23 replies to this topic

[truman]

Well, today was the day. Got up at 6:30 this morning, itching and full of welts. I took the new prescription and the itching stopped within the hour but threw me in total oblivion. Around 9:30, I went into a colitis attack. Couldn't leave the bathroom. I tried taking half an Imodian and that did nothing. My friend came around 12:30 to take me to the office visit. Still couldn't get out of the bathroom. He handed me the phone and said to call and see if I could postpone. I called, explained and they said to get there when I could.

An hour late, we went. It was a pretty tough lady doctor. She asked why I thought I couldn't work. I tried to explained the limited use of my arm and recent amputation and as the conversation went on, my feet and fingers slowly turned a deep blue/black. At that point, I said look at my hands and feet and her eyes went wide open. I explained that office atmospheres similar to this office cause this to happen, which is why I lost the toe. She asked who did my house cleaning. I told her no one, I had to let the housekeeper go because I couldn't afford her anymore. She examined my bag of medication and reminded me that I was to bring only those I am presently using. I told her that is exactly what I did. For each bottle she picked up, I explained it's use. She questions the operation; was disability aware I had one? Yes one, but they don't know about the second in January and the third coming up for a skin graft.

Now, time to stand up. Walk for me. "Why do you walk on the outside of the right foot?" I explain because there is no large toe to support me. "Okay, squat." Haven't been able to for the last six years. "Stand on the heels of your feet." Can I hold onto something? She explains that colitis is not covered under the CREST criteria; I add I know, it was just an added bonus.

"Why do you use a cane? Was it doctor prescribed or on your own?" I use the can to support me going up and down the stairs; on my own with the consent of my doctor. "Do you use drugs?" I explain I have enough meds to not worry about "using" drugs. "I don't want you to undo the bandaging, but why is your foot bandaged?" Because I had my toe removed and have not healed yet. She gets up and undoes the buttons on my shirt to examine the tightening of my arm and the beginning on the next arm and sees a morphea patch. I explain there is one on my stomach as well but she doesn't care to look anymore. She tells me to put my shoes back on and leaves the room and closes the door.

I'm sitting there for about 15 minutes, and a nurse comes in and asks why I'm still here, that the examination is now over. I leave and make it home in time to hit the bathroom again.

So, I guess it's basically a toss of the coin, because I don't know what to make of it.

What your opinions?

[Snowbird]

Hi Tru

Well, I don't know what to make of that either.....perhaps she seen enough to convince her you should have the disability, it sure is anyones guess? I think if it were me, I'de call the office back and try speaking with the nurse....just to innocently inquire about whether or not you might need to do anything further since you were feeling so poorly, say that you may have missed something (you know the old saying, honey attracts more flies than vinegar, etc)? I would just say that I never needed to do this before and that I just wanted to be sure I didn't need to do anything else... and if she could give you any little guidance, you would really appreciate any help she could offer, like how long it takes for you to hear back from her or who, etc??

Good luck!

[Sweet]

Grrr I just wrote a big post and lost it!!! I don't know how I do that.

Anyway, your doctor sounded like a real gem. (NOT) but surely with all that she saw she should rule on your side. I hate the thought that our future lies in their hands.

I received 2 new packets of info. from SS yesterday to fill out again. It's so frustrating, because it's all stuff I gave them before. It's like "do they read anything you give them???" I called once yesterday and today left messages as I have questions about the packets. No one has called me back and they need to receive the info within 10 days. The information is so redundant, I swear they ask the same questions 16 different ways. As you can tell I have no tolerance or patience with ignorant bureaucrats. LOL Hope they are not reading this post!

Good luck to you tru, keep me posted.

[LisaBulman]

Tru,
Try not to worry too much. When I had my appointment withthe disability doctor I was so nervous. They assigned me a doctor for my area. I go to the office (which was out of an old house) and the dr was probably older than the house itself! She ahd to have been about 80, at least. She looked me over, asked a few questions, had me do the same stuff as you and that was it. It was really weird. I had no clue what to even think. So a week or so goes by and I happen to be driving and I come across the office where my exam was and there is a for sale sign out front and the business is closed! Now I think I'm doomed. Well after two appeals and a lawyer (not having to go to court) I was approved. Think positive!

Hugs,
Lisa

[nan]

Truman,
I am so sorry that you had such a bad experience. I was so lucky! My physician was so compassionate. The fingers turning colors freaked him out. I don't think it will do you any good to call the nurse. They aren't allowed to tell you anything. I know that the doctor that examined me said that he had nothing to do with the decision he just wrote down what he observed. Good Luck!
Nan

[bmw]

Hi Truman, I don't get on here very much but I read your post and and I'm very sorry that you're having such a hard time in getting you're disability. If anybody deserves it, you do! I do have my disability and received it without all the hassel that you're receiving. Where do you live? Keep in mind that all of us are with you and are pulling for you! Birdman

[truman]

Thanks to all fior your input.

Birdman, I'm in Jersey.

It did kind of freak her out when she saw the color of my toes and fingers; she just kept staring.

What will be will be. If I get turned down, I have to go the other route and get a lawyer. That way, they'll do the work and I won't have to worry so much. Maybe get rid of the hives too.

[Shelley Ensz]

Hi Tru,

I think it'd be a definite plus to have turned colors at such an opportune time, and to be hobbling minus a big toe as well. I'm sure many people have acquired disability without such obvious symptoms for show-and-tell. But even with a "good" appointment like that, remember that the system is still basically stacked against everyone who is applying for disability. I've even heard of a person in a long term coma that was automatically denied on first application. And my mother received her approval letter for disability six months after she died.

The point is, you could have had a lethal coronary in their office and still possibly get an initial denial; it's nothing personal, just the way the system works. So rejoice if you are approved right away and immediately appeal, if you are not.

Also, CREST is a form of Limited Scleroderma. Limited Scleroderma means that the skin involvement, if any, is limited to the hands and/or face. But otherwise there isn't anything "limited" about it, as it can affect any of the internal organs. And it can cause significant gastrointestinal distress. So I wouldn't say that is "extra" and I would have concerns that perhaps they aren't considering you under the Scleroderma criteria for disability, which they certainly should be.

[Sam]

I can't believe she said having colitis is not a criteria of CREST. Well My gastro told me that me having colitis is caused by CREST. So is is right hmm I would say my gastro doctor. I'm not a big fan of social security doctors they are a dime a dozen. And do they really know what scleroderma is. I bet she had to look it up.. Sorry to say that. I'm sorry that you were having problems this morning. But I am glad you got in and like Shelly said a great time for you fingers to turn colors. Let us know what happens. Take care, Sam

[Kamlesh]

Hi Tru,
I am really shaken up reading your story and I am really upset with the systems. For our whole life, we have paid so much money in taxes and when we need help, can’t get it.

I hope you will hear positive outcome soon.
Please take care of yourself my friend!

[truman]

Shelley:

I have said many times, I am extremely grateful as to the extent of my illness at this time. When I read on this forum, and see others in my life with life threating illnesses, I count my blessings every day. Yes, you are right, it is those people who are denied as well. Such a shame, our system. I was so saddened by the fact of your mother getting the approval after her death. I am also well aware of some who get disability based on false symptoms as I know a few of them myself.

I am also a strong believer in doing what is right, what our faith teaches us and to always treat others fairly, equally and with as much respect as you would expect yourself. I do so, even if that person is negative, nasty and hurtful until it affects me, then I walk away. I've always relied on my faith to show the way and if it is to be, then it is.

All of the special friends on this forum are a circle on connected friends, no matter how far away. I guess what I'm saying is for every bad experience I've had, I've walked away with something positive that I carry through life. I never would have met such wonderful friends here, had I not come down with the illness. This forum has taught me to grow, to "admit" I have this illness not only to myself, but my friends and family as well and not only that, but to spread the word about this illness.

[debonair susie]

tru,

I "thought" I had posted on your thread earlier on, but....

I only wanted to let you know I'm thinking of you and thinking positively about your disability acceptance.

No doubt, once this is all done, you'll be rid of your hives and not have to medicate... for THAT, anyway... fingers X'd!

I'm sending Huge, Soft Hugs to you!

Susie

[smac0719]

Tru...you are in my thoughts. I'm sure that was difficult experience, but I will have faith that things will go in your favor.

Peace and blessings..............

[Alice02]

Hi Truman,

I agreed with Shelley, I also heard from an Social Security‘s attorney that they denied a person who was on life support. And their reason was he might still live through it. Just don’t give up and keep on trying and if you get denial, I think the best way to handle it is to hire an attorney. I'm not sure if you already submitted your medical records, that something can really help you. And don’t worry too much about the doctor. I’m going to call for appointment with SSA, and I’m traumatized with whole issue.


Much love




Alice

[truman]

My boyfriend told me to call SSA yesterday. My caseworker's name and phone number were listed on the doctor appointment letter. He said to call and tell them of the other two operations that they are not aware of.

Calling SSA here in Jersey is like placing a call to a non working number. I called and got a taped message from an individual who does not identify himself or the agency and just tells me to leave a message. I left my name, case number, phone number and the reason for my call. I received no call back. I will now call this number and leave the same message every day if necessary, until I get a call back which I do not believe I will.

[truman]

The caseworker from Disability called me backed today. He was very pleasant and said he was glad I called him with the new information about the second and third operations. He said he was also going to follow up with the surgical unit, as they had not supplied him with their information.

He seemed caring.

[Margaret]

<<The caseworker from Disability called me backed today. >>

Hi Tru ,

That is good to hear....especially since you said he actually seemed to care. Best wishes that everything goes through OK.

Take care, Everyone.
Margaret

[Annie N]

I'm glad he called you back and actually was caring and working on your case. I'm sure he'll see you really deserve to have your disability.
Sending Good luck wishes your way.
Annie N.

[Peggy]

I've been down and out this week so I am late in posting to you but it still comes with the same feeling. I am so sorry you have to deal with all of this. You should have been approvede right away with the diagnosis of sclero. When I applied my worker told me that it was listed as one of the diseases that should have an expedited "compassionate" hearing for approval due to the nature of the disease. I really hope that you will receive an approval and not have to go through an appeal. My thoughts are with you and you hang in there. You have a great disposition and attitude about it and that's about all you can do now.

Warm hugs,

Peggy