shelby

Hi Heather... Sorry to hear about your bad news. I am not the expert about this subject, but seven years ago I experianced my own miscarriage. I dont know if it had anything to do with my condition (let me just state I have NCS). It is a hard thing to go through and my heart goes out to you. I hope someone offers you a better answer, but I am just not sure that there is an answer of why these things happen. My prayers and thoughts are with you during this time and hopes that all gets better. Shelby

I get bad migraines and I noticed that Excedrine Migraine helps the eyes straining and the headaches...something to try and if it fails something to keep your medicine cabinet full.

I got a book called the Ultimate Smoothie book when I got my smoothie maker. I love it and it gives great recipies. They sell them at amazon.com and I would get the used one, they are just as good, but they dont cost as much.

Hi!! I acutally do work and am disabled. The group is right when they say Voc Rehab helps out, but I got my job on my own. I did not disclose my medical information til after the interview and after they hired me, which I dont think was either wrong or right by any means. I work at a hospital part time and they are so flexable with me and my illness. I think it is the best place to work, they understand my condition and the ER is right there when I need it lol. Hope this helps. If you need help interviewing or anything feel free to ask. I got my first job off my first interview, so I dont know if they were desperate or I was that good lol. Shelby

Thanks all for the great responses... You all have a lot of good things to say. Today I asked out a guy from work who knows I have a fainting thing cause he has seen it, said maybe sometime, but I almost passed out from anxiety asking him out. jbrian...used to acutally live in DeWitt close to the Quad Cities, but now live on the other side of Iowa. Looking to get to know more people so if you want to email me at shelbyjohnston@hotmail.com and maybe we can chat. That goes for anyone though. I understand that it is great to post here, but sometimes a one on one conversation is more effective so I look forward to any new communication. Have a great day all!! Shelby

Okay, so I posted this kinda question on my facebook forum, but thought I would throw this out at you guys as well.... I have a question for all of you about dating and dysautonomia. A little history on me quick...I have had this condition for ten years and for six of the ten years I have been with the same person, we were engaged and I just ended the engagement about 4 months ago, and now I am starting the dating thing again, which by the way I hate. So how do you explain to a possible date that you have this condition? I dont like I should have to or want to hide this because it is a big part of who I am and how I have become the person I am today. I feel like I have to give a disclaimer to people who want to date me. lol. I dont go to bars or clubs and dont know where to go about meeting someone. So if anyone has a suggestion for that I would appreciate that as well. So this might have been the stupidest thing to waste peoples time with, but I am hoping for some help from people who are dating or are in relationships to see how you are gong about this issue. Thanks for taking the time to listen... Shelby

I know that here where I live we have a Home Health Service that does things like having a nurse come in as much as they are needed. They can also do home maintainance helping out with laundry, cooking, cleaning and other things. Ours is connected with the hospital, so maybe you can call your local hospital and get some information from them. You might also be able to call your local department of human services and ask them how to go about getting help for you. Another idea would be assisted living if you qualify for that (I am not sure at what level your illness is at, but they can help a lot). Hope some of this helps. And I hope that things get better. Shelby

Has anyone in here had a bout with kidney stones after their dx? I just got out of the hospital for my second run at them. I wonder if it is something common with things going on here, or if it is jus another fun thing my body likes to do. Thanks, Shelby

There is a new medication called Topamax that my doctor put me on for migraines and for mood swings. Helped both, however one of the side effects are kidney stones, and yeah got one of those too. It was a good medication and helped and I was upset when they took me off of it because of the stone because it really helped the migraines alot. Shelby

I have the opposite story to the Depo shot. I started taking it because they thought that my symptoms had something to do with my period. It didn't, but they put me on the shot because it stopped my period. I haven't had one since 2001 and dont miss it a day. Some people go on it and have the same problems as Becky though. You either do better or you do worse on it. It is like any medication it has to do with your body's make up and whether something works positively or negatively for you. Shelby

I am on Childhood Disability and SSI right now because I am under a PASS plan to get me though college. I have a job and work part time. When I am done with school I will loose the SSI and I will be on SSDI still and I can still work, but I have to make under a certain amount of money I think that it is right now a little over $800. Shelby

Everyone here is right. TMJ surgery is not always a corrective thing. I would know, I have had two. The other things I have tried that didn't work for me but might for someone else is jaw therapy, of course the mouth piece (more for people who grind in the night I was told), pain meds, when I had braces they put this metal thing in to help that, chiropractors, and the surgery. It is better than it was mind you, but it isn't fully healed and when they do the surgery they reset your jaw and I haven't felt the same in that area since. I even went to Mayo to fix it, but they told me that they were inclined to go in a third time because of the touchy nerves in the area where they were doing the surgery. So it is good enough for now. Hope this helps. Shelby

Amy Sorry to hear about your hard times. I swear that SSDI is hard to get no matter what. I live in NW Iowa and I was denied twice then had to go to court to argue it out there. My grandpa had a friend who was friends with Tom Harkin and he helped a little by sending a letter to the court judge when we got that far. It is so hard to get help from those lovely political people sometimes. I hope all goes well. Shelby

Wonder if any of you have had this. I went to a wedding a month ago, and they had meat there that was under these red lights. They just made me so dizzy and, well it was the craziest thing. Hit me blindsided. So I thought I was going crazy and then I was at the movie theater, and I have a step problem anyhow since I got sick. I was going down this flight of stairs with red leading lights, happened again. Had to sit down and then have someone lead me to the exit. Has anyone else had something like this or am I now truly going crazy? Thanks for the help. Shelby

I feel your pain. I got sick at 17, two weeks before my senior year of high school. Lost everything, my friends who thought I was crazy, my fiance, then another one. Thought I would be stuck in the suck rut forever. I finally had a break down which lead me to a psych. and then to a doctor who shed light on my situation. I urge you not to let your depression get that bad. It is hard, but for me that was 7 years ago, can't believe that when I think about it. I am back in college, met a man who loves me for me, he had a harder time when I got better then when I was sick. There are men out there who dispite all of this will look past it all to find who you truly are. I know, I had to go through all the bad ones to find this one. Don't give up. My psych said to me once "if people who are going through what you when through aren't going crazy, there is something wrong". It is just nice finding the right counselor to talk to. Sometimes talking to friends just doesn't help, and sometimes it is the best thing. Hope things get better soon. Shelby

About the neckties!! I found my neck ties, the same thing you guys are ordering, at Wal-Mart. Not sure if they all carry them, but I am sure if you ask you might be amazed at what Wal-Mart can carry or can get. They were like 3.97 a piece and you didn't have to pay S&H. I also want to give the flea market in Arizona a thumbs up on the fact that they sell the neckties cooled off and ready to go when you are there so you can be cooled off from the heat. Good idea they had. Sure it makes them some money. Shelby

I wondered this too. My mom had the same thing when she was in her late twenties, but never got diagnoised and was told to get over it and get on with life. That sounds familiar. My grandma had a bout with it when she was in her late teens early twenties but she was told the same thing, so when I got it she didn't think of saying anything, that is until she passed out during Christmas dinner and promptly said "oh I used to do this all the time". Yeah thanks for telling me now. She also stated that her mother had a problem like this when she was the same age, but they attributed it to the weather and looked at her like she was a weak individual. So that is about all I know on our part of the family. Makes me uneasy about having kids, but now I know what the prob is, I can make sure they dont have to go through the stuff my great-grandmother, grandmother, mother and myself had to. Shelby

IT is 2:32 here and I understand how you are feeling. I am just on this night and day different schedual because it is too hot. I had posted on this topic before in here about getting a CD with sounds of relaxation, that helped me. NOt sure if it will help anyone else. I don't know where to pick one up at though. I tried to go in and find out where I can order the one that I have, and found nothing. I was willing to try to copy and send it to you fellow insomniacs, but I don't know if it would benifit you. If anyone wants it, it isn't copyrighted, I can send it to you. I also have this sleep kit I will see what it holds and get back tomorrow. Shelby

I guess that mine is the most bland of everyone. Shelby is my name. No nickname, no numbers, just my name.

Hi Diana~ I think that the reason that we don't have a lot on recovery is that there isn't a full recovery in this case. I know of a lot of people who have gotten better, but still have their bad days. I am one of them. A year ago I just started to feel better after getting on the right drug combination at Mayo in Rochester. I went back to school full time and finished one complete year without having to quit. I got my license back and knock on wood haven't had any fainting episodes in over a year and two months. I had a fast track class (one class, six days, eight hours a day) this past week and had problems around day three. I just didn't get enough sleep going to class for eight hours and doing three to four hours of homework a night. I think that I just wore myself out and I am paying for it now. I have been resting for the past week to recooperate. I consider myself better but not cured. I still have problems from time to time, but I am way better off then I was a year ago. Hope this gives you some hope in the future. Shelby

I have the same problem that you do. My symptoms change all the time. I get headaches and then a stomach fit and then I get dizzy. I don't know how to help you on this one. I know I get so sick when I go from one temp to another. I go outside to the 90 degree weather then I come in to the air and then I get very sick. Or I go from a shopping store to the outside to my car and have to sit there for a while before I can drive. It sometimes doesn't work to sit though because there is always some guy or gal wanting your parking spot. So I drive to a place I know I can relax for a while. I hope this helps. IF not at least you don't feel alone. Shelby

When I went to Vegas a few years back I wanted to go on the rides and I did, even though my symptoms were no near controlled. I was just at Disneyland a month or so ago and here is what I suggest. Start small and see how you handle the smaller rides. Do not feel bad if you take a break or get dizzy when you get off, just make sure you get off with someone's help. The most important thing is to take it slow and enjoy yourself. Shelby

Well my experiance with BC has been a good one. I started when I was 16 for endometriosis reasons. A few years ago I was diagnoised with Fibromyalgia and I would be in so much pain when I had my period that I would have to lay in my bed on a heat blanket for a while. My dr recommended the shot so it would stop my periods. There are many positive and negitve side effects for the shot. I have been on it for about 3 years and have experianced none of these. I am planning on starting a family sometime in the future and the only thing they reccomoned is to go on the pill and not just go off the shot. It gives your body time to get back on schedual. Hope you have the answer you were seeking. Shelby

Jessica, So sorry about the horrible ordeal you have been going through. I can't imagine what the past week has been like for you. Thoughts and prayers are with your family. Shelby

Thank you so much for all that information and research you did for me. I really appreciate it. I just got back from vacation and just got back on to see your post. I really appreciate the fact that we are always looking out and helping one another. Makes life a little easier when you can get help from your friends. Shelby