So many new diagnoses.

My out-of-pocket expenses continue to grow. The amount of skin care products and treatments I need is endless. Fortunately, I’ve discovered a few new ones, including a salve that eases the inflammatory pain in my hidradenitis suppurativa tracks (it’s fifty dollars per jar - one jar lasts me a month and a half). I also have a new compounded drug to order from a specialty pharmacy in Wisconsin. It also costs fifty dollars per month.

The financial burden chronically ill people carry is immense. We pay every moment, every facet of our existence, and literal pieces of our flesh to anguish.

By @HannahCrazyhawk #Typostrate #typography #tipografia #typografie #handlettering #lettering #customtype #typism #typo #design #graphicdesign #art #typelover #typelove #vector #brushlettering ⠀ #logodesigner #artwork #moderncallig… https://t.co/zhOa5I6Puy — view on Instagram https://ift.tt/2TuawnK

Dear able-bodied people,

• Stop asking us if we're better yet.

• Please READ the definition of the word chronic.

• Stop pushing your "miracle cures" on us.

• STOP, for the love of fuck, telling us to do more Yoga.

• And if one more person tells me I'm not trying hard enough and to think positively, I will fling them so deep into the sun that they will start fusing hydrogen in their assholes!!!

@spooniestrong @taythepteradctyl

Adaptation 🎖 I wrote this in my journal and I wanted to share it. #spoonielife #butyoudontlooksick #chronicillnesswarrior #chronicpainwarrior #surgeryrecovery #emergencyroom #aloneforever #Paintudes #kidneydiseasesucks #chemo #trigeminalneuralgia #hannahcrazyhawk #crohns #rheumatoidarthritis #chronicallyill #autoimmune #ptsdawareness #spooniewarrior #injustice #disabilityrights #humanrights #ableism #hidradenitissuppurativa #adapt #evolution #darwinism www.hannahcrazyhawk.com (at Eugene, Oregon) https://www.instagram.com/p/COo0hzmF-Nq/?igshid=1b9fk9nznrb91

I haven't held or flown a bird in years.

Losing the ability to practice falconry - my greatest joy, love, and obsession crushes my soul.

I grieve the loss. There is nothing that fills the hole left in my heart.

💔

As my diseases progress, all I have now are the memories of the feathered worlds. I miss you.

Soon I will be selling/donating most of my falconry equipment. But for now, I focus on making it through this week's chemotherapy and the multiple surgeries ahead.

Grant proposal done - funds finally en route! This is heaven, otherwise known as science! Long live research! I also wanted to share that I am now officially an Associate Bio-Imaging Specialist @yale. I've worked hard for this and I couldn't be more proud and filled with joy. I need this happiness in my world. 🐁🧠🔬 This triumph will carry me towards excellence and give me the support I need to continue moving forward to my PhD. I will succeed because I believe in myself. I'm so thankful I'm a McNair Scholar! Per aspera ad astra! (Photo from my very first day in a neuroscience lab). “Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.” - Stephen Hawking #grantmoney #academiclife #survivors #powerful #successtips #mcnairscholar #proudmoment #successful #spooniewarrior #futuredoctor #powerfulwomen #academic #success #neuroscience #scholars #prestigious  #soproud #hannahcrazyhawk  #chronicpain #warriorwoman #successmindset #youarepowerful #grit #neurology #neuroscience #Veteran #neurophysics #PTSD #pain #placecells #HappyFriday www.hannahcrazyhawk.com https://www.instagram.com/p/CRIAd69lNBU/?utm_medium=tumblr

Trigger warning ahead: Many of you know that I have Hidradenitis suppurativa, Stage 3. It's a chronic autoimmune disease with no cure. It has been untreated my whole life. It started when I was eight years old. My groin and thighs are chronically covered with abscesses. My father would restrain me and stab thumb tacks into the boils before he raped me. Nothing helps this pain. My past partners would tease and shame me about my HS. This disease carries so much trauma with it. I have never had surgical intervention, until this weekend. Some of my abscesses grew to the size of golf balls and baseballs. For the past week I have been violently ill and it got to the point where I couldn't walk because of the pain. It was so hard to seek medical help. I knew they needed to be lanced and would require antibiotics. The procedure was horrible, my body powers through anesthesia. So, I felt everything. The doctor admitted me for the weekend. I was treated with multiple IV antibiotics. The cultures revealed that I have MRSA and a whole host of other bacterial infections.  I was discharged. Today my fever spiked so high that I was hallucinating and couldn't stop sweating and shaking. I had to take another ambulance ride to the ER. I almost didn't come back. I thought that I should just be strong and power through it. I am learning not to listen to that bullshit. Logic is my friend. And logic told me that if I kept letting this go, especially while being on chemotherapy - I was risking my life. I was right, but it took so much courage to make this step. I hurt in every way now, the flashbacks, the pain, and the toll this takes; it hurts so fucking much. I need total reconstructive surgery and skin grafting on my groin. That will be one of my next major surgeries.  And classes started this week. I am so lonely, sad, and overwhelmed. 😓 #spoonielife #butyoudontlooksick #chronicillnesswarrior #chronicpainwarrior #surgeryrecovery #emergencyroom #aloneforever #hospitalselfie #Paintudes #photoofthenight #chemo #trigeminalneuralgia #hannahcrazyhawk #crohns #rheumatoidarthritis #chronicallyill #autoimmune #ptsdawareness #artoftheday #spooniewarrior #hidradenitissuppurativa (at PeaceHealth Sacred Heart Medical Center University District) https://www.instagram.com/p/CJsQbBFl0T_/?igshid=11bxtqapoani6

Can't talk, I'm in septic shock. This time the sirens wailing in the distance were coming for me. I'm headed in for an emergency gallbladder and appendix removal in the morning. 🏥 The only thing holding me together is the memory of my hawk's wings. 🦅 My mind is now entering into absolute battle mode. All I can do now is hold on. The war continues and my battle rages on. I am a godammed Warrior. I am still here. 🛡 #spoonielife #spoonies #butyoudontlooksick #chronic #chronicfatigue #chronicillnesswarrior #chronicpainwarrior #emergencyroom #aloneforever #fuckthisshit #hospitals #selfiemode #chemo #suicideawarness #trigeminalneuralgia #hannahcrazyhawk #crohns #rheumatoidarthritis #chronicallyill #afraid #ptsdawareness #greeneyedgirl #depressionawareness #neurology #tumor #spooniewarrior #surgery #gallbladder #appendicitis #strongaf www.hannahcrazyhawk.com (at PeaceHealth Sacred Heart Medical Center) https://www.instagram.com/p/CCsso35lV12/?igshid=z2q2gvx55npp

Amazon Influencer

I feel it's time to share my news. I am now officially an Amazon Influencer. My page is ready for traffic. Please take a look at my endorsements: books, home decor, art supplies, Spoonie Must Haves, Falconry Books, appliances, and a lot more awesome stuff I've found helpful.

https://www.amazon.com/shop/hannahcrazyhawk

🌻💜🌻

Trigger warning ahead: Many of you know that I have Hidradenitis suppurativa, Stage 3. It's a chronic autoimmune disease with no cure. It has been untreated my whole life. It started when I was eight years old. My groin and thighs are chronically covered with abscesses. My father would restrain me and stab thumb tacks into the boils before he raped me. Nothing helps this pain. My past partners would tease and shame me about my HS. This disease carries so much trauma with it. I have never had surgical intervention, until this weekend. Some of my abscesses grew to the size of golf balls and baseballs. For the past week I have been violently ill and it got to the point where I couldn't walk because of the pain. It was so hard to seek medical help. I knew they needed to be lanced and would require antibiotics. The procedure was horrible, my body powers through anesthesia. So, I felt everything. The doctor admitted me for the weekend. I was treated with multiple IV antibiotics. The cultures revealed that I have MRSA and a whole host of other bacterial infections.  I was discharged. Today my fever spiked so high that I was hallucinating and couldn't stop sweating and shaking. I had to take another ambulance ride to the ER. I almost didn't come back. I thought that I should just be strong and power through it. I am learning not to listen to that bullshit. Logic is my friend. And logic told me that if I kept letting this go, especially while being on chemotherapy - I was risking my life. I was right, but it took so much courage to make this step. I hurt in every way now, the flashbacks, the pain, and the toll this takes; it hurts so fucking much. I need total reconstructive surgery and skin grafting on my groin. That will be one of my next major surgeries.  And classes started this week. I am so lonely, sad, and overwhelmed. 😓 #spoonielife #butyoudontlooksick #chronicillnesswarrior #chronicpainwarrior #surgeryrecovery #emergencyroom #aloneforever #hospitalselfie #Paintudes #selfiemode #chemo #trigeminalneuralgia #hannahcrazyhawk #crohns #rheumatoidarthritis #chronicallyill #autoimmune #ptsdawareness #baldisbeautiful #spooniewarrior #hidradenitissuppurativa (at Eugene, Oregon) https://www.instagram.com/p/CJsNOF5lNh3/?igshid=1j3w80akbqgkw

More good news from my hardwork:

The Facial Pain Research Foundation wrote about my experiences during COVID-19.

I am very proud of this and the words I spoke to the world. Please have a read and share:

💙🌍🧠🌍💙

@spooniestrong @taythepteradctyl @spoonieproblems

Vastness ~ #beachplease #beachvacation #beachphotoshoot #oceanlovers #oceantherapy #oceanvibes #oceanphotography #pacificcoasthighway #oregonnw #exploreeverywhere #oregonlife #roadtrippers #vacationstyle #sealover #seabreeze #coastallife #peacefulplace #landscapephotos #professionalphotography #hannahcrazyhawk #blackandwhitephotos #oceanwaves #oceanlove #oregonphotographer #beachlove #blackandwhite_art #blackandwhitephotos #florenceoregon #lighthouses #hecetaheadlighthouse www.hannahcrazyhawk.com (at Heceta Head Lighthouse) https://www.instagram.com/p/CM3kB1fl0Kj/?igshid=w2z43g3vxe79

I'm a falconer. This was the first raptor I held, trained, and flew. He was a Barbary/Prairie hybrid falcon. His name was Jack Sparrow. I love and miss him so much. I was thrilled when @oakparkrocks painted him for me. I cried when I saw him again. I feel like he's back with me now. This means the world to me. He's stunning! Jack died tragically many years ago on one of his hunts. With this beautiful memorial I feel not so alone. He can once again rest on my hand. Thank you @oakparkrocks for bringing him back to me. 💜 #paintings #oilpainting #falconry #oakparkrocks #falconers #falconer #handpainted #naturelovers #treatpeoplewithkindness #falconrylife #painting #birdsofinstagram #lovebirds #acrylicpainting #hannahcrazyhawk #rockpainting #naturerocks #raptor #falconryexperience #naturephotography #falconrycentre #birds #naturelover #kindnessmatters #nuts_about_birds #nature #spreadkindness #your_best_birds #kindness #randomactsofkindness www.hannahcrazyhawk.com (at Eugene, Oregon) https://www.instagram.com/p/CGMcpRMFm6B/?igshid=n9hbzi8vjpv6

💌 If you want to send me some cheer, I would love Audible Credit for books to listen to during my recovery from emergencysurgery. My email is: [email protected]

Also, I have an Amazon Wishlist:https://www.amazon.com/hz/wishlist/ls/32TANU9P1LGMG?ref_=wl_share

💘

@spooniestrong @chronicallyinvisible @taythepteradctyl @notjustanyannie @cripples-r-us-swag @chronic-illness-resources @manlivingwithra @queerability @thelatestkate

I want to explain the preceeding injustices and events about my horrific hospital visit, but I lack the strength. Here is the end of my very, very bad day.  I just took a @lyft ride home from the ER. I got into the car and the driver flinched and said, "you don't have #COVID, do you?!"  When he dropped me off, I said, "FYI, I have #Crohnsdisease not COVID!" He rolled his eyes at me and said, "yeah, yeah, whatever!" I said, "stay safe!" And I slammed the car door, my blood boiling.  The driver stayed parked and watched me as I walked back towards my apartment. Despite being violently ill and lugging my heavy backpack, I took a detour in the opposite direction from my actual apartment. He watched me walk for five minutes. I waited until he finally drove off and was out of site until I went home. I let the local #police know about his behavior. I will sleep better knowing the kind lady officer will be ramping up her rounds in my area.  We, the chronically ill and disabled are facing a whole new type of #Discrimination. 😠 #spoonielife #butyoudontlooksick #chronicillnesswarrior #chronicpainwarrior #surgeryrecovery #emergencyroom #aloneforever #hospitalselfie #Paintudes #kidneydiseasesucks #chemo #trigeminalneuralgia #hannahcrazyhawk #crohns #rheumatoidarthritis #chronicallyill #autoimmune #ptsdawareness #baldisbeautiful #greeneyes #spooniewarrior #injustice #disabilityrights #humanrights #ableism #hidradenitissuppurativa www.hannahcrazyhawk.com (at Sacred Heart Hospital) https://www.instagram.com/p/CKdYzu7FB7U/?igshid=enkc5ulaewqu