Sunday, November 30, 2014

UPDATE

I've actually written this post a couple times...but I couldn't seem to find the right words to say what I wanted to say...

This post is designed to be an update for everyone who has been faithfully praying for me and my family during this rough time. I wish I could thank each of you who has been praying in person and tell you how much your prayers mean to me and my family. The Bible talks about prayers and faith being able to move mountains...well, I think at times getting in to see these doctors and making appointments is more difficult than moving mountains...but those mountains have been RUNNING away...for the latest mountain movement going on, check out my previous post about the appointment in WI.

Galatians 6:2 says, "Bear one another's burdens, and thereby fulfill the law of Christ." Thank you for coming alongside me and my family during this rough time and surrounding us with your prayers and support. It is still difficult for me to ask for prayer, but please know that we appreciate every prayer that has been offered on our behalf. There have been many times when I've been feeling really down, and I've gotten a text or call or email right when I needed it. THANK YOU!

I've tried to be consistent with this blog and update regularly as we get back from various doctor appointments and such, but hopefully this post will give a nice quick (or not so quick as the case may be...) overview of everything that's going on.

At the moment we are still in a waiting phase...unfortunately. It seems like most of this journey lately has been waiting...waiting to see if new medicines will work, waiting for test results, waiting for appointments... This past month I had 2 big appointments, one in MN and one in WI. Right now, we still do not have any answers...we are going back to MN in a little over a week for a follow-up appointment and to go over test results. We should be hearing back from the doctor in WI about the same time. So hopefully we will get some answers SOON!

What we do know is that I more than likely have some sort of systemic issue going on. What that is, we are still not sure. That is what all this most recent testings is about. Both doctors feel confident they have a good idea what may be going on, so we are doing a bunch of testing to either confirm, yes, I do have it, or no, we can rule this out.

We have been able to confirm that my autonomic nervous system does not work properly. This can manifest itself in multiple ways including problems regulating my blood pressure, heart rate, body temperature, blood flow, digestion, etc. Anything that is supposed to be "automatic" may not function correctly in my body...This is likely caused by one of the systemic issues that I am being tested for, so hopefully we will know more soon.

The biggest issues I've been dealing with lately have been stomach/intestine issues, allergic reactions, and black outs/passing out. I have gastroparesis which essentially means my stomach (and top part of my intestine, in my case) are partially paralyzed and do not work properly. Again, getting back to the autonomic dysfunction, my stomach is unable to handle normal digestion after eating. For those of you that knew I was in the hospital back in October, it was due to severe GP symptoms that I could not control on my own at home. I'm working with a specialist in PA trying to find the best way to treat these symptoms until we know the actual cause. The allergic reactions can range from as mild as itching, a rash, and a few hives to full anaphylaxis. I know some of my triggers but not all. These reactions can come on suddenly or appear slowly and progress to more serious. As we move toward a diagnosis, we are hoping to be able to better identify my triggers to I am able to avoid them and my emergency medications. The passing out is another result of my autonomic nervous system not working properly and my body being unable to regulate my heart rate and blood pressure normally. Again, the hope is that as we figure out the underlying cause of these issues, we can treat that as opposed to continuing to treat the symptoms.

So if you haven't caught the underlying theme here, we are waiting...still...but more hopefully now than in the past few months. We should be hearing back with some of the test results in the next few weeks and will be traveling back to MN in a little over a week for a follow-up.

Please continue praying! While we are (hopefully) making progress, there are still a lot of unknowns. Specifically, we are asking for prayer regarding these tests. Both doctors feels confident that we are moving in the right direction for diagnosis, but we need lab confirmation. PLEASE BE PRAYING FOR POSITIVE TEST RESULTS. We are desperate for some closure and also to be able to treat the underlying issues effectively instead of just attempting to manage symptoms.

I hope this post wasn't too rambling or confusing, and I hope that it is encouraging for you to know how your prayers are being answered and are sustaining me and my family through this rough season. We are so thankful for your support and hopefully will be reaching some sort of resolution in the next few weeks. Stay tuned!

1 comment:

  1. Thanks for sharing the update Kylene! I will be praying for you and that you get some answers.

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