I clearly remember the day I was diagnosed with lupus. I came home and called my sister. It was probably the only time I ever cried to her about my medical problems. I suffer from Acute Intermittent Porphyria and at the time the kids were going through a myriad of medical problems as well. My Lupus diagnosis was the straw that broke the proverbial camel’s back that day.
I flopped down on my bed and tears streamed down my face. “It’s just not fair!” I cried. “Why do we have to face so many medical problems? Why can’t we be normal and have normal problems?” Not knowing what to say, my sister just listened.
After crying for a while and feeling very sorry for myself, I decided that my medical problems were not going to hold me back. The diagnosis explained a lot but I decided I would push through the problems as I always had and just try to live my life with meaning and joy.
I succeeded… and I failed. While I continued to make the most of the joy I found in my everyday living, I thought I could ignore the fact that my body is attacking itself. I was wrong.
What many don’t know about Lupus is that it affects every aspect of your life. But, it is a tricky disease and affects everyone in different ways. I thought I would share with you some of the ways that Lupus affects my life. Perhaps knowing what I go through will help you to understand what your loved one may be going through.
When you have Lupus…
You are so tired. Every part of you longs to sleep… to rest. It’s not something you can control. When I am experiencing a flare there are times I need to sleep right now. I wish I could wait but I can’t. I have to lie down. During this time I could get 8-10 hours of sleep but 30 minutes after I am awake I am so physically tired that I can hardly function.
You are sensitive to light. The sun should be our friend and yet for those of us with Lupus, it can be our worst enemy. Too much sun will not only burn you but it can cause a flare as well. I slather on the highest grade sunscreen I can find, wear hats, don long sleeves when possible, and find shade whenever I can. I don’t swim much anymore, instead I stay on the shore under an umbrella trying to be present but not get sick. When I do swim I almost always wear shirts that can cover enough skin without making it too difficult to move in the water.
Along the lines of sunburn and sensitivity to light, I also sometimes have what they call the “butterfly rash” across my nose and cheeks. The malar rash makes me look like I have a sunburn and people ask me if I’ve been out in the sun. It’s a sure sign that I am in a flare.
I also suffer from discoid rashes. This is a relatively new symptom in my disease. I have suffered from small rashes for years but never put it together that they were from Lupus until they started happening in a very aggressive manner about a year and a half ago. Last winter and spring I had terrible rashes on my neck. I was so self-conscious about them because they were not in a place where I could hide them. At first they resembled hickeys and then they just got worse. I felt like I had the plague. It was embarrassing. They finally went away on my neck but then sprung up all over my body in other areas, particularly on my stomach and breasts. It takes steroid creams to keep them under control and from itching too bad. Sometimes the rashes are caused by exposure to sunlight, but most of the time they are a direct result of too much stress on my body.
Occasionally I will have problems with chest pain- particularly with costochondritis and pleurisy. When the pulmonary system becomes inflamed it causes a tremendous amount of pain within the chest cavity. Pleurisy causes the lungs to become inflamed and costochondritis causes inflammation in the rib cage and it feels like your chest is being torn apart. It can cause simple tenderness or it can hurt to breathe, to turn from side to side, or to simply move at all.
I have a list of other “little problems” that go along with Lupus- low-grade fever, swollen lymph nodes, dry eyes, and mouth sores. These sometimes go with a flare, sometimes not. However, even when I am not in a flare I always have a severely cracked tongue. Most of the time my tongue doesn’t bother me but when I am in a flare it hurts to eat.
For as long as I can remember I have had joint pain. As a little child my parents only took me once to have my joints looked at and evaluated. At that time it was mainly my knees that hurt. The doctor told my parents that I had Osgood-Schlatter disease. The problem with this was that soon it became more joints that were hurting. As I got older and stopped growing, the pain didn’t go away. Instead it got worse. When Mike and I were dating in high school we went to the movies almost every single weekend. We would sit in the dark theater and I would prop whichever leg was hurting the worst up on Mike’s lap. He would gently rub my knees for the entire movie. There were times walking hurt so badly. I suppose my choice of athletics- track- was not the best one for my joints, but I was thankful for a boyfriend who would massage them when they felt so terrible.
Today I still have joint pain. My knees are still the worst but often my shoulders or my elbows ache terribly. There are days that it hurts to lift my arms up or to hold my children. The joints will affect the muscles and then the pain is overwhelming. Of course I still push through the pain the best I can because the kids need me, but many days I simply wish I could put my arms in slings and not do anything. The rest of my joints, especially my fingers and ankles, also hurt regularly. It affects not only my desire but my ability to exercise as well… and of course that affects my ability to lose weight which of course makes my joints hurt even more. It’s a never-ending cycle.
Perhaps the scariest Lupus symptom that I have is issues with my kidneys. When my body is taxed too much and a lupus flare starts, my kidneys take a huge hit. There have been numerous times that I had no clue a flare was coming on and it was only when I began to feel kidney pain that I understood. One flare only took 12 hours from the time I started feeling terrible (sudden onset) to the time I was in the hospital with a 105* F fever and an enlarged kidney that was severely infected. This type of problem doesn’t normally occur though unless my body has been under severe stress and lack of sleep. I regularly have kidney pain and infections but not to this degree thankfully.
Finally, one of the hardest and by far the saddest symptom I have as a result of my Lupus is frequent miscarriages. While it’s easy to look at our family and see that we have many, many children, what most people don’t see is the other side of being open to life. Because of my Lupus we have experienced more loss than most can even imagine. We don’t deliberately try to have a baby while my Lupus is flaring, but sometimes we simply don’t know that it’s going to flare. It is a heartbreaking and an incredibly heavy cross to bear. I think the heartache and the emotional distress are a much deeper pain to endure than the physical ones that Lupus inflicts upon my body.
I try my hardest to not allow my Lupus to control my life. I’m not constantly in a flare and there are times I am symptom free, but I have to always take Lupus into consideration. I try to live my life in the fullest possible way and I think because I live this way many people often don’t realize how much I am hurting or that I am struggling in some way. Maybe that’s a bad thing… I don’t know. But I do know that I don’t want to look back on my life and regret not living my life as best as I could. There are times I probably could choose to do a little less and I would feel a little better, but I worry that one day I won’t be able to do much of anything and then I will regret not doing as much as I could do now.
Lupus has the ability to steal my life- both figuratively and literally. I am doing my best to keep that from happening. Thankfully with modern medicine those of us who have this disease stand a fighting chance of living a long life. While medicine can help us physically live longer it is up to us to actually choose to do more than just survive… we have to choose to truly LIVE life. However, we need the help of those who love us most to see us through and to encourage us when times are tough and our bodies simply want to give up.
If you know someone who suffers from Lupus I encourage you to ask them what they need to help them live a more fulfilling life. There will be times that their bodies betray them and they feel like giving up, but with your help they can persevere through the hardest times so that the days they feel good will mean that much more.
If you have Lupus, I am here to tell you that you can get through this! Take it one day at a time, even one moment at a time if you need to. Don’t give up. Enjoy the days that you can and reach out for help during the hard times. I know this is a heavy cross. I’m sorry you have to carry it, but you are not alone. Trust that not only is God right there with you but He has put people in your life to encourage, to uplift, and to help you when you cannot do it by yourself.