danelle

Sophia, this is some excellent advice. You are right. I couldn't represent myself properly for many reasons. One, I don't know what the heck I am doing. Two, I don't have the strength or energy or concentration(it's hard enough to write on here sometmes). I really appreciate you putting things into perspective for me. I guess I was just thinking about how much money I would lose, but i would lose it all anyway because I would never get approved on my own, so it will be money worth spent. It is just such an issue with us right now(money) as I am sure it is with anyone in this situation. You mentioned a vocational expert-what exactly is that? I have a general idea but not quite sure what they do in this situation. (another reason I shouldn't represent myself). Heck, I would probably collapse in the middle of the hearing-I may anyway even with an attorney. Once again, thanks for opening my Potsy eyes I don't think I am thinking very clearly right now between the pots and the stress I am a mess. Danelle

Thanks for everyone's advice I have an appt with a great SSDI attorney at 10 in the morning. Sophia, WOW, how did you do it on the first try AND on your own? I am willing to take on the huge task (with help from family) if it means I can save thousands-which I would. I will have plenty of time because here in NC the wait is about 1-1/2 yrs before you even get a date. I understand completely what you are saying about the attorney though. After all, that is what they do for a living. I was just thinking about how bad we need all the money we can get. If you don't mind my asking, how did you do it? Do you have lots of dx? Mine are POTS, fibromyalgia, CFS, depression, anxiety/panic disorder-those are the main ones. I am going to keep my appt for tomorrow morning and see what they tell me but I would LOVE to hear what you did. You can either post it here or you can email me directly.

Thanks MM, so you DO recommend a disability lawyer. I know it is their specialty but what can they do special for me?-Sorry for asking such a stupid question. I will check out the websites. I have been using some already but maybe you have some new ones. Thanks so much, I can't say that enough. I just hope there is someway that my family will make it through this thing/

Hi all, I told you I would update you when I got my decision on my reconsideration for SSDI. I was denied again. Needless to say, I am totally crushed. It will be a good year and a half now before I get a hearing. Sometimes I wonder if it is even worth it all. I don't think I will win then because I sent in so much stuff(medical records, very detailed letter from my dr, letters from my sister and bestfriend, letter from my former boss, letters from my congressman, many articles on POTS, etc etc etc) I have had a neuro consult, a psychologist consult, and a pschiatrist consult that were set up by SSDI. Both my case workers told me that I did more than 98% of people who apply as far as havning everything complete and so detailed. Figure that one out. Obviously it doesn't help. Don't know what else to do. My family cannot survive for that long, nor can my marriage. I am beyond desperate. We cannot get any kind of help from the governmental programs, etc. I have been told to get a lawyer by some and not to fool with a lawyer by others. Yes, they can organize your stuff but it already is. I heard by SSDI that an attorney doesn't help your chances at the hearing level. Any suggestions here? I don't want to get one unless I have to and it will make the difference of getting the SSDI or not getting it. Thanks for listening and please sent some luck my way, along with advice, danelle Sorry I have neglected everyone lately. I haven't been posting or anything. I have been neglecting my family and myself as well. I am just so down and feel useless --especially now that I didn't get the SSDI. SOMEONE PLEASE HELP

Mine does that on a daily basis. Many times a day, sometimes worse than others. Sometimes it will do that on and off ALL day and scares the $*&(&^ out of me. Then I have the runs of very fast beats and the runs of very fast and irregular beats. I have been having more problems over the past week and have been taking more of by beta blocker(atenolol) but even though I have had these episodes for 19 yrs now, each time is like the first and I get in a total panick if it is one of the worse ones where I feel like I am going to faint. The others, they give me anxiety attacks too, just not to the panick extreme. I sure wish I could get over my fear of these things. I am aprisoner to them and am sick of it after 19 yrs. But when you can't even walk across the room, sit on the couch, or even try and go to sleep at night without it happening, it is just so scary. Anyone with any good suggestions for the fear would help us all. Just know you aren't alone. Danelle

Radha, I too take atenolol daily. I take 37.5 mg per day and when I am having a real tachy day I take an extra 12.5-25mg even though my BP is in the low 90's/50-60's before I take the extra dose. Sometimes it helps and sometimes it doesn't. I have been on atenolol for 17 yrs now. I started out at 6.25mg/day and it was almost too strong!!! Gradually over the years, it doesn't work as well for me. Even with what I take now, I have tachy EVERY single day just walking through the house. Any advice from anyone on something else I can do? Before the atenolol we tried lopressor, cardizem, corgard, sectral, and a few more but it has been so long that I forgot which ones. I am reluctant to try a new one becuase the atenolol has been my "lifesaver" for so long but now I am scared that it will fail me and I will be back up to 180-200+ on a regular basis.

Radha, Unfortunately I haven't found anything that works. I basically drink protein drinks, water, and my gatorade/salt drinks. That is what I mostly live on. Needless to say, the pounds are shedding a little more than I want. I do try and eat VERY small amounts of what Paul fixes for supper(if my stomach doesn't feel too full or nauseated). I will fix a saucer with some food on it. I can usually eat part of it, but still have the same problems. If anyone knows of a solution, please let me know. Sorry I couldn't be of more help to you. Maybe try eating baby amounts every few hours and see if that works for you Danelle

Just wondering if anyone has heard anything new about Dr grubb. I had an appt with him at the end of the month but received a card in the mail cancelling. IT stated that he had had surgery but was going to have to have more. I didn't call the office becuase I ddidn't want to bother them but just wondering if there is any new info. Thanks, Hope all is not so "POTSY" today like I am!!!

Tearose, I do cry with and for you. This is such a tragedy. I feel your pain. I am too trying to get my SSDI. I am at the reconsideration phase, awaiting an answer. I have often thought myself to "just try it one more time" you can go back to work, knowing I can't even get around the house much less work but I completely and totally understand where you are coming from. So much of what you said I could repeat word for word. I haven't tried the working thing(because I can't even drive or "take care of myself" at this point-BUT I know exactly why you did try) but talking about your "prior" life and all that has been lost, not knowing where to go-financially, physically, spiritually, etc. I do still mourn the old me but I am getting better with it(I think). I don't wonder "why me" anymore. I just wonder what it is that I am supposed to learn or do from this lesson God has given me. I can say that after reading your post I am more determined than ever to get the word-or better yet - the EDUCATION that people, drs, nurses, psychiatrists, psychologists, JUDGES, attorneys, etc about POTS and dysautonomia and how it can affect EVERY part of a person's being-not only physically but emotionally as well. Heck, people with JUST one ailment can get disability. BUt those of us with POTS that affects everything from our head to our toes-can't get it. People just don't understand and I am sick and tired of their IGNORANCE. Many times when you try to educate them they don't want to learn...................... I thank you so much for your post. I know now not to get too discouraged and "try" and work which would be a disaster on day one before my shift even started. I am just so sorry that you have to suffer for trying to be honorable, and independent. That to me should say a heck of alot to the judge. What a screwed up system we live in. So screwed up. I could go on and on but I will stop for now. I have no words of wisdom for you. I wish I did. Just know that you have others that are thinking about you and praying for you. My heart does go out for you. Can you appeal the hearing and get another one or do you have to start all over again? Can your attorney fight like **** to explain why you tried to work instead of just (what they would consider-giving up)? Please hang in there and keep talking to you. Feel free to email me personally if you want. Once again, I am SSOOOOOOOOOOOOOOOOOOOOOOO sorry. Much cyber hugs, thoughts and prayers, Danelle

I am feeling some better Thanks to all of you AGAIN for all your encouragement and wonderful advice. About feeling the arrythmias, the only thing I can say is that I think that I am so intune to my heart that I can feel everyone that I have(well, I'm sure not EVERY one). Maybe those of you who don't feel them as much but show up on the monitors just aren't as "fixated" and anxious about them as I am. I am trying to get that way myself but after 19 yrs, it is gonna take alot of retraining. You all are the greatest! I will take EVERYONE's advice. and try all the different things you all mentioned. I wish I could be here for you all more often. I am going to try and stop by the site each day and reply to atleast a few of you. You all have been so good to me and I couldn't make it through this without you, I really mean that. You all are my angels

Gena, I have heard alot of people talk about taking magnesium. do you take magox or just plain magnesium? How much do you take, can you take too much? Can it make your arrythmias worse? that's why I haven't tried it. I didn't know if it could make them worse or not. it seems like everything I take makes them worse and i am very sensitive to meds anyway. thanks for the input, sorry for all the questions. I did survivie through the night and am praying for a better day, hope you have one too

Mary, so good to hear some good news form you. I have been worried about you and Marissa. I haven't posted in a while but I am going to try and catch up on the posts over the next several days(as I can) Just know that I am thinking about you and praying for you both. I miss talking with you. LOVE, Danelle

Thanks for your replies. They mean so much. Merrill, you are so right about the ER. They have no clue what to do with a "POTS" patient. I have to tell them to give me a bolus. When I get one, after about half has gone in, I get very short of breath and my HR goes way up. This has happened 5 times. I have never smoked and to my knowledge have no lung problems(other than the typical being out of breath alot with POTS) but it is strange. I will continue to drink my gatorade with lots of added salt and plenty of water. I will try a snack but my stomach stays so bloated allt he time(guess that's the POTS too). I will find something to try and take my mind off of it but not sure what just yet. Blackwolf-everything you wrote was so tender. BOth of my parents have passed so I really miss that parental "love and support". I really miss my parents. More than I can say. When I try the breathing thing, it usually makes it worse but I don't know hwy that happens either. Gayle-Ihave had more tests than I can to mention, including monitors etc. but when I wear the monitors, my heart straightens up(most of the time) so they havent been able to catch the really bad stuff. Maybe I should just buy one and leave it on forever until they get the bad stuff Once again, thank you all. I WUV you guys. I am still scared but you have made me feel better. I don't know why it terrifies me so. This has been going on for 19 yrs now(sometimes worse than others) and each time it is like the first-it freaks me out. Ionly wish I could over come that fear. It would be one of my biggest accomplishments.

Hi all, sorry I haven't posted in a while, it's a long story. (along with not feeling well at all-very POTSY these days which is getting to be my norm.) Today, I am having LOTS of irregular beats. IT is scaring me pretty bad. I don't know what has cuased it today. My HR isn't fast just irreg. The temp here has dropped about 20 degrees or more over night and I am wondering if that may be it/ But then sometimes it does it regardless of whether there is a temp change or not. I just know that in the past that the season changes tend to be bad for me. I may not deserve any responses because I haven't posted in so long but honestly, without whinning too much, things have been not so good to put it mildly. Seems like everytime I get comfortable today, it starts skipping and jumping. Ihave taken extra clonazepam and a little extra of my beta blocker to see if that would help but not yet. Please respond if you feel like it and feel well enough, I am VERY scared. I am afraid it will go out of control and I will have to call 911 or will pass out or die or something. THanks, Danelle

How terrible!! Prayers are being sent his way. Please keep us posted.

Morgan, my heart goes out to you and your friend's family and other friends. It is so hard to lose someone, and at the holidays, it seems to make it harder. I pray he has a speedy trip and a peaceful one. God Bless you all and I will be praying for you.

Nina, you are one amazing woman!! I admire you, your strength, courage, and attitude so much! I only wish I had a portion of your "spunk". I used to but is has dissipated over the years. That is my fault though. Congrats are definately in order and I hope you have a very wonderful holiday season and get some relaxation that you well deserve. By the way, I LOVE my bracelet! The ONLY time I take it off is when I shower. My husband wears his everyday too. I will be ordering more soon for other family members. Thanks for all you do. You are fantastic

Welcome Ayelet, glad you found us. We are here for any questions you may have. Everyone here is so kind and willing to share with each other. It is the best thing that has happened to me since I got my dx. I thought I was all alone with this mess. I can't tolerate heat AT ALL either, I get symptomatic very quickly. I just try and stay out of the heat as much as possible and when I have to be exposed, I just drink lots of fluids and use a cool cloth. Sounds like others have given you great advice as well. Again welcome and I look forward to reading more of your posts in the future! Danelle

Welcome young Butterfly, glad you found us! If you don't mind, l would like to ask you a few questions. How were you diagnosed with POTS, and how were you diagnosed with IST? How long have you had symptoms and what were/are they? Is there a family history? Post as often as you need and want to, there is wonderful support here and so many people are glad to help and share their experiences with each other. IT really helps Hugs sent your way, danelle

Opus, congrats on getting back home! I hope you have a great Christmas and stay hurricane free! And as Ernie said, Don't overdo it!!!

Hang in there Morgan, we are thinking about you. I have been "down" lately too and haven't posted in a while. It does make you feel better when you do because of the wonderful support you can get here. I hope everything will work out for you and I will pray for you. Oh, and if you find a waaambulance, send it my way when you're done with it-would you

Looks like I got my hopes up for nothing I think the whole process is ridiculous. I realize they are trying to weed out the people who really don't need disability(and I know a few of those personally) but the ironic thing about it is, they usually get it pretty quickly. Figure that one out. Those of us who have worked for years and have put our money into it should be able to get "our" money back when it is absolutely necessary. I wish everyone else good luck who is going through this process, it sounds like we all are going to need it. It's good to be back on the site , I hope I can continue to post. I know when I do, it always makes me feel better, even though it's hard to do sometimes. Oh, and I just dearly LOVE my bracelet! I wear it with great pride, my husband wears his everyday too!

Hi, I just spoke with my disability worker today. i am at the reconsideration stage. She said that they needed one more piece of info before they could close my case. She said they needed a letter from my boss stating my functional abililities. SO I called my boss (ex-I had to resign in June) and she was absolutely wonderful! She said she would do whatever it takes to help me To make it short, I gave her some info and the letter from my GP. She is going to write me a letter and fax it to them tomorrow Question-DOes this mean that they may give it to me this time if they get a good letter? Or is this just part of the process? My thought is, if they were going to turn me down then they wouldn't even ask for it. Maybe it's just wishful thinking. I can't bare the thought of being denied again and waiting 16+months for just the hearing. WHat do you all think? Mary, are you there? THis is a good one for you. Thanks to all, gotta go hit the ibuprofen

Thanks for everyone's thoughts and concerns. Hopefully I will get "on my feet" again soon. I really appreciate the thoughts and prayers. Please keep them coming, as I will keep them up for you all as well

Mary, I'm still here. I just haven't been feeling like doing anything at all. I check the site from time to time and read a few of the postings but haven't replied much at all lately. I didn't get your message(figure that one out ). Sorry I missed your calls. Without going into much detail, things just aren't good for me at this point in my life(in many ways). BUT, I know that someday they will improve. I hope your daughter is doing better. I know I read a post about some problems a while back but I have been so POTSY lately that I can't remember one minute to the next or even complete a sentence without sounding totally ridiculous. Even though you haven't heard from me, I am thinking about you ALL and hoping everyone is feeling less POTSY than me Many hugs sent to you all, Danelle Thanks for caring and looking for me on the site, when I saw that post, it made me smile!