A few months ago, I ventured into the forums on a Pulmonary Arterial Hypertension (PAH) website. My first foray into the support group there brought me to a thread about a woman with severe and advanced PAH. She was on an IV pump, and the medication that’s used in that pump has a half life of about a minute or so, so coming off that medication can often mean death. It’s such a required part of her life, that if the IV has warnings on it for paramedics letting them know NOT to remove that IV and to start a new one before removing that one. There’s like a 2 minute window to get back on these meds. This woman had lived like this for years, and I came in to the forum at a time that she had just made the decision, with the help of her pastor and her husband and family, to stop her medication. Though no one said the words, basically, she was telling everyone she was ready to die.
I was newly diagnosed with PAH when I came in there, still unaware fully of what this disease was and how it would affect my life. I have to admit, I left those forums and I have never been back. It scared the hell out of me, and for a long time, I hesitated to seek out other stories. But then, the PAH newsletter started coming to my inbox. Each edition I read, I noticed something: Unlike the newsletters or articles I’ve read about other medical conditions–all of which were great and gave great advice and all that, not knocking them–these newsletters from PHA actually resonated with me. They were talking about what *I* was going through. Instead of getting angry and frustrated when reading them, I nodded my head in knowing and understanding. So I slowly ventured onto this site, and I read. I feel very grateful to my Facebook friend who sent me the link to it and sent me much information about PAH from when her husband had been a member of this group too. I won’t link to her, since I don’t know if she wants the attention, but I am grateful for her every day.
I’ll be honest with you. There are days I’ve been so angry. I’ve read things before, such as people fighting cancer, and actually been envious of them. Why? At least they know what they’re fighting, and they have something to fight, with an outcome, and end game. They know, either they win and go into remission or they lose and they die, but in the meantime, they have something to fight and a goal to achieve. People did fundraisers for them. People hold awareness campaigns and rallies. Everyone has heard of their disease.
I was envious because I didn’t have anything ‘to beat’. Sure, I could fight, but it was a battle that I could neither win nor lose. There was no outcome for me. THIS is all there is, and there is nothing I can really do to make it better, and I can only sit around and expect it to get worse. Nobody is holding a fundraiser for me. There’s very little awareness going on for PAH. It’s such a rare condition, most people have never heard of it. Hell, I said to someone the other day that I had Pulmonary Arterial Hypertension, and the person said, “Oh, my dad has high blood pressure too. That’s no big deal.” Sigh.
Now, today, I feel differently, quite a bit differently, in fact, but that was honestly where I was many months ago.
I’ve begun exercising. The PAH website says that for some people, exercising builds up a tolerance, and you can do a little more each time you try. For some, they have been able to build up strength in the weakened lungs and actually require less oxygen and can walk and be more active without as much shortness of breath. It doesn’t work for everyone, but it’s worth trying. Right now, I’ll be honest: I’ve got about 2 minutes of walking in me before I simply cannot go any further. But you know what? A few months ago, I couldn’t even lift my foot to get on the treadmill to walk, much less consider going 2 minutes before I can’t breathe. And I’ve noticed, during the day, when at rest, my oxygen levels are staying higher. I still can’t go more than 2 minutes. Walking to the bathroom and back still makes me short of breath and makes my heart race, but it’s better than it was a year ago. Better than it was a couple of months ago, even, and that’s something.
I’ve radically changed my diet. I am trying my best to eat only all-natural, organic, non-processed foods, no wheat, no gluten and limited soy. Grass-fed meats when possible. It’s been a challenge, because I do not always feel well enough to cook, but with my family and their help and a few adjustments (like buying a great new large George Foreman grill! That sucker cooks fast!), I’ve been doing really good. My one vice is that I like a nice, slushy, ice-cold Diet Coke now and then, and I refuse to give that up, but I probably have less than 2 per month. Food really tastes good when you eat the good stuff. I don’t know how I ever ate some of the stuff I used to think was healthy, now that I look at the labels and really pay attention to it. And yet, it’s not taking a lot out of me to plan the menu, study the food, research things, find new recipes, etc. I want to make it where the food is so good, so varied, and so flavorful, my family doesn’t even realize it’s a ‘special’ diet, and just enjoys trying what new thing Michy is going to make today. Today, we had the best orange vinegar salad dressing, so easy to make, so healthy. I love doing this and I love how eating good makes me feel emotionally. I’m doing something good for myself, and it’s going to extend to my family too, because they will eat healthier and better.
I can’t always cook myself. My son, in particular, has become my sous chef, and we work together, sometimes in the kitchen, and when I’m having a bad day, sometimes from my recliner. He’ll bring me a cutting board and bring all the veggies and meats in to me, and I’ll slice and prepare them on my laptop table. I’ll get everything ready, do all the spicing and preparing, and then he just does the last part of it, like popping in the oven, grilling on the grill, or searing in a pan. He’s actually starting learning how to put spices together himself, and at one point a while back, he was talking about maybe going to a culinary school. Chefs can make good money if they’re skilled, and I think he’d be good at it.
Anyway, I read something on the PAH site today that talked about redefining who you are, now that you have PAH, because you may not be able to be the same person you thought you would be. Maybe you won’t be a runner, or go play basketball with your kids, or ride your bike or go hiking or things like that. So to feel good about yourself, you have to make up for that loss of identity. You have to basically change who you are–but not so much in a bad way–more like, okay, if I could never ever do X again, what would I do instead? And then you become the person who does Y instead of the person who was X.
I think that’s why I’m into the food stuff. I can’t do many of the things I used to enjoy, so I’ve replaced some of those things with cooking, menu planning, making recipes, trying new foods, ordering foods from specialty places, etc., and it’s something I can do with my family and for my family.
That’s the other part of my identity that was suffering. I was the person who DID things for my family to show them I love them. I was the one who washed clothes and kept them folded and in the drawers. I was the one who would run into the laundry room and toss a towel in the dryer so he’d have a nice warm towel when he got out of the shower. I’m the one who cooked and cleaned to keep a nice home for my family. This was how I showed them I loved them, and these are things I cannot do the same way anymore. So instead, by planning these menus, cooking these good, healthy foods, I’m showing my family that I love them, am doing something for them, anything, so I can still be a part of this family and contribute. For the past year or two, I’ve felt I’ve only taken from my family. Now, I feel like I’ve found a passion that allows me to give back to them too. That’s helped me, some.
On this PAH website, more than any other website I’ve been to, I feel a sense of understanding. Yes, there are plenty of people out there with illnesses, diseases and disorders that need support and friendship, but unless they have experienced what *I* have experienced, our understanding and connection is not going to be the same. I’ll give you an example, and I am just being as honest as I can be here, so please, my friends with fibromyalgia, don’t get mad at me and try to understand the vein I’m working in here. I have, in weak moments, gotten frustrated with folks on the support forum who have fibromyalgia, but have no other medical conditions. Yes, I know how debilitating it can be. How do I know? Because I’ve been diagnosed with it too. With all the things have to deal with, I would be tickled pink if fibro was ALL I had to deal with. So when I see people complaining about fibro symptoms, sometimes I just want to cry and other times I just want to scream, “You don’t know how luck you are!”
Since that’s not supportive, and it’s not really how I feel, I have to back out of those types of groups, because I don’t ever want to BE that person. You know? That’s NOT who I am. But on a bad day, that’s how I can feel, sometimes. Nobody’s pain is ever worse than our own, simply because we can only feel our own. Nobody else can feel it for us. My being in pain, suffering, hurting, in no way makes your pain less. The more pain I feel, doesn’t change the pain you feel. The REAL me says to you people, do what you can, when you can, and when you’re at your lowest point that you can’t find your gratitude, be grateful your situation isn’t worse.
See, when I start feeling really whiny myself, I remember a woman who was having to make the terrible decision to stop her treatment, knowing she would literally suffocate to death within a matter of minutes or a few hours after stopping this medication. And I think about her family, who have to say goodbye to her, but who really don’t want to see her go. I think of how that could easily have been me… and in the face of that, nothing seems insurmountable. I can’t tell that woman what her story has done for me, but it has given me hope. I hope, maybe, in some universal way, that might make what she had to do for herself worth it. I’m certain I’m not the only one she’s touched in some way.
So use me, if you need, or someone else, on those really, really bad days. See, I give you permission to use me if you want. When you’re having a bad day, say to yourself, “At least I’m not Michy.” And maybe it’ll make things a little better. For me, I think of those suffering from things that scare me, and I express gratitude to the universe that I am as healthy as I am, even if that’s not as healthy as I’d like to be. Because, you see, that old adage: Things can always get worse–that isn’t a negative thought at all. It’s a reminder to be grateful for all you DO have.
And that’s where I’m trying to be and where I’m trying to work from. I’m eliminating the things that make me feel bad, supporting myself on the things that make me feel good, trying to avoid stressors, eat better, sleep better, love better, be better… and on the days I can’t do any of those things, I am simply grateful I’m not someone else who is worse off than me. Then I send up my prayers and love and gratitude to everyone who has to suffer from anything, real or imagined, because suffering is not what we were meant for in this life. It’s just not.
And when things get really, really bad, I am simply grateful I wasn’t born a bug. I really dislike most bugs, and I’ve smooshed enough of them out of existence in my lifetime, so I am truly, completely grateful I am not a bug.
With that, I’ll probably be reincarnated as a bug in my next life. Not that I believe in reincarnation, but I figure, if it does exist and happen, it probably doesn’t care whether I believe in it or not: I’m still gonna be a bug.
Love and buggy stuff,