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!

Comments

comments

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

  1. Jules

    I am also living with a chronic illness, although my issues are mental and possibly neurological. My symptoms have recently increased past the point where medications are not working and I have to take some drastic new action, except none of my doctors have seen anything like me. (#1! haha). I’ve also been having grand mal seizures for the last two years and it was only recently that I could even get my doctors to admit its not effing syncope; I’m not fainting, I’m seizing. I’ve been thinking my diseases have ruined my life. I lost my job, my relationships suffer by my own doing (because I can’t control my emotions or reactions, which is both debilitating AND humiliating, and I’m so tired of people accusing me of copping out. But in the last few days I’ve had some realizations based in part on the few posts I’ve read. I have to admit defeat and get some state assitance, and thats ok because it was designed for people in my situation. My goal is to keep as much of my treatment outpatient. As much as it can be needed, no one likes to be locked in a ward. Anyway, I’m rambling. I just find you really inspiring. You my same age and you’ve accomplished all these dreams I have that I’ve been putting off for when I’m “better”. But I might not get better, so if I want to be happy and productive I have to put in the work, no one else can do it for me. And with my illnesses already adding so many “can’ts” to my vocabulary I really can’t afford to limit myself out of fear and ignoring it hasn’t worked my entire life, why in the world would I think that would be an effective strategy now, especially if this brain thing is bad? Might not have till better to start doing. So thank you so much for this gem of a blog. I will continue to read and I wish you the best of luck. My god, I’m glad you realize how clever you are because it is hard to be such an effective person when even your body won’t comply, and “you don’t look sick”, and “you’re only 23, you should be doing more”. Bravo. And again, thank you.

  2. Rachel

    I’m glad you decided to start this blog. I’ve had a chronic daily migraine for 5 years and am suspected to have POTS as well, and some of the other stuff online seriously is just depressing, and not even helpful enough to make it worth it. So far, looking through your other posts, it’s like you wrote exactly how I feel about everything, but more eloquently then I probably ever could (: I’m almost tempted to just send some of these posts out to my friends and family so they get it, but then again they might still not..

    • Nynah Mason

      FWIW: My many years of migraine – to my amazement – respond to riboflavin (mito is the cause). When the doc told me to take a vitamin for it I thought he was pulling my leg. 45 years of migraines stopped o
      day 4 of B-2, no kidding.
      Ask your doc!

  3. It sure took a lot of research to make an article like this.

  4. This was a feast for the eyes!

  5. I came to the same exact conclusion as you did.

  6. I’m not a big fan of sauce.

  7. I never knew pants came in so many different colors!

  8. Don’t forget the grilled onions!

  9. Way to go Edward. This blog is amazing!

  10. No one can ever say this site is boring!

  11. Would you like some popcorn?

  12. These two are some real messy eaters!

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