Thursday, June 19, 2014

Sjogren's Syndrome

This post is not intended to be a "poor me" story. This is primarily for my friends and family who aren't local and are interested in keeping up with my family and me. So feel free to take it or leave it. :)

Most people who know me are aware that I've had joint pain almost my entire life. At the age of 12 I was told by a doctor to stop running track because of my knees. I was told not to water ski. At one point they thought I had Lupus but the test was negative. I did run track in high school and loved high jump. I don't remember my knees being a problem at that point. As I got older my pain subsided and became a nonissue.

Around the age of 35 it came back with a vengeance. I had such bad pain and stiffness that I felt like a 90 year old woman whose joints are stiff and painful most of the time. I couldn't sit Indian style because my left hip was so stiff and painful that my leg wouldn't lay down that way. Being in any position for very long made my joints stiff and hurt to "unfold". My lower back also gave me a lot of problems. So I decided to see a rheumatologist.

My inflammation levels were 3 times the level of a normal person. He thought I had Lupus again. Test was negative again. He diagnosed me with unspecific/generalized autoimmune disease. He put me on meds. The meds made me feel awful. And they didn't even bring my inflammation down to normal.

Fast forward...I wanted to have another baby so I got off the meds at the advice of my OBGYN. I had 3 miscarriages (possibly because of the autoimmune disease) and never had another baby. I quit seeing that rheumatologist and researched inflammation and joint pain on my own. I read an article that said gluten can cause inflammation and joint pain.

I had nothing to lose.

I've been gluten free over 3 years now. My pain is CONSIDERABLY better. I am not 100% pain free, but I am so much better that I will never eat gluten again (and I love me some bread). I had my levels checked 6-9 months after going gluten-free and my inflammation was gone.

G-O-N-E.

However, I began having more problems about a year ago. While my general joint pain is still massively improved, I began having bladder issues, chest pain, tummy trouble, and extreme thirst.

Last week I was finally diagnosed. The thing we've been searching for since I was 12 years old has been identified. It's a chronic autoimmune disease called Sjogren's Syndrome ("showgrens").

"Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease. Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma."

While my eyes and skin are obviously dry, thankfully my mouth isn't really. My extreme thirst may be linked to my recent onset of anemia. But this explains all my GI problems over the years, my inflammation (currently chest and bladder and blood tests indicate my inflammation is elevated again) and joint pain, dry peeling lips, and occasional fatigue.

I'm so thankful to have a diagnosis. There is no cure but at least I know what the problem is. I can go forward knowing how to take care of myself. I can treat the symptoms and at least have some peace of mind.

Shortly before my diagnosis I found out my genetic skin condition I've had my whole life is called Icthyosis. Since it's not anything new I shouldn't have been too concerned...it was just nice to know it has a name. But as I was going forward with my new rheumatologist in searching for my autoimmune issues, my life long Icthyosis was getting worse. I have Icthyosis Vulgaris which manifests on the hands and feet. But there's also a general Icthyosis which is dry, flaky, scaly skin all over the body. I have seen horrible photos of people that have severe cases, of which I do not. But over the past couple of months my arms and legs are much worse - more dry, flaky, and scaly and at this point embarrassing.




After my diagnosis I was depressed for about a week. I was so overwhelmed with the idea that I have a chronic condition, on top of this life long genetic skin condition that is getting worse. Not knowing if I'll get worse, if I'll get cancer, if my symptoms will ever become unmanageable.

But then I was reminded that my God is bigger than that. He may not heal me or make it better but I know He allowed this for a reason. I know I can bring glory to His name through this, if I'll let Him work in my heart. If I can take my eyes off myself and show the world His Love and Greatness through my pain, then I am powerful in His Kingdom!

And that brings Him glory and me joy. There's no better way to live.

I pray that this condition will only strengthen my relationship with Him as I let Him use it for His glory and His goodness. I pray that it will cause me to draw closer to Him so that He can use me for His glory and honor. And His alone.

Please pray for me as I walk forward in this. I know the enemy of my soul wants to use this to ruin me. He got close last week as I struggled with doubts and fears and sorry-for-myself-ness. But I have God on my side and He is greater and stronger than my enemy!

Psalm 18:29 "In your strength I can crush an army; with my God I can scale any wall."

My sweet husband wrote me a story yesterday that really encouraged my soul. It's an excellent word picture of what living for Jesus looks like:

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The Letter

She sat in the back of the group, so many others around her, all of them anxious for Jesus to come and give them their life assignments.  When He walked in and smiled with love looking both at all of them and at each of them simultaneously, their hearts melted for Him as they had since the first time He rescued them from their respective and very different living hells.  As Jesus walked through the room, he would gently touch each person, some on their cheeks, some on their shoulders, always with a smile and a look of deepest love.  He handed each of them an envelope and then moved on to the next person.  The envelopes were sealed, and on the outside of each was written “your mission”.  Jesus explained that each envelope had inside of it a description of the path that lay in front of each of them, and that He needed then each to share His love, His lordship, and His message as they walked that path.

Some tore into the envelopes excitedly, some apprehensively as Jesus moved on to the rest of the waiting people.  One lady jumped up excitedly and said she was going to Africa, and she’d always had a love of that country and couldn’t wait to go.  One man read his out loud soberly with a shaking hand: “Martyr in Iraq?,” and that although he had family there and wanted them saved, the idea of dying for them was a bitter pill.  “My Child,” Jesus said, “it is by seeing you die for me that many of your family will realize that I am worth dying for, and they will understand that not only did I die for them, but that through me their death here on earth will lead to life instead of end it.”.  

A tear slowly rolled down the man’s face and he said “I’m afraid.”

“I understand.  I was afraid of the road I needed to walk too.  But because I did you’re here now.  And I will be with you at every step.  I know you can do this.” and he wrapped his arms around the man, then kissed his forehead and the man nodded, smiled, and walked out to start his journey.

Now fighting fear, each of the remaining people were a little slower to take their envelopes from Jesus, but some of them were relieved to find that their envelopes held missions like “You will teach children” or “You will be my light in an affluent neighborhood”.  Beside her, a man opened his envelope and his face sank.  “You will need to forgive your unfaithful wife”, his letter read.  “I didn’t even know she had been unfaithful,” he said to Jesus.

“I understand.” said Jesus, “I’ve been betrayed more times than you could count.  But her heart is repentant, and both you and me loving her through this will be a part of her healing from the deep rejection she’s felt from her father and other men throughout her life.  And remember, I will walk this road with you.”  The man got up, embraced Jesus, then walked off and started his journey.

When at last she opened her envelope and read her letter she was confused.  It read, “You will suffer from chronic illness and reach others through it” but nothing more.  She started to breathe heavily and could feel a panic coming over her as she ran through all the possible ramifications of having a chronic illness.  She feared the idea of consistent pain, but more than anything she feared the idea of not knowing what exactly she would endure.

“Why are you afraid?” said Jesus

“Why did you give this to me?” she asked, “I’m not strong enough for this.  Let me die from some cancer or an accident.  Let me be martyred for you.  I’m willing to suffer betrayal or abuse but the idea of lifelong, persistent illness terrifies me.”

“I want you to meet someone.” He said, and only then did she realize that everyone else in the room was gone.  They were outside, and a young woman walked up behind Jesus and took His hand as she stood beside Him.

“This is Olivia.” said Jesus, “I’ve taken her from your future so you could see how important the road I’ve chosen for you is.  Let me let her tell you herself.”

“Hello,” said Olivia, “I know it’s hard for you to understand but I’m actually much older than I look; I actually died at age 63 and this is my new body,” and she twirled around and looked no older than 30.  “At the age of 22 I found out that I had a chronic illness.  I’d grown up in church and hoped that God would heal me but when I didn’t, I became bitter and resentful that my life would be filled with pain, and lost all hope shortly after my 25th birthday.  For the next 35 years I built walls around my heart, not letting anyone in but also locking myself in.  People tried to reach me, to tell me that God loved me, but they didn’t understand.  God hadn’t given them this disease He’d afflicted me with.  I hated them like I hated Him.  And then God sent me you when I was 61 years old.  I’d been to lots of meetings with others who had my same condition, talking about coping, talking about treatments and doctors, but I’d never met anyone like you.  You had the same condition as me in your body, but your heart couldn’t have been more different than mine.  You were filled with life, with joy, with love.  At first I thought you were just in denial, but I talked to you and found out you were absolutely aware of reality, but that your perspective was completely different.  You knew and loved Jesus while you walked through the illness instead of blaming Him for the illness.  And you showed me, through that little peep-hole I’d left in the wall I’d built, that I could do the same thing.  With His help and through seeing that truth in you I let you talk to me, pray with me, and lead me out of the prison I was in.  Not a prison of my body like I thought but a prison of my heart.  I can never fully express how grateful I am that someone I could really relate to showed me how much Jesus could change me too.”

Olivia hugged her, kissed her on both cheeks, and then walked away.

“You see,” said Jesus, “I tried to reach her in so many ways.  She didn’t believe that I could relate to her suffering just because it was different than what I suffered.  She needs you to show her that, and the only way she’ll trust that you relate to her is if you experience what she experienced: the slow walk of a chronic illness.  I’ve given others different tasks, and different roads.  And know that I didn’t create this illness or afflict you with it, I’m merely using what was already created by the breaking of the world through sin to reach someone else who has been affected by the same illness.  She needs someone who she believes understands her, who can set an example she can follow.  I’ve given others easier tasks, and I’ve healed others from illnesses like this as well as worse and less severe, but I need you to do this for me.  I want Olivia and you’re how I can reach her.  You are my lifeline to her.”

She thought about it and considered the cost worthless compared to the gain.

“I understand that too.”  Jesus said.
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So here I sit, with my assignment in hand. Proud to be assigned a task that will please my Savior. I want to have a heart that will serve Him, NO MATTER what.

Today I will begin that journey.


4 comments:

  1. Wow I had to read it twice because of the tears. Before I read all of your post I thought God gives us things for different reasons and mostly to help others. I continued reading and praying for you my friend sorry you have had to go through all of this for so long. Even though you lean on Christ its hard and it gets us down. That story wow was incredible so incredible that it gives me serious hope for loved ones who want nothing to do with the Lord. If that gal hasn't shared get sorry with Olivia our Just been there to understand she world have died a bitter angry live. Instead she saw life in this women's Life she saw love she saw peace and Olivia had looked for that her while life in the wrong places.

    I realize the Longer I live in this world the more God wants me to share His love and hope through our stories. I know He gives us huge hearts for His People so that we can be bold and step out. I'm sorry this had been such a tough road for you but your right knowing makes it a little easier. I told you before God put me in your life for a reason and girlfriend if your having a hard day our Just need encouragement or a prayer I'm here for you.
    That story is amazing I want to print it out and remember why God had us in the journeys He gives us.
    Thanks for sharing your heart again. I pray people will be encouraged by you and your story. I sure am. Love you ♥

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  2. Gretchen, this is incredible. All these years and you finally have a name for these 2 issues. I know that's a double-edged sword, but I'm really thankful that you see that God has given you another platform in which to serve Him. You of all people can reach out and glorify Him thru your body! Literally. That's amazing. I'm praying for the peace that passes all understanding and if it's His will - for healing. Your life is in His hands.

    I adore you, dear one.

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  3. So THIS is why you've been on my mind all summer! Mom was just diagnosed with Sjogren's, I have Hashimoto's (I think you already knew that), and my daughter was just diagnosed with Hashi's. Mo's dad and my stepdad have myasthenia gravis, and his mom has rheumatoid arthritis... Basically, we ALL, save my son and husband, have autoimmune disease. I actually just shared some devo's about this over on Discover One Thing.... Probably easiest to seem them via the blog I'm starting back up, www.tarawiley.wordpress.com. All this to say.... I hear you, and I've been praying for you without even knowing what was going on. I love it when God does that! I've found the best help with an integrative and functional medicine MD... Her thorough approach has me feeling better than I have in 20 years! Chronic illness stinks, no way around it. Praying you get some real help and relief soon... And for sustaining grace as you rest in His love.

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  4. This was my first entry... http://discoveronething.wordpress.com/?s=July+26

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