Friday, May 31, 2013

Applying for Disability with Multiple Myeloma

Regular readers will know that this blog is really a diary to help share what it's like contending with this disease, and that's the way that I'm most comfortable helping.  I don't really do public service announcements.

However, I was recently contacted by Ram Meyyappan from an organization called Social Security Disability Help.  He asked if I would post an article about how to apply for disability with our condition.  Since I thought this information might be of benefit to some of my readership, I agreed to post it -- I hope it can be helpful.

Thanks to Ram for contacting me and putting this information together.

Applying for Disability with Multiple Myeloma
If you suffer from Multiple Myeloma, then you may qualify for Social Security Disability (SSD) benefits under one, or both, of the Social Security Administration’s (SSA’s) disability programs. The severity of your disease as well as the treatments required for addressing your condition, both affect whether or not you can be found medically eligible for SSD benefits. However, there are additionally technical requirements for eligibility under both programs that must also be satisfied.
The SSA’s Disability ProgramsFor either SSD program, you must meet the basic eligibility requirements before the SSA will proceed in reviewing your medical condition in more thorough detail. Basic, or technical, eligibility under each program differs.
  • For Social Security Disability Insurance (SSDI), you must meet the work credit requirements and limitations on earned income.
  • For Supplemental Security Income (SSI), you must have very limited income and other financial resources at your disposal.
Once the SSA has determined you meet the technical criteria to receive benefits through either, or both, of these programs, then your application and your medical records will be reviewed to determine if you meet the medical requirements for eligibility.
For more information on SSDI and SSI, please visit:
Medical Eligibility BasicsTo be considered disabled by the SSA, you must have a medical condition that (1) prevents you from maintaining gainful employment AND (2) is expected to last, or has lasted a year, or which is terminal.
Specific Medical Evidence for SSD with Multiple MyelomaThe SSA maintains a manual known as the Blue Book, which contains the medical evidence requirements for supporting a disability claim for many different potentially disabling conditions. The listing for Multiple Myeloma appears in Section 13.07 of the Blue Book and requires your condition was diagnosed by the following tests:
  • Urine protein electrophoresis
  • Serum blood protein electrophoresis
  • Bone marrow aspiration or biopsy
Additionally, in order to qualify for SSD benefits under this listing, your Multiple Myeloma must also:
  • Be progressive, even after receiving anti-cancer therapies
  • Fail to respond to the available anti-cancer treatments
If you have received a stem cell or bone marrow transplant to treat your Multiple Myeloma, you are automatically eligible to receive disability benefits under SSDI and/or SSI, provided you meet the technical eligibility criteria for either, or both, programs.
Transplant patients are medically eligible for benefits for 12 months following their transplant surgery, regardless of their medical condition otherwise during that timeframe. After the expiration of the automatic eligibility period, their condition is evaluated by the SSA to determine if they are still disabled and therefore eligible for the continuation of SSDI and/or SSI benefits.
Submitting your Disability Application
There are several ways in which to submit an application for disability benefits: 
  • In person, at your local SSA office
  • Under some circumstances, via phone, with an SSA representative
You can contact the SSA’s main help line at 1-800-772-1213, if you need to inquire about scheduling a phone interview to complete your application, or contact your local SSA office to schedule an appointment to complete your application in person.
You should also strongly consider hiring a disability attorney or advocate to help you with your claim. Not only will your attorney help you fill out the necessary paperwork, but he or she will also help you with the appeals process if your claim is denied.
Article by Ram Meyyappan
Social Security Disability Help
For more information on Multiple Myeloma and SSD, please visit:

Wednesday, May 29, 2013

A contrarian opinion on nutrition and Myeloma

Hello folks.   Have been waiting for something noteworthy to post...there are a few things that are percolating but nothing has really broken through just yet, although hopefully in the next several days there will be a couple of things of (minor) interest.  Quite minor, as in don't expect much.  :)

One recent text I got from a friend a fellow traveler did tickle my funny bone, however, and I thought I would pass it along.

Among the many things we MM patients consider is the impact of diet on our condition.  Is there anything we've eaten that could have made this worse?   Diet soda has had a number of detractors lately, although it's a little murky considering some of the damning research was subsequently retracted.  However, Dr. BD (a leader in the field and one of my early consults) is big-time against consuming any diet soda and considering I was drinking 10 a day (not an exaggeration) before diagnosis this probably played a part in my disease.

Then there's Asparagus.   What to make of it?  Death-dealing carcinogen to be avoided by Myelomics?   A powerful cancer-fighter?  Or somewhere in between?   My money is on the latter, although based on the evidence it's probably not a good idea to pound this stuff if you have blood cancer, MM included.  But a few stalks one or two times a month?   Pfft.

Then there's curcumin.  Preventative care for MGUS, if not MM?     Or...maybe something else?

My point isn't to poop on the holistic medicine parade here, but I did want to convey a quick message that maybe...JUST MAYBE...we should relax, eat sensibly, and not sweat the details too much.

My friend BB, not to be confused with my Dr. BB, is experiencing a rare (for UAMS) and unfortunate (for anybody) recurrence of MM after initially responding favorably to treatment.  Per the aggressive UAMS approach, the response to this is...continued aggressive treatment.  BB (the friend, again not the doctor) has undergone the newest drugs (Kyprolis and Pomalidomide) with mixed effects, additional VDT-PACE (nasty chemo), and several other combos, and has found some stability with low-doses of chemo administered continuously over 28-day cycles.   He's understandably tired.

He wrote:
"I've always led a healthy lifestyle, diet, exercise, etc. but considering everything I'm going through I need to step it up...So here's what I've started and am developing along the way as I do more research:
Reduction of fat in diet.  Curcumin.  Barley.  Probiotics.  Beta Glucan.  Lots of Omega 3s. Daily detox juice of kale, cucumber, apples, ginger, lemon juice, olive oil.  Breakfast of organic Greek yogust (not the pretend stuff) with flaxseed oil."
Then the payoff:
"Of course BB says it's all a bunch of crap."
Haha!   I do love my doctor.

I think the point is not that BB advocates an intentionally unhealthy lifestyle (like me drinking 10 cans of diet soda a day for ten years) but that a sensible diet in moderation is likely to have just the same impact on Myeloma as spending two hours a day assembling a precise cocktail of stuff that deprives you of the joy of just eating what you want (again, in moderation).  Should you eat short ribs and ribeye steaks every day?  No.  But should you sweat a cut of lean beef every 10 days?  No.  Should you eat a pile of bacon or steak and eggs for breakfast every morning?  No.   But confining breakfast to yogurt made from goats grazing in a "blue zone" on a particular Greek island probably isn't worth the stress.

I hope that my friend BB gets better quickly -- from any combination of overzealous dietary focus to good ol' fashioned poison.  But don't forget to stop and smell the roses...without stressing too much about whether or not they've been sprayed recently for pesticide.  :)

Thursday, May 2, 2013

Hmmmm...a hiatal hernia

So hot of the presses, I called Dr. LJ's office to find the results of the double endoscopy.  I'll evidently be getting a letter detailing everything.

The good news is that my colonoscopy is completely normal and negative for everything.  I guess I'll just rely on Immodium to stabilize things once I am off meds and take it from there.

The bad news is that I have a hiatal hernia, which is when the top of the stomach intrudes where the esophagus is supposed to be.  It's nothing to be concerned about but it can cause acid reflux, which I have experienced from time to time (including, ironically, last night).

It can be corrected surgically but this is considered an extreme step.  Instead, they recommend some simple dietary changes.

I just looked this up, and they sucked.  It might as well be a list of food I enjoy.

To avoid:

* Citrus foods, such as oranges, grapefruits, lemons, orange juice, grapefruit juice, cranberry juice and lemonade.  Not the end of the world but I do have this stuff 2-3X a month.

* Chocolate.  I am good at curbing my sweet tooth most times by I do have this 2-3X a month as well.

* Fatty and fried foods.  Easiest thing for me to eliminate -- I effectively have already done so.

* Garlic and onions.  Love them both.  Essential in some cooking.  No way.

* Spicy food.   Love it.  No way.

* Peppermint and spearmint.  My precious altoids!  Not a big deal.

* Tomato-based foods such as spaghetti sauce, pizza, chili, salsa and tomato juice.  No way.  I loves me some tomatoes.

* Coffee, tea (including decaffeinated versions) and alcohol.  Good luck there.  No way.

* Carbonated beverages.  Again, no way.  So far, I can drink tap water and eat steamed broccoli so long as it doesn't have a hint of spice or onions or garlic.  I think I'll deal with the acid reflux.

* Dairy products.  I don't use a lot, but once in a while they're necessary.

* Oil and butter.  Oh c'mon.  Be realistic!

So...yeah.  I'll just take my pantoprazole once in a while and enjoy my life!