What does that even mean?

So, as many of you know, I have been having some health challenges these last several months.  I’ve been working with several different doctors to figure out what is wrong with me.  I’ve been tested for almost everything under the sun.  I’m surprised I still have blood in my veins.

Finally, in November, I had a blood test that came back and started us off in a different direction.  I tested for positive for autoimmune disease (ANA test), and then was tested for most of the major auto-immune diseases.  I was tested for Lupus, Sjogren’s, Crohn’s, and Scleroderma…as well as many other tests to check for issues.

I was really praying against Crohn’s disease, but it seemed to fit a lot of my symptoms, as most of my symptoms are digestive.  I was relieved when the tests came back and showed that I do not have Crohn’s disease.

I do, however, have Sclroderma (AKA Systemic Sclerosis).  There are a few different types of scleroderma and most of them affect the skin.  I have not had any skin issues whatsoever.  While I’m thankful for that, I do have to undergo some other (expensive) testing in the middle of January to check out my digestive tract.  I know that’s going to be tons of fun, so I appreciate all of your prayers as that date approaches.  I am thankful, though, that those tests are available.

Right now, I’m hoping against hope that the tests reveal something a little more simplistic than sclerosis of my intestines.  I never thought that I would say, “I hope I only need to get my gallbladder removed or something…”  My hope would be that I can be cured of the symptoms I’ve been experiencing and that the disease would just be a dormant thing and I would be considered to be in remission.  See, the thing is, like all auto-immune diseases, there is no cure for Systemic Sclerosis.  There really isn’t anything I can do about it except treat symptoms.  If it is causing me to have heartburn, I would have to take meds for heartburn.  If it attacks my kidneys, then we have a bigger problem.  If it attacks my heart…well…let’s just plan on it not going there, right?

I’m already on some medications to manage the joint pain and stiffness, and it is working really well.  I’m thankful for that.  I just started another medication to help with my digestive system until we can really figure out what is causing the problems.

So, why am I telling you all of this?  Why am I revealing it to the world?  I don’t know why.  Maybe I just need to get it off my chest.  Maybe it will give me an opportunity to say that I don’t want everyone privately contacting me with a miracle cure from Mexico or something.  I don’t want to read page after page after page of how this simple change or that simple change is going to cure me.  I believe, in my heart of hearts, that my only hope for a CURE is through God.  Everything else is just a waste of my  time.

I don’t say this in anger or sadness.  I’m not trying to be negative or hopeless.  I’m being realistic.  Without a miracle, I will be living with this disease until the day that I die.  That’s just a fact.  Do I think certain changes might help manage my symptoms?  Probably.  And maybe I will look into those things on my own when I decide I’m ready to read the long lists of foods and drinks I supposedly can and cannot have.  But, to be honest, it is a bit overwhelming to read it all right now.

What do I want from all of you?  Prayers.  Prayers and encouragement and support.  Our family has been turned upside-down during the last five months.  Prayers for my husband, my children, my family and friends, and, of course, my doctors would be greatly appreciated.  Prayers that this disease doesn’t find its way into my heart, lungs, kidneys, or other major organs would be also be helpful.

In all truthfulness, this all seems a bit surreal.  I had other plans for my life…and they didn’t include chronic illness.  I find hope, though, in the many who have gone before me and have lived happy, full, fruitful lives.  I’m thankful for the motivation that my children and my faith provide me.  I’m thankful for the patience of my husband.  I’m thankful that his mother taught him how to be kind, loving, and gentle to those with chronic illness.  Had he not grown up with a mother with chronic illness, he might say stupid things like, “Isn’t there a pill for that?” or “Mind over matter, Kristin…it’s all in your head, ” or “Just don’t think about it so much.”  Instead, he asks me if I need a hug.  He asks me if I need to cry.  He asks me what I need from him and he is willing to give whatever he can.  And I am so grateful for that. I’m thankful for health insurance…even though this is sill costing us more than we can handle right now. It could be so much more.

So, I thank you in advance for all of your prayers and encouragement.  They mean more to me than I could express.


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