An open letter to healthy people from a former healthy person

I’m in tears, silently cheering for this amazing warrior who is standing and giving a voice to all chronic survivors as you will be.
I hope you will rise up with her and pass this along.

Whether you have a chronic illness or you know someone with one, this wise young woman’s words will help to give meaning to so much that is unexplained.

BeingCharis

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Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

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How to Read a Newspaper

How do you feel when you hear that someone with your same condition has gotten well?
This blogger explores the honest thoughts and feelings she and so many of us experience when a fellow Spoonie recovers.
I hope you enjoy reading this post as much as I did:

Tips for ME

Scenario: we read a newspaper article about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. Our initial reaction probably includes some combination of these thoughts:

• They were never ill in the first place.

• They were ill but it’s not true that they are now well.

• They can’t have had what I have.

• It’s true that they recovered but for a different reason.

• It’s great that they found a way to get well.

• If I try that will it work for me?

• I’ve been ill much longer, I’d know if that works.

• Why have I been ill so long? It’s not fair.

• The newspaper has got it wrong.

I think these reactions could do with some unpacking.

They were never ill in the first place.

After we’ve got over our initial reaction this thought is probably the easiest to kill…

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Medicating with Marijuana may not be for you if….

With more and more states in the US permitting the use of medical cannabis for different conditions, questions about medical marijuana have been on the lips of nearly every person with a chronic or progressive condition.
Author/blogger, The Disabled Diva answers your questions and curiosities in this totally dope article 🙂

The Disabled Diva Blog

  

Have you been considering medicating with marijuana?  Choosing to treat my chronic conditions with marijuana was the best decision I have ever made regarding my health.  While it has given me new life, I also understand that it isn’t for everybody.  So how do you know if it is for you or not?

Medicating with marijuana may not be for you if…….

….. you do not have access to any medical marijuana dispensaries. Never purchase marijuana from a street dealer!!!! Dispensaries provide clean marijuana and you can be confident that it wasn’t tainted with anything you wouldn’t want to put in your body.

….. you believe that your doctor will support your decision.  Although two of my physicians have not discouraged me from medicating with marijuana, they don’t necessarily support it either.  One understands that it is my only choice because my body reacts so badly to prescription pain…

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Sleep, Perchance to Zzzzzzzzz

My friend and one of my favorite writer/bloggers, Mark Aldrich at TheGadaboutTown.com writes courageously on his journey with Spinal Muscular Atrophy and his sleepless inner critic.

The Gad About Town

We measure the quality of our day by the number of achievements we have. Number of documents published versus quality of work, or the number of times this week we beat personal commuting records to and from the office, or numbers of reps at the gym, or, worse, for those dieting, number of days without “cheating,” which represents even more harsh ways to harshly self-judge.

We live in a culture of Other Peoples’ Success and thus exist in a competition with others for more successes than them and yet better ones. This is because, as Brené Brown, a famous sociologist, points out, we live in a “culture of scarcity. We wake up in the morning and we say, ‘I didn’t get enough sleep.’ And we hit the pillow saying, ‘I didn’t get enough done.’ We’re never thin enough, extraordinary enough or good enough—until we decide that we are. The opposite…

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I Am Not Your Inspiration: The Problem With Inspiration Porn

My good friend at one of my favorite blogs, Findingoutfibro wrote this amazing post below!
Finding the good in your struggle and using it positively is definitely something to be celebrated; however, when others forget the good you choose to share is born from the daily struggle you STILL live in…that is where the problem lies. Please continue reading:

Finding Out Fibro

The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.

If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy…

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When you say I do…

My husband has been my caretaker for the past (almost) 4 years since I have been bed bound. Before that, I was chronically ill for 7 years prior and used walking aids yet remained mostly independent and continued working, though life for both of us was constantly changing. Through 10& 1/2 years, illness builds walls that we continue to find ways to scale, breech, knock down, or peer through at one another despite the seemingly impossible circumstances.
Even though I often choose to discuss and focus on the things about my relationship I am most grateful for, there are multiple hardships being in a patient/caregiver scenario that are very personal between us.
If you are in a relationship and one or both of you has a chronic illness (like my husband and I), I encourage you to read this wonderful article from The Unbroken Smile’s blog discussing marriage and chronic illness.

Rare Disease Day

One of my favorite writer/bloggers, Mark from The Gad About Town discusses the importance of the upcoming Rare Disease Day. He shares his experience with his own rare disease, SMA and how it effects his body.
I live with my own “rare” illnesses like POTS, CRPS and IH to name a few. Many would argue that these are not rare given the estimated number of people living with the same illnesses. In the medical world however, these conditions are so rarely known.
My friend and blogger Mark from The Gad About Town so eloquently explains what it means to have a “rare” illness, and why we share information on occasions like Rare Disease Day.

The Gad About Town

One friend has antiphospholipid antibody syndrome, which causes blood clots to form in any blood vessel in the body and leads to transient ischemic attacks (TIAs), or what she cheerfully refers to as “mini-strokes.” (Most people who have recurring TIAs call them mini-strokes; my friend has the happy quality of coming away from hers with anecdotes about the experience that make them almost sound like something I want to have, too.)

One of my closest friends has fibromyalgia, a disease of chronic pain with a “here today, gone tomorrow, here again and worse” pattern-less pattern of symptom presentation that sometimes renders her almost breathless with the pain. Everyone experiences physical pain, but a full-body stabbing pain with no traceable cause, and thus not many ways to treat it?

Other friends have multiple sclerosis, one whose symptoms are affecting his balance and control of his legs, and one whose hands are…

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Beauty: Peeling Back the Layers

Finding out Fibro’s writing has inspired me in such a beautiful way. She is always pushing herself to dig deeper, to persevere despite chronic pain and setbacks with her health, and she is so willing to pour her soul onto the page, sharing it so generously with her readers.
This is one of her most intimate, raw expressions of her truth pouring out; my favorite of her posts. I’ve been saving it to share with you.
Hold onto your socks!

Finding Out Fibro

I’m still getting used to the idea that I can’t be fixed, because I’m not broken in the first place. Everything good about me is still here. I am not worth any less than before I became ill.

Harder to get used to is the idea that I didn’t do everything wrong; that this is exactly where I need to be right now.

Hardest of all the lessons I am learning is that I too deserve to be happy and loved. I even deserve to love myself, for that matter.

Crazy how notions that seem so simple and straightforward, things I tell people all the time and think I understand, will refuse to fully sink in for myself until the right moment.

It took me until this year to realize that my vision of my own relative unattractiveness was based on something false all along, which is the idea that women (or anyone…

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Counting Down to the New Year: Setting SMART Goals for Health & Wellbeing

As we move toward the new year, I’ve felt unsure and overwhelmed about what is next. Even though none of us know what tomorrow will hold, setting goals for ourselves and allowing ourselves to get excited about the future…having HOPE is imperative. One day at a time, absolutely. But this article from blogger Life in Slow Motion explains how to set a few specific goals for yourself going into 2015.
For me, it came at the perfect time. I hope it helps you feel more prepared and positive about the year ahead.
Blessings on your journey.

Sage Advice

Kathleen from Creating Through the Pain shares a heartfelt account of how her God-Father guided her after diagnosis:

Creating Through the Pain

Pain wouldn’t be so bad, if it didn’t hurt so much. My Godfather said these words of comical wisdom (he had many) at the end of a particularly grueling physical therapy session after my initial diagnosis of Reflex Sympathetic Dystrophy (RSD).

He made me laugh when the best I could do was a grimace. Once I started laughing I could not stop until my body doubled over my walker and I had tears in my eyes. I am sure people around me thought I was losing it! But I think that the irony of laughing amidst all that pain just set something off in my head.

I am very competitive and since I was lousy at sports (yup, I was the one always picked last for gym class—but I’m not bitter…maybe a little), I focused on academics. That competitive part of me kept climbing higher on the corporate ladder and…

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