Hey all,
Thought I would do a quick update here. So if you read my the last blog post I did a year ago, you can see that I caved in and went back to the steroids! Basically I was really struggling and wanted some relief. And I wanted to see what happened if I tried only really low doses of prednisone.. But boy, was that a huge mistake...!
Don't do it, do let the doctors talk you into going back to the steroids. I was on low doses of prednisone for about 6 months, plus using hydrocortisone here and there and it f'ed me up big time... I stopped the low dose steroids around July 2017 because I just kept getting worse and worse. Way worse then when I was 3 years into my first withdraw. So I knew steroids is not the answer and never will be the answer...
So I stopped the steroids (again!) July 2017. I knew I needed to go through withdraw again, so I moved to a tropical environment in Medellin, Colombia for 5 months because I know I do better where there is sun and humidity. And boy, did I go through total withdraw again. The oozing started again, then bright red skin, the intense flaking, the pain! Oh man fuck steroids...
Again it took months before my skin started showing signs of healing again. Around December things stated to improve for me again and I moved back to my parents house in Seattle. This is 6 months after stopping the low dose steroids. I then decided to take a trip to Miami Florida where there is plenty of sun and salt water. I wanted to try swimming in the ocean because I have been doing epsom salts baths at home and it seemed to help quite a bit. You have to make sure they are pure epsom salts and not mixed with any fragrance or anything. Also rinsing off with cold water helps a bunch too.
And boy, the salt water and sun here in Miami is freaking amazing! It has practically cleared me. My skin is no longer bright red and I feel the best I have in 5 years. It took about 5 swims and laying in the sun for an hour or two. The first swim freaking burns like hell... but after that it's bearable the next times.
I was looking at myself in the mirror the other day and couldn't believe this was my body. Not a scratch, with regular tone skin and no flaking. And even started crying and thanking god for this temporary relief. I could literally feel the salt water burning the eczema out, and my lymph nodes getting smaller and less swollen. My energy returned, I felt alive again! So I think I need to live on the ocean here in the tropics somewhere. As the salt water/ ocean is a miracle worker.
I will try to post pictures here soon.
Good luck all, and swim in the Ocean!
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