Your Opinions and Advice Are Now Considered Garbage
I research every medication I am prescribed. I have doctors explain my test results as if I am 6 years old. I ask questions and when doctors don’t answer in a way I fully understand, I rephrase and research. I weigh the benefits and risks before deciding to take a medication. I have a healthcare team; they are not in charge. They don’t say, “Take this medication,” and I just run off and take it. First, I need to fully understand how long I will be taking it, how it will help me long term, and what effects it will have on my body.
Since I first shared my diagnosis, I have received inbox messages with advice on how to eat, what to drink, how to boost my immune system (definitely don’t need this), and so much more. The people I actually knew were doing their best to help me through a bad situation, but there were many I didn’t know or who attached a price tag to their so-called solutions.
This has been one of the most interesting years, and we are really witnessing people’s raw emotions. There was so much anger and fear that I had to take a long break from being online. I nurtured my houseplants, painted wine bottles, sewed pillows, filled planters, made jewelry, and now I’ve been designing adult coloring books. Anything to avoid the vitriol exhibited so constantly. I saw this situation as a reason to pull together. Instead, it caused much division.
Hydroxychloroquine, a common lupus medication, and chloroquine, an antimalarial medication, became a humongous news story when they were floated as a potential treatment option for COVID-19. There were shortages in many places. Some insurance carriers stopped supplying medicine to those who had been taking it for years in favor of those potentially affected by the virus. I went on a crusade to share that it was not fully approved for COVID-19 patients and that studies were showing time and again it offered them no real benefit. People were hoarding it. One couple self-medicated with the wrong version and the consequences were dire. Whenever I shared links to studies, I was met with anger and told I didn’t know what I was talking about because someone with power said the medications were OK — but he doesn’t have a medical degree.
Making medical decisions based on celebrity or fear is irresponsible. These are the very same people who sent me articles and advice in years past. Eventually, the U.S. Food and Drug Administration stepped up and cautioned against the use of hydroxychloroquine or chloroquine for COVID-19 outside of a hospital setting, which I had been saying all along. I was following the studies, not the evening news.
However, this gave me a different perspective of the people who’d offered me “help” in the past. These people blindly put their healthcare in the hands of a person who has no medical skills whatsoever and doesn’t know them from a hole in the wall. All of the people who acted like they’d researched the “solutions” they sent me were liars. Their opinions and advice all at once became garbage. I am so serious about my healthcare that I question trained professionals; I dare not take the advice of a stranger on the evening news.
The way people were acting made me very angry initially. I was making ugly statements, spewing my own form of venom. That’s when I knew it was time to take a social media break. I don’t spew venom and the nastiness was contagious. I had to stop the spread. In the process, I set new boundaries. Unless you have Ph.D. behind your name or specialize in rheumotology, hemotology, pulmonology, etc., you are no longer allowed to send any medical opinions or advice to help me combat lupus symptoms. When you don’t take your own healthcare seriously enough to follow the research, you definitely cannot tell me anything. Your opinions and advice are officially garbage. If you want your best quality of life, ask questions of people who actually specialize in that area.
***
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.
About the Author
Joyce Pamela Saffarano
Always a pleasure to read.
Kellie McRae
Thank you :-)
Darlene McIntosh
Kellie, I so enjoy reading your articles
As a Lupus warrior you really hit the nail on the head in every article you post. I hope you only know how many people you help thst ybey are not alone with this disease. Thank you.
Kellie McRae
Thank you Darlene, I appreciate your kind words. I just want to know I'm not alone and I am glad to let others know the same thing. The battle may be a little different for each of us but we are rowing the boat together.
GJ
Hi Kellie-
Thanks for sharing your viewpoint. Just wanted to let you know that the couple who took the aquarium cleaner had nothing to do woth anyone discussing benefits of hydroxychloroquine. The DA in the county in Arizon where this occured charged the wife with the murder of her husband. She may have blamed her intentionally feeding her husabnd enough aquarium cleaner to kill him on others, but the investigation showed she intentionally killed her husabnd and hoped to tarnish the President she vehemently hates. Best wishes.
Kellie McRae
Hi GJ, Thanks for the update. The mere fact that the drug was touted by the press blurbs as an option gave her a weapon. The point of my article is that we should not be getting our medical advice from people who have no idea what they are talking about. We should be looking to research things for our own benefit. This couple were just an extreme example of what many were doing. Taking prescription medications based on a news conference is unwise regardless of the motive.
Tricia
I agree with everything you've said. I always enjoy reading your articles and I think you are so brave. Maybe someday I'll be brave like you.
Kellie McRae
Hi Tricia, Thank you for stopping in, I don't think of myself as brave but thank you. I, like you, are just doing my best so that makes both of us brave :-)
Brenda D'Onofrio
I hear ya on the Hydroxychloriquine issue! Had one of those quote friends who kept posting articles on it. At first I tried to explain the facts, but would get shot down in comments from others posting on it. I gave up, decided it was waisting my time. Not long after that, I had to go off Hydroxychloriquine, because of neck pain on the right side, nearly collapsed, and passed out in the hallway, and my hands were literally as cold as ice. I've always been skeptical of medications, as I've had some interesting side effects. Loved your article. Your not alone.
Kellie McRae
Hi Brenda, you sound like me, after a while it seems some people just want to remain willfully ignorant. I shared what I could but as the old adage says, you can lead a horse to water but you can't make it drink. Sometimes we just have to deal with thirsty horses standing next to a water source.
EmilysHQ
Hi Kellie great read & you're on point re: Phders. It's up to us to take responsibility for our variations of Lupus and I'm riding your bus of research, research, research. I am very sensitive to meds and in a sense I am glad for this anomaly. I've have had to search far and wide,with a little trial n error, for alternatives; so far so good. The ignorance demonstrated in social media is mind boggling but, it's a sigh from me and scroll on. "Hurricane On!"
Your new fan, Em
Kellie McRae
Hi Em, welcome to my nonsense and shenanigans as my new fan :-) I am glad you know how important that research is. We have an uncommon, common disease lol I mean that on the one hand so many of us are diagnosed but on the other hand the way our bodies respond is so vastly different that I feel research is almost imperative because unfortunately, our doctors can't know it all. I have a vested interest in my body so I try to be that partner that has vital information that affects me and I think we should all be that way. Thank you for being my new fan, I hope to hear from you on future articles. Have a great week!
Crystal
Hi everyone,
My name is Crystal, after many years of pain and suffering I was diagnosed with SLE which they first thought was Ms I have to say I was VERY surprised if this diagnosis! What also suprises me even more is how all the food I eat I'm hearing are bad for me and I Don't understand how dark greens like broccoli and spinach.. which I love them both as well as yogurt! How can these foods I've been told were good for me and to always eat dark leafy greens.. the darker the better! I was never told this stud have been eating as much salads and yogurt as possible so to then hear this I'm sooo beyond confused by this lupus do's and don't, Every where I look the info is different!! Then I read about a two step cure by taking two medications, one being metformin..has anyone ever heard anything about this too?
I'm sry I'm just Soo confused and feel so lost and like everyone else would like to have as much control over my treatment as possible and would like to go as natural as I possibly can bcuz these medicines scare the crappy outta me sooo much so that I have yet to take anything, PLEASE HELP ME LIKE I SAID I AM SOO LOST AND CONFUSED ABOUT EVERYTHING ANYMORE 😥🥺💔!!! TAKE CARE N BEST WISHES TO EVERYONE 💗!!
Kellie McRae
Hi Crystal, I remember feeling lost and confused when I first got diagnosed, I still feel that way sometimes. I am not a medical professional and chances are, neither are a lot of people who are offering you well-meaning advice so I certainly cannot tell you what to do, I can only share my personal experiences with you. With regard to food, I will say I learned to listen to my body. I became plant-based not because of what others said but because my body started actively rejecting meat. I would either get an upset tummy within 30 minutes of eating it, it started tasting like sawdust to me depending on the type of meat, what was still somewhat flavorful would cause me to feel tired and would cause pain so I stopped eating it. Some say you shouldn't eat tomatoes but they don't bother me so I eat them. I kept a diary of my symptoms, foods I ate, and how I felt 30 minutes to 2 hours after eating them so I know personally what works for me food wise. I also researched things that I could add that help reduce inflammation like turmeric, cinnamon and things of that nature. I say talk to your doctors about the medications because again, we all respond to things differently and they are going to know what is best for your body since they have all the blood work. Lastly, you will learn along the way to be a bit more forceful when it comes down to your health helping you to leave behind that feeling of everyone else having control, you are going to have to learn to advocate for yourself and that will come with more research on your part because the more you dig, the more questions you will have but also you will have a lot more knowledge and can make more informed decisions. I hope some of this has helped, wishing you the best.
Marcia W
Crystal I was recently diagnosed also along with 2 other auto- immune diseases .... don’t know if you will see this but my email address is
[email protected]
I’ve been a researching maniac these last 2 months. My name is Marcia
I thank the powers that be for Kellie.. I’ve watched all of her YouTube videos ... she lifts my spirits
Peace
Janis R
Kellie, just read your informative piece. I was diagnosed with LUPUS back in February. Covid hit and everything else at that point. One visit with a rheumatologist and everything went south, no clear idea of where to even begin, no meds except the doc saying to take Aleve. Doesn't work for me. A prescription for Hydroxychloroquine is provided, without a lot of knowledge, found out 2 months in my body can't tolerate the side effects. Started out on the research about what has happened to me and know that natural elements and select foods have a lot more to offer me than the chemicals that are being prescribed. Thank you for your sharing, it makes feel more like I am not alone.
Kellie McRae
Hi Janis, what a time to get this diagnosis! I am a plant-based person because it certainly helps. Unfortunately for me, I have overachiever lupus and I must have some of the medications that are required. One thing I learned fairly early on for sure is to research it all. The meds, the foods, the doctors, I take nothing for granted. When they offer me medication, I tend to offer a lot of questions. I need to understand risks and benefits because the side effects really can be ugly for a lot of what we take. I often tell others that these doctors deal with multiple people battling multiple diseases, I am but one person battling my particular disease and I have a vested interest in knowing as much as possible about it. I wish you the best as you navigate through this, research is your best friend for sure.