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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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Wisest Elder Ever
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Nice to see you posting again Annie. I had been hoping you'd be back one day.
![]() This is a wonderful post, and you might be interested to know that we adopted a new kitten this summer from an upNorth Rescue, and named her Maya, partly because it is a pretty name, and partly as a reminder of the Mayan calendar date. (we call her our "end of the world" cat) We lost 4 cats in 2 years, and that was so painful. I am hoping this one will last thru our senior years now. Sheba and Tippy were very very old , 24 and 20, Oreo 14 had a rare cancer, and Houdini kitten disappeared last May- ![]() ![]() So welcome back!
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | AnnieB3 (09-23-2012) |
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#3 | ||
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Member
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That post was great! Thank you for sharing. I am NOT a talker but your words and insight and ideas really Make me wish you lived near me so we could be friends and sit and talk for hours about such interesting concepts and ideas.
By the way I live nearby a port where cruises go out and I can't do it as much as I used to but I love to take my dogs to a field look at the sky, clouds and just hang there to soak up all the positive "energy" from so many thousands of people with positive energy. I have also thought it would be great to capture that positive energy and release it in places where there is so much negative energy (courthouse was my reference at time all though I haven't been able to do a real hearing in months) |
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"Thanks for this!" says: | AnnieB3 (09-23-2012) |
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#4 | |||
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Member
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Annie, it is nice to meet you. My name is Kathie and I'm a newbie here. They only "suspect" me of MG, I am still waiting for the neurologist visit to know for sure. I think we have a lot in common. I don't like being almost broke, older, not quite disabled yet, and overweight. I am still able to work, but worry what will happen if that situation changes. And of course, I have been a sci-fi fan since I was a child. I thought I would grow-up and marry Dr Kirk and spend the rest of my life discovering new worlds. Today, I would just be happy to get around in this world a little better.
I appreciate your philosophy that this disease cannot take away the thing that makes me "me". I am sad at the prognosis, but it has made me slow down and be more appreciative of the small pleasantries of the day. Thanks for the inspiration, kathie ![]() |
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#5 | |||
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Member
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I guess that this is a positive energy statement sort of. My daughter volunteers with a cat rescue group in her town 50 miles from here. She was showing me pictures of some of the kittens that desperately need homes if they are to live. To make a long story short, one of them will be moving in with us next week.
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Celeste |
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#6 | |||
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Member
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Oh, Annie! It is so good to see you post again.....I've been worried.
I always learn something when I read your posts -- sometimes I have to do a little research so that I can understand what you are talking about (my ole brain ain't what it used to be). Thank you for sharing your journey, your innermost thoughts, and deepest feelings. You are one of the bravest people I know. ![]()
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~jana |
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"Thanks for this!" says: | AnnieB3 (09-23-2012), pingpongman (09-23-2012) |
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#7 | ||
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Grand Magnate
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Thanks, Mrs. D. I honestly wasn't sure I'd be able to handle anything soon. I'm so glad you've been able to get new kitties after so much loss. It's been a year and a half and I still miss my shih-tzu Teddy. I can't handle another pet, so he was "it" for me. Houdini seriously disappeared? That's both so sad and ironic.
![]() Steph, If only MG would let me talk for hours! There aren't a lot of people I know who are so scientifically inclined. It's hard to know as much as I do (which is relatively a small amount) and not be able to talk about it much. BTW, you live near one of the best centers of energy in the world. Have you ever looked at the Becker-Hagens grid, aka ley lines? When I couldn't find a good neuro where I live to diagnose me, a woman named Sharry referred me to her neuro in Florida who is an MDA Director and MG expert. I always felt better in Florida. It honestly energized me. It might've had a little to do with walking on the beach too. ![]() http://www.exohuman.com/wordpress/becker-hagens-grid/ http://www.crystalinks.com/grids.html Hi, Kathie. Welcome! I think there are a lot of women who would fight over Shatner's Kirk. Though the new Chris Pine version isn't so bad either. I'm trying to catch up on posts but it might take awhile. I really hope your docs can help you figure out what's going on. Have you seen other docs like a neuro-ophthalmologist (if you have ptosis)? It's hard getting used to MG. I'm used to it but I still get surprised by it. You may have a particular "pattern" of weakness after you do an activity but then it up and throws you a curve ball from time to time. Like, today I'm going to make you weak for no apparent reason and the plans you had you'll have to change! Of course, I can only take Mestinon (plus Flovent for asthma which helps MG too), so my situation is a bit different. I didn't so much want to marry Kirk but be Kirk - a female version. Look below for me as Kirk from my book which has yet to be put up as an e-book. ![]() Celeste, Yes, it's always positive when you help out an animal. Pets are hard work but they can actually extend your life! We all need that unconditional love, especially if we don't get it from people. I really wish I could afford another dog, both physically and financially. I just went through too much medical stuff with my last 2 shih-tzu's. If I went through it again, it might do me in! Jana, You're so funny. Brave, eh? I think MG makes all of us brave. We don't know if we can finish eating. We don't know if we can drive back home from running errands. Sipping water is scary. You have bad bulbar symptoms like I do. I think we're both pretty damn fierce. Sorry about the vague science info. It's not a topic one can whittle down into a sound bite very easily. ![]() Okay, Mike, I'm glad you're thankful but how are you doing?!! Last edited by AnnieB3; 09-24-2012 at 12:33 AM. |
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"Thanks for this!" says: |
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#8 | ||
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Member
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Celeste
What a lucky kitty! I hope you soak up, enjoy the fun playful energy. Steph |
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"Thanks for this!" says: | AnnieB3 (09-24-2012), southblues (09-24-2012) |
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#9 | |||
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Wisest Elder Ever
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When our two very old kitties died, close together, 2 months apart, I was crushed. After 3 days, during a cold early January, I looked on Craig's list, and found Weezie. She was left behind from a family litter, as no one wanted to adopt her. She was timid, and afraid of people.
She latched onto me immediately and has turned into a very special cat. When Houdini went missing I was sick over that...no more cats, my brain and heart told me then last May! Then Oreo's remission of her cancer ended and we had to put her to sleep just before our vacation in late July. This all rather piled up on me....and a friend of ours upNorth who runs a Rescue...promised me a nice kitten. And she delivered also. I do believe we need a time of mourning. And each pet IS a different personality. But what we receive from them is very important to me, so in the end, we have little Maya now. She is special too. We've nurtured her from a frightened feral baby who hid in the house, to a more comfortable affectionate cat. Watching her grow is a special feeling, not unlike growing flowers from seeds, which I also do each spring. No matter how terrible I feel some days, or how much pain I have, it doesn't seem to overwhelm me when I have something or someone to nurture. I found myself after Houdini's loss, looking at rescue places and photos of kittens. So now we've taken the emotional plunge with another cat. Weezie has been fabulous with Maya too...helping like a big sister, from the first day! She has been instrumental in taming this frightened, lost little kitty from the Upper Pennisula of Michigan! ![]()
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#10 | |||
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Member
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Oh, Annie, I LOVE your art!! So glad you are still creating!!
BTW, I loved the old Star Trek series -- but, the new movie is pretty darn good, too!!! Doesn't hurt that Chris Pine has the most beautiful eyes! ![]()
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~jana |
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"Thanks for this!" says: | AnnieB3 (09-24-2012) |
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