At age 22 while living in Mongolia I developed a severe chronic pain condition that effects every aspect of my life. Continuing this blog reminds me that life's challenges are stepping stones meant to lift us, not roadblocks meant to defeat us.

Saturday, July 2, 2011

A poem, for when you hit rock bottom.

"The Bottom of the Well" - by Ashley Mansfield

It's a beautiful and sunny day, the sky is bright and blue.
This is how life looks when things go good for you.
You are so grateful for the many blessings you have now,
happiness, joy, and laughter are easy to be found.
But this alone is not all that life was meant to be,
God said that there must be opposition in all things.

It is like we are standing next to a deep empty well,
when we are at the top things are going swell.
Then we slide down the rope a little when a hard time hits,
how far down we go can depend on our faith and the strength of our grip.
But there are times when God has more that He wants us to know,
deeper compassion, empathy, a test of faith, so deep down the well we go...

Down suffering in the darkness it is easier to forget,
that there is a sun above, and a purpose to this test.
It can be hard to understand why the illness, pain, or loss you feel
is not simply taken away, forgiven, fixed or healed.
When we first experience rock bottom it can be more than we can stand,
it may seem we are forgotten, that God surely doesn't understand.

But in your hands you hold the rope that can lead you out again,
if you don't have strength to climb out now, just cling to it as hard as you can.
For this rope is your faith and the gospel, and all the truths you know,
if you forsake it you are stuck down deep and have only darker places to go.
Cling to the rope with all your might when doubt and fear set in,
hold on until you are pulled out or have strength to climb again.

Though we may feel forsaken we are never beyond reach,
no matter how dark it is, no matter how deep.
We are not meant to suffer but we are meant to learn,
our understanding must be deepened for we have and a royal crown to earn.
He knows how much we can take and will pull us out in time,
but sometimes we need strengthening, so He gives us the strength to climb.

And oh how sweet it is when we again reach the top,
with renewed appreciation for what happiness is, and what it is not.
The sun is brighter, moments sweeter, blessings more divine,
you will think to rejoice everyday that you hung on and made the climb.
And if you are ever faced with such deep trials again,
you have been down there before, and will know how to get out again.

When horrible horrible things happen, I have seen people doubt God's love. I do know that sometimes it can be hard to trust and love God when He lets us suffer so much (sometimes for a long time), but I also know that if we turn away from Him we are turning away from our one true chance for real happiness. If we can summon the strength to keep hanging on, even if we don't have strength for much else, we will be blessed and in time we will feel the warmth of sunshine and His love and peace again. I don't know why things must be so hard but I do know this, and it has helped me to look forward to the future with hope.

Wednesday, June 15, 2011

Here we go again... ;)

Hey! I kept writing here after I got back from Mongolia because it helped me stay positive about everything that was happening. It has been 20 months since I got sick, and we recently started up the doctor appointments and tests again because sometimes it feels like my pain is worsening. We are doing more tests to check the celiac disease theory but are now actually pretty sure that isn't the cause of my illness pain. We are checking for neurological autoimmune diseases now, I did have a very detailed MRI and luckily it came back normal. So we still don't have any answers, but at least we don't have bad answers. ;)

I never thought that this would still be going on, for years or maybe even permanently, so, to help myself make the most of this I want to start writing here again.

Even though I am not currently following a gluten free diet, I learned so much about it and I learned how many people it affects, so I want to share what I learned about celiac disease real quick. Chances are that we all know someone who has this disease, and it is helpful if we understand it :)


- Celiac disease is classified as an auto immune disorder, and gluten (even trace amounts, as small as a single crumb) causes the body to attack itself. It prevents the body from absorbing nutrients in the intestines, and can damage other parts of the body.

-It can take several weeks for the body to stop attacking itself after gluten is gone from the system, and can take even longer to heal. (this is why most ppl with celiac disease can never ever cheat and are so "picky" and careful about everything they eat. Even taking a bite off a fork that has touched food with gluten, or using a pot that hasn't been washed well, can cause pain and damage that takes weeks to recover from)

- Gluten is not only in wheat. It is in barley, rye, and some other uncommon grains. So anything that is malted (from barley) has gluten. Even oats, which are naturally gluten free, are stored in the same silos as wheat so they make special gluten free oats.

-By law food companies are required to say when a food contains wheat, but they are not required to say if it contains gluten. Just because something says it is wheat free doesn't mean it is gluten free.

- Eating out is so hard because even when you ask for a salad with no croutons, the cook that puts the croutons on the other salad uses the same hands to get your lettuce, and even that can cause a reaction.

- Things like tortilla chips and French fries are naturally gluten free, but in restaurants and fast food places these are usually fried in the same oil as things with gluten (breaded chicken, flour tortillas, etc) so they can't be eaten.

- Modified food starch is often from wheat, can't be eaten. This is in almost everything: candy, yogurt, popsicles, fruit-snacks, instant potatoes, ranch dressing, lunch meat, some cheese. So even when something seems naturally gluten free (like yogurt or lunch meat) it is really important to always check the ingredients.

Saturday, January 15, 2011


Hey I found out that the thing they saw on my back is just a small cyst, and after further examination they don't think that is the source of my pain. We don't know why the cyst is there, but it is small and doesn't need to be removed surgically. This is actually okay news, we still don't know exactly why I am in so much pain but I really didn't want to have anything wrong with my spinal cord, so I am pretty relieved. I am trying a normal diet with gluten now because I hadn't noticed any benefits from following the diet the past several months, so we will see if eating gluten makes me worse. I had pizza hut stuffed crust pizza this week and it was even better than I remembered it ;) Thanks for the support!

Friday, January 7, 2011

Another health finding, maybe the real cause.

Over christmas break I went to see a neurology specialist at the University of San Francisco, and after examination he noticed I have an area of skin that goes from my back on the right side and wraps around my right ribs that has sensory abnormalities, and he suggested a targeted MRI scan of that area of my spine. I heard the results yesterday, and they found a mass on the right side of my spinal cord at T9 and T10.
We don't know if it is a cyst or a tumor yet, it is a little smaller than a centimeter and luckily it isn't pushing into the spinal cord. It is at the base of some of my nerve roots, so that explains the severe right side pain I've been having the past year. We are talking with neuro surgeons on Monday to discuss options. This is actually good news, as we now know the source of the pain. It is also a good sign that I have been sick for a year and the tumor is still pretty small. They think it might have been too small to be noticed on MRIs I had done months ago, I'm very grateful that we decided to check for this. This also probably means that I don't have celiac disease, so I'm pretty excited about maybe getting to eat normal pizza again ;) I'll keep you posted.