Wednesday, July 28, 2010
My Latest Article - Educating Yourself As A Patient
http://dearthyroid.org/chronic-snarkopolist-the-snarkopolist-way-to-educating-yourself-as-a-patient/
A Medical Moment I've Never Shared
"I don't want you to be mad at me."
As soon as those words left my mouth both of us stopped. My surgeon is younger than me by a couple of years. He said, "I would rather it be NOTHING than have it be what we fear - let's go in now and check Melissa. It is better this way."
His tone was much more gentle than usual. He got it.
A life time of PLEASING PEOPLE - BEING OUR BEST - ALWAYS MAKING PEOPLE PROUD had come full tilt. Suddenly- when people like us- "successful" "powerful" "in charge" MEANS NOTHING. Those words fall away and all I wanted was for my doctor to LIKE ME - to not be mad at me for being sick... I wanted it to stop.
It might not be RATIONAL - but it was TRUE AT THE TIME. Looking back I can see with full 20-20 that my HEALTH was more important and that I needed to be MORE WORRIED about what was going on INSIDE ME... but at the time it was like I was an undergrad again -- studying SO HARD just to get 100 on an exam SO MY PROFESSOR WOULD BE PROUD.
And I know now AS A PROFESSOR- that I love and cherish my students who come to class, show up, bring insight, participate, engage in the diversity of the classroom experiences -- NO MATTER WHAT THEIR GRADES. I truly do. But I would NEVER have believed this when I was taking my first undergrad classes. Nope. GRADES MATTERED, pleasing people mattered, approval mattered. And more importantly NOT BEING A BURDEN MATTERED. I felt like a burden to my surgeon. I felt like a burden to myself.
His anger was the only viable worry I had because it was the only one that was coming to MY MIND in consideration of my own health. I AM ANGRY THAT I AM SICK AND NEED MORE SURGERY.
I was raised to "put a bandaid on it and go to school anyway." Drawing attention to oneself for injury or illness was NOT an acceptable response in my family. Watching my father in the hospital making jokes while having a bleeding brain tumor really hit this home for me. There was never room for suffering or sharing pain or fear. And so - there was no time for "kissing boo boos" either. And heaven forbid you ask your doctor to do anything but a cursory glance and tell you to eat some chicken soup- because that's what cure's every good Jew!
Even as a chronically ill patient- one who knows more than many of my doctors about my specific illnesses - I do not know always how to respond to my own increasingly changing (and exasperating medical needs). Sometimes specialists will ask, "How have you handled this problem in the past?" I once answered, "I cried and then I prayed and then I peed blood for a few weeks until they put me on an iv and I sucked it up and pretended not to feel pain and taught class anyway?" THAT IS MY ANSWER almost always. I had no insurance all through my several grad degrees. It wasn't like I was getting "good" medical care. They kept me ALIVE. It wasn't like I was used to being believed or treated or taken care of OR self-advocating very well until recently.
Meanwhile -- my post here is about how ever so subtly in the classroom and in our doctor/patient or therapy relationships - ESPECIALLY WHEN THE SHIT IS HITTING THE FAN -- we have parental moments. They call this "attachment" in psychology - but I'm not really going that far... I'm just talking about that subtle shift- where suddenly we revert to that place where we NEED some guidance and we are afraid -- and we WANT SOMEONE to reach out and say, "I've got you."
I don't think doctors realize how often with all the new, "patient empowerment" and "patient choice" and all the huffing and puffing even I DO - how often the shift happens when we become afraid during CRISIS. I don't think professors realize it either... I REMEMBER needing the praise and criticism (and not really getting it - but craving it anyway.) I remember THRIVING in college because I used GRADES to fuel my sense of who I was until I fostered my own identity as a scholar... and luckily I found mentors who LIKED me -- who approved of LOUD AWKARD people like me and encouraged me.
Meanwhile -- when it comes to being chronically ill -- what happens when we have to self soothe? What happens when we must parent ourselves, educate ourselves, hold ourselves through much shit -- yet STILL have crisis? Because I still have medical crisis. At those moments I shift from independent Melissa who has RELATIONSHIPS with her doctors to someone who says, "I don't want you to be mad at me." And in those moments I need my doctor to get it. I need them to see themselves and understand how many times THEY TOO have wanted someone to not be angry with them for FAILING.
And I want them to realize how often WE SEE OUR OWN SICKNESS AS A FAILURE. We do. We try not- but we do. I DO. It is human to do our best and become frustrated by setbacks. But this is not frustration. This is REAL NEED. I don't know how many doctors get it. I have been lucky. The several times I've needed surgeries my surgeons have said, "I'll take care of you." Or... in this case - they just got it. I could tell... and they supported me and said all the right words. I already posted about how my most recent surgeon did visualizations with me before my surgeon. I've been lucky. LUCKY.
Sometimes it is OK to be vulnerable. Especially, when like me, you tend to blow harder than you really are. When I am my most afraid I tend to gear up like a warrior. So - at my moment of GREATEST FEAR - I had my most childlike response. And I think it saved me from being ignored...
It is fine for me to tell my chronically ill friends, "Articulate your needs, have a relationship, blah blah blah." But when the shit hits the fan- we become children again. We just do. The last words my grandmother said before she died was, "Mommy." In the end - we all want and need comfort and too many of us have been stoic for far too long.
I am learning that if I DON'T BE A WHINEY LITTLE WHORE all the time... and when I need it - I can be vulnerable in the moments that a hero moment can truly take place. Because doctors and therapists and all people can rise bigger than themselves. We all can. We are all capable of being more than we are when someone else NEEDS US.
This is just a reflection. You might see it as a short coming - but it is my truth. I never told you about it before. And it might well happen again. I hope if it does - I have another moment when the person who is there can rise above themselves and come through for me. I'm not "always" in charge of my own shit. Sometimes - I'm vulnerable and my shields are rendered truly invisible. Sometimes my shields crumble and I need scooped up and carried. I'm grateful and humbled for the moments I have been helped. It has made me a better person. More capable inside of me. And more able to recognize it inside of others. And I believe in those moments the people who have recognized me have become better too. I think we as humans owe it to ourselves to BE COMPASSIONATE.
It is HARD to have compassion for the chronically ill... we are demanding and grating. We are hard to love. Yet-- I'm opening myself to. I'm bringing myself here on this blog - NOT as a counselor, not as a professor, but as PATIENT. I'm doing it to be vulnerable and honest. And I hope this reflexive exercise works.
As soon as those words left my mouth both of us stopped. My surgeon is younger than me by a couple of years. He said, "I would rather it be NOTHING than have it be what we fear - let's go in now and check Melissa. It is better this way."
His tone was much more gentle than usual. He got it.
A life time of PLEASING PEOPLE - BEING OUR BEST - ALWAYS MAKING PEOPLE PROUD had come full tilt. Suddenly- when people like us- "successful" "powerful" "in charge" MEANS NOTHING. Those words fall away and all I wanted was for my doctor to LIKE ME - to not be mad at me for being sick... I wanted it to stop.
It might not be RATIONAL - but it was TRUE AT THE TIME. Looking back I can see with full 20-20 that my HEALTH was more important and that I needed to be MORE WORRIED about what was going on INSIDE ME... but at the time it was like I was an undergrad again -- studying SO HARD just to get 100 on an exam SO MY PROFESSOR WOULD BE PROUD.
And I know now AS A PROFESSOR- that I love and cherish my students who come to class, show up, bring insight, participate, engage in the diversity of the classroom experiences -- NO MATTER WHAT THEIR GRADES. I truly do. But I would NEVER have believed this when I was taking my first undergrad classes. Nope. GRADES MATTERED, pleasing people mattered, approval mattered. And more importantly NOT BEING A BURDEN MATTERED. I felt like a burden to my surgeon. I felt like a burden to myself.
His anger was the only viable worry I had because it was the only one that was coming to MY MIND in consideration of my own health. I AM ANGRY THAT I AM SICK AND NEED MORE SURGERY.
I was raised to "put a bandaid on it and go to school anyway." Drawing attention to oneself for injury or illness was NOT an acceptable response in my family. Watching my father in the hospital making jokes while having a bleeding brain tumor really hit this home for me. There was never room for suffering or sharing pain or fear. And so - there was no time for "kissing boo boos" either. And heaven forbid you ask your doctor to do anything but a cursory glance and tell you to eat some chicken soup- because that's what cure's every good Jew!
Even as a chronically ill patient- one who knows more than many of my doctors about my specific illnesses - I do not know always how to respond to my own increasingly changing (and exasperating medical needs). Sometimes specialists will ask, "How have you handled this problem in the past?" I once answered, "I cried and then I prayed and then I peed blood for a few weeks until they put me on an iv and I sucked it up and pretended not to feel pain and taught class anyway?" THAT IS MY ANSWER almost always. I had no insurance all through my several grad degrees. It wasn't like I was getting "good" medical care. They kept me ALIVE. It wasn't like I was used to being believed or treated or taken care of OR self-advocating very well until recently.
Meanwhile -- my post here is about how ever so subtly in the classroom and in our doctor/patient or therapy relationships - ESPECIALLY WHEN THE SHIT IS HITTING THE FAN -- we have parental moments. They call this "attachment" in psychology - but I'm not really going that far... I'm just talking about that subtle shift- where suddenly we revert to that place where we NEED some guidance and we are afraid -- and we WANT SOMEONE to reach out and say, "I've got you."
I don't think doctors realize how often with all the new, "patient empowerment" and "patient choice" and all the huffing and puffing even I DO - how often the shift happens when we become afraid during CRISIS. I don't think professors realize it either... I REMEMBER needing the praise and criticism (and not really getting it - but craving it anyway.) I remember THRIVING in college because I used GRADES to fuel my sense of who I was until I fostered my own identity as a scholar... and luckily I found mentors who LIKED me -- who approved of LOUD AWKARD people like me and encouraged me.
Meanwhile -- when it comes to being chronically ill -- what happens when we have to self soothe? What happens when we must parent ourselves, educate ourselves, hold ourselves through much shit -- yet STILL have crisis? Because I still have medical crisis. At those moments I shift from independent Melissa who has RELATIONSHIPS with her doctors to someone who says, "I don't want you to be mad at me." And in those moments I need my doctor to get it. I need them to see themselves and understand how many times THEY TOO have wanted someone to not be angry with them for FAILING.
And I want them to realize how often WE SEE OUR OWN SICKNESS AS A FAILURE. We do. We try not- but we do. I DO. It is human to do our best and become frustrated by setbacks. But this is not frustration. This is REAL NEED. I don't know how many doctors get it. I have been lucky. The several times I've needed surgeries my surgeons have said, "I'll take care of you." Or... in this case - they just got it. I could tell... and they supported me and said all the right words. I already posted about how my most recent surgeon did visualizations with me before my surgeon. I've been lucky. LUCKY.
Sometimes it is OK to be vulnerable. Especially, when like me, you tend to blow harder than you really are. When I am my most afraid I tend to gear up like a warrior. So - at my moment of GREATEST FEAR - I had my most childlike response. And I think it saved me from being ignored...
It is fine for me to tell my chronically ill friends, "Articulate your needs, have a relationship, blah blah blah." But when the shit hits the fan- we become children again. We just do. The last words my grandmother said before she died was, "Mommy." In the end - we all want and need comfort and too many of us have been stoic for far too long.
I am learning that if I DON'T BE A WHINEY LITTLE WHORE all the time... and when I need it - I can be vulnerable in the moments that a hero moment can truly take place. Because doctors and therapists and all people can rise bigger than themselves. We all can. We are all capable of being more than we are when someone else NEEDS US.
This is just a reflection. You might see it as a short coming - but it is my truth. I never told you about it before. And it might well happen again. I hope if it does - I have another moment when the person who is there can rise above themselves and come through for me. I'm not "always" in charge of my own shit. Sometimes - I'm vulnerable and my shields are rendered truly invisible. Sometimes my shields crumble and I need scooped up and carried. I'm grateful and humbled for the moments I have been helped. It has made me a better person. More capable inside of me. And more able to recognize it inside of others. And I believe in those moments the people who have recognized me have become better too. I think we as humans owe it to ourselves to BE COMPASSIONATE.
It is HARD to have compassion for the chronically ill... we are demanding and grating. We are hard to love. Yet-- I'm opening myself to. I'm bringing myself here on this blog - NOT as a counselor, not as a professor, but as PATIENT. I'm doing it to be vulnerable and honest. And I hope this reflexive exercise works.
Sunday, July 25, 2010
Feeling It Today- Passion And Honesty
It is important for me right now - to trust this process... my process.
We are all of us part of it - all of us. I was talking to one of my friends who told me after he got his MD he thought, "is that it." And I laughed - b/c I've felt the same way MY ENTIRE LIFE. It is why I never walked in any of my graduations. My version of "is that it?" turned into a seeking for MORE MORE MORE from myself. I've been on a constant quest for MORE.
Until one day I realized that there is NO MORE. There IS NO MORE.
There is only experiencing this moment- THIS MOMENT with the people who wish to be in it with me. Because right now I wish to be in it with you. I just do. I wish to know people. I wish to get to know people slowly and deeply. On the levels they wish to reveal - shedding away their fears and their pains -- And more importantly for me -- I am learning to LET PEOPLE KNOW ME. That is what THIS blog is about.
I'm BEING HONEST. I'm being emotional. I'm being REAL. I'm letting my fears and pain and my successes SHOW. It is not about WHAT SUCCESSES I have made but about WHO I AM ON THE INSIDE.
And that is very important to me....
I judged myself harshly too. I was NEVER enough - never. And now - I sting with it when I see other people worry that they are not enough... they look out and they FEAR they they seem trite or silly... they worry about their looks... and I STING WITH IT. I say, "BE YOU - BE IN YOUR MOMENT - LIVE THIS PROCESS FULLY." Why? Because I suppose I lost so much of my life looking to others - looking around me watching for APPROVAL and more importantly - for some SIGN - a message that would say, "THIS IS IT - YOU HAVE MADE IT."
And it never came. And the truth is - IT NEVER WILL. IT NEVER WOULD. The ok-ness with myself never came. It was a settling in actually. Slowly- a process... From watching so many people I love deeply - TRULY DEEPLY- be not at peace with themselves...I began to see that WE ARE ALL OF US WHOLE - AND WE ALL HEAL EACH OTHER EVERY SINGLE DAY. This I believe to be true
Healing Moment
Like this - I was much smaller - still chubby- but before the illnesses REALLY HIT... and I was working out with my friend V... she is a lithe beautiful runner. As I was working out with her we were both looking in the gym mirror. I was focusing on my form and being GRATEFUL to have a friend there. Suddenly I heard her say, "God, I'm the fattest pig." I looked over and V had grabbed her tiny little thigh and squeezed it. Now- I know what you're thinking - but no - she was just having one of THOSE DAYS. I laughed. HARD. And I hugged her. And I said, "Thank you V! THANK YOU! If you feel fat and gross and awful - then I KNOW that I will NEVER be free of the notion that I need to be perfect. It is a culturally imbedded trait - we as women are MADE to feel this and call it fat when really it's just FEAR that we won't BE what we want."
In that moment I stopped feeling FAT. I just stopped. I felt light as air. As I put on enormous amounts of weight and lost it again due to illness and treatments my self-esteem did plummet and sway (I'mma goil - what can I say)- but V HEALED me from feeling fat that day. Her response was SO PAINFULLY BEAUTIFUL. We are none of us ever free of it. So why let WEIGHT get in the way of feeling inferior. Just feel inferior without blaming your weight already! Call a spade a spade!
I STILL get paranoid or my back gets up over JUDGY people... I just do. Something flares to life inside me. I hate it. I guess half of it recognizes my own judgmental patterns and half of it FEARS the judgment. "no please - take the time to understand me first - then you'll get me"... it is both I think. BOTH.
Walking around town with a healthy friend of mine - he seemed to flare to life around me - loving how I interact with people... I LOVE PEOPLE. yet - I am myself on a healing path. We heal each other. I am no longer FIXING THEM - but being together with them. We are blooming together- sharing gifts.
My most healing moment in my life was at the hands of a 17 year old girl - singing on stage. My heart wrenched inside my chest and was made whole in that moment. I will never be the same and for that I am truly grateful... she was no match for me (yet) as far as age, experience, education etc-- but she was FAR my superior when it came to GRACE and HEALING. And that helped me learn the power of CONNECTION and LOVE and willingness to put down my walls.
You can KNOW someone in two minutes. And yes- it takes a lifetime of trust to KNOW them fully- but a willingness to do so is ENOUGH. I am willing to LOOK FOOLISH now. I am willing to be vulnerable. It is new to me. All these spaces are new to me. I just wish I could carry it daily, hourly, by the minute... because sometimes in my daily grind I forget and set it down and become hussle bustle Melissa.
I LIKE who I am when I am rendered like this. People are always telling me how to have MORE FOLLOWERS ON TWITTER. And I am always saying, "I don't want MORE followers - I want better and more RELATIONSHIPS with people - to know them and to be known- so that THE ONES WHO WANT A RELATIONSHIP and A CONNECTION are the ones for me." Same as this blog... same as in my life, same as with my health.
I am trusting - more now - that my health is no longer as big a calamity but instead is a way to CONNECT. It is my way of SHOWING LOVE, vulnerability, humility, and HONESTY. I was never great at any of those things before. I was all about showing you WHAT I COULD DO DO DO. Now I can be with you - ALL OF WHO YOU ARE... in your own process - with your mystery - with your stuff... I can sit with you - laugh with you - cry with you. I am not afraid of your pain or your joy. Nor am I afraid to reveal my own.
This is new to me. Vulnerable to speak of it. And yet- I feel I must if I am to be in any sort of integrity in my life. And I watch my own self - I watch how I respond to certain personality types and feel some loss, some pain, some trepidation... because there are some types that cause me to feel, "not enough" again... that old personality where I want to show up and say, "LOOK LOOK AT ALL I HAVE BEEN" and roll out my ACTIONS /AND WHAT I'VE EARNED as opposed to what I've gained and been given in the form of GRACE, love, wisdom, peace, and mostly- right now -- this moment.
The methylpreds are soaring through me and I FEEL THEM... yet - I'm not judging them. I know the emotional responses are many and varied - and yet - I sit and bear witness to it. I also accept who I am -- I am an emotional woman... and so I allow myself to LAUGH AT IT -- and I allow myself to CRY about it. I am no buddhist - even if I respect it. I'm a passionate soul. I'm also a timid and shy soul - one of a geek. One who loves to serve... And so I've found a space where SERVING is not the same as FIXING -- NOT IN MYSELF AND NOT IN OTHERS.
And that is a truly great feeling. I am refreshed by my own acceptance of me-ness. And I am refreshed by that when I give it to you. And I truly am grateful when you give it to me -- because yo have. Each of you has sat with me when I needed it and humbled me with texts and calls and love and joy and difficult nights of infusions and pain. Some of you have sung me songs and broken my heart in joy and hilarity. Others of you have given me gifts and made my heart soar with gratitude. And always I have asked, "what did I do to deserve this?" And here I am again... This is my process. I do not judge it. It is simply WHERE I AM.
Right now. I bloom for you. I treasure your blooms. And we can pollinate and cheer each other on. This is a big deal. Let us never diminish our own gifts. Let us celebrate each other.
xx
We are all of us part of it - all of us. I was talking to one of my friends who told me after he got his MD he thought, "is that it." And I laughed - b/c I've felt the same way MY ENTIRE LIFE. It is why I never walked in any of my graduations. My version of "is that it?" turned into a seeking for MORE MORE MORE from myself. I've been on a constant quest for MORE.
Until one day I realized that there is NO MORE. There IS NO MORE.
There is only experiencing this moment- THIS MOMENT with the people who wish to be in it with me. Because right now I wish to be in it with you. I just do. I wish to know people. I wish to get to know people slowly and deeply. On the levels they wish to reveal - shedding away their fears and their pains -- And more importantly for me -- I am learning to LET PEOPLE KNOW ME. That is what THIS blog is about.
I'm BEING HONEST. I'm being emotional. I'm being REAL. I'm letting my fears and pain and my successes SHOW. It is not about WHAT SUCCESSES I have made but about WHO I AM ON THE INSIDE.
And that is very important to me....
I judged myself harshly too. I was NEVER enough - never. And now - I sting with it when I see other people worry that they are not enough... they look out and they FEAR they they seem trite or silly... they worry about their looks... and I STING WITH IT. I say, "BE YOU - BE IN YOUR MOMENT - LIVE THIS PROCESS FULLY." Why? Because I suppose I lost so much of my life looking to others - looking around me watching for APPROVAL and more importantly - for some SIGN - a message that would say, "THIS IS IT - YOU HAVE MADE IT."
And it never came. And the truth is - IT NEVER WILL. IT NEVER WOULD. The ok-ness with myself never came. It was a settling in actually. Slowly- a process... From watching so many people I love deeply - TRULY DEEPLY- be not at peace with themselves...I began to see that WE ARE ALL OF US WHOLE - AND WE ALL HEAL EACH OTHER EVERY SINGLE DAY. This I believe to be true
Healing Moment
Like this - I was much smaller - still chubby- but before the illnesses REALLY HIT... and I was working out with my friend V... she is a lithe beautiful runner. As I was working out with her we were both looking in the gym mirror. I was focusing on my form and being GRATEFUL to have a friend there. Suddenly I heard her say, "God, I'm the fattest pig." I looked over and V had grabbed her tiny little thigh and squeezed it. Now- I know what you're thinking - but no - she was just having one of THOSE DAYS. I laughed. HARD. And I hugged her. And I said, "Thank you V! THANK YOU! If you feel fat and gross and awful - then I KNOW that I will NEVER be free of the notion that I need to be perfect. It is a culturally imbedded trait - we as women are MADE to feel this and call it fat when really it's just FEAR that we won't BE what we want."
In that moment I stopped feeling FAT. I just stopped. I felt light as air. As I put on enormous amounts of weight and lost it again due to illness and treatments my self-esteem did plummet and sway (I'mma goil - what can I say)- but V HEALED me from feeling fat that day. Her response was SO PAINFULLY BEAUTIFUL. We are none of us ever free of it. So why let WEIGHT get in the way of feeling inferior. Just feel inferior without blaming your weight already! Call a spade a spade!
I STILL get paranoid or my back gets up over JUDGY people... I just do. Something flares to life inside me. I hate it. I guess half of it recognizes my own judgmental patterns and half of it FEARS the judgment. "no please - take the time to understand me first - then you'll get me"... it is both I think. BOTH.
Walking around town with a healthy friend of mine - he seemed to flare to life around me - loving how I interact with people... I LOVE PEOPLE. yet - I am myself on a healing path. We heal each other. I am no longer FIXING THEM - but being together with them. We are blooming together- sharing gifts.
My most healing moment in my life was at the hands of a 17 year old girl - singing on stage. My heart wrenched inside my chest and was made whole in that moment. I will never be the same and for that I am truly grateful... she was no match for me (yet) as far as age, experience, education etc-- but she was FAR my superior when it came to GRACE and HEALING. And that helped me learn the power of CONNECTION and LOVE and willingness to put down my walls.
You can KNOW someone in two minutes. And yes- it takes a lifetime of trust to KNOW them fully- but a willingness to do so is ENOUGH. I am willing to LOOK FOOLISH now. I am willing to be vulnerable. It is new to me. All these spaces are new to me. I just wish I could carry it daily, hourly, by the minute... because sometimes in my daily grind I forget and set it down and become hussle bustle Melissa.
I LIKE who I am when I am rendered like this. People are always telling me how to have MORE FOLLOWERS ON TWITTER. And I am always saying, "I don't want MORE followers - I want better and more RELATIONSHIPS with people - to know them and to be known- so that THE ONES WHO WANT A RELATIONSHIP and A CONNECTION are the ones for me." Same as this blog... same as in my life, same as with my health.
I am trusting - more now - that my health is no longer as big a calamity but instead is a way to CONNECT. It is my way of SHOWING LOVE, vulnerability, humility, and HONESTY. I was never great at any of those things before. I was all about showing you WHAT I COULD DO DO DO. Now I can be with you - ALL OF WHO YOU ARE... in your own process - with your mystery - with your stuff... I can sit with you - laugh with you - cry with you. I am not afraid of your pain or your joy. Nor am I afraid to reveal my own.
This is new to me. Vulnerable to speak of it. And yet- I feel I must if I am to be in any sort of integrity in my life. And I watch my own self - I watch how I respond to certain personality types and feel some loss, some pain, some trepidation... because there are some types that cause me to feel, "not enough" again... that old personality where I want to show up and say, "LOOK LOOK AT ALL I HAVE BEEN" and roll out my ACTIONS /AND WHAT I'VE EARNED as opposed to what I've gained and been given in the form of GRACE, love, wisdom, peace, and mostly- right now -- this moment.
The methylpreds are soaring through me and I FEEL THEM... yet - I'm not judging them. I know the emotional responses are many and varied - and yet - I sit and bear witness to it. I also accept who I am -- I am an emotional woman... and so I allow myself to LAUGH AT IT -- and I allow myself to CRY about it. I am no buddhist - even if I respect it. I'm a passionate soul. I'm also a timid and shy soul - one of a geek. One who loves to serve... And so I've found a space where SERVING is not the same as FIXING -- NOT IN MYSELF AND NOT IN OTHERS.
And that is a truly great feeling. I am refreshed by my own acceptance of me-ness. And I am refreshed by that when I give it to you. And I truly am grateful when you give it to me -- because yo have. Each of you has sat with me when I needed it and humbled me with texts and calls and love and joy and difficult nights of infusions and pain. Some of you have sung me songs and broken my heart in joy and hilarity. Others of you have given me gifts and made my heart soar with gratitude. And always I have asked, "what did I do to deserve this?" And here I am again... This is my process. I do not judge it. It is simply WHERE I AM.
Right now. I bloom for you. I treasure your blooms. And we can pollinate and cheer each other on. This is a big deal. Let us never diminish our own gifts. Let us celebrate each other.
xx
Saturday, July 24, 2010
Gratitude for Mommy's Little Helpers!
Today was "pill day" meaning I had to go to the pharmacy and get all my prescriptions and then back again jiggity jog. I cried when I saw my pharmacist and my favorite (of all time pharmacist in training). I felt a little silly crying - and the friend I was with hugged me and said, "Ohmygod you are so sweet"-- but it struck me - they got me through some SHIT TIMES. And they seemed genuinely touched too.
E-mails were exchanged. Goodbyes were said. And then I came home. I rested a bit - and then I prepared my pills... I have thirty prescriptions and medications and the pharmacist has ensured that I never have interactions or problems.
As I was sitting there today doing my pill meditation I had an overwhelming sense of GRATITUDE for my healthcare - that I have doctors who take care of me - write the prescriptions that honestly keep me alive, for the pharmacist who has given me such a good map of how and when to take the medications (and in some cases, what might even be a BETTER alternative). I felt blessed by the researchers who found the medication themselves- not the industry- but the RESEARCHERS - who found the chemicals for the sake of it being there - people like me and my friends - who seek knowledge for the sake of it being there - we look at our navels and then think thoughts... I felt happy for RESEARCH, and the hands that made the pills, and the people who made the ingredients and the people who packaged it and then the people who put them together and then all the people who somehow got together to make it happen for me to take it.
In the end - I am here primarily because of medication... and the will of God/the universe. If it were my time- I would have been gone long ago- because NO PILL is stronger than the force of the universe. Yet- ultimately - because we are given free will - it is OUR JOB to take responsibility for ourselves, take care of our health, engage in such a way to provide for ourselves. And in MY CASE that often means taking the medications that make my health work.
I can resent it. I can be angry at the expense of it. I can rail at the price. I can be bitter that my medications cost more than my rent (they do - even after my insurance co-pays). But ultimately - while I was sitting there putting all 31 days of my medications into my medication dispenser I felt GRATITUDE. I am here because PEOPLE made it happen. I am here because other people have helped me.
I felt connected to others like me who take the same medications. I feel peaceful today. I often do when I am being zen in my "medication meditation." I often use my medication dispensing time as a time to reflection on my life and dole out meds... but today is the first time I've come away feeling so whole and at peace with it. I have more meds now than ever. And yet- somehow - it is all working - harmoniously- and I am alive. And in being alive - I am here to continue to GIVE and SERVE and be part of this life.
So- that is what I have to say. Yes I am still moving and have pain... yet- when I posted my UPS box online for others to see my new address - several friends said, "Ohmy- you're only 5 minutes from me!" So now I have "instant Ohio friends" who I already have a connection to! I already have people who will be in my corner- I already have a support system there. I might be leaving a city I love- but I am surrendering to Ohio. I used to say, "I escaped Ohio." But now I realize - that was a child's thought. I hated that state because I left in bitterness and with angst. But I return now as an adult with the heart of an adult and the duty of an adult. I go back now in peace and I can live in joy. And - honestly- if I look with new eyes- perhaps I can see that anywhere I live I can live in love. Perhaps I can have a good life ANYWHERE. And maybe Ohio has gifts for me that I never saw.
And maybe, just maybe- I can be open to my own gifts too. It is time for me to branch out and cast my net. And I have hoped to come back to Atlanta at a later date. I always hoped to teach in the Bay Area or on the West Coast to be honest... and then I got sick. Then the FEAR gripped me... and then I began to feel SO UNSAFE that I never allowed myself to feel anything... just as I never allowed myself to think of having "a relationship" with anyone... Sometimes you just need to cast your net and believe that God has infinite mercy. Sometimes we get to experience life and realize the wisdom of it all later. I AM READY. (Afraid, sad, all the emotions of it so being).
E-mails were exchanged. Goodbyes were said. And then I came home. I rested a bit - and then I prepared my pills... I have thirty prescriptions and medications and the pharmacist has ensured that I never have interactions or problems.
As I was sitting there today doing my pill meditation I had an overwhelming sense of GRATITUDE for my healthcare - that I have doctors who take care of me - write the prescriptions that honestly keep me alive, for the pharmacist who has given me such a good map of how and when to take the medications (and in some cases, what might even be a BETTER alternative). I felt blessed by the researchers who found the medication themselves- not the industry- but the RESEARCHERS - who found the chemicals for the sake of it being there - people like me and my friends - who seek knowledge for the sake of it being there - we look at our navels and then think thoughts... I felt happy for RESEARCH, and the hands that made the pills, and the people who made the ingredients and the people who packaged it and then the people who put them together and then all the people who somehow got together to make it happen for me to take it.
In the end - I am here primarily because of medication... and the will of God/the universe. If it were my time- I would have been gone long ago- because NO PILL is stronger than the force of the universe. Yet- ultimately - because we are given free will - it is OUR JOB to take responsibility for ourselves, take care of our health, engage in such a way to provide for ourselves. And in MY CASE that often means taking the medications that make my health work.
I can resent it. I can be angry at the expense of it. I can rail at the price. I can be bitter that my medications cost more than my rent (they do - even after my insurance co-pays). But ultimately - while I was sitting there putting all 31 days of my medications into my medication dispenser I felt GRATITUDE. I am here because PEOPLE made it happen. I am here because other people have helped me.
I felt connected to others like me who take the same medications. I feel peaceful today. I often do when I am being zen in my "medication meditation." I often use my medication dispensing time as a time to reflection on my life and dole out meds... but today is the first time I've come away feeling so whole and at peace with it. I have more meds now than ever. And yet- somehow - it is all working - harmoniously- and I am alive. And in being alive - I am here to continue to GIVE and SERVE and be part of this life.
So- that is what I have to say. Yes I am still moving and have pain... yet- when I posted my UPS box online for others to see my new address - several friends said, "Ohmy- you're only 5 minutes from me!" So now I have "instant Ohio friends" who I already have a connection to! I already have people who will be in my corner- I already have a support system there. I might be leaving a city I love- but I am surrendering to Ohio. I used to say, "I escaped Ohio." But now I realize - that was a child's thought. I hated that state because I left in bitterness and with angst. But I return now as an adult with the heart of an adult and the duty of an adult. I go back now in peace and I can live in joy. And - honestly- if I look with new eyes- perhaps I can see that anywhere I live I can live in love. Perhaps I can have a good life ANYWHERE. And maybe Ohio has gifts for me that I never saw.
And maybe, just maybe- I can be open to my own gifts too. It is time for me to branch out and cast my net. And I have hoped to come back to Atlanta at a later date. I always hoped to teach in the Bay Area or on the West Coast to be honest... and then I got sick. Then the FEAR gripped me... and then I began to feel SO UNSAFE that I never allowed myself to feel anything... just as I never allowed myself to think of having "a relationship" with anyone... Sometimes you just need to cast your net and believe that God has infinite mercy. Sometimes we get to experience life and realize the wisdom of it all later. I AM READY. (Afraid, sad, all the emotions of it so being).
Wednesday, July 21, 2010
Crappy Doctor Day - Good Pharmacist Day
I PRIDE myself on having good relationships with my docs... I truly do. But today my endo was NOT in the mood. I know all docs can have an off day. Usually he looks me in the eye. Today he looked down at the desk and didn't meet my eyes - not once.
When I got there the front office staff threw a party- "YAY-- OUR FAVORITE PATIENT!" It was like a homecoming. I love complimenting the sassiest dressers on the planet. (I swear - they MUST be fashion consultants on the side - because they ARE COMPLETELY GORGEOUS AND DRESSED -TO.A.T). "YAYYYY- MY FAVORITE SASSY DRESSED PEOPLE!"
But my doc today was not giving me anything. Nothing. I went inside myself and thought - "Sometimes we all have bad days. THIS IS NOT PERSONAL." But I'm having a terrible time and I KNOW it is physiological. I know it is. And I'm afraid. And HE holds the keys - HE HOLDS THE FUCKING KEYS. And if he is having an off day- I DON'T WANT HIM TOUCHING ME. I don't want him not at his best.
I tried to explain what was happening while he wrote down what I was saying. I explained everything I had written on my post-it note and he recited back to me in DOCTOR-JARGON-MD-CONFUSING ME SPEAK language. I said to him, "those are big medical words that I don't understand and I don't want to. You don't have to wave a wand and fix it all today. I want to work this out with you - I want to be a team. I want you to cast a net and think broadly. I want you to help me fix the things we can fix, and if there is no fix- help me find a way to be more comfortable with the things I MUST LEARN TO LIVE WITH."
I brought up small EASY to fix things like my blood sugar... and more complex things that I NEED HIM FOR. I brought up FOUR things. In all they could be easy. It might be tricky. There could be MANY complexities. Or -- it might be something I must learn to live with and be interwoven with auto-immunity. And I know this. So does he. But he didn't converse with me. He didn't smile. He just looked at the desk and wrote out some forms.
I was a worm. Ugh.
I HATE when people treat people like that. I was treated like this all through grad schools and so was everyone I know. I HATE BEING IGNORED and I HATE being "wrong" for questions or for concerns. FUCK YOU - IT IS MY HEALTH. FUCK YOU - IF I HADN'T SOUGHT HELP FOR MY HEALTH - I WOULD BE DEAD RIGHT NOW. I just sat there quietly while he had his BACK to me and wrote on a piece of paper. (I guess they are not interested in using ELECTRONICS).
He finally explained that he did think I was having some complications I DIDN'T EVEN CONSIDER but not the ones I was worried about. (OF COURSE NOT- I'M NOT A FUCKING DOCTOR. IF I WAS - I WOULDN'T NEED YOU - I'D SELF DIAGNOSE, HAVE A FRIEND WRITE A SCRIPT- AND BE FINE-- I'M HERE FOR YOUR EXPERTISE. I'M HERE B/C I'M CONCERNED. I'm not a whiner. I'm here b/c something isn't right. Help me. Or tell me you won't - and leave me alone).
We're doing some testing - and other trixy things. We're still doing "watchful waiting" on some things... and I'd be SO MUCH MORE INCLINED to do stuck it out if I thought he gave a damn. I'm ok with watchful waiting if I felt like my life or death or even my fucking well being mattered. (I read several surgeons say this type of watchful waiting can result in negative results and that they would leave their doctor over it... others say it is "protocol." I HATE NOT KNOWING WHAT TO DO. I HATE IT. yet - I have SO MANY HEALTH CONCERNS - I'm willing to chill -- IF I TRUST HIM -- IF he doesn't look away from me and turn his back on me.
He found a few things at his check-up - yet he DIDN'T give me ANY advice on how to treat it... So I had to use my own research skills and log into the medical library at school and find out what I'd send to a doc if a new medical student asked me want to do about it... or if a doc wanted to read on that particular finding... I had to fucking do my OWN medical research. I find this insulting.
Bullshit. He could have EASILY told me this. He's not stupid. HE KNEW THIS. He had this in his head. He learned this in his first fucking year. Every MD probably knows this. WHY DID I HAVE TO GO FIND THIS MYSELF??? What if I didn't have these skills? Would I just suffer continually?
It makes me angry. Yes - he can have ONE OFF DAY-- but not so much that it causes ME to suffer and not get the medical care that I NEED.
Just as I can have ONE OFF DAY and not be my best. Or cry in front of my doc.
I'm upset. I'm going to do the blood work and give him ONE more chance... we all deserve it... but I still needed to vent. I don't LIKE to feel this way. At the end of our appointment I shook his hand-- and by force of nature humans look into your eyes when they do that. HE SAW MY EYES FOR THE FIRST TIME AT THE END OF OUR SESSION. And I flashed him my best smile. And he smiled back. "See you in a month." I said, "Have a better day today - and thank you for spending the time to listen to my four stuffs." He finally laughed... I smiled more... But I left feeling empty anyway... I shouldn't have to do a comedy routine just to get basic medical care. MEANWHILE... he's allowed a pass... I'm over it. Vent over. In a month- we will see... If he does this again - I will have located a replacement in Ohio and I will figure it out then.
In POSITIVE NEWS --- This required me to rely my pharmacist to help me concoct some stuff which she DID... I have to take it all before bed... it should keep my heart from racing past 100 b/c it's been going into the 160's every night. She is WONDERFUL might I add. WONDERFUL. I told her how much I enjoy and appreciate her awesomeness. I will miss her so much when I am no longer in Atlanta. How long has it taken me to build a relationship with her and her staff... Seriously. What will I do when I'm gone? You don't find fabulous pharmacists like this every day. You just don't.
I HATE wasting my time. I HATE IT. Meanwhile... in better news - I have some new specialists already lined up in Ohio. My new internists wanted me to have a cardiologist up there as well as pulmonologist since mine down here are too far away to be any good when I need them in a pinch.
But SHE is the one who stopped and said, "How's your heart?" HA! I had to fess up!
I love/hate doctors who have intuition. *grumble* She's on to me! Meanwhile-- my g/i doc INSISTED that I see a g/i doc up there too since she's too far away and I have too many ongoing issues...
So-- I'm keeping a handful here and a handful up there... Just need to find a neuropsych, (I've got a therapist who is already a PhD in counseling psych - who see's eye to eye w/ me and is familiar w/ my work... so THAT should be cool.. I'm just always afraid they will be reading my manuscripts and then will have to either recuse themselves from it or DASH IT TO THE GROUND AND TELL ME MY WORK IS CRAP. gah.)
I've got a move date - Aug 6th... Yipes. It is OFFICIAL NOW. Like a wedding. It is like knowing the exact date of your death... or a new job. YOU JUST DO IT. You must. My dad is flying up there before so he can get to his health... I will be here all alone - wrapping things up and packing (and crying I suppose).
Goodbye to the city I love.
Nina brought me a golden buddha statue. Buddha anywhere brings blessings, comfort, or remembrance. I will need this. I love Buddhist philosophies... Hell - I love most religious philosophies as long as they aren't rammed into my gullet. I just do. Buddhism is gentle and loving and leads the way for rightness. In this case - I feel like Nina is blessing me to heal and then come back whole and healed and love my city and have A COMMUNITY again. It is what both she and I loved about the particular neighborhood we live in. You cannot live IN TOWN Atlanta without WANTING to have a community. You'd just hate the noise and pollution and want to move out. If you TRULY live IN ATLANTA you must want to BE PART of Atlanta. Otherwise- you might as well go buy a big McMansion somewhere and be huffy about it all.
ahhh - long rambly post... I hope the endo isn't a turkey butt next time... I hope he was just having an off day. I hate the idea that I've somehow become a shitty patient just because I have NEEDS and come in asking for him to SEE TO THEM. I'm not bossy- I'm nice. I say, "I know these are multiple things - but they don't all need solved today. We can make a plan of attack - but you need to hear everything so YOU can figure out what's important and what might not be anything at all."
I'm not bossy. I'm really not. I'm also grumpy because I DON'T feel well and it IS affecting me and my moods and how I act. I hate it. I AM taking things personally and feel suddenly like I'm at fault when NO ONE is accusing me of anything. Hello - borderline personality much. I don't LIKE mental issues. I don't want to be that person... I want to be calm and serene - not obsessive or anxious...
rawrrrr.
This is my process.. This is my life. It will pass... but this is where I was today. Hopefully tomorrow will be a better day. Hopefully all our tomorrows will be better.
thank you for letting me tell my story. I needed to share it.
When I got there the front office staff threw a party- "YAY-- OUR FAVORITE PATIENT!" It was like a homecoming. I love complimenting the sassiest dressers on the planet. (I swear - they MUST be fashion consultants on the side - because they ARE COMPLETELY GORGEOUS AND DRESSED -TO.A.T). "YAYYYY- MY FAVORITE SASSY DRESSED PEOPLE!"
But my doc today was not giving me anything. Nothing. I went inside myself and thought - "Sometimes we all have bad days. THIS IS NOT PERSONAL." But I'm having a terrible time and I KNOW it is physiological. I know it is. And I'm afraid. And HE holds the keys - HE HOLDS THE FUCKING KEYS. And if he is having an off day- I DON'T WANT HIM TOUCHING ME. I don't want him not at his best.
I tried to explain what was happening while he wrote down what I was saying. I explained everything I had written on my post-it note and he recited back to me in DOCTOR-JARGON-MD-CONFUSING ME SPEAK language. I said to him, "those are big medical words that I don't understand and I don't want to. You don't have to wave a wand and fix it all today. I want to work this out with you - I want to be a team. I want you to cast a net and think broadly. I want you to help me fix the things we can fix, and if there is no fix- help me find a way to be more comfortable with the things I MUST LEARN TO LIVE WITH."
I brought up small EASY to fix things like my blood sugar... and more complex things that I NEED HIM FOR. I brought up FOUR things. In all they could be easy. It might be tricky. There could be MANY complexities. Or -- it might be something I must learn to live with and be interwoven with auto-immunity. And I know this. So does he. But he didn't converse with me. He didn't smile. He just looked at the desk and wrote out some forms.
I was a worm. Ugh.
I HATE when people treat people like that. I was treated like this all through grad schools and so was everyone I know. I HATE BEING IGNORED and I HATE being "wrong" for questions or for concerns. FUCK YOU - IT IS MY HEALTH. FUCK YOU - IF I HADN'T SOUGHT HELP FOR MY HEALTH - I WOULD BE DEAD RIGHT NOW. I just sat there quietly while he had his BACK to me and wrote on a piece of paper. (I guess they are not interested in using ELECTRONICS).
He finally explained that he did think I was having some complications I DIDN'T EVEN CONSIDER but not the ones I was worried about. (OF COURSE NOT- I'M NOT A FUCKING DOCTOR. IF I WAS - I WOULDN'T NEED YOU - I'D SELF DIAGNOSE, HAVE A FRIEND WRITE A SCRIPT- AND BE FINE-- I'M HERE FOR YOUR EXPERTISE. I'M HERE B/C I'M CONCERNED. I'm not a whiner. I'm here b/c something isn't right. Help me. Or tell me you won't - and leave me alone).
We're doing some testing - and other trixy things. We're still doing "watchful waiting" on some things... and I'd be SO MUCH MORE INCLINED to do stuck it out if I thought he gave a damn. I'm ok with watchful waiting if I felt like my life or death or even my fucking well being mattered. (I read several surgeons say this type of watchful waiting can result in negative results and that they would leave their doctor over it... others say it is "protocol." I HATE NOT KNOWING WHAT TO DO. I HATE IT. yet - I have SO MANY HEALTH CONCERNS - I'm willing to chill -- IF I TRUST HIM -- IF he doesn't look away from me and turn his back on me.
He found a few things at his check-up - yet he DIDN'T give me ANY advice on how to treat it... So I had to use my own research skills and log into the medical library at school and find out what I'd send to a doc if a new medical student asked me want to do about it... or if a doc wanted to read on that particular finding... I had to fucking do my OWN medical research. I find this insulting.
Bullshit. He could have EASILY told me this. He's not stupid. HE KNEW THIS. He had this in his head. He learned this in his first fucking year. Every MD probably knows this. WHY DID I HAVE TO GO FIND THIS MYSELF??? What if I didn't have these skills? Would I just suffer continually?
It makes me angry. Yes - he can have ONE OFF DAY-- but not so much that it causes ME to suffer and not get the medical care that I NEED.
Just as I can have ONE OFF DAY and not be my best. Or cry in front of my doc.
I'm upset. I'm going to do the blood work and give him ONE more chance... we all deserve it... but I still needed to vent. I don't LIKE to feel this way. At the end of our appointment I shook his hand-- and by force of nature humans look into your eyes when they do that. HE SAW MY EYES FOR THE FIRST TIME AT THE END OF OUR SESSION. And I flashed him my best smile. And he smiled back. "See you in a month." I said, "Have a better day today - and thank you for spending the time to listen to my four stuffs." He finally laughed... I smiled more... But I left feeling empty anyway... I shouldn't have to do a comedy routine just to get basic medical care. MEANWHILE... he's allowed a pass... I'm over it. Vent over. In a month- we will see... If he does this again - I will have located a replacement in Ohio and I will figure it out then.
In POSITIVE NEWS --- This required me to rely my pharmacist to help me concoct some stuff which she DID... I have to take it all before bed... it should keep my heart from racing past 100 b/c it's been going into the 160's every night. She is WONDERFUL might I add. WONDERFUL. I told her how much I enjoy and appreciate her awesomeness. I will miss her so much when I am no longer in Atlanta. How long has it taken me to build a relationship with her and her staff... Seriously. What will I do when I'm gone? You don't find fabulous pharmacists like this every day. You just don't.
I HATE wasting my time. I HATE IT. Meanwhile... in better news - I have some new specialists already lined up in Ohio. My new internists wanted me to have a cardiologist up there as well as pulmonologist since mine down here are too far away to be any good when I need them in a pinch.
But SHE is the one who stopped and said, "How's your heart?" HA! I had to fess up!
I love/hate doctors who have intuition. *grumble* She's on to me! Meanwhile-- my g/i doc INSISTED that I see a g/i doc up there too since she's too far away and I have too many ongoing issues...
So-- I'm keeping a handful here and a handful up there... Just need to find a neuropsych, (I've got a therapist who is already a PhD in counseling psych - who see's eye to eye w/ me and is familiar w/ my work... so THAT should be cool.. I'm just always afraid they will be reading my manuscripts and then will have to either recuse themselves from it or DASH IT TO THE GROUND AND TELL ME MY WORK IS CRAP. gah.)
I've got a move date - Aug 6th... Yipes. It is OFFICIAL NOW. Like a wedding. It is like knowing the exact date of your death... or a new job. YOU JUST DO IT. You must. My dad is flying up there before so he can get to his health... I will be here all alone - wrapping things up and packing (and crying I suppose).
Goodbye to the city I love.
Nina brought me a golden buddha statue. Buddha anywhere brings blessings, comfort, or remembrance. I will need this. I love Buddhist philosophies... Hell - I love most religious philosophies as long as they aren't rammed into my gullet. I just do. Buddhism is gentle and loving and leads the way for rightness. In this case - I feel like Nina is blessing me to heal and then come back whole and healed and love my city and have A COMMUNITY again. It is what both she and I loved about the particular neighborhood we live in. You cannot live IN TOWN Atlanta without WANTING to have a community. You'd just hate the noise and pollution and want to move out. If you TRULY live IN ATLANTA you must want to BE PART of Atlanta. Otherwise- you might as well go buy a big McMansion somewhere and be huffy about it all.
ahhh - long rambly post... I hope the endo isn't a turkey butt next time... I hope he was just having an off day. I hate the idea that I've somehow become a shitty patient just because I have NEEDS and come in asking for him to SEE TO THEM. I'm not bossy- I'm nice. I say, "I know these are multiple things - but they don't all need solved today. We can make a plan of attack - but you need to hear everything so YOU can figure out what's important and what might not be anything at all."
I'm not bossy. I'm really not. I'm also grumpy because I DON'T feel well and it IS affecting me and my moods and how I act. I hate it. I AM taking things personally and feel suddenly like I'm at fault when NO ONE is accusing me of anything. Hello - borderline personality much. I don't LIKE mental issues. I don't want to be that person... I want to be calm and serene - not obsessive or anxious...
rawrrrr.
This is my process.. This is my life. It will pass... but this is where I was today. Hopefully tomorrow will be a better day. Hopefully all our tomorrows will be better.
thank you for letting me tell my story. I needed to share it.
Tuesday, July 20, 2010
Questions I Ask Myself To See In New Ways - I Share With You
What surprised me today?
I was surprised by the depth of my emotions for my friend L's doggie dying and how GRATEFUL I am he opened up to me over his dad's death 3 years ago. I often feel so useless anymore... and yet - when people call me and talk to me and say, "I haven't spoken of this to anyone before" it makes me realize that even if you're only talking to me for three minutes you are starting your healing. And stories heal. We all hurt. I NEED to be needed.
I FEEL inadequate I just do. I feel fat. I feel less than because I've gained so much weight over the last year and I'm annoyed by it. And I've been taught to JUDGE IT. And yet- my weight is NO INDICATOR of my ability to HEAL INSIDE. It is merely an indicator of my HEALTH. And well - my health is OBVIOUS. I've always been active and healthy - and now I am not. This progressive illness has chipped away and I am FINALLY able to see it. I am surprised that I am still unwilling to admit defeat. I am STILL saying, "I can find remission - I can heal - I can do this." It might not happen overnight - but people heal. I might have to go slowly - and I might not win ultimately- but I cannot stop trying. I cannot sink into the depths of giving up. I must still FIGHT for myself.
I'm surprised by this new agoraphobia - I'm afraid sometimes to go outside of my house - terrified really - ABSOLUTELY TERRIFIED. I'm not sure where this has come from. It has blindsided me. I am willing to live with it because I assume it will go away again. I have heard that it is common in lupus but I do not like it. I am allowing it. But I DO NOT LIKE IT. I just roll with it and hold myself close and say, "I'm sorry Melissa - that you are afraid to go out today and meet new people or see your friends." I have two doctors appointments this week and three friends to see and one new person who has been nothing but beautiful - and ALL gripe me with an ice cold fear - it grips like I am going to my own doom tomorrow at 1pm. I know it is not rational - and so I will go out anyway. But that does not make the fear any less.
What moved or touched me today?
I was touched by a quick hug by Nina. I really needed it. I was grateful for that hug. My body is skin hungry.
When she called me to say, "I am close by your house and would love to hug you," my eyes burst into tears and I gratefully accepted. I truly needed her hugs. She has so much positive beautiful energy. I don't think she knows that. Most people don't. Most people think their struggles make them hard- but our struggles make us BEAUTIFUL - give us compassion. Our suffering makes us WHOLE if we don't mire in it. And Nina does not mire - she radiates love. Her hug healed me today.
I was moved by a telephone call from my Jeannie who is so sad over her grandfather's death. And I felt her pain and I sat with it. And I am always so moved by the depth of other people's sadness. I do not LIKE to feel it- but I am able to be there through it. I can accept all your sad moments with you. And I did. I am profoundly moved that I have such complex and beautiful friends who hold on to so much hope and pain and sadness and beauty and share it with me.
What inspired me today?
I am inspired by the resilience of human emotions to THRIVE to be KIND to be generous with each other - to find COMPASSION and to connect and make MEANING of our lives. So many people are in the hospital and sick and yet they are still CONNECTING through their pain. It humbles me - truly humbles me. I am so SO grateful to know these people.
I began thinking about what I wanted to build when I started using twitter... I didn't want a "social media network" I wanted a healing network - of RELATIONSHIPS. And I have that now. I have people I truly care about sharing their lives with me. It is small and intimate and I'm so proud of so many people who are moving forward in their lives. And I have the ability to watch them grow and show them my own areas of vulnerability and growth.
How did I use new eyes to see old things today?
For those of us who are chronically sick... our true suffering are constant irritants in not only our own lives - but our families lives, our doctors lives, and those around us. Yet- if we move past it and go deeper, we can MOVE BEYOND what we've been TOLD to believe about it. WE CAN!
We do not have to believe we are permanently disabled. We do not have to believe we are going to suffer severe and progressively horrific losses. We do NOT have to BECOME a medical statistic. Our pain and suffering - our "afflictions" can turn into something beautiful. They truly can. We can heal each other. And we can heal those around us. WE CAN! We can be kind, generous, loving. WE CAN BE MORE THEN WE ARE "SUPPOSED TO BE." We can be gems. I know this. I have seen with new eyes my own value and those around me. I have been healed again and again by people when I have gotten quiet and allowed it. Everyone has worth. You have worth. I have worth.
Our pain and suffering has caused us to take on new roles and new ways of being - and those new ways give rise to NEW WAYS OF SEEING if we allow it. I'm only starting to now. I'm starting to see new meaning in all of this. Thank you for letting me share it.
It doesn't mean illness doesn't trouble me - just that I will find new meaning as I go. I am becoming WHOLE - I am not diminished by my suffering. xx
I was surprised by the depth of my emotions for my friend L's doggie dying and how GRATEFUL I am he opened up to me over his dad's death 3 years ago. I often feel so useless anymore... and yet - when people call me and talk to me and say, "I haven't spoken of this to anyone before" it makes me realize that even if you're only talking to me for three minutes you are starting your healing. And stories heal. We all hurt. I NEED to be needed.
I FEEL inadequate I just do. I feel fat. I feel less than because I've gained so much weight over the last year and I'm annoyed by it. And I've been taught to JUDGE IT. And yet- my weight is NO INDICATOR of my ability to HEAL INSIDE. It is merely an indicator of my HEALTH. And well - my health is OBVIOUS. I've always been active and healthy - and now I am not. This progressive illness has chipped away and I am FINALLY able to see it. I am surprised that I am still unwilling to admit defeat. I am STILL saying, "I can find remission - I can heal - I can do this." It might not happen overnight - but people heal. I might have to go slowly - and I might not win ultimately- but I cannot stop trying. I cannot sink into the depths of giving up. I must still FIGHT for myself.
I'm surprised by this new agoraphobia - I'm afraid sometimes to go outside of my house - terrified really - ABSOLUTELY TERRIFIED. I'm not sure where this has come from. It has blindsided me. I am willing to live with it because I assume it will go away again. I have heard that it is common in lupus but I do not like it. I am allowing it. But I DO NOT LIKE IT. I just roll with it and hold myself close and say, "I'm sorry Melissa - that you are afraid to go out today and meet new people or see your friends." I have two doctors appointments this week and three friends to see and one new person who has been nothing but beautiful - and ALL gripe me with an ice cold fear - it grips like I am going to my own doom tomorrow at 1pm. I know it is not rational - and so I will go out anyway. But that does not make the fear any less.
What moved or touched me today?
I was touched by a quick hug by Nina. I really needed it. I was grateful for that hug. My body is skin hungry.
When she called me to say, "I am close by your house and would love to hug you," my eyes burst into tears and I gratefully accepted. I truly needed her hugs. She has so much positive beautiful energy. I don't think she knows that. Most people don't. Most people think their struggles make them hard- but our struggles make us BEAUTIFUL - give us compassion. Our suffering makes us WHOLE if we don't mire in it. And Nina does not mire - she radiates love. Her hug healed me today.
I was moved by a telephone call from my Jeannie who is so sad over her grandfather's death. And I felt her pain and I sat with it. And I am always so moved by the depth of other people's sadness. I do not LIKE to feel it- but I am able to be there through it. I can accept all your sad moments with you. And I did. I am profoundly moved that I have such complex and beautiful friends who hold on to so much hope and pain and sadness and beauty and share it with me.
What inspired me today?
I am inspired by the resilience of human emotions to THRIVE to be KIND to be generous with each other - to find COMPASSION and to connect and make MEANING of our lives. So many people are in the hospital and sick and yet they are still CONNECTING through their pain. It humbles me - truly humbles me. I am so SO grateful to know these people.
I began thinking about what I wanted to build when I started using twitter... I didn't want a "social media network" I wanted a healing network - of RELATIONSHIPS. And I have that now. I have people I truly care about sharing their lives with me. It is small and intimate and I'm so proud of so many people who are moving forward in their lives. And I have the ability to watch them grow and show them my own areas of vulnerability and growth.
How did I use new eyes to see old things today?
For those of us who are chronically sick... our true suffering are constant irritants in not only our own lives - but our families lives, our doctors lives, and those around us. Yet- if we move past it and go deeper, we can MOVE BEYOND what we've been TOLD to believe about it. WE CAN!
We do not have to believe we are permanently disabled. We do not have to believe we are going to suffer severe and progressively horrific losses. We do NOT have to BECOME a medical statistic. Our pain and suffering - our "afflictions" can turn into something beautiful. They truly can. We can heal each other. And we can heal those around us. WE CAN! We can be kind, generous, loving. WE CAN BE MORE THEN WE ARE "SUPPOSED TO BE." We can be gems. I know this. I have seen with new eyes my own value and those around me. I have been healed again and again by people when I have gotten quiet and allowed it. Everyone has worth. You have worth. I have worth.
Our pain and suffering has caused us to take on new roles and new ways of being - and those new ways give rise to NEW WAYS OF SEEING if we allow it. I'm only starting to now. I'm starting to see new meaning in all of this. Thank you for letting me share it.
It doesn't mean illness doesn't trouble me - just that I will find new meaning as I go. I am becoming WHOLE - I am not diminished by my suffering. xx
Sunday, July 18, 2010
My (Soon To Be) Internist Recommended a Book
She recommended that I read: How Doctors Think by Jerome Groopman M.D.
I read it last week... I loved this book. I'm glad she told me to read it. I'm going to talk about it here because I think it is ESPECIALLY powerful for my chronically ill friends to read.
This book discusses ways to raise questions with your doctor and ways to build relationships... and ways that your doctor might MISS important things... AND most importantly for people who are chronically ill - ways that doctors are taught NOT to see "zebras"... they are taught to "hear hooves and know they are horses and not zebras".. and yet- people like me and most of my friends are the zebras... we are people who have oddball diseases and /or we have multiple wackjob illnesses.
Doctors are taught that it quacks like a duck and IS a duck. So it is OUR JOB as a patient to ask simple questions that helps a doctor re-think quickly - so that he or she can assess our illness or complaint or symptom and think "maybe this is a zebra" or maybe this is not a duck but a quacking freakjob illness.... And ways WE as sick people address our doctors - calmly, posing questions to them like, "what's the worst thing this COULD be" makes our doctor stop and go back and RE-THINK it.
They are used to getting DOZENS of strep or flu or sprains a day. If they see us and our swollen glads or oddball things are lupus (or celiac/crohns/etc etc) it is NOT going to be the first thing they think of. It took many many MANY years for me to get diagnosed with lupus... in fact - my internist and my neurologist called the lupus flag before a rheumatologist did. (Because I was seeing SHITTY TURKY BUTT RHEUMIES with attitudes who needed to RETIRE in a field out back).
And this book also discusses how you DESERVE to go to a doctor you TRUST. And get 2nd and even in one case a woman who got a 14th opinion... b/c she had been dismissed SO MANY TIMES as a psych case when in fact, she had a REAL PHYSICAL DISEASE that would have ultimately killed her. She was NOT faking it. (just as you and I are NOT faking our seizures or our kidney failure or our strange lumps or anemia or lymphocytes). And by the time she went to a last resort doctor, he let her start her story from the beginning... and he LISTENED TO HER. And he didn't LOOK at her previous chart. He pushed it aside and let HER tell her story. He didn't listen to other doctors or THEIR diagnosis. He listened to HER. And he decided to THINK FOR HIMSELF. (The sign of a GOOD and not lazy doctor).
And THIS is what we need to help our doctors do. This book has helped me too.
I have to admit that I'm fairly seasoned... and I sort of did this on my own... but when it came time to do a CT scan or not - I posed a powerful question to my surgeon that helped HIM make the decision to give me one. I said, "Is it normal for ketchup and popcorn butter to come out of my butt doctor?"
It is graphic yes-- and gross yes. But THAT is what was happening. It was a way to help him find the hidden abscess he needed to find.- b/c CT scans are NOT something doctors are encouraged to just willy nilly order... and he was being "conservative.".. so my question was put out there to help HIM remember my symptoms. And it helped him see if there was any cancer masses... and it helped HIM know in his own mind what he wanted to look for and how high up. And I didn't need to say anything "medical" or anything other than WHAT I WAS EXPERIENCING in the way *I* was personally experiencing it. And my doctor needed to use that to translate into, "Order CT scan - look for xyz, and then proceed." Instead of simply saying, "You have an anal fissure." Which is what he WAS saying a month before.
The main questions this book reminds us to ask of our doctors are this :
"What else could it be?" - so your doctor might consider other options and think of multiple ranges of possibilities. I also like the idea of asking, "what's the worst it can be?" I don't usually do this- but it's a fair question and gets your doctor to be HONEST with you... just don't be a freak if he or she TELLS YOU.
"Is there anything that doesn't fit?" - this also helps your doctor think more BROADLY - scanning his or her brain to plug in an outlier scenario and avoid "confirmation bias"
And here is a biggie for me and most of my friends:
"Is it possible I have more than one problem?" - Most doctors do NOT wish to deal with it- but YES YES YES- probably you do. Multiple simultaneous diseases seriously confound anyone - even the best doctors. Easiest if you just pinpoint the worst culprit and then chip away- one at a time. I started with the seizures and went from there. When I could THINK STRAIGHT - things fell into place. I'm STILL working on getting my diseases organized (and new ones STILL like to crop up.) Auto-immunity is a battle sometimes... so is cancer... it comes back sometimes... you can handle it. DO NOT FEAR IT. Handle it. Deal with it. Life with it. But do NOT let your doctor be blind to the idea that you have MULTIPLE ISSUES.
Tell what you are most worried about. - this helps doctors create a wellness plan and either reassure you OR give you ideas for your own healing strategies. (I personally go in ASKING for visualization techniques before a surgery or big procedure and ask them to be on my healing team... and with my REAL TEAM PLAYERS I make sure we ARE on the same page about my health. I MUST BE LIKED. I must know my doctors like me. This book breaks it down big time.)
Lastly
Retell the story from the beginning. = sometimes hearing the story from the beginning helps doctors see your health in a new way.
--
As far as getting advice about your illness:
I generally avoid some online support areas and visit others... it is strange but true. The ones I avoid are the ones where people whine a great deal and there seems to be a vortex of depression and pain. NOW- YES WE LIVE WITH THAT... but there sometimes seems to be the impression that we MUST live with it permanently in order to be just the right kind of patient. We often seem to BRAINWASH each other into thinking we have to have JUST THE RIGHT symptoms.. I FEEL for all of us. I lived with douchbaggery too - and horrific doctors and I have been manhandled as well... But I try so hard not to let me BELIEVE that it is ME. I just get up and go to a different doctor.
And -- you can also get your doctors to re-assess by asking them to look in new ways or to HEAR YOU .. look with new eyes, to RE-THINK. Even though I was often in tears because of the pain (and me - seniorita never takes pain meds was hoovering them down during this time b/c of the intensity of it - for real) I TRIED to stay calm when I spoke to him about it.
For example - after my last surgeon said to me, "Melissa - you have an anal fissure- why are you fighting it?" I said, "You are not LISTENING TO ME. You are not HEARING ME. THIS is NOT the pain of an anal fissure- there is BURNING AND LEAKING COMING OUT OF MY BUTT THAT IS LIKE POPCORN BUTTER." That stopped him. He didn't REALIZE that I was having an infection as well. I had to iterate that to him more clearly.
And THEN the g/i docs found more more more. They had to work together like a team see- actually TALKING TO EACH OTHER... and we have all successfully collaborated TOGETHER. We did! But it took ME to stand there and KNOW MYSELF. It took ME to tell my doctors NO IT IS MORE THAN THAT. But in a way that was polite and awkward and all the strange and oddball ways I conduct myself... b/c I am my own person. You have to be TRUSTED - b/c he didn't SEE IT from where he stood... it is easier for him to SEE an anal fissure and not look any deeper. He saw a horse - not a zebra - and according to this book - if you are a zebra- you MUST get your doctors to see with new eyes and in more broadly and think more critically.
Whatever you do -- try to do it without whining. But DO IT. Be brave. This book was awesome. It gave me heart BECAUSE it also said something I knew in my guts.
This book also iterated that that any doctor who thinks another doctor doesn't like them will just LEAVE and go to a new doctor. They just go. And you know that I struggle to make a relationship... because you know that WE are harder to deal with.. and you know that once we have made a relationship the bonds are there... and WE - WE THE PATIENT have to go the extra mile. I've always taken it upon myself to extend more because of what I know about how draining it is to work with chronically ill patients... and because I know that I myself am more emotionally involved.
Even if you can stay clinical and withdrawn and don't need love and affection you could still benefit from this book... but then again - you are probably not clinically ill... and you are like anyone I know. If you ARE chronically ill - you SHOULD read this book. I'm so glad I did. Because it also discusses the dangers of being too well loved by your doctor OR judged or too well hated. You can pull them up hard either way and make your doctors give you good medical care - and make sure that they TREAT YOU.
I know for a fact that one doctor "spared me" chemo once when it was NOT in my best interested and it DID NOT DO ME ANY FAVORS. She just didn't want me to have to go through it. And I PAID AND PAID for it later. And when I went to a different doctor they were all, "why didn't your other doctor start this?" And I said, "She put me on the other stuff b/c she didn't want the harsh effects." And they snorted. And I realized, "She loved me too much to see me suffer." Sometimes you have to cruel to be kind. Being over-loved never ever means you cannot just treat the patient first -even if it hurts them physically. I NEVER judge my doctors for the treatments I'm on. I wish she had known that. Ultimately I had to leave her because I stopped trusting her for that choice -even though she is beautiful. And this book discusses ALL the ways a doctor can be great and can fail you YOU THE PATIENT.
AND how YOU- can help your doctor be his or her best. YOU SHOULD KNOW THESE. I wrote my surgeon a note before my scary surgery after our big falling out - telling him how much I trusted him and how we were a team. And I KNOW it bolstered us both. I hadn't read this book yet -- but I KNOW it did both of us so much good. I know it did. Patients and doctors are TEAM MATES- ESPECIALLY IF YOU ARE CHRONICALLY ILL AND NEEDY.
So - Put this on your put this on your next reading list and read it. I am going to tell my Internist THANK YOU SO MUCH! Because it changed me a bit... and it also gratified me that I have cobbled together some ways of doing this over the years -- with my own mistakes and messing up all mixed in.
Let me know what YOU think if you HAVE read it... Or when you do.
xo
M
I read it last week... I loved this book. I'm glad she told me to read it. I'm going to talk about it here because I think it is ESPECIALLY powerful for my chronically ill friends to read.
This book discusses ways to raise questions with your doctor and ways to build relationships... and ways that your doctor might MISS important things... AND most importantly for people who are chronically ill - ways that doctors are taught NOT to see "zebras"... they are taught to "hear hooves and know they are horses and not zebras".. and yet- people like me and most of my friends are the zebras... we are people who have oddball diseases and /or we have multiple wackjob illnesses.
Doctors are taught that it quacks like a duck and IS a duck. So it is OUR JOB as a patient to ask simple questions that helps a doctor re-think quickly - so that he or she can assess our illness or complaint or symptom and think "maybe this is a zebra" or maybe this is not a duck but a quacking freakjob illness.... And ways WE as sick people address our doctors - calmly, posing questions to them like, "what's the worst thing this COULD be" makes our doctor stop and go back and RE-THINK it.
They are used to getting DOZENS of strep or flu or sprains a day. If they see us and our swollen glads or oddball things are lupus (or celiac/crohns/etc etc) it is NOT going to be the first thing they think of. It took many many MANY years for me to get diagnosed with lupus... in fact - my internist and my neurologist called the lupus flag before a rheumatologist did. (Because I was seeing SHITTY TURKY BUTT RHEUMIES with attitudes who needed to RETIRE in a field out back).
And this book also discusses how you DESERVE to go to a doctor you TRUST. And get 2nd and even in one case a woman who got a 14th opinion... b/c she had been dismissed SO MANY TIMES as a psych case when in fact, she had a REAL PHYSICAL DISEASE that would have ultimately killed her. She was NOT faking it. (just as you and I are NOT faking our seizures or our kidney failure or our strange lumps or anemia or lymphocytes). And by the time she went to a last resort doctor, he let her start her story from the beginning... and he LISTENED TO HER. And he didn't LOOK at her previous chart. He pushed it aside and let HER tell her story. He didn't listen to other doctors or THEIR diagnosis. He listened to HER. And he decided to THINK FOR HIMSELF. (The sign of a GOOD and not lazy doctor).
And THIS is what we need to help our doctors do. This book has helped me too.
I have to admit that I'm fairly seasoned... and I sort of did this on my own... but when it came time to do a CT scan or not - I posed a powerful question to my surgeon that helped HIM make the decision to give me one. I said, "Is it normal for ketchup and popcorn butter to come out of my butt doctor?"
It is graphic yes-- and gross yes. But THAT is what was happening. It was a way to help him find the hidden abscess he needed to find.- b/c CT scans are NOT something doctors are encouraged to just willy nilly order... and he was being "conservative.".. so my question was put out there to help HIM remember my symptoms. And it helped him see if there was any cancer masses... and it helped HIM know in his own mind what he wanted to look for and how high up. And I didn't need to say anything "medical" or anything other than WHAT I WAS EXPERIENCING in the way *I* was personally experiencing it. And my doctor needed to use that to translate into, "Order CT scan - look for xyz, and then proceed." Instead of simply saying, "You have an anal fissure." Which is what he WAS saying a month before.
The main questions this book reminds us to ask of our doctors are this :
"What else could it be?" - so your doctor might consider other options and think of multiple ranges of possibilities. I also like the idea of asking, "what's the worst it can be?" I don't usually do this- but it's a fair question and gets your doctor to be HONEST with you... just don't be a freak if he or she TELLS YOU.
"Is there anything that doesn't fit?" - this also helps your doctor think more BROADLY - scanning his or her brain to plug in an outlier scenario and avoid "confirmation bias"
And here is a biggie for me and most of my friends:
"Is it possible I have more than one problem?" - Most doctors do NOT wish to deal with it- but YES YES YES- probably you do. Multiple simultaneous diseases seriously confound anyone - even the best doctors. Easiest if you just pinpoint the worst culprit and then chip away- one at a time. I started with the seizures and went from there. When I could THINK STRAIGHT - things fell into place. I'm STILL working on getting my diseases organized (and new ones STILL like to crop up.) Auto-immunity is a battle sometimes... so is cancer... it comes back sometimes... you can handle it. DO NOT FEAR IT. Handle it. Deal with it. Life with it. But do NOT let your doctor be blind to the idea that you have MULTIPLE ISSUES.
Tell what you are most worried about. - this helps doctors create a wellness plan and either reassure you OR give you ideas for your own healing strategies. (I personally go in ASKING for visualization techniques before a surgery or big procedure and ask them to be on my healing team... and with my REAL TEAM PLAYERS I make sure we ARE on the same page about my health. I MUST BE LIKED. I must know my doctors like me. This book breaks it down big time.)
Lastly
Retell the story from the beginning. = sometimes hearing the story from the beginning helps doctors see your health in a new way.
--
As far as getting advice about your illness:
I generally avoid some online support areas and visit others... it is strange but true. The ones I avoid are the ones where people whine a great deal and there seems to be a vortex of depression and pain. NOW- YES WE LIVE WITH THAT... but there sometimes seems to be the impression that we MUST live with it permanently in order to be just the right kind of patient. We often seem to BRAINWASH each other into thinking we have to have JUST THE RIGHT symptoms.. I FEEL for all of us. I lived with douchbaggery too - and horrific doctors and I have been manhandled as well... But I try so hard not to let me BELIEVE that it is ME. I just get up and go to a different doctor.
And -- you can also get your doctors to re-assess by asking them to look in new ways or to HEAR YOU .. look with new eyes, to RE-THINK. Even though I was often in tears because of the pain (and me - seniorita never takes pain meds was hoovering them down during this time b/c of the intensity of it - for real) I TRIED to stay calm when I spoke to him about it.
For example - after my last surgeon said to me, "Melissa - you have an anal fissure- why are you fighting it?" I said, "You are not LISTENING TO ME. You are not HEARING ME. THIS is NOT the pain of an anal fissure- there is BURNING AND LEAKING COMING OUT OF MY BUTT THAT IS LIKE POPCORN BUTTER." That stopped him. He didn't REALIZE that I was having an infection as well. I had to iterate that to him more clearly.
And THEN the g/i docs found more more more. They had to work together like a team see- actually TALKING TO EACH OTHER... and we have all successfully collaborated TOGETHER. We did! But it took ME to stand there and KNOW MYSELF. It took ME to tell my doctors NO IT IS MORE THAN THAT. But in a way that was polite and awkward and all the strange and oddball ways I conduct myself... b/c I am my own person. You have to be TRUSTED - b/c he didn't SEE IT from where he stood... it is easier for him to SEE an anal fissure and not look any deeper. He saw a horse - not a zebra - and according to this book - if you are a zebra- you MUST get your doctors to see with new eyes and in more broadly and think more critically.
Whatever you do -- try to do it without whining. But DO IT. Be brave. This book was awesome. It gave me heart BECAUSE it also said something I knew in my guts.
This book also iterated that that any doctor who thinks another doctor doesn't like them will just LEAVE and go to a new doctor. They just go. And you know that I struggle to make a relationship... because you know that WE are harder to deal with.. and you know that once we have made a relationship the bonds are there... and WE - WE THE PATIENT have to go the extra mile. I've always taken it upon myself to extend more because of what I know about how draining it is to work with chronically ill patients... and because I know that I myself am more emotionally involved.
Even if you can stay clinical and withdrawn and don't need love and affection you could still benefit from this book... but then again - you are probably not clinically ill... and you are like anyone I know. If you ARE chronically ill - you SHOULD read this book. I'm so glad I did. Because it also discusses the dangers of being too well loved by your doctor OR judged or too well hated. You can pull them up hard either way and make your doctors give you good medical care - and make sure that they TREAT YOU.
I know for a fact that one doctor "spared me" chemo once when it was NOT in my best interested and it DID NOT DO ME ANY FAVORS. She just didn't want me to have to go through it. And I PAID AND PAID for it later. And when I went to a different doctor they were all, "why didn't your other doctor start this?" And I said, "She put me on the other stuff b/c she didn't want the harsh effects." And they snorted. And I realized, "She loved me too much to see me suffer." Sometimes you have to cruel to be kind. Being over-loved never ever means you cannot just treat the patient first -even if it hurts them physically. I NEVER judge my doctors for the treatments I'm on. I wish she had known that. Ultimately I had to leave her because I stopped trusting her for that choice -even though she is beautiful. And this book discusses ALL the ways a doctor can be great and can fail you YOU THE PATIENT.
AND how YOU- can help your doctor be his or her best. YOU SHOULD KNOW THESE. I wrote my surgeon a note before my scary surgery after our big falling out - telling him how much I trusted him and how we were a team. And I KNOW it bolstered us both. I hadn't read this book yet -- but I KNOW it did both of us so much good. I know it did. Patients and doctors are TEAM MATES- ESPECIALLY IF YOU ARE CHRONICALLY ILL AND NEEDY.
So - Put this on your put this on your next reading list and read it. I am going to tell my Internist THANK YOU SO MUCH! Because it changed me a bit... and it also gratified me that I have cobbled together some ways of doing this over the years -- with my own mistakes and messing up all mixed in.
Let me know what YOU think if you HAVE read it... Or when you do.
xo
M
Saturday, July 17, 2010
Me Doing Standup About Being Sick
I try to be funny about being sick.
I have no idea how to make this blogger stuff work... I think this is a link to me doing some standup - yay!
http://relapsecomedy.com/video/2010-03-06%20Standup%205%20-%20Melissa%20Travis.wmv
(There is no doctor Rudy. All of my doctors are women except 2 guys - neither have made house calls.... all blow jobs happen in their office).
I have no idea how to make this blogger stuff work... I think this is a link to me doing some standup - yay!
http://relapsecomedy.com/video/2010-03-06%20Standup%205%20-%20Melissa%20Travis.wmv
(There is no doctor Rudy. All of my doctors are women except 2 guys - neither have made house calls.... all blow jobs happen in their office).
Friday, July 16, 2010
Seeing With New Eyes
I had a wonderful lunch date with a former student. It is so special to me to sit and watch people I love grow and change. She freely admits that before she took one of my classes she was "conservative." And now -- she has grown. It pleases me immensely because I ALWAYS LOVED teaching the lower level classes. Watching students come in with their views and seeing how they adapted their thoughts is BEAUTIFUL.
SOME of them leave with out changing a bit. Some of them grow into completely new beings in a small semester - and some, like my lunch partner - take on new ideas and continue to water them throughout their life.
Each semester I have a few "favorites" who I love. And oddly- my favorites seem to feel it in return. Those are the ones who wait after the semester and say, "I want to be friends now that the semester is over." And we do! Because I always say, "I cannot fuck you or be your friend while we are being professor and student - we must teach and learn." But as soon as the semester is over - I always yearn to be in their lives... and most of them just walk out the door and never come back... but a special few will wait and exchange e-mails with me or keep in my life.
And how I have cherished them!!! Today V said to me, "I always thought I was an exception to you - that you were just being friends with me just because. I'm so boring." And I had to laugh. I don't pity fuck my friends. I LOVE MY FRIENDS. I adore them!!! I am SO LUCKY for each and every person I have in my life. TRULY. I have not once single boring friend. It makes me laugh that people - especially someone with as brilliant and beautiful a mind as V would think she is boring.
But I realize that we are all taught to think that way about ourselves. I used to think I was not enough as well. I suppose that only recently I ALWAYS demanding MORE MORE MORE of myself.
I never walked in a single graduation. I just EXPECTED that I was SUPPOSED to be brilliant - SUPPOSED to be better - SUPPOSED to be this person. In ME it was just who I was. I never EVER celebrated myself. It wasn't until my mind started fighting and my body started fighting that I EVER stopped to say, "Ohmygod- how could I not respect that. How I not be in awe?"
And I never felt, "enough" -- I always felt that I could be MORE... MORE MORE MORE... More of everything. A better friend, prettier, thinner, wealthier. If we had a nice remote control fan upstairs I wanted one in the downstairs even. I NEVER felt that there was a reason to STOP and say, "enough." For me - STOPPING was the same as COMPLACENCY. Celebrating a job well done was the same as SLOVENLY.
I'm aghast that my body and my mind never snapped under the pressure. I was NEVER ever kind to myself. I never praised myself. I never allowed OTHERS to praise me. EVER. I never heard a single compliment until I began going to therapy and she started talking to my "frightened little girl who was afraid of being sick." ISN'T THAT AMAZING?
All the times that I would tell people compliments - and then be frustrated when they themselves couldn't or wouldn't take them... or didn't believe me... and now I understand why. We are NOT trained to be open and receptive to LOVE or to understanding how it works. We are afraid of our OWN SELF LOVE.
I was. I am unlearning it.
I find it AMAZING that being sick and learning how to PRAISE myself - be SELF-AWARE - be KIND to myself, not OVER-DO IT, take naps, take medications, rest... HOW THIS BEHAVIOR has led to me learning to LOVE MYSELF.
And - in so doing - I am learning to HEAR YOU - when you tell me loving words - I BELIEVE YOU. I HEAR YOU. And I am grateful for you. And when I in turn tell you how proud I am of you or how much I wish something for you... I MEAN MY WORDS.
--
YESTERDAY I went to see Doc M -- I wrote him a Thank you note - to express my gratitude for showing up before the surgery and going over some visualizations with me before the surgery. Only a few hours before that another woman had given ME a thank you note and told me I had changed her life... and I thought - THIS IS SO AMAZING. My entire life I have been getting notes from clients and students and I have never let them TRULY touch me. And here I am writing a note to a doctor. How funny is life. A table has turned. And honestly- I don't know if he will hear the note. Perhaps he will be ready to hear it. We are all on our own path. We each have our own journeys.
The other thing I found sad is that unlike my students there is no room for friendship with my favorite doctors. And I have several right now. There are several I love - TRULY LOVE. They have some saved my life and some touched my life. And there is no space for friendship. It is the "boundaries" of doctor patient. And even though some of us are no longer doctor patient - our relationship is over and done - it is as though it is just over. And I hate it. And I am grateful that at least with my students I can continue to know them and see them.
I MISS knowing the doctors who have touched my life. It is as though through their compassion they reach out and touched me and then just stepped back. And I cannot reach back. I'm allowed not to like it. It is HUMAN to want reciprocity. I could feel in both my GI doc and Doc M a sort of emptiness. At least my DI doc gave me her email address - so I can e-mail her and we can continue to communicate if she answers. And there is hope for a friendship. Because I truly love her. It is my biggest problem with the medical industrial complex -- it builds walls. It dehumanizes both the doctor and the patient. It hides the doctor behind a mask and the patient behind a number. And when something truly lovely happens - like friendship- it is though it doesn't matter -- it is as though the human spirit can repeatedly be ignored.
Now-- I UNDERSTAND and acknowledge the importance of BOUNDARIES. And I recognize this with my therapist and neuropsych because of the PERSONAL way that I disclose my "TMI"... THEY KNOW things about me - my deepest personal shit-- inside -- that you might ONLY tell to your best friends. So that they have to guard against their personal feelings for me and I automatically WANT to be their friends... but it is different with a doctor. They are sometimes privy to that - OF COURSE. But especially in the SHORTER TERM relationships I have with some specialists - I just don't understand why we must pretend that we are not humans with the capacity for friendship. Meanwhile - I am allowed to be friends with anyone else in the office because there are no "stringent" expectations on them to be "super human". I think most professors don't bother being friends with their students either. I am only friends with TWO of my professors I had through school -- and they seemed especially gratified when I looked them up and made the time to seek them out... and I think that I was already a professional made them feel comforted.
Maybe I'm just too open hearted and like to love people. I don't think there can be such a think. People are meant to love and be loved. Being sick has taught me the importance of that. No matter how much love you think you have - your heart has INFINITE CAPACITY for more love and friendship. It just does. You can get over extended if you think that means going out and drinking every night. But you HAVE the ability to love more. We all do. And we can all be loved more. We have INFINITE POTENTIAL FOR LOVE.
--
That aside -
I'm glad I got it out. It was sitting with me that I am going to miss my doctors almost as much as my friends... Because I am STILL coming to Atlanta to be treated by all my current doctors... so I'm only talking about the ones that are gone.
My doggie is doing ok. We were worried she had bladder cancer -but she is only experiencing old age incontinence. For this I am SO GRATEFUL. TRULY I AM. There has been enough sickness in this household. I already give my cat insulin 2x a day. I can give my doggie pee pee pills. I can do that! I just didn't want to watch another painful death or have to put her down. I love her with my whole heart and I would choose to give her a quality of life. But I think that right now - NOT having to make that choice makes me HAPPY and GRATEFUL.
My heart is lifting from last week. Seeing my dad - though still sick and slow - feel a bit better is also making me feel better.
And -- I'm using my attitude to change the world - on person at a time... Today the DMV woman TRIED HER BEST to help me. IN GEORGIA. Can you believe. THEY APOLOGIZED TO ME. And I said, "Thank you for your help - you two are sweeties." So - I still have to go to my ex's county next door to get my tag's renewed -- but people TRIED to help me. And only because I smiled and I was sweet and I was calm. And I feel like I can use my own patience that I have learned from HOURS OF HOSPITAL WAITING and waiting through PAIN.
These are gifts. They are backwards gifts... but they are gifts.
Find the gift in the hit - and accept it. I DO. I accept this gift.
When you can make state workers bend over backwards to help you - and then smile all over the place to be good to you -- you know that YOU have learned something in charm school... because I'm from the midwest. WE ARE NOT A CHARMING PEOPLE. Not the way southern women are charming. Something in my spirit has learned to accept what life is offering... feel what I need to feel... and go on.
When I was gardening I learned that if you wanted a flower to bloom beautifully you had to snip off most of the buds and only leave a few... there was a science to it - but that's the general principle. And it worked. The blooms are beautiful that way. And sometimes when I'm being pruned it hurts and it doesn't feel good and I cry about it. And thank YOU for catching the trimmings and telling me that all my parts are beautiful... I am grateful to you. And thank you for looking at the blooms of my life and telling me I am worthy.
So that is all. I have many varied feelings right now. And I had a lot of different things to say. But I am grateful. I have love. I have several friends visiting today and I am SO HAPPY for it. How have I been so lucky to accumulate this many friends? Really?
That said -- I want to tell you thank you for your kindness when my dad was sick. I was very upset and I needed your bolstering. Thank you for your comments, texts,calls and twitters. I love you for being part of my life.
xx
SOME of them leave with out changing a bit. Some of them grow into completely new beings in a small semester - and some, like my lunch partner - take on new ideas and continue to water them throughout their life.
Each semester I have a few "favorites" who I love. And oddly- my favorites seem to feel it in return. Those are the ones who wait after the semester and say, "I want to be friends now that the semester is over." And we do! Because I always say, "I cannot fuck you or be your friend while we are being professor and student - we must teach and learn." But as soon as the semester is over - I always yearn to be in their lives... and most of them just walk out the door and never come back... but a special few will wait and exchange e-mails with me or keep in my life.
And how I have cherished them!!! Today V said to me, "I always thought I was an exception to you - that you were just being friends with me just because. I'm so boring." And I had to laugh. I don't pity fuck my friends. I LOVE MY FRIENDS. I adore them!!! I am SO LUCKY for each and every person I have in my life. TRULY. I have not once single boring friend. It makes me laugh that people - especially someone with as brilliant and beautiful a mind as V would think she is boring.
But I realize that we are all taught to think that way about ourselves. I used to think I was not enough as well. I suppose that only recently I ALWAYS demanding MORE MORE MORE of myself.
I never walked in a single graduation. I just EXPECTED that I was SUPPOSED to be brilliant - SUPPOSED to be better - SUPPOSED to be this person. In ME it was just who I was. I never EVER celebrated myself. It wasn't until my mind started fighting and my body started fighting that I EVER stopped to say, "Ohmygod- how could I not respect that. How I not be in awe?"
And I never felt, "enough" -- I always felt that I could be MORE... MORE MORE MORE... More of everything. A better friend, prettier, thinner, wealthier. If we had a nice remote control fan upstairs I wanted one in the downstairs even. I NEVER felt that there was a reason to STOP and say, "enough." For me - STOPPING was the same as COMPLACENCY. Celebrating a job well done was the same as SLOVENLY.
I'm aghast that my body and my mind never snapped under the pressure. I was NEVER ever kind to myself. I never praised myself. I never allowed OTHERS to praise me. EVER. I never heard a single compliment until I began going to therapy and she started talking to my "frightened little girl who was afraid of being sick." ISN'T THAT AMAZING?
All the times that I would tell people compliments - and then be frustrated when they themselves couldn't or wouldn't take them... or didn't believe me... and now I understand why. We are NOT trained to be open and receptive to LOVE or to understanding how it works. We are afraid of our OWN SELF LOVE.
I was. I am unlearning it.
I find it AMAZING that being sick and learning how to PRAISE myself - be SELF-AWARE - be KIND to myself, not OVER-DO IT, take naps, take medications, rest... HOW THIS BEHAVIOR has led to me learning to LOVE MYSELF.
And - in so doing - I am learning to HEAR YOU - when you tell me loving words - I BELIEVE YOU. I HEAR YOU. And I am grateful for you. And when I in turn tell you how proud I am of you or how much I wish something for you... I MEAN MY WORDS.
--
YESTERDAY I went to see Doc M -- I wrote him a Thank you note - to express my gratitude for showing up before the surgery and going over some visualizations with me before the surgery. Only a few hours before that another woman had given ME a thank you note and told me I had changed her life... and I thought - THIS IS SO AMAZING. My entire life I have been getting notes from clients and students and I have never let them TRULY touch me. And here I am writing a note to a doctor. How funny is life. A table has turned. And honestly- I don't know if he will hear the note. Perhaps he will be ready to hear it. We are all on our own path. We each have our own journeys.
The other thing I found sad is that unlike my students there is no room for friendship with my favorite doctors. And I have several right now. There are several I love - TRULY LOVE. They have some saved my life and some touched my life. And there is no space for friendship. It is the "boundaries" of doctor patient. And even though some of us are no longer doctor patient - our relationship is over and done - it is as though it is just over. And I hate it. And I am grateful that at least with my students I can continue to know them and see them.
I MISS knowing the doctors who have touched my life. It is as though through their compassion they reach out and touched me and then just stepped back. And I cannot reach back. I'm allowed not to like it. It is HUMAN to want reciprocity. I could feel in both my GI doc and Doc M a sort of emptiness. At least my DI doc gave me her email address - so I can e-mail her and we can continue to communicate if she answers. And there is hope for a friendship. Because I truly love her. It is my biggest problem with the medical industrial complex -- it builds walls. It dehumanizes both the doctor and the patient. It hides the doctor behind a mask and the patient behind a number. And when something truly lovely happens - like friendship- it is though it doesn't matter -- it is as though the human spirit can repeatedly be ignored.
Now-- I UNDERSTAND and acknowledge the importance of BOUNDARIES. And I recognize this with my therapist and neuropsych because of the PERSONAL way that I disclose my "TMI"... THEY KNOW things about me - my deepest personal shit-- inside -- that you might ONLY tell to your best friends. So that they have to guard against their personal feelings for me and I automatically WANT to be their friends... but it is different with a doctor. They are sometimes privy to that - OF COURSE. But especially in the SHORTER TERM relationships I have with some specialists - I just don't understand why we must pretend that we are not humans with the capacity for friendship. Meanwhile - I am allowed to be friends with anyone else in the office because there are no "stringent" expectations on them to be "super human". I think most professors don't bother being friends with their students either. I am only friends with TWO of my professors I had through school -- and they seemed especially gratified when I looked them up and made the time to seek them out... and I think that I was already a professional made them feel comforted.
Maybe I'm just too open hearted and like to love people. I don't think there can be such a think. People are meant to love and be loved. Being sick has taught me the importance of that. No matter how much love you think you have - your heart has INFINITE CAPACITY for more love and friendship. It just does. You can get over extended if you think that means going out and drinking every night. But you HAVE the ability to love more. We all do. And we can all be loved more. We have INFINITE POTENTIAL FOR LOVE.
--
That aside -
I'm glad I got it out. It was sitting with me that I am going to miss my doctors almost as much as my friends... Because I am STILL coming to Atlanta to be treated by all my current doctors... so I'm only talking about the ones that are gone.
My doggie is doing ok. We were worried she had bladder cancer -but she is only experiencing old age incontinence. For this I am SO GRATEFUL. TRULY I AM. There has been enough sickness in this household. I already give my cat insulin 2x a day. I can give my doggie pee pee pills. I can do that! I just didn't want to watch another painful death or have to put her down. I love her with my whole heart and I would choose to give her a quality of life. But I think that right now - NOT having to make that choice makes me HAPPY and GRATEFUL.
My heart is lifting from last week. Seeing my dad - though still sick and slow - feel a bit better is also making me feel better.
And -- I'm using my attitude to change the world - on person at a time... Today the DMV woman TRIED HER BEST to help me. IN GEORGIA. Can you believe. THEY APOLOGIZED TO ME. And I said, "Thank you for your help - you two are sweeties." So - I still have to go to my ex's county next door to get my tag's renewed -- but people TRIED to help me. And only because I smiled and I was sweet and I was calm. And I feel like I can use my own patience that I have learned from HOURS OF HOSPITAL WAITING and waiting through PAIN.
These are gifts. They are backwards gifts... but they are gifts.
Find the gift in the hit - and accept it. I DO. I accept this gift.
When you can make state workers bend over backwards to help you - and then smile all over the place to be good to you -- you know that YOU have learned something in charm school... because I'm from the midwest. WE ARE NOT A CHARMING PEOPLE. Not the way southern women are charming. Something in my spirit has learned to accept what life is offering... feel what I need to feel... and go on.
When I was gardening I learned that if you wanted a flower to bloom beautifully you had to snip off most of the buds and only leave a few... there was a science to it - but that's the general principle. And it worked. The blooms are beautiful that way. And sometimes when I'm being pruned it hurts and it doesn't feel good and I cry about it. And thank YOU for catching the trimmings and telling me that all my parts are beautiful... I am grateful to you. And thank you for looking at the blooms of my life and telling me I am worthy.
So that is all. I have many varied feelings right now. And I had a lot of different things to say. But I am grateful. I have love. I have several friends visiting today and I am SO HAPPY for it. How have I been so lucky to accumulate this many friends? Really?
That said -- I want to tell you thank you for your kindness when my dad was sick. I was very upset and I needed your bolstering. Thank you for your comments, texts,calls and twitters. I love you for being part of my life.
xx
Saturday, July 10, 2010
When Your Dad is Sick When You are Sick (And You're Dealing With an Unwilling Moving) - Multiple Stressors
I've been feeling offish and strange lately- not really feeling like doing much or writing much... I feel- alienated from my LIFE I suppose. I guess I could blame my own illness - but the reality is that I'm USED to being sick.
The truth is that I'm not used to seeing my own father sick. I'm just not. I could tell he was progressively getting unwell - I could see that SOMETHING was wrong with him and I SUSPECTED it had to do with the (small/benign) tumor in his brain.. but it still made me uneasy. He hasn't been well - he's had headaches - he's been sleeping etc. And of course - when they did the MRI- it had been bleeding. OF COURSE-- you must always use your intuition... always.
I am a woman. I am a nurturer.
Yet- because I am sick - I so often shut out the voice inside me that screams "I'm sick I'm sick - red alert I'm sick"-- b/c I AM SICK. I just am. And my whole body freaks out. It does. My brain MUST cool its jets. I MUST get up and walk a small easy walk with my dog no matter what.
I KNOW I'M STARVING STARVING OMG I'M SOOO HUNGRY- but I CANNOT HOOVER that cheesecake... I do not want to get diabetes. I just don't want to. I have gained SO MUCH WEIGHT from all the preds and the thyroid/hashimotos etc. Even though now on synthroid I've lost about 20 pounds without even trying ... I really DO NOT want to spike my blood sugar- so I'm NOT eating excessively even though my entire body FEELS LIKE IT IS STARVING FOR FOOD.
I feel awful all the time yet I FORCE myself to get up and be supportive and be kind and CARE how other people are doing - GENUINELY CARE b/c it is HUMAN TO CARE. And I do not want to become a whiney moaning self-absorbed PATIENT. I know that CONNECTIONS AND LOVE are the only way to REMAIN totally in love with life and totally HUMAN.
But something in me snapped I think - when I saw my dad in the ER- and it was their "busiest day in 10 years" and we sat there for HOURS AND HOURS AND HOURS -- and I didn't want to let him leave AMA b/c I knew that he couldn't afford a CT scan only to come back the next day and insurance WOULDN'T PAY FOR IT - EVEN THE NEXT DAY... and I knew he was sick. And he was. They admitted him and the neurologist booted him straight to the neurosurgeon and the neuro-optomologist. And I was GLAD I waited it out...
But of COURSE - several of MY post-op wounds were seeping blood-- and the BEAUTIFUL sweet OVER-TAXED ER nurses were noticing my obvious pain... they were like - "OMG - you look like you need to be in here." And I said, "Sweetie - I have plenty of pain meds and such but I can't take them and drive - I just need to see to my father - as he's been taking care of ME! -- how the blind care of the blind!"
And one woman gave me a sonic fuck ton of wipes and pads and sterile gauze so I could de-MRSA the bathroom and sort of gauze up my self and stuff the pads in and off I went. I TOTALLY didn't feel like sitting there for 14 hours in the ER helped me.
I feel... almost "depressed." I feel zoned out. I feel like there is not enough rest. These last few days since my dad was admitted into the hospital no amount of sleep has been enough. I called my surgeon and told him I've been cycling a fever and then pulsing down to a normal temp all day and cycling back to 100.5 but then right back the next day to 98 - and he said he didn't think I had an infection and didn't feel good about calling in any antibiotics. He said - "I think you need to call your rheumatologist."
Then he said something SO. FUNNY. TO. ME. "If your fever goes up - go to the ER." AND I LAUGHED. "I NEVER GO TO THE ER EVER - EVER EVER EVER I would never go there unless my father were crashing."
The only reason an immuno-suppressed patient goes to the ER is because they want EVERY person on the planet to cough on them and give them every single disease known to man. People use the ER as their primary healthcare. It isn't fare but it is true- they do'nt HAVE access to good healthcare - so they go there with their nasty dirty bugs and viruses and they snot all over and they put their putrid bodies there and they LEAVE IT... WHY would I want to breathe it in or get it near my skin??
The FIRST thing I did when I got home was take a shower and wash it away the way I would when I gardened and got near poison ivy... except I USED SOAP... and near my wounds and steri-tape that was bleeding I USED ANTI-BIOTIC FUCKING SOAP. ewww.... get thee behind me nasty dirty bacteria and germs.
Meanwhile-- the point of this post is to say-- I haven't been able to write about this because it broke my heart to see my dad sick and lying there. It broke my heart to see my dad on an IV and in the hospital. It is hurting my heart to think of my dad with a brain bleed - even though they say it has stopped - he still needs more medical attention in Ohio--- and - MY ENTIRE BODY ACHES with pain because I love him.
I can deal with my own illness. I am aware that I am sick - more sick than most. I brace myself for it. I know I am sick. I just am. I work up good humor and I love life and I do my VERY BEST... but watching a man I love more than all the world be sick was HEART CRUSHING. It was was.
I realize that THIS FEELING is how every spouse and lover and parent feels when they watch people be sick... and I realize that it is part of life. And I get it. I GET IT. It is how we deal with it.
And I find it odd that I can deal with my sick friends - because WE KNOW how to be sick. We are each other's ROCKS.
I don't know why it is different to see my daddy be sick - but it was. It just was.
I am now feeling so myself... and afraid. It is like a certain anxiety has crept up - almost like a "depression"--- but not a 'blackness" or what have you-- more of a dee- and abiding inability to FEEL GOOD.. I feel exhausted and fatigued. I feel it difficult to get out of bed. I have a cycling fever. I feel completely as though someone threw me against a wall....
And yet - if you asked me HONESTLY I would tell you that it is merely my own PSYCHOLOGICAL reaction to all the stress (and I know that stress spikes lupus - so I get that it can be a chain reaction)... but it doesn't seem reasonable that I would so quickly be sick from a visit to the ER.
But I am attempting to see my Rheumy anyway if they can fit me in (which they really cannot. My back is hurting from the sitting -- and I'm slightly feverish - but not high... and my joints ache etc... yet I worry if we push any methyl preds etc I'll not heal as fully from all the operations... I'm off cell cept from some cancerous growths we're "watching" b/c I'm trying to let my body HEAL ON ITS OWN... and yet -- being off cell cept is NOT going well -- b/c I have been feeling over-stimmed.
My kidneys have been peeing blood - remember the last surgery...
oy.
I think maybe this is just hyper reaction to stress... I have regular visits to my therapist but I have never needed or used "anti-anxiety meds." I'm wondering if short term use of them might be a good idea.... or -- if I should whip out my trust VISUALIZATIONS AND SUCK IT THE FUCK UP.
I KNOW my dad is sick and i'm worried. I know I'm moving and I'm sad and stressed.
And to be honest - if this was a friend I'd be much more compassionate... If this were a friend I think I'd say, "I'm so sorry-- you are going through so much Melissa -- this is a lot to deal with. I'm so so sorry that you're afraid and that your dad is sick and you're dealing with the unknown and that you're dealing with your own disappointments and professional let down and the let down of being sick and not having what you want and feeling lack of control. I'm so sorry that you are feeling afraid and worried. You have so much support and love in your life. Now is a GOOD TIME to reach out and tap into the powerful amount of love and support that surround you. You are now and always will be loved."
THAT is what I would tell any of my friends who were in my shoes. I wouldn't ignore them or tell them to suck it up. I would show up for them. I would tell them to go to their doctors and explain the heightened stress... I would acknowledge the risks in their already active lupus and other auto-immune issues... and -- I would hug them and say I'd pray for them... I might even say a prayer with them if they wanted... I'm not a CRAZY RELIGIOUS person - but I know that prayer WORKS.
So there. I do deserve compassion and love - and I need to calm down and give it to myself. This is a lot to go through. I'm afraid of leaving my medical care - I'm sad to leave my friends - I will miss Atlanta, and I'm SHAKEN- SAD AND UPSET at seeing my own father sick.
That is all...
The truth is that I'm not used to seeing my own father sick. I'm just not. I could tell he was progressively getting unwell - I could see that SOMETHING was wrong with him and I SUSPECTED it had to do with the (small/benign) tumor in his brain.. but it still made me uneasy. He hasn't been well - he's had headaches - he's been sleeping etc. And of course - when they did the MRI- it had been bleeding. OF COURSE-- you must always use your intuition... always.
I am a woman. I am a nurturer.
Yet- because I am sick - I so often shut out the voice inside me that screams "I'm sick I'm sick - red alert I'm sick"-- b/c I AM SICK. I just am. And my whole body freaks out. It does. My brain MUST cool its jets. I MUST get up and walk a small easy walk with my dog no matter what.
I KNOW I'M STARVING STARVING OMG I'M SOOO HUNGRY- but I CANNOT HOOVER that cheesecake... I do not want to get diabetes. I just don't want to. I have gained SO MUCH WEIGHT from all the preds and the thyroid/hashimotos etc. Even though now on synthroid I've lost about 20 pounds without even trying ... I really DO NOT want to spike my blood sugar- so I'm NOT eating excessively even though my entire body FEELS LIKE IT IS STARVING FOR FOOD.
I feel awful all the time yet I FORCE myself to get up and be supportive and be kind and CARE how other people are doing - GENUINELY CARE b/c it is HUMAN TO CARE. And I do not want to become a whiney moaning self-absorbed PATIENT. I know that CONNECTIONS AND LOVE are the only way to REMAIN totally in love with life and totally HUMAN.
But something in me snapped I think - when I saw my dad in the ER- and it was their "busiest day in 10 years" and we sat there for HOURS AND HOURS AND HOURS -- and I didn't want to let him leave AMA b/c I knew that he couldn't afford a CT scan only to come back the next day and insurance WOULDN'T PAY FOR IT - EVEN THE NEXT DAY... and I knew he was sick. And he was. They admitted him and the neurologist booted him straight to the neurosurgeon and the neuro-optomologist. And I was GLAD I waited it out...
But of COURSE - several of MY post-op wounds were seeping blood-- and the BEAUTIFUL sweet OVER-TAXED ER nurses were noticing my obvious pain... they were like - "OMG - you look like you need to be in here." And I said, "Sweetie - I have plenty of pain meds and such but I can't take them and drive - I just need to see to my father - as he's been taking care of ME! -- how the blind care of the blind!"
And one woman gave me a sonic fuck ton of wipes and pads and sterile gauze so I could de-MRSA the bathroom and sort of gauze up my self and stuff the pads in and off I went. I TOTALLY didn't feel like sitting there for 14 hours in the ER helped me.
I feel... almost "depressed." I feel zoned out. I feel like there is not enough rest. These last few days since my dad was admitted into the hospital no amount of sleep has been enough. I called my surgeon and told him I've been cycling a fever and then pulsing down to a normal temp all day and cycling back to 100.5 but then right back the next day to 98 - and he said he didn't think I had an infection and didn't feel good about calling in any antibiotics. He said - "I think you need to call your rheumatologist."
Then he said something SO. FUNNY. TO. ME. "If your fever goes up - go to the ER." AND I LAUGHED. "I NEVER GO TO THE ER EVER - EVER EVER EVER I would never go there unless my father were crashing."
The only reason an immuno-suppressed patient goes to the ER is because they want EVERY person on the planet to cough on them and give them every single disease known to man. People use the ER as their primary healthcare. It isn't fare but it is true- they do'nt HAVE access to good healthcare - so they go there with their nasty dirty bugs and viruses and they snot all over and they put their putrid bodies there and they LEAVE IT... WHY would I want to breathe it in or get it near my skin??
The FIRST thing I did when I got home was take a shower and wash it away the way I would when I gardened and got near poison ivy... except I USED SOAP... and near my wounds and steri-tape that was bleeding I USED ANTI-BIOTIC FUCKING SOAP. ewww.... get thee behind me nasty dirty bacteria and germs.
Meanwhile-- the point of this post is to say-- I haven't been able to write about this because it broke my heart to see my dad sick and lying there. It broke my heart to see my dad on an IV and in the hospital. It is hurting my heart to think of my dad with a brain bleed - even though they say it has stopped - he still needs more medical attention in Ohio--- and - MY ENTIRE BODY ACHES with pain because I love him.
I can deal with my own illness. I am aware that I am sick - more sick than most. I brace myself for it. I know I am sick. I just am. I work up good humor and I love life and I do my VERY BEST... but watching a man I love more than all the world be sick was HEART CRUSHING. It was was.
I realize that THIS FEELING is how every spouse and lover and parent feels when they watch people be sick... and I realize that it is part of life. And I get it. I GET IT. It is how we deal with it.
And I find it odd that I can deal with my sick friends - because WE KNOW how to be sick. We are each other's ROCKS.
I don't know why it is different to see my daddy be sick - but it was. It just was.
I am now feeling so myself... and afraid. It is like a certain anxiety has crept up - almost like a "depression"--- but not a 'blackness" or what have you-- more of a dee- and abiding inability to FEEL GOOD.. I feel exhausted and fatigued. I feel it difficult to get out of bed. I have a cycling fever. I feel completely as though someone threw me against a wall....
And yet - if you asked me HONESTLY I would tell you that it is merely my own PSYCHOLOGICAL reaction to all the stress (and I know that stress spikes lupus - so I get that it can be a chain reaction)... but it doesn't seem reasonable that I would so quickly be sick from a visit to the ER.
But I am attempting to see my Rheumy anyway if they can fit me in (which they really cannot. My back is hurting from the sitting -- and I'm slightly feverish - but not high... and my joints ache etc... yet I worry if we push any methyl preds etc I'll not heal as fully from all the operations... I'm off cell cept from some cancerous growths we're "watching" b/c I'm trying to let my body HEAL ON ITS OWN... and yet -- being off cell cept is NOT going well -- b/c I have been feeling over-stimmed.
My kidneys have been peeing blood - remember the last surgery...
oy.
I think maybe this is just hyper reaction to stress... I have regular visits to my therapist but I have never needed or used "anti-anxiety meds." I'm wondering if short term use of them might be a good idea.... or -- if I should whip out my trust VISUALIZATIONS AND SUCK IT THE FUCK UP.
I KNOW my dad is sick and i'm worried. I know I'm moving and I'm sad and stressed.
And to be honest - if this was a friend I'd be much more compassionate... If this were a friend I think I'd say, "I'm so sorry-- you are going through so much Melissa -- this is a lot to deal with. I'm so so sorry that you're afraid and that your dad is sick and you're dealing with the unknown and that you're dealing with your own disappointments and professional let down and the let down of being sick and not having what you want and feeling lack of control. I'm so sorry that you are feeling afraid and worried. You have so much support and love in your life. Now is a GOOD TIME to reach out and tap into the powerful amount of love and support that surround you. You are now and always will be loved."
THAT is what I would tell any of my friends who were in my shoes. I wouldn't ignore them or tell them to suck it up. I would show up for them. I would tell them to go to their doctors and explain the heightened stress... I would acknowledge the risks in their already active lupus and other auto-immune issues... and -- I would hug them and say I'd pray for them... I might even say a prayer with them if they wanted... I'm not a CRAZY RELIGIOUS person - but I know that prayer WORKS.
So there. I do deserve compassion and love - and I need to calm down and give it to myself. This is a lot to go through. I'm afraid of leaving my medical care - I'm sad to leave my friends - I will miss Atlanta, and I'm SHAKEN- SAD AND UPSET at seeing my own father sick.
That is all...
Thursday, July 8, 2010
Read My Latest Column!
Most of you are my twitter-bugs so you know this: Thank you for the love and support on my dad who is in the hospital this week... it's been a rough patch with me just getting over some surgery. We're waiting on his MRI stuff - but he's resting comfortably and my mom came down from Ohio. I find it ironic that HE came here to take care of me and now she had to come take care of both of us. How the blind lead the blind. Soon - we'll all be up in Ohio making each other miserable and I'll be boring myself into remission so it will be all dandy. I feel bad though - that dad had to get sick here away from his own doctors and care. (He has a small brain tumor - so I'm concerned that it has grown and that is the cause of it... his neurosurgeon is back in Ohio - so we'll be sending the results back up there... meanwhile -- MUCH LOVE TO YOU ALL).
ON TO MY LATEST:
Read My Latest Thingy! This is a 2nd in a series on Building Good Doctor Patient Relationships. After much discussion and debate from readers last week I've decided to tell you how I PERSONALLY leave a shitty doctor.
Here it is:
http://dearthyroid.org/chronic-snarkopolist-the-snarkopolist-method-to-breaking-up-with-a-shitty-doctor-50-errr-3-ways-to-leave-your-doctor/
ON TO MY LATEST:
Read My Latest Thingy! This is a 2nd in a series on Building Good Doctor Patient Relationships. After much discussion and debate from readers last week I've decided to tell you how I PERSONALLY leave a shitty doctor.
Here it is:
http://dearthyroid.org/chronic-snarkopolist-the-snarkopolist-method-to-breaking-up-with-a-shitty-doctor-50-errr-3-ways-to-leave-your-doctor/
Monday, July 5, 2010
Evening Blues
I thought I could write about all that loss and do it pragmatically- but discussing it was hard - and now I am feeling lost and sad. I feel stolen from and nearing despair.
Nothing in life feels right at the moment. I am hurting - but not bad enough for pain meds - I feel bored - but nothing I do feels fun enough to occupy my mind. I have tried reading but the words bring me to tears every time - for every writer is more poignant than the last.
I suppose I should just give in to it and be sad and terribly alone and morose tonight. It is leading up to it.
I am struggling not to feel resentment at "happy people" right now. I realize that we all have loss -- BUT I AM ANGRY not just on my own behalf - but on behalf of all the people that I love so dearly - that we seem to have such a disproportionate amount of loss. I AM ANGRY. I AM ANGRY. IT IS NOT FAIR.
I AM ANGRY RIGHT NOW.
I am crying. I am angry and sad. It is not fair all these losses.
And even while I write this I am getting texts from the people I love the most telling me how much they love me... AND HOW CAN I HAVE SUCH SADNESS WHEN I HAVE SO MUCH LOVE IN MY LIFE?? Isn't it strange - that the people who have the most pain and loss have the most love too?
Isn't the bizarre? I find it so.
My heart aches right now and so I must tell you about it - to release it. I must. I wish I could write it into song and poetry but there is no muse right now so willing or able - and so you just get words.
I am afraid to move to Ohio. I am sad that I am not as creative right now as I want. I miss my best friends who are strewn across the country and even the world right now. My heart is breaking for some of the sad news I have endured over the last week. Just when I think I am capable of loving and loving and loving someone will tell me something more heartbreaking than the last...
And still I love more and more.
And then something shocking happens. Today it was that I heard FABULOUS NEWS - BEAUTIFUL NEWS - POWERFULLY HAPPY NEWS...
And today as usually it was the stick that breaks me.
I'm not JEALOUS of that good news. I'm just... I'm wondering how on earth we continue to spin the way we do. And yet we do. And yet we do.
I am HAPPY for other peoples good news. I just wish that I was the one giving it - I wish I was the one overflowing with joy for a change - and my friends too. I wish that strength of character and body we have wasn't necessary... and that for a change we could just go back to being HAPPY. I miss those days. I miss those days. (Whatever they were).
My heart is hurting not just for me but for everyone. I'm not even sure why right now.. The contradictory mix of happy and sad is so confusing. And I hate that some people seem to get so oddly rewarded for so much nothing and some people seem to be continually punished when they are the most beautiful and compassionate people I've ever met.
And SOME people deserve their happiness.
When I got married Ryan told me he HATED my husband and EVERYONE knew he was a "weak man." NO ONE WAS SUPRRISED WHEN HE DIVORCED ME when I sick. NO ONE. When I asked Ryan why he never said anything - he said, "Melissa - you were so happy - it would have been like kicking a puppy." I guess b/c happiness does not come easily to me -- and so when I was FINALLY HAPPY-- no one wanted to mess it up - no one wanted to challenge it. Everyone wanted me to just BE HAPPY. Even though it was a "fairy tale."
And that is heart breaking to me -- that the "only" happiness I have known wasn't real. It wasn't REAL. It was a fabrication that I made up in my head-- b/c in my GUTS I knew that I was the stronger of the two of us. I have always been the stronger person in any romantic relationship I have ever had. I am ALWAYS the strong one. And I have always wanted to be an equal partner with someone who was able to TAKE CARE OF ME too. BE STRONG FOR ME. Let me be SAFE too. And I don't think I will ever live to see the day. And that sucks.
There. Lots off my chest.
Tears.
Nothing in life feels right at the moment. I am hurting - but not bad enough for pain meds - I feel bored - but nothing I do feels fun enough to occupy my mind. I have tried reading but the words bring me to tears every time - for every writer is more poignant than the last.
I suppose I should just give in to it and be sad and terribly alone and morose tonight. It is leading up to it.
I am struggling not to feel resentment at "happy people" right now. I realize that we all have loss -- BUT I AM ANGRY not just on my own behalf - but on behalf of all the people that I love so dearly - that we seem to have such a disproportionate amount of loss. I AM ANGRY. I AM ANGRY. IT IS NOT FAIR.
I AM ANGRY RIGHT NOW.
I am crying. I am angry and sad. It is not fair all these losses.
And even while I write this I am getting texts from the people I love the most telling me how much they love me... AND HOW CAN I HAVE SUCH SADNESS WHEN I HAVE SO MUCH LOVE IN MY LIFE?? Isn't it strange - that the people who have the most pain and loss have the most love too?
Isn't the bizarre? I find it so.
My heart aches right now and so I must tell you about it - to release it. I must. I wish I could write it into song and poetry but there is no muse right now so willing or able - and so you just get words.
I am afraid to move to Ohio. I am sad that I am not as creative right now as I want. I miss my best friends who are strewn across the country and even the world right now. My heart is breaking for some of the sad news I have endured over the last week. Just when I think I am capable of loving and loving and loving someone will tell me something more heartbreaking than the last...
And still I love more and more.
And then something shocking happens. Today it was that I heard FABULOUS NEWS - BEAUTIFUL NEWS - POWERFULLY HAPPY NEWS...
And today as usually it was the stick that breaks me.
I'm not JEALOUS of that good news. I'm just... I'm wondering how on earth we continue to spin the way we do. And yet we do. And yet we do.
I am HAPPY for other peoples good news. I just wish that I was the one giving it - I wish I was the one overflowing with joy for a change - and my friends too. I wish that strength of character and body we have wasn't necessary... and that for a change we could just go back to being HAPPY. I miss those days. I miss those days. (Whatever they were).
My heart is hurting not just for me but for everyone. I'm not even sure why right now.. The contradictory mix of happy and sad is so confusing. And I hate that some people seem to get so oddly rewarded for so much nothing and some people seem to be continually punished when they are the most beautiful and compassionate people I've ever met.
And SOME people deserve their happiness.
When I got married Ryan told me he HATED my husband and EVERYONE knew he was a "weak man." NO ONE WAS SUPRRISED WHEN HE DIVORCED ME when I sick. NO ONE. When I asked Ryan why he never said anything - he said, "Melissa - you were so happy - it would have been like kicking a puppy." I guess b/c happiness does not come easily to me -- and so when I was FINALLY HAPPY-- no one wanted to mess it up - no one wanted to challenge it. Everyone wanted me to just BE HAPPY. Even though it was a "fairy tale."
And that is heart breaking to me -- that the "only" happiness I have known wasn't real. It wasn't REAL. It was a fabrication that I made up in my head-- b/c in my GUTS I knew that I was the stronger of the two of us. I have always been the stronger person in any romantic relationship I have ever had. I am ALWAYS the strong one. And I have always wanted to be an equal partner with someone who was able to TAKE CARE OF ME too. BE STRONG FOR ME. Let me be SAFE too. And I don't think I will ever live to see the day. And that sucks.
There. Lots off my chest.
Tears.
Car Accident - A Loss Recognized
It is odd, when talking with my fellow lupies and any of my past clients or sick cancer/chemo friends -- how parallel our lives are.
The other day Jeannie mentioned it being the 6th anniversary of her car accident and how she is still really affected by it... and it sort of rushed me -- my own car accident. THE ONE that came right after our return from our "2nd honeymoon" -- our beautiful Mediterranean trip. I had already been getting sick for years- but I was on my way to get a massage to get the kinks out of my back and on July 2 2007 -a woman hit me- followed by a 2nd driver. There were witnesses and I lost consciousness. I was taken by ambulance to the nearest hospital where they checked my head and spine and I was released.
I suffered horrific post-concussive migraines for a month after that and started having neurogenic bladder - which was found by a urologist. I began having terrible seizures - and a neurologist found it - and he found all the terrible things one by one. He held my hand and said to me, "Melissa - I don't know what is going on but I'm a doctor who LOVES complicated cases- I WILL FIGURED THIS OUT - WE WILL HELP YOU." And he stuck with me the entire way. HE NEVER TREATED ME BADLY. And he got angry when other doctors would dismiss me or act as though I were faking my illnesses or my symptoms.
He would send them my eeg copies or my blood tests saying, "You cannot fake a sed rate - you cannot fake your positive ANA - you cannot fake your eeg - Melissa - we WILL find out what is happening - have faith."
To be honest - I LOST FAITH along the way. My husband divorced me and I lost many many friends. I lost my home, my beloved garden, and much of what loved. I lost my job - and a great deal of what I thought would make MELISSA be MELISSA. But what happened is that suffering and pain are what makes us whole if we release it to each other - and let each other know our truth. I did not get stuck there - I cried it out. I bled my pain into the world - on stage and the page. I cried.
I lost more friends than I care to count. Many of them said, "Melissa- I cannot be stage with you if I cannot trust you." And I could not help them - because I could not trust myself. I WANTED to be perfect. I wanted to over achieve - but I could not make my body work. I could not stop having seizures or choreia or all the early onset dementia or the brain swelling that was happening. It broke my spirit sometimes because comedy is my healing method.
But I learned something new - my tears are also healing. And when I cried - there was ALWAYS SOMEONE TO CRY TO- ALWAYS A FRIEND I HAD LOVED MORE WHO CRIED WITH ME. I have never been alone. I may have felt alone but I have never truly been alone. The world is full of lonely people- but I have loved with my whole heart - and I go into the world full of love - even when it is broken. And so people have always been willing to mend it - even when I felt broken in half.
And these times were difficult for me to accept love - but I did. And they were my most healing moments. People came through for me when I was my weakest. They brought me love and food and company when I could not leave my home. And I healed and healed and healed.
And now my body is somewhat better - my bloodwork looks better- my functioning is better- I can walk on my own even - no cane (often) and no wheelchair! My brain works frequently - and when it does not - all I need is a booster of liquid preds and calm it down and the swelling goes down within a day - and I am sane again. Though the fear never goes away that it get worse or break completely- I must have trust that THIS is my life.
So daily - I look back on the accident and I realize that there were gifts in that hit. There were moments when I thought I was going to die. There were moments I wish I HAD died. There were moments I wished I could kill people b/c I thought it tremendously unfair that they could live happily and toss me into the rubbish. And now I am living my best life. And if you had asked me three or four years ago - would I be happy living this life I would tell you I would rather BE dead. And now - I am just living.
I am not questioning it. I am living. Day to day. There is great sadness and great joy. There is pain and there is happiness. And there is plenty of gratitude every moment of my life. And it is the gratitude I think that is making all the difference. I don't think I ever knew how to be truly grateful - for I never really knew REAL LOSS before. I think only the truly sick or the truly poor or those who have lost someone they love to death (or the very abused/afraid) know what great loss is. I mean GREAT LOSS - where you will never walk again or never breathe right again or have the use of your body or poop again. GREAT LOSS. And with great loss comes GREAT FREEDOM and a GREAT GRATITUDE. I am not sure why I was never able to see how many WONDERFUL THINGS I had in my life - but I couldn't. And I doubt if read this three ago and it was written by someone else I could have either.
Somehow my losses have been a lived experience - and the suffering and pain and joy and fear and love of all my friends and support networks have made my life MORE COMPLETE. It just has. I do not LIKE my life right now - but I am living it fully. I am in LOVE with where I am even if I do not prefer to be here. I hope this makes sense.
And I am looking back not whimsically but as a respectful nod my loss - all of them -- LOSSES -
my baby- my husband- my house- my garden - my trust - I have named you again and again - but today- I name you with respect. You deserve that. The car accident that really tipped the hand and brought down a hail of auto-immunity deserves to be given this moment. I give you respect.
All loss is pain. And all pain deserves recognition. And in recognizing it I recognize my humanity and that I am at one with everyone else. And with you I AM YOU. And we are together in this. And by being together I LOVE YOU and I ACCEPT YOUR LOVE. And we make this road easier for each other. We hear each other. And by hearing each other WE HEAL EACH OTHER. And I AM GRATEFUL FOR THAT.
I love you.
Thank you.
xx
M
The other day Jeannie mentioned it being the 6th anniversary of her car accident and how she is still really affected by it... and it sort of rushed me -- my own car accident. THE ONE that came right after our return from our "2nd honeymoon" -- our beautiful Mediterranean trip. I had already been getting sick for years- but I was on my way to get a massage to get the kinks out of my back and on July 2 2007 -a woman hit me- followed by a 2nd driver. There were witnesses and I lost consciousness. I was taken by ambulance to the nearest hospital where they checked my head and spine and I was released.
I suffered horrific post-concussive migraines for a month after that and started having neurogenic bladder - which was found by a urologist. I began having terrible seizures - and a neurologist found it - and he found all the terrible things one by one. He held my hand and said to me, "Melissa - I don't know what is going on but I'm a doctor who LOVES complicated cases- I WILL FIGURED THIS OUT - WE WILL HELP YOU." And he stuck with me the entire way. HE NEVER TREATED ME BADLY. And he got angry when other doctors would dismiss me or act as though I were faking my illnesses or my symptoms.
He would send them my eeg copies or my blood tests saying, "You cannot fake a sed rate - you cannot fake your positive ANA - you cannot fake your eeg - Melissa - we WILL find out what is happening - have faith."
To be honest - I LOST FAITH along the way. My husband divorced me and I lost many many friends. I lost my home, my beloved garden, and much of what loved. I lost my job - and a great deal of what I thought would make MELISSA be MELISSA. But what happened is that suffering and pain are what makes us whole if we release it to each other - and let each other know our truth. I did not get stuck there - I cried it out. I bled my pain into the world - on stage and the page. I cried.
I lost more friends than I care to count. Many of them said, "Melissa- I cannot be stage with you if I cannot trust you." And I could not help them - because I could not trust myself. I WANTED to be perfect. I wanted to over achieve - but I could not make my body work. I could not stop having seizures or choreia or all the early onset dementia or the brain swelling that was happening. It broke my spirit sometimes because comedy is my healing method.
But I learned something new - my tears are also healing. And when I cried - there was ALWAYS SOMEONE TO CRY TO- ALWAYS A FRIEND I HAD LOVED MORE WHO CRIED WITH ME. I have never been alone. I may have felt alone but I have never truly been alone. The world is full of lonely people- but I have loved with my whole heart - and I go into the world full of love - even when it is broken. And so people have always been willing to mend it - even when I felt broken in half.
And these times were difficult for me to accept love - but I did. And they were my most healing moments. People came through for me when I was my weakest. They brought me love and food and company when I could not leave my home. And I healed and healed and healed.
And now my body is somewhat better - my bloodwork looks better- my functioning is better- I can walk on my own even - no cane (often) and no wheelchair! My brain works frequently - and when it does not - all I need is a booster of liquid preds and calm it down and the swelling goes down within a day - and I am sane again. Though the fear never goes away that it get worse or break completely- I must have trust that THIS is my life.
So daily - I look back on the accident and I realize that there were gifts in that hit. There were moments when I thought I was going to die. There were moments I wish I HAD died. There were moments I wished I could kill people b/c I thought it tremendously unfair that they could live happily and toss me into the rubbish. And now I am living my best life. And if you had asked me three or four years ago - would I be happy living this life I would tell you I would rather BE dead. And now - I am just living.
I am not questioning it. I am living. Day to day. There is great sadness and great joy. There is pain and there is happiness. And there is plenty of gratitude every moment of my life. And it is the gratitude I think that is making all the difference. I don't think I ever knew how to be truly grateful - for I never really knew REAL LOSS before. I think only the truly sick or the truly poor or those who have lost someone they love to death (or the very abused/afraid) know what great loss is. I mean GREAT LOSS - where you will never walk again or never breathe right again or have the use of your body or poop again. GREAT LOSS. And with great loss comes GREAT FREEDOM and a GREAT GRATITUDE. I am not sure why I was never able to see how many WONDERFUL THINGS I had in my life - but I couldn't. And I doubt if read this three ago and it was written by someone else I could have either.
Somehow my losses have been a lived experience - and the suffering and pain and joy and fear and love of all my friends and support networks have made my life MORE COMPLETE. It just has. I do not LIKE my life right now - but I am living it fully. I am in LOVE with where I am even if I do not prefer to be here. I hope this makes sense.
And I am looking back not whimsically but as a respectful nod my loss - all of them -- LOSSES -
my baby- my husband- my house- my garden - my trust - I have named you again and again - but today- I name you with respect. You deserve that. The car accident that really tipped the hand and brought down a hail of auto-immunity deserves to be given this moment. I give you respect.
All loss is pain. And all pain deserves recognition. And in recognizing it I recognize my humanity and that I am at one with everyone else. And with you I AM YOU. And we are together in this. And by being together I LOVE YOU and I ACCEPT YOUR LOVE. And we make this road easier for each other. We hear each other. And by hearing each other WE HEAL EACH OTHER. And I AM GRATEFUL FOR THAT.
I love you.
Thank you.
xx
M
Saturday, July 3, 2010
Best Surgery Experience
In opposites land - I had the best surgery experience of my life. Completely opposite of my last experience at a different hospital. When I got there - people were pleasant and considerate to me and my family. I had my very own nurse - "Nurse Wanda" and she stayed with me the entire time. (I also didn't bleed everywhere and start my period - but even so ...). Nurse Wanda got my IV started on the FIRST STAB and then signed my iv line tape which cracked me up. We sat there telling jokes and I made her laugh.
She's been a nurse for over 30 years... she's a no nonsense Georgia black woman - but took an instant liking to me. She was like - "you can't butter me up." And I said, "Nurse Wanda, I'm so terrified, I've already buttered you up- you've signed my iv line - you can't fool me."
And she said, "You can't fool me either Melissa - I know you're scared- you act just as silly and outgoing as me when I'm nervous as hell.' And we laughed and carried on. She went and got little kids stickers and a tiara one and tapped my head with it. And then Told me, "You look like you been rode hard and hug up wet too many times my friend-- these are to reward you. And handed me a HANDFUL of princess stickers.
By then we were both in hysterics. We just were.
It was SUCH a funny morning. So OPPOSITE of being left alone in a tent to worry and fret before my gb/sm intestine surgery. And then - when the Anesthesiologist came for me - she walked me to the elevator and got my dad and Nina and showed them were to meet me when I was post-surgery -- so they could talk to my surgeon.
And the Anesthesiologist and I were going to converse but first my surgeon came over... Doc M. And he was still snarky from my little last minute huffy note. And he said, "You know all the risks?" And I said, "Yep- ate that fear for breakfast." And his back was still clearly up and he still clearly didn't want to do the surgery. And I said, "I don't need a doctor anymore - I need a surgeon - and you look like the one. The kryptonite fell out of my asshole - so if you see it don't trip on it."
Then I asked him for pain meds and he said, "I can do that." And he opened my chart and saw that I had written him a note. He said, "What's this?" "A present for you. Last time I had to give you one AFTER THE FACT - but this time it is before."
I could tell he was both surprised and annoyed by it. But he put it down on the table. And then I was left to the Anesthesiologist asking me questions. And we were getting ready for the OR...
What was in the note you ask? A few reasons WHY you might do visualizations. It was a personal note to my doctor. A very personal one. But it told him how I feel about him - and how I believed in him. And how and why visualizations work. And how neither he nor I were being good to each other to scare each other before a surgery and HOW he could do visualizations with me that would work without lying.
I wasn't sure if he would read it. But you know what. He did. And I know he did- b/c before they put me under he came to my head on the OR table and said, "I will take care of you. I will keep you safe...." He did! He DID! I smiled! I felt a rush of safety wash over me. I was not here alone anymore - someone else was showing up for me. This mattered more than I can say.
The anesthesiologist assist put a mask on me but it didn't fit over my face so we all stood around for a bit waiting and I started giggling b/c I was just lying there too... so I picked up my arm which they had arranged on the tale and said, "Well this would work if you actually fitted the mask on my face" and I put the mask more securely on my face. And the anesthesiologist said, "Take deep breaths" and I laughed and smiled and felt safe and off I went.
And when I woke up I had some pain... and I said, "Pain" and a nurse came over and said, "I gave you something for it- it will kick in" and I said, "Pain" and my surgeon came over and said, "You will have pain" and I said, "This is ENTIRELY UNNECESSARY - ENTIRELY UNNECESSARY." And I dropped the f*bomb. *snicker*
I HATE PAIN. I'm not a fan of it. I was huffy. Also I had just woken up. I also realized after the fact that the doc was there. I'm not used to doctors being there when I wake up. I've never seen one do that. So they wheeled me down to the wake up room to Nurse Claire and she sat with me and gave me fentanyl and got me some oxy so I could have some lasting meds so I could dress and go home.
And lo and behold Doc M had ordered the wrong dose of meds for me. And Nurse Claire said, "Oh no - this isn't the dose that you take Melissa - I can help you for today by getting more oxy from the next room if you can hang on - and I'll give you a few more doses of fentanyl while you need it - but I'm going to have to call your surgeon down to re-write the script, you'll blow your liver out trying to take 20 milligrams of this."
I said- "Fine - get him down here." And he came. Just like that. And I said, "I take 20 miligrams doc.. I promise not to be a street whore with it - but I can't do it with the prescription you gave me. And he said, "No problem." And he ripped up his old one and wrote a new one out. And handed it to my dad. And I smiled at him.
I wanted to say more and I think he did too... but I flashed him my hand that said, GO BIG OR GO HOME on it. He nodded. He'd seen it before.
He left.
I went to get dressed.
Nurse clare is the sister in law of the other surgeon. I told her it was such a shitty experience over at Crawford Long and how NOTHING over there went right. I told her that my surgeon over there was the only decent experience... she was fabulous and took care of me and scrounged some oxy up from mid air... and we hugged and she wheeled me to my car - and I've only really needed a full day to rest and recover...
And you know... "use common sense" and 2 weeks to "FULLY RECOVER" from it.
I'm grateful. I feel like life is better now- like the horrific experience from that last surgery is gone. And I feel like Doc M is somehow - on a new plane - he grew - or he forced himself to do something for his patient. Either way- it mattered to me. It truly did.
xx
M
She's been a nurse for over 30 years... she's a no nonsense Georgia black woman - but took an instant liking to me. She was like - "you can't butter me up." And I said, "Nurse Wanda, I'm so terrified, I've already buttered you up- you've signed my iv line - you can't fool me."
And she said, "You can't fool me either Melissa - I know you're scared- you act just as silly and outgoing as me when I'm nervous as hell.' And we laughed and carried on. She went and got little kids stickers and a tiara one and tapped my head with it. And then Told me, "You look like you been rode hard and hug up wet too many times my friend-- these are to reward you. And handed me a HANDFUL of princess stickers.
By then we were both in hysterics. We just were.
It was SUCH a funny morning. So OPPOSITE of being left alone in a tent to worry and fret before my gb/sm intestine surgery. And then - when the Anesthesiologist came for me - she walked me to the elevator and got my dad and Nina and showed them were to meet me when I was post-surgery -- so they could talk to my surgeon.
And the Anesthesiologist and I were going to converse but first my surgeon came over... Doc M. And he was still snarky from my little last minute huffy note. And he said, "You know all the risks?" And I said, "Yep- ate that fear for breakfast." And his back was still clearly up and he still clearly didn't want to do the surgery. And I said, "I don't need a doctor anymore - I need a surgeon - and you look like the one. The kryptonite fell out of my asshole - so if you see it don't trip on it."
Then I asked him for pain meds and he said, "I can do that." And he opened my chart and saw that I had written him a note. He said, "What's this?" "A present for you. Last time I had to give you one AFTER THE FACT - but this time it is before."
I could tell he was both surprised and annoyed by it. But he put it down on the table. And then I was left to the Anesthesiologist asking me questions. And we were getting ready for the OR...
What was in the note you ask? A few reasons WHY you might do visualizations. It was a personal note to my doctor. A very personal one. But it told him how I feel about him - and how I believed in him. And how and why visualizations work. And how neither he nor I were being good to each other to scare each other before a surgery and HOW he could do visualizations with me that would work without lying.
I wasn't sure if he would read it. But you know what. He did. And I know he did- b/c before they put me under he came to my head on the OR table and said, "I will take care of you. I will keep you safe...." He did! He DID! I smiled! I felt a rush of safety wash over me. I was not here alone anymore - someone else was showing up for me. This mattered more than I can say.
The anesthesiologist assist put a mask on me but it didn't fit over my face so we all stood around for a bit waiting and I started giggling b/c I was just lying there too... so I picked up my arm which they had arranged on the tale and said, "Well this would work if you actually fitted the mask on my face" and I put the mask more securely on my face. And the anesthesiologist said, "Take deep breaths" and I laughed and smiled and felt safe and off I went.
And when I woke up I had some pain... and I said, "Pain" and a nurse came over and said, "I gave you something for it- it will kick in" and I said, "Pain" and my surgeon came over and said, "You will have pain" and I said, "This is ENTIRELY UNNECESSARY - ENTIRELY UNNECESSARY." And I dropped the f*bomb. *snicker*
I HATE PAIN. I'm not a fan of it. I was huffy. Also I had just woken up. I also realized after the fact that the doc was there. I'm not used to doctors being there when I wake up. I've never seen one do that. So they wheeled me down to the wake up room to Nurse Claire and she sat with me and gave me fentanyl and got me some oxy so I could have some lasting meds so I could dress and go home.
And lo and behold Doc M had ordered the wrong dose of meds for me. And Nurse Claire said, "Oh no - this isn't the dose that you take Melissa - I can help you for today by getting more oxy from the next room if you can hang on - and I'll give you a few more doses of fentanyl while you need it - but I'm going to have to call your surgeon down to re-write the script, you'll blow your liver out trying to take 20 milligrams of this."
I said- "Fine - get him down here." And he came. Just like that. And I said, "I take 20 miligrams doc.. I promise not to be a street whore with it - but I can't do it with the prescription you gave me. And he said, "No problem." And he ripped up his old one and wrote a new one out. And handed it to my dad. And I smiled at him.
I wanted to say more and I think he did too... but I flashed him my hand that said, GO BIG OR GO HOME on it. He nodded. He'd seen it before.
He left.
I went to get dressed.
Nurse clare is the sister in law of the other surgeon. I told her it was such a shitty experience over at Crawford Long and how NOTHING over there went right. I told her that my surgeon over there was the only decent experience... she was fabulous and took care of me and scrounged some oxy up from mid air... and we hugged and she wheeled me to my car - and I've only really needed a full day to rest and recover...
And you know... "use common sense" and 2 weeks to "FULLY RECOVER" from it.
I'm grateful. I feel like life is better now- like the horrific experience from that last surgery is gone. And I feel like Doc M is somehow - on a new plane - he grew - or he forced himself to do something for his patient. Either way- it mattered to me. It truly did.
xx
M
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