This is a hard post to write for a number of reasons….
1. When I started this blog, I promised myself that I would not insert politics into it. I just felt that it was necessary to focus on healthcare issues, survival, quality of life. I now realize that expecting to discuss healthcare without addressing politics is a little like expecting to take care of a baby without cleaning up poop. Political motivations and decisions impact all aspects of healthcare.
2. While I’ve always tried to be 100% honest about what’s happening to me during this journey, for the most part, I’ve not put things into dollars and cents. I grew up in the Midwest … discussing finances publicly isn’t something we do. In this instance, breaking down my financial reality, as uncomfortable as that is, is important.
3. The impetus for this post is a result of my concern over the abhorrent behavior of people that I loved, respected, and thought I knew. People I have always thought of with warmth. People I supported through their own mistakes and misadventures. People who, even though I knew had biases (as they knew of mine), I always thought would be, if not loving, at least accepting to others. People who I perceived as intelligent, curious, and loathe to unquestioningly accept stories, ideas, and concepts that are just wrong. People who have bought into the ugliness and rage that have become so pervasive in the world today. People who, in their anger and ignorance, support ideas that are not only detrimental to others, but to themselves.
4. Accepting and admitting my own vulnerability, my feeling of “aloneness,” is difficult for me to express much less discuss.
I guess, to sum it all up, I am exposing myself … my vulnerabilities … my worst fears. That is why this post is difficult. Why it is necessary, however, is that I can no longer listen to the half-truths, misconceptions, and outright lies that are perpetuated on social media (and in the minds of normally compassionate people) without exposing my experiences. You see, I am “one of those people” who you talk about when you throw out uninformed accusations regarding people utilizing government entitlements. I already hear the “we didn’t mean you” admonitions, but you are wrong … you do mean me. The love or affection that you feel for me may blur the lines, but if you read my data without understanding my history or the limitations intrinsic to the infrastructure of these programs, you would put me in the same category as you do all of those “welfare frauds.”
I am a college educated, middle-aged, middle class woman who is single, childless, and an experienced contract analyst. I am someone who people expect to be living the American Dream. I believe in paying my own way. I am proud and independent. However, I am also someone who is living on disability benefits and gets food stamps, medicare, Medicaid, and a “benefit” of $20.00 per month for something called “utility benefits.” I don’t know if I would pass a drug test — I’m on a lot of medications — but I definitely won’t be able to once I’m on medical marijuana which will happen before I am forced to stay in bed because of pain or get hooked on pain medications and live like a zombie.
When you look at me, you see someone who, visibly, is probably healthier than I have been in 20 years. I’ve lost over 130 pounds. I can, and most days do, walk three miles — it’s not pretty or fast, but I do it so that I can increase my chances of surviving longer and decrease the joint pain brought on by an autoimmune disease. Someone who should be working full-time, saving money, planning for retirement. What you don’t see is the pain, exhaustion, confusion, and weakness that comes from Stage IV cancer, psoriatic arthritis, diabetes, and hypothyroidism as well as the effects of the medications used to minimize the symptoms of those diseases.
You also don’t see someone who is living in poverty, staying in friends’ guest room, with no vehicle, and absolutely no savings … because I had to choose between living or dying…literally. You see, I’ve learned a few hard truths (particularly difficult for someone who has never had to accept government assistance, other than unemployment, much less been immersed in the healthcare system) …
1. Even if your employer agrees to continue your healthcare insurance once you go part-time, they don’t always have a choice. At the time of my diagnosis, I was working at the family business. My brother paid over $500.00 per month to cover my insurance. Even with those payments, I still had co-pays (Believe me, chemo co-pays are much more than doctor’s visits. Originally, I would have had to pay a couple of thousand dollars for my first round of chemo and more for the shots to keep my immune system up to speed. Luckily, I was eligible for assistance and ended up paying $50.00 per session.), deductible, and out-of-pocket costs (over $7,500.00+).
Once chemo started, I was exhausted and sick. I could no longer work 40 hours a week and missed a lot of work. Eventually, it was decided I would become a part-time employee. Within a week, I was notified by the insurance company that I was no longer eligible for insurance under their plan. My brother stepped up and said that he would continue paying the monthly charges to keep me on the insurance plan. He, the owner of the company, was told he couldn’t make that decision. I had 30 days to find other insurance.
2. Soon after notification that I was no longer eligible for the company health insurance, with the help of the insurance company, I was advised that I was eligible for Medicaid. Time to head to the Social Security Administration . I filled out the paperwork online and requested an appointment at one of the smaller sites rather than having to go into Fort Wayne, IN where I was told it was a chaotic madhouse. Lucky for me, I also had a friend who had recently gone through Medicaid / medicare with her family and she rescheduled her day so that she could go with me. (Remember, I was still recovering from a mastectomy, thyroidectomy, chemo, radiation, and systemic infections while trying to maneuver through the healthcare and government systems…something that’s difficult to do on the best of days. Never, ever, try to do this alone.)
On the day of the appointment, I collected all of my paperwork…doctors’ names, addresses, employer information, treatments, financial information, etc. and off we went…to wait. Even though I had an appointment, we had to sit in a packed room for over an hour. Finally, we were called to a small area with a desk and a couple of battered chairs that was off to the side of the room, but definitely not private … where I was going to expose almost every aspect of my personal life to what appeared to be an angry young woman who thought I was there to steal her personal funds. She demanded lots and lots of information which, either because of my career background as an analyst or my personal foibles, I definitely had. As a matter of a fact, I had more information than she needed or wanted. This seemed to make her even angrier.
I’m not aggressive by nature, but I am extraordinarily stubborn. Being interrogated and not being listened to, while being treated as a liar, ramped up my frustration. So, when she reprimanded me for including my psychiatrist’s information in with my other doctors’ (Even though the man was a psychiatrist, the main reason I went to him was to ensure that the many medications, supplements, and vitamins that I took did not have negative interactions … especially with my cancer medications.), I snapped and said, “He’s important because he’s helping me deal with dying!” Not necessarily true, but I hope I got my point across. That inquisition was so awful, I would prefer a colonoscopy (I’ve had two in the past couple of years.) over doing it again. I’m not a crier, but I was in tears by the end of that interview!
Ironically enough, after the interview was completed, the woman’s behavior changed drastically. She rubbed my arm, told me to hang in there, and said a Stage IV diagnosis doesn’t necessarily mean death because her old boss was diagnosed with Stage IV brain cancer and he was now considered “cured.” While that doesn’t sound quite right, I took it in the manner it was intended … she wanted to comfort and encourage me. She went on to say that she applied for Medicaid for me and, since it takes five months, yes five months of little to no income, for disability to start she also requested Supplemental Security Income (SSI) for me. It should be noted that any employment during this time is treated with suspicion and needs to be tracked and reported in detail or your “entitlements” could be canceled or delayed.
In order to receive disability, you must have a physician’s notification that you are not going to be able to work for one full year or you are terminal (Stage IV) AND you do not have an income of any worth. The paperwork is submitted directly to the physician’s office and turnaround time is dependent on the whims of that office. If they are busy or the paperwork is lost, it’s up to the patient to keep up with them.
Because I was sick and my ability to work was haphazard at best, I had to make a choice … continue with my employment and hope that I didn’t get too sick to work enough to support myself (I was not salaried) or make sure I worked under the maximum allowed (S1070.00 per month) and take disability. Of course, I would also have to find other insurance coverage if I was able to work. At that time, if I didn’t get Medicaid, I was eligible for insurance through the marketplace (Obamacare) and my oncologist was part of the plan. As it worked out, I wasn’t able to work much during the five months I was waiting for my disability to start anyway. 2. SSI, while helpful, is even less than disability. I believe I received right around $500.00 per month. Yes, I lived on $500.00 per month — only because I was staying with my brother and his family, he let me borrow his car, and helped pay for gas. Even then, the money didn’t go far when you had to pay for groceries, medication, and miscellaneous bills. For someone with as much pride and independence as I have, being so dependent was debilitating, but also a reality.
One advantage with Medicaid was that it would be retroactive to the first day of the month after I applied once it was approved. Something else I discovered that many people may not know, medicaid isn’t free. It varies from state to state, but while in Indiana, I paid about $3.00 per prescription for most medications. Some were more … test strips for diabetes were almost $40.00 per month. I realize that this doesn’t sound like much, but when you’re living on $500.00 a month, it takes a chunk out of your income. When I was prescribed new medications before I received my monthly SSI payment, I had to decide to borrow money, take out a pay-day loan, or go without. Each option took something from me, but I’ll admit that I’ve done all three on more than one occasion.
3. As of January of this year, after working from the time I was 16 years old, I was eligible for $1,340.00 (a little more than $8.00 an hour if I worked 40 hours a week) in monthly disability benefits — a third of what I used to make as a consultant. Admittedly, I don’t pay taxes on disability funds up to $25,000.00, but, even with not being taxed, there’s not much money in disability. Your benefit is based on your lifetime income and if all I am able to receive is $1,340.00 after 30+ years of working and making a decent living, I shudder to think of what people who weren’t so lucky receive. To put this into perspective, I paid almost this much in monthly rent on a studio apartment in Brooklyn, NY during the early to mid-2000s.
Originally, I was told by the Social Security Administration (SSA), that I could make an additional $1070.00 (gross) per month without losing my benefits. However, I was also told that I could not start my own business because if the IRS deemed my business “worth” more that $2000.00 — even before I made a dime — I could lose my disability and my Medicaid benefits. I still haven’t gotten an answer on whether or not “consulting” would be considered self-employed. I was further informed that I could not go back to a part-time data entry position I held because it paid per document or per page and would be viewed by the SSA as a job which qualifies for “perception of income” determination. Basically, even though I may have made $7.00 or $8.00 an hour (I’ll admit, some people could make much more, but I’m not particularly speedy), the government can step in and determine that I have the potential to make whatever they deem possible and I could lose my benefits … once again, even if I was making much less than they determined was possible.
Many people would say, “So, just get a part-time job at Wal-Mart.” Easier said than done. First of all, how many of you would hire a terminal cancer patient…even if they look fine? I don’t blame you. I don’t always know how I’m going to feel from day-to-day. There are monthly treatments and blood draws that I cannot miss. A strenuous day could put me in bed for a day or two. Hell, whether I like to think about it or not, my status is “active, but stable.” That means that my cancer has, so far, been contained…until it’s not … and I would be unable to work. I’m a risky bet no matter how much I want to work.
Flexibility is vital, at least for me, but difficult to find. Working on my own is a perfect solution, but not one that the government accepts. I don’t even blame them. The system is antiquated. Medicine is outpacing the programs set up to help it. Treatments for cancer patients have improved and more Stage IV people are living years rather than months. It’s time for massive overhauls in the process. I don’t know anyone who wants to spend whatever time they have living in poverty because that’s the only way they can get treatment. I loved working and want a normal life back … at least as much as possible.
4. After two years of being deemed “disabled,” you are eligible (required, if you are on Medicaid) for medicare. Medicare limits the additional amount I can earn (over and above disability) to a little over $800.00. I have spent a significant amount of my career working as a contracts analyst and even I find information regarding medicare to be convoluted and just plain uninformative (“clear as mud” comes to mind). To the best of my understanding, Part A is “hospital coverage.” If you work, you accrue points. If you reach a certain number — I think I was told 40 — you have built up enough points to cover the cost of Part A and you pay nothing. Part B is for “doctors’ visits, etc.” My cost for Part B is $134.00 per month. Part C, which I don’t have, was explained to me as an option to allow a 3rd party find the best plan for you. I was told that, if I chose Part C, I would be running the risk of selecting an option that wouldn’t include my doctors or hospitals … if I just selected the default option offered by SSA, I would be covered by all groups that accept medicare. Yes, I realize that their explanation was self-serving, but, at this point, I had to make quick decisions or risk the chance of losing insurance. Part D is “prescription coverage.” For the low price of $33.10 per month, my medications will only cost me $4,100.00 per month ($5,200.00, if you include my cancer medications.)!
I was told that I was no longer eligible for Medicaid because I had medicare. However, the cost of my medications would be 4 times more than my monthly disability payment. The most expensive medications were the ones that I need to manage pain and live. The SSA representative was very helpful … she just couldn’t help much within the structure of the medicare system.
After many, many telephone calls, I got lucky and found a representative at the CT Department of Social Services who couldn’t help me, but could direct me to someone who could. He explained that I may be eligible for Medicaid C – low-income, which would assist with prescription costs. It took several days, but I finally found the section on their website that allowed me to apply for Medicaid C (I never did find the right options that would allow me to get out of voicemail hell and actually talk to a real person.).
I recently received a letter from medicare that said I qualified for a program that would allow me to pay less than $9.00 per prescription. I have no idea how I got it or where it came from, but, so far, the one medication I needed only cost me $2.00. I will know more once I receive the paperwork on my cancer medications (Faslodex and Xgeva) and autoimmune disease (Otezla) … the most expensive medications. I also received notification from the CT Department of Social Services that I qualify for a program that will cover the cost of my monthly Medicare, Part B charges…contingent on the fact that I remain in poverty.
Please don’t get me wrong. I am very grateful for the assistance, but I am angry that my hands are tied in terms of being able to work and stand on my own two feet without losing my safety net in case my cancer spreads rapidly. Why can’t I work and, if I make more than the maximum amount allowed, deduct it from my monthly disability payments or add to my annual taxes rather than drop me from programs like medicare which I am dependent on for living? I would think that type of option would benefit everyone. While congress is messing with Obamacare and not offering any alternative options other than those that will make it impossible for me to pay for coverage, I am forced to live a half-life. I actually LIKE to pay my own way. I don’t want to live off the government, but, in order to live, I am forced to do it anyway.
5. When I was completing my online application as part of my insurance assistance, I was asked to complete a form for SNAP — food stamps. My annual income is around $16,000.00 (disability). I am eligible for $16.00 per month for food stamps. For a while, I thought, it isn’t worth the time and effort to apply for it — I used to spend more than that every day on coffee, snacks, and miscellaneous junk. Now, I recognize that every little bit helps.
6. After being diagnosed with Stage IV, being told that my original oncologist couldn’t do anything more to help me, and relocating to New Haven, CT for a second opinion and treatment; I starting looking for an apartment. Again, I was extremely lucky to have incredible friends who invited me to stay with them while I was getting treatment and finding a place to live … which has now turned into a 2+ year search and counting. Unbeknownst to me, I wouldn’t be able to find an apartment with my income. In New Haven, even a room in an apartment with a shared kitchen and bathroom, would cost more than $700.00 plus … and that doesn’t include utilities. Living further out is difficult because I don’t have a vehicle and need to be near mass transit.
I was looking into Section 8 Housing. Financially, I qualified for it, and my friend knew someone who offered housing. Unfortunately, even though I qualify for it, I would have to join a lottery and be selected in order to get on the list for available housing … something that, according to a HUD representative, would be more unlikely than my actually winning a state lottery!
These, my friends, are just a few of my hard truths. I’m not asking for anyone to feel sorry for me or trying to justify my situation. I’m not asking to get a free ride or trying to say there aren’t people who con the system. I’m just saying that not everything is as it seems. Based on my own experiences, I just don’t see how anyone is getting rich off of these programs. I don’t see how anyone would think that cheating the system is a viable way to live. There are often many sides to a situation. Lots of shades of gray. Not everyone cons the government and, at least for me, requirements for these entitlements were not easy. My acceptance into the programs required being poisoned, losing body parts, and a death sentence … not to mention forced poverty, humiliation, begging, massive amounts of paperwork, and the continual fear of it all going away… because someone, somewhere, deems that I don’t deserve to live. Please remember me when you are posting all those memes about us lazy fucks who don’t want to work and just live (in poverty) on your hard-earned taxes.