An Update

An Update
Three weeks ago, my left leg went ‘dead’, for the lack of a better term. I simply thought I was tired; after all RSD/CRPS sufferers can tell you your body can do some funny things. The next morning, it spread to my left leg into my arms and chest.

Within hours, I was paralyzed from the neck down.

Our local regional hospital did a wonderful job admitting me, running tests, and trying to figure out what was occurring. However, they were stunned at such a bizarre case and wanted to transfer me to Philadelphia. My husband was able to contact my RSD/CRPS specialist (at 10pm on a Sunday might I add…) who took on this unusual case.

Everything was settled. I would be taken as an emergency transfer to a major teaching hospital in Philly. The only problem was, neither a helicopter or an ambulance could get out because of the snowstorm that was occurring. I stayed put, with all kinds of monitors, until the next evening.

My specialist, who typically only deals with RSD/CRPS patients, knew almost immediately what paralyzed me from the neck down. Transverse myelitis. One in a million people get this disease.

Rare; rare indeed.

Prognosis was uncertain, as only 33% of people with transverse myelitis recover. After nearly two weeks in the hospital with treatments, I was able to regain enough function to go home.

Currently, I have most of the use of my arms and am walking with a walker. Both of which I am extremely thankful for. At home intense physical therapy starts this week.

As much as I love writing and posting here on the blog, the majority of my attention over the next month or so will be in recovery. Ideas are already rolling around in my mind and I am looking forward to being back. Soon. Very, very soon.

Until then:

Here’s to HOPE!

 

15 thoughts on “An Update

  1. Rachel A.

    Hi Lindsey! Your strength and capacity for hope is amazing. Just wanted to let you know I’m praying for you, and I hope you feel better soon! (Karina sent out your blog link, in case you’re wondering how I got here….)

    Rachel :)

  2. jennifer andrews

    You are such an INSPIRATION! You have no idea how your strength is inspiring! I pray for you to be up and going. I have crps ii and have loved reading your blog. You are in my prayers from California! God Bless you dear!

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  4. Debbie

    Hi Lindsey:

    Happy to have found your page – I a happy you are recovering. You are a warrior and an inspiration. I have been battling RSD for 11 years now – I have been put in remission twice now with the use of Ketamine in hopes the 3rd time will still work to. I will be keeping tabs on your progress and know that you and your family are in my prayers.

    GB Debbie

    1. Lindsey Post author

      Thank you so much for your sweet words and your prayers, Debbie! That means so much to me. I hope your next round with ketamine goes well. Sending you gentle hugs!

  5. pat

    Lindsey,
    Thank you so much for posting the photo on painful hearing, G_d is with me to have found it and your writings. I have crps and was just diagnosed with Acoustic Shock (painful hearing). I read both your great entries and emailed the pdf to my VA doc. :) Please tell me how you could wear headphones with crps/rsd in your ears? I cannot even tolerate soft ear plugs longer than ten minutes. Because of bad hands I use to be able to use Voice recognition, to write on the computer but the loud longtime noise from trucks backup alarms basically ruined the software program and my hearing. I also tried great quality headphones (I love Bose) for music but the sounds of doors slamming, shrilling screams and the trucks back up alarms where still heard with headphones on, now I could not have them on touching my ears. Any suggestion you could give me would be so appreciated. G_d bless you, it is truly an inspiration to hear you are doing so good. :) Pat

    1. Lindsey Post author

      Pat,
      I used to wear Bose noise cancelling headphones over my head to help with startling noises. The painful hearing retraining therapy really helped to minimize those startling affects. I hope that this helps you a little. God Bless you as you travel this journey.

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