Lifestyle

Post: My Not so Perfect Life !

I recently listened to My Not so Perfect Life by a favorite author, Sophie Kinsella on Audible.  I am a fan of hers and it inspired me to write this post about my illness, which many of you know about. There is nothing chic or glamorous about this post, just real talk. I hope I do a bit of good by sharing.

patient with relapsing polychondritis

My life is wonderfully Instagramable , but also very imperfect.

I have an autoimmune disease that is rare and serious called Relapsing Polychonditits.  You can read about here in Wikipedia.  I don’t like to dwell on being ill, in fact I started my blog to help me cope, as a sort of “picture myself well” strategy. In the featured photo, I am bundled up , feeling chilled and achy, with no make up, and terrible indoor lighting.

My disease is serious, but I  am fairly stable with good life-style habits, and some heavy hitters as far as medication goes. One of those medications is corticosteroids, not the kinds of steroids that builds up muscle that athletes use. In fact this one leads to deterioration of muscle, tendons and fascia, soft bones,  insomnia and mood swings.

When I was diagnosed and put on a high dose Prednisone, and injectable Methrotrexate a mild chemo drug. I asked how to keep from getting sick. My doctor cut to the chase; avoid people . I am a people person, so of course I can not follow this, but I have adapted my life to expose myself to less germs.  Mostly, I travel less, and am careful. I keep my hands in my pockets. I have mastered the air kiss!

You see here me looking well , healthy and younger than my years. That is good! I do not want pity. In fact, I am a lucky person, filled with gratitude. Post after post, I look like the picture of health and it is an interesting contradiction. One that I cling to. My not so perfect life is real, and I am okay with that. We all have something to deal with.

I will tell you that spending time not dwelling on my disease,  and being outside looking well,  has an effective,” fake it till you make it”  effect. My medications are  the drivers of my stable health, but this approach is a good supplement. Appropriate expectations are necessary with aging and illness, and it has taken me decades to come to terms with what I can,  and can not do.

I know that I can trust my body and listen well, I have learned to think like a doctor, as well. I can advocate for myself. I have a great team of doctors that I see,  and I trust them. I think I have 10 to 20 labels that end in -itis.

I was hoping to learn French when  I was diagnosed, but instead I became conversant in medical-ease. I can write like a doctor, and am fluent in their language. I can read what they read, not quite as well, but proficiently enough,  and that helps level the playing field. I know what I know, and more importantly, I know what I do not know. I understand  what we currently are not able to know,  that medical science is a shifting, drifting thing; a consensus of knowledge that is ever changing.

I also want to share some health tips that will help you too. With the weather fluctuating so wildly, we are all prone to flu and colds.  One of the best health tips is to use a good facial steamer, not for your skin, but for your airways.  This one is by Mabis and is available on amazon. Keeping your mucous membranes healthy is key,  and that means hydrated! This little steamer packs a punch, steam wise! Using it regularly is protective, especially in winter .

I add essential oils, and there is evidence that they are beneficial. I had a touch of flu I was fighting, and I used the steam fortified with tea tree oil,  and orange oil, and I did not get my usual bronchial infection, which with my disease is quite serious. I also want to recommend using Google Scholar;  it is fact filled website more geared for academics and medical professionals, so make sure you use it in conjunction with your doctor. This site has helped me understand much about my disease and the medications I use. From Google Scholar is an article about tea tree oil, that you can read.

Since the flu is viral, antibiotics do not help! Overuse of antibiotics is a trend that is leading to serious health consequences, LIKE ANTIBIOTIC RESISTANCE. Overuse of antibiotics is harmful to us as individuals,  and even more dangerous to all of us,  as a population. 

I was happy to know that the steam helps me, and green juices, filled with fresh phytochemicals, and ginger helps too. I drink a lot of filtered water, knowing that hydration is key to flu prevention  . Good nutrition, probiotics, and simple exercise helps. Simply walking on a treadmill, for 55 minutes 4 times a week has been beneficial.

My not so perfect life means that I can not travel comfortably. I recently missed a wonderful family vacation and that frankly was a bummer. Below is a shot from the  island my family traveled to. My not so perfect life means that I have to be hypervigilant and proactive, that a busy life is often interrupted with sick days and days at the doctor’s.  I walk instead of taking the subway during flu season and wash my hands often. I depend on hearing aids, and can no longer read books comfortably with vision issues.

It is a scary time to be immune suppressed. Well I guess it is a scary time, period!

island sunset

NYFW is coming up, so I have to plan and make sure I do not overdo. I also focus on the good things my life is made up of and there are so many. My wonderful family is first and foremost. My lifelong friends, and new ones too, add so much richness to my life and provide me with a tight support system.

My daughter, is currently abroad for work and I get photos daily of her wonderful trip. I share a cool shot below. Yes, I can live a bit vicariously through her, and that is fine, too. My son is also recently engaged to the loveliest woman , and I could not be more proud of my adult children. And can I just say that I love diamond shopping!

I want to thank each and every one of my readers for being so kind to me recently, and also when I lost my pet Lucy. I am, as always, ever grateful .

lipstick photo

I am sure my not so perfect life is one you can relate to. How is your life imperfect? What strategies do you employ to help you in this strange and wondrous  journey of life?

city stylethe elle diaries

39 thoughts on “Post: My Not so Perfect Life !

  1. What an incredible story, and I love that you’ve taken the bull by the horns and taken responsibility for your health Elle. One thing I learned from an old friend was you have to be your own advocate, and I love these tips you’ve shared!!
    XOXO
    Jodie
    http://www.jtouchofstyle.com

    1. Thank you Jodie! I appreciate your kind words. I think it is important for every person to be an advocate for themselves. Have a great week!
      ❤️, Elle

  2. You are so right in everything you say. And I applaud you for being such a strong and wise woman. Your life is far from easy but you look at the positive sides, try and ignore the negative sides as much as possible. An attitude I am sure, will benefit you and the ones around you mostly,
    Now… the amazing thing, you are bundled up, feeling chilled and achy, with no make up, and took the photo with terrible indoor lighting. Yet, you look so beautiful. Which means you are beautiful without any make-up etc. That is a big advantage. Another one to add to the positive side of your life.
    Greetje

    1. Thanks you most sincerely for your lovely words of support.
      I am glad that I do tend to look at the positive side of life. It has helped me enormously!
      I was hesitant to post that photo with the scrunchie in my hair, pilling sweater, awful light and no makeup. I am surprised you think that I look good in that photo. But I thank you nonetheless !
      ❤️ Elle

      1. Thank you, I know you always mean what you say and I am flattered. Mostly, thought, I am grateful and humbled by your friendship! ❤️

  3. You are an incredible tower of strength looking at the positive in such an uncertain time with your health. I’m sure learning medical ease . learning and speaking to doctors on an even playing field has most certainly Been a strong factor keeping you as healthy as possible
    & looking well even when you sometimes /often aren’t.
    I applaud your bravery, your honesty and most of all your strength ,what an inspiration you are. Focusing on the positive,looking at the beauty you find in fashion and in life has certainly served you well .And agree, you look beautiful under all the circumstances.
    Xo

    1. Thanks so very much for those lovely heartfelt words!
      That means a lot to me. I am lucky to have a positive attitude. And I also have a great family and friends to support me. That counts the most.
      ❤️ Elle

  4. Though you are but tiny your personal strength is monumental. Those with serious autoimmune diseases fight every day. Your positive outlook and refusal to be defined by your illness is inspirational.

    (((( Elle )))))

    Suzanne

    1. I do indeed try ! I got some very strange looks from strangers today, in my building as I was heading off to the gym. I was drinking a kale juice concoction and they could not believe I was drinking anything so green it looked black. I do try and do whatever I can with my lifestyle habits.
      Lol. We try!
      Thanks for your sweet words
      ❤️, Elle

    1. Yes it is interesting. We all have completely different visions of what a perfect life is. Everything in life is about expectations. Thank you very much for this kind and thoughtful reply.
      ❤️, Elle

    1. Thanks Patti,
      We all have something to deal with!
      I am glad I have the support that I do. I truly consider myself lucky.
      ❤️, Elle

  5. Hi Elle, although I knew you had an illness, I did not know the extent of it, other than to know that we have many things in common. i could very much relate to what you wrote. Fake it until you make it, is so true! There are days i feel as if i can’t go to an outing or see someone at my house, but I make an effort to if I can, as the change in mindset can help and if I dwell on the disease, it can feel worse. We both started a blog to help as a detterant from our illness, and as a creative pastime. I love how reflective you are and I too have found family and all I am grateful for on my mind more and more.
    I so understand being proactive with your health and the ability to read medical journals, think like a doctor etc. i am the same! I read technial books when I was diagnosed as I feel you need a handle on what is going on within your body and knowledge is very important for getting the right care. I think you are such a beautiful, elegant lady, and friend. i love the use of essential oils and other things that help as well. I use Epsom salts for my baths as they help with muscle pain. i am glad you have a good team of doctors for the best care.
    take care!
    jess xx
    http://www.elegantlydressedandstylish.com

    1. Thanks dear friend.
      I know you suffer too from your illness.
      I agreed too, Epson salts are a good thing.I am always deficient in magnesium because of my use of corticosteroids. Ouch to muscle pain and spasms.
      You are an inspiration as well.
      ❤️, Elle

  6. No ones life is perfect whatever the issue, Is how we conquer it and move ahead living our life’s the best we can.

  7. Dear Elle, after all, what’s perfect? What’s the meaning of perfection? I think you are perfect – a perfect girl, perfect wife and mother, perfect friend and I’d love to know you – one day, who knows! You are always so considerate and kind, and this is perfect. Perfection is different from person to person. I knew you had an auto immune illness, but I didn’t know which one. Now I do and I think you are even more fantastic – brave, courageous, lovely and honest. This is what we need these days, with people faking lives just to show off (lies) 🙂 You are so right, as a girl who loves people, walk and avoid the subway – yes, flu is everywhere, we don’t need it 🙂 Travel when possible, no one said that traveling is a must. As for your question, for me I think my life is good, and like you, who had the same, I don’t want to make it the tone of my life, but you know I lost my parents in a few months from each other a few years ago. A bit later, my half-brother and one of my mother’s best friend. Like you, my blog raise me from the ashes and anyway, we do have a lot to be grateful for – cheers for that, dear Elle! Hope you have a beautiful week, as beautiful as you are!
    DenisesPlanet.com

    1. Yes, I am so sorry about those terrible losses. I do admire your strength, beauty and wisdom. I would hope to meet you one day,
      Blogging is a great way to communicate!
      ❤️, Elle

  8. Elle, thank you for explaining your health issues – kudos to you on facing your disease, learning to speak medicalese and being in charge of how you live your life. I also adhere to the “fake till you make it” tenet for getting through. I deal with anxiety quite a lot and stress does a real number on me mentally. I don’t take any medication, but I do really make an effort to care for my mental health and do things that help me get centred again. Hugs to you, my dear. (gentle ones)

    1. I know you do Sheila, and I am sorry.
      Maybe we creatives are more sensitive.
      Yes stress is a bear !
      Take it easy, reach out if you feel like it. I am here.
      ❤️, Elle

  9. Elle, this is such an amazing post! And like you said, while we can put the image of perfection on social media, we all have our own personal struggles to deal with…some are more serious and scary than others, but all are real. I adore your attitude towards your illness and your assertiveness in learning about it, doing what is necessary, advocating for yourself, and helping others by sharing your story. We do not need to let our illnesses dictate who we are, we merely need to adjust our lifestyles accordingly so we can be the absolute most fabulous versions of ourselves…which is clearly how you live your life! I am so inspired by you, your story, your style, and your writing! Stay fabulous, my friend!

    Shelbee
    http://www.shelbeeontheedge.com

    1. Thanks sweet friend.
      Perfectly said, we should aim to be the best version of ourselves. Wise words. Have a wonderful week. Thank you so much for reading my blog .
      ❤️ Elle

  10. Wow, Elle, I had no idea. I admire you for your positive attitude. That is something very valuable and helpful, yet not everyone masters (or want to master) that skill. I think you are a great woman doing so: taking responsibility and looking at what is good in your life and by doing so, inspiring others to do so too. I think that is something wonderful. Thank you for this warmheartedly blogpost. Love, Lieske

    1. Thanks Lieske!
      That was very sweet and I am very pleased to read your kind words. I am very glad that the response to my post has been supportive. I didn’t want anyone to feel sorry for me as I feel very fortunate. Have a wonderful week.
      ❤️ Elle

  11. Elle, your posts shine with life, joy, energy. Whether you have health issues or not, this positivity is abundant. Your work-arounds to dealing with your challenges are creative and practical at the same time. I also hope that people in North America will some day take to the habit of wearing masks in public when they are ill, like many countries in Asia. This is so practical and polite, I don’t know why it is taking so long to catch on here. I drew a series of masks with faces on them that I wear when I’m out when I have something – there are so many people who are vulnerable. I am sorry to hear about your illness, and I raise a glass to you for more good days ahead. You inspire.

    1. Yes to masks, YES to you, insightful and outstanding. I thank you very much for being in my cyberspace! ❤️❤️❤️. And it is you who inspires 🙏🏼❗️

  12. Dear Elle,

    This post of yours has resonated with me on so many levels. I too, have an Auto Immune disease, RA. I was diagnosed last Spring and I am still coming to terms with the limitations it has put in my daily path. I am hopeful that we caught this in its infancy, but I still have so many questions about the balance between the low dose of Methotrexate I am currently taking and all the modifications to diet and lifestyle I have made.
    I am most appreciative of all the tips you shared in this post regarding facial steamers and most importantly, Google Scholar. I have already been there to take a look. While it is very tedious reading, I feel certain that it will provide more information for my long list of questions.

    I began my Blog last April, before I had been diagnosed. It has been very encouraging for me to write and post about all the beauty I see around me on a daily basis. Until this moment, I couldn’t have given you a definitive reason for getting that blog started. Yet it seems to touch my heart truthfully at this moment that I did it to focus on all the positive things in my World.

    Thank you for sharing your World 🌎

    Diana Amato

    1. Sounds like we have a lot in common. I am so glad you caught this early. Beauty and friendship helps so much. I will see you in cyberspace! You can always reach out to me via email, about meds and so forth
      ❤️❤️

  13. My dear Elle, you are one of the kindest, loveliest people that I met in Bloglandia, and I am very thankful for getting to know you! In “real life” we might have never intersect, so it’s wonderful to have the opportunity to connect over the Internet with such a beautiful woman, human being and soul. You are talented, eloquent, warm, intelligent and loving. And definitely very strong and wise – it does take a lot of strength and wisdom to deal with your health issues, and starting a blog as a part of it is a brilliant idea! I think I started my blog for a somewhat similar reason, when I went through a very deep disappointment, I wanted to see myself happy, I wanted to see life in a positive way- and it works!

    I love the way Dr Wayne Dyer put it, “We are not human beings in search of a spiritual experience. We are spiritual beings emersed in a human experience.” When you look at life from the spiritual point of view, everything has a deeper meaning – it is, to me, the most beautiful and profound point of view. I don’t think anyone has a perfect life, but life is precious, with all its contrasts. And I think from time to time, we all need to remind ourselves that, when we are feeling low or dealing with challenges. Like you, I am most grateful for my amazing family and all the love and support that I get. But there is also love that we need to give to ourselves, spiritual love – be kind to ourselves, encouraging to ourselves, comforting to ourselves. And it’s a never ending process, to learn this skill. I recently read Care of the Soul by Thomas Moore – it is one of most fascinating books that I’ve ever read, in the way that it is full of paradox and at the same time ring so true. I don’t know whether you’ve read it or not, but the main message is that every experience we have is first of all is a soul experience, and has a deep, profound meaning. Unfortunately in modern world, it is a forgotten message, but some people knew this wisdom long before us, and we can learn or re-learn it too.

    Lots of love!

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