shelby

I had to have that wrist thing on too. It was a part of the PRC clinic that they have up there. We called it the house arrest bracelet because we got weird looks when we wore it. When I did mine I got odd results too. Like lots of late night activity when I was sleeping. I was told that was not normal and that I should look into it. So I am not sure if it is just these two cases, but it seems like we are getting a pattern going here. Shelby

I don't drink caffeine at all really. I was told not only was it a bad thing for my migraines, but makes you have to go to the restrooom more frequently. My mom and dad have cut back too, using a half and half decaff/caff coffee that Foldgers makes. I never got hooked on coffee so that wasn't a prob for me. I do however like the chocolate and the soda. I drink Caffeine Free Pepsi and I don't find that it tastes a whole lot different. As for the chocolate I just eat it in moderation. One chocolate thing a day if that. That way I don't have to worry about the caffeine thing. There are so many more things that have caffeine that people are not aware of though. I have a list of them and I will try to get some on here so you can have that information. Shelby

I went to Mayo Clinic three week Pain Rehab Clinic for my Fibromyalgia and the NCS. I think that I got a good deal with that because they taught me how to do excersizes to fit my condition. I also had occupational therapy once or twice a day to teach me how to do things around the house to help the pain and to help with the NCS symptoms. The biggest thing that they teach there is moderation. We walked in the morning for 10 min. As fast as you wanted to, or as slow as you wanted too. And if you didn't feel well then you just took a break and tried later. I also did some muscle excersizes, stretches and aerobic exersizes. The aerobic was to bike starting wtih 4 min a day and increasing as you went. I thought it was good because I used a recumbent bike that adjusted at the seat back so I didn't have to sit up straight. It still gets the muscles moving though. I bought my own seat adjusting recumbent when I got home and everything is working out great. Shelby

Hey this was a great idea. I am adding my own #10. I feel that knowing what doctor worked for you might help others. I had a heck of a time finding a doctor that did anything for me. Shelby 1. Name: Shelby Johnston 2. Age: 23 3. Dx: NCS, NMH, Fibromyalgia, 4. Age at dx.: 17 5. Where you live: Laurens, Iowa (small town 45 minutes from the Okoboji Area) 6. Symptoms at worst: I am homebound when my symptoms are at there worst. I get so weak I have to be carried to bed. My head aches. I get extremely hot. Naueseated. Dizzy. I have palpatation of the heart. I go blank. I can' t think of anything. I get spacy and my skin gets extremely pale. I have had times where I will be sitting and I go to stand and I lose my hearing. I have also had problems like that where I lose my vision. 7. Symptoms at best: I still have headaches and body aches occasionally. My heart does the palpatating things, but not as bad. 8. Medications/treatments, etc. that didn't work for you: effexor, vitamins of any kind, when I was taking a small dose of florinef without the midodrine it didn't work. Then they took me off the florinef and put me on midodrine, and that didn't work either. 9. Medications/treatments, etc., that do work for you: Midodrine and Florinef at same time, Wellbutrin (for depression) Methylphendiate (for concintration in school) 10. Dr. who you found most helpful: I found the Mayo Clinic in Rochester the most helpful. Dr Fealey in the Neuro. Department was a good doctor. I also found that the Fibromyagia clinic there was a good clinic.

Nina and All, So glad that thing are getting done on the way to a finished project. I think that this will open eyes to Dysautonomia. I am a big beliver in getting the word out. I am sure that through this project we will be helping others. I am total opposite of you two on the small wrist thing so I would think that making them adjustable would be the best idea too. Glad to see this project getting on its way. Shelby

Hi, I went up to Rochester, MN Mayo clinic too, but I saw Dr. Fealey instead of Dr. Low. I haven't felt better than I have in the past couple of months. He started me on new meds and after they sank in I was feeling much better. I would suggest it. SHelby

When thinking about colors for the bracelets you may want to consider colors already used for ribbons/symbols. I found an article that states what color different organizations use. Silver: children with disabilities, captaign for the brain. Red: AIDS/HIV, substaence abuse, epidermolysis bullosa Multicolor, Puzzle Piece Design: autism Gray: Diabetes Pink: Breast Cancer, Birth Parents Yellow: Military Support, POW/MIA, Suicide Prevention, Adoptive Parents Gold: Childhood Cancer Purple: Abuse and Violence, Religous Tolerance, Animal Abuse, Fallen Police and Fire Fighters, Victims of 911, Pancreatic Cancer, Alzheimer's Disease Light Blue: Prostate Cancer, Trisomy 12 Sclerodermia White: Innocence, Victoms of Terrorism, Right to Life, Diabetes Black: Mourning, Melanoma Orange: Hunger, Cultural Diversity Teal: Ovarian Cancer Green: Enviromental, Organ Donation, Missing Children, Leukemia, Safe Driving Rainbow: Gay Pride Clear wtih Gold Trim: Lung Cancer Ivory Lace: Osteoporosis Brown: Anti Tobacco Red White and Blue: Patriotism Just to help. Hope it does Shelby

Yeah, I am going on 5 years without drivers license, you have to be free from having a spell for how many months your state says necessary to get license back. You have to fill out reports at intervals. Mine will come up the 4th of November for my six months, as it is stated in Iowa Law. They treat it like epilepsy or something similar where you lose conciousness. Hope you get something worked out. Shelby

Would recoment Dr. Fealey at Mayo in MN if can't get into Low. He has been working with autonomic probs for about 20 years and is very intellegent. Shelby

Hi Guys, I hope that you are all as excited as we are about starting this as we are. I am not sure of what to have on it though. I am sure it should be short and sweet, when people read your bracelet you dont want to be bending over backwards to let them read it lol. Will try to think of ideas myself. Shelby