RA Guy’s Book Club: “How To Be Sick” By Toni Bernhard

Discussions will be posted on Monday and Thursday of each week. For the reading schedule and complete set of links, click here.

Please join us for a book club discussion that will be held here on my blog, starting the week of Monday, January 23. There will be no need to go to another page and create a specific account. Instead, once or twice a week I’ll post comments and questions, which will be related to the section of the book that being discussed. Anyone who wants to jump into the conversation, and add their own responses and/or questions, will be welcome!

This book runs just a little over two hundred pages total, so it’s not too long a read. By dividing it up, as shown below, I’m hoping to make participation in this book club discussion accessible to as many people as possible, even those with busy schedules, lots of medical appointments, and frequent flares!

Week of 1/23: How Everything Changed (Chapters 1-2)
Week of 1/30: Accepting Pain (Chapters 3-5)
Week of 2/06: Finding Joy and Love (Chapters 6-9)
Week of 2/13: Turnarounds and Transformations (Chapters 10-15)
Week of 2/20: From Isolation to Solitude (Chapters 16-18)

This will be the first time that I am reading this book myself, and I look forward to being able to share this experience with others.

Update: Toni Bernhard, author of “How To Be Sick”, will be participating in this book club!

Your author here. I’m looking forward this too and will help in any way I can. Thanks RA Guy! Oh, and people should not feel shy about saying that this or that practice doesn’t work for them. I say in the Preface that some may resonate more than others. I won’t be offended! Warmest wishes, Toni

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
by Toni Bernhard

This life-affirming, instructive and thoroughly inspiring book is a must-read for anyone who is—or who might one day be—sick. And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even life-threatening illness.

More Info: www.amazon.com/How-Sick-Buddhist-Inspired-Chronically-Caregivers/dp/0861716264

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Putting Out The Welcome Mat For My Pain

Late last night, at around two in the morning, I finally finished reading Stephen King’s “11/22/63″. (It’s an excellent novel, which I would highly recommend.) As soon as I turned off the lamp on my nightstand, and rolled under the covers into my bed, I sensed a flare coming on.

My 1st reaction: Oh no, here we go again…

My 2nd reaction: Hold on a second…I know *exactly* what’s going to happen during the next 30-60 minuntes, second by second. Why not use this as a test, in order to see if I can get through this flare with a new-found sense of awareness?

My 3rd reaction: Cool! Flare, I actually *invite* your arrival, and welcome you with open arms!

And, even though I never thought I’d ever say these words, [insert Carrie Bradshaw's narrator voice from "Sex and the City" here] last night was the night that I got stood up by a flare.

Okay, I know that recently, I’ve written a lot about accepting the pain, and about getting used to the pain. Maybe welcoming the pain is the next logical step…even so, the last thing that I’d ever imagine myself doing, during those initial minutes when I feel a flare taking hold, was to actually welcome the flare ( and all of the pain that it brings along.) But having done so, and having seen the flare just as quickly disappear–as it did last night–I’m beginning to wonder if I might have actually tapped into something really useful, and into something even more powerful.

Which is the notion that, as soon as I–honestly and genuinely–welcome the pain into my life, whatever remaining stranglehold it’s had on me for so many years just suddenly goes away. Now, I know that I may still encounter many challenges in the future when it comes to pain…but having experienced what I describe above, even if only for one time, was a very empowering experience.

Somehow, though, I sense that this is not going to be the only time that I experience what happened last night. And while I would never egg on a flare, I actually find myself anxiously awaiting the arrival of my next flare, so that I can once again put into practice this new strategy, and see if it works again.

Welcome a flare? Previously, I would have told myself that such a thought was just outright crazy…but now, I’m beginning to think otherwise.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Is It Possible To Get Used To Chronic Pain?

For years, I would have adamantly said ‘no’. Less than 24 hours ago, though, I caught myself saying ‘yes’.

Yesterday afternoon, right before my physical therapy session, I went to get a haircut. The lady who cut my hair yesterday was the same lady who’s been cutting my hair since 2003…longer than I’ve (officially) been living with rheumatoid arthritis. (My first symptoms started a few years earlier, although I didn’t know it at the time…I used to just chalk up the strange foot pains and knee pains to “too much walking.”)

Now this lady who cuts my hair, if you were to ask her what rheumatoid arthritis is, she’d probably shrug her shoulders, and say she doesn’t know. If you were to connect the pieces for her, though, and say that rheumatoid arthritis is the illness that I–her longtime customer–live with, then all of a sudden she’d know even more than she could have imagined. She’s tell you about the rough mornings, the never-ending pain, how it can affect people of any age, the constant cycle from unaided walking to canes to crutches and back again, the expensive medicines that can sometimes cause severe side effects, and along those same lines (she’s a hairdresser, don’t forget), the hair loss.

On more than once occasion, as much as I wanted to deny it myself, she was the one who would force me to accept that my hair was indeed thinning out, falling out, changing colors, or all of the above.

But the main point of this blog post isn’t about hair loss, something that has evoked so many different emotions when I’ve experienced it in the past. At the moment, having been off medicines for almost a year now, my hair is back to it’s normal, healthy self. What I’m leading up to was the small-chat conversation that took place yesterday, when I was getting my hair cut.

My hairdresser, as usual, asked how I was doing, and inquired into my current state of health. I told her that in general I was doing okay, but that for the past couple of weeks my mornings had been particularly rough. I mentioned that I was going to physical therapy right after she finished cutting my hair, and then I showed her my hands, and we both commented on how the knuckles were just red enough for the color to be slightly noticeable. (Just a dash of rouge, we might had said, had we been referring to the makeup catalogs that lay on the counter in front of us.)

Then, as this ‘medical’ part of our conversation came to a close, I summed it up with the following: “The pain never ends, no matter how good I might look on the outside…but at a certain point, after so many years, I just decided to get used to it all, and move on with my life.”

And there I had it. After years and years of telling myself that I would *never* get used to this pain, even once having discussed as much with my psychologist a couple of years ago, if such a thing (getting used to the pain) was even possible (psychologist: yes, me: no), here I was, for the first time that I could recall, actually saying that I had indeed gotten used to the pain.

I started to look back at some of my most recent flares, and focused on the most recent one, which took place at two o’clock in the morning this past Saturday. While I once again felt like I had been pushed up next to a bottomless abyss, and was only seconds away from falling into I don’t-know-what (I’m not even trying to be ‘dramatic’ with the words that I use to describe what it’s like to be in the midst of a major flare), I started to realize how ‘routine’ all of this actually was.

The constant pain. The flares out of seemingly nowhere. The heat pack or electrical pads that are wrapped around the worst of the worst joints (because there are never enough to go around to all of the joints.) My mind, struggling to remain balanced, and trying to figure out what is within its control, as my body goes haywire. My breathing, which becomes much more rapid, only complicating all of the issues that are at hand. The vaporizer, that has been turned on by my partner, without me even realizing as much. There are wisps of lavender oil in the air, and if I try to grab on to them and slow down my breathing, things will get better.

That’s exactly what I do…I sometimes don’t know what to hold on to, in order to try to keep some sense of ‘sanity’ (or to prevent a sense of ‘insanity’ from taking over), but grabbing on to my breath always seems to work. Then, trying to figure out how long I’ve actually been in this flare…has it been 5 minutes, or 15 minutes? In the back of my mind, I remind myself that the absolute worse usually lasts about half and hour…sometimes even three-quarters of an hour..usually never longer than an hour. Compare what I’ve gotten through with what I still need to get through, and it might seem like too much…but if I just keep repeating what I’ve done the past few minutes, over and over and over and over again, I know I’ll be okay.

And then that split second finally arrives, when I can feel my flare breaking. The pain is still quite intense, the only difference being that it’s not getting worse by the second…and while it will hover here for another minute or two, I know that I’ve once again gotten through the worst, that the pain will soon let up. (This is indeed what happens, only a few seconds later.) And then the ‘residual’ pain, from joints which have just taken one of the worst thrashings in their life. (And no matter how many times this happens, it still qualifies as “one of the worst.”)

All of this that I describe above, and much more: I’m used to this.

I don’t write these words out of sadness, or self-pity. I write them from a new-found awareness that I am indeed used to the chronic pain that flares at regular intervals…and that by admitting as much, the prospect of getting through another flare just seems a little more easy, a little more possible. I may not be able to remember these thoughts, these declarations of self-strength, next time I’m in the midst of a flare…but I’m certainly going to make it my goal to try to do so.

No matter how bad it might get at times, the truth of the matter is, I am used to this.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Tracy Pierce

Tracy Pierce

Real Profiles of Rheumatoid Arthritis
Photos © Tracy Pierce

Name?

Tracy Pierce

Age?

33

Location?

Elizabethton, Tennessee, United States

How long have you lived with RA?

10+ years.

What advice would you give to someone who has just been diagnosed with RA?

Educate yourself about RA. Work with your doctor to see what is best for you. No one persons treatment and results will be the same so if your meds are not working then you need to let your doctor know. If you have a doctor that doesn’t want to help or change your meds or work with you then find another doctor asap. I made this mistake by sticking with the same rheumatologist even when my treatment was not working at all and was in the worst pain of my life. I was simply shrugged off as overreacting but as soon as I switched RA drs…I got relief because he changed my meds and really listed to me when I told him what hurt and the pain level was simply out of control. Also, I would advise a good support group either in your area or online. A good support system is essential with RA.

Do you use any mobility aids?

Not at the moment. I do own a quad cane, a raised toilet seat, braces/splints for wrists, hands and knees and alot of different heat raps. One heat rap for the neck, small ones, medium sized ones and electric blanket. I also have to wear a mouth guard at night when I sleep because the RA also effects my jaws and without it my jaws KILL me!

How has living with RA helped to improve your life?

I have always considered myself as a nice quiet person that is very compassionate but RA has taken my compassion to another level. It has taught me to not judge a book by its cover that you don’t have to “LOOK SICK” to be sick and in pain. It has definatly made me a much stronger person. My husband tells me I am the strongest person he has ever met. (Although I don’t feel that way most of the time) I just know at the end of the day I can’t give up…I just can’t! It is not an option. My children and husband need me too much to give up and if I give up my disease wins and I lose.

Do you have any visible signs of RA?

I have a ton of rheumatoid nodules on both elbows and at times it makes me self conscious. My big toe on each foot is turned in. Visible swollen fingers. Very restricted jaws (can’t open mouth very much at all and can make it hard and painful to eat.)

Can you please describe some of your favorite coping strategies for living with RA?

I am very thankful I have a good support system and my husband is my rock and without him I don’t know what I would do. If I am hurting alot then rest is my friend. I use heat wraps and packs alot and electric blankets. Heat feels so good on aching joints and muscles. Thankfully my husband steps in and takes care of household things and the running so I don’t have to push myself to do it when I am hurting. Honestly if I am hurting alot a good cry always helps me. Keeping it bottled up only makes it worse for me I do try to be strong and not complain it does help when it gets to be all too much to talk about it to someone.

Can you please describe your current medical (traditional and alternative) treatments?

I have been on Arava, Methotrexate (pill form and shot), Prednisone, Enbrel, Immuran and Percocets and a TON of Ibuprofen. I am in the process of getting started back with a RA doctor and as of right now I am not on anything but Ibuprofen and percocets till I go back next week to the RA doctor.

Is there anything else about yourself that you would like to share?

I have a passion for raising awareness for Rheumatoid Arthritis. It is so missunderstood. Even my family doesn’t really have a clue what it is like and to the degree of pain that one suffers with RA. I have an Ebay store were I sell edible cake toppers/images (cake not included, cake topper only) which is named Cakes 4 Cause to try and raise awareness for Rheumatoid Arthritis. Each order comes with a website link with tips and tricks for your applying your edible cake topper along with alot of RA information and my story and such. One day I really want to write a book on my journey with RA.

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‘Show Us Your Hands!’ Update

Wow! I just took this screenshot, and I’m amazed at how much this community collage continues to grow! Thanks to everyone who has submitted a photo for this project. If you haven’t participated yet, what are you waiting for? Please send in your photo still, and let’s see how much we can continue to grow this symbol of the wonderfully supportive autoimmune arthritis community that continues to unite around the world!

For more information, please visit www.showusyourhands.com.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

3 Comments