Harsh title? Match made the below Heaven quarters? Perhaps. What if – yes, I’m asking you – what if living a fashionable life while being diagnosed with an autoimmune disorder would be possible? Would you be interested in making this match a success?
Fashion and autoimmune disorders is so possible! I’m living proof – and I want to share that with you! I want us to come together and discuss, unload that heavy load off our chest, breathe out the heavy stuff and breathe in the wonderful stuff! Let’s dress ourselves with love! I know it’s hard! I’m fighting every day! And the fight will never end, I know! But we’re not alone and we can make it better, together we’re stronger, better!
My dear friends (old and new)! I’ve thought long and hard about this. Not about how to break the news to you, per se, but how I should manage the news, how I should dress it, pamper it and make it more ‘appealing’. As if… Some of you already know me and my recluse ways. -_^
I’ve been first diagnosed with an autoimmune disease when I was 14. Something easy and quite mild – vitiligo. For those unfamiliar with vitiligo – it affects the pigment producing cells of the skin. Basically you’re whitening out. So I’ve grown into a Dalmatian since I was a teenager (you can see my white patches around the eyes). It was ok, though. There was no pain, absolutely no other symptoms except the white patches. On my face, on my hands, on my legs… I cannot begin to tell you what that does in a teenager’s head, though – I was agonizing and dramatizing one day, happily bouncing up and down the other.
Don’t let the media use your insecurities to stop you from finding your style! You’re better and stronger than they want you to believe!
Different treatment methods were proposed to me and I think I’ve tried one too many. In 10 years I was so fed up with solar protection lotions and hats, ointments and experimental medication I’ve put a stop to it all and decided to live my life as it was. Four incredible children later (and 10 more years), some weird rashes appeared. First on my face, my hands, my torso, soon all my body was itching and I was a nervous wreck. That was 2 years ago.
Coincidentally, Stylefrizz had begun to slow down. My focus started shifting, gravitating more towards my personal life. Blood tests shown nothing wrong, nobody knew what to recommend to make me better. The rashes came back regardless of the medication.
I though it was the food. I thought it was my nail polish. I thought it was the air I was breathing. Everything and anything. Then I started taking out possible allergens from my food. Gluten was first.
And my rashes went away. More than one year everything was fine. My focus was slowly recovering and I started a new project (some of you are already familiar with it – Seasonails); although I was really dragging through the day, very tired and slow, nervous and desperately seeking answers. Then the rashes came back. Dry eyes, dry mouth followed, my knees felt awkwardly painful and some weird eczema appeared on my skin.
I went to the doctor, again. Performed all sorts of allergic tests to no avail. Until one amazing lady doctor recommended a certain test for my thyroid. It came back positive. More tests ensued. Halfway through the tests and doctors appointments (I have appointments through the following two months), I finally found peace.
Have you tried oversized clothing? It really changed my life!
After two and a half years. Peace. Yes, I still have itchy patches. Yes my eyes are dry and so is my mouth, even my nose is dry too. Sometimes my eyes hurt so much because of the dryness, I can’t keep them open and burst into tears just to feel some moisture. My knees still hurt and I have days I feel so tired, I would just sleep all day. I have days when my social anxiety is as such high levels, I can’t talk over the phone, let alone see people! I have days when my brain is so foggy, I feel like a walking disaster (I crashed the car while having one of those days).
After two and a half years I’m at peace with my body because I finally know I’m not crazy, I’m not making things up and I’m not bringing this upon myself with my negative thinking. My Doctor told me it could take years before I get diagnosed, but it looks like the early stages of Sjogren’s Syndrome.
It’s my turn to fight back! I’m fighting back with love and understanding. I understand my body and what it’s going through. I love my body and I want it to get better. I will definitely treat my body well, like a friend in need, not an enemy. I’ve been doing this wrong for so many years!
So I’m seeking friends. Friends who go through autoimmune disorders and yet manage to lead a fashionable, active existence. Let’s all come together, share and discuss our feelings. This is just my ‘intro’ in the matter. Tomorrow and furthermore (hopefully I won’t go brain foggy too soon again) I’ll tell you how my autoimmune diseases changed the way I dress, the way I style my hair, the makeup I use, the food I eat and my daily routine.
Please, feel free to contribute with your own experiences! I’m sharing mine, I’m not pretending to be an expert, just coming out with what I’ve learned going through my life as a woman, wife and mother with autoimmune disorders. I’m really thankful I have you to listen and share my thoughts and feelings and from now on, my daily struggles. Yes! I’m living with autoimmune diseases and I’m determined to make it a fabulous living! Will you join me?
Oh girl, I have tears in my eyes. How sad …
On one hand I am deeply deeply sorry this has happened to you ( Why do bad things happen to good people ? and all those unanswerable , pointless questions which come to mind in these situations… ). On the other hand I see how positive you are and it makes me “glad” you are ALREADY facing it with such aplomb, because this is the only way : STAYING POSITIVE ! a positive actitude does have influence on the body ( the mind /body connection) and then comes the shift to ” now that this has happened what shall I do about it ?” and how to benefit the most of it ?
You may think “oh it is easy to talk “… But believe me, I walk this walk every single day, for 12 years now. In 2004 I was diagnosed with Sezary’s Syndrome. I felt guilty ( I am jewish…), I felt disgusted, I felt isolated, helpless, I had nervous breakdowns, I think I went all those stages of disbelief /self sorrow/powerlessnes/ self hatred / stuck in the limbo / final acceptance. Only when I reached acceptance I started to manage to stay in a balanced and productive life.
Please understand that I am not trying to compare our sufferings. That would be absurd, there is no level of comparison , Each human being is unique with its unique story and I am a firm believer that we must learn from what was imposed to us.
You are brave, very corageous to open yourself here. From the bottom of my heart I wish you get all the help you need, be it medical information, be it psychological assistance or just a virtual friend on who you can openly talk about your feelings. You have my email address. Don’t hesitate to contact me for whatever you need. By the way, hubby is a physician. If you need orientation , although I am sure you are on the hands of excellent professionals, he will be pleased to offer it.
You just rocked my world! I was recently diagnosed with Sjorgens and I adore fashion! I can’t wait to read part 2. Please continue sharing.
Theodora and AJ! Thank you! For your words and especially for your support! Reacting to my story was everything I needed to keep me going! To know I’m not alone! That we’re not alone! TOgether we’ll find the strength to make this autoimmune disorder ruled life a beautiful, fashionable one!
Oh! Theodora, you! Such an amazing woman and you have to go through all this? No, I won’t compare, I just .. from what I read about your condition, I can only imagine what you must’ve felt! Yes, like you said – ‘glad’ that you reached that balance, that acceptance! I honestly feel that it’s the key to it all : accepting and living with the present. Not the ‘healthy’ past, not the ‘possibly worsening’ future, living every day and enjoying it like it is. Thank you for all the support you’re offering, it’s unspeakably beautiful!
AJ – keep close, I’ll be definitely sharing more and more! :* do share your troubles whenever you feel like it!
What you have described is so very comforting. To hear that another is suffering brings tears because I understand the struggle keenly, but I am also so strangely comforted by every detail you boldly share. I am grateful for your candid accounts.
The progression you describe is similar to my own experience.
Vitiligo when I was in college; I saw a “map of the world’ across my chest, reflected in the mirror as I tried on wedding dresses. Because I am fair, I could use sunscreen and cover the most susceptible parts of my skin, minimizing the discrepancies in pigmentation, for decades. A few years ago I began to react badly to the sun; it now causes rashes, neuropathy, fever and flares of symptoms in general. Booo. For a girl who lived and worked outdoors this would have been heartbreaking if my life had not already slowed down to a slow crawl.
When my hair and skin became severely dried I thought it was a phase of healing after major illness and surgery. I began to lose my voice. and my daily read alouds with my children became difficult; actually, I could not discern if I was too tired to speak or if I was out of breath because I had become deconditioned with illness. Singing was lost at that time as well. The sudden weight gain was disheartening and frightening but even this terrible symptom was eclipsed by my body’s inability to regulate temperature. I was both chilled and sweating enough to soak through clothing a dozen times a day. I felt like I was losing my mind. Finally, because my bloodwork was fairly normal, an endocrinologist diagnosed my sub clinically for thyroid disease and prescribed Synthroid.
I was helped tremendously and my world may have been set right if the autoimmune storm had not continued.
In addition to running fevers for months at a time, reacting strongly to every virus and infection I contract (and I have had them all), and experiencing progressive neuropathies, a blood plasma dyscracea was discovered. The condition is considered pre-malignant and is simply monitored until blood proteins accumulate in large enough quantities to be treated as cancerous.
And the anxiety-like this body is screaming to get my attention! Something is not right! It has progressed to essential tremors and I feel as though my body is literally vibrating. What is happening to my brain in all of this? I never had a problem with crowds or people, though I am an introvert at heart, and I felt like I had forgotten how to interact socially. The fear that rose out of nowhere overtook my natural confidence and assertiveness. There was no longer enough pleasure in activities to justify the pain and unease. Sometimes I don’t know if I am in bed because I am actively fighting an infection or because I cannot get up. I feel at fault for something beyond my control.
Guilt and shame, embarrassment, confusion, disgust, resignation, fear, sorrow and grief swallow me whole. I wish I could remember what it felt like to be well. I think when we get so far from healthy we no longer recognize how sick we are.
Why do I feel like I should be able to fix myself? This is the weight I bear. The straining thoughts for answers and solutions consume my creativity and productivity.
A “good” day is so subpar that I hardly know what to do with myself. How do I fit my dreams and plans, not to mention basic to do lists, into a six hour day? I have yet to do this. I rarely get past personal hygiene, which exhausts me, laundry, and refilling my water bottle. It is all failure.
The frustration of not having a remedy or even sufficient treatment to manage the expanding constellation of symptoms is fierce.
My body is good at hiding underlying problems. The symptoms may be profuse but the blood work is often perfect. My doctors seem to recognize this and they look closely at everything. It appears that I have some markers for several autoimmune conditions but not one in particular-lupus, Sjogren’s, myositis, scleroderma. My kidneys were damaged by infections and surgery and the bowel has not recovered well from a long bout of c-diff. I am a mess.
I used to enjoy fashion too.
This explosion was unexpected. The negativity might sound severe but I do not want to revise or mince words. I don’t even know how I came to be reading your blog. Thank you. Your journey and your positivity is lovely.
These are uncertain times and especially threatening for one with immune deficiencies. I pray you are safe and remain well.
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