purplefocus

Hey Sue and Nina, I am having a tough morning but reading ya's post has lightened me up abit. Thanks, now I think I can handle the rest of my morning. I think I will go see if I can find more "funnies" about doctors. Oh and by the way any suggestions on how to tame a 3 year old........?!?!? Paige

Ernie, Hey, I just remembered something. Right after I was first diagnosed before I was aware of this site, I went to bookstores searching for anything I could find on this illness. I could not find one single thing in the store, I did have an employee to look up dysautonomia and found a few books that they could order. The thing is if I would have found a book written by someone that had gone thru this and could have found my own symptoms in someone else I don't think I would have been as terrified. So see "WHEN" you get published you will help so many people. Paige

Hey Everyone, I want to thank all of ya for the wonderful advice. 4th of July, I went to a gathering at my family and although I stayed inside 90% of the time, I was able to wander around outside a few times about 10 minutes straight each, long enough to snap pictures and talk a little. I use the advice of being very hydrated before going out and my husband had put a damp towel in the freezer earlier , so I put that around my neck. When I came back inside I did have a bit of heart racing and my legs felt like wet noodles but I was able to just sit down and keep socializing instead of having to go find a bedroom to lie down in. Thanks guy, I felt like a part of the family this time instead of a bystander. Paige

Ernie, Writing this may be exactly what you need. Writing can be a great therapy. I went thru a nitemare of a marriage and divorce several years ago and I started writing poetry..........most of them was about what had happen. Even though most of the poetry wasn't pretty it actually helped me get my deep feelings out. It made me feel alot better. Maybe writing will help you. I know it is an emotional thing. I still have days that I refuse to believe this has effected me and I think I will go back to work but then the next day it hits and I am on my butt. Why not just try, if it gets to hard then put it back for awhile and try again. I think if you can eventually write it, you will be proud and also it could help others. What have you got to lose. Paige

Danelle, I applied in March 2004. I live in Alabama. Paige

"New Update" if you are interested. I received a letter yesterday that the SSDI made me an appointment with one of our local physciatrics doctors. In the letter it just stated they needed more medical information and their determination team decided to send me to this doctor. I hope they understand I wasn't crazy but dealing with all this now I am getting there . Actually I know why the reason they are sending me is probably because of the Wellbutrin they are aware that I take. My appt. is on the 10th of July which is a Sat. I thought that was weird but then I kept reading and the letter stated that my appt. might be on a Sat. I will go because if I don't it says they will make a ruling now on what they have. This is getting so crazy for me. I have been toying with the idea of going back to work but then I have bad days and realize that it isn't really feasible. Ugh............I need this to be over. Paige

Danelle, I understand about you being a nurse and working so hard to be one and the financial situation. I also am a nurse and have been unable to work since Feb. I applied for disability in March at the advice of my doctor. He told me I would never be able to hold up to clinical work again but I might could do office work at some point later. I will keep my nursing licenses current and hopefully return to it one day. About the financial situation, it was hard and still a little trying sometimes. From 2 incomes to one with two kids wow it was hard but we are managing. We don't get to do stuff we use to but there is nothing I can do right now about it. No answer about the disability yet. I loved the way you handled yourself in the ER, I hope I am strong enough to do that when I have to go back. Incompetent and uniformed doctors are sooooo frustrating. I wish you the best. Paige

Hey Deb, Go back and look at some old post. I remember not too long ago alot of people posted about leg pain. Paige

Nina, Sounds like you were playing pinball with your head. I hope you are feeling better. How is your friends doing. I send my angels to surround you and them with sweet peace. Paige

"New Update on my disability issues." I recieved a call early this morning from my case worker, she said she was doing a follow up before they could make a ruling. She asked me about the welbutrin I take and why I take it. I explained it to her again and she asked was I depressed and UH!!!! no, I like having my life put completely on hold. I told her yes from this illness, just as I have told her numerous times, she told me before they could make a ruling I would have to see their psych doctor..............Will this ever be over? Paige

Thank you guys for all the good advice. I am gonna try the neck wrap, and I did think about getting wet but once I decided it was too late. I guess I will save the amusement park for later, Maybe on Halloween . The motrin sounds good also, haven't thought about that. Paige

I have always been a sun lover, love the beach, pools, all amusement stuff outside. This year has been so different. I can't tolerate the sun or heat at all. Even in my house or car if I get to hot my heart start beating insanely. I get flushed and feel like I am gonna pass out. If I go out in the sun it is worse. I went to my family this pass weekend and I didn't go directly in the sun, I sat under a cabana that had a ceiling fan twirling. I watched everyone swim. After about 10 minutes I got so sick, I didn't think I would make it inside. I went in a drank alot of water and got cool and feel asleep for about 4 hours. This is horrible. I want to enjoy my family outside. Does anyone have any suggestions how to tolerate the sun for any length of time. I will accept 30 minutes. I want to take my kids to an amusement park here in Alabama but the way I am I think it would be useless. Please any suggestions.......

I got my husband to read my post here and he also read several of the post others had typed. We discussed this for awhile. I think it made a difference. He did say he wouldn't go to counseling or anything like that.........I think that is a man thing.......But I really think it made a difference. He came home early from work today to help me prepare for our 13 year old birthday party. This was something he had not originally planned. He told me he was worried if I did too much today that I would not feel like attending the party tonight. Which I am sure some of you feel this way too. Anyway I thought this was a nice suggestion and he is trying to understand about this illness. He is attending doctor appointments with me also. Paige

Nina, I'm so sorry about Kelly. I wish peace and comfort to her family and friends. Paige

I know my husband is supportive and he knows I have real health issues, but sometimes he just seems to be too relaxed about it. It kinda scares me because what if I am having some real serious stuff going on and am unable to verbalize it and he just passes it off as POTS stuff. He really doesn't expect me to do no more than I feel like doing. I have completely had to quit working so he is taking care of us all financially. I use to make quiet a bit more than him so he is now having to work more hours a day and has fewer off days for us to make it. What do you do? I know it's hard on him so I try not to say much. Hopefully I will get a positive answer from my disabililty issues. I too think he needs to talk with other spouses of people like us, maybe it would make them not feel so alone , like we do for each other. Paige

Jackie, That was so funny, I could just imagine all the images you were describing. I was laughing . As far as the shortness of breath.......I get it constantly, it feels like to me I can't get a deep breath no matter how hard I try. I try to stay calm and realize I am getting enough air. It still is scary. It happens sometimes just out of the blue, or when talking alot like on the phone and especially, on exertion. I almost refuse to go up stairs any more. I have started searching for elevators everywhere. Paige

Everyone continues to be in my prayers. Stay positive. They are miracles happening around us every day. Paige

Thanks Nina. All that information was great. Paige

And all the other symptoms of dyautonomia, has anyone had major surgery? How did you do. Because of the pooling in our legs, does it make you more prone for blood clots? Because of all the sporadic heart rate and blood pressure some of us have, is anesthesia a problem? Not being able to tolerate much excercise, is walking immediatly after surgery a problem? Anyone that can give me any information will be greatly appreciated. Paige

Nina, That is wonderful news. My prayers will continue on for all of you. Angels among us. Paige

April, Congratulations. That is the best news anyone can receive. Babies have a way of bringing our life to perspective. I had one son and couldn't seem to ever get pregnant again then 10 years later when I thought I had a stomach virus that wouldn't go away I found out I was pregnant. Even though I started completely over and was an older mother (35). This child actually has saved my life so to say. Once again congratulations. Paige

I would love to help anyway I can. I am from the south (Alabama). I rarely see anyone post on here that is from this part. We need to educate everyone everywhere. Paige

Sue, Your daughter sounds exceptional. I agree that we need to make health care workers aware of dysautonomia. I have copied the phamplet that you sent me and I have given it out to numerous people already. I have an appt with my doctor next week and I am gonna take several copies to give to him and his nurses. Don't know if it will help but I have to try. I think she should do it. It is wonderful to have such a support system behind you. Paige

Danelle, I am so sorry you are having to go thru this. Don't give up on the doctors, I know it is frustrating but look around for another if the two that you have don't work out. You will find one, it just might take a little time. Has your husband looked at this site any. I often get my husband to come on here and read stuff, I think it opens his eyes a little. Just try to hang in there, scream , vent , hit your pillows, go for a walk, whatever helps. Keep coming in here, we will help you as much as we can. Know that you are not alone in this. Paige

"Update on what's going on with the SSDI issue." I received a letter Wednesday from the SSDI explaining to me to call a particular person. Now why this person couldn't call me instead of sending me a letter to call her I don't know. Anyway, I called the next day and she informed me that they had not recieved my 20 page question and answer letter that they had requested. I told her that I had mailed it quite a bit ago. She said she didn't doubt it and that it was probably floating around in an office there somewhere. She said she needed to go over the questions with me. She asked me the majority of the questions that was in that letter. There was several times that she mentioned something to me that she shouldnt have known unless she had previously read my answers. We got finished and she said that was all for now. Then yesterday I received another letter from them. It was another request of the same questions and answers I had already submitted and then reanswered on the phone. I am gonna call her tomorrow and ask what this is about. Just thought I would let you all know what was going on with this. Paige