November 20, 2011

November 20, 2011

Hello my dear friends! Things have been fairly quiet lately... Well, as quiet as things ever are around here, I guess! We are still in the "sit back and wait" phase of my medical testing, but a few results have begun trickling in. My endoscopy biopsies from last month tested positive for enterovirus. And what does this mean? I have no idea! There is a wide variety of enteroviruses, so I'm not even sure what to Google! But if ever I get any details from my doctors regarding this virus, you all will be the first to know. Enteroviruses can cause a lot of problems for people if the condition has been chronic. But I am not even certain as to whether or not this finding will affect my treatment plan, or if it is just another name to throw into the myriad of facets of my illness, but I suppose in time we will see if it proves to be of much importance. For now, though, I think we may have some slides from previous endoscopy biopsies sent to the special lab that runs this test to determine if the virus has been a chronic issue, or if it has been more recently acquired. Also, this past week we had our conference call with my hematologist/oncologist from the HLH clinic in Cincinnati. Genetic testing takes approximately an eternity to be completed, but the doctor had the results of some of my rheumatological tests. So far no major red flags have popped up. Since they don't suppose my HLH is secondary, I don't think they expected to see too much from a rheumatological angle. But such a striking lack of autoimmune activity is rather uncommon in a case like mine. The only irregularity to show up has been an anti-platelet marker, which the doctor said is a strange marker to be found on its own with no other autoimmune signs. They seem to be scratching their heads a bit... I tend to evoke that reaction fairly often! So as I said, we are sitting back and waiting. I am just praying that the genetic testing being performed by both my HLH docs and my mito doc will help us to pinpoint just what is triggering such a mess! In the meantime, I've been keeping myself busy! Alice Eloise and I have been doing a lot of training, and she is doing very well learning her commands. Mom and I actually took her to an animal behaviorist last week. We have very few puppy issues, but my poor little girl has such terrible car sickness, and because of this she has anxiety any time she needs to travel. We have tried everything we could think of to remedy the situation, but have had no luck. But per the advice of the behaviorist, I have been playing with Alice in the garage to make it a pleasant place, and we are gradually working our way toward the car (with a bit of incentive from Alice's friend Colby Jack!). It will definitely take more work, but I think she is making progress! And I am sure many of you will not be surprised to hear that I am in the process of transforming my bedroom into my winter wonderland! In a week or so my room will be looking lovely and cheery at it's Christmasy best! Mom, Tim, and I took Alice and Lulu to have their picture taken with Santa, too. I posted both of their pictures in the photos section on my CaringBridge. All things Christmas just plain make me smile! 20130326-102006.jpg But I am excited to celebrate Thanksgiving this week as well! I am very much looking forward to spending some quality time with my big sister Krista, and with Tim, my parents, and the Doodles too, of course! And as for Thanksgiving dinner? Hm, I am just going to hope that I will be well enough to eat some cranberries next year! Although this past year has been my most difficult from a medical standpoint, I believe I am about as content as I can ever remember being. I am coming to realize that God blesses each of us in different ways. While I certainly hope that someday I will be healed and be able to do the things I would like, I must remember that God has the best plan for me! I am in just the place God means for me to be in right now, and I should do all that I can to submit to His perfect will. And I have so very much to be thankful for! I have such loving and supportive family and friends. Truly I am a blessed girl, indeed! Happy Thanksgiving, everyone!

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