Monday, March 13, 2017

palliative care-NOBODY PANIC

I had my palliative care evaluation today. Let me explain why you don't need to panic. I am not dying, this is not hospice. Two very different things. So stop it.
Palliative care by definition is specialized medical care for people with a serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. I so far have 3 illnesses with no cure and each one carries with it a different set of symptoms. My new care team is composed of my own nurse practitioner...(NP), social worker and a physician they have on staff. They work together with my current doctors on symptom management but they also can prescribe new medications that have the potential of helping me be more comfortable. There main focus is helping me manage all this.
This evaluation could not have gone any better than it did. God has His mighty and gentle hand on my life, guiding me through this journey and it is extra special when you can obviously SEE IT go down. One of my diseases is mast cell activation syndrome which is an autoimmune disease that is not well known and when I said I have an appointment with an immunologist on the 23rd about it my nurse practitioner said she used to work for an immunologist and is familiar with it and the treatment options so we discussed those a little bit  but we won't try any treatments until I see the doctor. BUT SHE KNEW WHAT IT IS GUYS. Providential much?
As we discussed things we had the radio playing in the background to Joy FM and the NP said she loves this station. Something so simple sent a wave of hope and peace over me that I haven't felt in a long time. This is the help I have been waiting for. Someone who loves Jesus and is devoted to making the best of this situation by being "in my corner"  in the medical world. Someone to stick up for me and will do whatever it takes to help and be here for me, even trying new medications that my current doctors won't touch as they are experimental. I have been thrown around to so so so many doctors that either say they can't help me or develop ego's and think  everything I have been doing is all kinds of wrong and should never have happened and they will only accept me as a patient if I do what they say.
Help. I have help jumping through hoops, sifting through doctor opinions, and making educated choices. I have been putting everything I have into being my own advocate and fighting for every part of my life and treatment for so long that I didn't know the toll it was taking on my already fragile body. A weight that I didn't know existed was lifted from me today. It may have taken 3 years for me to begin to give this to God all while I ignored the fact that He has been waiting patiently for me this whole time. My soul was reunited with the God of this valley no thanks to me. Faithful.


Jeremiah 29:11--For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.


He wasn't lying when He said this. He just proved it.  I'm clinging to it right now as I share with you the other part of my day that contains a prayer request. About an hour after they left I got a phone call that my blood work I had drawn the other day came back showing a potential infection somewhere in my body and I have to have further testing tomorrow. I have my pre-op done on Wednesday and I ask for prayer that whatever my body is doing does not prevent me from being cleared.


"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
They say it only takes a little faith
To move a mountain
Well good thing
A little faith is all I have, right now
But God, when You choose
To leave mountains unmovable
Oh give me the strength to be able to sing
It is well with my soul"--mercy me

 



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