I almost died!
They sent me home to die.
But now I'm alive! And better than in years! And getting better all the time.
It's been a long time since I posted. In order to catch the blog up properly I would need to write a book, literally. So I'm going to skip that, and even skip the reader's digest version, and just go right to a single post that summarizes some things, to get my blog up to date.
Then, from now on, we'll see how my current plans work out!
1. Lipedema (sigh). Visions, voices, dreams, and yet-more of years of pubmed and web reading to try and figure this out, have brought me to a couple of realizations I have not yet had time to implement, but will. For those in that boat with me I'll share a summary. Might be worth what you're paying for it but hey, nobody else has a cure, so...
Some agriculturalists say we "broke the sulfur cycle" in the 1940s in our nation and that people have been chronically deficient in this mineral since. Sulfur is in every cell and is what makes the membrane properly permeable and flexible. Without sufficient sulfur, the body has to allot what little it's got, and some cells will have to have rigid exteriors which do not allow oxygen respiration and waste disposal which will lead to bloated, toxic, unusable cells. Which also may have trouble being broken down properly as well. It's only theory but it would make sense the body would do this to fat cells since they are the cells most disposable in the body, and since they can easily be redistributed away from the vital organs. As rigid membranes would mean some cracks and leaks, chronic inflammation, pain, and so on in the areas where the body is storing those en masse makes sense.
My body had suggested sulfur. At the same time (same night) it suggested quercetin. It turns out the membrane surface of cells needs to be conductive so that energy can pass between them (not just on nerve pathways but cell to cell). I looked in pubmed and this is what quercetin does. I believe an ongoing supplement of a quality MSM and quality quercetin will not harm me, and eventually may help. Who knows? I'm just sharing what I've gotten.
2. I had an ongoing period where I took a great deal of the supplement serrapeptase, with a little bit of nattokinase as well, before bed. I did this in the hopes that it might have some effect on too much fibrous growth in the lipedemic areas (hips-thighs for example). After a little while, my eyesight improved notably. Turns out that's one of the things it's used for.
I'd had a significant health issue: I'd had whooping cough, and though it finally (took forever!) went past, my lungs never fully healed. Even the teens around me who had it, their hadn't either, we were having a talk about it over a year after we'd all gotten it. Although my lungs had partly healed, never fully and I could not sing as a result -- air control issues. Some time after the eyesight bit, I started coughing, for no apparent reason -- not sick -- but it genuinely felt like I was coughing up crap from the very bottom of my lungs. After about ten days of doing exactly that, my breathing was better, and I eventually realized I could sing again. I looked in pubmed and it turns out both of these things -- eyesight and lung healing -- have successful research on them with serrapeptase.
Meanwhile my friend's sister began taking it and after some months was able to reduce and finally ditch the cane she'd had to use for six years, for her knees. There are lots of stories like this it turns out. Worth looking into.
Co-Q10 (and other supps)
3. For reasons I'll mention below, I began taking the supplement Co-Q10, a few hundred milligrams a couple times a day. I was in a situation where I had cause to know: this supp really, really helps if there's a heart issue. The difference in energy and recovery of my heart, specifically, was very notable based on when I'd taken it vs. forgotten to take it (I suck at being consistent with supplements).
There are only few supplements that I have found in my life where I really NOTICED a difference -- most we just hope they're helping. Those were:
* Vitamin D3 in a fairly high dose. The first time I took about 10K of D3, about eight hours later I had what I can only call a significant improvement in my "fundamental sense of well-being."
* A very hefty dose of lecithin and ascorbic daily (I was doing microencapsulated ascorbic, sometimes called homemade liposomal vitamin C though it's different. Note the sunflower lecithin is drastically higher in this, than in commercial versions of lipo-C, and I believe that's where much of the difference came in, it wasn't just the C). I spent ten days feeling like my whole spine had an "under construction" sign on it -- it felt a lot like overtraining deadlifts can -- it got less with each day until gone. I believed, intuitively, that the phospholipids were being used to rebuild the nerve sheaths around the spinal column. I had a vast amount more social patience, less traffic-driving stress, and so on.
* Serrapeptase, see above.
* Magnesium when rubbed all over my torso and legs, waited about 15-20m then took a shower and went to bed. I had signficantly more energy the next day every time I've done this.
* Co-Q10, see above.
So several years ago my energy utterly tanked. After ketogenic dieting had done awesomely for me, suddenly I couldn't survive on it. The overall effect got worse over time.
I went through such extreme energy problems that for example, if I did the herculean effort to go grocery shopping even for a few things, I might sit on the couch, watching them go bad in a bag on the floor, because I hadn't the energy to get them to the fridge and freezer and hadn't the energy to get up. I could sit for hours trying to come up with the energy to take off my jacket. I had to "psyche myself up" for an hour to be able to get up to go to the bathroom. It's one of those things that in retrospect was so extreme I can't believe I wasn't in ER or something, but what would you complain about? I had no medical coverage then. (Note: that was my fault. I simply had not chosen to pay for it. Had I been truly poor, the government would have given it to me.)
I spent a long time collecting "obscure supplements," sure that it must be something missing in me. Then I took them, once they were collected. This was aversion-training for taking pills. At the end of many months, it had helped enough that now my energy was merely about zero, as opposed to in the negative.
I kept growing, physically, particularly in the lipedemic areas. By October 2013 I shouldn't have been driving. By February 2014 I couldn't anymore because I literally could not fit.
Aside from the disaster of my size, and an energy problem so severe I could barely make it from the car to the door, I started reading and realized that I was probably insufficient in every nutrient, due to long-term low-grade anorexia. "Anorexics in fat suits" is a common term for lipedemics -- something about it seems to kill appetite, which is all anorexia means (the "nervosa" term added, is something else). Even without that, large people often undereat nutrients, overeating energy-foods, and so are often a bit malnourished anyway. I figured the two combined might be very serious, and might explain the problem. I determined to go on a sort of anorexia recovery program which would require me to eating very regularly and robustly.
My body had been growing. And my heart was getting more tired. I would stand up to go to the bathroom and already any energy was gone. Merely getting to the bathroom and back, never mind shower, took the kind of effort most people only use for extreme versions of rock climbing. And it took me 20 minutes sitting in my bed to recoup. Thankfully I work remotely on a laptop!
I got more sedentary until I was literally bedridden. I kept growing, physically, despite not eating much, because at that point nearly everything I ate seemed to cause 'reaction' (similar to a gluten inflammation reaction). I knew my heart was pressed but this was said to be normal for someone with lipedema -- when it's extreme -- and I had reached menopause, which is a hormonal event and those are known to cause big issues with lipedema and growth as well. It seemed like a cycle of degeneration that there was nothing I could do to change. I determined to get medical insurance so maybe I could at least get some help with the seeming heart stuff, but it would have to wait quite awhile as my company only does this once a year.
In October 2015 I had a significant heart attack. I wasn't treated for it. I wasn't sure until a few weeks later that's what it had been, and at that point I was already past the worst of it. Let me just summarize and say that this and the 2 week aftermath fall into the category of things I never, ever want to experience again for any reason.
Starting Jan 2nd 2016, I worked frantically, now that I had health coverage, to get to see a doctor. Nobody could see me without a primary care physican. Nobody would become my PCP without my visiting their office. I was literally immobilized -- aside from barely making it to the bathroom and that with ropes I had anchored to cling to all over -- I could not stand, walk, etc. All the doctors said even if I went to ER and they were standing right next to me they would not be able to become my PCP, it required a visit "in their office" for insurance reasons. It was insane.
In February 2016 the edema that had been growing from my lower body upward basically reached my lungs. I was literally drowning from the inside. And at one point, I could no longer make it to the bathroom on my own. I got there and knew it was the last time. I called the paramedics, and I went to ER. In the ER I told them of my Oct experience and how it had gotten worse ever since, and how I didn't have a doctor and why. They said they had to refuse me treatment because their charter is only for "acute" issues which means "new" the last few days. I said, I AM DYING. I will not survive another couple days. They said yeah, we see. The doctor talked to me until, in my brain-befuddled state, I realized that if I did not personally volunteer something that made it a RECENT (within 3 days) event, they could not help me. I said, "I've been having chest pains!" and that was it -- they checked me in.
I was hospitalized for 8 days, during which they ran a gazillion tests and had me on strong IV diuretics (thank goodness). My weight according to their space-age bed was about 455. A strange thing kept happening. A doctor would see my specs from the tests. He would come in to talk to me about the fact that I was gonna die any minute. And he would see that I was totally alert and functional and react very oddly -- I mean it was obvious (one doc literally his eyes got huge, his mouth dropped open, he stepped back, and then excused himself and nearly ran from the room to do something different than planned on my account). They were attempting to get me this surgery for the heart, it is not open heart surgery which I didn't think I would survive nor did they. One of the big things in OHS is that you have to be mobile immediately after, you must, the stats on failure are huge for those who aren't. But I wasn't mobile even before the surgery. They would apply for me, three different docs trying to help, and the answer was always no. I didn't fit the stats.
They sent me home on hospice to die. I had about six months they estimated. That turned out to be a pretty good estimate. But for the sake of "quality of life" they kept me on (oral) diuretics. Which really, really helped. Because I worked hard -- not 'too' hard -- on losing some fluid and getting more mobility. I thought maybe if I did that, I could qualify for surgery and not die.
But I had what I was pretty sure were a couple more small heart attacks, not long after a little exercise and food. It was clear that I was unlikely to survive to the point of being as mobile as I needed to be. Finally I begged my hospice nurse to help me talk the doc into finding me a surgeon -- maybe some wild cowboy lunatic with 99% chance of killing me but I was willing to kill myself at that point, I was so physically miserable, in pain, in despair, with no hope for the future. I figured if I died during or after surgery, well, at least I wouldn't have to live like that anymore.
They found someone willing to look at me -- they didn't actually get a surgery agreement, but I didn't know that! -- and then because of my size, they put me on a high gurney and shipped me six hours away to St. Louis. I am pretty sure that a perfectly healthy person on an elevated gurney for six hours of bad highway would be seriously sore after. I literally woke up wailing and unable to move a muscle in my torso/shoulders voluntarily and had to be medicated for pain every morning for three days.
On the other hand, during these days and another two, they were doing tests on me, all the same tests as before, and then some -- detailed lung tests, and a CATH test of the heart.
And when all that was done they said: most people have clogging of the arteries. You don't. Most people have build-up in the heart valve that requires bypass. You don't. Blood pressure: normal. Blood insulin: normal. Insert a long list of other stuff here -- all normal. The only thing they could track was that I had a significant heart murmur, which I was born with, and that I had a profoundly degraded heart valve -- which I was born with.
So apparently, super-sized women age 50 in the cardiac ward, are not commonly healthy by every measure except-that-heart-valve-thing. And the lipedemic fat, but that wasn't going anywhere and it wasn't in my torso so aside from stats on paper didn't seem to affect any numbers much. Seriously they were a little bit amazed. I said well, I ate really well for about ten years! Maybe that helped.
They said based on the heart valve, I hadn't been getting up to 70% of the oxygen and nutrients to my brain or body, in a rising gradient %, for many years. So my suspicions about anorexia were right -- but it was vastly more profound than I dreamed, and due as much to blood issues as what I ate or didn't. And they said if I had open heart surgery, assuming there were no problems during or complications after, that this would actually solve that problem.
OPEN HEART SURGERY
So I had open heart surgery on July 1, 2016. It took half the normal time. Everything on recovery happened a day early. Went great. But let's add this to the box of "things and their aftermaths" that I never want to experience again in my life.
They stuff you with fluids during and I came out of it larger than I went in, as incredible as that seems. Their theories (the docs) was that after a few months I would probably be losing the edema.
They said that my body would literally have to grow from scratch or rebuild from atrophy all the inner workings to handle vastly more blood volume and heart pumping power. It's one thing to fix the heart but it's another to have the body systems ready for the upgrade. This is estimated to take about a year after the surgery... although that's for normal people, probably not people my size.
The surgeon told me -- three times no less -- that my valve was one of the worst he'd seen and that once I was really healed up, my life would be "so amazingly different" I wouldn't even be able to believe it.
I am on a beta-blocker for 'heart remodeling' (Coreg) and on Diuretics (previously Lasix/furosemide but I asked for a change to Demodex/torsemide which I got) but that is all. I am reactive to codeine and vicodin so the drug they gave me for pain was not do-able for me, gave me horrible nausea and they didn't send me home with any anti-nausea prescription. So I lived on gel ibuprofen (won't take Tylenol, I love my liver!) but I rarely take it now, and when I do, it's due to the side effects of the diuretics.
I have lost a lot of edema though I still have what I'm estimating is about 140# or more of it. When it's gone, my weight will be lower than I expected, but that's probably from losing lean body mass due to a few years -- and the last two in particular -- of being nearly bedridden.
So I am learning to stand, walk, be mobile again, I'm getting better all the time, re-developing all the body systems required. And the heart thing fixed my energy problem thankfully, although I still need to develop both muscle and cardio improvement.
The more I've learned about this the more I've realized that pretty much the last 20 years of my life have been affected by the heart-valve problem; especially the last ten; and acutely, the last five.
WEIRD: GLUTEN (and other) INTOLERANCE CHANGES
As a surreal side-effect though, by the time of the surgery, nearly anything I ate that wasn't meat caused massive "intolerance inflammation." I was to the point where I could hardly eat anything, it was horrible. But now, I can even eat wheat and rice, which used to destroy me even in tiny amounts, I can eat it outright and I do react, but more like I did a decade ago -- after 8 hours with rice, after about 24 with wheat, I get a little bit of lung asthma, that's all. I still don't really want to eat much gluten anyway, but not having to stress about every form of it even a little bit in something, plus half the spices in the world that were setting me off eventually, has certainly opened up my food options again. Bear in mind I live in Nowhere, Oklahoma. We don't have stores for herbs, there is no such thing as gluten-free bread in my walmart, really there are few options here. So limitations on foods tend to have a more dramatic impact here than they do for people who live in larger cities.
Long ago a chiropractor friend told me that when people have serious liver/kidney issues that are untreated, they seem allergic to nearly everything, but that it was because the body just didn't have the normal "tolerance" for the standards of life, like grass and laundry detergent. That if you dealt with the organs issue, this would change. I think this is true, as I saw that happen with someone I know. I'm wondering if the gluten thing might relate. By which I mean, yes it absolutely IS a problem inherently, but maybe whether someone reacts or not has a lot of variables -- both within their digestive system, and also in their immune system. Once my immune system was not getting so much of my blood poured back into my body with a massive valve leak, maybe it had the capacity to 'deal with' more issues from other things.
As I was not losing edema AT ALL after two months post-surgery, I went on a ketogenic eating plan, hoping that losing the base body water would inspire my body somehow. It really did. I lost like 66# of water in four weeks. But this had bizarre and very painful effects body-wide. It turns out that diuretics are one thing, and keto is another thing, but the two together do not end well. It's just not enough water -- my body told me in a dream. I tried going off the diuretics, but I grew massively in a week so I went back on them. I went off keto, and I grew but far less massively and over a period of weeks, but I didn't regain all that I'd lost of the water -- only the baseline (about 25#) I tend to carry at this size. I waited a few weeks and then tried again keto with no diuretics -- same result.
I am only just beginning a new plan -- sans keto, with restored diuretics -- tomorrow. It combines a variety of carb levels depending on the day (for fluid reasons) and intermittant fasting. So, we will see how it goes.
SO IN SUMMARY...
It turns out that years of life, utterly wrecked, were probably due to the birth-defect nobody knew about all along.
My body needs to rebuild muscle-etc. for mobility after years down. My body needs to build massively inside, veins arteries lymph and more for the change in blood volume/power. There's tons of edema to lose. And more fat as well. So there is plenty to do ahead.
But the good news is, I GET TO LIVE!
I thank God, the Universe, and anybody else I think is listening, every single day.