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Disability (Read 25617 times)
Starflower
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Re: Disability
Reply #30 - 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 Sad  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
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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Riverwn
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Re: Disability
Reply #31 - 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 Smiley
Hugs to u Heather,
Me
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Joan
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Re: Disability
Reply #32 - 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.
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Joan
 
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Lisa
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Re: Disability
Reply #33 - 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!   Smiley


Lisa
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Don´t forget, there is so much more to life than being sick!
 
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nikweth
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Re: Disability
Reply #34 - 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.
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brook2sky
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Re: Disability
Reply #35 - 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?
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Riverwn
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Re: Disability
Reply #36 - 02/27/11 at 06:53:16
 
Thats one HUGE anser Brook Smiley

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
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Riverwn
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Re: Disability
Reply #37 - 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.
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Ramona
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Joan
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Re: Disability
Reply #38 - 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.
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Riverwn
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Re: Disability
Reply #39 - 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
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missybean
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Re: Disability
Reply #40 - 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
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Joan
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Re: Disability
Reply #41 - 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.

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Joan
 
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Riverwn
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Re: Disability
Reply #42 - 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 Smiley 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 Smiley
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me
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Starflower
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Re: Disability
Reply #43 - 03/04/11 at 01:19:22
 
That's FANTASTIC Ramona!!!!!!!!!!!!!!

Grin Grin Grin Grin Grin Grin Grin Grin

Hugs Smiley

Heather
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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)
 
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Riverwn
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Re: Disability
Reply #44 - 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
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