hashimotos

Make me feel a lot better. #ChronicObstructivePulmonaryDisease #Fibromyalgia #Epilepsy #PTSD #RapeSurvivors #Headache #AutoimmuneDisease #hashimotos #Arthritis

Hello everyone,
I have delayed posting an introduction, because I am still in the process of getting my full diagnoses, but I decided that after over 2 years of hiding, it is time to let people see me.

I got sick with a virus in March of 2020 while working in the hospital as a registered nurse. This picture was taken only a few days before I got sick and captures what I thought was most important to me - movement. When asked what I could never live without, I would respond with, “sunshine, movement, connection, laughter, nature and curiosity”. Over the past couple of years, I have lost all of those things, besides curiosity and laughter.

I have spent the last half of a year in a dark room, and have been completely bedridden for months. I watched myself get chewed up and spit out by my own profession, as many others have been. I was gaslighted, denied disability and my physical health declined in the absence of medical care. I developed worsening Parkinson-like symptoms, it became hard to speak, chew and my voice changed to a hoarse squeak. I do not know if I have multiple system atrophy, but I have frighteningly been a step ahead of my doctors by treating myself for dysautonomia months before a diagnosis.

I can’t go outside or open my windows during the day to worship the sun, but I am strengthening my connection to the moon 🌚 in its absence.

When I close my eyes, I can still feel the soft breeze of the wind blowing through my hair, the crunch of rocks beneath my feet, the sound of a stream, the smell of flowers and the feeling of lightness in my soul as the sun envelopes me. I am far from the mountains, but I can still feel myself in them. I do not know if I will ever get them back, but I am so grateful that I have been able to stand in front of them and feel so grand and yet so small.

I feel the ache in my chest for all of you that have been treated poorly by our medical system that was not created to help those with chronic illnesses, multisystem problems and multiple diagnoses. I feel the ache in my chest for all of you that we’re not believed by your family, friends or doctors. I feel the ache of not reaching out for help, because in the absence of tests, I could no longer handle the pain of people not believing me. I went from people saying “you don’t look sick” to my doctors saying they aren’t comfortable treating me, because my problems are too complex and I need a full team.

I started my career as a nurse in the Neuro ICU. I saw incredible miracles and incredible suffering. I helped people live and I helped people die. I saw some that were stuck somewhere in between. I find it ironic that my worst fear was losing control of my body and mind, and now here I am facing my worst fears and laughing often, because the universe really does have a sense of humor.

Over the past year, I have learned so much about myself and the depth and beauty of the chronic illness community. I have experienced profound healing of spirit, but that healing has not extended to my body. Sometimes I am afraid, but I have found comfort in my curiosity for the unknown. I told one of my friends months before I declined that I felt as if I were either on a path to healing myself in order to help others or I may be preparing to die. The unknown is always difficult and I am trying each day to surrender.

I recently read a story by my favorite poet Sez Kristensen and found great comfort in her beautiful words. I do not know where I am going, but “the forest knows, the raven knows, the moss knows”.

Thank you all for sharing your beauty, vulnerability and strength. We are not alone.

#MightyTogether #AutonomicDysfunction #Dysautonomia #hashimotos #AutoimmuneDisease

#SuicideLossSurvivor #RapeSurvivors #PTSD #ComplexPosttraumaticStressDisorder #Epilepsy #Fibromyalgia #EssentialTremor #hashimotos #MacularDegeneration

After 45 years of fibromyalgia, disc disease (leading to 4 spinal fusions), Arthritic changes requiring 12 major surgeries, I have given up Hydrocodone/Vicodin for good.
I knew that I was addicted when I couldn’t imagine my life without it. My family confronted me about the lack of clarity in my speech. I had absolutely no motivation for anything.
I feel everything coming back to life! My daughter calls me to “chit chat” again! I had no idea she had been avoiding those calls. My own home is taking shape and getting organized.
I now treat my pain locally with heat or ice and Tylenol. I’m going to be just fine without narcotics. Has anyone else gone through this awakening?? #Fibromyalgia #Epilepsy #EssentialTremor #PTSD #Anxiety #ChronicDepression #hashimotos #AutoimmuneDisease

Thought my fibro friends might like a dose of omg look at that fuzzball! Lol. He is spectacular. I call him Big Boy Roy and he is the sweetest rescue. Now the weather is beginning to cool, he is my real live heating pad.😉 Smile! Roy loves you. 😁 #Fibromyalgia #degenerative disc disease #Arthritis #hashimotos Thyroiditis #Depression

Because of my illnesses, I tend to come off as “broken” and “unlovable” to possible partners. I only see myself alone with this mindset. Anyone out there fall in love —post diagnosis?? #chronic depression #Epilepsy #PTSD #religious trauma #EssentialTremor #Arthritis #RapeSurvivors #hashimotos #Fibromyalgia