A month ago was my Sjogrens study and when I left the study (in really poor shape from a lip biopsy and a long morning) the nurse told me it would be about a month until I received the results. The 7th was a month so this past week Ryan asked me to get in touch with the foundation because we need the results in order to start the process of treatments. So I texted the nurse this Friday, the 13th. Big mistake with Ryan still out of town (He was gone the entire week to Vegas for a conference.) Now we had a pretty good suspicion that I have Sjogrens, if nothing else just because of how bad my eyes are, but I am the type of person that I would MUCH rather go through life blindly then know what's going on when it comes to myself. The nurse texted back that out of 6 tests they conducted, I had positive results on all 6. As a nurse she couldn't diagnose me and the "confirmation meeting," where the docs sit down and go over the results from all the study participants. hasn't happened yet but the point is, I now know the results. To hear the medical word just broke.me.down.completely.This weekend was tough.
Now in addition to pending specialists and treatments, I have downloaded 2 books regarding Sjogrens onto my Nook to dive into and I am looking into a support group because, as the nurse said, people who don't suffer from Sjogrens don't understand how bad it is. With no cure, we just have to pray and seek experts who can help us get this all under control and able for us to maintain it on a daily, hourly basis..
It's laughable to see me cry because I can't produce tears, so picture an ugly face cry with no tears. I think it's pathetic but my sweet husband doesn't laugh. I am thankful for him, so much. My mom is equally awesome, sitting up with me last night as I ramble on and on and on. And prayers and shoulders from friends, gosh, I do feel blessed.
To bring this post up, because it desperately needs it, a picture of my 4 favorite little people can perk me up and certainly a drab post! A peek from our day at the zoo today. I just love them.
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Brandon, our map guy, Blaine, who jumped all around the zoo and broke his glasses hours before leaving, Gracelyn, our big girl who insisted on walking most of the day, and Britton, who wore his coat just like that the entire time and it was far from cold.
2 comments:
Praying for you, dear friend, as always. I hope the treatments will bring you some relief from the symptoms.
And, I love the photo of those precious babies!!! They are the cutest!
I am so sorry to hear about your condition...I hope they find a cure soon and in the meantime something to give you some relief from your dry eyes.
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