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I'm not drunk, I have Myasthenia Gravis, 5909 lamberto Place, Bellingham, WA (2025)

07/28/2017

GIVE-A-WAY!!!

This Silver Raven Wrap Ring can be yours, with your choice of birthstone!

To enter for your chance to win, All you have to do is:

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I will announce a random winner on August 1st!

Good luck everyone!!!

06/08/2017

In the 3 years since I posted this I've had 3 crisis and my symptoms have become an everyday problem. We need a world without Myasthenia gravis . Help us find a cure

05/15/2014

A few days ago a gentleman messaged me asking why I was such a downer about Myasthenia Gravis. He stated that I over did the symptoms and scared people for no reason. I've given this a lot of thought. Would this page be any help to others if I wrote about my days gardening or walking my dogs? " Oh I woke up and the sun is shining and I took some pills, Oh happy days'' How in the world can anyone get the word out about MG by posting nothing about the symptoms and the drugs and the real Life we have with MG. The truth is, living with MG sucks and the drugs that help me live with this rare disease suck even more. I wont complain about my life because I'm the happiest I've ever been. I'm not a happy camper when I'm sick from the drugs, the weight gain and puffy body. This disease IS scary. MG has a mind of it's own and you never know where it will take you. I began this journey feeling like the only person in this world that had to live with droopy eyes and double vision. I felt guilty for laying on the couch instead of sweeping the floors or folding clothes. Now through this page, I have found others who know exactly how I feel and what I go thorough to survive. I may walk and talk drunk at times, I lay down a lot and look angry on some days, this is just my life with MG. Am I to much of a downer? maybe. Scary? absolutely! Will I change how I write about Myasthenia Gravis? Never! On a last note.. The sun is shining, I did take my pills and it is a happy day! till next time my friends...X Anita

05/02/2014

How do you explain to someone how Myasthenia Gravis makes you feel? I'm tired but not the kind of tired you feel after a long day at work. It's an extreme fatigue feeling that can leave me with arms that feel like rubber bands or legs that are noodles. My neck will ache from trying to keep my head upright and the droopy eyes I hide with sun glasses. Some days I will choke on my own spit and I cant smile. My family knows to let me be for 20 mins after I take my meds because I feel sick. I sweat from the Prednisone I take so even on cold days you will find me outside fanning myself. I've lived with this disease for almost 40 years that the symptoms are second nature to me now. I know how to read my body and the dangers that MG could cause me but still I have days where I get scared, lots of them. Mostly at night. Today is so beautiful and hot but I don't dare sunbathe because for some reason this makes my symptoms flare. That's okay, I don't feel I'm missing out. I can't stress out on what I don't have or what I can't do or else I'd go crazy. I'm grateful for everyday I see and for my family I have around me. My future still holds on to the hope for a cure. For all of you who have MG, we have to fight a little harder and always know that I will be right by your side in this battle against MG. Till next post my friends always, Anita

02/14/2014

For as long as I can remember I have been popping Mestinon. I was so young when I was diagnosed with Myasthenia Gravis seems like eons ago. MG came into my life at a time where I thought I was invincible. I had no time to think that MG was rare or crisis that could happen at any time. I was told that I would be lucky to live to the age of 35 but to me that was a million years away. All I could think about was my life that awaited me. Of course my symptoms of MG have worsen with my age and I have taken set backs with my health and with this more drugs that have left me sick. Its easy to get lost with this disease. I found that its important to take tiny steps at feeling wonderful about myself. I need to feel good, be happy because when I feel good, I'm putting my MG in a good place and not in control of me. I don't have the power to eliminate this disease from my body but I do have the power to want the best of life. I tell myself that I am worth who I am, I believe in the person I've become and I have faith that I can truly achieve a fruitful life. I keep these words close at heart, they help on bad days when my physical health turns on me. Oh, MG can be so hard at times and its hard to keep a pure open mind but after all these years, I'm still here. If you could see me, I have one very droopy eye and sometime look cross eyed. My face can sage and I look angry. I have a hump on my back and I'm plump from the drugs I take to stay alive. I feel unattractive at times but you know, if I take away everything that MG has done to my body I still wouldn't be perfect! I still have the ability to experience the beauty of this world, to have love and friendship...Life. My name is Anita, I have Myasthenia Gravis and I still feel like the luckiest lady in the world.

11/14/2013

With Myasthenia Gravis there are degrees of severity. On a scale from 1 - 5 I'm a 3. That means taking a variety of drugs to help me cope with my MG symptoms of double vision, droopy eyelids and weakness. The drugs help but with that come the side effect from the drugs which can be horrible on some days. Here is an excerpt from one of my journals dated 6/10

Michael had to work so early today and we both are running around, he can't find his work pants. They were still in the basket of cloths I washed 2 days ago. I was to tired to get his lunch ready so I send him off with something frozen I found in the freezer. I finally sit down around 7:30 for coffee and take my meds gagging down one pill at a time. There are so many of them. I always get a little woosie but today the nausea hit hard and the stomach cramps send me rolling on the bed. Sweat is pouring from every inch of my body and I start to cramp up in my chest from cringing after each wave of pain. I will myself to relax, breath in deep exhale slowly I tell myself. I try to think of good things. My favorite color red and how pretty my toes look in this color... Breath in deep.... Lourdes is doing good, she beat the cancer so far. I need to go see her . I think about my Dad, My Mom, Funny how I want my mom when I hurt.. Okay don't cry big baby... Think Think ...Breath deep.... I thought about my crazy idea of breeding my Doxie's, I had a dozen little long eared wiener puppies running around my kitchen, puppy chow and p**p. I open my eyes and look at the puffy white clouds in the blue sky. I hear the neighbors kids playing and in the distance a lawn mower starts up. My pillow is wet and I'm finally at ease. I look at the clock, it's almost 9.

11/12/2013

I'm sitting here looking out at falls beauty. The lawn is fluffed up with bright orange and rustic brown leaves. Once and awhile the wind will blow another leave from the branch it held onto bravely all summer. I watch a lot from this spot in my living room. I see the seasons come and go. I listen to the traffic, the rain, the loud thump from music will drive by now and then. Some days I feel like a beautiful bird perched in a closed cage, only I'm not a bird, I'm Anita and my cage is Myasthenia Gravis. I have days where I will be hungry, to tired to get up and fix myself something or am I just to scared I will start to choke? I want to go for a walk, I wouldn't make it far today my legs feel like rubber. I'd retreat to my room and watch TV or read a book but my eyes are blurry. I should be use to days like today but I'm not or is it because I refuse to let this rare disease take control over my body. MG is a very evasive and extraordinary in how it works almost with a mind of its own. It finds ways to slip into any cracks of your life be it with illness, stress, the weather or just whenever. In the past 30 years there has been amazing works and discoveries that have brought us a greater understanding to how Myasthenia Gravis works. Is it to the point of a cure? Far from it. We only have enough understanding to help us try and live the best we can with this disease . The therapies and medications have harsh side effects but being able to live most days without the double vision, the extreme fatigue and easy breathing far out weigh those effects. So for today I sit here like I do on bad MG days, perched like a beautiful bird.. Thanks for listening to my ruff up my feathers! ...lXOX Anita

11/01/2013

Well its November and the weather has become chilly and wet, very typical for Seattle. I had no real issues this summer with the very warm weather, just small set backs with fatigue and breathing. My medication is still the same, Prednisone, Cell-Cept and mestinon and of course the other pills to help with the effects of these meds... sleeplessness, high blood pressure and moods. Its really a scary regime of meds I have to take to survive. Myasthenia Gravis is scary its self! I tell you I have to will myself to stay away from the open door to that pity party. I know this is horrible to say because I would never want anyone to know or feel what MG is but I am thankful that there are others out there who can understand the struggles I go through. The many pills and therapies that make me sick, the extreme fatigue, not being able to eat or walk. Sometimes when days do get bad I am scared. My MG is getting worse with age and with age comes more pills. I want to see a cure in my lifetime, that's all I've been wishing, dreaming and praying for the last few months. I am lucky to be a part of an MG family that I have found here to help me through my days with this disease. I have to say that Even though I have a rare disease, My life has been very blessed and I have accomplished so much. We need to find better treatments that are not so harsh better yet a Cure! I still have so much I need to do with life and I know you all do too............with much love and happiness to you all, always Anita xoxo

08/13/2013

The last few weeks have been a none stop blur! My Myasthenia Gravis has had no real issues, only the normal droopy eyes and being tired. I've been so busy with Sr. Prom, Graduation day, the parties, 4th of July and saying good bye to a very loved family member and I was able to spend much needed time with my family. My husband and I celebrated our 25th anniversary with a camping trip and all in all I am doing real good. I will get back on track with my MG page. I have tons of mail to read and lots of friends to contact. I hope your all doing well with the summer heat and all your meds are working out. I have been gone but your all not forgotten....will be back soon. Sending love and happiness your way....Anita

06/07/2013

I remember when my kids would watch Sesame Street and the show would repeat the letters and numbers so the kids would remember...repetitious learning. I have been posting everyday on facebook the same subject since June 1st that it is National Myasthenia Gravis Month. Over and over I will write about this rare disease and the drugs, the overwhelming fatigue and the scary symptoms we with MG will endure for the rest of our lives. With all my friends and my husbands friends, my family's friends and if you share, your friends will know and understand how important awareness about MG is for us. The cure is there.... together we can help our world find it!.....X Anita

05/29/2013

So I have a rare disease called Myasthenia Gravis. Anyone who has to live with this autoimmune disorder understands that it's easy to feel down, cry, and keep a positive out look on life. It's bad enough that I have droopy eyelids and double vision. I feel angry when I'm hungry but can't swallow my favorite salad and that scary heavy feeling I sometimes get in my chest. Even with all this happing the most unhealthy thing for me is getting caught up with MG. Everyday I read stories of pain, depression and recovery. How do I respond to such heartache. How can I help restore happiness when I myself find living with MG so hard. At first I tried to resolve my pain in research. I would search the web for any input I could find about MG. Words on my computer left me with a lot of knowledge but it still wasn't enough. I found part of my treatment was to find all of you. I have a personal connection to every story I read. What has helped me cope was to share my life with others who understand life with this disease. I have so much appreciation for the new friends I have found. The road with MG is a long and bumpy ride but at least I have you all to hold hands with and squeeze it once and awhile to be brave. Today I have no regrets in my life. I'm bless everyday to see the morning sun and I give thanks every night for my family and the best medicine I could ever take called FRIENDS!!! XX Anita

I'm not drunk, I have Myasthenia Gravis

07/28/2017

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05/15/2014

05/02/2014

02/14/2014

11/14/2013

11/12/2013

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05/29/2013

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