I recently wrote a letter to the members of my support forum, Medical Musings with Friends . I wanted to apologise for being so quiet with replying to their comments on the forum, and not commenting on posts in general lately.
I’ve managed to schedule daily segments to encourage community and discussion, but I’ve had little energy for much else.
I also want to apologise to my chronic illness/patient advocate blogger colleagues. You have been so amazing supporting my blog, sharing my work on social media etc, and I have dropped the ball entirely through sheer exhaustion and really just taking on too much, when I should be dedicating way more time to resting.
There are a number of reasons and I haven’t given my readers a proper update for a while….so make a cuppa, get comfy and have a sit down with me while I fill you in:
♧I had an MRI on Sunday on my Lumbar spine to check disease progression in that area. The whole trip took 4 hours, so you can imagine I’m dealing with the consequences of that this week. It did however give me the wakeup call I needed.
♧The results were available today…..my spinal instability has advanced two grades since last year. My nerves are more compressed and everything is all just a little more messy and complicated from L3 to S1. The damage in this area is severe.
♧A number of my spinal joints are full of synovial fluid and have cysts, but overall it’s the spinal instability and severe stenosis that’s the most serious issue for me. Surgery is essential but just can’t be done due to extreme risk of failure, or death due to complications, all because of the terrible integrity of my bones. Pain and worsening disability are my major issue with living like this. If I lie flat I get some relief but other positions, including sitting, standing, walking, (or should I say hobbling with a walker), cause severe pain despite strong pain killers. Even my new, custom made, wheelchair doesn’t help in terms of pain.
♧Recent blood tests have also shown I have two kinds of anemia. I have iron deficiency anemia, which has thankfully been helped with an infusion, plus I also have macrocytic anemia. This is a blood disorder that happens when your bone marrow produces abnormally large red blood cells. It’s likely linked to my bone disease. I’ll be speaking to my Hematologist about this in detail.
So that’s the main health update. I also still deal with constant multiple fractures in my feet and have ankle, leg (femur) and hand fractures too.
On a brighter note….
VOLUNTEERING/ WORK/ WRITING/ PODCASTING
♡I’m a firm believer chronic illness is a part of our life, not all of our lives, so having purpose is so important.
♡I love my online volunteer work with Arthritis Queensland, as a Moderator for a parent support group, for families who have children with juvenile idiopathic arthritis. It’s such an honour.
♡I love writing. My blog is my passion and book two is perhaps less of a distant dream, more of a long distance possibility.
♡I am doing some editing work for my Publisher. It’s something new for me, in a professional sense, but so rewarding. The book I’m editing at the moment is one I know you will all love when published. You’ll also know who to blame if you find any errors!! Slightly scary thought.
♡ I’ve also been doing some Podcasting collaboration work with Melissa Adams, host of I Am Not My Pain Podcast. My two part interview was some of that work, but we have another project we are in early discussions about. Watch this space!
On Melissa’s Podcast you will find weekly interviews with amazing chronic illness warriors from all walks of life.
♡ And then there’s my greatest love…Medical Musings with Friends.
I always read every comment and every post, even when I don’t reply. My members are always in my thoughts and prayers and I love them dearly. Their trust in me, to provide them with a safe platform to share their own chronic illness journey, is such a privilege and I feel very humbled…..and responsible to not let them down.
FAMILY AND FRIENDS
There are also the obligatory family and friends issues we “generally” all have in one way or another.
At the moment my best friend’s husband has been our biggest worry with long Covid, double pneumonia and legionnaires disease. He has been on deaths door but is beginning to turn a little corner. We are now more confident he will make a full recovery. It really has been a miracle, even his Dr has acknowledged this. There is however still a long way to go and prayers continue.
It’s still only 17 months since my Dad passed away. It’s his birthday next week and, as you can imagine, grief is still raw and I miss him so much.
So life is full on and I’m having to ensure I take extra rest breaks given my health issues, which can be challenging to do when I’m so passionate about all I’m involved with. I so want to do more but, the reality is, I need to do less.
I love you all loads and thank you so much for being a part of My Medical Musings. I so appreciate your support, especially as I know so many of you do “walk in my shoes” and have your own challenges.
Please look after yourselves, (yes I know, it’s a case of do as I say, not as I do)
Life can have purpose without making our health harder to cope with. A lesson I’m still learning and trying to find a way to get it right.
I’ll let you know if I work it out!
Love, Sam x
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.
My book “My Medical Musings”, is published by Imaginewe Publishers and available now to purchase as a paperback or e-book.
Here are the links to online retailers if you would like to purchase the book:
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women