Posted by: hockeygrl1 | March 11, 2011

What is remission?

That’s a big question in my world right now. My doctor keeps talking about this thing called remission for my lupus and I keep wondering what it will be like. I was hoping it would be like in cancer I guess. You know, in remission for 5 years and you’re cured! Woo Hoo! Have a party.

My doctor knew right away what I was really asking. It was, “Will I ever feel better, you know, normal?” She’s smart and knows me and lucky for me is totally honest. She didn’t sugar coat it; I guess that’s what I needed for it to sink in. (Maybe she should do this to my family)

Nope, there is no such thing for lupus. There will always be a bunch of pills and I will always be exhausted.

Remission, in lupus,  means there will be no added harm to my organs or systems. That’s all it means. How long will this remission last (If it ever happens)? No one really knows. I’m guessing there’s not a lot of information on this because google, which is my best friend, isn’t bringing up any good data. It’s one of the things I’ve gotten used to with this illness, no black and white answers. It’s always the gray area. “Some people do go 5 years in remission, but some don’t make it a year.” Well, some people what their life back!!

I don’t want to live with the feeling of my whole body being full of lead and not being able to keep my eyes open. I want to spend my days outside gardening in the sunshine not worrying about whether or not I put sunscreen on. (By the way, I need to buy sweat proof sunscreen from now on. Crying gets it in your eyes and it burns) I’d love to go for a hike and not worry about if I’m going to have the energy to make it home or schedule anything 3 weeks out and know I’m going to be able to do it.

Work seems so far away. How can I work when I can’t make it through a day without a nap? Just thinking about getting ready for work makes me tired and the drive will drive me nuts. I know I’d need a stress free office job close to Becker because a long commute is out of the question. Is there such a thing? Who knows. All I know is that if I work, I’ll have to make and freeze all our dinners on a day off because there will be no energy left to cook. I’d need all kinds of help then. Cleaning wouldn’t get done and poor Bella wouldn’t get to play with me.

What news to get on a day when I’m all excited because lupus is in the news. There’s a new drug! First one in 50 years! But….. It will take at least 3 more months until it’s available to me and there’s no guarantee it’ll work. At least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus. So many people suffering, but no medication to make it better. You don’t die, but you feel like shit. No one understands how you feel other than your doctor and others that are suffering with lupus or a related illnesses.

You don’t know how cruel the words “you may need to suck it up and try to be normal” are until you have an illness and need to deal with it. Any movement makes me tired so the thought of getting up 5 days a week and making myself cute to go to a job scares me. I know that healthy people don’t really believe that. They’re thinking, “How can taking a shower or putting make-up on wear you out?” It can. It takes movement, movement takes energy and energy is one thing I don’t have.

So for now we can only treat my lupus with prednisone. There are no other options at this time. No drug to make me feel better, no magic pill, no magic spell….

Am I angry? Hell yes! I can’t understand how in this day of great medical advances, there is not a drug that can treat my illness. No one knows what causes it or the fatigue and there are some ways of treating it, but not so it will go away. There’s no way to cure it. You can’t just take a tumor out or get chemo for a time and it shrinks or goes away. There may not be a lot of deaths from lupus, but that doesn’t mean that we don’t suffer. Many people don’t even know that the purple ribbon stands for lupus (as well as 25 other causes). Wouldn’t it be nice if it was as known as the red ribbon for AIDS or the pink ribbon for breast cancer? Maybe some day that will happen. Maybe me and my lupus/spoonie friends can make it happen.

So until there is a cure, I’m going to work with my doctor to try to find ‘normal’ again. I’m going to get the treadmill from Brenda and start walking on it daily. It may be all I do every day for a while, but it will increase my strength and endurance. If it’s in my house, I can just stop when I feel tired and crash on the couch. If I’m walking in the woods or on the road, I may over do it getting back to the house and that will mean 2 more days recovering. Lupus is like that. Over do it and you will pay.

I’ve got 2 books on lupus on the way and I think I’m going to save up for some of the medical text books on lupus. The more I know, right…

I’m not going to roll over and play dead. When have you ever known me to do that. I’m motivated, driven, competitive and smart . I can’t let this all go to waste. I need to find a way to get the word out, to get and keep lupus in the news, to get funding for a new medication or cure, so we can all beat this disease.

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