Lupus is a complex immune disease, often linked with others. My journey began at 17 with Hashimoto’s, requiring lifelong thyroid hormone treatment.
Learning More About Lupus
Lupus itself is an immune system problem where your body’s defenses become too active. They start attacking your own organs as if they were harmful invaders, not parts of your body. Even though I read and look into this a lot, I keep finding new things. For instance, no one really knows how Lupus starts. We do know it has no cure. Also, no single special doctor treats this disease, which often means it takes many years to get a diagnosis. You usually only get a diagnosis when a kind doctor puts all your symptoms together and talks with other specialists. Still, sometimes doctors with big egos don’t want to admit they missed something earlier.
My own case shows how hard this can be. My medical team includes doctors for allergies, lungs, heart, bones (one for knees, one for hands), skin, joints, teeth, mental health, and a general doctor. Each one treated my symptoms to make me feel better.
Common Signs and How They Differ for Everyone
Lupus can show up in many ways, including constant tiredness, painful or swollen joints, swelling in hands, feet, or around the eyes, headaches, slight fevers, sensitivity to sunlight or bright lights, and chest pain when you breathe deeply. It’s important to remember that no two people with Lupus have the exact same symptoms, and you might experience other signs not listed here.
Dealing with Treatment for Lupus
Treatment usually handles each problem separately. However, doctors often give two types of medicines to slow down the immune system. For me, one is a medicine used also for malaria, and the other is a weekly shot of chemotherapy. While these medicines greatly help with joint pain, tiredness, and ‘brain fog’ (trouble thinking clearly), they also bring tough side effects. Another hard part about these medicines is that even a small sickness, like a cold or allergy, takes a very long time to heal because the immune system is not able to fight properly. Sometimes, depending on the health issue, you might need to stop the immune system-slowing medicine for a bit so your body can fight off an infection.
Daily Struggles: Hair Loss and Other Health Issues
Hair loss is another upsetting side effect; my hair has become thin and doesn’t grow much. The medicines I take directly cause this.
Also, being in the sun creates a big problem for me. At best, it stains my skin, but usually, my skin gets red, swollen, and tender.
Every day, I take Vitamin D3, Vitamin B12, biotin and various medicines for environmental allergies, asthma, rashes, depression, anxiety, cholesterol, good gut bacteria, cranberry, skin allergy, pain relievers, antibiotics, and cortisone.
Living with Lupus: A Constant Effort
In the end, Lupus is a disease without a cure. But, with steady effort, you can manage it. For me, getting full control is still a challenge; just when I think things are stable, something new happens to upset the balance again. So, learning to live with the symptoms, along with eating better to lower inflamation in the body, is key to living a life as close to normal as possible.