I'm a 46 years old black female married with two children age 26 and 18. I was first diagnosed with Lupus (SLE - systemic lupus erythematosus) in 1995. It all started with a throat infection and joint pains that lasted for several weeks. My doctor referred me to the hospital to see a rheumatologist and I mentioned that my mum had lupus. A test was carried out and it was confirmed within two weeks that I had SLE. I suffered with mild symptoms such as hair loss, fever achy joints and fatigue for years but was blessed as I only had to take mild pain medication and was able to maintain an active lifestyle and a full time job.
In November 1998 I was prescribed Warfin for my sticky blood. I'm not sure if this was the start of things to come, or that I just ignored the warning signs I was getting - especially the stress at work. The feeling of unwell, joint & muscles pains ("A lesson I would never forget"). In February 1999, I had a treacherous flare-up and was admitted to hospital with suspected pneumonia, after a week in hospital and with my rheumatologist Doctor away on holiday, I progressively got worse. I developed inflammation of the lining of the lungs (pleuritis) and of the heart (pericarditis) and lung cloth (pulmonary embolus) resulting in five weeks in hospital. I was sent home on 20mg Prednisone a day and 100mg Azathioprine. After seven months at home I returned to work in September 1999. I stopped taking the Azathioprine because it did not agree with me, and was able to reduce my dose to 7.5mg Prednisone along with 400mg Plaguenil and 600gm Lodine. I slowed down quite considerably being a lot weaker. I knew I had to make a drastic change to my lifestyle.
In September 2000 I was admitted to hospital with a haemorrhage I had to have five and a half pints of blood transfused and a week later a major operation. I know that I had put my family through a lot recently but this one was a shock to them, not knowing if I was going to pull through - but the almighty had other plans for me.
I experienced the up and downside of this disease and after what I went through I know the importance of having someone you can relate to especially from your own ethnic background with the same illness. In November 2001 I attended a contact training course and have received numerous phone calls for support especially from black women who find it very hard to talk about and to deal with this illness.
I suffer mostly with joint pain in the knee and shoulders, muscle weakness in the hands, stiffness and vasculitis (inflammation of small blood vessels). This makes simple chores like dressing and undressing, combing my hair, lifting an empty saucepan, taking the milk out of the fridge and opening cans an effort, pulling the duvet cover over you is like wrestling with a polar bear. I no longer go shopping on my own, walking tires me out, the shop doors feel a ton to open, carrying the slightest purchase feels like lead - the list is endless. People only see the outside but when you have Lupus it's what going on the inside that matters.
This illness can bring a family closer or can be devastating to some. Family members have to help you deal with your plight as the illness effects your social/family life, you can't make forward plans. My family is my rock. My husband does almost everything for me; from cooking, hovering and tidying up. My daughter no longer lives at home but we are very close and she is there for me 24-7. My son is a treasure; he is well-adjusted teenager and will help his dad and me with also anything. My mum is my tower of strength because as a lupus sufferer she knows exactly how I'm feeling and my sister is a wonderful friend. With any disease you get to know who your friends are and who is there for you. Some people find it very hard to accept your situation because with Lupus you look very healthy. I'm blessed to have unconditional love and support from my family and friends - not everyone is in this fortunate position.
I had to reduce my working hours from 35 to 20 hours. Work keeps me busy which is good as it takes my mind off being sick and I hate sitting around feeling sorry for myself. It is important for my mental health to still have something to get up for in the morning. I work at Middlesex University with a team of lively, good humoured supportive colleagues who are sympathetic to my health needs - which is comforting, they know and understand my good days and bad ones. My manager even took the time out to learn about Lupus and encouraged me to do a Lupus Awareness event at Tottenham & Enfield Campus with the consent and help of the Health Advisor Services. This was very successful; I was also amazed at how many people know someone with Lupus.
This is a troubling disease, to say the least. I still have to take Prednisolone, Plaguenil, Etodolac, Warfarin and recently Methotrexate plus the painkillers. This illness has helped me to put things into perspective. Health and family is number one, dealing with the pain is hard enough and I no longer care about what used to matter. I go with the flow and hope for the best. Laughter and slowing down to appreciate the small things in life are important to me now and always will be.
To sum it up, a positive attitude, prayers and having faith in the almighty healing powers .I wish that one day we will have a cure or a reason why.