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.
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.
It is a strange sensation, watching my oldest child go through things that seem like only yesterday for me – college applications! He took his PSAT and evidently got attention from several colleges and universities. Two letters arrived today and it’s been about that rate for the past couple of weeks.
Michael was quick to notice the formula. Most of the letters talk about a website to help you understand financial aid for college and they give you a username and password. I suppose each college hopes you will use the one they gave you. Michael looks at these as routine. The Colorado School of Mines was different. Their interest letter stood out. They went beyond the pleasantries of why Michael would love his experience at their facility and went on to describe what some of their recent graduates were making as engineers their first year out of college. That got Michael’s attention.
He already has some ideas and aspirations, he wouldn’t at all mind getting a letter from MIT, but Michael pretty much throws all of the form letters away. The letters that take the time to note his interest in engineering and so forth really stand out. It will be interesting to watch him go through this phase of his life, even though I will loudly protest the entire time that I am far too young to have a child preparing for college in another year.
This whole process has taught me something – that I need to stand out. If I want to get someone’s attention, I need to be specific and purposeful in standing out differently from all of the rest. This will require digging a little deeper and taking the time to get to know common ground before I send off some form letter. Thank you Colorado School of Mines for a lesson all of us need to learn at times.
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.
As I saw it unfold before me I could only shake my head and say, “Cramming.” If it wasn’t so frustrating it would be funny. We don’t always methodically prepare and study for something until we have a greater sense of urgency, leading to desperate and intense periods of exhaustive study of material – otherwise known as cramming. Alas, each generation has to learn it for themselves.
Matthew and his fellow pathfinders did a trial run yesterday, preparing for this coming weekend’s “Pathfinder Bible Experience.” They have been given selected passages from the Bible that the questions will be taken from. Their wise leader divided the passages up among the pathfinders so they would only have to concentrate on certain parts and be well prepared to answer questions from those passages. The pathfinders, having these assignments for months, demonstrated quite well that they prefer the cramming method of preparation.
Karl had a talk with Matthew this morning about how his knowledge of the assigned passages has increased as the sense of urgency has increased. I believe for many of us, that’s half of the battle – understanding the sense of urgency months out, so we don’t end up cramming at the end. I battle with this myself. I’m a lot more concerned about keeping my boss’ insurance in compliance as the deadline for renewal draws closer. I’m a lot more focused on my presentations to the women’s groups as the day of the seminar gets closer.
As always, God comes in and turns everything upside down. He doesn’t require any cramming. We don’t have to be perfect, well versed or in compliance before we come to Him. We just have to come. It is so simple, yet many still put this life changing decision off, because they feel no sense of urgency. They plan to live their life and then make things right with God just before they die of a nice old age. You don’t have to be perfect, just come. After all, you don’t know when your last day is. No cramming, just come.
Through the marriage seminars my husband and I present, I’ve learned a lot about personality types and the differences between men and women and the way they think, act and react. From the study of my Bible, I see that God knows our personalities and puts them to the best use if we are willing to surrender (of course He knows us because He created us). However, God is clearly not limited by our personalities. The good news is that we don’t have to be limited by our personalities either. Yes, it is good to know our basic starting point on how we perceive and relate to life on a daily basis, but because of the grace of God, we are not limited to only that.
Why is this important? There is one very strong personality combination – which Mark Gungor, of Laugh Your Way to a Better Marriage, refers to as the world’s strongest willed people. Is there a place for the world’s strongest willed people? Yes. Are these people often misunderstood. Again, yes. So what’s the big deal? Confession.
You see, some of the strongest willed people refuse to say they are sorry or admit wrong. That’s just not in their mojo. You’ll find Sasquatch in Atlantis before you get one of these folks to admit they were wrong and apologize. The burning question of the day – if I can’t apologize to a fellow human being that I have wronged, how can I confess/apologize to God?
Well Sharon, I have nothing to worry about, because that’s not my personality type. Great! So you practice confession on a regular basis then, right? Perhaps all of us are in need of a little more grace, not just the strong personality types, to soften our hearts and cause us to be willing to admit wrong and apologize. Why is confession so important? Because a contrite/broken/confessed heart God will not despise. He has promised that if we confess our sins, He is faithful and just. He will forgive and cleanse.
You know that chafing you feel because you know you wronged a family member, but you don’t want to admit it and eat humble pie? God can cleanse away that chafing feeling. Confess, because He is faithful and just. He will forgive and cleanse.
Breakfast is the most important meal of the day. Truly it is. Do some research and you’ll find some amazing things. First of all, breakfast is a free meal. Huh? If you are eating a decently nutritious breakfast – tank up! Healthy calories consumed at the morning meal are normally burned off during the course of the day. Just watch yourself for lunch and supper. Logically, if you eat 800 calories at 6:30 in the evening, most likely you won’t have time to burn off enough of those calories to justify what you ate. It’s really a no brainer.
The meal is pretty important at our house and I’m proud to say my kids get a home prepared breakfast before they go to school. I hear the stories of other kids that come to school hungry and they feel so sorry for those kids. I want to get in the faces of their parents and ask them if they are crazy! It is sad when the school has to send notes home to please make sure your kids get a good breakfast so they can do their best on the standardized testing coming up.
But a home prepared meal comes at a price. Mom had to get up earlier and sometimes dad too. The children need to have their lunches finished and out of the way so mom can get going on making that most important meal of the day. This morning, all three of my kids overslept, but I didn’t. Eventually I grabbed the air horn we use as a last resort to remind them that yes, it is another day and school cannot be avoided. I informed my husband that the children would be in the way and I would have to make a simpler breakfast, not the mouth watering breakfast burritos he had been hoping for.
Karl doesn’t move fast unless he has to. It is not in his nature. He is the peaceful, easy going, relational person that spend a lot of time thinking through how decisions and reactions will affect various relationships. He sees the big picture and takes time along the way to make sure all will be well at the end of the day. This takes time. But breakfast burritos are his favorite. He jumped out of bed and began rallying the troops. Get your lunches made and out of mommy’s way if you want breakfast burritos!
Needless to say, we had breakfast burritos this morning. Did it require extra effort and inconvenience since we were already behind schedule a bit? Of course! But the whole family felt it was worth the effort. Now my challenge is how to bottle that intentionality and purpose and speed for other things in life. How can I show my children that there are many things in life worth pulling out all the stops for – not just breakfast burritos? I am determined to find an answer.
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!
So I started this blog for the purpose of encouraging myself and others to be intentional about relating to life. I hope (with the occasional artistic license) that is what you have seen here.
Sometimes, however, we need things spelled out for us in a very practical manner. So exactly how does one become intentional about relating to life? Let’s look at the three main words: intentional, relating and life. If we look at it backwards and describe it, we might describe life as active moving essence. We could describe relating as understanding how something applies to us or seeing our connection to something. Intentional of course meaning purposefully, meaning to, choosing to do it without hesitation.
So, how has it been for you lately? Have you been seeing your connection to active moving essence and choosing to do so without hesitation? Have you been understanding your marriage more, purposefully? Have you been relating to your kids more – meaning to do so? Don’t leave anything out. To get the most out of life, we need to be intentional about every aspect. Don’t hold anything back. Live life fully, purposefully and without hesitation!
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!
My husband was sharing some of his recent conversations with some church members, telling how prayers have been answered in some areas. He told me how he spoke very bluntly (I would say rudely) to one person and I responded, “You said that to him?” My husband of course replied, “Yes.”
I was beginning to think my pastor husband had lost his “bedside manners,” with some of his parishioners, but he continued. “He likes it when I talk in his face, because that’s the way he is. If I didn’t, he wouldn’t appreciate anything I say. It is how he communicates.”
I ran this bit of explanation through all I knew about the various church members and realized, he was right. He had taken the time to know the person and know how to best communicate with them and after praying about pastoral counsel, went for it!
It was a good lesson for me. When I really need to communicate something important to someone, do I study them and know how best to present it? Have I learned how they would be most receptive to my words? Do I take enough time to show I care about who they are to converse with them in a way that makes them feel comfortable?
Do you have an important conversation you need to have with someone? Take the time to intentionally study them and learn how you can make that conversation something they want to be a part of.
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.
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.
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.
Presenting marriage seminars is amazing. What a blessing! To see and hear of lives impacted and knowing these couples will never be the same, wow! What a privilege.
We managed to include a marriage seminar during our stay with family for the holidays – not for the faint of heart. At each seminar, we give away some t-shirts that help the couples remember some basic nuts and bolts things of understanding each other. Believe it or not, we need to be reminded at times that men and women are different in how we think and act. We play a game to see which guy gets the t-shirt.
We ask elimination questions until there is only one guy left standing. One of the questions was: did you go to the store for your wife this week? I noticed the man in the wheelchair, but I didn’t think about the question we just asked until his wife blurted out, “He can’t!”
Karl and I looked down the list of remaining questions and realized a lot of them would exclude someone with limited abilities in a wheelchair. We skipped a lot of questions and tried to be inclusive as much as possible. What if that woman hadn’t spoken up? I’m determined to take the time to notice obvious disabilities (not all can be seen) in the future and alter the game we were given to include everyone.
What if that devoted wife hadn’t spoken up? What if you and I don’t speak up? Find your voice and look around for those who may have lost theirs.
We did one of our “Laugh Your Way to a Better Marriage” seminars this weekend. Love seeing couples laugh and nod their heads – oh yes that’s right- as they listen to the practical marriage building truths packaged in humor and common sense.
One man took it to a new level. He laughed and stomped a foot. He loved it! If you’re happy & you know it stomp your feet!!
Take time to openly express joy and laughter. It feels great!!!
I’ve received a great honor recently – most favored auntie status by my 2 year old niece. I’m not sure what I did, but Kayleigh has selected me to be her cuddling aunt. She told her mother she wanted to sit in my lap for family time. I was surprised, but nonetheless delighted as all of my children are past this stage.
The entire family, all 15 of us gathered for the holidays, have managed to carve out time each day for family worship. Kayleigh selects me to sit with during this special time. Again, I am delighted.
Then there was the day she gave the universal sign. She had her precious blankie in front of her and slowly backed up closer and closer to me. I knew what this meant, I was supposed to pick her up and set her on my lap for cuddle time, which I did. It reminded me of the times my own children had a special book, toy or blanket, held closely in front of them before they began backing up to be picked up and set on the lap.
All kids seem to be born with this skill. It is truly a phenomenon of the development of children that they universally use this little tactic – for very special time. You can read to kids. Then there is the time they back up into your lap with their favorite book. That is special time.
I think this is something I would like to put on my “when I get to heaven” list. I will pick a favorite thing, back up toward my Father and let Him set me on His lap for very special time.
My in-laws have 5 acres. Karl has been leading the charge in digging in to help with yard work. Our boys & their 2 cousins got in on it too.
At one point, one of my nephews asked his father when they could have a break. He pointed to my father-in-law and said
See that 71 year old man over there? When he stops you can stop.
I think the boys got a new appreciation for hard work and their Opa.
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.