How bureaucracy continues to screw with me for being disabled

May 31, 2017

Remember this post from a year and a half ago when I was told I was nearing the top of the waiting list for Section 8? Well, a year and a half later I found out they were just screwing with me.

The other day I was thinking about what I would do if I suddenly got Section 8. At this point, it would make a huge difference. I could stop trying to work, and stop feeling overwhelmed all the time. I could actually cover almost all of my expenses. I could focus more on my health. Good things, right?

The last time I asked about my Section 8 status I was given vague non-answers. A year and a half ago they said I was near the top of the list and I spent hours filling out paperwork, some of which they lost, and I had to redo. A few months later they had me do more paperwork with my financials for the latest year. And then I heard nothing.

I checked in a few times, but they didn’t tell me anything.

After thinking about how helpful it would be, I decided to try again. I recently moved, so I called the housing office in my new town. I learned a few important things:

  1. When I signed up the waiting list was 4-5 years long. Now they’re saying it’s 10 years long.
  2. Because I moved, I’m no longer going to get a voucher from my old town. I mean, it’s allowed, but it won’t happen. Every town gives priority to people who live and work in that town. So my new town will give me priority over others, but of course, a lot of people are ahead of me on that list.
  3. I have another 2-3 years to go. Maybe more.

The woman I spoke to was confused as to why I was brought in to fill out paperwork. She said I was far too low on the list for that. And that was yesterday. I was obviously much lower on the list a year and a half ago!

This means a few things to me:

  1. Filling out that paperwork was a waste of my time.
  2. Filling out that paperwork was a waste of the housing office staff’s time and therefore money. Certain politicians say that people like me are wasting taxpayer money. Nope, not me. Believe me, I’d have rather not done all that work for nothing! The office wasted the money.
  3. I have no chance of getting Section 8 any time soon so I have to continue to try and earn money myself.

This sucks. A lot. At a friend’s urging, I will contact my state rep, and maybe my U.S. rep, to see if they can find out what’s going on. The thing is, they might find out, but I doubt it will help me.

I was jerked around. I was given false hope. And there is no discernible reason for this other than incompetence.

I am so sick and tired of poor and/or disabled people being screwed with and disrespected. This has to STOP!


One thing we can do to save healthcare

May 19, 2017

I’m keeping this short, because today is a recovery day. It’s a recovery day for many reasons, and one of those is because I spent a lot of energy talking to a senator’s aide yesterday about the state of healthcare in our country and where it’s headed.

Obviously, this is a hard topic to discuss. It’s complicated and scary and very personal. He said a lot of things that I found unhelpful and uninteresting. But then he said some other things that could make a difference. One of those is this: senators’ staffs track all phone calls. Even from out-of-staters.

Some record them and list them all out. Others don’t. But even the ones who don’t know how many calls they’re getting and which way people are leaning.

This aide said they’re getting thousands of calls about healthcare, and not all from people in our state. Hmm.

So we should all call. State our case. We don’t have to say where we’re from up front. Say it at the end, so they listen to our content before they judge. It can be as simple as, “Hi, my name is ____ and I’m calling to ask you to vote against the AHCA. The Affordable Care Act allows me to keep my insurance (or whatever other benefit it provides to you) which keeps me alive (or any other benefit you receive.) Please vote to keep and improve the ACA. Do not repeal or replace it. I am from _____. Thank you.”

Or instead of talking about your personal experience, you can simply say that it will cost millions of people their healthcare, and that you don’t believe that is in the best interests of our country.

Easy. Simple. Fast.

Not sure who to call? There are 100 senators – 2 from every state. Start with the 2 in your state. Even if they are voting the way you want them to, they could use your support! You never know when a flood of calls from the other side might alter things, so please call and voice your support. Then work your way through the list. If you have friends or family in a state where the senator is on the fence or voting the other way, ask them to call, too.

You can find contact information for all of the senators here: https://www.senate.gov/senators/contact/

Here are some senators in particular to call and encourage to vote against the AHCA.

The loss of healthcare is a difficult, scary, horrifying prospect. Let’s do all we can to make sure it doesn’t happen. Please take a moment to share this. You never know whose phone call might be the one to tip the scales.


The government is voting to kill us

March 15, 2017

On the one hand I don’t want this blog to get too political. On the other hand, how can I not discuss politics when the government is talking about taking healthcare away from millions of people!?

There is a lot I want to say, and I can’t say it all at this moment, but rest assured I will be back to discuss it another day!

For today I want to talk about this feeling that the government is trying to kill us, and how healthy, working people respond to that.

You see, I have said many times that the government is trying to kill us. If you don’t know what I’m talking about, look at that link above. Many healthy friends with jobs think it’s an exaggeration. Most of them will have health insurance through their employers. It might cost more, but they can make up the difference if they cut back in other areas. They hate it, but it won’t kill them.

And if they did lose their insurance, it would suck, but they could cough up the money for the occasional doctor visit or antibiotic. They would hate it, but it wouldn’t kill them.

Then there are people like me. I’m not nearly as well off as they are, but not as badly off as many of my other friends. Because most of my health conditions are pretty stable. If I miss a medication for a few months my health would decline, but I wouldn’t die immediately. I have savings and supportive parents who can afford to help me to a certain extent. We could find a way to cover my more basic health costs for many years. And maybe I would skip seeing the doctors who didn’t feel entirely necessary (though really, I try not to see doctors unless it’s necessary!) And hopefully, eventually, a new political party in office would fix things. We could cover the gap. Besides, I am likely to have some insurance coverage, even though it would be greatly reduced.

But then there are other friends of mine, not to mention the many strangers I have never met. These are people who do not have safety nets. They are more likely to lose their insurance altogether and they do not have the money to cover the costs. For these people, there will be no way to see a doctor or take a prescription. Even worse, many of them have illnesses that will quickly kill them.

These are limited examples, of course. I’m not getting into the many thousands who will become bankrupt and the many other thousands who will have to quit their jobs due to poor health.

These are horrible circumstances. Any reasonable person is upset by this. And then we remember…. our politicians are the ones who want to do this to us. A handful of people with high salaries and kick-ass health insurance (congresspeople have the best health insurance in the country) are deciding whether people like me will be able to see the doctors we need to see.

If you’ve been reading this blog from the beginning, then you know I was working when I started it. I hated to leave my job, but there was no way I could continue to work. I spent years fighting for the benefits I had paid for and deserved. It was a miserable road and I was horribly sick. Now, finally, my health is improving! It is not perfect by any means, but it’s so much better! I’m even looking for ways to start doing a little bit of paid work. This new health insurance situation could destroy that progress. It could stop me from earning any money at all. It could dash my dreams permanently, by making my health worse in a way I might not be able to recover from.

If that sounds dramatic, good! Because it IS dramatic! We are talking about taking away the ability for people to care for their health.

Healthcare should be a right, not a privilege reserved for the rich. But that is what the republicans in this country want. They want to give more money to the rich even if it means killing the poor.

They should be ashamed of themselves. They are voting to kill us.


When the government forces pain upon us

March 17, 2016

This week there was a difficult statement from the Centers for Disease Control. Well, difficult for people with chronic pain and their doctors.

There has been a lot of discussion around the use of opioids for treating chronic pain. It paints all users are addicts. It suggests that the deaths caused from addiction negate any benefit that might be gained from proper use of the meds. It suggests that there is no such thing as proper use. And so on.

For the record, I do not use opioids. I have tried them and have always found that they helped me very little and that their side effects were terrible. If they worked for me and didn’t have bad side effects then yes, I would use them every day if that meant living with less pain.

Also for the record, many close friends take opioids daily. They are not addicts. They take their medications responsibly. These medications allow them to do heroic tasks like shower, cook, and drive to medical appointments. Occasionally they can even do something fun, like have me over for a visit.

This week the CDC issued a guideline. This is non-binding, but it does usually have an effect on doctors’ practices. I won’t get into the details here, but they’re linked at the bottom of the article below. Suffice it to say, a bunch of people who don’t have chronic pain have decided that those with chronic pain don’t need opioids. Apparently Tylenol and Advil should be sufficient. In other words, they’re completely clueless.

I find this whole thing very upsetting. So on the one hand, I think it’s incredibly important to talk about it. On the other hand, I don’t feel qualified to properly and fully discuss it, and I find it upsetting to even try.

Here are just a few of my thoughts:

  • Lumping together all opioid deaths, including those from heroin use, is hurtful, hateful, and absurd.
  • How can they not be accounting for the increased suicide rate that will result from this? Do they not care, or do they not understand?
  • Do they really think people would take medications with terrible side effects if Tylenol and Advil (which aren’t harmless, by the way!) really worked?
  • Do they have any idea how many different things pain patients try? Do they know how many more things we would try if insurance covered them? I have such a list of things I would do if I only had the money and the energy!
  • Have they not considered that maybe, just maybe, limiting the use of legal drugs will lead to an increase in the use of illegal drugs?
  • If the concern is addition, why not work to prevent and treat addiction? Studies have made it clear that this won’t help.
  • Where is the compassion?

I want to say so much, but I don’t have the words. So here are some reactions I want to share. At the bottom of that article is a link to the CDC guidelines.

The chronic pain community put up a good fight and lost this round. But the fight isn’t over. I don’t know what will happen next, but I know that no one will be giving up!


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