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Wednesday, August 20, 2014

a game of chance

     Seems to me lately that RA is surprisingly parallel to games of chance.  As all of us who deal with it know only too well, RA seems to run in "streaks" muck like luck does for a gambler.

If you are fortunate enough to not be flaring you are on a bit of a hot streak of luck and hope it keeps on for as long as your luck holds out!  The real irony of this is that just as games of chance rely on luck there are times when RA seems just as fickle.  The single most disruptive aspect of managing a chronic disease like RA.
Despite the many options of treatment available to treat RA (or perhaps because there are so many) finding the perfect combination AND having it last the test of time has been elusive for me and for many others who suffer with RA.  I puzzle over this often and still have no answer.  
What I do know is that any chance of success seems far to random for my liking and continues to be the most frustrating part of this disease.  Thus the comparison to games of chance.  

Just as you rely on the throw of the dice to win, I often feel like I could just throw dice with the names of all the treatment options on them and the ones that turned up would be the ones I would go with and my chances would be just as good as if I took time to decide, contemplate, etc. to make the same decision!  
So my reality proves (to me at any rate) that the chaotic and uncertain nature of RA is identical to the chances gamblers take when they play their games of chance and hope to win but know full well that luck better be their friend or they are going home empty handed and waking up with no money or in the case of RA waking up to a flare and uncontrollable symptoms that may linger till the next "'lucky streak" comes along....

Monday, July 14, 2014

60 years - 60 life lessons!

      This being my 60th year of life I thought it would be interesting to share some of what I have learned over the years...enjoy! 
1) Happiness: Is a choice for the most part....decide you want it and go after it and then hang on to it by surrounding yourself with positive people in your life. It truly is a state of mind that is attainable no matter your circumstances.
2) Family: The single most crucial people in your life. They love you unconditionally and with no agenda so when they offer advice, listen, assimilate and know it comes from a place of love. 
3) Trust: Begin your relationships, whether personal or professional, from a place of trust. I want all of my relationships to begin on a positive note.
4) Gratitude: All you experience - the good, the bad, the ugly have a purpose in your life and each one deserves your appreciation for what lessons it brings you. Remember to share your appreciation with those responsible. Start each day from a place of gratitude and it will change your life.
5) Failure: Can be the best way to learn to succeed if you learn from it and make the necessary adjustments from that failure. No one who has achieved success has ever gone without failure. 
6) Success: Comes in many forms and can be measured in so many ways, not merely material things. Successes in love, work, community engagement, etc. are all possible and often go hand in hand. 
7) Flexibility: Being able to adjust to the situation and be open to ideas and new opportunities opens doors to some wonderfully satisfying experiences.
8) Pain: Although never fun and often miserable it can be a life changing and eye opening experience that deepens your appreciation for life. Pain in all forms - mental, physical, professional and personal lead to personal revelations that serve us well.
9) Honesty: A trait that I have learned to value more deeply with each passing year. I dislike anyone who is unable to be honest. I find it deeply offensive on so many levels.
10) Friendship: I have become much more selective about using this term with people I know. For me a true friend does not have to be with you day in and day out but they do know when to be. They make you laugh, cry, face your fears and your joys. They tell you the truth and help you accept it and assimilate it.
11) Acquaintances: The majority of people in your life. Nice folks to know and spend leisure time with but not the ones that you share your deepest thoughts with.
12) Alone time: I have learned to treasure time spent alone, reading, meditating, swimming, etc. It clears my mind and gives me peace and calm.
13) Pampering: I now know that personal pampering is crucial to my mental and physical health so I get massages, mani/pedis, take Tai Chi, take time for me. I am better for it. Gone are the days when I thought this a selfish endeavor. Massage is amazing therapy: I have learned in the last two decades that massage has more healing potential than many other "treatments" out there. Everyone should try it at least once.
14) Share your talents: Everyone has something to share with the world and when you do it not only do you help others you help yourself.
15) Travel: It need not be anywhere exotic or far away but a change in your environment is very rejuvenating.
16) Don't take life too seriously: I have learned to let many things that in past years would have pushed my buttons go at this point. Life is too short to let other people control you reactions. 
17) Take another look at nature: If you have not looked around and learned to appreciate your surroundings you are really missing out. I am in awe on a daily basis of the beauty of Vermont.
18) Hurt people often need your sympathy: Sometimes the people who strike out the most are the very ones who need your kind words. Offer them, you have nothing to lose and the possibility of changing another person’s life is worth it.
19) Small gestures: They make a BIG difference. Time and again I hear back from someone who I simply greeted and smiled at. You never know when that simple gesture is just the boost that someone needed to get through a tough day.
20) People come into our lives for a reason: I have learned to embrace every encounter however small and learn from it.
21) Humor is the key to happiness: Without a doubt the single most important component I appreciate in my daily life is humor. Laughter truly is the best medicine!
22) Live drama free: I go out of my way to avoid drama inducing situations these days. I no longer want to be around people who thrive on chaos and drama. I want peace and joy and calm. 
23) Lighten up: Taking life to seriously take its toll. Learn to take a breath and see the lighter side of life.
24) Perfectionism is an illusion: It is next to impossible to be perfect so why bring that stress to your life. Do your best, work hard and appreciate what you are able to achieve.
25) Giving can be so profound: Sharing your life, your charitable dollars, your time and effort brings back rewards that you never thought possible. The satisfaction is priceless.
26) Take risks: It may be hard but try to do something out of your comfort zone and see how it makes you feel. I am surprised at how often it turns out very well!
27) Saying NO is OK: Always saying yes can spread you so thin that you start to resent everything you do. Learning to prioritize so that you are doing those things you most want to and saying no to the rest is very liberating and it makes you more productive for those areas you remain engaged in.
28) Share you passions: Don't hesitate to pass along your passions to those you spend time with. You might be surprised to learn that they too share some of them with you.
29) Explore the possibilities: With determination, purpose and passion, we can accomplish great things! Take on some new and different projects.
30) Don't ignore fear: Fear can be a good barometer of what to shy away from, what to look more deeply into and what to avoid. Be sure to examine it but don't let it paralyze you either.
31) Love and be loved: Remember to open your heart to others and don't be afraid to share your deepest thoughts with those you love. It is better to be loved and lost then never to have loved at all.
32) Live in the present: Today is where you are now...enjoy it...embrace it....tomorrow is still a ways away and yesterday is gone.
33) Exercise: There is no single act more important to your health. Movement in any form, however small will make your feel better physically and mentally. Find something you love to do that involves movement and DO IT!
34) We are all one human family: We are only as strong as our weakest link and intolerance and inhumanity to one another is unacceptable and morally corrupt. 
35) Intolerance is despicable in any form: God has taught us to love one another and to help our neighbors. If we lived this philosophy our world would be a much better place.
36) Embrace the highs and lows of life: I have learned equally from my successes and failures, good health and bad, sorrows and happiness and the lessons are profound.
37) Love yourself for who you are: In todays' world of constant striving to be younger and more attractive we need to keep our perspective on what is truly important....take care of your health - mentally and physically - the rest is rather silly really.
38) Let others know all the time how much you love them: Tell your family and friends as often as you can how much you love them. 
39) Learn, learn, learn: Every day should offer new opportunities for you to learn something new. It never gets old!
40) Meditate: I like guided imagery but any form of meditation is wonderfully soothing, calming and clears the mind! Try it.
41) Try not to be judgmental: Much easier said than done but a wonderful goal to aspire to. Learning to hear both sides with an open mind is wonderful!
42) Be true to yourself: Don't let the influence of others overshadow who you are and what you want in life. 
43) Accept advice: On the flip side of #42 be wise enough to seek advice and guidance from those you admire and respect.
44) Embrace the arts: Whether it is music, movies, dance, art, etc. open your mind to its wonders.
45) Embrace sports: Watching competitive sports in all forms from individual to team to Olympic to local is so exciting.
46) Work to live don't live to work: One can be a dedicated and successful professional without letting it dominate every waking moment. You need time to decompress and enjoy other aspects of life.
47) Find ways to cope with stress and keep it to a minimum: Living means having stress but how you handle it can make the difference in living longer and more happily. There are many ways to handle stress - learn them and practice what works for you.
48) Get a pet: Sharing your life with an animal, supporting it, loving it, caring for it and enjoying their unconditional love for you is one of the greatest joys in life.
49) Respect others opinions: I am often disturbed at the way we shout our views at one another these days. Civil discourse is the best and most productive way to move forward in this world. There is no reason to not practice respect and consideration.
50) Read: Enjoying books and magazines and newspapers, etc. is crucial to staying mentally alert and intelligent.
51) Support your local communities: Without citizen involvement our towns and cities will decay....get involved and be a doer!
52) Simplify your life: The older I get the more I want things to be simpler...from my home to my work life I want to keep it simple so I can enjoy each moment.
53) Stay close to the ones you love: Jay and I fully intend to retire near our children (and someday grandchildren). To be near them in our retirement years will keep us energized and young!
54) Practice preventative health care. Not a fun topic but one that needs to be addressed. Get checkups - if something does not seem right see your doctor, dentist or other specialist. Finding something early is the key to treatment!
55) Never be afraid to say you are sorry: Being able to apologize sincerely can be the most healing thing you do in a relationship.
56) Spend time at the beach: The sand, the ocean, the sounds and smells are healing and nothing compares.
57) Spend time in the mountains: The beauty, the woods, the smells are healing and nothing compares.
58) Social networking is fun! I love Facebook and I am not afraid to admit it! I have reconnected with many old and dear friends and it has been so wonderful. I also enjoy seeing and sharing photos of trips, weddings, events, babies, etc. 
59) Nurture your love relationship: If you are married, nurture your spouse, if you are dating nurture your love...They can and should be your soul mate for life!
60) Life goes so much faster the older you get: Each day seems to disappear these days so all the more reason to do all of the above!


Thursday, July 10, 2014

Let the sun shine in!

     Here in the northeast we really treasure our summers because they come and go far too quickly.  And this past winter was an especially long and difficult one so that makes this summer an even more welcome respite!
    I love the 4 seasons and would never be content to live anywhere that did not offer that climate.  From the brisk fall days to the dog days of summer I embrace them all.  Each time the seasons change I find myself getting re-energized and eager to see the landscape change as the days of each season unfold.
     For some folks with RA (and many with osteoarthritis) weather can be a factor in our flaring.  I know many people who swear their flares are directly related to weather shifts. I have not personally found specific weather patterns to blame but I am more comfortable in the cooler temperatures than the warm and humid ones.  Which is actually funny because when I am flaring I love heat....any any form...applied directly on the joint...whether by ointment, heating pad, hot tub, etc., it cannot be hot enough.  Yet, climate wise the colder the better....go figure!  
     Many folks prefer cold applications when their joints are flaring so my advice is try them both and see what works best for you.  It may even be that some times heat is best and yet on another occasion cold does the trick.  Once again the uncertainty of RA strikes!
     To make a simple yet effective homemade heating pad get some rice and a soft sock, put the rice in the sock and microwave for about 30 seconds or until it is hot and toasty.  Apply it to the joint and enjoy!  I love these and use them all the time.  The nice thing is that the socks are soft and pliable so you can wrap them around your wrist, neck, knee, shoulder, hand, etc. and they feel wonderful!
     Getting back to letting the sun in, not only is the warmth and gentle temperature delightful but the vitamin D in sunshine is crucial for the absorption and metabolism of calcium and phosphorous, which have various functions, especially the maintenance of healthy bones.  In addition, vitamin D is an immune system regulator.  All of these vitamin D benefits are of real importance for those of us with RA! 
     Opening the doors and windows to let sun shine in to your home and work space also provides us with a sense of freedom that is tough to duplicate in any other way.  Sitting in my office, windows open, listening to the sounds of the city outside gives me a sense of life and joy that I deeply and profoundly appreciate.

    In the summer I have a screened in porch that is essentially our summer family room, giving us additional open space to enjoy the sights and sounds of summer!  It totally changes my perspective for several months of the year and I know reinvigorates me to face the challenges of RA.
     Of course my favorite place to be in the summer is on a beach...any beach anywhere....the sounds of the ocean, the breeze off the water, the sand between my toes and yes the amazing sunshine and blue skies are like weather therapy for me!  
     Sitting on the beach, with a great summer book, listening to the sea gulls,  enjoying the bright sunshine, spending time with family or all alone I am transported to a place of peace and calm that I believe has a distinct impact on the level of RA discomfort I am feeling.  Not sure why but it seems to work!  Now if I could just find a way to be there 24/7 - 365 days of the year I would be good to go!

     Finally, metaphorically, bringing sunshine into the lives of others will bring it to you too, making your life more joyous and wonderful every day!

Monday, June 16, 2014

Shouldering the burden

     It has always fascinated me just how individual RA is to each person afflicted.  Again and again I hear different stories of how it effects a person.  I can honestly say that I have yet to encounter any two people with an identical situation. 
     In much the same way it intrigues me that no two snowflakes are alike, I find the individuality of RA equally compelling.  I also think it can explain why it is so often difficult to treat a disease that presents in so many ways! That may also be partially responsible for the challenge in diagnosing it promptly.  Although we also know that the fact that it is largely a clinical diagnosis contributes to this as well.  

     These variances all weave together to make the RA "quilt" a complicated and nuanced problem.  So when one is dealing with RA as I have been for nearly 20 years now, I try to remember this when I am feeling particularly miserable for no apparent reason other than I woke up that day.  This past period of time my RA has once again reverted back to how it began with my shoulders.  I still remember when researching RA back before I was officially diagnosed, time and again it referred to the fact that in most cases it began in the hands and feet.  Not so with me.  It started in my hips and shoulders and it was months if not a year later till my hands and feet joined the party. 
     Once they did they "partied" with a vengeance and still like to "dance the night away" to this day!  To the point that I needed some major corrective surgery to my feet (which was very successful).  So you would think I would not have been surprised when the shoulders jumped back in the game and to a degree I was not. BUT...I was dreading it!  Of all the joints that get inflamed (there are over 350 in the human body) for me the shoulders are, hands down (no pun intended) the absolute most painful.  Why? well if you look at the shoulder itself and the function it plays in how we move if might explain this.
     Notice the synovium just below the capsule.  That is what gets inflamed when you flare with RA and you can see here how much that would influence all the other moving parts of the shoulder.  So when my shoulder is flaring the pain goes up and across my shoulder to my neck and back as well as down my arm into my hand.  The slightest movement is excruciating, from simply lifting a fork to eat to trying to open a car door, never mind something as "strenuous" as brushing my hair or getting dressed!  
     So, what is to be done?  One thing NOT to do is stop using the shoulder.  I know this goes against every instinct that is screaming at you to NOT move it to stop the pain.  But if you don't maintain at least a minimal level of ROM (Range of Motion) you could develop frozen shoulder which is even uglier and adds to the difficulty of treating RA shoulder issues.
          What I do when my shoulder is flaring is "help" it to move by gently using my other arm to lift it slowly and I do it throughout the flare.  That way I do not sacrifice ROM and compound the problem.  The other thing I do is apply heat.  Now some folks prefer cold but for me heat penetrates and gives me pain relief.  

     I also use a variety of ointments and creams and pain patches most with capsaicin (derived from a chili pepper) - used as an analgesic in topical ointments because of its ability to mimic a burning sensation, overwhelming the nerve endings and rendering them unable to transmit pain to the brain.  It has been used for centuries in one form or another and works very well for me in a variety of forms.  Although many fellow RA sufferers use RX medications to handle the pain, I have not personally found it to be useful long term.  I prefer to try management strategies that will last the lifetime of RA, which for most us IS our lifetime!
     As I have repeatedly mentioned here on this blog I believe swimming may be the single most beneficial "treatment" out there.  It not only soothes aching joints, but it provides the necessary exercise and movement that is so crucial to RA patients.  I cannot recommend or endorse it highly enough!
     Perhaps the most disabling part of shoulder pain is how it invades your sleep, making it difficult, if not impossible to find a restful position.  I have found that propping a pillow under my arm helps a great deal with alleviating that particular dilemma.  A rolled up towel also works and is not as bulky.  
     No matter what you do to deal with shoulder pain, make sure you address it.  Letting it linger and persist will only make the pain worse, leading to frustration and even immobility if it is not taken care of.  If you take control of your shoulder pain it will "ease the burden" in every way!

Thursday, May 1, 2014

A case of mistaken identity!

     I recently was looking over some previous blog posts and in so doing I discovered that one of the frequent issues we face with RA is what I call "reoccurring cases of mistaken identity".   Over the course of nearly 20 years I have had RA I realize that over and over I have, on many occasions, been either misdiagnosed or an issue has been falsely attributed to RA or it has been ignored.  
     For instance I noticed that I began posting about stomach issues back in 2011, three full years ago.  During that time the number of tests, suggested solutions, diagnoses, potential causes is mind blowing!  In one post I wrote in fairly certain terms, that the problem was being attributed to the many medications we take as part of our treatment plan and in my physician's opinion that was likely the culprit.  The irony of that was that the solutions only served to mask the real problem which came back with a vengeance as the years passed until finally this year we did the right test and the real issue was discovered and the surgery successfully treated it.
     One of the issues with a chronic disease is that often symptoms are masked or otherwise overlooked  because we are so wrapped up in the treatment of RA that we forget that other health issues, unrelated to RA, can happen.  That is exactly what happened with me.  I totally believed that my stomach issues were directly related to RA but they were not and the most distressing part is that it took nearly 3 years to figure that out!  Three long, uncomfortable, difficult years of feeling sick and not understanding why. 
     Why could no one figure this out?  I really think we need to be vigilant in making sure that if symptoms continue or worsen we advocate for a fresh look, more testing, or even a new doctor.  I wish I had not let this go for so long.  I do know why it happened though.  When you have a disease like RA that has so many potential side issues and accompanying secondary health problems, it is perfectly logical to attribute concerns to it.  And I don't blame my rheumatologist because he is trained and specializes in RA and so I would expect him to see that as primary cause and to make matters worse it sometimes is!
    If you stop and think about it, it makes perfect sense to wrap all of our health concerns into the neat little package of RA.  I even think we gravitate to it as do our health care providers since it IS sometimes the case and surely makes our lives easier to tie it all up in a bow and label it RA related.  
     Let's be honest, there are times when the pain, the discomfort, the fatigue and everything else is just too much to bear and we look for an easy explanation just to ease our tired minds.  When I was going through the stomach issues, I researched and researched but without the benefit of an objective professional I think I was just to immersed in the RA to see beyond it and so I would come full circle back to RA in some way or another.
     It took me reaching some level of critical mass, illness wise, to realize this could not possibly be a part of my RA. Even then, I was not certain they were not related!  Which just shows you how immersed we are in dealing with a chronic disease like RA.  I will be forever grateful to my primary care physician for seeing beyond the RA and doing the one last test (after probably 2 dozen were done over the three year period - some twice) that revealed the real issue. That test completely peeled back all the misconceptions for me and was a real moment of realization.
     That AHA moment of clarity has remained with me and will hopefully stick around so that in the future I will be able to see beyond the RA and not fall victim to that same case of "mistaken identity" again!  Now I have a new tool to add to my RA management toolbox - being able to see past the RA - and I know it will serve me well in future years.

Monday, April 14, 2014

I can stomach anything these days!

     Hard to believe I last posted on January 16th!  So much has happened since then and I am so happy to report that it is ALL positive.  Not always the case with the disease we have to manage but I am going to thoroughly enjoy sharing this news.
     When I last posted I was having some serious issues with my stomach which had been going on for years.  I had mistakenly attributed it to the RA (a mistake we make far too often) and the various medications we take.  I met with a surgeon in late January and the decision was made to do a repair on a very large hiatal hernia which he explained after viewing my Xrays was so large that 3/4 of my stomach was in my chest cavity AND it was upside down.  Relief would not happen without the surgery.  Period.  
    So I decided to move forward and the surgery was scheduled for March 11th, 2014.  Leading up to the surgery I eased off of the RA medications although the surgeon indicated it was not necessary to stop all of them since the surgery was being done laproscopically and the only suturing would be the anchoring of my stomach to the diaphragm so he felt the risk of infection was very low.  He was more concerned that stopping all of my RA medications could lead to a flare which would not be good for the overall healing necessary for full recovery.  So I met with my Rheumatologist who compromised and I went off the Xeljanz and mtx but stayed on the corticosteroid at a slightly higher dose to deal with the inflammation.  This worked great!  In the meantime when I met with my PCP he indicated that I could stop my Beta Blocker since he thought it was entirely possible that the pressure on my heart by this exceptionally large hernia could be responsible for my elevated heart rate.  Well that too proved correct.  
     I tell you this because it points out so perfectly how critical collaboration is between various medical partners when making decisions about your health.  Keeping all of them in the loop about my health profile was as important as anything else in ensuring that we made the right choices from start to finish.  
     As the weeks passed waiting for the surgery, I grew increasingly more ill in terms of my stomach.  I could eat only the very softest of foods, often only liquids, and had to eat so slowly that I had to watch the clock and wait 10 - 15 minutes between bites!  Even then, often times I would get the horrific pressure and discomfort and just have to wait till the food digested, many times hours later.  To top it off, two weeks prior to surgery I got the flu (despite getting the flu shot) and was the sickest I have been in decades.  I was out of town and had to fly home and was flat on my back for 10 days with fever, headache, sore throat, body aches, cough, etc.  What had me the most concerned as I began to feel a bit better was what if they would not do the surgery??? I still had a little cough and I was terrified they wold not allow me to get the surgery.  Thankfully, that did not happen.  Lungs were clear and so they said it was a go.
     The surgery took about 3 hours and thankfully they were able to do it laproscopically with just 6 small incisions in the abdomen.  The surgery was done at Dartmouth Hitchcock Hospital in NH by Dr. Laycock.   The repair was done including a partial wrap or Toupet and it went great. I was determined to get up and promptly as I was told that was crucial to going home the next day following surgery and so the moment I got to my room I started to walk and did so almost hourly throughout the night....I was able to belch, pass gas, go to the bathroom, swallow and had no sore throat. They started me on soft food the next day and it was great. Pain wise I did not take any narcotic medication as I don't like how I feel on it so I only had liquid Tylenol and Advil which worked fine. I had pain from the gas used to expand the chest cavity during surgery but it was minimal. I had postoperative myalgia that made my neck and shoulder painful for about a week or so but heat, a neck collar and massage helped. I had pain in my chest going to my back but that was caused by the sutures that hold my stomach to the diaphragm.  Those sutures are permanent but the pain will subside.  The pain has eased slowly but surely and will continue to do so. The surgeon told me yesterday that they had to go up under my heart to get at the entire stomach to move it and once moved there was a large space where it had been. As a result over the next several weeks/months organs that had been pushed and cramped will move back into that space and my left lung will re-expand. I already feel a significant difference, feeling the best I have felt in 4 years! I am a swimmer as I report often here and he believes that helped me to cope with the fact that essentially only one lung was working was all done with 6 laproscopic incisions all of which have healed nicely. Bottom line: I had a very serious and large para esophageal hiatal hernia and I am happy to report 4 weeks post op a totally successful outcome. It was the best decision I could have made...not only do I have no regrets, I wish I had done this years ago!
     I have to take a moment and mention how amazing my husband was all through this challenging time.  I would never have made it through all of this without his unfailing support, unselfish acts of kindness and unending love and support.  He was my nurse, my advocate, my companion and my best friend and I cannot ever begin to thank him enough.  Repayment is virtually impossible but I pledge to love him with every cell in my body for the rest of time!
     I want to also get back to something I mentioned in my first paragraph.  So often those of us with RA will skip over symptoms that should be attended to because we mistakenly think they are part of the RA.  This comes from a very logical place since quite often there IS a relationship.  That said, my situation is a perfect example of not assuming that there is always a connection.  For years we determined that my stomach issues were all part and parcel of the reflux that often accompanies RA due to the many medications I take.  Not so in this case. If you are having discomfort that goes on despite treatment, pursue other possibilities.  I waited far longer than I should have. 
     You really need to become a dog with a bone, not giving up till you get what you want and need!  I had test after test, many due to incompetence, but nonetheless I am glad I did not stop pursuing what I sensed was something more substantial than simple reflux.  It took the better part of three years to figure this out but my life was spiraling out of control health wise so no matter what it was all worth it!  
     One of the nicest and most unexpected outcomes of this is that I am off of several medications as a result of this surgery!  No more Toprol for blood pressure, no more Prevacid for reflux, no more potassium supplements, and NO MORE ANTACIDS ALL DAY LONG!  To be going off of medications has been wonderful!  I am now back on all of my RA medications, gradually reducing my corticosteroids with the goal of getting off of them completely and starting my exercising in just a few weeks.  I have really missed my swimming, biking and treadmill work.  I am also adding Tai Chi to my menu so that will be fun.  
     I am feeling like a whole new world has been opened up to me and the sense of contentment I feel fills my soul!

Thursday, January 16, 2014

Tough to stomach this....

     So after nearly a year of not knowing what was causing the pain in my chest and abdomen I finally have a conclusive answer...a Hiatal Hernia.
     It seemed that with each test I was getting farther from an answer and yet so many theories were suggested I felt like we could just pull any one of them out of a hat and be as likely to be correct.  Various medications and lifestyle changes were made and still no relief.  I was getting more and more tired, depressed, frustrated, stressed and angry.
     As all of us who deal with RA and its never ending unpredictability know, it is the unknown that confounds and disturbs us the most...this was no exception.  Test after test came back either inconclusive or negative.
     I began to wonder if it was in my head.  Was this all just stress related?  I felt like a dog chasing its tail...a horrible and depressing cycle to be trapped in.
     So once again I was seeing my physician and when he asked how I was doing with the "stomach issues" I told him still not so good but I really did not want to undergo anymore tests since they all seemed to go nowhere.  He suggested "just one more" and so I went and had a barium swallow.  
     I had this done probably 15 years ago when I first started to have reflux but at that time is really showed nothing out of the ordinary.  This time, however, it did show something...a large, in fact, very large, hiatal hernia.
     At last an answer!  What surprised me about this was I had an endoscopy as one of the many tests done in the last few months and the GI doctor said that I had a "small" hiatal hernia and it likely was not the reason for my symptoms.  So while I was in the midst of my test the radiologist said to me "so he said it was small?" to which I said yes and he smiled and said "I would not call this small, your entire stomach has slid up through the hiatus and into your chest cavity."  Well that sounded pretty scary and ominous to say the least.  
     It did however explain my symptoms...feeling uncomfortably full after just a few bites of food, a sense of pressure in my upper abdomen, bloating, not being able to eat any food that was "dense" like meat or bread.  The reflux that usually is one of the telltale signs was already controlled by my PPI medications and thankfully that was under control for the most part.  So now I can not wear a bra as the elastic is unbearable and I pretty much wear gentle elastic pants for the same reason.  Thank goodness it is winter time so that it is not very noticeable at the moment...otherwise...
     I truly want to rip open my chest sometimes the discomfort is so pronounced.  I went back to see my PCP for a followup and he told me that other than trying lifestyle changes surgical repair was the only other option and he gave me the name of the doctor he recommend I see next.  I listened carefully to him and tried to digest (pun intended) the reality that I would need yet another surgery.  

     To tell you that I had a lot on my plate at this time would be a true understatement and may account for my inability to really consider his suggestion.  First of all, I had just had a revision of my foot surgery a week before where a "loose screw" (I know I can't help but laugh at this either) was removed.
     That went great and I was doing very well.   Earlier in the year I had been told following a DXA bone scan that I had osteoporosis of the vertebrae and started on medication for that.  I had attempted to reduce my corticosteroid down to 2mg from 4mg and it was not going well.  The biologic I was on was starting to fail and my RA was flaring like nobodies business.  I had a skin outbreak that was autoimmune related.  I had three major dental procedures that were in the works.  I was having a major battle with the insurance company over coverage for the new biologic my Rheumatologist wanted me to get started on, Xeljanz.  After 4 months of trying to reduce the corticosteroid we went back to 4mg and thankfully that coupled with the increased methotrexate worked while we waited for the Xeljanz to get approved.  Of course I could not start on that till after the foot surgery anyway but finally after nearly two months they approved it.  I had also injured my back but compared to everything else that was small potatoes.  On top of all that, thanks to the back pain, the flare, and the stomach I was in no shape to exercise and that is just horrible for me, physically and mentally.  
     I think by now you are starting to put the puzzle pieces together and can see the picture here with regard to my health at this time.  Put simply I was in bad shape and so when the doctor suggested a surgical correction I just kind of tuned him out and said I needed to time to research hiatal hernia repair and wrap my head around this news.  I have not mentioned that during this time I was also very busy with my work, my son got married, my husband had surgery, the holidays were upon us with all of the work and planning that goes with them and on and on.  It was not pretty people!  
     I was a hot mess and I was not sure how to proceed.  After a few days of feeling really low, tear filled meltdowns and major pity parties, which by the way, I think are absolutely healthy and necessary on the journey back from hellish times like these, I began to slowly take stock of each issue and adopt some solutions. 
     I knew there we a number of hurdles to overcome but I slowly began to tackle them one by one.  Medication for the RA was adjusted and the RA flare began to receed.  That meant I could start my swimming again and that was a huge help.  That in turn helped my back.  Once I started back on the corticosteroid the skin condition resolved.  The dental procedures went well and were finally completed after several months.  My Rheumaolotgist told me that the osteoporosis I had was very minimal and that if it were not for the RA he probably would not have even put me on the medication and that within a year or two I would likely be able to drop that.  He also said the I had no limitations from it which was very welcome news.  My foot revision went off without a hitch and as my exrecise increased my back pain eased up.  So aside from the stomach all was getting better.  

     Now it was time to focus on the biggest challenge of all....what to do about this hiatal hernia?  I started to do some research and to say my mind was not put at ease by what I read would be an understatement.  I discovered that it is a very delicate surgery with lots of possible complications and the success rate is quite variable.  So I thought I would try to manage it with lifestyle changes, a strict diet, etc. 

     Well it simply did not work. Here I am months later and I am as miserble as before if not more so.  My life is ruled by this discomfort and I think I have to face the fact that surgery is the best option.  I have an appointment with a highly recommended surgeon in two weeks and I will make a decision after that.  Of course, as always I have a "book" of questions to ask him to help me determine if 1) I need the surgery 2) I want him to do it 3) the risks and potential complications 4) the success rate, etc.  The answers will guide my decision.
     One important note.  I do most of my research on the internet and I think many of us do.  A word of caution.  When you are researching surgery for a condition remember that oftentimes the folks that post are those who are having complicaitons, problems etc. and are looking to health forums to get anwers.  If your surgery goes well are you likely to go to a forum on that topic? probably not.  You will just move on with your life.  So temper your fear and concern with that tidbit of wisdom.
     I have also learned that I am stronger than I think somtimes and that with the love, support, care, guidance and medical knowledge that I need I can get through this just as I have the many others that proceeded it.  Next time I post I hope it is to report a successful resolution to the hiatal hernia!  I am woman hear me roar!