Hi, my name is lilbird. I was diagnosed with hypothyroid and hashimoto's disease last spring and want to see if there are other people out there that I can connect with that are experiencing the same thing. I'm also curious about how they are dealing/coping with it. Would also love some beneficial reading material for myself and my partner to deeper understand my condition#MightyTogether #ADHD #Anxiety #Depression #AutoimmuneDisease #Hypothyroid #hashimotos
Make me feel a lot better. #ChronicObstructivePulmonaryDisease #Fibromyalgia #Epilepsy #PTSD #RapeSurvivors #Headache #AutoimmuneDisease #hashimotos #Arthritis
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A Trip to the Chemo Ward Taught Me About Loneliness - and Empathy " originalText="https://themighty.com/u/susieschwartz/content/6353daae95f48e0009c9e556?utm_source=action_menu&utm_medium=link&utm_campaign=thought_full_card.action_menu/#chemo "> #Cancer #ChronicIllness #Type1Diabetes #Fibromyalgia #MECFS #retinopathy #Music #Songwriter #Gastroparesis #Neuropathy #hashimotos
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
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I've recently taken on a part time job at a department store. $13/hr. My friend asked me: why are you doing this to yourself?
(She may be right) but I need $ to live, and my $32/hr contract job (easy) has ended. So what's a Gal to do? 🤷
#Fibromyalgia #ChronicFatigue #hashimotos #ChronicDepression #ChronicPain #Spoonies
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#SuicideLossSurvivor #RapeSurvivors #PTSD #ComplexPosttraumaticStressDisorder #Epilepsy #Fibromyalgia #EssentialTremor #hashimotos #MacularDegeneration
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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
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Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.
I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.
Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.
Sometimes my head feels pressurized and floaty.
Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.
Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.
The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.
I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.
Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.
At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.
I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.
#Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS
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
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