purplefocus

I am so sorry Sue is going thru this. She will be in my prayers. Hopefully this will be over soon and she can just call it some type of "spell". I will include all of you in my prayers too. Stay positive and remind her that we are all thinking of her and praying for her. Please keep us informed. Paige

April, I hope you do get to feeling lots better soon. As far as work, I don't know what to tell you about that. I was forced to quit but I know alot of people continue working. How about watching a good sappy movie and really get into it so you can focus your mind off everything else for awhile. Paige

Susan, I don't have any suggestion for you about knowing a new doctor unless you want to commute to Alabama. But my advice is for you to find a new doctor immediately. With a doctor that doesn't listen to you about your symptoms can cause you harm. I have seem this first hand as a nurse working with uncaring doctors. Too many doctors are over worked (trying to get those extra patients in the office ) to have time to listen. There is some very wonderful doctors, please try to find one before this one fails you. Paige

Pamela, Hi. I have to tell you I admire you, being able to take care of a 5 month old baby and several other children. I know how exhausting that is. My son is almost 3, I can at least sit him down in front of Barney and give him a cup of dry cereal on my bad days. Of course there is reason I have to get up with him but with an infant there is so much more. If you have days like I do where you don't know how you are going to find the energy to walk across the room or brain fog so bad such as the day I gave my son the glass of extra strong ice tea instead of his sippy cup of juice....(can you imagine a wild little monkey)..........but what do we do??? the best we can and laugh at the rest. On my bad days I just spend my energy on making sure I keep my son safe. He may pull out every toy he owns, I don't stop him I just sit and watch. Curious to what the ages of your other children. Glad you found this site and I hope it helps you as much as it has me. Paige

Melanie, Just hang in there. I know waiting is very hard but just remember you are not alone. You have all of us to support you. Paige

Deanna and Dawn, How long did it take for you to get approved ? Paige

Sue, Thank you so much. See how the people are on here ........ Paige

Migraine, I do want to hear how bad your days are, I want to know how bad everybody's days are. It makes me feel more normal (in an odd kind of way). Like I am just like everyone else (at least on here). I can have my melt downs just like everyone else, then pick myself up once my body lets me. Really it does help my mentality to see that you guys have these melt downs too and that they are only temporary and we can go on the next day or even the next hours. Paige

I read the excerpt you posted, I want more. Being able to see yourself in a book is always engaging. What I read kept me interested and wanting to find out more of what is going on. I think you are on to something great. I write poetry. I have had a few posted in different places. I think it is a natural therapy. Maybe one day I can share some of my favorites with ya. Paige

Hey Katherine, I am so sorry you are going thru this. I understand about your 18 month old, I have a child 2 1/2 and regardless of how we feel they always have a ton of energy. About the feeling worse when you wake up. That is happening to me also. I feel like my health is just declining down and down. I really don't know how you are handling working. I admire that. I feel like I have ran a marathon if I just make it to the bathroom to brush my teeth. But like ya have told me on here this is only temporary. You are very strong Katherine and we know this is only temporary. Paige

You guys are so wonderful. Thanks for all the response to this post. After reading all these and seeing how many people had jobs with a connection to health fields. I can't help but think that some how we were exposed to something. Everyone has opinions and this is mine. Really guys thanks. Paige

Hey NIna, I came of Lexapro and whoa did I have problems................nonfunctionable was not the word, I am just glad my family is still alive . I start on my new med tuesday.............hopefully we will make it (my family). I haven't seen any difference in my weight gain, still have all these crazy cravings. Paige

Gayla, I'm not sure how you would do it, my husband suggest going to a book store and buy "Writers Handbook" that gives you thousands of listings for publishers and people to target. I tell you what though, tell me when and where and I will buy your first book. Hey, how about giving us a few "snippets" of it on here. Paige

Dawn and Everyone Else, Thank you for your advice. The pain does get horrible but I am starting to find the relief for it from Neurotin. I am doing better and have had a great weekend with my husband and kids. Once again if it wasn't for this site and being able to know I am not crazy that I really have these symptoms and feelings and it's not just in my head like so many say, I am so thankful for everyone in here. I did push myself yesterday to the point of passing out at the Putt Putt Golf Place but at least I made it to the car with my husband when I did. This illness is frustrating but I am gonna concentrate on not letting it control me. Ok enough rambling........THANKS YA for being so SUPPORTIVE. Paige

That is wonderful. I am not familiar with adderall, what exactly is it? Paige

Thanks everyone for all the encouragement. It really does help to talk to people that have the same thing going on. I am doing better, still have a little blues but nothing horrible right now. My husband is off the weekend, first one in months so I will be catered to. I don't know what I would do without this site. Thanks everybody. Paige

Of course I can sympathize with all of you. Fortunately I have a husband that takes my symptoms very serious and a 12 year old son that is very catering at times such as making sure I have my water with me, etc., my two year old son will even bring me his blankie when I am having a really bad time. But there are those people that think I just don't want to work any longer, and maybe I have a mental problem, yadayadayada. You know what I think would be great. To have a pamphlet like you see in doctors office about hypertension, diabetes, etc. If we had one about our illness and all the symptoms and how debilitating it is, words to make them understand chronic illness and words to make them know we don't want to be this way, and to be happy with us on our good days, and that we are not lazy..............we all want our old life back. Has anyone seen any type of pamphet like this or have any ideal how we can get one made. It would be great to just be able to pass it out to our family, friends, even nurses and doctors. What do ya think?

Susie, I am with you I want to know what to expect. I am in the process of the disability battle with social security. I will be anxious to hear also what anyone has to say. I do know people has gotten approved with problems so less debilitating than ours. Paige

Yesterday was a horrible day for me. It took every ounce of energy I had to just be able to get up out of bed let alone take care of my two year old. I usual find myself handling things well but yesterday it hit me with a ton of bricks. The pain, the syncope, the brain fog, and of course, losing the ability to work or drive .............was more than I could take, so the pity party I had made me think I was only a lump of clay sitting in a chair for no reason, I was thinking I was the biggest burden on my family and they would be better without me. I realized I was not in good shape so I called my doctors nurse and talked with her, her response was to go to the ER immediatly............well we know what happens when we go to the ER, let alone with a problem like that but because of my wonderful husband, he made me go, I tried to explain to him that I just needed sometype of nerve pill and I would be ok..............well we went to ER, they had someone talk to me, asked me if I wanted to be admitted, I said NO!!! so they gave me a paper with a number and told me to call tomorrow morning. Well here I am, still feeling blue but not as bad as yesterday. What is some of the ways you deal with the bad sad days. It doesn't happen all the time. Oh yea, I was on Lexapro but my doctor took me off of it and is gonna start me on another drug but he wanted me to wait 14 days. Sorry this was so long. Paige

Hey Carla, Hope you are doing great today. I do the coffee thing also. It really helps. About "MOUNTAIN DEW"..........the doctor that did my tilt table test ask me if I drank alot of mountain dew and of course I did to help give me energy. He told me I shouldn't drink it, he said that there was something in it that after about 30 minutes that actually it would make my symptoms worse. I did stop the mountain dew because of what he said but I never questioned it any futher. I still will have an occasional Dr. Pepper or Pepsi. Paige

Melanie, I understand wanting to know what has been going on with your body and I also understand wanting to have a magical pill. I know the most of us that are touched by dysautonomia are debilitated but just remember we are not being giving a life sentence of having "incurable cancer". Even though we suffer we will still be here to see the smile on our childrens faces. I understand the pity, have myself a pity party often but we do have to know that even with dysautonomia we can still stop and smell the roses. Paige

I am curious about everyones profession. I have noticed that numerous people that are affected with dysautonomia have worked in the health field. Correct me if I am wrong but it seems like I remember reading that this could come from being exposed to some kind of viral thing. I have been a nurse for 17 years and I am sure I was exposed to almost everything imaginable. I am just curious if anyone else thinks working in the health care field could be where we was exposed to something???? Or maybe I am just confused. By the way, I no longer work, my wonderful boss gave me the option of quitting or being fired due to all my absentence, I refused to be bullied by her and told her I was going to take a medical leave which I am on now so I can keep my insurance. I am currently in the process of getting on disability. My biggest problem is passing out 3 to 4 times a week and the fatigue. Paige

Ok Sue, Calm down, this is actually what happen............Little seamstress mice came into your closet over the winter months and resewed (<---- is this a word) your summer clothes to make them smaller because these little mice are EVIL!!! As far as the stretched skin, have your significant other to apply heavily, oil and lotion to these areas, might not help but it will be fun. Ok I was trying to make you smile. I am in the same boat as you. I am off the Lexapro and have been for 6 days now but nothing has change yet. We will get thru this and we will get our bodies back. Hang in there and focus on good stuff and not the bad. So what if we have extra cushion right now on us, well at least we can walk and talk and experience the beauty of our family's love and the flowers that are coming into site now.

Sue, I am so glad you had a great birthday. Your happiness brought a smile to alot of us on here I do believe. Paige

Sue, Hi, As I said before I was gaining also on Lexapro. I had my appointment with my Doctor yesterday and told him that I thought Lexapro was contributing to my weight gain. He told me to stop taking the Lexapro and in two weeks to start taking Wellbutrin. I hope this helps and I can actually lose weight now. I know the extra weight has to be making my leg pain worse. I will let you know how I do after being off the Lexapro for awhile. I sympathize with you. I have never taking Wellbutrin and I am concerned about starting a new drug. I think I am gonna go do some research on this drug. Paige