#scleroderma warrior

[destineecrystal]

"𝑻𝒉𝒆 𝒃𝒍𝒐𝒐𝒅 𝒊𝒔 𝒕𝒉𝒆 𝒍𝒊𝒇𝒆." // 𝑩𝒓𝒂𝒎 𝑺𝒕𝒐𝒌𝒆𝒓 🩸🖤✨️

Just a vampire getting her daily dose of blood.. 🧛‍♀️

It's been one struggle after another with my illnesses & symptoms lately. I gotta make some light of all the chaos. Daily need for blood, extreme sensitivity to the sunlight, difficulty sleeping at night, body has me walking around like Count Orlok, etc etc etc. Embracing the natural vampirism of my illnesses is gonna be the first step.

*cue 'Blood' by My Chemical Romance* 🎶

[purplewingedwarrior]

Happy Lupus Awareness Month.

Yes, May is Lupus awareness month. If you are anything like myself, chances are you were probably a bit confused about when the heck Lupus awareness month actually is.

Some people post stuff in May, others in October. With a disease already so complex and confusing, couldn't at least our awareness month be simple? Alas, No. But don't fret because I am here to help provide clarity!

So why do people post stuff in both months? Well, May is the true lupus awareness month. This is because world lupus day is recognized as being on May 10th. So May makes the most sense to actually raise awareness for this disease. The Lupus Foundation of America uses May as a time to raise awareness and help educate the general public about Lupus. Therefore, May is the time most Lupus based organizations are actively attempting to spread awareness or raising money for research. October, while not recognized by orginizations, can be celebrated as Lupus awareness month depending on different cultural or regional impacts. Some regions that celebrate Lupus Awareness month in October include the UK and Australia.

I am from San Diego, and here our annual lupus walk is held in October, not May. So we are regionally one of the places slightly impacted by this difference. Though, if you are to ask any San Diego based Lupus Warrior I am sure they would also say May is the Month of Lupus awareness.

At the end of the day, both months can be ours to raise awareness and funds! With all we struggle against and go through, it is only fair that we would be able to have more than one month of awareness. So grab your purple clothes, butterfly jewels, and sunscreen and get out there to raise some awareness! And if you flare, call on all of your friends and family to come help support you in your efforts.

Lord knows, some days even walking feels like it is requiring every bit of effort we have. I have already signed up for a half mile walk in October, but jokingly told my friends and family they may have to carry me if my body decides to be non-compliant. They all immediately said they would bring a wagon to pull me in, or help me rent an electric scooter. To make sure I could finish. Which made me feel so supported and seen. Getting out to these events not only helps to give us reminders of how many people truly do love and support us (because I know all too well how easy it is to feel isolated due to this condition), but it also allows us to connect with others that have this condition too.

Other Awareness months to be aware of:

-March: Autoimmune diseases in general.

-April: Sjorgens

-May: Spondylitis

-May: Arthritis awareness (but only in the U.S.)

-May: Vasculitis Awareness

-June: Systemic Sclerosis Awarenesss (Scleroderma)

-August: Autoinflammatory diseases awareness month.

-August: Psoriasis Awareness month.

-September: Arthritis (Only in Canada)

-September: Rheumatic Disease Awareness (U.S.)

-September: Chronic pain awareness

-November: Nerve conditions awareness

-November: Diabetes awareness month.

Chron's Disease does not have a full month of celebration in the US, Instead it have a week combined with Colitis. It is December 1st to December 7th.

I hope this post was helpful! Please comment below any topics you want covered in future blog posts. I want to make sure I am writing things to help as much as I can.

[aperrine111]

The High Price of a Good Day

The High Price of a Good Day

I had three great days in a row!  My pain was almost non-existent and my mood and energy were pretty good, too.  Unfortunately, my autoimmune diseases decided to come back with a vengeance and I’m now lying in bed begging the Universe for some relief.  This is the sad reality for me and millions of other Americans that suffer and struggle with autoimmune disease and/or chronic illness.  We have…

[thetragicdoll]

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A post shared by The Tragic Doll (@thetragicdoll)

My video on Barcoft TV has exceeded 5 million views! I’m thankful for your kind messages and sharing YOUR personal stories with me. You can find the full video on Barcoft’s Youtube Page for their SHAKE MY BEAUTY SERIES: My hardening Skin is Turning Me Into A Doll.🖤#scleroderma #thetragicdoll #tragicdoll #nyc #barcoft #film #youtube #nyc #newyork #love #gothic #fashion #art #music #warrior #goth #sclerodermaawareness https://www.instagram.com/p/BqiRDseA-D9/?utm_source=ig_tumblr_share&igshid=t7x5bpk6vsrg

[sofyscleropbcwarrior]

First Day Here

Hello and Welcome! It’s Sofy here 💜

I decided to start a blog so I can share my experience about being an Autoimmune Warrior.

I have 2 Autoimmune diseases: Scleroderma and Primary Biliary Cirrhosis(PBC)

I was diagnosed with Scleroderma in 2009. I am pretty sure I have dealt with several health issues prior to being diagnosed, but that was the year that my journey started.

I was diagnosed with PBC in 2014 and it was only because of my amazing Nurse Care Practitioner Kirsten because she was curious of my latest symptoms - we worked together - and she wasn’t going to stop until she had an answer.

More on those journeys in later posts. I just wanted to share a small insight into my background. 

FYI: I cuss, I have inappropriate and dark humor, and idgaf what anyone thinks. You’re gonna see a lot of memes, rants, educational info about my journey. So sit tight and enjoy the ride!

[selfcarewithsofy]

I recently decided to make some changes in my life. I am a Scleroderma Warrior, PBC Warrior, single mom to an amazing son, bossbabe who decided to partner up with my friend Jackie and her two sisters Lisette and Annette to start my own business. #ManeBoss

Now I won't lie to anyone, this is completely out of my comfort zone. I needed to take this leap of faith, as my hest friend Lauren calls it, to make more of the time that I have so Peanut (my kiddo) and I can live in peace.

Is it easy? No. I had to adjust to living a life that I never thought I would. I never thought I would be a single mom. But I'm not the first and I definitely won't be the last. It's really hard to make it on your own.

I am always a day late and a dollar short. The rent and car payment is always late. I can say a lot of negative things about raising Peanut without financial support from his dad. But we were never good about sitting down and talking about money. It was always a sensitive point of pressure in our relationship. And with the recent changes during this pandemic, he found himself being laid off.

Is that my problem? No. Is that's Peanut's problem? No. I really feel empathy for the situation he is in. So I decided I needed to change my mindset and be a good example for Peanut.

Ultimately my goal is to build a life that I love. A life where I am happy, fulfilled, empowered, and a goaldigger. In order to do that I have to do the hardest thing I have ever had to face - put myself out "there." #empoweredbybossbabes

I know that it takes a village - to raise a child, to develop yourself, to empower others....really for evrything in life. I was not good at asking for help. I was not good at depending on other people. So I decided to focus on those two things. #lovemyvillage #mytribevibes

This is all part of making changes in my life. Part of my "why." I decided to just go for it and start my own business. It may not be a good fit for everyone out there, but it is for me. I have blessed with an opportunity to generate a second income, make new friends, improve the health and look of my hair. #whyMonat #whynot

I am really excited to be a Monet #bossbabe. I want to help others discover how great these products are. For the first time in a long time my scalp and hair are clean. My hair is silky soft and shiny. The last time I remember my hair looking this great was when I was in high school!

As a Scleroderma and PBC warrior, I have to be extremly careful of what I put in my body, as well as what I put on my body. So believe me when I tell you, it is not a bunch of hype, it's not me wanting to steal your money, its not me trying to recruit you for some pyramid scheme - its simply looking for open minded people who want to learn more about living a healthier lifestyle. #vegan #crueltyfree #modernnaturehaircare

I would love to share for information about these modern nature - Monat - haircare products with anyone that is willing to have an open mind.

Disclaimer: I am in no way a nutritionist or dermatologist. I am not doing this under the care of a physician. I am however, an advocate for my own health and have done my research anot Monat products. The opinions I express are my own.

[ogomaduewesi]

Earlier today with beautiful Scleroderma warriors and Dr. Ayesha Akinkugbe at the ‘Living with Scleroderma’ by Elizabeth Onuoha-Ozumba book launch to also mark World Scleroderma Day 2018 in Lagos Nigeria. #scleroderma #worldsclerodermaday #worldsclerodermaday2018 #sclerodermainnigeria #sclerodermainafric (at Nigeria Institute of Journalism, Ogba, Lagos, Nigeria.)

[elanaspantry]

When I was 24, I met my husband. A few short months after that, my leg went numb. Little did we know that this was my first MS symptom. It would take 15 years to figure out what was going on and find out I have Multiple Sclerosis. Back then MS wasn’t easy to diagnose. _ My autoimmune disease attacks the central nervous system and often leads to a life of paralysis and disability, spent in a wheel chair. You’ve all seen the toll it’s taken at times on MS warriors like @terrywahls and @selmablair ❤️ _ Last fall, my symptoms flared to the worst they’d ever been. After I was discharged from the hospital, we saw many of the best neurologists in the world. That’s when we were told I’d been living with this disease for over 26 years. _ At times I compartmentalize my disease, and sometimes it helps. Not thinking about my illnesses (I also have 2 other autoimmune diseases -- Celiac Disease + Hashimotos Disease, as well as the BRCA mutation) helps me keep my chin up each day. Until it doesn’t, and the fatigue and symptoms slap me in the face. This is what living with autoimmune disease looks like for so many of us. 1 in 5 people suffer from AI disease and 75% of us are women. _ I’m talking about this to remind us all that we’re not alone, we have each other. And more than anything, it’s OK to talk about it. _ I remind myself every day to be kind to my body and mind, heart and soul. And I think about how lucky I’ve been to have this community of health foodies like me, ever since I went grain-free in 2001. I’m so grateful to be on this healing path with you. _ Thank you from the bottom of my ❤️. I am very truly blessed and I love you guys. _ To find out more about MS, click the link in my profile and go to What is MS: https://elanaspantry.com/what-is-multiple-sclerosis/ _ _ #autoimmunedisease #autoimmune #autoimmunedisorder #MS #multiplesclerosis #celiac #celiacdisease #hashimotosdisease #hashimotos #hashimotosthyroiditis #hashi #graves #ulcerativecolitis #UC #IBD #diabetes #lupus #rheumatoidarthritis #lymedisease #scleroderma #psoriasis #vitiligo #vasculitis #hepatitis #alopecia https://www.instagram.com/p/Bwk0G2chDnm/?utm_source=ig_tumblr_share&igshid=2iplw97g3s4a

[healthstoriesproject]

“Living with a chronic illness doesn’t mean you should lay in bed all day. You just have to figure out what works for you and [how to] reach your goals in a different way. You can still have a full, amazing life.” - Amy G. 

Living with Systemic Scleroderma

[wonkybraingirl-blog]

My Buddy, Dallas

Today I’m focusing my ramblings on a one of the toughest chics I know.  Before I introduce you to Dallas, I need to introduce you to her nemesis, Systemic Scleroderma. I had not heard of Scleroderma prior to meeting Dallas. In fact, I had to ask Lucy, Dallas’ mom for some basic information in order to convey it to you guys. 

Scleroderma is rare and chronic. Scleroderma is an autoimmune disease. S…

[myfrogtee]

Dachshund in pocket Irish St Patrick's day shirt

Dachshund in pocket Irish St Patrick’s day shirt

Thanks, keyboard warriors and fake news interwebs.  I too have scleroderma – The Dachshund in pocket Irish St Patrick’s day shirtof this, for me, are devastating. And I’m glad that I’m unable to see what’s going on inside, as it’s also affecting my lungs, heart, esophagus. For 6 years I lived in a small mountain community off the mainstream. Almost everyone who lived there thought of themselves…

[thetragicdoll]

I'm NOT most proud of my college degree or my profession, how many countries I've travelled to or how many celebrities I've met or how much money I have. In retrospective, my greatest accomplishment is battling a chronic illness and coming out of it with igrace. I never give myself enough credit for the way I've handled my traumas. I've been through the worst and I feel that any situation in comparison is microscopic. At the end of the day, I can still manage to smile.🖤#thoughts #truthofthetragicdoll #smile #scleroderma #love #nyc #sclerodermafighter #fighter #strongwoman #warrior #goth

[selfcarewithsofy]

My mom teases me that my bucket list is too long. Autoimmune warriors tend to have a shortened life span, but I don't claim that! I plan on defying the odds because I always have 💜👑 #amalficoast #bucketlisttravels #Italy #beaches #sunandsand #r&r #selfcare #autoimmunewarrior #selfcarewithsofy #sclerodermawarrior #pbcwarrior #Scleroderma #PBC #selfloveisselfcare #positivelife #positivemind #changeyourmindset #bekind #love #kindness #beablessing #inspired #blessed #friyay #ipreview via @preview.app https://www.instagram.com/p/CDTomnYgo2C/?igshid=1u63bz9ylf429

[aperrine111]

Darkness, My Old Friend: An Update Post

Darkness, My Old Friend: An Update Post

I’ve had a rough couple of weeks.  At the end of July, I got so sick that my doctor thought I had contracted Coronavirus.  Luckily, such was not the case and it was decided after a negative COVID swab that I had an unknown virus causing my symptoms.  I was sent home to rest and drink lots of fluids.  Unfortunately, we still had to quarantine for 14 days just in case the test was a false…

[aperrine111]

Still Grateful: My Very Late Update

Still Grateful: My Very Late Update

After taking a writing hiatus, I’m back with an update… well, kind of…  Honestly, I don’t have much of an update.  I have been in hiding from my doctors, avoiding tests and procedures and falling further and further into my depression.  My head has been in a dark place ever since my rheumatologist prescribed the Methotrexate for my Scleroderma.  Realizing that my diseases are progressing to a…

[aperrine111]

Sick Forever: A Rheumatology Update

Sick Forever: A Rheumatology Update

I went to my rheumatology appointment yesterday, and I left the visit feeling very overwhelmed and rather upset, too.  Dr. Courtney went over all of my recent tests, labs, symptoms and quality of life since my last visit 6 months ago.  She became quite concerned while we were going over my symptoms and how bothersome they are becoming.  It was decided that we need to add an additional immune…