Monthly Archives: March 2016

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Tomorrow is one of my favorite days, Easter! We celebrate the Resurrection of Jesus and His glorious promise of eternal life.  As I celebrate this day with family, I am grateful for the warm weather.  It will make my body happy and way more agreeable.  

I want to share something that I have not told many.  Reason being, if you don’t live with, or love someone, in chronic pain this will be hard to understand.  As an adult, my darkest point was when I spent 7 months in an episode of dizziness that I never thought would end.  My neurologist wasn’t sure of the cause. I was dizzy all day, every day.  Every single day. I recall the day about 5 months in when I  understood why a person living in chronic pain would choose to take his life.  Now, please don’t misunderstand me. I don’t condone suicide. I do not believe that is a choice.   My life is a cherished gift from God. All life is a gift from God.  But during that 7 month period, and at occasional times since then, God’s eternal promise is the only thing that gets me through.  Knowing that one day through eternal life,  I will no longer be bound to this Earthly body.  One day there will be no pain. That’s just enough to get me through. I do hope that day is far from now, though.

As I fumble through this journey with chronic pain and dizziness, I have asked: “Why me?” on more than one occasion.  But I never remember a time when I asked: “Why me, God?”  I  don’t blame God for my chronic pain.  Quite the opposite actually.  I thank God every single day.  I thank God for my health.  I thank Him for the health of my family.  And when my days are not so good, I thank God for getting me through the day. Truth be told, my life is wonderful.  

I have found much hope and relief from reading the Bible.  I have verses placed throughout my home, in my purse, on my desk at work, and reading these are therapeutic for me.  I have a verse for every character trait that I struggle with. I have a verse for strength, a verse for healing, a verse for letting go,  a verse for anxiety.  When my husband quit his job to pursue a different career, he put a verse near our computer. Several years later, it is still there and I read it nearly every day.

When I am in need of a verse, one is instantly there for me.  The perfect one. Every single time. I will end with one today from the Book of Colossians:

And let the peace of Christ rule in your hearts, to which indeed you were called in one body.  And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of Lord Jesus, giving thanks to God the Father through him.  ~Colossians 3:15-17

Wishing all of you a safe and joyous Easter!

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© Amber Richilea and slapinthehead, 2016. Unauthorized use and/or duplication of this material without express and written permission from this site’s author is strictly prohibited.

 

 

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To Raise Gluten-free or not Gluten-free?

Being a parent is tough. For me, being a parent while struggling with chronic disease and illness is even harder. But wondering if either of my girls will end up living in a body like mine is heart-wrenching. I watch my oldest daughter very closely. At times, I am positive I see cervical dystonia in her. It destroys me to think she could develop such a painful disease from me.

But that’s not what I want to talk about. Today, I want to share why my children are gluten-free.

Having celiac disease and living gluten-free has taught me three things:

  1. Ingesting even the tiniest amount of gluten will make me sicker than anything!
  2. We live in a society where the focal point of many celebrations and holidays is food.
  3. Food is often used as a reward.

Ponder those last two for a minute.

When my first daughter was born, my husband and I struggled with the idea of keeping her gluten-free from birth. The reason? Several factors go into developing celiac disease. Most relevant for us: a person needs to have the DQ2 and/or DQ8 gene, and the person has to ingest gluten regularly. So if we had genetic testing done, and she did not have either gene, she wouldn’t develop celiac disease. End of discussion. If she tested positive for one or both of the genes, well, that was tougher. In that case, what was the reasonable thing to do? Was it fair to eliminate all gluten from her diet to avoid developing celiac disease?  We had good reason to believe she carried at least one gene. Myself, my brother, and my mother all have celiac disease. This was not a decision we took lightly. We spoke with our families. We reached out to the gluten-free community. We spoke to our pediatrician. Ultimately, we made the decision to have our daughter genetically tested. The referral for genetic testing had to come from a gastrologist so we made an appointment with the head of gastrology at a major children’s hospital.

Now the gastrologist was under the impression that we were seeing her because we suspected our daughter had celiac disease. We explained several times that she didn’t have celiac disease but we wanted her to have the genetic testing, so we could prevent her from ever developing celiac disease by keeping her gluten-free. The response we got from the doctor floored us. She asked us why we would want to deprive our child of the joys of a pizza party at school? She wanted to know why we would want to single out our child by not allowing her to have cake at a friend’s birthday party? Her advice: let her eat gluten and if she became symptomatic, bring her in for a colonoscopy. Let’s break that down:  let her enjoy food,  put her through an invasive test if she became sick,  and if the test came back positive for celiac, then she would have developed the disease we were trying to avoid in the first place!?! There are about 300 known symptoms for celiac disease and many of them don’t occur in the digestive system. What if she had no digestive symptoms at all?  Now long would she go undiagnosed with her body attacking itself?

Having celiac disease myself, my perspective may be different from the norm, but food is not the most important part of either of the events the doctor mentioned.  The doctor resisted the idea of genetic testing but we were persistent. It turned out our daughter has both the DQ2 and DQ8 genes. So we have kept her gluten-free. She is on a very limited gluten diet. This meaning, we don’t obsess over making sure every thing she eats is 100% gluten-free the way we do with me. We never purposefully allow her to eat gluten, but we do make sure anyone with her understands she will not get sick if she accidently eats gluten. And on rare occasions, accidents happen. She ingests at most, tiny amounts of gluten.

Family get-togethers as well as events at church, provide lots of gluten-free options. She lives in a gluten-free home. Most of her friends have gluten-free foods when she is with them, and we always make sure to bring gluten-free treats to any event she attends. A gluten-free life is all she has ever known.  Our daughter is almost ten and just within the past year she began to ask questions about being gluten-free. She has also started getting upset when she wants something and can’t eat it. And I totally understand. Eventually, she will get to make the decision as to whether she stays gluten-free, and if she decides to eat gluten we will respect that decision. While this was not an easy decision, years later we still feel we made the right choice.

As a parent, I spend my days making lots of decisions about the well-being of my children. Some are made in a split second and some of them are thoughtfully decided through time and prayer. My husband and I have always tried to do what we think is best for our children. We know that not everyone agrees with our gluten-free decision. Both of our daughters are happy and very healthy. We spend our days making memories that don’t surround food. That’s good enough for us.

 

I’ve Made it Another Year!

Today is my 39th birthday. Today was also my first (and last) speech therapy appointment.

This birthday comes at a great time in my life! But that wasn’t always the case. If I look back on the birthday when my cervical dystonia was at its worst, I was 5 months into a 7-month long episode of chronic dizziness. I didn’t know if the dizziness would ever end or if it would become my new normal. I was hardly able to move my head to the right or to the left and my shoulders were in a semi-permanent shrug position. My neck and shoulders were full of hard knots and I was in so much pain. That was a really dark time for me. While I wasn’t suicidal, there were plenty of days when the only thing that got me through was knowing that one day I would die and I wouldn’t be bound to my earthly body anymore.

On this birthday, nearly 8 years later, I find myself feeling quite different in the same body. Through a combination of meds, daily massages, physical therapy, heat, and eliminating activities and movements that trigger episodes, I am so much better. While I celebrate today, birthdays are still tough for me. I know the reality of dystonia is that next year may not be as good.

Today also happened to be the first and last day of speech therapy for me.  As I headed in, I was skeptical that anything could be done for my speech and memory issues. I was not surprised when I failed nearly every part of the evaluation:
*”Repeat back these 6 words”—Did it once, failed it the second time through, and five minutes later could only remember one of the words.
*”Given a series of numbers, repeat them back to me in the opposite order I give them.”—Yep, failed that one too.
*”Repeat this sentence back.”–So close, but failed to remember all the words in the sentence.
*”Identify these objects.”—Complete fail.

So yes, the tests revealed that I had some concerning memory issues. The good news, they are not a result of the dystonia. I keep reminding myself this is good news. It doesn’t feel so good at the moment. The bad news, my memory and speech issues are a side effect of taking high doses of valium for a prolonged period. Speech therapy is not going to change that. But since it is a side effect of the medicine, if I ever stop taking it, all memory issues should go away. Honestly, none of this was a surprise.

What it comes down to for me, pick your poison.

As I said, I am doing well right now. Why? A big part of that is thanks to a steady stream of valium in my body 24 hours a day. Memory issues are just one of several nasty side effects of taking valium. At my biannual appointment last month, my neurologist and I agreed that I am in a good place. He didn’t want to change anything about my treatment plan and I completely agreed. We also discussed the risk of taking valium long term, but the risk is worth the benefit. I am still able to work full time, my pain level is down, my dizziness has almost disappeared completely, my muscles are looser, and I have managed to keep botox out of my neck for another 6 months. However, the trade-off of taking valium is not remembering the names of the students in my classroom. The trade-off is calling the laundry basket a television and not realizing I said anything wrong.The trade-off is thinking so hard to form sentences that may or may not even make sense. The trade-off is strangers thinking I am drunk.

I don’t know what my future with dystonia will be. Hopefully, the future will yield the development of better medications, with fewer side effects. Or maybe even a cure. Until that time, I will continue my love/hate relationship with valium, be grateful to God for how my body is today, celebrate this wonderful birthday, and try to live each day with a good sense of humor.

happy last birthday

I tried to explain to my children that I didn’t want to celebrate my birthday next year because I will turn the big 40. So, this is what was put on my cake!  🙂