New year, new diagnosis and still coming to terms with what that means for me.
Who would of thought that a thumb surgery would result in my life being turned upside down in my 40's.
So lets recap...
This past decade of diagnoses for me (during 6 clomid cycles and 3 rounds of IVF) between the ages of 30 and 42 are as follows: Hypothyrodism, Renal agenesis, Pelvic congestion syndrome, Bicornuate bicollis OR Unicornuate Uterus (they havent decided yet), Spondylolisthesis, Scoliosis, Acrocyanosis, Bradycardia, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, Irritable Bowel Syndrome, Fibromyalgia and Hypermobile Ehlers-Danlos Syndrome.
To think I was labelled a hypochondriac. Growing up I don't ever remember much about the effects the above conditions had on me as I was too busy being a kid. I do remember my night terrors, my panic attacks and nausea at bedtime, my breathlessness, my chronic growning pains, my constant constipation. Anxiety, headaches, visual problems, brainfog, fatigue... I thought I was normal enough? HA! little did I know I was far from normal.
10 years into my journey of discovery and I feel like every now and then we do a little rewind. What a decade its been. There has been some really great and positive things that have happened. There has been tragedy. I feel like that is life and for every dark cloud I find a silver lining.
My journey to EDS has probably been one of those silver linings. With diagnosis comes understanding, not only of my own challenges but those of others. It has reinforced my goal of becoming an advocate and I've been welcomed into the EDS community by a dazzle of amazing zebras that are all unique in their own way and have so much compassion for others. After successfully completing a qualification for Adult & Teritary Teaching as well as fostering two amazing young ladies and working full time I'm hoping to join the dazzle officially in some capacity to bring awareness and support to where its needed the most. I will be completing a Community Leader and Advocacy course with the Ehlers-Danlos Society starting in few weeks and look forward to where that will lead.
Meanwhile I was contacted about my Rheumatology follow-up a few weeks back and found out the Rheumatologist who diagnosed me has retired and I will be seeing someone new. I have been without support for a while after stopping my specialist physio appointments as could no longer afford them. I actually think I met him on my Dads AI journey and I actually look forward to meeting him. Will be interesting to see his view on my diagnosis and treatment plan. I'm refusing to up my Amitriptyline as its already having an affect on my health. It's working tho! my REM and Deep sleep have improved. I'm still waiting up sore but able to still function and drive which is what I wanted. Next will be looking into my BP, Heart and Immune side of things. I've managed to put on and maintain 4 kgs with the meds and trying to eat more in the evenings. All bloods NORMAL for a change, so have never been healthier. That has come at a cost however as my intolerance for food in general has not been easy. Eating is not something I enjoy and hope that will be something i can get a solid plan in place for. Finally I have the energy to exercise though, being able to do 5 kms on my exercise bike is a crucial step in recovery and management, as is my strenthening exercises to sort out my Proprioception issues. First things first tho, sorting my chronic pain and stress will be a key element of that. I'm on the list for a Brief Pain Management program which is spoken very highly of. When staffing issues at the hospital are over I should be starting that too. Everything is slowly lining up.
Oh, and we all got Covid. Will be interesting to see if any Long Covid signs pop up during the next stage of this journey.
Onwards and upwards... to be continued.
