Category Archives: Crohn’s Disease

Crohn’s Disease is being diagnosed more and more each passing year. So much isn’t known about it, even in the medical community, and many suffer in silence. I hope to bring awareness about this disease and encourage those who have it (or anyone who can relate to having “an issue” in their life) that there is always hope and a reason to keep looking up!

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

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

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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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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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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Filed under Crohn's Disease, Spirituality

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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Filed under Crohn's Disease, Health & Wellness

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 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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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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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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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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Filed under Crohn's Disease, Spirituality

Release

What were you thinking? To any physicians and surgeons out there, I’m sorry, but please don’t take this personal. If I could go back 25+ years I would yell, scream, throw things around or do anything else I could to get the attention of those people, grab them by the ear if I had to. “What were you thinking?” What kind of a doctor takes 18 inches of colon out of a 14 year old girl then just leaves her to fend for herself? Did you not even think to check for Crohn’s Disease, Colitis or anything? Is it just a favorite past time of yours to yank out parts of a person’s body, leaving a lovely exploratory scar as a parting gift?

I’m working through the grief. After living with gastro issues for more than 25 years, I’m dealing with learning it was Crohn’s Disease all along and I’m grieving what could have been. If the doctors and surgeons had followed through, my life would be completely different. Then again, maybe they did me a favor. What did I accomplish (college degree, three kids, Who’s Who award, program director for a television network, published poet) that I might not have – had I seen myself with limitations? I had my whole life in front of me. You took out 18 inches of my colon and left me with no diagnosis, just to figure it out on my own. Was I better off that way?

Even if I could find those doctors and surgeons and was able to give them a piece of my mind, it wouldn’t give me peace of mind. In reality, there is nothing that can be done now to change anything. “I’m sorry, we didn’t know that much about bowel diseases at the time,” doesn’t work for me. They diagnosed my sister. Was I a bad girl that I didn’t deserve a fair shot at knowing what I would be struggling against the rest of my life?

I’m coming up on one year of getting my diagnosis of Crohn’s Disease. I’ve had to learn a lot the past year. I’ve been through a lot with medications, lab tests (some cost $400 a shot), weekly blood draws to ensure proper medication dosage and learning about things to do and not do for Crohn’s Disease (sure would have been helpful 25 years ago). I’m grieving a part of my life that could have been lived differently, had I known. This week, I’m working on accepting what has happened, because obviously there is nothing that can change it, forgiving the people who failed me all of those years ago and moving on from where I am at now.

This is a journey of acceptance, forgiveness and release. God give me strength and thank You for walking with me.

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40 Degrees

Why in the world would I sit in a camp chair in 40 degree weather this weekend? Because my oldest son was playing in a flag football tournament.

He’s not the most athletic child out there, more of a brainiac, but he gave it is best shot. The program has been good for him this year and so yes, I will sit out in 40 degree weather to watch him play just a little bit of a few games in a tournament (he was assigned to special teams).

Crohn’s Disease tried to get me down later that day, so after sleeping for nearly three hours, I got up and went to a school fundraiser for my younger two children. Why do we do this? Because we love our kids. Why do I do it? Because I care and because you can.

I care about my kids and so I support them. I also want to show them that some things are worth fighting for. I want them to know that some things are worth taking risks for. Shivering in 40 degree weather with 10 mile an hour plus winds isn’t the smartest thing to do for Crohn’s Disease, but it was the best thing I could do as a parent. I hope they see that you may have to adjust things and schedule your day differently, but you can. Yes, you can!

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Filed under Crohn's Disease, Family, Parenting

I Am Not Alone

So our daughter decides that having a rare in children autoimmune disorder isn’t enough and has to test positive for three food allergies: wheat, egg whites and peanuts. Although some experts say there is a high incidence of false positives in these tests, we are still taking precautions and carefully preparing her food. Peanuts is the easiest one. It is a common allergen and there are already many products proudly boasting they are safe for kids with peanut allergies. Bring on the Almond butter!

The wheat is giving us the most grief. We found a load of bread that was gluten free, but it had egg whites in it. It is a huge chore! Yesterday for lunch, I made grilled cheese sandwiches and potato carrot soup. Greta noticed that her bread looked different from all the other plates of sandwiches. She started to complain and felt all alone. “I don’t like feeling that I’m all alone.” I quickly reassured her that she wasn’t alone. Everyone else in the family can eat cheese, but I can’t. I have Crohn’s Disease and a colon resection to thank for that. As soon as she was reminded that she wasn’t the only one, everything changed.

Who likes to stick out for the wrong reasons? Who likes to be the one that everyone “feels sorry for” because they are so different? But the truth is that most of us have a special need here or there. Some are just more obvious than others. One of the recent trends that I’m learning to follow is bringing awareness to those who suffer in silence. There are many illnesses, diseases, home situations, and so forth that it isn’t always evident just from the outward appearance that a struggle is even taking place.

Because it has to do with that part of the body that a lot of people don’t want to discuss, Crohn’s Disease and similar issues weren’t talked about much. But the truth is: everybody poops! I’m seeing more and more people that are talking about their issues in a productive way. This is a good thing. Why? Until I joined http://www.chronology.com, I didn’t realize there were others out there that experienced pseudo fevers like I did. I didn’t realize there were others out there who went misdiagnosed for years as I had. I found a place that showed me I wasn’t alone.

Most people want that. Even the solitary types want to know there are other solitary types out there, even if they don’t want to meet them. It’s just good to know you aren’t alone. Once parents of children with allergies started banding together, we got more options to offer these kids. When we suffer in silence, nothing gets accomplished to help make a difference. When we take the time to get to know one another and share what is really going on: we will find we are not alone and working together we can effect change. Examples? Now that we know peanuts are a common allergen, there are some elementary schools that have banned peanuts and peanut containing products. There are so many other options out there and people can eat all the peanuts they want at home. The Center for Courageous Kids holds a summer camp each year for children with severe allergies and their families. In fact, that’s all they do, hold summer and family camps for kids with different issues, including asthma, multiple sclerosis and transverse myelitis.

Kids that have been through so much see they aren’t alone. Maybe you need to see you aren’t alone as well. Do a google search and see if there is anyone else out there “like you” and see what you can learn. You just might be part of a miracle of making a difference!

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Filed under Community, Crohn's Disease

A New Pair of Glasses

I feel like one of those detectives assigned to the cold case room. These unresolved cases sit for 25 years or more and now a new team of detectives goes back and takes a second look, utilizing the technology and modern crime solving techniques that weren’t available when the case went cold. I am a cold case detective and the incidents I’m trying to resolve are my own. Twenty-five years ago, they didn’t make any sense, but with modern technology and a new pair of glasses, I’m back on the case!

I’m not alone in my detective work. I’ve got a great team. My husband is the IT man of the team. Not only does he keep all the technology working smoothly, he also willingly buries himself into critical research. The team would be nothing without him. I am the main witness, trying to solve my own case and it was one of my doctors that was responsible for giving me the “new set of glasses.” With my diagnosis of Crohn’s Disease, I now had a new reference point for examining all of the data and evidence.

The first mystery dates back to 1982, where the case might have turned out differently, had modern testing and medical knowledge been available at the time. The crime scene – your every day small town hospital operating room. The innocent bystanders were the doctors and nurses who performed the routine appendectomy on me, only to find it wasn’t necessary. They followed the clues the best they could, but the trail went mysteriously cold. They faced a difficult challenge though, once in and bothered, the appendix can become a problem, so it was removed.

My case was once confused with mountain sickness. The evil professor of pain came back to torture me while I was in Leadville, Colorado for an international youth campout. For those of you who don’t know, Leadville sits higher than Denver. It was easy for the detectives at the time to attribute my case to this little Oklahoma girl being out of her element and succumbing to mountain sickness. It was an open and shut case, so they thought, back in the summer of 1985. Only when reviewing the evidence with the new pair of glasses do I see the correlation between the two.

Back in those Oklahoma hills where I belonged, the evil professor of pain pulled out all of his stops. It was a good thing we were far from Leadville, the good detectives there might be embarrassed to see how they had missed this case. My new detectives made a courageous decision – we won’t know unless we take risks and stake out the territory. My mother signed the papers giving them permission to do their surveillance. After a long incision, removal of 18 inches of colon for evidence and weeks of recovery from the stake out, the case was considered closed. They found the damaged colon and removed it. No further investigation was necessary.

It was a severe blow to the evil professor of pain, so he laid low for some time. He must have had a great underground network. He would make appearances from time to time, just so I wouldn’t forget about him and get too complacent. But for more than 20 years, he left me mostly alone. This is when the big mistake happened. Another criminal came on the scene and he was easily vanquished and sent packing with a straight shot of NSAID‘s. Little did we know that the evil professor of pain grew stronger and bolder when NSAID’s were in use. All too soon he made a comeback.

With my new set of glasses, I now can easily spot the trail of the evil professor of pain and try to beat him at his own game. All these mysteries of the past and many more make sense when I see how they were all linked together. Now the case is wide open. We know we have the suspect and we are working on apprehending him before he can cause any more damage. The case is also being shared with other detectives. Perhaps they too have had a cold case that looks similar to mine. By sharing my detective story, I hope to help other detectives in their efforts to stop the dastardly deeds of the evil professor of pain.

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It’s All in the Name

I once had a coworker who admitted she named both of her children after characters from television shows. I can only imagine the conversations she must have had with them. Mom, what was your inspiration for choosing my name? Oh I loved spending time watching this one tv show and I wanted it to live forever in my mind, so I gave you the name of one of its characters. Um, thanks mom.

I would meet other people in my life’s journeys that would recall similar stories. Famous people, fact or fiction, served as the inspiration for naming their children. I suppose I have a different view on this subject, because of the connection. The truth is that if you tell a child something long enough, eventually they will meet your expectations. Perhaps I’m being a bit crass here, but if you tell your child (by the mere calling him by his name and he knows the origin of it) that he is nothing more than an inspiration from a short lived TV show, he doesn’t have very high expectations to shoot for.

I didn’t get to pick my oldest son’s name. Karl had planned out what his first son would be named before he even met me. I tried to get him to at least switch the order of the first and middle names, but he would not relent. I went into the marriage knowing beyond the shadow of a doubt that if we ever had a boy, his name would be Michael Shawn. End of discussion. Karl chose this name because he liked it and because it had meaning to it, something he wanted for his son. Michael “Who is like God?” Shawn “God is gracious.” What a way to raise a child.

Matthew was a surprise. Due to the incompetence of my first OB doctor with this pregnancy, our only ultrasound was done too early to detect the baby’s gender. So we prepared a girl’s name and a boy’s name. Since we thought I wouldn’t have any more children, we considered him a gift. Matthew “Gift of God” Wesley “from the West” as we lived in the grand state of Arizona at the time.

Our daughter was a completely different matter. The boys would always carry their German heritage name with them, but we realized that should Greta marry and take her husband’s last name, she would have no reminder of her grandfather’s immigration as a young lad near the end of World War II and the trials he went through as a young German boy that couldn’t speak a word of English in a country that had no sympathy for any Germans. Her name was chosen to remind her of that part of her heritage. It took us a long time to look through German names for girls that weren’t about war or battle prowess. We finally settled on Greta (pearl) and Jolene “God will increase” in memory of her maternal grandpa that was dying of cancer as she was born. Her name meant something.

Many cultures name their children after the attributes they want them to have, Serenity, Faith or Grace. Some name their children before they are born and others wait until the child begins to show some personality before selecting a permanent name. Still others have had their name changed, to reveal a change in their status or character. Jacob “Deceiver” become Israel “God strives” to commemorate his night of wrestling with God.

What have you called yourself lately? Idiot, Stupid perhaps? Why not try some of the names God has for us, such as greatly beloved, chosen, dear friends, disciples, overcomers or forgiven. My husband changed the way I looked at myself, by starting to call me Gorgeous. He still calls me by my given name, but he also calls me Gorgeous, to remind me that even if I don’t like my 40 something old body that has taken a few beatings from Crohn’s Disease, that I am still special to him. That name says it all and it has encouraged me many times.

Like it or not, we have a connection to the names we are given, the names we give and the names we answer to. It’s all in the name.

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The Exercise Connection

I have a Wii fit system. It’s amazing how this board and all of its balancing mechanisms and electronic programming is able to monitor how well you are doing an exercise and whether or not you are really getting the burn you need. Just to make it more interesting and humiliating, I have the Biggest Loser game to go with it. There’s nothing like having Jillian Michaels screaming at  you to quit “phoning it in” and get real with your exercise. Better yet is having Bob Harper and his smug little smile torturing you with intense yoga workouts. Wow!

I also have a cruiser bicycle. It reminds me a lot of the old bicycle that my grandpa repaired and allowed me to use while I was at his house over the summers. My cousin and I would ride and ride and ride. We loved racing down hills and going places where the cars couldn’t go.

I have some exercise goals in mind. First of all, I’m trying to reclaim what Crohn’s Disease has tried to take from me in the last 8 months or so. I’ve had it for nearly 30 years, but the last 8 months have been brutal. I’ve signed up for a beginner’s triathlon for June 2013. My goal is to prove that anyone can do something. I want to show the world, and myself, that Crohn’s Disease doesn’t own me.

Now that the mornings in East Texas are resembling an average day instead of the humid ovens they have been most of the summer, I’m enjoying a bicycle ride in the morning for my exercise. Jillian and Bob aren’t yelling at me, pushing me harder, but I get to see my neighbors and greet them as I ride by. They are going to hold me accountable. Riding past the house that often wins the yard of the month award, I can see if my neighbors have had a successful run or not with the latest landscaping they are working on. As I ride along in my pleasant little tourist town, I’m showing visitors what a quaint and peaceful place this is to live. There is such a connection when I exercise/ride my bike, out in my community.

Besides all the wonderful opportunities for staying connected, I’m also getting a great workout in a way I’ve always loved. You doubt? My husband led out on our ride yesterday morning, being sure to include lots of uphill climbs. I could feel the labored breathing in my chest and at one point I was sure I would vomit if I didn’t get a break. Sorry Wii fit and sorry to Bob and Jillian, but you’ve never pushed me that far. So I think I’ll stick with pushing my limits with bicycling and staying connected to my community. It’s a win-win situation.

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Stolen

It’s been several weeks since the last theft, but yesterday’s caught me a bit by surprise. I expressed my frustration to my husband. “This Crohn’s Disease has stolen a day from me.” He replied with words that conveyed their concern as well as his own frustrations. “No, it stole a day from us.”

It is easy to feel selfish when pain and hindrances hit you hard. For some strange reason we begin to think we are the only ones suffering. My husband’s words, not a rebuke as much as a reminder that we are in this together, opened my eyes to see more of those that suffer indirectly. You see evidences around the house of previous thefts: a few projects I haven’t been able to complete and an emergency supper kit for the kids to prepare in case I’m down for the count and Karl is at a meeting somewhere.

At this point in time I’m still learning a lot about the disease that has had more than 25 years to learn about me. I know one type of medication that doesn’t work. I know of several others that are still to be tried, but they bring higher risks with them. With every passing stolen day and the muddled days of recovery that follow, I’m also learning more about the amazing gift of a husband who’s with me every step of the way, many times picking up the load that I’ve dropped when Crohn’s demands an immediate appearance.

The day may have been stolen from us, but somehow, together, we’ll find a way to get the most out of the days that are ours.

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