Spoon Shares

Finding Wellness Together

Friends, Family, & Reactions from Others

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Friends and family are super important in your adventures with chronic illness—good relationships can sustain you through hard times, while poor ones can make everything a little bit harder. Many spoonies say that when they first got sick, they learned exactly who their real friends were very quickly. That being said, even the best of friends and the most well-meaning of family members will need a little help in order to best help you.

One of the most important things, you’ll find, is the ability to clearly state what you need. This can be hard (especially if you’ve never needed to negotiate in your relationships), but it’s absolutely worth the trouble. Being able to discuss your needs requires two steps: [Read more…]

Work & School

As a spoonie, the normal duties of work or school can become incredibly overwhelming. Depending on the severity of your condition, as well as the treatments you’re looking at, you may need to receive accommodations, reduce your hours/course load, work from home, or quit entirely. When you’re spending all of your spoons trying to survive, it can be hard to follow the script of “go to school, get a job, and work 40 hours a week until retirement”—and that’s absolutely okay.

Most of the world considers school and work to be the bare minimum of a worthwhile life, which is somewhat flawed; it doesn’t make space for folks with special needs or disabilities. Nevertheless, you’ll likely meet people who fault you for deciding to prioritize your health, and you’ll probably spend a good time being angry at or disappointed in yourself for not being able to meet that standard. In those times, just remember that this is only a cultural script—you can have a full, productive, and fulfilling life even if you step outside the standard pattern. Caring for your health and well-being is of the most importance.

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Working With Doctors

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Working with and finding good doctors will probably be the greatest challenge you face as a spoonie, mainly because the skill of your doctor will impact every part of your life, including your physical health, mental health, relationships, insurance claims, and any accommodations you may receive. A lot of folks are raised believing that doctors are somewhat of a magical breed: you go to them and they fix you, full stop. However, where chronic illnesses are concerned, the lack of research and understanding of the symptoms you’re experiencing will likely reveal how incorrect this belief is.

Doctors, like us, are fallible; they only have so much knowledge, and they can often be swayed by their own personal opinions. Because of this, choosing a good doctor—even if it means “dumping” a bad one—is absolutely vital. You may feel like or be told that you’re being too high-maintenance, but remember that you deserve to have a doctor who helps you and with whom you feel absolutely comfortable. [Read more…]

Getting Answers

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Getting a diagnosis is a very important step in your journey of chronic illness. Along with giving you a better understanding of what’s going on inside you, it can help with the process of getting accommodations and processing insurance claims. Although a diagnosis isn’t likely to be the end of your story, it’s certainly something you’ll want to pursue if you’re able. [Read more…]

My Gastric Neurostimulator

Meet Jarvis.

He’s my gastric neurostimulator. He lives inside of me.

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No, he does not turn me into a wifi hotspot, much to my chagrin.

But he does something much better. He helps treat the nausea and vomiting symptoms I experience as a result of my gastroparesis. This small device sends small electrical pulses that are intended to dull the nerves related to nausea.

I often see posts on social media sites from people who are considering the gastric neurostimulator and are desperately seeking advice from people who have had it implanted. Hell, I used to be one of those people.

So here is what I would like to say to each person considering the pacemaker, framed as a Q&A.

[Read more…]

Boobbombs and Faceplants: My Adventures with Tramadol at my Friend’s Wedding

Let me tell you the story of when I was high as a kite while in my friend’s wedding.

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It wasn’t on purpose, mind you. Not like we all smoked a big bag of dope before the ceremony.

Although tequila shots were had by some. Not me — I can’t drink alcohol. 

But I was on a pill called tramadol for the first time and it had an…inconvenient effect on me. [Read more…]

Disclaimer

None of the opinions or experiences expressed on this site is professional medical advice tailored to your own situation. Please consult a medical professional before making any changes to your health management plan.