This is a very important and relevant topic for many, many people; although most people do not even realize it. This is a Ted Talk video by a very well-known expert in the field of social work, Dr. Brené Brown.
Dr. Brené Brown studies human connection — our ability to empathize, belong, and love. In a funny yet moving talk she shares a deep insight from her research- one that sent her on a personal quest to know herself as well as to understand humanity.
Brené's research into finding the core of vulnerability led her to “Shame.” She then began studying shame and vulnerability for many years to come, which she was not expecting at the time.
I was given an audiobook of hers by my (then) therapist while hospitalized for Anorexia Nervosa several years ago. It is an absolute *must watch* for anyone in the mental health community (in my honest and personal opinion). Out of all of the hospitalizations and different therapy techniques I've been taught that have really helped me, Brené Brown's words have always been something that I can witness in myself... although usually after the fact, so I'm still working on it ☺️ .
With long standing diagnoses of fibromyalgia, PCOS, fibroids, IBS, a pinched nerve at C4/5, PTSD, depression, and eczema. A more recent diagnosis of ME/CFS. A pending diagnosis of degenerative disk disease (awaiting MRI). And an upcoming visit to a genetic counselor, for screening purposes due to my sister's recent cancer diagnosis and extensive family history of cancer. I had an adventure yesterday evening:
Insert long story about symptoms (symptoms my doctor dismissed not two weeks ago) and feeling unwell here, followed by a call in to Telehealth an ambulance was sent out to my apartment. Three lovely paramedics showed up. Hooking me up to their ECG machine they detected regular PVCs. My other vitals were good and the PVCs weren't frequent enough to be life threatening. Not wanting to drastically increase my exposure to Covid I opted not to be taken to the hospital, on the understanding that I would continue to monitor my vitals and call back if there were any changes.
Today I need to follow up on the second part of my decision not to go to hospital: call my doctor's office and arrange for blood tests, an ECG, Holter monitor, and referral to a cardiologist. Such fun!
I am not looking forward to having to follow up on yet another health issue when it's hard enough to pursue care for the others!
Living in a country that has no access to proper health care, least of all mental health care, this app has been a blessing. Just knowing that there are other people who’ve been through what I’ve been through and won’t judge me is a blessing. #TheMighty #TheMightyTakeaway #MentalHealth #scapegoated #raped #gaslightnarcissticabusesurvivor #SexualAbuseSurvivors #ChildhoodTraumaSurvivors #Survivor #Scoliosis #Schwannoma #Schwannomatosis #UterineFibroids #Aspergers #AspergersSyndrome #genius
I needed to have fibroid surgery...again...the fibroids have gotten very large and I’m in a lot of pain. My fibroid surgery had to be put off because of a need for neck surgery that my insurance company has declined because of a fall that happened at my job. I’m in an appeals process, but as I wait, I’m hurting. I’m very scared about why I have so much pelvic pain and no real way to manage it. This has just been a very hard mental health week. #ChronicIllness #ChronicPain #PsoriaticArthritis #UterineFibroids #PolycysticOvarySyndrome #Endometriosis #CrohnsDisease
Honestly, I feel like all my illnesses that have been diagnosed since I was born are a misdiagnosis. Cause honestly some times it doesn't make sense the kind of pain I go through vis-a-vis the treatment that is supposed to help. But back to what I was saying; misdiagnosis. I can't fully explain the mental and emotional torture that goes in one's mind when you are diagnosed today with one thing and tomorrow you are told it's another. It's like telling someone, "You are ugly," today, only to come and tell them tomorrow, "You aren't ugly, but you also aren't beautiful either." So one is left…literally in a confused and hurt daze. That is what misdiagnosis looks like on someone, on us Spoonies, on me…And most of the times for #Spoonies a misdiagnosis is rarely a good thing. It just means we've removed one "demon" and replacing it with another.
My story begins in September 2019. Went to one of the doctors I have been seeing and continue to see and he advised I do a pelvic scan to see if there is anything causing the period pains. I knew there was nothing wrong because cramps are cramps. Only to find out I had PCOS, Adenomyosis and Fibroids.
That hit me HARD and left me in a daze for about two months. By month 3, I was getting back onto my feet and doing research, while trying to find support groups in my area to help me understand what these new fights entailed. Got quite a lot of advice but spent the remaining months in the sea-saw for, no I don't have these illness, to yes I have these illnesses and we need to learn how to live with them. It's not like I have #Fibromyalgia all figured out yet, so that can give you an idea of where I was at. Only for things to somehow get worse, pain-wise, and I went to the doctors. Only to be told, I have none of those illnesses, instead what I have are fibroids that are in plenty, growing larger in size and more by the day.
Honestly…I don't know what to feel. I'm numb. On one hand I'm glad I don't have the 2, but on the other hand I have multiple fibroids. On one hand I don't need to worry about those illnesses now, but on the other hand will fibroids become worse than what those other two would have done to me? On one hand I'm glad that they found that what I had was a misdiagnosis, on the other hand, what if this diagnosis, is THE misdiagnosis. And it's not like the medical system in Kenya helps me remove all doubts by going for a third opinion because money doesn't grow on trees.
Honestly, I'm still figuring out my thoughts, feelings and emotions about it. 💜