Imagine you're at a wedding. You're trying with all your might to look fashionable, and carrying one of those cute, small purses that's so feminine and goes so nicely with your dress. But in the ladies room, when you open that small purse, a hail storm of medications fly into the air and then spill onto the floor. It feels like there are little pills flying everywhere…
Yes, you guessed it. This girl was me. And I was mortified! I knew next time I needed a bigger bag!
What was the lesson here? I tried so hard to be like everyone else, and forgot that I am not like everyone else. I have lupus. I needed to stop hiding my medications and start working with them, so I could make them a more simplified part of my life.
Now, I am friends with my pharmacist. She knows me and my family by name. I always go to the same pharmacy, so that all my prescriptions go through one system. I now use a 4-times-a-day weekly pill case, and it is huge. Does it make me feel like an old lady? Yes! But it does the job, and now I take my medications on time and with ease. I fill the case just once a week, and the rest of the week I know that everything in there is correct.
How do you organize and carry around your medications? Do you use pill cases, or do you take medication straight from the bottle? Do you have any tips or tricks to share for better organization?View Thread
We all want to look our best, even when we might not be feeling well. I think it's a universal desire, not just for people who live with lupus. When you add lupus to the appearance mix, it gets harder to look your best. I have days when I look in the mirror and I can't believe the girl looking back is me.
People living with lupus have to deal with many things that affect our looks, including weight gain from steroids, or weight loss from other treatments. Hair loss, moon face, and sometimes a pale complexion from having to avoid the sun are some of the appearance issues for people with lupus. I bruise easily, and I always have dark circles under my eyes from not sleeping. Of course, I can't forget the lupus butterfly rash than can appear across the face. These are just a few lupus symptoms and treatment side effects that affect our looks.
During my life with lupus, I've lost all my hair twice. I know how devastating it can be. To feel better and to try to look my best, I've worn hats, wigs, hair extensions and different haircuts. I've also gotten much better at putting on makeup to cover dark circles, rash or a pale facial complexion. I've found that practice makes perfect when it comes to hair and make-up techniques. A fun idea is to invite your friends over for a "girlie make-up party" to share tips and to get advice.
What are some ways you've learned to camouflage the appearance effects of lupus, to help make you feel and look fabulous?View Thread
Sometimes when I think of a lupus remission, I feel like I'm Dorothy in the Wizard of Oz, searching for a magical place, like the Emerald City. I wish I could just click my heels three times and get what I want. However, after living 18 years with lupus, I know remission is a much harder place to get to. Is it only in my dreams?
At the beginning of my life with lupus, I searched and hunted for the elusive lupus remission and did everything possible to achieve it. Yet, when I did feel better I wasn't satisfied because I wasn't perfect. I still had to take medicine and take care of myself. I was still low on energy and still had some pain. I wanted to be cured. We all know that there is no cure for lupus. But at the time, I associated remission with being "fixed." Now I would trade any day for one of those early days of feeling better. I guess you don't appreciate what you have until it's gone.
Later in my life, as my disease progressed and complications arose, I changed my thoughts of remission to "just feeling better". I redefined my expectations to being able to live my life, to feeling better, and not having active disease. These goals sounded more reasonable and more attainable.
Looking back, I think I've had years of what I define as remission. I've had great years that required less medication, no appearance of lupus complications, and a high-functioning life. I appreciate the year before and during my pregnancy, when I was healthy enough to have a child. I have a whole new appreciation for good days, and I'm not necessarily hunting for the perfect remission. I no longer see my doctor as the wizard who can grant my wishes, but instead, as a team member to keep me as healthy as my body will allow.
How do you define remission for yourself? Have you been in remission or are you currently in remission?View Thread
Melissa, Thank you for coming over here and joining me. I am so touched that my speaking helped you. I always say that if I can reach just one person that I feel I have done my job. You just filled my heart. <3View Thread
Lisa, You are so great.. Like the host of this party.
I am exhausted I was traveling for work and now I am beat. I kinda knew I was pushing myself and kind of expected a "crash" so this week I am laying low, restin and getting caught up with things around the house.
Redwing, I feel the same way with my daughter.. will I take her to the beach, will I be able to watch soccer games in the sun. I think many mothers who have lupus will probably feel better reading your response like I did... it helps to know we are not alone.View Thread