Rock and roll

     So now that my right foot is close to normal in size and shape, I decided it was time to start carefully looking at shoe options!  Did you say shopping??? YIPEE!  Only problem was it was told to me in no uncertain terms that my "new" foot would require that I make some specific choices when it came to selecting shoes now and in the future.

      Gone were the days of being able to wear whatever shoe I wanted no matter the style, heel or toe.  Truth be told the days had passed not too long after my RA entered my life.  Within a few years, certain shoes became tools of torture that I am sure were used during the Inquisition.  

     Over the years my choices were reduced to large shapeless boots like Uggs, slip on crocs, or flip flops.  That pretty much sums up my options in the last several years.  

     I adapted pretty well and in fact still plan to wear these shoes a lot!  They are so comfortable and when my feet are tired or achy they are perfect.  Were they good for my feet?  Probably not...but when your feet are in pain the main goal is to reduce that pain if you plan to keep moving at all.  So in the end my closet had more shoes on the floor than most local shoe stores and the sad part is that over time most could no longer be worn....

     ...but that did not stop me on my quest to find shoes that would work with my arthritic and severely misshapen feet.  In my demented state of certainty that there was indeed a shoe out there just for me, I spent far too much time and money.  

     In the end I came back to the old standards. The shoes I purchased in my deluded state would either be returned or buried beneath the mountain of unworn shoes that lived in my closet.  

     Until you have experienced the difficulty of walking on feet in the throes of an RA flare you truly have no idea what it is like.

     To call it pain is far too simple and to be honest I can think of a different 4 letter word that I would prefer to use when trying to express my foot discomfort!  All of this, explains why, among many reasons, I chose to have foot reconstruction surgery done in June of 2012 (about 4 months ago).  

     So now that I have a new foot, and another to follow in January, 2013, I am determined to start anew in my quest for the perfect shoes...of all kind...for working out, for casual, dress, work, etc.  

     To that end I have begun the acquisition (can you say shopping?) process and to my delight have found some great brands, styles and types of shoes!  

     To get back to the title of this post, I was told by my surgeon and rheumatologist that I needed to get relatively stiff soled shoes that had a "rocker sole" to prevent me from going "off toe" when I walk.  This because now that I have had the arthrodesis (fusion) of the great toe and ostectomy of the 4 small toes they do not want me to under any circumstances put repeated weight on the forefoot.  That meant having to adjust to "walking off" my midfoot which took some time but has been easier than it sounds given practice, practice, practice.  

     So after 8 solid weeks of healing, PT and practice I can now wear several pairs of new shoes!  One type I highly recommend are the shape up type sneakers that are out 

there such as Skechers. 

     These work great for me to walk around in and I actually have started doing the treadmill again, which my doctors did not think I would be able to do.....yea, right.....

    Another great brand I just discovered is called MBT and they make all types of shoes.  I just got the dress pump in tan and black patent and they are so comfortable!

I also wanted a casual shoe that would work with slacks and jeans so I picked up these recently.  This particular brand is called Aetrex. They come in other colors as well.

     As you can see one thing they all have in common is the rocker sole to that I roll off the heal and midfoot and apply no pressure to the toes.  I often get mine on Amazon which is my absolute favorite place to shop!  I have also just found a site, Footwear, etc. that has an entire section called Wellness shoes that is just awesome...brand after brand of shoes that will work for folks with foot issues.  I am so excited that I found them.  I am now a true "rock and roll" star!

                                 

     I have just BEGUN to gather my updated shoe collection which I am sure will enjoy its newly expanded space in my closet as I got rid of the old ones to make way for the new! Of course my trusty Uggs, Crocs, and flip flops will still get plenty of use!  

     Their are several take aways from this post as to RA management. One - you can come back from surgery better  and stronger than before so don't hesitate...focus on the outcome.  Two - learn to ADAPT...that is the key to success with RA and will continue to be if you are to successfully manage it.  Three - don't just accept the challenge, embrace it and you can have fun with it...look at me now, a real Rock Star Diva who plans to "rock and roll" the night away!

  Nan

Checking off, checking in, checking up

     I have come to realize of late how important my habit of making lists really is to my well being!  I have always been a strong proponent for making lists - grocery lists, to do lists, deadlines list, birthday lists, book reading lists, etc.  It has really served me well over the years both professionally and personally.  
     In terms of RA, I always take a list of questions for my appointments with whatever medical person I am seeing.  Of late, that group has grown to include the surgeon who did my foot reconstruction and the physical therapist who helped me to re-learn how to walk with an altered gait in addition to my ever present rheumatologist and PCP.  

     Little did I know that the habit I had formed as a youngster of making a list of all my homework assignments and household chores to do would pay off so profoundly as an adult with a chronic disease that required ongoing management!  This "best practice" has truly proven to be not only a time saver, which in itself makes it worth the effort, but it pays off in other ways as well.

     First of all, it lowers the stress often associated with going to an appointment by eliminating one of the items we often take up when we are with our medical support team....i.e. questions about why are there, new information we want to share, medication changes, symptom concerns, etc.  Having it all written out and ready to go means you can focus on other things about the appointment like getting there on time, staying calm and so on.  And if you are wondering if doctors and other medical folks like you to bring a list...the answer is yes they do!  I have asked virtually every one of them if it is OK with them and they ALL have said it is not only fine but they appreciate the advance planning on my part.  They also know that having those questions means a more efficient appointment and a much lower likelihood of "unfinished business" later which often results in the patient calling back to the doctors office or scheduling another appointment because we forgot to ask a very important question! 

     Believe me, I do not have a spotless record when it comes to bringing lists....many is the time that for one reason or another I simply did not bring it.  That said, it happens less and less frequently these days.  I like to think it is because I am so wise I now know that it is crucial to my well being but most likely the reason is more trivial than that...probably because those of us with chronic conditions spend so much of our time dealing with medical personnel it has become a good habit!  

     As we all know going for all of the various appointments has its own set of stressors and if you can reduce one on your own it makes such good sense!  Knowing I have my trusty list with me that I have been adding to for weeks, means I can let go of the worry of remembering to ask everything.  It really is one of those instances of a small action making a huge difference.  

     Another reason I so endorse list making is that it makes me a more efficient person in all areas of my life because it means I don' t have the burden of trying to remember things!  The older I get the more I appreciate that.  I have said many times in my life - if I had to choose whether to loose my wallet or my calendar (where all my lists "live") I would choose to loose my wallet.  I can replace all the items in my wallet but to try to remember all the items on my calendar would be a nightmare from which I would never awaken!  Lists mean that my mind is free to carry on with my day to day life.  I know you have had one of those times (sometimes in the middle of a good sleep) when you think of something you need to add to your list or just remember to do and you decide not to disturb your rest and the next morning it is gone from your mind and you wish so much you had gotten up and written it down.

        That all by itself would make this a good habit to start!  I also find that I derive a lot of satisfaction from "checking off" items on my to do list!  It really adds a sense of accomplishment and gives me a nice boost to see that list shrinking.   I list out chores, work tasks, deadlines, etc. and as I complete one I check it off with a flourish!

     One list that is of particular value to me since the RA, is my travel list.  Since I now have to make sure I bring all the necessary items for managing my RA while away, it is more important than ever to make that list and check it twice!   Medications, braces, ointments, etc. all need to be part of the packing and although you would think that over time you would not need to be reminded, the truth is that we do.  I know you have arrived at a destination and realized you forgot your _____(fill in the blank).  

     Just a couple of weeks ago, I arrived at my hotel only to discover that I had forgotten my pajamas!  Thankfully I was in a place where I could walk to the downtown and pick up a pair of warm ups and a t-shirt (I think I may have secretly forgotten in order to do some shopping)...just kidding :)

The point is, it was a quick two day trip and I DID NOT go over my travel list foolishly thinking I was all set.  Now in this case, it was not a big deal but...if this had been a case of forgotten medications it would have made for a much less comfortable trip!

     My latest list was the Surgery Tips list I made following my foot surgery in June.  I now have a nearly two page list of tips that I will carefully review before my other foot is done in January, 2013.  It is full of all kinds of reminders and suggestions that will make this next surgery go more smoothly and leave no questions unanswered this time around.

     I don't think there is such a thing as too many lists!  By utilizing lists in your daily life you will find that it makes your day go more smoothly, with a lot less stress, greater efficiency, leaving no questions unanswered, a less cluttered mind and a happier attitude towards life!

     Let the listing begin!

Nan  

Out to lunch

     This pretty much describes where I have been in the last few months, figuratively speaking of course which is why I have just not been "up to" blogging.  Today I am feeling a real need to share where I have been and where I am at and I am going to reflect on how RA is a big part of (but not the only) reason. So as you read along keep that in the back of your mind.  Between a busy work load, the usual (and unusual) physical demands of RA, a number of surgeries and other stresses, I have not been on my game at all in the last few months.

     In fact I would have to say that I have been functioning at about half speed which for me is not always a bad thing but in this case, it has left me feeling very low energy as well and THAT is not a good thing.  I am discovering that low energy for whatever reason is very unnerving...

     ...for one thing it brought it along with it the side effect of  not having the motivation to do things that normally give me a nice warm feeling of accomplishment - like putting out my fall/Halloween decorations...didn't happen this year.  Why? I am not sure except to say that I had a lot of excuses and in retrospect I think it all came down to simply not feeling up to doing anything that was not necessary to getting through each day.  This is not an altogether new situation for me but this time it seems to have hung on a lot longer than in the past...a lot longer...like a gum on a shoe you just can't get off type longer...

leading to a sense of paralysis when it comes to moving beyond this state I found myself in...a state that makes it far more difficult to get the pendulum swinging in the right direction. 

     But in the last few days I can feel myself slowly emerging from this "slump" and I am feeling relieved, and cautiously optimistic that I am finally heading down a less prickly path  than the one I have been traveling on the last several months.

     I have begun to think ahead and plan again...something that had taken a back seat in the last several months.  I normally like to plan things out but during this "slump" I was just not up to it...in fact I put things off that I would normally have done far in advance.  This is just one example of a number of ways that I knew that I was not in a good place and I was not sure how to improve the situation.  I found myself being very self critical which has always been a bit of an issue but one I could control and with the help of positive self talk could often overcome.  Not this time.    

I was literally "beating myself up" at every turn and it was not only making me miserable but I was slipping into a funk that was becoming more and more difficult to climb out of!

The hole was getting deeper and I was getting weaker and less motivated to change my fate.  I wish I could pinpoint how and why things began to shift to a more positive outlook but I really am not sure why and when or how or even if it will last which is REALLY what makes me feel unsettled.   Not know why things began to turn around is not a problem as long as the outcome is good....but what concerns me is that without having a handle on why I have no reason to think it won't happen again and perhaps with even greater longevity than it had this time...and that is worrisome.  

 So I have been reflecting on that in the past several weeks and I think there are some reasons why and since I believe there is, as is often the case, at least a partial relationship to RA.

When you have a chronic disease like RA it takes energy beyond anything you can imagine to cope, manage, survive, thrive and simply live a meaningful and satisfying life.  Sound dramatic?  I used to think so too and so I think I often pushed this aside.  I have had RA for over 15 years and yet it still can pack a punch both physically and psychologically that can literally "knock me out".

Yep that's me on the ground, pretty much how the way I was feeling the last few months.  I could not find the energy, the will, the strength to get "up off the mat" and keep fighting.  Thankfully that has changed but again, why?  I have to wonder if this is just another of the charming aspects of RA.  We already know that it is very "spontaneous" when it comes to painful physical flares so it is not much of a stretch to think that it can also do the same thing when it comes to energy, mood and the overall sense of well being that is so crucial to our satisfaction with life in general.  

I had three surgeries in a fairly short time frame and afterward between the recovery (which took a lot longer than a person with my patience can tolerate, despite it being all good!) my RA began to appear with a "renewed sense of purpose" that included bouts of low grade fever, malaise, fatigue and the ever present joint pain and discomfort that seemed like a sick game of tag as it moved from joint to joint.  As always, I took steps to "correct" these issues as much as possible....up the prednisone, rest the joints, try to rest, take it easy, etc.  At the time, I assumed that I would be able to "counter the punches" but this time they really did a number on me...weight gain...again...sleeplessness...again ...low self esteem...again...feeling lonley, isolated, unable to enjoy much...again...but this time it hung on...and on...and on...and I began to get worried as I just could not get myself out of the cycle that was spiraling into tears and sadness on almost a daily basis.  What to do?  Not sure why or when but at some point I simply got up one morning and began to take some small steps to try to see if I could turn the corner to a better place. 

I began to think about some simple, small, relatively easy things I could reintroduce that might work...so that day I went back to doing my food journal to see if I could "check in" with my eating habits.  I resolved to do this for at least one week and see where I was at.  A few days later, after getting my final release from both my foot surgeon and the PT's I started to do the treadmill again...the first time in nearly three years!  It felt so good.  I talked at length with my Rheumatoligist about the current state of my RA and we came up with some new strategies to get things back under control. And on it went....every couple of days I tried to make a positive change, sometimes very small ones, that helped me to feel more positive and like I was heading in the right direction again.  I was finally starting to emerge from this rather dark and lonely place.

I think the mistake I make, and it can so easily happen with a chronic health condition that has times of respite, is believing somewhere in my deepest soul that it will just "go away" some day...that I will simply wake up and it will be gone....that I will be able to do all the things I did before RA came, uninvited, into my life.  That may be the biggest revelation to me.  Despite my brain knowing full well that this would not happen, I held on somewhere in my heart to that hope.  Is that necessarily bad?  I don't think so...as long as we understand that to deal with the realities of a chronic health condition we have to do what needs to be done...every day in every way or it will swallow us up.  I will not give up aspiring to having as normal and healthy a life as possible.  That is, frankly, what keeps me going.  But I do need to stop and reflect now and then on where I am at.  That means checking in with that RA Support Team as well as myself to ensure that I am on the right track.  I sure have found out how easy it is to get derailed!

I want to stay on track and moving forward and hopefully self-reflection and the many other "tools" for RA management will give me what I need.  I will be having my second (and final) foot surgery in January and I especially needed to get my current state of mind in a good place so that 2013 starts off on the "right foot" and with a balanced approach to managing my RA!

Nan