Mike’s EGPA/CSS story June 2016
Mike’s Eosinophilic Granulomatosis with Polyangiitis (EPGA) / Churg Strauss Vasculitis (CSS) Story
I was born in Bristol UK in 1952, a child of the baby boom. Life was simple and basic, no electronic devices, no fridge or freezer, no central heating but somehow none of this was really important. Us ‘boomers’ were all in the same boat and looked as scruffy as each other. We had a lot of good times!
This picture shows me with some of my mates. I am second from left and owned my own belt. The kid with the bike had the only one in the neighbourhood, he was very popular!
Thinking back, there were also many hazards which, with the benefit of hindsight I would have avoided. Being constantly in cigarette smoke filled environments, walking in the smog, playing with asbestos and so on.
I dread to think of what might have happened in a worst case scenario with some games we played, one of which involved throwing a dart over the house, for your mate to catch it on a lump of wood on the other side! Play stopped when a dart finally embedded itself in my leg!
I was generally a healthy child, though I did have hay fever which none of my friends had even heard of! It was a miserable few months every year until in adulthood when medication caught up and finally had some effect.
Otherwise, through my adult life up to around 55, I rarely visited the doctors but at about this time I started getting very bad stomach cramps which were not resolved. Then during a trip to India I caught a horrible virus that left me with a permanent cough, lasting several years and morphing slowly into uncontrollable asthma. I was put on prednisolone, which had immediate effect but when the drug was stopped, the asthma immediately returned. Unbelievable asthma, which had me wondering on many occasions where the next breath would come from.
I got on a steroid cycle (3 weeks on, 2 weeks off) for 18 months until finally EGPA reared its ugly head and was diagnosed in Aug 2014. Thankfully treatment was swift but I was left with fluid problems resulting in 2 heart operations and neuropathy in hands, legs and feet.. The stomach cramps disappeared at around the time the steroid regime started, so maybe that was part of it.
My life until that point had been hectic and energetic but EGPA put me in a wheelchair and took away the dexterity in my hands so, even though I am now mobile again, things had to change significantly.
I have had to adapt to a more sedentary lifestyle, doing things such as web site development and digital art. Occasional cooking and short sessions of gardening are at the extreme end of my physical activity.
I am slowly adding things to the list of what I can now do, with or without aids, it all counts. Of course it’s a struggle but all of us with EGPA live with this, many having much bigger challenges than me!
The hardest thing for me to do is laugh at myself but it’s important to me to be able to do that. Laughter is my remedy for this mad condition and my wife and family are great at helping me not only to do that but to feel ‘normal’.
I have tried to make the most of a bad situation and like the kids of the 50s find myself in the same boat as many others, whether EGPA or any other horrible condition.
Sharing experiences with people in similar situations has been immensely helpful, not only in various social media groups but also on web sites like Karen In Wonderland .
This second picture, though virtual, sums up the feeling of support from so many lovely people, I cannot imagine how all the issues could be faced without the help and support of so many. I would like to put everyone on the picture but consider yourself included in any case.
I will not have EGPA for life, even though there is no cure, because I already had a large slice of life before it struck, for which I am grateful. Also I don’t consider myself particularly unlucky, as having a rare disease is actually quite common.
I am approaching 2 years since diagnosis and am happy for every day I wrench back from this horrible disease.
FYI: Mike authors information pages for EGPA/CSS patients. His pages have a calming effect when confronted with so many questions and fears about EGPA/CSS.
For more information:
by karen in wonderland