Friday, May 13, 2016

La La La...I'm NOT Listening...


I have decided I do not want this diagnosis. I think I like the "it's just stress" answer better. "You are getting older." "Early menopause." "Depression." Even "It happens" is better than what I've been told. Mind you, what I've been told is NOT -by a long stretch- the worst thing I could have been told. There are MANY other things that are WAY worse than this. And, as it stands, what I do know is looking better every day. (Well...if I'm being completely honest, that's mainly because I don't have all the information and I'm choosing what I am focusing on at this point.)

I found a blog written by a gal who was diagnosed with AE (autoimmune encephalopathy) who is an ultra runner!! She was training for a 100 miler and had an acute onset of symptoms in March. She got treatment (I'm not sure exactly what treatment she had) and she is back to running 75-100 miles a week. I think she has a considerably stronger will than I do. I think she's able to focus only on the positive whereas I've been getting caught up in the "what-ifs" a little too much. I think she's better at ignoring some physical/mental symptoms and push through much better than I have.

Early on when I started to think there was a problem I ignored it and decided it was stress or training or diet or sleep or hormones. It's like seeing one ant on your floor. You just kill it and you move on. You decide it's an anomaly. Unless you are anxiety ridden, then you might take drastic measures, but for the general population you don't freak out.

But in December I knew something was really wrong. I just couldn't think. I was struggling with word finding. That's really funny until it's happening several times every day, then it's annoying at best, alarming at worst. But I still attributed it to stress, diet, hormones, training or lack thereof, and poor sleep (related to all those other things). I figured if I could just get those things in line, starting with my diet, it would all come back to normal. Thankfully Dwayne pushed me to make the appointment.

By the end of January I was worried. I had cleaned up my diet (for the most part) and although I did feel somewhat better some of the time, I was having more symptoms (mainly dizziness). It was Super Bowl Sunday that I found out I would be getting a quicker appointment with the neurologist which happened the following week. By the time he had completed all his tests and I had my follow up, I was certain something was really wrong. I had done some research on what the dr was suspecting (Hashimoto's Encephalopathy) and I didn't think that fit. The symptoms people seemed to have (seizures, coma, psychosis) didn't fit, and from what I was reading it was incredibly rare.

I have truly gone through all the stages of grief.

Well...more accurately... AM GOING.

I think I'm around the "Dialogue and Bargaining" stage now.

Here's the thing, like this graphic shows, it's not a linear process. There are loops.

But I think it should look more like string art gone bad. Today I'm back at shock and denial. I don't want this thing they are saying I have. I am still holding onto hope there's another answer.

The kicker that forces my head out of the sand is my response to steroids. It was remarkable. Miraculous really. That is a very sure sign-proof positive-that the diagnosis is correct.

I think the biggest reason I haven't yet moved into acceptance and on to a return to meaningful life is that I don't have all the necessary information. I have a follow up with the neurologist next week but I still won't have all the information I want because there are tests that "should" be done that can "only" be done (accurately anyway) at Mayo in Rochester (from what I understand).

It's very hard for me to move forward with uncertainty.

That has to be where faith steps in. I say I have faith that God has a plan, a good plan. I say I have faith that He works all things for good. I say I trust that no weapons formed against me shall prosper.

If I truly believe those things then I won't keep my head in the sand. I won't be afraid, I won't be embarrassed or anxious. I won't stay overwhelmed and depressed. I won't have to struggle to find meaning in the struggle. I will be able to reach out to other people to ask for help. I will boldly explore options and be empowered to move confidently into the future.

Keeping my head in the sand, being angry over the cards I have been dealt, being scared over what the future might hold....those things keep me from living the life I have right now. Those things keep me trapped.

I don't know what the future holds but I'm going to do my best to live today with my face in the sun.

Thanks for stopping in and sticking around!

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