Sunday, March 17, 2019

An Addy Butterfly

The air is filled with fluttering wings
a cascade of blue struggling on through
holding in their hearts such wonderful dreams
of so much living they'd still love to do

Though eye can not see nor heart feel their pain
only to one who listens although the answers are plight
a soul that searches for sun instead of rain
will surely make it on life's downward flight

The suffering is so real, they so often hide
only the creator knows what they endure
each little butterfly was created with pride
oh how they long for a much needed cure

Many wings fly onward trying their best
to take what life offers and hold on tight
never able to explain and never able to rest
each day they awaken ready for another fight

Take comfort in knowing each is a worthy soul
God always cradles them in his loving arms
he gives them strength and shows them to be bold
he created them in his image like blue charms

Dewey eyed and charming they face each day
though the valleys may be deep with fear and dread
they flutter their wings and take time to pray
then the light shines even more from the hills ahead

One can even light beside you like a sunbeam
in all of its beauty and glory for a little while
it may show happiness with a huge gleam
depending on the master with a hopeful smile

So when a blue, Addy butterfly flutters on by
it could be someone you cherish and love
take time to treasure it and remember why
it's a heaven sent creation from God above

© Susie Swanson, 2019

Not something you all would expect me to post on here but I wrote this as a tribute and honor to all the Addison Disease sufferers out there like me since the blue butterfly is a symbol of Addison's disease. I know this is one of those rare diseases that not even doctors know enough about to be able to treat it in so many ways.

Recently I wrote a letter and managed to get my local newspaper to publish it to bring awareness to Rare disease Day which was on February 28th. I especially wanted to bring awareness to the medical community and hope it did some good since I've experienced first hand how hard it is to get the right kind of treatment after two ER visits last Fall. If I hadn't carried in my paper work from the National Adrenal Disease Foundation and gave it to the attending physcians they wouldn't have known to give me a high dose of an emergency injection steroids and also in my IV and my organs would have shut down in a matter of minutes because my cortisol was so low. Steroids are the lifeline to an Addison patient and we live on them every day and have to learn how much and what amount it takes to keep our bodies going. 

I had never come to know of anyone else in our town or community that has it till that letter was published. Two more ladies got in touch with me and that was a God answered prayer for sure. We keep in touch and support one another now. I have come to know some on facebook and one in particular and we stay in touch that way. When I first got diagnosed she introduced me to some facebook groups and I have learned so much following these brave but awesome people and feel so blessed more each day to be able to know what's going on with my body and be able to learn so much.

This is a very hard disease to live with and hard to explain just what it can do to our bodies. It's changed my life in ways that I could never explain. But I feel so blessed that God is walking this path with me and carrying me when I need him the most. Thank you all for your patience, support, encouraging words and most of all your prayers. May God Bless you all. ~Susie~


  1. Oh, Susie- I am so sorry that you have to struggle with a disease like Addisons. How horrible! I will never understand, this side of heaven, why good people need suffer like they do. You are a brave soul, dear heart.

    I am so glad that you found others that can support you as you live with Addison's. I don't think that anyone that has not suffered with it would understand it enough to be of any real support.

    I am keeping you in my prayers and that poem will haunt me, I think. Beautiful and heart-rending. xo Diana

  2. The blue butterfly is a lovely symbol. I am glad you have found support in others. It is so sad that the disease is making things very hard for you. I will lift you up in prayer.

  3. Susie, I'm so glad you found some ladies that are familiar with what you're going through and you can help one another through all this. The blue Addy butterfly is beautiful, and what a lovely poem this is. I'm sorry this is such a hard disease to live with, but what a blessing that you have people who understand and to help you along the way. Take care, my dear friend. And I hope you feel better.

    love, ~Sheri

  4. Susie, I loved your poem. I read it aloud . Poetry has more meaning to me when reading aloud. I love the butterflies. What a wonderful blue color.
    It made me feel lifted in spirit when I read that you have made some friends who through suffering the same disease and now can help guide one another . I hope you have comfort in that. Susie , God will be with you each and every moment of this struggle. I pray that He will ease the pain and bad days will get better for you and the others. Sending you big hugs. Blessings to you, my dear friend, love you, xoxo, Susie

  5. Beautiful photo and heartfelt poem, Susie. Thinking of you as you struggle with this disease. I'm glad you have found others to connect to and get support from. I'm sure it must feel quite lonely at times to suffer from a rare disease that is so difficult to treat. Hugs to you.

  6. Susie,
    I didn't know you had Addison Disease. Your poem is so touching and means so much since I know now that the blue butterfly symbolizes this illness. My thoughts and prayers are with you, my friend.

  7. Thank you for your prayers for my son, Susie. He is home now, healing and doing better. It's been an exhausting week, but I'm so thankful he's ok. I am blessed with blog friends like you are always there with comforting and thoughtful words.

    love, ~Sheri