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.

30 Things About My Invisible Illness You May Not Know

During September, Invisible Illness week came and went. I had other things on my mind in September, so I’m talking about it now. While cerebral palsy is a disability and not really an illness, I still feel that it fits the bill in my case.

If you’re wondering how it’s invisible, the reasons are these:

  • I don’t ‘look’ disabled. I really don’t like this one, because I feel like nobody should be labeled that they ‘look disabled’ or ‘don’t look disabled’. But out in the world, people like labels.
  • When I’m walking around in public, or even in my wheelchair, nobody knows that I’m in a lot of pain. I look happy (because I am happy, based on things that have nothing to do with my physical circumstances). I think that, at least for me, walking (or rolling; mostly rolling) around with a sad face, or being angry all the time, would be detrimental to my life and to the people around me. Especially my kids.
  • Still a lot of my friends and family, even doctors, have a hard time understanding it. I’ve been a lot more open about the pain lately, and losing my mobility, but sometimes I still get the feeling that a lot of people don’t understand it’s more than just a limp.

Anyway, I found this survey on another blog, and reading her answers was interesting, so I thought I would post it too 🙂 Surveys are a fun way to learn things about other people, and even yourself, while your searching your insides for the answer to a question you had never thought to ask yourself. Here goes!

1. The illness I live with is: Cerebral Palsy

2. I was diagnosed with it in the year: 1987 I think? Maybe ’86. I was a year and a half or two.

3. But I had symptoms since: I was born I guess, just nobody really recognized them for a while. CP symptoms are similar to regular newborn/baby characteristics.

4. The biggest adjustment I’ve had to make is: Not being able to do whatever I want, whenever I want. Having an A-type personality and losing your mobility is hard!

5. Most people assume: Oh… where do I start with this question… Most people assume that I’m fine. That limping is my biggest problem.

6. The hardest part about mornings are: Everything. The pain is worst in the morning. It wakes me up before the sun. Which is good anyway, because I need a good couple hours to get it under control before the kids wake up.

7. My favorite medical TV show is: TV is boring. Turn up the radio. Or X Factor. X Factor is good.

8. A gadget I couldn’t live without is: My iPhone. Same answer as the last girl. But it’s oh. So. True.

9. The hardest part about nights are: Falling asleep when my legs are aching. Also, same answer as the last girl, who has Spina Bifida. I would add that staying asleep while things are aching is also a big challenge.

10. Each day I take at least 7 pills & vitamins. Lately it’s in the 20’s (Don’t judge me, a lot of ibuprofen for swelling and inflammation. And it’s OTC because I don’t wanna pay $100 plus to get and buy a prescription)

11. Regarding alternative treatments I: Have tried them all.. To help with pain and overall health and wellbeing. Again, same answer as the last girl. I would add that nothing seems to really help.

12. If I had to choose between an invisible illness or visible I would choose: 10 years ago I wouldn’t have changed it. Now I would. Well, maybe not, because I would have to choose a visible one, which has it’s advantages, but I don’t know if its a good trade off.

13. Regarding working and career: I miss working, and making more money than I recieve on Social Security, but I’m not going to let it bother me because I can’t change it. And some of the things I get to do now are pretty awesome.

14. People would be surprised to know: I feel like I fell/am falling through the cracks, medically speaking. I didn’t have any medical care from the time I was 13 until I got my first job with insurance at 23. And now, they don’t know what to do with me. I keep hearing about other people that are having surgeries that are working wonders for them, and I think a few of them could really help me, but I don’t have insurance right now 😦

15. The hardest thing to accept about reality has been: Losing my mobility, resulting in not being able to raise my kids or live my life the way I really want to. I don’t know that I’ve really even accepted it. I have for right now, but I still have hopes that it can be better.

16. Something I never thought I could do with my illness that I did was: Wear flip-flops. Stupid I know, but if you only knew…
Thank you, Old Navy, for making cheap flip flops that stick to my feet so I can wear them.

17. The commercials about my illness: Are always about suing doctors for medical malpractice.

18. Something I really miss doing since my disability has progressed is: walking, running, exercising, not being in pain… it’s a long list.

19. It is really hard to go without: prescription drugs! Same answer as the last girl. But seriously I couldn’t get out of bed without them. Or stay in bed, so that’s a problem. But most of all I wouldn’t be able to take care of my kids.

21. If I could have one day of feeling normal again I would: Go on a hike with my family. Climb a mountain or something. Fit in as much as I possibly could.

22. My illness has taught me: You can never truly know, or judge, what another person is going through.

23. Want to know a secret? One thing people say that gets under my skin is: You’re faking it. You don’t really need that wheelchair. You’re in a handicap spot. You could work if you really wanted to. Basically any kind of doubt that I have the trouble that I have. I think that stems from having some actual family members and friends say things like that.

24. But I love it when people: Recognize that despite my disability, I’m just another person, mom, etc. When they make the effort to get to know the person in front of the disability (I don’t think I’m behind it, it’s behind me), instead of being prejudice.

25. My favorite motto, scripture, quote that gets me through tough times is: “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy” James 1:2, and “Pray about everything; worry about nothing. Tell God what you need, and thank Him for all He has done.” Philippians 4:6

26. When someone is diagnosed I’d like to tell them: Don’t let anyone tell you what you can or can’t do.

27. Something that has surprised me about living with an illness is: Getting worse. I was always told it wouldn’t get worse. What they meant was that the brain damage wouldn’t progress.

28. The nicest thing someone did for me when I wasn’t feeling well was: A lot of things. Carry me, raise money for a wheelchair so I wouldn’t have to keep walking, accomodations and days off at work…

29. I’m going to get involved with Invisible Illness Week next year because: People need to be aware of what other people around them might be going through, and that they shouldn’t be quick to judge.

30. The fact that you read this list makes me feel: Funny way to end, but I’m glad you took the time to get to know me a little better 😉