Faith Through the Journey

The Legacy

Tonight I was looking at pictures of our three children. They are adults now, amazing people in their own right. My husband and I are incredibly proud of them and so grateful that they are in our lives. There were people in the medical field who believed that it was best, for my present and future health, not to have children.  In our minds, we found that “advice” to be unthinkable. From the early days of our relationship, my husband and I wanted children and, during the years I was in remission from the Crohn’s Disease, there was no reason for us (at least in our minds) not to have children. By the grace of God, I was able to deliver three healthy children; in fact, I was extremely healthy during those pregnancies. Our third child was born after my first surgery, the one where at least one of my doctors thought I should have a tubal ligation. In faith we had our third child 2 years later, and what a blessing she has been to us. She has looked into the faces of children in the Bahamas and Kenya,  Africa as part of a missions team, and I wonder what their lives would be like if she had not been contact with them. In the same way, our older two children have touched many lives, and I know their spouses cannot imagine their lives without them! The joy of watching them grow up and make contributions to the world cannot be measured.  More than once I have asked God to give them a healthy mom, one who would not be constantly ill and who could always be available to them for whatever their needs were.

And yet, as much as I worried that their childhoods would be marred by having a sick mom, I “forgot” that God was able to use my illness  to do a work in their lives as well. They have learned compassion for others, faith to trust God to take care of them whether I was with them or in the hospital, and they have learned to pray in every circumstance, confident that God would hear and answer them whether they liked His answers or not! Having three wonderful, smart, caring children is a blessing that cannot be measured. We are SO glad that we didn’t  listen to doctors who encouraged not to have our lives “complicated” by raising children! They are our greatest legacy, for they will touch the lives of people that we will never see.

What is the Right Question?

For all of us, there are times in our lives when we want to know “Why?” We think that if we can just have that question answered, we might be able to better understand what is going on in a given situation. I have asked that very question a number of times during the last 38 years, and to my dismay, the answer has not come.

At one time a number of years ago, someone wiser than I has said that if God hasn’t answered my why questions, I may be asking the wrong question. We can make our lives miserable with seeking a meaningful answer, and in so doing we can become bitter and angry if the answer does not come in the way we think it should. The real question that we need to pose to our Creator is this: What do You want me to learn from this difficulty? Are You going for something in my life or the lives of others through my present trials?  God always answers our prayers, even when we may not  like His answers!

This concept was very liberating to me…I just need to ask God the “what” question and leave the “why” with Him. I may never know those answers this side of heaven, but whether or not God chooses to show me, I will seek to live one day at a time and be grateful that He has given me another day of life.

A Crohn’s Kind of Day…

These are the kinds of days I really hate having this disease. In the many years I’ve dealt with this, I’ve kept track of where restrooms are in every store, restaurant and hotel lobby. Today I was thinking about the day we went to the Tournament of Roses Parade and the Rose Bowl game–January 2 of this year. Being in crowds that large and being desperate to find a restroom is one of the “joys” of this disease. Before we went to our seats I made sure I knew how to find the closest ladies room and by the end of the game, I could get there in record time! The only real moment of panic came when they closed it a few minutes before the game was over… They redirected me, much to my relief. Then we waited, and waited, and waited some more with 94,000 of our closest friends to get onto the shuttle buses that would take us to our cars. There were no restrooms on the buses… My doctor told me I should have pushed everyone else out of the way to get to the front of the line! It just wasn’t in me to do that, especially when no one really knew where those lines began and ended. With fans from both teams waiting in line and the game having been a very close one, I was afraid it might cause a riot if we tried to get to what we thought was the front of one of those lines! In spite of having one of “those” days, it was a really nice memory for our family.

We are very hopeful that my interior landscape can be repaired again soon so that I don’t have very many more of “those” days. Because of  multiple surgeries my system will never be like “original equipment” but having less pain and a nearly normally running digestive system will be a great deal better than what I have now. When we get to heaven, I hope we won’t have need of our digestive systems. If we do, I know I’ll get a brand new one–with no Crohn’s Disease!

Parenting Through The Tough Times

Mayo Clinic is an amazing place. Here there are people from all walks of life, all different ages, all different sizes and nationalities. All come here seeking help and hope for physical illnesses or conditions that have gone beyond the knowledge of those treating them in their own home towns. The fact that there are these kinds of facilities available to us here in the United States is indeed a privilege. One of the “codes” used by personnel for patient identification is for the patient to give their name and birth date every time they present themselves for appointments. While not intentionally eavesdropping, we did overhear those codes periodically. Each time we heard a birth year that matched one of our childrens’, we looked at each other and felt badly for them, knowing that they were there to receive the same kind of treatment we were seeking. Then one of those dates hit home: the patient was 18, the same age I was when I was first seen as a patient at Mayo Clinic.

At the time I was first diagnosed with Crohn’s Disease, I’m sorry to say that I didn’t really think about how my parents must have felt. Now that I’m a parent, I realize how hard it must have been for my parents to watch me suffer with this illness. I guess it was really better for us not to know the long-term prognosis of Crohn’s patients at that time. My parents probably wouldn’t have let me out of their sight! Parents want to protect their kids from any difficulties, although we know that’s not possible. I didn’t want anything to stand in the way of my future plans, so I took the medicine they gave me and went on my way to college, halfway across the country from my parents. I truly do not know how my mom and dad let me go, other than the fact that they loved me enough to let me go on with my plans instead of forcing me to stay home and letting them take care of me. The larger reason is that they knew I would never be alone, whether I was in my own bed or across the country from them. I know that my parents’ prayers carried me through many times of difficulty and it also kept them sane, choosing to place me in God’s capable hands when they couldn’t be right next to me. My dad is already home in heaven, and I wonder if he has asked God why I have this illness. I know he would have traded places with me in a heartbeat if he could have–so would my mom. And so would I, if it meant I could keep my children from pain. That’s what parents always wish they could do. But sometimes being a good parent means praying your children through those hard life lessons and letting them learn what God is trying to teach them without our interference. I never understood that parents suffer as much as their children do when there are those life crises. I was blessed with two parents who taught me that the first place I should go for help is to God Himself. I hope we have taught our children the same!

Crohn’s Disease Is Not Glamorous…

Yesterday was difficult for us here at Mayo Clinic. It was a long day, longer than we had expected to have, and the doctors’ reports, while not unexpected by us, were not what you would call welcome. They confirmed the fact that Crohn’s has again done its damage in my digestive system, and that the best prognosis they can give is that they may be able to help induce a remission that may give me some good years, although there’s no way to predict how long that may be. When hearing that news, as we have other times before, it takes awhile to process and come to terms with what will be the course of treatment. Whatever God requires of us, He will equip us to do. In even small details of this week, He has gone before us and shown us that He does care about those and that they haven’t escaped His notice.

Today I can see a lighter side of things. Over the 38 year course of dealing with Crohn’s Disease, I have become rather immune to things that would probably cause even the strongest stomach to lurch. Often I have asked why I couldn’t have bad knees or some other illness that you can discuss in polite company. For those of you who may have bad knees or one of those afflictions, I do not make light of your situation and know that your pain and your journey has been just as arduous as mine has been. During the times when my pain is being well controlled and I’m not lying down groaning somewhere, the absurdity of what I’m asked to do can strike me as funny. I will not go into detail (for those of you with delicate sensibilities!), but with an “intestinal inflammation” there are some rather indelicate conversations, procedures, collections and preparations that have become routine for me, but to someone not used to dealing with them on a daily basis, would not be polite topics of discussion at a dinner party! Reading instruction pamphlets, directions for using a certain product correctly, or even certain illustrations make me laugh hysterically (I have to do what?! You’ve got to be kidding!!). The human body is indeed an amazing thing, and certainly not a random collection of atoms. Having all of the systems work together is truly miraculous, something we take for granted as we go about our normal daily lives. When one of the systems is out of whack, it does affect the others. I never thought of pain as a gift, but it is the mechanism with which God has created our bodies as a warning that something is wrong somewhere. I need to be better about thanking God for the days when most of my systems are in working order! Without pain, I would not know that my digestive system is not in good working order and would not seek the help that is available for remedying that pain, even if that relief is a fleeting thing. For however long I am granted a reprieve from pain, I will be grateful for those who have figured out how to help people like me!

Running the Race

Another milestone along this pathway… Today we began a visit to a world-renowned medical center, meeting with a specialist who sees long-term Crohn’s Disease patients on a regular basis. Between my husband and I, we were able to give him an accurate picture of how really desperate we are for help beyond what others have been able to give us. I suspected that the doctor would need to repeat some tests, and that is what we will spend the rest of the week doing, in order to give him the most complete picture of my current condition. With the preliminary treatment options he put in front of us, we know that this is indeed a marathon. That’s not a new concept for us, but once again we’re reminded of the insidious nature of this beast. Any time you deal with Crohn’s Disease, you accept the fact that it is a lifelong illness. Every time a remission is induced, we need to celebrate the fact that, for now, this doesn’t need to be center stage in our lives.

In processing the events of today, it continues to be evident that, for whatever reason, God is not done using this disease in our lives. To even think that I can live one day without depending on Him is ridiculous. No matter how well I feel on any given day, once again I need to remember from whom my strength comes. My wonderful husband is supporting me and being strong when I’m not, and together we know that one day at a time is the only way for us to live. The Apostle Paul asked God to remove his “thorn in the flesh”, and God’s answer was to give Paul grace that would be sufficient to face every day, and that His strength would be perfect in Paul’s weakness. God used Paul until he drew his last breath, and I know that if He chooses that route for me, I will be incredibly humbled and honored. He will be my sufficiency and bring honor to Himself through my life–if I run this marathon with His grace and strength.

Thank You!!

Today we have been overwhelmed and humbled by the outpouring of love and support we have received from so many of our precious frieds and family. Tomorrow we will be seeing a doctor who specializes in long-term Crohn’s Disease patients who haven’t been helped by any available medications or therapies. We feel somewhat anxious tonight, not knowing exactly what the doctor or doctors will tell us, and what the future may hold. We know that many of you have been praying for us and will continue to pray with us through this journey. We will leave it in God’s hand..He’s still in control! “Our God is Healer, awesome in power…”

A Worthy Woman

Today I was looking at Proverbs 31, one of my favorite–and convicting–passages of Scripture. The topic covered is the quality and character of a virtuous woman. It always challenges me and today I was reading the chapter in The Message, a more modern paraphrase of the Bible. Several phrases stood out to me: “She senses the worth of her work, is in no hurry to call it quits for the day.” Some of my most important “work” has been completed, the raising of my children. There were many days I wondered if my efforts were making any difference, and yet as they have entered adulthood I can see that my “work” has been highly worthwhile. And yes, there were days where day blended into night and my day was not concluded. Now that that part of my life, while not necessarily complete, doesn’t occupy the majority of my days, I have tried to find other “worthy” work. I am incredibly blessed to continue being a homemaker, and I have to say my days are still filled with things like experimental cooking (thanks to my gracious, polite husband), sewing whatever I want, working as an election official, and supporting my husband in his “real” job, the one that pays the bills, and his volunteer job as chairman of our county’s Republican Party. The next phrase leads into that idea exactly: “Her husband is greatly respected when he deliberates with the city fathers”. I am always extremely proud of my husband, and he is well respected by every group to which he belongs or with whom he works. The last, and most difficult one to live up to, says: “When she speaks she has something worthwhile to say, and she always says it kindly”. Oh my, that IS hard to live up to! I would hope that, with age and experience, I have learned to some extent that I  need to always think before I speak, and to do so with kindness and not criticism. I am so thankful that God still wants to refine my life and that He isn’t going to give up on making me the virtuous woman He wants me to be.

“From the rising of the sun to the going down of the same, the name of the Lord is to be praised.” Psalm 113:3

“Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139:23 & 24

Whose Fault Is It?

For years before I was diagnosed with Crohn’s Disease, I had what was thought to be a simple “nervous stomach”.  Since no one could come up with a reason why I kept having the issues I did, it was downplayed and even my doctor would look at me with skepticism when I continued to have symptoms. After a number of years, my doctor finally did some tests and lo and behold, there WAS something wrong! I was so relieved to learn that I wasn’t imagining it or making it up.

The good news was that whatever was wrong with me had a diagnosis and a name. The bad news was that the origins of the illness were unknown. I went to a major research clinic. and at the time, the best explanation they could give was that it was a psychosomatic illness. Even though they could point to an x-ray and see it was there,  they continued to treat it is a personality-related illness. My relief was short lived in having a diagnosis. According to the best medical minds in the country, if not the world, people with Crohn’s Disease were making themselves sick because of their personality type: high achievers, perfectionists, driven to meet their own goals, i.e. Type A people. Doctors could give medication to calm the inflammation it caused, but there were no guarantees about the future. It was another 14 years before I learned that this is an autoimmune disease, my body attacking itself. While my medical condition at that time was very serious, the biggest weight was lifted off of me: I was NOT doing this to myself!

Today there have been many advances in diagnosis and treatment, and there are medications available to induce remission of the disease. The biggest mystery still remains: who gets this illness; why does it disappear and reappear spontaneously; why do medications do wonders for some patients and why do those same medications make another seriously ill; and on the questions go. I’ve accepted the real possibility that I may never experience complete and total healing here on earth. While medication and other treatments may work for a time, I don’t have any realistic expectations that the outcome is permanent. The most important thing I know, and have known since the day I was diagnosed, is that I will NEVER have to go through this alone. I have been tremendously blessed with a loving husband, family and friends.  Yet the One I cry out to during the dark nights of my soul will carry me through every time I need the strength I do not have. How many times will I say thank you to Jesus, both here on earth and when I meet Him face to face? I don’t think I will ever be able to express my gratitude to my Savior adequately, yet that is the only and best thing I can do. So, thank you, Jesus, for going with me all the way through this journey!

 However, I do know that I will never be alone in the midst of the recurrences

Whatever It Takes

We will soon be going to a world-class medical facility, a true answer to prayer since we were able to get in so quickly. We have a wonderful medical “team” working for us here in San Antonio, and they gathered the data the center needed to facilitate our acceptance. We have people praying for us from coast to coast, literally. Everything is in place… Now the hard part begins.

Having been at this as long as I have, the mental and emotional aspects of chronic illness can be almost as wearing as the physical ones. Before we FINALLY found a medication that would give me pain relief, I was ready to give up. Living in pain 24/7 was just too hard to live with any more. Enjoying life and being in constant agony are mutually exclusive; you can’t do both for very long. Thankfully I haven’t had nearly the pain I’ve been in for the past 2 months. I know this is a short-term fix; eventually I’ll need to stop taking that, too, and we still have the original problem to deal with: the progress of the disease. Then, of course, there is the very real possibility that I will need to repeat all of the tests again so the doctors can see the most current data. I believe I have ingested enough barium so that one day I will glow in the dark, and then there are the needles: drawing blood and starting IVs can cause me to have black and blue arms for a week. Thankfully there are some tests for which I can be anesthetized, but the preparation for those exams are legendary for their cruelty to the digestive tract! If I must, I’ll do them but it’s not willingly!

Then there’s the aspect of treatment. We’ve exhausted the currently known available medications and are going to the research facility for any new remedies that might still be in the experimental stages. Are we ready for whatever that might be? Will it change our lives? What might be required? We have to be ready for that, even though the fear of the unknown is rather daunting. Are we willing to do whatever it takes?

The spiritual aspect, for me, may be the hardest. Will I trust God to go for whatever He wants to do in me, in my family? Will I listen for His voice and not be tempted to lean on  my own understanding? And what if the hardest thing of all happens: that there are no answers, that we’re no closer to finding treatment than we are now?  There are 2 options, to go it on our own or believe that God still has a plan. For us, there is only one choice. We will choose to continue to trust our loving Heavenly Father. We cannot do otherwise; where else would we go? There will never be a place where we are more loved, more cared for, more strengthened and encouraged than in the loving arms of our Creator. He knew all of my days before one of them ever came to be. If God is for us, then who can be against us? Whatever God is going for, we’re in. No turning back!