Category Archives: Ilana Jacqueline

Ilana Jacqueline works as a publicist and freelance writer in Boca Raton, FL. Her blog, LetsFeelBetter.com was created to share tips, advice and personal stories about her life and experiences with a rare and chronic illness.

And then I’m all like, “I’m a chronic illness GENIUS.”

In the 22 years that I’ve stuck it out– I’ve owned companies, met my soul mate, am raising my second poodle, live in a decent apartment, am one credit shy of my degree, published articles, published books, met some heroes, made some friends, and one more thing….

…was diagnosed with not one, but two rare diseases with doctors estimating there must be one more that remains undiagnosed.

Considering the fact that I’m TWENTY TWO as in not EIGHTY TWO I can sometimes get a little pissy about the 10 medications I take every morning to wake up, the five hours I spend every week getting infusions, and the fact that even during my best months—I can’t always maintain my client base with my continuously interrupted schedule.

Lately it seems that If you were looking for a pattern to my life, it would be one step forward and two steps back.

I’ve learned some things since my body up and crapped out on me: Chronic illness is complicated.

See–Chronic illness doesn’t care if you have things to do. It doesn’t care if you can’t walk down the aisle on your wedding day. It doesn’t care if you have to struggle to sit through your graduation ceremony. It doesn’t care if you sleep well, eat well, or take your medicine on time. It doesn’t care if you’ve got a big meeting in the morning, or a special dinner later tonight. Chronic illness is kind of an asshole. And if you have it—sometimes you’re going to feel like one too.

Like when you miss your best friend’s birthday party because of it.

Or when you hem and haw about buying plane tickets to New York because you just don’t know how you’ll feel on those days.

Or when your dog just wants to play and you just can’t.

Sometimes it serves a purpose. Like knowing all the best pick-up spots for chicken soup. Or always having a spare painkiller/anti-histamine/lozenge/sleeping pill in your purse for the friend in need. Or just being the one who constantly makes the whole group take bathroom breaks when one of them has just drank a 42oz Gatorade.

But however limiting, degrading, time and energy thieving chronic illness might be—life with it is (ironically) all about making choices.

The more I learn about my disease, the more I try to take responsibility for it. I recognize that whatever I do right now is going to affect me later on. I know that NOT speaking up and going to the doctor when symptoms strike usually means that they’re going to get worse, not better. And I realize that not sucking it up and dealing with it on certain occasions can mean the difference between the people around me respecting me or alienating me.

Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future. Its knowing that there is nothing wrong with wanting when there is still the hope of having.

I’ve thought about a lot of ways I could cope with all the mishegoss in my life. After some research I realized that support groups are depressing and misery?—boy, it just LOVES company. I also got that listing off my complaints one by one to my boyfriend is probably as painful to him as his recounting a particularly intense chemistry experiment to me.

Which is why I’ve been kind of stumped about whether or not to start a blog. Rewind: To me, blogging is like the number one solution to any problem in my life. Unemployed? Start a blog! Stressed out by pet ownership? Blog about that sh*t! Ten pounds overweight? BLOG IT FROM THE MOUNTAIN TOPS!

But what could blogging about a chronic illness really accomplish? Was it going to make me feel better? Last time I checked blogs can’t pull out an infiltrated IV—I don’t even think they even qualify to dispense ibuprofen.

So I did my research and started to see what chronic illness bloggers were actually getting out of their websites. After some reading I started to get it—here were all these posts bitching and complaining and getting melodramatic about the woes of not being able to get through the grocery store—and I realized: that was such a simple problem. Hell, I’ve had that problem for years—and now I know how to deal with it. Because I’ve been there.

Bingo.

I’m like a chronic illness genius compared to these ND&L’s (Newly Diagnosed and Lost.)

I have notebooks full of tips on how to not die and how to even LIVE on a daily basis. I could probably, actually help someone have a significantly less sh*tty day!

Poof. Blog created. Let’s do this: LETS FEEL BETTER!

Support

The difference between being diagnosed with a rare disease and being diagnosed with breast cancer is a powerful comparison made by Nicole Boise on yesterday’s segment of Unveiling the Mystery: Rare and Genetic Diseases on Lifetime TV’s Daily Morning Talk Show: The Balancing Act.

Click on the picture to see the video!

It’s so absolutely PLAIN to anyone with a rare disease, but few people actually take a moment to fathom what it must feel like to walk into a doctor’s office and to know with a few simple and readily available tests that:

  • -You have a disease
  • -You have local support
  • -You have national support
  • -You have millions of dollars being donated daily to the research of your disease
  • -There are millions of resources on a financial, emotional, and educational level at your disposal
  • -The stigma associated with your disease is one of bravery, championship, and fight

Whereas when you have a rare disease you’re walking into a situation where not only do you personally know nothing about your illness—but neither do your doctors, your friends or family, local mental health resources, and sometimes even Google doesn’t turn up many results!

“Rare Disease is not RARE,” says Boice, who cites over 7,000 diseases which fall under the criteria of “rare.”

Nicole founded The Global Genes Project, an organization literally formed to organize for a sense of advocacy to those in the rare disease community—from children to adults, genetic to immune issues, and for patients across the globe who seem to stand alone in their efforts.

The work of the Global Genes Project is extremely important. Without their tireless efforts to unite this community of patients who fight in their search for answers, information and cures—to the desperate parents who fight for the children who can’t yet fight for themselves—there is absolutely something to be said for idea of strength in numbers.