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Delayed Medical Update

August 6, 2015

Some of you have waited for more than a week and I’ve decided I’m ready to let you all know what my doctor said.

My spine MRI’s did not reveal any lesions that would confirm suspicions of MS. There’s still a decent chance that I have MS, but it would now be much more difficult to diagnose. Before you get all excited and try to encourage me with “Hey! You might not have MS!” I will just remind you that I am still living with the same quality of life and same symptoms as I would have WITH the diagnosis. So… it’s actually not encouraging… at all.

Giving honest answers to my questions and preparing me for the possible future, my doctor told me that there is a really good chance that we will never figure out what is wrong with me. That I likely belong to the small percentage of people that have rare disorders/diseases that could be unimaginably expensive to finally nail down through a long sequence of diagnostic tests.

Some of you may have been expecting to hear that I was diagnosed with a terrifying and horrible disease. This update, relative to those expectations, might seem like good news. I assure you, it is NOT.

For years, my and Ben’s worst nightmare has been that we would never figure out what is wrong with me. Last Wednesday, my doctor confirmed our worst fears and told us that may be my future. This also negates the most exciting thing about finding abnormal spots in my brain–the idea that being on the right track meant we were going to find answers.

No diagnosis means no real treatment plan. It means no cure. No tangible hope for recovery (outside of a miracle). It means being scared out of my mind every time a startling new symptom pops up or worsens and never being able to understand what is happening with my body. It means my body will continue to be unpredictable, making it difficult to make commitments or be a productive member of society. It means hundreds more recommendations from people who “know someone who…” and countless more diagnoses from people with absolutely no medical training or knowledge.

I beg you not to try to comfort me with empty “It could be worse,” and “At least…” encouragements. I’m a little too devestated to just brush those off right now. Please also refrain, at this time, from sharing any miracle cures, diets, or explanations of why I am sick.

Are you afraid to say anything now?

You can tell me you love me, that you’re praying for me, that you are praying for healing, that this REALLY sucks, or maybe even try to convince me that I am not completely failing at life. Those things actually are encouraging.

One of the worst parts of chronic illness are all of the things people say with good intentions that just deepen the wounds or create new scars. That’s the biggest reason I have been hesitant to share… because I’ve been hurting a bit too much to take all of that. (I will elaborate, in a future post, about the hazards of unsolicited advice and why we all need to work harder to stop giving it.)

Thank you so much to all of the people who have shown love and support and have prayed for me in these last few years. Some of you are pretty awesome at the empathy thing. In contrast to the natural human “Ima fix you” response, empathy is beautiful and astonishing.

I still appreciate, in a way, all of the things said with good intentions that have been more damaging than helpful, over the years.

There is still some hope. If anyone is going to have insight into what is wrong with me, it’s surely the neurologist. Please pray that I get an amazing neurologist with whom I will have an amazing relationship. The idea of walking though the rest of this with a different doctor from the gem we found in Dr. Vu is frightening.

Thank you again for your prayers. Your patience. Your understanding.

I’m a bit of a mess. With God’s help, though, I’m going to keep on going. Day by day…

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4 comments

  1. Well, it does suck. Praying for you always. Hugs. cate b


  2. my dear friend, I am so sorry.


  3. Much love to you. If you ever want to see a dr in Philadelphia are, our doors are open.


  4. Rumor has it that Wegman’s wants out because of the Pfizer acquisition of Wyeth. (The Wyeth facility may close). Does anyone know anything about this? Click http://tu2s.in/searchll100830



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