the skin i'm in. @autoimmunedara - Tumblr Blog

disturbedlolita

whoisleo

1st-1

me when my eczema flares up during fall weather change.

#virsces #model #music #musician #eczema

do you surf personally?

Yes! I surf a 9’ 6” Strive longboard and a 7’ 6” Al Merrick gun. That’s the one you see in the picture. I wasn’t able to surf for a long time due to my illness so I’m just now getting back out there. 😁

horrifying

sophie-duke-blog

make waves 🌊

#surfing #surfer #surf #surfergirl #surfgirl #hurley #almerrick #santacruz #ocean #california #californiagirl #waves #summer #cali

Here is my scar after my surgery from last December at Stanford to remove my first rib for my Venous Thoracic Outlet Syndrome (which was what was causing my clots all a long). It is very rare, and very hard to diagnose (as it took almost two years for them to find) but I’m very greatful that they did.

My first rib was causing compression on my subclavian vein, causing the blockage.

Crazy.

Each day is a blessing.

#scars #scar #vtos #tos #thoracicoutletsyndrome #venousthoracicoutleysyndrome #ribresection

Ever since my multiple unproked DVTs, I had to be on blood thinners for a long time. But back in January they found my Venous Thoracic Outlet Syndrome. Stanford was able to remove my first rib that was causing the compression, and snap- no more clots!

Since I’ve been off blood thinners, I’ve been trying to get back out to the ocean as much as possible. I’m so out of shape, and it’s going to take a lot of conditioning to get me to where I need to be post surgey(ies).

One wave at a time 🤙🏻

#surf #surfer #spoonie #surfing #eczema #dvt #chronicillness #tos #vtos

makingmyinvisiblevisible

You know you have a chronic illness when…

You use the word ‘fatigued’ to describe how you feel when ‘normal people’ use the word ‘tired’…

In feeling left behind due to illness... your journey is NOT over.

Art and poetry repost by the strong @p.bodii , thank you for this gentle reminder today.

.

Lately I have felt as if I am being left behind. One of my last emails sent to my amazing doctor at Stanford (God bless his soul) was “I feel like I’m being pushed aside”. As I said that, I imagined my team of doctors putting me on a raft and pushing me out into sea with a forecast of a perfect storm brewing. Would I make it through the storm alone on my little wooden raft without my team of Stanford Doctors? They are unable to give me a firm diagnosis of #EGPA. I am on the spectrum, but it’s not enough data to confidently say I do or don’t have it. So I’m left in the in-between again. #TheUnknown. And anyone who knows me knows that I will fiercely resist against the unknown.

.

As humans, we want answers. We want results, instant satisfaction and explanations as to why things aren’t going as planned. I was always sick as a kid, but never did I believe that my diseases would hold me back from joy. It’s like now that I’m at 30 and haven’t had the strength to conquer my dreams, I feel as if my journey in life is over. But that’s the thing… my journey never ends; it isn’t over yet. I can persevere and fight this good fight.

.

This morning when I woke up, I was stiff and in pain, and so tired. I just wanted to sleep for another 10+ hours. But something in my head said “Lord, give me the strength to get up and go to work.” And I did it. I got up, I threw my hair in a ponytail, looked myself in the mirror and heard His still small voice. “I’ve got you.” Driving to work I kept telling myself, “I can do all things through Christ who strengthens me.” My journey isn’t over yet, because He’s got plans. Plans to give me HOPE & a FUTURE. Despite #chronicillness, my #dreams & goals can be met.

.

Perhaps I was put into this body of illness because it would change me for the better. I am being broken down into dust so that I can be made into clay, and formed by the potter into something beautiful and meaningful. Maybe I’ll be able to help others who sometimes feel as if they are being pushed aside or left behind. I have hope.