My name is Elizabeth Alden Vacha Bogan. I never thought one disease, three letters, EDS, would change my life so much, but it seems fitting to have 3 last names at 44. I was adopted and we always knew something was different about me. Medical “mysteries” started in infancy with febrile seizures, a broken arm from falling off of a chair at 5, first chiropractor visit at 7, and so on throughout the decades. I experienced insomnia, excruciating pain, excessive strength for my size and many, many injuries while I excelled in swimming, gymnastics, and several dance styles for the first 23 years of my life. I even took on major landscaping and construction projects remodeling historical homes. We always assumed it was “just me”, or a mental disorder like hypochondria or bipolar disorder as many of us are told.
I have two beautiful children who are now 18 & 16, but it was my first born who was our EDS puzzle piece as I had a placental abruption at 30 weeks. I also required my appendix out when I was 15 weeks pregnant with him, although I did not experience any major discomfort or anything. By the time my second child was born, I had been on bed rest for almost 7 months and had gained more than twice my body weight. Four major surgeries throughout my abdomen in 3 years had taken its toll. I was weak and my body had deconditioned so much that my sweet baby had to be brought to me to hold. My health went downhill from there. When my daughter was barely 25 pounds and could knock me over, I knew there HAD to be a medical reason behind all of these mysterious and random symptoms. I was not going to quit.
Thankfully, I met some amazing people with the same weird symptoms, who also had some symptoms I didn’t realize were abnormal until I was living on my own andwould often receive strange looks when I would sitcomfortably for myself. Choosing The Mayo Clinic in Minnesota in 2013 confirmed my diagnosis of hypermobility type EDS (hEDS) with a Vascular crossover (vEDS) because of the placental abruption.
I had my suspicions confirmed and a stamp of approval that what I was doing was better than most with all 30+ surgeries I had been through between 1987 and 2010 when I had a full hysterectomy at 30 years old. It is something that most people do not have the heart, compassion, or longevity to deal with. I was now a disabled mother of two under seven going through a divorce. It was a blessing in disguise. Eight years later after focusing on my health and putting my children first, I was lucky enough to meet an amazing man who has made all of our lives infinitely better. He understands and encourages me when needed, but he also knows when he needs to get me a blanket, ice packs, and/or just chill with us since both of my children were also diagnosed with EDS in 2016. I would change nothing in my journey as it has all prepared me for a life in medicine and an ability to help others.
My Diagnoses
Ehlers Danlos Syndrome (hEDS & vEDS), Mast Cell Activation Syndrome, Endometriosis, a double mastectomy, OCD anxiety type, & depression.
5 Invisible Symptoms
- Constantly feeling anxious like burning under the skin.
- Constant pain-pain so high that walking on a broken foot for 3 months seemed just like normal pain.
- A stomach with its own ideas on when I can eat. It is always full, hungry, or not at all.
- NO sleep…I mean for days on end.
- Chronic pain/brain fog. This is where your “normal” pain level is above its regular 7-8 so your brain shuts down for protection.
4 Things That Help Me Manage Pain
- Isometric strength training & swimming.
- A personalized blend of CBD/THC/turmeric and some other oils.
- Prolotherapy & Kinesiology tape
- OMT from my PCP along with “off label” medication since new studies have shown different nociceptors than were once thought. We decided with my MCAS (Mast Cell Activation Syndrome) that it was worth a try.
3 Ways My Life Has Changed
- I am not able to work because the disease is inconsistent, and most employers do not care (although I do). Having run several companies, I can completely understand.
- My type A Martha Stewart perfect life went right out the window to embrace whatever chaos is thrown at me and having to learn to roll with it. Avoiding stress is tantamount for survival.
- I have met some amazing people and have learned more about myself, as well as my personal drive since most people tell me, “I could not live like you.”
2 People Who Inspire Me
- My Dad. He passed away when I was eleven after battling cancer for 3.5 years. He had the ability to tell others in the medical community what worked for him, and he advocated for what he would & would not do. He taught me to never quit, and the value of clean eating, long before organic food was mainstream rather than some “Hippie” thing.
- My children & husband keep me moving daily. They work incredibly hard, which inspires me to want to do better and be better for them.
1 Thing You Want People to Know
Most of us feel incredibly isolated just because people don’t want to inconvenience us with invites that we often must decline, but it hurts far more to be excluded from people, adventures, trips, and friends. We want to be able to decide for ourselves if we choose to participate or not. Keep inviting us, because we constantly learn new ways to aide ourselves, as no one wants to feel like an inconvenience or less than.
You can read more about Elizabeth’s story here.