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!

*Note: this post is part of a Blog Carnival, coordinated by RA Warrior

When challenged to think about what Rheumatoid Awareness would mean to me, personally, I had to give it some thought.  There are a lot of general positive outcomes that I think would come from greater awareness of rheumatoid disease (also known as rheumatoid arthritis).  Greater understanding of this disease would:

• Help people with rheumatoid disease (PRD) to be better understood by others -- including family, friends and medical professionals
• Prevent misinformation from being published so rampantly in the media
• Make it easier for PRD to get the accommodations and assistance they need
• Improve healthcare coverage and quality of care
• Underscore the need not only for different and better treatments, but for a cure, and hopefully prompt additional research funding

New artwork adorning my doc's office

I had my 6-month appointment with my rheumatologist today.  I love when I can go six months between appointments.  It means things are going well.  By and large, they have been going extremely well, and it's really been about a year and a half since I've had any real flares.  My wrists have calmed down significantly and I haven't had persistent problems in any other joints.

At today's appointment, I had two primary objectives.  Firstly, although I did not have any new symptoms or problems to discuss, I wanted to request a prednisone burst for my upcoming trip to San Diego for the American College of Rheumatology Annual Meeting (and, of course, share some details with my doctor about what the Rheumatoid Patient Foundation would be doing there this year -- even though nobody from my doctor's office will be able to make it to the meeting this year).  I've found that just a 10-day prednisone burst does wonders to ward off flares during periods of high activity, as ACR will undoubtedly be.  I typically will take 10mg for 5 days, then 5mg for 5 days.  I'll start that right before I leave for my trip and take it through my return. Prevention is the best medicine, or so they say (or, is that laughter??).

Having some fun in the photo booth at Brandon & Tracy's wedding!

I don't ever get sick. I mean, really, hardly ever. I have allergies, but those are different. Growing up, my mom always claims that the whole family would get wiped out with the flu, and I'd just get the sniffles. I always took my strong immune system for granted -- that is, until it got a little too strong and started attacking me.  I was diagnosed with Rheumatoid Disease (RD) when I was 19 -- which I joke (kind of) as my immune system getting bored: since germs didn't appear to be a challenge, it started also going after healthy tissues, as well.  

Ahh..this is the life!

I've been thinking for a while now that I need to write up an RA update, but things have been busy around here, and I just haven't had time!  Some of my "school year" commitments have subsided now that it's summertime, but warm weather also means we are traveling more and I'm spending more time outdoors, particularly working on and enjoying my yard and garden! In fact, it's so nice out that I'm out on my deck sipping on a frozen drink as I type!  Oh, right, we were talking about RA... 

I've been struggling with decreased mobility, stiffness and some pain with use in my LAWs (Little Arthritic Wrists) for some time now.  Even though they are not so inflamed and painful from rheumatoid disease as they once were, I'm suffering the results of the damage done.  At my last visit to the rheumatologist, my doctor suggesting that I try physical therapy to try to regain some functionality and range of motion in my wrists.  Even though there is already damage done, I want to get the most out of whatever my wrists have left to offer.  To be honest, I was a little bit skeptical about physical therapy because it felt like when I tried to bend my wrist the joint would simply get stuck, since there's not much room for my joints to move anymore.  Of course, that didn't keep me from being optimistic and telling my physical therapist that I wanted to be able to do a push up again!

I started physical therapy for my wrists last week, and have now been to four sessions.  I am actually pretty amazed at what we've been able to accomplish so far.  She measured how far my wrists could bend in all four directions on my first visit there.  Now, bear in mind that my first appointment was at 7:45am, so my joints hadn't had much of a chance to get moving and loosen up for the day.  However, looking at the measurements from that day versus just yesterday, there are already some big improvements -- particularly in my flexion and extension.  As an example, I think both wrists were originally in the 35-40 degree range for extension, and they've since increased to 55-60!  I've been doing stretches and exercises at home to get my joints moving, maximize the range of motion and gain strength in my wrist muscles.  When I'm at PT, my therapist will work on mobilizing each individual wrist joint.  I'll tell you what -- my wrists feel great right after she's done!  

Functionally, I'm not sure I've gained a lot yet, but my wrists do move more easily in all directions, with less pain.  The only thing I have to be careful of is not pushing myself too far.  My personality is such that I want to do the BEST that I can and see just how far I can bend my LAWs or just how much weight they can bear, etc.  But, pushing things too far will just trigger the inflammation to come back and reverse some of the progress that's been made.  So, I will do my best to keep up my range of motion and strength exercises without pushing myself to the point of pain.  I'm going down to one PT session per week now -- for who knows how many weeks.  I may not be able to do a real push-up when I'm done, but I feel pretty confident that I'll be able to do a wall push-up soon.  If I do, I'll send proof.  Wish me luck!

I had my latest rheumatology appointment last week. Overall, I would say that the appointment went very well.  I told my doctor that I had been feeling well, but that my wrists continued to be stiff, sometimes sore, weak and definitely had a very limited range of motion -- though they are far better than they were a year ago, and holding steady.  He noted some slight warmth/swelling in my right wrist, which I'm not sure I would have detected.  He ordered some new x-rays for my hands and wrists, which I was able to get done right there and then discuss with him.  I had the x-rays taken, then went back to my room and waited for the doctor to return.  

I finally decided I should request a copy of my x-rays from the doctor's office. This is one of three from last week: wrists have some damage, but fingers still look pretty good!

The x-ray images were sent to his laptop, which he pulled up and showed to me, knowing that I was interested in seeing them.  He actually took the time to explain what he saw in the x-rays -- definitely joint space narrowing, some erosions, and other irregularities -- and he pulled up some images of healthy wrists so I could see the difference.  Then, we looked up my x-rays from last time -- in December 2011 -- and compared them to now.  There was not a huge difference, which relieved me.  Plus, I was glad to see that the bones were not fused, which had been my fear.  However, my doctor made clear that he was "not happy" about the way my wrists looked.  There was a rueful tone as we discussed the damage that had been done, with no way to reverse it.  If only I had come in sooner, perhaps we might have made some treatment changes sooner and prevented some of the damage.  Hard to say, but I will let that be a lesson to myself to call my doctor when I do have even a moderate flare that lasts longer than a week or two -- especially when I have been feeling well and have ~6 months between appointments.  The Humira is still working well, so I'm staying the course for now. AND my rheumatologist ended up referring me to a physical therapist to work on increasing my range of motion in my wrists.  More on that later.

Battery powered heated slippers! They are amazing.

I did end up showing my rheumatologist the bruises on my toes and explained that they had appeared in conjunction with Raynaud's phenomenon.  He did not give a name to them, but did say that it looked like the blood vessels had burst from the Raynaud's.  He didn't seem overly concerned about it, but said we could consider putting me on Norvasc next winter.  The only issue is that I have a pretty low normal blood pressure -- so I'm not sure I want to be on something that will lower it.  I'll see what happens next year.  At least I have an amazing husband who found and bought me heated slippers!!

Lastly, my doctor ordered some blood work to check my Sed Rate, among other things.  Everything came back normal -- and my Sed Rate was a 9!! That's the lowest I have had to date!  Here's an updated look at my track record:

Click chart to view full size

I really appreciated the time my doctor spent with me on this visit and his willingness to help me get a better understanding of my own condition.  I left feeling very positive (1) that the disease was holding steady and (2) that I have a doctor who values me as a partner in my own care.

Despite the fact that I don't have any RA symptoms to show and that doctors tend to ignore the feet anyways, I do need to show my rheumatologist the bruises that are still on my toes -- that have appeared in conjunction with Raynaud's attacks.  We'll see if he thinks it's chilblains and if he has any suggestions.  They do seem to be getting better as it gets (slightly) warmer.

Beyond the feet, I do need to talk to my doctor about my wrists, as well.  If I don't take Naproxen for a while, they will begin to act up.  While they feel miles better than they did last year and they don't always appear to have active inflammation, they still only bend about 30-45 degrees and they will hurt if I put too much weight or pressure on them.  I think I will be getting new x-rays on this visit, and I need to request copies of my old ones, as well.  I'm curious to know if he can tell from the x-ray if I do have permanent damage and how things may have changed since my last x-rays a year and a half ago.  Undoubtedly, if there is damage, some of it occurred between November 2011 (when I got the x-rays) and March 2012 -- the period during which I had my worst symptoms.  I seriously doubt much has changed over the past year. There will be no way to tell for sure...but that's the impression that I get :)

This post is part of a blog carnival, prompted by RAWarrior.com -- with the subject of the carnival being, "how do you keep the disease from taking over?" Click here to read all of the entries!

We all need to have an armory, well stocked with things that help us fight this disease -- including things that protect against RA taking over our lives and getting the best of us. Yes, silliness is in my arsenal.

We know that rheumatoid arthritis attacks each person differently, and the severity and impacts of the disease can vary widely between patients.  I feel very fortunate that while my disease is moderately aggressive, it has so far been very treatable and has responded well to the treatments I've tried.  As a result, most of the time, RA hasn't severely impacted my day to day living.  On the other hand, even with well-controlled RA, there are flare ups and periods of time with more active disease, there is joint damage that has occurred, and there are days that the disease threatens to steal away part of my life and part of my joy.

As I type this, I am home sick, lying in bed.  I've never dealt well with being sick (I'm the kid who would pout and cry whenever my mom made me stay home sick from school), and I finally realized why: admitting I'm sick and deciding to stay in bed makes me feel like I've lost a battle, I've been defeated, the sickness has won.  I know that's silly, and it's important to rest when your body needs it, but it remains an internal struggle.  Imagine the struggle I faced when I was diagnosed at age 19 with rheumatoid arthritis: every day it felt like I had lost a battle.  Coming to terms with living with a chronic illness was a long process.  At first, I was devastated.  Over the years, I've learned to accept things for what they are, but when the days of despair creep up (as they always do from time to time), I've found a few things I can do to help keep my spirits up and keep the disease from taking over and getting the best of me.  I've already discussed my thoughts on "managing my rheumatoid disease" -- there are obvious things we can do to be proactive about getting proper care and treatment and to take good care of ourselves -- but when the disease threatens to take over anyways, here are some things I've found to help.


Focus on Faith
I've said it before and I'll say it again: my faith in God is what keeps me going each and every day.  Learning how to rely on God's strength instead of my own and focusing on His faithfulness helps me to get through the tough days.  Knowing that God can work good things even out of the bad helps me to keep a a proper perspective.  If I focus my attention on my disease and dwell on my symptoms, on pain, on the unknowns of my future -- it quickly leads to a downward spiral.  But, when I focus my attention on God, and his love and promises, it fills me with hope and leaves no room for worry, fear or despair.

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart." -- Hebrews 12:1-3


Do What You Can and Accept Help
Another thing that helps me to keep RA from getting the best of me, is continuing to do what I can.  This will look different for each person affected by the disease, and obviously you need to be careful not to overuse flaring joints -- but focusing on what I CAN do instead of what I CAN'T do can help me to feel better.  I can't do push-ups anymore or anything that requires more than a 30-degree bend in my wrist, but I still CAN do most of my yoga DVD -- and I CAN modify things so that they work for me.  

I call this one of my "Conquering RA" pictures -- backpacking on Isle Royale was a life dream that I was able to realize despite RA!

I've learned that some of my activities have limits, but have also learned to adapt and to ask for help when I need it.  And to rest when needed, as it will help me feel better in the long run (okay - so, maybe I'm still learning how to do this one!).  I finally learned to take a prednisone burst if I know I'm going to be doing an intensive activity -- like backpacking -- and when I'm feeling well enough to do those activities, I need to take advantage and DO them!  Cooking in the kitchen has become a greater challenge with my bad wrists, but I've been known to knead bread dough with my forearms if it comes to it, and have learned to ask my husband for help with lids and heavy things, rather than hurting myself trying it on my own.  In the end, I feel a greater sense of accomplishment and less frustration when I simply ask for help with the parts that I know I won't be able to do -- then I can focus my efforts on the parts I can do and can actually enjoy the process.


Delight in Life's Simple Joys
Finally, one of the best things I can do is to take delight in the simple things in life that bring me joy and happiness.  A chronic disease can steal a lot of things from you, but you don't have to let it get the best of you.  Spending time with loved ones and taking the time to enjoy the things you love can make a world of difference.

"I simply remember my favorite things, and then I don't feel so bad"

These are a few of my favorite things...

Playing games -- cards or board games -- with family and friends

Watching things grow in my garden

A bouquet of fresh cut flowers

Simply spending time in good conversation with loved ones

And this little piggy went "ow, ow, ow" all the way home...

This winter, I've noticed a new phenomenon that is occurring in conjunction with my Raynaud's attacks.  You can read about my discovery of Raynaud's Disease and The Mystery of the White Finger here.  It seems that over the past couple of years, it has gotten a lot worse.  Not only do my fingers and toes turn white much more often (I literally just have to step outside for my toes to turn white), it's becoming more painful, too.  Especially with this latest development.  I've started noticing what I can only call "bruises" on the bottoms of some of my toes -- most notably on my two toes that have been most affected by Raynaud's this year.

In actuality, these bruises started appearing last year, though I didn't connect it to Raynaud's at the time.  Last winter, I had joined a gym -- for a brief stint.  I thought it would be a good option to workout during the winter months.  Lo and behold, we had no winter last year, and thus I found myself ever-inclined to skip the gym in favor of doing something outdoors.  However, there was also a month or so when I was hesitant to go to the gym for another reason: I was getting sores on my toes.  I figured that it had something to do with my shoes and/or the elliptical machine I had been frequently using.  They were small, round, reddish and felt like a bruise.  Over time, they went away.

I did not rejoin the gym this year, so when the same sores started developing on my toes again, I finally made the connection to Raynaud's.  I realized that last year, every time I went to the gym, my fingers and toes would suffer a Raynaud's attack (I blame the cold floor in the room where I changed clothes).  It would typically take about 10 minutes on the elliptical before the blood would start flowing and I could begin to feel my toes again.  This year, two of my toes are almost always numb if I'm walking outside or driving -- and it's really hard to warm them up in either situation (even with the heat on full blast at my feet in the car -- my little piggies need to get out of their shoes to warm up, but I don't want to take off my shoes will driving or drive in my socks, either!).  I literally have to sit down and rub my feet or put them in warm water to bring the color back and get rid of the numbness and/or pain.  It's getting kind of ridiculous...

Anyways, back to the bruises.  I don't know what they are.  Or exactly what's causing them.  For all my Googling, the closest thing I can find is chilblains.  Some of the images I have found look similar to my toes, but others do not.  According to Mayo Clinic, chilblains "occur in response to sudden warming from cold temperatures." That would make sense with the Raynaud's.  However, chilblains are supposedly inflamed and itchy -- mine are neither.  It just feels and looks like a bruise.  I have an appointment with my rheumatologist in a few weeks, so I'll see what he thinks.  In the meantime, I'm just going to keep a close eye on things to make sure it's not getting worse and try to take good care of my poor little piggies!

Cats make good pets; peeves do not.

It has come to my attention recently that I have a few pet peeves when it comes to some of the phraseology used in regards to rheumatoid disease.  Of course, there is the obvious ever-present "a" word, and I am still hoping that more people will begin to shift away from "rheumatoid arthritis" and toward "rheumatoid disease"; but I have more.

Starting with this: managing your disease.  Especially when it's posed as a question: How are you doing at managing your rheumatoid disease? Why does this bother me so much?  I think because the disease really has a mind of its own, and there's only so much a patient can do to manage it.  Sure, we can take our medications as prescribed, be informed about our disease, tell our doctors about any new symptoms, and try our best to live healthy lifestyles.  We can move when our joints allow it, and rest our joints that are flaring.  But what if the disease progresses anyways?  Does that mean I am doing a poor job of managing it?  I feel like this puts a lot of emphasis on the responsibility of the patient when so much is outside of the patient's control.

RA is more like a roller coaster. You don't have much control -- just hang on for the ride!

We all wish we had more control.  I was actually thinking about this in the context of the media and how they like to portray rheumatoid arthritis.  For some reason, they always want to say that you can manage your symptoms by eating more healthfully or eating a special diet, or by exercising more.  They always are big on alternative treatments and things you can do to feel better without medicine.  Why?  I think it all goes back to us, as humans, wanting to have control.  We want to believe that there are things we can do to manage the disease and that if we just do the right things, we'll feel better.  Unfortunately, it's not that simple.  And I, for one, do not appreciate insinuations that if I'm hurting it's somehow my fault because I didn't do all of the right things to manage my disease.  I think we have a responsibility to work with our rheumatologists to find a treatment plan, to live healthful lives to the best of our abilities -- and that may look different for each person (see also: My Take on RA Treatments & Decisions).

Here's the other big one that bothers me: when patients fail drugs.  You don't always see it phrased this way, but it happens pretty regularly.  Here's a screen shot from the Blue Cross Blue Shield website, showing requirements for biologics:



Again, this bothers me because it sounds as if it were placing the blame on the patient -- as if the patient were a failure because the drug wasn't effective on him.  No, it's the drug the failed -- failed to provide adequate relief and failed to live up to its reputation as an effective treatment.  Okay, so maybe the patient's immune system failed to respond, but still.  Perhaps its just semantics, but it peeves me nonetheless.  I did not fail Enbrel.  I loved Enbrel.  I did everything I could to make it work for me.  But, over time, Enbrel failed me.  I guess my point is that we should be placing the emphasis on the gap in drug effectiveness.  We've come a long way in terms of new treatments, but we have a long way yet to go.

How about you?  Do you have any pet peeves when it comes to phraseology used in rheumatology or health care?

My other pet peeve: pain scales.

It's February 2nd.  Groundhog Day.  And now, Rheumatoid Awareness Day!  Today marks the first time ever that there has been a day set aside specifically to promote awareness of rheumatoid disease (previously known as rheumatoid arthritis).  The Rheumatoid Patient Foundation (RPF) announced the establishment of this day last month, and has published numerous ways that people can get involved.  This holds a special importance to me, as I was diagnosed with rheumatoid arthritis (RA) or rheumatoid disease at the age of 19, and have been living with the symptoms and treatments for it for the past 8+ years.  I am fortunate that the currently available treatments have worked pretty well for me over the years, but it has not been without its ups and downs.  You can read more about my journey with rheumatoid disease by clicking here.

There are many challenges to raising awareness of rheumatoid disease -- you can read my discussion on that here.  But a big part of what needs to be done is simply educating the public on the truth of this disease.  The term "rheumatoid arthritis" has done a huge disservice to the disease by making it sound like a type of "arthritis" (typically associated with osteoarthritis) instead of a systemic autoimmune disease that has arthritis as one of its symptoms.  What I want to do here is just share some basic facts about rheumatoid disease for those who may not know what it is.  The RPF has put together some great topline information:

•  SHARE educational and awareness images via social media: click here for a list of resources to share

•  JOIN in Twitter Chat TODAY: February 2nd at 7 p.m. EST with special guest Dr. Jeffrey Curtis, Division of Clinical Immunology and Rheumatology at University of Alabama, Birmingham.  Join the conversation on TweetChat.

•  MATCHING DONATION - Make a tax-deductible donation to the RPF between January 22 and February 5, 2013 and your gift will be doubled by Crescendo Bioscience!  Crescendo has offered a matching donation up to $10,000!  

•  GRAB Awareness Gear in the new RPF store!