Wednesday, April 27, 2011

Awareness Month

All diseases deserve awareness, even Lupus. I’m not talking about the bad type of awareness from T.V. shows that say “It’s never Lupus.” But genuine awareness, the kind that educates people about what Lupus is and how it affects the lives of those who live with this debilitating disease. One thing awareness should never be is cramming information down people’s throats. This past October I felt like I was over trodden by breast cancer awareness. Now, I’m not here to bash on breast cancer (I have many people I know who have had it) or awareness for breast cancer. Breast cancer deserves awareness just as much as Lupus. What I am going to preach on is the methods used for spreading awareness.

First, awareness doesn’t have to be crazy. Men hang gliding around with thousands of bras tacked onto them is a little well… crazy. Turning almost everything a consumer can purchase for a month pink, a little crazy. Pink is my favorite color too. To give an example: even my chicken feed I bought came in a pink bag. Yes people, you heard me a pink bag. Now, one might ask: “would you feel the same way if it were lupus awareness and not breast cancer awareness?” My answer: “yes!” I too would be sick of purple just like pink if the only grocery bags I could buy were purple, only pens I could find on sale were purple, only chicken feed I could find was purple, watching cooking shows, football, the news, and seeing purple. Even just turning on the radio for a little music enjoyment and being bombarded with Lupus awareness advertisements. Lupus awareness month was actually moved from October to May because breast cancer dominated the awareness stage so much. But let me repeat again, I have NOTHING against breast cancer awareness. I have problems with some of the levels of promoting awareness for breast cancer. There’s a fine line between awareness and over doing it.

Second, quietly spreading awareness is good. Some of the easiest and best ways of spreading awareness are not through painting the world a different color or using every single media outlet to shout out for the cause. People who wear bracelets, T-shirts, car magnets or even nothing but normal clothes are some of the best people at spreading awareness. Sometimes illness will come up in a conversation, other times people will ask me about my lovely purple scarf and a few times I have been approached about my car magnet. All of these methods of awareness are very simple, easy and gentle. I know a few people who have used these tactics with their illness and have had great success. One of the key things about spreading awareness as a Lupus patient myself is I have to be open about things. I can’t just be like “well… ummm… Lupus is this one disease and it really sucks and… you’ll never understand.” Great example of going nowhere with awareness.

Third, having one day to go all out is fine. On May 10th 2011, it is national Lupus awareness day. Everyone I know I ask them to wear purple. One day out of the year to go all out for Lupus. On breast cancer awareness day, all the more power to them! Just not every day for an entire month…

Fourth, all illnesses deserve recognition and respect. There’s not really much more to say.

My request for awareness month is people wear purple on May 10th 2011. On May 10th (or if you forget, any other day will do) please tell one other person you know about Lupus. The person cannot be me because I already know about Lupus. Share your story, a friend’s story or just talk a little bit about it if health happens to come up in a conversation. I have basically been from the start very open about my illness. Please do not hesitate to ask me questions if you would like. I will answer any and all questions asked. However, please do not go screaming Lupus down hallways, forcing awareness on people who do not want to be bothered or hang glide around town with a bunch of bras (ooops… hee hee butterflies) tacked on to you. Those tactics will garner attention but are a little excessive.

I am excited for awareness month. On May 10th I will be purpling it up and I invite you to do the same. Spreading awareness one person at a time.

Friday, April 22, 2011

My Brother

He can be a total butt sometimes. Of all the people I have ever been open to about my illness, my brother has been the hardest. He just doesn’t “get it.” A disability can be more than just a physical thing. Lupus not only ravages my body but also can cause mental issues. Bone crushing fatigue, brain fog and a host of other neurological issues rock me from day to day. But those aren’t symptoms visible to the human eye. So it’s hard to explain to him I really do experience these things and I’m not “just making them up for attention.” It’s not just “all in my head” either, I’m NOT physcosematic.

Funny my brother is so ignorant and blind considering he is openly gay. Many of his friends have HIV/AIDs or have died from complications of the disease. He has walked with them through their illness. You can’t just look at a person and say, “they have aids.” That would be like looking at a person and saying “they have lupus.” You generally cannot tell by just looking at someone (unless of course… the butterfly rash but in general…) if they have a chronic illness. People all over struggle with being accepted for being gay, having Lupus is no different. Some people think it’s a choice to have Lupus just like it is to be gay. Neither one is a choice.

Never has my brother had to deal with endless doctors appointments, injections, and brutally painful tests or blood draws lasting over an hour (we won’t go there.) Waking up every single morning feeling sick. Dealing with medication schedules, adjusted doses of powerful drugs and the many side effects of tinkering with said drugs. I can’t just magically switch bodies with him to give him the Lupus experience. I would if I could, then he would understand. My pain is visible only when my joints are warm, red and swollen. But yet, when one looks into my eyes they will see pain. Parts of me complain without me ever having to say a word. Generally I do not complain about every little ache and pain Lupus gives me. I find complaining to be a complete waste of my time because it doesn’t change anything.

Now have I sat down and tried to explain Lupus to him? Definitely. How did it go? Horribly. He fought me every single step of the way. “Well you’re taking medications for it, so you’re all better.” All I can say to this is the many medications I take do not equal a cure. There isn’t a cure. Do they help manage things a bit; yes they do. Even worse “the spoon theory is just bull shit.” Yes, he did actually say that to me. I was trying to explain my energy constraints to him and the Spoon Theory is the best way I have found to get the message across. My brother totally rejected it. In the end I was frustrated and hurt. My brother couldn’t even accept me being open and up front about my chronic illness. Something I will deal with for the rest of my life and could kill me.

Words can hurt, especially from loved ones. I try to be open about my illness not because I want sympathy. I am open because I want people to understand things and to not be left in the dark about what I go through with Lupus. If I could be healthy again, I totally would be. My brother has decided to shut himself off from the truth. He can think all the lies he wants to about Lupus. In the end though, it won’t do him an ounce of good. For what you don’t see can hurt you the most and it’s no different with Lupus.

TDLR; My brother doesn’t understand nor accept Lupus and doesn’t want to.

Sunday, April 10, 2011

Foot In Mouth Disease

Everyone has it. Sometimes people don’t even know when they say it. Other times it just slips out. Or the worst of all… they really mean it in a mean way. Let’s just say being chronically ill leads to a lot of discoveries. Foot In Mouth Disease being one of the most common.

I’m not just talking about the general “but you don’t look sick” or “you’re too young” stuff. No, I can handle that. I hear it ALL the time. Every person I meet who asks me about my health and desires an honest answer gives me those exact phrases. One of the first things I learned to cope with was how to respond to them politely. Over the years I have been conditioned to people’s ignorance, over-reaction and acceptance. Dealing with the simple phrases is a walk in the park for me.

Here is what I am talking about. A quote from my sister the other day “Well at least I don’t have Lupus so I can actually drive well and don’t need some one else in the car with me to be my second pair of eyes.” Yeah burn. The whole conversation in the car was one long put down. Classic case of FIMD. She may not have realized how powerful certain words strung together can be. However, based on how the conversation was going in the car on that particular day… I’m sure she knew exactly what she was saying.

Just today even, my Dad and I were in conversation about piano. He said “If you weren’t ill you would be an excellent piano player. But right now you aren’t. You can’t play very well because Lupus slows you down. I mean, you don’t play nearly as good as some of the other piano players your age.” First off I wanted to slap my Dad clear across the face in a very dramatic way. Second, I wanted to flip out on him. For crying out loud, I’m playing piano pieces with four clefs read at the same time and intricacies in every measure. I am playing far better now than I did two, four, six or even eight years ago. Every single day I practice for a half hour or maybe even an hour. My cool and calm response “Dad I enjoy piano and have my own set of expectations. I may never be “excellent” enough for your ears but to my own ears I am excellent. Not everyone can play as well as I do at this age. There are always going to be people who are better than me or worse than me. What really matters is I have a passion for piano and work with my talents.” Once again, a classic example of FIMD.

Now comes the inevitable question: “How much does Lupus really affect your abilities?” Hearing snarky comments from my own family about my apparent lack of abilities is not motivating. I don’t lack ability. Lupus does not control my talents, nor does it control me. Honestly I don’t understand why my family blames everything on my illness. I can’t play piano like a professional yet therefore “it’s all lupus’s fault.” Driving isn’t my expertise and I feel more comfortable with another person in the car “it’s all lupus’s fault.” You can’t blame everything on Lupus. Regardless of illness I feel I would still be at the exact same level of piano playing I am today. I work hard for what I want and I want to be spectacular in my eyes at piano. I’ve already achieved excellence but I will never be perfect. As for driving… I didn’t like driving before Lupus and with Lupus I still don’t like driving. Not much to say there.

Foot In Mouth Disease is a chronic illness everyone has. Sometimes FIMD sufferers can really challenge my cooling system. Respectfully and calmly replying to their asinine remarks without further fueling the ignorance/knowledgeable rage. I haven’t learned to cope with this yet. But in the grand scheme, nothing, not off putting remarks or Lupus can hold back my desire to use my abilities to their best in life.

Monday, April 4, 2011

The Prescription Refill Battle

Calling in for a prescription refill should be as easy as pie. Right? Well… apparently not. I really feel for people who have to call in for refills for opiods and other strong drugs. Learned the challenging way how some of my medications my pharmacy will not refill if called in correctly but are not approved for pediatric use (insurance company too.)

Saturday night I ran out of Peroxicam. It is used for treating both osteoarthritis and rheumatoid arthritis symptoms/pain. The dosage I am on (20 mg) is twice as high as is approved for a pediatric patient. So my insurance company flagged it and refused to cover it. Of course I did not know they would do that when I called in my prescription to the little automated voice thingy. I just did as it told me “press one and enter prescription number.”

Mom then ran to the pharmacy on Sunday morning to pick it up. That’s when she found out. So it took an hour of calling insurance through the pharmacy to get things straight and covered. But it was covered. Plus, the pharmacy only had five pills of Peroxicam in stock. They don’t generally carry the drug and even less at the 20 mg dose. So I have a short supply right now for my time at the ocean and hopefully upon return they will have my monthly supply.

I don’t run into this problem with my Hydroxychloroquine. We always order it by mail. Sometimes it is harder to get the meds one needs than it should be. But now I am aware of the roadblocks for the future!