{"id":610,"date":"2012-06-10T21:02:56","date_gmt":"2012-06-10T21:02:56","guid":{"rendered":"http:\/\/michelledevon.com\/?p=610"},"modified":"2021-01-03T21:05:35","modified_gmt":"2021-01-03T21:05:35","slug":"doing-some-thinking","status":"publish","type":"post","link":"http:\/\/michelledevon.com\/index.php\/2012\/06\/10\/doing-some-thinking\/","title":{"rendered":"Doing Some Thinking"},"content":{"rendered":"

A few months ago, I ven\"\"<\/a>tured 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\u2019s used in that pump has a half life of about a minute or so, so coming off that medication can often mean death. It\u2019s 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\u2019s 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.<\/span><\/p>\n

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\u2019ve read about other medical conditions\u2013all of which were great and gave great advice and all that, not knocking them\u2013these 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\u2019t link to her, since I don\u2019t know if she wants the attention, but I am grateful for her every day.<\/p>\n

I\u2019ll be honest with you. There are days I\u2019ve been so angry. I\u2019ve read things before, such as people fighting cancer, and actually been envious of them. Why? At least they know what they\u2019re 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.<\/p>\n

I was envious because I didn\u2019t have anything \u2018to beat\u2019. 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\u2019s very little awareness going on for PAH. It\u2019s 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, \u201cOh, my dad has high blood pressure too. That\u2019s no big deal.\u201d Sigh.<\/p>\n

Now, today, I feel differently, quite a bit differently, in fact, but that was honestly where I was many months ago.<\/p>\n

I\u2019ve 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\u2019t work for everyone, but it\u2019s worth trying. Right now, I\u2019ll be honest: I\u2019ve 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\u2019t even lift my foot to get on the treadmill to walk, much less consider going 2 minutes before I can\u2019t breathe. And I\u2019ve noticed, during the day, when at rest, my oxygen levels are staying higher. I still can\u2019t go more than 2 minutes. Walking to the bathroom and back still makes me short of breath and makes my heart race, but it\u2019s better than it was a year ago. Better than it was a couple of months ago, even, and that\u2019s something.<\/p>\n

I\u2019ve 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\u2019s 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\u2019ve 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\u2019t 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\u2019s 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\u2019t even realize it\u2019s a \u2018special\u2019 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\u2019m doing something good for myself, and it\u2019s going to extend to my family too, because they will eat healthier and better.<\/p>\n

I can\u2019t always cook myself. My son, in particular, has become my\u00a0sous chef,<\/em>\u00a0and we work together, sometimes in the kitchen, and when I\u2019m having a bad day, sometimes from my recliner. He\u2019ll bring me a cutting board and bring all the veggies and meats in to me, and I\u2019ll slice and prepare them on my laptop table. I\u2019ll 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\u2019s 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\u2019re skilled, and I think he\u2019d be good at it.<\/p>\n

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\u2019t 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\u2013but not so much in a bad way\u2013more 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.<\/p>\n

I think that\u2019s why I\u2019m into the food stuff. I can\u2019t do many of the things I used to enjoy, so I\u2019ve replaced some of those things with cooking, menu planning, making recipes, trying new foods, ordering foods from specialty places, etc., and it\u2019s something I can do with my family and for my family.<\/p>\n

That\u2019s 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\u2019d have a nice warm towel when he got out of the shower. I\u2019m 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\u2019m 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\u2019ve felt I\u2019ve only taken from my family. Now, I feel like I\u2019ve found a passion that allows me to give back to them too. That\u2019s helped me, some.<\/p>\n

On this PAH website, more than any other website I\u2019ve 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\u2019ll give you an example, and I am just being as honest as I can be here, so please, my friends with fibromyalgia, don\u2019t get mad at me and try to understand the vein I\u2019m 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\u2019ve 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, \u201cYou don\u2019t know how luck you are!\u201d<\/p>\n

Since that\u2019s not supportive, and it\u2019s not really how I feel, I have to back out of those types of groups, because I don\u2019t ever want to BE that person. You know? That\u2019s NOT who I am. But on a bad day, that\u2019s how I can feel, sometimes. Nobody\u2019s 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\u2019t change the pain you feel. The REAL me says to you people, do what you can, when you can, and when you\u2019re at your lowest point that you can\u2019t find your gratitude, be grateful your situation isn\u2019t worse.<\/p>\n

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\u2019t want to see her go. I think of how that could easily have been me\u2026 and in the face of that, nothing seems insurmountable. I can\u2019t 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\u2019m certain I\u2019m not the only one she\u2019s touched in some way.<\/p>\n

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\u2019re having a bad day, say to yourself, \u201cAt least I\u2019m not Michy.\u201d And maybe it\u2019ll 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\u2019s not as healthy as I\u2019d like to be. Because, you see, that old adage: Things can always get worse\u2013that isn\u2019t a negative thought at all. It\u2019s a reminder to be grateful for all you DO have.<\/p>\n

And that\u2019s where I\u2019m trying to be and where I\u2019m trying to work from. I\u2019m 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\u2026 and on the days I can\u2019t do any of those things, I am simply grateful I\u2019m 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\u2019s just not.<\/p>\n

And when things get really, really bad, I am simply grateful I wasn\u2019t born a bug. I really dislike most bugs, and I\u2019ve smooshed enough of them out of existence in my lifetime, so I am truly, completely grateful I am not a bug.<\/p>\n

With that, I\u2019ll 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\u2019t care whether I believe in it or not: I\u2019m still gonna be a bug.<\/p>\n

Love and buggy stuff,
\nMichy<\/p>\n","protected":false},"excerpt":{"rendered":"

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