A real balancing act!

     So it has been nearly two months since I have posted....and the reasons are many but mostly due to the fact that I have been focused on getting back my "balance" both physically after the three surgeries (two eyes and one foot), psychologically, and of course from an RA perspective as well.  

     I have to admit I did not expect to be "gone" so long from blogging but I never intended this process to be tedious or anything other than an opportunity for me to share my thoughts, suggestions, advice and insights as I learn from my own experiences how to manage RA.  I also view it as a chance to be cathartic for my own purposes.

      I found that these last two months I have been completely preoccupied with functionality and really not ready to spend any of my energies on anything other than just getting my body back to a place that was at least approaching normal! I was a bit surprised that it took this long to get my "bearings" back....but then I have never been known for my patience when it comes to wanting my routine to resume.

     I am certain that my own need for control combined with the ever changing, always chaotic nature of RA leads to a craving for routine that is likely out of proportion with the norm.   So that said, I have been battling some mood shifts (can you say swinging from bitchy to needy to weepy) that have surely not been fun for family or friends!

       Everyone has been absolutely wonderful and I cannot begin to thank all of those who are part of my RA Support Team for their unending love and care.  There is simply no doubt in my mind that without them I would never have made the progress that I have and/or be willing to do this again for my left foot in just a few months.

                                      

     I simply don't have the proper words to express how amazing everyone has been throughout this entire process.  I love you all and you know who you are!  

    What is really amusing to me, in hindsight, are the grandiose plans I had for doing projects around the house and how completely and totally those did not happen!

     I realized pretty promptly into the recovery that my life would be primarily concerned with how to get from one end of the house to the other as opposed to reorganizing closets and cupboards.  That, as they say, will have to wait for another time.

     I also figured out that the simple act of walking is one to be treasured and never taken for granted.  For some strange reason I thought that once the surgeon gave me the go ahead to bear full weight on my foot I would be magically able to strut my stuff!

     Welllll, that has not been the way it has worked out but despite that, I think I am progressing quite well and since starting physical therapy two weeks ago I have seen a big difference! 

     I am going to spend the next post reviewing some of what I call the surgical  Keys To Success but I just wanted to take a moment with this post to say I am back and plan to post regularly again!  I am feeling the strongest I have felt in over 4 months and so as I move forward (literally and figuratively) I will keep you all posted as I prepare for my "final lap" when I get my fourth surgery in a year under my belt! 

Nan

Putting your best foot forward

      The saying "Put your best foot forward" has special significance given my recent foot surgery.  Not only will the surgery give me a better, stronger,  more stable foot but it will likely help with other RA issues.  

 As those of us with RA know, the more time goes by the less we are able to balance as well as we did pre-RA.  Add to that the inevitable aging process and balance can become a real trial. In addition, if you have foot problems like I did, your balance is even further compromised.  My doctor told me that thanks to my foot mechanics and other issues, I was essentially bearing my full weight on three toes per foot!  That in turn, effected my knees and hips, thus leading to my eventual decision to have the foot surgery.  

One of the interesting benefits of only being able to use one leg for balance is I am getting to practice (not by choice mind you) my balancing skills and I am getting really good at it!  And my left leg is going to be rock hard by the time I am able to bear weight....not a bad trade off.  Ahh the simple things in life....

I can say with certainty that when you are confined and movement is limited, the things you take for granted every day become so special.  When you figure out how to complete them, either by accommodating or adjusting your technique the level of satisfaction is like winning a race!  When I figured out how to get up to the second floor (with the expert help of my son) I was so happy!  It opened up a whole new location for me to be at while recuperating and that was so welcomed.  And I am sure that I have strengthened my arms as well thanks to the necessary additional stretching and lifting I have to do to accomplish tasks.  

     It's funny how being forced to slow down your pace, for whatever reason has the added benefit of making the simple pleasures that much more intense.  I have always loved my back porch...it is a place that feels like a screened in tree house, with birds singing all day and a wonderful view of the sun setting in the distance.  One of the best decisions I made with regard to this surgery was to do it in the early summer so I could enjoy the porch!  Add to that the visits from my friends to keep me company or enjoy a meal and I am really feeling very fortunate.

     One last effect that I think is of particular interest to anyone with RA is that since the surgery my RA has been subdued....wonderfully in the background.  I mentioned this to my Rheumatologist yesterday and he believes that when our bodies are dealing with a trauma or a situation unrelated to RA, that our immune systems respond accordingly thus granting us some well earned relief.  I have noticed this phenomenon before and it really intrigues me.  Another of the little benefits of my recent journey that was indeed welcome.

So as I wrap up my time of Don't Walk and enter back into the world of walking I will try to retain my newfound joy in the simple things and not let the fast pace of life overtake that discovery.

Nan

Expect the unexpected

     I am happy to say that foot reconstructive surgery number 1 is complete!  PHEW!  Glad to be able to say that.  It has been nearly three weeks and my foot is doing great so that is the really wonderful news and what I am really pleased to be able to share. 

     I have learned a great deal from this experience not the least of which is that it has been quite the roller coaster ride!  Just like the unexpected drop offs as you make your way through a roller coaster, the aftermath of the surgery has been filled with some really interesting (can you say pains in the butt?) challenges that despite my almost obsessive planning were not even on the radar!

     On the one hand I stocked up on enough dry goods supplies to take care of my entire neighborhood in the event of a natural disaster.  So I had that covered.  What I did not expect, despite knowing that there would be a number of bumps in the road, were some other items I will go over here in the hopes that it might make for a smoother path for others coping with surgery as well as for my next one.

     First and foremost I did not expect that my foot would do so well and that other "side effects" would be the challenge. For instance, I have never been one to take pain medication other than Tylenol now and then.  Now I remember why....I HATED the way it made me feel!  I was so happy to get off of it I cannot tell you.  Thanks to a nerve block given just prior to surgery I literally had no pain to speak of.  The nerve block lasted nearly 36 hours and so by the time it wore off the pain was inconsequential.  However, the very well-meaning folks at the hospital really drill into your head the need to "stay ahead of the pain".  So despite not having any, I still believed I needed to take the medication to break the pain cycle before it took hold.  

What I did not know was the charming side effects of the pain medication....dizziness, disorientation, constipation that was horrific and on and on.  In my zeal to follow the rules I think I overdid my desire to follow through to the point that I did not stop to consider if maybe a slight adjustment might make sense.  That would have helped to avoid some of the annoying side effects.
                                    
I am now officially a lover of adjustments and will try to move from my previous attachment to rigidly following the rules to the point of absurdity.  The next little hurdle I encountered involved overdoing it while ON the pain meds. Not being one who has had that experience in the past yet being a person who craves personal independence, I came home and despite having two wonderful caregivers (my husband and my son) I still did far too much far too quickly. I have this awesome device, a knee walker that is my absolute lifeline.

I use it to get EVERYWHERE and since I cannot weight bear at all on my foot it is my sole link to independence.  I would highly recommend it to anyone having foot surgery that will require no weight bearing.  That said, I did not fully understand that my body would need some time to adjust to how I move on it;  how I get it up over small floor lips, etc.  I tended to simply "dead lift" the front end which meant my back did all the work...well, three days in and now weaning off of the pain meds. and my back was not happy....in fact it was in full revolt with tendons and ligaments in total spasm!

So now my foot is still not in any pain, yet I have had a reaction to pain meds., constipation, and now a back that is screaming at me!  I began using ice on it, my family gave me massages, I actually went to a massage therapist, and sleeping was not going well at this point.
     Next up was my first follow up appointment with the surgeon and that went great...he was very pleased with the healing and the incisions looked good.  They removed 17 stitches, some I felt nothing, some stung pretty bad but all in all it was fine.  I was fitted with a boot to protect my foot and told to wear it to sleep, shower, etc. 

As you can see it is quite the boot!  Looks and feels like a ski boot and weighs about as much as well.  So that night sleeping with the boot and trying to adjust to a bad back...not a pretty night in my house.  The next morning we took off the boot and to our dismay my ankle was swollen and purple and very sore.  We quickly put ice on it and then called the surgeon's nurse to see what to do.  She started by saying "well, you don't sleep with boot on or take a shower with it on, just wear it for protection as needed."  We explained that was not what the orthopedic technician told us (all three of us heard the same instructions so it was not just me in my pain filled state of mind) and that we got no WRITTEN instructions as to the use of the boot.  

At any rate, she said just to take care of it and all should be well.... Easy for them to say.. ..I was not a happy camper at this point because remember my foot is FINE but all the other "stuff" is becoming increasingly annoying!  

Not to get off topic but I have to mention at this point that if not for the care and support of my son and husband and the visits and cards and food, etc. from my friends I would have been a raving maniac by this time.  That constant companion of a support team has once again proved beyond measure its importance in recovery for anyone who has any medical issues to handle.  They have kept me together just like a puzzle!

So a few days later I notice that the center incision is "leaking" some orange thin liquid and so my son calls the nurse to make sure that we are not in need of a visit to ensure that this is not an infection starting.  She assured us that this is not unusual and to just dab it off and keep an eye to make sure that it does not become pus filled, red, etc. or if I begin to run a fever.  That, thankfully, as of today, has not happened so I am hoping that we have truly turned the corner on this one and the ups and downs may
now be leveling off.

One really important recommendation I will make beyond what I have mentioned already is that I have developed a "tip sheet" for future surgeries (I am doing the left foot in about 6 months).  It is already a full page in length and contains a lot of useful information.   The unique thing about this type of surgery is the fact that getting around is a huge consideration.  For instance I knew that you were supposed to take pain medication after you eat but my son (who just recently had surgery on a broken leg) told me that eating just after taking the pill is also critical and will really relieve any nausea.  So knowing I could not get up and run downstairs to get some food in the middle of the night when my alarm would go off indicating a need for another dose, we made a peanut and butter and jelly sandwich and cut it into 4 squares so that I could eat one before and after the medication and that lasted both times during the night that I had to medicate. 

  I will post my "tip sheet" in a later blog just so that folks can see the kind of little things you can do to make your life run more smoothly and with a lot less stress while recovering.  I am confident that the next time around I will be better prepared to handle the unexpected and if something unexpected happens I will hopefully be better suited to cope with it!

Nan

patience - not my strong suit

     So here I am one week till I have my first foot "reconstructed" and I am having some issues controlling my impatience with both the wait and the anticipation of what will come after the surgery.  Patience has never been a virtue of mine so that is making it doubly difficult to deal with.            

     I have to confess that one of the "symptoms" of not having any patience with this waiting game is an almost constant feeling of butterflies in my stomach at the mere thought of the upcoming surgery.  

     I am trying to make a resolution with myself to adopt a good attitude about both this pre-surgery waiting game and even more importantly, afterward.  I believe that there are some strategies that one can utilize that might facilitate this process so I am going to share them here as tools for others who may have to deal with any number of treatments, surgeries or procedures as they manage their RA.

     First and foremost, plan ahead! I have a checklist of items that I have been gradually completing that will make the time leading up a lot less stressful.  For instance, I now have enough paper towels and toilet paper in my house to provide a small army with the necessary paper products for a month!  

     I am doing any and all household goods shopping as much in advance as possible so that I will not need to call a friend some afternoon when my husband is at work and say "could you bring me some toliet paper?"....not going to happen!  Stocking up on food that won't spoil is another thing I have been doing.  

     Keeping the house and yard in shape is also a good idea so that when I come home I am not faced with a messy, cluttered environment.  I know I will be able to recuperate in a much more relaxed fashion in a neat, clean home.

      Making sure all of your prescriptions are filled is another one.  I plan to get all of those that I can filled early next week so that is off my mind for awhile.  The last thing I want is to come home and discover that I don't have the necessary medications.

     One of the most important items I have taken care of PRIOR to my surgery is having the necessary medical equipment on hand at home so that I am not caught off guard and unable to be as mobile as possible as soon as possible.  With that in mind I now have a walker with wheels, a knee walker, ergonomic forearm crutches (in red no less), crutch pads for the traditional crutches I will get at the hospital to come home, a shower chair, memory foam foot rest pillows, and a few other items all of which are designed to make my recovery go smoothly and with as little stress as possible.  

     Without a doubt the single most important factor in a smooth transition and positive healing experience is the ever crucial Support Team that I so often reference.  I have made arrangements for different family members to come stay and help out so all of the burden does not fall on my husband.  Friends have offered to help with meals and shopping and I will tap into those offers if need be. 

     I have also made arrangements to work remotely and have even scheduled some meetings for "my back porch" so that I will not be out of touch and/or go stir crazy!  I have gotten anything I could do in advance done so that I do not have deadlines looming when I get home from the hospital.  I am gradually bringing home files and other items I will need to accomplish this and that is giving me a lot more confidence that I can manage this.

    In order to stay sane while being confined for 6-8 weeks I have also planned to do some easy projects around the house.  For instance I have gotten some new hanging jewelry organizers and I intend to go through and sort my jewelry which is currently stacked helter-skelter in various containers on my dresser in my bedroom.  I also plan to clean out some of my kitchen cupboards.  

     I think working on these projects will not only keep me from dying of boredom but will also keep my mind off of the amount of time remaining till I can be more mobile again.  Of all the challenges I face, this one is perhaps the biggest hurdle and brings me full circle back to my original issue of impatience.  There is a direct link between my impatience with this whole process and worrying about the 8 weeks I am restricted mobility wise.  

     I tend to move at the speed of light despite my RA - maybe even because of it - and the stiffness that is ever present if I stay stationary too long.  I rarely sit any length of time...a movie taxes my patience to sit...so the thought of not being able to jump up and move around without restriction makes my heart race and nearly brings on a panic attack!  Truthfully the pain aspect of the recovery is not anywhere nearly as daunting a prospect to me as the whole "stuck at home for 8 weeks" notion.  I have managed pain for 15+ years now and if there is one thing I am confident of it is my ability to deal with the pain of the surgery.  

     So in the end if I am able to incorporate most if not all of the strategies I have outlined I think it will help me to be more patient and in the end make this whole surgical process less stressful, more positive and perhaps even enhance the healing so that I can get back to moving and functioning even better than before!  That is my ultimate goal and if you are facing surgery down the road these tips can help you too!

Nan

The time for pampering has arrived!

     There comes a time when one realizes that some serious self pampering needs to happen.  That time has come for me.  Having just wrapped up the two eye surgeries and with my first foot surgery looming ahead, I knew the time had come for some spoiling!  And so, a vacation that I had carefully planned for during this time period will commence shortly.

I intend to take full advantage of my time off to relax, unwind, renew and "leave my troubles behind" for a bit.  When you suffer from a chronic disease like RA - that need to step back and pamper yourself becomes a real necessity and another tool for managing RA.  So much of our time and effort is devoted to the day to day (sometimes hour to hour) demands of management of the disease that we do not stop to consider that doing some things "out of the box" to cope and ease our symptoms may be called for!  

     One example for me is massage....not only is it therapeutic physically but it takes me to a wonderful place of peace and calm mentally.  I never really appreciated massage or even understood its amazing benefits till adulthood which I really regret.

Now with the benefit of hindsight, I would have started getting massages as a teen!  The ambiance of the massage itself is enough to take my stress level down several notches right off the bat!

Combine that with the soothing music, the healing power of the touch and you have really given yourself a wonderful gift.  I have friends who simply cannot fathom having someone else massage or touch their bodies and I felt that way at one time...but thankfully I decided to be a bit daring and I have never looked back.  It is very professional and entirely in line with my own modesty so that I do not feel at all uncomfortable.  
     Another real treat is a mani/pedi (manicure/pedicure) and/or a facial.

Once again, indulging in some "me" time is so beneficial to anyone, but in particular, to those of us who suffer from chronic pain.  Having someone gently care for my hands and feet and face is incredibly pleasant!  Not only that but for many of us with serious hand mobility issues, it is a matter of having the ability to take care of our hands and feet properly and in a way that allows us some dignity and an appearance we can feel good about instead of hiding our feet and hands!  

They may not be "conventionally" beautiful but they sure feel it after a pedi/mani and that is half the battle!  Taking the time to just pause and let someone else take care of you is so satisfying and it makes you feel valued and treasured and that is priceless!

     I also really look forward to my once a month hair appointment.  The stylist I go to makes me feel like a queen when I am there!  She totally pampers me from start to finish and that is just another one of those ways to give yourself a treat.  We deserve it!

     I also am a firm believer that exercise (and for me that means swimming) is, in fact, a way to pamper yourself.  Taking the time to get moving in a way you enjoy will give you tremendous satisfaction!

     So my message here is clear....yet another tool to managing RA is PAMPERING!  I do it.  So should you!  Talk to you when I get from my vacation!
Nan