Thursday, September 24, 2015

The Word I Didn't Expect

Misdiagnosed.


That isn't the word you are expecting or possibly even wanting to hear when you are battling health issues for seven months. 

To learn that you pursued expensive treatments, suffered with extreme side effects, and wasted precious time with your family for something you don't even have.

You finally find a new specialist who you hope will be able to solve the mystery of why you're not actually getting better, only to find out that he's probably not going to be the one to treat you because what you have isn't what was diagnosed. To discover you haven't even dialed down the right kind of specialist.

Starting from scratch....again


I was referred to a second infectious disease doctor and my appointment was on Tuesday. I've been having more strange symptoms after being diagnosed with EBV and then adrenal crisis. I had so much hope in this doctor. Nine years ago, he treated my mom for Rocky Mountain Spotted Fever and actually saved her life. She had a severe case that landed her in the ICU, hooked up to a ventilator, and we were told to prepare ourselves to lose her. But this man was on the team of doctors that saved her.

I just knew he was going to be the one that turned my health issues around. I just had no idea it would be so literal.

My dad went with me and we talked to this doctor for quite a while. He asked questions that no one else had. He dug into my history (weight loss, fitness, family, surgeries) and tried to connect the dots. Then he told me something I wasn't expecting: I do not have chronic active Epstein Barr virus. He said my symptoms do not lead him to believe this is even viral at all and he probably won't be the one to treat me.

So we start from scratch. He is actually still trying to help me figure things out so I can take the next step. We did all new blood work and we are looking at everything.

I'm left waiting now. Waiting for more test results. While I'm waiting, I am growing more and more frustrated. I have spent thousands of dollars on things I did not need. I ended up in the emergency room in the worst pain of my life after the treatment was given to me incorrectly. I scared my husband, our kids, and my family. I've missed work. I've missed Zumba®. I was miserable on our vacation.

Pursuing something that did not exist for me. 

I don't even know how to process this right now. I am diving into coaching while trying to help other ladies not feel hopeless, jumping into Zumba® to soothe these raging feelings inside in a healthy way, praying that God will place the right people in my path during this time, spending time with my family trying to make up for the things I lost. I am grabbing at any ounce of joy I can find to keep myself from stomping my feet and pitching a fit.

How can we be so wrong for seven whole months? Why is my body betraying me so much? What if it's something simple that could have been fixed months ago? What if it's not simple at all?

Deep inside, I know God is teaching me something. I know He is guiding me through this. I trust that He will provide. I know I can use this whole jumbled up story to help others, but I'm not quite there yet. If you pray, will you be one of my prayer warriors now?

8 comments:

  1. Praying for answers and for complete healing! God will use all of this for His good!

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  2. Wendy, I know the frustration of doctors. Twenty years ago I started on a journey that about drove us all crazy. I had so many diagnoses and so much wasted medicines that I did not need. You just trust that Jesus knows what he is doing and go on and went you can't go you take time for yourself, with no guilty feelings. If you ever need to talk to someone else who has walked this road you know where I am at on Sunday's and you can call me any time and I will talk to you. Praying for answers and peace in the waiting

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  3. I am so sorry that happened. Being misdiagnosed is really hard after having put your faith in a drs orders. My husband was misdiagnosed with a stroke which we later found out was a brain tumor that was almost immediately operated on and we had waited 4.5 months before seeking that second opinion that saved his life. Second opinions are our new normal when seeking info on something costly or health related. Praying for strength and guidance to the right drs.

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  4. Praying for healing, Wendy! I'm so sorry you are going through this. You are an inspiration to so many. Maybe this, too, will one day be another way you reach out and help others. All in God's time. For now, have those feelings for a few days, but then get back there and fight!

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  5. Trust in God, as you said. Prayers are being said. My heart goes out to you and your entire family.

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  6. You are brave! You are an inspiration! Your family, their love and your shared faith will guide you through this. I'm praying for your swift recovery on every level Wendy!!

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  7. Have you been tested for Lyme disease?

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  8. I felt compelled to comment. I have been reading along here for a long time and have been inspired by your journey to healthy living. I am so sorry to hear of this happening to you. I am so nervous with doctors I avoid them if possible! I will pray for you tonight and every night you come to mind. May you be blessed with a good night's sleep and a good day tomorrow.------Beth

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