My daughter has dysautonomia, Raynauds, GERD, autism and more. She shows symptoms of MCAS, but no anaphylaxis or severe reactions. She has flushing, skin rashes to basically everything her skin touches, and itchiness. Could this be MCAS? #POTS #MastCellActivationDisorder #Dysautonomia #AutonomicDysfunction
Today's a good day to cheer each other on 🙌. Share a milestone or win (big or small) that you've had recently 🌟.
I'll go first!
I finally feel more motivated and have a bit more energy to work on my personal projects and goals. It's taken the whole month of January, but better now than never 💃.
🎉 Let's also cheer on Hannah R. in her new Mighty article here:
#CheerMeOn #ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe
Compression socks and leggings are great when you’re going to be standing for a while. It’s best to get ones with 30-40 mmHg (the higher the number the tighter they will be, meaning more support) #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #potslifehacks #ChronicIlless #dizzy #Lifehacks
When you’re feeling dizzy, get a flavored salt tablet and place it under your tongue. If you are nauseous, you don’t have to taste it, but your body will still absorb it. Works great! #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS #POTS #POTS
Sometimes I say I don’t need people to catch me, because I am friends with the floor. The floor catches me sometimes and laughs at/with me sometimes and sometimes lands a well-meaning punch too hard. I have to be patient with this friend who often shows up unannounced, thinking to surprise me and it will be great fun. When I’m writhing there, if someone is in the room, I know they cannot contain my pain. It hurts me to see them watch me there - someone they love’s body trying to turn itself inside out. They plead, beg and bribe the gods for a way that they can help. There’s not. I dance with the edge of knowing what I can control; where is my power and where isn’t it? But most often able people have not fought this war of attrition, and are not prepared for the blow to the gut knocking all the air from their hearts. Seeing them powerless and unaccustomed to this pain adds the hurt of another too and it weighs so much. But the floor, for all its flaws, is quiet after the initial impact. I scream and it listens.
I'm back from holiday with my boyfriend's family. In attempt to fit in, I joined them for a 600m forest walk and ended up with chondromalacia, or as you may know it "runner's knee". It's horribly hilarious how weak my body has become.
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.
Being chronically ill definitely comes with its own set of complications, and we wish there was access to every type of specialist out there for all of the medical needs we have as complex patients. But realistically, not every single geographic location or insurance plan makes that feasible.
If you had it your way, what type of specialist do you wish you had? What would make that specialist helpful to you?
P.S. Check out Jeannette Reed’s new Mighty article about this topic: themighty.com/topic/cancer/therapist-cancer-specialist-team-...
#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe