I am feeling a roller coaster of feelings, right now: Relief, irritation, frustration, love, joy, regret, blah…. Last week my cardiologist drew 9 vials of blood to see if we can get to the bottom of my blood clots prior to repairing my shunt. There have been some things consistently out of whack, so he wanted sort that out before he does my procedure on November 1st. He called me with the test results yesterday morning. Two things concerned him. One is the anticardiolipin antibody IGM, which has been in the moderate range all three times. The other is Factor V Lieden. Both things cause blood clots. The IGM also attacks the blood vessels, cell walls and heart valves, which could be causing my hemolytic anemia, hemolysis and the three funky heart valves… So he’s now sending me to a hematologist to get me on the right medications before my procedure. The major concern is that r-l shunt is allowing blue blood, clots and bacteria to skip the filtration of the lungs and go to the brain and organs…and both of these blood abnormalities cause clots, so combined with the hole, it’s an unlucky combination. He told me before that he believed that my intractable migraines are actually TIA’s (transient ischemic attacks – mini strokes) and now this could also explain strokes, neurological problems, white patch on my brain MRI,... He has to get this under control before he can operate.
I am relieved that somebody is finally doing something to help me, but I’m pissed that it has taken 39 years for that to happen. I don’t want to be pissed, because it is not good for my mental or physical health, it blocks my qi, and it doesn’t change anything anyway, so I guess I’m compensating with the blahs that break up moments of watery eyes and grumpiness. I really really felt irritable and withdrawn today, and I am fighting against frustration that doctors can be so ambivalent. How many people slip though the gaping cracks in this supposedly superior medical community?
I don’t understand why doctors bother to run blood tests if when they come back abnormal they do nothing about it. I have never had a normal CBC, and the IGM has been there every darned time they checked. You’d think the hoards of blood clots, repeated thromboplebitis, massive vascular damage,.... would raise a red flag or two. This only lightly scratches the surface of my misadventure, but I’ve said enough to paint a vague-ish picture of my medical fiasco so you can understand me better, and understand what motivates me in my current creative shift and what motivates what I will have said by the end of this.
Going through it all has been hell and has really taken a toll on my body, psyche and relationships, especially the last few years. I have missed out on the basic normal stuff that everybody takes for granted and have been in the hospital literally hundreds of times in the last few years, including at least two birthdays. I have withdrawn from people and if you’ve had the pleasure of doing something with me in the last 5 years, you should count yourself as a minority. I owe an apology to my friends. I was not rejecting you when I did not take you up on your wonderful invites. It really means so much to me that you thought of me. I know now that it would have been easier to bear this weight with the help of my friends and the fun distractions we could have enjoyed. I have not wanted to be a burden on anyone and was afraid that I would get sick and spoil everyone’s fun. I thought that I needed to be a happy, cheery, rock of a person who everybody could lean on, but I was very uncomfortable leaning on anyone else.
Everybody has many struggles in their lives, but most people hide them. I think people are afraid to come across as vulnerable. We want to portray ourselves as having the lives everyone else wants, because we incorrectly regard “perfection” as strength. This does nothing but lower our quality of life. If we can’t share our pain with other people, then not only do we miss out on the nourishing support from our loved ones, but our relationships remain superficial. We never actually experience true intimacy, and I’m not referring only to romantic intimacy, but to the many deep connections that are possible in life.
People don’t like you because you are smart, talented, rich, attractive, perfect…in fact, I think many people resent folks who seem to have it all. Anyone who likes you for those reasons is only using you. They see you as someone who can do something for them or somehow elevate their status. People really like you for how you treat them and how they feel when they are around you. Unfortunately, some folks are uncomfortable hearing the gritty, intimate, darker details about other’s lives. But I am not, and I refuse to portray myself as a shiny, polished person with no problems. I have problems. I might sparkle sometimes, but that is pure perspiration. If someone can’t handle the dirty truths about my perfectly imperfect life, then they can find their kicks elsewhere. I am not afraid to be ridiculed…and I have been, even publicly by people that I loved. It hurt immensely, but I survived and can look back and know that my problems were not the problem.
I promise to everyone right now that I will do my very best to be myself, the good, the bad and the ugly; and I will do my best to forgive those who can’t accept that. I will also strive to provide my half of true deep, honest, encouraging and supportive friendship to those who are willing to grow and learn with me and love me for who I am. Our struggles are part of living and I want to live fully. Let’s embrace the wholeness now, of what it is to be alive, and do our best to help make life better for everyone, because that gives us purpose and joy. Sometimes we are the rock and sometimes we are the soft, fuzzy stuff growing on the rock.
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