Lee, don't give up whatever you do. I know it is hard but, honestly, you can and you will get passed all of this, and better days are ahead. The medical field sucks at times. My oncologist said, once to me, that everything about my lymphoma had been weird. THANKS! I felt like saying. Instead, I asked him what exactly he meant. I was so stunned that day, I didn't ask him what he meant until, the next visit. What he meant was I have perplexed the medical field. And, AND, if I was quiet about things, I probably would be shoved in some remote corner of the office and forgotten about. Mine is a hard case. They have to confer with other doctors in their own field. I actually... Lee, got to medical conferences. I never miss a one. I want to know what they are doing in this world I exist in, and want to overcome. So hang in there, and sometimes, Lee, you got to SPEAK UP to them. Loud. Not rude, not obnoxious, but let them know, you are there, you are listening, you are not going to give up. If they sense you are giving up, they will too. No doubt about that Lee, reason, they want to spend time, their time, only on those willing to go the distance. I go the distance. They know that. I TELL them, LEE, what drugs I want to be on, LOL... AND, they listen. Dig that.
You got to be your own advocate. AND, whatever you do, if anyone is giving you bad advice, if something doesn't feel right in what they are saying, take it to the bank that you are right, and it isn't. Listen to that little inner voice, that gut feeling. Go with it.
I will ask my buddy where he gets his meds at over the net, etc. He is on several different kinds.
Study up on what is ailing you. Know about all you can, whether it is your health, or the medical field and insurances because, this way, you will know when and if someone is blowing smoke in the wrong direction on you.
I am alive Lee. Because... like my dad used to say, " you are smarter than you look."
I know you want to be grateful, and so do I, but, you got to remember, you got to look out for number 1. They are very busy people, and I try seriously, to reduce the amount of time my doctors got to spend with me. I got a neurosurgeon, oncologist, urologist, military surgeon for other body parts than my brain, lol, a gny, and, I get second opinions.... and, I send things ( slides and blocks) out to NY for a second opinion on anything removed from my body. It could be a pimple or a bad node, it gets sent out. I do not tolerate mistakes from pathology anymore.
You can get the best medical care in the world, but, unless you are ontop of it all, it is worthless. People make mistakes. That one doctor who will not prescribe the same meds, you need another talk with her. And, the doctor who prescribes them. Remember Lee, the squeaky wheel get the grease.
Just squeak firmly, but, nicely. It is your life, and we only go around once.
And, I can squeak quite nicely, because I spent many years on Rituxan, which is made from mouse antibodies, lol.
I didn't plan on being knowledgeable about disease, the medical field, insurances, none of it. I was thrown into it headfirst in the deep end of the pool. It was either sink or swim. And, I swim.
Speak up. Honestly, those in charge expect it.