A Leap of faith. Namaste.

ali 090This serves as a reminder as I take a leap of faith.

Some decisions require lots of thought others very little indeed. When I first got sick, some 6 years ago all I wanted to do was get better and have the doctors make whatever it was go away. Chronic illness cares little for selfish desires of either the patient or the doctor.

Chronic illness can be insidious but whereas there can be some removal or cutting out of some disease and illness this is not usually the case with auto-immune diseases, you could cut away and chop and it would often make very little difference and they are still poorly understood in some respects despite huge advances in treatment and therapy. I hope that one day breakthrough treatments with stem cell therapy might offer hope to the millions of sufferers worldwide of diseases like RA, Diabetes, Lupus, Sjogrens, Crohns, Ulcerative colitis, Psoriasis…etc etc.

We tried most drugs and it took many many years, there is no panacea, there is no quick fix, try this one for 6 months, mix it with that one for another six months.. and then you start running our of options, or the options become less and less attractive. there are folk out there who rattle on a daily basis, 8 of this, a short of that, this to counter this effect etc. Many of the drugs used in auto-immune disease therapy are cytotoxic which is effectively chemotherapy and people are taking these drugs for years and years. The side effects can be awful, the usual rashes and allergies, hair loss, nausea, diarrhoea, sun sensitivity, higher risk and probability of cancer X cancer Y and cancer Z. memory loss, palpitations, neural damage, multiple sclerosis, and fatal infections of relatively harmless bacterial and fungal infections. This is how it is written there is no sugar coating.

The chances or statistics for these rare events mean that most of us press on and try to give ourselves a health break, a chance to dampen the disease down a hope that it will completely disappear, but sometimes we do become the statistic. The infections I have had in my sphenoid sinus and other sinuses has likely proliferated as a result of my very weakened immune system from the biologic therapies that  have used even though I stopped all medications last July when I realised there was a real issue.

Three weeks on from high-risk surgery and infection is back and not paying any attention to the limited antibiotics I can use (drug allergies). Funny though it has simplified what was going to be a difficult decision. Today I met with the rheumatologist with initially hoping to use another biologic. The latest infection mean that this is not an option and have made it easy for both the rheumatologist and I to see that the only way forward at the moment is a relatively drug-free way, whatever the costs and consequences of that decision may be. I am fortunate that I am at a point in my life where I can face this option with courage instead of fear, and it might change again in the future. But for now, infection is not my friend and the risks associated with drug treatment outweigh any possible benefit to my rheumatoid arthritis. So we are bare-back riding into the night. it is a leap of faith. i have put the photo at the top to remind me of the consequences of infection.

 

 

 

Author: alisonhankinson

I am a school teacher and a mum and a red cosmic skywalker, and sometimes a netball coach...but beneath it all I am a writer...

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