When I finally found the Intracranial Hypertension Research Foundation it was as if my whole world had been changed. I cried for everything, out of happiness, relief, frustration and pure terror. Before I ever had an affirmative diagnosis I knew in my heart that IIH was the cause of my pain and that meant that I had a rare brain disease – but it wouldn’t kill me. Suddenly I was filled with hope like I’d never had before. Standard courses of treatment failed and so I was to have brain surgery. Brain surgery. It was the best thing I could have ever done for my health. Hope for brain surgery? Abso-freakin’-lutely. Never in my life have I felt more human or alive than I do now, and getting better every single day. That’s a blessing.
A woman who I have never actually met but have come to admire greatly recently mentioned on Facebook that she thought she had found a cause of IIH. While I skimmed the post I didn’t have time to pay much attention until Monday. What she had found was Hughes Syndrome and for the second time in a year I felt an A-HA! moment come on. While reading through the official site I started getting jittery, and well, excited. Excited for another problem? Yes!! Why? Because I didn’t ask for these issues. My only guess is that God felt I could make some good come of the situation, help champion a cause, something He thought I could make of this.
Hughes Syndrome is akin to having “sticky” blood. People with Hughes tend to form clots at a much higher rate than your average individual, resulting in an increased risk of stroke and heart attack, among other things. What’s more is that it can also cause headaches and/or migraines AND pregnancy problems. Understanding my A-HA! moment yet? Even with my shunt I am still having headaches but they’re not pressure headaches, occurring at least every other day. Obviously I’ve had fertility issues that we are still finding the cause of. But what stuck out to me was the presence of a skin condition called livedo reticularis. When I saw the picture, I laughed. Out loud. At my desk. I’m sure my coworkers thought I was crazy.
For as long as I can remember I have been pale as a ghost. My skin tans in the summer only to the color of a normal person’s “white”. As pale as I am though I am also very pink. Around the age of ten – about the same time I started really noticing my headaches – I developed what my mom thought was a rash on the inside of my legs and forearms. We had recently gotten a kitten and the doctor told my mom that I had ringworm, and to put an anti-fungal cream on me when it flared up. That was over 15 years ago and I gave up on the cream almost immediately because it did nothing.
During the winter the “rash” always got worse, making me look like my capillaries had all come to the top of the skin in a webbed pattern, especially if I’d spent a lot of time outside. As an adult I still have the issue and I know that it wasn’t caused by any pets. My laughter outburst? Caused by this photograph.
Why laughter? Because that is EXACTLY what my skin looks like. To a tee. Epiphany? I think so. So what’s the good news? It’s that the condition can be diagnosed with a simple blood test, and depending on the severity it can be treated with as little as one baby aspirin daily. That’s it. So for the last 15 years or so one little, bitty baby aspirin could have kept me headache-free. While not proven, it is a likely theory. I am giddy with excitement of having the test done to see if it’s true.
To top it off? While researching Hughes there was a possibly related article titled, “Can a baby aspirin help you conceive?” Again, not a proven theory but a possibility and at this point, we will try anything.
Fifteen years. The thought upsets me, the things I may have missed and the years I spent needlessly suffering – a fact for which I am eternally grateful because without the hardships I wouldn’t be nearly as strong as I am today.
Love, KC
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