Chronic Illness & ICI Archives 2008

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Once we become ill, we can resent, deny, or even coddle the experience,
or we can learn from it and use it for the good of ourselves and others.


D
on't let illness become your entire life:  Some people get so involved in being a sick person that the illness becomes their whole life.  You are not your illness. Don't lose yourself.  Don't get so caught up in being sick and seeming sick to others so they'll believe you that you won't let yourself do anything at all.  Keep interests outside of health related stuff.  Try to learn not to focus too much on your symptoms.  If you spend time analyzing and discussing every single symptom every day, you'll have no strength left for anything else.  What's most important here is balance.  You can be an informed, educated, involved person without getting so caught up in the disease and illness behavior that you lose the rest of your life and yourself. --from Sharon, who has CFIDS, selected from internet

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The truly handicapped of the world are those who suffer from emotional limitations that make it impossible to use the capacities and controls they possess. If you have a chronic disease, you need not be emotionally handicapped if you continually strive to be able-hearted. Able-heartedness is within the grasp of all of us. I don't think of able-heartedness as a permanent, static state, however. Developing and maintaining this quality is a process that ebbs and flows, depending on how helpless you feel. Even if you feel in the grip of hopelessness, you are behaving in an able-hearted way by any expression of interest in another. Shared interest and compassion is what establishes meaning and purpose in life.

Dr. JoAnn LeMaistre/lives with MS

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Living with Interstitial Cystitis and Fibromyalgia – one approach

By Joyce Jamerson 

In the world of auto-immune difficulties, if you have one, the possibility of developing another is very common.   My first diagnosis, in 1995, was Interstitial Cystitis.  At that time, IC was barely recognized among physicians.  Most females have struggled with a urinary tract infection from time to time, but urinary pain and cramping without bacteria was unexplainable and therefore, thought to be in your head. 

      Through the research of Dr. Clive Solomons, IC was given a name and the Vulvar Pain Foundation had its birth in 1992.  Because his research came to involve more than just vulvar pain, it eventually became known as the Pain Foundation.  You can learn all the technical data by searching key words:  interstitial cystitis and vulvar pain. 

      Symptoms involve pain anywhere below the waist! The bladder wall becomes inflamed, causing urinary burning, itching, stinging and area tenderness.  Muscular pain, digestive problems, yeast infections and joint pain are also a possibility.  To put it in daily terms, because of the pain during a flare, sitting can be difficult, sleep may be a problem and intimacy at best is painful if not impossible.   

      Pain and fatigue and urgency can encompass your entire body and anyone with this diagnosis surely knows the location of many public restrooms, if indeed, they are able to be out and about.

     My urologist had little to offer that was non-invasive, except anti-depressants and an antihistamine.  He suggested a trial of Elmiron, but it was of little help, so I used a low dose anti-depressant for almost two years and finally tapered off because it seemed of little value.  Because of dietary changes, weight loss is common.  (Some may actually gain weight if they become more sedentary because of the pain.)  It doesn’t take long to realize that acidic foods can trigger pain episodes, so mustards, vinegars, many nuts, citrus, tomatoes, pineapple, etc. need to be avoided.   Low carb meals and a reduction in sugar are especially important if there is yeast involved.  Cranberry juice, in this instance, is not helpful and in fact, may actually complicate the problem.  Pain flares can be soothed by stirring 1/2 teaspoon of baking soda into a large glass of water to alkalize the body.  Studying the acid/alkaline balance in the body may be of benefit.  Because of our American diets, we frequently are too acidic – a good breeding ground for ill health. 

      Later, while visiting a church in another town, I overheard a woman describing her health problems to a friend.  I asked, “Do you have interstitial cystitis?”  She was surprised that I even knew what it was, and we immediately began to compare symptoms and treatments.  This was before the conveniences of computers and internet access were affordable.  Weeks later, she sent me a paper; I believe it was by Dr. Solomons, on how food oxalate can trigger pain.   

      I didn’t know what an oxalate was but soon learned.  Oxalate is a powerful irritant that can cause excruciating burning in tissues.  That article eerily  described my health problems.  Since I was trying to improve my heath through good nutrition, my diet had been heavy with spinach salads, sweet potatoes and wheat bran – all extremely high in oxalate!  You can learn all about this on the Pain Foundation’s web site – www.vulvarpainfoundation.org

I consider the oxalate connection the single-most important thing I’ve learned in dealing with these problems.   

      So I started playing with my food – in a good way.  No sweet potatoes for two weeks, then add them back in quantity.  Pain would increase, most of the time starting in the left calf and radiating throughout my body.  On and on it went, until I had a list of trigger foods and started avoiding things that would bring the onset of pain. 

      Since my food base was shrinking, (my husband says “if it tastes good, I have to spit it out”) I tried new things.  I’ve always liked to cook, so my kitchen became a laboratory.  Over the years, I’ve whittled and improved my diet until I’m fairly comfortable most of the time although I fatigue easily and have to pace myself.  My diet is not only gluten free, but also free of soy (high oxalate), dairy, and most sugars, as well as staying low in oxalate.  Oxalate triggers my pain like nothing else.  You can find a chart of low-medium-high oxalate foods at:

http://www.branwen.com/rowan/oxalate.htm 

Next:  The fibromyalgia complication 

      Because of pain in all four quadrants of the body, the diagnosis of fibromyalgia was added.  Fibromyalgia pain is widespread, with 18 tender points throughout the body.  The diagnosis of fibromyalgia is usually given if at least 11 of these points are tender to the touch upon examination.  It is a misunderstood condition because patients generally look healthy but in reality are living with daily exhaustion, generalized aching and sleep disturbances.  Many have acid reflux and IBS symptoms, as well.   

      Although eliminating some foods did provide some relief of IC; muscle and bone pain, IBS, fatigue and tissue pain were still a valid part of life.  Again, the recommended treatment was anti-depressants and sometimes steroids.  Since my system is so touchy, reactions to medication were common and I couldn’t handle being drugged to the point of life on the couch.  The rheumatologist told me, “If you’re not going to take this medication, then I can’t help you.”  Life was dismal, painful and complicated by the onset of menopause and grief over the death of our 19 year old daughter.  She had died suddenly in 1993 due to a brain hemorrhage.

      For one and a half years, I followed the guaifenisen treatment as outlined by Dr. Paul St. Amand.  There are many dietary intricacies to that approach, and each patient will have to decide if it is valuable for them.  You can learn more at: http:fibromyalgiatreatment.com/board/   

      In 2000, an allergist discovered a slight allergy to wheat and corn, so those things also had to be eliminated.  Since I could no longer eat wheat, I switched to rye crackers.  Those brought on some of the most intense bone pain I’ve ever experienced.  Going from doctor to doctor, I tried everything from conventional medicine to acupuncture and holistic medicine.  Although I learned a little more about my body and its needs, nothing was of lasting help.  In 2004, Celiac disease became my next diagnosis.  (That’s another article!)  With Celiac, you have to avoid the protein that is in certain grains:  rye, barley and wheat.  Oats are acceptable only if they are grown in dedicated fields; most American grain crops are rotated, contaminating our oats with wheat. 

      Since medication is such a problem, dietary control is my choice.  It’s not easy or convenient, but I firmly believe that those with autoimmune difficulties owe it to themselves to go wheat free for at least 6 weeks. What is six weeks in the grand scheme of things if it could mean a reduction in pain and a more comfortable life?  (Slowly removing high oxalate foods may also bring benefits.) Wheat and dairy are notably problematic, as are high glycemic and sugary foods.   Acid/alkaline balance is also important.  For more tips on improving IC with some natural approaches, go to:  www.evenbetternow.com  This site provides some articles on IC & bladder health, as well as acid/alkaline balance and digestive health that might be of interest.  Many natural approaches can be found on the internet; some good and some not so good.  This is not a recommendation of any product.  Each must do his own homework and decide if a natural approach is more/less beneficial than our standard Western medicine. 

      Only small amounts of honey or maple syrup are my sweeteners and the jury is still out on artificial sweeteners so I do not include them.  Frozen veggies are the next best thing to fresh; I try to avoid food in cans or boxes, except for a few canned fruits.  As much as is possible, prepare meals with fresh ingredients.   Don’t forget to exercise.  Gentle walking, yoga and stretching are all helpful.  

      Because I am post-menopausal, hormone replacement has been beneficial.  Each person has to study the pros and cons and make a decision.  My decision was for low dose bio-identical hormones, rather than the pre-fab type.  Estrogen cream also helps soothe dry, burning vaginal tissues.  Valuable items in my medicine cabinet are:  Atarax (antihistamine) as well as a dose of baking soda for IC flares; Azo for soothing a touchy bladder, Darvocet for pain episodes and Flexeril at night for restful sleep.  Epsom salts baths (with baking soda) provides a soothing, relaxing respite for sore, aching muscles.  Vitamin supplements are valuable, but each has to do their own research.  What works for one, may not work for another.  When feeling better, the temptation is to try forbidden foods again.  I’ve done my share of this, but quickly regret it and return to the strict regimen.   

      If you are not a person of will power, this approach will never work for you.  It’s not for the faint hearted or easily discouraged, but you may reap great benefits from your efforts.   

      It’s kind of like the Christian life, isn’t it?  Not for the faint hearted but the rewards can be out of this world!

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Our physical eyes sees the prosperity of the wicked, but spiritual eyes see a far greater treasure. "Do not be envious of the workers of iniquity. For they shall soon be cut down like the grass...delight yourself also in the Lord and He shall give you the desires of your heart." (read all of Psalm 37)

Our physical man can't understand why God would allow pain in a righteous man's life, but a spiritual man understands pain brings out the true character: "Examine me, O Lord, and prove me; try my mind and my heart." (Psalm 26:2)

Our physical man sees only pain in sorrow, but the spiritual sees benefit. "Sorrow is better than laughter for by a sad countenance the heart is made better." (Eccl. 7:3)

Our physical man does not see God during affliction, but spiritual eyes see the goodness of God and His word: "Before I was afflicted I went astray, but now I keep Your word. You are good, and do good; teach me your statutes." (Psalm 119:67-68)

Our physical man sees ongoing affliction and feels despair, but spiritual eyes the eternal and hope replaces despair: "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but a moment, is working for us a far more exceeding and eternal weight of glory,  while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal." (2 Cor. 4:16-18)

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Damaged Goods, Broken Cookies, and Thumbs
Virgil Fry

"Sometimes I feel like damaged goods." The statement came from a nice-looking, highly successful woman. She's witty, energetic, and smart. She's been praised for being a model teacher, church member, mother, and spouse.

And yet, few people ever know of her struggle to fit in. Now middle-aged, she's been diabetic since age 5. Daily injections, blood and urine testing, and monitoring food intake aren't flashy conversation topics for a child or adult, and this disease is not one that shows. When it is known, advice like "is that on your diet?" flows freely.

And that's where the rub comes: at times, to her it seems like the whole world is healthy and happy, and she's taking care of business alone.

Yet, it's that inner battle that sensitizes her to others. She's a master at tuning in to the masked messages of fellow strugglers who also feel like damaged goods.

At Camp Star Trails for children and siblings living with cancer, they sing a wonderful song by Larry Penn:

I'm a Little Cookie yes I am
And I was made in the cookie land
On my way to the cookie stand
A little piece broke off of me.
Well I ain't as round as I might be
But I taste good just you wait and see
I can love back just twice as hard
As a regular cookie can.

A myriad of experiences causes us to perceive ourselves as less-than-perfect. All of us struggle with inner turmoil fostered by unseen elements: depression, hidden temptations, and passions, relational rifts, alienation from God and humanity, evil motives, violated trusts.

Many years ago Dr. Paul Falkner preached a sermon on thumbs I'll never forget. He held up his hand and pointed to four long fingers that look similar, as if they are part of a matched set. In comparison, he held up a thumb. Shorter, off-centered, not quit like the others, the thumb can definitely suffer from an inferiority complex. But it's the thumb that truly gives power and dexterity to the other fingers. Try to tie your shoes without it.

In human terms, we all feel like thumbs in certain areas. As if everyone else in the world is percolating along without a care in the world. As if no one can grasp or is willing to listen to our stories of brokenness and limitations. But in reality we, like the oddball thumb, are a vital part of teams that couldn't function without us.

In those moments when we view ourselves as damaged goods, broken cookies, and thumbs, opportunity is given to hear higher, deeper callings. Voices from the past that break through the centuries and proclaim:

A bruised reed he will not destroy. (Isa.42:3)
Come to me, all you who are weary and burdened, and I will give you rest. (Matthew 11:28)

Lord God, we are mindful of our need for rest, refreshment, and restitution. We are aware of our broken spirits, and we believe in your promise to make us whole. Help us, Lord, to own our brokenness as a bridge to You, and as a bridge to others around us who also feel like damaged goods. Through the One who loves us into wholeness, Amen.

from "Lifeline Newsletter," 8/97
contributed by Joanne Beckley

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How to Handle People
Who Do Not Care to Understand
Pat Gates


FROM THE MAIL: A topic I would like discussed on this page is: How to handle people who do not care to understand your situation and could never begin to understand what your life is truly like.  I usually just do not bother with those kind of people, but treasure the friendships of people who do understand and have compassion in their hearts for me.

______________•______________

Like I've said many times since starting this publication, being misunderstood or un-understood (sometimes I have to make up words), is what I hear most often from those with ICI. Why? Because it hurts. Because it never ends. Some of us live years with chronic illness and we've come to the conclusion we are finally understood and accepted and when we least expect it, there it is, the comment... the comment that reveals the true thoughts about how that individual preceives our lifestyle and our thought-style (another made up word). 95% of the time we are much better off than we realize in the eyes of the Determinator (the one who determines just how sick or well we really are). Rarely are we worse off in their estimation. This is due to the But-You-Look-So-Good syndrome we live with as well as the Sit-Around-Do-Nothing-As-You-Look-So-Good syndrome. No one can look so well and feel so bad--at least that's what the Determinators believe.

Some "normals" are just ignorant and they will learn one day. Others refuse to learn. There are even some ICI'ers themselves who misjudge other ICI'ers and don't seem to learn from their own experience with this. The writer of the note said she doesn't usually bother with those who refuse to understand her and that's probably the best thing if you have that choice. As she said, it's good for us to treasure our friends and family that do trust us and who try to understand and support us.  

However, some ICI'ers have close family members in their physical and spiritual family who they have to encounter, sometimes on a daily basis and may not be able to avoid the comments of distrust. So what do we do with those who REFUSE to try and understand us?

      1. Don't pretend to be well to make them feel better about themselves.
      2. Don't pretend to be sick when you feel better because you are afraid they won't believe you when you feel worse.
      3. Don't be embarrassed around them and begin to make excuses for yourself.
      4. Don't feel like you always need to explain yourself.
      5. Don't allow their disbelief to influence you to doubt yourself.

_:::_

    1. Do be honest with yourselves and with them. That doesn't mean you have to tell them what you think and how you feel, but if you are feeling sick, don't hesitate to say it. If you are feeling better, don't hesitate to say it. In other words, don't allow their disbelief to dictate how you must respond and how you feel about yourselves.
    2. Do make a choice whether or not you want to reveal to them how you are feeling. Most often it's best to keep quiet if they have proven themselves to be a doubter. Your silence may prevent further hurt within you.
    3. Do try and keep your hurt level down by dismissing their doubt from your mind and don't dwell on it. Satan will be there trying to tempt you with anger, discouragement, and self-doubt --- don't allow him to do that.
    4. Do treat the doubter as we are told by God to treat everyone -- to do good, to be kind, and not to take vegeance.
    5. Do remember God knows your heart, your intentions and your body. If everyone in the world doubted you and refused to understand, you always have God to lean on, who knows you and will strenghten you.

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The Doubters

If we don't talk about the illness, everything must be OK.
If we do talk about it, "Complaining," is what they say.

If we endure pain silently, it can't be all that bad,
If we don't, we "Mope, and shouldn't be so sad."

If a better day comes, how good it is to finally get out,
"See, that's all you need to get better," is what the doubters shout. 

So what do we do with their disbelief that often causes fear?
We dismiss their doubt and live without the hurt that lingers near.

                                                                                                                         Pat Gates

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I realized something about myself, recently. I had been pushing myself and ignoring how I really feel in order to try to be the well person others want/expect me to be. Just the other day I encountered a Doubter and a Determinator (see article above) and rather than go along with what they demanded of me, with confidence, I calmly told them I was physically incapable of what they wanted and expected from me. It felt so good to just state the truth without going into a big speech of defending myself as well as not giving in to how they presumed I should be. A good, short, confident response, put nicely, is basically all we need, most of the time. Notice I didn't say it will always be accepted, but rather it is all we need.  -Pat

 

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You can't go home when home's no longer there...
We all go back there, visiting in our minds the life we once had, from time to time, sharing the life we had and the person we used to be with some of the people we now meet. I think sometimes we do it to remind ourselves and try to get others to see that we weren't always the bumbling idiots we now sometimes feel ourselves to be, whether or not that's how we appear to others.

It's like our past life is a building condemned after a disaster - an earthquake, hurricane, tornado, fire, or flood. Instead of tearing the old house down and rebuilding, or taking what can be salvaged and picking up the FEMA check before moving on and starting over again. Instead of making a constructing a new life, we pitch a little tent and camp out in the yard, dreaming about how nice the place used to look, all the great times we had in there. We even drag passersby in to see the shambles and try to describe to them what it used to look like and how happy we were in there in the days before the disaster.

If you are still camped out in your old yard, it's time to move on. By all means, take what mementos you can find, but it is time to start building new dreams, new memories, new life.

Research has shown that seniors do better when they extend themselves to care about others, doing volunteer work to help people who are in similar or worse straits than they are. So do those who are living with chronic illness.

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What's your fatigue level?


"In 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered that the attack rate of M.E. [Chronic fatigue syndrome pg] was about fifteen times higher in the late 1980s-early than the attack rate of polio in the early 1950s. We don't get paralyzed in the formal sense; we just drop out and disappear."  -Hilary Johnson

"The fatigue is not everyday tiredness, experienced after an energetic day’s gardening. It is an exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe.’’ M.E. sufferer

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“A friend is someone who knows the song in your heart and can sing it
back to you when you have forgotten the words.”

Touched by Kindness
(in praise of friendship) 

For Linda, from Ruth

My special Hawaiian friend, Linda Seltenright, has been a bight light in my life since I first met her and her husband, John, in 2003 on a trip to the islands.  We worshipped together in her husband's office building with a very small group of other Christians.  In the short time we were there with them, we developed a very strong friendship. She seems to know when I could use a joke, a silly email, or a beautiful picture of God's artistry of the sunrise over Kaneohe Bay on which she lives.  We have kept up with each other, our families, our children and grandchildren, our joys and sorrows, our accomplishments and failures, and best of all, our Christian friendship. The emails stream back and forth on a regular basis.  Yes, I am so blessed to have met this fine lady and especially to have her for the great person she is.
Ruth H. Miller

For Marsha, from Sharon

Thank you for everything you have done for our family, from taking my child into your home for nine months and treating him as your own to sending tapes of gospel meetings and the latest... the  potholder that takes over three hours to make!

You are a dear friend and sister in Christ.

I treasure my friend because she took the time to speak to me today. She often says words that tells me she doesn't understand why today I feel good but yesterday I didn't and tomorrow, who knows. She may never understand. But I love her because she cares enough to talk to me. -anonymous

For Cindy Granke, from Pat

Thank you for being my friend. You respect my need for confidentiality so I can tell you anything. You allow me to complain when I've had a bad day -- you forgive me when I go overboard with complaining. Even when you have so many physical problems, yourself, you listen and put me first, as well as remember me in your prayers. You recognize my weaknesses as well as my strengths and because you are so very understanding, I know you continue to love me when I'm down in the valley or on top of the mountain. With you, I can feel completely free to be me. You have been a good friend and I thank God for you. 
Your friend and sister, Pat

 
A friend loves at all times. Proverbs 17:17

There is a friend who sticks closer than a brother. Proverbs 18:24

Faithful are the wounds of a friend. Proverbs 27:6

Ointment and perfume delight the heart, 
      And the sweetness of a man’s friend gives delight by hearty counsel. 
       Do not forsake your own friend or your father’s friend, 
     Nor go to your brother’s house in the day of your calamity; 
      Better is a neighbor nearby than a brother far away. Proverbs 27:9-10

As
iron sharpens iron, 
      So a man sharpens the countenance of his friend.  Proverbs 27:17

 


True friendship isn't about being there when it's convenient;
it's about being there when it's not.

A friend understands our silence.

Friendship is born at that moment when one person says to another,
“What! You, too? I thought I was the only one.” - C. S. Lewis
 
Prosperity begets friends, adversity proves them.
 
Friendship is a single soul dwelling in two bodies.

 

"By friendship you mean the greatest love, the greatest usefulness,
the most open communication, the noblest sufferings,
the severest truth, the heartiest counsel, and the greatest
union of minds of which brave men and women are capable."

 

If you were another person would you like to be a friend of yours?


Around the corner I have a friend,
In this great city that has no end.
Yet days go by and weeks rush on,
And before I know it a year is gone,

And I never see my old friend’s face;
For life is a swift and terrible race.
He knows I like him just as well
As in the days when I rang his bell

And he rang mine. We were younger then—
And now we are busy, tired men—
Tired with playing a foolish game;
Tired with trying to make a name.

“Tomorrow,” I say, “I will call on Jim,
Just to show that I’m thinking of him.”
But tomorrow comes—and tomorrow goes;
And the distance between us grows and grows.

Around the corner!—
yet miles away...
“Here’s a telegram, sir.”
“Jim died today.”

And that’s what we get—
and deserve in the end—
Around the corner,
a vanished friend.

- Henson Towne







A Friend
Also Loves
Mr. Hyde

What a lot of people don't know is that a chronic illness can change your personality. Sometimes I feel like Dr. Jekyll and Mr. Hyde. When I am well I can be a very friendly and nice person...then the illness kicks in and I turn into a whole other person. I used to be the most patient person in the world now I seem to be the most impatient person in the world. I used to be an extrovert outgoing, and love being around people. Now people just exhaust me and though I like being around people it can be too much for me. -selected off internet

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Life with Celiac Disease

By Joyce Jamerson 

     This weekend we’ll be having some company, so today was a prep day.  I like to do things ahead of time, if possible.  After some cooking and baking, the counters will be wiped down with kitchen cleaner or anti-bacterial spray, taking care to put the pans I used in a special place.  Later, I’ll do some cooking and baking separately for me, and the same utensils cannot be used unless they are stainless steel and well scrubbed.  If the same tray or pan is used for my baking, it will be lined with parchment paper. Frank came in for lunch, so I make his sandwich on one counter, and prepare my chicken salad and rice crackers on another so there will be no cross contamination.  Does that sound like someone who has (OCD) Obsessive Compulsive Disorder?   It might seem that way, but it’s really daily life with Celiac disease.  When fixing food that contains gluten for my husband, I either do it on waxed paper or wipe the counters thoroughly and then wash my hands.  If my food were prepared on the same surface, it could make me sick.  He even has to be careful about kissing me if he has just been eating cookies or some other gluten snack. 

      In the world of auto-immune disorders, Celiac disease has been a little known problem in our United States up until just a few years ago.  It is a disease of the small bowel; the inability to digest the protein from four major grains - Wheat, Barley, Rye and Oats.  Oats do not have the same protein and can be tolerated by some if they are grown in dedicated fields, where they cannot become contaminated with other crops.  Gluten is the common name for the offending protein.  These proteins are found in all forms of wheat (including durum, semolina, spelt and kamut), and must be eliminated. 

      Gluten will damage the mucosal surface of the small intestine causing all sorts of havoc with digestion and absorption.  The variety of symptoms include diarrhea and/or constipation, IBS, weakness, anemia, fatigue, early onset osteoporosis, bloating, gas, abdominal pain, weight loss and bone pain.  Vitamin and mineral deficiencies are not uncommon.  There are varying levels of sensitivity; some become ill immediately or the reaction could be delayed for a day or even longer.  The disease can be in silent form, having absolutely no symptoms until a fracture or broken bone becomes a clue.  Because it is inherited, it is very important to have regular bone scans and check vitamin D levels if Celiac has been discovered in other family members.  There is also a skin manifestation of the disease (Dermatitis Herpetiformis) that causes an itchy rash.  For some, DH is the only symptom with no intestinal involvement.  Treatment is the same; total avoidance of gluten. 

      Thanks to the efforts of Dr. Alessio Fasano, we now know that one in   every 133 persons has CD instead of one in every 10,000 as once thought.  He came to Baltimore after practicing in Italy (where CD is more commonly diagnosed), and was instrumental in developing the proper diagnostic tools. The gold standard of diagnosis has been biopsy (and still is according to some doctors), but blood testing is reliable and more easily available.  The tTG test became available and screening for the disease began.  It is no longer considered a rare disorder, so try googling Celiac Disease, and you will find tons of useful information.  www.celiac.org is the very informative site of the Celiac Disease Foundation. 

      Complicated by interstitial cystitis and fibromyalgia (see last month’s article), my own journey took 8 years and 10 different doctors.  We learned that Celiac is inherited and can lay dormant in the genes. Although he was never diagnosed, my tall, thin paternal grandfather with intestinal difficulties probably had Celiac. (Grandma said he was a pain to cook for!) We also learned it can be triggered by trauma.  My own symptoms began one and a half years after the death of our 19 year old daughter.  Finally, a diagnosis. 

      Staying on a GF diet is easier now, since the labeling laws have improved, although it is best to verify gluten free status with each company.  Various lists and message boards help with this information and one soon learns which companies are reliable.  Many restaurants now have gluten free menus, which is quite a commitment for the staff.  Prep areas must undergo stringent standards to maintain their GF status. 

      Digestion becomes compromised; so many celiacs are also sensitive to dairy and soy.  The diet becomes even more limited but the benefits of gluten free living can be widespread.  A few months of being gluten free may mean a great deal of difference in the health status of many with auto-immune difficulties.  What are a few months in the grand scheme of things if it brings about a better quality of life?   

      There are many gluten free products available now that make life easier.  The pressure is on to improve and alternative flours have been blended to produce a product that is just as good, if not better than those with wheat.  General Mills is the latest mainstream company to recognize the growing market for gluten free cereal that doesn’t have to come from a health food store. Now and then, I can now enjoy a bowl of Rice Chex! 

      Living with CD takes a lot of planning and preparation but is certainly doable.  Waiting until we are hungry before thinking about the next meal is not a wise thing.  We can’t control our genes or how our bodies react to stressors and environment but we can control what goes into our mouth.  If our bodies are to be a temple, doesn’t it make sense to plan ahead and keep that temple in good working order if it is within our realm of possibility? 

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Blending Illness and Life
by Joyce Jamerson


    Most of us have our daily struggles; struggles that require patience and planning.  These may include child rearing, money, illness or the rigors of a job outside the home, as well as many other things. We won’t list all the possibilities; it could be depressing! 

    Illness can be varied, from a temporary cold or flu to long term life altering diseases that require stringent treatment and many points in between.  The purpose of this article is to give some insight into living with an invisible chronic condition; one that may not require confinement.  As a reminder for those who may not have seen previous articles, my health problems include IC (interstitial cystitis), Fibromyalgia and Celiac disease.  My husband is a preacher, so balancing illness and schedules is sometimes a challenge.  There are times when I simply have to stay home and rest my cranky body; in spite of my brain telling me there is much to do.  For instance, recently there was a lectureship at a neighboring congregation with speakers both morning and evening. Prolonged sitting is not one of the things I do best, but we took in as many as possible.  In order to do so, resting a little in the afternoon was essential and other choices had to be made to have the week go smoothly.  Because of diet restrictions, meals must be planned ahead so shopping, cooking and storing some things in the freezer becomes necessary. Failing to plan ahead can sabotage the best of intentions.  When we’re hungry, we’re hungry!  Snacking on forbidden foods can bring on pain episodes that can last for days.   

    Planning for our own gospel meeting in a few short weeks is already in the works, too.  We like to be in one another’s homes as much as possible and enjoy being with the visiting preacher.  Dietary restrictions require an advance phone call or two; to make things easier.  Those in our local congregation know of my health challenges, so I’ll ask about the menu and ask if I may bring something for everyone to enjoy and if I need to bring anything for myself.  Sometimes the menu is accommodating and sometimes not, but I do not expect the hostess to prepare according to my needs.  I can easily take a plate for myself and still enjoy the company.   

    Although there have been times when I really wished I could sample what was being served, the principles of self control and putting others first help to dim the poor little me, I can’t have what every one else is having syndrome.  Life is what it is and making everyone else uncomfortable is not the goal.  Besides, if a certain food brings on illness, it’s not so tempting anyway!   

    Obviously, my being able to travel with Frank is somewhat hindered.  Since it is tradition to eat in one another’s homes during special studies and gospel meetings, it’s asking a lot to expect the cook to prepare according to my needs.  If I do go with him, a list can be sent ahead of foods I can safely eat.  It’s easier for the cook to see what is safe, instead of sending a list of negatives; no gluten (wheat, rye, and barley), no soy, no dairy and on and on.  (Actually, it’s rather simple cooking and since many households are more health conscious these days, it may not too difficult for some.  If casseroles are heavily used, it would be more difficult.)  Eating out is a possible solution, especially for those who are unnerved by my restrictions or by those who work outside the home but still want to enjoy the fellowship.  When we’re entertaining at home, many times my meal will be safe for me; sometimes it is not.  I cook both ways, using my husband as the official taster for gluten containing items.  Pot luck dinners require a bit of planning.  Because of cross contamination, a buffet is very risky, so it’s better if a plate can be prepared ahead of time. 

    Some have asked how I handle taking communion.  We commune every Lord’s day, so I keep an unleavened rice cracker in my purse.  At the proper time, I’ll partake of that, while others are partaking the regular kind.  It was my last gluten item to be given up but upon learning that one small diet infraction every two weeks could keep the immune system stirred, the change had to be made.   I was very self conscious about it at first, but it’s a necessary step in my health journey.   

    Fortunately, I have a husband who helps me out a great deal.  He can’t cook, but is superb with the vacuum and pretty handy with kitchen clean up as well.  After having a group over, I will put food away, but then he shoos me out of the kitchen, loads the dishwasher and tidies up.  That one thing allows me to face entertaining with a better attitude.   

    Whatever your situation, proper rest and planning ahead can make difficult days easier.  Work within your limits and try not to sabotage your own schedule.  

    Paul said he learned to be content in his circumstances, Philippians 4:11.  That was spoken with the voice of experience; it didn’t come easy for him.  With diligence, it was a trait that he developed.  At times, I have felt guilty for not being able to do everything that I felt others expected of me.  Actually, I was my own tormenter.  I set more stringent goals for myself than anyone else could impose on me and felt badly when my list of things couldn’t be accomplished.  A long time ago, I purchased a book entitled, “When I Relax I Feel Guilty” by Tim Hansel.  I’ve referred to it often and particularly remember one statement ~ God called us to be faithful; not frantic.  Many times we tie ourselves in knots before we even start because of unrealistic expectations. 

    Some aspects of illness have actually been a blessing ~ giving me permission to slow down; to be more realistic and to enjoy some simple things in life.  Many things can be accomplished while relatively sedentary; note writing, phone calls, grocery lists, menu planning, and especially prayer and Bible study. Then too, there are days when fatigue hardly lets you do any of these things.

    Why don’t you write in and tell us your favorite way to rest and regroup?  What are your tricks for coping with fatigue and illness?  Others could surely gain from new insight and wisdom.  If we have to live with invisible chronic illness, may we do it well!

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Let nothing be done through selfish ambition or conceit, but in lowliness of mind let each esteem others better than himself. Let each of you look out not only for his own interests, but also for the interests of others. Philippians 2:3-4

F Illness is demanding. It requires mind and body control just to get through our daily routines. We need to try our best, within our ability, to try and put our mind on others and not be consumed with our own needs and desires.

Do all things without complaining and disputing, that you may become blameless and harmless, children of God without fault in the midst of a crooked and perverse generation, among whom you shine as lights in the world, holding fast the word of life... Philippians 2:14-16

FThere is a difference between honestly answering, "How are you?," and complaining; one is stating a fact, the other is an attitude of the heart. Complaining is a rebellion against our situation and a refusal to accept it; it is a conscious decision that we will not be happy as long as we live with illness. On the other hand, acceptance and living in the spirit will bring the peace and contentment we need to allow our lights to shine as children of God.

But what things were gain to me, these I have counted loss for Christ. Yet indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ. Philippians 3:7-8

FThere is something more important than loss of health. Those who live in the world of good health like to say, "As long as we have our health, that's all we need." And what happens when they lose their health? Hopefully, they find out they were wrong - good health is a blessing not to take for granted, but it is not something we, as children of God, need. Our need is gaining Christ and the excellence of His knowledge.

                                                                    -Pat

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Spiritual Guard Duty

 By Warren E. Berkley

While in the Army I was assigned to guard duty a few times and found it to be more than I had imagined. My pre-military perspective was, you get to carry a gun and walk back and forth with authority. I couldn't wait.

Not long after beginning basic training, I learned the truth about guard duty. It involved much more than just walking back and forth with a gun. First, you had to study Field Manual 22-6. You had to know the difference between general orders and special orders; interior and exterior posts. It is necessary to know the Challenge, the Password, the Chain of Command and relief procedure. All this instruction was vital to the discipline of the task, and was far more complex and serious than I realized.

But one lieutenant explained the essence of the work: "The main thing about guard duty is using all your senses to know what is happening at your post." I was assigned guard duty at the motor pool one time and I remember the intensity of trying to watch and listen and be aware of everything in the area. There was a heightened state of alertness required by the task.

Every Christian is on spiritual guard duty. We are charged to be aware of what's happening around us, be alert to danger and prepared to respond. "Watch, stand fast in the faith, be brave, be strong. Let all that you do be done with love," (1 Cor. 16:13,14).

I must guard my mind against error, selfishness, indifference and every beginning of sin. I must guard my association with people, alert to any pressure to engage in any evil. I must watch my relationships for any opportunity to help people, to teach people and influence people in good things. I have the individual duty to guard against any approach of the enemy, any spiritual danger, any moral corruption or compromise.

We do not carry a rifle, but we are armed with "the sword of the Spirit, which is the word of God," (Eph. 6:17). We have no earthly lieutenant we are answerable to, but we are accountable to the "Captain of our salvation," (Heb. 2:10).

"Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world," (1 Pet. 5:8,9).

"Therefore let us not sleep, as others do, but let us watch and be sober. For those who sleep, sleep at night, and those who get drunk are drunk at night. But let us who are of the day be sober, putting on the breastplate of faith and love, and as a helmet the hope of salvation. For God did not appoint us to wrath, but to obtain salvation through our Lord Jesus Christ, who died for us, that whether we wake or sleep, we should live together with Him." (1 Thess. 5:6-10). {Read also, Rev. 3:3; Mark 14:38; Hab. 2:1; Nahum 2:1}

Are you on duty?

Expository Files/http://www.bible.ca

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FROM THE MAIL: In response to Joyce Jamerson's article last month on "Blending Illness and Life" I received the following email:

"I've learned that I MUST pay attention to my own body and not push past my limitations, however tempting that may be.  When I heed my body's warnings, I am able to reduce the total amount of lost time and be more effective in those things I CAN do.
    I go to bed earlier than most people.
    I'm careful about overbooking the schedule.
    Just changed to an easier job, even though it pays less money.  Better to be able to work at something than at nothing at all.
    I've learned I have to pray for strength, because it is NOT my own.
    Simplification of one's life increases freedom to pursue the things that matter most."

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"We would like to come over and pray with you."

The past few weeks I've been in Atlanta helping my son who has pneumonia. One Sunday night about 9 Christians, mostly younger people, came over after services to pray for my son. In 53 years I can't remember one time a Christian said they were coming over "to pray." I've been part of prayer services for my son at the church building and at a sing/prayer meeting at someone's home. I've also had Christians come to visit and end up praying, but I have never heard, that I can remember, a Christian say they are coming over "To pray." There is a great group of young people (20's, early 30's) at the Emory Hills congregation and they prayed some of the most mature, heart-felt prayers I have ever heard. I caught myself smiling and crying as I heard such humble, sincere prayers. Beautiful!

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 .

Are you, like me, finding it more difficult to concentrate when reading the Bible, as well as forgetting what you read? Growing older contributes to this, but so does many chronic illnesses, especially when exacerbations come and the ensuing fog. The following short story will encourage us that our Bible study is not in vain. pg

.

     The story is told of an old man who lived on a farm in the mountains of eastern Kentucky with his young grandson. Each morning, Grandpa was up early sitting at the kitchen table reading from his old worn-out Bible. His grandson who wanted to be just like him tried to imitate him in any way he could.

One day the grandson asked, “Papa, I try to read the Bible just like you but I don’t understand it, and what I do understand I forget as soon as I close the book. What good does reading the Bible do?”

The Grandfather quietly turned from putting coal in the stove and said, “Take this coal basket down to the river and bring back a basket of water.”

The boy did as he was told, even though all the water leaked out before he could get back to the house. The grandfather laughed and said, “You will have to move a little faster next time,” and sent him back to the river with the basket to try again.

This time the boy ran faster, but again the basket was empty before he returned home. Out of breath, he told his grandfather that it was “impossible to carry water in a basket,” and he went to get a bucket instead. The old man said, “I don’t want a bucket of water; I want a basket of water. You can do this. You’re just not trying hard enough,” and he went out the door to watch the boy try again.

At this point, the boy knew it was impossible, but he wanted to show his grandfather that even if he ran as fast as he could, the water would leak out before he got far at all. The boy scooped the water and ran hard, but when he reached his grandfather the basket was again empty. Out of breath, he said, “See Papa, it’s useless!”

“So you think it is useless?” The old man said, “Look at the basket.” The boy looked at the basket and for the first time he realized that the basket looked different. Instead of a dirty old coal basket, it was clean. “Son, that’s what happens when you read the Bible. You might not understand or remember everything, but when you read it, it will change you from the inside out.

That is the work of God in our lives. To change us from the inside out and to slowly transform us into the image of His son. Take time to read a portion of God’s word each day.

Years ago, a farmer owned land along the Atlantic seacoast. He constantly advertised for hired hands. Most people were reluctant to work on farms along the Atlantic. They dreaded the awful storms that raged across the Atlantic, wreaking havoc on the buildings and crops. As the farmer interviewed applicants for the job, he received a steady stream of refusals. Finally, a short, thin man, well past middle age, approached the farmer. "Are you a good farm hand?" the farmer asked him.

"Well, I can sleep when the wind blows," answered the little man.

Although puzzled by this answer, the farmer, desperate for help, hired him. The little man worked well around the farm, busy from dawn to dusk, and the farmer felt satisfied with the man's work. Then one night the wind howled loudly in from offshore. Jumping out of bed, the farmer grabbed a lantern and rushed next door to the hired hand's sleeping quarters. He shook the little man and yelled, "Get up!  A storm is coming!
Tie things down before they blow away!"

The little man rolled over in bed and said firmly, "No sir. I told you, I could sleep when the wind blows."

Enraged by the response, the farmer was tempted to fire him on
the spot. Instead, he hurried outside to prepare for the storm. To his amazement, he discovered that all of the haystacks had been covered with tarpaulins. The cows were in the barn, the chickens were in the coops, and the doors were barred. The shutters were tightly secured.  Everything was tied down.


Nothing could blow away. The farmer then understood what his hired hand meant, so he returned to his bed to also sleep while the wind blew.

Nothing could blow away. The farmer then understood what his hired hand meant, so he returned to his bed to also sleep while the wind blew.

contributed by Susan Grant

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Where There's a Will There's a Way

WE have faith in old proverbs full surely,
For Wisdom has traced what they tell,
And Truth may be drawn up as purely
From them, as it may from "a well."
Let us question the thinkers and doers,
And hear what they honestly say;
And you'll find they believe, like bold wooers,
In "Where there's a will there's a way."
The hills have been high for man's mounting,
The woods have been dense for his axe,
The stars have been thick for his counting,
The sands have been wide for his tracks,
The sea has been deep for his diving,
The poles have been broad for his sway,
But bravely he's proved in his sriving,
That "Where there's a will there's a way."
Have ye vices that ask a destroyer?
Or passions that need your control?
Let Reason become your employer,
And your body be ruled by your soul.
Fight on, though ye bleed in the trial,
Resist with all strength that ye may;
Ye may conquer Sin's host by denial;
For "Where there's a will there's a way."
Have ye Poverty's pinching to cope with?
Does Suffering weigh down your might?
Only call up a spirit to hope with,
And dawn may come out of the night.
Oh! much may be done by defying
The ghosts of Despair and Dismay;
And much may be gained by relying
On "Where there's a will there's a way."
Should ye see, afar off, that worth winning,
Set out on the journey with trust;
And ne'er heed if your path at beginning
Should be among brambles and dust.
Though it is but by footsteps ye do it,
And hardships may hinder and stay;
Walk with faith, and be sure you'll get through it;
For "Where there's a will there's a way."

Eliza Cook




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