Ellie Vs. Hereditary Ankylosaurus

Dear friends,

a thing has happened.

A few days ago, I wrote about how one of my current challenges is having painful episodes that seemingly come out of nowhere that make me awfully sick, and that I was turned into a lab rat for several weeks only to come back with no answers. Two weeks ago, I had a very minor surgery called an Endoscopy. I don’t really consider it a surgery, but technically it is, so says the surgeon that performed it, and it is never a good idea to argue with the person who is dissecting you, so I will believe her. They really just loaded me with drugs, shoved a camera down my throat to take a peek around, and also did a biopsy where they took a few samples of my different parts for good luck. That all came back normal along with all the other tests.

However, the surgeon, before I was sedated and became silly, gave me a little interview, and after hearing about my current episodes and my past history with anaphylaxis, wanted to test me for something called a C1 Deficiency, which is apparently also called Hereditary Angioedema (Angioedema. Not ankylosaurus, but I have an affinity for dinosaurs, so I decided to dinosaur it. Sorry). I honestly don’t know a whole lot about it at the moment, since I only started researching this morning, but http://www.haea.org states:

Hereditary Angioedema (HAE) is a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people. HAE symptoms include episodes of edema (swelling) in various body parts including the hands, feet, face and airway.

In addition, patients often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the intestinal wall. Airway swelling is particularly dangerous and can lead to death by asphyxiation.

Yeeah. So…that doesn’t sound very fun. The blood tests for this particular illness came back suggesting that I may in fact have it because the C1 results were all low. I have some of the symptoms, not all of them, but enough to make the doctors worry. This is not a true diagnosis quite yet. The next step is to see an allergist on Wednesday, and I am willing to bet I will probably have a few more tests in my near future. Until then, I am trying not to panic or freak out. If I was an amazing liar, I would say I am completely fine with this, have it under control, and will deal with things as they come. But I am a terrible liar with anxiety, so I will tell you the truth; I am nervous and I am worried and I am very, very scared.

Part of me feels as if this has both good sides and bad sides. But really, it has a lot of bad sides.The only good side is that I may no longer be in medical purgatory, floating about in empty space because no one can figure me out. This disease sounds pretty awful, but at least the mystery may have been solved, at least with this. It’s strange, because part of me hopes that I am diagnosed with it so that I know what I am dealing with and can get it under control, while the other part of me is terrified of this disease and how dreadful it sounds. I am equally terrified that they will say this isn’t what I have, like so many times before, and I’ll be thrown right back into purgatory indefinitely. This particular situation doesn’t really seem to have a winning side, does it?

Sometimes people don’t understand why I get upset when I have tests come back that are normal and am told there is nothing wrong with me. It’s really simple though; you cannot fix what you do not know. The longer I go undiagnosed, the longer I am suffering because no one, not myself or doctors, know how to help me. So I just sit and suffer while I keep being told I am “normal.” But as I said before, there is nothing normal about being this sick. I am always so very scared that I will get diagnosed with something that may either ruin my life or even kill me, while also being scared that I am going to spend the rest of my life as a miserable little mystery until my body finally has enough. Again…no winning side. I’m a little frustrated about it.

Well, for now I know that worrying will not help. My soul doesn’t know that, but my brain does and is currently trying to convince the rest of me. I don’t think it’s going all that well. Whatever happens though, I will fight. I have fought my entire life, and I am nowhere near done yet, so I will fight more. I want to have a healthy life, I want to have a fun life, and I want to become something more than a patient. The universe can always be assured that I can be a stubborn asshole sometimes, and I will be just as stubborn whether I am fighting disease or dinosaurs. I’m really hoping for more dinosaurs than disease. Maybe I can befriend one and ride him to work. I’d name him Michael Ceratops. Sigh…A girl can dream right?

Everything is a lesson
Lesson #1 through infinity
You will never have a greater opportunity to learn to love your enemy than when your enemy is your own red blood
Truce is a word made of velvet
Wear it everywhere you go.

Andrea Gibson- An Insider’s Guide on How to be Sick


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