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?

Live World Autoimmune Arthritis Day Chat in 30 Minutes!

The chat has been moved to the WAAD Facebook Page and will go up at 10am EST, as the live site has crashed! Come chat with me about all things self love and self esteem.

Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc. Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!
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Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.

Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!

Staying Positive With Chronic Disease


How do you stay so positive through your hard times?

Rebloggable by request after the question was posed here.

I started by redefining the word “positivity.” I used to think positivity meant obnoxious optimism and being happy all the time. I thought it meant not acknowledging the negative or being able to turn the negative off, so to speak. I thought it was something that some people just had, and either you had it or you didn’t— and I sure as hell didn’t.

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I was wrong. Staying positive requires hard work! Positivity (at least for me and my situation) is about being healthy mentally, making healthy and proactive choices when dealing with terribly unhealthy physical circumstances. It’s about taking the waves as they come. It’s about stopping to smell all of the roses in the garden and remembering that even when there are no roses to be found, they will bloom again. It’s about noticing and appreciating little things— finding a handicapped parking spot on campus, a good hair day. 

It’s about hope.

I don’t smile all the time. I am not happy all the time. I don’t love my situation and I’d be lying if I said I wouldn’t jump at the chance to live a “normal” life. And I don’t believe in shoving that kind of optimism in the face of my readers or sugarcoating these diseases because it’s just not real when your disease(s) cause the kind of symptoms many of us experience (sometimes that kind of optimism/positivity is, quite frankly, insulting and invalidating). But this is my life and it’s going to pass me by even if I spend the next 10 years being miserable, so I choose to redefine it.

And for the record, you don’t need a life changing disease to make the choice to see the world through a fresh pair of eyes. 

I surround myself with people who lift me up and make me laugh. It took a really long time to put together a support network that was the right fit and healthy, but it is imperative. 


Humor (often strange and inappropriate) and laughter are the best medicine. I try to laugh at myself and my situation as often as possible. It doesn’t make it any less of an awful disease or hand of cards, but it makes it easier to deal with.

I have friends who look at it the same way. Having friends who can make inappropriate jokes about my situation— being able to laugh at things like shitting my pants in the grocery store or being called a sloth, or at a rash that makes me look like a lobster— helps me remember that everyone has something.

So I laugh about it. I also cry when I need to and do not let anyone invalidate my tears. I get depressed. I get sad. I get angry. Some days I wake up and don’t choose positivity; some days, I choose to wallow. But even when my circumstances keep me down, I hold tight to perspective that there will be kinder days, and I will pull myself above water and go smell the roses again, even if it takes a little while. And it’s okay to use a life jacket if you can’t get your head above on your own. Ask for help.


To me, that’s what positivity is. It’s a choice I make to keep a healthy perspective and be proactive, even when I am at my lowest point. It’s a lens I see the world through. It is a way of life.

Come chat with me on May 19th-20th for World Autoimmune Arthritis Day! We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.
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Come chat with me on May 19th-20th for World Autoimmune Arthritis Day!

We’re talking all things self esteem, self perception, and self love with Autoimmune Arthritis and chronic pain. From Prednisone weight gain to lose of purpose and identity, let’s chat.

Memorial for Laura Kenyon, author of Still’s Life— May 10th, 2013

For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time. 

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially. 

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy. 

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?