State of the Body Address (Feb 4)

4 Feb

It has been one week since I started high dose steroids in the hospital and four days since I finished final dose and was discharged. My symptoms remain unchanged. This is, of course, a positive result and signals that the steroids at the very least halted the flare. I see my neurologist in one month, at which point he expects to see improvement.

I don’t anticipate updating more than once a week, or as changes develop. For this post I am going to list my current symptoms for a baseline. While the disability from this flare came on rapidly in January 2020, the fatigue (physical and cognitive) had crept in as a fog sometime in the Fall of 2019.

I have a “remarkable” lesion at the top of my thoracic spine that is causing the symptoms I am most aware of. There are three lesions on my brain, but they are just loitering for all I know, because they did not get the eyebrow raised “remarkable” comment from neurologist.

While I can walk, my feet feel like I am wearing six inch platform shoes, with my toes hanging off the edge. I have not driven for three weeks, because I cannot feel the pedal. My walking gait without a cane looks something like a toddler.

My balance is not terrible, but not great. I cannot easily turn my head to the side while walking in a different direction. I like to turn my head dramatically like I am a 1940s screen queen. This has been difficult.

The numbness inΒ  my feet goes all the way though my legs at to my waist. This has included some bladder and bowel involvement (primarily constipation and bladder urgency.) We are not treating these symptoms with any intervention beyond OTC meds, as it is hoped it clears in a month. There are further options if it continues.

The numbness in my waist feels tight like a corset. It is tighter on my right side, where it feels like it gathers my ribs into a scrunched knot. This sensation is because of spasms and is the hub of most any pain I report. I have been prescribed a muscle relaxer for this and feel better when medicated, though I only need a half dose.

My neck has the immediate response of Lhermmites sign when I flex forward, drawing my chin to my chest. This is an electrical shock sensation that shoots throughout my body and down my spine. This is considered a classic sign of MS. It is one that I experienced off and on over the past 7 years, but now experience with regularity.

As I mentioned in an earlier post, I had intentions of going to Abilene Christian University to share the book of James with their gathered student body at chapel. This was on my calendar for a few months and I was determined to go no matter what. In a twist of fate, the weather for that day turned super freezing and words like “thunder sleet” got tossed around. I was given the option to back out, given the possibility of being cancelled last minute after a three hour drive to be there. I took the exit. I hope to reschedule. It was going to be a big stretch to go and likely would have added time to my recovery, so I am bummed, but not entirely.

I still have plans to share James with a local church this coming Sunday, followed by an hour or so of workshop time. If I am still in the same condition Sunday as I am today, Tuesday, I will be sharing James while using a cane and then leading the workshop from a seat.

Thank you for your prayers, comments, and encouragement. This time is not without its stabbing moments of anxiety and all aloneness feelings. I feel like I must share what’s going on especially for my fellow HSCT patients and prayer warriors, even as sharing only adds to the anxious feeling. You all make it easy. See you next week!

 

 

 

6 Responses to “State of the Body Address (Feb 4)”

  1. Paul Ellis February 4, 2020 at 12:02 pm #

    πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½ ✝️✝️✝️✝️✝️✝️✝️✝️✝️✝️Continued Prayers,Paul EllisΒ Fellow MS SoldiersΒ 

    Sent from Yahoo Mail for iPhone

  2. Connie Taylor February 4, 2020 at 12:03 pm #

    We are with you at all times as you soldier on as you always have. πŸ™‚

  3. Kerry February 4, 2020 at 12:45 pm #

    Love you & am praying for you! ❀️

  4. Deb February 4, 2020 at 11:10 pm #

    As much as I hate this new chapter of MS symptoms for you (I’m devastated with u but not as the world gets devastated), I’m ever grateful for the words of faith & added writing that always come from your unsettled stirrings & even (ugh) suffering. πŸ’–πŸ™ I love you & lift you up to heaven all the time – for urgent healing & help, but more for presence & spiritual abiding because you are a blessing to all of us! Keep on, my darling!

  5. carolyncounterman February 5, 2020 at 11:06 pm #

    πŸ’—πŸ’—πŸ’—πŸ’—πŸ’—

  6. cheryl February 6, 2020 at 8:19 pm #

    Oh dear Amy, I am so bummed to hear and read of your relapse. I am praying every day for your continued healing and uplifting. You uplift me! Your blog is beautiful, spiritual and shows your warrior spirit. God sure did NOT give you a spirit of timidity! He gave you a courage beyond understanding. He gave you a beautiful and loving spirit. Our ladies’ group was so blessed to hear your story. I can’t begin to tell you the strength and encouragement you are to so many.

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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