It has been two months since my last treatment. After I told my doctors that I wanted to stop them because of the meningitis that had plagued me for the past three years, the immune doc convinced to think about doing a weekly shot instead of a monthly IV. At first I agreed, but in my heart it just didn't feel right.
When I made the initial decision to stop I felt the weight of the world leave my shoulders.......but as soon as I said that I would do the weekly subq that sinking feeling hit me again. Rick and I had long talks about it all last week. We called our insurance company and talked with them at length about my past three years with IVIG treatments and all the side effects that I had dealt with. We asked if I could take a break, a vacation if you will and would I be penalized if wanted/needed to start treatment again.
They assured us, I would not.
I notified my doctor that I would be taking a break. I haven't heard anything from him, but in all fairness he is a busy man. My decision was not made lightly, I made pro and con lists, I read every bit of information I could get my hands and I believe my decision was the right one for me.
Three years of meningitis has taken its toll, on my body and spirit. I am not sure where my path will take me, but I know that when it comes to your health, to your health care.......you cannot go on blind trust. You have to take responsibility, do your homework, learn as much as possible about your disease. You have to also learn about treatments, medicines and all the good, the bad and the ugly that come with it. You have to stand up for yourself, ask questions, and search for answers.
These past three years in the big green chair have been many things.......an education, an emotional roller coaster, the opportunity to see the best and the worst of our health care system. I know there is no cure for what ails me, I understand that management is the most I can hope for and that on down the road, the treatments that I currently have turned my back on may be my only choice. But there came a time when enough was enough at least for now and quality of life was my most important goal.