I lost thousands of dollars of financial assistance because I didn’t understand the system

August 30, 2014

I grew up in a middle class family and lived a middle class lifestyle after I left my parents’ home. I earned a decent enough living. There was a lot I couldn’t afford, but I never worried about paying rent or buying food.

Then I got sicker.

It’s been a roller coaster since I left my job almost 3 years ago. I had short term disability benefits, then nothing, then long term disability benefits, then nothing, then social security disability benefits. During the long periods of “nothing” I knew there was the possibility of getting long term disability benefits and/or social security disability benefits (SSDI.) I didn’t know what I’d end up with, so I didn’t know how to plan. And besides, I kept hoping that I’d return to work soon.

Now I have SSDI and no thoughts of returning to full time work very soon. I hope to do some part time work to supplement SSDI, but even that has to wait until I feel a bit healthier. And I just can’t live on my current benefit and keep my current lifestyle. After paying for food, transportation, utilities, and, especially, medical expenses, I have about $100 per month left for rent. Obviously, that won’t work. Even if I got roommates. So what are my options?

  • I could move in with my parents. They’d take me in. I’d have to move an hour away from all of my friends and doctors and be a 30-something living with my parents, but it’s an option.
  • I could buy a condo. I still have savings from back when I worked. Unfortunately, I’m spending them on rent now. Instead, I could buy a condo. But then I’d have HOA fees ($200-300/month) and upkeep, and I don’t have the budget for that.
  • I could buy a house. But then I’d have a mortgage and upkeep. No good.
  • I could buy a 3-family house. I could live in one apartment and rent out the other two and use the rental income to pay the mortgage and upkeep costs. This has some appeal. I’ve looked into it. But 3-family homes are really expensive around here, and even if I felt comfortable taking on such a big mortgage, I wouldn’t qualify for it. And I’m not ready to move out of the Boston area.
  • I could push myself to go back to work before I’m ready. But obviously that has disaster written all over it.
  • I could just keep on spending my savings and hope I’m well enough to return to work before they run out.

I’ve been sort of stressing about this. I feel like there should be another option. And then talking to a fellow disabled friend yesterday, I found it: financial assistance! When I left my job two years ago I looked into my options for help, but I was stuck trying to interpret things online myself. I didn’t know who to ask for help. I checked around with friends, but it wasn’t helpful. And since I didn’t know what my financial position would be going forward, I gave up. Bad move.

On Tuesday, as soon as the long weekend is over, I’m going to visit my local house authority and sign up for section 8 housing. The waiting list is long, and I’m pissed as hell that I didn’t sign up 2 years ago. I could have already been on the waiting list for 2 years! Since the wait is longer than that, I should have done it. But I didn’t realize. I thought that if I got long term disability benefits, I’d get kicked off the list. And I didn’t want to have to live in section 8 housing. As it turns out, those LTD benefits would have still had be below the income limit. Who knew? And many section 8 vouchers allow you to live in any housing, as long as it meets certain requirements (generally that it’s around the median rental rate for your area, and not some huge luxury unit, and that it’s well maintained and habitable.)

And then my friend told me more: I qualify for fuel assistance! Having heat isn’t optional in Boston. Without it, pipes freeze and burst. Even more, you can freeze to death. You must have heat. And apparently I can get help paying for it, even though it’s included in the cost of my rent! She also said she gets help paying her electric bill – that had never occurred to me! Best of all, she told me where to go to find out more about these resources.

Since it was a Friday evening, I couldn’t call any of the offices, so I went online. Now that I knew where to look and what to look for, there was so much information! She got the information from her local housing authority, so I found their web site, then the site for my town’s housing authority, and I just followed the links from there. I still need to talk to someone to get questions answered, but boy do I feel better. If only I’d done all of this two years ago, though! I’m kicking myself that I didn’t.

I’m including below some of the useful links I’ve found so far. Clicking these links will open up new windows. As I find more, I’ll add them later. These are for Massachusetts. If you’re in the U.S., maybe these will help you find similar resources in your own state.

I’ve already missed out on thousands of dollars of financial assistance by not signing up for all of this two years earlier. What about you? If there’s financial assistance you could be getting, don’t make my mistake! Sign up now! And please help me make further mistakes by telling me what else I should be doing!

What other financial assistance should I be looking for? I welcome any and all advice!!

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Section 8 centralized waiting list: https://secure.massnahro.org/Section8LHA_Internet/WebPages/Registration/Home.aspx

Types of rental assistance: http://www.mass.gov/hed/housing/rental-assistance/

Fuel assistance agencies: http://www.mass.gov/eohhs/docs/dta/c-dta-fuelassist.pdf

Fuel assistance overview: http://www.massresources.org/liheap.html

Section 8 explanation: http://www.masslegalhelp.org/housing/types-vouchers


Pain cravings

August 29, 2014

It starts with chocolate. The next stage varies, but it always starts with chocolate.

I once read about why chocolate helps with pain. It affects some neurotransmitters or something. Mostly I think it’s a distraction.2014-08-29 14.49.20 I really like it. And that’s probably why I crave sugar, too. Two days ago I opened a bag of kettle corn. If I’d had more sugary foods, I’d probably have eaten those, too.

Then there’s the craving for fatty foods. I don’t eat a lot of fatty foods normally, and when I do, it’s in small quantities. But as the pain has gotten worse, I’ve really wanted fatty foods. I asked a visitor to go to a place nearby that has gluten-free french fries and get me a large order. In hindsight, I should have asked for 2.

Since I can’t leave the house, and I don’t keep a lot of sugary or fatty foods at home, pain cravings always leave me in a bind. I know from experience that I can eat a lot of this junk, but be thinner than usual when this current wave of worse-than-average pain finally subsides. I think that’s why I crave fatty foods – my body is looking to make up for the extra calories I’m burning off just by being in pain. Whatever the reason, I just wish I could walk down the street to buy a bag of Cheetos. Unhealthy? Yes. But will they comfort me? Yes!

I’ve been wondering, does anyone else get food cravings when they’re in pain? If you do, what do you crave? And does it help physically, mentally, and/or emotionally?


When healthcare talk is traumatizing

August 24, 2014

I’ve been noticing a disturbing trend and I’m not sure what to do about it. It’s been brewing for a while, but a couple of conversations recently made me realize how problematic it’s become.

First there was the conversation with a volunteer for one of the gubernatorial candidates. We were in a social situation, but when I asked about her volunteer work, the conversation turned to that. She started talking about his plan to make our state a single-payer healthcare system. I wanted to calmly explain why I didn’t think this would work. I remained mostly (but not entirely) calm on the outside, but on the inside I was boiling, thinking about the many injustices I have faced within the system and how the government certainly didn’t make it any better.

The second conversation was a few hours ago. A half dozen of us were hanging out after lunch, chatting. Then one woman asked us if we’d ever faced discrimination in healthcare due to our sexual orientation (we’re all bisexual.) This isn’t something I’ve experienced, so it was safe territory, right? But just hearing people talk about their experiences was very upsetting to me. It made me think about all of the similar experiences I’d faced that weren’t discriminatory, but were hurtful nonetheless. It made me want to share my own stories that were about healthcare, but that had nothing to do with biphobia. As they talked, I remembered incidents that I’d forgotten about. I thought about recent incidents that were still fresh.

And I got upset.

Again, I stayed mostly (but not entirely) calm on the outside, but inside I was simmering, ready to explode like a volcano. I wanted to yell, to cry, to ask for understanding, to plead for someone to help.

That’s not normal. It’s not healthy. I know it. But I don’t know what to do about it. I saw the warning signs of this many months ago and I starting looking for a therapist who had experience with chronic illness issues. But then I started having health insurance uncertainties, so I decided to hold off until they were settled. Well, they’re finally settled, but now I have a different problem. For personal reasons, I don’t want to see a therapist at one of the major hospitals. I would only see a private practice therapist. And private practice therapists generally don’t take medicare and medicaid for health insurance. And I can’t afford to pay out of pocket for someone.

The truth is, I probably should have been seeing a therapist before now anyway, but I’ve always managed to handle these things on my own. I tried therapy a few times and never got anything out of it. I’m pretty self aware, so I made do. But this is different. I don’t know how to handle the anger, frustration, fear, and desperation I feel whenever anyone talks about doctors, healthcare, or health insurance. Feeling these emotions about my own situation is bad enough, but I shouldn’t be feeling them whenever the topic is broached in a way that has nothing to do with me. I should be able to talk to a friend about their own medical condition without this kind of trigger response.

I just wish I knew how to make that happen.

What about you? Have you felt this way at all? Do you have trouble talking about other people’s medical issues? Do you know of any ways to get inexpensive mental health care in the U.S. or, even better, in Massachusetts? Please comment below and let me know about your experiences.


The difference between being a mystery and being a case study

August 17, 2014

When my doctor asked if he could discuss my case in the doctors’ case study meeting, I felt sort of glad. That’s been hard to explain to my healthy family and friends, but to me, it makes perfect sense.

For years my symptoms were dismissed. I was labeled a mystery. One doctor told me there was nothing anyone could do to help me and I should stop seeking medical help. The attitude could be summed up as, “If we can’t label it, we’d rather not think about it.”

The first time I felt like a case of interest was about six years ago. I’d had a biopsy done of some skin on my breast. They thought it could be cancer. I waited and waited and waited for the biopsy result. Finally, late on the day the result was due, I called the doctor. She apologized. It had taken several different pathologists to figure out what I had, because it turned out to be something very rare. It was benign, just hard to label. When I went back to get the stitches out, she explained that the pathologist had been excited to see this rare thing he’d only ever read about. It’s so rare, most pathologists don’t get to see it. And she asked if she could take a picture of the remaining patch on my breast for his files.

The thing is, at that point, we already had a diagnosis. The mystery was solved. This time it’s different.

Before I left my doctor’s office the other day, he asked if he could discuss my case in their case study session. He promised he wouldn’t use my name, but that wasn’t what I was thinking about. I was thinking about why he wanted to use my case. I had a rare confluence of medications, symptoms, and test results. I had diagnosed sleep apnea that was perfectly treated with a CPAP machine, but after a couple months the CPAP stopped working for me. The results showed odd breathing patterns. I had recently gone off of my progesterone prescription, which can be known to have an effect.. The timing is rare enough, but I took a bio-identical progesterone, which is very rarely prescribed. To see a confirmed case of sleep apnea produce these odd breathing patterns would be interesting on its own, but to have the progesterone prescription affecting this was unheard of.

On the one hand, it sucks to be in a situation like this, where there’s no known solution. On the other hand, my doctor isn’t dismissing me. Quite the opposite: he wants to study me. He does research in addition to seeing patients, so this could be to my advantage. I’m going to have another sleep study. Usually sleep studies are supervised by technicians, but mine will be supervised by the two doctors I saw on Friday. They do this with very few patients, and while I wish I didn’t need the special treatment, I’m very grateful to be getting it.

My first choice would be to have my breathing problems resolve themselves. But since that’s very unlikely, having a top doctor monitoring me while I sleep, adjusting CPAP settings on the spot, trying different mask types, and doing all he can to find a cause and a solution to this problem is by far the best second choice I could have. Hell, I would never have even thought such a thing was possible.

After so many doctors dismissing me because I’m a mystery, I’m thrilled to have a doctor who would rather study me than dismiss me. So I’m glad to be a case study. Maybe it means I’ll finally get some answers.


What it means to have a respectful doctor

August 15, 2014

I learned a while back that I have to be an educated patient. It’s the only way I’ll ever see any improvement in my health.

My health is too important to just assume that every doctor always knows what’s best for my specific case. After all, my endocrinologist may know a bit thyroid issues but really specialize in something else. My rheumatologist might know plenty about rheumatoid arthritis but nothing about my unlabeled connective tissue disease. Or they may know a lot about my conditions, but not enough about the other specialties to figure out how they all connect. No matter how you look at it, I have to be educated.

Unfortunately, some doctors don’t like this. They don’t want to take the time to answer questions. They don’t like being challenged. Most of us have experienced these kinds of doctors.

But then there are the others.

There are the doctors who appreciate my effort. They like talking to a knowledgeable patient. They take the time to answer questions and explain terminology. They maybe disagree with my assessment, but they don’t dismiss it out of hand. They consider it.

Today I saw one of those doctors. I haven’t seen many over the years, but he’s one of them. Dr. T is hard to see. He’s one of the top in his field, so there are long waits to see him. He was looking at charts of my test results today. Actually, three people were looking at the charts: Dr. T, Dr. D who works with him, and a medical student (it’s a teaching hospital, so this happens a lot.) I quietly stood behind them to see the charts, too. Suddenly Dr. T turned to my empty chair, saw me standing behind him, and gestured me over – he wanted me to see my charts! I was shocked, but then he did something that completely stunned me – without being asked, he began to explain the charts. I didn’t know how to read them, and I very much appreciated this explanation.

A little while later Dr. T and Dr. D mumbled to each other. Then they began to explain the medication they wanted me to take and exactly why they wanted me to take it. Unlike doctors who just shove a patient out the door with a prescription, these two wanted me to understand the plan. I explained my discomfort with the potential side effects and Dr. T got slightly impatient. He said that if I want to treat this issue, none of the options are great and I’ll have to make a choice. I agreed, and pointed out that my health is my top priority and that’s exactly why I was questioning everything, because I wanted to be able to make an informed decision. He no only supported me by answering all of my questions, but he even seemed to respect my position.

I left that appointment feeling good about our plan for figuring out the cause of my new symptoms. I felt listened to and respected. I felt like I was a part of the plan for taking care of my body. But mostly I felt that I had an ally, someone who would be there when I needed help and would do his best to provide that help. And isn’t that how we should always feel about our doctors?

Have you ever had one of these doctors? Have most of your doctors been this way? What has your experience been? I’d love to hear about your experiences in the comments!


Period period period period. Period.

August 11, 2014

Approximately half of the population on this planet gets, has gotten, or will get a period. And yet for some reason no one talks about it. What the fuck is up with that?

A couple weeks ago I was eating lunch with some follow chronic illness folks. Between us we had two cases of hypothyroid, Hashimoto’s disease, endometriosis, neuropathy, herniated disks, PCOS, 2 cases of Celiac Disease…. and a bunch of other diagnoses. We were 4 women and 1 man. At one point I turned to my friend with endometriosis and excitedly told her that I’d gotten my period the week before. She congratulated me. Then I explained to the others that I was excited because before that I hadn’t gotten it for 7 or 8 months. The women congratulated me. The man squirmed. Now, I can understand a teenager being uncomfortable, but a man in his 50s or 60s who’s been married for years? I just don’t get it.

There are plenty of situations where it’s not appropriate to discuss my period. I’m ok with that. But if it’s ok to talk about my chronic pain, then I can talk about my period. If it’s ok to talk about my nausea, then I can talk about my period. If it’s ok to talk about being pregnant, then I can talk about my period. And I will if it’s relevant. I won’t censor myself on this.

There are cultures where a woman* is shamed for having a period, where she’s considered dirty. In some cultures, men can’t touch women while they’re having their periods, even married couples. In some cultures, girls have to cover their bodies from head to toe when they get their periods. In my culture here in the U.S. it simply isn’t discussed except in the patronizing and dismissive form of an upset woman being referred to as being “in her time of the month.” Now, it’s true that some women get more emotional around the time of their periods. Not all women do. And women, like men, can feel emotions at other times as well. Imagine that!

The squirmishness can’t be from the blood. Sure, some people have issues with blood, but that usually involves seeing the blood. Most people don’t get as squirmish when I mention a bloody nose as they do when I mention my period. Hmm. So maybe it has to do with discussion of women’s bodies. No, it can’t be that general. No one seems to mind if I mention something about my arm. So maybe it has to do with women’s reproductive systems? Could be. Legislators are regulating birth control pills and abortion but not condoms or Viagra. Many citizens think this is ok. Others may be against it, but won’t discuss it. The Vagina Monologues came about because many people won’t speak the word vagina. I admit, there was a time when I was embarrassed to say the name of the show. But by my early 20s I was over it. I wish everyone else would get over it. Because women have vaginas. And, oh-so-shockingly, women have periods!

Let’s get something straight: every single person on the planet came into being because of a woman’s fertility. Think about that for a moment. Has it settled in? Are you ready for the next revelation? Part of a woman’s fertility cycle almost always involves getting a period. Think about that a bit. Makes sense, right? A woman’s period, after all, has to do with an unfertilized egg shedding the uterine lining. They’re connected. So everyone should be grateful for women’s periods! Would you have been born if your biological mother had never had a period? Maybe. It’s possible. But it’s not likely. So be glad that women get periods! Period.

Ok, it’s your turn. Speak up! How do you feel about this subject? Do you think women should be able to openly mention their periods, especially in medical contexts, without people saying it’s gross? If you have two x chromosomes, do you discuss your period if it’s relevant? If you have a y chromosome, how do you feel when women discuss their periods?

*I’m referring to cisgender women, for the sake of simplicity. Obviously trans women don’t always have vaginas. And trans men might have vaginas. And there are plenty of genderqueer folk who don’t identify as either men or women.


Dreaming of meeting people to date

August 7, 2014

I’ve never been followed by legions of suitors. That’s just not who I am. I’ve seen it happen on tv. I’ve seen it happen to friends. But it’s never happened to me. And I’m ok with that.

But there was a time when I dated. Maybe I didn’t date often. Maybe I didn’t go out with a new date every week a la Sex & The City or Friends. But I dated.

But that was in the old days, when I was healthier. When I went out. These days, I stay in most evenings. Evenings are tough for me. When I do occasionally go out in the evening, it’s a real effort, and I only do things I know I can handle, like quiet evenings with friends at someone’s house. This is fun, but it doesn’t exactly lend itself to meeting new people. Sure, I’ll occasionally meet someone new, but usually my friends’ friends are already in relationships. What I need is to really go out. I need to attend meetup groups where I can meet single people. I need to get used to flirting again. I need to feel comfortable enough in my body that I’m not constantly wincing in pain.

I’ve worried in the past about meeting someone who could handle my health issues. I’ve finally come to believe that there are people out there who would not see my health problems as major obstacles. But how will I find those people? I know plenty of people who were ill before they married their current spouse, but usually they met their spouses when they were well enough to leave the house. Where would I meet someone now? At the grocery store? In a doctor’s waiting room? Sure, those are possible, but I’m not exactly counting on them.

After years of fearing any sort of commitment (for reasons completely unrelated to my health,) I’m finally ready to be in a serious relationship. I’m ready to meet that person who makes my heart flutter. If only I could leave the house enough to actually find them.

Note: I sincerely hope that one day my regular readers will see me writing about improved health, dating, a relationship, travel, a job of one sort or another, and the other things I’ve been hoping might still be possible some day. I haven’t lost that hope, even if some days I feel a bit discouraged.


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