It’s Time…


A friend of mine who writes her own blog about her bikes, trips and life experiences just posted after a long hiatus.  Why?  Well, like me, she didn’t have much to post about bike, trips but she did about life.  Hence, why I haven’t posted anything in months.  You see I feel if I have nothing pertaining to riding why write?  This post is an update as to why I am NOT riding.  Read along or “X”out if you choose.

In a nut shell I am bike-less.  Sold my bikes because I can’t ride.  Sold my bikes because it’s too depressing to be that aware I CAN NOT ride.

Riding requires eye sight.  After numerous battles since 2014, divorce, motorcycle accident with fractured right tibia in 2015, hit with Graves Disease Sept 2016, “treated” the graves with radioactive iodine in December 2016, hit with 1 in a million thyroid eye disease  (TED)in February 2017 and now?  The thyroid eye disease has gotten so bad I have had at thyroidectomy, June 2018, Left eye orbital decompression surgery July 2018 and then right eye orbital decompression surgery Sept 13 2018.  Also found out recently that my pigment epithelial detachment (PED), diagnosed in 2007, just bad luck to have it, has moved up towards my retina.

Left eye post op day 6

 

Two competing issues.  I high dose steroids for Thyroid Eye Disease TED), not bulging eye one . but the use steroids made my detachment move.  Down goes the steroids in come inflammation in my right eye.  Bottom line I can not see well enough to work or drive consistently.  Due to high dose use of steroids I also have steroids induced myopathy.  Severe weakness and get out of breath easily.

So, you see…when for years I took vacations, took adventures on my bikes, explored new places…that was living.  Now, I spend almost everyday off at the specialist office only to hear surgery is a defensive measure, there is no cure for TED and my endocrinologist saying I an in survival mode, just doesn’t cut it when it comes to riding a bike.

I dream bout riding again aimlessly and being back to me.  I have no idea why my body has given out and my eyes.  I have no idea what the future has in-store for me. Will I continue to see something?  Will I be able to work?  Will I be disabled?  Dreading that possible reality.

I just don’t know nor do the specialists.  So, there you have it.  Silence broken…TMI, probably, getting re married though Sept 28th.  I will look like Pam beat me up being only 15 days pot op from eyed surgery #2.  She’s a saint, has to be since 2015 I been really in and out of commission up until present.   What will we ever do if I actually get healthy?

That’s about it.  Everyone says be patient…even though there isn’t a cure for either TED or PED, be patient.  No prognostication.  Be patient.  So, I will.  I have no choice.  I am sidelined from work and as I be patient I go to the ocean a lot to swim and try to relax.  Sounds like what a life but when your vision is so blurry you can’t even see the words as you type like I am here…it’s bit unnerving and scary.  Love spell check these days.

If you read this thanks and if not totally understand.  If there are grammatical mstakes or missing words, well…I did my best.

 

 

 

 

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28 Comments

  1. Anonymous says:

    I am sorry to hear about all you are going through but also glad to hear from you. I know wishes don’t do dishes but I will send best ones along anyway. I am glad you have someone in your life.
    Jimi

    • advgrrl says:

      Thanks and yeah it’s been a rough few years compared to what I’m used to. Amazing how things change but again I’ll remain hopeful that my vision will at least go into remission and be able to work at least. The thought of having a disability is daunting to me. Thanks for the comment, I appreciate it.

  2. zed14 says:

    Really sorry to hear. I really have no words that can help only to say that I’m thinking of you.

  3. Wonko the Sane says:

    It’s great to hear from you again, even though the news is mostly bad. We all care about you.
    Congratulations on your upcoming wedding!
    Are you still keeping a diary? Being the selfish git I am, any chance of excerpts, word pictures, poems? If I’m way out of line here, I apologize but it really is great to hear from you!
    Keep on! John.

  4. Jackie says:

    I think of you often…thank you for posting. If you are the girl that I know, you will make lemonade out of these lemons! I am so glad you made the move East when you did…new digs, close to family, new pets, I am sure, and of course, your love, Pam. I guess I should stop complaining about having to take that dang thyroid pill every morning and having to wait 15 minutes before I can have a cuppa. My heart is with you and you have the love and prayers and support of all your followers. Keep posting and take care.

    • advgrrl says:

      Lol yeah taking that thyroid med not such a bad thing. I’m on it too but my thyroid can’t be really assessed until all this other stuff is dealt with. Thanks for commenting and words of encouragement. Let’s see how the next 6 to 12 months go. That’s what I’m being told anyway

  5. Tony Dyb says:

    I don’t visit your blog/follow on FB just for the riding stuff. I do it because YOU are a compelling person. Share your story. Whatever that story is. 2 wheels, 1 eye, blind, I don’t care. I read/care about YOU, not the motorcycles! I’m sorry life has you down/not going your way. Don’t be pessimistic…that never works! 🙂 Optimism is the only way forward!

    • advgrrl says:

      Thanks Tony….and I am staying positive as much as I can. We will see how surgery #2 goes ext week. Perhaps we can keep the eye disease a bay until there is a cure. Thanks for your support and comment.

  6. RichardM says:

    Thank you for posting an update. Sometimes when the posts stop you think of the worst. This is far from the worst. I’m glad that there are some bright spots coming up, congratulations!

  7. Maria says:

    So happy to hear from you, always check for your posts! So sad your health has let you down, sending healing karma your way. Completely understand the not being able to do what you love, difficult to stay positive. All your memories, photos, film, of all those exciting adventures fill your thoughts of a happier time and hopes of more to come. So wonderful you did them then because we cannot fore tell the future. Wishing you many wonderful years with Pam! Saw this quote earlier, love it! Take care and all the best.

    “An arrow can only be shot by pulling it backwards. When life is dragging you back with difficulties, it means it’s going to launch you into something great, so just focus and keep aiming.”

  8. David Burgis says:

    Sorry to here about your health issues I hope it improves for you soon and get back to riding again, motorcycles have been part of my life from a kid since a 11 year old in 1966 I followed you blogs on your travels since the Tiger 800’s you went to Alaska and Canada which made me want to go there to and I did in 2016 thanks for giving me the inspiration to do these rides 4 times across Canada. I like you am a diabetic fortunately it under control I was diagnosed in 2008 after being run over changing a flat on my car in Jacksonville florida, I required surgury to put my pelvis back to gether and torn organs fractured leg so what im trying to say is never give up alot of things whent though my head during my rehab wheel chair bound for three months so take care we all hope for a speedy recovery for you stay positive hope to here more adventures from you….

    • advgrrl says:

      Thanks David I feel like I know you and glad to see you are in BC. Never knew about your own injuries and WOW….never give up for sure. Thanks for the comment as always and encouragement. So glad you got to AK!

  9. Penelope Rose says:

    I was a new rider when my friend turned me on to your blogs. I followed you when you went to New York. The story of the southern cop pulling you over, still gets me. ( especially when passing an 18 wheeler) Anyway, you’re always a good read, bike or no bike. Take care and I wish you well.

  10. Jo "Picnic" MAloney says:

    Love to you and hugs. Your story, since I have know you for more than a year or two brings me up short. I’ve been whining because after my Moto 2017 Crash on the Isle of Man I also can no longer ride, at least for now. Broke Left Ankle, 2 Cervical and 2 Thoracic Vertebrae, Serious Concussion and due to head trauma damage to the inner ear resulting in major loss of balance. Both Arms Semi-Paralyzed with almost 7 months being unable to raise either arm above my waist. Having ridden for more than 55 years, Your being grounded touches me in a way that only real ADV bikers can understand. Your current maladies leave me humble and also embarrassed that I would even dare to complain about mine. My crap will heal, currently have Physical Therapy for Balance, Strength and Range of Motion and recently found out the crash also damaged my left rotator cup bad enough I may need endoscopic surgery. I was told I lost 47% of my muscle mass while laying flat on my back for some 5 months and at 71 even Human Growth Hormone and Daily Protein Shakes do little. Bless You for Hanging in as best as you can. Special Strong Wishes on your upcoming Wedding. Happy for you and your new partner. I know I rambled, but the medications slur not only my speech but also my thinking and writing. Love, Hugs and Best Wishes for you and Pam. My survival secret – Loaned my Suzuki DR650 to a mate from the Isle of Man, he has ow been to Deadhorse (from Cincinnati area) and at the moment is in Minnesota but heading to Mexico He posts messages and photos to me almost daily THEREFORE I ride Vicariously on a Daily Basis but I never get wet, to warm or too cold. That is my survival plan for now. Yup the other 2 bikes sit in the Garage, I just try not to go to the garage too often. Hugs, Jo

    • advgrrl says:

      trust me you are allowed to complain…your accident was huge and the consequences painful. I know riding is in you like me. Maybe in time we will both be back on the road. I need to at least think a bike is in my future. Sure miss getting lost. Thanks as always for your great comments and love seeing you around.

  11. Jo "Picnic" MAloney says:

    Oops – Almost forgot – Diabetic Type II, Low Blood Sugar caused me to pass out while riding on the Isle of Man, “The Crash” I Literally fell off the bike, bounced once then sideswiped a stone Nordic Wall with my head. Carbon Fiber helmet in 3 pieces (Saved my Life) and the physical damage is in the preceding message. Yes I am monitoring my sugar closely ! I have to take my blood sugar every time, before I drive. again, Blessings to You and Pam for a long, happy and Full Life Together. Jo

  12. curvyroads says:

    Glad to see you check in, even if just to update about your health struggles. We are thinking of you and wishing you Happiness in your new marriage!

  13. Kevin Brent says:

    Though I wish the circumstances were better, it is good to see a post from you again. And, I still believe you will ride again. 😉

  14. Jo "Picnic" MAloney says:

    It was as always wonderful to hear your heart speaking. Faith is what carries most of us after we fall, faith is what raises us up. Spiritual faith – now religious faith, and for some perhaps both. Best of Luck through this time of your tribulations, You are MY inspiration to keep trying to move forward. Since I am not riding at the moment (disclaimer) I will continue to try to lift others up. Q? – did you get any experience in Eastern Canada before you were stopped from riding ? I’m still focusing mostly on Vicarious Riding since at the moment that is all I have. I can only hold onto the hope of riding again and just continue to do my PT and wait and see. Now if I do get to ride again, my Ultra Limited Low, fully “Farkled Out” will need to go. With a 28″ inseam most likely a R-1200 GS won’t be in my future either. At 71 I am just no longer strong enough to handle it once I come to a stop, and no matter how much I do my PT and consume copious amounts of Protein I gain NO Muscle Mass and can only claim some increase in my range of motion. For Now – Peace and Happily Looking forward to you cementing your relationship with Pam. Happy for both of you

  15. Hope The best for you and a fast recovery. Hope you can experience the thrill of a bike or find a another way to recapture. Good thoughts are with you here.

  16. Christophe MAZARD says:

    I think of you often because your blog and videos allowed me to get back in the saddle and take my road trip to where I left it after my heart attack since 2010.

    I’m so sad to knowing your situation now, i wish you a good recovery and in hoping to read you shortly.

    thank you for your blog.

  17. advgrrl says:

    Thank you for your very thoughtful comment. Glad you recovered from your heart attack. I think with time my eye disease will exhaust itself but it’s the wait that is killing me.

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