Rare Disease Day 2019

Today, February 28th, is International Rare Disease Day.  What is a rare disease? The answer to this question varies depending on where in the world you live. If you live in the United States like I do, in order for a disease to qualify as rare, less than 200,000 people are affected by the illness …

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Changes to the Blog

As some of you may have noticed, I decided to change the page names and URLs on the Medical History section of my blog. Instead of labeling the page according to a diagnosis, I've decided to list them according to the medical specialty that treats that diagnosis. There are several reasons for this but the …

Blogmas Day 12: Christmas in Review

I am going to be blatantly honest… I don’t even know how to start this blog post which is why it is so late. We have talked a lot this blogmas about the new tradition my family tested out in place of exchanging material gifts for Christmas. And considering how much I spoke about it …

Birthday Expectations

  Tomorrow (10/12) is my birthday… And as my birthday approaches, I have been struggling more and more with the fact that I am not where I expected to be at 27 years old.  If you had asked me asked me 10 years ago where I would be today, I would have said that I …

Communication is a Two Way Street Paved in Frequent Misunderstandings

Shortly after becoming ill, in June of 2016, I started a support group for people who have intracranial hypertension and their loved ones called IIH Warriors. This group gives people who have IIH or are a caregiver of someone with IIH a place to commiserate in their pain and difficult experiences, share helpful tips, vent, …

Hold On and Wait

Trigger Warning: Suicidal Thoughts This week (September 10-16, 2018) is National Suicide Prevention Week here in the U.S. There is no denying that living with chronic illness is a daily struggle and can take a toll on your mental health... Especially when those chronic illnesses bring along with them chronic pain and other debilitating symptoms …

Learning NOT to Equate My Self Worth with My Accomplishments

To be honest, I am not entirely sure how to start this post… But I feel like that may happen quite a bit in the future as we cover difficult topics that make me vulnerable. So in my last post I talked about how I have officially been sick for three years. In those three …

Three Years to the Day

It’s difficult for me to wrap my head around the fact that 3 years ago yesterday I was completely healthy. 3 years ago, yesterday (August 28th) I finished work, enjoyed Friday night dinner with my family, drove to a friend’s house, shared laughs around the bonfire while they all drank, drove home, crawled into bed... …