Category Archives: Health & Wellness

Why I Spend More for Less Ice Cream

I’ve been accused of being from out of town. After all, who else would have an app for all the local grocery store chains and be able to shop savvy in the middle of the only incorporated town in all of Marion County, Texas? Yes, I’m that kind of person. I like to save when I can.

Am I an extreme coupon clipper? No! I did research on that and found out that part of the way they get their coupons is by getting online, finding coupons that are being used for a particular market for introduction and evaluation and changing their zip code to match so they can download that coupon. In other words: that $2 off coupon is only good in the Northeast where they are doing some market research, but if you change you zip code to a northeast zip code, you can get one of the coupons. My ethics won’t allow me to do such things. So, I save where I can and budget and do my best. I play the balancing game between how much my time is worth, how much gas would be spent going to different stores compared to the amount of savings I would get. It’s what you have to do when you’re on a budget!

So when in the world do I spend more for less ice cream? The answer is simple. I love my daughter.

Greta is going through that puberty phase where some girls get rail thin and others get pudgy and round. She’s going for pudgy and round. She’s also emotional, thanks to ADEM, so she gets attached to foods she loves and is sometimes a stress eater. Let’s see, her brother left for college and we are relocating to Mississippi. Nope, no stress in this household. On top of it all, Greta is dealing with habits and appetite binges she developed when on a huge dose of steroids to save her life during ADEM. She’s got a lot of things going against her right now. She needs all the help she can get. So I buy more expensive ice cream.

I’m not talking about buying the generic store brand versus those that claim to be the best ice cream in the country. I’m talking about spending more to buy those prepackaged ice cream cups. Greta loves ice cream! It’s a love language for her and it helps to calm her down in the middle of one of her ADEM mood swings. But I can get much more ice cream for my money if I just buy a half gallon of it and everyone scoops their own. That’s the problem. Greta scoops out way too much. Actually, we all do!

So I’ve come to the point where spending more money, to get the smaller and already packaged cups of ice cream is the best thing I can do to help Greta learn portion sizes with the treat she loves so much and gives her so much comfort. If you’ve ever been through a life threatening situation that leaves you emotionally scarred, you’ll understand how important it is to have a comfort item in your life. So yes, that’s why this budgeting and saving mom spends more for less ice cream. I look at the heart of the matter – a little girl going through so much at one time and I decided she’s more than worth it!

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Filed under ADEM, Family, Parenting

What Tools Should You Have in Your Toolbox?

If you hang around neuro-psychologists long enough, you just might pick up a couple of their phrases. Going through the evaluations, various testings including follow-up MRI’s and so forth with Greta’s Acute Disseminated Encephalomyelitis (ADEM), we’ve spent some time with a great neuro-psychologist. One of her phrases that we love -Tools for your Toolbox!

Basically, this doctor, who is a favorite among all the kids and parents because she is just so awesome, says her goal is to make sure Greta has enough tools in her toolbox to handle dealing with ADEM in day to day life. Now nearly three years after that terrifying ordeal of seeing my little girl hospitalized and hooked up to all kinds of things, I realize that tools in the toolbox can apply to any of us. I’ve also seen that we’re a lot happier when we embrace this.

I’m getting ready to send my firstborn off to college. He has his own issues that he deals with, like being an intense introvert and being addicted to his routines. Seeing him being forced by circumstances to change his routine is like watching ants that have lost the line. So yeah, I’m a little nervous for him, but I’ve taken on Dr. Harder’s mantra and I’m doing everything I can to make sure that Michael has the tools he needs in his toolbox to deal with life as a college student hundreds of miles from home.

So what tools should you have in your toolbox? That’s easy, the ones that help you cope and deal with life – in addition they should be legal, moral and ethical. That usually helps. While there will be similarities, there will also be tools that will be different for each person. Greta, being very literal now and decreased math skills due to ADEM, needs tools to help her remember to ask people to help her when she doesn’t understand something. She needs to tool of asking others to slow down and help her until she gets that joke, because she’s so literal.

Michael, the extreme introvert, knows he would rather do just about anything before talking on the phone to anyone. So a tool in his toolbox is going to be a good friend willing to make a phone call when he can’t.

What tools should be in your toolbox? Find those things that help you cope with life and deal with the day to day stresses that living on planet Earth serves up on a regular basis. The amazing thing is, you’ll usually find tools for your toolbox in your family, church, community and friends.

 

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Jumping Ahead

When you are used to being active and involved in everything, being sidelined is almost a fate worse than death. So you can imagine my anticipation and eagerness after a corrective surgery to get back on my feet and get back in the game. Oops, a little too soon and a little too fast.

The good news is that the evil adhesion mass has been removed and once I fully recover from the surgery, look out world here I come! I’ve longed to do so much that my hunger and thirst for it drove me harder, faster, more – and just a little bit of overdoing it.

There are things I’ve promised myself – no more sitting around and doing nothing! Getting out and doing things again and saying yes to more invitations. But I’ve come to realize that being sidelined has an impact on more than your physical ability. It creates new habits, new routines, new ways of doing things. I’ve already faced a couple of situations where activity was available, but the habit of staying home and drawing into myself reared its ugly head and sometimes won out.

The biggest battle I face now may no longer be physical pain, but the kind of life I accepted while I was in so much pain and whether or not to continue coasting along. God give me strength to no longer find coasting along as acceptable!

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Filed under Community, Healthy Lifestyle

Saving Supper

For the past 13 months, pain has been a way of life for me. During that same time period, picking up the slack and taking care of me has been the way of life for my husband. But it’s nothing new. I picked a winner.

Karl and I attended a small Christian college in central Texas where the cafeteria hours were unmovable – even if it conflicted with a class. Seeking a bachelor of arts degree, I had to take foreign language and I chose French. It just so happened that French class got out five minutes before the cafeteria closed – and it was on the opposite end of the campus. Enter the hero – my boyfriend who became my husband.

Karl would eat supper then go back through line and get a tray for me, he arranged it with one of the cafeteria workers he had befriended. The entrance door would be locked, but I could knock on the exit door and Karl would let me in and I got to eat supper. For someone with digestive problems caused by Crohn’s Disease who has to eat three regular meals a day – no snacking – this was a lifesaver.

My husband continues to be my hero. I am grateful.

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Filed under Crohn's Disease, Family, Marriage

Redemption Chocolate

This weekend I came back from the marriage seminar that Karl and I presented, to find an absolute mess in the kitchen and two boys still in pajamas. Lovely. The girl was nowhere in sight. She went to hang out with friends on the block instead of hanging out with her brothers that were doing nothing but living in pajamas all day. Can’t blame her for that one.

Last night, I was presented with a box of my favorite chocolates by the oldest. Michael made a big deal of it. I told him he had redeemed himself. The funny thing – he got the chocolates to say that he knows I’m going through a lot physically right now and he can see it’s really rough on me – yet I still do all the mom stuff. He smiled sheepishly that it wasn’t apology for the mess in the kitchen.

To me, it doesn’t really matter. Just the thoughtfulness of getting the chocolates for me. How often does a teenage boy go out of his way to buy expensive chocolates for his mom – when it’s not Valentine’s Day yet or Christmas or birthday or anything like that? I consider myself blessed. I savor every bite of my collection that includes Ferrero Rondnoir, Raffaello and Ferrero Rocher. Sweet!

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Filed under Crohn's Disease, Family, Parenting

What She Found in the Closet

Personality. My daughter has it. In fact, she has so much personality she has little time for things like cleaning her room on her own. Personality people love group activities and let’s face it: cleaning your own room isn’t a group activity. Greta loves to help in groups and will be the first to volunteer and she’s great at cheering on the team. That’s why we love personality people.

But her room is still a mess and the boys don’t wan to make it a group activity that Greta will love and help their little sister out. So we bribe them. Matthew is paid to work in the room for a while. Greta is thrilled to have company on doing a chore and the room gets cleaned. We gloss over the arguments and chalk them up to simple sibling rivalry.

The next morning, Greta came out with a huge smile and one of her recently rediscovered treasures, found deep in the recesses of her previously hideous closet. It was an envelope full of homemade cards from the kids at her school – from when she was in the hospital. She came out waving the envelope and shouting to the world:

See mommy, people do love and care about me.

Of course I responded that I never had any doubt and smiled, and tried not to cry, as Greta read card after homemade card from different schoolmates expressing that she get well soon and how much they loved and missed her. It’s been two years since our lives changed and ADEM came to our home, but those words of love and encouragement still found loving reception in Greta’s heart, and mine.

I told my class at church – I wish everyone could go clean their closet and find an envelope full of the love and encouragement folks have given them when they went through a difficult time – and remember that people still love and care about them. Go ahead, right now. Go clean out the closet of your memories. Don’t dwell on the obstacles and hurts. Remember the love and support of those who stood by you and perhaps even carried you through that time. Like Greta, hold those precious memories high and say to yourself that it’s true! People still love and care about me!

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Filed under ADEM, Community, Family, Parenting

You’re Thankful for WHAT???

Long. Difficult. Discouraging. My Crohn’s journey has been all of this and more. But this week, I actually thanked God for my Crohn’s Disease.

Trust me, I know you’re thinking “what in the world?” right now and I get that. I was too at first. But I’ve been studying and praying a lot about issues in life. I’ve seen how being weak and having to depend on God’s grace has taught me to not be so much thinking that I could do it all myself. That’s my personality. Just tell me I can’t do something and I’ll prove to you that I can!

I came to the realization that the convenience and comforts of this life were far more important to me than I wanted to admit. I was so focused on having a “dream come true” life right here and now that I wasn’t really planning on the eternal life spoken of so much in the Bible.

Do I wish I get could get through a day without pain? You better believe it! No more fatigue, anemia induced hair loss or plaguing side symptoms of Crohn’s Disease? Of course! But I already have that promised to me. There are a lot of other folks out there that don’t have any hope whatsoever. They look at the crazy mixed up world around us and think this is all there is. And that’s a pretty pathetic outlook on life.

So I’m going to quit spending so much time praying for healing and understanding why I have to suffer with Crohn’s and focus instead on the fact that I know of a future without Crohn’s. I know of a future without death, suffering and pain. And it’s about time I shared this hope with others who need to hear it.

Pity party over. Time to spread some good news. This isn’t all there is. You can have more. It’s yours free because of something called amazing grace!

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Filed under Crohn's Disease, Spirituality

The Forgiven Restaurant

There is a saying that goes something like this: You fool me once, shame on you; you fool me twice, shame on me. No one likes to be snookered. Those who have been burned once often make sure they can’t be burned again. Who can blame them? I was determined not to get burned twice – at a “terrible” restaurant.

I have been a vegetarian for more than 20 years. I can assure you, that unless you lived in some “pocket” of vegetarian population, there just weren’t many options for vegetarians 20 years ago in restaurants. Grilled cheese or Mac&Cheese are good fail safes for most, but since my body can’t process cheese (thanks to Crohn’s surgery), I had even less options than other vegetarians. The last thing I needed was to eat at a restaurant that insisted on penalizing me for getting my dish without the meat.

That’s exactly what happened one day at lunch with my coworkers. I asked for a salad without the meat. I’m willing to pay the full price still, I just don’t want the meat. The server told me I would have to pay an upcharge for the change. Seriously? You guys can use that meat for something else and I’m going to pay you to do that? I bit the bullet and ordered the salad so my friends and I didn’t have to find another restaurant on our already short lunch break. But the restaurant made it on my list of places never to return to service.

About a year ago, a “Get Healthy Marshall” program came to town. Many experts came talking about the health benefits of a simpler, plant based diet. The Mayor of Marshall, Texas, was all for it as he had seen his own health issues improve after adopting a more healthy lifestyle. Several restaurants in town went public with offering special menus to be in accordance with the new “plant strong” lifestyle. And it is very popular in Marshall, Texas!

Karl and I went for lunch today. To the “terrible” restaurant as they are now on the list of establishments offering a healthier fare. I went with full knowledge that a “better” restaurant down the street was available if this terrible restaurant still tried to penalize people for being vegetarians. The options were few. Other restaurants have a lot more plant strong offerings, but it was delicious! The atmosphere was perfect for our lunch and the service was spot on. When paying for our meal, I told the owner about giving her restaurant a second chance and being glad that I did.

When she heard my story, she admitted that whoever had insisted on charging me extra for leaving off the meat was probably someone without much food service experience and who didn’t work for her for very long. She was grateful that I had given her restaurant a second chance and thrilled that we enjoyed our experience there today.

I walked out of that restaurant having no desire to carry a grudge about what had happened in the past, and thankful for grace. I gave that restaurant grace and a second chance. But God had given me grace, extended forgiveness to me when I was unforgiving toward others that had harmed me. God reminded me that I’ve had my share of second chances.

Was there a risk that I would have gotten “burned” again? Of course. Life is full of risks. But God risked everything to extend grace to me. I’m glad He prompted me to extend grace to this restaurant. Besides the beauty of forgiveness, I tasted one of the best veggie sandwiches ever!

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Filed under Community, Health & Wellness, Healthy Lifestyle, Spirituality

I Used to Dance

A friend of mine has recently done a very wonderful, yet very brave thing. He openly admitted he has recently been struggling with depression. Kudos to you friend. Not an easy thing to bring to the forefront. Most of us prefer to stay in denial.

Crohn’s Disease has taken its toll on me, but depression was one of the areas I refused to allow it to take me. But it did. So I did the only thing I knew I could do, deny it. It wasn’t easy to see at the time and I’ll admit, it is still a struggle for me. I’m not a sit on the sidelines kind of person. I’ve always been right in the middle of stuff enjoying life to the fullest. Being sidelined by a disease has been attacking me at the very core of who I am and who I always thought I was.

A patient God and a very loving husband and family have been going through this with me. Karl is actually glad that I’m finally admitting how much I had struggled during some of my lowest points with all that Crohn’s has taken from me. The best way I fight back? Finding every single way I can enjoy life to the fullest again – no matter what others think. I suppose it is best summed up in my thoughts that I shared with my friend.

When a child hears a happy tune – they giggle and dance for joy. When they get a favorite toy – expressions of happiness unlimited. When they see someone hurting they are ready to give all – immediately. Being an adult really sucks because so many people tell you to grow up. But I was much happier when I giggled and danced and gave all I had.

Crohn’s still gives me bad days, but I’m determined to giggle, dance and give like a little child, because life was meant to be lived happy and abundantly!

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Filed under Community, Crohn's Disease, Health & Wellness

Underlying

Arthritis. Yuck.

As I continue to engage in this war with Crohn’s Disease, I do end up in battles with arthritis. Crohn’s drops arthritides into the bloodstream and so my Crohnies and I can get Crohn’s induced arthritis. Not fun.

What I learned from my Rheumatologist yesterday is that the Crohn’s ulcers themselves do not have to be active and flaring in order for the arthritis to be active and giving me grief. In other words, the underlying cause of everything doesn’t have to be visibly active in order for some of its spinoffs to be actively attacking my body.

Reality check. I had no clue. I thought it was all or nothing and that I just didn’t have tons of ab pain whenever one of the other Crohn’s symptoms was manifesting itself. Nope. They can creep up at any time, even when the main culprit appears dormant. So right now I’m applying this little nugget to life in general. Hits me like a brick.

How many times have I thought things weren’t so bad because the main thing wasn’t going nuts? How many times have I put up with little relational issues that were stressful and harmful, because I thought the real big relationship killer wasn’t that active right now, so I could handle this other stuff? The reality is that even if the big bad issue isn’t “active” it is still what is feeding and prompting all of the little things.

Time to take a careful look at what is plaguing me. Time to stop jumping from one side issue to the next and focus on correcting the one underlying thing that is spawning it all. This isn’t going to be easy. God give me grace.

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Filed under Community, Crohn's Disease

Easy to Forget

I’ve written before about how grateful I am for finding someone or a group of someones who can understand what you are going through – community. It hasn’t changed. Recently I put a question to the ADEM group on “Ben’s Friends,” a website dedicated to connecting people with rare diseases, including ADEM, about helping friends understand.

The response from a man in his 50’s was just what I needed to hear. He’s been through what my little Greta is going through, but as an adult, he can express his needs a little more reasonably and in the typical “adult” manner than Greta can right now. His advice helped me a lot. His kind words to Greta were that she had nothing to be embarrassed about. All she had to do was ask people to slow down a little or go over something again, it’s not a crime to ask.

I thanked him and told him that even Karl and I can forget at times that Greta needs a little extra help here and there, because everything looks so normal on the outside. He wrote back that his wife has the same ordeal. She’s so grateful to have her husband back after he had been through and had to relearn to do that sometimes it’s easy to forget that he still struggles sometimes.

When everything looks “normal” on the outside. It’s easy to forget. It’s easy to forget that there are still things on the inside that trouble us and make us need to ask for a little bit of extra help. The problem is, we get tunnel vision. We see “normal” so much that we aren’t always prepared for the after effects of ADEM to rear their ugly head and we have to slow the train down and adjust. It catches us off guard. Because we are human and it is easy to forget.

Praying that when I’m jarred back to the reality of ADEM and the fact that life will never be “normal” again; that it doesn’t take me quite so long to adjust each time. Perhaps there are others in my community, my circle of friends that also need me to pay attention to when they need a little extra help. There are many out there that need us to be prepared for anything – not easy to forget.

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I Need a Tire and a Sledge Hammer!

There are a multitude of movies that explore, in one flavor or another, the fantasy of a world where there is no anger, lust, frustration, hatred or jealousy. It’s the usual, and futile, quest for Utopia, often an old B Movie, but modern ones exist as well.

The fact of the matter is that these things are very real human emotions. A future world where there is no undesirable emotion displayed can only mean one thing: look out because one of these days it’s going to blow! Things kept bottled up inside result in high pressure and highly volatile environments. In no way am I advocating wrong methods of displaying some of these emotions, especially anger. But there are other ways to take out your frustrations instead of harming yourself, others or property.

Today, I want to put my squatty fingers on the throat of Crohn’s Disease and strangle it until it breathes no more. But since that would be a not appropriate display of my frustration with this autoimmune disorder, I shall have to find a better way to vent my hurt and frustration. I’ve heard that tires and sledge hammers are a great way of getting out anger.

Wait a minute. Crohn’s has left me with little strength or energy today. I guess I’m back to strangling. While I’m at it, I’ll try to get rid of all the other autoimmune disorders as well. Couldn’t hurt.

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At Peace or War

I’m really enjoying the Creation Health classes I go to every Thursday. Our topic today was rest, emphasizing mental and spiritual rest as well as the expected physical rest. Did you know that losing 3 hours of sleep a night can cut your immune system in half? Adequate rest is so vital to our health.

When it came to spiritual rest, the Creation Health plan describes it this way: spiritual rest is being at peace with God. We were asked to say what that meant to us. My mom, also in the class with me said it best.

If you’re not at peace with God, then you are at war.

Where are you at in your spiritual rest? Are you at peace with God? Or are you at war?

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Filed under Health & Wellness, Healthy Lifestyle, Spirituality

10 Weeks

So I’ve embarked on this new 10 week program called Creation Health. It talks about your whole health by looking at C R E A T I O N, Choice, Rest, Environment, Activity, Trust, Interpersonal Relationships, Outlook and Nutrition. It is going to be an interesting journey.

One of the beautiful or scary, depending on how you look at it, aspects of Creation Health is the personal evaluation. We take a short quiz to assess where we are at now and then again at the end of the 10 weeks. Why? To see if we’ve managed to learn anything and more importantly – apply it to our lives. Why? Because they want to know they’ve made a difference in offering this program to us.

Think about it for a moment. Isn’t this true for all of life? It can’t just be something we’ve learned, but something we’ve put into practice. What if everything we did had a before and after evaluation so we could see if it was really making a difference or not? Ten weeks on the Parent Teacher Organization, Defensive Driving Class, Fill in the blank Disease Awareness (I can recommend two if you don’t know any: ADEM and Crohn’s Disease). At the end, are we any better off than when we began? Did we take the time to put it into practice instead of merely learning it?

Ten weeks. I’m going to see what happens. God help me put what I’m learning into practice! If you’d like to know more about the program yourself, visit http://www.creationhealth.tv.

 

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You want WHAT?

It’s not just another day or just any moment. Surrender is serious. The peace you are trying to gain demands it be serious. You want an end to the bloodshed. You wan to form new relationships. The war has to end and for that to happen, one side must surrender.

For those who choose to follow God, we also come to a point of surrender. God wants to end the war in our lives – the constant battle to lift up self and selfish desires. The things we think we want leave us with ugly battle scars and we end up wounding those we love as well with our “friendly fire.”

Career, finances, free time, possessions, education. These are all things we aren’t too surprised about being on God’s list of things to be surrendered. It’s not easy, but in the end, there is peace when give God control. Then the amazing happens as we realize it truly was for the best! God really did know what He was doing in choosing this career for me instead of that one!

I fear God has asked the impossible of me, but then He also promises that all things are possible with Him. What does God want? He wants my stressful moments. What? Stressful moments create quite an intensity for me, especially seeing how they affect my Crohn’s Disease. Sometimes I spend days processing a particular stressful moment. That is so not good for me.

So God has asked for me to surrender those stressful moments to Him. I can’t lay claim on them anymore and process them myself. He wants it so He can take care of it. But my personality and sense of justice, organization and scheduling, common courtesy and whatever else says that I have to find a way to make sure this stressful moment never happens again! Nope, God wants to take care of it.

Surrender. God only asks for the thing we fight the most. Surrender. I welcome all prayers as I deal with self and ask for God to give me a heart willing to surrender stressful moments.

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Short Circuit

Like it or not, once you start messing around with all that amazing stuff inside of your skull, you are going to have some consequences. With our daughter, we are glad the lesions in her brain are no longer growing, that it is the one time ADEM episode, but the fact of the matter is there are still after effects of the lesions in her brain.

Greta is one of the many sufferers of a disease or disorder that no one can easily see on the outside. There are many issues, some chronic, some acute, but all leave a person feeling isolated to some extent. They look “normal” to most, but those who know them best know the more of their daily struggles.

Most kids that suffer from brain injuries/lesions, try so hard to hold it together at school. They let it all out at home, full force. Lucky us. At least Greta gets to experience a mostly normal day at school with friends. At home, however, when her will and our wills clash – it can be a nasty battle. The last one left Karl and I on the wounded list for hours. Greta recovered in a matter of minutes – cheerful as ever.

After debriefing over the latest explosion of anger and emotions from our daughter, we discovered something. She has a short circuit. Perseveration – latching on to something and not letting go – is one of her issues. If you try to change Greta’s mind on something she is latched on to – let the battle begin! What we learned is we try to go to step 1 of reasoning out a solution agreeable to all. Greta immediately launches a nuclear strike and takes no prisoners. She no longer has the ability to follow reasonable conflict resolution patterns in areas where she is experiencing perseveration.

Our task now: figure out how to help Greta develop a new circuit so the battle doesn’t start off immediately with a missile crisis – will she or won’t she? On this journey of ADEM effects, we learn more and more about the amazing brain and how our bodies cope. My prayer is that we learn enough to make a difference in Greta’s post ADEM life and the lives of others that suffer due to brain injuries and illnesses.

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Filed under ADEM, Family, Health & Wellness, Parenting

Time Out Gets a Bad Rap

I am here to speak up for that often misunderstood gift of Time Out. Someone in the marketing department should have gotten fired for promoting this solely for disciplinary purposes in school. It’s about time we saw the other side of Time Out. Please bear in mind, this is coming from a woman juggling too many things and about to drop them all. Time Out is the only place you can set them all down and not get in trouble for it.

How Time Out should really be marketed: Are you running at capacity? Are your shoulders no longer broad enough for the burdens you are carrying? Did one more thing just get dumped in your lap? You, yes even you, can leave it all behind during Time Out. This special place leaves all the external stimuli behind so you can just be alone and get your thoughts together once again. Some of the world’s greatest leaders highly recommend Time Out. Read this excerpt from that Nazarene Radical – Jesus, “Come apart and rest awhile.” Call now and we’ll even throw in a special Time Out box, with great pictures inside of remote places of serene beauty to help you get the most out of your Time Out experience.

With truth in advertising – this is the way Time Out should be promoted and right now, this busy pastor’s wife, mother of three and very poor juggler is in line to be one of the first to get my very own Time Out!

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Cheer!!

Being at The Center for Courageous Kids is a life changing experience. Going to a camp designed for kids with medical issues is freeing.
There is so much to write – too much actually. But when the little girl paralyzed from the shoulders down was put on a horse and got to ride, we all cheered for her!
Trained walkers held her back, head and trunk in place as they walked beside her on her horse.
So glad someone had the vision to create a camp for children with special needs!!

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Signature

I will freely admit that my ongoing battle with Crohn’s Disease is wearing on me, but something amazing happened today. I woke up with a song in my mind. “How can I keep from singing Your praise!” A great song by Chris Tomlin.

I settled in for my morning worship time and read part of Psalm 119 an identified with David as he cried out to God to deliver him from the evil that surrounded him. I prayed again that God would be in charge of my battle with Crohn’s and that He would give me peace.

As I often do, I put on some uplifting music while I started on waffles and home made strawberry sauce for breakfast. Karl came out to the kitchen and wondered why I was playing an old CD. Evidently the box that arrived yesterday was the new CD by Steve Green that he ordered for me, but I had mistaken it for something else. He opened it up and got it going in my CD player. One of the songs? “How can I keep from singing Your praise.” It gets even better. The lyrics were meant for me.

I will lift my eyes
In the darkest night
For I know my Savior lives

And I will walk with You
Knowing You’ll see me through
And sing the songs You give

 

This was no coincidence. This was God’s signature on my day, giving me peace in this battle – a peace that only God can give.

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Filed under Crohn's Disease, Music, Spirituality

Even Keel

I’m running out of options and the few remaining aren’t that promising. My primary care physician and I agree on that. He’s great about realizing I’m not your average patient that you can just pump with drugs and so he searches for more natural remedies for me. I’m a bit of a medical freak and I know it.

Today he asked me how my stress levels were. Ha! Yes, it is true that reducing stress in a patient with Crohn’s Disease can be very beneficial to their guts. I’ll admit it – stress goes straight to my gut and I can literally feel it. My husband keeps an eye out for me and has even called me on some stressful situations and said it would be better for me to back out or avoid those situations. I’m so grateful for his support, but sometimes, stress just happens.

I’m a pastor’s wife with three kids, one of which has an autoimmune disease that keeps us going back to specialists every 6 months for MRI’s and other testing. Nope, no stress here. Did I mention that my husband actually pastors two sister churches and that they are each doing a Vacation Bible School this year – different programs of course – and I’m learning parts for both of them? My oldest is working at camp for the summer and I miss him very much, but I hey he is a senior now and it’s time for this mom to get in on all of the senior class fundraising things – don’t wait for school to start. Time is money!!

I suppose that for me, some of those stresses are worth it. I’d be a fool to think I could truly remove all stressors out of my life and remain forever on an even keel. By removing stressors, I’d also be removing amazing parts of my life. This disease has already taken enough from me. I won’t let it take my life.

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In a Mood

It’s never fun to get kicked out of the club. I got kicked out this week.

In order to stay on the study for Crohn’s Disease, I had to have a significant change in my numbers since the last injection of medication. I didn’t get it. Even though there was a 40 point change, it requires a change of 100 points or more to stay in the study. So I’m out of the club.

I was expecting it, because I’d been keeping my pain level journal and I knew the numbers wouldn’t add up right. Being dropped off the study wasn’t nearly as discouraging as the limited amount of options remaining for me in dealing with this beastly disease. So I allowed a mood of discouragement and just plain, “I don’t care” to take over for a couple of days. But I discovered something: it’s not fun to live like that.

I’ve had a couple of days of getting myself back together slowly and now it’s back to the drawing board. God has gotten me through so many bad times of Crohn’s and He will get me through this one as well.

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The Crock Pot

What’s for lunch? Ask Michael, he’s in charge of it today. For these words, I got two looks of surprise! How fun to be a mom of creativity.

Michael was stunned into practically pleading for me to take care of lunch, which I of course did. Afterward, however, I asked him what he was going to do in the future. After all, he had plans for grad school and then work as an engineer – no thoughts of getting married. After a small amount of discussion, Michael revealed his plot to buy family size frozen mac and cheese that has to bake in the oven. He plans to eat on the leftovers for at least a couple of days. Lasagna also appeared on the horizon in this manner. Enough homage to Italy though, so I told him at least he knew how to open a can of beans and season it some so he could make burritos for himself.

That was a definite no. Michael said he would never open a can of beans. He will buy a crock pot and cook my famous beans from scratch. He will not eat canned beans. Wow. Pasta can be frozen, but he’ll buy a crock pot and cook the beans. You know you’ve done something right when a young man destined for life as a bachelor eating frozen dinners says there is one tool he needs in order to cook mom’s famous beans. At least I know what to get him for graduation now.

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Sans Gloves

It has been a long project and it still isn’t “done.” My husband got the garden boxes built for Mother’s Day, but we had to wait until today to get great soil from an heirloom gardening place in town. It is rich, dark and looks like it can grow anything. For people like me, we need all the help we can get.

Everyone in the family has work or gardening gloves except for me. Karl asked me again this afternoon, are you sure you don’t want some gloves? I assured him that I would be fine. I don’t mind getting my fingers dirty. I know how to use a nail brush, soap and running water. I’ve never seen “in the bag at the store” potting soil that looked anything like what we got today. It is so beautiful and it felt wonderful to work that soil with my hands.

The children had helped in various stages of the project. Michael, Matthew and Greta have helped build boxes, seal boxes, water seedlings, pick out starter plants, shovel the special soil and maybe a few other things. But I’m the one that took the plants out of the starter pots and placed them in their new homes, working that rich soil. We’ve all had contact with it and hopefully that will make the taste of the fresh produce that much better. I’m looking forward to tomatoes that have taste and strawberries that smell good, look good and taste good!

I’m praying for God to bless our gardening efforts. We need it. I’ve failed many times before. We keep trying to improve, like getting good soil and using starter plants instead of trying to grow from seeds. I’ve already been blessed, getting a connection with the soil that will provide the environment that will grow plants that will feed my family. What a process. What a gift that God has given us – to be connected to the world He placed us in. Resting in all of God’s goodness and what He had provided was our first duty and gardening was our first job.

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My Gift His Birthday

Before my husband (finally) accepted his call to ministry, his background was in broadcasting. Things like marketing, knowing your audience, catchy phrases and slogans still stick with him at times. One in particular is 43×43.

Karl set a goal of losing 43 pounds by his 43rd birthday, today. He made this goal back in January and the catchy 43×43 became his hashtag on Twitter and a constant reminder of what he was working toward. I’m more than proud and thrilled to say – he met and slightly surpassed his goal! Hallelujah!!

Happy birthday to him, but a gift for me. I’ve been concerned for some time regarding my husband’s health, for a variety of reasons. I’ve spoken with him about my concerns and spent many hours in prayer over it. He’s tried several things, but the 43×43 finally worked! Intermittent fasting, counting calories, God’s guidance and a bigger dose of fresh fruits and veggies were all a part of this success. For me, it is an answer to prayer. I know my husband is healthier and more physically active now and that gives me security.

As a wife and mother, I want my husband around for as long as possible. I have no desires to be a widow with three children. So Karl taking his healthy more seriously and losing the weight – that is truly a gift to me. It says he is committed to doing his part to be around as long as possible for his family. My gift, his birthday. I am blessed and so grateful. Praise the Lord!

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The Numbers Game

It was a disappointing visit at the doctor’s office today. My numbers are up. After receiving trial medication for Crohn’s Disease four weeks ago, my numbers are expected to go down. I did see some improvement, as did my husband. We were both excited about what the next few months would hold and then last week – I hit a major bump in the road.

Pain levels soared up again and the rules are: they count the last 7 complete days of your pain scale diary. The two weeks prior to that were awesome! But the week they scored was my worst week. What it means: if my numbers don’t improve in 4 more weeks, I’m dropped from the study. Even if I’m feeling some improvement and grateful for it, it has to fit in the parameters of the study at the exact time they give. I see why they have the rules they do, but in the end, no one likes to be playing the numbers game.

I could have another great 3 weeks and then the last week before my next appointment could ruin it all. Like many instances in life, one bad episode ruins the whole program. One delicious apple is ruined by finding that half of a worm in one bite. So the progress of Sharon the guinea pig is measure in the final week. It is what it is and it will be what it will be. I will trust God at this point to see me through.

In the meantime, I’m gong to reevaluate areas in my life where I may have inadvertently put others into a forced numbers game. I’ll try to take a look at the whole picture, not just one isolated bump in the road. I think they call that grace.

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Old and New

My husband’s birthday comes in the middle of May – otherwise known as Strawberry season. For years he has loved a special treat for his birthday – strawberry shortcake. Not surprising that our youngest son, born in late November, had a strong affinity for Pumpkin pies, because they were always around in late November.

It has been such a tradition for Karl and for our family, that we don’t want to lose it at all. But when I mentioned trying to find a slightly healthier recipe for shortcake, Karl was actually thrilled! He is so excited about losing more than 30 pounds in less than six months and he doesn’t want to go backwards. This isn’t a diet, for him it is a new lifestyle.

Can there be a mix here? Absolutely! I intend to find a delicious and healthier version of strawberry shortcake and enjoy it with him on his birthday. If anyone has some great recipes – I’m open!!

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Mom’s Beauty

I saw a clip from Dove’s campaign on real beauty sketches. When it became clear that women were being asked to describe their features to a sketch artist – I knew what would happen. For some reason we women like to pick out our worst features and dwell on them as if we are some horrible beastly representations of humanity.

I had a huge gap between my two front teeth. Once in high school a guy told me he could stick a pencil between my two front teeth, so I’m not exaggerating here. But at church one day, I got a letter from a woman who was visiting for a few weeks and only spoke Spanish. She had someone help her write the letter and she basically said she knew we couldn’t talk to each other, but each week she looked forward to my smile. She said I always treated her with a smile and friendliness  even though we couldn’t speak each others’ language. I still had a huge gap between my two front teeth, but this woman saw the real me.

I’ll admit, my own mother has a hard time seeing her inner and outer beauty. Is she a fashion model? No, she doesn’t airbrush herself. Does she wear a business suit? No, she comes in casual clothes, like the ones she wore to clean the private school my kids attended – to help pay their tuition. She has warm welcoming eyes so you know she means it when she says come on in. Her smile can sometimes be mischievous, so you know that she isn’t afraid to have fun. She has an ample bosom to comfort even the most fussy child – she has held the babies of complete strangers who needed a hand and mom quickly volunteered. That’s who she is.

My mom is beautiful!

Enjoy the link below

http://http://realbeautysketches.dove.us/

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Video Tears & Community

I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.

Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.

There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.

What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.

We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.

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What If?

My sweet little one is 10 this weekend. In planning her birthday party, she decided for a large all out bash – where both boys and girls would be welcome. Greta’s love language is fun times with friends. So naturally she would be thrilled to see all of her friends having a great time and everyone smiling like crazy!

One of the adjustments we have had after ADEM is emotional outbursts. Greta gets angrily easy and it takes about half an hour usually for her to settle down, unless we have an awesome, bright & shiny, fun type distraction for her. Her reaction when we try to gently guide/scold/discipline her is as if we were banishing her from the house and family. The psychologist said this isn’t a surprising reaction after all she has been through with the brain lesions.

What broke my heart this week was her sincere question: what if I get angry at my party? She knows she struggles with anger issues, as do a lot of kids and adults suffering with ADEM. She knows it could mess things up and her desire to have fun at her party is so great, but it is almost as if she recognized that this is something that is sometimes beyond her control.

What if? We may not have been through ADEM, but most of us have gone through bad choices or consequences from others close to us and their bad choices. When we are all set to have a good time and enjoy life, we wonder – what if that springs up again and ruins everything? What if these things that I don’t always have control over come back and really get in the way?

I appreciate the way Greta knew that getting angry isn’t who she wants to be and sometimes it just can’t be controlled. Bad choices isn’t who I want to be either. I think I’ll spend some time talking to God about it and asking Him to help me make better choices, so I don’t have to ask – what if. I’m also going to spend some time praying for His blessings on Greta, so she can have a great party and not let ADEM outbursts get in the way.

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The 20 To 1 Grass Roots Revolution

One of the many things I learned during my days in radio is that you will get twenty complaints before you get a single compliment. That’s not a reflection on your work per se, as it is a reflection on society. What it is saying is that people are twenty times more likely to call in with a complaint than they are with a compliment.

Now let’s look at it from the practical side. If what we want the most to encourage us are compliments, but we are 20 times more likely to get complaints instead. As Mark Gungor would say, you have yourself a math problem.

So I’ve decided to be intentional about making a difference. Yesterday I had lunch with my mom and I saw something in the menu that looked great, but I would need to change one thing. Eating out with Crohn’s Disease isn’t always easy. I asked the waitress if it could be done an she said yes. Later on the manager of the restaurant was making his rounds of speaking to the lunch guests. He came to our table and asked how everything was. We could have easily just said a non committal fine and let him go on by, but I chose to take part in the 20 to 1 Grass Roots Revolution. I told the manager about asking for the change on the menu item and that it was done for me and it was delicious and I really appreciated it. It cost me nothing to give that honest compliment.

We all know what it is like to need a bit of encouragement now and then. And with the 20 to 1 odds, we aren’t likely to get it. So let’s start our own odds. Let’s be intentional about giving honest, sincere compliments and words of encouragement! The 20 to 1 Grass Roots Revolution is this: knowing the odds of how people are more likely to give a complaint than a compliment, we purpose to be intentional about giving honest and sincere compliments and words of encouragement. Let the revolution begin!

 

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Does It Make a Difference?

“I am a Christian.” And you’re saying this because? So often that’s the way we look at it. Just saying you are a Christian – does it make a difference? It can, if you are intentional about it.

I’ve struggled with a lot of pain after a colonoscopy and the gastro was at a loss as how to help me. Finally, I went to see my primary care physician and he recommended seeing a massage therapist. It was Monday after 5pm, so I had to wait until the next morning to do anything about it. At my chiropractor’s office, they have a massage therapist – only there on Tuesday mornings. I was her first patient the next morning. So glad she had space for me. I’m still in pain, but at half the severity as it was before. Healing is beginning to take place.

My doctor sits on the same school board as my husband. He asked Karl about how I was doing and Karl was glad to report that massage therapy had made a difference. My doctor was thrilled and shared “the rest of the story.” Massage therapy isn’t something he often recommends. However, as a Christian, he prays that God will guide him in how he handles the care his patients need. He said God put those words in his mouth.

Does being a Christian make a difference? When it is more than lip service. When God is your partner in your life work – yes! I for one, am grateful.

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One in a Million

I’m the one.

Odds are one in a million that you will have an allergic reaction to this medication. I then have to inform the doctor, yes, but I’m the one. I tried to convince a doctor once that I was a medical freak. She would hear nothing of it. She explained that you had to have at least three things going on at the same time. I did and I told her so. She didn’t have much to say after that.

One of my gastro doctors was the first to accept my self-awareness. Oh yeah, you’re the weird one. I proved it true under his care. I was the one in a million that wouldn’t properly metabolize the medication we were trying for my Crohn’s Disease.

It’s not easy being the one. Currently, it rather hurts. Only one in a million will have an adverse outcome from a colonoscopy. Again, I am the one. There are days I wonder what it would be like to be normal. God give me strength.

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Internal Bruising

A hospital emergency room is not where I envision spending a Saturday night with my husband, but alas, I did. My intense abdominal pain demanded it.

We spent a few hours getting lab work (Karl and his hatred of needles politely left the room) and a CT scan. Their results: beautiful. While this was good news (we had reason to fear a perforation of my bowel or an abscess), it didn’t answer the question as to why I was still in pain from a colonoscopy done more than two weeks ago? The joys of living with Crohn’s Disease.

Alas, after much discussion with a lovely and patient ER physician, our best guess is unseen internal bruising from the colonoscopy, due to the doctor performing it having to force it past the area where I was patched together from a surgery in my teenage years. Who knew internal bruising could last so long and hurt so bad?

It is difficult to see internal bruising of the intestines and therefore determine how long it will heal. I suppose it is a lot like other things that aren’t always noticeable from the outside. So perhaps I shall learn a lesson about others and hidden pain that can’t always be seen. Lord help me be more patient and understanding.

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Life Without Limits?

This weekend I was at a retreat for pastoral wives. One look at the schedule and I knew I was in trouble. Two days of awesome seminars and activities in San Antonio, Texas, and me burdened down with fatigue and pain from Crohn’s Disease. The bus was going to load up at 2:00 Saturday afternoon and not coming back until 10:00 that night. How would I manage all of the activities?

I discovered that in order to experience life without limits, I had to limit myself. Yes, chew on that one for a while.

Presently, my fatigue is somewhat manageable if I can get a 30-45 minute nap (yes, I love even longer ones) in the morning. If I get in one morning nap and pace myself the rest of the day, I do okay. But there were seminars scheduled all morning and activities all afternoon. So I limited myself.

I cut out one morning seminar and took my required nap. On the tour bus, I commandeered the back seat and brought my pillow and blanket with me. Yes, I missed some great conversations on the bus and a great morning seminar, but I experienced life without limits in exploring a cavern, The Alamo and downtown San Antonio, an incredible vegetarian restaurant and the San Antonio Riverwalk.

I still attended other seminars, I just skipped one of the morning lectures. I still did the tours, I just slept on the bus between destinations. By limiting myself, I experienced life without limits that I thought would have otherwise been impossible.

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Epi What?

Think choices and lifestyles are unimportant? Think again. Especially, think about the choices your grandparents made. The science of epigenetics is fascinating. The YouTube link below explains it best.

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HALT!

I love this acronym. HALT is not so much about making decisions, but your surroundings when you make them. Here is the advice: Don’t make important decisions when you are Hungry, Angry, Lonely or Tired (HALT).

What should I eat? Not a good decision when you are already hungry as impulse will most certainly take over. I know for a fact that fatigue gets me and I don’t have full use of my thought processes, so not making important decisions when I’m tired is a no brainer. I can see the wisdom in checking yourself and decisions made when you are angry or lonely.

Take a moment to make sure you are making good decisions, at a good time. Remember to HALT!

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Choice

There is a program called Creation Health. I like their approach to the various aspects of health when the C in Creation Health stands for Choice. That’s right – choice is a part of your health.

I have a relative by marriage that just had surgery to remove a diseased eye. This eye became diseased due to several factors, including smoking. After the surgery, I’m sad to say, this relative is still choosing to smoke. But it is their choice.

Do our choices have an impact on others? Absolutely! What choices are you making?

 

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My issue is not your responsibility

Crohn’s Disease + cold = painful intestinal cramps. Needless to say, I don’t like cold air blowing directly on me. Today I spent an hour and a half in a facility that had problems with its heater. It was blowing out cold air. My jacket wasn’t enough and soon I had intestines in knots. It wasn’t fun.

Bad facility. They shouldn’t do that to people, right? In a sense yes, but in actuality – no. I am responsible for my special needs. Think about it for a minute. If we asked any and all business and facilities to make accommodations for every single special need out there – no one could stay in business. Does this facility need to get their heater fixed? That would be a huge yes!

But the greater burden lands on me. If I know that I get cold easily and it can lead to excruciating pain, I need to make sure I have a travel blanket with me. If I know that I get cold easily and do nothing about it – why should I start a crisis because I’m not warm enough?

Please don’t get me wrong. I’m not saying stop helping people. By all means, let us be compassionate and helpful to all we come in contact with. I’m all for compassion and going the extra mile. But it doesn’t change the fact that we are responsible for our own special needs. I have a diabetic friend that wishes his church would provide sugar free drink at their potluck meals in addition to the lemonade and fruit punch they serve. It would be nice if they did and they should try to do that, but in the end, he knows he has special needs and comes prepared.

So, I’m going to make sure I travel with a jacket and a blanket now, to cover those very sensitive intestines. It’s my responsibility.

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Say Ahhh

Yesterday I was sitting in a doctor’s office signing my life away, again. I had started an experimental study for Crohn’s Disease, but I had to be taken off due to an infection. So yesterday we went through the process again and I had to sign papers all over again.

The specialist I see has to ask questions about where I am at and how I feel. Obviously if I’m feeling great and have no symptoms, they want someone else for the study. She asked about mouth ulcers, known to happen in Crohn’s patients and very common to me. I admitted I had a few recently. Then came the exam.

She listened with her stethoscope, examined my eyes and finally looked inside my mouth. “Oh, I can see where you had one on your tongue and it is healing.” After the exam was over and we were on our way to get some healthy lunch, by the way Jason’s Deli offers a variety of  healthy options, Karl apologized, even though it wasn’t his fault.

“I didn’t know you were struggling with mouth ulcers. I’m sorry I keep trying to kiss you right now.” What was wrong with my voice? Why didn’t I just admit that I was in pain in my mouth and just didn’t care to be kissed right then? It wasn’t his fault, it was mine for not speaking up. Even though we’ve been married for more than 20 years, sometimes I still don’t want to admit when the Crohn’s Disease has done one of its things to me and I just don’t want to be kissed right now. It’s a part of my life. I need to quit pretending that it doesn’t happen and just be open and honest with the one man who won’t laugh or shame me for what I’m going through. Lesson learned, I hope.

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The Four Friends

Greta had her one year follow up regarding her ADEM. It seems we learn more about this disease each time we see her specialists – actually we learn more about how it is affecting Greta. Her MRI looked great, no new lesions and shrinkage of most of the original ones. There is one spot on her brain that isn’t going away. The doctors said that since it is one year out now, most likely she will have that spot for the rest of her life. This will make things interesting for her. If she ever has an MRI of the brain in the future for any reason besides the ADEM, she’ll have to let them know ahead of time that she has a spot on her brain, from a childhood illness.

We learned that there are four friends that hang out together after brain injury/trauma/lesions. They are perseveration, decreased math skills, memory oddities and being very literal. And yes, Greta is textbook with these issues. She latches on to things and won’t let go, like a honey badger. She’s been taken down a grade level in math and we never know when her memory is going to take a brief hiatus. What about being literal? Don’t even think about using a figure of speech unless you are prepared to spend 10 minutes explaining it to Greta.

The literal issue is probably one of the biggest. Most everyone has run across someone who has no concept of boundaries or sharing/taking turns. So the latching on to things of perseveration won’t hinder her throughout life. Many people hate math. Greta will have many sympathizers. Who knows what is memory and what is not? Half of our lives are spent connected to some sort of electronic device to prompt us of important things anyway. But being very literal – it could lead to all kinds of trouble.

I remember saying something like, “It’s got your name written all over it Greta.” She did indeed look for her name and then got very angry that I had lied to her because obviously her name wasn’t on it. She had no concept of the figure of speech. This is one of many incidents she has gone through. So I will start praying now that there will always be at least one person in the group (Greta loves being with friends) that will help her get past this literal hurdle. For now, it is her family. I pray she finds friends to help her overcome these setbacks in college and eventually the workplace.

Perhaps this is why the Bible tells us to confess our faults to one another. It doesn’t say sins. It says faults. If we open up and share with each other our struggles, the hope is that your friends will pick up the slack where you need it most. But this requires vulnerability. This requires risk. What if I share my struggle with someone and they just laugh at me? What if they use it against me and keep me from getting that promotion I was set for? We can start by being a good example. You probably already know an issue that one of your friends struggles with. Go out of your way to be a true friend and pick up some slack. Be intentional about helping your friends and family. It matters.

Suppose Gr

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Acceptance

Greta's ADEM

Greta’s ADEM

One of the hardest hurdles to cross on our journey through Greta’s ADEM experience is acceptance. I’ve learned how to say and spell Acute Disseminated Encephalomyelits, but learning to accept all it has done to our sweet girl is another matter.

Standardized test scores this year show an average of a 20 point drop from her scores the year before. I thought the doctors were originally a bit crazy or paranoid for wanting to monitor Greta for 5 years after the initial diagnosis. Now I understand why. The brain lesions are shrinking, each MRI is confirming that. No more are forming, for which we are ever grateful! But the fact of the matter is that damage was done.

So now we find ourselves moving past the urgent of getting back Greta’s eyesight in her left eye, to helping her cope with new realities. It isn’t easy. She is fairly resilient. I’m afraid it is her parents that are struggling with how to accept that things will never be exactly as they were before. It is going to require dedication and purpose on our parts to go through this with her, keep track of crazy things and report them to the doctors and keep up on forums with other parents and see how we can encourage each other.

Denying that there hasn’t been any change in Greta’s academics would be wrong. But giving up on her and not pushing her to make an effort would be equally wrong. Acceptance doesn’t mean settling for mediocre. Acceptance means finding the outstanding and excellence where you are!

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You can have those crumbs

My husband has accepted the accountability of the family in helping him to reach his weight loss goals. The end of 2011 and most of 2012 was quite crazy for us. Greta being hospitalized for ADEM, my Crohn’s Diagnosis and subsequent torture via modern medicine were bad enough. Add to that Karl’s desire to understand and be sympathetic regarding all of the surgeries I’ve had, so he decided to have his appendix removed. Yes, 2013 is the year to put the medical nightmares behind us and get our health back!

Karl’s goal is simple. Lose 43 pounds by his 43rd birthday. 43 by 43 is his slogan. Matthew, our  middle child, has risen to the challenge of being his father’s diet drill sergeant. He takes his job seriously. He asked Matthew how many of the Danish butter cookies he could have. Matthew’s response – NONE! Karl’s reply – None???!!!! Matthew then proceeded to examine the tin of cookies again and give in. “You can have those crumbs.”

We all busted up laughing, and Karl ate no cookies and no crumbs. Karl also got to notate the weight loss from yesterday on his chart this morning. Way to go Matthew! Do you want to do something? Are you serious about it? Go for it like you mean it. Don’t even take the crumbs!

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Safe Accountability

I am all for accountability! It really works. My husband is back on his weight loss goals and we have the chart out again. He loves to hear the excitement of the kids each day when he lowers the number on the board. Hooray for daddy! The encouragement keeps him going.

As a woman, I can tell you right now that I have no intention of putting my weight on the chart each day. Karl has invited me to join him in his motivation tool, but I know my kids. They tell everything! What could I do?

Finally God revealed the perfect idea to me. Getting Down with Me Money!

I made a chart for the days of the week and a simple motivation tool. Each day that I put a down arrow on the chart (meaning my weight went down, however great or small the amount), that equals one Me Dollar – money I can spend on myself. I have the accountability of the public chart and the encouragement of the kids, but not the constant fear that one of them will reveal my weight at school to their friends. I also have a great motivator tool. You see, I always feel guilty about spending money on myself. You know; there are bills to pay, donations to give and always something more important than splurging on a little thing for yourself. My family will encourage me to use those Me Dollars and to keep getting down arrows on my chart.

I put my first down arrow on the chart today. Here is to many more down arrows and safe accountability.

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Coming Full Circle

Today, I’ll sit at a table at a health fair – creating awareness for Crohn’s Disease and other Irritable Bowel issues. Months ago, I searched online and found a Crohn’s patient advocacy program. I signed up. I got an advocate. She and I have talked and emailed numerous times. Today, she will be at the health fair with me and I get to meet her in person.

The patient advocacy program changed my life in many ways, giving me support and encouragement and pointing me in new directions when I needed it. It has been a long journey, but I’m grateful today to have this experience and hopefully give back.

Today, I hope to promote understanding. Crohn’s is not understood well and often stereotyped incorrectly. No, not everyone is pencil thin. No, not everyone has to run to the bathroom endlessly. It is such a broad disease that manifests itself in a variety of ways. Two patients, same gender, age, socio-economic background and whatever else you can imagine can both have Crohn’s and manifest it differently. Much of the pain and inconvenience isn’t in the open. Many suffer in silence.

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Health Expo

Please click on the hypertext below to see a picture of our Health Expo!

My first time sitting at a “Crohn’s Disease” table. This will be interesting.

Flier

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Who

I want to know who invited Murphy when it was time to make laws. I don’t like Murphy’s law.

A fabulous family friendly New Year’s Eve celebration, including sparklers, s’mores, bonfires and fireworks was amazing.

Murphy said after that I had to have one of my worst ever Crohn’s disease attacks today. Not how I wanted to start 2013.

Please stop inviting Murphy to the table.

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New Words

I studied French in high school and college. I love foreign languages! My oldest is studying Spanish. It was so much fun to amaze him at translating some words, just because of their similarity to French words. Studying even just one foreign language can open up all kinds of opportunities!

I hate the new language I’m learning – Crohn’s Disease. Today’s new word – arthritides. I hate these little chemicals that Crohn’s releases into my body. I’m not enjoying this at all. Writing (the old fashioned pen and paper kind) is painful and at some point I am sure even typing will become more trouble than it is worth.

The more I study this new language, the more I learn that Crohn’s is really a vast network of disease and symptoms. It is much bigger than most of us realize. I’m learning to recognize that every new thing isn’t exactly new, just a different manifestation of the disease. Bummer.

It does make me think about other connections though. What new “symptoms” in relationships am I frustrated about, when really they are just new manifestations of a problem that has been there for some time. Maybe that adage about nipping something in the bud is some of the best advice ever! If you are dealing with a new struggle right now, take the time to see if perhaps it is just a new manifestation of something you haven’t taken care of yet. That doesn’t mean it will be easy to do. The longer you leave something to fester, the more effort it will take when you finally decide to take care of it. But in the end, it will be worth it. Now if I can just figure out how to defeat arthritides.

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Dear Diary

“It’s the biggest thing happening in East Texas right now.” This is, of course, from the health care perspective. So now I find myself in the midst of the most happening thing in my neck of the woods – a double blind study about whether or not a particular medication is helpful to Crohn’s patients. There are three things that could happen. I could get a generic dose of the medication. I could get a dose that is measured for my age, height and weight. I can also end up with the placebo. I feel like I’m in one of those “you choose the ending” books that I used to read in junior high.

Blood work, EKG, lots of questions, lists of medications and on and on I went through the screening process yesterday. Am I a good candidate for this study? That is still to be determined. In the meantime, I have a diary. I’ve never been good at diaries. This blog is the closest I’ve ever come to writing something down about life on a regular basis. But now, I have to record each day the meds I’ve taken and my pain level and a few other things that Crohn’s patients will know about but I won’t mention here.

My assumption? Once I’m sure to be in the study, I start the diary. Boy was I wrong. I’m supposed to start it right now! These people need to know how bad my pain level is and everything else to even see if I would notice a change due to a new medication. They have to see a record of several weeks of how bad it is, so they will know if I’m actually improving or not once the medication (or placebo) starts.

I’ve always seen myself as a strong person, able to overcome. Keeping track of my pain isn’t going to be easy. I’ll have to admit just how much this disease has beaten me up the last couple of years.

I’m going to have to be broken, vulnerable. Evidently, that is when healing can begin.

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Ain’t So Bad

I am not, I repeat not, a Rocky fan. However, today, it best sums up my mantra. I look pretty roughed up after several rounds with Crohn’s Disease the past couple of weeks, so all I can do is stay in the ring and shout back: Ain’t so bad! It’s better than crying.

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Carried

Kind of funny, but I said I was going to work on getting through my anger at the doctors/surgeons of 25 years ago. Perhaps I should have stated it more realistically, I’m going to pray that God gives me victory over this struggle with all that has happened in the past and how it could have been different.

As my husband was reviewing a video clip he was going to use in his sermon yesterday, God revealed to me what had happened over the last 25 years. The video clip is about Team Hoyt. A father and his disabled (cerebral palsy) son who are triathletes. The father swims, pulling the son in a boat. He bikes, pushing his son in a special wheel chair attached to the front of the bike. He runs, pushing his son in a special wheel chair designed for running. Dick Hoyt (father) says Rick (son) is the winner, with all of the spirit. He just loans him his arms and legs.

Dick and his wife didn’t ask for a child with cerebral palsy, but that’s what they got. I didn’t ask for Crohn’s Disease, and I didn’t ask for doctors to fail me and not follow through. But just as I watched that video, seeing this retired military man sweat and fatigue through intense athleticism and then watching his son’s exuberant face as they reach the finish line, I realized what God had done for me. Those 25 years, God pulled me in a boat. He pushed me on the bicycle and he pushed me in the racing wheelchair. He knew I was at a disadvantage, so He carried me.

There are going to be more bumps in the road, so I’m going to trust that God again will carry me. He is able.

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