Complications Due To…
Almost daily there is a report inside one of my support groups that someone has received their butterfly wings – a term I use when someone has passed away from lupus. This happens more often than I would like to discuss. I am often bothered that their deaths are reported as being caused by heart failure, kidney failure, or liver failure. Organ failure can be associated with lupus, so there would be less of a probability of someone developing these problems if they did not have lupus. I guess it is a bit of a mouthful to say someone passed away due to liver complications brought on my lupus, but I wish the dangers associated with lupus were acknowledged.
When I tell people I have lupus, especially now that I have no more hair, they automatically want to compare it to cancer. Let me put out my disclaimer for what I am going to say next: I have never had cancer and would never diminish anyone in their fight. However, some cancers are treatable and if caught early, it can be eliminated from the body. Lupus is incurable, although there is the chance of remission and some may go years without a flare. Even though one of the treatments for lupus is chemo, it does not completely remove the disease from the body.
People expect you to die from cancer, but they don’t expect you to die from lupus. According to the National Resource Center on Lupus, about 10-15% of lupus patients will die prematurely due to complications caused by the disease. Although disease management has improved, lupus can still be a fatal disease for some patients.
I think that celebrities who do come forward and share their own complications and battle against lupus help bring awareness to this disease, but there is still much more to be done. There needs to be a better understanding how dangerous lupus can be, and the impact it can have on patients’ lives, from chronic pain to brain fog.
When I was first diagnosed and started attending support groups, I would wonder why people were asking about things that seemed unrelated to lupus. Then I learned about how lupus can effect different parts of your body and cause different symptoms. A sore throat, cold hands, tingly legs, and dry eyes are all complications due to lupus.
If you take nothing else from this column, know that lupus does kill. It beats up everything in and on our bodies: skin, hair, heart, lungs, brains, blood, and platelets. If you have flowing hair or glowing skin on your body, lupus will do its best to try and destroy it.
If you meet a lupus warrior and they are having a tough day, remember to have a little compassion because they are suffering from complications due to… well, you know the rest.
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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.
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Comments
Colleen Souders
Thank you Kellie for your blog. I can really relate to it and have shared them. This one hit home after this past week. Allergies vs cold plus GI issues, brain fog, weather changes=increased joint pain,and the band plays on.
Kellie McRae
I so can relate with the weather for sure, its rained the past couple of days and my body has been like "hello, hi, good day!" lol I was speaking with someone regarding business today and a few times I said to him, I had a point but I don't know what it was so if you have any idea of where I was going, please put me back on the road. We laughed and I was just grateful I could make a joke and not be annoying for the constant fog that kept showing up.
Jeanie
I had immune hemolytic anemia and docs just didn’t know why or how to treat forva long time. 3 hosp visit in 8 was; one involving 6 nights in ICU. Why are good Rhumatolist so hard to find?
Jeanie in MD
Kellie McRae
I always say that finding a good doctor is like finding a good mate, you have to kiss a lot of frogs in order to find that prince.
Suzanne Gratcyk
Thank you for those articles yes I have felt the same way,better to be happy others don't need,to see the pain I try to lift other as well, yes it takes a toll on our bodies, emotionally, thanks again you put the way I feel you aren't alone, have a blessed day Suzanne
Debbie Millimet
Good morning Kellie. I love reading your blogs. I would like to address the importance of getting your yearly eye exam while on Plaquenil. I have been on Plaquenil since 1996. I often skipped eye appointments busy I was busy and had the idea "I'll call next week". Next week just never came until the following year. So, yesterday I had my eye appointment 1 and a half years late. They found Druson in my left eye. Having Droson is a precursor to Macular Degeneration. Not sure if they'll be taking me off Plaquenil yet. Have to see my Rhuematologist first. So fellow Lupus warriors, please if you are on Plaquenil, get your yearly eye exams!! Ladies, schedule it with your yearly gyno exam. Your eyesight is a precious gift!!
Kellie McRae
Awesome advice Debbie. I go every 6 months because when I first got diagnosed, I did a lupus walk and there was a blind woman there. I never thought anything of it, I'd been prescribed Plaquenil and no one had shared with me the need for the eye exam and just before we ended our conversation, she let me know she'd become blind because of the Plaquenil. As soon as she walked away, I burst into tears. I get my eyes looked at now every 6 months, just got 2 new pairs of glasses this month in fact (never had to wear them before, now I have a pair for near and a pair for far). You are so right, DO NOT put this off, it really is too important, thank you so much for that reminder.
Suzanne Gratcyk
Thank you for those articles yes I have felt the same way,better to be happy others don't need,to see the pain I try to lift other as well, yes it takes a toll on our bodies, emotionally, thanks again you put the way I feel you aren't alone, have a blessed day Suzanne
Jill Blackstone
Very poignant post and I can feel your pain. Will I die from lupus? Sometimes, when my heart is breaking with my own grief since my sister (best friend) passed away in an unrelated tragedy, I wished lupus would speed up its act and just take me. And yet here I am. Why do I keep trying to stay one step ahead of lupus? Why do I take medications that may in fact shorten my life span? Because that's what we do. We are warriors. And we don't go down without a fight. But never forget, it is a fight. We will all die someday. What I pray for is that we live longer, more fulfilling, less painful lives, and that none of us suffer.
Vanna Black
Hi Kellie, I feel like I've been knowing you all my Lupie Life. Your blogs are so on point. Keep on sharing!
Victoria Sinclair
Well this my 1st time on this blog. Thanks for the effort it takes to keep something like this going. I hadn't been online for about 1 yr but I'm back and will share when I feel well enough. Everything I've read so far is true from the physical to the emotional toll this disease takes on all of us from one degree or another. Thanks for all the shared stories. Rock on Lupie sisters rock on!
Kellie McRae
Hi Victoria, welcome to the blog. I appreciate you taking the time to read what we share as well as comment. I hope you are having more good days than bad and I hope to see you here regularly.
Charlene
Hi im new to this blog. I can relate to everything. This joint pains,tiredness, fogginess in head where im forgetfull all the time
. this constant flu, my chest that doesnt want to clear my jaw line this painfull. The list jus go on. Thant u for your blog.
Suzanne Gratcyk
Yes I get the brain fog it's so frustrating, today I can barely walk but I'm at work I'm a,warrior fighter, I never give up,the tears come out onowwhere,can be embarrasseing,for me I just it's allgeries some days, out of the blue my emotions,
Suzanne Gratcyk
I pretend it my allgeries so I don't get embarrassed,when tears come out,out of the blue,
Kellie McRae
Suzanne, do you think it would be better to tell them that you are battling an incurable disease when the tears come out of nowhere? I know this thing really does take an emotional toll and you must do what you feel is best but you didn't ask for this so I think people may be a bit more compassionate than you think. You aren't asking for sympathy, you're still working and fighting but who wouldn't cry with what we deal with daily? Just wondering if you would find it less embarrassing if people knew what you were dealing with, there is a lot more awareness these days and I can tell you that when I went "public" with my disease, there were people who came out of the woodwork that I'd known for years who admitted they too were battling. I also had people ask me about symptoms and were able to talk to their doctors only to find out that they were battling autoimmune issues as well and that was because I shared openly. You may be able to make a difference in the lives of others by simply saying, I have an autoimmune issue I'm fighting, please excuse the tears.
Sophie Winters
I’m 54 and I’ve had Lupus for 37 years. Thank God I was diagnosed very quickly because soon after I almost died. On three more occasions I was at deaths door. I just was hooked up to permanent bag for my bladder. My legs hips and butt ox are all extremely weak. I have Dysmotility which is where my esophagus cannot push the food all the way down. The lupus is attacking my muscles. This is just a small part of the devastation that Lupus has played in my life
Kellie McRae
Hi Sophie, when I hear from people who have been battling as long as you, my heart just breaks. I am glad they figured you out early. I had a cousin who died about 30 years ago because they could not figure out what was wrong with her. So many people take this disease for granted, more and more people speaking out is something that I hope will help the medical professionals find new ways to short circuit this thing. I try to encourage myself and others and it is not easy when I hear stories like yours. I pray you find comfort and that you have more good days than bad. After 37 years, I'm sure you can tell some tales and are filled with tons of knowledge. Thank you for being willing to share.