Archive for September, 2013

An illness by any other name…

September 13th, 2013 by Carrie, the Just Mildly Medicated gal

During Invisible Illness Awareness Week many people bring awareness by filling out the “30 Things about Me and My Illness” questionnaire. For me that was the beginning of my being open about my life with Pure Autonomic Failure, also called Bradbury-Eggleston syndrome, which falls under the umbrella of Dysautonomia and causes an imbalance in each of the bodies involuntary functions.

In the questionnaire people are asked to answer and elaborate on if given a choice would they choose a visible medical issue or an invisible illness. The answers vary from person to person and often times when revisited our answers change. People frustrated with explaining ever changing issues with an invisible illness may think they’d trade for something visible; something clear and inarguable. Others, like me a year ago, were content with invisible feeling a sense of control over inviting people in to know the struggle or not.

This year I found myself on a slightly different version of this question…

If the choice was mine would I chose a different, yet just as debilitating, illness?

For example Pure Autonomic Failure has 2 other ‘sister illnesses’ that are sometimes categorized as Primary Autonomic Failure. The other two medical conditions are Multiple System Atrophy (Shy Drager Syndrome) and Parkinson Disease. Back to the days of my Sesame Street viewing; one of these things is not like the other. One is a household name; the other two are fairly unknown even in the medical community.

Would I trade my illness for one that was equally debilitating but a household name? YES

Please keep in mind I am not comparing the illness per say, more the social awareness of a name.

An illness by any other name…

Michael J Fox has brought Parkinson’s research to a whole new level and is about to bring it into your living room with his new show starting this month. Many people thought Dr. Gregory House did Lupus a disservice by always saying that the diagnosis was in fact never Lupus. What we have to agree on is House made sure everyone knew the word Lupus. Now I am not saying I need a celebrity spokesperson or a TV shows catch phrase, but it sure does help with bringing awareness.

Just like the original question posed in “30 Things about Me and my Illness” my answer may change next year, or even tomorrow.

What about you, would you trade your illness for one people have a basic understanding of or maybe you have a more publicly known illness that you’d trade for something that hasn’t been in the media giving people the assumption they know about it?

30 Things about Me and Dysautonomia 2012

 

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Tietze’s Syndrome, ouch

September 3rd, 2013 by Carrie, the Just Mildly Medicated gal

So I have added something new to my list of medical issues, Tietze’s Syndrome.

What the heck is that you ask?

It is an inflammation of the costochondral cartilages of the upper front of the chest that involves pain and palpable swelling of the rib bone lining and joint. It can often be mistaken for Costochondritis, but Tietze’s Syndrome includes swelling where Costochondritis does not. It can last a few weeks to a few months and on rare occasions it can be chronic.

All of the blue area is inflamed and painful to different degrees, some only to touch and others hurt when breathing.

The swelling is not so easy to see because… well… most of the front of my rib cage is appropriately covered, but you get the point. I was getting ready to FaceTime my mom when I saw my image and giggled, mostly because my hair looked like I was a lunatic, but after that I sighed because I could see where I hurt.

Chaine

I didn’t want Chaîne to be blamed for any swelling so I circled her. Chaîne is my port, she is deaccessed in this picture, meaning no needle. (yes, deaccessed is a word)

For a reason unknown to me as I am not a medical professional, I have gotten a cart before a horse again.

A syndrome, in short, is the crap that you’re stuck with because of a disorder. Tietze Syndrome can be a result of fibromyalgia, psoriatic arthritis, lupus, rheumatoid arthritis, even Crohn’s.

So which do I have? Well, I don’t know yet. First I am being treated to see if we can just make it go away with some anti-inflammatory meds and a something for the pain. Am I on board with this as a long-term plan? No, but sometimes you bend to the system because stomping your feet just hurts too much.

Signing off…

The Just Mildly Medicated gal