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Replies to 'When a Family Member Gets Sick'
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August 11, 2005, 9:59 pm PDT
 Quote From: bdbarry I am a faithful follower of Dr.Phil Show, I never thought I would ever, ever have to write to someone to help me with my own illness, which to this point I thought I was managing fairly well, until tonight....a quick history, became quite ill at the age of 43, after extensive diagnostic tests, I learned I have Muscular Dystrophy, I was working full time and loved it, I could drive anywhere and loved it, now 10 yrs. later at the age of 53, Muscular Dystrophy has taken over my life, I can't walk very far, although I am still able to shuffle about, heaven forbid I should trip...I can't get out of regular chair, without assistance, I can't get out of any low riding vehicles, without assistance, food doesn't impress me anymore, could take it or leave it, after all these years of coping with this disease, I have been having seizures for the last couple of months, I don't know I am having or had them until I can't remember something, it is getting more and more frequent..I am scared to death...I cry at a drop of a hat, don't even need the hat, I cry all the time, it seems for no reason, I get confused, my whole body has sensations that I have never felt before, burning up and down my arms into my fingers, not even really a burning sensation, just alot of pain, I am on alot of medication to try to control the seizures now....but for the life of me I can't seem to deal with this new part of my illness...I thought I handled my illness very well in the beginning, people have said they never knew I was ill, I hid it well...but as the disease progresses, I am getting more and more paranoid, of what's to come, God willing i will be around alot more years, if I can just get a grip on what life is handing me now. I have a wonderful husband, we just celebrated our 33rd wedding anniversary, we have a wonderful son Danny who is 32 yrs. old...and two adorable cats, the comedy relief team...my husband has been unwavering, he has been through it all with me, through think and thin, I knew I made the right choice when I married him and we said it would be forever, cause it has and will be, my son has been another rock in my life, as his mother I can do no wrong, according to him, he is my precious gem....I'm so sorry if i have rambled on, but it seems I have found my niche, I guess I just needed to vent, i really, really appreciate anyone who reads this. Hopefully life won't throw anything more my way for a while, however a grandchild would be nice..Thanks so much for taking the time to read my mail I feel a little better warmest regards from Windsor, Ontario, Canada Dale aka bdbarry I know what you are going thru. i am losing my sight and my hearing and I have a heart condition. my husband is my tower of strenghth and gives me so much support also. we are so lucky to have them. when i first started losing everything as I had worked for 25 yrs in restaurants I went for counsiling to deal with it all. it helped me and also praying to God. You know he listens also and answers our prayers if we just learn to listens. Now with everything else I have deal with i have headaches that are worse than migraines that I have have everyday and the dr. is trying to find the right medication and dosage to control them. I make it day by day. I still do just about everything but work my job as I need my eyes and ears to do that. But I know you can get thru this also. you have a greeat support system there with your husband. you can do it. I have plenty of faith in you and i know that you can get thru this as it is just a shock right now. once you decide you its ok and you are going to live your life to the fullest and like you want and like you always do, don't let it beat you. some days might be a bad sure. I have them everyday with my headaches but i keep going. I don't let it get me down. I have things to do. I know you will come thru this just fine and be able to handle it as God will be with you. ask god to be with you and guide you during all these tough times and trials. Many blessings to you and yours, have faith, I know you can do it. I have faith in you and i know you can get thru it. 2nephi |
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November 26, 2005, 10:03 pm PST
Quote From: bdbarry I am a faithful follower of Dr.Phil Show, I never thought I would ever, ever have to write to someone to help me with my own illness, which to this point I thought I was managing fairly well, until tonight....a quick history, became quite ill at the age of 43, after extensive diagnostic tests, I learned I have Muscular Dystrophy, I was working full time and loved it, I could drive anywhere and loved it, now 10 yrs. later at the age of 53, Muscular Dystrophy has taken over my life, I can't walk very far, although I am still able to shuffle about, heaven forbid I should trip...I can't get out of regular chair, without assistance, I can't get out of any low riding vehicles, without assistance, food doesn't impress me anymore, could take it or leave it, after all these years of coping with this disease, I have been having seizures for the last couple of months, I don't know I am having or had them until I can't remember something, it is getting more and more frequent..I am scared to death...I cry at a drop of a hat, don't even need the hat, I cry all the time, it seems for no reason, I get confused, my whole body has sensations that I have never felt before, burning up and down my arms into my fingers, not even really a burning sensation, just alot of pain, I am on alot of medication to try to control the seizures now....but for the life of me I can't seem to deal with this new part of my illness...I thought I handled my illness very well in the beginning, people have said they never knew I was ill, I hid it well...but as the disease progresses, I am getting more and more paranoid, of what's to come, God willing i will be around alot more years, if I can just get a grip on what life is handing me now. I have a wonderful husband, we just celebrated our 33rd wedding anniversary, we have a wonderful son Danny who is 32 yrs. old...and two adorable cats, the comedy relief team...my husband has been unwavering, he has been through it all with me, through think and thin, I knew I made the right choice when I married him and we said it would be forever, cause it has and will be, my son has been another rock in my life, as his mother I can do no wrong, according to him, he is my precious gem....I'm so sorry if i have rambled on, but it seems I have found my niche, I guess I just needed to vent, i really, really appreciate anyone who reads this. Hopefully life won't throw anything more my way for a while, however a grandchild would be nice..Thanks so much for taking the time to read my mail I feel a little better warmest regards from Windsor, Ontario, Canada Dale aka bdbarry The following is a website for bee sting therapy. It sounds scary, but if it works and is similar to getting a shot, why not give it a try. I have heard raves about it.
I hope it helps.
http://health.discovery.com/centers/althealth/beetherapy/
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July 12, 2006, 3:55 pm PDT
Quote From: bdbarry I am a faithful follower of Dr.Phil Show, I never thought I would ever, ever have to write to someone to help me with my own illness, which to this point I thought I was managing fairly well, until tonight....a quick history, became quite ill at the age of 43, after extensive diagnostic tests, I learned I have Muscular Dystrophy, I was working full time and loved it, I could drive anywhere and loved it, now 10 yrs. later at the age of 53, Muscular Dystrophy has taken over my life, I can't walk very far, although I am still able to shuffle about, heaven forbid I should trip...I can't get out of regular chair, without assistance, I can't get out of any low riding vehicles, without assistance, food doesn't impress me anymore, could take it or leave it, after all these years of coping with this disease, I have been having seizures for the last couple of months, I don't know I am having or had them until I can't remember something, it is getting more and more frequent..I am scared to death...I cry at a drop of a hat, don't even need the hat, I cry all the time, it seems for no reason, I get confused, my whole body has sensations that I have never felt before, burning up and down my arms into my fingers, not even really a burning sensation, just alot of pain, I am on alot of medication to try to control the seizures now....but for the life of me I can't seem to deal with this new part of my illness...I thought I handled my illness very well in the beginning, people have said they never knew I was ill, I hid it well...but as the disease progresses, I am getting more and more paranoid, of what's to come, God willing i will be around alot more years, if I can just get a grip on what life is handing me now. I have a wonderful husband, we just celebrated our 33rd wedding anniversary, we have a wonderful son Danny who is 32 yrs. old...and two adorable cats, the comedy relief team...my husband has been unwavering, he has been through it all with me, through think and thin, I knew I made the right choice when I married him and we said it would be forever, cause it has and will be, my son has been another rock in my life, as his mother I can do no wrong, according to him, he is my precious gem....I'm so sorry if i have rambled on, but it seems I have found my niche, I guess I just needed to vent, i really, really appreciate anyone who reads this. Hopefully life won't throw anything more my way for a while, however a grandchild would be nice..Thanks so much for taking the time to read my mail I feel a little better warmest regards from Windsor, Ontario, Canada Dale aka bdbarry Hi, I read your message about being diagnosed with MD. I have had Muscular Dystrophy my whole life, I was diagnosed as a baby with Conginital Muscular Dystrophy, I think I was about 6 months old (my family had to travel from Florida to New York for diagnosis.) I turned 19 years old this May. All we really know about my form of MD is that it is non-progressive. I haven't been able to walk since I was about two years old, and that was with leg braces and a tiny walker. I used a manual wheelchair when I was younger, but my arm strength deteriorated and I got my first electric wheelchair at age six. I currently use an electric wheelchair that I got about two years ago. I graduated with honors from high school in 2005 and started at Florida State University. Last summer, however, I became very ill with pneumonia and had to be put on a respirator, once they removed the respirator and I could breathe on my own my swallowing was so weak that I couldn't eat, and I had to have surgeory for a feeding tube to be put in. Once I had been put under the anesthesia, they were unable to intibate me to keep my airway safe during the operation, so they had to do an emergency tracheostomy. I nearly died. One of the drs. even told my mom to prepare the family for the worst. Afterwords, when I had begun to recover the Drs. insisted that I needed the trach, and I had it for 8 months. It was an endless hell, I was unable to talk and I had to be suctioned several times an hour. Worse than that, I couldn't go back to college, and, I've always loved school, so that really hurt. Fortunately, this summer I was able to do a couple of online classes through the community college as a transient student. Finally, after months of intense swallow therapy, I was able to speak by covering the trach with my finger, but, it was still difficult. Then, finally, after intense negotiation with my drs. I was able to remove the trach for good! Since then I've been doing great (with the exception of a broken leg last month when I fell out of my hoyer lift) and am planning on going back to school in the fall. I don't mean to ramble on and on, I just wanted to share my story with you and let you know that while our types of MD may vary, I know some of what you are going through, especially with the pain issues (I have a lot of chronic pain in my legs and back) and that we probably have a lot in common. If you would like to talk to me you can email me at caitlin.inman@gmail.com.
Good luck and keep your chin up! |
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