Story by Maureen
Living with a chronic illness – SLE – has proven to be both one of the hardest things in life to deal with. I have, however, grown as a person because of it Growing up, I didn’t get the typical colds or flu that most kids get; instead I was sick with things like mono and Bell’s palsy. I suffered migraines, terrible joint and muscle pain and would sleep for days on end. I just could not stay awake. Like many other youngsters, going to doctor after doctor, everything was related to growing pains, and as I got older, the growing pains turned to stress. No one considered that maybe, just maybe, I was sick.
My doctor finally gave in and sent me for tests. I am not sure if he did this because he thought there may actually be a possibility I was sick; if he wanted to shut me up or if he wanted to scare me by running so many tests. It turned out that the doctor got 2 out of 3 right. After many tests; x-rays, MRI’s, CT scans, blood test after blood test, sleep studies, biopsies and anything else you can think of I was both scared out of my mind – and sick.
After the many tests, I received a call from my doctor asking me to come to the office to discuss the results of my tests. I went to my appointment and at the age of 25 I was told I had “lupus”. Sadly, it became clear very quickly that my doctor at the time had little knowledge of lupus. Sitting in his office, the doctor looked down at my file and made no eye contact with me at all. His diagnosis went something like this – “You have lupus, which is strange because normally women in their 70’s and 80’s get lupus. Take these medications and a specialist will call you to make an appointment”. With that, he handed me a couple of prescriptions and walked out. I sat in the office for a few minutes waiting for him to come back and tell me what “lupus” was. Well, the doctor never came back and I did one of the worst things someone can do once being diagnosed with something. I looked on the internet! All of the research that I found said that I had about 5 years to live. Well, that was almost 4 years ago and I am not going anywhere any time soon.
In the past few years I have been through a lot. I have been diagnosed with a variety of things that all interrelate to SLE in one way or another. I have Sjogren’s, Raynauds, lupus nephritis (kidney involvement), vasculitis (CNS involvement), APS (sticky blood) and have had bouts of paracarditis and pleurisy. I live in pain and fear of the unknown. It has been a never ending learning curve, but despite the pain and things that all go along with lupus I have learned a few very important things:
- I am the most important person in my life – I need to take care of myself before I take care of everyone else around me. I am still working on this but I have improved.
- Listen to my body – if it says rest, I rest. If it says go to the doctor, I go to the doctor. If it says check my INR, I check my INR.
- I have a great support system. I have learned who my true friends are; and that those that I thought were true friends couldn’t handle me being sick.
- I have learned that lupus is not going to control my life. Lupus still has a say in how my day goes, when I need to eat, when I sleep and when I take my meds. It has let me know that I can’t sit in the sun – but if I cover up, I can spend time playing with the kids and that there are lots of fun inside things to do and lots of puddles to jump in on overcast days!
One of the most important things I have learned is that life is short – and to enjoy it. I don’t take things for granted anymore as I never know when things will change. In the mean time – as long as I remember the things that I have learned the past 4 years – I spend more time controlling lupus then it controls me. I live one day at a time, and I try to live each day as it might be the last.
