HSCT Journals

Walking Video 5 Months Post HSCT + Update

by | Jul 18, 2022 | Blog Posts, HSCT Journals | 17 comments

This last month has been very, very challenging. I made a big change in effort to try and find a better way to live, and to further rehabilitation.

I have experienced a few extreme (but short lived) drops in functionality, return of two bad symptoms, combined with all of this, further strengthening of walking and standing. Overall, HSCT is giving me more and more improvement. I’m so afraid to write this as I dread if it ever reverts….

Just under a month ago, I moved to Oregon again so I could horseback ride, evade the rain and cold of my home town, and to find a more accepting environment of my disabilities. This move was nothing short of an immense amount of stress, money and extraordinary detailed coordination on my end. Thanks also to some of my amazing friends and people for their incredible help.

Sometime in April, I felt this new sensation in my brain, saying, “I think I can drive again”. In May the feeling was strong so I moved forward on a wing and a prayer, to track down a used van, in a used car market that is tight as heck. There are only 5 van models that my chosen Bruno Joey hydraulic lift (for a mobility scooter) can be installed in. I found a Honda Odyssey, and only thanks to the unbelievable help of my dear friend Ian. Once bought, I could then order the lift for the van.

This is the basis of the biggest news to share, although I know I dropped a nugget of this last post. I am driving again for short distances, and consistently. It is the first time in 8 years, since I lost this soon after diagnosis! Latest bad news is that from the beginning the lift has had issues, and just recently it has unexpectedly cracked and broken so I am housebound until this can be fixed. It’s amazing that how much energy, time and money I spend organizing things, then they crash and burn when the least expected, and desperately needed.

That aside, up until this, I made my first few drives to the grocery store, with my scooter, shopped on my own, and took the food home. I have not driven to a grocery store to shop on my own in over 8 years. To do this has made me feel almost like an adult again and it is surreal. I’m still processing it.

I have driven to my equestrian centre (Healing Reins) multiple times on my own and sucked up the yummy smell of horse manure. The lovely ladies at the barn have been fitted me into the schooling schedule and I’m riding twice a week. It is a 20 minutes from my home.

My sensory symptoms are, generally speaking, the same. A lot of pain, and in particular, I have had a return of bone pain with a vengeance. I am in the queue to see an Internal Medicine specialist for this as they can’t figure out why this is happening. It comes on in the middle of the night, wracking my already challenged sleep, and goes on into the early morning.

The other symptom that has returned is the bladder pain. It burns 24/7 and is worse when I go pee, and I do not have an UTI. It is the same feeling as when I went through HSCT. My bladder feels like a hornet’s nest, so to speak. I am going to see the doc this week.

I have had moments of brilliance with longer standing periods, more solid walking, and for longer periods. I have included a short video of walking. I can see I am still quite stiff in my hip flexors (dang, that spasticity, and some tendonitis), but really, it is a miracle what is happening ❤️

Ramp Into House
Click for New Ramp For Entry Into House

Walking Video
Click for Walking Video

17 Comments

  1. Amanda O

    Oh my! You’re so beautiful and it’s amazing to see you looking so vibrant and peppy!!! It makes my heart happy. ❤️
    Tears of joy for you, my friend.
    You’re rocking that short hair, but walking looks even more amazing on you. I’m glad to hear about your new found independence, too. I’m so excited for you!

    Reply
    • Jenny Angus

      Thank you so much my friend for all your kind words! I know you know how much all this means to me ♥️ 😘

      Reply
  2. Wendy

    I gobble up every post JG. Amazing forward steps. Ahh – the freedom of driving. Nothing like it! Love to you!

    Reply
    • Jenny Angus

      Thanks darlin! Love to you ♥️

      Reply
  3. Rachel

    Amazing! Love that little hop🎉

    Reply
    • Jenny Angus

      ♥️

      Reply
  4. Lauren

    Wow! You look fantastic & strong! Go you, I’m so happy about this update & your videos! Also your hair looks great! I have too much love for all this 🥰 if you couldn’t tell 😅 I hope the improvements are outweighing/outshining the hard bits. You’re doing incredible! 👏🏼

    Reply
    • Jenny Angus

      Thanks for your wonderful thoughts Lauren! The tough stuff makes me cry, and I’m exasperated a lot. It’s a real mind game! I really hope you are feeling the same improvements, although behind me a few months. Sending you so much 🥰

      Reply
      • Lauren

        Oh bless you, hang on in there you’re doing fab. I haven’t seen any improvement in my symptoms yet but I’m still working on them & hopeful there still time for them to improve 🤞🏼 ♥️ Coming right back atcha x

        Reply
        • Jenny Angus

          There’s still lots of time for them to improve, I have faith for you! ♥️😘

          Reply
  5. Lynn

    Dang…. I wish we could see the clip with the undies 🤣
    Wow Jennybug!!!
    Loved your fluid walk on uneven terrain and the HOP! You look so strong girlie😍
    Love the buzz cut too, it’s gorgeous really. Only you could rock hair that short and sexy.
    Also, LOVED your heartfelt giggle and effervescent smile when you cleared the threshold of your front door…warmed my heart big time.
    Ride em Cowboy!!
    Enjoy the dry heat of Oregon
    Love you,
    Lynn😘

    Reply
    • Jenny Angus

      Thanks Lynnie ♥️ Such sweet and thoughtful comments! Love you! 😘

      Reply
  6. Cheryl

    Congratulations on all the new news Jenny!
    Did you sell your place in Whistler and now are permanently down there?
    Cheryl

    Reply
  7. Lara

    YES pep in that step with a hop & all! Your walking & face are nothing less than fabulous in these videos. I loved your beautiful head of hair prior to treatment, so, I’m surprised to say, I think this super short hair suits you even better than the lovely “before” images! Congratulations on continued improvement through your rehab, keeping active & seizing your independence wherever available: YAAASSSS, QUEEN! It’s frustrating to hear of the pain because that sounds difficult to navigate on the best of days. I hope the internal med doc has light to shed on the situation & that improves again as well. Well done seeking them out. Love ya, Sister. Thank you for updates of any kind you feel like providing–whatever is cathartic to you is the best here. Keep going. XOXO

    Reply
    • Jenny Angus

      Wow your comments are beyond anything I could ever imagine. You hit every point and challenge I’m facing, and I’m super touched by everything you wrote. That pain is brutal and it feels mostly like there is never end in sight, but maybe the Internal med specialist have an answer. I will make a video of my down days; my brutal stumble’y ‘walking’ days to compare what these miracle days look like. Thank you sister for reading and sharing your insight! Love you so much xoxo

      Reply
  8. Mich

    Holy mother f***er! You’re walking like a boss. You’re even starting from crouching and standing up with no problems, walking, little hop and crouching back down. That is a miracle!
    You look pwerful!

    And the hair is looking so good!

    I’m sorry some of the symptoms have come back. Kick them in the ass my friend!

    I am sending healing, painless vibes 💕💕💕🤗🤗
    Love
    Mich 🙂

    Reply
    • Jenny Angus

      Thank you so much Mich! It’s really coming along 🙂 I need to show videos of the bad days too, because they are common and not pretty 😉 Thanks on the hair comment xoxo 😘

      Reply

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