Received my SSD Denial letter

[dbdab]

I received my SSD denial letter on Saturday. I hate this. I'm doing everything I can to stick with it, but I feel angry and resentful at some point everyday.

I'm going to begin the appeal process this week. My letter said they found I had some restrictions, but that I could still do the type of work I did when I was 20 years old (18 years ago) and worked as a Shift Supervisor at Blockbuster Video! They really are pathetic. That job was stressful and very physically demanding and by the way, doesn't even exist anymore!!! I feel like we live in such a horrible world full of corruption and lies. Our government cares NOTHING about us. They only care about serving their own purposes...getting elected and getting paid by the people. I don't want to be here anymore. At this point I'm only living to be here for my kids and my family.

Also, my Vulvodynia has gotten worse over the last few months and my depression is really severe. I can't imagine what I will be like after I get through this dreadful process. I already feel like a shell of my former self. Anyway, I don't mean to be so negative. I am just really scared and don't feel like there's anything I can do to make it better. Well, being able to come here where everyone understands helps me some, so thank you to everyone here for always giving support. Deb

[ICNDonna]

Sometimes I think we need clearer instructions for applying. Step 1 is the original application, Step 2 the routine denial, and Step 3 the appeal. I think denying first applications is routine (it discourages a lot of people, who simply give up).

One thing you can do is to consult an attorney --- they don't usually get anything if you don't win --- and some have found that's the only way they get benefits.

The good news is that when you win, it's my understanding that you get retroactive benefits from the date you were first denied (will somebody correct me if I'm wrong!). The attorney gets a percentage of the retro.

Donna

P.S. I noted that you are taking Aleve --- it's a problem for many ICers, including me.

[dbdab]

Thanks Donna. Yes, I actually already have an attorney and knew the harsh realities going into this. I thought because I knew exactly what they would do with denying me first time out I would be ok when I got the letter, but it still just upsets me that they treat people so badly when they are already struggling through so much. I appreciate the support and thanks so much for the encouragement. I feel like giving up everyday, but then I remind myself of how I tried twice to go back to work since I left my last long term job in 2005 and both times I had severe worsening of my IC symptoms, so then I come to terms again that this is my only option. I go through this gyration over and over again. I feel like I'll never be at peace with any of this. I don't know how to live my life anymore because it's in the hands of the government right now. I'm 38, I live with my parents now, since I went bankrupt and lost my house in 2007. I have no money, no health insurance and no job. I am a single mom, but luckily my kids are 21 and 22 so I was able to get them this far before my life totally self-destructed. My state denied me SSI within 2 weeks of applying for SSD, so they were of no help to me. My lawyer says I should try to go to a therapist, but I have no money. I can barely afford my urologist and as it is I see him once or twice a year. As you probably know, there's not much more he can do for me as long as I'm managing my IC and now also Vulvodynia symptoms. Anyway, I'm trying to figure out some way to find hope which is really difficult when it is so clear that things are just not ok. I thank you again and everyone here. This support is my life line. I would have been so worse off if I did not have this group for guidance.

[amaranthe]

I am really sorry this happened, (though not at all surprised). I like the way Donna put it that we should all just accept that as part of the process. (Although I know it still hurts.) I know most of us had been told to our face by at least one Dr. along the way that they basically thought this was "all in our heads" and made to feel crazy. Then, somewhere along the way, most of us get abandoned by at least part of our friends and family and many are lucky if they aren't left by all of them. Then, we deal with the pain, freq, urg, every day, as well as the side effects from all the different meds, and have to fight tooth and nail for pain managment, only to be called drug addicts by everyone once we get it. Then, for most of us, having some govt worker who has never even met us sit in their office and call us liars, when it was ALL we could do to swallow our pride to file for SSD anyway,......well, it's just no small wonder most of us are depressed!!!!

I cry this as I write it. I cry for you and I cry for me. I cry for everyone that has had this happen. But, I can tell you this....most of the time good really does overcome evil in the end. Most of the time wrongs really are righted. Eventually, the weak really DO become strong, (if not physically, then mentally.) And eventually, most ICers DO win their cases when they make it in front of the judge. Why? Because we arent liars or fakers and when a judge sees our file and sees us in person and we are there in person to explain what IC is and what it has taken from us, then the judge has to ask the jobs expert what job we can do where we can sit, stand, lay, and sleep as needed and also where we can call in sick several days a week or month and not get fired, OH, and we also need one where we have constant bathroom access and wont be fired if we go LITERALLY every 5-10 min when we are flaring, (which for some of us is every day of our lives.) And ya know what? It isnt our imaginations! There really ARENT jobs out there for a severe IC patient (as described above) to be able to do! And THAT's why we win there!

So, you dry your eyes, and I will dry mine. You are gonna get thru this and I will be here to help you thru. WE will be here to help you thru. Yes, Saturday was a bad, bad day. But, you know what, in a few months or so, I will be reading a post in this section from you telling us all about your hearing and how you WON! And, THAT will be a very, very good day! Until then, you stick close, 'kay? Were here for you!

Sending my support and hugs,
Amaranthe

[leelee88]

amaranthe, You sure have a way with words!!

Most people get denied the first time and they do this to discourage people.. I was looking at the online application and just broke down! It was that overwhelming. I pray that your lawyer can help you appeal this process and you get what you deserve!! ((hugs))

[dbdab]

Thanks Amaranthe! I wasn't surprised either. Just resentful and angry and I've never been an angry person, just the opposite. It used to take so much even for me to get a little angry. Now it consumes me and makes me feel all the more like I'm not me anymore. You have expressed the feelings this disease brings so well. I couldn't have said it any better and what you said is exactly what we deal with. I have had my share of doctors trying to call this anything other than what it is. Can't remember how many times they stretched my urethra before I was finally diagnosed, but I can remember the day after almost two years of experimental treatment being told by my uro that he, "Doesn't know what to do with me anymore." So, he stopped trying. Luckily, I found from someone up here that I was only 90 mins away from Dr. Moldwin and he is a god send. If all doctors were like him, we'd all be better right now. In 2007, I collapsed at a restaurant after pushing myself too hard for 8 months in attempt to return to full time work and was rushed by ambulance to a hospital. They had been trying to revive me for about 20 mins, I finally opened my blurry eyes to find the nurses and doctors trying to figure out why I had so many pills in my pill box and what I took them all for. I did feel like they thought I was some sort of drug addict and that was how I ended up at the hospital. Only 2 out of the 7 medical professionals who were attending to me that night had even heard of IC and they didn't know much about it. I had to explain it to all of them. It's humiliating and exhausting. The few friends I had dropped me like a hot potato because as the last one who I thought was my closest friend put it, "she was tired of my drama." I do have my family though and they will never turn their backs on me. I will dry my eyes again and again today and every day until this is done and I will stick close. I hope you've dried your eyes too. Thanks again for your kindness and support.

Hugs back,
Deb

[dbdab]

Thanks Ronda! I am going to hope for you and everyone else as well. I appreciate everyone's kindness.

[curlycue]

May I ask what state you are in? Does it matter? Good Luck

[Preacher-Girl]

Don't give up! I know this process is extremely frustrating because I went though it. The denial is part of the process and as long as a lawyer is doing the appeal you should be fine. It doesn't feel that way but I am confident you will get it. Then you will be able to count on that money every month. I have had mine for about 9 years. As long as you continue treatment and seeing your doc they don't take it away from you. I have never heard of anyone's being revoked. You will just need to do a tiny, 6 question update every few years. It's nothing! And I am awful with paperwork. So, you have many better days to look forward to. And if you ever feel well enough to work P/T...you can! It's allowed for a specific amount of money every month and they still don't take it the SSD away from you! On top of that, you will then have Medicare. That is how it worked for me.

So, just think. When that retroactive check comes in, you will be able to pay some bills, get some meds, see your doc, and do a little shopping.

There are better days ahead for you!

[dbdab]

I live in Connecticut. I don't think it matters as this process is at the federal level, except for SSI. My state denied me SSI, which would have been temporary help until I got the SSD decision. I wrote to my governor, state senators and reps when I was denied SSI, but they are useless. I've also written to the president twice, but I doubt he has any room to deal with this. It makes me so angry and frustrated that our government is in such complete disarray, divided in their corners amongst their selfish political parties and the President must fight tooth and nail to make any changes which I think he could actually do if they would just put their enormous egos aside and unite for the good of the American people. That will never happen, so my only hope at this point is that he has his own plan that cannot be blocked by the rest of our corrupt government. This process has turned me into someone I don't recognize at all.

Thanks so much Ruth. I appreciate your support.

[Preacher-Girl]

The good news is, the SSD process has always been this way no matter what the government looks like. I remember being very angry when I got denied and was swimming in paperwork. I was also somewhat embarrassed. It wasn't necessary...but I was. The anger isn't worth it because I got it anyway. I got it because doctors thought I had depression. I actually had sleep apnea. I was very young, only 28. At that time doctors and everyone else really thought depression was kind of a made-up illness and I got it anyway! The good news is you have a lawyer. SSD hates lawyers.

Godspeed. I believe you'll get it.

[Mare]

HI Deb,

I just want to add my support to your post. I went through this process and was denied with two separate letters. But I finally got the hearing date and was approved at the hearing. Everything that everyone has said here is so true. I understand your frustrations and feelings. I am single and the wait was very frustrating, depressing and financially devastating. But please know that you are being lifted up and supported by the many people who are here on this website and also those who have come before us and applied for the disability.

By going through this process, you are not only fighting a battle for yourself. But you are helping to set the foundation for those disabled IC patients who will apply after you. Take care, and try to take things one day at a time.

Warm regards,
Mare

[dbdab]

Thanks everyone for your support. I appreciate it more than I could say. Mare, you said the exact right thing. I find strength, not in fighting for myself, but in fighting for the cause for everyone and also for my family. I keep telling myself that I have to do this and I know I'll probably start to be able to heal once I win the case. I just wish I didn't feel like life was a ticking clock. I've always been all about not wanting to waste time in my life and I feel like I'm being forced to do just that. I'm going to do the best I can and all of you do lift me up and inspire me. You are all so brave and caring and I only hope that I will have the strength to do some fighting for change with this. I have already written the president twice and I plan to continue to flood them with messages that this application process needs to be part of the Healthcare Reform plan that he's currently working on. I don't know if I'll be able to effect any change, but I have to at least try to channel this anger and resentment into something constructive because if I don't, I fear it will eat me alive. Thanks again everyone!!! I will keep you all posted.

Hugs,
Deb

[dbdab]

P.S. Actually, Preacher-Girl you reminded me that I did mean to ask if those of you who have been on SSD for a number of years can share more what happens after you get it. I wondered if they are always checking up on you, watching you... what you're spending money on, if you're going on vacation and if they think you're doing things that shouldn't be possible if you are truly disabled will they disqualify you from continuing to receive benefits? Like, I went on vacation Sept 2008 to Walt Disney World with my family (my wonderful kids paid for it for me as a Mother's Day gift.) I did push myself and was pretty much sick the entire trip, but I kept going and trying to have the best time I could no matter how I felt. When I returned I was bed ridden and in some ways I don't feel like I've ever fully recovered, but I'm willing to do that because I refuse to let this disease completely stop my life and keep from enjoying what little I can. Anyway, so if anyone is up for sharing what happens after I would appreciate it so much. Thanks again!!

[kate118]

DBDAB,

DON'T GIVE UP!

I have been in your exact shoes. Went all the way to trial and won (with a useless lawyer who took 5K).

Eventually it will all work out.

You are not going crazy with your thoughts....The social security disability process IS screwed up and needs revamping as much as the tax code does.

Keep your head up and don't let anyone pull you down. You will get there.

Much Love,

Kay