Greetings! I'm back from an amazing adventure traveling through India and Nepal--an adventure I almost backed out of because I was so afraid that I would flare up while far away from home. I wish I could tell you that I was totally symptom free and recommend that everyone with a chronic invisible illness take a long vacation to maintain optimum health, but that wasn't the case. I can tell you that there was a noted decrease (in some cases an absence) of some symptoms I have been struggling with and it has prompted some immediate changes in my life moving forward.
First of all, I decided that I wouldn't eat any meat on this trip. This was primarily due to the fact that our trip leader was/is a vegetarian, as was our guide. I am sensitive to the fact that people who don't eat meat may be very sensitive to the smell of meat, and I intended to make meal time a social experience. I have found that I have become somewhat reclusive since my diagnosis, and resolved this was something I needed to change. Anyway, I had absolutely no acid reflux issues at all in spite of the spicy food I consumed. Initially, I did not miss the meat at all, but, by the end of the trip I was craving chicken in the worse way. Since my return, I have eaten meat, but, I would say about 90% less than I used to and have continued to be acid free.
Secondly, I had very little joint pain, which was very surprising to me as we were constantly on the move. I attributed this to the increase in the amount of tumeric I was consuming on a daily basis. In addition to the 1000 mg I continued to take in capsule form, tumeric is a staple ingredient of many of the dishes prepared in India. Upon my return I have increased the dosage to 1500 mg. I have noted some mild joint pain in my toes and ankles, so I am considering boosting the dosage to 2000 mg and/or including tumeric as an ingredient when I prepare meals.
Thirdly, I recognized that I need to increase the amount of physical activity I do daily. I realized that could handle a lot more activity than I thought I could, but was reminded of the importance making sure that the activities I chose are low impact. I had been toying around with the idea of doing some yoga for quite some time. I came face to face with the idea again when I discovered by roomate was an avid yogi. I have been easing into it and and I believe it has helped decrease the intensity of my calf spasms.
There were some symptoms that I could do nothing about, mainly the fatigue and the spasms of the trapezius muscles. I also couldn't totally beat insomnia, but I did get more undisturbed sleep than I have in a very long time. There are a couple of other things I won't mention here, but, the main point I'd like you to take from this post is that I have returned home with renewed hope that I will eventually beat these conditions that have wrecked havoc on my body for so many years.
Jim Blank & Barbara Callanan of the Long Island Celiacs Disease Support group.
I recently read an article that resonated with me so strongly that I feel obligated to share it with all of you. The article, NASCAR Legend’s Chronic Pain Led to Suicide, is the story of Dick Trickle, an incredible man, who in spite of all his efforts, was unable to find any relief to what ailed him. This sad story serves as a true reminder of the impact pain can have on your life.
Dick Trickle, by all accounts was a kind, hard-working man. I don't know much about race car driving, but his accomplishments in the field are quite impressive. His brother Chuck, is quoted as saying his brother "never was sad," and never uttered a curse word. Chuck Trickle also indicated that he knew his brother's pain was at its worst because "some words that came out last week that were not very good."
Pain can definitely take you out of character. I cannot say that I know what Mr. Trickle was feeling, or even that I understood the level of pain he was in, as everyone's pain is different. I can say that pain, in varied levels, is a part of my daily life, and the frustration that comes with not knowing its source can imprison you. I hope that Mr. Trickle's story will encourage you to try approaching the struggle to break free with new vigor each and every day, as giving up is like serving a life sentence without parole; an endless cycle of meaningless routines with no hope of release.
Celebrate your successes, learn from your failures, and press on!
It's been nearly three years since I've received my diagnosis, and I still don't associate new symptoms I have with my disease. This week the irritating earache/headache I assumed was sinusitis kicked into overdrive. The pain was unrelenting and unresponsive to Tylenol, so I decided to go to the ER, suspecting this will mark the beginning of a new wild goose chase. The prognosis, according to the ER doctor was "right acute serous otitis media, left chronic serous otitis media" and I needed to see an ENT — stat.
Of course, as is typical for those of us with chronic invisible illnesses, when the ENT looks in my ears he finds nothing wrong with them. In fact, to quote him exactly, my ears "could be a picture of what a perfectly healthy ear should look like." His concern is apparent as he can see that I am writhing in pain (and dizzy) so he orders some tests. I had blood drawn and scheduled the MRI when I realized that all of this running around would probably lead me right back to Sjorgren's Syndrome or Fibromyalgia, or even better yet, something else that has yet to materialize. Such is life, when doctors who are aware of your condition are unaware of the many different ways it can effect you.
I consider not getting the MRI, the process is so exhausting. But, what if it is something else? Don't I owe it to myself and my family to check it out? And so, I surrender to the chase, and will let you all know how it turns out.