she loves me she loves me not

     Just like this classic paradox, many of us with RA have the same love/hate relationship with the corticosteroids we often have little choice but to take to keep our RA under control.  For many of us it is the one medication that will put a halt (or at least give some measure of relief) to a flare.  Sadly there are not a lot of options that serve this purpose.

     This is one of those areas that has not come a long way in my opinion and yet it is probably one of the most critical from the standpoint of daily living and management of RA.  

     How much more important can it get when you cannot function or sleep or enjoy life when the pain of a flare takes over your life?  Yet there seems to be little useful research out there on this and sadly and certainly no viable options or substitutes for corticosteroids from my viewpoint.

     Despite some wonderful and upcoming medications in the pipeline from a DMARD (Disease Modifying Anti-Rheumatic Drug) perspective there is nothing much to report in the NSAID (non steroidal anti inflammatory drug) category...which is where we need some help!  There has not been anything new in this arena since the Cox2 inhibitors which turned out to be a bust since their proposed benefits were not what they were purported to be.  I wonder if that has not been part of why little has been done from a research perspective.  That said, the pronounced negative side effects of long term use of corticosteroids is well known and not very pretty...   I have experience with most of them including easy bruising and rash..just one of many.

    Bone loss issues are surely another one that is very serious.  So far I have not had this problem but I suspect it is just a matter of time till it becomes one.

There are many, many more negative and serious side effects.  The list is long and can be found by doing a simple web search.  Ironically there is a place for the use of corticosteroids in the treatment of RA:

     The issue comes in when one stays on it for extended periods which often happens as a result of our own adrenal gland not being able to "start up" the natural form our bodies produce after years of using the synthetic version.  That seems to be where I am at currently.  I have had RA since 1996 and over the years, used many, many medications to treat the disease.  Once the DMARDS, now biologics for me, became less effective about 10 years ago, I was unable to completely halt the use of prenisone without suffering intense flaring and all the fun components that go with it.  

     I am currently trying to get down from 4mg to 2mg and have used the method of "rocking" between 4 and 2 with a strict schedule of alternating.  The problem is that in the interim I had some work to do that meant heavy use of my wrists and shoulders and so sadly I flared really intensely and despite suffering through three weeks I could not get it to settle down without doing a burst of prednisone to get it back under control.  Not sure if it is going to work at all at this point.  No sooner do I settle on a plan to wean off of it then something comes along to make it a challenge....life...the daily kind...enters into it and makes the process almost impossible.  

Not sure where it will go at this point.  Thus the reason I so wish that more research was being done in this area.  I understand that DMARDS are often successfully blocking joint erosions but that does not take care of all the components of managing RA, particularly the pain and intensity of flaring joints.  I cannot and will not take any pain medications for a variety of reasons I have highlighted in past posts, so new and less harmful alternatives to corticosteroids is crucial and should be advocated for by everyone connected with arthritis.  We also need to make it clear to our physicians what we are going through so that they understand the complexity and seriousness of this issue.

     I remain hopeful despite my own frustrating experience that an alternative can be developed...I just hope it happens before the negative side effects become too serious.
Nan

A Chance encounter

     I had one of the most uplifting experiences of my life last week and I want to share it here on my blog because it is surprisingly tied to my RA journey.  

     I was at the pool where I do my water workouts, enjoying the solitude and physical pleasure that I derive every time I get into the water!  This time, thanks to the relative calm I am enjoying with my RA at the moment, I decided to up my workout by adding some time to my jogging and laps. I also added 5 repetitions per strength training exercise (I do about 20 different aqua strength training exercises).  All of this meant that it was a more vigorous workout than usual and the occasional sounds of exertion I made supported the intensity of the work I was doing!

     I had been alone in the pool for the first 15 minutes or so when another woman came into the pool area and after a brief glance/smile of acknowledgment to one another she entered the pool and began her own workout.  To be honest I really did not pay any attention to the woman the remainder of my time in the pool as I really enjoy my time alone and I listen to music on my waterproof MP3 player while working out.  So it came as a surprise when she entered the locker room later and as I was finishing up and getting ready to leave she said hi and said "Thank you so much for being here today.  You were a real inspiration to me!"  I said thanks but in what way?  She proceeded to tell me her story.  

     It seems her mother to whom she was very close, had passed away just a few months ago and she was really having a tough time handling her death which was quite sudden.  She had not been able to "get out of bed" for months and she was really trying hard to change that pattern. She said they had both been very physically active, ski instructors, etc. and she worked out at the gym we were both at.  She even pointed to her locker and commented on how it had been sitting there, filled with her workout gear for months, untouched, unused.  She said when she had awakened this morning she decided to come to the the gym and see if she could give it a shot.  She said she really did not expect to do much of anything but something told her to give it a try.  As she came into the pool area and entered the water she noticed that I was really working hard and as she said "I could tell that it was not easy for you and after watching you for several minutes I decided that if you could do it so could I and it worked.  Your dedication and attitude shown through in every exercise and movement and it was so motivational I cannot thank you enough.  I felt so much better when I got out of the pool knowing that I had taken that first step back.  I really believe this is the first day of the rest of my life and I have you to thank!"

     We both stood in silence, tears in our eyes, really unable to speak for a moment.  Finally I said how lovely it was to know that I had made a difference for her, even though I had no idea!  We chatted some more during which I mentioned that I had RA and as a result my workouts were a real respite for me...something I cherished as I had given up so many activities over the years because I simply could no longer do them.  Pool workouts offered me the chance to stay physically active and psychologically healthy as well.  

We exchanged names, goodbyes and said we likely would see one another again. I headed out to my car.  I have a short but lovely drive home (every drive in Vermont is beautiful!) and as I drove I began to quietly tear up again as I considered the "chance encounter" I had just had and just what it meant to me.

     Over the 17+ years of having RA I have come to accept that I have to make adjustments in many areas of my life.  Not a big deal.  Just a fact that is part of successfully managing a chronic progressive disease.  That said, changing and adjusting what I am able to do to stay physically active has been one of the areas that is the most challenging to adapt to.  I used to run, play tennis, dance, etc.  Over time I have had to give up a number of these but I have learned that it can be done!  And it can actually open up new avenues of movement and exercise that I would never have explored - like Tai Chi AND doing strength training and jogging in the water!

     The point of discussing this is twofold.  First of all it tells you the level of persistence you have to have and nurture to continue to find ways to stay active and keep moving when dealing with a disease that seems to rob you of your choices and ability to freely move.  Secondly and this is where the story comes back full circle.  Due to the fact that I have some limitations on what I can do and how well I do them, I never in my wildest dreams would have expected someone to declare that I had inspired them with my physical activity!  That fact alone was so uplifting and thrilling to me it made me feel elated for some time.  And now when I am feeling frustrated with what I cannot do, with my pain, with my limitations, with what has been taken away, I can look back on that moment, that conversation and remember that feeling of pride and joy.  I am sure it will sustain me for a long time and the hope it generates will keep me going even when the dark times find there way into my life as they surely will.

     So when you are wondering if your actions or attitude impact another person, remember that when you least expect it you may positively effect someone.  So stay open to those "chance encounters" because you just never know what joy and happiness it might reap.  Always know that the wheel of humanity is what keeps us all living a happy and successful life!

Nan

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