World Lupus Day... Celebrate???

Today is May 10, 2012 World Lupus Day. I wish I could celebrate, I wish it was a day that meant good things instead of painful things. Eventually, this day will be a real celebration but until then I am afraid to even get excited about feeling a little bit better. Most of the time there are small reminders that Lupus is looming right around the corner, always. Then there are some days where it feels as if Lupus never even existed in my world. It feels as if I've gone back to the years before I got so terribly sick, before the days I couldn't even get out of bed, before the days when "I'm sorry I can't, I'm not feeling well" became a disappointing part of my conversations with almost everyone. There are days when I can walk around the neighborhood with my 5 year-old son and he gets tired before I do. There are nights that to be honest with you I barely remember because I was out with my husband doing the things that normal young couples do! But it seems like for every one day that I get to forget about having Lupus, I am charged with 2 or 3 days of being painfully reminded with every breath I take. Medication, ice packs, eye pillows, teas, pain patches, the T.E.N.S. unit and more are all things that I have in my "bag of tricks" to use during a hard "lupus day". That's what I say when I feel like lupus is just kicking my ass to any degree. Take the rainy week we had a few weeks ago. I was not expecting to be hit so hard when the barometric pressure changed as I have been doing slightly better than normal lupus-wise the last few months. But even as the barometer just began to move I could feel it in my bones. I woke up the next day and literally couldn't move. Lupus-1 Heather-0. It was terrible. I had been at a wedding the night before so I thought maybe I was just a little stiff from dancing in 5 inch heels. The next day when the weather proceeded to suck and so did my state of being, I knew that the dancing and the heels had little to deal with what was happening to me. I began collecting my lupus combating arsenal, that I mentioned above, and settled myself on the couch for however long it would take for the inflammation, joint pain and fatigue to leave me the hell alone. It took 5 days. I am not in any way exaggerating, I woke up on Thursday and didn't feel like my whole body was going to fall off and knew that lupus had loosened her grip on me. At least for the time being. Lupus-5 Heather-1.


In October 2011 I started infusions of the new Lupus medication Benlysta. After every infusion I feel a little bit more like my old self. Like I can maybe do things that I used to do! I say maybe because I used to be super athletic and played sports. I'm totally out of shape now so a few other things would have to happen before I could definitively say that I can do everything I used to do. Really the bottom line is that I can do MORE than I could before October, I have less joint pain, I can sleep and I don't need to take as much pain medicine. I think that's why I was so surprised by the full scale attack I received from my immune system a few weeks ago. I had been doing really well, well enough to be able to publicly talk about it and not thing I'm jinxing my progress or the drug's effectiveness. I feel that I need to talk about it and talk about it a lot because I have been hearing atrocious things about this medication and it is all from people that heard from someone who heard about someone. Listen, I'm on it and I know what's up. This is the score here Benlysta-8 Lupus-1. I give Lupus one point because she's a sneaky bitch and jumped me a couple weeks ago like I told you. I have spoken to a few different people and I get angry when I do because they are just not being properly educated about this medication that by all intents and purposes is working for me. Doctors need to do a better job of making this drug available and that means they need to learn more about it. I'm lucky b/c my rheumatologist is brilliant, some people don't have that. If you are reading this and you have Lupus I encourage you to talk to your doctor about Benlysta as soon as possible. Don't let anyone tell you anything about it unless they are on it, because if they aren't on it they don't know. If you have questions, ask me. If someone you talk to has questions or wants to argue about it tell them to come talk to me. I love a challenge.


One day we will be able to celebrate World Lupus Day in the real sense on the word. But for right now, let's celebrate by educating as many people as we can. We need to make this illness as well known and talked about as AIDS and Breast Cancer and until we do we won't have enough support or enough money to do what needs to be done to find a cure. At least that's how I feel. I am doing whatever I can to raise Lupus awareness, and I am trying to encourage my friends, family and followers on Twitter to do the same. We just have to keep talking about it, writing about it, singing about it. Keep it in the news, in books, on TV shows and put it in movies. Make it so that there's no way our world can ignore it! I am making a film called "What Do You Know About Lupus?" and I hope that will help in some way to get the word out. But until I can say that I have conquered Lupus, that I've kicked her ass instead of her kicking mine... I won't feel right celebrating. It almost feels like a challenge to Lupus and I don't want that kind of Karma. I'll celebrate when the score card shows we beat Lupus once and for all.


Faith, Hope & Love,
HG
(@PurpleTurtles33 on Twitter)

Maybe I'll Explain... a little.

I haven't really got the hang of regularly posting here. One of these days, I'll be able to make it something I do every other day. At this point I'm so turned around health-wise that I can hardly get a good night's sleep! I have Lupus, which I'm not sure I've even said on here before. And it has been taking over my life in the worst way. Right now, I'm even writing from my hospital room at Evanston Hospital. I have a condition called Pseudo Tumor Cerebri which causes my cerebral spinal fluid to build up in my head and cause terrible headaches. At this point I have to go to the hospital every 2-3 months for a spinal tap to relieve the pressure by draining fluid. My health problems can make my life pretty hard to deal with. One of these days I will give some time to fully explaining all of this and what it means for my life. Right now I just want to write some things that people want to read and I think a blog is a good way to do it. Maybe my friend will tell their friends (hint, hint) and tons of people will be reading what I've got to say? I don't know, but it doesn't seem as far fetched as it once did. I love the ides of someone reading something that I've written and asking me questions about it or leaving me comments. I'm excited to start telling more people about this. For a long time I have been scared, and now that the things I've written thus far are far enough in the past I won't be too freaked out to see what people have to say about them. I don't know if that made any sense at all... It did in my head. Hahaha! Well, this is going to be it for now, I'm getting tired and it's time for meds soon. I'm sure I'll get the urge to write about something soon enough. Maybe after I've slept.

xo Peace,

Heather

p.s. - I'd like for anyone who reads this to comment and either ask me a question, or give me an idea of something to write about. I think this might be a good way to really get started. Anything goes on here. It is what it is, after all!