About

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One woman’s journey through the world of unexpected, life altering chronic illness.

I am a 46 year old woman who was formally diagnosed with a rare disease called Sarcoidosis in June of 2012 after an open lung biopsy. My journey through the frustrating world of chronic illness actually began before I received my diagnosis because for about a year and half all kinds of terrifying diseases like lupus, MS and cancer were ruled out first.

If you’d like to learn more about me please visit my blog post called “This Is My Story.” Here’s the link:

https://sarcoidsoldier.wordpress.com/category/introduction/

This blog is my way of coping. Writing helps me work through my feelings, frustrations, fears and joys and quiets an active mind.

Hopefully it will be helpful to others.

Thank you for stopping by!

8 thoughts on “About”

  4. Linda Hanrahan

    My husband has been sick after he came back from 911. That winter he had his first of many severe pneumonia and pleural effusion. They drained 3 liters off both of his cheat and then had to scrape out the rest. He continued to work and every fall and winter he would be diagnosed with bronchitis and pneumonia. He had one of the worse DVT’S in his left leg. The clot went all the way to his groin. That was in 05′. January 2012 he could no longer work because of his neck and back major issues, hypertension, and the history of DVT’s. In 2013 with one of many chest x-rays from the pneumonia, the radiologist did put that he had pulmonary fibrosis. Then we were told by another pulmonologist that he didn’t have it. The fatigue has kept him in bed for days at a time. I applied for disability, he was approved in less than 90 days. Honestly that has been the only thing that has went right! Rick is 54 and I am 53. We are raising our second family. Our daughter Gracie who is 11yrs (late life surpise!) And our 6 year old granddaughter who we adopted at birth. I work in a emergency room as a paramedic. Tuesday, Rick was feeling so bad he didn’t want to get out of bed. We had an appointment we could not miss so I forced him to get up. After we got done he complained of a headache and shirt of breath. Out of frustration I told him to go to the ER before he went back home to bed. I had clocked in and working when I walked in his room. I noticed his heart rate was 36 beats a minute O2 sat’s @ 88% on 2 liters of oxygen. His blood pressure was 190/100. Long story short he was admitted and received a pacemaker the next day. It was the cardiologist that told us Rick had sarcoidosis. He had reviewed his chest x-rays from 2001 until now. It had been there all these years!!! I brought Rick home yesterday on home oxygen. Next week he has an appointment to see a pulmonologist, and his family Dr. So our beginning of this new diagnosis has just begin. I am so angry at the radiologist that has NEVER once noticed the sarcoidosis! I feel my husband is now in the late stages of the lung disease. We have known for years something was terribly wrong but could never get anywhere. Now here we are with his lungs so damaged that his heart was giving out. The brain fog you talk about he has had for years ! He has had all these symptoms!
    I know I am rambling and I’m sorry. We are just so frustrated and happy at the same time that we finally has a diagnosis that explains everything.

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    1. Wow Linda. I am so very sorry for what your husband and you have gone through. This disease is very complicated, often misdiagnosed and frequently misunderstood. I hope and pray that now that you have a diagnosis, something positive will come of it and that your husband receives treatment that improves the quality of his life. Don’t be sorry for rambling. I totally understand the need to connect with others who understand which is a big reason that I started my blog in the first place. I wanted others to know that they are not alone. I wish the best for both of you and please know that I am here if you need to ramble…any time.

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