“Being happy doesn’t mean that everything is perfect. It means that you’ve decided to look beyond the imperfections.” – Louise Hay
It’s not easy to have a full time career with a chronic disease like Lupus. It’s the kind of thing that changes from day to day… a few days are good and you’re functioning well, and then a few days you’re down… tired out and in pain. There are lots of reasons why Lupus can debilitate you… bloody skin rashes, seizures, chronic infections, crippling arthritis, lung inflammation, kidney failure…. It’s just not an easy disease to live with. And there’s no easy or straight forward treatment. It seems that different drugs work in different ways for different people. I might have more inflammation in my brain which causes seizures, another patient might be in kidney failure, someone else might have a bloody rash covering their whole body… it’s a hard disease to treat and it’s a brave doctor who decides to take on the disease and try and help it’s victims lead tolerable lives. Lupus is a fatal disease, and each of us has to accept that eventually we will die from it. So working full time, or pursuing a career is not always easy. Some of us only work part-time, some of us can’t work at all.
I was a teenager when I was first diagnosed, and I spent a lot of time planning a career I could live with as a disabled person, but that’s not always the case for everyone. Some of you may not have been diagnosed until you were an adult, and had finished job training or spent a lot of money of education and were pursuing a career. Maybe you were unable to keep working once the disease set in, or you had to change jobs to find something you were better suited to. Maybe you can’t work at all and the student loan sharks are at your door right now. When I was in high school I wanted to be a doctor. I studied hard and got good grades, but when I was 18 I had a Lupus related stroke which damaged the left occipital lobe of my brain where math skills are located. I went from having a mastery of college calculus, which is a necessity in a pre-med program, to having the math abilities of a 6th grader. But brain damage is permanent, and the math skills have never come back, nor has my ability to play the piano, which I lost from that stroke as well. I was devastated, and when I went to college I had to take another major. I studied art and music, and fortunately I have made a living working as a jazz vocalist and as a graphic artist, but I am sure I would have made a lot more money as a doctor. The disease made me change the way I pursued my goals and dreams. Has it done this to you?
I’m in my early 40’s now, and the disease is progressing, but I am very thankful for each day that I can work. I am currently singing monthly in Chicago, and I am also working as an artist and illustrator, but I only do this part time. Because of the disease I have to spend a lot of time resting, and I follow a careful homeopathic regimen to keep my symptoms under control. If I’m not careful with myself, I can easily fall into a flare, so I am not able to work full time anywhere, and this is hard to accept. It’s also very hard on my finances. I am also unable to do as much work as I’d like. I wish I could be traveling and touring as a singer, but I have developed allergies to things like Febreeze and carpet fresh, which you find in great quantities in any hotel room. I break out in a bloody rash if I sleep in sheets that are perfumed or have been cleaned with fabric softener, so it’s not easy, or cheap to travel and stay in hotels. My soul wants to tour and perform in different cities and countries, and I’ve had the offers to do this, but my body just isn’t ready for a fast paced life of travel. So I am content to work the jobs I get in Chicago, and I am grateful that I can do at least that. Sometimes that’s even more than I can handle, depending on if I’m in flare or not. I know a few Lupus patients who are in wheel chairs and I feel pretty darn lucky I’m as healthy and as mobile as I am, so I’m not complaining. Still it’s hard to accept a disease that keeps you from working or pursuing a dream. It’s no party living with chronic illness, and it’ can be devastating to accept the consequences, emotionally and financially. But if you look around, especially on a hospital ward, you will see a lot of people who might have it worse than you do. One of my best friends in high school had several brain tumors and died before she was 25. She had several operations on her brain from age 15-24, but the tumors kept growing. I’m 44 and still alive, and I thank God for every day that I have. It’s hard sometimes to accept life with a chronic disease and to be grateful for the good things that we have, even if our dreams are larger. If you live with Lupus or a chronic disease, how have you had to change your life, or manage or re-evaluate your dreams?
Dear Solitaire,
I understand , I have Fibromyalgia. and I bet you get allot of what I get. People think you look fine so they think you should be able to do everything and be very energetic. I too am allergic to allot of cleaners and perfume etc. It’s very hard for me as my Mother and Brother think I am lazy and get angry I am fat. I am glad you can talk about your lupus and help others. I recall a nice women in my church who had lupus back in the early 80s and the people in our church just didn’t get it they were always pushing her to join this and that and being really rude to her when she said no. I never forgot that. You are so gracious and talented. Thank you for sharing your experiences.
Love, Beth
Hey Beth, I’m sorry to hear about your Fibro, but I am glad that you are finding a way to deal with it. When I started reacting to stuff, like fabric softener, it took a little while to figure it out. I went to a dermatologist who did skin patch testing, and she was the one who suggested I stop using dryer sheets and the like. I just never even thought about it until then, you know? I just kept wondering why I was getting all the rashes.
Having an auto-immune disease takes constant monitoring… which healthy people don’t always need to do, and we have to be extra-vigilant to be responsible with our health, or else we’ll just be walking around in misery all of the time. I was on steroids for a long time trying to clear up the rashes and the symptoms and I got really fat too. People have no idea sometimes, and when family members criticize you it’s very painful, because you’re suffering and they are being shallow and only looking at your outside, and they have no idea how much you’re suffering on the inside. And their cruelty is hard to live with, in addition to the physical pain of dealing with the disease. Little do they know what it feels like. The thing about Lupus is if you aren’t having a bloody rash, nobody knows what’s wrong with you because you can’t see it, like you’re not usually in a wheel chair, you know? I am sure that you go through the same thing with fibro.
Hi… I really needed to read this today. I was diagnosed with lupus about ten years ago, and it hasn’t been easy! I’ve accomplished things during that time, but at a different pace than what I had expected. Right now I’m in the never ending process of readjusting my thoughts and expectations because I tend to be too hard on myself. I just want to be able to do things… but most of the time get overwhelmed and confused. Then I just become paralyzed, unable to accomplish the simplest chores at home, taking care of my child and home. It is really frustrating. I also have gained 120 pounds since my diagnosis, can’t stop eating, always tired and/or in pain… I think I should stop complaining for a bit… but thanks for the opportunity to let it all out.
Thank you for taking the time to reply, I’m glad that my post might have helped you a little. It’s harder to accomplish everyday things sometimes when living with a chronic disease like Lupus. It’s hard to live with the disease and it’s unexpected swings, let alone the disappointment of falling short of your goals. Sometimes we just have to say, “Ok, I can do that, but it might take me another day to get it done.” and there’s nothing you can do because your body puts the brakes on. It’s hard when we disappoint loved ones because, but it’s worse when we disappoint ourselves. That’s why I started this blog, so that we can share our experiences….
If I told you that I couldn’t make it to the gym today because I fell on the ice and broke my leg you wouldn’t blame me, right? But if I told you that I couldn’t make it to work or to a family member’s birthday party because I was sick, running a fever and breaking out in a bloody rash and experiencing intense joint pain… well, those things typically happen with Lupus and since we don’t look like we’re suffering and in intense pain, so people think we’re just making excuses… but we’re not. It’s heart breaking.
I work out at the gym 5 days a week, 2 hours a day now that I’m in remission, but since I am still taking steroids I am a size 12. I used to be a size 4 and people think that I just sit around eating candy bars all day and I eat a 900 calorie a day diet…. but when you tell them, “I’m on steroids” they just don’t get it. I do have a great set of biceps tho…
I’m glad that you posted today, it has helped me to hear your story. There isn’t a Lupus support group in the area where I live, and we need to be there for each other. Thank you.
well i must agree those biceps are super, so are those vocal chords, and that figure..forget about it, the wolf aint touch the woman