Living With Lupus

By Janel Green

In the fall of 2010, my skin started to experience severe irritation. The breakout began with my hands and then spread to my stomach, back and neck. I began seeing a dermatologist in order to determine what was wrong with my body. In November, I was officially diagnosed with Lupus. Identifying the problem was only the first step in the learning process. I've decided to put together a help list of information that I have discovered since being diagnosed in 2010.

10 Things I've Learned Since Living With Lupus

1. Know Your Meds. It could take months before your medicine starts to work. In my case - 9 MONTHS!  My doctor failed to mention this fact to me. Now, whenever I get a new prescription, I ask what to expect.  When will it start to work? What are the side effects? Is there anything I can do to make taking it more tolerable? Don't be afraid to ask your doctor or pharmacist about new medication.
2. Know The Side Effects. I never knew that the medicine that suppresses my immune system has crazy side effects. The pain medication I've been prescribed always makes me nauseous. Eventually, I will have to stop taking one of my prescriptions because it causes osteoporosis, cataracts, facial swelling, weight gain, muscle wasting, and diabetes. Another medicine I take causes damage to the retina over time resulting in loss of vision - its effects are irreversible. Because of this, I have to get my eyes checked every 3 months.
3. Focus on the positive. Sometimes life sucks... but it could always be worse. I've learned to truly value the positive things in my life. There are days when I struggle to do simple things like brush my teeth, tie my shoes, or hug my husband. I personally know someone that had to have all their teeth removed because of an almost fatal reaction to a prescription medication. The medicine caused their tongue to turn black and swollen.  It put so much pressure on their teeth that they had to be extracted. My husband spent years struggling with a diabetic ulcer in his foot which eventually lead to an amputation. The point is that there is always someone going through something worse than you. Don’t spend too much time questioning why something bad is happening to you.
4. Stay Out of the Sun. I never knew why my mom (who has Lupus) never went to Walt Disney World with the family when I was growing up. Exposure to the sun can activate the symptoms of Lupus. By limiting my time out in the sun, I can reduce the chance of skin irritation.
5. Have a Bedtime.  I know that I can stay up till 3 in the morning playing video games...  But my body needs at least 7 hours of sleep or I might have a flare up the next day. To flare up means that your body's immune system is active, inappropriately releasing a variety of factors that lead to the inflammation in my joints, rashes, and a feeling of ickyness.
6. Eliminate the Sodium. When I first got sick, my face, hands and feet would swell up like balloons. I eat a lot of vegetables, so for a snack I might eat some celery. There is sodium in celery. Once I discovered this I began to research the foods I ate so that I could monitor my salt intake.  I did not know that sodium is naturally found in many of the healthy foods I enjoy.  Now that I know this, I try not to add additional salt.
7. Don't See Assistants. Sometimes the Doctor's office will schedule you with anyone except the actually Doctor. You don't have to see the Physician's Assistant. You don’t have to go to the Nurse Practitioner.  You can request the Physician. During a visit with a Nurse Practitioner, I complained about my skin breaking out and how uncomfortable I felt.  Her response was; “Ewww, you're making me itch!” Since then, I request my Rheumy and NOT his assistant.
8. I'm Not The Only One. The scars on Seal’s face are caused by Discoid Lupus.  Toni Braxton has Microvascular Angina which is caused by Lupus.  Nick Canon has Lupus Nephritis which affects his kidneys.  Other celebs with this disease include rapper Trick Daddy, model Mercedes Yvette, and the late Michael Jackson.
9. Lupus Can Be Lonely. There is one person in my life that I thought would be there for me, but when they found out I was sick they stopped talking to me.  That was a huge disappointment, but I will go on.
10. I Can Live With Lupus. After being diagnosed with Lupus, I've become dedicated to learning about the disease and raising awareness for it. The color for Lupus Awareness is Purple. May is Lupus Awareness month. My favorite color is purple and I was married in the month of May. Coincidence?

If you are interested in learning more about this disease and how you can help find a cure, visit www.Lupus.org

Posted in: Emerald Quill,Health,Janel Green,Lifestyles,Living With Lupus