purplefocus

I went into Alabama's AAFP and it did state that they could charge 1.00 per page, and I couldn't find where there was a limit in how much they could charge. I am still gonna see if I can find another way to get a copy of my medical records without paying a hundred dollars. Wish me luck. Paige

Ann, I have had this happen to me once and it has been since I was diagnosed. I also have symptoms of IBS, which my doctor says it is part of this and gave me medication to take before I go out to a cafe. Right after I eat I have to go, this happens probably one out of every three times, it is really frustrating when you are out of your home. Paige

Thanks everyone for the good advice. I am gonna call in the morning and see what I can find out. Just an added little note: I haven't heard anything else at all about my disability(SSDI) that I filed for back in March. The last thing was the psych consult I had the first part of July. Paige

5.00 for the second page and then 1.00 for every page after that. This is what they wanted to charge me to get a copy of my medical record. It would have been over 100.00. Is this normal? Is there another way? I told her to forget it because it made me angry. I really do want a copy. My PCP that I had been going to changed over in his practice to V. A., so obviously I couldn't follow him. He refered me to another doctor, which I ask the lady if they charged the doctor for copies and she said that there is no charge for the doctors, so why is there for me, when is about me? I need ya's input here. Paige

Jessica, I am so glad you and your family are ok. You were constantly in my prayers. Paige

I am so happy for ya. I know you must feel like some of the burden has been lifted. Paige

Nina, Thanks for that information. I knew that there was something else to do with it but I wasn't clear on what it was. Paige

My pcp whom is not a specialist of dysautomonia but he knows alot about it and if he doesn't know he would find someone that does. Anyway he told me it would be fine to have an elective surgery that I had been wanting for some time which will require general anesthesia, he even refered me to the surgeon. I point blank asked him would the anesthesia be a problem, he said that the only different is they will probably put in an arterial line to monitior my bp internally. Paige

Susan, I am so sorry you are having to go thru this. I was where you are about a month ago and for me, the severe stuff passes after awhile then I deal with the less debalititating symptoms. My symptoms prevent me from working but I can usually manage to clean and cook in the house. I have a son that is 3 and I understand about not being able to do what I want with him. I do like Ethansmom said. On bad days we watch cartoon and I am able to just lay on the couch most of the time. One thing we found out he loves is play dough, so I got him one of the little sets that makes things, I put a table clothe on the floor in front of the couch and he will play with that for along time and as long as I can see his creation he is content. You will figure something out. What I really want to say is that I think you will get more mobile. You may not be able to do like all the normal stuff like all day amusement parks but maybe a short trip to a local park in the evening when it isn't so hot ( I assume the heat bothers you.) Your son will adjust and it's good that he has a dad that will pay attention to him. My husband is great with the kids, I also have a 13 year old. Best wishes. Paige

I deal with this also. My doctor told me in Feb to stop driving. I'm in Alabama, our law is you have had to go a 6 month period without losing consious. It is frustrating for me on my good days. I no longer can physically work so I don't have to worry about getting back and forth to a job, only everything else. I am sorry your work depends on this. Hopefully medication will do the job. Paige

What about using letters that stand for something, such as a few years ago when so many people were wearing the "WWJD" bracelet. It stood for a strong meaning for these people and it also got peoples attention enough to ask questions. If we had something like this that would get other people to ask us questions then maybe we could get more people informed about dysautonomia and at the same time make us stronger. Just a suggestion. Paige

War Eagle. I am so sorry that you are having to go thru this. A lot of us on here are where you are. I have good days and bad days. Try to focus on the good things. Do you have family or friend support. Being 28 and faced with something like this is hard but your doctor did say you might be able to go to work in a year, right? That is something to look forward to. Maybe spend some time on perfecting your work skills at home. I am still trying to find my new niche in the world also. Try not to get too dishearted. We are always here to listen.........you can vent away...........you can tell us how you feel and we will try to help you thru. I hope you have alot of good days coming. Paige

Danelle, Of course I know just how you feel. I think you should go ahead and continue with the process of the disability. I applied back in March 2004, I haven't heard a reply yet. I know about all the financial issues. I made twice as much as my husband and now we have lost all of my income and then the COBRA thing is insane. You just have to hang in there. Try to get help from anyone and where ever you can. Just think if that person was in your shoes , would you help them. One good thing is my doctors nurse gives me quiet a bit of medication samples so I don't have to buy some of my medicine. About everything else we just had to cut back drastically. My husband had went from working 8 hours a day to 10 hours and day and he only takes 4 off days a month. I just pray that it is only temporary. We have to stay positive. There are alot of people on here that have recieved these benefits already, it is there for us, we just have to fight for it. Talk with all the creditors, tell them your situation, it might help. I know the frustrations and the helpless feeling but we have to keep our heads up and on those bad days we can come here and be lifted. I wish the best for you. I wished I had a miraclous cure for us all. Paige

Thanks Danelle, Now see how simply just nice caring people like ya can put a warm spot on my heart. I think we where sent here to be each others angels. Look at what 24 hours can do. I went from being caught in a turbulent mood twister from h*%% to finally chilling out. I really wonder how I got alone without you guys. Paige

Thanks everybody, I am feeling some better today. Danelle, like you, I also am a nurse, I have been for 17 years and when I had to quit in Feburary it was so devastating, not only the lost of income but my identity. I love being a nurse. I also have 2 children they are 13 and 3. The oldest one is going to be starting back to school again and I have no idea what I will do on my bad dads with the 3 year old. I only have one sister and one gf that is willling to help and they are very busy with their own life. I do know things aren't as hopeless as I was feeling a few days ago, I'm not sure what gets me or others to that point. I thank everyone for your encouraging words and the feeling of knowing that other people can get thru this then I can to. I think I should focus more on one day at a time for awhile instead of the future. I think that is where I start getting depressed. Everyone of you are wonderful. Paige

Thank you guys for the encouragement and I totally understand what everyone is saying.........but.........my worst times is not when I am feeling poorly, it is when I am feeling good..........the reason is ..........I want to be at work........but I can't hold a job down by being only able to work a few "who knows when " days a month............I want to hop in my car and go shopping or where ever I wish..........but I am not allowed to drive because of the "who knows when" I am gonna pass out..........so see...........it is like I am a prisoner when I feel good...........ok ok ok still venting. Paige

I try to stay positive and hope for a better tomorrow but enough is enough. My marriage is starting to spiral downhill due to this, due to the stress of me not being who I was, not able to work, financial strain, of course I have lost my identity. I am not able to be the mother I was, I am not the friend I am use to being or the sister or the aunt etc etc etc. I thought maybe I was just having a pity party but I don't think so, things just really aren't getting better and I don't foresee them getting better in the near future. I can only stay on this wild ride until it crashes or stops which I hope is soon. I am sure I'm not the only one that feels like this. Sorry folks I just needed to vent and you guys are the only ones that can understand. Paige

I am thrilled for you. I know you must feel like a burden has been lifted and you are smiling a sweeter smile. It is wonderful that you were approved. I am still waiting, I have been going thru the disability stuff since March. I know there is hope. Wonderful news. Paige

I want to add my two cents about that.............you know how some of us get short of breath, well that happens to me sometime during sex and I actually feel like I am gonna stop breathing and I am not talking about the normal "fast breathing" you get during this act. It has scared me enough that sometimes I get too paranoid and decline my husbands advances. Paige

"I want to bring this topic up again". I have been having pain in the back of my right knee for a few weeks now. I have also noted some swelling there an also to the side of my knee. The best way I can describe it is the muscle behind my knee feels like it is too short when I bend it, there is quiet a bit of pain. If my leg is just relaxed it doesn't hurt. I also have the nonresting leg feeling down both lower legs but I was wondering if anyone has this type of pain behind there knee? I am on neurotin which helps the lower leg discomforts. Paige

I agree with the others, I can't believe they let you move during the tilt table test. I also was strapped down in several areas. I had and IV but I also had an aterial line that was internally monitoring my blood pressure. Did they do this? It sounds like the nurses didn't know what they were doing. I had nurses doing mine but before they could start they had to wait for the doctor to come in to do something then they started, then after we did the test (and I crashed quickly) the doctor returned. These nurses had set up on a table the injection if I didn't respond to the tilt table test so they could make me go into my passing out stage. I really think you should ask for another. Apparently these people did not know what they were doing. Paige

Hi Casey, I wished I knew why the pain was there. I have had the normal nerve test but it doens't show much. I have the pain in my knees, behind my knees and down the lower part of my legs. I take nuerotonin three times a day and it really helps. Paige

Hayley, I have to answer a big YES, my symptoms get much worse. Usually a few days before I start I am totally unfunctionable. It is like every symptom I have exacerbates. I know this happens so I just try to accept it and realize that those days are for laying around watching movies. Paige

I totally understand what you are going thru, just as a lot of people on this site will. I was having real problems at work ie. , to many absentees, unable to do my job properly, fainting...........my employer forced me to quit. My doctor had told me months prior to this that I should think about disability but I wouldn't listen. I am in the process of trying to get disability benefits now. I haven't experienced nausea as a symptom I relate to dysautonomia but everyone is different. I wish the best for you. Paige

"Current Update" I went and seen the psych doctor for disability today. She told me that is all she does, is stuff for SSDI. It really didn't take too long. She asked me several questions (about my childhood, my previous job, if I had ever been fired, what 2 + 2 =) stuff like that. She told me that she was given me a diagnosis of depression but I wasn't depressed enough to get disability just off of that. She told me that the board would have to look at everything. She said she would get her results faxed in to them in the next 2 to 3 days. So here I go hurrying up and waiting. It really ticks me off that the depression would even be a factor, isn't it enough that I can't go 3 days straight without passing out, or my fatigue is so bad at times that I have to get someone to take care of my 3 year old. I can't drive any longer, my heart rate goes insane just when I walk from the front of my house to the back, etc, etc, etc. Who wouldn't be at least a little bit depressed. At least I am not out hurting all the medical jerks............Sorry guys, just needed to vent a little. Paige