It is with a heavy heart that I write to my sisters who share this unpredictable, auto-immune deficiency disease. My empathy overflows when I see vital, mostly young, women who are just being diagnosed, but are hopefully learning how to care for themselves, when even doctors may be challenged how to fight this indefinable illness. Know your own body … what works for you … what triggers the pain, fatigue, and anxiety that comes with this insidious wolf (root word, Lupus, means “wolf” in French) that dwells inside us, eating away our hopes, dreams, and futures … literally.
I recently had a drug side-effect from a new-to-me medication, which hospitalized me for almost a week. I advocate for the cure, support, and especially understanding from others who may not be able to “see” the wolf lying in wait to take away our spirit, self-esteem, and essence from our loved ones.
Help find the cure: www. lupus.org.
BowmanAuthor and Writer/Editor 
Thank you for sharing, dear friend. Stay courageous, inspired and strong in faith. Blessings to you, Deb, always!
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Thanks, Sylvester. Your sincere, heartfelt, and meaningful poetry brightens even my darkest day.
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You’re welcome, Deb and thank you, that means a lot to me. Blessings, dear.
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Thanks for sharing, Deborah. I agree with Syl, and would like to add that your inspiration and the urge to tell stories drives you, mellowing the symptoms at least a little. ☘
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Karen, my words, my editing and critiquing of other writers and authors helps to keep me focused, positive, and makes me feel like I can make a difference in the industry I love!
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I am with you Deborah, my friend. Sending you prayers and blessings that a cure be found
soon.
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Thank you, Anne. I hope you are doing well. Writing for us burdens the soul and brings a small relief.
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Thank you for sharing this. I’ve been diagnosed since 2015, but just now getting to the point where it is eating away at my every day life. It is nice to know that I am not alone in my struggle.
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Sorry you’re battling this too. I swear the meds are making me sicker than the disease right now and I feel caught between a rock and hard place.
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Unfortunately, I know the drill. The meds, especially steroids, cause havoc with both the mind and body. I send you blessings and strength!
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Thank you. I’ve totally refused to Prednisone. I’ve turned it down numerous times now. Now the Cellcept and the other meds before it have caused a complication where they don’t want me on Pred as it will not heal.
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I’ve been off and on prednisone for 27 years. I also chose to tAke myself off of it on a continuous basis 21 years ago as well as opioid pain killers. It’s been a difficult transition, but I feel like I have some control. Holistic approaches can help as long as you stay away from the supplements that promise everything and do nothing. I’ve found Reike helps me. Best wishes!
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They are tough decisions to make that’s for sure, but I think we have to do what we feel will give us the best quality of life I think. Dr.s don’t know how we feel. Only we can know that. Best wishes to you as well. I’m glad that you’ve found some options that help you.
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So far, so good … after my drug interaction problem. I find that knowing yourself physically and mentally is the best preventive care there is. Only we know what we do and do not respond to. Blessings and healing white light coming through cyberspace to you direct from my heart and soul.
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I’m really learning that through this. For the last year and 8 months the meds have made me sicker than the disease. I’m so done with that. I’m off Cellcept which my Rheumie knows about but what she doesn’t yet know is I’ve stopped plaquenil too. I can’t be living like this anymore. I’ll be going to see her hopefully next week to get approved for Humira. I’m hopeful this will help without killing my gut.
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I’m on methotrexate and have been for years. I have IBS as the result, but without it, I would be totally deformed and crippled. The new drugs, unfortunately, have the same side effects as the older ones by repressing the immune system. An injection, which I give myself once a week, is not as severe on my stomach as the pills which I couldn’t take at all. I went off plaquenil a couple of years ago for the same reason. Good luck and blessings to you.
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Oh yes I was on mtx for six months. It caused tons of auras, the runs, and I developed asthma with it. I had a rough time breathing. I will be going on Enbrel I got the script today, but I have to get approved by my ins. company and then find out about getting the 20% we’d have to pay covered first. $1800 a month won’t do. LOL Sorry the disease and meds have caused you so much grief. The doc is now calling what I have sero negative Rheumatoid Arthritis for Ins. purposes. To me she say inflammatory arthritis with mild lupus symptoms. Why she can’t just call it RA to me I don’t know. When I start the Enbrel it will be a once/week injection as well. It’s good to hear the biologic is not as severe on the stomach. I’ve now got colotis or crohns like symptoms and they want me to have a colonoscopy. That terrifies me.
Blessings to you too!
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Enbrel may be a good choice for you if you can’t tolerate methotrexate. Best wishes and let me know how you fare. I, too, was fearful of the colonoscopy, but they found a polyp that was turning malignant so it saved my life … Just a thought.
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Thank you. That’s wonderful that it saved your life!
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And thank you very much. Back to you too. How are you doing?
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Okay. The mental anguish and fear I have of doctors now is perplexing. It makes me sad that I no longer trust those whom I once believed were trying to help me.
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I completely understand and I’m sorry it’s that way for you too. I wonder what ever happened to “Do No Harm?” 😦
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The natural herbal remedies of the past (“And let it harm none … So mote it be”) got lost in the $$$ of crippling drugs that cause as many problems as they treat. Harsh, perhaps, but true.
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Sadly true.
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I have had Lupus for 11 years now, some days are a struggle and I try my best to do everything possible to keep myself up but somedays it get really hard. Even though I have had it so long I’m still learning it’s like something new happens with every flare. Thanks for sharing.
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I hope I can help you with what I have learned in my 27-year journey with the Lupine Wolf lurking in the shadows. Please feel free to contact me for information and sharing. I send you blessings and white light healing, Deborah
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Reblogged this on THE WORLD GONE MAD.
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I’ve had lupus for 7 years now. I know some days are a struggle for me as well. Just joined this blogging network. I’m happy to see there are fellow Lupies on here.
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We have to support each other because even our doctors can’t always understand what we go through. I hope you are stable. I’ve been dealing with this for 28 years. If I can answer any questions for you, feel free to contact me. Blessings and be strong!
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Thank you 💜
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