Update on hospital admission 2024.
This one is to check on the progression of the conditions and fine tune management of same.
It is always a roller coaster of emotions.
They CM team are really happy with how I have managed the Ehlers-Danlos Syndrome and Ankylosing Spondylitis.
I have been working with a super star support team to try to maintain my dodgy tendons, ligaments and strengthen the stabilising muscles to reduce the mobility in my joints.
I've been working with this legend Odette Raiti https://www.facebook.com/Transforming.Brisbane.Bodies?mibextid=2JQ9oc to continue physio exercises and get my nutrition to the optimum levels to reduce inflammation in my body.
For the first time in memory I have thyroid function in the normal range. Gold stars 🌟 to Odie. Annnnd inflammation markers are down.
I mean, my body is an x-file and this is proof, as I have arthritis in every joint in my body, but managed to bring inflammation markers down. But anyway, we will take the win 🏆
Shout out to my support team, including my bossy sister in law Tammy Braun who didn't even ease up on the supplements at Christmas.
Yesterday, with that news, I was at the top of the roller coaster hill.
The plan for this admission was, smash out all the tests this week, then start two weeks of inpatient physio Friday for rehab.
Tests so far have been the bloods, ultrasound on hips, check on fusing of sacroiliac joints, and measure of dislocations.
Hips or fubar
down the hill.
Still walking though, up the hill.
SI joints fused, down the hill
but no progression to lumbar spine, up we go again.
OT and ward physio come in to assess gait, hand strength, rib cage. All foooookt, left hand extreme weakness, right leg foot drag, rib cage a nightmare.
Long way downhill this time. This roller-coaster just went underground.
Rehab physio comes in looks at everyone's reports and results and says I can go home once the palliative pain specialist gets the pain under control as it is currently extremely under managed, congratulations on doing such a fantastic job of managing your EDS, she's never seen a stage 3 Zebra who still mobilises so well.
So I'm over here thinking go me, star patient, get to go home to my pup and my chookies, until she hands me the shit sandwich of there's no point in rehab as my tendons and ligaments are beyond repair and my neck to cervical spine are cactus and have nothing to help stabilise them, so also no saving them.
I can actually cope with the fact I will soon be in a wheelchair. A wheelchair and any other mobility aid I have that helps me keep doing life is awesome in my eyes.
I have loads of fantastic people in my life who are wheelchair users and will 💯 get what I'm saying about them equalling freedom for those of us with disabilities.
The hardest thing is all the ableism I know I'm about to face, and the barriers that are now going to get thrown in my way by people's attitudes, lack of education, and pity.
I can't deal with pity. 🤮
Because most people think the worst thing in the world is to end up in a wheelchair.
It isn't.
I will still achieve anything I put my mind to.
The wheelchair is not a barrier.
Ignorance is.
I have a million times more anxiety about having to tell people I'm going to end up in a wheelchair, or people's reactions to my being in a wheelchair.
So take a lesson from my beautiful grandbabies and just be happy that I can still do stuff and that I am here and present and love me exactly how I am.
They've set the bar and I'll accept nothing else.
Now I need to decide if I want it in Rose Gold, or metallic chrome. Glitter spokes for sure.
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