Audrey, there is a website called Living Whole With Chronic Pain Network that I was directed to by my friend Ellen S. There are many topics to get involved in and I have recently met some of the girls who seem so compasionate and understanding. They all seem to be Christians and it's a wonderful place to be. I hope you will join us all. You'll be glad you found us. Barbara
Dear Audrey, I really feel for you and your situation. Remember though that there's a lot of other people worse off than you or I out there. We have to be tough and stick together praying for each other that God will keep us strong. Always focus on Him no matter what happens with your body....lean on Him. He is in control of everything and I don't believe He will give us more than we can handle. There are so many things to be thankful for in this world. I've found that when I pray for others I forget about myself and my problems. I will keep you in my prayers. I live in the country with my husband, no kids but we have 5 horses, 2 toy poodles and several barn cats and kittens. We recently lost 2 of our beloved dogs, a cocker with liver & kidney failure and an australian shepherd (14 yrs. old) with a stroke plus 2 horses, one of old age (27) and the other to a stroke (20 yrs. old) . It's been so heartbreaking to lose your pets. It's pretty isolated here unless we go to town. I was born in southern Calif. so the winters in Missouri are very cold to me and I will never get used to the ice and snow and the changeable weather here but it's a pretty place and much cheaper to live here. I can't wait for spring, my favorite time of year. I have a small orchard of peaches, apples, a cherry tree for the first time and I want a garden again so my husband is plowing it up for me. I'm worried though as I may have trouble with bending (I have a lower back prob.) and my legs have a new problem with pain. I'm going to see a Dr. about that ! I love mowing the yard and growing veg.'s. Also I love to cook. Do you like to cook ? Well I'm so glad you answered me and keep in touch when you can, Blessings to you, Barbara
Hi Audrey ! How are you doing now ? I'm really slow in answering people....life gets in the way I guess. I did have 10 Botox injections in Sept. all in the same session and within 24 hours I had a bad reaction to them as in the worst case of stomach flu ever !! I will NEVER have Botox again. I was ill for 3 days and ached all over. I never had a reaction 6 yrs. ago before my neck surgery so I just thought they wouldn't work again so I went for it. Also I had difficulty in swallowing and still have that today sometimes. Also I'm having trouble with the occipital nerve which is no fun. I hope you are doing better. Blessings, Barbara
Audrey, I forgot to mention that I had gone through 14 different doctors who mis diagnosed me before I finally decided to go to Mayo Clinic in Rochester, MN. and there is where I found the help I needed. That's definitely the place to go. Barbara Brooks
Hello Audrey, so sorry to be so late in discovering your message to me. I hadn't gotten any notice on my e-mails that you had sent me a message and I just ran across it. Anyway, I am so sorry to hear about your reactions to Botox. I guess some people have different reactions, but I never did get any side effects or difficulty in swallowing. I am scheduled to have more injections Aug. 19th and my neurologist assures me that he will not inject near my esophagus. I just hope for good results. I do have some hypertension and the only med. I have taken for 1 1/2 yrs. now is Lisinopril which has lowered my blood pressure. I hope you can find some relief of your spasms. Barbara Brooks in Missouri
I have sen Dr. James Redshaw in Boise ID. since May, 2007. He has gave me 2(two) injections of Botox at 3 month intervals. After the second dosage of 200mg being injected, I had a siezure type experience within 30 minutes of the injection. I have since found out I have heaart problems and had a stent put in on May 2,2008. However since the reactions to the Botox I am unable to swallow on left side of throat, as well as have had no releif for the spasms in the cervical area, and suffer from chronic pain, fatigue, depression, and am unable to walk or exercise due to the slightest movement and even touch will trigger spasms to increase in intensity. I take Kolonopin 3-4 times a day, as well as Darvon for the pain. Other meds I take are Lexapro,Lipitor, Plavix, Premarin, and 325 mg. aspirin every day. I have gotten some releif from accupuncture and do have it weekly to help with the pain management. I am
frustrated with getting no answers after 2 years I am in worse shape than I was before starting the treatments with Botox and meds. I have twitching in my eyes, severe spasming, and chronic pain. Is there any relief or help you can give me? I see a PA-Ruth Campbell here in Salmon regularly, but she has no education or knowledge of the Dystonia or treatments for it. I suffer every day with this and it has caused deep depresion, lack of sleep, inability to enjoy life in general and even simple tasks cause spasms. I would be interested in any suggestions or help you can give me. I live in a small community and am 350 miles from Boise and the cost of trips and uncovered medical expenses are tremendous only adding to my stress level, which only increases the effects of the Dystonia in every day life. I have been trying to get Disability Social Security for over 2(two) years, and am currently waiting for a hearing with an ADL Judge (I have started the procedure on the hearing 1(one) year ago, and still have not heard anything on when it may be, I do have a lawyer in Idaho Falls, Id.- Greg Maeser who is handling the case with this. But I am desperate at this point. Hope you can help me, even just with a few words and maybe how best to learn to live with this. Sincerely, Audrey Aldous, 5 Aldous Drive, Salmon, ID 83467. Thank you for your response.
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frustrated with getting no answers after 2 years I am in worse shape than I was before starting the treatments with Botox and meds. I have twitching in my eyes, severe spasming, and chronic pain. Is there any relief or help you can give me? I see a PA-Ruth Campbell here in Salmon regularly, but she has no education or knowledge of the Dystonia or treatments for it. I suffer every day with this and it has caused deep depresion, lack of sleep, inability to enjoy life in general and even simple tasks cause spasms. I would be interested in any suggestions or help you can give me. I live in a small community and am 350 miles from Boise and the cost of trips and uncovered medical expenses are tremendous only adding to my stress level, which only increases the effects of the Dystonia in every day life. I have been trying to get Disability Social Security for over 2(two) years, and am currently waiting for a hearing with an ADL Judge (I have started the procedure on the hearing 1(one) year ago, and still have not heard anything on when it may be, I do have a lawyer in Idaho Falls, Id.- Greg Maeser who is handling the case with this. But I am desperate at this point. Hope you can help me, even just with a few words and maybe how best to learn to live with this. Sincerely, Audrey Aldous, 5 Aldous Drive, Salmon, ID 83467. Thank you for your response.
beka
www.care4dystonia.org