For those of you out there who think that treating Autoimmune illnesses is simple, think again.
In a recent visit with my Neurologist I can remember him talking about the range of treatments that doctors offer Autoimmune patients and likened it to “… spraying and praying…” Implying that they have a limited number of medications that they will ‘trial’ on each patient in the ‘hope’ that it will deliver some helpful result; not ever really certain that it will in fact work. They prescribe… and they watch… and they wait…
Almost each drug or protocol we use, no matter how awful or devastating the side effects, we take in the ‘hope’ that it might help us, even in some small way. You could say we ‘…grope and we hope…’ for help.
Many of us feel so desperate and frustrated that we will literally try anything!
I personally have tried a number of DMARDs, DMADs, injections, IVs, steriods and Biologics in the ‘hope’ that it will lead to a better quality of life, but I often find that the side effects can be worse, or at least far too taxing to bare, than the original problems.
Thus, not only am I dealing with a laundry list of problems and challenges, I have to add another long list of painful side effects to the mix. Serious side effects too. ie vommiting, migraines, fever, vertigo, gastro, terrible pain, etc… Obviously, I can not sustain this and I have had to stop these various treatments.
Sometimes you swap one set of problems for a whole new list… but they are NOT cures. None of the current medicines or protocols are ‘cures’ for any Autoimmune diseases.
Ask any specialist and they will admit that their main focus is not to ‘cure’ the condition but to slow the disease’s activity or progression to a point where you can have a better quality of life or be able to cope with the symptoms you are experiencing.
‘Disease management’ is a popular concept amongst the various specialists but there is no way of knowing who will be able to achieve this, and it can change so quickly and often…
There are some Autoimmune fighters who, having been diagnosed earlier, have been able to manage their disease quite well and remain ‘high functioning’, however there are just as many who find themselves severely affected and limited in their functionality. Some even find them selves enduring repeated and prolonged ‘flares’ with little relief and many, many challenges.
No amount of positivity or positive thinking is going to change your medications effectiveness. I only wish it could as I would have been well and truly cured by now!
But we continue to ‘Spray and Pray’ because we want help and we desperately want relief. Even if that comes at a painful and difficult cost.
To those who have little to no understanding of why Autoimmune sufferers 1. Have not been cured yet despite many different drugs 2. Are still struggling with their diseases; still 3. Experience terrible side effects 4. Decide to stop taking the various medications or 5. Feel totally frustrated and like a human guinea pig… its because we have struggled with some very difficult and painful drugs and had to pick up the pieces and deal with the fall out from each drug we have trialed.
Many of the strong drugs we are offered are all aimed at shutting down our over active and destructive immune system. But when we use the ‘scorched earth’ approach to our immune system we leave ourselves open and exposed to any and all illnesses out there. A simple flu can become a deadly bout of pneumonia. A small cut can quickly become infected. And the steroids we take to help ease the pain, is also capable of slowly destroying our bones, our organs and even causing psychotic episodes… But that is how desperate we are to get pain and relief. That is how desperate we are to have a life. And that is how desperate we are to stay in your lives and be valued family members and friends.
Hence many of us, even celebrities, have been lost due to ‘complications’ caused by our Autoimmune conditions ie Glenn Frey, Bernie Mac and Harold Ramis. Because our treatments have left us terribly exposed and vulnerable, or have damaged our organs beyond repair.
However, hopefully one day we wont have to ‘spray and pray’ and we will have the understanding and support of the rest of the world while we wait for that precious cure.