Eye See…or Not.

So last month, remember when I mentioned my eyesight slowly worsening?

I finally got around to (read: stopped putting off. I’ve had two throacotomies and yet somehow am a big baby when it comes to having my eyes messed with) seeing the eye doctor this past Friday. But not really, because I actually walked out of the office after waiting for an hour in a waiting room with over 17 patients and a lovely smell of overly-used public restroom that was making my sister and I gag. The receptionist also decided to peace out before 5pm and I left without notifying anyone.

So in short, West Boca Eye Institute will no longer be my clinic of choice and my next appointment is on June 3rd at a new, presumably better place. 

Which is good because on Saturday night, for the first time, I was unable to drive myself to my destination because my sight was so poor and the lights were too bright.

I got half way to the local Barnes and Noble, flipped out in a mall parking lot, made it home, collapsed into a puddle of rage-filled tears, and officially can no longer drive at night.

I can deal with pain, needles every day, medications that make my face look like that of a chipmunk. I can even deal with the 4am prednisone cravings for brownies and my skin looking perpetually sunburnt,

but I cannot deal with autoimmune in my eyes or losing the independence of driving at night.

On that note, please keep your fingers crossed that whatever is going on with my vision is not uveitis or brain-related, and can be easily resolved with contact lenses.

Do any of you deal with blurry vision or related symptoms with your autoimmune or autoinflammatory diseases?

Blog Break: Infection of the Year

So I have pneumonia and a sinus infection because that bacteria/fluid I had in my lung two weeks ago? Yeah, it came roaring back (thanks, immunosuppressants) and invaded not just my chest, but now my face. I am so, so, so sick and my airways are covered in lovely, green, cement-like mucous (no such thing as TMI here in the chronic illness world).

And so all posts are delayed until further notice, including HAWMC :( Sorry guys. I’m behind on messages too.

I have a really, really, really huge announcement when I am feeling better and up to writing about it. If you follow me on Twitter you already know what I’m talking about.. I can’t wait to share this incredible upcoming journey. 

Keep Your Head Up: It’s Not Always Pretty

I have reached the point in the semester where the bottom falls out and my health kicks my ass into the ground.

Things are so hard right now. The stress level is too high. So high that I had an anxiety attack in my sleep/dream and woke up in the midst of it (uh, who knew that could even happen?)

I am just scrambling to keep it together, and I’m not alone.

You know how we do. So much of our energy goes into just keeping it together, getting through the day. Stiff upper lip. We push on. We fight. We smile even when it’s killing us.

We are bombarded with people telling us to be positive. Bombarded with unsolicited advice from others who, while they may have loving intentions, just don’t understand.

We are bombarded with messages from society telling us that disease means we should either be cured or die, not stay stuck in limbo for years on end.

We are given messages that tears are a sign of weakness, that we have to be positive, positive, positive and never let the disease define you.

Well guess what? There are days where this incurable and disabling disease is going to wear you like a coat. And it’s going to knock you on your ass. And all those people telling you to be positive, you’re going to want to kick them in the shin. But that’s normal, that’s okay.

This is your monthly reminder that it’s okay to let the build up come out. It’s okay to cry. It’s okay to break down. It’s okay to be furious that these are the cards you’ve been dealt. It’s okay to be angry with the world that every day is so. unbelievably. difficult. And it’s okay to talk about it.

It’s okay to be open about your struggling, to let others know you’re struggling with them. This disease is ugly, it’s raw, and it can bring you to your knees time and time again. There is no shame in that.

It’s okay if a wave catches you off guard. It’s okay to stop treading water for a little while if you need to and just float for a bit. Just remember there are better days ahead. There are going to be roses in the garden to smell again.

That’s what being positive is about. It’s not about being happy all the damn time. It’s not about making these diseases palatable for others to read about or watch. It’s not about being an inspiration for others all the time. It’s not just smiling through pain. Being positive means having these days, experiencing them in a healthy way, and being able to hold onto hope until you see the light again.

Keep your head up.

Losing the Battle, but Winning the War: Kineret, Flares, and Kind Words


Had a really rough week, facial (trigeminal) nerve pain flared, Endometriosis flared, rheum flared even more— some of the worst pain I’ve ever had. So when a friend offered me a ride home for a long weekend, I knew I wanted to be home with people to take care of basic tasks since I sensed the impending chaos.

Came home yesterday and chaos hit. Big shakes and chills, glands are so swollen all over, throat is inflamed and swollen, rashes, fever, GI symptoms, headache that is threatening to turn into a migraine, major joint pain/swelling, a painful spleen, swollen/painful eyes, pain with breathing, muscle spasms/pain— the works x8723. 

Rheumatologist is out of town so a steroid shot or IV steroids are out of the question unless I head to the ER, which I really don’t want to do unless my fever shoots about 102. 

My ESR dropped, but my CRP (which was already high) jumped a lot. It’s really hard to struggle the way I have for the past week or so while on a medication that was showing promise with confusing labs. Up until last week, I hadn’t had nightly fevers or rashes for a month. 

Even though I’m about as sick as I can get without reaching emergent status, I have to believe Kineret still has a good chance. It can take a full 6 months to see complete effects. 

I can’t give up. Can’t quit. Can’t get defeated. It’s so hard to keep your head above water when you’re swimming upstream. I desperately hope that Kineret (or any biologic medication, really) will be my life-raft  but for now, hope (and the people in my life who feed that hope) is what’s keeping me afloat.

So I’m losing the current battle, but I plan on winning the war. And doing it with a smile:

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  • If you’ve sent me an inbox message or email in the past two weeks, I promise I will or already have read it and will respond to you! I read them all, but between exams and flare, I’m way behind.


Big love to everyone sending kind words. They are so, so, so incredibly appreciated when I’m feeling like this.


I’d love it if you would pay it forward and send some big love and kind words over to Team Payton (and anyone else you know of that might be struggling). It’s a rough patch for them right now and Payton is struggling after a GTube procedure, so check out the Caringbridge Site and let them know they have our community behind them.

Chronic Illness: when your bedside drawers turn into storage areas for your daily medications. Follow Chronic Curve on instagram
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Chronic Illness: when your bedside drawers turn into storage areas for your daily medications. Follow Chronic Curve on instagram

The only medical establishment that makes me feel warm and welcome when I am there. It’s like visiting family friends, not doctors and nurses.

Dr. J is so much more than a spine surgeon; he coordinates every aspect of my care. When I can’t find a specialist that suits my situation, he  personally calls up a colleague or two and gets me in to see the best, even if that means seeing a pediatric specialist (I am 21). I can express concerns about other physicians and he gives me an honest response and a sense of direction. I am so excited to intern at this hospital and shadow Dr. J this summer. He is a phenomenal physician and a caretaker in every sense of the word.

Was told much of the excruciating nerve pain in my hips and legs is from something called bilateral meralgia paraesthetica, caused by swelling and inflammation in my joints from disease activity.

Next stop: nerve blocks and injections.


So that’s fun.