Life with Sarcoidosis

Most of you know that in August of 2014, I was diagnosed with Sarcoidosis. Sarcoidosis is an inflammatory disease which can attack several different areas of the body. In my case, it is in my lungs and joints, mostly. The cause is unknown, and there is no cure. It is, however, treatable. In more severe cases, oral steroids (usually prednisone) are used. In other cases, the symptoms resolve themselves over time. My case is somewhere in between the two. I am being treated with inhaled steroids which gets the treatment directly into the effected area.

Most days, I feel fine - although I get tired more easily than before. Sometimes it effects my ability to breathe, so I have to use a rescue inhaler. But, mostly I do ok. I'm learning to pace myself. We've discovered that if I over-do things one day, the symptoms flare up and I am down for the next couple of days. 

I can always tell when it's going to be a day to take it easy because I start to run a fever. It's never very high, just enough to make me feel like I'm starting the flu. I've been foolish enough to ignore this warning sign and try to "muscle-through" it. I've learned not to do that! lol The fever gets higher and the joint pain can be excruciating.

Now, lest you think I'm looking for a "pity-party" with this post, let me assure you that I'm not! Please, not at all!!! Last August, before they came to the diagnosis of Sarcoidosis, they thought I had lung cancer!  I am grateful to have what I have and not something worse. lol

It's just that this experience is teaching me things that I want to share. 

I have good days and bad days. I'm happy to say they're both getting better. But I believe Heavenly Father is using this as an opportunity to help me grow and progress - to refine me, if you will.

There are days, the worst ones; when it's all I can do to drag myself out of bed. Everything hurts and I have no energy. The easiest thing in the world would be to give up and crawl back under the covers. And some days I simply have to do just that. But it would be SO easy to do that EVERY time it's a bad day, and I can't live with myself if I give in to that. So when I can, I drag myself up, make the bed (so I won't be so tempted to crawl back in) and try to get some small thing done that day. On those days, I find myself seeing tender mercies from my Father in the smallest things - reading my scriptures, a break in the fever, easing of the joint pain, a deep-full breath of air, someone else making dinner lol, looking outside at the beautiful place I get to live, helping my kids, prayer, etc... On these days, when I am SO aware of the tender mercies from my Father, I look ahead to the good days with such eagerness. It helps knowing the bad days don't last forever.

On good days, I still have to be careful exerting myself or I run out of air REALLY fast, and that's REALLY scary. But, I'm learning to listen to my body and pace myself. On those days, I get to be "me" again and do normal stuff like going to the gym, doing my visiting teaching, tending my home and family, serving my friends and neighbors, and learning new things. I'm still learning to pace myself, but it's getting better.

I saw a quote on Facebook the other day that really appealed to me. It said: "When a train goes through a tunnel and it gets dark, you don't throw away the ticket and jump off. You sit still and trust the engineer. Trust God today, no matter how dark your situation. God says: "You are coming out!"

I guess why I'm sharing all this is because I know we all have to endure hard things. But those "hard things" don't need to define or defeat us. Kevin always says, "It doesn't matter in life, what happens to you. How you deal with what happens to you is what's important". What a wise man - no wonder I love him so much! lol

My point is that when difficulties happen, we can use those times to learn and grow and triumph, or we can run around screaming, waving our hands in the air, give up, and be miserable. Marjorie Hinckley said: 

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”

I have Sarcoidosis. It's making my life difficult and challenging. It's teaching me to do "hard things". It's teaching me to appreciate all the wonderful aspects of this existence - great and small. I have Sarcoidosis, but that's NOT who I am. I choose to live my life to the fullest. I choose to be good and I choose to be happy.

No matter what happens in our lives, we each have a choice. We can choose to be  good, productive, and happy in whatever circumstances occur in our lives, or we can choose to give in and be miserable. There is SUCH power in that! WE get to choose for ourselves! What a gift!

Thanks for all the love, prayers, and support! I can honestly FEEL your prayers! 

Love,

Netty

PS: I went for a 3 month follow-up visit to my  pulmonologist today. My most recent x-rays show the inflammation (inflamed tumors) in my lungs are shrinking a little. It's small progress, but it's going in the direction we hope for. Slow and steady win the race!