At some point in my health journey I have reached a place where I no longer want to go to doctors and trial new drugs. I have become tired of the revolving door and no real advancements. The painful merry-go-round.
Its heartbreaking and tedious!
And although I possibly should see a doctor when flares happen or my conditions changes, or worsens, I don’t!
I call it self managing while others may wish to call it something else. Either way I feel I am no better off no matter which way I go.
I have several drugs at my disposal that I increase or decrease myself and I have become my own caretaker. I have been to enough rodeos with these diseases that I know how they go… I know what the falls and kicks are like. Nothing frightens me anymore!
I have told my husband that if I was on my last gasp I would rather take my last breath as a free woman than tied to a hospital bed and alone. That’s how I truly feel now and I hope that he would respect my wishes. In the meantime I will live and suffer all I can. Alone. That’s my choice.
This may be quite contradictory to many of my fellow fighters and I do not offer this as medical advice, but I believe we reach a point where we must decide for ourselves how we wish to proceed.
Apart from my blog, I rarely share my reality and my thoughts about my autoimmune battles anymore. This is the last vestige of my journey. Only my husband and I may ever really know what it’s like.
I know that many have tired of my sharing so I have decided not to anymore.
My current mind set is that after many years of doctors, tests, meds, trials, tears and anguish I have had my share of opinions, trials and errors, so I would rather take what’s coming on my own terms. It has not been an overnight decision!
Only someone who has knowledge of these challenges may ever really understand some of the obstacles I have faced, while others will simply wish to ignore and turn their backs. It no longer matters to me which camp people belong to. I don’t judge.
There is a freedom in that too!
I think the difficulty in trying to be an advocate is becoming tired and burnt out from trying to make a difference and facing a wall of indifference. I suspect I may have hit that wall. Hard.
Even the greatest and strongest walls will crumble in time.
As a project manager I spent enough of my career trouble shooting and trying to solve issues but I never imagined that I would be my last project! The longest and hardest project of my life!! … and I have had some nightmare projects, trust me.
So I Self Manage now. I do my best. I manage the moments and I surrender to whatever awaits me and I hope that I will have enough to face it everyday.