I will start with telling you my latest medical news: Last week I had a blood test done for a condition called "Sjogren's Syndrome" because I am showing all of the symptoms of dry skin, eyes, mouth and fatigue (you can learn more at http://www.sjogrens.org/syndrome/). I was actually disappointed to learn that the test came back negative. It may not make sense, but considering that I have the symptoms anyway, it would have been comforting to be diagnosed because then there is one less unknown. Of course I may just have to accept that this is just how my body is now and it may never have a "name" and that is okay.
Yesterday I had my long-awaited allergy test without any complications. The test was done not so much to find out if I have allergies, we knew that already, but to find out specifically what I am allergic to. With this information a special serum will be made up into "allergy shots" made just for me which we hope will greatly improve my quality of life. You may not have known that I was already home-bound this spring because my pollen allergies were so bad.
Then today I went to my also long-awaited eye doctor follow-up appointment. I was not surprised when the Opthamologist told me that the Restasis medicated eye drops were not working and that is okay with me anyway because they burned when I put them in my eyes. I was pleased when she immediately suggested trying a new treatment with these "scleral lenses" because after much research of my own, these seem like the best option. And it was good to find out that they can fit me for theses lenses there at Emory University, instead of having to fly several times to Boston like I originally thought. I believe this is great news because I have heard other SJS survivors claim that they get "their life back" and their eyes are no longer in pain after getting the scleral lenses. God-willing the lenses will do the same for me! I am grateful because I am going for my first lens fitting tomorrow morning.
In addition, she (Dr. Song) was very pleasant and more understanding of my situation than most doctors I have encountered, which was relieving and comforting because it helped me feel more at ease and confirmed that I am not crazy. It is sad that many doctors brush me off or disregard my concerns, for what reason I do not know, but it
makes me feel ashamed or like I am blowing things out of proportion when in my heart I know I am not. She is leaving Emory to go bless Veterans at a hospital in Asheville, NC next month, but she has referred me to an opthamologist somewhere else who she holds in high regard, so I am hopeful about that.
Last, the doctor told me that she would normally suggest plugging up my lower tear ducts to help my situation. The lower ducts are actually where your tears drain and plugging them up helps keep the few tears that do come from the upper ducts to stick around longer. BUT the prayers are working and my lower tear ducts were scarring up and therefore plugging up themselves! Isn't it weird and wonderful how something that otherwise would be a bad thing can become something so good? So instead of having to go through surgery and putting some foreign object in my eyes, it is God's hand that is helping my own body "heal"!
Now on to a response to an email I received from a woman who sent out a mass email prayer request that reached people ALL OVER THE WORLD. Yesterday I received a forwarded response from a woman in Africa who has AIDS and leads a women's AIDS support group. Here is a snippet from her email:
We continue to pray for her total recovery and we trust that her tear ducts start functioning well again.Yesterdy it was our independence day and my prayer group and I went to our Diocesan prayer mountain.They fasted for Katie's total recovery I can not personally fast because am diabetic but I also forego something to plead for Katie's condition.
When I first read Beth's email my brain and heart became twisted up into a knot of almost sheer lack of understanding. It was and is still nearly incomprehensible to me that these women, who are complete strangers and face dire straits of their own, took the time and energy to go to a mountain and fast with me in their hearts and prayers. It is simply ASTOUNDING to me.
It made me feel so moved and so small at the same time. This, in combination with recently listening to "Mere Christianity" on audiobook led me to write the following diary entry today. I want to share this with you as a matter of testimony to God's power and to offer a reciprocal embrace in His Love.
...I am still facing some difficult and lasting after-effects of SJS/TEN. All-together the situation has been traumatic and life-changing. But I cannot just think of the bad things like scars and fatigue because there are positive facts and that is what I am working to focus on in life:
1) I did not die - I am alive! Other than the obvious reason for my personal gratitude, I am thankful for the sake of my loved ones. I shudder to think of what kind of grief Jon would have gone through, especially considering the previous loss of his Mother. And my family also would have had to deal with losing me at a young age in such a drastic and truly gruesome way. During the worst of it my physical
deterioration would have certainly prevented an open-casket funeral.
2) Jon and I have a closer and deeper bond. Like many people who endure hardship together, our love and commitment reaches to a greater extent than before. To experience such devotion expressed towards YOU is something that moves and changes you in a way that can hardly be explained with words. My level of respect for Jon, which I am sad and ashamed to admit was poor before, has risen greatly and will not be called into question again if I can help it.
3) GOD. Before this happened to me the phrase, "God is good" was just a saying to me. Now I KNOW it is TRUE. God IS good in the truest, deepest and most amazing sense. My self-inflicted disconnect with God before SJS/TEN has lost it's strength. I used to be dismayed that my occasional moments "with" God didn't last. But now I am mindful that I MUST turn to God again and again with each new breath.
I was blessed by prayer from people all over the world. I am humbled, strengthened and positively challenged by this. I was doubtful of the power of my little prayers, but now I see that doubt was less in me and more in God and that was wrong. God does not need perfect prayers to do His perfect work. In fact, I am not sure he needs my prayers at all to signal to Him that someone is in need of His care. He is All-Knowing already without my help! But instead of discouraging me, this fact ENCOURAGES me to pray as a matter of showing my faith in His work and a willingness to accept His will.
My personal truth is that if it had been His will for me die, I think I would have actually been quite pleased. I like to think that though my faith-growth at that point (and still) was meager, I would have been accepted into His arms in heaven. And while causing grief to those still on earth, I would personally have been very happy. It is HEAVEN, after all!
But I am not really surprised or disappointed that I was not gathered up by angels to go on to my "immortal life." I am confident that there is still much for me to do on earth and I feel that my continued life (or lack of death) confirms this. And while I am frustrated with my momentary human confinement and physical limitations, I try to not be bitter. The frightening and mutually comforting thing is that this not my path to Him but His path for me.
I feel, and hope that it is true, that I am surrendering more and more of my "self" to Him and as a result I expect to exponentially improve my life and who I am. I use the word "expect" not like a parent expects a child to obey, but rather in the hopeful sense, like hoping the cake tastes as good as it looks. And anyway my expectation comes not for myself but from a desire to please God. So, really, it comes from God for God. Just like the electrical cord conducts the power from the wall socket to the light the lamp, I just have to open myself up to become a good conductor of His energy/love/goodness/will.
I imagine all of this will take a lifetime of practice, but then that's the point I suppose. And that is GREAT, as far as I'm concerned.
I pray to my/our Dear and All-powerful God with love, respect and with
a goal of surrendering my "Self" to Your will. I am grateful for the
life and guidance You have given to me by way of wonderful, loving and
strong people around me, as well as the love and strength I have
within me. Please accept my efforts to learn that while I may not have
the power to carry on, You DO. I ask for and am grateful for Your
never-ending Love, Forgiveness and Grace in my life as well the life
of each and every person on earth. I am in awe and wish to become
nothing but a reflection of You. In Jesus' name I pray - Amen
With that I hope this post finds you well.
In loving faith,
Kate
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