Feb 22, 2011

Managing Your Finances When You Have POTS

Almost anyone who has a prolonged serious illness will eventually find themselves facing financial difficulties.  If you can't work and you have huge medical expenses, it's not surprising.  One in three Americans living with disabilities lives below or at the poverty level - so this doesn't just apply to POTS.

Here are some things that may help you adjust your finances and make ends meet.  These suggestions probably impact adult POTS patients more than teenagers, but even teens should mention these things to their parents see if there is any financial help available to the family to help deal with medical expenses.

How To Save On Medical Expenses
If you have a doctor you've been seeing all the time, ask them if they will be willing to accept just what your insurance company pays them, and forego your co-pay or take just 1/2 your normal co-pay.  They are not supposed to do this, but I know of several doctors who do it with patients when they are in a financial squeeze.

If you end up with a pile of medical bills you can't afford to pay all at once, call the doctors, let them know you have a huge pile of bills you can't pay all at once and ask if you can make payments over time until the amount is paid in full.

Similarly, most hospitals have financial assistance programs you can apply for.  If you meet the financial need requirements set by the hospital they may discount or entirely eliminate your bill.  Even if you don't meet the financial requirements, they may be willing to let you pay a set amount of your bill over time.  Just be sure they won't report you as a late payer to a credit or collection agency, because you don't want to mess up your credit score over this.  Make sure your get the name, title and phone number of the person at the hospital who agrees to the payment plan, just in case you start getting calls from another department at the hospital or a collection agency saying you owe the full amount.

When your doctor is giving you a prescription, ask if there is a cheaper version of it available, like a generic or a different dosage that your insurance company may charge less for.  If you don't have a set co-pay amount, compare prices between a few different local pharmacies.   Be extra careful about buying each of your drugs from different pharmacies, because it will not be as easy for your pharmacist to notice possible adverse drug interactions.  Whenever you buy a prescription, ask the pharmacist to check to make sure the drug you are paying for doesn't have a bad reaction with the other drugs you are currently taking.  You can also search the internet and your doctors waiting room for coupons or free samples of the drugs you are taking.

Make sure all of your procedures/lab tests will be covered by your insurance company BEFORE you have the test.  I cannot tell you how many times I thought something was covered, only to find out that the doctor's office failed to get pre-approval.  Then I got stuck with a bill and had to argue with the doctor and the insurance company in order to get it resolved.  This is stress you don't need, so always make sure it's covered BEFORE the test.

Be Thrifty and Reduce Your Household Bills
Do you really need that 2000 minutes per month cell phone plan with unlimited texting and internet?  Probably not - so call your cell phone company, tell them you are sick and out of work and ask to switch to a lower plan, or cancel that cell phone altogether since you are probably home near a regular phone most of the time anyway.

Do you need 1000 TV channels?  I didn't think so.  Call the cable company and tell them the same thing you told the cell phone company.  My mom called our cable company and threatened to switch to Verizon Fios unless they cut her bill in half, and amazingly they agreed to do that.  That saved mom over $70 a month and we still get 1000 channels (and there is still nothing good to watch!).

Don't pay for movie rentals at Blockbuster or through Netflix - your local library probably has tons of free DVDs and videos for free, and if there is something you want to see and they don't have it in stock, they can often borrow it from another local library, or may even be willing to order it for you next time they are ordering new materials.

If you spouse/kids are buying lunch at work or school everyday, encourage them to take yummy dinner leftovers or a brown bag lunch more often to save money.  My husband was spending about $80 per week on lunch, and now he only goes out for lunch one day a week, and he only goes out for pizza, saving us about $75/week.

Sit down with your family and think of other ways to trim the fat off your monthly budget.  Cut coupons, wait till pantry items like paper towels or pasta go on sale before buying them, and turn off the lights when you aren't using them.  There's always a way to find a few more pennies to get by.

My husband carpools to work about once a week with another guy from his office.  This saves us some a few bucks each time he does it and limits wear tear on the car.  Plus it's good for the environment and they can go in the HOV lane, which gets them to work faster.

Sell Your Old Junk 
If you are home all day anyway, why not take some pictures of your junk and post it on Craig's List?  I sold extra dried lavender and seedlings from my garden, old tires, furniture that's been in the attic for 10 years and one of my antique surfboards (I got a little misty eyed when I sold it, but I can always buy a new one when I'm healthy enough to go surfing again).  This is a good way to clean out your storage and make a few bucks on the side.  Next item for sale will be my Jeep Wrangler, since I haven't been able to drive for about a year.  When I am up for driving again, I can always get another car - but there is no point in letting it rust away in the driveway and paying for insurance on it while I'm not using it.

Rent a Room In Your House
This may be illegal or require special permits depending on where you live, but you can earn a few hundred bucks a month if you are willing to rent out a spare bedroom in your house/apartment or have a roommate.  You may also need landlord approval if you rent or live in a co-op.  This is especially easy if you live near a college and you just want someone temporary - one semester or one school year.  That way your not stuck with some person you don't like in your house.

Apply for Worker's Comp/Disability
Each State is different, but here in NY, employers are required to provide a minimum level of disability insurance to their employees - which you probably pay a small fee for from each of your paychecks.  In NY, the minimum benefit period your employer's must provide is 6 months, although some companies offer longer benefit periods.  Talk to your Human Resources, Office Manager or Union Representative to see what is available.  This is usually meant for the first six months or so that you are unable to work.  The statutory minimum payments aren't much.  I got about $170 a week for six months, but every little bit helps.

Apply for Social Security Disability
If you are unable to work because of your POTS symptoms, you should seriously consider applying for Social Security disability benefits.  Social Security disability is meant for people who have a disability that prevents them from earning at minimum amount of money each month, and they are not improved or expected to improve within one year from the start of the disability. You do not have to wait for the one year to pass in order to apply. You should apply as soon as you have a POTS diagnosis if you can't work, since POTS is not a disease expected to resolve itself within one year.  I applied and I received it without even having an in person interview at my local Social Security office.

Some people with POTS who applied for Social Security disability have been turned down, and each case is different, but it may be worth it for you to talk to an attorney who specializes in social security applications.  Try to find a lawyer who does not charge a fee unless you actually receive payments from Social Security.  Once you receive Social Security disability benefits for two years, you will automatically get Medicare benefits, which can help cover hospital fees and and some other medical expenses.  This is particularly helpful if you don't have your own insurance.

It is important for you to discuss this with your doctor before you apply, because your chance of being approved is greatly increased if your doctor has carefully and accurately documented your symptoms and your physical limitations.  You can collect the most relevant medical documentation to send to social security, but if you don't they will contact your doctors and you will not know what the doctor's office sends, so you won't be sure that social security has all the relevant info needed to make a decision in your favor.  As an attorney, I do subscribe to the old saying "[h]e who has the most paperwork wins," especially when you are dealing with a massive federal bureaucracy like the Social Security Administration.  If your doctor won't help you, find another doctor.  You can also send a letter with your application documenting all of your symptoms yourself.  The more detail, the better.  You really have to demonstrate truthfully how your POTS limits your activities and your ability to earn a living.

I was reluctant to apply for Social Security disability at first, because I didn't want a hand out from the government.  One of my wise older relatives reminded me that I have been paying taxes into Social Security's coffers since I started working at age 14, so I shouldn't feel bad about it.  Also, if you have to choose between your pride and keeping a roof over your head, swallow your pride and take the disability check so you can pay the mortgage and afford your medications!

Apply for "Welfare"
If you have little to no income, even if you don't qualify for Social Security disability benefits, you may qualify for Social Security's "Supplemental Security Income" - also known as welfare or SSI.  I don't know much about this, but you can read about it online.  There are government agencies and community service organizations who can help you apply, since it can be a bit confusing.

In addition to SSI, which is run by the federal government, you may also qualify for assistance from local or State agencies or non-profits, like food stamps, housing assistance or discounted health insurance.

If you live alone and can't cook for yourself because of your POTS symptoms, you may be able to get Meals on Wheels or a local community group that can bring you food once in awhile.  Don't be ashamed to ask for help.  When you are healthy again, you can promise yourself that you will volunteer for a group that helps other sick people to "pay it forward."

If you are under 18 and have POTS, your parents should look into various programs that may help you.

Check Out Local Disability Services
Most local governments have a Division of Health & Human Services or a Division of Disability Services, although the name of the agency may differ depending on where you live.  This is just a good place to start.  Tell them about your disability and what your needs are and they may be able to suggest some resources for you - financial, medical, social/activity resources, etc.

Work From Home
If you have POTS and you still have enough energy to work, but just not in the same way you did before you were sick, ask your employer if there is a way change your schedule to have fewer hours, or work from home, or do a different type of work, so you can still make a positive contribution to your employer.  Federal and State law provides certain protections for disabled workers, and most types of employers are required to provide a "reasonable accommodation" to allow disabled workers to be able to work.  This does not mean that your employer has to agree to every accommodation request you ask for... there are limitations on what is a "reasonable" accommodation and what is unreasonable.  If you need advice on this, you can research "reasonable accommodation" and "American's With Disabilities Act" online, or you can contact your local EEOC (Equal Employment Opportunity Commission) office.  These laws also apply to disabled students in schools, and disabled individuals interviewing with new potential employers.  If you think you have been discriminated against because of your disability, you may contact the local EEOC office and file a complaint or talk to a private attorney with experience in employment/disability law.

Start a Home Business
I haven't done this because it requires a great deal of effort and I'm putting all of my effort and energy into trying to get better so I can go back to my normal job as an attorney.  But, if you've got enough spare energy and time to make the effort, there's always something productive you can do from home to make a few extra bucks.

For example, a disabled friend of mine folds and packages socks for a guy who sells them at flea markets.  Not exactly a dream job, but it's physically easy for her to do and he pays my friend about $40 for each box she folds and packages.

Another example is making something at home you can sell, like wool scarves, jewelry, or artwork.  Plenty of disabled people have taken to the Internet to sell craft items in recent years, and some of them have made a decent living doing it.  Even before I came down with POTS, I sold some photos I had posted on art.com. I got a royalty check in the mail and I wasn't even trying to make any money!  A friend of mine recently started an online gluten free baking company and she's doing well.

Come to think of it, maybe this blog is my big fortune waiting to happen.  OK, probably not, but I do get a few pennies every time someone clicks on one of the Google Ads on the right side of the page... so feel free to click away.  In two months I had 507 page viewers and I made $3.02.  So watch out Facebook, I'm catching up to you fast!


  1. Hi there, it's Renee...I enjoyed meeting you today. You have some really great information on your blog for people who are suffering with chronic conditions. The only suggestion I would have is that while patients may want to shop around at several pharmacies to find the least expensive prescriptions, it's a good idea to use one pharmacy for the purpose of being able to identify contraindicated medications. A patient may have two physicians writing prescriptions for medications that should not be taken together. If the patient uses the same pharmacy, chances are the pharmacy's computer will flag these two drugs with a warning and catch the pharmacist's attention before the prescriptions are filled. Great job with this blog, continue to hang in there!!!

  2. What is your suggestion about someone who is on Short Term Disability through their employer but got denied for Social Security and needs to get a lawyer to appeal the process to pay the lawyer?

  3. You may want to check out my blog post on Social Security Disability: http://potsgrrl.blogspot.com/2011/07/social-security-disability-and.html

    Usually attorneys who handle Social Security Disability claims work on a contingency basis, meaning they don't charge you an upfront fee and they only get paid a their fee if you win your Social Security case. Federal law sets the maximum limit of the fee they can charge, and it is a small price to pay if they do get you approved. Often you will have to front their expenses, like filing fees or postage, but that should not be too much.

    I would advise people to work with a Social Security Disability attorney in your state. You can call your local state or county bar association and ask for names of local attorneys in that field. There are large national firms that only handle SSDI cases. Also, ask them if you may qualify for Social Security Supplemental Income (SSI), which is based on poverty levels and not just disability status. You can apply for both at the same time. You don't have to have a lawyer to apply, but I would recommend it.