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”
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 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.
I had a feeling about this one. After all, it only makes sense when you do the math. Having gone through my first week of EECP treatments, I could not help but notice an immediate effect of more energy than I’ve had in some time. It’s wonderful. It’s similar to the feeling I remember from back when I used to regularly work out a long time ago. They call it runner’s high, and it is accompanied by a bit of tired soreness of the muscles involved, that being the thighs and gluteus maximus. It’s the result of forced and increased flow in the circulatory system, and for the moment I should approach it with caution. These treatments take seven or so weeks to reach the maximum benefit, so it’s a lot to ask of them out of the gate. But it’s a little bit euphoric, in truth, for the moment- and, as it turns out, potentially dangerous. Luckily I had already figured it out to a large extent. So I must approach increases in activity in small increments. There’s plenty of time for more later. As in life itself, it is a day-to-day affair. As the nurse/technicians cautioned, the fastest way to land in the hospital is to exert yourself as much as you feel you are able to at the onset of this treatment regimen and course. Baby steps to a new life. I’ll take them in stride.
It’s hard to believe that at one time, atmospheric testing of nuclear weapons was considered the hottest thing going. It was sexy. Sure it was. French couture designers named the then scandalously skimpy bikini bathing suit after the South Pacific island that this government made uninhabitable for the known future at an astounding cost. Unimaginable. I suppose one had to be there at the time to understand how all THAT came to be.
In the world of cardiology, it would seem the CT surgeons got all the sex appeal. They literally hold your life in their hands making repairs to a non-beating heart which they start up again when they deem the right time, thus giving you back your existence, if it all goes right. Some people consider them gods. This, too, is done at enormous expense against questionable reward in some cases. Let’s face it- in this culture attrition is sexy stuff. And power on that level has a strong attraction attached to it.
I just got started on an alternate therapy for coronary artery blockage with the anagram of EECP that seems to have missed out on sex appeal. I can’t understand why, not for the life of me. Maybe it was poor marketing. In any case there are a lot of folks missing out:
1. There is something about being restrained about the hips and legs in hook and loop Velcro cuffs that a fair amount of people would find at least a bit arousing. Just look at how many “vanillas” bought and read “50 Shades of Grey“. Sexy stuff.
2. Having one’s hips thrust forward with each diastolic cycle of the heart beat continuously for an hour every day while lying on a bed has got to remind even the most unimaginative person with even the most jaded of libidos of something carnal in nature. A full hour of it pretty much non-stop is damned impressive as well. I don’t care who you think you are.
3. On occasion the monitor/machine that does all this picks up an anomaly or heartbeat rhythm it does not recognize. When that happens, it momentarily stops, takes a breather and restarts with a certain amount of gusto! Is any of this sounding familiar?
4. After about ten minutes, a very pleasant warm feeling is concentrated in the thighs and… er… loins. Hot stuff.
There’s enough here to put into any given cheap and racy paperback sexy pulp fiction novel offered on any given drug store shelf. The word “undulating” comes to mind in that context. It sure does.
I ran across a current study that once again indicates that depression is a factor in congestive heart failure. It claimed fantastic numbers regarding the odds against recovery of the condition when depression is heaped upon the sufferer. The numbers were not good at all. This only makes sense given depression is a contributing factor in heart disease. It’s a nasty one-two punch. Both conditions are also sneaky destroyers, hard to detect and easily attributed to other things in life, all while tearing it down bit by bit. I myself have danced on the edge of clinical depression more than once, and can identify it pretty well. Thrown a full-blown case of congestive heart failure into the mix and the potential for disaster looms large and very, very real.
The proposal in my case to make a direct repair with a triple bypass surgery plays directly into this, as does my reluctance to proceed with it at this point. It is well documented that, for most patients, heavy depression follows the procedure. This is not only due to the recovery process. That can be remedied with therapy. It can be from the nature of the procedure itself. While a heart/lung machine used during the operation keeps blood and oxygen flowing while the heart is out of commission thus keeping the body alive, it is not without consequence. It seems that in many cases, the constant flow (as opposed to the natural on-off beating of the heart) brings about changes in the brain itself: “fuzzy” thinking, memory loss, and depression, to name the big ones. Given my knowledge of my own personal landscape, this fact makes me pause.
Again, the logic escapes me on many levels. Again, it all seems to be going in circles.
There are no magic pills, miracle cures or silver bullets. I don’t believe in them. There are facts. Stacks of facts and data and studies. Invariably, they are open to interpretation by the readers and authors of them. So, where do the elements of faith and trust fit into all of this searching I’ve been doing? There is good evidence that, on the surface of it, these elements can have curative impact on terminal illnesses. The academia pushing the paperwork tends to refer to this as phenomena, specifically as placebo effect. I’ve seen that one crop up many times in researching treatment for heart conditions. Placebo effect is mentioned as a possibility in trials and studies done without control groups, even. The more I read these papers, the more it crops up as something of a back-up weapon, a device to put doubt on otherwise positive results. It is oft said, “You can’t argue with results”. Well, that is a yes and no proposition in the medical world. They seem to do this all the time, and it interests me what the motivation is. On one hand, certain technologies and therapies are deemed being this side of miraculous, life-saving even, based on results. Others with equal relative results are relegated to the fringes of alternative treatment and voodoo rituals. I, for one, don’t quite get it. There is no such thing as blind faith for me in these matters.
Miracles? For sale? Don’t think so. Not by way of any procedure or drug, anyway. On the other hand, my spirit has seen and felt things that could be deemed miraculous. I have three rolled into one, myself. I consider my daughter. She was born 10 weeks early and got through that. She pulled through after a pretty serious attempt at suicide. She reversed a 10 year struggle with eating disorders. It could be said that it is a miracle that she is here at all. I’ll buy that.