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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Member
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One of our own, known as “justdeb” died today. She hasn't been very active on the forums the last several years, and in early years would oftentimes find herself in controversy, because she was nothing if not strong willed.
I met Deb online 11 years ago. We began instant messaging and spent many hours discussing MG, treatments, symptoms as well as religion (she the zealot, me the skeptic), education, pets, food and most of all family. Our children are all similar ages, so there was never a shortage of topics to discuss there. Shortly after receiving an MG diagnosis, Deb began having new symptoms which were eventually diagnosed as MS. This was devastating news and Deb fought hard. She had many, many complications as well as other health issues and finally became homebound for the last several years. Our friendship deepened during the years, and we freely discussed the scariest outcomes that can come from such serious illness as MG and MS. We went through ups and downs. When I told her that I was going to do the reboot she was supportive and joked to me, “You try it first and if you live through it, maybe I'll give it a go.” She was in constant phone contact with me when I was in the hospital and after. The love was palpable. Unfortunately, when she went to seek her reboot, it was determined that her body was too weak, and she was not a candidate. She began having more frequent issues, some due to MG and some not. In August of 2012 she had brain surgery due to an abscess that had formed. She was left in ICU with paralysis, pain and was dependent on a vent from that point. She still, however, had her mind and her will, and made the decision to be removed from the vent and let nature take its course. As happy as I am that she is free, and no longer enduring the immense discomfort she suffered, I also feel a great sense of loss, knowing I will never hear her voice or see the IM screen pop up with her ID on it again. I am REALLY going to miss her. Rest well, Deb. Your job is now done. |
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#2 | ||
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Quote:
I'm sorry you have lost a friend. ![]() |
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#3 | ||
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Thank you for sharing your news.....
So sorry for the loss of a very special person....... |
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#4 | ||
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Grand Magnate
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I am so sorry that Deb has died and that she suffered so much. I'm sorry that you lost a friend. I do know much of what she went through early on. MG is harder on some people than others and she fought a tough fight. She was fierce, kind, funny and had a depth of knowledge and I greatly respected her. She will be missed.
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#5 | |||
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I'm sorry to hear this.
__________________
Celeste |
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#6 | ||
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Junior Member
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So sorry for your loss....sad day..
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#7 | |||
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I am so sorry to hear about your loss of a dear friend.
kathie |
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#8 | ||
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=4-eyes;
Im so very sorry for you loss and I can only imgaine how sad you must feel. Its funny I never thought you could meet someone online and that person becomes very important to you life until I signed up for this forum. I met a good friend on this forum and would be very heartbroken if I found out something happend to them. You have my deepest sympathy!! ![]() |
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#9 | ||
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Member
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So sorry to hear this. Deb messaged me when I first joined this forum and shared her knowledge with me.
Very sad news indeed. My thoughts are with her friends and family. xx
__________________
Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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#10 | ||
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Junior Member
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So sorry to hear of her passing. Be comforted knowing she is at rest. Blessings.
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