AJVDK

Hello, Happy Hoildays to you too!! Glad to hear from you!!! Amy

Ok today, they dropped off my oxygen. I had a machine for the house, and then a small one to go out when I need to, it uses liquid oxygen. I feel better some, but does over help help that much, or does it just take the edge off. My doctor is using becaues of how bad my headaches have been, plus my bp is so low anymore, and meds are not helping. So just looking for anyone that has tried oxygen and if it help or not. Have a great night! Amy

Get this on I am ready my medical records from Mayo, they said I had POTS in march 05, and that they beleive I have sleep apnea and that I should have a test run at home.et this one I was not told any of this. All I was told is that I was having PSVT, and Frequent SPVC's. and they made adjustments on the pacemaker. I can't beleive they thought I had POTS there. I went to two more doctors, before I was told I had POTS in June of 05 Anyways, I don't want to read anymore........ o'well things happen! Amy

Ok I am getting ready for my disaility haering on Dec 23. now dumb question I was looking at my medical records the doctor in june only told me I had POTS, but the medical records so I have neurpcardiogenic syncope. Are these close to the same. Can you have both? Dumb question I know but I want to make sure that anything that needs to be listed is on the paper work! Thanks, Amy

Well as some as you know I was taling about quitting my job. Well on Dec 15th I gave noitce after working for my company for 5 years. If funny I thought I would always be there. The good thing if things change with my health I have an open door to come back. So I thought thursday as going to be the worse day for me, but then friday came. I thought with making the annoncement that some stress and maybe I would feel better with some of the stress gone, but I didn't. I fact I just felt wrose. Thank god Cleveland called me back, and we are makeing mild changes in meds. My family doctoer is having oxygen deilierd next week so that I can use that as need as it did help some yesterday in the office. and then I even wnet and got my handcap stick for my car yesterday as I am having a hard time walk very far anymore. Plus the hard thing for me also is next week a wheelchair so I can still go out and be aboe to go with my husband and son, as I get ried very easy. So I know all these things are going to help me, put I guess I never thought I would happen to me. On the good side of things I am getting the wheel chair for free, as my doctor is giving it to me, and check this on out my therapist of 5 years told me that when I go on disablity that disablity is no cover in the office (medicad i think??) but due to everything we have gone thought the the changes I have made that when I can no longer pay for therapy, she would do it for free. Wow I can;t beleve how things are working out. I have been depressed about money, worried about everything and things are strating to work out. Thanks for the prayers. Also if you know of anything I can do to help other with POTS, finding ways to help raise money for the web site let me know. I am going from working 45-60 hours a week to nothing (plus I don't want to gice up, my goal is to take a break, slow down, and work on find what works for me so I can return to the work force again someday) and would like to do somthing when I feel good, plus if I am helping others, all the better!!! Talk to you all soon! Amy

I hope you start feeling better soon. I am glad you know whats wrong now. Good luck, and hope it clears up soon! Amy

Well today was the day, I gave my notice. I cryied more today then i have in a long time. My boss who I never thought liked me was at a lost for words. I found out today that she truly cared about me, just showed it differently. Today was so hard, and I not sure how I am going to get thought the next few days, but I am going to put on foot infront of the other and hope and pray that this help, and maybe later down the line i will get better and feel better and can one day go back to work. I found out today, that I still have a future with my company if I want to go back at a later date. Maybe in a year or two things will look better. O' by the way Cleveland called be back today and talked to me. They said the reason I am getting headaches, and forgetting things, blurred vision, and just not feeling right is that my blood pressure is just going to low. Keep your fingers crossed they are coming back on friday to let me know what they are going to do. I am hoping that we are going to finally try the IV fuild.At this point I just want to try anything. I just want to stop feeling out of it, Iam hoping to find someway for the pain in my legs to stop.... I guess I am asking for too much. I know many of you have alot more on your plate, and here I am coomplaining about mine. Well have a great night, and thanks for the support, and prayers. My 1st hearing for Disabiltiy is Dec. 23, at 12:30 please keep me in your prayers, I really need this to go though! Thanks again, Amy

Support hose have helped me some, I just wear really fun knee high sock over them, I make the best of it, plus if you where pants no one will ever notice. I would talk to your doctor about the rest and see what we things. I wish you the best of luck! Amy

Congrats, I am happy for you!!!

Well it been a really hard week. Last week I went back to work, and thing have gone down hill fast. I was getting worried by the end of last week as my headaches where getting worse, and getting chest pain, but the big thing was the pain in the back on my neck. So I went and saw my cardio doctor on last friday, and he made his mind up the my metoprol need to be increased. I know it may take time to work, but nothing got better so on this last tuesday I went to may family doctor told him what was going on we said well maybe it was my neck was out of line so he but my neck back in line for, which when we did that the room strated to spin, he made sure I was alright and then left the room, he sent the nurse in thinking maybe my sugar was low on top of everything else, but it was 99 so it was fine. So then he came cback in only to say the one thing you never want to here. I don't want you to give up hope, but nothing is working, you have gone to mayo, and cleveland, and tired u of I and many different meds........ I thinkd it time you think of your what you want you life to look like, and it's time to give up working and I will help you get you disablity. I started to get upset so I got out of there as fast as I could. Now I am done to what do I do. Right now my life is work and sleep, If I am lucky enough to feel up to it I will try to spend time with son, and play with him! I feel tried all the time, all I want to do is sleep, but I wake up all the time I never get good sleep, I am dizzy 1/2 the time, I have chest pain, and shortness of breath....... ( sorry just keep going onon..) My doctor this if I take the stress of my job out of my life that maybe things will get better. Plus that way I can get up when I feel good, and move at my own pace. (that would be nice) Now heres where my mind kicks in. I am only 26, and had all these goals. I don't want to give uo my job. My job is the only place I feel normal, and escape whats going on as the fact I don't think about it. Plus 2 years ago I went to rehab, and when I was there they said pick somthing and do everything to focuse on that and it will help pull you though. So unfortently I but everything in my job, and it worked of a long time, but I looked around and now I have little to show but my job. I move up in the company fast, but now what does it matter. This week on the way to work I forgot where I was going. I can't walk unit away more as I walk up one flight of stair and my heart starts to race and I feel like I am going to pass out. I am forgeting thing, I am typing the wrong numbers and spending more time fixing my mistakes, plus I use to be a great boss, now everything pi** me off and I just lose it. I can't handle my life anymore and I am scared to give in on the job. I am worried that I will get even more depressed and go back to drink or somthing wrose. I just can't take much more. I sorry to be going on and on I just don't know what to do or where to go from here. Well I am going to try to sleep this off, and hopfully be thing clear when I get up...... Thanks for listing! Amy

Happy B-day! Sunfish!! Amy

GOOD LUCK!!! I hope they find out whats goign on so you can start feeling better! You will have to let us know how things go!!! Amy

Congrats, I am happy for you. Sounds like things are getting better for you. It;s nice to hear good things!!! Hope things keep getting better!!! Amy

Well I just got home about an hour ago. It's nice to be back home!!! Well I did great on my cruise until the 5th day. That day we went to Panama, and it was soooooo hot! I was only outside for about 2 hours, but I got sick, over heated and ever since my bp is running very low when I got up today it was 77/42. In fact, I am alittle worried about it. So I called the doctor and they can't get me in untill next Monday, so I am hoping it was just being over heated, and hope being back in Iowa I will start to feel better! Although when I got home there was snow O'well, it's still great to be home! But over all I had a great time and got a chance to relax for once and slow down. Also was a great chance for myhusband and myself to grow close again!!! It been hard over the last few years with medical bills, and just being unable to alway pull my wieght. But we really got a chance to grow, close, talk and love back in love!! Well got to go!! Have a great night! Also I really missed talking to all of you!!! Amy

I wish you the best of luck, and hope they find what they are looking for and that it makes you feel better. Let us know how things go! Good luck and you will me in my prayers. Amy

Hello, I had mine remove when I was 18 years old. I felt alot better after I got it removed. Amy

Nina, Glad to here things turned out good for you! It nice to hear when good things happen, it give me hope! Good luck with your race thats awsome!!!! Amy

Rita, thanks for the info! I am not sure what I am going to due. I hoping I don't have mono, but I not am not sure what to think. I am hoping things get better soon! I am hoping that if I do have mono, it will not make the pots any worse! Have a great night! Amy

For me I only get pooling in my legs, for me my hands are always ice cold, is that a pots thing too?

Well I went to the doctor today because I am still not feeling any better, now, I can't get out of bed, my back hearts so bad I can hardly stand it, and my cold/ flu has not gotten any better. So I went to the doctor today, and after taking blood from my finger again, they said that my blood cell count drop in 1/2 over the last 5 days, and with everything going on they drew more blood, but they think I have momo. Just what I need! ( I will know on thursday if it is momo) I am trying to get better, and get back to work, puls next wed. I leave to go on my 1st cruise out of FL. I been waiting of this for a long time. My husband and I been married 7 years, and still really never gone on a honeymoon, so this is going to be it for us just alittle late! So I can't wait to go, plus I just want to relax, and get away, but my pots has just been getting worse and now I may have momo. I just not even sure if I will be able to go now. Well on the bight side of things it could be worse. Well sorry to be so down, so much latly, but this is the only place I have here people understand! Hope you are all doing well, and hope I can report soon that things are getting better! Amy

Good luck Lisa! I was very untight when I had mine...... but it open the doors to what was going on! I wish you the best of luck! Amy

Wow, I am so happy for you! WAY TO GO!!!! Amy

Thank you all for your support. I am just hanging in untill I get more energy. Thanks again, Amy

Hello, I am so happy for you! It's nice to here good things! I hope they keep coming for you! Have a great weekend!

I just wanted to say Hi, and say sorry I have not been around the last week. I been feeling down. I got a touch of the flu. Then to top it all off I went to a new cardio doctor on Tuesday......... and needless to say I think it's going to be a waste of time. He is a nice man, but doesn't seem to want to do anything. He received my medical records for Cleveland, and doesn't seem to be looking at them, or really doesn't seem to care. If you don't know the hole story about my trip to Cleveland here's the short of it, they found out that my blood if flowing to fast thought my body, and that could be causing some of the problems...... so they said I should start in cardio rehab, that I need to have my blood check as my red bloodcell count is very low, and that my meds would need to be wacthed and should be adjusted as needed, I need to keep fluid intake and salt high, and may need IV treatment. This new doctor doesn't want to do anything at all, and he want's wait 3 months, and see than how I feel. Then to top it off he's got a idea that maybe all that is wrong is I have pacemaker sindrome (not sure on the spelling). Now don't you think if that was ture they would have found that in Cleveland. So know I feel like I wasted my time and money by going out to cleveland, as I am finding it hard to get the treatment back home. I am just tried of fighting. I went, and saw my family doctor on thursday as my cold/flu was not getting better, and I explained my feelings to him, he said he would talk to my cardio doctor, but maybe it's time for me to think about lifestlye changes. Like stepping down in my job, going partime, or even to stop working as I am not getting better. Is it wrong I don't want to give up, and I don't want to quit my job? Although I feel like that's what I should do. I just want to contiune to work I want to live a normal life. Maybe that my problem that I am trying to fight everything instead of finding what's going to work. If any of you have any ideas that would help, please let me know!!!! Confussed on what to do!