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Sunday, July 31, 2011

Thanks...really? You bet!

     Feeling thanks and not expressing it is like getting a gift and not unwrapping it!
     Over the last several days I have felt exactly what this image shows!  Hugs and warmth, gratitude and support wrapped up in language and words, coming from many different sources.  
     First my many new virtual friends that I have met through this blog and the different RA and chronic disease pages on Facebook and other sites.  I had no true sense of how many folks out there are experiencing the same thoughts, feelings, ups and downs, pain and so on until I started this blog and began to participate in several online RA support groups and Facebook pages.  Say what you will about FB, I have found it to be a wonderful source of joy and fun and support.  No it does not nor should it, replace face to face (no pun intended) interactions but what a great way to re-connect and in the case of my new RA friends connect for the first time!
     So what these many new connections told me was just how out of touch I was with others who have RA.  Back when I first was diagnosed I used to participate in a couple of RA Chat Groups as they were called then, even hosted one for awhile.  But as time went on and my life got busier I drifted away from it.  Fast forward to a few months ago, when I decided it was time to start an RA Support Group in my area and the rest is history.  Through that decision sprang the desire to blog and from there I have gotten involved in other online groups.  What has been so nice is discovering not only the massive number of people who are so similar to me in so many ways but also how diverse we all are at the same time.  And despite the miles and lack of physical presence, I have found that others with RA can see right through to the core of what I am going through, often better than me. It really has been a wonderful discovery and something I am just overwhelmingly thankful for!
     I also want to reflect on the wonderful folks I have the good fortune to work with every day.  I truly count them as friends, dear and treasured, as they are there day after day to support me when my body does not.  They are as committed to the work we do as anyone could ask for and I am certain that our ability to fulfill our mission as catalysts for positive change in our community is a direct result of their dedication.  They inspire me to continue my personal battle with RA and to win!
     I also want to mention the wonderful medical team that keep me moving (literally) and make dealing with RA a bearable and realistic goal.  The physicians, nurses, lab techs., etc. are all so crucial to my well-being I owe them an amazing debt of gratitude.
   I am not even sure where to begin to express my thanks to my family.  I would thank them all from the bottom of my heart but for them my heart has no bottom! They have been partners in this journey from day one.  They have never complained or expressed a single word of criticism or anger.  Their attitude has been one of hope and support and love, often lifting me up both literally and figuratively.   They give me a reason to keep on fighting, to keep on trying, in short to have hope.
     I don't want to list them all here but they all know who they are and what they have given me.  I do want and need to mention my husband.  His ongoing, never ending love and his ability to deal with all of what RA has taken from us, simply astounds me.  To say I am thankful falls so short of what I feel.  
    I love the beautiful sentiment in the photo above when I read it I knew it expressed far better than I could how my husband has supported me.                               
         The simplicity of this statement about gratitude is so on target I simply had to share it here.  There really is a depth of feeling to gratitude that goes beyond the immediate, reaching well into the past, here in the moment and forward shaping our tomorrows.  
     I also think of thanks as another way to experience hugs, which to me are the physical manifestations of appreciation...for an act of kindness, as a way of greeting or saying farewell to a person dear to you, to show support in times of sadness or joy, to express pride, to show love and of course to say THANKS!  The physical touch that a hug provides is priceless and it is good for your health.  Those of us with RA often might find hugs are a tad painful but for me no matter the discomfort, it is soooo worth it for the value of the touch!
     I have discovered that I can even experience cyber hugs and they now hold a special place in my heart now as well thanks to my many new RA online buddies!
         The bottom line here is that in this world of RA where we are often forced to focus on the the things we are not thankful for I like to take the time now and again to thank those many wonderful people who make my life so special and so joyous.  
     We need to challenge ourselves to stay grateful and appreciative for all that we have in our lives despite RA!  As always, I will not let it define or defeat me. 


Wednesday, July 27, 2011 valid are pain scales?

      Pain.  A simple 4 letter word that encompasses and wraps itself so intensely around the lives of those of us with RA that is could be our middle names. Nan Pain Hart.  Not only do we experience it daily but the degree, the actual point of pain and the duration of that pain are all so random it is enough to make us curl into the fetal position and just scream at some point.
   So with those thoughts in my head I began to consider the value of PAIN SCALES.  I think anyone who has ever had to chat with a physician about pain has had to deal with the dreaded pain scales.  What I find puzzling about this as well as elusive is exactly what it accomplishes?  If I say I am having an "8" day versus on my next visit when I am having a "7" day what exactly will that trigger the physician to do?
     I started looking at various "models" out there in preparation for writing this post and to my surprise there are so many different scales it amazed me!  Not only that, but some use numbers 1-5, some 1-10, all with different wording to "clarify", some use smiley faces, others weird images like the one below that I thought was pretty interesting.
     I would imagine that the purpose would be to determine treatment and management of the pain but as we know with RA it can change on a dime so a choice made one day may be totally ineffective the next.  Not only that but as a patient, I have some issues with treating pain as do many other folks.
     This is just a partial list of the many challenges that we encounter as we try to sort through how to deal with the pain. The priorities of these difficulties are all over the map for RA patients.  For me, I worry about adding yet another group of medications to the cocktail I am already on.  I mean at what point do they begin to offset if not totally erase the benefit as a result of their own interactions with one another?
     This is a real worry for me so I have chosen to stay away from the heavy duty pain medications.  Plus I don't feel well on them and I would like to be alert and engaged in my life which often is difficult to maintain with pain meds.  
     The few times I have had to take them I really feel like someone has covered my brain in a fog and I have no clarity of thought whatsoever.  So back to the scale.  Are they of any use at this point?
     I am really not sure unless we select one that makes the most sense for us and perhaps keep a daily or weekly "pain journal" using the scale and then share that with our physicians.  By doing that we can see over time how our medications are working or not working.  This may be another tool for us to add to our arsenal in order to determine the effectiveness of our treatments.  
     Pain treatments in and of themselves are a topic for another post but we do need to consider all the options....
     Once again it is clear to me that we must stay focused on our path to managing RA.  That includes examining the various tools used by the medical community like pain scales and deciding if they make sense for us. How can we make them serve our needs as we try to manage the daily pain that is such an all encompassing challenge for us? Focus and reflect.


Monday, July 25, 2011

TNF again and again and again.....

     As I enter into the new medicine phase once again, I cannot help but ask myself if staying in the same "family" of medications makes sense?  I have had a really difficult time finding any conclusive research that shows the efficacy differences between those using TNF (Tumor Necrosis Factor) inhibitors once or multiple times.  I finally found one study and the difference seemed fairly significant to me.  It showed that the rate improvement of symptoms (and this is defined by specific criteria) was 35% for those using TNF inhibitors more than once versus 55% for those using it for the first time.
     Just to refresh and educate, TNF inhibitors are in a class of DMARDS for RA called Biologics (they are made sythetically).  So what are TNF's and how does this anti-TNF work?  TNF is a cytokine (chemical messenger) in the body that plays a role in inflammation and tissue destruction in diseases like RA but is also important for normal function of the immune system.  
       Blocking TNF with biologically derived drugs like those pictured above, called TNF inhibitors, has proven to ease symptoms, inhibit joint destruction in RA and halt the progression of the disease.  I have tried three of the ones in the top photo and now have just started on Simponi, the newest one to enter the field.  Delivery for this group of drugs is either injection or infusion depending on the particular medication.  In total I have had 4 1/2 years of great success with Humira, no succes with Enbrel, and mild success with Remicade for 2 1/2 years.  So now I find myself starting yet another TNF inhibitor and wondering if this makes sense.  To be fair, there are some slight chemical differences in the various medications (not being a chemist I have no desire to explore this any further!) that are in this group but I am not sure if this is still just "the same old story" being re-told.
     That said, I really want to embrace this new choice and so I am trying to keep positive thoughts while suppressing my urge to find reasons why this may not work.
     I know how important mental attitude is to your health and so I am doing my very best to get with the program and accept Simponi as the solution to my RA!  Yet, time and again, the little doubts creep in....asking me what if?  what if is doesn't work?  Should I really be pursing the same type of medication?  Am I wasting valuable time during which my joints are deteriorating?  Is it time for a change?
     I think everyone with RA faces these questions on nearly a daily basis thanks to the very nature of the disease...that is its unpredictability.  To put it simply...we just don't know.  We don't know how we are going to feel when we get up in the morning.  We don't know how we will feel while we are exercising or trying to.  We don't know how the day will go and if we will be able to do what we planned.  We don't know which joints (the average adult has approx. 230) will decide to be painful and inflamed on any given day or how badly they will hurt.  We surely don't know if a medication will work since there are so many out there and often in combination with 2 or 3 or 4 other medications.  There are almost as many combination and dosage differences among RA patients as there are folks that have the disease.  That may be why there are so few studies that definitively declare if it makes sense to do a TNF again and again and again..... 
     BUT....if there is one thing that living with RA has taught me (actually there are many) it is this.  You simply have to accept that this disease IS unpredictable and understand that it is just one more challenge to be handled.
     This need not prevent you from having a joy filled, satisfying and happy life.  You simply need to adjust to the ever changing nature of RA.  Which brings me back to my decision to try Simponi, yet another TNF inhibitor.  I guess when it was all said and done I decided to give it a shot (no pun intended) since a 35% effectiveness rate might not be so bad if it works, right?  The real key here is that I decided!  I consulted with my Rheumatoligist, my family, etc. but in the end I made the final choice.  I was responsible.  Just the way I like it.

Wednesday, July 20, 2011

Mixed bag

     So there is a little of this a little of that to post today so here goes.
    First of all, my face is still numb (yuk!) but unless it is wishful thinking I believe I feel some tingling in my lip so maybe it will come back at some point!  I am staying optimistic.  Also - and this is just plain weird but I wonder if others have experienced this - I have noticed that my RA pain has decreased a bit since the oral surgery and the debacle that followed.  I wonder if my body became so preoccupied with that whole mess that it "forgot" to deal with the RA??? Kind of makes sense in a strange way, no?  I mean RA is all about an immune system that is "over reacting" so if it has to handle a new crisis....
     Our RA Support Group met again this past Monday and it was once again a wonderful chance to share, laugh, whine a bit, offer tips, etc.
Our numbers are still small and I do hope that it grows as time goes on as the folks participating are just awesome!  I try to get the word out to the various media outlets and community groups so hopefully that will pay off at some point.  Until then, we will continue to support one another!
     Speaking of support, I met with our New England regional Arthritis Foundation representative to chat about the upcoming 2nd annual Arthritis Walk here in Rutland set for Saturday, September 17th.  
It was so much fun last year and I hope that folks will turn out and walk to support this great cause.  Here is the link to my donor page and I would be honored if folks would consider supporting my efforts:

     When you go to the above link, in the left hand column select DONATE TO A PARTICIPANT and then enter my name, Nan Hart and it will take you to my donation page.
    Finally, I started my new medicine this week so I am really pleased.  The injection was a breeze....the new autoinjector that Simponi uses is such a cinch that I did not think it had worked I had so little sensation of the needle.  In fact, had it not been for the yellow indicator in the device window and the tiny speck of blood on my thigh at the injection site, I would not have known I had just injected myself!  I truly did not feel a thing.  
I actually thought maybe the numbness in my face had inadvertently spread to my leg!  It did give me an idea though....I thought if the sensation in my face does not return (God forbid) I could get all future shots in my jaw!!! I would never have to feel a shot of any kind again....what do you think?  Well, just a thought....
     So, this was an eventful and interesting week with a number of highs and not too many lows which I really like to share!  


Sunday, July 17, 2011

"Facing" the truth!

      Ok, if someone told me this I would think it was a joke...but sadly it is not.  Last Monday, (a week ago tomorrow) I had a tooth extracted.  No big deal right?  I have had it done before and I assumed this would be a normal extraction.  Plus this particular oral surgeon had  removed wisdom teeth from all three of my sons and my husbands mouths (a total of 16 teeth!) with no problems. I suppose that in hindsight I was a bit over confident and given the last several months in terms of my health a little caution was probably in order...but nonetheless I went in full of confidence and with no particular concerns at all.  
     I suppose I should have been more worried when just before I was put to sleep the surgeon looked at my xray and said "well another tooth from hell and it is only the second one of the day".  But when you are about to go into a deep, relaxing sleep you just are not that alert so off to sleep I went.  1 1/2 hours later (it was supposed to be only about 20 minutes) I "awoke" (a bit of a stretch since I was in lala land for the remainder of the day) and remember very little until after my husband and I got home and I began to feel a lot of pain in my throat, numbness in my face and swelling.  I used ice packs and drank milk shakes (the one good thing about this whole nightmare!) and the next day when I woke up and my face was still numb I was a bit worried but still thinking that things might be OK.  
     I headed into my office for what was to be a very busy day that included (I am not kidding I swear) a video taping I had to do which involved repeating phrases like SCSEP and other assorted tongue twisters.   I had mentioned in advance that this taping might be a problem since it was the day after oral surgery but since I had no problems with an extraction two years ago, I went ahead and said OK to the videographers.
  It actually went fine despite the fact that I still could not feel my entire lower left lip, the chin below that and the teeth in the lower left quadrant of my mouth.  It felt like Novocaine had just not worn off yet and yet I knew full well that it had so....I called the surgeon and they said to come in.  Now this always worries me because if it was nothing to be concerned about they would just chat with you on the phone so now I am getting a bit anxious and I still have a full day ahead of me.  
     I meet with the oral surgeon and he reiterated how difficult this extraction was, going into some detail (way more than I wanted to hear) about just how tough it was.  He concluded by saying he "nicked" a nerve most likely while "digging" for a "migrated root" and that is why I was experiencing this numbness.  He added that I have a 50/50 chance of it going away and the option otherwise which involved a neurosurgeon severing the nerve and grafting was just way more than I wanted to hear.  He said he would "call me" in two weeks to check on my situation....Can't wait for that phone call!
     So I left totally dazed and confused and now wondering what I had done in my past life or my childhood that has landed me where I find myself at the moment...RA meds. failing, body in pain, numb face, work related stressors, etc.
I then "googled" this condition and THAT was a mistake as I proceeded to read about every tooth extraction nightmare known to man!   So at some point between wanting to rip my lower face off and tears I actually began to laugh at the absurdity of it all.  
     I thought there has to be a silver lining here somewhere...right?  Well, lets see....I cannot eat much (nothing solid for awhile till the tooth site heals) so maybe I will loose some of those unwanted pounds I gained from the increased dose of corticosteriods.  I was not drooling or exhibiting a sagging face as the numbness does not seem to have effected me in that way, thankfully.  And I found that my body was so preoccupied with this new dilemma that some of the shoulder pain had gone away so that was good.  And I had a slew of jokes about this that I unleashed on anyone who would listen so that was kind of fun.  
     It suddenly dawned on me that having to handle the RA for these last 15 years has once again served me well as I have truly become a die hard positive thinker!  I simply cannot let this setback win either.  I have yet to give in to these numerous attempts by fate to get me down and this time will be no different.  I will get through this....slowly and with patience.  I hope the feeling will return to my face in time...they say it could be days, weeks, months, years or, of course, never but I will stay optimistic because the alternative is just not what I want to consider right now.  I start my new medication, Simponi, on Tuesday and I hope to report that it is working really well!
    Now if the heat here would just let up a little I would be even more positive!  92 degrees today and humid!  Hey at least I cannot feel the heat on my face!  


Sunday, July 10, 2011

To Dream the Impossible Dream!

     Remission, cure, final treatment - terms and phrases I believed could be a part of my experience with RA.  That is, until a few weeks ago when my umpteen attempt at getting off corticosteriods along with the failure of my latest biologic medication finally began to make the likelihood of any of these things "an impossible dream".
     I have been "out of sorts" for several weeks and assumed that it was all about the pain and the flare.  About the fact that exercising was once again being taken away and knowing that, for me, that is like taking away my ability to breathe. Yet, somehow I sensed there was more to it but the full thought was just out of reach....
...I just could not put my finger on why I was near tears almost daily, why I was having sad and restless sleep (beyond what was caused by the RA normally).  I felt at loose ends, unsettled, like I was in a black and white world struggling to get back to the vivid color that was my life.  All of the things that normally pulled me back to a happy and positive place just were not doing it and I was, frankly, a little scared.
     Finally, yesterday morning it all became clear...I was heading back after Zumba class, driving home, shoulders screaming, feet on fire, and yet I knew that I had really taken it easy in class, stood to the back so no one would see that I could not lift my arms or pivot.  I was so angry that I could not do what I had come to love, exercise to music.  I was so angry that, despite my adjustments and concessions, the RA was winning again.   Angry because, once again, another exercise/sport that I had selected (tennis and running before this) was going to be taken away from me.  Angry because I planned to swim today and I wondered if I could lift my arms to do it or would RA take this away as well?  What would I have left?  What would be the next thing that RA would claim from my life? I began to cry, softly at first and then sobbing to the point that I had to pull into a side street and just take a moment.  So I did.  I realized what had been eating at me for the last several weeks. 
     I had been in denial for the last 15 years.  There it is.  Denial about what you ask?  I think I believed that I would go into remission permanently OR a cure would be found.  For whatever reason - maybe the 15 year mark - maybe the fact that yet another medication failed - maybe the fact that yet another sport was being taken away - maybe all of those...I was slowly realizing that those are not going to come true for me...not now and maybe not ever....
     So when I got home my husband asked how class went and....the floodgates opened and I cried and talked and cried some more and as I articulated my realization my husband said "we will get through this together.  You are stronger than the RA and we will deal with it".  He is not one to mince words and his simple response along with hugs was just what I needed.  I know that the sadness and fear are not gone for good but at least coming to terms with what was going on emotionally for me lately makes me feel "lighter", like a small candle in a sea of dark is being lit just for me.
     It is amazing how "talking it out" helps and I am so glad that I finally shared this and was able to sort it out.  I DID go swimming today, and my husband came along.  I jogged in the water and did some mild laps but just to keep the shoulders loose, not to make them hurt.  Then the hot tub and a nice breakfast and I was feeling better and better.  I can handle this, just need to vent sometimes and validate that what I am feeling is OK.   
     Maybe, just maybe this new medication WILL work and I will feel better.  Maybe, just maybe researchers will find a cure for RA.  Maybe, just maybe.

              "Reach high - for stars lie hidden in your soul.
           Dream deep - for every dream precedes the goal."