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Scrappy Little Misfit

by Candace Woodbury

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Life, Street, & Urban

By Candace Woodbury

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candacisms

NGO employee by day. Artist and writer by night.
Diagnosed with #granulomatosiswithpolyangiitis 10/16/2019 (vasculitis)
Be Kind.
📖 @candidnook

To all my fellow GPA warrior friends who are also

To all my fellow GPA warrior friends who are also sulfa-allergic and taking dapsone as a prophylaxis agent against pneumocystis carinii pneumonia… I thought I would share that this weekend after speaking to members of my care team who are not super close to me it was recommended that I head to the local ER for unexplained oxygen saturation levels (84-87) and cyanosis (lips, finger tips, and toes were blueish grey) and after ruling out COVID-19 and any other respiratory infections I was admitted into the hospital. ⁣
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⁣The resident doctors seemed a bit stumped as to what was causing my low oxygen levels. But thanks to one member of a GPA support group, where I reached to see if anyone had experienced anything similar, I was made aware of a condition caused by dapsone and I asked to be tested for it. ⁣
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⁣Turns out I have acquired or dapsone induced methemoglobinemia, a life-threatening condition that can be difficult to diagnose.⁣
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⁣Since my levels where not at a critical level and the doctors not wanting to keep me in the hospital if I didn’t need to be, being immunocompromised due to high-dose prednisone and recent Rituxan infusions, I was sent home on supplemental oxygen until I am able to follow up with my GPA care team at the University of Utah Vasculitis Center on Monday. ⁣
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⁣I wanted to share this experiences so that others are aware of this possibility and to say how grateful I am for this community. Having GPA isn’t the greatest, and being able to reach out to each other to talk about our different experiences and symptoms when weird things happen has been invaluable and comforting to me.⁣
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⁣Much love - Candace ⁣
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⁣#chronicillness #invisibleillness #raredisease #vasculitis #granulomatosiswithpolyangiitis #GPA #subglotticstenosis #prednison #rituxan #healing #remission #dapsone #methemoglobinemia

Friends, Family, and Strangers, I have been quite

Friends, Family, and Strangers, I have been quite as of late, mostly because I am not sure what to say. Today’s current events and what I am witnessing online has left me in an ineffable mood. So, for now I will say be healthy, be well and above all be kind.

Round 4 Rituxan complete! Blood work in two weeks

Round 4 Rituxan complete! Blood work in two weeks and hopefully mission remission will have been achieved! That is the ultimate goal… to reach and maintain remission, and get back to traveling and living life! ⁣
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⁣All effected areas are doing well. I did start using a nebulizer to help my trachea out, and that has been fabulous. Hopefully I will get some energy back soon as well! ⁣
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⁣Now to not catch any bugs… being immunocompromised is a little stressful at times, but all will be well. ⁣
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⁣I am so grateful to have an amazing team looking over me, and an amazing husband who has been right by my side through all of this!⁣
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⁣It’s been one heck of a year, but after we get my blood results we will hopefully get a three month break from it all. 🖤🖤🖤⁣
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⁣#infusion #infuisionday #chronicillness #invisibleillness #raredisease #vasculitis #granulomatosiswithpolyangiitis #GPA #subglotticstenosis #prednison #rituxan #healing #remission

Today is #RareDiseaseDay a day to help raise awar

Today is #RareDiseaseDay a day to help raise awareness about rare diseases and their impact on patients’ lives. ⁣
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⁣Awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. The majority of rare diseases have no cure and many go undiagnosed.⁣
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⁣I am Rare. Diagnosed with #GranulomatosiswithPolyangiitis and #IdiopathicSubglotticStenosis in 2019. ⁣
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⁣For More information visit rarediseaseday.org

Waking up to these two gals and their snuggles 🥰! Always makes my day 🖤.

I’m not a big fan of selfies, but this one comes

I’m not a big fan of selfies, but this one comes with a story... I’ve never been much of a morning person, but this morning was particularly difficult. Forcing myself to get out of bed for an important work call that couldn’t be missed, I had to power through the “I feel like I got hit by a bus” feeling coupled with brain fog.
These feelings along with serious fatigue and other symptoms are something that you have to deal with when you have a chronic disease like GPA and additionally all the side effects from the necessary medications (currently I am not enjoying/getting along with my prednisone, I’m sure many of you can relate). Despite it all life doesn’t stop for anyone and I’m a gal with dreams, goals, and a desire to live life on my terms.

So, here I was in all my morningness... powering through the day until now. When I can stretch, sit back, relax, and enjoy a book.
May we all find ways to keep on keeping on, with whatever hand we’ve been dealt. 🖤🙏🏻

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