After a few months being diagnosed with SLE, i then realise that i need to learn how to cope with sle. We do things in our normal way before we are sick but all of a sudden we cant do that things normally and it might take some time for us to adapt in this new situation. It certainly changed our life. We might think it will be impossible to lead a normal life but this is not necessarily true. The important part of coping with SLE is learning to take control over as much of our life as possible. Focus on doing the best we can to help ourselves instead of waiting for miracles such as hoping our lupus would go away forever.
Here are some general guidelines for living with lupus (from a book 'Coping With Lupus' by Robert H. Phillips):- Be aware of how your body feels. How is it reactive to the things you are doing? Act accordingly.
- Understand what makes you tense, knowing what you can and cannot do to change or avoid the symptoms and problems associated with lupus.
- Pay attention to yourself, your goals and your needs.
- Elicit the help of the people around you. Use relationships as a buffer. Join together with others to tackle the cause of your stress.
- Use laughter and humor to reduce stress.
- Build on the talents and activities you can still enjoy.
- Concentrate on strengths and accomplishments rather than dwelling on negative thoughts.
- Follow a healthy diet.
- Get enough sleep. Allow time for rest and quiet and don't try to solve problems at night or when you're overtired.
- Exercise to reduce the effects of stress by bringing blood to the muscles and the brain and stimulating production of the chemicals that give you sense of a well-being.
- Have fun in life. Spend time on hobbies that you enjoy.
- Realizes that you need to do things for yourself and actively think of yourself separately from the symptoms of this disease.
- Think of yourself as a formidable person and not some tired, miserable, suffering person.
- Learn all you can about lupus and seek out appropriate professional help. It is important to recognize when to ask for help - medical, counseling, spiritual, whatever it takes.
- Work on enhancing you relationship with your partner-adapting to the symptoms and being able to experiment to find the best ways to enjoy intimacy.
- Relax to reduce your experience of pain.
- Have your mind, body, and spirit in the best shape possible, so you can conquer anything that comes along.
When we are sick we want a doctor who care for us, trust and listen to every single word we said. Doctor that we feel comfortable to be with. My first doctor was a physician. A senior and ceo of this private hospital. A few times of my appointment with him i realised that after 2 minutes he will get up and seem to give a sign like 'ok now get out from my room, your consultation is over'. Sometimes i forgot what i should said to him. I didn't like him and the only medication he gave me was prednisolone (steroid). I felt a RM50 just to see the specialist in two minutes is not worth it. After few months, with low dose of medication and two months off the medication there were many downs. I know his intention might be to reduce the side effect of prednisolone. But doc i feel so weak and it effect my work and life. Anyway because of that, the flare came along with new simptoms.
I seek for another doctor from another private hospital. He said i shouldn't be tapered off the medication since i still new. He wanted me to see a kidney doctor but since it was holiday season (Hari Raya) the kidney doctor is still on leave. Hahaha........he wrote the letter to my physician requesting for my test result. My physician refused and said just stay here and i will refer u to a kidney doctor here.
Ok....so finally i met the right doctor that care for me. He care and would listen to everything i said. Probably because he seem to have very few patients. He gave me steroid, immunosuppressant and antimarial drug that work perfectly for me. The immunosuppressant he gave me name Cellcept was only a sample supply for two months. He said it will cost me RM1500 just for cellcept. It is my whole salary for a month. I said to myself that i need government money to help me hehehe. So i decided to be referred to government hospital and i'm now paying RM5 instead of RM300 every month including the medication. The only different is i have to wait for two weeks for blood and urine test result and then see doctor compare to private where i can see the doctor next day.
I know everyone has their own experience with chronic disease. We cant determine our future in health. It is in the hand of god who decide it. I was surprise that i had lupus in my twenties. It all started with a wrist pain. A week later, all the finger joints feel stiff until i need help from my sister to take off my own clothes in the morning. Then the toes, elbow and shoulder came along. I think every week i go to different clinic. The first reason was i need sick leave....hehehe..so that i can prepare things for my wedding. One month till my wedding day. Second was of course i'm afraid what was wrong with me. All the doctor said the same thing i might experience rheumatoid arthritis and need further checkup.
My father sent me to Normah Hospital very near to my house 500m away. After checkup, my uric acid was high and i though it was gout. My oldest brother has gout. Maybe it run in the family. Rheumatoid came out negative. My wedding day is one more week left and i still dont feel well. I begin to have fever and weak. I complaint to the doctor and burst in tears probably because of stress and worried for the wedding day.
I was refer to a physician. He said i had an autoimmune disease. But dont know which type. So he did further tests on me. At home, i check on the internet one by one about autoimmune diseases. Until i found two diseases that might match to what i experience. One of it was SLE. Two days later finally they said it SLE.
Doc gave me 20mg prednisolone a day. Finally the next day the pain gone. Happily sat on dais with my husband and didnt complaint any pain.
