Monthly Archives: July 2014

23Jul/14

World Sjogren’s Day

Today is World Sjogren’s Day.

I’m not a doctor, so it’s hard for me to explain this little know auto-immune disease to people when they ask about it. What I usually say is, “Well, it’s sort of like Lupus, but it targets parts of your body that make moisture.” And that’s an extreme over-simplification, but it gets the general idea across.

The Sjogren’s Syndrome Foundation gives a slightly more scientific explanation without getting too technical:

“Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.”

The SSF estimates there are currently four million Americans with Sjogren’s. My mom is just one of those people. Like IPF, there is no cure for Sjogren’s and the general treatment plan consists of throwing various drugs, ointments, and drops at the symptoms. For people with severe cases or who have organ involvement, doctor’s will often prescribe immunosuppressants.

Mom was given Imuran last summer, but that ended after two hospitalizations.

Please consider making a donation to SSF.

17Jul/14

Right in the FEELS

The GoFundMe fundraiser for mom went live about 24 hours ago. Mom and I had a lot of mixed feelings about the idea of fundraising. It’s not easy to ask for help. And, perhaps even more so, asking for help for my solidly middle-class parents.

In September of last year my mom reached the point where she was too sick to continue working. She applied for Social Security soon after, but wouldn’t receive her first payment until March of this year. My dad is a commission salesman and only gets paid once a month.

They have some savings set aside but chronic illness in a now single income family adds up. Quickly. Even with insurance.

My mother said this today on Facebook:

“It is quite a blow to lose your income. Disability payment doesn’t even come close at a time when ill people have more expenses than ever.”

What little money they have set aside will be gone quickly, and though I know my father would drain his retirement account and never regret it, he’s going to need something to live off of after she’s gone. My parents should be enjoying what is likely their last few years together, not worrying about how to pay their bills.

When I setup the fundraiser I knew it was something I needed to do to keep my parents from being swallowed by medical debt in the coming years as my mother’s illness progresses. What I didn’t anticipate was how it would feel to see those first few donations come in. I cried.

These people care enough about me, my mom, and my family to give their hard-earned money away, and “thank you” just doesn’t seem adequate.

I don’t know that there are words in existence to explain our gratitude.