the invisible handicap and parking ‘shaming’

handicap parkingThere was an article recently of a woman who has lupus, which makes her eligible to apply for a handicap parking tag/spot. She received a nasty letter on her windshield from someone who, thinking they were a good citizen, shamed her for stealing handicap spots from people who need them. The woman who received this note and her mother were good-natured about the situation and  took the opportunity to educate people about lupus and why it is important not to judge people who may not look sick, but really are!

When I applied for and received my handicap parking tag, I worried about what people would think about me putting my tag up and walking into the grocery store. I’ve even set myself up for failure when I wasn’t feeling well, but wanted to ‘save space’ and ‘save face’ by not using my tag. I’d been in pain and exhausted and fully aware that my short grocery trip might end with me unable to walk, but, for pride or fear (or both), I didn’t use my tag. I suffered for it. I barely made it to my car. I needed to be able to sit down. Pushing the cart was hard enough, but to keep pushing and not be any where near a place to sit made me realise that I had the tag for a reason and that I should use it regardless of what people might think.

When I am well, I don’t use my tag. Perhaps there is another lupus patient who needs the spot that day, but I always remind myself that I have it for a reason and that I should use it.

So, if you have lupus, or another invisible disease, apply for a handicap tag if you think you need it. And if you have it and need it, use it.

Giving Benlysta a chance

IV bagI got my Benlysta infusion this week. I’ve been on it for about three years and it’s been working out really well for me.

What made me excited this week is there were two other people receiving the treatment in the infusion room with me. It’s exciting because we’re getting more doctors to prescribe and more patients to take the only drug on the market right now to specifically treat lupus. With more people on it, we can get more information about how it affects us. The more information we have on how it effects us, the more confidence doctors and patients can have when weighing the decision to begin the treatment. We’ll also be able to get more studies about Benlysta and that can lead to new discoveries of treatments that might help…or even cure us!!

One of the women said she is on her 6th dose (including the loading doses). She hasn’t seen an effect yet, but I told her it took me about 6 months to see the benefit. I hope this will encourage her to stay on a little bit longer. Everyone with lupus is different so I don’t know if it will work for her (or other lupus patients) but I hope she is not too down on it just yet.

sometimes you need to slow down to move fast

NYC blurI tend to walk fast. Maybe it is part of my ‘location DNA’ but even when I can’t move fast, I try.

I’m a big-city girl, having grown up in Brooklyn NY, and I can’t imagine living anywhere else. Coming from NYC, everything moves fast. It really does. I rarely notice it unless I’m somewhere else and get frustrated that everyone is “so slow”.

Having lupus and having this need for speed can be a challenging combination. When I am forced to move slow because I am in a flare…it drives me nuts.

I’m getting out of a flare now. For weeks I haven’t been able to help but move slowly and it’s been so frustrating. Even while knowing that I can’t move any faster (because it is actually, physically impossible) and that I should move slowly so that I can recover, every fiber in my being wants to just GO. My inner voice, the rational, smart one, tells me it’s no big deal: “Slow down, what’s the rush?” “Don’t you want to feel better?” “At least you’re mobile.”So what do I do as soon as the prednisone kicks in and I get freedom?!…you guessed it, I’m racing again. I really can’t help myself sometimes. I weave in and out around people and keep a NYC pace as if someone were timing me from the train to the office or something.

I have to constantly remind myself that I am not over the flare and I can even feel my body start to force me to slow down with the swelling and pains. I just have to realise that in order for me to get back my natural pace (fast) I need to “slow the heck down!!!!”