My Third Snippet….This Time a Health Update (August 2024)

Hi Everyone,

Life has been inundated with challenge after challenge as we navigate the world of Alzhiemers Disease with Peter, and my disease is taking so many twists and turns I’m struggling to get through each day physically, and getting more and more exhausted.

As you know I have made the heart breaking decision to cease blogging , podcasting and last week I realised I also needed to resign my position as an online volunteer with Arthritis Queensland after 10 years of working with this amazing organisation..

Hi everyone,

It is with so much sadness that I need to advise you that I will no longer be able to volunteer for AQ and moderate the JIA forum.

You may have seen that I have ceased both my podcasting and blogging effective immediately.

Peter’s recent diagnosis of Alzhiemers has brought with it a complete life change for us. As his primary carer and with my own progressive health issues, I am struggling to keep my head above water if I try to live the same life.

This is a new chapter for us and one I want to fill with love, not stress.

I can not thank Arthritis Queensland enough for all your amazing support. The Aspire Award nomination will never be forgotten. The support of my book and Emma’s generous Afterword contribution in her role as CEO has ensured AQ is indelibly printed in my body of work.

The friendships made with forum members, volunteers, and staff are priceless.

Thank you again for the most wonderful 10 years with AQ. I’m so grateful to have had this opportunity to serve others for such an awesome organisation.

Take care

Sam ❤️

(Extract from my Arthritis Queensland Resignation letter)

Things are not great at the moment….. I had to call an ambulance on Tuesday evening due to a massive lymphatic fluid leak from my lower right leg and foot. It soaked the entire bottom end of our bed. It started at 3pm on Tuesday’s afternoon and has continued non-stop. It’s still leaking from little holes, but also through the skin. The paramedics came at 1am in the morning and wanted to take me to the hospital, but unfortunately, Greenslopes (my hospital) would not take any patients.  

We agreed that to send me anywhere else would be really counter-productive given all my Specialists and records are at Greenslopes. Instead, they wanted me to talk to my GP asap, and call 000 again things got worse.

My blood pressure was 200/100. It did go down to 160/95 while they were there, and my ECG was good, Oxygen levels were good. Blood Sugar level was good, so they felt relatively comfortable letting me stay home.  

The next morning was able to organise for my registered nurses to visit daily, which started immediately.

It turns out my OT, is certified as a Lymphorrhea practitioner and came over yesterday. She used to work in the lymphatic clinic at Mater Hospital. Her view is that I have Lymphorrhea, and my lymphatic system overall has broken down.

My GP has put me on antibiotics. I am in so much lower back/sacrum, and leg mobilising is excruciating, and for 90% of the day, it’s impossible.

If you would like to read Snippet One,  Two and Three in one place, here’s the link to the Sam’s Snippets page:  Sam’s Snippets

Whatever is going on at the moment just paralyses me, and I can not move forward at all… mostly the right leg but sometimes the left. Pain is also intense right across my sacrum. It’s been worsening over the past 3 weeks.

I’ve finally tested negative for Covid on both PCR and RATs after 2 ½ months of being positive.  

My GP would like me in hospital but as Peter’s Alzhiemers is worsening and we are still waiting for his approved Level 2 My Aged Care package to be allocated, I’m not really in a position to leave him. He doesn’t want to go into short-term respite care, so it’s all a bit tricky.

We would value your continued prayer support as we navigate such an uncertain chapter. .

Thank you so much.

Love and blessings, Sam

My Podcast

If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam. Although I’m no longer recording, there are 84 episodes available to you on all major Podcast apps.

Medical Musings with Friends

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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My book “My Medical Musings”, is published by Imaginewe Publishers and is available now

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