Remaining Hopeful Is Hard, but I’m Trying

Remaining Hopeful Is Hard, but I’m Trying
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I often remind myself that worrying isn’t helpful, especially because stress is a lupus trigger.

In my past life as a well person, I always thought I handled stress masterfully. But after being diagnosed with lupus, I notice that my biggest flares happen when I experience high stress levels. Sadly, stressful situations now are exacerbated by additional worry that I will have a bad flare, which may result in a hospitalization.

After a recent hospital stay, most of my medications were changed, and things looked promising. Family members always are the first to be optimistic, while I usually wait for the proverbial other shoe to drop. I have learned that the brand of lupus my body seems to be battling is an overachiever and manages to convert many of my victories into challenges.

When I left the rehabilitation center I was sent to in March, I was hopeful the new treatments would get me on a path of adding more quality to my life. I was exercising. The coughing that plagued me last year and caused me to become severely malnourished was contained. And I even had less pain.

But suddenly, the pain and coughing are back. And with every cough comes the fear that my meal will follow.

It took an entire year for doctors to figure out the type of infection in my esophagus, lungs, and stomach that was causing the cough. While we have a baseline now, my concern is what is causing this to happen again? How can I stop it from becoming a recurring problem?

It is hard to be hopeful when treatments that seemed promising are short-lived. My goal is to get to the doctor’s office, look at the records from the past year, and hopefully prevent a repeat of the last 12 months. I often tell myself and others not to worry about something until a definitive answer arrives, but it’s difficult to follow my own advice.

While convincing myself that a health issue is resolved can create happiness, the nature of our illness dictates that something else may rear its ugly head in the future. It’s hard to be hopeful when many of the same things keep recurring over time, when the issue seemed to have been resolved.

I am a self-proclaimed joy junkie, and I try to keep my head and heart clear of stress if possible. But for the first time in a long time, I am looking at something that is not yet a big problem through the “what if” filter.

Last year, my cough began as a simple annoyance, but by the end of the year, it held me prisoner. I’ve shared a few times that 2019 was by far one of the most difficult years I have experienced since my 2016 diagnosis, both mentally and physically.

This year has started off with one of the longest hospital stays since my diagnosis, and then the world literally shut down because of the pandemic. It has been challenging for me and others to remain hopeful and optimistic. My goal is to erase the worry about things that aren’t factual, avoid as much negative news as possible, and do my best to find joy in each day.

I don’t want anyone to think I am always happy and joyful, and that I don’t worry. I am experiencing a lot of unrest, not just in the world, but also in my personal space. I am doing the best I can to remain hopeful. I hope you are doing your best as well.

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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.

Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.
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Kellie “Hurricane” McRae has been dubbed a force of nature. She’s the mother of 2 adults who know she is a force to be reckoned with. Diagnosed with Lupus in February 2016 after multiple hospital stays that had her saying her goodbyes to her family & writing her will she became a very vocal advocate. She has openly shared via Periscope what she calls coping while scoping and has helped many who got a fresh diagnosis as well as those who have been battling for a while. Kellie has taken on the idea that food is medicine and shares frequently the chemical ingredients found in some foods and she also shares recipe’s for great food. Food is medicine is part of her philosophy. After Lupus forced her to walk away from a 17 year career in Real Estate, she began an online business helping others go from “Coping to Cash flow” because not everyone gets approved for disability and still need to pay bills despite the unpredicatable issues that Lupus causes.

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9 comments

  1. Aimïeh says:

    Dear Kellie,
    I am sorry to hear about the ups and downs. I myself experienced them, and remember being as angry as an exploding bomb, because of fear, worry, depression, hopelessness. Then when I’m ok, the sun shines again mentally.
    My parents take care of me, I am thankful. My husband is sympathetic, but I don’t think he knows what to do. I cope in my own ways, financially, mentally, emotionally and avoid western medication as much as I can. I sought alternative medicine, and I keep finding and finding and looking. The universe will give you answers. I found some good approaches. Wish I can share them with you. Prayers to you.

    • Kellie McRae says:

      Hi Aimïeh, thank you for sharing your experience. It really is a mental roller coaster but trying to stay optimistic is our best bet. I look back at what I’ve already been through with regard to lupus and I truly do feel some days that I am awesome and when I feel like I just can’t do this anymore, I try to remember that I’ve been doing it and I can keep doing it. You and I both know, its definitely not easy but glad to hear you push forward and have people who even if they can’t fully understand, still support you.

  2. Darlene McIntosh says:

    Dear Kellie, I cannot tell you how I look forward to your articles. I have lupus am deaf, have RA and asthma.I am on steroid infusions every 3 wks, immunosuppressive drugs every day and prednisone. Your letters give me hope. God Bless you Kellie

    • Kellie McRae says:

      Aww Darlene, you’re making me blush 🙂 Thank you for your kind words and for sharing a piece of you with me. Sending you comforting vibes because we could surely use it most days.

      • Dear Kellie,
        I look forward to reading your articles. I am so sorry to hear you had to have a long hospital stay.
        I have been having a chronic cough , along with not being able to keep my food when I have what I call my coughing spells. Chest xrays are always normal. I ask doctor could it be caused by the Lupus. He says no. In fact all the symptoms I have according to him are not the result of Lupus. So confusing.
        Thinks for sharing your experience. I will relate this to my doctor. Thsnks for being a strong woman and an encouragement to all.

        • Kellie McRae says:

          Hi Gloria, nothing fun about these coughing spells that cause us to lose our meals. I hope they find a solution for you. Thank you for reading my articles, it is truly appreciated. I hope that what I shared will at least give your doctors a jumping off point to learning more about what may be happening with you. Sending you comforting vibes and got my fingers, toes and eyes crossed that they will come up with something helpful. 🙂

  3. Dawnmarie Wiley says:

    Dear Kellie, I was diagnosed with Lupus 11 years ago after being mis-diagnosed for many years. It was a friend that pushed me to go see her dermotolgist because of an ongoing rash I had. After my biopsy it came back that I had SLE. I have dealt with the highs and lows but honestly so much else has been happening to me (very high blood pressure,High heart rate, loss of appetite and having a very short fuse) I feel I am puhing my family away. I have now started with the heavy cough (that does make me lose my lunch)I just took my blood pressure and it is 175/118 heartrate 123. I’m tired of taking all of these medications and I fear that I am just giving up. I recently lost my job and my only insurance is Medicaid, so now I have to go through Community Health and get all new docotrs. Something that is completely stressing me out even more. My seizures are worse and I honestly feel the end is near. Any advice on how I can cope with my family and not always seem like I am in a horrible mood, even though I am in constant pain. I love my family very much.Me & my husband just got married 7/25/20 and he doesn’t understand my disease which sometimes feels hurtful and unsympathetic. I don’t want anyone feeling sorry for me, I just want to make my family not feel hateful towards me. I want them to remember the loving side and not this hateful, hurtful person I feel like I am becoming!!!! I have even gone as far as to look into doctor assisted suicide because I DON’T want to put my family through this. Could this really be the end??? This cough and chest pain is unbearable and I don’t want to be a burden to anyone. Anything you can say, words of encouragement. My family is my readon to fight but I feel like I have no more fight left in me. You inspire me. With much love and gratitude for even reading this. Prayers and Love, Dawnmarie Wiley

    • Kellie McRae says:

      hi Dawnmarie, my apologies for the time it took to respond to this. I have spent the last 2 days traveling. I think at some point we all feel as if we are giving up and then something will happen to make us continue to fight. I looked at your wedding date and thought how wonderful it is that with all you have going on, someone decided they would love you enough to marry you. That’s saying a lot in this day and age for sure. We live in times where marriages are expected to be easy and we know there is nothing easy about the life we live. I am the mom of 2 adult children and one thing they have expressed to me is that while we don’t really know how to navigate being chronically ill, they don’t know how to navigate having a chronically ill person that they really love. I was feeling so much mental instability and didn’t realize I was taking it out on them. I had to sit down with my family and establish some boundaries. Boundaries to keep them safe and me as well. I understand you don’t want to put your family through this but as long as they love you, that’s not a choice you get to make. All you can do is the best you can. Be honest with them and yourself. It’s hard, sometimes you feel whatever you’re feeling and when they express those feelings to you, try not to be defensive and feel it’s personal. I know, I was projecting but while they may not understand, if you don’t share with them what is going on in a constructive way, not one where you are telling them they don’t understand your pain and your fear but where you are simply saying, I’m in pain, I’m scared and I don’t always know how to handle that, being honest will go a long way in helping them as well. Often when someone is experiencing things, we don’t think about the other aspects of what they may also feel. We hear they are in pain, we can relate to pain but we don’t understand the fear that comes with the pain, the uncertainty of what that pain could mean and the mental concern that the pain may never stop, and the questions that brings. You have to explain that to your family. I sincerely hope this helps.

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