Change of plans

     One of the many aspects of dealing with a chronic disease like Rheumatoid Arthritis centers around the need to be able to change plans on a dime.  Being able to be flexible, and I don't mean physically :), is crucial to successfully managing RA.

   It is totally possible to learn how to be flexible and it is a very necessary and helpful tool to acquire when dealing with chronic disease.  Without it, you tend to not only end up filled with stress and tension but you also are potentially loosing some options that might allow you to move forward with your management of RA.  Understanding that Plan A may NOT be the best choice is very critical!

     Case in point for me....prior to agreeing to and eventually having both feet surgically rebuilt (successfully I might add) I dragged my feet (no pun intended) about getting it done as I continued to follow Plan A which was deal with the pain, the lack of mobility instead of having the surgery.  Once I was WILLING to seriously consider Plan B (the surgery) I could then objectively examine the pros and cons to see which course was the best one to take.

      There is nothing wrong and everything to gain to use this approach across the board when making decisions about any of the issues we face with RA.  That goes for choices of treatment, exercise options, social gatherings, chores, etc.  You name it, you can use this approach.  It really is a systematic way to sort through what can be some serious challenges.

     Having dealt with RA for 17+ years now, I can say with certainty (and there is very little certain about RA) that approaching the management of a chronic disease systematically can really help to ease that level of uncertainty we often associate with RA.  That is one way to handle change that makes it a lot less stressful because YOU are taking control and that always feels better than the alternative.

     When you climb that hill of alternatives, it is a very liberating feeling to know that you have a degree of control over what happens to you and what choices you can and will make.   Anytime you are able to calmly, systematically and rationally examine the possibilities before you, you are much more likely to make the best possible decision at that point in time.  

     And that brings me to another really important aspect of this concept.  It is absolutely crucial that as part of this entire assessment process you are willing to revisit decisions you made to see if you need to change your course of action. Circumstances change as I said at the top of this post and with that in mind, something you were certain of a month ago may now need to be completely re-examined to see where you are at now.  What, if anything, has changed?  How might that change your decisions from then to now?  Important questions and all part of the systematic approach to disease management that includes embracing change.

       Finally the one thing all of these ideas have in common is ADAPTABILITY.  We must be able to, as I said, "change on a dime" if we are to successfully manage RA.  Being willing and able to adapt to the ever shifting nature of chronic disease is, arguably, the most important tool you can add to your toolbox!   

 Nan    

     

the New Normal

     It has really become apparent to me through these many years of chronic disease management that normal is just not ever going to be an easily attainable option for anyone with RA.  I used to think that "getting back to normal" simply meant I would get back into some routine way of functioning.  

     Truth be told, it really is not that simple for those of us managing chronic disease.  I believe that is largely due to the fact that "normal" is not easily defined for us...it is an ever changing target that moves around as often as the wind blows.

     I can honestly say that what is "normal" to me now would seem totally out of the ordinary not long ago and that both concerns and intrigues me.
     Once again I believe the craving for normalcy arises from the fact that RA is so erratic and unpredictable that we are always searching for that little piece of sameness in our lives to keep us grounded and provide some sense of security.

     Like Linus, we need to feel some sense of stability.  A chronic disease with its ups and downs really is counter to this entire concept. RA tends to make us feel like the ground is always shifting...unnerving to be sure!

     So, knowing that, how best can we compensate for this lack of normal?  Well, I believe we have to individually find our own New Normal and embrace it!

     How to do that is the challenge.  It is a process not easily undertaken but well worth the effort!  First you must fully understand and acknowledge that normal as you once knew it is a thing of the past.  Done. Finished.  

     Next you need to relinquish the desire to attain 100% constancy in your life.  Once you do it is rather liberating.  Difficult nonetheless and something I still struggle with but I remind myself every day that what I am able to do today is the best it will be in that moment so move forward with your day with a sense of joy and calm and it does make RA much more manageable.   

     There is also a need to reflect regularly on just where you are at in terms of your goals for managing your RA.  I recently had a great visit with my Rheumatologist which is partly what prompted this post.  He and I revisited a number of topics we have gone over in the past from corticosteroid use to the possibility of switching DMARD medications.  We agreed that there is a definite need to do this even if it seems like the same ground is being covered.  I think that is because what was normal to me even 6 months ago is likely entirely different now!  That was a real revelation to me.  I have a New Normal and it will likely change again and again over time....and that is OK!

     Feeling secure and whole again is really the goal of understanding what normal is and embracing that concept will go a long way in allowing us to settle in and feel as safe and secure as we possibly can within the boundaries of chronic disease.

Nan
      

The many myths of RA

     When someone is first confronted with the diagnosis of Rheumatoid Arthritis, it can be one of the most confusing and challenging times of your life.  The news of having to live with a disease characterized by chronic pain as well as the myriad of other health issues associated with RA is overwhelming to say the least.

     So to try to sort through all of the information and ascertain what is true, what is false, what is relevant, what is not, can be a task not easily undertaken.  It is, nonetheless, critical to successfully managing RA, that you separate fact from fiction and myth from reality.

     That is one of the most critical tools you can use to manage your RA not only day to day but also in terms of planning for your future with a chronic disease.   Researching the realities of RA is just one way you can take control of what often seems like an out of control disease!

     I know for me, heading to my computer and the local library was a God send when I was first diagnosed 17 years ago.  I felt that I needed to learn all I could about RA before I made any decisions about treatment, my future, my ability to continue to do certain activities and on and on.  I wish had known of the many myths that surround this disease.  So, that said, I am going to share some with you for you to digest and learn about.

   1)  Rheumatoid arthritis is the same as osteoarthritis.  It is not and yet nearly everyone you meet or encounter will think it is so it is up to you to correct that misconception or move on.  RA tends to hit people at a much younger age, especially when you factor in JRA (Juvenile Rheumatoid Arthritis now referred to as Juvenile Idiopathic Arthritis) while OA is often related to aging. There are hundreds of chart and image comparisons that you can review...here are two charts that I like (one short and sweet the other a bit more in depth).

I also like this image of a joint.  It gives a good graphic comparison of the effect of RA versus OA.

     This may well be one of the first, initial myths that you have to handle and it will likely persist throughout your life as each person you meet and share your diagnosis with will need to be informed - or not - the choice is yours.

2. RA effects everyone the same way.  So not true!  In all of my years of meeting folks with RA, and I would guess that number exceeds a thousand, no two people have the same exact experience.

From symptoms, to treatments, to how you cope and how the disease manifests, the differences are countless.  To suggest otherwise ignores one of the most challenging aspects of RA - and that is the total lack of regularity and predictability with this disease.

3.  You don't "look" sick so RA must not be that bad of a disease.   Just because you may not appear to be sick or in pain does not mean that you are not.  RA often is a "hidden" disease, with pain and fatigue our constant companion even when we look just fine.  

As you go through the years, RA patients tend to get better and better at hiding their symptoms and not letting others see their pain for fear of being treated differently or losing jobs, friends, a social life, etc.  Or simply our ability to handle pain and our threshold to do so rises over time. That does not mean we are pain free, symptom free or disease free.

4.  You should wait until you have x-ray proof of joint erosion before starting treatment.  In years past, physicians treating RA would often wait until joint erosions showed on x-rays and/or there was a positive RA factor in the blood to start on the "heavy hitter" medications or DMARDS (Disease Modifying Anti Rheumatic Drugs) such as the relatively new  class of drugs called biologics.  

Studies have now conclusively shown that early aggressive treatment not only slows or prevents erosions but can bring about remission heretofore not even a possibility.  

5.  Exercise is not good for if you have RA and the flip side that exercise can totally relieve symptoms.  Exercise and movement are critical to maintaining muscle tone, range of motion in your joints and to relieve the depression that often accompanies a chronic disease like RA.  I prefer swimming and any form of aquatic exercise as it is joint neutral and actually relieves pain for me.

In addition, it aids in sleep.  On the other hand, the type, amount and frequency of exercise should be carefully planned and monitored to ensure that you do not trigger a flare or make it worse.  Too much exercise is not the answer and can do more harm than good.  

6.  Living in a hot, dry climate and/or diet can cure or relieve your RA.  According to the NIH and other experts in the field of Rheumatology, neither climate nor diet can effectively change your RA.

7. RA symptoms are not treatable and the disease will eventually lead to disability.  There are more options available today than ever before to treat RA.  The good news is that they can prevent joint damage, thus delaying or preventing any disability and relieving many of the nasty symptoms of RA from pain, swelling, inflammation, fatigue and a myriad of other systemic problems that can arise from RA.  

Working with your physician and a team of experts is the key to managing RA and ensuring that you make the right medical decisions for you.

8.  You can handle this on your own.  I saved this one for last because in my mind this may be the single most important one to dispel.  Do not for one moment think that "toughing it out" on your own is the right approach.  IT IS NOT!  Put aside your pride and need to be independent because in the case of chronic disease management you need to let them go if you have any hope of successfully managing your RA.

Understanding and embracing your Support Team is arguably the single most crucial piece of the the chronic disease management puzzle.  Without them, their knowledge and support you will struggle.  End of story.
     So finally, by dispelling and understanding the myths surrounding RA you can separate fact from fiction and better manage your RA.

And once you have achieved that, you will be better able to move through life with joy, peace and a strong sense of how to successfully navigate through your disease journey with a sense of happiness and hope.

Nan

What a pain in the neck!

          One of the least talked about but most painful and intrusive side effects of RA is neck pain, often responsible for subsequent headaches as well.  I believe I had neck pain long before my RA was even diagnosed and yet I do believe it was an early marker of the disease that was just entering my life.

     I can clearly remember several months before I really began to manifest more definitive signs of RA, that my neck was stiff, painful and tight much of the time.  I now believe that it was just the beginning of what would become a journey with a chronic and painful disease.   

     The challenge, of course, is how to deal with it and not let the pain and discomfort derail your ability to handle your RA.  As with all aspects of chronic disease, there are tools we can acquire and include in our RA Tool Box to help us manage this too!  

     I have found that stretching exercises when done regularly (and that is probably the biggest challenge) and correctly can be the key to relief and even prevent further issues.  There are a number of great links to sites that show a variety of great exercises...here is one of my favorites.

http://tranquilitycs.wordpress.com/2008/08/25/three-simple-neck-stretches-to-relieve-neck-pain-and-stress/

One of the reasons I like this site is that there are excellent illustrations that accompany the descriptions and I find them very useful.  I tend to be a visual learner so good visual diagrams are most appreciated!

     In addition to stretching exercises, many experts recommend strength training for increasing mobility in your neck, back and shoulders.

     If you are in good enough condition to do them on land then by all means go for it and carefully select those that will accommodate your RA.  If like me, however, you cannot do them on land thanks to hand/wrist/shoulder issues then aqua strength training is great!  

     These are the exact ones I use and the reason is in the grip.  As you can see you simply slide your hand in one side and through the other so that you don't need to have a hearty grip to keep them in your hands.  This means I can do my strength training even when my hands are flaring!  Beyond that, I am able to do many more repetitions and sets in the water since it is joint neutral with no stress or pain to your joints while doing it.  I now do 20 different exercises and repeat each one 15 times for really good overall strength training workout.  I also do some of my neck exercises in the water as well.

      Another very useful tool is therapeutic massage.  I am a huge proponent of massage for any type of pain but in addition it is a proven stress reliever and that is one of the many causes of neck pain.  So it is a win/win situation to get a great massage from a reputable therapist who knows how to work with people with RA and chronic pain.

     I have found that at least a once a month massage makes a big difference, not only physically, but also mentally.  So often we "carry" stress in our necks so if you are tense or anxious, which many times accompanies RA and other chronic pain conditions, this may well manifest as tight neck muscles which then means pain...and more pain..often spreading out to shoulders, back and head.  Which brings me to yet another dilemma I have been dealing with of late.  HEADACHES!  

     I am not certain that my headaches are entirely related to RA but I know they can be.  This site examines some of the links between neck pain, headaches and RA and offers some great ideas to relieve them.

http://www.everydayhealth.com/rheumatoid-arthritis/when-rheumatoid-arthritis-gives-you-a-headache.aspx

In addition there are some useful tips to responding to RA headaches such as:

• Question your RA treatment. If you’ve taken Tylenol several days in a row and your headache is sticking around, you might want to talk to your rheumatologist to make sure that it’s not a side effect of your treatment or a new symptom (especially if you suspect that your shoulders or neck might be affected by rheumatoid arthritis).
• Consider your stress level. One possible reason that people with complicated health problems like RA also have headaches is stress. Stress management techniques, including appropriate exercise, deep breathing, or meditation, can help cut back on headaches as well.
• Stay hydrated. Independent of RA, you can get headaches if you don’t drink enough fluids during the day. You probably know how important it is to care for yourself, but even the most dedicated patient can forget to drink water when life gets busy.
• Get enough sleep. People who don't get high-quality sleep may also experience more headaches. Because RA pain can interfere with sleep, it may also contribute to headache pain. If you are having a hard time sleeping, let your doctor know. Likewise, any caffeine you may be relying on to get over fatigue can also contribute to headaches.
• Avoid cigarette smoke. For some people, smoking and being around secondhand smoke can trigger headaches — yet one more reason to avoid cigarettes and secondhand smoke exposure! 

    I personally have found some additional tools that work for me.  One of them is guided imagery.  There are many CD's on the market but without a doubt my favorite is Belleruth Naparstek.

     If I can get to a quiet, comfortable setting just as the headache begins, guided imagery, more often than not, will provide me with significant relief if not prevent it entirely.

She also has others that are wonderful including ones for arthritis, wellness, stress, etc.  They are all fantastic!

     Another strategy for me is an old fashioned but nonetheless surefire reliever, a cold cloth or ice pack AND drink lots of water!

     If the moment pain starts I place a cold cloth on my forehead or temples AND drink lots of water, I find it to be very helpful as the headache takes hold, often reducing the degree of pain and the length of the headache itself.   The key is to get to it promptly and not try to be a hero and keep on trying to "work through the pain".  That never works for me and just adds to the stress.

     One thing you may have noticed as you have read through this blog is that I have not mentioned medications.  That in no way means you should not consider them if you and your doctor believe that is the best alternative.  I offer other options here as much for their preventative value as for the fact that we are so inundated with medications for RA I wanted to present some alternatives to add to your ever growing RA Toolbox.  So not just when, but also BEFORE, you get that next headache and/or neck pain, try some of these tips and see if it does not work for you!

Nan

Crossing the finish line!

     So I can now state with certainty that I have crossed the finish line for the four surgeries I scheduled and had over the last year!  I say that with a combination of joy, relief and excitement.

     I truly did not realize how much better this last round would go until it was all over and the sense of relief washed over me like a clean shower.   I actually believe that it sped up my recovery and healing for this second foot surgery which was certainly a welcome and unexpected outcome.

     I never even remotely thought that the third and final surgery of the year would bring with it such a profound sense of joy upon completion.  It really pointed out to me how much we store in our subconscious.  As much as I was happy with each successive surgery thoughout the year I believe that the knowledge that there still remained future surgeries influenced my sense of happiness and satisfaction.  Little did I know what a sense of "completion" I would feel when all four surgeries were done!  

     Which brings to mind how important it is to carry through with other components of RA management.  Medication decisions, exercise plans, discussions with your Rhematologist, etc. may all seem like they are only continuous or ongoing but the fact is, they have various finish lines along your RA journey.

     Each time you set up an appointment and go to it you have crossed a finish line.  When you set up an exercise plan and implement it, you have crossed a finish line.  When you develop and begin medications you have crossed a finish line.  And by so doing, you have accomplished something really significant and important and crucial in successfully managing your RA.  

     For me, this was a year of amazing accomplishment that when I look back on it, I am both proud and really satisfied and I will look to it as I move through the managment of RA as a strong reference point and a guideline for the future.

Nan