The Dictionary and the truth (my truth)

Compassion: Actively sympathetic concern for the suffering of another : mercy. adj. compassionate.


Empathy: Identification with and understanding of the thoughts or feelings of another. adj. empathetic.


Doctor: A person trained and licensed to practice the healing arts, as medicine or surgery. A person holding the highest degree given by a university. To modify or alter for a desired end.



When I was doing some research for writing this blog, I ran across some things that were kind of surprising.



One of the things I found out was that Doctors no longer state the Hippocratic Oath when they become doctors, they haven't for a long time. I actually looked up the Oath and it's probably better that they don't abide by it, because it is so out dated and in some parts, just plain wrong. What surprised me the most was that no where in the Oath has there ever been the words "do no harm." I guess it's just one of those old wives tales that you hear about so often, that you just naturally believe is true. Oh, yeah and I saw it on TV, so it must be true, right?



The definition of doctor is interesting also, "a person trained and licensed to PRACTICE the HEALING ARTS. I have known and said that doctors are just "practicing." I have told many people this (because sometimes doctors need to be given a break they are not perfect, they are human and everyone makes mistakes) but maybe I should have been saying it to the doctors. More and more I am finding that it's the doctors who believe they never make mistakes, that they are hardly ever wrong and that they know better than the patient. Now I can hear it already...So let me say this before you delete this blog, I am not saying ALL doctors and I am not saying that they ALL fall into every point I just made, b.u.t. (behold the underlying truth) it is a larger percentage of doctors than I ever thought and I think it's sad.



I have worked my whole life different kinds of "alternative" stores and have had so many wonderful customers most dealing with devastating health issues themselves or with someone in their family. At the book stores I worked at, people researched alternative methods of healing everything from the laying on of hands, reflexology, acupuncture and energy work. At the health food store they research dietary changes, fasting, and supplements.



I have been a part of the medical world since I was about 9 years old, Stanford's Children's Hospital is where it started and I could not tell you how many doctors and specialists I have seen in the last 30 years. I know it's more than 50 and I hope it's less than 150. The sad thing is, is that I could count the number of great doctors on two hands. My definition of a great doctor is probably not what you think, it's not lofty, or perfection or having to be God like. It's someone who sees me more than the sum of my disease, who will sit by my bed (not rushed to get out of the room) and to give me the news, test results or diagnosis (good or bad). Someone who is not already thinking about the next patient they have to see, someone who is empathetic about how frustrating and scary it might be to wait for test results to come back. Someone who will listen to me about what I think might be going on (in my own body) instead of dismissing my opinion so they can get on with telling me what they know. Someone who is compassionate, not afraid to admit that they don't know all the answers, but are willing to understand or learn about something new.



Maybe laws need to be changed or contracts written up so doctors are not held liable when a patient wants to try some new drug or test or alternative medicine. I don't know what all the answers are to this problem. I am pretty sure that they need to teach doctors to be more compassionate and empathetic, because I am sure that every doctor has had someone in their family or a friend who has gone through the
medical system who can tell them what it's like to be a patient and how much better it could be if the patient were treated like a human being instead of a disease.

Time flies when your alive

I stole that title from a one man play that was on HBO years ago. I loved the show and always remembered the title. It was done by one of the lesser known actors on "CHiP's" (do you remember that show?) It was about he and his wife and their struggle when she was diagnosed with cancer. He spoke beautifully of her and how in the end she was surrounded by her family.
"Time flies when your alive"....Isn't it true though...it was supposed to be that all these electronics, computers, cell phones, and faster computers were supposed to give us more time, but it feels like we have even less. People are so distracted by all the technological toys, that there is no more silent time for us to think, figure out what we want, what we think. People talk on their cell phones in the car, the store, while they check their email...I really think most people are afraid to be by themselves (myself included). To hear what's going on in their own head. I remember a time when I would walk down the grocery store aisles and not hear a one sided conversation about someones personal life and what their friend thought they should do about it. Or looking at the car next to me on the road where everyone was on their cell phones (the baby had a toy cell phone, of coarse) instead of talking to each other. But hey....they are getting things done....
Well, the reason I started with that quote was because I thought it had been a few months since I had updated my blog....7 months......it's been 7 months...so much has happened since April. A couple hospital trips, lots of tests, more doctors, dislocated hip, an amazing fundraiser, my Mom met Stacy from "What not to Wear" (my favorite show on the planet), on the list & off the list and hopefully back on again soon, art, some art, no art, and starting over....waiting and waiting.
Today, I make the promise to myself to blog more often, it's good therapy to write it down, look back and see how I have been doing. That reminds me, I need to make an appointment with my therapist....it's been too long since I have seen her and she helps me to feel more grounded....I have said it before and I will say it again, I think everyone could use a good therapist!

Do you know what kind of patient you are?

I never thought that there were such differences in the patients that doctors have. At one end of the spectrum is the one who really wants to know every detail about what is going on (I am this kind), what is going to be happening next and "Hey! What was that medicine you just put in my IV?"
Then at the other end of the spectrum there are patients who don't want to know the details...just tell me when and where to show up, I am going to keep my eyes closed, just tell me when it's OK to open them, the doctors know what's best and so they just go along with whatever the doctors ask them to do.
I could not handle it that way...if I don't know all the details of each thing happening along the way, I tend to make things up in my mind and believe me...what comes out of there is usually the worst case scenario thing that could happen (although I am working on it).
I would like to know where you fall in the spectrum...please take a few moments and let me know...see, for me...the more information the better.
Love & Light,
Stacey

New post but really short..

As I am about to fall asleep at 7pm. I wanted to write a quick note and let everyone know that I am still alive or at least coherent. OK, maybe not that coherent. I had a trip to Carson City for a doctor's appointment and it just whipped me out I mean, that was yesterday and I am still tired today. Every other word miss spelled and I am falling asleep as I write this. I wanted to pass on the good news I got a couple of days ago, I am back on the transplant list and that is great relief! So, goodnight my sweet friends, good night.
Love & Light,
Stacey

5 and 10 years down the road

I have been listening to this book about change from Marianne Williamson and one of the questions she asks is "where do I see my self in 5-10 years." Well I love questions like this because it allows me to make plans for way after my transplant is over and done with and I see myself healthy and energetic.

In 5 years, Gary and I (still being very happily married) will have sold our medical invention that we are currently working on (right now we are looking for people to get our invention patented, designed and marketed) that will help millions of people, not only in the United states, but around the world. Within that 5 years we will have become financially abundant (with both our artistic careers being our full time jobs) we will be able to create a non-profit, that links patients with advocates who will be able to help each person with what they need most (while going through such a difficult time) whether it is help at home, someone to make phone calls, someone to take the patient to appointments and be able to take notes for them, so they can explain things later. My plan is that by this time, medical insurance companies will no longer exist (come-on people, get out there and VOTE!) so I will be touring medical schools doing lectures on the importance of the patient doctor relationship and how to best help the patient living with illness. Teaching doctors that by having a good bedside manner and developing relationships with their patients, will not only be healthier for the patient but also for the doctor (because by separating themselves from being human and only dealing with the patient as the disease, causes the doctors and nurses more stress, because they are going AGAINST the nature of their Spirit).

In 10 years Gary will be 66 and I will be 49, so I hope we will be doing a lot of world travel, museums, and such....but also more philanthropy work around the world.

Being Grateful

There are so many things that I am grateful for...like my husband Gary, he does more for me than there is space on these pages to write down...he is my best friend and as I have said before, I am more in love with him than ever.
My family, there for me in a moments notice...for appointments, phone calls, hospital stays, and shoulders to cry on. They have taken over phone calls when I just couldn't handle talking to one more person or doctor or insurance company. They will run to get whatever food I want, when hospital food is just uninviting. Their continued strength has been there for me, when mine was faltering.
My friends....I have sat here for the last 5 minutes trying to figure out how to put into words what my friends mean to me and how grateful I am for them, because you see growing up (I sat by myself at my high school graduation) and until I was around 23-24 years old, my friends were not really people I could count on....so until I was about 24, I really didn't know what true friendships were like. But my friends now...well, I would do anything for them, because that is what they have done for me. They have run fundraisers for me, when things were starting to get tight, they have dropped what ever they were doing at the time to come sit with me to wait for a phone call or run me to a last minute doctors appointment. Phone calls or lunch dates to brighten my day or to just listen.
I am so grateful for this community of people that I live with...not only do I live in a beautiful area, the people living here make it more beautiful. People I don't know, telling me that I am in their prayers...donating money to help us pay bills. I really don't think I could ever live some place else, there is no more beautiful place than right here.
I am grateful to all the people I don't know around the world who are saying prayers for me, I have gotten donations and prayer from pretty much every where in the U.S. people who don't know me, but hear my story and give of themselves, I keep them in my prayers as well.
Then there are all the medical people I am thankful for....Judy, my patient advocate (and friend) she has saved me on so many occasions, calls to her when I am crying my eyes out and pulling out my hair. She has saved me hours and days of stress, that would have put me back in the hospital.
The nurses, doctors, my transplant coordinators, who are understanding...who truly try to understand what I am going through, not all of them are that way, many, many....have cut themselves off from what their patient are going through (for whatever reason, stress, being a clinical person and not a people person or just being in the job longer than they should...but what ever the reason, the patients need someone with a good bedside manner, if they are too clinical or they are tired of taking care of patients....time to move on. I could never do the work that these people do and I am constantly amazed that anyone could do it) so for those medical people (which do make up the higher percentage) thank you, thank you, thank you, not only do you save lives and bring good care to people who are sick, but you also HEAL, you HEAL people when you care about how things are affecting them, what each situation might do to us on all levels (mentally, emotionally, and spiritually), you HEAL when you understand I am more that just my physical body....so again thank you, I am so grateful and blessed when you are a part of my healing process.
I am thankful for having a roof over my head, and hot water to take long baths in. I am grateful for the clothes that keep me warm during these cold months and the food that comforts my belly. I am thankful for my dog Maggie, who puts a smile on my face and Kitty Star, whose warm soft fur is comforting when I am feeling down. I am thankful for all those who have gone on before me, I know I have a choir of Angels keeping me in their loving space.
I am so grateful and blessed to have such an abundant life...thank you Universe, God, Goddess, what ever name you call her.

Do they know I am a Human Being and not just a medical file number?

I thought I was done with testing after this last one....back on the list, right? No...excuse me , we just need you to do one more test, then the Transplant Committee will be satisfied (maybe) ....but if we find one cell out of place...more test, more tests, more, more, more....when is enough, enough? The committee wants me to have a special MRI done, that uses this special contrast. When I asked why they didn't do this test before they went in through my side, I didn't understand the reason. My own fault...I didn't go to medical school to learn all the medical terminology...so Judy (my patient advocate and angel) is looking into it, so maybe she can explain it to me in words I understand, really I am not stupid, just overwhelmed. So cancer....that's what they are looking for...there is a 99% chance I DON"T have it and a 1% chance I could have it.
Well, when something lit up on the PET scan...all hell broke loose (I guess) with the doctors and the committee and I was immediately taken off the list...you know how it is, guilty until proven innocent. So then I heard the call "LET THE TESTING BEGIN!".....blood test, for markers for cancer, CLEAR! MRI, CAT SCAN, X-Rays....CLEAR, CLEAR, CLEAR! OK...let's try this one...we are going to go down your throat and up your butt....NOTHING, CLEAR!

Oh, by the way, I said "this sure is causing me a lot of stress...I have to wait weeks for the appointment for the tests and then I have to wait for that phone call...you know that call...if you have ever waited for it....am I going to live through this? The whole time I am waiting....pacing....keeping my mind distracted....please God, don't let it be cancer....I can't handle one more thing..." I tell people all the time 90% of the time I am OK, thinking positive, meditating, creating beautiful artwork, doing my affirmations...."this to shall pass., "I know God wouldn't give me anything I couldn't handle, I just wish he didn't trust me so much (Mother Teresa)" I stay in the "NOW", I don't let that negative energy enter my space, I am letting go and letting God (whatever form she takes). But, 10% of the time...I am some where between trying to hold my shit together with duct tape and completely falling apart. My support circle is strong and if the pity party goes on too long I call one of them, hoping to catch them in their 90% place. But every time there is a new test or new results to wait for....I just get more and more tired and I can't bounce back up as fast. Do all those people (doctors, assistants, insurance company people, transplant committee members) know what it's like....I would REALLY like to know how many of them have either gone through a life threatening illness, had their spouse go through one, has had a child with a life threatening illness or have been someones caretaker...if they haven't been that close to a person who have cronic or critical illness, they really can't understand what it's like....you are often treated like you are your medical file (I'm not saying everyone treats me like that or it happens all the time) "hello, transplant patient #145 78 782, appointment 3pm...if you will take a seat the doctor will see you in about 2 hours"....when the doctor comes in it's quick, to the point, and most of the time (I would say 99% of the time) I am never asked about how all this is affecting "me" (emotionally, mentally, or spiritually)....and when I say me, I mean "me".....not #145 78 782 "me".....even though one of my diseases is very affected by my stress. It is never brought up, it seems like they need to stay an arms length away. Why? why does it have to be so clinical, so scientific, so cold....are they afraid to get emotionally involved, you know it's just my life we are talking about, no reason to keep their distance. Ramble, ramble, ramble....sorry, off on a little tangent in my head.

So...just one more test, they are going to knock me out, go through my side to where the PET Scan "lit" up and take a biopsy and maybe leave a catheter in my side (just a little gift to go home with)...but, no.....prayer works, they went in and all they found was my poor little scarred up Live-r, nothing to biopsy, no where to stick the catheter. NOTHING, CLEAR! and then this doctor told my family and me the same thing the ERCP (the test that went down my throat) doc' told us...it's just all scar tissue, they should put you back on the list....one of the doctors (ERCP) went so far as to say to me and my doctors, that the PET scan is a lousy test to do on patients with my Live-r disease, because scar tissue and inflammation (the other quality of my disease) can light up on PET scans and show up as false positives....but none of that seems to matter, why? So I come home Tuesday, thinking I am in the clear, then I got the call from my doctor for this new test, really I don't have a choice, I HAVE to have it done, there is no way around it....so now I just have to wait for my insurance company to give the thumbs up and then wait for the next available time slot...and then even though it's already been a month that I have been off the list, I will wait for the results....I know I don't have cancer, I refuse to fight any of this, I surrender, whatever Her plans are for me, I don't know, but I will not fight everything that comes up, I know She would not want me to do that...the Universe loves me unconditionally, no matter what choice I make....but I would be lying if I said that there is not a small part of me (my Ego) that is scarred to death, scarred of getting that answer no one wants to hear. I fought for a long time, until I finally realised, that by fighting, I need something to fight against....and since everything is a part of Her, a part of the Universe (even cancer) then I am fighting Her...and I won't do that. I will do my best to accept whatever is brought into my life....and try to make the best choices for my own well-being....sometimes I do well and sometimes I don't....but you know, I am only Human.