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Cushie

Member
What is the name of your state? WA

Had to post the finale to my saga. Today I found out I am approved for SSDI. I will have my retro check in two weeks or less via direct deposit.

I am so excited and keep pinching myself. I got it on the first try, and I'm fairly young (34). Unbelievable.

Thank you all! You kept me sane by answering my inane questions.

I'm so happy that I'd dance if I had the energy!
 


paper55

Junior Member
Congratulations, Cushie! I hope to say "Approved" one day, but looks like more than a year away since have to wait for ALJ hearing. What is your med problem? How old? I'm 55 with ddd, spinal stenosis, arthritis, depression, anxiety, bulging discs, etc. God bless!
 

Flnative

Junior Member
Medicare

Will begin 2 years after your approval. Unlike your checks they dont go back from the date you applied. You should however be able to get on a state subsidized medical program.

When Medicare does start you will receive a notice in the mail telling you what day it will start on and offering you part A(HOSPITAL)or part A and B(hospital and medical). If you select part A/B you will be charged for that. The rate right now is 79.00 a month and it is deducted from your SS check. Part A is free but you are very limited with that.

If you qualify for state aided medical thru your local Family services you may also qualify in 2 years for the state to pay your 79.00 that you would normally pay for part B. this is the Medical Title 19 Program. It pays your Medicar premiums, deductible, and coinsurance payments.
 

Flnative

Junior Member
the Medicare

Part B premium amount is going up to $88.50 in 2006. This will not affect you but look for another increase in 2007 when you are eligible
 

zippysgoddess

Senior Member
They WILL start counting Medicare from when you were first disabled, my DH had to wait less than 6 months for his when he was approved for SSD.

UGH! NOT FAIR! I am 34, and just got turned down again, even tried the ALJ hearing this time. Boy, was he nasty, wouldn't believe anything, even from my docs, and the one they sent me to see. Just incredible.

Congrats on yours!
 

Cushie

Member
A few asked about my medical problems. They are:

Adrenal Insufficiency (Addison's Disease)
POTS (Postural Othorstatic Hypotension) A normal blood pressure for me is 70/50, but it goes much lower
Malabsorption
IBS
Panhypopituitarism (no growth hormone, no thyroid, no sex hormones, etc)
Low blood sugar attacks several times a day, probably insulinoma

Those are the biggies. I also have two pituitary tumors, but those don't figure into the disability.

I am so happy that I was finally approved. I will continue to cross my fingers for the rest of you waiting. This is just a hard process.
 

rmet4nzkx

Senior Member
Cushie said:
A few asked about my medical problems. They are:

Adrenal Insufficiency (Addison's Disease)
POTS (Postural Othorstatic Hypotension) A normal blood pressure for me is 70/50, but it goes much lower
Malabsorption
IBS
Panhypopituitarism (no growth hormone, no thyroid, no sex hormones, etc)
Low blood sugar attacks several times a day, probably insulinoma

Those are the biggies. I also have two pituitary tumors, but those don't figure into the disability.

I am so happy that I was finally approved. I will continue to cross my fingers for the rest of you waiting. This is just a hard process.
POTS is Dysautonomia/autonomic insufficiency. Be sure to check out the NDRF site.

Ask your doctor about secondary adrenal insufficiency slightly different than Addisons but may account for the other symptoms.

What Rx and supplements? Diet? Do you have any allergies/Rx hypersensitivities? Are you wearing compression garments? Eating salt?
 

Cushie

Member
Mine is considered pri**** AI, since I had both adrenal glands removed. I had Cushing's Disease, the pituitary surgery didn't work so we went for a bilateral adrenalectomy.

Meds are:
Dexamethasone
Thyroid (synthroid)
HRT
Florinef (lots, due to the low BP)
Growth Hormone
Salt tabs (about five a day, more if needed)
there's more, but I always forget the names

Supplements include:
Iron (deficient)
Vit E
Fish oil
Fiber
Multivitamin

I do wear compression garments, mine are hosiery. I also took Proamatine until I started having side effects. Allergic to PCN.

No special diet aside from lots of small meals. I try to avoid too much starch as it sends me into low blood sugars. After the surgery for Cushing's I lost 135 lbs so try to maintain my current weight of 105. I can't gain now (how ironic).

My life is basically a balancing act. As I'm sure is true for most others.

Now tell me how you know all this. My diseases are fairly rare. Forgot to mention that I have Nelson's Syndrome. Too much ACTH production due to the pit tumors.

Also, thanks to all for the advice on Medicare. I will be taking part B when the time comes. I'm VERY lucky that I have insurance through hubby's employer. I don't know how some people wait all that time. What a screwed up system.
 

rmet4nzkx

Senior Member
Cushie said:
Mine is considered pri**** AI, since I had both adrenal glands removed. I had Cushing's Disease, the pituitary surgery didn't work so we went for a bilateral adrenalectomy.

Meds are:
Dexamethasone
Thyroid (synthroid)
HRT
Florinef (lots, due to the low BP)
Growth Hormone
Salt tabs (about five a day, more if needed)
there's more, but I always forget the names

Supplements include:
Iron (deficient)
Vit E
Fish oil
Fiber
Multivitamin

I do wear compression garments, mine are hosiery. I also took Proamatine until I started having side effects. Allergic to PCN.

No special diet aside from lots of small meals. I try to avoid too much starch as it sends me into low blood sugars. After the surgery for Cushing's I lost 135 lbs so try to maintain my current weight of 105. I can't gain now (how ironic).

My life is basically a balancing act. As I'm sure is true for most others.

Now tell me how you know all this. My diseases are fairly rare. Forgot to mention that I have Nelson's Syndrome. Too much ACTH production due to the pit tumors.

Also, thanks to all for the advice on Medicare. I will be taking part B when the time comes. I'm VERY lucky that I have insurance through hubby's employer. I don't know how some people wait all that time. What a screwed up system.
It is true, Dysautonomia is rare, however not as rare as thought and underdiagnosed which is why getting SSDI is so difficult. You are fortunate to have insurance already. Your dysautonomia is linked to your tumors and surgery so you have not only the balancing act between cardiac and neurological systems but the endoctrine as well. Life with dysautonomia is always a balancing act and medical providers often dismiss the early symptions. Be sure to use more than stockings for compression garments.

It is no surprise you are anemic because production of blood is a function of the endocrine system in part. While Proamatine is often useful it is contraindicated when you also take thyroid hormones as it causes catacholamine cascade, I'll bet that made you miserable! Since you are allergic to PCN you may also want to avoid other sulfur based medications and high sulfur foods, so if you need more fiber you may want to avoid soybean products except for fermented, dried fruits treated with sulfur, wine/vinager, some fiber treatments. Black beans, chick peas, lima beans well washed and have the highest dietary iron and a substance in them that binds with sulfur metabolites.

Are you taking cal/mag/zinc 4 times a day? That will help with absorbtion of nutrition and binding with metabolites, it will help your medications work better. You will need a high protein/low carb diet, you are correct about carbs and low bp, if you eat carbs eat them first then the protein which keeps more even BP, so ok to eat dessert first. Ask your endocrinologist to test dhea levels and ask if you would benefit from taking dhea and chromimum picolinate together, if you have no adrenal glands B5 won't help you. If you are eating iron rich foods, combine with acid for better absorbtion and not with calcium and don't take your Synthroid and iron supplement at the same time and don't combine synthroid with food at all, better if you can take in the middle of the night if you wake up. Walnuts are a great protein snack, again don't take with or near synthroid, the best nut for Omega 3 oils and will help keep your blood sugar and bp level and up.

Timing of your medications and meals can make a big difference, have you consulted a dietician?

You might try relaxiation and meditation.

If you turn on your PM feature found on your profile you can send PMs.
 

Flgrl75

Junior Member
Congrats

I am 37 and in Florida. I have my hearing Jan 16th and have no lawyer. I have a Pit tumor, ptsd, pcos, anxiety/panic attacks, heart vtac ( my heart skips beats= hormonal), migraines, chronic pain, and memory loss. Most from having the tumor for so long. I am very nervous. So it's good to see that someone out there was approved. :)
 

TheGeekess

Keeper of the Kraken
I am 37 and in Florida. I have my hearing Jan 16th and have no lawyer. I have a Pit tumor, ptsd, pcos, anxiety/panic attacks, heart vtac ( my heart skips beats= hormonal), migraines, chronic pain, and memory loss. Most from having the tumor for so long. I am very nervous. So it's good to see that someone out there was approved. :)
The OP hasn't posted since 2005. I don't think OP is going to come back around and read your post.

Necroposting is frowned upon in this forum culture. :cool:
 

SteelCity1981

Junior Member
I am 37 and in Florida. I have my hearing Jan 16th and have no lawyer. I have a Pit tumor, ptsd, pcos, anxiety/panic attacks, heart vtac ( my heart skips beats= hormonal), migraines, chronic pain, and memory loss. Most from having the tumor for so long. I am very nervous. So it's good to see that someone out there was approved. :)
why didn't you get a lawyer? The state can give you a lawyer it says that on your disability claim sheet and if you win the lawyer takes out a portion of your winnings. If you go in without a lawyer you are battling an uphill battle from the get go. You better be able to rep yourself like a lawyer then or else you will be at greater risk of being denied disability. Those judges can be hard asses about giving people disability and they have to be to weed out the ones that really need it and the ones that don't. So best of luck on your hearing, because going in without a lawyer is going to start you out at an disadvantage.
 
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TheGeekess

Keeper of the Kraken
why didn't you get a lawyer? The state can give you a lawyer it says that on your disability claim sheet and if you win the lawyer takes out a portion of your winnings. If you go in without a lawyer you are battling an uphill battle from the get go. You better be able to rep yourself like a lawyer then or else you will be at greater risk of being denied disability. Those judges can be hard asses about giving people disability and they have to be to weed out the ones that really need it and the ones that don't. So best of luck on your hearing, because going in without a lawyer is going to start you out at an disadvantage.


Necroposting is frowned upon in this forum culture. :cool:
 

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