A quick decline....

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I ‘think’ my Sarcoidosis started in 2013. That’s when I had my first bout of debilitating fatigue and profound weakness, after getting rabies shots and IVIG, and then whooping cough. I’d never felt that way before... it lasted a few months and then I went on my merry way.
At the end of 2015 I experienced a sudden loss of vision, just woke up one day and could barely see. I took myself off to the emergency eye clinic we have here in Winnipeg and the Drs there saw that I had granulomas in both my eyes and Uveitis. It’s a teaching school, so they did all sorts of tests to try and figure out why I’d suddenly come down with this condition and I remember them explaining the need for me to have an X-ray to rule out a very unlikely diagnosis of Sarcoidosis. Well, after the X-ray, and some blood work, they determined I most likely had Sarcoidosis in my lungs and sent me off to a respirologist who confirmed it with a CT scan.
I started prednisone tablets, steroid eye drops & an eye ointment right away.
It took a long time (months) for the eyes to resolve themselves, although my lungs got better quickly.
Then we discovered that I am very sensitive to prednisone. Weaning off took much longer than anticipated, and I started experiencing complications, like hyperhydrosis, neuropathy, diabetes, gastroparesis, heart problems, immense fatigue, muscle wasting, skin thinning, weight gain, moon face, high blood pressure, an elevated heart rate, and some random anaphylactic reaction to things I’d never been allergic to before. A lot of the complications came from the diabetes.
As I weaned off the prednisone, most of the complications eased off or disappeared completely. I was 100% off of Prednisone in March 2017, for 7 weeks. Yes, just seven weeks...
That’s how long it took for the granulomas to come back in my eyes and my lungs.
I went back on Prednisone, but this time the complications came back far stronger, much more intensely and haven’t gone away.
It’s October 2018 and I am still weaning off of the Prednisone. My Dr thinks I’ve become dependent on it, and a CT scan to see if my adrenal and pituitary glands have atrophied and basically died is coming up in a few weeks. I may have to stay on steroids the rest of my life... I’m still trying to wean off of them though. I’m at 9mg per day and waiting to see if I crash at this dose. If I can hold on, I’ll go down to 8mg in a few weeks or a month.
I’m scared. If my adrenal system, or HPA Axis, is toast, I’ll be diagnosed with Addison’s and have to worry about this the rest of my life. I’m hoping the Sarcoidosis won’t come back as I go down in Prednisone, but I’m honestly not that hopeful. The last time I came off Prednisone, the Sarc came back with a vengeance, and I’m not nearly as healthy now as I was then. We’ll see.
I’m trying to take care of my emotional health as well, but it’s hard. I don’t get out much, I had to quit the one volunteer position I had as a suicide line / sexual assault counselor, because I just couldnt make it to my shifts on a consistent and reliable basis. I feel like my world is becoming smaller and smaller and smaller...
So having recognized my mental health is not so good right now, I’ve signed up for some classes at the local CMHA (Cdn Mental Health Assoc), and I’ve gotten myself on a number of waiting lists for one-on-one counselling, and I’ve made some baby steps to reach out to friends.
And I’ve started the legwork to start a non-profit Arts Centre (glass blowing, ceramics, metal) that runs off of landfill gas aka methane. It’s been a dream for a long time and I’m finally gathering the troops who want to help, and getting it going!

So all is not well, and all is not awful. I’m trying to learn how to live with my new reality, and still be happy. I had a really exciting life before I got sick. I traveled, I made art around the world and I had a great time doing it. I think I can get back to experiencing that amount of joy in my life. I just need to find new ways of doing it...