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Guest Post: Making It As a Spoonie Girl Boss

It’s been a while since the Zebra Pit has added to our Disability and Work series. I enlisted the help of spoonie entrepreneur, graphic designer and blogger Kirsten, who owns Graphic Organic and works as a freelance graphic designer. Kirsten was kind enough to lay out a few of the things she found instrumental to building her business and discusses a little about how she manages the needs and constraints of her chronic illness with her work. Please help offer Kirsten a warm Zebra Pit welcome. I hope you enjoy her invaluable advice as much as I!

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Are you chronically ill and looking for ways to work from home? Did you have to give up your full-time job? Are you good at a specific skill? Do you have a lot of knowledge about a certain topic? Sounds familiar? Then keep on reading…

I’ve been running my business Graphic Organic for two years now. Graphic Organic is an online store with my own designs on sustainable clothing and stationery. I’m also a freelance graphic designer and I love writing articles for my blog.

I’m not an expert whatsoever, nor am I able to fully make a living with my business. I don’t have the secret ingredient for becoming a success overnight. I started out knowing nothing about the entrepreneur life. Graphic Organic is slowly growing every single day and so am I as a girl boss. I’m here to share my story of how I started my business and things I’ve learned so far.

1. No matter how much you prepare you’re never ready, but it does help.

You will learn most things along the way. Even the most successful business person will tell you they find out new things every day. Owning a brand has its risks, no matter how good you prepare, you’ll realize soon you can’t control everything.

Nonetheless, I’m glad I did go to a business course before opening. I didn’t have many people close to me that are entrepreneurs and I had no idea where to begin.

In business class we studied the basics of marketing, insurances, laws, how to make an invoice, taxes, etc. I know some people make it seem “easy” online to start as an entrepreneur but a lot of them are technically doing things against the law. This doesn’t have to lead to serious problems now but it’s important to know your rights, especially as your company grows.

2. Invest, volunteer and support.

Kirsten spending time with a beloved companion.

In order to grow your brand you have to be very passionate, otherwise you will give up in an early stage. Believe me, there have been multiple times when I wanted to just stop because I was so tired of working for free.

Every little money you earn goes needs to be reinvested into your business. Whether that is paying your suppliers, materials you need or your accountant. Advertising and promoting your business is not only hard work but also expensive. Running a business is so much more than the service or products you offer.

I know it sometimes feels like you are constantly giving and not receiving. Money will come into your life but you have to be patient.

Doing volunteer graphic design jobs have payed me in experience and more work to put on my portfolio. Thanks to the work I did for free, a client reached out to me because they liked my style.

Giving away products made people talk about my brand and therefore I gained new traffic to the site who subscribed to the newsletter or follow me on social media, which attracted them later on to actually purchase something.

Kirsten of Graphic Organic details some of the things she found most instrumental in starting her own freelance career and walks you through a few excellent guidelines to follow when managing a business with your chronic illness to help make your girl boss dreams come true! Whether you want part-time income or a flourishing full-time + career, these tips are for you! Part of the Zebra Pit's Working with Chronic Illness Series.

Another thing I noticed is supporting fellow entrepreneurs in your niche is so important. You know about yourself how many hours of work you put into your project, a super quick and easy thing to do is simply let someone know they’re doing a great job. Think about how it makes you feel when you get a compliment. Feels good right?

Why would you go to a supermarket with four floors for jam when your neighbour makes it themselves in a local establishment? If you don’t have money to spend now, you can easily support by just telling people about it, hang up a flyer, share on social media or a simple thumbs up and a nice comment help to gain followers.

Try to look at your business as something unique, even if people try to copy it, they can never be YOU. There is a place for everyone. Don’t look at it as much as a competition but a positive look and genuine support can help you a lot further.

3. Your health stays a priority.

Last but not least, your health should always be your first priority. My chronic illness is not going on a holiday when I’m in working mode. The chronic pain and fatigue is always with me. Even though we all know it can be so nice to just focus on something else and forget about being ill, it can be toxic too if you put self care at the bottom of your to-do list.

The freelance work I did has always been for someone who understands my health issues. They know that I have a slower pace than the average graphic designer and that sometimes I’m stuck in bed and it’s possible appointments have to be rescheduled. Strict deadlines are a no go for me.

This makes it a lot harder to find clients but I think it’s important to not promise anything you cannot realize.

When I receive an order, I give myself 1-3 business days to package the product(s) and bring the parcel(s) to the post office. That way I’m not getting stressed out when I’m having a flare.

I know all too well what it’s like feeling trapped in your body and wanting to do things because you feel so inspired but you can’t. “You can’t pour from an empty cup”. I’m working hard on planning in rest, just as I plan in work and activities.

I make mistakes and I’m gonna keep making them. But I’m growing as a business woman and as an individual too. Remember that taking care of yourself is a skill just as much as making jam is. 😉

Do you have a business yourself? Are you thinking of starting one? Let me know in the comments!

Kirsten is a graphic designer, blogger and the founder of Graphic Organic. She’s 23 years old and lives with fibromyalgia and M.E. To learn more about Kirsten, visit her website:

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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.

At Home Careers With Lupus Everything You Need To Know- Featured Image - Lupus Health Shop

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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Why Working Didn't Work for This Zebra

Back to WorkI’ve been trying to put my experience with attempting to return to part-time work into some sort of perspective. I can’t exactly say I’m sorry I did it, because I learned a few valuable things about what might suit me for work in the future and what certainly doesn’t. I also enjoyed my time driving, made a little extra money and got more comfortable with leaving the house and socializing again. It’s difficult not to harbor some small amount of regret about the experience knowing that it set my health back as it did, but having finally come out on the other side, I can honestly say that I don’t think I caused myself any permanent damage. On the contrary, I seem to be right back on track, though it took me three months to get there.

It seems astounding that working 7-15 hours a week could so thoroughly wreck me that it took three months to recover. Of course any healthy person would find such a schedule to be ridiculously easy, even if they had a house full of kids and other commitments. Having EDS and being a POTSie though, I only have so much energy and most of it should be taken up by caring for myself. When I began working, much of that care got lost to the drive for dollars and before I knew it, I began convincing myself that I could get by without cooking everything from scratch and that working was a replacement for my physical therapy and exercise.

POTS, a form of dysautonomia, also makes me highly susceptible to the effects of stress. I may not have realized it, but driving for Uber was creating a massive amount of stress for me, from constantly worrying about knowing where I was going and whether or not my car was clean to safety. I was constantly worried about having an accident. I even dreamed about it and anytime I came close to having an accident, the scenario would just replay in my mind at the most inopportune times (like when I was about to fall asleep), flooding my system with adrenaline and epinephrine.06e45ed58c827932ebbfc732fa67c3e1-therapy-humor-art-therapy

The only thing I didn’t cheat while working was the amount of rest I needed, and yet my rest wasn’t very restful, because I was too stressed out to be calm or reach REM stage sleep because I was constantly stuck in fight or flight mode. I couldn’t manage my blood pressure or heart rate. I had hypotensive headaches and migraines. I was fatigued and anxious. My GI tract began shutting down, both from dysautonomia and constant FODMAP and allergen exposure.

Since I wasn’t keeping up with my fasciablasting, PT, cardio and strengthening, my progress was heading in the wrong direction fast. My joints were subluxing and dislocating with alarming frequency, requiring a much more frequent use of braces. My muscles were becoming sore and atrophied, and my fascia were reverting back to their painfully bunched state. I was no longer reaping the small energy payoff I was seeing from the bit of cardio I had managed previously, either. On top of that, sitting in one position in my car was causing my back to ache almost constantly, which was causing sciatica, traveling down my left hip and thigh.

When I finally threw in the towel, it took me six weeks of rest, strict nutrition and somatics just to get my autonomic system back to its usual state of not quite normal, but stable enough to achieve semi-regular REM stage sleep and regular function of the major organs. Only then could I begin addressing the ongoing problems I was still facing with a rigorous PT program, return to a regular schedule of cardio and strengthening and begin to put my life back together again.

Now that I’m three months out, I feel pretty good again, for me. So good I almost think I’m slightly ahead of where I was before I started driving for Uber, and that may well be the case, though it has a lot more to do with all I’ve accomplished in that time than the experience itself. I’ve gotten lucky with finding some great doctors and with some medication changes, a new physical therapist and other changes, I’m finally finding some relief and real change.

The question is whether that change will ever be enough to send me off to work again. At this point, I have to say no, at least not in the traditional sense. I’m just not built for traditional work. I’ll have to keep trying to find my perfect niche; one that’s flexible, low stress and somehow fits with what my body needs to keep it in this relative state of health. If that means I can never work again, so be it. For me, there appears to be a very fine line between decent health and total collapse. However, I do hope that this might change, as I do seem to keep finding things that help and maybe, just maybe, with a little luck and a lot of work, I just might get there someday.

Looking for a work from home job? Take a look at my tips for How to Find a Work at Home Job

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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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60 Day Check-in

triage-cancer-blog-return-to-workOn finishing my second month of work, I wanted to take stock of this little venture and offer an honest take of how I’m faring so far. In some ways, I’m pleasantly surprised. In others, I’m worried I’ve taken on more than I can chew. I’ve made mistakes. I’ve seen strides. It’s taking time to figure out how to balance my spoons. Overall I’m enjoying working the few hours I can manage each week and I’m bringing in decent money. But with the determination letter I just received from the Social Security Administration, I have to admit, I’m a little scared.

The first two months, I haven’t managed to work more than 55 hours, even though I can work 80 before the SSA considers it significant gainful activity. I just can’t seem to manage more than a 10-15 hour work week before I’m either out of energy or too symptomatic to continue and frankly I don’t know how I could possibly manage my life and do anymore. It’s not just that I don’t have the energy for work alone; it’s that I can’t keep up with everything I need to do to stay healthy. As it is, I’m not doing a very good job of keeping up with my physical therapy, fascia therapy, or cardio and my nutritional needs aren’t always being met, because I’m not always down for preparing everything from scratch as I should be with all of my dietary restrictions due to my mast cell and gastroparesis. And forget about housework and my other familial responsibilities. I’m lucky if I manage to keep our pill cases full, the cupboards stocked and the bills paid. It seems so minute, that 12.5 hour weekly average of hours worked, yet when it requires added recovery time, it really wreaks havoc on a life.

Then there’s the flip side, all the good things that go with working. I’m no longer so isolated and feel a strong sense of purpose and pride in putting myself out there to earn for my family. I’m bringing in an extra $450 a month on average, making our holidays brighter and paying down our ever growing medical debt. And despite how hard it can be at times to strike a balance, I am getting stronger and it does seem to be getting a little easier each week. Where I really run into trouble is when I start adding on fun stuff, like going out to dinner with friends, taking a short hike or contending with a holiday like Thanksgiving. There just isn’t any room for extras and I’m going to have to either sacrifice the fun stuff for work or work for the fun stuff because I simply haven’t found a way to stockpile enough spoons for both.

Then there’s the big mistake I made. I had planned on signing up for the ticket-to-work program back when I had thought I might be ready for full-time work. Well, since I proved pretty quickly that I was no where near ready for full-time work, I decided against it. I didn’t because going back to work part-time threw a lot of doubt on my ability to work full-time at this stage for all the reasons I’ve stated above. If 12.5 hours is so hard to maintain, how on earth would I manage a full-time job? Still, had I signed up for the ticket-to-work program, even if I wasn’t ready to begin working part-time, having the goal of going back eventually and working with them would have protected me from a medical review by social security. I should have done it and I didn’t and now the SSA is in fact putting me up for a medical review because I am working part-time.

I don’t suppose I should be too worried about it given that I still have all the medical conditions I had when I was originally ruled disabled and during my last review, not to mention my additional diagnosis or EDS, but I am in better overall health than I was back then and I fear it could be misconstrued that I am somehow “healed” or better than I really am because I am able to enjoy more time outside of my home and I don’t spend quite so many hours languishing in misery. Of course a large part of how I stay healthy and keep my pain levels low is to keep my activity levels low. I just know how the SSA works and anytime they have their gaze honed in on you is cause for concern. Will they understand that every time I do just about any physical activity I injure at least one joint if not more? Will they understand that while I’ve learned how to control my POTS pretty well, that doesn’t mean I now have boundless energy or no longer suffer from brain fog that still prevents me from doing the kind of work I did before I became ill? Will they understand that my primary form of pain relief is prevention because I’m unable to tolerate opiates and most other prescription meds and everything else does nothing more than “take the edge off” of my pain? I will have to do my best to make them understand, I suppose.

I probably sound a little down on the whole idea of attempting work right now. Perhaps that’s because I’m nursing three tendon tears right now and I’m coming off a very hectic week that’s left me exhausted, grumpy and stuck at home in PJ’s when I’d rather be out working or enjoying some holiday fun.  But that’s just it. I’d rather be working, as I know most of us would. I’m not worried that I’m wrecking my health or causing any serious damage. Even my tendon tears have nothing to do with the work I’m doing. They have more to do with lugging in groceries, the stairs that lead to my apartment and my love of 32 ounce cups (yes, I have tennis elbow from the repetitive motion of lifting my 32 ounce water off of my end table… only a potsie zebra, right?).

However, I would be remiss not to clearly state that if you do attempt to work at any level, you have to make super sure that you listen carefully and follow all the advice of your representatives and sign up for all the right programs. I made the mistake of not signing up for the ticket-to-work program thinking that it would be best to wait until I felt I was actually ready for gainful activity and here I am being reviewed. Learn from my mistakes. This is why I write. Not to show how brilliant I am. Not to show I can do disability better than anyone else. It’s precisely so you can learn from my mistakes. I may not always show you the mistakes firsthand, but you always get the benefit of my trial and error. And on this subject, I know I will feel much more optimistic once I’m better rested and this whole medical review business is behind me, assuming they feel the same way I do; that I may be somewhat better, but I’m certainly still disabled by my conditions. No one would love more to say it isn’t so than me, but I’m just not there, yet.