10 posts


The harsh reality of my disease #hidradenitissuppurativa my nice white tank top and white sports bra gets blood and pus on it. This is me. Help me find a cure! #hsawareness #hidradenitissuppurativaawareness

We love you and thank you, Dr. Ashley Biscoe! #hsawareness @jaco_jones

Walk for #HidradenitisSuppurativa (HS) Springfield Missouri St. Patrick's Day Parade 2017 | #HSAWARENESS http://bit.ly/2kTj5Ge

Well, I am going through hell today. Yesterday was the first therapy session of 90 minutes and already I am having three flare ups. One under my armpit and two at very private places which I ain't gonna mention, but it is the reason I can't wear decent clothes and I can't sit properly. I have no time to recover because tomorrow is the next session. I am mad. I am sad. I am desperate. This is not how I wanted it to be. I have waited for this therapy almost a year and yes we had our doubts if I was gonna make it, but having to quit after one session is just ... I have no words for it. I am just so devastated. Sorry, I just had to get this off my chest. I know only people with HS will really understand the frustration it brings. Hanging in there, as lots of people told me today, is just not an option. #hs #hidradenitis #hidradenitissuppurativa #hsawareness #weneedacure

My new shirt "Fighting Hidradenitis Suppurativa every day is not for the weak". Got this on Amazon for under $20
#hsawareness #hidradenitissuppurativa #hs

#HSawareness come support me in my fight against HS an be apart of our parade see ya there!!!!


Healthcare with Heart #drashleybiscoe We sit and wait for answers from a local healthcare system chart program. No response. I saw Dr. Ashley Biscoe's YouTube about HS on the computer. She made sense. She knew about Hidradenitis Suppurativa. I called her office. She answered. I told her I loved her. I told her about Jackson's stage 3 HS. I told her about Jackson's Middle College (high school senior) project Something That Matters project and how his teacher, Regina Freking suggested he go bigger with his HS Awareness Concert. Not to do a house concert but think big. I asked Dr Biscoe if she would like to come for the weekend and speak at the concert. She thought about it for one night I think. She and her husband and tech guy came, appeared on TV, spoke on the radio, spoke at the concert, sang back up and helped Jackson to heal. We made good friends and we are honored to know them. She came across HS whilst studying medicine. She was empathetic toward HS sufferers and sensitive to the amount of pain they are in every waking moment. She saw the images and made a presentation to her peers telling them they will see this in their practice. She knew she had to help. She took one look at his supplements, quotes a yeast study and I said Jax can't do yeast and she said this has it. 9 billion Cfu's a day. Oy! #attunedunctionalmedicine #hsawareness @jaco_jones

Dr. Ashley Biscoe's online medical questionnaire for Jackson. #lovethiswoman #hsawareness #jaco_jones #theellenshow

I don't usually post stuff about my illness but... #hsawareness #hidradenitissuppurativa #chronicillness

⭐Constellations forming out of scarlines⭐
Photo showing my first scar I got in middle school from my disease (others not shown). My battle with Hidradenitus Suppuritiva has been a long and hard one but I feel like things are starting to look up for me. Although I'll always have certain symptoms that cause me daily pain or hinder parts of my life, I'm having hope for my future❤Sending love to those fighting battles no one else can see❤
#invisibleillness #hidradenitissuppurativa #hs #scar #scars #me #hope #scarred #awareness #hsawareness #bodypositivity #feelingbetter #hswarrior #pain #feelinghopeful #immunesystem #skin #disease #spoonie #chronicpain #hiddenillness #bow #myhealth #bows #love #sendinglove

We love you and thank you, Dr. Ashley Biscoe! #hsawareness @jaco_jones

When you don't try to lose or maintain you just ALWAYS ate right and took care of yourself. If anyone wants to make fun or say negative things this warrior has endured more then your words #iloveme #nobodyshame #invisibleillness #autoimmunedisease #jpouch #nocolonstillrollin #hsawareness #rheumatoidarthritis #endometriosis #ulcerativecolitis #ucawareness #interstitialcystitis #curves #eatforyourhealth #igdaily #imperfect #scars #stretchmarks #iamblessed #iamalive

As someone who suffers from Hidradenitis Suppurativa (Don't google images it, trust me) I can tell you how frustrating it is that even after 124 years, there is still no research done on HS. There is still no known cause or cure. It's absolutely insane. There needs to be more awareness & research of this horrible chronic skin disease. Please help spread awareness of this! #hidradenitis #hidradenitissuppurativa #chronicillness #skindisease #HS #hsawareness

needed reminder...
#mecfs #MEawareness #endmecfs #pwme #chronicfatigueawareness #fibromyalgia #fibroawareness #hsawareness #ChronicLife #invisiblewarrior #InvisibleIllness
#Repost @natashalipman with @repostapp
One of the biggest challenges I have faced over the years, and as my health declined, was feeling as though I was a burden and not worthy of friendship, love, or success. I constantly apologised and explained that the things I did (or, really, couldn't do) weren't by choice, but by necessity. I wasn't cancelling plans because I wanted to. It was because I couldn't get out of bed. I wasn't working only a few hours a week from home because I was lazy, it was because I simply couldn't handle more. Having a chronic illness and existing in a body that can't *do* the things that young people are supposed to (and even the things we used to) can make the world a very different place. Life becomes smaller and more isolated as you find the people that really matter. Who has time for the noise and stress of people that judge you or aren't empathetic. Over the years, I realised how many people I knew constantly complained about (literally) non-problems. I can't give them my time anymore. I used to think that I used to be more fun, but the reality is, my way of having fun has changed. My social circle has shrunk. My time out has shrunk. But the people in my life don't make me feel guilty for that. They come to mine. We plan outings I can do. They offer to help without me asking, or making me feel bad or less than. People that matter and are worth it will do that without a second thought. Empathy, compassion and just a little forethought. People that understand will not push you to do things you can't. You deserve that. You deserve happiness, and love, and friendship, and success. Accessibility and reasonable adjustments just put you on a level playing field with everyone else. It's only fair. It's not your fault you may need to do things differently. Be kind, be grateful, and don't take advantage. It takes time, but please remember, being sick doesn't make you any less deserving than anyone else. After all, you're not a burden. You're a human. Card by the amazi

Worst thing about this is i cant take anything....I'm taking supplements and Tylenol. Been in excruciating pain for 2 days. I can barely walk. #hs #hsawareness #hidradenitissuppurativa #autoimmunedisease #purpleribbon

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