My disease defines me?

Summary of this post
My personal experience as a Henoch-Schonlein Purpura sufferer, with multiple relapses that involve kidneys, skin, gastrointestinal tract and joints. Developing Multiple Chemical sensitivities and the 9 year on-going (getting there) struggle to wean off steroids. An upbeat, positive overview.


About me! me! me!
I am, by occupation, an entomologist (see what I do for a living at antomologist.blogspot.com). However, my primary duty is not to cure insects as a medical doctor would. Rather, my job is to protect trees from insects that like to eat those trees. Thus sometimes insects die in the line of duty (my line of duty, that is).


I am also a Henoch-Schonlein Purpura (HSP) 'sufferer', and have been so for the past nine years. I was told
this is a rare auto-immune disease somewhat more severe than IgA Nephropathy (IGAN) and Systemic Lupus Erythematosus (SLE). I remember reading somewhere, a person with skin rashes (purpura), tummy (colitis) and joint pains (osteoarthritis) and kidney problems (nephrotic syndrome) when first diagnosed with HSP, has ten years till kidney failure (End Stage Renal Failure), on average.


My kidney function is good. Hopefully it has not deteriorated since my kidney biopsy in 1999 showed focal segmental glomerulosclerosis with minimal change nephropathy.


I've always taken an active role in managing my illness and I believe after nine years of 'experimenting' with wildly varied diets in repeated (and failed) attempts to wean off the medications (cyclosporin, prednisone, hydrocortisone, etc)... I believe ... I am close to succeeding.


All these years - one-third of my life - my focus has been on getting better. Everything (almost) revolves around this. I don't like it that this 'HSP' defines the person I am right now. I also don't like this awful suspicion that my 'hypersensitivity condition' (as my nephrologist puts it) is Multiple Chemical Sensitivities (MCS), which is literally being 'allergic' to the 21st century.


I am doing (most) things right! I am down to my lowest dose of hydrocortisone ever. I was never able to take less than 30 mg a day without relapsing. Until a couple of months ago. I started a strict lifestyle regimen in October 2007. By November 2007 I successfully reduced to 20 mg (equivalent to 5 mg Prednisone), and using a specific tapering schedule (that I'll talk about in a later post) I was down to 10 mg by January 2008. At that time, I was feeling a little tired in the afternoons but my urine dipsticks showed no proteinuria and all was well with the world.


Unfortunately, I experienced a small and temporary setback these last three weeks. I caught the flu ('upper respiratory tract infection') and the overall effect of not sleeping well and feeling lousy triggered off one of those relapses (nephrotic syndrome). I had to bump the dose up to 120 mg for two days until the urine dipstick showed no more proteinuria. I reduced by 20 mg a day after that, and am now back down to 15 mg. Tired but otherwise good, and ready to try again.


Why I am writing this
I wanted to get this post out because I know that what I know may be able to help someone out there. I may not have the answer for you, but I am close to finding my own solution for this problem that the doctors have found no cure. And this 'home-brewed' solution is borne of my own observations, scouring the internet and poring over countless medical texts and journals to fit the pieces of the puzzle together, and by living with this disease. All of what I do is geared toward supporting my adrenal glands. I sleep a lot, I manage stress, I eat on time, I eat no carbohydrates or sugar. I am surrounded by love and family and people who are positive, and I love my job tremendously.


Ah my bedtime is coming up (9.30 pm). Between 11 pm and 1 am, that's when the adrenal glands (which in my case have been suppressed after long-term steroids and slightly atrophied from lack of use) are most active helping the body repair itself. So I had better be asleep by then!


I'll end with this: A healthy man has many desires, but a sick man has only one.



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xo Gracie