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My medical journey

In progress, I hope to have this page completed (updated) soon. 


  1. Wow, I can't believe how much you are going through. I too have all the same problems, but my GI tract is working at 30%, so a Jtube has been useful thus far.
    I wanted to let you know, as far as the urinary problems. I have Fowler's Syndrome, aka Neurogenic Bladder, so I am not able to urinate on my own. I self catheterized for a long time but eventually had an Interstim Neurostimulator placed. I just though maybe this could be a better alternative.
    I hope things stay on the "good" side and that you have more better days. You are in my thoughts and prayers, my Zebra friend. I am sending Gentle Hugs your way!

  2. Wow, this was pretty sad to read, I hope you are keeping well. Email me if you need any support, I am in a wheelchair too, I am a T11 Incomplete spinal injury. rb1003@hotmail.co.uk :)

  3. Stumbled upon your blog and am sending positive vibes your way. Keep your chin up sister, you are a beautiful person inside and out. =)

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  5. Hi, I came across your page and just wanted to say that I hope you do get better. I know the medical aspect of the illness but there's always hope. Keep your head up and always think positive. =)

  6. Have you been worked up for mitochondrial disease?

    1. I'm currently under investigation for it x

  7. Hi just wanted to say thank you for writing this website. I can really relate to what you are going through, i have been unwell for the past three years with several things (including fowlers syndrome) and my life has completely turned upside down. Im in and out of hospital several times a month, i keep a constant hospital bag packed, i used to have a normal life (im 32) but now im dependent upon my mum, i cant really have a social life, work, go places and am in constant pain, it is also a struggle to eat. I find that although people try to understand what im going through, they cant really, and it is so lonely and isolating. Its also very scary and frustrating at times. Im sorry to hear what you have to go through i think your such a strong and brave person. Your story has really inspired me and i feel less alone knowing that there are people out there who go through all this too, especially as a younger person. Theres so much i want to say but it would take up too much room but thank you for this website and talking about what you have to go through, keep strong x,

  8. I am loving your blog just like my life with Irlen Lucy check out my blog Day of life of a person with irlen.

  9. God bless you. Just came across your blog. You are so resilient and beautiful. I hope your journey is filled with support and love.

  10. Lucy, one of the saddest medical stories I have ever read. How can one beautiful person endure so much, but there are no answers, only love to keep you going. I pray your life will hold deep meaning for you, and I am sure your Spirit is perfect for all time. I was seeking help for my daughter but now I realise how fortunate we still are compared to others such as you. God Bless you, Lucy, and your family who love you, and may all those who work to help you be workers in Light. Amen.

  11. I can't stop crying reading your story Lucy. You are really a bright star in the horizon of your unique sky which l can see filled with massive positivity and I feel with my heart that your health will improve one day.

    Loved ones go through so many tests and tremendous trials because they are loved dearly.

    Keep positive as you always have been.

    Please keep writing your updates as and when you are able to. I learnt so much reading your story, l'm going through EDS HT3 and all the complications with gut too but not as severe as yours.

    Thank you for the effort you are putting in sharing your story despite what you are going through.

    You will be in my prayers forever.d. X

  12. I was reading your story, and feeling that my problems were absolutely nothing. What you have gone through is utterly unbelievable, and I really don't know how you have managed to keep going. You are a true inspiration, and thank you for sharing such a gruelling journey. You are a true star. x

  13. Can I just say you are amazing. I found your blog because I googled professor Knowles. I have just seen him and was in my way home feeling very sorry for myself and everything that I have been through in the last 9 years. I have Cauda Equina Syndrome from botched neurosurgery and have had hundreds of appointments, numerous tests and a few ops along the way. But nothing compared to what you have gone through sweetie. I hope that the experts can start to find some answers for you that are going to make a difference. I totally get how it can all get you down, day after day. You are an inspiration! Best wishes xx


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