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.
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!
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 .
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?