Pauline's Story

I have Lupus. It's funny how you know that there is something wrong with you, even though every test seems to say otherwise. I had the usual problems that many women face. I have problems with menstruation, migraines, depression, tiredness, aches and pains. Well I least I thought it was normal. I just learned to live with it. Thank God for the female doctor I had the opportunity to meet; she listened to me and sent me for tests. After examining the results, she then sent me to a rheumatologist where I was diagnosed borderline Lupus. What is borderline Lupus you say? Good question, I wasn't too sure what it was either. Turns out my problem was that I minimized my symptoms so much that she didn't give me a definite diagnosis. I have since learned my lesson. So I continued, living with the symptoms and not bothering to see her for another year. After that I just didn't bother. I was depressed that I felt this way but nothing was being done. That is when I began to research what Lupus was. I went on many forums and read the stories of others and their journey to a diagnosis. I realized I needed to change my approach. Finally, something good happened. I was getting some asthma symptoms (not good), so my GP sent me to get tested. I was sitting in the office after my tests to wait for the Immunologist when I started to realize that this person might know something about Lupus. Lupus is an autoimmune disease and she was an immunologist! She must know something about the immune system. So I decided to discuss it with her. She said yes, she had done lots of work at McMaster University Hospital in the Lupus Clinic. Well I tell you, that was music to my ears. I started to get excited and have hope. We discussed my situation further and she was glad to take me on. She sent me for lots of blood tests and I brought all my previous blood tests from years before. She diagnosed me right then and there with Sub acute Cutaneous Lupus Erythematosus. Was I relieved~ I wasn't crazy after all and my depression was not my fault. There was a reason that I felt like this and it wasn't because I wasn't trying hard enough. Well she started me up on Plaquenil and anti-inflammatory drugs, which helped me cope. I was so happy to be finally treated for this disease. Hallelujah! I know is may seem funny to be happy about such a terrible diagnosis, but it is true. Finally knowing what I was dealing with made me happy. Well of course that happiness was short lived. The illness itself is very difficult to cope with and it's not just the symptoms of the disease. There is the emotional and mental toll that it takes as well. There are so many things you just don't think about when dealing with a chronic illness. It's really very hard to explain to someone who has not experienced it, but I will Endeavour to try. Since my diagnosis, I have had many challenges with this disease. I have tried to hold down a few jobs and lupus always seems to interfere. The first job I tried after diagnosis was working in a retail store. Eventually the strong fluorescent lighting triggered a flare in me. I was getting migraine headaches, fatigue and painful joints. I had to quit this job as it was affecting my quality of life too much. This was very discouraging. What could I do to help out my family financially? It was getting harder and harder to find a job I could do. Lupus is a funny disease as it affects so many aspects of your life. It usually does not have just one symptom but many. This causes confusion in what type of treatment could be needed. I suffer from myriad of symptoms; such as, fatigue, migraines, painful joints, TMJ, depression, IBS, GERD, chronic constipation, memory problems, and anemia. Living with Lupus is most challenging as it appears to all that I am well. I still function, and look well on the outside. That is because I have learned to carry on with this. What are my other options? Those with lupus tend to feel like we are a burden to those around us, because many days our fatigue is so great we can barely get out of bed. Most times we force ourselves out of bed to function as normal people. When do you push, and how hard? That is a question Lupies ask themselves every day, sometimes every minute. Should I push myself today? Should I do this now? I'm tired now, but well maybe just a little more. I mean how much time should one person rest? How long is long enough? How hard and how far should I push myself each day? These are all valid questions that I find myself asking every day. I think well I don't feel good right now, should I ignore it and just continue to do my chores. After all there are lots of people who don't feel good and still get up and go to work. Why should I be any different? Well partly it has to do with the how people view illness. There is a prevalent attitude that says, "pick up your bootstraps and carry on". Who takes the time to be sick anymore? You take a pill and you keep on going..... The problem with that mentality when it comes to Lupus is that even though you can keep going, should you? What price will you pay for pushing? If you push Lupus too hard sometimes it pushes back with worse symptoms that cause you to digress for longer periods of time. Pushing too hard can cause to disease to accelerate. This is a frustration with the disease. Lupus can become serious at any time. It can affect the heart, lungs, kidney, liver, nervous system, and blood. The other frustration of Lupus I face is that of feeling like a hypochondriac. So many symptoms together cause one to feel discouraged and overwhelmed. I go see my doctor and he endeavors to deal with one aspect of the disease one at a time. This is a long ordeal which can be very frustrating for patient and doctor alike. This causes a lot of emotional difficulties that tend to plague most with lupus. The stress and emotional issues again play havoc with the disease. It’s like one vicious circle that goes round and round. It takes emotional and mental strength to cope and many find it just too difficult. I have taken the approach of proactive health. I work hard to find ways to improve my health through exercise, diet and attitude. Every day is a challenge and lots of work. I hope one day there will be a cure for this disease, or at least a way to keep it dormant. Thank you for listening to me. I hope this helps you to understand what it is like to live with lupus.