is so good you are rejuvenated and will be with your loved ones soon! I get so much out of your posts. And this is from someone who has had RA for 40 (gulp) years. I had both knees replaced, at the same time, in 1992 and they are still working, even after being in a head-on collision several years ago. In 1985 I was diagnosed with very aggressive breast cancer and was given a grim prognosis. But, after surgery, chemo and radiation, then more chemo, I survived. However, I was warned by the oncologists to never again take certain meds. I am on my 5th week of recovering from foot surgery. I have 2 more weeks and I graduate to a shoe. My other foot was done 6 months ago. I am looking forward to starting a walking regime! My hands have “ulnar deviation”, but they are not painful. Yes, I have moments when I feel down, but I try not to use my energy in that direction. I have been very fortunate to have a loving husband, family and caring dog. I just wanted to tell a little about myself. Thank you for sharing your thoughts with us and for giving us hope.

  10. Angie says:

    Can someone help me on here. Since most of the people who follow this site has RA. I am 39 years old I was diagnosed a year and a half ago and I still don’t know how to live with this constant pain. I am on methroxiate and sulfasalazine and I have more bad days then good days lately. Is this normal? The last 4 days I haven’t been able to lift my left arm and now it’s my right arm too. Also my right foot hurts to walk on in the mornings. The pain moves around sometimes my finger too and my hip. How do you all deal with this? And again is this normal even thought I am on meds to have constant issues and pain??I am getting so depressed.

    Thank you for your help
    Angie

  11. Lene says:

    “I didn’t find the answers that I was expecting, I did find the answers that I need.” One of the most powerful sentences I’ve read in a long time. As a friend, watching you go down was hard, but watching you come out through the change has been wonderful.

  12. Austin says:

    Thank you for pouring your heart out to us. While I don’t want to say been there, done that, I think we can all relate to your words. Took me forever to come off the prednisone (almost two years) and I think they mental was worst than the pain. I constantly felt like I had something crawling under my skin, sweating one minute and freezing the next. Am on methotrexate and Enbrel and doing remarkably well. Now if I could get past the insensitive people who have no concept of what my body is doing and are offering advice. I certainly don’t want or need castor oil :( Safe travels RA Guy.

  13. Steve-o says:

    I am weening down from 40mg right now. Methotrexate gave Bed spins so now I’m trying Lefluenomide. I’m down to 30mg right now and starting to get little flair ups already… Biologics next I guess

  14. Becca says:

    RA Guy! I am always inspired by you…When I tapered off Prednisone, I had the most extreme and terrifying nightmares of my life. I was afraid to fall asleep. I can’t believe my grandma lived on that med for years. Her deformity was severe. Thanks for letting us all just listen, it helps.

    @Angie ⬆ I will be looking for someone to answer your question because you and I are pretty much in the same place and I would love to hear from others too!

  15. Marianna Paulson says:

    Angie,
    Have you been back to see your rheumatologist? It’s important to talk with him/her and explain how you are feeling and see what else can be offered to you.

    Also, one of the biggest things that has helped me is to transform my stress. Soaking in negative thoughts and feelings, like fear (which is normal in this situation), triggers the stress response, which contributes to inflammation. This becomes a vicious cycle, so the question is how to get off that hamster wheel of pain, inflammation, fear, insomnia, depression, frustration, more pain, and around it goes.

    On my blog, I suggest a number of proactive things you can do to help yourself. One of them is what I first suggested – call your rheumatologist.

    On this post, is a little trick I use when I notice some swelling, which is far rarer than it has been in decades past (THANKFULLY!): http://rheumfuloftips.wordpress.com/2012/08/17/pain-pain-go-away/.

    Warmly,
    Marianna

  16. Marianna Paulson says:

    A big round of applause and an Auntie Stress award to you, RA Guy!

    Some might call all those things you are doing to support your health “adjunct” – they are much more. They’re the essentials – for everyone. Cornerstones that not only support us in health, but also in well-being.

    Sometimes we have to go through the pain before we pay enough attention to make the changes that allow us to live – well – even with a chronic condition.

    Travel well – daily.

    Warmly,
    Marianna

  17. Sally says:

    Hi Angie, it does get better. It’s a disease of ups and downs. I remember the very beginning of the disease as being the worst for me – everyone is different. Right now you haven’t been put on some of the newer drugs for RA. If you have insurance and your current meds aren’t working, look into “biologics” such as Humira and Enbrel. If your current doctor is not open to the new meds, find one who is. Keep searching the internet for ideas — there’s a lot out there. Most of all, don’t give up! It’s easy to get discouraged, but there is a huge range of how people live with RA – some people feel very little pain after going on biologic drugs and some even go into remission! – some have more challenges with pain and mobility, but as RA guy demonstrates, you can still lead an excellent life. Good luck! Praying for you. Sally

  18. Jennifer says:

    Hi Angie!

    I am 37 and was diagnosed with RA at 30. I tried many, many medsbefore ending up with Rituxan – the last stop on the RA med train, lol. It sounds like your med combo or dosage isn’t working. There are many, many combinations. Have you told your rheumatologist this just isn’t managing your pain? I have issues with the ball of my right foot too. Sometimes it will swell from only very light stress (like walking too far the day before or wearing a certain pair of high heels). RA guy has it right when he talks about having or needing to do certain things each day to manage your RA. Exercise and yoga or mediation are MUSTS as is managing your diet. I wish you the best. I hope you can find better meds and a better method of managing pain with help from your docs or other holistic providers. Take care and good luck!

  19. Cindy says:

    As much as I love my rheumatologist, he rolls his eyes when I tell him that food will trigger my symptoms. It’s good to hear that you have people that listen to you.

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