bebes
 |
| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 09/10/2010 07:58 AM |
| Last Online | 12/20/2012 10:25 AM |
| Gender: | Male |
| Birthdate: | 05/22/1955 |
| State: | South Carolina |
| Occupation: | Disabled |
| A little about me: | I am 55 years old and my wife and I have 6 grown children, five of whom are now married. We have 2 grandchildren. I became very ill in 1991 a few months after my youngest son was born. I was mis-diagnosed many times until I finally saw a Lyme specialist in 2003. His clinical diagnosis was upheld by thorough lab testing. (The basic test had been run on me any number of times and had always come back with a false negative.) In the fall of 2006 I started having symptoms of MG: droopy eyes and blurry/double vision. By the spring of the next year it had progressed and by the time I saw the MG specialist he was so alarmed that he admitted me immediately to the hospital to begin IVIG treatments. After a slow improvement through CellCept and Mestinon I have since had a few MG events. My new normal is good mobility and I can even drive when my vision is clear, but I tire so quickly I rarely leave the home. If I get involved in a conversation my tongue and vocal chords will be exhausted within 3-5 minutes and I will start to slur and sometimes completely lose the ability to speak. My lack of activity would probably cause me to be hugely overweight if I did not go through periods where my swallowing problems limit my ability to eat. Sometimes I have to go on a completely liquid diet. But the worst part of it all is the pain from the Lyme and the amazingly quick exhaustion. I frequently wonder "how can a body get to the point of having to gasp for a breath by just taking a shower or walking to the mailbox"? Nevertheless I try to take care of myself even though my sweet wife would dearly love to ease my burdens but there is little she or anyone can do. Our children are helpful and try very hard to keep grandpa involved and our church friends and our neighbors are all very understanding and helpful when needed. In many ways I live a wonderful life and I am blessed that we live in a little cottage in the woods. God's wonders are right outside our doors and windows and walking paths are there too for the days when I feel I can go out. I hope that my involvement in this community can help me keep a good perspective on life and my illness. And I hope that my experiences will help others to deal with theirs. |
My Awareness Ribbons
| "After suffering since 1991 with an illness that was mis-diagnosed many times I was finally properly diagnosed with Lyme in 2003. Treatment arrested the progression but not the disease. It was probably the main contributing factor to contracting MG. I want everyone to be aware of how devastating this disease can be." | |
| Awareness Ribbons | |
| Add as Friend |
| Private Message |
| Give a Hug |
My Hugs
Give bebes...
My Diary
Bebesday
Today in the life of a Lymie Myasthenic
Today in the life of a Lymie Myasthenic
| Title | Date | Views | Comments |
| November 13, 2012 | 11/13/2012 | 135 | 0 |
| November 5, 2012 | 11/05/2012 | 75 | 0 |
| October 21, 2012 | 10/21/2012 | 59 | 0 |
| October 13, 2012 | 10/13/2012 | 86 | 0 |
| October 7, 2012 | 10/07/2012 | 112 | 1 |
| September 25, 2012 | 09/26/2012 | 95 | 1 |
| September 18, 2012 | 09/18/2012 | 76 | 0 |
| September 12, 2012 | 09/12/2012 | 85 | 0 |
| September 8, 2012 | 09/08/2012 | 75 | 0 |
| August 30, 2012 | 08/30/2012 | 119 | 1 |
My Health Topics Contributions
I started discussions in the following health topics:
progression of MG.
progression of MG.
My Photos
bebes's photos are private
My Support Groups
My Friends
My Recent Posts
| Newly Diagnosed with MG -- Con... | 10/28/2012 | ||
| MG | 10/23/2012 | ||
| Recovery after MG Crisis | 10/13/2012 | ||
| CT Scan of Thymus, Reaction to... | 10/13/2012 | ||
| Recovery after MG Crisis | 10/13/2012 | ||
| New Here with so many question... | 10/13/2012 | ||
| New Leader | 09/30/2012 | ||
| MG crisis (breathing issues) | 09/30/2012 | ||
| MG..Sitting and laying can get... | 09/30/2012 | ||
| Fatigue, Sleep and MG | 09/17/2012 | ||
| dementia and myasthenia gravis | 09/13/2012 | ||
| MG crisis (breathing issues) | 09/12/2012 | ||
| dementia and myasthenia gravis | 09/12/2012 | ||
| MG crisis (breathing issues) | 09/08/2012 | ||
| Origins of Myasthenia Gravis? ... | 09/02/2012 | ||
My Articles
No articles published