A Different Kind of Connection
The lupus life can feel seriously lonely. Supporters surround me, but I know they can’t understand the things I endure. Lupus can create a whole lot of problems, mentally and physically. A tiny symptom can become something serious. When serious flares strike, I fear that one of the many things wrecking my body will leave loved ones mourning.
We are dealing with a pandemic. It has consumed all news shows, social media, and websites on the planet. It’s difficult to get away from even if symptom free; there really is no escape without turning away from all media.
People speak out their fears every day. A person with a mere cough can be paralyzed by the fear of it evolving into something fiercer. I can’t speak for others in the autoimmune community but I feel like the world is getting a glimpse into my reality as an immunocompromised person. Because of this, I feel a different kind of connection with society. Honestly, some of what I feel is childish — kind of like, “Naa, naa, now you know what it feels like!” But the other part of me just really wants those people to be OK, both mentally and physically.
Isolation can create depression and anxiety. Admittedly, I miss getting a dose of “people energy.” Then again, many who battle something like lupus are better equipped to handle this than those without health issues. Before this outbreak, I was already teaching myself hobbies that help with anxiety and depression— things to do when I couldn’t get out for my people energy.
I am not afraid of this virus. My life was already masks, frequent handwashing, and sanitizing. My immune system constantly hums at a crazy frequency, so I take immunosuppressive medications that inhibit my ability to adequately fight off even a common cold. Colds and influenzas are just as dangerous to my body as COVID-19.
For a little while, the world gets a glimpse of what it is like to be immunocompromised … and they are not handling it well. The next time someone sends me a “cure” or tells me to exercise more or questions my diet, I will be all too happy to remind them of their inability to control this virus, and of how much fear they experienced. I know it sounds terrible that I would do that, but I often say that I’m nothing if not honest. The playing field is somewhat level. Perhaps now people will be more understanding of those with chronic illnesses once this is all said and done. I hope.
In the meantime, please practice good hygiene and stay away from people as best as you can. I know this isn’t easy but the faster we all cooperate, the sooner we can get our lives back. Let’s get there. I miss blowing bubbles in a park filled with laughing little people.
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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.
About the Author
Jan
Thank you so much for this column. I, too, have had an identical reaction. When this is “over” (if microorganisms “disappear”, which I doubt), you know people will have little memory of it and will be back to coughing on us, commenting negatively on a mask we wore (yes, this has happened to me in a grocery. I had to talk to management!), or otherwise acting clueless about autoimmune disease. You bet these practices that are new to everyone else, it seems, are not new at all to us.
Kellie McRae
I agree with you that things will eventually go back to normal, I think that the mask thing will either become well accepted or be a sad reminder to some of what the world just went through. No matter what, people will be ugly if given the right formula so the comments I shirk off...now the coughing lol I try to stay away from them just like when I get to coughing, they try to stay away from me. Folks may go back to the way it was but now we have a little ammo for when they try to make us feel weird for being worried about being sick, now you can just remind them of the pandemic of 2020.
Caroline
Hi Kellie I came across one of your posts through google, I’ve lost the weight too and wondered whether you ever regained it I feel it’s the muscle more than the fat, I too loved my curves. Your post made me feel less alone but non the less sad. I’m yet to be diagnosed or medicated but have 101 symptoms and from flicking through your posts I see the road is long. I do want to read them through though as you seem to have a great attitude. Please let me know if you have found a way to regain muscle, or build yourself back up, I started to do a squat challenge three days ago was big mistake in pain all day but you live and learn. Any advise would be much appreciated.
Kellie McRae
Hi Caroline, I hope you will continue to return to read more of what I share. As far as gaining weight back, I agree, it was mostly muscle for me as well. I have started to pick the weight up again, thank goodness. I know I will never be as curvy as I once was but I definitely found no joy in being 99 lbs. I was concerned I would not be able to exercise either BUT going into the rehab center showed me a proper way to do the exercises and I am happy to share with you. First off, leave behind the thought of doing things in the traditional way, partially because you don't have to be in a ton of pain to get the muscle to grow. Remember that slow and steady will also win the race. The first thing I did was to add fatty protein to my diet. It helps to not only feed the muscles I am trying to build but also helps me gain weight as well. Peanut butter is quite prevalent in my house now and I got some protein powder as well (I was reluctant but after some research and the help of the nutritionist at the hospital), I started using a vegan powder by a company called Orgain (not an endorsement, this is what I use, please research what is best for you). Then I started my exercise regimen. It's not impressive. I do 10 bicep curls, 10 tricep exercises, 10 squats, 10 each leg side raises, and 10 butt lifts (this is where you lay on your back, bend your knees and lift your behind off the surface). I was a little sore initially but as my body got a little stronger, I started increasing the counts. I also started doing squats when I washed my hands. I can tell you it takes me approximately 24 seconds to do 10 so I have thoroughly clean hands and I get in my workout. I don't have the energy to do this every day but I try to do something each day. I don't know if this will help you but it has done good things for both my body and my attitude. Usually a woman doesn't want to be told when weight gain is noticed, right now for me, when friends notice (we zoom sometimes), it makes me smile and they all know, I am doing what I currently refer to as the build a booty workshop. I hope this helps you build a booty too :-)
Caroline
Yes it does help. I know it sounds vain and I’m far from that but hair and bum seem to matter to me and it’s just tough initially, because I’m not medicated (labs are closed here) I feel like I’m helpless. I’m the healthiest person I know yet the “sickest” don’t even like that word maybe most infammed would be better like we’re so hot haha. Somebody in work before we finished up from the virus told me I’m the oldest young person they know (I was always so cold). Yes I have ordered some vegan protein and will look into that one, some contain alfalfa which I only realised after finishing the tub. I’ve also been taking collagen as my skin and well everything is dry and cold. I love that build a booty 😬 I’ve been calling it build a body and yes I relate to people noticing changes in me, I’ve been layering up but that can be uncomfortable but in fairness I do be so cold too plus I’ve lost muscle on my face also which is a bummer will have to invest in a good balaclava haha. Do you find your temperature sensitive leaning more to the cold. How have you found medication has improved your quantity of life if at all? What symptoms did you initially present with? Did you have Raynauds and Sjögren too? Also can you pinpoint anything that really brought it on strong? Is there anything you avoid food wise? Is keeping hydrated a struggle for you? I had some milk chocolate the past two days and I’m thinking is it that and not the exercise causing systemic pain it’s just so confusing for me as I’m sure it is for everyone trying to figure out how to adjust. Can you suggest anything for pain apart from NSAID’s while I’m waiting?I have GI issues as it is. I have the weirdest things pains in my underarms, the hairloss ☹️ Ear pain, breathlessness, palpitations just list goes on. I have a pain in my nose right now 🙄 it’s like I bounces around. I see you have your hair sleek 😉 did you cut it because of hairloss or convenience? Also do your muscle twitch as well as hurt. Thanks Kellie for this, I really mean it. I was swimming in a sea lost really looking for some answers before I came across your post 😢 I have your page bookmarked and will def go through all your musings I just struggle even mentally sometimes now to hold concentration but I really appreciate you answering me like this it’s the little things that actually make the most difference when you are feeling unsure and alone. I’m eating a banana and thinking some peanut butter on gluten free bread thanks for the tip, sometimes I wish I’d found and married a chef haha. 99 is very low what height are you and what are you at now? Thanks again Kellie, love and light 😘
Kellie McRae
Hi Caroline, Ok, let me see if I can answer your questions in order. The medication I am now on are the infusions along with the standard stuff that I think they give all of us. With the new medicine, I honestly think its the best I've had since this whole thing started many years ago. I still have pain and fatigue but have more days with better clarity so I can concentrate. Some days I wake up and no need for a nap until 3 or 4 pm, that is an improvement in my fatigue levels. Over all, I would say the medications I am on are helping. I definitely suffer from Raynauds, I tend to travel through my day with what I call my "adult bag" similar to toddler bag. In it there is usually a sweater, a fleece blanket, a headwrap (since as you put it, I"m "sleek") and a pillow for my boney backside.
I can't say what really brought it on strong because initially I just know that once it became aggressive, it was REALLY aggressive. One of my first major symptoms was the lining around my heart swelling. I thought I was having a heart attack. Food wise, I tend to stay away from garlic, alfalfa, eggplant, meat products and dairy (although sometimes cheese happens because it is evil and tastes like temptation) lol I usually pay for that. I also try to avoid bread, I like it but it does not like me very much. If anything will cause me to have to go back to bed for the rest of the day, having bread will be the culprit. As far as pain stuff, I honestly don't take anything. I try to find ways to focus on other stuff. I'm a bit of a control freak and I accepted that I have a "chronic" pain disease so if I was always trying to get rid of the pain, I would always be doing more harm to my body. Even when I am in the hospital, I have to be at a 12 pain wise to accept anything. My hair started falling out by the hand fulls, it was stressing me out. At the time that my hair was coming out, the doctors thought my brain was shutting my body down. I decided I could stress about something I could control or something I couldn't but not both so I shaved my head. It took some getting used to at first, I hid under headwraps but eventually I came out from under. I talked about this recently on my youtube channel. I get muscle spasms in my hands a lot, sometimes in my calves. I try to stretch every morning telling myself it will help (probably not true but it sounds good to me so I keep telling myself this) :-) I'm excited to no longer be 99 lbs. I'm 5'7 3/4 so for my height, 99 lbs. is a skeleton. I hope these answers help you, know that you are so not alone and if you find a single vegan chef who is really cute, tall and muscular, I'll take him and see if he cleans too!