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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Grand Magnate
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Hi, everyone. I hope you've all been doing well. I've thought of you often. Pour yourself some tea or coffee - this will be my longest post ever. Please do not "re-quote" it in a response or it'll be way too long.
![]() I know this is simply a forum of "strangers" looking for answers and support but it's been a lot more than that to me. I met a few friends here and one that I've known now for over 12 years. Trying to help people here has been an important part of my life. It's hard to say if I helped anyone but, if I didn't at least try, I think it would've haunted me. Which is the main reason why I'm back. Since 1998, I've felt as though I've been in a medical - and a life - tornado. The reason I left the forum was due to how incredibly depressed I was and for the fact that I didn't know why I was even on the planet. And, yeah, I wasn't sure if I wanted to be. Many of you know how MG can tear up your life and you can end up wondering, "What's the point?" Though philosophically opposed to "suicide," it was starting to look appealing. And, like some of you, simply making meals and doing the dishes can be all I can physically handle every day. I don't have a man in my life to help, though I do have support. But at the end of the day, we all have to deal with our lives on our own. I personally think an MG diagnosis should not only prompt a prescription for Mestinon or other drugs but prescriptions for a cook and a cleaner. Then maybe we can not only do what we have to but what we want to. MG is with us every day and it's a full time job that I'd often like to quit. That combined with other medical hurdles and personal challenges, like being broke and questioning the purchase of a $2 movie to distract me, have been a bit too much for me. I have a kinetic personality and MG is probably the worst disease I could've gotten. ![]() So I've been spending my time soul searching and trying to heal. Well, that and doing some long overdo cleaning. How long does it take for you guys to clean 1/4 of ONE room? ![]() Many of you guys know that I'm a science nerd. I have been one my entire life, plus being an artist and writer. I'd already watched science and sci-fi stuff since I was a kid, including racing home to watch Captain Kirk and crew when I was 10 years old and most recently the "Ancient Aliens" TV series. A year and a half ago, a stupid movie on the Sci-Fi channel made me revisit the "galactic alignment" that is going to happen this year. That lead me on a path that has been both exquisitely frustrating and one of the best learning curves I've ever had. It's also fine-tuned my BS detector, since a lot of information out there is a baloney sandwich. ![]() Numerous civilizations, not only the Mayans, have spoken of the 12-21-12 galactic alignment as a significant one in the evolution of earth. Some people say it'll be "Armageddon," which I think is fear mongering and nonsense. Most researchers, including NASA, see it as a transformational event. The entire solar system is going through relatively fast changes, such as Venus heating up and having a significantly greater green glow, Mercury's magnetosphere becoming stronger and Mars getting clouds and an ozone. Earth saw it's hottest year on record this year. And, like David likes to say, there are no SUV's on Venus causing its global warming. This topic is extraordinarily fact packed and requires a ton of reading but it's beside the point I'm trying to make. So, "what if" we are all going to "die" or transform at the end of the year? That thought alone is what yanked me out of my depression. ![]() And then there's doctoring. Since 1998, doctors became the cart dragging this horse. I've now cut the reigns to all of them and don't let them near my unbridled self unless I absolutely need something. And when I return home from a doctor appt., they're left at the door like my shoes. They have been summarily purged from my psyche, where they've been living like parasites. Or, rather, where I've "allowed" them to live. No offense, Alice; though I know you know what I mean. The only one who gets to have power over me anymore is me. Have I come to the "acceptance" phase of grieving MG? No way because that will never happen. What I've done is come to the acceptance phase of ME. No, I don't like that I'm broke, older, disabled, overweight and so many other things that I never used to be. But that's the "deal" I have to deal with. I've taken time to know myself again and what I love about my world and myself. And I've decided that it's not only enough but that I am who I am for a reason and I should damn well appreciate that fact! And I think that "grace" finds us when we're on our true path. Besides purging doctors, I've also forgiven everyone who ever did wrong by me or hurt me and asked - even if only psychically - for everyone to forgive anything I ever did that hurt them. I've decided that loving energy is the only place to exist in, even if that is a seriously hard daily challenge sometimes. And I couldn't truly be "free" until I let go of any hurt or pain from the past. And that includes any guilt I might have over decisions I made for myself. Guilt helps no one. Forgiveness helps everyone. ![]() So many times, there are posts about vitamins and other alternative therapies that might make MG better. We do have to deal with the reality of what medicine has given us for drugs or other treatments. But when you look at certain scientific studies, you have to wonder what we are all missing. One study had two separate containers of cells and when the one got written messages like "love" put in it, they multiplied much faster than the other one (sorry, I don't have the exact details of that one - David would). In other words, they thrived. And Russian scientists have done studies on pyramids (yes, like the ones in Egypt and all over the world) where rats are given cancer (not nice). The ones in the pyramid had their cancer cured while the ones who weren't didn't and died (again, not nice). The point is that there's so much about "energy" and our DNA/RNA that we don't understand. It is thought that pyramids are indeed sources of energy or "power generators." That's fact, not fiction! No, I'm not saying that you're responsible for your disease! That's silly and fraught with implied guilt. And I'm not saying that sitting under a pyramid will cure MG!!! Especially if you roll your eyes while you're under one. ![]() ![]() All I can do is follow my own path and stay true to who I am, no matter who doesn't like it or me and no matter what happens or doesn't on 12-21-12 or any other day. How many people in this messed up world really think that they matter? And that's why I wanted to share part of what has been the most difficult journey of my life in the past many years, especially this last year, with you. Simply the thought of possibly losing all of what I love made me realize that it's not the "things" or the disease or the rest of the "physical" world that makes me be okay or not okay. It's intangible love that does that. Love of self can't get sick or lost or broken. Love of self is always there - if we want it, if we choose to have it (with or without antidepressants). ![]() If it helps you in any way, I'm grateful. If not, so be it. But I value all of you and needed to share myself with you, in a way I haven't in the past. Getting past the bad to focus on the good has truly been a leap of faith. When I can pop in on the forum and help, I will. When I can't, I won't. ![]() Thank you to everyone who has been so supportive of me through this very tough time. You know who you are! ![]() Okay, that's the end of my monologue. All my best, Annie ![]() That is what I won't be doing because I now am "allergic" to the sun! They don't think it's lupus but they don't exactly know yet why I get a rash out in the sun except that it's "Vacuolar interface dermatitis." It's never nothing. Last edited by AnnieB3; 09-23-2012 at 12:57 PM. Reason: My Dad was an English teacher . . . |
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"Thanks for this!" says: | alice md (09-23-2012), Anacrusis (09-23-2012), pingpongman (09-23-2012), rach73 (09-23-2012), StephC (09-23-2012), teresakoch (09-24-2012) |
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