Lupus is a very difficult disease to diagnose and there is no cure! There are treatments (which can be horrific) but basically it is hold on for the ride of your life. It affects organs, joints, memory, etc.
Definition
By Mayo Clinic staff
Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms.
Symptoms
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
• Fatigue and fever
• Joint pain, stiffness and swelling
• Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
• Skin lesions that appear or worsen with sun exposure
• Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
• Shortness of breath
• Chest pain
• Dry eyes
• Headaches, confusion, memory loss
I can honestly say it has changed my life. I have also found out who my true friends and family are. My sister and my kids have been amazing! My parents are just starting to understand the magnitude of this disease. I am not sure what hurts me the worst, the pain of the loss of memory/brain fog. A few months ago my sister was asking me about something and she started getting mad at me until she realized I had no idea what she was talking about. The fatigue is heart breaking, my boys have learned to look at it in a positive light. If the fatigue is kicking my butt we have a movie night where we hang out in my room and watch movies.
The physical pain is something that is different for everyone. The amount of pain, the ability to tolerate it, etc. I have gone through two major diet changes in the past five years which seems to help some times, but defiantly not all the time. Prior to my diagnosis I was running marathons, triathlons, I was very active. Now I have to play my physical activity day-by-day. I cannot/will not make promises anymore because I don’t know if I will be able to move tomorrow or not.
Don’t get me started on the side effects of the medicine! Prednisone? Weight gain! Yea, like lupies need extra weight on top of all the other issues. Methotrexate? Difficultly breathing, weight gain, oh yea and it is also an abortion pill! Plaquenil – you need to have an eye exam every six months because it can mess with eye site! Hair loss, mood changes, confusion…
I asked my younger son how he feels about me having lupus and he said he hates it and it scares him. I asked him to expand on it and he said, with tears in his eyes, that the way I act, “you know in pain all the time”.
Lupus sucks and there is no cure!
