I remember sitting across from my rheumatologist 7 years ago and hearing her say that my test results were consistent with what she sees in Lupus patients. Lupus? An autoimmune disease where the body basically becomes confused and begins to attack itself. Okay, so how do we cure this? There currently isn’t a cure for Lupus. It took quite some time for me to process that last line. This thing called Lupus was stuck with me now…a part of me and my everyday life. I wouldn’t wake or sleep without it, and according to my physician, I never would.
Learning to manage everyday life after a diagnoses is something that takes time and patience from both the patient and the individuals in their life. This post is intended to encourage those who have been recently diagnosed as well as to provide a few tips for management of symptoms. Please be sure to consult your physician before making any changes and/or decisions in regard to your health regimen–this is extremely important! I hope that my words and experience help to jump start the conversations that you have with friends, family, and physicians as you begin your journey.
When I was first diagnosed, I had major denial. I was very reluctant to the suggestions that my doctor gave me, I would take my medication but do so inconsistently, and refused to believe that my diagnosis was permanent. This made it extremely difficult for my rheumatologist to treat me and get my Lupus under wraps. While I am still praying and believing God for healing, I have accepted what the current state of my health is and choose to take an active part in working with my doctor to address it. Proper treatment can not come without acceptance…
Develop a Treatment Plan
This can be very challenging because it requires a lot of trial and error. Remember, every patient is different and that means that every patient’s Lupus is different as well. Working with your doctor to determine which medications work for you is crucial to making your everyday life as comfortable and manageable as possible. I personally have gone through several trials of medications that worked for a time period and then had to be removed from my regimen because the side effects just made everything worse. There will definitely be moments of heightened frustration, but this is when your resilience will kick in and you’ll keep at it!
I HATED (and still hate) this part! Several times each year, I am required to see a number of specialists to check the functions of my major organs and/or any parts of my body that may be effected by my Lupus or medication. For me, this includes a rheumatologist (joints), nephrologist (kidneys), pulmonologist (lungs), hematologist (blood), cardiologist (heart), dermatologist (skin), and ophthalmologist (eyes). As frustrating and time consuming as this can be, I have learned the hard way that working hard to prevent a flare is much better than working hard to remediate a really bad flare. Asking your rheumatologist or primary care doctor for referrals of quality specialists can help eliminate the stress associated with scheduling.
I know I’ve discussed this several times in my previous posts, but I can not reiterate enough, how important maintaining a healthy diet is to managing Lupus. Simply staying away from certain foods can improve symptoms and reduce the risk of flaring. Start small–maybe cutting fast food is the first step?! Doing research and determining what works for you (with approval from your physician) will greatly impact your comfort level in the long run!
In addition to eating well, being sure to take time to care for yourself is crucial to your physical health. Daily exercise, staying out of the sun, and taking naps (if possible) throughout the day, are just a few of the implementations that can improve your quality of life. Here are a few more:
- Limit tiring activities
- Get a minimum of 8 hours of sleep each night (some patients need up to 12 hours each night)
- Practice relaxation techniques such as meditation, yoga, and guided imagery to keep your body as calm as possible
- Keep your daily schedule as simple as possible
- Delegate tasks to others and be open to receiving assistance
- Take breaks from your usual schedule and consider working less hours throughout the week
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If you know anyone suffering with Lupus and/or any other “Invisible Disease”, please feel free to share with them directly!
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