Wednesday, December 12, 2012

What do I say?

I have no idea what to call this post. For many reasons, I just can't find the right words for a title. So i'll just jump right into what I want to say.

A few of you know that I have been quite sick for about two years now. I think different things at different times have contributed to this, but I can't say for sure if one thing started it or a few things that came together to create a negative result. I have not come public with my health struggle because 1.) It has often been too painful to talk about, 2.) I hoped that it would "just go away" and 3.) I feel that many people don't understand what it's like to have a chronic illness. Now whether #3 is true or not, it's just how I've felt and I can't help it. We all live within our own thoughts and experiences, and mine has been that most people have no idea the terror, pain and frustration I have experienced. That doesn't mean I'm saying that my life has been so much worse than someone else's, but this is my journey and I know mine first-hand...not anyone else's. And let me be honest, this experience of chronic illness has been awful. In fact, awful doesn't even begin to describe it. There are days of my life that I simply can't recall. Sometimes I want to lay in a heap on the floor and cry. I have told my husband on many occasions that he should prepare for his life without me. And then I cry when I think about our son not having a mommy.

Does this all sound insane to you? YES. It does. But this is the journey of chronic illness. Constantly feeling ill and having doctors tell you nothing is wrong with you. I have had some doctors tell me that I should consider therapy. I have considered therapy, for a moment, but then I remember that i'm not depressed. That's not to say that I wouldn't benefit from counseling (I've done it before and has been such a positive experience) but my mind is not ill, it's my body. I have always known that.

Fnally, I have some clear answers. This process has been very complext. Some of that is because I believe most doctors have no idea how to treat someone with chronic symptoms. Now, if you read this and you're a doctor, feel free to challenge what i'm saying. But this has been my honest to goodness experience. Of the 20 or so doctors I've seen, only ONE has helped me (the one i'm seeing now, praise Jesus!) I have been told to "not come back." "There is nothing wrong with you." Well, DOCTOR, you're right. There is nothing "wrong" with me, i'm sick!

So after two years and too many tests to recall, I finally had a test that revaled two things: a massive bacterial infection (of sorts) in my digestive tract and an inability to digest and absorb nutrients properly. My test also showed that my body currently does not digest fats. I've learned through process of elimination that I cannot tolerate gluten (wheat) at all and have difficulty with dairy and night shade vegetables (potato, pepper, etc.) With the help of my very competent MD and ND here on the island, we are also considering that I have celiac disease. If you're not sure what celiac disease is, I encourage you to do some research because more and more people today are finding out they have it. The trouble with getting an accurate test result in my case is that a person must have a diet that includes gluten in their system for the test to be accurate. Since gluten has been eliminated from my diet completely for some time now, it's impossible for me to consider going back on gluten just for the sake of one test. With the advice of my doctors, I will be staying away from gluten and treating myself as someone with celiac.

Some of what I want to share on this blog is how I live day to day without gluten in my diet. It is actually a very manageable lifestyle. I will share tips, recipes, successes, struggles (not being able to eat out very much), and adjusing my social life to my dietary needs.

I also want to share more thoughts on what I believe, from first hand experience, the medical community is missing. My test results are very clear-cut. The problem is that this test is not covered by insurance and not ordered by the mainstream medical community. WHY? I can't answer that question yet. But I hope to at some point.

After two years, I'm making the decision to open up about my journey through chronic illness - first, because I want to help other people who are suffering. That is my main goal. But second because I owe it to myself to explain this process. I'm not sure why I feel I owe it to myself, but perhaps it's all part of the greater picture to my healing. Perhaps the greatest challenge with chronic illness is that there usally isn't just one cause. So am I answering my own question about why the medical community struggles with it? I can imagine a doctor would feel overwhelmed by needing to treat multi-layered symptoms.

Well here I go. The first of many raw and honest entries about my health journey. I hope and pray that someone who is suffering from an undiagnosed illness will read this and think, "That sounds like me." And I will be able to help and encourage them.

I woke up feeling anxious about my treatment process this morning (i'm starting a new treatment in addition to my current dietary changes after the test results I just received). Sometimes I think i'll have a panic attack. So I grabbed my Bible, flipped to Psalms but my eyes kept bouncing between verses. Which one do I read? Does God have anything here to calm my heart? Of course God does. I pray. I ask God what he wants to tell me. I immediately get Psalm 91 in my mind. I have no idea off the top of my head what Psalm 91 says. I go there, and I read. Whoa.

Psalm 91

New Living Translation (NLT)

Psalm 91

1 Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
2 This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.
3 For he will rescue you from every trap
and protect you from deadly disease.
4 He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
5 Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
6 Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.
7 Though a thousand fall at your side,
though ten thousand are dying around you,
these evils will not touch you.
8 Just open your eyes,
and see how the wicked are punished.
9 If you make the Lord your refuge,
if you make the Most High your shelter,
10 no evil will conquer you;
no plague will come near your home.
11 For he will order his angels
to protect you wherever you go.
12 They will hold you up with their hands
so you won’t even hurt your foot on a stone.
13 You will trample upon lions and cobras;
you will crush fierce lions and serpents under your feet!
14 The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
15 When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
16 I will reward them with a long life
and give them my salvation.”

1 comment:

Anne LoGrasso said...

Jenny I so so appreciate your post and it came at such a needed time for me. I will be praying for you! Believe it or not I have been struggling with some things for the past several years and rarely discuss it with others but have found myself saying similar things to Chris. The pain is hard but I often grieve that I'm not "awake" for my kids young years like I assumed I'd be. I know I didn't cause this and of course it could always be worse, but that doesn't make this any less real or the pain any less emotionally mentally and spiritually taxing. I cling to the verse "He who began a good work in you will be faithful to complete it."