Plan D, Part I: Genetic Testing

After learning I would not be receiving any further help from the oncologist or my PCP figuring out what is going on, I had to move on to my next plan of attack. For a variety of reasons – including the obvious reason that I am very symptomatic and had a suspicious Octreoscan finding from January – there is no way I can just give up. My current plan is to try and gather some more hard evidence and then, with the help of the Wizard, try again with another specialist…

a tale of two tumors

After learning I would not be receiving any further help from the oncologist or my PCP figuring out what is going on, I had to move on to my next plan of attack.   For a variety of reasons – including the obvious reason that I am very symptomatic and had a suspicious Octreoscan finding from January – there is no way I can just give up.   My current plan is to try and gather some more hard evidence and then, with the help of the Wizard, try again with another specialist.

I am getting very impatient waiting for the results of the genetic test to come back from the NIH.   If I do have MEN-1, I am most likely a “sporadic” case (i.e., I don’t have a clear family history of MEN-1).   I already know that roughly 40 percent of clinically confirmed sporadic cases do not…

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Mixed Bag

Zebraontheside

Tomorrow I have an appointment with my local endo. This is only the second appointment with him. I have not had two endos for about 10 years. On one hand, it is nice to have a local doctor but on the other, it is a bit awkward. It is hard to build trust with someone that does not have the expertise or reputation of my lead endo. We already have an issue that I will have to address tomorrow. I needed something from a local doctor and asked him. His medical assistant said in a snotty way that he does not “do” Armour and then asked if I would go back to 100 Levoxyl. Well, my medications were changed so I won’t. Hopefully there will be less attitude from him tomorrow.

It is funny because I did not ask for Armour. My primary endo asked me how I felt about…

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Day Thirteen, Cushing’s Awareness Challenge 2015

This is one of the suggestions from the Cushing’s Awareness Challenge post:

“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”

Our “Official mascot” is the zebra.

Our Cushie mascot

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.

zebra-mug

A zebra cup my DH bought me 🙂

By 1960, the aphorism was widely known in medical circles.”

Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?

 

 

 

Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.

I posted this in 2010 in 40 Days of Thankfulness: Days Twenty-Two through Thirty

I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.

Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.

I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.

Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?

Butterflies are something else again.  I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.

My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.

From July, 2008

For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.

One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.

The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.

Hope springs eternal, though!

 

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