Falling through the gap between health and finances

A couple weeks ago I fell. This isn’t surprising really – like most people with physical disabilities, I fall all the time. And usually I just get back up and go on with my day; only a new bruise to show for it. But sometimes it’s worse than just a bruise, and this was one of those times. I was carrying Cruz to his crib for a nap. Starting into his room, I tripped on a large toy. I hit the door frame hard with my forearm, then a bookcase with the other arm. Trying not to land on him or slam him into the wall, I flung myself in the other direction and landed on the top side of my thigh, on the floor. Cruz’s leg was under me and he was crying. Still lying on the floor, I grabbed his leg and tested it to make sure it wasn’t broken. He was ok though, after a few second he got up and ran to play with his toys.

I lay there for a moment, a sharp pain running through my right arm and left hip, and my left arm aching. I got up and let Cruz play for a moment, and then laid him in his crib. I had been planning to return to my blogging, but I was pretty shaken up from the fall so I laid on my bed instead.

As the day went on, I started to wonder if I had broken my arm. I could barely move my fingers, I couldn’t turn my arm, and now I was having pains like needles stabbing my arm. My thigh was hurting too, and had a growing, giant bruise and was noticeably swollen, but most of it was in an area I don’t have any feeling in, so it didn’t bother me much.

Was it worth it to go to the emergency room? I don’t have insurance. I pay out of pocket for my doctor visits and monthly prescriptions. Was it worth paying for the ER, the doctor, and the X-ray out of pocket, possibly only to find out that I had bruised the bone?

But what if I didn’t go and it was broken? It’s my right arm. Which is even more important to me than most people: my left hand is pretty affected by my CP, I can’t hold a pencil or write, or do much of anything with it. To give you an idea, in high school I had to drop American Sign Language because I couldn’t do most of the signs that required two hands. In middle school I sprained my right hand and couldn’t write with it. When I (finally) turned in a Language Arts assignment written left handed, the teacher got mad and said that it looked like it had been written by a two year old and how was she supposed to read it.

So, back to my arm. It didn’t really feel broken, but then again, I didn’t really know what broken felt like. With CP I have some sensory issues. Pain comes across more like agitation, at least when it’s new. And every time I’ve broken a bone I didn’t know until way later. When I was 7 I tripped and hit the cement on the way to PE. It hurt, but with the rest of my class watching, I held back the tears and kept walking. Then I did PE as usual. A few days later spring break started, and my little brother and I flew to California to visit my dad. We went to Disneyland and Sea World that week. When we got home from the trip I guess I was still complaining about my knee, or maybe it was swollen, because my mom decided to take me to the doctor, and we found out I had a broken knee cap.

When I was 10 I was playing tag with some friends and I fell, catching myself with my pinky. My mom put some frozen broccoli on it, but the next day we went to the doctor and found out it was broken.

When I was 22 I went into the ER for severe back pain. They did an X-ray, and while the X-ray didn’t show a reason for the current back pain, it did show something else: I had a broken vertebrae, but they could tell by the way that the edges were rounded instead of jagged, that it had been that way for years. They said the way and the place (above the shoulder blades) it was broken looked like it was from falling down stairs, or falling in a similar way. The last time I had fallen down the stairs, or fallen on my back, was when I was 15 – seven years before.

I had declined to go to the ER because I knew it was a lot of money and a lot of hassle, and it did hurt, but I felt like I was more shaken up and scared than anything, so I just lay on my bed for a while.

So, all that to say, I didn’t really feel like I was a good judge of broken bones. Especially given the stabbing pains and inability to move my arm. Everyone I talked to thought it might be broken. I waited all day, but at 8 PM, I decided I didn’t want to sleep that way, and potentially move around a broken bone that would have to be pushed back into place or reset, so we went to the ER.

After a torturous X-ray, having to twist and turn my arm and hold it in place, we found out that it was not broken. Which was kind of bittersweet, since now I felt like the trip was pointless. The doctor handed me a copy of the X-ray, said “It’s not broken, it’s just bruised or sprained, stay off of it.” And walked out. 5 seconds. I can’t wait to see how much I’m going to get charged for that.

I feel like I, and other disabled people, should not have to have such an inner battle about whether or not to go to the doctor or ER if we think something is really wrong. That we shouldn’t have to be so terrified of either enduring a potentially unnecessary hospital bill or endangering the health that we have.

Now, before some of you make the judgment that I made a bad decision in not having medical insurance, consider this:

  • I had to leave my job, which we had insurance through (the only job I’ve ever had that offered insurance) because I could no longer work.
  • Though I am on Social Security Disability, I (and all SSD recipients) am not eligible to purchase a Medicare plan until I’ve been disabled for 24 months. I find that ironic. A: I’ve been disabled for 28 years. In fact, my parents received SSI for me when I was a kid. B: Disabled people get hurt more, and have more ongoing medical issues. What are we supposed to do for those two years, and why is this necessary when we’ve already been determined to be disabled? *Note I said purchase Medicare. It is not free.
  • When I shopped for individual insurance plans, they priced at about $500 per month. That of course does not include deductibles, copays, and other costs not covered by insurance. If you had to choose between buying insurance or putting food on the table for your family, which would you choose?
  • I (and other disabled people) am not able to just go get an extra job and work harder to afford insurance. Or get a job that offers insurance. I’m stuck in this situation until I am eligible for Medicare, or until I am making lots of money from blogging and can afford my own insurance. Unfortunately, I think the Medicare thing might come first.

I am applying for financial assistance for the hospital bills, but I don’t know if I’ll qualify, since I’m married and my husband has an income.

I realize that all of this is about to change with Obamacare kicking in (DISCLAIMER: I am neither for, nor against Obamacare at this point. I am glad that we will have a system, however imperfect at the moment, that will give everyone a chance at insurance.), but in the meantime, I was unfortunate enough to take a big fall a couple of months before insurance would be made available to ‘people like me’. (ANOTHER DISCLAIMER: I do not feel ‘entitled’ to, nor would I receive, insurance at a free cost. Only a reasonable one. Where I wouldn’t have to choose between food and medical care.)

My arm is feeling better now. The hospital didn’t give me a brace or a bandage, but I’ve fallen so much that I have my own. It still hurts, but I can move my arm and type. My thigh, oddly enough, is actually feeling worse. The bruise is almost gone, but I feel a lot of stabbing pains in the places I can feel, and it’s still swollen in the joint area. However, I will not be going to the doctor for it.

I feel that there should be consideration for those of us who are disabled. We don’t choose to have a disability. We do not choose not to work. We don’t choose the extra health problems or the risks involved. These are the cards we are given, and we do our best to make the most of what we’re given, and shine through it. I am not looking for pity, I’m only saying that we shouldn’t be left stranded with no insurance, no way to get it, and a choice between risking our wellbeing and getting stuck with enormous hospital bills. The hospital might be getting $10 a month from me for a very long time.

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Adversity Breeds Awesomeness

*Let it be known that in what you are about to read, my intent is not to gossip. It is only to spread awareness of a horrible prejudice, and share one of the most – if not the most – important lessons I’ve ever learned.

“Yesterday I deactivated my Facebook account. Then I thought about all my long distance family and friends, that I only get to see and talk to through Facebook. Which is why I opened a Facebook account in the first place. It’s also been a place to promote causes that are important to me. So I’m reactivating it.

I realize that not everyone is going to agree with everything I say or do. You might be bothered by the fact that my husband was born in Mexico, the fact that I don’t work because of my disability, or the fact that sometimes my husband and I make the wrong decisions; financially or otherwise. And that’s ok. We do our best to live our lives the way we believe God calls us to, even when others disagree. And sometimes we make mistakes.

However, if we do disagree on anything, I expect we can do it in an adult-like fashion, without name calling, public humiliation, or airing dirty laundry…”

The post went on to say that if you can’t disagree without public humiliation, I will simply block you. Many don’t need to hear that, but surprisingly, a lot do.

Near the end of last week, I shared a photo on Facebook. A photo of a lady holding a sign that described her situation. She is a 34 year old woman, with a job that does not offer insurance benefits. After a trip to the ER, tumors were found in her uterus. Of course, trying to get insurance after that, she was denied based on her pre-existing condition.

The photo brought up the very controversial topic of Obamacare.

Along with the photo, I commented basically that I was neither for nor against Obamacare; Republican nor Democrat. Well, actually I said that I was a little of both. What I did specify was that we need healthcare reform. Because I don’t believe that any hardworking person should have to go without health insurance. I believe that companies like McDonald’s, or Olive Garden, who make millions every year, because of their employees, should offer health insurance to those employees. And I believe that those who cannot get health insurance through a company should be able to purchase an affordable individual plan.

Nothing to do with ‘welfare’; or even Obamacare, really. Everything to do with providers in the medical field exploiting our basic human need for health care. Employers caring more about profit than people. And I don’t see any health insurance companies or medical providers going bankrupt. Not in the real sense of the term.

The sign the lady was holding did start out saying “I am Obamacare”. But like I mentioned, I stated that I was not advocating Obamacare, but some kind of healthcare reform.

My point was not even that ‘people like me’ (Read: people who don’t work and get government assistance) should get health care. It was that people who work hard for their companies every day, should.

But somehow, based on the photo I shared and the words that I said, a family member verbally attacked me. On Facebook, for everyone to see.

The short of it was that she also has pain, but she still goes to work every day, and that I am robbing her by not doing so myself. She went on to refer to me as ungrateful, entitled, uneducated, unintelligent, and irrational, while she listed some of the financial mistakes my husband and I have made in the past.

I retaliated, not by defending my mistakes, or even by telling the other side of that story, but by referring to her as ‘lady’, and listing off all of the reasons why I am, in fact, ‘entitled’ to receive a disability check every month.

And my cousin said some political/social justice things, and my sister said some things that, honestly, made me really proud to be her sister.

My intent was not (and never is) that she, or anyone, would pity me, only that they would not assume that I simply don’t try hard enough.

But then I apologized, because I heard a still, small voice. It said “As much as depends on you, live peaceably.”

I’ve probably only really recognized that scripture twice in my life. Yet there it was, clear as day. I would have to Google it to even tell you what verse it is.

I had not answered by name calling, listing her mistakes, or even mentioning the other side of the story in those financial mistakes. But I had not answered peaceably. So I apologized. She never responded, so I may never know if she read my apology.

The reason I deactivated my account was not because of her. It was because of various family members over time taking similar actions, resorting to Facebook bullying and airing dirty laundry when they disagree with something I say or do. All of them but one over the age of 45.

I’ve been accused of faking and/or over exaggerating my disability (I’ve had multiple surgeries and therapy, starting at the age of 2, so I don’t know how you fake that). They say that I receive ‘special treatment’ from my parents and grandparents because I ‘limp a little’.

This really hurts, specifically coming from family members, and specifically within the past few years, because I have always been independent to a fault.

Regarding working, and then collecting disability, I can honestly say that I worked as hard as I could for as long as I could. I ignored the pain for a long, long time. Then I took OTC meds, then prescriptions, then got a wheelchair, braces, and accommodations. I did everything in my power to keep working. But there came a time when I couldn’t do it anymore, and I felt a peace about leaving, and collecting from a system that I had paid into as long as I could. (Note: I have no qualms about someone not working and getting government assistance if they are unable, whether or not they have paid into it. If you need it, you need it.)

With the help of a very good friend (another shout out to Mrs. C!), and the support of a few others, I realized that trying to communicate this to any of them, or anyone else, doesn’t matter. Because I do not have to defend myself. I have One much greater than any of us to defend me. My only job is to seek first the kingdom of God.

I’ve realized something else in these past few days, with all of this drama. I think a lot of you will find it interesting, maybe eye-opening to your own circumstances. Maybe you will think less of me, because I’m going to be very honest and transparent about some of my own faults. But I hope not. I hope you will just see me as a fellow human being, who has flaws and hurdles to overcome, just like the rest of us.

When I was a kid, I had all these plans about what my life was going to be after I turned 18. I didn’t like that my parents were poor, and had to worry all the time, so I was going to do all the right things to have ‘enough’ money. I didn’t like that their house was always messy, so mine was going to be clean. I thought it was sad how they fought with family members and stopped talking to them, so I wasn’t going to do that. I didn’t understand why a lot of disabled people didn’t have the life that they wanted, so I was going to have it. I was going to be nice, work hard, and make smart decisions.

But life happened, and I’m broke, my house is a mess, and I don’t talk to a growing number of family members (because I give up after multiple attacks on my character), and I can’t even grocery shop without assistance.

Ever since I started seriously losing my mobility and having a lot of pain, a few years ago, and realizing my life is not what I had ‘planned’ it would be, I’ve been asking God why. Full on, crying in the shower, punching my pillow, begging God to either rewind time or show me a reason.

For a long time I blamed it on some influences and problems from my teenage years. If I could have just stayed where I was instead of having to move to such and such place. If I could have done this at that time I wouldn’t have gone down such and such path. Why I listened to the negative voices. Why I hadn’t had more courage. Why I had to have CP. Not because it bothered me to be disabled, but because now the pain got in the way so much. And because of the prejudice and accusations.

Mostly I wanted to know why it felt like I had lost the past 10 years. Why as much as I tried to make the right decisions, they usually turned out to be the wrong ones. But knowing I could have done better, learned more.

I never really thought I would get an answer. I figured it was one of those things I’d have to wait to find out until I ask God when I get there. But going through this in the past few days, I heard my answer: Compassion.

If I had gotten out of my parents’ house and made all the right decisions, made more than enough money, never fought with my family; even not had the pain that I have now, I would be just like this family member who seemed to think that if you do not make enough make enough money to support yourself and your own family, regardless of the reason, you deserved only what your own finances could produce. Even if it meant not enough food or healthcare. Even if that was nothing.

I don’t think I would be as mean as her, but I would think like her. I would look down on my parents, and anyone who didn’t make ‘enough’ money. I would look down on people that didn’t have the career and the life that they wanted. I would even look down on disabled people that didn’t work. And even the ones that could walk, but used a wheelchair. Because if I can, they can too. To me it would be simply a matter of will power. I would assume that, regardless of what their circumstances are or have been, they should have done better. Because I would have no idea.

So I am really glad for all of my adversity. I do plan on turning our financial future around. But I will use my mind and my heart instead of my body. And I won’t look down on anyone who is in a different place. Or tax bracket.

It’s kind of embarrassing to admit all of that, so hopefully it doesn’t cause you to have a negative opinion of me.

But through all of this I learned: Adversity Breeds Awesomeness

And Compassion.

And I figured that was a lesson worth sharing.

**My cousin coined this phrase. We use it often, and we claim rights. 😉 We’ll probably make T-shirts.

***Oh, and please no mean-spirited comments. The post I applied to my Facebook page also applies to this blog.