Today is the start of National Invisible Chronic Illness Awareness Week which runs through September 14th.
How many of you who are ill with environmental illness, chronic fatigue, fibromyalgia, etc. have been told that you don’t look sick? I have been told that I look good when I feel horrible. On one hand I am glad that I am not looking as horrible as I may feel but it is hard to explain to others when you may not look as bad as you feel. On August 3, 2012, I posted on this site “Me in the Beginning” When you look at my picture taken in 2002, it is easy to see how sick I was. I don’t even think I realized how sick I looked until later when I saw my picture. I knew I felt bad and something horrible was wrong but looking at myself in the mirror daily the changes were gradual. I didn’t suddenly wake up with dark circles, a haunting look, skinnier than I had ever been and with yellowing skin tone.
I want to raise awareness that environmental illness, chronic fatigue, fibromyalgia and other chronic illness may not necessarily affect a person’s appearance. It is truly and invisible and silent terror that many go through on a daily basis. I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.
Please take a moment to visit the Invisible Illness website and read the stories that others have shared. Had I been more aware and on top of things this year, I would have included a blog post on this site as I have done in the past.
I originally posted this on March 5, 2013. This is a topic that comes up all to often among those of us with chemical sensitivity or chronic illness. I decided it was time to share it once more on my Catch Up Mondays.
Today I was honored to be listed among some other very good bloggers on Ichigo Ichie in her post on Human Canaries and Friendship. We all know that we are the canaries, the guinea pigs for finding what works/doesn’t work on our environmental illness and chemical sensitivities or other chronic invisible illnesses. We also know what it is like to lose friendships during our struggles to make our world safe and in search of improving our health. We also know how empowering it is to make new friendships with those who understand and will gladly lend a sympathic ear. I am now following this blog too.
Dr. Rea once said that we are just the tip of the iceberg. One day, we will be the ones that are empowered, the ones with the knowledge, and everyone else will be beating down our doors for information and sympathy.
I remember back in the beginning when I was sick and still working. One of my co-workers sent me this video clip. I loved it and had saved it on my computer. Somewhere along the line it got deleted. I was thinking of it today and decided to search youtube for it. Whenever I was having a really bad day, I would sit at my desk and pull up the video and watch it.
I hope you enjoy it. We are all SURVIVORS. Our circumstances may be different but we have all survived something in our lives.
I am pleased and honored to again participate in the Beauty of a Woman BlogFest hosted at August McLaughlin’s Blog (Please visit August’s site and read all the other submissions). To visit my Beauty of a Woman BlogFest post from last year, click here.
In going through my files on the computer recently I came across a file entitled “Tears of a Woman”. It was a video clip that I found and had saved some time ago because I thought it was so beautiful.
The words that are displayed as the music plays resonates with me; especially the following: “You see my son, the beauty of a woman is not in the clothes she wears, nor is it in her face or in the way she does her hair…The beauty of a woman resides in the eyes. It is the door to her heart; the door where love resides.
We are conditioned through magazine photo after magazine photo that beauty needs to be achieved through hair products, clothes, and make-up. It is hard to get through a commercial break on television without seeing an ad for beauty products. I bought into that in high school. I began wearing make-up. My freshman year I had to have the latest hair cut, the Sassoon. Of course the hippie culture was all around us and I began wearing less make-up but never left without blush, mascara, and lip gloss. My clothes weren’t department store fancy but they were my own creations. I had learned to sew in junior high school and a neighbor girl down the street and I would spend hours at the fabric store picking out patterns and trims. Some of the dresses I made were from these patterns (patterns that I can’t have any more but had my husband take pictures of for me).
This dress was done in olive green suede cloth with beautiful embroidered ribbon all along the front zipper.
As I grew older my amount of make-up didn’t change much. I did spend money on lotions and creams for my face and body. I spent money and time getting my hair done (highlighted or colored and cut). When I chose to go back to work, I spent more money on my clothing. My jeans, tees, and sneakers from time spent as a stay-at-home mom wouldn’t be acceptable in the “work world”. I was finding myself (or so I thought) and becoming more of a woman of the world. My hair was done, my clothes were new, I had new shoes, and even started getting manicures (including the infamous gel nails).
Suddenly all that changed! I was exposed to mold in my work place and I began to develop sensitivities to all chemicals. I began to feel ugly as I gave up my contacts for old glasses that I hadn’t worn in years. I gave up coloring my hair and getting it cut because not only could I not tolerate the chemicals in the hair color but I could not tolerate the salon either. I gave up my nice new clothes because they were contaminated with mold and mycotoxins and were making me ill. They were traded in for cotton clothing that could easily be washed. I gave up all my lovely new shoes for a pair of ugly white sneakers. And worst of all, I gave up my identity. Survival meant that if I were to leave my house for the doctor’s office I needed to wear this ugly charcoal mask that hid my face and all expression.
Me wearing my mask.
I was sent far away from family and friends to the Environmental Health Center in Dallas for treatment. What I found there surprised me. I was not alone! There were other women like me. These women were wonderful, compassionate, helpful, and supportive. They opened their hearts to me. The women also hid behind masks, sported uncolored and uncut hair, and wore simple clothes. Despite their lack of what the world tells us is beautiful, these women were beautiful to me. These women had gone through similar loss of health, loss of friendships, loss of belongings, and loss of identity. I was not judged by my looks. My unkempt and uncolored hair did not draw strange looks of disapproval. My mask did not draw fear that I was somehow carrying some dreaded disease nor did it draw the looks of sympathy that I had seen in the outside world.
These women were beautiful through their eyes and their hearts that they opened up to me freely and without reservation. Their beauty was in the kindness and compassion that comes deep from within. I have found this kind of friendship and compassion through this blog as well. It has come from women who know this struggle and from women who do not share my struggles but have reached out and touched me through their kind spirit.
Again, I dedicate this to all those women who have struggled to keep going and who have been forced to give up what society feels is beautiful. For all those women who have struggled, been forced to give up their identity through their clothes and cosmetics, and dealt with the pain of chronic illness (both the visible and the invisible), I say to you: “YOU ARE BEAUTIFUL TO ME!” This blog is dedicated to you. May your spirit continue to show through those lovely eyes of yours and pour from your beautiful hearts.
This post was originally shared on November 27, 2012. I continue to tell others that they are stronger than they ever could imagine. When faced with struggles, we can lie down and give up or we can choose to fight. I have been a fighter from the beginning with this illness. I fought through the depression and loneliness it caused, I fought for the courage to continue on when I wanted to give up and die, I fought for what was right in the workers’ compensation case, and I continue to advocate for others by sharing my experiences. I wrote “Allergic to Life” to share my journey and let others know not to give up hope.
I discovered Pinterest about a year ago and began collecting quotations. I think this quote goes well with this post. We never know how strong someone is unless we can walk in their shoes.
Strength
A friend recently posted this quote on her Facebook page. “You never know how strong you are until being strong is the only choice you have.” — unknown.
Isn’t this the truth. I don’t know about the rest of you but I have been told so many times things like: “I don’t know how you do it.” “I don’t think I could deal with all that you deal with.”
Being strong is ultimately the only choice. We push forward and do what is necessary despite discomfort, pain, lack of food choices, sleeping on cots, severe reactions, surgeries, grieving for our former lives, etc. I believe that those who have said I don’t think I could deal with all that you deal with would find an inner strength that they didn’t know they had. Sure there is depression (I have and do deal with it) but the strength to fight and the will to live has kept me pushing forward in the battle for survival, hope and courage. I have written in my book about these types of comments. In my book I quote from a journal entry of September 26, 2004.
“What makes them think I am coping? What makes them think I am handling this? They should just read from my journals and they will soon discover what life is like for me….I feel like a caged animal at the zoo, on display for the morbid curiosity of others. Look at the crazy woman. She can’t come around us. She wears a funny mask! Why did God keep me alive? What purpose am I serving?”
I have decided that I have to stand strong. I have to deal with this. I have to make others aware of what mold does. I have to offer whatever I have learned and share whatever I have done that helps me. God kept me alive during reactions that I thought I surely would die from to be a spokesperson for others.
When you don’t feel that you are strong enough, dig deep within. That strength is there despite your fears and pain. God kept me alive for a reason and I believe he gave me the strength I didn’t know I had.
This was first posted last year on December 23, just days before Christmas. Recently I had a conversation with my mother. She was saying how she missed having us come to her home for Christmas, seeing the presents under her tree, and sitting down to Christmas dinner at her table. It breaks my heart that we have had to “change” the rules of how the holidays are dealt with and how they are spent. It breaks my heart that my mom no longer has us at her home.
I have been posting on how isolation affects me during the holidays and others with MCS and chronic illness but I haven’t mentioned how it affects those closest to us, our families.
All my life we had Christmas at the home of my mother and father. When my sister and I grew up and got married (within four months of each other) Christmas Day was still spent with my parents. My husband, daughters, and I always spent Christmas Eve with my husband’s family and Christmas Day with mom and dad, often going back over to his parents’ home for dessert later in the evening.
Suddenly I am sick and everything bothers me including my parents’ home. Suddenly every major event has to be held at my home. Everyone suits up (tyvek) or wears new clothes that have been purchased for them to wear and laundered here so that they don’t smell like the stores they came from. Is it fair to my mother and father that I cannot come into their home and see their Christmas tree and spy the presents that gently lay below it? Is it fair that my daughters no longer get to participate in that tradition as well. My grandchildren have never had the experience of sitting on the warm and carpeted living room floor of their great grandparents’ home and open presents or gather in my mother’s homey kitchen for a wonderful dinner that she has so generously prepared? No it isn’t fair to them.
When we talk of our isolation we need to remember how this isolation has not only affected our lives deeply but forever changed how family traditions are observed. My mother and father and family come here without grumbling. They suit up if necessary without complaint. They step into the cold garage and exchange their clothes for those that have been especially prepared for them to wear. They sit on my wicker or metal chairs or the cold tile floor to open presents as if it were the most natural thing in the world.
So to my family, I am deeply grateful that I have you in my life. I am grateful that you have never questioned this illness of mine, the crazy way I have to live and the crazy way I need to do the things I do. You are the most amazing family any one person could hope to have. Thank you, I love you and Merry Christmas to you all to all my followers and fellow sufferers.
My sister and I on Christmas Day.
This picture of my sister and I (I am the brunette) is of us with our dolls in our arms and at our feet suitcases filled with clothes that my mother and grandmother made for them. It is one of the few that I have found and had scanned for me and I treasure this picture. My doll is stored away and one day my granddaughters will get to see her and her pretty clothes.
So next time you grumble about how your holiday has been ruined, take a moment to reflect on how it as also affected your loved ones. I will be forever grateful to have the support from my family especially at the holidays when “new traditions” have to replace all those that are so familiar to us.
Merry Christmas to you all. During the next week while my family and I are celebrating Christmas, I will be re-posting some of my older posts. To make them easier to find later, I will label them all as Catch Up Mondays.
Also, Allergic to Life will continue to be discounted until the New Year. I have been trying to get the e-book discounted for those that cannot tolerate ink. It looks like this may not happen before Christmas.
I just read a wonderful review from fellow blogger Miche at The-Labyrinth for Allergic to Life. Miche also suffers from chemical sensitivity, other allergies, and a severe allergy to mold.
I truly appreciate that she took the time to read my book and learn my story of what brought me from a regular woman who went and did what she wanted to someone who became “allergic to life”. Please take a minute to visit Miche, read her review, and sign up to follow her blog. Miche writes amazing blog posts and has been a champion for students with disabilities at her university in Australia.
I was nominated today by the lovely Jenny at My Fibrotastic Life for “The Dragon’s Loyalty Award”. Jenny is the proud nominee of this award four times already. For this reason I am not including her in my nominees – but I want to state that she has been a great and loyal follower. I have had several nominations over the last few months but have been so wrapped up in all things book and other issues that I have not taken the time to honor them. Today I am turning over a new leaf and promise to be more diligent when it comes to responding to awards given me.
“The philosophy of the award is: The Dragon’s Loyalty Award is an award for the loyal fan/commenter, whether the recipient is a fellow blogger or just someone who follows and comments regularly”.
There are some rules that one must follow in order to fully accept the award and they are as follows:
1. Firstly, display the Award on your site. You earned it and you deserve it! (check)
2. Link back to the person who gave you the award in your acceptance post; (check)
3. Nominate 15 well deserving bloggers for the Award and let them know the wonderful news by sending them a message on their site; (this will be done as soon as this link is posted)
4. List 7 interesting facts about yourself” (check)
I have done these awards before and don’t know if I can come up with 7 facts that you don’t know about me but here goes;
I have never learned how to skate. I remember trying a few times at the roller rink but was so bad (uncoordinated) and embarrassed that I quit going.
When my left hand gets cold you can faintly see a scar across my fingers where I grabbed a fresh cup of hot coffee on the table and spilled it on my hand when I was a baby.
I didn’t get chicken pox as a child no matter how many times I was exposed but instead got them when I was 31 from a child who was visiting my daughters’ preschool on the day it was my turn to volunteer and then gave them to my own daughters 21 days later.
Since we are about to celebrate Thanksgiving – I will tell you that I came down with the mumps on Thanksgiving Day.
I chose to walk nearly two miles to school during high school because I didn’t want to walk 1/2 mile and then ride the bus.
I was in Whose Who Among Junior College Students.
My favorite toy was a stuffed dog with bells in his ears that I for some strange reason named Gas Pipe.
I have noticed today that I have several new followers to this blog. I would like to take a moment to welcome you and say thank you. Please feel free to comment on blog posts and ask questions.
You will see that I have a great group of followers who are amazingly helpful as well.
To all of you, both new and long-time followers, I say thank you for wanting to learn more about my story and environmental and chronic illness. Your support and encouragement mean a lot to me.
I was shocked recently to find an email in my inbox stating that I had been nominated for a WEGO Health Activist Award. I was nominated in the “Best In Show Blog” category. I completed the required information and it is now up on their website. I am honored to be included with so many other bloggers for this title.
I have no idea who nominated me but am very excited to have my blog thought of in this way.
I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.
allergictolifemybattle 