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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Disability >> Disability http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293636269 Message started by DeborahW, Founder on 12/29/10 at 03:24:29

Title: Disability
Post by DeborahW, Founder on 12/29/10 at 03:24:29

(Archived from fduran2848 - original forum)
I know this comes up quite often and thought we may need a thread that people can refer back to.

I was looking over the online disability application.

One thing that struck me was that you will receive a check 6 MONTHS after you are deemed disabled.

So if they say you became disabled in Jan '10 you would not qualify for a check until June '10.

Has this been anyone's experience that has received disability? I, for one, can not go 6 months without any income.

Faith

06 July 2010 02:49 PM

Title: Re: Disability
Post by DeborahW, Founder on 12/29/10 at 03:29:17

(Archived from riverwn2 - original forum)
Im just starting to go through the process now--and Kate has been a godsend to me with this. Shes very experienced with the process and the paperwork, so hopefully she will jump in here to give her opinion.

I will say what she told me and it proved quite true.
The first step is to go to the SSI government website and apply to get an "earnings statement". That tells how much you would qualify for, depending on how many years you worked within the last 10 years. Check this carefully and make SURE it matches your records. The amount of money you will get depends on this and frequently what your employer reported will not match your own records. In my case I didnt think this would be a problem--boy was I wrong!! They didnt report 4 years of my earnings and it made a HUGE difference.. 10 points for Kate, she knew before I did.

OK now Im sending my own copies to SSI govt, and asking them to recalculate my earnings and qualifications. Once they do that, I will apply for SSI and SSD for the first time and wait to be denied--so I can hire an attorney.

I was concerned that I couldnt be working and apply for SSI, ...VERY untrue. As long as you can show a BIG impact on your life and earning ability, you can apply now--and you should since it will take about 2 years to get through this process.. again, my thanks to Kate, SHE knew this, I didnt and it sure eased my mind... Kate should take this thread over now.. :)

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06 July 2010 05:03 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:10:14

(Archived from jysmith - original forum)
Hi Faith,

If disability is approved, the first SSD check will include pay retroactive to the date of application. Getting from here to there can be difficult if you don't have another source of income. It's best to try to get your health issues really, really well-documented. Still, many people have to appeal. I believe the attorney's fees are still limited to a percentage of back pay, with a cap. I also think you can have an attorney help you fill out your initial forms, but you might have to pay for that upfront.

Joan

__________________
Take care, Joan

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:11:52

(Archived from fduran2848 - original forum)
Wow....sounds like I need to start putting some money back to survive on during that time.

07 July 2010 07:58 AM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:13:12

(Archived from riverwn2)
Faith, Im trying to find some kind of work to do from home, you might look into that now before you are pushed into it by circumstances later (like me). Good luck hon, I'll let you know how my search goes and we can share ideas :)
Ramona

__________________
Remember to count your blessings!
07 July 2010 10:17 AM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:14:21

(Archived from original forum)
You know what I hate? I can never qualify for disability even though I can never hold a real job. The reason is that I never had a real job before I got sick. I didn't work in high school, college, or grad school, although I did tutor kids a lot. Since I got really sick in grad school and thus didn't finish my doctorate, I never got the chance to work! I am pretty sure that you can only get disabiltu after working and them finding yourself unable to work anymore. To complicate matters even more, since I was creative and started a business, that makes it look as if I can work. This is ironic, because I can't work at my business much because it makes me feel sick. However, I must keep the business going because the money it does bring in supports my parents. Now, how is that for a dilemma? Too sick to work (or in other words not working keeps me well), but able to keep a business that I can't close down.

It does pose a big problem for people who get sick right at the age they might have started working. No disability for them because they got sick at the wrong time? Ridiculous.
__________________
Feel well!
Deborah 07 July 2010 10:30 AM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:15:16

(Archived from original forum)

I think you wouldnt qualify for SSD but you would qualify for SSI--you dont need to have worked for that. Your problem would be proving it made an impact on your income since you were smart enough to set up your business and its doing well... :( sorry hon, it IS unfair.

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07 July 2010 10:38 AM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:16:52

(Archived from fduran2848 - original forum)
I agree about the SSI.....I know of a man who did not qualify workwise for disability but does get SSI. Is it the same amount? I have no idea.

I THINK SSD is based on the amount of work credits you have and that is based on the amount you earned over a certain period of time.

07 July 2010 11:06 AM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:18:21

(Archived from riverwn2)
Faith that is exactly right, from what i read on the webpage, plus my husband has SSI but cant get SSD.

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Remember to count your blessings!
07 July 2010 01:39 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:19:26

(Archived from kateswmo - original forum)
If disability is approved, the first SSD check will include pay retroactive to the date of application.
Joan

-jysmith

Just a note to add some information... IF an individual's earnings are not sufficient enough to grant them full SSD and SSI is granted as well, the SSA will payout back pay on benefits over a 6 month period so as not to interfere with the income guidelines for SSI. Also... the retroactive will NOT always go back to the date of application. Sometimes, if the Appeal Judge finds that you became totally disabled on a date AFTER you submitted your application then your back pay will ONLY be retroactive to the "Date of Disability".
Kate

__________________
MCAD-HV / RUA / DUB / CRF-3
07 July 2010 05:27 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:21:28

(archived from kateswmo - original forum)

I was found to be completely and totally disabled and was awarded SSD benefits. However, most times, when you apply for benefits, the same application will be used as application for both SSD and SSI. SS Admin pays disability benefits under these two individual and separate programs: The difference between SSI and SSD is this...

Supplemental Security Income (SSI) is a Federal income supplement program funded by general tax revenues (not Social Security taxes): It is designed to help aged, blind, and disabled people, who have little or no income; and It provides cash to meet basic needs for food, clothing, and shelter. SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits.

The Social Security Disability insurance program pays benefits to you and certain family members if you worked long enough and paid Social Security taxes. Your adult child also may qualify for benefits on their parents' earnings record if he or she has a disability that started before age 22. For most people, the medical requirements for disability are the same under both programs and disability is determined by the same process. Whether you apply for Social Security or SSI disability, they ask you for information about your medical condition, work and education history to help them decide if you are disabled under their rules.

"Disability" under Social Security is based on your inability to work. You are considered disabled under Social Security rules if: You cannot do work that you did before; We decide that you cannot adjust to other work because of your medical condition(s); and Your disability has lasted or is expected to last for at least one year or to result in death.

One thing I would greatly suggest to any of you who are thinking of applying for benefits. Call Social Security Admin and get a copy of your earnings record. Verify that they have ALL of your earnings from EACH EMPLOYER on file and they are correct. You can verify this with copies of your W2 forms. The reason I say this is one of my former employers was somewhat less than scrupulous. He gave the employees our W2's but never turned them in to the State or the IRS or SS Administration. Which means that SSA never had record of those earnings at all and therefore could not use them to determine my total benefit. Unfortunately I filed my taxes online and failed to keep a copy of my W2's. This was for about 4 years of work so it was a pretty significant chunk of earnings that I did not get credit for on Social Security's end. If I had saved copies of my W2's and could produce them for SSA it would have made about a $300.00 a month difference in my benefit. So Please, Please check your recorded earnings with them so the same thing doesn't happen to you. Also, the SSA told me that situations like that are more common than one would think!

If anyone needs help with the application process, or other assistance, please feel free to email me.

TCGB

Kate

__________________
MCAD-HV / RUA / DUB / CRF-3
07 July 2010 05:38 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:22:28

(Archived from starflower - original forum)

Once a year (around my birthday) I get a statement from Social Security outlining my income for the last few years... the amounts have always been correct. Is this the kind of thing you're talking about? How far back do they look to calculate what your SSI/SSD benefit would be?

Thanks for sharing this information Kate! I hope I never have to use it, but better to be prepared :)

Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
07 July 2010 08:28 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:23:23

(Archived from riverwn2 - original forum)
Yes thats it Heather.. they look back the last 10 years.

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Remember to count your blessings!
07 July 2010 11:40 PM

Title: Re: Disability
Post by DeborahW, Founder on 01/01/11 at 15:25:16

(Archived from legacy - original forum)

Yes thats it Heather.. they look back the last 10 years.

__________________
Remember to count your blessings!
07 July 2010 11:40 PM

Title: Re: Disability
Post by nikweth on 01/27/11 at 00:03:22

Hello, I have a question about how to get some recovery time off work. I have been ill for 14 years now. My IA kicked in 6 weeks into my second pregnancy and I have been on the same roller coaster you all have been on ever since. I had a bone marrow test done at U of M a few years ago when Dr. Akin was still there and my test results were negative. However, I went to Mayo last week and they dx me with MCAD. Apparently, it is a subcategory of Masto. I go into "shocker" mode a few times a year but I have been ill for the past 57 days and cannot seem to recover. I moved to a new work area and am convinced this is it. I have been talking to HR about a new location. I start reacting every afternoon. I had to call 911 one afternoon and also had an IA episode as soon as a left work on another day. I worked in this same location last year for one month and ended up shocking three times during that timeframe. The first was at work (called 911), one time was after leaving work and one time was after I made it home. I am waiting for some of my scripts to come in (Gastrocom) and increased dosages of Allegra. I will begin taking these tomorrow. In the meantime, I'm calling in again today because I cannot breath well, am extremely tired and have rash/hives all over. I'm set for a IA shock and just cannot bring myself to go in today. I'm soooo tired. I feel like a need a few weeks off to get my body straightened back out but am nervous about asking my doctor however I don't think he would blink an eye at it. I also have 3 weeks of sick leave and 2 weeks of vacation leave built up and fmla paperwork. I am not usually one to take work off but I did take a week off last month due to an IA episode. I'm feeling nervous about asking and guilty about not being at work. Any suggestions how how to approach my dr with this? I'm going to try and get an appt today. Thanks all and God bless!

Title: Re: Disability
Post by Starflower on 01/27/11 at 01:06:36

Welcome to the group!

Taking some time off is an excellent idea... you already know that :)

Having you shock at work... especially if it's due to an environmental sensitivity... is a major liability for your employer. Hopefully HR will understand this and move you without a hassle. If not... you should seriously think about looking for a different job. I know this is easier said than done (especially in this economy), but isn't it better to work than go on disability? Going through severe anaphylaxis three times in one month is very hard on your body.

And definitely... do increase your medications! We're lucky that our basic treatments are so safe. Antihistamines are not addictive and rarely cause dangerous side effects. Ditto for Gastrocrom.

Heather

Title: Re: Disability
Post by nikweth on 01/28/11 at 02:13:35

Thanks for the feedback. I'm going to the dr today and I think I will ask for a few weeks off however I'm not sure how to go about asking. I've never done that and feel very insecure about doing so. Also, I am looking for a different job. I work for the gov't so I've got it pretty good. Pay is good and benefits rock and being a single parent in a tough economy I'm having a hard time finding something comparable. I would love to work at home but my ed/experience is HR and most organizations want their people in the office. I started taking Singulair this past week and believe I'm allergic to it. I have had hives all week and difficulty breathing. I noticed it is kicking in in the afternoon and I take the Singulair about 2:00. Also, I never get hives unless it is a med allergy. I'm hoping there is another leukotrine (spelling incorrect) blocker that works like singulair.

Title: Re: Disability
Post by Riverwn on 01/28/11 at 06:40:15

Oh Hon, Im so glad youre here!! You found the right place. Asking for time off work doesnt come under the heading of SSD or SSI but it sounds like you already have that covered with your work insurance and plan.. You DO need some time off for your body to reset and relax again--ask for it.

The next think is this, I dont know all meds yyou are on but.. it isnt enough.. or you wouldnt be trying to shock like you are continually. Im a shocker and a leaker too.. been there done that LOL...

You need both H1 and H2 antihistamines twice a day. You need mast cell stabilizers like Ketotifen and Gastrocrom too. You need a "rescue" drug(s) for when you start to go into shock, like Benadryl or Vistaril. (besides your epi pen). I know you are afraid to take too many meds but remember this--our bodies NEED wayyyy higher levels than most people do--and what is more dangerous to you? Going into shock OR being a bit sleepy?

We're here to help you wade through all this. No.. go read the list of foods high in histamines--and for now, keep to it like a bible.. you can test foods later when you are more stable.

Start a diary--Food/activity/how you feel, to start figuring out all your triggers--that is a longggg process and this is very important to do.

Also I ant you to start a "work" diary all about how this disorder affects your life on a day to day basis--no matter how small the symptom. It will help you TREMENDOUSLY when you finally file for Disability.

OK enough for one day LOL Ask anything, we here to help!!
Hugs,
Ramona

Title: Re: Disability
Post by nikweth on 01/28/11 at 11:35:05

Thanks for the feedback. I was just prescribed 180 of Allegra instead of the 60 I was taking, Randitine stayed the same, I'm already on Ketoifen and Nexium. I was prescribed Singular but it looks like I'm reacting to that with an all over body rash. I was also prescribed Gastrocrom that I will start Monday. I have a UTI so have to start Cipro and I'm wondering if that is part of my problem with symptmos right now. I did get all of next week off work but my boss was clearly irriated but right now I just don't care as I feel awful. I have keep a very clear line of communication open with HR so I hope this doesn't come back to bite me. I am working with a doc at Mayo so that's helping me feel like I may be on a good path.

Title: Re: Disability
Post by Riverwn on 01/29/11 at 03:43:40

Good girl!! and YES, UTIs are often a reason I trigger!! Keep track of those religiously--I hate to say it but the are often caused by mast cells not an infection.. what were the results of the urine test?? if it came back with leukocytes, no or few bacteria then youre heading toards IC (Intersticial Cystitis). That diagnosis alone is reason to get Disability.. ok now I want you to keep another diary--one for UTIs or symptoms of them.. that helped me get disability. I'll give you an example of what I did soon.

Be careful with the Cipro.. I react to it--most masto people need 3rd generation antibiotics, remember to tell your doctor that. I can take Cipro BUT.. I take a smaller dose and add an extra antihistamine when I take it... You cant ignore the UTI but you dont want to react either--I know how it is!

Hope you feel better soon :)
Hugs,
Ramona

Title: Re: Disability
Post by nikweth on 01/29/11 at 05:26:14

Geez, always something new to look for. I did not get the results of my uti but I'll ask for them. I'm not sure what (Intersticial Cystitis) so I'm going to look it up. I had a profile run a few years ago of antibiotics both pharma and natural that I can take and most of them I'm resistent to. The others I'm allergic to. Cipro was one that I think is okay for me but I'll up the antihistimine.

Title: Re: Disability
Post by nikweth on 02/05/11 at 06:08:15

Okay so I started Cipro on Wed and reacted on Fri morning. Now it's another big dose of steriods for a week and added Bendryl. I only took the Cipro for two days so I know the uti is still there. Plus, I am still uti symptomatic. Now I don't know what to do. What are 3rd generation antibiotics? If masto is often a cause for uti's, is there some precautionary steps to ensure these do not happen. As I understand, cranberry juice is out.

Title: Re: Disability
Post by Starflower on 02/05/11 at 06:43:06

Why would cranberry juice be out? Does it affect you personally? And... are you sure it's really a UTI?

Heather

Title: Re: Disability
Post by nikweth on 02/06/11 at 05:58:55

Well my dr. said it was a UTI and I thought cranberry juice was high in histimine. Maybe I misread the histimine food list. I'll recheck. I am worried about it being more than a uti such as IC.

Title: Re: Disability
Post by Starflower on 02/06/11 at 06:34:08

A lot of doctors will just see blood cells in your urine and order a Rx for antibiotics... when the culture comes back negative for bacteria (which means it's not a UTI) they don't bother to inform you! I've had that happen (of course, I didn't know it until a few years later)... it seems to be a fairly common experience among women with mast cell disorders. Here's a link to a list of causes for "hematuria" from the Mayo Clinic website:

http://www.mayoclinic.com/health/blood-in-urine/DS01013/DSECTION=causes

In my case, I think the hematuria is a sign of mild kidney damage... I've had traces of blood in my urine for several years. (Mild kidney damage is just something to watch, not something to panic about.)

Heather

BTW... personally, I don't have a problem with cranberries. It's not like drinking alcohol or eating leftover seafood (ouch).

Title: Re: Disability
Post by Riverwn on 02/06/11 at 07:38:53

We are all so different--as we are the same on many things too.. I went into shock after drinking craberry juice last year--it as the final straw in "filling my barrel to overflowing" and I crashed.. maybe it has to do with the brand I was drinking Ocean Spray cranberry Blueberry--it looked soo good on the commercials LOL.. so I cant drink it either. I drink water, over crushed ice ith a small slice of lemon when I have a UTI.. I dont get them that often now--I recognize them as IC... (few or no bacteria on the lab result)...

IC is after youve been through bouts of diarrhea (which makes mast cells buzz around and migrate to the bladder--it only takes 3 days for that to happen). IC feels like the commercials you see about over active bladders... except ours is caused by mast cells in the bladder. You have urgency, frequency, pain in the bladder, bloating and spasms. I take Vistaril and Ditropan for it and it has helped me soooo miuch! The Vistaril is the best for it--I like to troll NIH website and read their research and found it on their site, what they were using for it. It just about changed me from LIVING next to the bathroom to being much more normal life style again... from 20 to 30 bladder spasms a day down to 1 or 2 and some days ZERO!

Hope this helps
Ramona

Title: Re: Disability
Post by Riverwn on 02/06/11 at 07:40:22

Correction to the above statement.. it takes 4 days not 3.

Title: Re: Disability
Post by nikweth on 02/20/11 at 13:09:37

Is there any stats on how many masto patients go on disability? And, once on disability, do masto patients find that they can get on a good healing path so they eventually get off disability. I'm a shocker and have been off work for the past two months on and off. I'm not sure where this flare is taking me as I cannot seem to shake it but I love working. Right now I cannot work but I don't see this (hopefully) being a forever thing. I'm also not sure how to navigate the work thing. They think your nuts when you tell them your having anaphylactic reactions but you don't know what to. I'm know they think I'm lying. I'm so grateful to have a dx from Mayo so at least they know I have been to one of the most respectable hospitals in the U.S.

Title: Re: Disability
Post by Riverwn on 02/21/11 at 08:00:38

I dont know how many go on SSI and how many ever get off.. that would depend on what category of MCAD you fall into... Ive never heard of anyone coming off it.. we have to concentrate on taking care of our health as priority. I know how you feel..

34 years of being a nurse--I was used to being the caregiver, not needing one. I grieved for months over being forced into retirement at an early age... Then I put my big girl panties on LOL.. and decided I still had alot of life left in me and found something positive to accomplish with my life...You take care of you and lets just see where it goes ok??
Thinking of you,
Ramona

Title: Re: Disability
Post by nikweth on 02/22/11 at 02:33:33

Thanks for the feedback. I know it's one day at a time which is hard for the planner/organizer in me. I tend to think 6-12 months out. For example, I have another site open right now where I'm planning my July/Aug camping trips because "of course my mcad is going to be completely under control" lol.

Title: Re: Disability
Post by Starflower on 02/22/11 at 04:42:50

I don't remember what kinds of reactions you're having... but I would think twice about camping... unless it's in your backyard or close to a hospital! What if you were stung by a bee or scorpion or bitten by a snake? What if you went into anaphylaxis? What if you got really cold and miserable (or really hot and miserable) and it put you into a flare for several months?

There are just so many down sides to camping :( Managing a mast cell disorder is not just about finding the right medications... it's also about keeping yourself out of dangerous situations and preventing symptoms before they have a chance to get out of control.

Heather

Title: Re: Disability
Post by Riverwn on 02/22/11 at 09:20:50

Thats funny you said that Heather.. cause I was just talking to my Mom about it, the same thing.. Im sooo glad I went camping VERY frequently, when I was younger and not ill.. I wouldnt chance it with a ten foot pole now LOL.. a day trip close to a hospital?? Maybe.. I sure love the memories we created though :)
Hugs to u Heather,
Me

Title: Re: Disability
Post by Joan on 02/22/11 at 14:08:56

Back to something Nik asked, there were other leukotriene inhibitors back in 1997, but I don't know if they're still available. One was Zyflo and the other was Accolate.

Title: Re: Disability
Post by Lisa on 02/22/11 at 14:19:23

Starflower wrote on 02/22/11 at 04:42:50:

Managing a mast cell disorder is not just about finding the right medications... it's also about keeping yourself out of dangerous situations and preventing symptoms before they have a chance to get out of control.

Heather

Gee, Heather, you summed it up right there as to what living with mastocytosis is ALL ABOUT!! Excellent advice girl! :)

Lisa

Title: Re: Disability
Post by nikweth on 02/22/11 at 23:51:08

Camping is actually one of those things that I haven't had to give up yet (whew) and, that's because I pick state parks that are close to hospitals. As with many of you here, everything I do is strategically planned around emergency care. I try not to worry to much about bug bites although I'm careful and cautious around insects. I live in the country on the river so my normal life exists outside. I love the summer outdoors and am hoping not to have to give that up since my winter life has been greatly compromised living here in Michigan.

Title: Re: Disability
Post by brook2sky on 02/27/11 at 01:59:46

I begin my family medical leave this week and am applying for long-term disability through my employer. However, I don't think that includes insurance, so I'm going to need to get on social security disability in order to get medicare.

The question is, since it takes a long time to get approved to social security disability, what should I do about insurance between the time my employment ends and medicare kicks in?

Title: Re: Disability
Post by Riverwn on 02/27/11 at 06:53:16

Thats one HUGE anser Brook :)

OK first thing you do is, start documenting EVERYTHING, You need a pain dairy... another diary for how this affects your ability to work..another for various symptoms to keep track of.. Documenting is how the govt rates everything, the more paper trail, the better..

Keep copies of all tests youve had done, Make a list of dates of treatment, doctors who treated you and why. Make a list of meds, what you take them for and who Rxed them to you and when.

The good thing (?) about masto is, it is on a "blue list" for SSI and SSD. That means you probably dont need a lawyer (dont sign anything for right now).. and you will most probably be approved the first time.. It took me only 4 months! I had a horrendous list of diagnoses and I deluged them with paperwork..

Once approved, you will get Medicaid that will pay for most meds 100%.. Until then.. thats the hard part...

There are a few areas to look into it.. First check with your county and see if the local hospital has a charity care program. I know it hurts the ego, just bite the bullet and do it..

Next see if any other hospitals near you have a program for low income people. Now look online at LilyCares.. they will supply alot of meds for low cost or even free and they work with many other companies to do it. The good thing is most masto meds are OTC and the ones that are not OTC, you can buy in other forms that are OTC.. you might not have the same percentage of the med in the OTC but its much better than not having it at all.

Any other questions, just ask away!!
Hugs,
Ramona

Title: Re: Disability
Post by Riverwn on 02/27/11 at 06:59:26

PS most counties have their own version of temporary Medicaid... Call your local office that handles food stamps and other govt services, they usually all are the same people who handle this. I had "temporary" Medicaid... "for medically needy" from my county until the state office approved my SSI and I got regular Medicaid then.
Hugs
Ramona

Title: Re: Disability
Post by Joan on 02/27/11 at 17:40:16

Correct me if I'm wrong, but if you get SSD, you will eventually be on Medicare. I was told it would be after 2 years of disability, but it took me 2 years to get SSD to begin with, because I was undiagnosed, so I got medicare when I was approved.

I believe you qualify for Cobra through your employer's insurance. That lasts 18 months, although you have to pay for it.

I believe whether you get SSD or SSI depends on how many "work credits" you have.

Title: Re: Disability
Post by Riverwn on 03/01/11 at 20:19:34

Youre right Joan..because the last 3 years I worked, I was so sick, I kept paring down my shifts until I was only working 3 a month... then they let me go.. because of the fewer work credit those 3 years, I was approved for SSI and Medicaid, not SSD.
hugs,
me

Title: Re: Disability
Post by missybean on 03/03/11 at 05:14:47

I heard someone mention something about using disablity through their work. A friend of mine bought disablity through her work when she started the job and about 6 years later she had to use it, so she got cobra and because she was on this disabilty her cobra was reduded greatly. I think origanilly it was going to cost 450 for the cobra but her reduced rate was between 50 to 100 if memory serves me correct....I wanna say 56 dollars. Maybe you can get reduced cobra too.
Melissa

Title: Re: Disability
Post by Joan on 03/03/11 at 06:09:18

Doctors have no idea how serious the repercussions are when they make snap judgments that keep us from getting a diagnosis. So sad.

Title: Re: Disability
Post by Riverwn on 03/03/11 at 16:26:31

WOOHOO Big change for me today!! I got a surprise letter from Social Security... I had NO idea they were still considering me for SSD--and I got it!! Im so thrilled :) It almost doubles the income per month! I feel extremely lucky! Just wanted all of you to know my good news.. That and 3 good days in a row.. I feel wonderful :)
Hugs
me

Title: Re: Disability
Post by Starflower on 03/04/11 at 01:19:22

That's FANTASTIC Ramona!!!!!!!!!!!!!!

;D ;D ;D ;D ;D ;D ;D ;D

Hugs :)

Heather

Title: Re: Disability
Post by Riverwn on 03/04/11 at 02:37:12

I feel emotional (in a great way) today.. and just want to tell all of you how much I appreciate you. I wouldnt have made it this last year without you, a few of you who lovingly let me borrow your brain endlessly and email you beyond exhaustion LOL.. Im feeling like a lucky lucky girl today!
Love you all'
me

Title: Re: Disability
Post by In2butterflyz on 03/04/11 at 07:05:42

[smiley=2vrolijk_08.gif] CONGRADULATIONS Ramona!!!!!! [smiley=2vrolijk_08.gif]

I am so happy that everything worked out so great for you! ;)

Take Care,
Tracey

Title: Re: Disability
Post by Riverwn on 03/05/11 at 05:47:07

Thanks Tracey!!
Many Hugs!!
me

Title: Re: Disability
Post by foxsh on 04/25/11 at 06:22:51

I was looking at some of the posts about social security disability. Someone mentioned that masto is on a "blue list". I have been turned down for disability and working on the appeal. What is it listed as on the blue list? What category is it under?

Title: Re: Disability
Post by Riverwn on 05/02/11 at 09:17:37

Ive never seen the "bluebook list" Ive only heard of it. I do know however that Social Security does take Mastocytosis seriously, I got my SSI in 4 months , no lawyer and then got SSD in the 5th month and Medicaid.

OK if youve already been turned down. you might need a lawyer Hon and I have one for you that specializes in Masto cases, never lost one. He will come to where you are, you dont have to travel to him. His name is;

Berry & Associates
2751 Buford Highway NE, Suite 400
Atlanta, Georgia 30324 (DeKalb Fulton Cos.)
Phone
(866) 986-9015

Whichever way you choose to go, good luck and let me know if I can help!
Hugs
Ramona

Title: Re: Disability
Post by nikweth on 06/20/15 at 08:08:41

So I started with another flare in March after an ear infection and it is still hanging with me. The older I get, the longer the recovery period. I've Ben off work for a solid month with a few more days off here and their. I'm about 60% better but as soon as I get wore out which is daily, symptoms flare. They are mostly active in the afternoon. I have an awesome allergist that I really appreciate. She speaks with dr. Aiken when she is stumped. I'm not improving like a normally do and some days find it a struggle just to get through. I will be going back to work Monday because my allergist stated that since I'm not getting worse right now, she cannot continue to keep me off. It doesn't look like she is doing her job helping me progress. People seriously don't get this crap. How can one get disability if the doc primarily caring for them doesn't want to look bad. She said if I need more time off, I would have to for thru my primary physician. Except I never see my primary. lost!!!

Title: Re: Disability
Post by DeborahW, Founder on 06/22/15 at 09:23:20

Unfortunately, it looks as if you have no choice but to start seeing your primary doctor. If you don't care for that one, perhaps look for an internal medicine doctor as opposed to a general practitioner and just find that personality person who seems to care enough to actually listen to you. So often it seems harder and harder to find just that type of doc!

I definitely feel for you!