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!

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I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.


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.


Wishing my doctors were connected

May 13, 2017

My podiatrist said she might want to get an MRI of my left foot if the cyst grows any bigger. I mentioned I was having an MRI of my left knee the next day. Too bad my podiatrist’s private practice is associated with Mt. Auburn hospital and my MRI was ordered by a doctor at Brigham & Women’s hospital.

Brigham is part of the Partners Healthcare network and Mt. Auburn is considering joining, but it hasn’t happened yet. When I happened to say that, my doctor was shocked, and asked how I knew about that. I didn’t know what to say. I’m a patient with chronic illness, with doctors spread throughout multiple hospital networks. Of course I watch for these kinds of things in the news! It affects my life too much to not pay attention.

Then I got that MRI of my knee, and it’s not great. I’ll know more after I see the specialist on Tuesday, but it looks like my knee cartilage is being worn away by wear and tear. This is never good, but it’s especially not good for someone in her 30s who needs her knees to last another 50-60 years!

Now who should I tell about the MRI? So far I figure I should tell my primary care physician, my podiatrist, my naturopath, and my physical therapist. Maybe I’ll come up with more later, but for now, those 4 should know. Too bad NONE of them are in the same network as each other or as the doctor who ordered the MRI.

I have written about this before and I know that I will again. Because it sucks, and because it impacts my health in a very real and very negative way. The one consolation is that at least I have the option of emailing information. It doesn’t have to be done by phone and fax. So I copied the text of the MRI report and pasted into an email to my PCP. It’s not perfect, but for now, it’s good enough. I will have to continue to do that throughout this process, I’m sure.

I just hope nothing falls through the cracks. Because it is up to me to keep up with the paperwork. My doctors won’t communicate with each other, and if something falls through the cracks (again) it could be very bad for my health. It shouldn’t be up to the patient, but it is.

This is just one more example of why, in my experience, only healthy people say our system isn’t broken.


Another day, another medical appointment

May 3, 2017

A neighbor said hi as I walked out my door.

“Where are you off to?”

“I have a medical appointment.”

And as I said it, I remembered that when I saw her yesterday, I had mentioned that I was just getting home from a medical appointment. It’s not strange to me that I have appointments two days in a row, but it probably seems strange to others. If they only knew.

My parents asked me to watch their dog for a couple days while they’re on vacation. If you’ve been reading this blog for any length of time, you know how I feel about dogs. So obviously I’m thrilled to do it! First I had to check my schedule (as if I ever go anywhere.) Let’s see what I have during that time…. endocrinologist, rheumatologist, primary care physician, physical therapist. That’s it.

It’s a couple weeks away, so hopefully I’ll make plans with friends, too. But still, 4 appointments! I have friends who only see a doctor once a year for a checkup. I wonder what that’s like? I guess I’ll never know.


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