Last night after dinner I got an email from my neurologist. Negative. It actually said this: "Normal results with no evidence of multiple sclerosis on this test."
It was what I expected, but I didn't expect to sob like a baby. I dropped my head into my hands and cried in surprise: surprise I was crying, surprise that it was really negative, surprise that I had all that crying inside me and I didn't know it.
I've been thinking about where to go from here. It was December 2013 when I first asked my eye doctor about my double vision- how things would just suddenly separate and sometimes go back together, sometimes not. "It's nothing." he told me- but six months later I was not convinced. In three trips to the ophthalmologist last summer they couldn't figure out where the double vision was coming from, why it was happening. That, coupled with the weakness in my arms and hands, as well as the more than normal fatigue didn't make any sense. It was July of last year when they told me I needed to see a neurologist, then I had to wait five months for an appointment. Then wait three more months for a follow up. Then another six weeks for the spinal tap. I suppose I could have cried from after dinner into today for all the waiting and wondering I've been doing.
I am so grateful for all the positive things that have come from possible scary diagnosis situations: in December 2014 when I had the MRI there were no brain tumors or bleeds, or cancer. When the EMG and blood work came back negative for Myasthenia Gravis. And now- another good news, no MS! but it still leaves me wondering. Is it just stress? Am I internalizing things that much? What the fuck is wrong?
Part of me says to stop trying to define it. To just eat right, do yoga, walk, and be patient. To embrace the good that has come from this. (The possibility of being in a wheelchair makes you really appreciate your two feet on the ground just walking.) Another part of me wants answers. To be able to treat it, to fix it. I'd be willing to do what it took if I only knew what it was. Neither part really gets what they want. So it's just not time to move yet.
Being sober in this situation has helped me zero in on the few simple things I need to feel most my self. It has made me even more grateful for my sobriety- that I was here to handle a tough situation and not getting drunk to avoid it. I try to not get pissed about being sober and now things are wrong- I know my sobriety gives me the grace to be a person about it rather than being a drinking mess about it. They call booze "liquid courage" but I'd call it "liquid fear". Drinking never made me brave enough to face my life at all, much less a long drawn out mystery like this. Being sober has given me the ability to face this eyes open instead of closed in anxiety and afraid. It has given me the courage to look straight at what's coming and not be scared because I know I am capable, trustworthy, and loved. I can handle the truth.
I am so grateful for all the support y'all have given me. It has helped so much to read your kind and thoughtful comments, to get emails that say supportive and funny things. I'm just going to go on, business as unusual from here: being sober, taking good care of myself, learning and practicing living this lovely life with a courageous open heart. I am filled with gratitude and humbled by the grace of it all.
Wow, good news! You don't know what it is, but at least you know what it's not. You have all my admiration for handling this sober. That is truly amazing!
ReplyDeleteThank you! I find that handling things sober is so much easier. Hangovers are brutal when things are going sideways.
DeleteSo happy for you Amy! :) The human body is an amazing and mysterious thing and you may never know what caused the symptoms you were getting. Sober strength has seen you through and that is so inspiring to see xx
ReplyDeleteThank you! :) The body is a big ol' mystery. One that I'm not going to solve any time soon I guess. I'm OK with that. xxxooo
DeleteYipee!! KT
ReplyDeleteYippeeeeeeee!!!!!
DeleteI am so happy for you!!! Maybe your neck is our of whack! Maybe a visit to the chiropractor will help.
ReplyDeleteLol, if it were only as easy as a wacky neck :)
DeleteAmy I'm so happy for you! And relieved. This thing you have sounds tricky to define, but you plan for healthy living sounds like a good one, and it's really fantastic that you don't have all the things you now know you don't have! (How's that for an awful sentence?!) Filled with grace is a fine thing. Take care.
ReplyDeleteThanks :) I'm relieved too. I was thinking about how I lived with being hungover for years and years, and so I can deal with whatever comes along, when it comes along.
DeleteAmy so glad to hear this good news. What a relief. Please know that we are out here caring about you. ~Denise
ReplyDeleteThanks so much! :)
Deleteso very glad to hear your good news. I know that feeling of relief you allow yourself to feel that includes some of the worry you weren't permitting yourself to experience about if it had been a different result..
ReplyDeletevery best wishes to you, handling whatever it is damn sober. you TOTALLY rock! Prim xx
Thank you thank you! WE totally rock!!! :)
DeleteHI Amy, I am so happy for you. That must be a huge relief! Hopefully you go the bottom of what it is. In the meantime, take care of yourself. A x
ReplyDeleteThanks for thinking of me! xo
DeleteHi Amy,
ReplyDeleteI have been reading your blog for some time and feel we are both similar in our sobriety. As I read about your MS non - diagnosis, I recalled a discussion I had with a friend re: Lyme Disease. Living in Massachusetts it is a very real threat to our health and often is never diagnosed properly or timely. Please read the attached and see if there is anything here that may help you!
http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/?_r=0
I've thought of this too- Lyme is not as prevalent in the Southeast, but still a possibility. Autoimmune stuff is tricky at best. Thanks for the article! :) xo
DeleteI'm sobbing too, so there! I was almost afraid to hit on the link to your blog when I saw the title, so I know how afraid you must have been to open that envelope. But you're fearless girl. No, that's wrong. All of us have fear, some march on through it, and that's you. You're Courageful! Congratulations, my Courageful Friend. March on!
ReplyDeleteCourageful! I love your new made up word. xxxooo
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ReplyDelete