purplefocus

This is wonderful. I can't wait either. You all are so great. Paige

Danelle, I went back and read an old post of yours where you had applied for disability. So it looks like this was your first denial. Whatever lawyer that you talked to that did not give you much hope.......PLEASE......don't go back to that one. You need someone that is positive and on your side 100%. They are out there, just call around. You also had in your post that things were already finacially difficult. I can relate to that all to well. As a nurse, my income was the largest, so when I had to quit, it put an impossible burden on us. We have had to have help from my husbands mother just recently. Of course I hated this but if it was my child I wouldn't have thought twice about it. Something else, I have learned to live very frugal. We never eat out now and I can buy groceries including laundry detergent, paper goods, etc for a family of 4 for fourty dollars a week. This includes one every growing 13 year old boy. I live in Alabama, I know this could be different in other states. I go thru all the local sales paper, coupons and make my menu for the week around it. I have talked to my mortgage company and was able to get a deferment for a couple of months. It did tack on extra at the end but it helped for now. Like the others I have sold stuff. I thought by now we would be homeless but there has been away every month. My husband has taken on all the overtime he can. Look into every possible resource you can. If you are involved in a church, they might be able to help for awhile. Just know this is temporary and you will get what's coming to you. Paige

Danelle, I am so sorry you are having to go thru this. You have been giving wonderful advice on here. Please take it to heart. We are our worse enemy at beating ourselves up for this illness. We didn't ask for it nor caused it but we are having to suffer from every corner of it. Mentally, physically, emotionally, finacially and on and on. Like someone else said if it was your child sick, would you blame them? Appeal, appeal, appeal. Don't give up. Sending hugs and positive wishes to you. Paige

Tearose, I am so sorry you are having to go thru this hard time. If the people that had to make the disability decision could spend a day in our shoes they would have no doubt of approving you. It is just the system is so hard on everyone so I guess they can weed out the fakes. Stay positive. Surely your lawyer can make the judge see that you need this. I too was punished for "working". I thought I was doing the right thing because I didn't want to go on disability but what we did in the past we can't go back and do anything about it. I feel like if I was approved anyone can be. I wish you the best. Our mental health sometimes takes a beating. I know mine does because from the outside most of the time I look fine when really I am not in the least bit. Most people just don't understand. I wished I could find a book of encouragement for people with chronic illness so on my bad days that I can only lie in bed I could read it. Don't give up hope. Paige

Congratulations. That is wonderful news. As far as Ethan is concerned. You will probably be amazed at how much he will actually be a big help to you. Big brothers can be awesome little guys. You are a wonderful mom and I know you will juggle this perfectly. Once again congratulations. Paige

I thought I was the only one that had POTS and a weight problem. I have been overweight for about 10 years now but with the last year of inactivity, medication and depression my weight has went even up. I am now scheduled for a doctor appointment about the gastric bypass surgery. I do try to stay in control but it is so very hard. Paige

Well ya have brought something to my attention. I haven't even thought about how the cold weather will make me feel. I actually was looking forward to it. Right now our weather is great (when it isn't raining). I live in Alabama. The temperature is perfect. I had a horrible time this summer with the heat, I hope I tolerate the cold better. Wow it is already that cold in NY? We are still wearing shorts and capris here. I haven't pulled out any of my winter stuff yet. Alabama is crazy like that, our winter usually hits us fast. It will be 70 one day and then 40 the next. I will be watching for all the advice so I can avoid problems with the cold as much as possible. Paige

Danelle, I didn't do anything special. I just did what they asked and waited. I had gotten so stressed worrying about everything that I had to find a way to cope. I came to the realization that I did not have to be in control right now. I could let go and let others take care of me. My husband is very supported and I know that has helped more than anything. Of course no where in my mind do I think this is permanent. I also had to let some of my pride go and allow others to do things for us. That was hard but you know, I had done so much for people over the years and I never thought any bad thoughts toward the ones I was helping so I figured they couldn't be thinking bad thoughts about me. I still have days where nothing helps with depression but I have many more good days now than bad days as far as depression is concerned. I have become really good at given advice to everyone I can about taking out disability insurance with the company they work for and stuff like that, when I do little things like that it makes me feel like I am making a difference. We really don't need all the extra worry along with having to deal with our illness and I am sure for most of you like myself, finances is the biggest worry..........losing your house, cars, unable to pay bills, where is money for the groceries coming from, kids still have school expenses and so on............I know our struggle still goes on today but I do have an answer and if I can get approved then I think anyone can. I sure am in a rambling mood this morning. Haha Paige

Ok Ok OK folks, ya have got to quit with the emotions mushy stuff. I do try to stay in control or maybe I am just feeling extremely emotional this morning. Response to how it feels to be on the other side.........WEIRD.........I thought I would take care of people the rest of my life.........I'm one of those that thought I would stop working when I no longer could (maybe at age 70 or 75) not when I would get to early retirement. I figured I would go out kicking and screaming, well in a sense I did just way early. Paige

Julie, I know exactly what you mean about working. I was a nurse for over 15 years and that was my passion. I adored being a nurse. When I would hear other nurses talk so negative about there career, I never could understand it. Yes it was hard work but what you got from it was more than you could ever be rewarded with by money. I miss it sooo much. I feel like being a nurse was 75 percent of who I was. I have adjusted somewhat to my new life but I still have hope in the back of my mind that I one day will return to nursing. I refuse to let my nursing licenses expire. Also that is where most of my social actions started at and now I am mostly alone all day except for my 3 year old, until my husband gets home from work. I rarely feel like going out and if I do I only go with him, as far as going out with other girlfriends, I just don't feel safe. Like I said I am adjusting and I don't have a mindset that this is the way it will be forever. I didn't get this positive overnite, it has taking me almost a year. Paige

If you had read my previous post you would have seen that I received a letter about my disability claim that said my medical part had been approved but was still deciding on the non-medical. Well yesterday I recieved 2 different calls from different departments of the Social Security Dept. that told me I had been approved and they also were getting more information. They also got my banking acct number for direct deposit. They were able to tell me what the amount would be and that I should recieve a payment by November. Yea!!!!!!!! In time for Christmas. This takes such a tremedous worry offme. I have felt so bad not being able to pull my part of the finacial part of our life. My husband never once made me feel bad about this it was something I did on my own. You know how some of us put blame on ourselves no matter what anyone is saying. Nobody give up, I thought I was gonna have to go thru all the appeals and figured it would take a couple of years but I am grateful that didn't happen to me. I thank all of you that answered all my questions and have giving me such encouragement when I have gotten so down physically and emotionally. This is the best forum site I have ever encountered. Another yea, now I will be able to afford a Dysautonomia bracelet. My sun is shining brightly this morning. Although I am having chest pain and shortness of breath and my heart rate is around 130 I still feel ok. I know this will pass just like it always does. I am able to really smile today. Paige

About the case person. In the letter I recieved it stated to wait until I recieve my second notice before I call so they could help me better. I probably won't wait. Filling out the claims form, the part about how this illness has changed your life, I left nothing out. I explained everything that was changed. I gave them the information and scenerio from my worst day. My letter said my medical disability was approved due to my dysautonomia, (my doctor never made a formal diagnosis of POTS or NCS although he did tell me verballyand I also had a positive TTT) and they included that I had also stated I had periods of fainting and dizzyness especially after standing for awhile, shortness of breath, constant fatigue, leg pain, unclear thinking and fast heart rate. After all that it said that after reveiewing my medical records and statements given about my condition I was approved disabled. The only statements I could think they would have read would have been from my previous boss that had observed me passing out a few times at work and the debilitating change I was going thru, I had worked for her for many years so she was aware of the drastic change that this illness was bringing on me. Also I believe my doctor had probably in his chart how severe I was at time due to some of my office visits with him I was barely able to communicate (because of unclear thinking and fatigue). I told plainly in my paper how I went from being a nurse, mother and wife to being homebound, bedbound etc due to all the above. I tried to really leave nothing out. I never made stuff up nor lied........if you are like me and the most of us there is no reason to. Of course all this doesn't happen to me every day but it does more than not and I am definintely unable to work. Sorry I got off track, after they stated all that in the letter then they stated that they find me disabled. I hope this helped. Paige

That is wonderful news. I know I was battling the same thing. My doctor had ony gave me a diagnosis listed as dysautonomia , not the particular such as pots or ncs, which he said I have both to me verbally but never listed them. I think there would be a fight about your two such things being the same, they do have two seperate names. I really don't think they could call both of them pots..........I know how insurance can be but also we have to be our own advocate. Congratulations on getting the insurance. paige

Blackwolf, I haven't worked at all since Feb 2004. I worked a few days the first part of Feb. I had not worked full time since Aug 2003. I was scheduled full time but due to my illness I had numerous absents for those next 6 months. I averaged maybe a total of 14 days a month. Then after those few days in Feb. my body decided it couldn't do it anymore. I guess that is what they went by since I did work in Feb. Paige

I receieved my letter from social security regarding my disability today and they told me I was approved medically but they would be sending me a second letter to let me know if I would be approved non-medically. What does this mean?????? So medically I can't work but non-medically? Is this the thing about supposing to work so many quarters a year? If that is the case I worked over 19 years of full time, shouldn't that qualify me? Now I am worried again. Also they say that my disability started in Feb 2004, how can they say that when I was diagnosed Oct of 2003? Well at least I have been approved medically although I have no idea what to expect now????? Paige

Morgan, Where did you get the information that the state had 120 days to give you an answer. Of course no one at the claims office has told me this. I filed the first part of March 2004 so it has been well over 120 days. Paige

Here is the latest update if you are interested. I talked to a claims person yesterday in the local office. I asked her what was going on with my claim and why hadn't I heard an answer yet. It has been since the first of March. She told me my claim was chosen to be reviewed in Atlanta. She said if I haven't heard anything by Oct. 4 to call her and she would call Atlanta and see what she could find out. Have any of ya went thru this second round before you even found out the first answer. It is insane. I have called some places to go for interviews (I am a nurse) because things are just too tight. I know I won't be able to hold up long, probably not even an 8 hour shift. What do you do? I haven't worked since Feb. and don't know how I can now but I have to do something. Paige

Let me tell you all what's going on with my disability claim. I have a post much futher back that explains alot of what happen at first if you are interested. Ok here we are a little over 6 months since I initially filed for the disability. I have recieved no news from anyone so yesterday I called the disability specialist that was assisgn to my case and she told me that she was no longer on my claim and that I should have recieved a letter by now that I need to contact my local office. Ok after numerous calls to my local office and filling up everyones voice mail box that I could, I finally recieved a call this morning. She told me that my claim has been sent to Atlanta ( I live in Alabama) for a second review. Well what happen on the first review??????? I have not heard a word and she would not tell me ANYTHING other than I should hear something soon. Is this what ya have been thru? I just wished they would simply say yes or no so if it is no I can get on with an appeal. For those of you that were approved how long did it take you to get your first initial answer? Still hanging in there. Paige

I am sooooo happy for you. I am still in the first waiting phase. I hope to at least hear a yes or no soon so I can go on to the next stage if I have to. I am really so glad it happen for you. I know what its like to wait . Paige

Happy Birthday to you......... Happy Birthday to you......... Happy Birthday to Staaaaaacey Happy Birthday to you ! Ok so I might not be the best singer.....but I tried. I know how you feel, just like most of us do, so I tried to at least get a smile. Paige

I am glad you are over that. I know how draining this whole process is. Hopefully you will hear something soon and I am praying it will be a positive answer. Paige

I wouldn't take what that director said personally. You know she probably deals with a lot of people everyday. I'm sure she has had numerous students trying to weasle there way out of stuff so she has to be cautious. Of course she isn't right to catergorize everyone if that is what she did but it very well could be. Do what you feel is right. Paige

Sorry you are having to go thru this. If you are unable to tolerate the clinicals for LPN, why not go ahead and go thru the RN program and by the time you fininsh that you may be at a good point in your life and doing better and up to doing the clinicals. Don't give up on your dream. I am an LPN and the job I have had for the past 15 years was very physical, I am not able to work now. If you go on and get your RN license then you could have a better chance at getting a "sit down" job in the nursing field than LPN's. Now don't get me wrong there is "sit down" jobs for LPN's but usually you have to already had experience. It's just a thought. Paige

That is wonderful Sue. I hope everything works out great. You may just have stumbled into something very workable. Paige

Has anyone had this problem. I am having problems with sleeping too much. The past few days I have just feel asleep where ever I am, in the chair, couch or bed. All during the day I feel so sleepy, like I haven't had sleep in a week. There has been no change in my medication and I still sleep at night. Normally I am a light sleeper and wake up very easy. My husband said he has had a hard time waking me up and that last nite he couldn't arouse me at all. Today I was sitting in a chair watching cartoons with my son and I tried hard not to fall asleep but I did and woke up almost an hour later , fortunately my son was still sitting there watching tv. Any suggestions? Paige