On The Lupie Side Of The Street

Every couple of years I like to get a new travel mug. My beloved old one with penguins in a snow scene that is printed on a metallic background is getting cracked and leaky. As much as I hate to see it go, I also dislike pouring hot tea on myself on accident. Luckily the great breaking of the travel mug coincided with a holiday that I know and love, Christmas. For the past few months, I've been lusting after a particular travel mug found at most Starbucks locations. Being in the land of the unemployed made the mug seem just out of reach for me. I felt like it wasn't meant to be for me but maybe for someone else?

In sub-Saharan Africa, 22 million people live with HIV. 22 million people, can you even begin to think about that number in your head? It's huge, it's mind boggling, but it isn't just a number. Each number stands for a person, a person with a heart who is holding onto their last bit of hope. They don't have the resources like we have to go to a hospital, to get medication, to stay alive for another day. I understand that our health care system is currently in shambles, but what the people in Africa are enduring is far worse.

I made the decision this evening that the travel mug that would make me the happiest would be the Product (RED) travel mug from Starbucks. I understand that only $1 US dollar goes towards fighting AIDS in Africa, but it is better than nothing. For 40 cents a day, two antiretroviral pills can be provided to a person living with HIV. In reality, my travel mug provided two and a half days worth of treatment for one person living with HIV. Two and a half days, big deal right? Well think about all of the other Product (RED) items that are being purchased around the world? Those dollars add up, they can provide a person with an extra day of a healthy life. Being chronically ill, I understand the importance of having one day when I feel completely healthy. I cannot imagine the pain and suffering a person endures while living with HIV, especially not in Africa.

My contribution may be small to this global effort, but I made a conscious effort. I decided that I could purchase any travel mug in a certain price range, but I chose to purchase this mug. I know my donation from my mug will not bring an immediate end to the AIDS crisis around the world. But I hope that with my tiny donation, it will help to keep one person alive for two and a half days. I hope that other people's purchases will help to keep that one person, but other people alive for many more days. Maybe, just maybe, one of those people will be able to come up with an idea, changing the rules of this cruel game, and maybe save the world from this global epidemic.

I may not be saving the world, but I could be saving the one person who could save the world.

Last night I had a great conversation with my friend on the telephone. I was laying in bed, frustrated about how I felt, and how most people don't understand. When I look completely healthy and radiant, it doesn't mean that I am. It's hard enough for most of the general population to understand an auto immune disorder such as lupus. But it's even harder when most days when the person, such as me, doesn't even look sick. I tried to explain to my friend whom I'll refer to as M&M, what it really means when I tell her how I feel. When I say I feel "OK" for a healthy person it would be their version of a sick day. If I were to say "I feel sick today" for the average person, it would mean they would feel like death warmed over. Occasionally I mutter the words "I feel like death warmed over." A healthy person would have been six feet under for six months at that point.

99.9% of the time, I tell people I feel "OK." Why? Because no one wants to hear my sob story about how my joints hurt, my muscles ache, and my organs are burning. No one wants to hear about how exhausted I am but I can't sleep. Don't even get me started on everything else that is wrong. A sob story is only good for one time and I had to use mine up a long time ago. Plus if you say anything other than "I feel OK" you get asked a lot of questions. There is nothing else in the world that bothers me more than a nosy person. Most people don't ask questions because they care. They ask because they want the inside scoop, they are curious about my health, and not in the right ways. So there are lots of people on this earth, people I work with, people I go to church with, friends, family, who all think I'm "OK."

Maybe it's because I feel like I don't have a right to complain? My life could be a heck of a lot worse, it has been a heck of a lot worse. I consider what I'm going through right now as an upswing. Sad but true. If I say "I'm OK" I'm not complaining but I'm not really telling the whole truth either. There is no easy way to explain how you feel when you have lupus. There is no way to force people to understand either. Some days I don't even understand how I feel. I can go from being somewhat OK to being sicker than a three legged broke neck dog in a matter of minutes. But I don't have the right to complain, I'm healthier than I have been. There are sicker, sadder, poorer, and more alone people in this world than me. I'm lucky.

My friend M&M came up with an absolutely brilliant idea last night. I should start wearing a mood ring, it would make this whole business of telling people how I feel much easier. I wouldn't have to go through the explanations of how I'm feeling and how lupus is affecting me. I wouldn't be lying either because the color on the ring would say it all. Someone could say "How are you feeling today?" Being the amazing person that I am, I could look down at my mood ring and say "Actually, I'm feeling quite purple today." Of course I would get an odd look and a "What does that mean?" I could say "It means just that, I feel purple today." See, I'm not lying because I'm saying exactly how I feel because the mood ring is supposed to know exactly how I'm feeling.

I know it sounds goofy and odd but when you are faced with a disease that doctors have a hard time understanding, you need that sort of fun. When you have to answer the same questions and lie through your teeth because no one likes a sob story, it's time for a fresh new idea. Sometimes the only way I can get through living with this disease is by being quirky. So if wearing a mood ring will make M&M and I laugh, if it will make people puzzled, then that is what matters. Life is too short not to laugh, not to make memories with those you love. Life is too short not to find happiness in the little things. Life is too short not to be honest.

So if I say "I feel purple today" you might want to back up a few steps for the sake of your shoes.

I am quite possibly one of the biggest Christmas fanatics you could ever meet. I'm the type who starts looking forward to Christmas in October. I'm one of those people who puts up the Christmas tree and decorations on Thanksgiving day. I love Christmas music and I listen to the local radio station that plays it constantly through Christmas day beginning on Thanksgiving. I enjoy Christmas crafts, like making my candy cane reindeer. I love to hand craft the Christmas presents for my friends and family. Christmas for me evokes so many wonderful feelings that fill me with joy.

For me though, Christmas isn't really about the anticipation, decorations, music, crafts, and presents. Christmas has such a deeper meaning to me, for me Christmas is about hope. Christmas gives me a sense of hope that I try to carry with me all year long. I hope for Christmas when I feel like I am trapped in my body of sickness. I hope for Christmas when I feel that nothing in my life is going right. I hope for Christmas when I need my heart to be filled with joy right at that exact moment. The thought of Christmas has carried me through many horrible times that I probably wouldn't have survived without my Christmas hope.

This year the only present I truly want is the gift of having enough hope to last me until next Christmas. I need hope to carry me through the rest of the winter when I tend to get my sickest. I need hope to carry me through the spring when I am looking for a sense of renewal in my life. I need hope in the summer to give me the energy to enjoy the extra time I get to spend with friends and family. I need hope in the autumn in order to truly appreciate the beautiful colors that the fall foliage brings. I especially need hope at Christmas, hope that the excitement for it will never fade year after year. Christmas is the one time of year where I truly get excited about life. I'm thrilled that it is finally my favorite time of year. I'm ecstatic that because of all the hope I am filled with I feel the amazing feeling of joy.

So instead of coming up with a Christmas list a mile long, try to think of the one thing that is going to carry you throughout the year. What is the one thing you absolutely cannot live without? I'm fairly certain it's not going to be a flat screen television, a Blu-Ray DVD player, or a video game console. I'm pretty sure that it is going to be something that is felt in your heart, that is unique to you, and you need it more than you think. Let that one thing carry you along through the year, comfort your soul in hard times, bring peace to your life always, and let it fill your heart with joy forever.

Happy Holidays to all of my blog readers!