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

Different yet the same....

     Just like these coffee cups are all the same, they still have their own unique color and that pretty much sums up my experience with the 4 surgical experiences (two eye and two foot) I had over the last 9 months.

     I am 2 short weeks away (March 5th) from being able to fully weight bear on my foot following the surgery in January!  I am so happy to be at this point I am almost giddy with excitement.  I feel like I have come out of a tunnel into the light of day...

     I truly had not realized until this fourth and final surgery within 9 months was completed, just how heavy the mental burden was knowing after each procedure, whether for eye or foot, that there was yet another one waiting in the wings.

     But when I had the last "major" part of this final foot surgery completed I felt a sense of relief and elation that I had not known in a long time.  The foot surgery itself was over, the stitches out, the pins out, the 4 weeks of non weight bearing completed and now I am, for the remaining two weeks, able to partially weight bear and use forearm crutches. YEEHA!  
     Of course the fact that all of the surgeries were totally successful is as much a part of my joy as the relief that it is behind me.  I am thrilled that the eye lens implants as well as the 2 foot reconstructions are now a part of my medical history and not my medical future!

     I have been asked a number of times if the second foot surgery was easier or harder or different or any combination of those?  The fact is that one was done in the summer and the other in the midst of winter (in Vermont).  You might think that the one in the summer would be the easier for obvious reasons. First of all because the second was simply the last one that was a key factor I had not anticipated.  I believe wholeheartedly that despite how well things went overall the first time around, I knew in my mind as each stage passed that I would be doing it again in a few short months and that weighed more heavily than I imagined. I think it colored my overall sense of the whole surgical experience.  Secondly, I learned SO MUCH from the first surgery..what to do and what not to do...and that led me to create a "Tip Sheet" which was 2 pages long and had everything on it from how to prepare to shower to what to eat before and after pain medication!  It was invaluable and made the second time around go more smoothly.  

     I have also realized that as glad as I am to have these surgeries done, I would not advise doing 4 procedures in 9 months.  I think it was more trying than I realized when I first set the plan in motion.  Frankly, just preparing for the care and work arrangements for 4 separate periods of time was exhausting let alone the actual event itself.  And, of course, life goes on while you are recovering which means that you either miss out or your adapt and participate and/or attend with some limitations or you stay home...not an option I liked at all.  That said, I probably pushed myself a bit more than was wise the first time around.  This time I was a bit kinder to myself which made for a better overall experience.

     Something of key importance which was distinctly different from one foot surgery to the next was my level of fitness and stamina which was far more significant than I imagined.

     The first time around with my foot surgery I had not been able to do my normal fitness routines because I had just had two eye procedures 4 weeks apart that precluded my ability to swim or doing any strenuous activity until the eyes fully healed.  So I entered into that surgery with 8 weeks of very little activity.  In contrast, I worked out fully right up until my second foot surgery so my fitness level was distinctly better...thus so was my stamina when I came home.  I cannot tell you how important that was to my recovery, both physically but equally as important, mentally.

     I slept better and more restfully, I had energy to get all the work done I had planned on and then some and I did not make poor food choices which I think was because, among other things, I felt stronger and more content from the moment I got home from the surgery.
     So in the end, despite the fact that both foot surgeries were virtually identical they were, for me, distinctly different experiences and that is a lesson I will carry with me as I make my way down the RA path.

Nan

     

Mission Accomplished

     Indeed my mission has been accomplished!  Both eyes have new implants, cataracts gone.  Both feet have been rebuilt successfully.  Today I had my 30+ stitches removed 11 days post op on the left foot and all is well!

There are two screws that will stay permanently fusing the joint just below the big toe - this procedure is called arthrodesis of the big toe.  The 4 pins (or pearls as I call them) will be removed in about 2 weeks.  This procedure is called ostectomy.  I got a gander of the xray of the pins and how far in they go and it was pretty amazing. I have no pain and no sensation of them being there which is awesome.

   

     This time around all the things under my control went much more smoothly thanks to the Tip Sheet I compiled last time.  It was filled with tips about everything from the type of ice bag to use to what to eat before and after pain meds.  I cannot say enough about the value of this.  Not only for the practical reasons of having a written record but also the psychological benefit of having so much written down that it   gave me a great sense of relief and stress reduction.

     So once the stitches were out they re wrapped it with gauze and put on steri strips and an ace bandage and now it is safely protected till I return in two weeks for the pin removal. 

     One big difference this time was the boot I am using which is drastically different than the last one....

     This is the last one...total overkill for a forefront foot procedure and this thing was so cumbersome it was very uncomfortable to say the least.  I ended up with a swollen and bruised ankle after just one day so I switched on my own to a boot shoe I had worn for a stress fracture I had on the top of my foot several years ago. I cannot tell you how much better it worked!

Last time, I took it with me for my next follow up appt. with the surgeon and he said it was fine to use, especially since I use the knee walker versus crutches which is much safer in terms of the likelihood of accidentally putting any weight on the foot.

     You can see in the photo above how heavy and cumbersome the old boot was, hanging off the scooter and creating more problems than it would solve.  It felt like a ski boot!

     The day of surgery started out a bit negatively as my surgery was delayed by 4 hours due to an emergency.  That made for a very long day but it went fine.  In addition, this time, instead of the nerve block from the knee down (with two injections sites) they chose to do it in the ankle (7 injection sites).  It hurt a WHOLE LOT MORE but worse the block only lasted 12 hours this time versus 2 days the last time!  Not sure I would even suggest it to anyone since I had a general anyway.

     My biggest issue, and this was true the last time as well, is my reaction (aversion) to pain medication.  This is nothing new.  I have said here on blog many times that I do not use prescription pain medication to manage my RA.  I use Tylenol, the various DMARDS, ice, heat, braces, hot tubs, etc. I simply cannot tolerate the way I feel on pain meds.  Once again, and I was on the smallest dose of 5mg., I felt like a person who was in the midst of a "bad drunk", nauseous, dizzy, disoriented, emmotional and worst of all it did nothing for the pain!  That said, I took a total of 5 and then said, NO MORE and switched to super strength (650mg) Tylenol which worked fine and soon I was back to normal.  

                                                               

          The real key for me was rest, ice and elevation of the foot.  That really controls the pain and swelling and makes the entire recovery go much more smoothly.  I cannot say enough about how critical it is to have your RA Support Team around throughout the process both to help on a personal note but also to act as your advocate and support person when dealing with the entire surgical team and hospital staff.  That really can make the difference in ensuring a successful and stress free procedure.  Friends dropped off food and that was so wonderfully appreciated by both me and my husband!

I am forever grateful to my husband who was my rock of Gibraltor throughout these surgeries!  He was literally at my beck and call, taking such good care of all of my needs and taking me out almost every day so I did not get cabin fever! I am blessed beyond words to have such a wonderful husband and best friend!  

Nan

Twice is nice!

     So it is finally here!  Monday (in three days) is my second foot reconstruction surgery.  Yes, I am doing it again!  I knew from the moment I committed to have the first one done that I would have the other done within a year.  No question, no discussion. 

     I felt that I was only half finished when I had my right foot done last June.  I said to someone the other day it would be like carrying twins and giving birth to one, knowing that the other one was due to be born.  I have to be honest,  I am not thrilled with going through the surgery, post op, recovery and rehab but I know full well that in order to have this process completed it has to happen.  I have to simply DO IT!

   No putting it off, no excuses.  The time has come and I am ready...I guess....No matter how well prepared I am I am still finding myself getting anxious.  Mostly I am not looking forward to the confinement of the 8 week recovery, 4 of which involve no weight bearing on my foot at all.  

     As is true for many of us with RA, crutches are not an option so that means I had to come up with another alternative or sit for 4-8 weeks...not an option if you know me...so instead I got a wonderful device...a knee walker.  I credit this "scooter" with keeping me sane!

     I intend to make good use of this once again and will be calling upon family and friends to take me on some excursions.  The biggest difference this time around is that my last surgery was in the summer and this one will be the middle of winter in Vermont.  Right now we have about 18 inches of snow on the ground and today it was 12 degrees.  Last time we had sunshine, 80 degrees and I had a screened in back porch to enjoy while recuperating.  So I suspect that my ability to go out and about will not be as easy as the last time....

      That said, I also will not be looking longingly outside wishing I could go for a walk. I will be perfectly happy to sit by the fire while the snow flies and the temperature falls.  It will be interesting to compare the two experiences afterward.  As similar as they seem to be I am certain there will be circumstances unique to each surgery.

     I partially base this on the fact that last spring, in consecutive months, I had eye lens implants done to correct cataracts that had formed prematurely thanks to prednisone.  Each experience was different from the moment I arrived at the hospital.  The recovery was very similar but actual surgery was different so I expect that to happen again this time.  I guess we will see....I do feel much better prepared this time around thanks to a couple of things I did which I would highly suggest other folks consider if they are having surgical procedures done.

     I made sure to write a "tip sheet" filled with items to help me get through this a second time.  I updated it, added to it, adjusted it, etc. until it was all set to be used for this procedure.  I have everything on it from what to eat before taking pain meds. to the use of kinesio tape to help reduce swelling.  I actually feel better each time I review it.  It is like having a How To manual and it really does give me a true sense of comfort.

     In some respects having to manage RA for 15+ years has given me the confidence to tackle this with the same deliberate approach that I have used for so many years to deal with the ups and downs and uncertainties of RA.  Not unlike the "RA Toolbelt" I so often reference in my blog, having surgery requires its own unique set of "tools" to get through this experience.

     I believe I am as ready as I can be.  There was much to do to get prepared...from work related tasks to something as simple as making sure we had enough water and paper products to last a month!  I tend to be a bit of an "over organizer" so I may have covered a few extra bases but since that gives me some degree of calm I am OK with it.  
     My goal through all of these surgeries was to have them done before my 60th birthday which is still over a year away so I am pleased to be achieving that!  In addition, my son is getting married next August and I want to be able to dance all night at his wedding and now I will be able to, God willing....

Nan