Thursday, April 30, 2009

Many things learned....again.

So many things swirl through my mind and I wonder sometimes at the wisdom or need to write them down.  Many of these thoughts disappear into the days that are screaming past and other keep swirling around the back of my mind.  

First - this pcr waiting time has been so peaceful and smooth..... I have literally not worried much at all and even today when Steven went to the doc to get those results, I really did not even feel any hairs turning gray!  He will bring me the results on Saturday and I have decided not to call him and ask for the actual number - Saturday is close enough  :)  Sometime I have to turn it all over, and this is a good start.  

This past week I read about another person who died despite trying everything to get rid of cml.  It hurts.  Its scary.  I hate it.  And yet its reality and to shy away from it just does not help at all.. so I looked at it squarely and then flipped through Steven's folder of all his results, some of his recent photos and I felt better again.

I had a conversation with someone this past week where we were discussing natural healing of diseases, cancer included. After hearing that I was not willing to jump in boots and all without doing much more of my own research and get Steven doing what this person felt would cure him,  this person said that ' most caregivers would want to help the person they are caregiver to'.  Well, I know absolutely that this person did not mean it in a nasty, mean or derogatory way - but rather that they are very intense and excited about their discovery, belief and are perhaps frustrated at my lack of equal enthusiasm.  But it hurt.  Of course I want what is best for Steven, but I am not ready to try to get him to try something without first finding out all angles about it.  I know enough to realize that different diseases react differently to even natural products........... and, well now I feel as if I am defending myself again, but thats what that comment did to me.. made me justify why I was not getting Steven "to be healed".  Sigh. 

I am not really a caregiver to Steven - he really does not need one but I do keep tabs on everything for him and share the stuff that I know is relevant or helpful.  Does not sharing this 'natural healing' information make me less concerned or something? I don't think so, but it does niggle in my mind.

Today I also got a serious lesson is the absolute necessity of getting copies of medical records as the results come in as well as being 110% informed about results and what tests are done.  I had gone for some basic testing a few weeks ago, got the response of  "all clear" and had I been one of the majority of people today, I would have left it right there.  Not only was the 'all clear' not correct (nothing serious at all), but I was not given the option of taking meds for the minor problem and only discovered this information when visiting a different doctor today. Talk about an instant 'blood boil" 

If this had happened to me three years ago, I would not have done anything about it.  I would have just been quietly angry and moved right on, probably changing doctors, again, and losing even more faith in the medical world.  But I did not do this this time, having learned so much since Steven's diagnosis, I headed to the other doctors office and voiced my anger to both the doctor and her nurse.  I must say that I was really pleasantly surprised at their response and will stay with them.  I know that the communication problem was not on purpose and it definitely did not seem to be pure negligence as I had heard only good about them before going there and felt totally comfortable with them both.  I understand that life happens and sometimes things come together to create a mess like it did with my results.  But happen it did.

I do believe that because I went down to talk to them that this will help prevent it happening again and I seriously believe that we should all be very comfortable in doing this when we are unhappy with something our doctor says or does.  How else will these people that we entrust our lives with, know how we are feeling?  With all due respect to the years of learning they have done, they are first and foremost people, and that makes them just as vulnerable to making mistakes as we all are.

So go on - if you are not happy with something your doctor says or does, or how long they make you wait or the lack of communication - talk to them!  Your life might depend on it.   

This brings me to another thought.... Lets say that I had not asked for more details on my test results, lets pretend that I had been happy with that 'all clear' and lets pretend that there really was something serious going on that I was not told about.  Who would be to blame when the serious stuff hit under these circumstances?

Seriously.....think about it.  I am in charge of my life.  I would be totally stupid to give all that power to someone who hardly knows me, someone who sees a constant stream of people all day long and who would probably not recognize me in the grocery store, someone who cannot possibly be expected to care about all their patients as I care about myself.  How could I place full blame on someone else  in those circumstances if I had not cared enough about myself to make sure I am ok and to see and understand my own results?  

Keep up with your tests and results and get a copy of them all.  And encourage someone else to do so too.  It can save a life!

All in all today alone I was given three pieces of information that I should have had prior to this visit.  Some of this information was from 2005 and a different doctor and some went even further back than this...  In my case I was very fortunate - I don't have anything serious going on at all, but how many others are walking around with the 'all clear' bell ringing happily in their ears while stuff is going wrong with them?  

Although this sounds like a bad day - it really has been a fantastic one.  I re-learned valuable lessons, gained a bit of belief in the medical profession, gained more trust in myself and Steven's results are good again!!  

What a day....... :)
love and light

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