Package excitement: oh how things have changed

March 30, 2016

There was a time when getting a package in the mail was an exciting thing. It still is. But in2016-03-30 12.35.09 a very different way.

As a kid, a package was a birthday gift from a far away relative. In college it was brownies and cookies from my aunt. As Amazon and other online retailers came on the scene not long after I left college, a package meant a book, an electronic gadget, or some other purchase I made for myself. I’m a bit embarrassed by how I wasted my money, but some of these purchases were really useful. Regardless, when I saw a box with my name on it, it was exciting!

I was thinking about this earlier this week when I opened a box and felt a different kind of excitement. It’s here! Finally! This box didn’t contain a book, an electronic gizmo, or new shoes. It wasn’t fun or exotic. It was….

New medical supplies!

An ASV is like a CPAP machine – it helps me breath while I sleep. )It’s used for an unusual form of sleep apnea called central complex sleep apnea.) Every few months insurance will cover a new set of supplies – a new tube and new mask. Right before I become eligible for replacements, I can feel the current ones losing effectiveness. So I was super excited for my new supplies. It meant breathing at night would be even better, and when I breath better at night, everything in my body feels better the next day!

Part of this change, of course, has to do with money, or lack thereof. I’m simply not buying stuff online as much. Part of it is age. Relatives don’t send gifts anymore. If they want to give a gift, they give a check. Don’t get me wrong, I love and appreciate checks. But they aren’t fun like gifts are. They aren’t surprising. (Then again, I also don’t get stuck with things I don’t like.) But part of it is my health. My healthy friends don’t get medical supplies in the mail. And most people who get medical supplies probably aren’t excited by them. But I’m excited by anything that makes me feel better.

And if that small improvement in health comes in a box in the mail, then you can be damn sure I’m going to be super excited!

What about you? Can you relate? How do you feel about getting new medical supplies? Please share in the comments!

2 Comments | Expectations, Medication, Raves, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.

11 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

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!

4 Comments | Educating, Frustration, Medication, Pain, Politics, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

“Affording” a home

March 15, 2016

I think it’s time to move.

I have been in my current apartment for 10 years. The longest I ever spent in one place before this was a year and a half. I didn’t mean to stay here so long, but inertia set in, and years passed, and here I am.

Every 2-3 years I look for a new apartment. I get discouraged when I can’t find anything nicer than what I’ve got for the same price, even in a less popular neighborhood. And I like my neighbors. So I stay. And then the next year I consider moving again. It’s a tiresome cycle.

But this year may just be the year. I’m tired of this. I want a change. And my recent dog experience made me realize that if I’m going to move, I should do it now, before I get a dog, because it would just be too hard to move with a new pup in my life.

In the past, I always set my housing budget based on my income and the others things I spent money on. When I moved to my current place, it was more expensive than where I was moving from, but I decided it was worth giving up some of the extras in my budget so I could afford it.

Now it’s different. My social security disability and other benefits cover my non-rent expenses and I have a few hundred dollars left over to put towards rent. But a few hundred won’t do it around here. Until now I’ve been taking the rest of the rent from my savings, but that won’t work forever.

I won’t get a roommate. Not only would I hate having a roommate, but I couldn’t share the kitchen with someone unless they also had Celiac Disease. So let’s assume no roommate. What are my options?

I can stay where I am. My guess is that my rent will be going up when I renew my lease (I’ll find out in a few weeks.) Let’s say staying here would be $1600 per month, including heat but no other utilities.

I could move to a nearby town where I’d like to live, and pay around $1500, including heat.

I could move to a town a bit further out and pay $1400, including heat.

I could move an hour away and pay only $1100, but have no friends or social life nearby.

I could put all my savings into buying a condo, with a mortgage lower than my rent. But then, when I add in condo fees, property taxes, and repairs, I’d be paying about the same as I pay in rent, but, I’d have put my savings into the down payment.

I could buy a single family house with a mortgage about the same as my rent. There’d be no condo fees, but I’d still be pulling money out of savings every month unless I could start earning more…. but there’s be less in savings because I’d have used it for the down payment.

I could move farther out and buy a 3-family house, live on the first floor and rent out the other two floors. My savings would go into the down payment, but the rent from those two apartments would cover my mortgage, property taxes, and house repairs.

Obviously the last option makes the most financial sense, but it has some problems. I’d have to move at least 45 minutes away, maybe more. That means I wouldn’t see my friends as much or socialize as much. I know nothing about owning a house. I’ve always rented. And I can’t fix anything, or event attempt to learn, because of my health problems, so I’d have to hire someone to fix every little problem. I’d have to deal with tenants. But on the bright side, if the rent from the tenants covered my costs, I could basically live there for free. Then my social security would cover the rest of my expenses (medical bills, car, etc.) and I wouldn’t have to worry about doing any other work.

I would probably buy a 3-family house if I could do it near where I am now, but it’s simply not feasible here (it would be at least $600k.)

So that brings me back to renting as the simplest, most straightforward option. But I can’t afford to rent indefinitely unless I start earning a living.

Blech. I keep running around in this circle in my mind. I look at apartments and condos and houses online and I run the numbers over and over again. I’ve done the research on how to calculate for vacancies when renting out. I’m good with numbers. But no matter what I do, the numbers just don’t add up.

The answer is obvious, really: move away. But my life is here. My friends, my social life, my chronic pain support group, my doctors….everyone is here. I can’t imagine starting over.

I’m lucky that I have options. I know that. I am incredibly lucky. I’m thankful that I saved up some money back when I was working. I’m lucky that my family has helped me out from time to time. But that luck isn’t enough to support my current lifestyle. So I’m just not sure what to do.

And in case any of you regular readers are wondering about Section 8, I’ve been keeping an eye out for places that would work with that, too, but I’m not seeing anything. And considering how inept they’ve been about processing my paperwork, I’m not exactly holding my breath that it will come through anyway. So, it’s in the back of my mind as a potential option, but I don’t think it will solve this conundrum for me….

4 Comments | Decisions, Frustration, Isolation, Limitations, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

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