Life After Lupus (5 Tips for Management Following a Diagnosis)

I remember sitting across from my rheumatologist 7 years ago and hearing her say that my test results were consistent with what she sees in Lupus patients. Lupus? An autoimmune disease where the body basically becomes confused and begins to attack itself. Okay, so how do we cure this? There currently isn’t a cure for Lupus. It took quite some time for me to process that last line. This thing called Lupus was stuck with me now…a part of me and my everyday life. I wouldn’t wake or sleep without it, and according to my physician, I never would.

Learning to manage everyday life after a diagnoses is something that takes time and patience from both the patient and the individuals in their life. This post is intended to encourage those who have been recently diagnosed as well as to provide a few tips for management of symptoms. Please be sure to consult your physician before making any changes and/or decisions in regard to your health regimen–this is extremely important! I hope that my words and experience help to jump start the conversations that you have with friends, family, and physicians as you begin your journey.

Acceptance

When I was first diagnosed, I had major denial. I was very reluctant to the suggestions that my doctor gave me, I would take my medication but do so inconsistently, and refused to believe that my diagnosis was permanent. This made it extremely difficult for my rheumatologist to treat me and get my Lupus under wraps. While I am still praying and believing God for healing, I have accepted what the current state of my health is and choose to take an active part in working with my doctor to address it. Proper treatment can not come without acceptance…

Develop a Treatment Plan

This can be very challenging because it requires a lot of trial and error. Remember, every patient is different and that means that every patient’s Lupus is different as well. Working with your doctor to determine which medications work for you is crucial to making your everyday life as comfortable and manageable as possible. I personally have gone through several trials of medications that worked for a time period and then had to be removed from my regimen because the side effects just made everything worse. There will definitely be moments of heightened frustration, but this is when your resilience will kick in and you’ll keep at it!

Visit Specialists

I HATED (and still hate) this part! Several times each year, I am required to see a number of specialists to check the functions of my major organs and/or any parts of my body that may be effected by my Lupus or medication. For me, this includes a rheumatologist (joints), nephrologist (kidneys), pulmonologist (lungs), hematologist (blood), cardiologist (heart), dermatologist (skin), and ophthalmologist (eyes). As frustrating and time consuming as this can be, I have learned the hard way that working hard to prevent a flare is much better than working hard to remediate a really bad flare. Asking your rheumatologist or primary care doctor for referrals of quality specialists can help eliminate the stress associated with scheduling.

Diet

I know I’ve discussed this several times in my previous posts, but I can not reiterate enough, how important maintaining a healthy diet is to managing Lupus. Simply staying away from certain foods can improve symptoms and reduce the risk of flaring. Start small–maybe cutting fast food is the first step?! Doing research and determining what works for you (with approval from your physician) will greatly impact your comfort level in the long run!

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Self-Care

In addition to eating well, being sure to take time to care for yourself is crucial to your physical health. Daily exercise, staying out of the sun, and taking naps (if possible) throughout the day, are just a few of the implementations that can improve your quality of life. Here are a few more:

  • Limit tiring activities
  • Get a minimum of 8 hours of sleep each night (some patients need up to 12 hours each night)
  • Practice relaxation techniques such as meditation, yoga, and guided imagery to keep your body as calm as possible
  • Keep your daily schedule as simple as possible
  • Delegate tasks to others and be open to receiving assistance
  • Take breaks from your usual schedule and consider working less hours throughout the week

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If you know anyone suffering with Lupus and/or any other “Invisible Disease”, please feel free to share with them directly!

Copyright ©2017 Joezette Joseph. All Rights Reserved.

39 thoughts on “Life After Lupus (5 Tips for Management Following a Diagnosis)”

  1. Limit tiring activities
    Get a minimum of 8 hours of sleep each night (some patients need up to 12 hours each night)
    Practice relaxation techniques such as meditation, yoga, and guided imagery to keep your body as calm as possible
    Keep your daily schedule as simple as possible
    Delegate tasks to others and be open to receiving assistance
    Take breaks from your usual schedule and consider working less hours throughout the week

    Fantastic advice. I do all of these but I hadnt realised why! Just this morning I was feeling a bit guilty sleeping until 08.AM?
    After being out at my meditation group yesterday evening, and having had help with transport and shopping yesterday, it was still a tiring day.

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    1. Thank you for the well wishes❤️ It’s back to “normal” now, but I still wish it was better. I don’t even really know what normal is anymore, but I continue to remind myself that things could always be worse–I have life!

      Liked by 1 person

  2. I was diagnosed with Systemic Scleroderma ( an auto-immune disease )19 years ago. It developed quickly at first and I was in real difficulty. Then I was diagnosed with colorectal cancer. Faith held me together during that time. I had surgery for the cancer and I am still here 17 years later. The other extraordinary thing is that the scleroderma went into remission and now I only have very minor symptoms. I still go to the Scleroderma clinic every year. They are hoping that they will find a blood test or something to test me for as they believe that somewhere in me is the answer to this disease. I hope they find it before I pass on. Even the doctors have said my remission is a miracle. I pray that this miracle can be found so it can help others. I admire your courage and have enjoyed reading some of your posts. Best wishes!

    Liked by 1 person

    1. Hi Anne! What a testimony!! Hopefully things workout and they’re able to use you to find a cure or at least alternative treatment options for other patients: I’m so happy to hear that your condition is in remission–that’s amazing! Thank you for your kind words and for reading my writing. Best wishes to you as well–please keep in touch!!

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  3. Hi Joezette! your tips for management are great and I can attest to the benefits, having rheumatoid arthritis myself. I am always in search of alternatives to the toxic meds, and my current approach is exploring ayurvedic medicine which has the right balance of a lot of things I have tried and tested on an ad hoc basis in the past (diet, meditation, yoga etc). Thanks for visiting and subscribing to my blog- I like the look of yours and will subscribe too 🙂

    Liked by 1 person

    1. Hi! Thank you so much! I’ve never heard of ayurvedic medicine but I am definitely intrigued and will do my research. Do you feel that it’s effective? These diseases give you so many ups and downs, sometimes I don’t remember how certain things made me feel! Thanks again for reading and subscribing!:D

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      1. Yes, I feel it is but it takes time- it’s a lifestyle change rather than a quick fix. I’m still on the regular drugs in the meantime but long term plan is to get off it as I have managed to do for a couple of years in the past until pregnancy brought on a flare. Yes- ups and downs for sure. Best of luck returning to and maintaining good health 😊

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      2. Was kidding 😂 i started reading your brain fog post and the penny dropped- omg- I totally have that too and turns out it is a thing with rheumatoid arthritis too. I just thought it was me or stress, although about the later is a culprit for many thimgs. About to nap but I’ll read the rest later (case in point- i can’t focus long enough to finish your post) 😂

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  4. Hi Joezette! I love this post. It really can apply to other “invisible diseases,” as you put it, like epilepsy in my case (well it’s usually invisible anyway). Some days it is literally impossible to get out of bed, of course, but on many occasions, it’s just hard to see the point in trying to do anything that day. I truly believe that without reaching out for help as you said plus finding a routine that works for me (including a whole lot of talks with God), I would not be able to function. Thank you for writing this.

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    1. Hi!!! I’m so glad to hear that you were able to relate even though we have different diagnoses! Unfortunately, I too know that morning feeling all too well. It’s insane how much you learn over time and continue to learn each day. Those daily talks with God are literally what carries me! Thank you so much for reading and please Lee in touch! I followed you as well and look forward to reading your future posts!🤗

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  5. I know two people who suffer with Lupus. One has chosen to seek joy and pleasure in all she does or can do. The other sadly is very bitter. I have recently connected them a year ago and it is like night and day as the spend their time doing much together and have become a great support as they carry on in the journey… well written…

    Hugs from Alberta

    Liked by 1 person

  6. Wow you are amazing Queen! My mom has had lupus for some time now, she’s 60, and BEAUTIFUL, just like you! I can’t wait to show her your blog and have her gain from it! Thank you so much for sharing your journey! I can’t wait to read future posts… and past ones too 🙂

    Liked by 1 person

  7. Thank you for sharing this information with us, Jozette. I don’t have Lupus but I know many people do. It’s important to share what we know so that others can learn from our trials and have an easier path.

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