Helpful Hints for Surviving PsA

I thought we should start a thread about practical solutions for everyday (and not so everyday) problems associated with PsA. So to start us off:

If you have student loans, but are no longer able to work because of your PsA, there is a solution! I had over $60k worth of student loans for a master's degree I can no longer use. I was in default on those loans because my husband's income is only enough to pay rent, utilities, food. So I called Sallie Mae to ask about a forbearance or SOMETHING...some kind of solution to the problem. I happened to get a customer service rep who actually cares (miracle of miracles!), and she mentioned a program that provides forgiveness for student loans for people who are totally and permanently disabled (TPD). This forgiveness wipes the loan completely off your credit report, so my default on those loans will no longer affect my credit score either. I explained to her that my disability application was in limbo, so I wasn't "technically" disabled as of yet, but she told me that they send paperwork for your doctor to fill out with the application, and that it was actually better to use the paperwork from the doctor rather than the disability approval (something about review times of SSDI). So I had her send me an application, filled it out, had my doctor fill out his portion, and voila! I no longer have student loans. The process took about 6 months, but they put your loans into forbearance during the process so you don't have to make payments and there is no penalty. WORD OF CAUTION: Keep in mind, though, that if you get a TPD forgiveness you are prevented from applying for any form of financial aid for college for yourself - including Pell Grants (or your previous loans will be reactivated). Also, the total amount of the loan they forgive is considered "income" for that year. Basically, next year I will not receive an income tax return, and may owe some income tax (although with the earned income credit and other tax credits I can take, the amount should be minimal.) My husband and I are saving back a little bit of money each month to offset any income tax I may owe at the end of the year. I have to tell you, the relief of not having to worry about paying those student loans has removed a very heavy burden. The other good news is, this forgiveness will not affect my children's applications for financial aid for college (I have a senior in high school, so this was a concern for me).

Wow! That student loans information may certainly help folks in a tight spot.

I recently found that the US National Parks offer a free lifetime Access Pass for the disabled. There is a one time fee of $10 if you apply by mail or free if in person at a park facility.

The state of California has a similar deal for the State Parks. It is a Lifetime Disabled Discount Pass for $3.50

Great info - thanks for sharing !

I'm re-posting what I posted on another thread:

I found this list of health care financial assistance programs and thought it might be useful to post.
  • The Partnership for Prescription Assistance
  • Association of Maternal and Child Health Programs
  • National Patient Advocate Foundation
  • Families USA
  • Patient Advocate Foundation
  • Affordable Care Act Subsidy Children’s Health Insurance Program
  • National Organization for Rare Disorders

Posted by dandlyons:
The Assistance Fund855.845.3663The Assistance Fund is a leading nonprofit organization created to make access to medications a reality for patients who are critically or chronically ill by offering financial support for co-pays, deductibles and insurance premiums.

Chronic Disease Fund877.968.7233

The Chronic Disease Fund helps underinsured patients with chronic disease, cancers or life-altering conditions obtain the expensive medications they need. CDF assists patients throughout the United States who meet income qualification guidelines and have private insurance or a Medicare Part D plan but cannot afford the co-payments for their specialty therapeutics.

There is also a website: Rxoutreach.org that has prescription medications for a fraction of their normal cost. It isn't free, but it is a huge help for those of us who take handfuls of prescriptions. Those things add up. Another hint, though, is they do have methotrexate, but the savings is negligible on that particular medication. If you apply for their services, you will need to get a 3 month prescription for each medication from your doctor in order to participate, as they only provide them 3 months at a time. The application is super easy, though, so I highly recommend everyone who has no prescription coverage or are underinsured for prescriptions.

This is great information. I have a friend who doesn't have insurance and thank goodness isn't ill. But recently she cut her hand and needed antibiotics. I'm going to send her this info.

tmbrwolf329 said:

There is also a website: Rxoutreach.org that has prescription medications for a fraction of their normal cost. It isn't free, but it is a huge help for those of us who take handfuls of prescriptions. Those things add up. Another hint, though, is they do have methotrexate, but the savings is negligible on that particular medica ition. If you apply for their services, you will need to get a 3 month prescription for each medication from your doctor in order to participate, as they only provide them 3 months at a time. The application is super easy, though, so I highly recommend everyone who has no prescription coverage or are underinsured for prescriptions.

These are great pieces of information! Lets keep them rolling in. I wish there was a clearinghouse of information for people with disabilities...and there kind of is. Dialing 411 from any phone will connect you with your state's information. There are hundreds of nonprofit organizations in each state that help with everything from free classes to get a GED to free medical clinics to everything else under the sun.

I am in Oklahoma City, and there are two free medical clinics that I have found so far. They also have in-house pharmacies that provide some medications completely free. I've also found free or sliding scale dental clinics, women's health clinics, and eye clinics here. I'm sure there are others in different states.

If you have an emergency expense (an unexpected funeral, a huge electric or gas bill, car repairs that must be done in order to keep a car road-ready that you need to get to work, or others), Catholic Social Services have programs that can help, even if you are not Catholic.

How does one survive stairs in the home? My knees are swollen a miserable.

When my knees were very inflamed (about 5 years where stairs were nigh impossible), I made sure I made only two stair trips per day: once down in the morning, and once up to go to bed (my bedroom was on the 2nd floor). On both levels I had medications, makeup, hairbrushes, a sweater if I got cold, slippers, splints, whatever I could possibly need.

In the morning I would make sure whatever I could possibly want (the current book I was reading, etc), put it in a stack or basket (or you could use a small backpack) to bring it downstairs. I would reverse the process in the evening.

Pigeonfury said:

How does one survive stairs in the home? My knees are swollen a miserable.

Truthfully? We are putting our 3 story house on the market and are looking to buy a one story. But until we get that done - yes, I do what Marietta does...having a basket or carry bag to use is good so you can carry it all at once and still have hands to transfer weight on your hands on the handrails.



Pigeonfury said:

How does one survive stairs in the home? My knees are swollen a miserable.

We are renting, and one of our absolute must-have criteria was a one story house or a two story with a bedroom/ full bath combo on the first floor so I wouldn't have to do stairs. When I first moved to OKC, we stayed with my wonderful sister-in-law and her family for 6 months, and ALL the bedrooms (and shower facilities) were on the second floor. It was miserable. Like mentioned above, I made one trip down and one trip up per day and that was it. Instead of a basket, I used a cardboard box. Loaded up what I would need for the day in the box, then slid it down the stairs (of course, not with anything breakable in it). Then when he got home, and after dinner, my husband hauled the box back upstairs.

I am a purse hoarder, so I pulled out a purse I bought a really long time ago (has a tie-dyed peace symbol on it if that is any indication of its relative age) that was really big, fabric (lightweight), and has a zipper closure so that I could carry my nook and anything else that might have gotten broken (along with my keys/wallet/chapstick/etc) in it. It slung over my shoulder and across my body easily, then I used a cane and the stair rail to keep as much weight off my left knee as possible (thats my really really really bad one). On really horrible days when neither of my knees worked, I sat and gently slid down the stairs or stayed in my room. If I did go down, my husband pretty much half carried me back up. I am so glad to be in a one story, but there are steps to get in the front door from the driveway, and I HATE them. My husband took pity on me and added an extra layer of stepping stones so that the steps ended up being 1/2 steps and that helps tremendously.