November 14, 2010

Catching Up

My baby is now 2 years old. How is that possible? Wasn't it just a few months ago I was in the hospital for 5 weeks trying to keep him growing safely inside me? What a blessing it is that he is healthy and growing up. All those fears and tears seem so long ago at times. Many thanks to all of you who prayed for this child during his pregnancy!

Catching up... Wow, it has been so long since I have blogged on a regular basis. Not that I am not writing blog posts in my head all the time! I wish I could just think them and they would appear! My life has radically changed in the last two years. Not just having another baby and all that this entails, but my overall health has declined. So many doctors appointments, specialists, tests, blood work, a surgical muscle biopsy, medication trials, MRI's, EKG's and ECHO's. Add to that an overnight at the hospital about a month ago when I couldn't stand up without my heart rate going from normal to 145 bpm and then I would faint.

What is wrong with me? That, dear readers, is the million dollar question. I was blessed with two great specialist this summer: a cardiologist and a neurologist. We think we have finally figured out, with medication, how to keep my current heart problems under control. Diagnosis is POTS. But the neurological stuff is still a work in progress. What we know is that I have a neuromuscular disease. What we don't know is which one. The "episode's" I get seem a lot like MS, but my brain MRI was normal. I have a lot of the symptoms of an adult onset Muscular Dystrophy. But, my neurologist doesn't have enough information yet to be able to truly assign that as my "root" disease either. While we continue to search for a diagnosis, we are also pursing the right combination of medications and supplements to improve quality of life.

"You look fine!" (Please watch this short video) This is something I hear a lot. Of course, on the really bad days no one sees me... I'm in bed for days at a time. Most days I am in a lot of pain. Lately, it is my arms, hands, left hip and back. My hands are weak and I can't do much with them anymore (like cutting up things for meals or opening jars). Typing can cause pain if I don't already have some pain meds in me. Some days I have extreme fatigue along with the pain. And some days my brain doesn't work right: I can't think of the words I need to speak, or things are really foggy, etc. I don't sleep well as pain wakes me up a lot.

This is certainly a new journey for me, my husband and our family. Each day can be so different for me. It is hard to make plans because I don't know how I will feel. I fight discouragement and during really bad days, despair. And yet, my hope is in the Lord! He is my Strong Tower! He is my Help in this troubled time!

I never like to talk about my health or what is going on. I have tried to keep it kind of under the radar, hoping we would find some answers, some treatments and be done with this journey sooner than later. I can't deny any longer what our current reality is. My journey of motherhood, homeschooling and even being a wife has changed. I am having to find new ways to make things "work" for us. I am having to "let go" of many things I used to do and still want to do. I am learning a new level of contentment where God has me right now.

No pity party here, friends! Let us all encourage one another to love and good works whatever our circumstances are! I hope to be able to post more about how I/we are finding new ways to do things, large family and all, in sickness and in health. Maybe this will also encourage others in their daily struggles.


Meg said...

Thank you for posting! Please know that as I pray for you daily, I applaud your courage and tenacity in fighting to find answers.

BrendaS said...

I'm just reading your blog from a list I marked ages ago and read of your medical struggles. Have you ever read this blog... Her story sounds so similar to yours...and she has just been recently re-diagnosed with Lyme Disease. Have you considered that, or pushed to be tested for it? Best wishes, and may the Lord continue to strengthen you.

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