Guaranteeing That Today A Good Day (Even If You Are Experiencing A Lot Of Pain!)

Years ago, soon after I started writing this blog, I was exhausted. I would wake to another day of immense pain and not know what to do. It often felt like I was parasailing; another gust of pain would come along and–like it or not–I had to go along for the ride. I remember thinking that if I could only get a half a second ahead of the pain, that I would be okay…and this felt like a perfectly acceptable goal, until I realized that I was in for the marathon of my life. Not only would the running never end, but I would also constantly be looking over my shoulder, looking at the pain that just never seemed to go away.

I’ll never forget those feelings of desperation.

One day is all I need. Just one day of no pain. One day of complete rest. One good day…and I will be okay.

That day I was looking for, however, never seemed to appear. The cycle of exhaustion, sadness, anger, depression, and every other negative emotion imaginable (and a few which were previously unimaginable) only continued to grow.

Then, just when it felt like I couldn’t take one more day of pain, I woke up one morning and asked myself: Just because I wake up with pain, does this mean that I should immediately write off my entire day as being a bad day? Yes, I know this is what I had been doing for what had already been years…but what if I were to wake up, and–despite the pain and disability–tell myself that I was indeed having a good day?

A few days later, I decided to make the following public promise, right here on my blog:

I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.

Since I wrote these words, my life with rheumatoid arthritis has never been the same. Sure, I still continue to experience pain and inflammation which leaves me suddenly unable to move my entire body; for exactly how long, I never know. I often have flares which are so world-changing, that it feels like I’ve passed through the back of a wardrobe. (And unlike others who are fortunate enough to  feast on Turkish Delight, I am advised to take ever more toxic medicines!) I live a lifestyle which, only during my recent visit to my hometown, is eerily similar (in pace, at least) to that of my retired parents! I am happy to share, though, that I have finally found someone who takes more naps than I do: my lovely one-year-old niece/goddaughter.

But, despite all these seemingly negative aspects of life with rheumatoid arthritis, I have finally reached the point where years ago I longed to be: I am happier than ever to be able to have one good day after another. (The secret, you see, was figuring out that even with the pain, I can still have a good day. In fact, I rarely ever–no matter how bad the pain is–label any of my days as being bad. Have you always thought that it’s impossible to guarantee that tomorrow will be a good day? Think again!)

If you currently find yourself in a place where it’s hard to connect with your thoughts or with your breath because the chronic pain just seems oh so overwhelming, if life seems like a series of bad days, one after another, do yourself a favor by doing exactly what I did many years ago.

Tell yourself that today is a good day, no matter how much pain you might be feeling right now.

Tell yourself that tomorrow is going to be an even better day, no matter how much pain you might be feeling then.

Trust me…it works!

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

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The Best Of RA Guy

These are the top five posts on RheumatoidArthritisGuy.com, according to number of page hits.

1. 60-Second Guide to Rheumatoid Arthritis
2. 10 Things I’ve Learned From Living With Chronic Illness
3. You Know You Have RA When…
4. Real Profiles of Rheumatoid Arthritis
5. Superhero Wall of Fame

These are five of my favorite posts from the past year, according to…just the way I feel!

1. The Importance Of Having Confidence In Our Decisions
2. Through The Looking Glass
3. Coping With Chronic Pain: What Is Beautiful About Your Life?
4. Reacting To Other People’s Reaction
5. Lifestyle Changes & Eliminating The Blame Game

And two more, just for fun!

6. Finding Peace In The Pain
7. How My Pain And Disability Improved My Life

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

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Lessons Learned From My Recent Surgery

Two weeks ago today, I was told that I needed surgery in order to correct my paraumbilical hernia. (Although most male hernias are corrected through an incision in the groin, mine was going to require a cut right above the belly button, through the abdominal muscles.) Knowing that this was my only option, I decided that instead of having thoughts of this upcoming surgery lingering in my head for days or weeks on end, that I would prefer to get it done, and over with, as quickly as possible.

Which–don’t get me wrong–doesn’t mean that I wasn’t preparing myself as much as possible for the surgery. In fact, quite the opposite took place…but as a 39 year-old-guy who had never undergone a surgical procedure in his life, and despite all of the information that is available online, I still really didn’t know exactly what to expect.

Since I live with rheumatoid arthritis, I know that I will one day reach a point where surgical procedures become a more common part of my life, whether it be arthroscopic joint cleaning or partial/complete joint replacements. So while my surgery a few days ago had nothing to do with my RA, I decided to adopt the mentality that I was going to try to learn as much as possible from this procedure and hospital stay, so that I may be better prepared when I have to undergo some of the inevitable RA-related surgeries down the road.

What have I learned so far?

Find information online (wisely). The Internet has become one of our first go-to’s, when it comes to finding information…as is no doubt should be. I think it’s important, however, to use this information wisely. Case in point: in the days leading up to my surgery, Googling “hernia surgery” would return lots of helpful information, including (whether “helpful” or not, I sure both sides could be argued!) pages with titles along the lines of “Percentage of deaths associated with hernia repair surgery.” Now I’ve never been a bury-your-head-in-the-sand type of person, but I found nothing beneficial with this type of information in the days before my surgery, and accordingly did not click on any such link.

I should also share an example on how the information I found online actually made me underestimate how difficult and painful my recovery was actually going to be–the constant repetition of two words: outpatient surgery. My surgeon from the get-go informed me that he planned to keep me in the hospital at least three nights. As I continued to read US-based content which continued to shine a positive light on the fact that you will more than likely get to go home the same day of surgery (yippee!), I started to think that my doctor here in South America was just being overcautious. I have since learned that I needed *every* minute that I spent in the hospital, and during the first day of my recovery I wondered how they could possibly even think of sending someone in my condition home.  (I was once again sadly reminded how so many medical decisions in my home country are based on financial interests, and not patient concerns.)

Start a true countdown, one day in advance. Exactly 24 hours before I was going to be admitted into the hospital, I started my mental countdown. Luckily I had nothing scheduled for that day, so I could focus all of my time and energy on getting ready. I signed offline, packed my bag for my hospital stay, read, watched some mindless television shows, took a nap, and so on. Some people may think that I was trying to keep my mind off the events of the following day…but surprisingly enough, I did the exact opposite. I started to envision what is was going to be like walking into the hospital, being wheeled into the surgery room, waking up from my surgery, what the first 24 hours might be like, what the first 48 hours might be like, etc. I did so in a way, however, that didn’t make me nervous, but that made me feel prepared…and I continued to repeat this affirmation: I am having surgery to improve my health. I may experience some pretty intense pain, but my healing has *already* started.

In the hours leading up to surgery, relax as much as possible. By this point, everything is already in motion. I have been admitted in the hospital, and my abdomen has already been shaved. Now it’s time to play some Sudoku, listen to some music, chat with people around me, and so on. Instead of thinking of the arrival of the bed which will take me to the surgery room as the scary first step of the surgery process, I remind myself that I am already in the midst of the process, and that being wheeled to the surgery room will just be the next step of many which has already started. As a big fan of Bach Rescue Remedy, I also use these few hours before surgery as an opportunity to enjoy some Rescue Pastilles, Rescue Gum, and Rescue Remedy Spray.

Never underestimate the importance of reminding hospital staff that you have RA. Sure, it’s written down somewhere in my charts…but the person who is wheeling me to the surgery room, or–in my case–the person who is prepping me on the surgery room table, probably is not aware of the fact that I live with rheumatoid arthritis, and that extra caution should be used when moving my limbs or joints. (One of my last coherent memories was the flash of pain that passed through my right shoulder, as my right arm was being strapped into its holder…and even though I was already starting to fade, I made a point of telling everyone in the operating room that I had rheumatoid arthritis, and that extra care needed to be used when moving my body.)

On a funny side note, I am 5′ 11-3/4″ tall. (Or basically six feet, for practical purposes…or 1.83m, for metric folks.) Being a resident of an Andean country in the heart of South America has always presented certain challenges when it comes to finding clothes and shoes, due to the fact that I am so much taller than the average person. (Local average male height: 5′ 3″.) Well, as soon as I lay down on the operating table, I immediately thought to myself: here we go again! Both of my feet, all the way up to the shins, were dangling over the bottom edge of the table. Luckily I was not the first person who encountered this situation, immediately an table extension was ordered, and wheeled into place.

There might be moments when I feel completely unprepared, but I have to trust that everything is okay. For me, these were the two hours that I spent in post-operative recovery. While deep down I knew that this was the best thing for me, I just wanted to go back to my room and be surrounded by people I knew (and continued to say as much to anyone who approached my vicinity.) As the anesthesia started to wear off, and as I started to experience a pain in my abdomen unlike anything I had ever experience before, I slightly chuckled to myself that being wheeled into the operating room was the easy part…and it wasn’t until I was wheeled out, that the true nature of my challenge really became evident. I was tired. I was woozy. I was in pain. I was thirsty. I was getting annoyed that some buzzer next to me kept on going off. I was getting more annoyed when the nurses repeatedly told me that I needed to take deep breaths. I kept on taking off my oxygen mask. They kept on putting it back on. (Did I mention we’re at 12,000 feet above sea level?) I was, to put it quite frankly, just another extremely cranky patient recovering from surgery…but in the midst of my drug-induced stupor, I continued to smile, and told myself that I had every right to be cranky!

In the hours and days following, take things S-L-O-W-L-Y! One thing that only those of us who live with rheumatoid arthritis will ever experience: the hilarity of reminding yourself that you need to be as patient as possible with, and work as much as possible on, your recovery…so that you can as quickly as possible be back to the point where the *only* thing you have to worry about is, well, your chronic pain and disabilities. Or the confusion of trying to figure out if the difficulty walking is more related to your chronic condition, or to the huge incision in your stomach. Of having proudly declared in the days leading up to the surgery, that if you can deal with RA flares, then you can deal with anything! And then learning, soon enough, what’s it’s like to actually experience an RA flare less than 48 hours after surgery.

Following the dietary guidelines in the hospital is important; having a few small chocolates stashed away in the top drawer of your nightstand is even more important. (Enough said!)

And last, but not least.

Don’t forget to laugh…even when laughing hurts like heck, due to the big incision in your abdomen!

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

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I Don’t Want To!

Over the past week and a half (don’t forget, I’ve only been home two weeks since spending three months in the U.S.), I’ve received more than my fair share of unsettling news. (Or, as I like to put it, I became a triple crown winner in the trifecta of chronic illness!)

First, I received new that the first appeal for my disability benefits was denied. As of today, it’s officially been 1,076 days since I started this process.

Then, a few days later I found out that the lump in my stomach was a hernia, which needs to be surgically repaired. I don’t have health insurance, which means that I’m going to have to pay everything out of pocket. (And just when I’ve saved up enough money for an arthroscopic knee cleaning, this comes along…)

And Friday afternoon when I picked up seven pages of lab results, I immediately noticed that my liver enzymes were elevated, a result of the methotrexate pills that I have been taking for a little under half a year. (I’ve previously had similar hepatotoxicity while taking Arava.)

As I received each piece of subsequent news over the past 10 days, my reaction was one of “you’ve got to be kidding me”…but as with some many other aspects of living with a serious chronic illness, I knew that none of this was a joke.

In the past, each one of these items alone would have been sufficient to drive me into a downward spiral of depression,  which would take weeks to recover from; all three of them together would have made me feel like my life was in complete shambles, and would have taken me months(if not years!) to bounce back from.

So as I sat there Friday evening thinking about all of these new challenges on my horizon, with tears rolling down my cheeks, I thought to myself that if there were ever a time to feel sorry for myself, that this would be it. If ever there were a time to just stop trying to move forward and throw up my arms in despair, a time to sulk in bed and not look forward to the following day, that such a time would be now.

Something happened that night, though, which pleasantly surprised me. Just as I was giving myself permission to feel sad, angry, and depressed, I found myself saying:

I don’t want to!

I don’t want to get stuck in sadness, and stop moving forward. I don’t want to avoid the problems in front of me, and allow them to grow even bigger. I don’t want to spend a minute feeling down, when I can instead continue to laugh, and to be happy.

So I immediately reached out for help, and asked friends and family for words of encouragement. I started researching what I needed to do, in order to work through each one of the issues on my plate. I gave myself the weekend to rest, knowing that the upcoming week would be more hectic than usual…and I told myself that working through so many simultaneous challenges would only make me stronger, and would only make me better prepared to deal with any future challenges which life, or my chronic illness, might decide to present down the road.

Tomorrow, I’m going to my local embassy to file the necessary paperwork to continue with the appeals process for my disability benefits.

Wednesday, I’m tapering down my weekly dose of methotrexate, as my rheumatologist and I discussed this afternoon.

And on Thursday, I’m going to to the hospital for my hernia repair surgery. The doctor want to keep me a little longer than usual–until Sunday–in order to ensure that there are no complications in my recovery, taking into account that I live with rheumatoid arthritis and walk with crutches on a good day.

Life may sometimes thrown bigger challenges in our path that we might think we’re prepared for–sometimes even multiple challenges at the same time–but the secret to working through them remains unchanged: one minute at a time, one hour at a time, and one day at a time.

And if our progress slows down a little, that’s okay. What matter most, is that we keep moving forward!

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

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World Suicide Prevention Day 2012

“Light a candle near a window”, is the call made by the International Association for Suicide Prevention, in collaboration with WHO, on the occasion of World Suicide Prevention Day 2012. It is intended as a message of hope and understanding for those who attempt to end their lives due to feelings of despair and lack of hope.

The theme of World Suicide Prevention Day this year is “Suicide prevention across the globe: strengthening protective factors and instilling hope”. The aim of the Day, which is celebrated annually on 10 September, is to raise awareness among the scientific community and the general population that suicide is preventable.

Read More: http://www.emro.who.int/media/news/suicide-prevention-day2012.html

In a blog post that I wrote a little over a year ago, I–for the first time ever–spoke about my own personal struggle with suicidal thoughts, which I experienced soon after being diagnosed with chronic illness. Please SHARE, in the hopes of helping others who might be facing some of the same challenges right at this moment.

Don’t Lose Hope!
by RA Guy on July 19, 2011

Today’s post discusses the sensitive yet important topics of depression and suicide. I have received suicide letters here in the past both as emails and blog comments (never published of course), and my hope is that by sharing my own personal story, I might be able to help others who are struggling with these issues themselves.

Read More: http://www.rheumatoidarthritisguy.com/2011/07/dont-lose-hope/

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