Autoimmune Disease

Endurance.

The ability to deal with pain or suffering that continues for a long time.

Brave.

feeling or showing no fear; not afraid.

Strong.

having great physical power or  ability: not easy to break or damage.

Courage.

the ability to do something that you know is difficult or dangerous.

I’ve heard such compliments being used to compare with my name. And since my journey to be well, I’ve wanted nothing more than to be seen as brave, courageous, strong, and inspirational. I’ve always felt that I’ve been blessed with the ability to endure whatever life throws at me. However, since falling into a world full of sickness and pain, I can’t help but to feel the following:

Weak.

likely to break or stop working properly: not able to handle weight, pressure, or strain.

Unsure.

having doubt about something; unconvinced or uncertain.

Insufficient.

Not having or providing enough of what is needed; not sufficient. Not enough.

The feeling of these negative describers is only burned deeper in my brain since realizing that I will never be able to accomplish a college degree, I will never be able to hold a full time job, I will never be able to accomplish my life long dream of having and raising my own family. Society has inscribed these as goals into my life and it is my job to change them. For some people, these goals are great ones. These dreams are such accomplishments and meant to be celebrated greatly, but for people, like me, with debilitating illnesses, our dreams fall somewhat short of society’s inscriptions. And that’s ok! It’s our job to find what goals and accomplishments in life will be for us.

There are so many thoughts that go into the reasons as to why I won’t be able to accomplish such goals in my life. My own goal each and every day is to survive without maximum pain, to get done as much of what I can that needs to be done around the house before I become motionless and stiff, full of pain. Just as a “normal person” would celebrate their work at their full time job, I celebrate what can be accomplished each day as I get it done at my job as a homemaker.

I deeply owe so much gratitude to my husband, who has vowed to carry me through my flares and bend with me when life throws me a curve. Our life as a married couple is so unpredictable because of my illnesses. It could be as drastic as one second goes by before I’m feeling pain, before the pain goes away. It’s so unpredictable and something that requires such flexibility. For any “normal” couple, they would be settling down, and beginning to start their family. For us to add a child into this crazy, inflexible (we’re the flexible ones here), high maintenance, bed ridden, pain filled, pill popping life seems more than selfish to us. Not to mention the huge possibility of passing on such illnesses. No one deserves to feel this way. I wouldn’t wish this on anyone. Our lives are different. And for us that’s ok.

My illnesses’ and I’s relationship is strictly oil & water. I feel we’ve been shaken together within the past several days. Here’s to waiting for separation, which in past occasions has taken up to 8 weeks. I’ve felt the disease sink in – into my aching joints, into my powerless stomach, into my weakened muscles, inflaming the cartilage the protects my heart and lungs, my paper thin skin begins to itch and bruise, my ears pick up ringing that is somehow only for them, and any task that should be considered housework, now my only job, becomes a painful marathon to complete.

“I feel so cold in my skin, feel so paper thin. I know I’ll wither, so peel away the bark, because nothing grows when  it is dark. In spite of all my fears, I can see it all so clear.”- Of Monsters and Men

Trust.

assured reliance on the character, ability, strength, or truth of someone or something; one in which confidence is placed.

Through this journey, that will continue through our lives, I find my strength, my bravery, my courage, and my endurance in my Provider, my Healer, and my Lord.I know that God did not mean to pain me in any way, but to make me a strong soldier for Him when placing Fibromyalgia, Celiac disease, Sjogren’s Syndrome, and Bipolar II disorder within me. I will not ask him “Why me?” but instead “What can I learn?” & “How can I grow stronger?”  God has a purpose for my pain, a reason for my struggle, and a reward for my faithfulness. I will Trust Him and I will not give up.

Sometimes, I will feel that I’ve broken. But I will Trust that I’ve only bent. It’s ok to cry and to feel like you cannot do it, but rise up again. And do it. Because you’ve felt this discomfort  before. You’ve felt these feelings before. You’ve felt this doubt before. You’ve felt this pain before. You’ve held onto hope before. And I’ve held onto hope before. So Brady and I will hold on to our Hope, because we’ve done it before, and made it through.

My image matters to me. And through my battle with autoimmune disease, fibromyalgia, and mental illness, I pray that the image I portray is one of bravery, courage, and strength. Thank you so much, for those who have shared their portrayal of my image to me. It means more than you could know.

I owe my life to God.

I owe my love for life to Brady and my family.

HOPE.

Hold On Pain Ends.

“Most people live in fear of some terrible event changing in their lives. For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You fight and you survive. There is no other way. You adapt, and your life changes, but in the end, you go on with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.” – Jamie Weisman, As I Live and Breathe: Notes of a Patient-Doctor

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