Dear Sarcoidosis

Dear Sarcoidosis

By Kath Gifford

Eighteen months ago, I had never heard of you, and now you dominate my life.  My lifestyle of vegan, non-drinking, yoga practising and gym going kept you suppressed, until a year of grief and stress, and the joyous co-incidence of menopause, caused you to rear your interfering head.

Many people never even know you are there, you lurk, hidden, often confusing with your random symptoms, many a time mis-spelt and mis-diagnosed, but ready to pounce.

As you are rare, I suddenly became interesting and complicated to the medical profession.  I’m glad someone thinks so, maybe I could put it on my tombstone.  ‘We’ve got a Sarcky’ obviously rippled around the wards, until all trainee doctors were sent to my bed to have a go at their diagnostic skills.

Thanks for making me learn how to use a walking stick and observe the new reactions of the public to this.  And for the nodules of inflammation in my brain, my spine, my chest, my skin – so far, these Granulomas I call Gremlins, hope you don’t mind!  Alternative therapies advise me to visualise them being eaten by Pac-Men.  But they are getting in the way of communication to my legs, my balance, and varying bodily functions, and just for fun you like to make my face twitch too with that curious sensation like when it comes back to life slowly after a dental injection, and thanks for that symptom on the day it was soup for dinner in the hospital!

Oh, and the pills I must take to just about contain you that make me fat (5 stones increase before I could turn the tide), moon faced, depressed, that made me high then low, and have no immunity – great timing with Covid, so thanks for the shielding too. On the Sarcoidosis Facebook support group, Prednisolone are known as the Devil’s Tic Tacs.  And then all the other rattle of pills to counteract the side effects, and the blood tests to make sure the side effects aren’t causing new problems.   And then the other tests: MRI scans, CT scans, PET scans where you have to avoid pregnant women and children after, as you are radio-active – I was almost disappointed not to glow.  Then more intrusively the EBUS lung biopsy and lumbar puncture: camera and scraping tool down your throat how I imagine waterboarding feels, and foetally curling up listening to the doctor ask for a bigger needle.  I don’t think the poor Egyptian doctor quite got my sense of humour when I said it must be like trying to get a camel through the eye of a needle, after four failed attempts.  Thankfully a positive diagnosis from a skin biopsy saved me a second round of poking around in my spine, next time would have been with laser guidance making the mission of checking the spinal fluid for protein levels potentially feel like part of a video game.

The brain fog and fatigue are fun too.  ‘It’s Methotrexate Monday’ being a completely understood household excuse now.

But you weren’t Cancer.  So I’m supposed to be relieved I only have a rare, frequently misunderstood disorder of the immune system, but am still alive.

 

Sarcastically Yours

 

Kath Gifford

Living with Pulmonary & Neurological Sarcoidosis

 

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