Family life, Paleo-ish eating and Coping with Chronic Illness

Posts tagged ‘Lyme Disease’

Update on my NOT sick child

When I started this blog, I had a mish mash idea of what I was hoping to accomplish.  That’s typical for me.  One thing I knew for sure: I wanted to  take some of my heart ache and write it out.  That helps me.

From the onset, I had Eddie’s permission to write about him.  He told me that he was okay with me discussing his “illness”.  But, then he decided he wasn’t okay with it, so I stopped.   If his “illness” gets to be a schizophrenic shrew, we do too.

Right now, Eddie is a healthy kid.  He’s at wrestling camp this week. He’s started feeling better after the wrestling season ended. He has been wrestling every chance he gets, ever since . Every chance.  I’ve never really seen a person like something as much as Eddie likes wrestling.  I’ve suggested he marry it.

He is feeling good. The sun is shining. The kid knows how to make hay.

The other day we had the opportunity to be interviewed on camera.  Our church is putting together some “man on the street” type of interviews.  It’s a new thing.  Folks at church are going to tell their stories on camera.  Real people explaining what happens when life’s crapstorms meet faith in Jesus Christ.  That isn’t exactly how our pastor explains it, but you get the idea.  Have I told you about all the cool things that are happening at our church lately?   A LOT of cool things.

Eddie, Scott and I participated in the interview.  None of us were overly excited to do this, but there isn’t really another choice.  Scott and I have both promised God more than one thing over the years.  We have told God that if He would give us the strength to endure, we will use our trials to help others. To glorify Him. We’ve told God to use us as He sees fit.  There’s a good chance God remembers us saying that.  You don’t really want to lie to God.

He asked to do something. We did it.

I am glad we did.  Eddie said some things I liked hearing.  One thing he said is that he is NOT a sick kid.  He is a  wrestler,  a brother, a son and a friend.  He’s all those things, and he also happens to get sick.  But he was very clear about one thing.  He is NOT a sick kid.  He will not define himself that way.  I won’t define him that way either.  I’ve learned more than one thing from Eddie.

Eddie said being sick is behind him.  So, it is.

We only have this moment to live.  Our next moment is not promised to us.  We won’t fret over moments that haven’t happened and we cannot control.

I have a friend who I have never met in person.  Several friends I HAVE met introduced me to her.  She has Lyme Disease, and my friends thought I could help.  I couldn’t help.  I have had a lot of people introduce me to people who have Lyme Disease, or love people who have Lyme Disease.  Caring people want me to be of some use to these people who have had the cruddy luck to meet Lyme in person.   I wish I could help.  I can’t

I’m happy for the introduction to these people, because I care.  I really, really do care.  I hope it helps these people to know that I care.  But, I really don’t know how to help, practically speaking.

The ridiculous truth is that I do not know how to make Lyme Disease  go away.  It’s a wicked little nightmare, and I don’t know where the exits are.  I don’t even know if Lyme Disease  is our only problem.  Can you believe that?  You would think that I would know SOMETHING!  I feel like I don’t.

How you could study and study, and research and experiment, only to find out you feel less confident about what you know than when you started.  We started 11 years ago.  I’ve always hated mysteries.

So my friend that I’ve never met is a mom.  She is married and has two sweet, kind and precious young children.  One day she was minding her own business, homeschooling her kids and doing triathlons. The next day she was fighting for her life.

Like our family, she decided to go to a special clinic in Florida.  The folks at this clinic know a lot about Lyme, and they have great ways of fighting it.  My friend has a blog. She has been writing about her experience.  I have read every word she has written.  The other day she had a heart attack during her treatment.  I keep crying about that.

It’s weird, because I really don’t know this friend.  We have  talked on the phone once, and we message each other on Facebook.  I love her though.  I love her family too.

I don’t know how to fix my friend, but I know how to love her.  I feel empathy like I have NEVER felt before.  I didn’t know that when we were fighting to get Eddie’s life back in a special clinic far away, God was giving me something too. Empathy.

This week my friend posted that she needed some extra prayers.  Her mom immediately posted, “We are always praying.”  Do you know that just telling you about what my friend’s mom said is making me cry?  You know why?  Because supportive parents.  Those guys there just crush my heart.   I’m so happy my friend has parents who love her, and who would give their own lives to get hers back.

I know JUST what is going on with this family in a way I wouldn’t if I had a different life.  I know what it’s like to look at your parents’ faces and realize that all the fears and anguish inside of you is inside of them too.   You feel badly about that, but it is also such a comfort.  When you’re in the middle of a frenzied nightmare you don’t realize just how MUCH comfort that is.  It’s like the sanity sustaining type  of comfort.  It’s everything.

It isn’t until things settle down.  Until you read about someone else’s precious parents.  That’s when it hits you.  That’s when you start bawling like a baby, because you realize you are so grateful for what God gave you.

I remember when my parents went with Eddie and me to a clinic in Kansas.  Our community had raised a LOT of money to help us with the first two weeks of our stay there.  That money was used up on our first visit.  Eddie felt better after our first visit, but that didn’t last.  We decided to go back.

I remember that somewhere in the back of my head was a place where I worried about how we would pay for this trip.  It was easy to put that worry away.  I could quickly distract myself with bigger worries.  Worrying about whether Eddie was going to keep living made bankruptcy seem like a problem that could be solved.

Scott and I had always lived within our means.  We didn’t carry credit card debt.   We decided now was as good a time as any to start.  I was going to do something I had never done before.  I was going to pay with a credit card, knowing the money was NOT in the bank.   The money wouldn’t be in the bank any time soon.

When it came time to pay, my dad suddenly pushed in front of me.  He pulled out HIS credit card.  He said, “we’re paying for this.”  Now I can’t see what I’m typing.  I’m crying again.

I know this a random post.  It’s going lots of directions you didn’t see coming. I didn’t either.  I just wanted to write my heart out, and say that I love this new friend I have.  Every word she cares to write is landing in my heart.  I’m praying for her and her family, and I am experiencing a form of empathy I didn’t know existed.  I’m walking around Costco with my sunglasses on, because I can’t seem to stop shedding tears for her.  This is empathy.

Maybe you’re getting your butt handed to you right now.  I hope you get to the other side.  I hope you can stay loose and soft through your trial, and that you resist bitterness and anger.

Faith helped me stay pliable.  I asked God to show me how to do that.  I asked God  to show me how to grow and be stronger.  I asked Him to show me how to use our struggles for a better purpose.  I didn’t know he answered all those prayers.  Now I see he did.

God is showing me that through my friend.  He’s showing me that I have new and deeper ways to care about other people that I never would have had without our struggles.  He’s showing me that if He cares enough to show me these things, then He just plain cares.  If He can give me a heart full of compassion, than His heart must be full of compassion for me too.

Here’s a song my friend’s little daughter put on my friend’s play list.  My friend’s daughter thought this song would encourage her mom.   I’ve never met my friend’s daughter, but she and her brother look like some of the nicest kids I’ve ever seen.  I have a feeling that when they’re grown ups they will know how to care about others better than most.  I can tell they’re special:

 

 

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Rejection

“Ladies Home Journal” sent me an email last week to tell me that they did not select my essay. They had a reader’s essay contest. They received 4000 submissions. Mine was not chosen. So, I guess we all now know that the LHJ panelists are illiterate. Wait until I tell my Mom on them. They’ll be sorry.

I could tell right away that the email in my inbox was a rejection. You always can tell. I thought my feelings should be hurt, but they weren’t. I didn’t actually remember that I entered that contest, and I didn’t remember what I wrote.

I’ve entered as many contests, and have submitted as many articles as I could find time to submit in the last 6 months. There’s no calculated strategy involved with my submissions. I just search for opportunities that appear to be a decent match, crank something out, and hit send.

Given the scope of writers living on this planet right now, my writing skills are below average. Probably, less than below. I’m not being modest, or fishing for compliments. It’s true.

When I read a well written book, I think that those authors are gifted artists. The combination of words they use, and the way they are able to say things without saying them, is brilliant. It’s like those writers have access to more parts of their brain than I have. I don’t begrudge them their brilliance. I’m inspired by them.

Just because I’m not a brilliant author, doesn’t mean I can’t write. I love to write. I’ve been writing some nonsense or another my whole life. I’m going to keep searching for new opportunities. I think people are meant to develop and pursue the things they love doing.

Both my parents tried publishing a book at some point in their lives. Isn’t that awesome? I remember my Dad being bent over his typewriter for an entire summer. I love that memory.

My parents’ arsenal for success included a typewriter, white out and the postman. No wonder it never happened for them. They had no delete button, no blog, no on line submissions, and they had busy lives. The fact that they each put one book together, while working and raising 5 children, seems extraordinary to me.

I’m happy to carry the torch for my parents. I have a sister who writes too. I’ve always had a feeling that she will write a great book some day. It’s sort of a contest between her and me for our parent’s love and approval. I hope you’ll join me in praying that I beat her to it. Okay, don’t really do that. That’s mean. Just pray that she gets carpal tunnel syndrome. Nothing too painful. I’m always loyal.

When I die, I want my kids to remember that I tried to develop and pursue my God given talents and interests. I’m sure about that. If my kids know that I was rejected and discouraged, but kept doing what I thought I was meant to do anyway, that will make me even happier. Of course, I’ll be dead. So, happy in they way dead people are happy.

I found the article I wrote for LHJ. Now you can see for yourself what kind of nutbags run that operation. I don’t think organizing a boycott is going too far.

Optimism

When our oldest son, Eddie, was born, he went “live” from the hospital. One day old and he had a microphone to his mouth. Eddie gurgled on cue, which was, of course, my first proof that he was advanced.

I worked at a radio station at the time in a small town in Iowa. I was a morning personality. There were likely a hundred or more people in the Hog County Capital of the world tuned into our musings every morning. I don’t mean to brag, but, you know; that’s a pretty big deal.

During my pregnancy, we held a county wide contest to see who could guess my baby’s due date. Now I look back and wonder if there is a chance I could have had an accident and hit my head some time after that period in my life. Did I hit my head so hard that I woke up a different person? The person I am today would not be okay with going live from my hospital room.

The “live from the hospital” scenario is not my only proof that I had a different brain in my 20’s than I have in my 40’s. I really DID think my son was advanced. I thought he was advanced the day he was born, and every day after that. I was so excited back then that I had invented child birth. I was sure I loved this chubby little creature in a way no mom had ever loved her child before; I just had to share, and share, and share. Yes, I was that mom. I’d like to apologize for that.

I was the Mom who was dazzled by her own life. I must say, my husband called it. One day he said, “You really think your kids are going to be perfect, don’t you?” No sarcasm, just a question based on the information he had gathered up to that point in our lives.

I said, “No. Of course I don’t.” I mean, what else are you going to say?

Eddie eventually started Kindergarten. After the first week, his teacher told me, “Eddie is the cutest, funniest little boy I have ever taught.” She had been teaching a long time. So, there you have it. I knew I had been right about him.

After Eddie’s first month of Kindergarten, his teacher called. She said, “Ah, we are having some problems with Eddie. He can be some trouble for me in the class room. He taught another boy how to spell a swear word.”

I lost a full night’s sleep after that conversation with Eddie’s Kindergarten teacher. First exposure to the real world is so harsh.

It wasn’t my fault. I blame my parents. They raised five daughters. I was the youngest. I spent 21 years in their house. That entire time they liked each other, they worked hard, were nice to other people, showed us affection, showed each other affection, and didn’t play favorites. That was a really mean thing for them to do. Because, then they just flung us out into the real world. I started my adult life with no real proof that the world would be anything but kind to me.

I guess I also have to blame my DNA. As adults, one of my sisters, who is also my best friend, has told me that there was something that really annoyed her about living with me all those years. When she told me what it was, I didn’t really dwell on it. She can be crabby sometimes. But, then my husband told me the same thing. They both told me that it is annoying that I wake up happy, and that I stay happy; especially that I wake up happy.

My husband and I have had this conversation more than once in our house in the morning. We are moving around well before sunrise. He’s very quiet. Too quiet. I say, “What’s wrong?”

He answers, “It’s 5:30 in the morning. That is what’s wrong.” He doesn’t sound very friendly.

One time my husband tried giving me a more scientific explanation of our issues. He said, “Listen Honey, we’re all different. Not everyone is born whistling ‘Dixie’ out of their behind when they get out of bed every morning. Some of us have to work harder at being happy.”

I can’t help it. I was born excited about life. I have always been genuinely optimistic that life is good, and fun, and full of interesting adventures. Between my pesky optimism and my dysfunctional, happy childhood, I had no real preparation or expectation that life would not go exactly as I envisioned.

I was so distressed over those calls from Eddie’s Kindergarten teacher, but I adapted. I began to predict what the teacher was going to tell me each year. Every conference was the same. The teacher would soften the blow by giving you the good stuff first. They would tell us Eddie is funny, smart and nice. One teacher even told us Eddie was going to be the next Jerry Seinfeld.

Just when we were feeling good about things, maybe even a little proud, the teacher would deliver the blow. “Eddie needs to pay attention. Eddie needs to be more organized. Eddie needs to stop distracting the other students. Eddie needs to stop stapling his fingers. Eddie needs to stop eating wood chips.”

I asked myself, “What are these people running here, a military school?”

So, Eddie was not going to be a model student. I learned to accept it. I even started to own it. After all, Eddie’s teacher did say he was going to be the next Jerry Seinfeld, right? Optimism.

Then, Eddie got sick. In second grade he had Strep Throat. He didn’t get better. He didn’t get better the next year either, or the next. He’s 17 now, and he’s still sick. He’s had fevers, infections, neurological issues and digestive issues. In seventh grade he started vomiting. He is a sophomore now, and the vomiting has not stopped. He’s missed most of each year of school, and his 8th grade year completely.

It started with Lyme Disease. The Lyme disease was treated, and treated and treated. After hundreds of appointments with Medical Doctors and Alternative Doctors, a 4 week stay at a fancy clinic in Wichita, KS that our community helped pay for, a trip to a respected Children’s Hospital and hours upon hours of our own research later, we know a lot of things we did not used to know. Eddie is still sick.

We’ve had periods of relief. Oh, what sweet, awesome relief it has been too. One year we rid our diet of grains, sugar, artificial sweeteners and preservatives of any kind (a really good thing we learned, and are still doing). That provided us the longest reprieve yet. Enough time for Eddie to break school records and place at State in Wrestling as a freshman in high school. Towards the end of the wrestling season though, Eddie was functioning on determination alone. Determination can only substitute as an immune system for so long. When the wrestling season was over, Eddie crashed. He crashed hard.

Over the years I have grieved. I grieve the loss of the life I had imagined for our family as a young mother. I grieve for the loss of all the things I wanted for Eddie. Sometimes you hear really mature people who have struggled with a crisis in their life say that if they had to do it over again, they would. Well, I wouldn’t. Given the choice, I would go right back to the world I made up for myself 20 years ago and live there. That was a really nice place.

But, no one is giving me that choice. So, I have learned to accommodate grief in my life. I have evolved into an optimistic, grief-stricken person. It’s conflicting.

When you have someone you love experiencing chronic illness, you have to learn how to carry grief with you every day. I’m so much better at this than I used to be. Even though I would not choose this path for our family, I can say with sincerity that this experience has given me new eyes and a brain that I like better than the one I had before. Sometimes optimism looks like arrogance; I think I needed to know that.

I’m glad I can now talk to someone who appears flat, and not assume something unkind. Now, I assume they must have troubles of their own. I’m glad that I have seen just how generous and supportive a community and friends can be to someone in need. I’m glad I have seen the importance of support and love from your family. I’m glad I have seen how faith gives hope. I’m glad I have seen and now know new ways to keep the rest of our family healthy and strong. And, I’m mostly glad that Eddie is our son.

Eddie’s life has caused me to learn a multitude of lessons I didn’t want to learn, but am glad I know. I look forward to the day when his body is completely healthy and strong. He’ll be fully grown and so wise from all the hard lessons he has learned. I just know he will be the best President of the United States our country has ever had. Optimism.

Eddie's warrior face

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