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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!


Tuesday, November 5, 2013

Hidden behind door number 1....

     I find myself often reflecting of late on why it is that so many of us with chronic diseases like RA tend to push away confronting challenges and emotions that we face as a direct result of our illness.  At a recent RA support group meeting I found myself coming face to face (or door to door) with this exact predicament. 
     I think it is can be traced once again to the unpredictability of RA and our constant desire to have a day that goes EXACTLY as we planned...meaning no pain, no unexpected symptoms.  I have been facing a full frontal three (maybe even four) pronged attack lately.
     My flaring that has been going strong since decreasing my corticosteroid to 2MG in August is still raging...shoulders and wrists and hands.  Not a day, not one single day has been without pain in several months....and added to that is back pain which I never had before and am completely unsure why it has joined the party. Is that wearing me down?  More than I realized.
     Number two on the hit list is my continuous and still to be determined stomach/digestive issues.  Test after test have revealed lots of things I DON'T have but no answers....eating is an ordeal and this has been going on with little relief for 6 months.
     Finally I recently found out I have surprise really given all the risk factors I have.  I am now on Fosamax, reluctantly.  Will be having a lengthy discussion with my Rheumatologist at our next visit on all of these issues to see what are options are. 
     Oh and I forgot to mention that although my foot surgeries went well I do have to have one of the screws removed from the left one next month as it is rubbing painfully against my shoes to the point I am limited to one type of shoe at the moment.

     So you are probably wondering what all of this has to do with pushing away emotions.  I have come to realize that  often times in order to not completely devolve into depression and self pity I kind of "keep the door closed" as a strategy to keep on going.  It is so much easier to ignore than acknowledge....but...that begins to wear on us and eventually we have to open the door a crack and see what might emerge....

     Last night at our RA Support Group I "opened that door" a crack and thanks to the wonderfully supportive folks who share RA I was able to let the some of those feelings/fears/anger emerge.  It was tremendously validating.  

     I had been "keeping that door locked" for months in the hopes it would magically get "cleaned out" but the truth is that is not going to happen.....I needed to share my frustration, my concerns, my anger...
     I began to throw open lots of doors and it felt very liberating to not hold it all in.  Many of us with RA are so conscious of not wanting to vent or burden friends and family with a constant refrain of the pain and problems we face that we bury them deep inside.  Not a good idea!  The hugs, both literally and figuratively, that I got from my fellow RA Support group members were more healing than any medications or other treatments have been for months!
     They let me know that now that those "doors" have been flung open I can take the time to rest...body and mind....what a gift..


Wednesday, October 30, 2013

Second Guessing

     There is a nasty habit that often comes along with a chronic disease such as RA and it is pervasive and difficult to break if carried on for too long!  Second guessing is second nature to those of us who have to cope with the ups and downs and uncertainties of RA.  It is a disease that by its very nature instills doubt around every corner...
     No sooner do we think we have it all figured out in terms of treatments, medications, workload, lifestyle adjustments, exercising, diet, etc. and comes the doubt.  Controlling doubt and second guessing is a tool you need to add to the ever enlarging RA toolbox!
     Where does it come from?  I think it stems from the fact that RA is so unpredictable that it keeps us off balance just trying to achieve some sense of stability and routine.  Flares seem to come from nowhere, striking without warning.  That very fact makes us hesitant to go forward with decisions that could mean pain, sleeplessness, lack of mobility, decreased quality of life and on and on.  Sometimes it just seems easier and even more sensible to not make any choices rather then risk making one that could bring on a dreaded flare.
     I find myself not being as decisive as I prided myself on being for so many years.  And I know the root of that is firmly entrenched in the pain, etc. that could result in making the wrong one - be it a new treatment possibility, a new exercise option, a new job, whatever.  I am loathe to make changes these days and find myself second guessing every choice I face.  What I do know it that I need to break that cycle if I am to continue to successfully manage RA.  
     The truth is that second guessing CAN be a good way to examine all the many options we face in our management of RA.  Perhaps it is not only good but necessary to question the choices, the decisions, the options and then make an informed but distinct decision.  The trick is to not let it get too extreme....
     We need to learn  that trusting that our years of dealing with RA and its many facets will serve us well as we make choices.   Tap into the years of experience that we all bring to the table instead of shying away from it.
     Often our instincts will guide us as we journey through this process of decision making relative to RA management.  Learning to trust those instincts is yet another valuable tool to add to our arsenal. 
     Another pitfall to avoid is the "what if" scenario.  When I was facing my foot surgeries, I found myself going through this thought process for a bit...I had to stop myself and decide that I knew what I wanted to achieve and that this was the logical and best solution. Going through that process helped me to be more confident and I believe even made the healing process more efficient.
     It is so easy in these situations to begin to focus on the potential negative outcomes and loose sight of the more likely positive results.   The old Coulda, Woulda, Shoulda is a dangerous path to follow.

     That is when it behooves us to list all of the reasons for making a specific choice and counter that with the reasons to not go forward with a decision.  In that way you have done a thoughtful and considered examination of the facts and you will be much more likely to be able to handle the outcomes no matter what. 

     Knowing when to stop the second guessing process is a whole different matter and takes a degree of experience before you are really able to do so with regularity.  The pitfall of thinking TOO much is that you create problems that are so unlikely they are not worth considering.  And to consider them too much breeds more doubt and confusion.

     Questioning for the sake of questioning is not healthy or beneficial.  It should always have a purpose, a time frame and a final decision at the end of the process.  In that way you are in control of the second guessing so that in the end you are the master of your destiny and as much as possible in control of RA and not the other way around!