Hello All,
(www.livelifehappy.com)
Many of our members are severely beaten down by the symptoms involved in Periodic Paralysis. The doctors do not understand nor do they seem to care, family members are not supportive and friends just do not get it. Many are depressed and find it difficult to cope with the daily things in their lives. Most people do not understand what we face on a daily basis, except those of us going through it. We have each other and we support each other. Due to this I post inspirational quotes everyday on our PPN Support and Education Group to show my support and how much I care and how thankful I am to have each them on my life. I post quotes about hope, caring, support, understanding and friendship.
Yesterday I posted, “Sometimes in life we just need someone who will be there for us. Someone who will listen. Someone who will understand us.” In response to this one of our members, Maureen, wrote the following:
Many of our members are severely beaten down by the symptoms involved in Periodic Paralysis. The doctors do not understand nor do they seem to care, family members are not supportive and friends just do not get it. Many are depressed and find it difficult to cope with the daily things in their lives. Most people do not understand what we face on a daily basis, except those of us going through it. We have each other and we support each other. Due to this I post inspirational quotes everyday on our PPN Support and Education Group to show my support and how much I care and how thankful I am to have each them on my life. I post quotes about hope, caring, support, understanding and friendship.
Yesterday I posted, “Sometimes in life we just need someone who will be there for us. Someone who will listen. Someone who will understand us.” In response to this one of our members, Maureen, wrote the following:
I LOVE what this says and expresses about one of our fundamental needs. And it sure would be 'icing on the cake' 'dream wish' if a 'someone' would be physician who would say something like, "I don't know what's going on, but I'll be here for you..." (And then they describe what 'being there for you' means to them, so we'd know what they are thinking and what 'criteria' they have in mind and how we are to implement this with a gatekeeper/scheduler without trying to seem like a prima donna/drama queen), then go on to say, "...and hopefully with time we'll get closer to some answers to help manage and better yet, perhaps arrive at an accurate diagnosis. I realize that I can't know everything and it wouldn't be realistic for you to expect that, so if you won't be disappointed in me for not being able to give you an answer, I can tell you that I'll do my best to try to listen to your concerns because I WANT you to feel that you can be open with me. I want you to feel comfortable to tell me what you have to say and what you think and want me to consider because you will have the most at stake motivating you to look for answers that I can't be on top of since so much information multiplies and inundates physicians that it isn't possible to be on top of everything. I may not understand WHAT is going on, but I will do my best to BE understanding of what you are going through..."
Unrealistic desire, but that could go SO far…
Thank you Maureen. We all wish
we had a doctor who would treat us like that; a doctor who is honest and
willing to help; a doctor who cares about us and is willing to learn about
Periodic Paralysis; a doctor willing to admit he is fallible; a doctor who is
willing to admit she is may not know everything; a doctor who understands how
sick we are and what we have been through; a doctor who listens; a doctor who
sees us a human being first and as a patient second; a doctor who lives by the
Hippocratic oath he or she pledged; a doctor who gives us HOPE.
How wonderful that would be…
Until later…
Once in a while some of us get very lucky and find exactly that. Big shout out to Dr. Rose Wenrich of Family Physicians in Wabash Indiana. The very first physician to give me affirmation that all was not in my head. You proved some physicians are willing to learn and do the very best you can to assist a Zebra among the horses. You Rock.. as do you Maureen and Susan for so eloquently stating exactly what we zebras need.
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