Category: Spoonie Writing

Out of Spoons, Spoonie Writing 0 comments on So Much for That

So Much for That

Recently, I was diagnosed with “probable Rheumatoid Arthritis” and given a prescription for medication that was supposed to help with inflammation.

After having some really nasty side effects, I started doing some investigation.  Sulfasalazine contains an ingredient called “pregelatinized starch”. The starch can come from corn, wheat, potato, or tapioca – and there is absolutely no way to check to see which one is is from.

Based on my symptoms, I am absolutely certain it came from wheat.  I’m highly allergic to wheat (and rye, and barley) and my body cannot process gluten.

So, my medication that was supposed to help me become healthier made me sick as hell – and I have stopped taking it.

And now, I’m wondering why my rheumatologist didn’t seem to want to know anything at all about my food allergies.  This could have been prevented!

by Jen
Out of Spoons, Spoonie Writing 0 comments on What Happens When Symptoms are Ignored

What Happens When Symptoms are Ignored

I used to have a Tumblr blog.  This post is a comment I left in a long chain of comments about an important topic that I don’t think gets very much attention.

The original poster, a woman, wrote in great detail the severity of her health issues, and how frustrated she was because her doctors flat out refused to listen to what she was telling them. Sadly, there were so many other women who had the same, frustrating experiences with their doctors.

They added their voices to the post.  Some of the younger women noted that their parents wouldn’t take their symptoms seriously, and that this prevented them from getting the medical help they needed.  I decided to add my personal experiences to the list.

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by Jen
Out of Spoons, Spoonie Writing 0 comments on It’s Not Just Celiac Disease!

It’s Not Just Celiac Disease!

There’s been a bunch of news articles and blogs posted that state that unless you have celiac disease you cannot possibly be harmed by foods that contain gluten. This concept is factually incorrect and completely irresponsible to spread around.

It’s time for people who are not scientists, who are not doctors specializing in allergies and/or auto-immune diseases, and who have no physical issues with food themselves, to stop writing insensitive blogs that suggest that people who can’t digest gluten are lying about it. It is dangerous to spread false information about food allergies.  Your misinformed words could wind up making someone severely sick.
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by Jen
Out of Spoons, Spoonie Writing 1 comment on Disability Denied

Disability Denied

Those of you who know me are aware that I have chronic illnesses.  These include allergies that are so severe that I need to carry an Eli-Pen, an inhaler, and take a bunch of medication every day. I’ve also got borderline anemia, and signs indicate that I have the rheumatoid arthritis that runs in my family.  (I still need to be tested for that.)

As such, I have applied for Social Security Disability benefits.  To be honest, I didn’t want to.  A few close friends, who know how truly ill I am, talked me into it.

To apply, you have to fill out a bunch of paperwork, have your doctors fill out more paperwork, and then got get examined by a doctor that the Social Security Disability powers-that-be select. I’ve done all those things.

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by Jen
Out of Spoons, Spoonie Writing 0 comments on It’s Not Easy to be the Only Allergic Person at Work

It’s Not Easy to be the Only Allergic Person at Work

I am among the many people who suffer from allergies. I’ve been this way my whole life, and it has become automatic for me to avoid the things that I will have the most severe reactions to. What I’ve never quite gotten comfortable with is the reactions I get from people who learn that I have allergies.

“Oh, you have allergies? What are you allergic to?” someone will eventually ask me.

I’m never sure exactly how much to reveal. There is something unnerving about pointing out to a complete stranger all the little things that are perfectly safe for the general population to encounter, which stand a good chance of killing me.
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by Jen
Out of Spoons, Spoonie Writing 0 comments on Thanksgiving Food Allergy Bingo

Thanksgiving Food Allergy Bingo

Thanksgiving is a holiday where everyone is hyper-focused on food.  That’s great for people who don’t have any food allergies and can eat anything they want to.  People like me, who have food allergies, aren’t so lucky.

I created this Thanksgiving Food Allergy Bingo as a coping mechanism for people who have food allergies and relatives that do not understand how series food allergies are.  Feel free to print out a copy and take it with you to Thanksgiving dinner.

by Jen