This letter has been on my mind and my heart for over ten years now. It is not an easy letter to write, and it may not be an easy letter for doctors to read, but I hope it’s an encouragement for all who do read it. I’m grateful for the men and women who have chosen the grueling and difficult path of medical school, followed by several years of residency and internship to become physicians. The many doctors who have spent years researching diseases and chronic illnesses, and who have developed successful treatments have my admiration and thanks for their passion and their determination. I’m certainly indebted to the many doctors who rise early to do hospital rounds, who see patients and/or perform surgery during the day, who return phone calls or review patient records at night, and who often sacrifice time with their families to bring health to our lives. Our family has four people who have been diagnosed with chronic illnesses and over a 25-year period, we have seen hundreds of doctors in several states for diagnoses, second opinions, treatments, procedures and tests. We have seen the “good, the bad, and the ugly.”

This article contains no statistics, no results from double-blind studies, no comparison of the effectiveness of medical treatments, and no information from clinical trials. It does contain the observations of a patient, wife, and mother and her experiences with and perspective on our family’s encounters with the medical community. If you looked at our calendar the last few years, you’d see our family has had an average of 60 visits to doctors each year, not including visits for laboratory tests or procedures.

When our children lived under our roof full-time, I was the family manager of four people’s doctor’s appointments, medications, and treatment regimens. In 1982, I was diagnosed with Ulcerative Colitis; I also was diagnosed with endometriosis several years later, which required several laparoscopies and medication for treatment, and most recently, another laparoscopy. Approximately four years ago, I was diagnosed with Late Stage Lyme Disease, which is very controversial. I have had several procedures to remove kidney stones and to open more fully my urinary tract. My husband of 30 years was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), officially in 1990, and we had to travel to the Cleveland Clinic to get that diagnosis and a treatment plan. Our 22-year old son was diagnosed with Crohn’s Disease in 1996 at the young age of seven at Penn State Hershey Medical Center. Our 25-year old daughter was diagnosed with Crohn’s Disease in 2006 in her sophomore year of college. There are very few lab tests, ultrasounds, MRIs, bone scans, colonoscopies, outpatient procedures, CT scans, stress tests, diets, food regimens, and alternative therapies that our family has not tried.

We are a family who have always been active physically and have maintained relatively healthy diets and lifestyles. When I met my husband, he was an avid racquetball player; he then became an avid runner and now does cardio workouts and strength training at a local fitness center at least five times per week. I have been a group fitness instructor for over 25 years and am certified as a personal trainer. Our daughter was active in softball and dance from childhood through high school. Our son played baseball and soccer in his elementary years and became the starting goalie for several high school age teams and danced through high school. In his free time, you could often find him playing basketball, paintball, touch football, riding bikes, or running. Because of our son’s Crohn’s Disease and subsequent flareups, we made a conscious effort to avoid too much processed and junk foods. So we are not a family that has been inactive physically or careless about our eating habits, and many of our doctors have attributed our ability to stay active in our work and other activities to our healthy lifestyle.

I know from talking with several of the doctors we have come to know intimately that treating a patient with a chronic illness that has no cause or cure can be a frustrating experience, and is often the most difficult patient to care for. Most doctors only see the patient 10-15 minutes every four to six months and unless there’s a new medication or treatment that has been developed and approved or unless the patient has had some improvement in symptoms, these doctors often feel they have little to offer, and the patient lives in the status quo. There can be a feeling of frustration, defeat, and helplessness on both sides.

There are several who have treated us who have been able to compassionately overcome this dilemma, providing encouragement and understanding in the midst of chaos. There’s the obstetrician/gynecologist who delivered both of our children (and continues to treat me today) who always considers not just my health status, but the health status of our whole family before prescribing any treatments or going forward with any procedures. He treats the whole person, physically, mentally, and emotionally. There’s the infectious disease doctor we found after we returned from the Cleveland Clinic who willingly and passionately treated patients with HIV, CFIDS, SAD (Seasonal Affect Disorder) and other chronic and sometimes fatal diseases, who was ALWAYS on time with his appointments, and who did not “write off” new symptoms of the disease he was currently treating. He was willing to turn over every stone to find a way to bring more health and wholeness to his patients. When this doctor retired from his practice, he referred my husband to a young doctor, who, although he didn’t know as much about CFIDS or infectious disease, was teachable, humble, and willing to learn through resources my husband offered him. He also cared as much about being a good husband, father, and man of character as he did about being a good doctor. There’s the very knowledgeable, kind, and caring pediatric gastroenterologist who diagnosed our son’s Crohn’s Disease (at age 7) with much anguish, and explained his treatment thoughts and plans in detail, not only to us as the parents, but also to our son. As our son moved into adolescence, this doctor was also able to provide a safe and comfortable environment for a teenage boy to talk about his symptoms, for a disease that is often very embarrassing to talk about. There’s the very impassioned family doctor who we found about seven years ago who treated and walked alongside me five years ago, when I was diagnosed with clinical depression, and whose knowledge, treatment, and compassion proved to be a much greater blessing than more specialized approaches. She listens to her patients and trusts that they know their bodies better than she does, and then she responds with appropriate action and concern. She’s not afraid to try other approaches when recommended treatments are not effective. For example, she has been very supportive of the controversial treatment I have received for my Late Stage Lyme Disease (from an infectious disease specialist who is about an hour drive from our home), primarily because my health has improved as a result of the treatments.

These are a few of the “gems” we have uncovered in our medical journey and our lives are better in many ways, even if not physically, for our interaction with them. I’ve been giving a lot of thought to what makes these “gems” shine.

First, all of them not only have a passion for medicine and their specific discipline, but they also have a passion for learning about and knowing their patients. They listen, I mean they really listen, when a patient describes symptoms, reactions to medications, or how they are feeling overall. And when they listen, they also discern or search out the fears, concerns, anxieties, and worries that lie behind what their patients have verbally and visually conveyed. And then they go one step further and take this information into consideration before considering or discussing any treatment regimens.

Second, these “gems” talk to patients at the patients’ intellectual level. They don’t talk in medical language that is too difficult to understand, or in a tone that is condescending. Nor do they make their explanations too simple or condensed that they gloss over important information that patients need to know. If they have to explain a complicated medical situation or procedure, they do so with aids that help visualize what is happening/will happen and with words that explain how the procedure will be beneficial or how the situation is affecting the body. These doctors allow time for questions and concerns.

Third, all of these doctors had or wanted strong family relationships, and talked about their families or asked about my family at most visits. Because the treatment of a medical condition can change the dynamics in a family, these physicians take into consideration how a medical diagnosis and its short and long-term treatment may affect each family member. Before prescribing treatment, my gynecologist will always check to see how our other family members are doing, what other medical issues I may be dealing with, and how much time I will have to be absent from work and other activities. By inquiring of these other aspects of a patient’s life, a physician can gain insight into the level of treatment a patient can tolerate, and can allow the patient to actively participate in that treatment plan.

Fourth, when a patient calls into these physicians’ offices with a question or a concern, someone in the physician’s office returns the call within a reasonable amount of time, usually the same day. When necessary, the physician will speak to the patient personally to explain in greater detail, allay any concerns or fears, or encourage the patient. In addition to the initial response, these physicians also have consistent follow up, either personally or through their staff, when necessary.

Finally, my husband’s and my faith in God is of primary importance in our lives, and we believe that faith has given us the strength, courage, patience, and endurance needed to survive and even to be strengthened during the last 25+ years with our chronic health issues. These “gems” have either shared and expressed that faith or acknowledged and admired its significance in our lives. To one of these doctors who walked alongside us through a difficult and uncertain time, I gave a framed certificate that said, “Find a doctor who believes that God is greater than the medical profession and you have found a rare gem.”

In addition to these characteristics and actions that make these doctors shine as “gems,” I asked each of these doctors the following questions:

• How long have you been practicing medicine?
• What is your philosophy in treating patients?
• How have you changed as a doctor/as a person while practicing medicine?
• How important is building relationships with your patients and how do you do that with limited time?
• What is your primary goal when you meet with a patient?
• What has been your greatest achievement/success and what has been your greatest failure OR what do you regret most in your medical career?

I have not received any written responses from any of the “gems” who received the above questions, but I have talked verbally to several of them. All of them indicated that they learn much more about life, what’s important in life, and how to handle adversity and chronic pain and illness from their patients who have endured…who have “fought the good fight”……who have “kept their eyes on the prize”…..and their lives are richer for the lessons they have learned.

 So the next time you have an appointment with a “gem” of a doctor, don’t forget to tell him or her how special they are to you, not just for their medical treatment, but for looking at you as a “whole person,” not just as a disease or illness. And that “gem” of a doctor might just “shine” for other patients, too!

Hi everyone,

It’s been a few weeks since I posted here and apologize for my absence. I started a new position on the college campus I work at, and it’s kept me very busy with limited time for my writing. However, I am blessed that God would allow me to learn so many new things at my age and, through His grace, would support me in the many challenges I’ve encountered there. Below is a short devotional I wrote as I thought about how God comforts us in so many ways so that we can comfort others. I hope it’s an encouragement, challenge, and joy for you.

The God of All Comfort 

“the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God” 2 Corinthians 1:3b-4

They are all around us, yet they’re invisible. They can have minimal effects or they can be life-altering. Your neighbor, co-worker, or friend may have one or more, and you may not know it.

I am referring to chronic or “invisible” illness. In 2005, 133 million Americans had at least one chronic illness. All four members of our family live with chronic, sometimes debilitating, disease. We can look healthy on the outside, but be struggling on the inside. The chronic nature of a disease can also be “wearing” over time and can cause people suffering with the diseases to become self-centered, as they must put their energy into maintaining their physical stamina.

 Our family found that the best way to avoid wallowing in our chronic illness was to reach out to someone who needs encouragement, practical medical advice, or prayer. This occurred within our immediate family, as I was diagnosed with Ulcerative Colitis at age 27, and subsequently, our son was diagnosed with Crohn’s Disease at age seven, and our daughter at age 20. Although devastated that our children had this disease, I was grateful to God that I was able to comfort and educate my children. God does not waste anything.

 In the passage above, the apostle Paul gives thanks to God who had comforted the apostles in all their tribulations. They met with many trials, but they found consolation in Christ and gave him the glory for that solace. Paul added that the apostles should comfort others in their suffering by sharing their experiences of God’s compassion in the face of these trials, including how God taught them to endure with faith and patience.

 It’s tempting to dwell on what has been lost as a result of having a chronic illness, but Christ calls us to first receive His comfort, and then to extend that comfort to others who are struggling, using the gifts He has given us. Whether you have a chronic illness or not, when you encounter someone who does, surprise them by being God’s hand of comfort. It just might be what they need to get through another day.

“Plans fail for lack of counsel, but with many advisers they succeed” (Proverbs 15:22)

I love to go on vacation, but I hate the packing that precedes it. It was the Thursday prior to our annual beach vacation. Scurrying from room to room, I realized so many items were only partially packed and there were so many items not packed at all! My son was arriving that night from graduate school in Tennessee (we live in Pennsylvania), my daughter and son-in-love were coming the next night from Virginia, and we were all attending our neighbor’s son’s wedding on Saturday, with plans to leave for the beach on Sunday morning.

I had also shopped to have food and snacks in our house, got clean towels out for everyone, made sure bedrooms were ready, and shopped for and wrapped two wedding gifts! Phew! I felt like I was running a bed and breakfast as well as preparing to go away to one! I began to lose track of what was packed and what was not and began to feel a little out of control.

My knight in shining armor (MKISA), my husband, came to the rescue with the official Vacation Packing List (VPL), a Word document with all the essentials we need to think about when we’re packing, divided into three categories: Home (turn back A/C, turn off dehumidifier, put out garbage, etc.), Car (check oil/tires/gas, get spare keys), General (cash/credit cards, cell phones/chargers, medications, reading materials, pillows). We just check them off as we have them packed.

MKISA also asked me what I needed to pack that could not be purchased or rented while on vacation. If we had those, we’d be golden! I told him that was my glasses, my contact lenses, and my medications. I felt so much better after packing these items and going down the VPL.

My husband tends to be very focused and he has a list for almost everything. Sometimes it drives me crazy! God has shown my husband, through 25 years of chronic illness, that being disciplined and writing things down was a key to the “abundant life” God has promised. God provided the wisdom of my husband to bring order and peace to our packing process. Without his counsel, I would not have succeeded.

So take a few minutes and type up a general packing list that can be used for almost anytime you have an opportunity to travel-your VPL. Then the next time you want to take your SWEET<3 (sweetheart) or BFF (best friend forever) away with you, think about my MKISA who supplied our VPL, MIH (make it happen), and HAGT (have a good time)!

IOH (I’m outta here)!

Prayer: Lord, thank You for giving us the time and the provisions for rest and relaxation. Give us each the focus and concentration we need when preparing for a vacation and help us to relax and be at peace once there. Amen.

You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com

What plans can you put in place to prevent feeling overwhelmed or anxious the next time you pack for                        vacation or travel?

 “Flowers appear on the earth; the season of singing has come, the cooing of doves is heard in our land”            (Song of Solomon 2:12).

Oh, the lazy days of summer and the childhood memories that each one of us has! Drive-in movies, catching fireflies, picking berries, sleepovers with best friends, riding bikes all around town, going to the beach, fishing, camping, marveling at fireworks, eating popsicles and ice cream, and spending time at our grandparents’ house doing lots of different activities.

Many adults often long for “those good ole days” when life seemed so much simpler. Days when there was no school, no work, no schedule, less pressure and lots more fun! For those with chronic illness, we also think of days when we could enjoy an early morning run, swim until we turned into a prune, rode bikes or played ball until we dropped, or camped out in a our backyard without regard for bug bites, backaches, or lack of sleep.

In reading the favorite summer memories of those participating in the Rest Ministries’ Summer Bible Study (www.restministries.com),  the one memory that was repeated over and over again was spending time with grandparents at their home doing such things as milking cows, picking vegetables from their garden, picking berries from a bush or vine, sitting on the front porch, listening to their stories, and sharing a popsicle or ice cream with them.

Are you a grandparent? Ever think that inviting your grandchildren to visit and asking them to do everyday tasks with you could be a vacation for both you and your grandchildren? They get a different routine, and you get grandchildren full of energy willing to run errands, to help with your tasks, to listen to your memories of your childhood summers, and to have adventures with you! It’s a win-win vacation opportunity that will make memories for you and your grandchildren. If you’re a parent, visiting your parents for a few days this summer could create memories for three generations of those you love.

The Song of Solomon passage above is a description of the returning of the church to Christ, after a winter of suffering and restraint. Christ also calls our bodies and souls that have been cold, frozen, and hibernating, like the earth in winter, to come forth and bloom as the sun brings spring and, by degrees, summer. It’s a time of beauty and glory and singing that furnishes occasions for joy!

Prayer: Heavenly Father, only You know what makes my soul bloom and my heart sing. As I pray about a time of relaxation and vacation, please give me some practical ideas that will bring both joy and rest within my physical and mental limitations. Amen.

You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com

If you are a grandparent, have you considered inviting your grandchild(ren) and/or children for a few days for vacation? If you are an older grandchild, have you considered spending a few precious days with your grandparents to make lifetime memories? If you’re not either, what activity or vacation would make you flourish and bring you joy?

“They will come with weeping; they will pray as I bring them back. I will lead them beside streams of water on a level path where they will not stumble” (Jeremiah 31:9).

The fatigue and squeezing feeling around my heart had now been there for two weeks. So the questions began. Should I call my doctor? If so, do I call my family doctor or one of my specialists? Is this a new symptom of one of my current chronic illnesses or is this a new symptom that needs to be evaluated separately? Is this a side effect of one of the medications? How long do I wait till I call a doctor? And on and on . . .

Those of us who grapple with one or more chronic illnesses ask these questions on a regular basis. As a result, confusion can reign and we end up shifting our focus entirely to our new symptoms or to our illness, sapping our joy, peace, and much needed energy.

What we often forget is our answers are only a prayer or a Bible verse away. We need to pray specifically for answers to the questions we have, and we need to keep reading our Bible daily as God often answers us there, with a Scripture we may have read many times, but suddenly, one that has new meaning to us.

If you are married, your spouse also can be a treasure chest of wisdom because he/she lives with you and your illness daily.

In the verse from Jeremiah above, God was reaching toward His people, encouraging them that He would restore them, and they would not stumble. But He instructed them to pray as He brought them back.

We also need to pray as we ask for restoration of our bodies, minds, and spirits. Although God may not tell us specifically whether to call the doctor if a new symptom appears, He promises to walk with us through the process and to lead us beside streams of water on a level path where we will not stumble.

Prayer: God, help us to trust that You will guide us through the many tears and the confusion that comes with chronic illness. When we have questions, remind us to stop and pray, knowing You will bring us on a path where we will not stumble. Amen.

About the Author:
Jackie Confalone lives in Pennsylvania with her “groom” of 30 years, Gary. They have 2 grown children. She “lives” with three invisible illnesses, ulcerative colitis, endometriosis, and late stage lyme disease, and each of her family members has at least one chronic illness. She feels blessed that God has used her experiences to help others with chronic illnesses.

You can now read this on your Kindle. Find out more at http://TodaysDevotionOnKindle.com

Where do you find answers when you are confused about a new symptom that appears in your life of chronic illness?

I’m on vacation at the beach this week with immediate and extended family, and I am loving every minute of it! Hence, the picture I use for my blog. I always feel better physically and emotionally when I’m at the beach, and I can sit for hours on the beach with the warmth of the sun on my body, the breeze from the ocean, and hearing the sounds of the waves hiting the shore.

But did you know that there’s some scientific evidence why many people feel better at the beach? It’s negative ions. Negative ions are odorless, tasteless, and invisible molecules that we inhale in abundance in certain environments. Like ocean and beaches and mountains. Once they reach our bloodstream, negative ions are believed to produce biochemical reactions that increase levels of the mood chemical serotonin, helping to alleviate depression, relieve stress, and boost our daytime energy.

In an article published on webMD and a few other internet sites, they state that these are a few of the reasons we see negative-ion generators being sold in stores and all over the Internet, but do they really work as well as antidepressants? Can they also relieve allergies byfiltering out dust mites and dander? It’s too early to tell for sure, but that’s not to say there is not some sound science behind the concept.

Ions are molecules that have gained or lost an electrical charge.  They are created in nature as air molecules break apart due to sunlight, radiation, and moving air and water. You may have experienced the power of negative ions when you last set foot on the beach or walked beneath a waterfall. While part of the euphoria is simply being around these wondrous settings and away from the normal pressures of home and work, the air circulating in the mountains and the beach
is said to contain tens of thousands of negative ions–much more than the average home or office building, which contain dozens or hundreds, and many register a flat zero. “The action of the pounding surf creates negative air ions and we also see it immediately after spring thunderstorms when people report lightened moods,” says ion researcher Michael Terman, PhD, of Columbia University in New York.
 
In fact, Columbia University studies of people with winter and chronic depression show that negative ion generators relieve depression as much as antidepressants. “The best part is that there are relatively no side effects, but we still need to figure out appropriate doses and which people it works best on,” he says.

Generally speaking, negative ions increase the flow of oxygen to the brain; resulting in higher alertness, decreased drowsiness, and more mental energy,” says Pierce J. Howard, PhD, author of The Owners Manual for the Brain: Everyday Applications from Mind Brain Research and director of research at the Center for Applied Cognitive Sciences in Charlotte, N.C. “They also may protect against germs in the air, resulting in decreased irritation due to inhaling various particles that make you sneeze, cough, or have a throat irritation.”
 
And for a whopping one in three of us who are sensitive to their effects, negative ions can make us feel like we are walking on air. You are one of them if you feel instantly refreshed the moment you open a window and breathe in fresh, humid air.”You may be one of them if you feel sleepy when you are around an air-conditioner, but feel immediately refreshed and invigorated when you step outside or roll down the car window,” Howard tells WebMD. “Air conditioning depletes the atmosphere of negative ions, but an ion generator re-releases the ions that air conditioners remove.”

So next time you go to the beach or mountains and you instantly feel better just being there, know that there are positive things happening to your body because of negative ions! Cool, huh?

“For you, Lord, have delivered me from death, my eyes from tears, my feet from stumbling, that I may walk before the Lord in the land of the living” (Psalm 116: 8-9).

My husband calls them phantoms. No, not “Phantom of the Opera.” The dictionary defines phantom as “a nonexistent person or thing, something elusive.” Phantoms can also be called unfulfilled dreams or lost opportunities. For those of us who have or live with someone who has chronic illness, they are our “if only” moments which often cause us to live life with regrets.

My husband was diagnosed 25 years ago with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). We had two young children, ages 4 and 1, and I really wanted to have a third child. Prior to his diagnosis, we had no idea what disease was beginning to rob his body of his health and whether bringing a third child into our family was wise. We didn’t pray about decisions at that time, and we decided that we would not have a third child.

That is one of the phantoms, or unfulfilled dreams, I live with. Our children are now young adults pursuing their own lives. There are days when I think several times about that phantom–the third child. What I would be doing, where I would be, how my role as a mother would be different. If I play it out too long, I find myself in a state of sadness, regret, and sometimes depression.

Some of you may have elusive phantoms such as having a different house, having more income, or having a better career.

God does not want us to live a life of regrets wondering “if only”. . . (you fill in the blank). He wants us to be in the land of the living. He wants us to use our pain and struggles to encourage, reach out, and pray for others with chronic illness as only we can. He wants us to trust His wisdom, to ask Him to remove the phantoms created in our human minds, and to look for His many provisions in our lives.

Today, I know the decision not to have a third child was directed by God, even though we weren’t pursuing His answer. All four of our family members live with at least one chronic illness, and God knew we wouldn’t have the physical energy or financial resources to support more than the family He designed for us. Yes, my heart sometimes still aches, but God is in the business of healing the brokenhearted and binding our wounds.

Prayer: Lord, please help us to focus on what You have provided in our lives, not what has been taken away. Heal the pain and heartache of unfulfilled dreams, and show us a purpose in our pain that will be to Your glory. Amen

How many phantoms or unfulfilled dreams do you have in your life as a result of your chronic illness? How would your life be different if you gave those to God, asked him to heal your pain, and see His provisions in your life?

About a year ago, I was thinking about my life verse, Psalm 16:8, “I have set the Lord always before me; because He is at my right hand, I will not be shaken.” As I looked it up in my Bible with the surrounding verses of Psalm 16, the references to many other Scripture passages also spoke peace and encouragement to my soul. So I wrote those passages down, and am now sharing them with you in an “expanded” version of Psalm 16. References are to the Psalms unless noted otherwise.

16:1  Keep me safe, O God, for in you I take refuge.

16:5  Lord, you have assigned me my portion and my cup; you have made my lot secure.

23:5  You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows.

116:13 I will lift up the cup of salvation and call on the name of the Lord.

16:6  The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.

Num. 36:7  No inheritance in Israel is to pass from tribe to tribe, for every Israelite shall keep the tribal land inherited from his forefathers.

16:7  I will praise the Lord who counsels me, even at night my heart instructs me.

73:24  You guide me with your counsel and afterwards you will take me into glory.

16:8  I have set the Lord always before me; because He is at my RIGHT HAND, I will not be shaken.

73:23  Yet I am always with you; you hold me by my RIGHT HAND.

16:9  Therefore my heart is glad and my tongue rejoices; my body will also rest secure.

16:10  Because you will not abandon me to the grave, nor will you let your Holy One see decay.

73:26  My flesh and my heart may fail, but God is the strength of my hear and my portion forever.

17:15  And I — in righteousness–I will see your face; when I awake, I will be satisfied with seeing your likeness.

16:11a  You have made known to me the path of life.

Prov. 15:24  The path of life leads upward for the wise to keep him from going down to the grave.

16:11b  You will fill me iwth joy in your presence, with eternal pleasures at your right hand.

80:17  Let your hand rest on the man at your RIGHT HAND, the son of man you have raised up for yourself.

15:5b  He who does these things will never be shaken.

18:29  With your help, I can advance against a troop; with my God, I can scale a wall.

18:30  As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him.

18:32  It is God who arms me with strength and makes my way perfect.

18:35  You give me your shield of victory and your RIGHT HAND sustains me; you stoop down to make me great.

I pray these words of Scripture are encouraging to you and let you know that God IS at your RIGHT HAND whenever you need Him!

Blessings,

Jackie

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ulcerative Colitis, Endometriosis, Late Stage Lyme Disease

2. I was diagnosed with it in the year: 1982, 1987, 2007
3. But I had symptoms since: same year as diagnosed for first 2; who knows for last one?
4. The biggest adjustment I’ve had to make is: take medication daily, being willing to change plans
5. Most people assume: since I look great, I must feel great.
6. The hardest part about mornings are: getting awake and moving
7. My favorite medical TV show is: none now–used to like ER.
8. A gadget I couldn’t live without is: my Healthy Back Bag
9. The hardest part about nights are: getting to sleep.
10. Each day I take _18_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: research them thoroughly and make sure God has given me a peace about them before I try them.
12. If I had to choose between an invisible illness or visible I would choose: neither, but God has used it mightily in my life to teach me, humble me, and to help others.
13. Regarding working and career: God has given me just the right job for this time in my life.
14. People would be surprised to know: that I struggle with pain and sleep everyday.
15. The hardest thing to accept about my new reality has been: I can’t always do all that I want to do.
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness: none.
18. Something I really miss doing since I was diagnosed is: Except for short period, I haven’t missed much.
19. It was really hard to have to give up: teaching certain group fitness classes.
20. A new hobby I have taken up since my diagnosis is: reading and writing….lots of it.
21. If I could have one day of feeling normal again I would: thank God for that precious gift!
22. My illness has taught me: that I am not in control and that God wants me to comfort others as He has comforted me.
23. Want to know a secret? One thing people say that gets under my skin is: You look great; you must be feeling better!
24. But I love it when people: truly want to know how I am doing and are willing to specifically pray for me.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 16:8 “I have set the Lord always before me; because He is at my right hand, I will not be shaken.”
26. When someone is diagnosed I’d like to tell them: I will pray for them, answer any questions they might have, get as educated as you can about your illness and treatment, and find a doctor who will treat you as a “whole” person.
27. Something that has surprised me about living with an illness is: I’ve had to rely on God’s strength more than my own.
28. The nicest thing someone did for me when I wasn’t feeling well was: made me a meal (I don’t enjoy cooking much even when I feel great!).
29. I’m involved with Invisible Illness Week because: we have 4 people in our family and each of us has at least one chronic invisible illness.
30. The fact that you read this list makes me feel: grateful and thankful. Thanks for reading and thanks for your prayers!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

The Tablets of Our Lives

            Trying to restrain the tears in his eyes and the quiver in his lips, he prayed aloud as he held our son’s hand, “Lord, I pray he remembers his heritage as he builds his legacy.” And with those words, my husband and I released our 21-year old son to pursue his graduate degree in Tennessee, and we prepared to drive the 600 miles back to Pennsylvania.

            Habakkuk 2:2 states: “The LORD replied: ‘Write down the revelation and make it plain on tablets so that a herald may run with it.’” It was over fifteen years ago that I felt a clear call from God to write. I was brushing my teeth just after taking my children to the bus stop when I believe I received this clear revelation. However, being a new Christian and believer, I was not confident of the calling. So I prayed, read the Bible, and discussed it with more mature believers, and God did confirm the call in several ways.

            I put my fingers to the keyboard and wrote the introduction and first chapter of a book that the Lord had laid on my heart. I gave my very rough draft to several friends, mature believers, and my husband (my greatest encourager and constructive critic), and made edits based on their input. And then those pages sat in a binder to this very day. My children were age six and nine at the time, I was at home full-time, and I was very involved in their school and their lives.

            Over the past fifteen years, I have written many handwritten notes of encouragement, typed many articles for newsletters as well as whole newsletters, and worked part-time at the publications office at our local school district, but I have not had any of my writings formally published. There are times I have been very discouraged about this and have asked God to help me with this “ministry” since He was the One who laid this on my heart years ago! I tend to be an inpatient person, but my husband just kept saying, “Wait on the Lord.”

            Upon first reading Habakkuk 2:2, I took the word “write” literally as words written on an ancient scroll, penned on paper, or typed onto a computer screen. However, when my husband prayed those words over our son, God spoke to my heart and said “You have written My revelation on your children’s hearts for the past fifteen years and they are My tablets who will run with it.” Years of discouragement, fear, and disappointment over my not having any writing published for Him vanished as I realized the energy poured into our two children has been my “writing ministry.”

            Our daughter married a godly young man last July and in May, they moved to Virginia, where he has been called to be a youth pastor at a church plant and she is teaching literature to high school students in a private Christian school. Working with youth in ministry and at school, they will be attempting to make God’s Word plain on the tablets of these youth’s hearts so that they can run with it.

            After a few difficult teenage years with our son, God has graciously allowed us to see a lot of emotional, mental, and spiritual maturity in him this past summer. He finished college in three years with a double major and is enrolled in an MBA program in Tennessee. God has blessed him with intelligence, a quick wit, and a compassionate heart. Saying goodbye was very difficult, but we know that he will be a herald who will run with God’s revelations to many people.

            In I Corinthians 13, love is the theme and the apostle Paul writes that without it, the gifts of speech, prophecy, faith, generosity, and hope will all cease, be stilled, and pass away. Paul says in I Corinthian 13:1 that love is the most excellent way. As writers, whether we write our revelation on paper, online, or on the hearts of others, we need to first reflect Jesus’ sacrificial love and then make it simple and unadorned so that the “heralds may run with it.”