#hydradenitissuppurativa

[hannahcrazyhawk]

The Accidental New Profile Picture. 🔥 #redhairdontcare #genderqueer #irishpassion #trigeminalneuralgiawarrior #hydradenitissuppurativa #GreenEyes #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #cptsd #mentalhealthwarrior #actuallyautistic #traumasurvivor #raredisease #chronicallyill #transisbeautiful #disabilitysupport #greeneyeliner #disabledandsexy #disabledmodel #fire www.hannahcrazyhawk.com (at Portland, Oregon) https://www.instagram.com/p/CliqyPoLYMv/?igshid=NGJjMDIxMWI=

[agrownupgeekgirl]

Chronic Illness Warrior Queen #chronicillness #chronicpain #chronicfatigue #autoimmunedisease #psoriaticarthritis #osteoarthritis #hydradenitissuppurativa (at Ipswich, Suffolk) https://www.instagram.com/p/BrKxpGlH9g-/?utm_source=ig_tumblr_share&igshid=fnndsrljvj25

[sbobetlover]

#householdips #chronicillness #fibro ##fibromyalgia #spoonielife #chronicpain ...

#householdips #chronicillness #fibro ##fibromyalgia #spoonielife #chronicpain …

#householdips #chronicillness #fibro ##fibromyalgia #spoonielife #chronicpain #vitamind #chronicillness #fibro #fibromyalgia #spoonielife #chronicpain #chronicfatigue #spoonie #gastroparesis #invisibleillness #hydradenitissuppurativa #thyroid #hashimoto #lupus #lymedisease #kidneydisease #migraine #calcium #iron #potassium #magnesium #sodium #arthritis #heartdisease

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[hannahcrazyhawk]

"You Got This!" I bring this @abundancewands to all my procedures and medical appointments. Today is procedure day. I spend so much time sitting in waiting rooms, I go crazy. It hurts. 💙 Having this tiny sparkly world in my hand helps me breathe and stim (an autistic self-soothing mechanism). ✨️ Thank you all for being friends to me and to those who have donated to my cause, you're helping me survive. Thank you. ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #chemotherapysucks #chemosucks #sepsis #cellulitis #hydradenitissuppurativa #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #spoonies #surgery #cptsd #stimming #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #transisbeautiful #disabilitysupport #autisticpride #autismacceptance (at OHSU Knight Cancer Institute) https://www.instagram.com/p/ChaLA4SJwhX/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

New Blog is up about Meaning where there seems to be none at all...💔 https://www.hannahcrazyhawk.com/post/meaning #writer #chemotherapy #HealthCareCrisis #blog #humanrights #DisabledinSTEM #healthcareisahumanright #writing #author #hydradenitissuppurativa #trigeminalneuralgia #doctorsoffice #mentalhealthwarrior #CPTSD #spoonieproblems #healthinsurance (at Portland, Oregon) https://www.instagram.com/p/ChBhXU3LLpK/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

After a long month of hospital stays and procedures, I finally had a day I was able to get my haircut. Now, I'm recovering and paying with pain. But I did for a brief moment, feel gorgeous. 🏳️‍⚧️ ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #haircut #bohostyles #trigeminalneuralgia #braintumor #baldisbeautiful #genderqueer #trigeminalneuralgiawarrior #hydradenitissuppurativa #earrings #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #cptsd #mentalhealthwarrior #actuallyautistic #traumasurvivor #raredisease #chronicallyill #transisbeautiful #disabilitysupport #whiteeyeliner #disabledandsexy #beadedearrings #skyhigh #disabledmodel www.hannahcrazyhawk.com (at Bishops Barber Shop) https://www.instagram.com/p/Cg_A_cKreIr/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

In honor of @nasawebb finding the oldest galaxy ever observed, I'm redshifted. Procedure day, I feel old too. ❤️🌌❤️ Thank you all for being friends to me and to those who have donated to my cause, you're helping me survive. Thank you. ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #chemotherapysucks #chemosucks #sepsis #cellulitis #hydradenitissuppurativa #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #fundraising #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #transisbeautiful #disabilitysupport (at OHSU Knight Cancer Institute) https://www.instagram.com/p/CgQFk_tPS2s/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

This was an exhausting and terrible day. I love my new specialist. The road ahead is not good. And I dread what's next. I'm so sad and lonely. I do not want to go into details, just know I'm not okay and I'll be at the chemotherapy infusion center weekly for a very long time. I need a lot of support with medical needs. Thank you all for being friends to me and to those who have donated to my cause, you're helping me survive. Thank you. ❤️ ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #chemotherapysucks #chemosucks #sepsis #cellulitis #hydradenitissuppurativa #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #fundraising #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #transisbeautiful #disabilitysupport (at OHSU Knight Cancer Institute) https://www.instagram.com/p/CfzzmmGPLD7/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

Cellulitis and Sepsis are not okay. I'm not okay. I just wanted someone to know. #sepsis #cellulitis #hydradenitissuppurativa #lonelygirl #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #skingrafting #invisibleillness #spooniewarrior #fundraising #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #strongwoman #disabilitysupport ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) (at Tuality Community Hospital) https://www.instagram.com/p/Ce279LCOaKI/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

I have great news. I'm moving to Portland next week for my health and safety. I wish I could have made this update sooner, but I've been inundated with stress, pain, and coordinating my move. I'm in tears - of joy. I have an appointment with a renowned dermatologist at The Oregon Medical Research Center for a consult for a hidradenitis suppurativa drug study. I hope I qualify. This drug could change so much for SO many!! I'm stage three, I've had complete reconstruction of my groin and am at the end of the line with antibiotic resistance. I'm septic so much and have many comorbidities that are only exacerbated by this horrendous disease. Moving closer to my surgeons and medical research clinics will improve my quality of life. I’m currently living in a home with lead paint, lead pipes, and asbestos in the walls. Eugene is notorious for worsening asthma and allergies. I can’t breathe here. This move will allow me access to a clean home where I can breathe clean air and have the quality medical care that I desperately need. I want to breathe clean air. I deserve this basic need. Having been deprived of this most basic need, with lungs hurting every breath I take in Eugene, makes me angry, sad, and determined to find a healthier place to save my life! Moving is expensive. I need help with many aspects. If there are any specific things you would like to help me directly with (wishlist for new home needs, move-in costs, rent, utilities, etc) please let me know. I deserve a home where I can breathe. I deserve hope for my future. This new apartment is expensive and my bills are all increasing. I need help being able to stay in a safe and healthy home. Please help me breathe, help me have a chance for a better future with advanced medical care. I need your help. I'm scared. But I'm determined to keep going. Help me do that. I can't wait to keep everyone updated on what comes next in my journey. ❤️ Please share the word about my Go Fund Me, or donate if you're able: ✨️(LINK IN BIO)✨️ www.gofundme.com/f/HelpHannahSoar #sepsissurvivor #portlandnw #trigeminalneuralgia #autoimmunedisease #movingon #disabilitysupport #hydradenitissuppurativa #Research #oregonlife (at Eugene, Oregon) https://www.instagram.com/p/CeKrgSOLnzm/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

I just had an urgent procedure. I hurt. 😣 Please send love & share my fundraiser to help me survive the battles of chronic & terminal illnesses. Thank you to everyone who has supported me so far, because of you, I had the cab fare to get home. 💜   ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #baldisbeautiful #Emergency #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #fundraising #Paintudes #spoonies #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #raredisease #chronicallyill #strongwoman #disabilitysupport #spinalcordinjury #headaches #spinal #sorrow #DisabledinSTEM #backpainexercises #painsomnia #hydradenitissuppurativa (at Portland, Oregon) https://www.instagram.com/p/CewpkbvPSSm/?igshid=NGJjMDIxMWI=

[hannahcrazyhawk]

May be triggering: I've spent many nights in the hospital since my last post. The amount of mental and physical pain and stress I'm enduring is more than I can handle. I've withdrawn from sharing much about my life. I've received an astonishing amount of hate mail. When I'm lying in a hospital bed, no matter how many times I tell myself that my haters are cowards, their cruelty still hurts. I've been told that I'm faking all my illnesses and that I should stop posting and end my life. I've been working hard on my independent art studies. This is one of my mixed media works for this term. It's the agony. It's the worthlessness I feel, a mess of flesh and blood. So there you have it. 🎨   ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ #hydradenitissuppurativa #lonelygirl #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #invisibleillness #spooniewarrior #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #raredisease #chronicallyill #strongwoman #disabilitysupport #paintingwithatwist #mixedmediaartwork #paintingmyfeelings (at Eugene, Oregon) https://www.instagram.com/p/CZgXBLYrK-i/?utm_medium=tumblr

[hannahcrazyhawk]

Please send me your love. I'm in the hospital. I'm physically alone. I'm not okay. How the hell could I be?! This is my life. I get about 4-5 weeks between hospital stays and septic events. Bacterial resistance is hell. Hidradenitis suppurativa is the most insidious demon. Just another Saturday night facing endless ableism and doing my best not to die.   ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #hydradenitissuppurativa #lonelygirl #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #skingrafting #invisibleillness #spooniewarrior #fundraising #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #strongwoman #disabilitysupport (at PeaceHealth Sacred Heart Medical Center) https://www.instagram.com/hannahcrazyhawk/p/CXXpgAvrvgR/?utm_medium=tumblr

[hannahcrazyhawk]

I'm out of surgery. I'm suffering major surgical complications and have been readmitted to the hospital. I'm septic with MRSA. I've also had my caregiver abandon me. I'm not okay. I'm in excruciating pain. I'm alone here physically. And I'm getting worse. I'm very scared. There is too much trauma both physical and mental to process - I hate this pain. I just want stability and help with my basic human needs. No one should have to suffer life threatening complications because they are left without care. •▪︎•▪︎•▪︎•   ➡️ www.gofundme.com/f/HelpHannahSoar ⬅️ (LINK IN BIO) #hydradenitissuppurativa #lonelygirl #baldisbeautiful #sepsissurvivor #trigeminalneuralgiaawareness #chronicpain #autoimmunedisease #sickandtiredofbeingsickandtired #spoonielife #butyoudontlooksick #skingrafting #invisibleillness #spooniewarrior #fundraising #Paintudes #sepsis #spoonies #surgery #cptsd #sepsissucks #mentalhealthwarrior #actuallyautistic #traumasurvivor #braintumor #gofundme #raredisease #chronicallyill #strongwoman #disabilitysupport (at PeaceHealth Sacred Heart Medical Center) https://www.instagram.com/p/CVaZhVcFV1d/?utm_medium=tumblr

[hannahcrazyhawk]

Goodnight Portland. 🌃 I have my pre-surgical consult with my surgeon tomorrow. I'm so very tired. #Portland #Oregon #travel #medical #citylife #NFT #chronicillnesslife #sweetdreams #nftartist #NightPhotography #NFTCommunity #sickandtiredofbeingsickandtired #disabilitysupport #autoimmunewarrior #hydradenitissuppurativa #surgery #burnsurgery #portlandnw #nightphoto www.hannahcrazyhawk.com (at Portland, Oregon) https://www.instagram.com/p/CUCUzvhLbjz/?utm_medium=tumblr

[agrownupgeekgirl]

#ChronicChronicles Dealing with a bad flare up of my HS and just wanted to share a little information about it. It’s horribly painful and makes me feel gross and ugly. Also nothing I can do about it. #chronicillness #chronicpain #chronicfatigue #autoimmunedisease #hydradenitissuppurativa #fibromyalgia #autoinflammatorydisease (at Ipswich, Suffolk) https://www.instagram.com/p/Bou3ZbuAUaX/?utm_source=ig_tumblr_share&igshid=16its4vns5l6z