I received the diagnosis of lupus in my second year of marriage. It was a huge blow because up to that point I only knew of one other person living with lupus, but several who had died from it.
I bawled and the only thing that brought me any sense of comfort was hearing from God Himself. Due to other very stressful circumstances going on in my family at that time, I surely would have given up hope.
For those who are unaware of what Systemic Lupus Erythematosus (Lupus) actually is, it’s an autoimmune disease in which the body’s immune system cannot differentiate between harmful agents and the healthy tissues of the body. So the immune system will not only attack bacteria and viruses, but organs as well.
Treatment for this varies but almost always involves taking steroids which shut down your overactive immune system. This alleviates many symptoms but brings with it a whole host of unpleasant side effects and leaves you with basically no immunity at all and so you’re also now susceptible to infections.
Since receiving the diagnosis, I have experienced a wide range of symptoms; including joint pains and joint stiffness, skin rashes, foggy brain, extreme fatigue, hair loss among other things. I have unfortunately been hospitalized almost twenty times and have had to be treated for other illnesses as well. Some including, steroid-induced diabetes, kidney issues, mental disorders, multiple skin issues, and infections; my medical bills have been through the roof.
Too many times I have had to watch from the sidelines so to speak as I’ve been too sick, in too much pain, or just unable to participate in the simplest of activities from eating at the dining table with my family to attending parties and church events or going on family vacations.
Life with lupus comes with more restrictions than one can truly articulate. Many times you are not even aware exactly of your needs, much less able to describe them to those who would wish to assist you.
How I have survived over the past almost decade has mainly been due to the people God has placed around me and the resources He has made available. I have had a loving support network of family and friends who have reached in to keep my life going in a myriad of ways.
Financial supports, encouragement, meals and groceries, babysitting and childcare, housekeeping are just a handful of the ways I’ve received assistance and not to mention the never-ending prayers.
I have had loved ones come to bathe, feed, and dress me when I was unable to move. I could never have orchestrated all of that on my own if I tried. There is no way I would have gotten through even half of my worst moments without all of these divinely positioned people.
There is a lot to be said for doing the things you know you are to do but lupus is unpredictable. You can be on top of your game, compliant with your medication, following the best diet for you, exercising regularly, maintaining healthy relationships, and a right attitude and still wake up one day to a crazy flare-up (onset of lupus symptoms).
It can be very depressing and many lupus patients struggle emotionally on a daily basis. How do we make it through these days?
Again, for me, it has been the grace and keeping power of God. My own wisdom, strength, finances and capabilities were exhausted probably from day one of my diagnosis. I have had days when everything should have been okay but then my body literally shuts down and I’ve wound up bedridden unable to move. Then there have been days when I’m expecting the worst but have been pain-free and functioning in ways I haven’t been able to in ages.
I have been blessed with making the acquaintance of other persons with similar stories to mine and even though we wish we didn’t have to suffer in this way, it does bring hope to know and listen to others who are striving in spite of the struggles, to share an issue that you thought you alone had and hear ‘I experience that same thing too’.
Knowing you are not the first, last and only one to be going through this helps you keep your head above water.
–Signed An Anonymous Lupus Warrior
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