Caregivers Guide To Rare Diseases

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Besides a lack of information for rare disease patients, caregivers of those Rare Warriors have even less guidence. I remember leaving the hospital, no one gave any advice to my parents on what to do with me. You know what that created? A giant, nasty monster! All of the sudden my life was controlled down to the minute, I became “bubble girl” and their fear got the best of them. That awful experience inspired this post. As someone with a rare disease, I want to tell you that there are things you CANNOT control. It takes time to accept that, and when you do everyone will benefit.  Continue reading →

What “Being Rare” Has Taught Me

Two weeks before diagnosis.

Two weeks before diagnosis.

They say ignorance is bliss, and I would have to agree. In the weeks leading up to my hospitalization and being diagnosed with a rare disease, the last thing I thought about was anything health related. I was more focused on work and the daily stresses of life. Then when my world came crashing down, my focus was forced to shift. All of the sudden, I had to live day by day. I was no longer working for the weekend (be honest, you started singing that song in your head), the things that take up my time had to be carefully considered. These last 7 1/2 months have given me some interesting lessons. Continue reading →

Rare Disease & Relationships: Challenges

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There are a lot of topics that aren’t covered when it comes to rare diseases. One of which is relationships. Exactly what happens when one person becomes sick? Is the relationship complicated based on time spent together? Martial status? Which person gets sick? There are so many dynamics, it is impossible to discuss every possibility. I can only speak from experience on this. Bottom line, it is the most extreme challenge that any couple can face.

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Diagnosed With A Rare Disease, What Now?

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Cinco De Mayo in the hospital, my mom won a gift basket!

I see this question all over the internet. I was just told I have a rare disease, what do I do? Who do I turn to? What medications should I take? Am I going to die? There is no step by step guide to how to handle these issues. We don’t even have a set course of treatment for most conditions, everyone is different! And yes, you can die. At some point every single one of us will. You just cannot live in the shadow of that fear because it will not help you excel in your day to day activities.  Continue reading →

Healing Power of Pets

Happy Holidays From Kona!

Happy Holidays From Kona!

I have always loved animals, but the bond I’ve shared with my dog is extra special. Kona is sort of like a small child, she requires constant attention and loves to be right next to me no matter what I’m doing. When I got sick, all I wanted was to get out of the hospital and see her, so when the therapy dogs came around each day I was very excited! It made me realize just how great of an impact animals can make in the healing process.  Continue reading →

Rituxan Finale!

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I am happy to report that I completed my final round of Rituxan yesterday. My platelets were at an impressive 193,000, a nice number considering I am continuing to drop off the prednisone. I should be off that completely by next Thursday. Then I will wait for my adrenal glands to start working again, after a nice 7 1/2 month vacation. In addition to that, there are further challenges ahead.  Continue reading →

Prednisone Gift Guide

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If you’ve ever had to take Prednisone for any length of time, you will connect with what I’ve posted and tweeted about. The side effects are awful, there is really no way to avoid them and they linger long after you’ve taken your last pill. With the holidays just a few weeks away, I wanted to make a list of things that help me cope with it all. I high suggest everything I am about to show you, it has been tested by me with roid rage!

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Rituxan Round 3: Failure Is Not An Option

IMG_3797Forgive me for not writing about this sooner. I had to schedule my third Rituxan treatment on Wednesday due to the Thanksgiving holiday and it kicked my butt! I was flatlined on Thursday, very little eating and enjoying turkey day with everyone. I tried to make up for it by eating leftovers all day on Friday. And yes, your eyes aren’t deceiving you, I had 234,000 platelets Wednesday morning! Continue reading →

HIV/AIDS, Erase The Stigma!

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By now, unless you are living under a rock you know it is World AIDS Day. Today holds a special place in my heart, I was born in the 80s when HIV-contaminated blood products were a huge concern. I grew up understanding those risks and how special it was that my dad’s co-workers donated blood for my brother when he was born. From a very early age I knew about HIV/AIDS from the stories I heard about the blood drives, I never knew about the social stigmas attached to the disease. Just that at the time it was considered a death sentence.

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Redefining Thankful With A Rare Disease

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Major highlight of this year was seeing Sugar Ray at Epcot with one of my best friends.

With Thanksgiving around the corner, everyone is asked to reflect on what they are thankful for. I was always annoyed by this, because you could push this in all kinds of directions. You could be thankful for being alive down to your football team winning. What makes what one person is thankful for better than others? How about focusing on unique things that mean something to you specifically? After all, each one of us places different values on daily events.

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