One Year Ago

Today is my birthday! (Please excuse the exclamation point.) A year ago today it was muggy and rainy as it is now, and I went for six mile run which I barely finished. I had worked my way up to eight again after years off from distance running. That was the day I began to realize something was wrong, but as you can read in My SCD Story, I had no idea what I was about to face. A year and one craniotomy later, I’m still facing it — but at least it has a name now, and I have a few new tools for fighting it.

For the past sixteen days I was in Germany. I travelled with my warrior wife and two small children to a time-zone seven hours away. I got my first ear infection in my repaired ear on day one of the trip, but armed with emergency steroids and antibiotics, it was sent packing fast. I had several good days to start, then relapsed into symptoms that felt a lot like the beginning of everything a year ago. It’s the left ear acting up, reminding me of those holes still in my head.

Despite the downturn, though, and the hearing loss and tinnitus, I have a lot to be grateful for only five months removed from surgery.

The fact that I made that trip  — two 18 hour travel days, hustling through airports, walking through big cities and across open country side — is pretty incredible to me.

I’m able to write on most days without serious brain fog, though cranking out a letter of recommendation yesterday with the jet lag was pretty rough. I have lots of projects cooking again which give me energy and hope. I find, for whatever reason, that pain relievers and swelling-reducers lessen the pressure that builds in my skull over time, as does sleep, so I’m hoping to find a healthy balance there. Can’t live on tylenol, I guess. I’m also beginning Cognitive Rehabilitation Therapy today, hoping to sharpen up and take the fight to memory loss and brain fog. Taking consistent breaks from the computer screen every 20 minutes helps, and forces me to waste less time. Avoiding stress, or coping with it well, helps, too.

I worked in my garden for two hours yesterday, which was necessary given that it had been neglected for over two weeks.  I can walk a couple of miles at a time. Occasionally I can jog if I keep my eyes on the ground and not on the bouncing horizon.  My legs get tired really fast, and bending up and down makes me dizzy, but avoiding those kinds of situations won’t make it better, and does not teach the brain to adapt, so I plough through it.

With consistent stretching, I think I’m learning to manage SCDS’ power to twist my body into painful knots. My neck, shoulders and left hip/leg are still problem areas, but I’m working on it with PT, VRT and Yoga. I stretch a lot, and spend a lot of time and money working for equilibrium these days, but I’m lucky to have these options and opportunities.

I’ve learned that sodium, caffeine, alcohol, and sugar make me feel worse. Add that to my gluten free diet from Celiac Disease, and the fun food options quickly become limited — but also more healthy in the long run.

My loving sister-in-law is an incredible audiologist, and she is going to be able to get me a great deal on cros hearing aids if I want them. I’m still trying to decide if I need them yet. I feel the loss at work more than at home, so I probably should. The neuromonics tinnitus therapy is still a bit out of our price range, and while it’s bothersome, I’m coping with that fairly well most days.

So, as I gain a year today, I’m hopeful but not content, inspired but not naive, and better but not well. I may never be all of what I was, but I can try to be the best at what I am now.

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6 thoughts on “One Year Ago

  1. Kay Himes

    Brad, even though you haven’t healed as well as you would have liked to, just know you are an inspiration to many. We have traveled and are still on a journey that most will never understand. So just thank God that there are those of us who do know and understand what each of us in this SCDS family face each day. Be blessed!

    Reply
  2. Ed Risinger

    Well said! I was wondering how you were doing. How did you obtain emergency steroid and antibiotics? That sounds like a great idea. The road to recovery is a long one and I get very frusterated by my limitations. Did you deal with massive headaches after surgery. I seem to be getting one almost everyday. So bad very hard to do anything. I’m glad to hear you are working again. Take care!
    Ed

    Reply
    1. Brad Post author

      Ed, headaches were only ever a slight problem for me. Regarding the drugs, my doc wrote scripts for me to fill and take with me just in case. I always do that when traveling.

      Reply
  3. Jason Waldow 760-521-1460

    Brad sounds like you and I are in pretty similar condition… after surgery on the left side I have lost a good percent of hearing — still have dizzy and crowd issues and the tinnitus is a constant absurdity. I am a professor of Communications and am back to work with daily struggles as it has been six months since surgery. But days are rough–we are now discussing having the surgeries on the otherside– I had fistula as well. It has taken me almost 4 years to get a name for this and a possible way to cope but we are all here now. In Buddhism, there is nothing more inspiring that a health victory and that is the path we are on for those who know us. Every little bit of progress is inspiration. Lets keep winning. My surgeon (Wackym) has not mentioned the hearing aid might need to check that – Reach out when you can I would love to talk about our shared journey as professors with SCD
    jason

    Reply

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