The following was posted to Facebook this morning by my wonderful and courageous daughter:
“So as usual I filmed a rough version of myself doing the number for tonight as a reference and to make sure key stuff looks good.
Maybe it’s that part of my wisdom is gone with the 4 teeth pulled or something, but in analyzing my proportions, I realized what I am now is less than what I thought I was at damn near 90 pounds, and still wasn’t happy.
In hindsight, I lost too much time to a disease that is too shamed upon and not fully recognized by society, yet all too common and strikes all genders, races, and ages. Back then I couldn’t see that I looked sick and terrible. I don’t even know how my now hubby saw anything in me when we met…appearance is nothing when it comes down to the physical wreck one puts their body through when faced with any type of eating disorder.
I look back on those years and think how I could have done better. Mistakes that would not have been made if I wasn’t consumed with said disease. But hitting rock bottom and powering through to a life not consumed by self destructive thoughts 24/7 has made me the strong woman I am today. A roll with the punches, fight for what I believe in, follow my dreams and screw the haters kinda gal. Without that struggle, I would not have the awesome things in my life right now that at my low times I tend to forget. Honestly, as my bandmates say, I have more than 9 lives because I’ve used up 20 at this point.
For those that stuck through this status, thank you. For those that are struggling with an eating/body image based disease or issue, I am a message away. Every now and then I go all preacher masokiss here on FB because I know someone, if only it be one single person, will read it and maybe get a tiny spark inside of them to fight to become healthy. It only takes one instance to go from feeling invincible to being damn near a death bed. Life is more than how you look, or how you THINK you look.
Live for the moment. Live for yourself. Fuck that negative voice in your head. Give a middle finger (or two) to the haters. #staystrong”
I am reminded of a comic strip I saw in the daily paper, where a dog chasing his tail finally caught it. The cartoon dog made a great exclamation of delight as a result. The following cell pictured him in exactly the same place, tail still in mouth, the Sun having gone down and the Moon high in the dark night sky. The “thought” bubble over his head said “NOW what do I do?”.
For more than a moment, I could relate to that after reading the highly anticipated correspondence from the bureaucrats regarding an SSI claim. Then again, I had a funny feeling about how it would turn out. The claim was made at the encouragement and suggestion of the medical insurance company through the Department of Public Welfare. They provided an advocate to expedite the process, in fact. The claim was put in just prior to the triple bypass procedure that ultimately and wisely I decided against.
By way of cross-indexing all all of my medical records against their criteria, it was determined that I was fully able to return to the work I had done most of my adult life. They were very clear about this as fact, further saying that my condition had improved to the point that I should be able to re-enter the work force at this age and continue where I left off as if nothing had happened.
What may be the classic irony and circular logic is this fact:
Had I undergone the bypass surgery, the probability of becoming qualified as disabled up to the normal SSA age of retirement claim would have been upward from 80% positive.
I am confident that this is a fact. Everyone I have spoken to that is familiar with the system backs this up. In my dealings with every involved agency over the past few years, I am not the least bit surprised. I’ll be most happy to be rid of it all finally and hopefully. If I can find a job at this point, that is.
One of my first jobs was cleaning a restaurant. That has to be the very definition of a thankless pursuit. That much I did learn, but I did take pride in it and always wanted to please the owner, and be noticed. There was a guy there that showed me the ropes and taught me things I could use to advance myself within the enterprise. His name was Louie. He was a big, barrel chested Italian fellow with red hair. He was a catch-all kind of guy for the owner. He could do just about anything that needed doing. One time he was mowing the lawn and tried to start the mower on straight gasoline. The owner figured out the problem of why it wouldn’t start and told him he needed to mix oil with the gas before putting it into the tank. Louie added the oil to the tank, hoisted the entire mower and shook it in the air, owner shaking his head and laughing. It was like that.
Louie carefully showed me how to make coffee in the giant urns one morning. I took a cup of the fresh brew out to Frank the owner while he was sitting in the main bar, going through receipts that morning, looking over his half-rim glasses. Frank was pleased.
The very next morning I had just finished cleaning when Frank arrived. He asked for a cup of coffee. I went and made a full urn of it- exactly the way Louie showed me and served it to Frank, awaiting a positive response. Frank took a sip, spit it out all over the place, and accused me of trying to kill him. Louie came rushing in to see what the problem was. As it turned out, he neglected to tell me to empty the caustic lye urn cleaner that was cooking away overnight and rinse it twice before making an urn up. He rightfully took the hit for me on that one. I went and got the mop and bucket and re-cleaned the floor in the bar.
I’d see them nearly every day at the same time, waiting for my bus on Cottman Avenue, post treatment. The old man and his dog, walking down the sidewalk. They made a nice pair. Both of them were slim and long. The dog was kept on a very short leash by the man with the close trimmed pure white beard hunched over and talking to the dog the whole way. The dog, on passing me, would desperately try and make eye contact with me. I could tell how friendly this beautiful dog was, but turned away. I realized that the man was training his new companion, and I was not going to disrupt their bonding, even though I really wanted to meet this fine creature on some level. After about three weeks, the man stopped for a moment where I was standing, waiting. I extended my hand to the dog, who gratefully licked my palm.
“Greyhound?” I asked.
“Yes” He replied.
“She’s a beauty. Rescue?” I asked further.
“Yes” He told me.
I thanked him for the brief encounter, and they continued on their way down the Avenue. Watching them move along their way, I came to the realization that they rescued each other.
It’s best not to categorically expect the very worst. It is fair to say that there is wisdom in being prepared for the worst. Delightful surprises can ensue.
About a month ago I interviewed a new cardiologist. He seemed to have very good communication skills and a genuine interest in my case and story. He was referred by the EECP treatment center I was going to and attached to the same hospital cardiology group. I thought I might have a shot with this guy. He requested films of all my prior tests since I was hospitalized two years ago for congestive heart failure and offered to review them with me on my next visit in a month. This was something new. It was encouraging. Never heard this before from any of my care-givers. He picked up the fact that I was an active participant in my own healing. An extremely active one. Proactive, even. It was only on the way out the door that I realized that he was a intervention cardiologist. It was right there on the appointment card.
Through all my dealings with these guys, I’ve learned to be suspect of them. Especially intervention doctors. They tend to be Hell bent on doing angioplasties and implanting stents and such. Of course they are. That is what they are trained to do. I imagined myself having to fight with him to avoid some kind of procedure that I really knew I did not particularly need, and prepared many mental dialogues, come-backs and logical conclusions. Adamant alternative treatment people like myself are poison to most of these doctors.
So, I got the films, brought them along with my collection of PDF files of every report and written record from the last two years on a separate disc ( my history, as they call it). The nurse/practitioner I’ve spent some time with adjusting and reducing my medications over the last few weeks was duly impressed. As it turned out, there was a problem with the office computer system, so I left the films on loan until they could upload them to the hospital network. In the following conference, my new guy agreed that what we really needed was a radioisotope scan to see what was going on since the EECP treatment, adding that in all probability, nothing more need be done. It appears he gets it.
It also appears that I have made the right decision about my care for the second time in a row. Looks like I found an advocate outside of myself- in the most unlikely of places.
It’s not really worth expending energy on anger or rage. I’ve wisely learned that those things rain havoc on my physical being. I’ve decided on this approach instead. I may be annoyed, but it is healthier in my case.
Yesterday I decided to review test results from my initial hospitalization in light of my decision to NOT have bypass surgery and go instead with EECP treatments to spur the development of the collateral vessels around the blockages in the main arteries that feed my heart. I’ve been saying all along that I believed there is evidence that the process was already happening judging by scans done earlier this year and improved overall health of the heart. I do not pretend to be an expert in medicine or cardiology. I can, however read. I can see. I can do comparative analysis, and have very good attention to detail. Maybe even better than that of those expert and trusted with my care. It’s no news that I bear distrust toward these professionals. Here is what they saw and did not talk about with me, and it has been hiding in plain sight in black and white on my cardiac catheterization report since June 10, 2011:
LCX: This vessel is 100% occluded proximally. There is a long OM which fills retrogradely from collaterals.
RCA: This vessel is 100% occluded proximally and fills retrogradely via collaterals from the LAD septal branches.
Those two above, in plain English, indicate what is termed “natural bypass”. Or at least the strong beginnings of the process.
To add what I quietly call interest to all this, prior to my last cardiac catheterization in February of this year, the intervention cardiologist performing it introduced himself and looking over the prior report stated that we were going in to check my current status and implant a stent. I presume this was intended for the partially blocked LAD. The team nurse quickly questioned why he would do that, as the cardiologist who ordered the procedure did so in preparation for triple bypass. It is all becoming painfully clear to me now. I am doing the right thing staying away from that crew. Above lies my proof.
quod erat demonstrandum
It has been a while since I have even thought about this thing I consider a scourge on the the current state of health care, let alone comment on it or raise my voice about it. It came to mind today in a roundabout manner in the course of my EECP treatments. I am about a third of the way through to date. My vitals are taken daily before and after each session, and for the last week my blood pressure has been trending downward. Ordinarily, this would be a good thing, however, the trend is dipping low enough to be of concern. In particular, the systolic number is at an all time low for me. My attendants even had each other check it to be certain. This phenomenon can be brought on by any number of reasons, not the least of which being the treatment itself improving the function of my heart. I am convinced that at this point my medications are over-dosed. Two of the blood pressure lowering drugs were doubled by my cardiologist at the beginning of this year in anticipation of an open heart surgery procedure to bypass several main cardiac arteries. Since I decided to not go that route and do the EECP treatment it is only logical that the dosages should return to where they were. I explained this to the nurses, adding that I was aware that no one at the center is in a position to advise on prescriptions. I also added that ordinarily these things are determined by my cardiologist, but I was considering changing him for someone more attuned to the approach I am taking. In so many words, I was honestly informed that I will not find any such cardiologist, not even the hospital group attached to the EECP center. The reason being that there is no big money attached to this method. As if I didn’t already know this. People have to demand this therapy. If they even are aware of it. The bill-for-service machine driving US heath care isn’t going anywhere any time soon. I’ll just stick with the guy who knows my history the best for now and hope he can deal with me.