Disability

[Ginny]

Last day of work after being here 14 years. Sad to say good bye but hoping to be able to deal with medical issues better.

Ginny

[Elle]

:grouphug: Take care of yourself! :grouphug:

[ihurttoo]

Dear Ginny,

That must have been terribly hard to leave a job you worked at for so long. I loved my job too, but also had to quit due to the IC. However, like you, I just didnt have a choice anymore. At least now, you will be able to rest whenever you need to do so. Also, if you are up all night in pain or because of multiple restroom trips, you can sleep the next day. Plus, you wont have to schedule Drs appts around work. It really will be the best thing for your health. After all, when you cant get the rest you need, it definately sends the IC into overdrive. Not to mention all the stress that most jobs entail! The stress also sets off IC flares. So, you really are doing the best thing for your health. Though, I know it is a hard step to take. I hope that the rest will help you feel better. Sending big hugs your way! (((Ginny))) :grouphug: Hugs, Amy

[tigger_gal]

I know how hard it is to leave a job after being there forever. I felt like that when my place of business went under and closed...
hugs to you

[Berkshire Road]

So sorry! Just this past October I had to leave a job I loved and had for seven years, bc. I just couldn't physically do it anymore. I'm trying to see it as an ending and a beginning. Ending of that career, and the beginning of ... who knows what the next adventure will be? Right now I'm just concentrating on trying to feel better.

[Ginny]

Thanks for your replies everyone. It's so strange being at home but I needed it so bad. Yesterday I was too tired to do anything but rest. Today is almost the same except I am getting on the computer to do simple emails.

Ginny

[MsB]

:pray: [B]Hi Ginny,

Sorry that u have to leave your job, I truly understand, having to leave nursing after 20yrs. But due to IC, we know our limits, and your health is more important.I got my disability after 2 years, it's not what my salary was but, it helps. God has been my strength during hard times, Hope He Will Be It For U. Will be praying for U. Stay encouraged.:pray:
[

Blesed in Bama/B]

[ICsmiles]

Hi Ginny,
I read your posts about the decision to stop working and that's exactly where I've been too. Jan 5 was my last paycheck for my part time job, and I have been in the process of closing my own business out of my home...
It got to the point where I was working in my pajamas all day except when I had to put on a suit and go to a meeting and pretend I was the competent, successful business woman.... and pray to make it there and back and hope I could last through the whole meeting.... I have the meeting on my calendar and have to be psyched up to go. My clients never knew how bad it was, but they knew I had to excuse myself and borrow the key and go to the restroom a lot.
I used to be the fast-paced, confident career woman breezing in and out, going from place to place... and now just getting my clothes on and going to the grocery store is a major outing...
Finally, in January, I was in the bathroom and crying one more time and I looked in the mirror and said - "nobody has to live with this much pain and take so many medicines just to function, and have to keep working every day. You are EXCUSED. It's okay...."
It was so hard to admit I am THAT sick. I thought I would get better, not worse.... I've been to all the top IC doctors within 6 hours drive time.... It's cost thousands of dollars and hours with travel and hotels and hope and prayer and then crushing disappointment.... and I'm worse now than when I started my journey in 1997... So, 10 years after diagnosis, i am stopping working and filing for disability...
I am so grateful for this site and the support that is available here.

[Moonheart]

Hi Ginny,

Finally, in January, I was in the bathroom and crying one more time and I looked in the mirror and said - "nobody has to live with this much pain and take so many medicines just to function, and have to keep working every day. You are EXCUSED. It's okay...."
It was so hard to admit I am THAT sick.

Oh goodness! I can relate to this so much!!! :help: I've been going through the same thing. :(

[Elle]

I think many of us who have applied can definitely relate! The amazing thing, at least for me, was after getting over the initial depression following my approval (yep! It took so long to get approved, but once I was , it actually really depressed me to think that I was sick enough to be approved!), it was actually like a huge weight lifted off of my shoulders! We were lucky in that our family wasn't dependant on me having an income. So, now that I've been approved, we've been able to do some of the things that we hadn't been able to do for a long time (financially, anyway). I know it's hard right now...I remember going through the same type of thing you're going through right now. I just want to let you know that it will get better! :) :grouphug:

[ICsmiles]

thanks for your replies Moonheart and Elle...
it's so nice to turn on the computer and find out you have been "heard" by another IC-er. :angel:

[maryla]

Thank you all for being here. I can really relate to all of what you said. I think the biggest hurdle for me was getting over the stimga that our sociaty has placed on "people with disabilities" they look upon us as we are some kind of freaks that use our goverment. That's how I felt anyway applying for disability. And basically that's how I am being treated.

I still have not been approved as yet. I have been waiting on an appeal court date, my first one actually. I applied over 3 years ago and my appeal was sent Nov of 05.

What really gets me is that, I have paid in to the system for so long, Now I have to fight and "prove" that I'm disablied. I know that there are those that do take advantage of the system, I just hate the fact that we are ALL judged that way! It's just all so exhausting to have this issue too, when we are dealing with IC and/or other illnesses as well.


I'm praying for a court date SOON.........I just get on my soap box sometimes.....Thank you for listening!

God Bless you all,

[ICsmiles]

Wow, 3 years ... I am learning how long this process can take, and praying for the ability to not take it personally if my disability is denied and I go through the appeals merry-go-round.
Sounds like the application process is just about as difficult as working in a stressful job. ... only at least we can pee whenever we need to!:lmao:
thanks for sharing your experiences.
Sharon

[ihurttoo]

Dear Sharon and Mary,

I know it is hard to give up working. Our identities get so wrapped up in our careers. It is a tough thing to admit to yourself that you cant keep doing what you have always done. But, you are both doing the right thing. Though I dont know either of you, I know that no one makes this choice easily. Everyone who files does so after a long time of thinking about it, and trying to hedge their bets on the newest medicine and whether or not it will restore their health. Meanwhile, we all trudged on thru countless meds and therapies, always believing that the next one would be the one that would restore our lives. If we were able to do so, we would all rather be working.

But, when we cant work any longer, we deserve the money we have been paying into the system for this eventuality. We didnt sign up for this disease or this life, but we got it anyway. So, when we reach the point that our bodies say, "ENOUGH!!!", we shouldnt have any guilt about collecting what we have put into the system.

It was very hard for me to do it too. I waited 4 yrs after I left work before I applied, all b/c I kept thinking the next med would work. Well, obviously, the next med never did. But, just b/c I have lost that part of my life, doesnt mean I should lose my home, and a huge chunck of my income too. I mean, it isnt like we are asking for something that we arent entitled to! So please dont feel guilty about this! 'kay? Besides, if/when the day comes that there finally IS a new med that really does help us, we can always go back to work then. There is nothing that says that just b/c we are disabled now that we will be forever! :)

I hope you are both approved very soon. The waiting is really the hardest part.

Many hugs to you both,
Amy

[maryla]

I just love your posts. You can articulate very well. Actually I just nominated you for your writing abilities in another post. (PR) I hope you don't mind.

Yes, SS is sooooooo draining. We don't have a lot of energy to begin with, at least I don't. Sometimes, I wonder if they (SS) actually want you to just give up? or if it's our lawyers? The longer we wait the more money they get when we do settle?

It's all sooooo frustrating. But one thing they don't know about us IC'ers we are strong people willing to fight for what we deserve, and not throw in the towel!!!

God Bless You Amy,

[Portia17]

I HAD A GREAT DISABILITY LAWYER AND GOT MY SSD IN 7 MONTHS WITHOUT SEEING A JUDGE

THEIR WEBSITE IS WWW.BINDERANDBINDER.COM OR CALL 1-800-66-BINDER

GOOD LUCH

[Ginny]

I thought I would give an update. It's been about 6 weeks since I stopped working. The first month was hard. I was really lonely. Not use to being by myself every day. It's starting to turn around now. I can get things done during the day that I had to do at night while I was working. And all these doctors appts. I recently had a tumor taken out of a lobe in my lung so every nodule is looked at closely. Tests and tests. It keeps me busy.

I went to the S.S. office. The guy taking my info said if he had all the illnesses I have he would not be working. I realize he does not make the decision though.

I do miss work but my health has to come first.

Ginny

[Leslye]

:smile tee Hye, to All Old & New.! I have been so busy(trying to get my disability) & Very Sick(IC,fibro,& Pemphigus). I have MISSED you All So Very Much!! I was FINALLY approved for my Full Disability!!! :dance: My question is,I have 2 kids,how much of my lump sum can they get back & how do they figure how much they get a month? I have several friends who one has 1 child & he recieved half of her lump sum back & half of what she gets per month. My other friend has 2 kids & the got back half of her lump sum divided by 2 & half of what she gets per month divided by2. ANYONE, who can give me info on this I would be SO GRATEFUL!!:help: I have recieved 3 different answers! 2 of which came from the Social Security office!!
Thanks Again,

[maryla]

I don't have a clue, but congrats on being approved. :woohoo: Now you play the waiting game again. One of my IC friends was approved in April, and didn't receive her money until NOv, Dec of that year! The whole system just sucks! I've been waiting on a hearing for about 1 1/2 years!!

But Congrats again.:woohoo: :woohoo: :woohoo:


I'm praying it won't be long until I post here with the same message!!!!!!!!

Blessings,

Oh, what is pemphigus?

[Leslye]

The Best way to describe Pemphigus is it is NOT contagious, it is Lupus of the skin were healthy cells attack other healthy cells. The places are usually on my legs(so far) but get between your fingers,toes,ears etc...anywhere! They start out looking like a small red bump(flea bite) then they form what looks like a water blister(a bad burn) they grow in size anywhere between a penny nail to quarter size. After they pop they look just like a ulcer/burn(very painful) I keep antibiotic cream on them to keep out infection. When the breakout is severe I take Predisone(steriods) I hate taking steriods so try to take them, Only if I must. Of course this is another disease that I have that has NO cure. SO far I have been diagnosed with IC,Fibro,Chronic Fatigue Syndrome,IBS,Migraines,Vulvadynia, & last but I am sure not the last Pemphigus. Thanks for asking & responding to my post. I also appreciate the Congrats! It took me 3 yrs to get my Disability & the Judge found me disabled since May 2004. It is ABOUT TIME!! Thanks Again, hope you are doing well!

[maryla]

Sorry I spelled your name wrong the last time. It took you 3 years to get a check from your state and you were approved 3 years ago?

Also, I've been having crap with my ears for about 2 years now. I'm wondering if that is what I have? The pep stuff, They just ich something awful all the time, and I have red bumps too and right now they're all dry and flacky on the inside like my skin is constantly peeling? I go to my primary doc this Friday, I'm going to ask him.

Anyway congrats again!!!

[Leslye]

It took me 3 times to get approved for disability!! I got a lawyer, & the found me disabled from May 2004. I got back pay from then until now!! I get my first check this month!! I am trying to get everything for my kids now. I have 2. I am being told several different things on what they will get. People are telling me that they have me down as getting SSI. They State office in Austin said that it does'nt look right to them & they are sending me the forms to Appeal. A lot of work that I am SO tired of messing with!!! That is why I can not work a job! I do not FEEL good, nor do I feel like messing with All of this! But anyway, what can you do?

[Elle]

I was just thinking about you and wondering how you're doing. ...Just wanted to let you know that someone who has been where you are is thinking about you... :kissing:

[maryla]

I hope everything gets settled with you right away. Yes, it does suck to have to keep waiting with compounded stress of paying bills, and everything trying to get settled. I pray it's soon for you! Keep us posted on how everything turns out!

God Bless you and your family on this Easter Day and all through the year!