I have a story to tell. It does not have a happy ending. But, perhaps, it has no ending at all. Perhaps we are still in the middle of the story, and this is just the hard part. This is the story of the past seven years, which I will share in segments over a series of posts.  This is the second post in the series, which I wrote a few weeks after we had completed the IVF procedures. Click here to read part one of our story.

You guys: this is important! This is exciting! This is not an ordinary book review! This book review is special in two regards: 1) it was authored by a dear friend, Kelly Young, who worked tirelessly and put countless hours into creating this powerful and compelling resource, and 2) it conveys the most important information that needs to be communicated to improve the lives of people with rheumatoid disease -- including myself, my stepdad, several friends, Kelly herself, the online #rheum community that has meant so much to me, and countless others who live with this disease.

Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease takes a comprehensive look at the illness commonly referred to as RA (rheumatoid arthritis), with each chapter underscoring the inadequacy and dangers of referring to this disease as a "type of arthritis," with facts about the dangers of this disease that often exist in the extra-articulate (non-joint) aspects (heart, lungs, vascular system, eyes, etc). Kelly walks readers through a brief history of our knowledge of rheumatoid disease (or, RD - the preferred term for the disease by many patients and rheumatology professionals), then takes a careful look at what RD is and what RD isn't. The book proceeds to outline the serious dangers of rheumatoid disease, the systemic nature of the illness and multitude of symptoms and manifestations that patients may experience outside of the commonly associated joint symptoms.

With a plethora of footnotes and references to existing research, Kelly has truly done her homework and makes it easy for the reader to find follow-up readings. Rheumatoid Arthritis Unmasked is a must-read for anyone who is affected by rheumatoid disease -- whether you have the disease yourself, have a loved one with RD, or are a professional involved in rheumatology. Kelly does a fabulous job of balancing the content so that it is relevant and properly documented for healthcare professionals, yet is also comprehensible to the layperson.

For those not familiar with many of the medical or scientific terms used in this book, there is a very helpful glossary in the back. She encourages people to not be discouraged if they don't understand every term used: the important information will still be evident. It would be a great reference resource for patients and caregivers to be able to easily look up more detailed information about this disease -- and arming them with the knowledge they need to advocate for better care.  There are so many aspects of rheumatoid disease that I did not know existed when I was diagnosed. This book can help patients connect the dots between seemingly unrelated symptoms, and can help detect disease activity early, so that patients have the best chance to get early treatment (which is also the best chance for positive outcomes). It's informative for both the newly diagnosed and those with longstanding disease. After living with this disease for 13 years, and being involved in disease awareness and patient advocacy, I still learned a lot!

I read the Kindle version of the book, then ordered a paperback! It just arrived on Tuesday!

The book is available for sale on Amazon (paperback or Kindle):  http://bit.ly/RAunmasked  - get your copy today! The physical book is awesome, but the Kindle version is really neat because you can do a search. So, if there was a topic that you wanted to come back to, it's really easy to find. You can also do digital highlighting and save those to reference back to!

If the content of this book is taken to heart, it has the potential to truly change the landscape for rheumatoid patient care -- even saving lives -- and to improve the outlook for this disease, providing some powerful action steps that we can take right now. I hope that everyone who reads this book recognizes the need for a name change so we can finally drop the "a" word (arthritis), unmask the true nature of this disease and increase public awareness for RD. This is a huge part of what the Rheumatoid Patient Foundation (RPF, of which I am currently the Vice President and Kelly is president and founder) is working toward. I'd encourage you to also follow the work of RPF and help support our mission of improving the lives of people with rheumatoid disease (PRD).



A big congratulations and THANK YOU to Kelly for doing the impossible and publishing this phenomenal resource -- I am so grateful for her and her leadership in spearheading this movement to uncover the truth. I hope that my friends and family will take the time to read it and gain a better understanding of this disease that I will live with for the rest of my life (unless we should be so fortunate to find a cure in my lifetime). Misunderstandings abound and knowledge is truly power. Thank you to all my friends and family, and especially my loving husband, Tom, for supporting me and encouraging me on my health journey.

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Help Spread the Word!

Please help us spread the message that rheumatoid disease is a serious, even life threatening illness, and not a type of arthritis.

Below are a few of my favorite excepts and facts from the book. Please read consider sharing these or the images in this post on your own social media profiles to help unmask RA and get the truth out about rheumatoid disease!

Quotes from the book:

"Lives can be saved by simply recognizing that extra-articular disease is not rare and that rheumatoid disease exists beyond arthritis." (RA Unmasked, Chapter 11)

"No other single action could do more to advance public understanding of what the victims of this disease endure than to call it by what it is: a disease." 
(RA Unmasked, Chapter 11)

"The question is, if patients do not have 'articular RA' (articular arthritis), what do they have? Since 'articular' means 'related to joints' and 'arthritis' literally means 'inflamed joints,' Mikuls et al. seem to state that the patients studied have arthritis that is not articular or 'non-joint joint inflammation.'" (RA Unmasked, Chapter 4)

“Patient complaints of extra-articular symptoms often go unaddressed, one reason that the mortality rate of RD has not significantly improved. Patient care could be improved if medical professionals were made more aware of the need to address extra-articular disease.”  (RA Unmasked, Chapter 4)

**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 6 Prompt: "tell us your stories about your diagnosis, what were you thinking, feeling or when did you first know something was wrong?"

Oh, college days of yore...

It was a sunny spring day in 2004.  I was 19 years old, and a happy, healthy college student at Cedarville University in Ohio.  Or so I thought.  It was almost the end of the semester when I noticed that a finger on my left hand was sore -- almost as though I had somehow jammed it.  I didn’t recall doing anything to it, but who knows--I was fairly active.  I ignored this symptom for a while, until I realized that it had been a few weeks and it had still not gone away or gotten any better.  My mom prompted me to make an appointment to see my doctor and find out what she recommended.  Nothing much was accomplished at my first doctor visit.  She simply referred me to a hand specialist.  By this point, I believe college was done for the semester, and I had moved back to Michigan.  I spent the summer living with my dad and babysitting my cousins, while taking courses at the local community college and preparing for a more permanent move to West Michigan.  At some point early in the summer I had my appointment with the hand specialist.  Based on my symptoms, he believed that I had tendinitis.  He prescribed some Naproxen, told me to take it for a few weeks, then he’d see me back.  

**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 5 Prompt: "Exercise and RA – write about your favorite exercise. What do you like about it, and what keeps you going? Maybe you like to run marathons or do finger exercises. Perhaps you love to walk, or maybe stretching is your cup of tea. Maybe you are tired of being told to exercise? Give your readers the rundown on what does or does not move you."

I call this my "conquering RD" photo - a successfully pain-free backpacking trip on Isle Royale National Park

I've seen the issue of exercising with Rheumatoid Disease hotly debated. There's a huge push from most health organizations to exercise because it is good for your joints and will ultimately help you move better. Unfortunately, that's not always the case. I know a lot of people with RD who say exercise helps them tremendously. I also know a lot of people who say if they try to do any real exercise, they will end up in bed for a week reaping the repercussions. According to a survey of over 1,400 RA patients, conducted by the Rheumatoid Patient Foundation, 67% of respondents said that physical activity actually caused their RA pain to increase. Only 18% said physical activity caused their RA pain to decrease. So, what's the deal with exercise?

Here's the way I look at it: exercise is good for the body in so many ways, and an active lifestyle is of course healthy -- if your body is in proper condition to do it. But you have to listen to your body. For me, I can usually tell the difference between various types of pain caused by rheumatoid disease. There's the stiff, achiness that sometimes infects my joints and makes it difficult to move. In this state, I find that moving and stretching does, in fact, loosen up my joints and help me feel better. This is like the traditional "morning stiffness" that many people with rheumatoid disease experience (though not always in the morning!). Moving around and just getting on with everyday tasks often helps loosen me up and get me to feeling better. Unless...

**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 4 Prompt: "Five things I have learned – write about the five things you have learned about yourself, or RA. Perhaps you have learned what things like physical pain, injections, or morning fatigue are like? Perhaps you have learned new things about yourself?"

I think it's often true that the difficult times in our lives are the most formative and provide the greatest opportunities to grow and learn as a person. Life with rheumatoid disease certainly provides ample trials, but it is up to me to learn something and somehow become a better person because of them. Here are five things that I have learned from and/or about rheumatoid disease:

Rick Phillips of RADiabetes has put out the challenge to participate in "RA Blog Week" this week. While I'm not sure I can commit to writing a post per day, I figured I should at least get something published! More about RA Blog Week and the list of prompts can be found here. I have a few posts that I will be recycling, and today (Day 2) I'm opting to do a "wildcard" post and choose my own topic: a health update!

It's been a while since I have written a rheumatoid disease update. There's a *good* reason for that: there hasn't been a whole lot of change the past couple of years! My pain and inflammation have remained steadily low on the Hydroxychloroquine and weekly Humira treatment combination.  I do still take Naproxen as needed - but it's about once a day or every other day.  I am very grateful for the time I've had without much pain. My wrists are really the only thing that have still bothered me, and I'm pretty certain most of the pain there is from permanent damage. Actual, active disease activity is pretty low. Praise the Lord.

Rick Phillips of RADiabetes has put out the challenge to participate in "RA Blog Week" this week. While I'm not sure I can commit to writing a post per day, I figured I should at least get something published! More about RA Blog Week and the list of prompts can be found here. I have a few posts that I will be recycling, like today, Day 1.

Here's the day's prompt: "A day (or an hour) in your life – Pick a day, an hour or half a day and tell us what happens? Are you stiff when you get up in the morning? Tell us about getting ready to go somewhere, or going to a restaurant. Pick any unit of time and tell us what your life consists of."

Because my health has been pretty stable for a while now, there's not a whole lot new to write on what my life is like other than what I've written previously. So, we'll go into flashback mode!