Social Security Disability and lymphedema

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Social Security Disability and lymphedema

Postby coyote » Fri Dec 01, 2006 2:27 am

I have good news and bad news....

I am rather numb about them both just now:

The good news is that I have been approved for Soc Sec disability only 3 months after I applied!!! I got the news this afternoon. Wow! Was fully expecting a fight on my hands because most people are turned down the first time around...and I was about to lose my house, so the news couldn't have come at a better time.

I think my documentation of how the lymphedema affected me physically, emotionally and cognitively really helped. I think it pays to ask for an extension like I did and take some time to answer those "ADL" (activities of daily living) questions thoroughly. I did not use an attorney.

The bad news is that my father has been seriously ill and Thursday we found out that he has congestive heart failure and small cell lung cancer which metastasized to his liver. They are going to test to see if it has gone to his bones or his brain as well. It is a fast-growing cancer. Guess only a third of lung cancer patients get this form. The oncologist gave him 6 weeks to live if he doesn't do treatment and 8-9 months if he does.

My dad has spent the majority of his time these last couple of weeks worrying about how the the family business was doing in his absence. I feel badly because I was his successor in the business and there is no way that I can jump back in it and take over the business in my poor health, so it will have to be liquidated.

So, if anyone wonders why I haven't been around much in the groups or here, now or in the near future, this is why. My family is having 3 family crisis right now (it was 4, until I got the news that I'd won my disability claim!).

Hope all is well with everyone, especially you Pat, I know you have been having more than your fair share of health problems!!!

Best wishes,

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Postby gottahavesun » Fri Dec 01, 2006 12:52 pm

Hugs to you Julie! Sorry to hear about your dad. I hope his remaining time will be comfortable for him and all of you.

Please don't worry or feel bad about the family business having to be liquidated. You would be the successor if you did not become ill and you had no control over getting this illness, so it is not your fault about the liquadation. The business was just that "a business" it is not family and your family wants you to be as healthy as you can be, even if that means you are on SSDI instead of keeping a business going. Please don't stress over this situation, but enjoy your dad's company instead.

I'm happy that you received your SSDI approval too. It's a big weight lifted off of you isn't it? As I wrote when I was approved for SSDI the first time thru documentation on our daily activities is key to getting the approval and I hope others follow this path as well.

We are always here when you need to chat, so don't feel bad that you have been MIA as you are there for your family at this time.

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Postby patoco » Fri Dec 01, 2006 10:29 pm

Hi Ya Julie :)

My heart just goes out to've just had far too much to deal with this year and I wish there was something I could really do to help.

Just know that you and your family are in my prayers each day :!: :!:

Also, want t second what Lisa said. Ya can't blame yourself hun, I know you have done your absolute best...going way beyond the call of duty.

I worry too about what you have said previously about all over swelling and what sounds like possible pleural effusions.

There is a lot you can do like breathing exercises, self decongestive therapy etc...but be sure to have periodic xrays of your lungs to keep check on possible fluids there.

They just removed 2 1/2 liters from my right lung and I still have 1/2 liters in my left. Thing is that the pleural effusions can get out of hand before you even realize it too.

Been away to conventions and more recently been in the hospital for several weeks so I am way way behind on everything. Hopefully, I can still come up with some more helpful info on all over LE.

Hang in there my friend....remember, we all with ya :wink: :!: :!:

Pat O
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Postby silkie » Sat Dec 02, 2006 2:11 am

Hiya Julesssssssssss

Hugsssssssssssssssss you my friend

I am so sorry about your Dad

You are im my thoughts and prayers.

knowing you Jules this time you and your Dad will have will be special

I am so glad you got the DLA hun.

To be honest i am not suprised you got it first time

you are good as putting things into words and explaining this condition

You have my e mail hun if you need a chat anytime

Take care fo yourself to especially at this time dont neglect yourself

and love to you my friend

Silkssssssssssssssss xxxxxxxxxxxxxxxxxxxx
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Postby coyote » Tue Dec 12, 2006 12:36 am

Tried to respond to this once before and got lost in the process...thanks so much for your kind, loving words Lisa, Pat and all are the best!!!

My dad is going to start chemo Wednesday. He finally made up his mind to go for it.

Pat, I have read that you are finally getting the treatment that you need to wrangle the LE under control: Such a good thing!!! Happy for you.

Snuck in to see my LE therapist during her lunchtime when I took my dad in to the hospital for an MRI and she talked a lot about the lipedema and was thinking I should really start approaching treatment focused on that. I am concerned about the protein issues for diet because my albumin has been consistently on the low end of the spectrum despite a high protein diet. I know a lipedema diet is a low protein diet.

My LE therapist also talked about full body compression....without interruption except to shower. I've known full body compression was on my horizon...I just didn't know how it was going to happen because of the cost.

Pat, I am also very concerned about the all over swelling, too. I haven't seemed to have as many signs of pleural effusions lately, just a slight wheeze upon waking. Deep breathing really, really helps that, as well as the LE exercises and MLD.

My thighs have ballooned out big time since all of the family crisis/stress has happened, though. If I weren't on AB's I'd have one whopper of an infection right now! Kind of have a bit of one anyway.

I really kind of think I have to have a really serious health crisis before the doctors will take notice of the seriousness of my condition. They do not want to do x-rays when I have pleural effusions. I have requested them and have been ignored.

I'm not even getting my B-12 shots at this point. Guess I need to develop dementia again to get definitely get lesser quality of care without health insurance.

Hope all is well with you all!!!

I am doing okay, all things considered.

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Postby MaureenKennedy » Tue Dec 12, 2006 4:44 pm

I am happy you won your social security disability claim!

Speaking of the ADL form, does anyone have the link to where I typed out instructions on how that form should be completed for social security disability. I need to copy that info for someone else who needs it? Thanks
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Postby gottahavesun » Tue Dec 12, 2006 5:13 pm

Hey Julie,
Feel for you on the all over body compression--I know I'm heading that way too--the LE is now in my neck so I can only say I don't have it in my face right now(knocking on wood that it stays that way). I'm deligent about doing management and it just creeps into any area that isn't compressed. can't really find a way to compress my trunch besides having a girdle on. I started wearing a really stretchy bra and it helps me not develop pockets around the bra line that are painful, but it does allow me to swell more freely in that area. The muscle spasms I'm having now in my back, neck and down my arms really limit my ability to do things these days. I was really upset about that for awhile but am now learning to live okay with it.
Oh, another thing I wanted to share is that my doctor did a Vitamin D check on me and the levels are suppose to be from 50-80, well since she has been testing no one has ever had it as low as me(wow that is the answer I get on everything I get-lol), it was under 7. I'm now on mega dose of 50K once a week for 4 months to try and get it back up and then I'll be on a maintance dose. Vitamin D affects pain, feeling tired, mood, memory, etc.... so I'm hoping it will help once I get my levels up. Won't solve all of my problems caused by le and the meds I'm on but will help me feel better. Won't hurt for everyone to get this tested when you go to the doc next.
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Postby MaureenKennedy » Tue Dec 12, 2006 5:17 pm

Is vitamin D also calcuim levels? I have had such a mood swing since just before being diagnosed with lung cancer, and blood tests show calcuim is high (which is a marker for cancer). My mood swing is to being happy all the time now! This has been a mystery for me, since I have been real down like chemically depressed for over a year before this time, inspite of antidepressants being taken daily.
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Postby gottahavesun » Wed Dec 13, 2006 12:47 am

I was told that if your Vitamin D is low your body would have a hard time processing Calcium. However, your Vitamin D might be too high, so you probably want to ask your doc if they tested your Vitamin D levels, since I know my doctor will be closely monitoring my level to make sure it doesn't get too high.
Good luck to you Maureen.
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Social Security Disability

Postby lleggs1371 » Wed May 16, 2007 10:26 am

It is so amazing as to how someone can tell you that you are not sick and you can go to work. It is true that you may be able to work for a little while, but what employer will allow you to take off when you are feeling tired, owrn out, severly fatigued, and so on. I wad denied twice before getting approved, and I had to get an attorney. I will say for anyone is not to get discouraged and keep trying. No one knows how you feel. LE has truly taken a toll on my physical state as well ad my mental state. Keep your heads up and we all will rise.
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Postby bouncedrealitycheck » Sun May 20, 2007 10:58 pm

You and your family are in my thoughts and prayers. I know I'm still kinda new to the group, but I'm a good listener if you ever need an ear to bend.
I'm very excited to hear you won your disability case! I have been fighting around 2 years now and just got my letter saying my case has been worked up and is ready for hearing before the ALJ. I am ready!
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