First of all, let me apologize to everyone in my life with chronic illness. I have people in my life with RA, MS, heart conditions, diabetes. If being in heart failure and having bad valves has taught me anything it is that being “chronically ill” isn’t a choice. Who would choose this? Sure, how one deals with it is a choice (mostly), and some chronic illness are caused by lifestyle choices. But absolutely no one wants to be ill forever. The number of illnesses listed as chronic don’t hold out much hope of cure. Some have very low life expectancies, in part because a large number of people with chronic illnesses choose death over a lifetime of medicine and disability. I understand that.
More than a few years ago, my sister, Piglet was diagnosed with lupus. She continued to play in the sun and enjoy her red wine and exotic cheeses all of which are discouraged with a lupus diagnosis. She just said “nope,” and ignored poor lupus until it gave up and went to plague someone less bossy, I guess. I can see Piglet telling lupus just to get out and lupus being too scared not to comply. Piglet does have chronic migraines. Actually, I don’t think “migraines” (plural) is correct. I seems like it has been one continuous migraine for decades. She is a highly functional migraine sufferer. She is the toughest person I know. It doesn’t mean she does not suffer; she just doesn’t allow the suffering to define her or prevent her from doing what she chooses to do.
I hate to admit it, but I used to have little tolerance for people with chronic illness. “Change your diet,” I advised. “Stop smoking. Stop drinking. Get more exercise. Cure yourself.” God, how arrogant I was! I never quite said, “suck it up, Buttercup,” but I’m sure it was heard in between my oh-so-wise and helpful advice. “It is easy,” my message said. “Just eat more salads and stay away from sugar. Get more vitamin D. Take a walk in the sun. Keep a positive attitude!”
For me, keeping a healthy weight and positive attitude was the answer to everything.
… And the Universe laughed. The Universe laughed, really hard, milk spewing out the nose, slapping the table, stitch in the side, stop-just-stop, laughing.
Thursday, I was diagnosed with osteoporosis in my lumbar spine, and “at risk” in the other areas they tested. My first response was a stream of obscenities. “The bullets just keep coming,” I said after I stopped cussing.
The doctor told me I was in the high risk category because I had maintained a healthy weight my whole life. W in T actual F? That’s the pay off for not going for seconds?! “Yes, thin women are at the highest risk of osteoporosis.” I was told. “Heavy women never get it because they are basically weight training 24/7/365.” Weight training is the number one osteoporosis prevention, with eating a calcium rich diet coming in a close second.
A year before my open heart surgery in September 2023, I was very active. I walked miles every day and I had a daily yoga practice. I maintained the yoga but walking for miles became impossible as my heart valves got worse. Yoga is a weight bearing, right? I sometimes have the weight of my entire body on my arms during Chaturanga (yoga pushups). I use resistance bands instead of the traditional yoga strap. I thought I was safe. As far as calcium is concerned, I put kale in things kale was never intended; it makes a lovely crust on casseroles and adds color to sauces.
“But, Diane,” you might ask, “you are vegan so isn’t the lack of dairy products a concern?” Nope, humans do not absorb the calcium in milk as efficiently as they do the plant based calcium. Also, dairy products are high in many detrimental things, including the trauma and grief of commercial dairy cows. I don’t need to add trauma and grief to my diet; I can get those externally without the extra calories, thank you.
I knew my thoracic spine had been affected by the radiation that caused my heart valves to degrade, my heart to start failing, and my thyroid to completely tap out. I have some tiny fractures there. I have yet to find a doctor who will do anything about those but shrug in an “it is what it is” sort of way. But, now my lumber spine is affected, which I suspected because there is pain there.
It feels as if I am swimming upstream, health wise. I know what that is like, too. I tried it – swimming upstream, I mean. It was in the Rainbow River in Florida a few years back while trying to retrieve a scuba fin that fell off while diving. Swimming against a flowing river is hard with a healthy heart, but an extremely bad idea with bum valves. It nearly ended me and required a rescue by my dive buddy, Charles. Afterward, he grounded me from ever diving again.
My blood work is perfect, my weight is on the low side. I am fully aware and in control of everything that crosses my lips. Nothing processed, no animal products (except the occasional egg laid by my own happy hens), natural sweeteners like honey or pure maple sugar, no artificial color, flavors or GMO. No bread unless it is homemade wholegrain sourdough. Pastas are largely whole wheat or made out of chickpeas or lentils or some other plants. Rarely any dessert. This, of course, makes me an absolute joy to eat with.
Keeping a positive attitude is the hardest part. Actually, keeping a positive attitude while eating a cauliflower crust pizza without cheese is the hardest part. Oh, sure, have found some pretty good vegan cheese substitutes, and I make a “not bad” cheese sauce from cashews and nutritional yeast, but nothing compares to the joy of burning your chin with a string of gooey lava-hot mozzarella. Is that joy worth the health risk? Don’t answer that.
My friend, Marcie, stopped by yesterday to buy some of my homemade jam and relish. She brought me a lovely bouquet of white mums. I was out planting bulbs, wearing my regular fall outdoor work attire. She said I looked good. Honestly, no one appears unhealthy wearing flannel, work boots and carrying a spade. She asked how I was doing, and though I didn’t intend to, I shared my struggles since the valve repair last month. My heart is still in failure, so I still have to take lots of breaks and, add insult to injury I have osteoporosis. She seemed oddly cheered hearing that heavy women don’t get osteoporosis. She thinks she’s heavy; most women do. She is not; she is strong and muscular. She enjoys weight training and is safe from this affliction. Good for her! She deserves it. Marcie lost both her sisters to chronic illnesses. Her father died recently and she is now the solo keeper of her mother who, let’s just say, is not the person from whom she inherited her sunny disposition. She is one of the sweetest, most generous people I know. She is also one of the most joyful, and positive.
My top support person is Charles. He will not abide my negativity for long, which, in the moment really pisses me off, but I also know is a good thing. If allowed, I could get down there and stay forever. Last night, in a (not all that rare) moment of weakness, I confided that I was afraid one day I’d be all bent over and broken, with an oxygen tank in tow, looking like Quasimodo and sounding like Darth Vader. My larger than life fear is that soon I will repulse him and he will stay only because he’s a good guy. He said he would just put his contact lenses in the opposite eyes so he couldn’t see me. “As far as dragging the oxygen tank goes,” he said. “At least you’ll be easy to catch.”
“But would you even want to catch me?” I asked.
Just so you know he’s not a heartless ass, he also said he was scared too and that we would get through this together.
My other top support person is Piglet. She is a solution finder. She likes to redirect thoughts and scold me not to invite the darkness in. It is good solid advice. It is also a hard ask. Sometimes I need to sit with the darkness. He’s here all the time anyway. Most of the time, I try to ignore him, but I know he is there. He sits back there, over the right shoulder, just waiting for an invitation to envelope me in fear and sadness.
I know that studies show a positive attitude has just as much to do with recovery as taking your medication. I do a good job most of the time, but staying up all the time is exhausting. The darkness says, “Come over here and rest awhile. Let your guard down. Just wail and moan for fun. You deserve a pity party. Let me throw one for you.”
I am fortunate that neither Charles nor Piglet will tolerate it. Given the chance, I might stay in the darkness so long I wouldn’t know the way out. My friends and family, my kids, my siblings, my husband, all try to stay positive and keep me positive. But sometimes I need to exhale and acknowledge that this is so hard.
Sure diet and exercise is a great way to stave off illness and if I weren’t diligent about it all I know I would be in much worse shape than I am now. I know that with absolute certainty. I know my efforts are why I have beat the five year post-diagnosis survival rate of most heart failure patients and lived to marry Charles and build Sugarberry Slope. I know it is why my doctor chose to take a chance on me last month and repaired my mitral valve. I am thankful I have the self-control (bull-headedness).
I also know that I really control nothing and the darkness will always be there. I need to avoid it like I do dairy products. But, still…. cheese.
