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At Home Careers with Lupus [Everything You Need To Know]

Originally Posted on The Lupus Health Shop Blog and shared during TYHT in September, this article provides invaluable tips on working for home with any kind of chronic illness.

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At Home Careers With Lupus And Your Rights [Everything You Need To Know]

I’m going to tell you the laws in the USA that support your rights within a work place and how to use them to your advantage. Plus, there are some great insights on what positions have accommodations that you may have never thought of.

How do I know all of this?

I was in the same position as you. I wasn’t sure if I could continue my job, how to ask for help, and get what I need without getting “let go”.

I was sad that my career was over before it even began.

I hated myself for having Lupus, for suffering so much in such a short amount of time.

Many times I wondered if my life would consist of struggling to work and struggling to have enough spoons to even take care of myself after work.

I hated that I had no positive impact on society and in my own life. How can I pay for this disgusting, life-altering in all the wrong ways disease?

How can I have a family one day and support it? How can I live my life sitting at home, broke, and not able to prevent symptoms because I can’t afford it?

That’s how I thought and nothing improved in my life. It actually got way worse.

I made terrible decisions. I somehow still graduated with my bachelor’s degree though.

I was still in school and I knew I’m never going to be in the healthcare field now. I’ll never be able to help people HEAL from disease, sickness, and pain. My goal was to be the physician assistant or nurse who didn’t dismiss people for their problems and write them a script that won’t work or worse, make their problems worse!

I was going to be the person who found the cause of the problems or refer them to someone who will take the time to do that too.

Don’t you want to keep pushing? Don’t you want to live a better, quality of life with Lupus?

Don’t you want to work at home with Lupus and have a career at home with Lupus?

Well, with this easy read, you’ll be prepared to advocate for your health while keeping your current position or finding a better career that fits your needs.

If you don’t want to read the details, check out #LUPUSLIFEHACKS throughout this article for sections 3-6.

The rest of the sections need to be explained because the government or workplace isn’t a black and white kind of deal.

To Continue Reading, go to the original post: At Home Careers…

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Again, My World Shrinks

I probably shouldn’t be writing this right now. I’m so full of rage I’m apoplectic. I need to get some of this off my chest. I feel like I’m one big raw nerve being used as a hacky-sack by a battalion of porcupines. I feel sorry for the one who makes me burst, because I’m taking him down with me. All over a piddly little part-time job. Failure stings like a mother fucker. Rationally I understand that the circumstances of that failure are beyond my control, but truly, it doesn’t hurt any less. Going in, I knew there was a good chance it wouldn’t work, but still I can’t help but grieve the loss.

I had to quit driving with Uber. What precipitated this decision is the level of brain fog and cognitive impairment I deal with was quite literally putting lives at risk. After multiple very near misses (and being reported for one of my safety issues), I had to finally admit that I should probably quit before I ended up wrapped around a tree. This was on top of whittling away at my schedule until I was only working 4-6 hours a week because the physical and emotional stress was causing too much strain on my health with increased fatigue, new infections and other symptoms. It simply isn’t worth the risk to my health and the public safety.

Part of me is proud for admitting this and hanging up my keys on my own before anything bad happened. I watched my mother deteriorate the same way. She had to be forced to retire from her job, and did things like drive long after she should have while everyone who loved her looked on in horror. I don’t want to be that person.

I was hit with these cognitive problems 30 years younger than my mother was and I’m pacing the confines of my mind like a caged tiger. I wasn’t ready for this 10 years ago and I’m not ready for it now. Queue the renewed grief, the rage, the stages I have already come through and must revisit again after having had a taste of freedom.

Because I can no longer hold my job, the size of my world has shrunk back to 950 square feet. I’m not just losing the weekly interaction with my riders, a renewed sense of purpose, the feeling that I’m contributing to the betterment of my family and paying down my massive medical debt and working toward future goals. I’m losing my car and means of going out into the world at will because we’ll have to sell it. I’m losing a lot of confidence in my abilities and gaining the realization that even the most simple jobs are beyond my abilities. I can’t be trusted, not even by myself and that hurts A LOT.

If I’m being completely honest, I’m also relieved. I was stressed and worried all the time over what I was doing to my health, over the strong possibility of causing an accident and/or getting kicked off of the Uber platform for my many mistakes, over not being able to see well enough in the dark to work nights and over how it might eventually effect my social security. By finally admitting that I was in over my head and slowly drowning, I’m able to go back to concentrating solely on what I should be concentrating on; achieving the best health possible so I can live as comfortable and full a life as possible for as long as I have it. It’s a catch .22; I can’t enjoy relatively stable health when I’m doing too much and exposing myself to constant stress, even if that creates other stressors for me in the long run, even if it sometimes feels like hardly living.

The fact of the matter is I still have a lot of hurdles to address and caring for myself takes every ounce of energy I have. I have to cook all of my food from scratch. I have near weekly medical appointments, daily therapies, exercise and self-care I cannot do without and even things like keeping my pills stocked and organized accounts for hours each week. My cognitive deficits and shaking hands make me painfully slow at everything. I feel like a tortoise in a hare’s world and most of those things were either getting half-assed or completely ignored in exchange for a lousy $100-150 a week.

As I write this, I can feel all the anger starting to release. I can feel the logic and forgiveness taking over as the big picture comes into focus. I think of the money side of things and fear fills my sails, but no amount of money is worth dying for. I think back to where I was before I began working, when I took the time to create everything from scratch and I wasn’t in constant pain with bowel cramping, bloating and diarrhea.  When I had decent energy levels and didn’t suffer constant subluxations or torn tendons and ligaments because I managed every move like a miser and actually took the time to stick to a dedicated exercise routine that strengthened and energized me. These are the things I need to focus on and look forward to achieving again while trying to put this experience behind me.

My attempt at working part-time may have failed, but that doesn’t mean I’m a failure. If that were true, I would be accepting that I am nothing more than my diagnoses. Yes, I am a zebra with the trifecta of comorbid conditions, but that’s not all I am. I am a writer, a poet, an artist, a wife, a friend, an activist, a dreamer, a former teacher. I am a person with value, whether or not you see it or assign a monetary value to it.

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Returning to Work: Finding the Right Fit

triage-cancer-blog-return-to-workWhen deciding to return to work be it full or part time, one of the greatest challenges for a person with autoimmune / connective tissue disorders is to find a job that will fit our rock n’ roll lifestyles. I say this tongue in cheek, but also as a metaphor, as it doesn’t seem to matter how healthy we are–if we overdo it, we’re probably going to wake up the next morning feeling like we spent the night trying to outpace Ozzy Osborne circa 1980. And let’s face it, much of the healthy world understands and sympathizes with the behaviors that result from our health just about as well as they do Ozzy’s drinking and drugging.

We are rock n’ roll because our bodies are unpredictable, therefore so are we. Most of the world won’t bother to even try to understand why we do what we do and frankly it’s why employers who expect us to punch a time clock hate us. We might come in late because despite going to bed at 10pm like good little boys and girls our pain levels or insomnia wouldn’t let us actually sleep until 4am. Or we subluxated a shoulder getting dressed. We miss time because of migraines or injury or catching the latest bug, medical appointments and other things completely out of our control just like everyone else, just a lot more frequently. In the grand scheme of things, the reasons behind those behaviors matter not. In the end, we are seen as rock ‘n roll; too cool to hold a day job.

More than likely, we’ve all been there at least once before. Terminated because our FMLA ran out, or we missed too much time, or got fired for a fill-in-the-blank excuse used to get us out the door before we cost the company another dime in insurance costs and time lost. It’s demeaning and has taken nearly as long to recover from as it took to get diagnosed…..well, alright, maybe not THAT LONG, but we don’t particularly want to travel that road again anytime soon. So what do we do?

In today’s job market, there are a surprising number of ways to make a living that don’t require you to punch a time clock and have nothing to do with MLM or pyramid schemes, regardless of ability or education level. It’s also becoming more and more possible to make a living working from home, though these positions usually require specific time commitments and hours, so you want to consider how much flexibility you will need before deciding where to apply.

However, it does take away the added burden on energy stores of having to wash, dress and prepare for work, drive there and back (or deal with public transportation) and the often long haul to and from the parking lot, lunches, bathrooms and so forth. It may not sound like much to a healthy person with boundless energy stores, but for a person with chronic illness and fatigue, even if you have a “cushy” desk job, those activities can be the difference between having the energy to fix dinner or get in those few minutes of precious cardio and physical therapy everyday that keep us from completely falling apart,

First, it’s important to decide what kind of job will best suit your needs and goals. Begin by making a list of what your ideal job would look like. I will share mine below:

Job Goals and Needs

  • Bring in $400-600 month
  • A job with social interaction
  • A job with writing
  • Will help me build confidence
  • Will help me get used to being in public again
  • something where I control my hours, so I can keep from getting run down, but build up as I get stronger
  • flexibility to come and go as needed or work from home
  • 10-15 hours to start
  • Low activity levels (sitting)
  • Ability to move around and take breaks as needed
  • Take time off as needed

Remember, this is a list of needs, not wants. It needs to be grounded in practicality. If I had my way, I’d take a full time job teaching or writing. Those are the things I love to do most in the world and like most people, I thoroughly enjoy being productive, developing in a career and contributing significantly to my family’s well-being. But the reality is that I’m not ready for the rigors of a full-time job, especially not one as rigorous and demanding as teaching. Instead, I’ll settle for contributing to the high costs of my own healthcare and paying down some of the debt we’ve accumulated when my SSDI and my husband’s paychecks haven’t quite covered monthly expenses while having the satisfaction of knowing I’ve done everything I can to contribute. I’m also really looking forward to getting out there and expanding my world beyond these four walls, be it literal or figurative.

Still, I need a job where the boss isn’t going to freak out every time I have a migraine and can’t get it under control or go into a flare. I need to be able to go to my medical appointments without having to negotiate with other people’s schedules. It’s hard enough to get in to see some of my specialists. I need to be able to read my symptoms and say “work just isn’t going to happen today” and know that I still have the power to prioritize my health over the needs of the business, which really isn’t going to suffer nearly as much as I am if I push myself past that magical threshold that’s the difference between being able to recover in a day versus a week.

Of course, all of these ideas and decisions are something you need to decide for yourself. If you don’t have dysautonomia such as POTS or NMH, then maybe you don’t have to worry about exercise intolerance and working a regular schedule won’t be a problem for you. Maybe you’re simply at a higher level of functioning and you know you can work about 30 hours a week with no problem. Set those parameters and do your best to stick to them. More than likely, as you’re going about the process of job hunting and interviewing, you’re going to figure out if you can really handle the number of hours you’ve chosen. (Remember, you have to leave room for the rest of your life, unless you can actually afford to hire people to do some of that for you). Once you start entertaining job offers, if the job is nearly perfect except for a couple of minor points, see if you can negotiate the remaining points as part of special accommodation due to disability. Pursue what you want and do your best to make it happen. That’s what the ticket to work program and trial work period are all about.

If you’re in a similar boat to me and are only interested in doing something part-time or even full-time with  total control and flexibility, you might want to consider doing something where you are your own boss, or even starting your own business. There are plenty of low investment options out there, such as driving for Uber or Lyft, providing a service such as cleaning, dog walking or running errands. You can drive for Uber or Lyft and have complete control over your hours, but you may also be able to find other operations that specialize in providing transportation to the elderly, young and disabled in your city, as well.

If you’re interested in working for yourself, consider monetizing your hobby or special skill. There’s a lot of money to be made through merchant sites like etsy or setting up a storefront on Amazon. If you’re a blogger, monetization is an option and one I’m currently exploring. Of course businesses take time to build and usually require some initial investment, so working for someone else in the meantime could help you accomplish this goal.

There are also things like task rabbit and  where you can perform small tasks for companies and individuals for a prearranged price, though if you read reviews of these services many people complain about being fairly compensated, so be forewarned.

Working from home is very possible if you have good customer service skills or a college degree. You can do call center work (everything from appointment setting to technical support), tutor students, teach online classes, write content for websites, blogs, newspapers and more. You just need to know where to look, which will be the topic of my next employment related blog.

If you’re disabled and want to work, there are plenty of options these days, even if you’re on SSI or SSDI. Of course you want to work with a WIPA to ensure you’re doing the best thing for your situation (see my article on the subject here), but if you’re healthy enough to find yourself regularly suffering boredom, it’s probably time to start turning some of your time into revenue! Even if you don’t make the world’s most reliable employee that doesn’t mean you don’t have value. It simply means you need a non-traditional approach to earning. In today’s job market, it’s quite possible to put some money in your pocket and protect your health.