It was really difficult to enjoy my lunch as my husband talked rapidly with such a sense of relief in his voice. We had just left my neurologist’s office where we were expecting to receive results from my brain and spinal MRIs. She said, “You’re fine. It’s all your thyroid”. I was stunned. I was told by the same neuro last week that it was a motor neuron problem. I couldn’t say much. But, it was enough for my husband. That’s all he needed to hear. You see, his biggest fear is that I have ALS. What he doesn’t realize is that there are many other neurological diseases that are equally or near equally scary. Or maybe he does realize this but ALS is his big worry. It’s the whole idea of he and our son watching me rapidly die in front of their eyes.
So as we lunched, he goes on about how now we can again look at new houses that have second stories without a worry of installing an elevator. I just fake smiled in that really bad fake smile way where my lips are rounded instead of half-mooned, my teeth are clenched, and I’m showing too much gum. It’s impossible for me to smile. No matter what the neurologist said, I am still walking with a limp. I still have severe left-sided weakness that limits my mobility to the point that I can’t even walk around the block. And, I can’t help but question the cause is my hypothyroidism or the thyroid goiter/nodule. It just doesn’t make sense. Why would I have an abnormal EMG?
My husband shared his joy for my lack of an ALS diagnosis by calling his friends and family of origin telling them “She’s fine!”. I finally chimed in from the background, “But I still am having trouble walking and I do have a tumor on my thyroid and I still don’t know what’s really wrong.” I could hear my mother-in-law say to my husband, “She can’t focus on the negative. She needs to be positive. This is great news.”
Great news?
Great news for my husband whose bggest fear (ALS) was removed by a smug neurologist who passed the buck. The fact is, she didn’t say I don’t have ALS. I don’t think I do, don’t get me wrong, but we didn’t win a prize here.
Next thing you know, I’m hearing over and over again “You’re so negative!” “You’re just a pessimist! “What’s wrong with you??”
Well, I was still absorbing the events of the day so I couldn’t repsond as well as I would have liked, so I will do so now.
Negative? Really? That’s what you think – that I’m negative? I wake up every day convinced that it’s all going to be better. That my leg problem will go away. That I can forget this litle episode ever happened. How’s that negativity for you?
Pessimistic? Really? Do you know that to everyone who knows me in regular life (those not privy to the details of my health problems) think I am the most optimistic person they know?
What’s wrong with me? Damned if I know. I have doctors who guess at what I have. Look, I’m in a sucky situation. I can hardly walk. There’s not much of a brightside here right now for me. It sucks. If I want to be grumpy about it, will you let me be grumpy? I have to have a joyous exterior all day at work and all my moments with my son. If I want to pout, scream, cry, whatever – I’m going to do it. Why? Because I do have a positive outlook and this medical stuff is f-ing it up.
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Yeah, it’s crazy. When people aren’t going through what you’re going through and experiencing the non-stop symptoms… it’s easy for them to be positive and only see the bright side. However, when you can feel that there’s something wrong… when you know something is wrong… simply ruling one more thing out, although beneficial, isn’t a “great news”. I remember my doctor putting a note on some lab test results saying “Great news… everything’s normal!” And I thought to myself, “Yeah, I’m glad they’re normal… but I don’t know that it’s great news. I’m still exactly where I was yesterday, health-wise. Just because a test came back negative doesn’t mean I’m fine now.”
Hopefully things have changed for you as far as your support system, since this time.