National Invisible Illness Week

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.

Toni Bernhard wrote a wonderful article entitled The challenges of Living with Invisible Pain or Illness. She is also the author of  an amazing book, “How to Be Sick”.  A dear friend of mine published her book, Intentional Healing: One Woman’s Path to Higher Consciousness and Healing from Environmental and other Chronic Illnesses, a year before I completed Allergic to Life:  My Battle for Survival, Courage, and Hope. I hope these writings will allow you to know that you are not alone in your battle with invisible illness.

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.

Catch Up Mondays: Human Canaries & Friendship – revisited

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.

Young People and Chronic Illness

I suffer from a chronic and invisible illness as do many of my readers.  We all know how difficult it is to navigate through life with an illness that can’t be seen.  It is difficult to convince others and often times those in the medical field that our symptoms are real; they are not something we have conjured up in our heads.  As an adult dealing with chronic and invisible illness, I have learned to find my voice.  I have learned to stand up for myself.  It didn’t happen over night and it hasn’t always been easy. I cannot imagine what this is like for young people who are still navigating adulthood and may not easily find their voice and be able to deal with chronic illness.

Toni Bernhard, author of How To Be Sick and How to Wake Up, writes for Psychology Today. A few months ago, she posted a wonderful article entitled The Extra Burdens Faced by Young People with Chronic Illness.  Toni’s articles are always very insightful.  I have read How To be Sick and plan on reading How to Wake Up very soon.

 

For My Twitter Followers

Hello Everyone!

I just set up a Twubs account and registered #allergictolife.  I want to schedule periodic twitter chats. For those of you who have twitter handles, please join me on twubs. In the comments section, please answer the following questions:

1. Would you be interested in engaging in a twitter chat with me? 
2. If yes, how often (bi-monthly/monthly/every other month)?  Weekly would be too big of a commitment for me.
3. What topics would you like to discuss in a chat (food allergies, mold sensitivities, isolation, chronic illness, gluten sensitivity, my book, etc.)
4. Time frame (1 hour)?
5. When would you like to see the first one happen?

 

 

 

Are you living with or in spite of chronic illness?

Allow me to introduce Rachel, my guest blogger today.  Rachel and I met through following each others blogs. Rachel blogs at DoILookSick.  I thoroughly applaud Rachel for what she is going through and all the information she shares on her blog.  I am amazed at the wonderful video clips and humor she manages to inject as well. And now I will let Rachel talk to you about chronic illness.

My name is Rachel, and I live with chronic illness. I used to live in spite of chronic illness, but as empowering as that may sound, it was actually quite detrimental to my mind, body and soul.

So what’s the difference between living with and living in spite of?

Let’s start with living in spite of. Living in spite of illness is what most of us are taught to do from a very young age, and for the most part it makes a lot of sense. You go to the doctor when you need to, take medicine or take a day off, then go back to life. I think that most people, when they find out they have a chronic (read: incurable) illness, try to maintain this cycle. It may work for a bit. You’ll likely end up at the doctor’s office more that you’d like, but after that you think you can go back to life.

Inevitably, though, you’ll eventually have to face facts – you’re sick. Your body is different than most people. There’s a new part of you that you aren’t fond of or proud of, and you’ve tried to hide it even from yourself. This is just how we’re taught to view illness. When illness is fleeting, like a flu or a stomach bug, you stay home and hide it. When it’s here to stay, it becomes a sort of skeleton in your closet. But there will come a point where you need to sit down with all your demons and work things out. Strike a deal. Say “look, I can’t keep denying you’re a part of me. We need to figure out how we’re going to get through life. I don’t like you and you don’t like me, but we’re stuck together and we need to make it work.”

The first step is to stop hiding from yourself. Let yourself be allowed to acknowledge symptoms for what they are. Don’t tell yourself you just slept poorly last night – be honest. Think “That feels like my chronic pain flaring up.” You’ll feel more in control when you are able to know yourself and your cycles of pain. You’ll be more adept at collecting data and noticing when your illness is worsening or getting better, even in the smallest ways. This is true empowerment – not “living in spite,” but “living with.” Not running away, but running with. Not hiding, but wearing your heart boldly on your sleeve.

Being honest with one’s self can make all the difference in a life with chronic illness. You will undoubtedly test the waters with other people, too. Doctors, family, friends…. along the way you’ll try to share your experience with honesty. Sometimes you’ll regret it. Sometimes people will make you feel ashamed. Other times people will embrace you, care for you, and perhaps even share their own invisible struggles. Neither way really matters. It may give you grief or a new friend, but in the long run your relationship with yourself is the most important thing. It’s very important to have a support base and even, if you feel so inclined, to reach out and share your story to raise awareness. But when it comes down to it, you’ll need yourself to be there for you more than anyone else. When you’re on the operating table under anesthesia, when you go to sleep at night, when you are truly alone, you’ll want to be a friend to yourself.

When you’re living in spite of, your mind chastises your body. Your mind will talk down to your hurting body. You won’t be there for yourself. You’ll say “I live in spite of all the crap you put me through.”, cross your arms, and turn away, when what you really need is to be gentle with yourself, own what you have, and work through it.

When my husband and I were in pre-marital counseling, we were taught to get married in the mindset that “divorce is not an option.” To look at each other, imperfections and all, and say no matter what, for better or worse, I’m yours. To work through the hard stuff and never abandon each other. To never lose hope. How much more should we treat our very selves this way? Divorce is not an option. You are stuck with yourself for better or for worse. Love is always a choice, and you must choose to love yourself – imperfections and all.

Catch-Up Mondays: How am I ever going to live with Chemical Sensitivity? – revisited

This was first posted on February 9, 2013.  Since that time I have continued to blog and stand up for those of us with chemical sensitivities, environmental illness, and chronic illnesses.  I have published my book and made a valiant effort to get the word out about environmental illness and what it is like living in isolation and fighting to not only survive but find the courage to move forward and dare to hope that life will get better.  Thank you all for sharing with me your stories and listening to mine.

Someone typed this question into a search engine that led them to my blog. How do we live with chemical sensitivity? We have to put one foot in front of the other and trudge through the unknown of what does or does not work for us. We have to live with others (many in the medical profession) not believing that we could be reacting to even trace amounts of a chemical. We have to convince others to avoid chemicals and the wearing of fragrant products (which are loaded with man-made chemicals to produce these fragrances).

How do we live with chemical sensitivity? We become diligent in keeping our environment safe, learn to become an advocate for our own health despite the naysayers, and we learn to deal with isolation. The isolation is many times much harder than trying to convince a doctor that you are not malingering and you truly are reactive. We learn to deal with the “loss of self” that often accompanies the loss of friends who do not care to make themselves safe for you to be around them, the loss of a job as it is difficult to be a productive worker in a work environment full of chemicals, and the loss of our beauty and hair care products.

To live with chemical sensitivity you need to develop a “thick skin”. You need to begin to care more about your health and welfare than you do about what others are or are not saying (You can’t go to the mall shopping with me?  Can you at least go to lunch?  OR How are you? Is there anything I can do the help? How can I make it so that we can be together?). To live with chemical sensitivity you need to say I am going to fight, I am no longer going to be a victim, I will be a SURVIVOR! To live with chemical sensitivity you need to focus on what you still can do and accomplish and not allow yourself to dwell on what you cannot do or places you cannot go.

I have dealt with all these demons. I have dealt with the loss of friends but relished in those that have stayed around and made the effort to be able to be around me. I have dealt with the loss of a job and sitting at home wondering “who I was” and “what would I ever be able to do again”. I have dealt with the medical community (mostly the workers’ compensation doctors and thankfully not my medical caregivers) not believing my condition and stating that I had a somatoform disorder. I have thrown away clothes and learned to live with those that could easily be washed and dried rather than dry cleaned. I have given up my contact lenses in lieu of glasses because I cannot tolerate the chemicals in the lenses or the solution. I have given up coloring my hair and been forced to allow it to stay gray. I have let myself stay in the victim role far longer than I should have.

Slowly I have thumbed my nose at those demons. In place of a job I now have written a book  soon to be published about my life and started writing this blog where I have found so many comforting words and words of encouragement from others in my plight and from those who do not suffer from this affliction. I no longer focus all my attention on “who I was or what I did” and spend more time realizing that I am still the same person but with limitations (maybe a better and more caring person because of these limitations). I have learned that I am okay with my glasses and my casual clothing. I am mostly okay without my make-up and hair coloring. I now say that I am a SURVIVOR! I refuse to allow the victim mentality to swallow me up and make depression my constant companion as it once was, thus allowing me to be the victor not the illness or the depression.

I have sought out therapy, I have surrounded myself with the love of my family and those friends who have hung with me, I have found hair stylists willing to come to me and cut my hair in the backyard or to suit up in tyvek to come into my home and cut my hair, I have started sewing again and doing crafts that once gave me so much joy (using only products that I can tolerate) and I am telling the world what mold, mycotoxins and chemicals can do.

So – How do you deal with chemical sensitivity? You first choose that you are going to take control and do whatever is best for you despite those that are against you. You surround yourself with those that you can count on for love and support. You rebuild your life by doing what you can and not allowing what you can’t to control you. You fight to survive.  You fight to find the courage to continue on and you fight for the hope that you will be okay.  Then you stare those demons of depression and victimization in the face and tell them NO! NO, I WON’T BE A VICTIM! I AM A SURVIVOR!

For those of you following along or new to this blog: How do you live with chemical sensitivity?

Catch-Up Mondays: What I Can Do – revisited

I first posted this on February 10, 2103.  I continue to embroider when I can, I have learned to knit and crochet scarves, and I have continued to sew when I can.  It is so important when we lose so many things that we once did to focus on what we can do.  We allow our identities to be swept up in what we do rather than who we are as a person. I have had to learn to redefine who I am even though I still struggle with the loss of my “former” identity.

Animated Crockery 1

Animated Crockery 2

Animated Crockery 3

I have been talking about focusing on things we can do and less on what we can’t. I love to do crafty things like sewing and embroidery. I find myself sitting in front of the television with my husband and embroidering while watching a movie. These three dish towels are part of a set of seven from the Animated Crockery series.

Thank You!!!

I know that I have said this many times over in posts, but I truly mean it.  There have been so many new followers in the last three months that I need to take a minute to say “THANK YOU”.  

It means a great deal that I have so many followers who want to hear what I have to say.  I cannot stress it enough how important all my followers are to me.  To my newest members I say, “Welcome”.  Thank you for stopping by, liking what I have to say, and choosing to follow along.  To my followers who have been with me for such a long time, many from the first few days/weeks of its existence I say, “Thank you for being my support all these months.”

This blog started out as a way of promoting my then upcoming book, Allergic to Life.  But it has turned in to so much more and I have met and fostered some amazing relationships through it all.

 

Heart of a Caregiver

For those suffering from chronic illness whether it be environmental illness (like mine), dealing with POTS, endometriosis, Marfan’s Syndrome, or Cancer, we rely heavily on our caregivers.  If we are fortunate, our caregivers are kind, caring, supporting, and will go to any extreme to help us battle through.  For me my biggest and most supportive caregiver has been my husband.  He built me a safe house, worked hard and sacrificed to allow me to go out-of-state for medical care, and shopped for me.

My dear blogger friend Karen Ingalls knows all to well what it is like to need a caregiver.  Karen battled Ovarian Cancer and her husband was beside her all the way.  Karen wrote a wonderful book entitled Outshine: An Ovarian Cancer Memoir.  Karen’s story moved me; the courage and inspiration she shares in her book is something that can benefit anyone no matter their chronic illness.

Karen recently discovered that her cancer has returned and will soon be fighting another battle.  She recently wrote a post entitled Praise and Gratitude to Caregivers.  In this post she shared a beautiful poem entitled Heart of a Caregiver.  Please take a moment to hop on over to Karen’s blog and read this lovely poem and learn about the wonderful and inspiring Karen Ingalls.

 

 

Walking along side my daughters

I watched my daughters walk in front of me yesterday. How tall and healthy they look. I am proud of who they are, thankful for the privilege of motherhood.  This is the beginning of a wonderful post by fellow blogger ChristaSterken.  As I read the post it made me thankful for my two beautiful, kind, caring, and thoughtful daughters.

When I was finishing up Allergic to Life, I asked my daughters to write about my illness through their eyes.  I am going to share a little bit of what each of them wrote.

SARAH

My mom is my best friend and I almost lost her. ..She was outgoing and fun and extremely crafty.  And one day, it all changed.

By the time I realized how sick my mom was, she was being shipped off to an environmental clinic in Dallas, Texas…I thought I would be okay while she was gone, but I was wrong.

When mom finally came home, she was a different mom than the one I had always known.  Yes, she was still loving and kind and beautiful, but she had changed too.  She was cautious and reactive and tired.

Ten years later my mom is well enough to play with her three grandchildren and love on them the way she loved on me and my sister.  I once thought my would not live to be 50, ans here she is making my girls dresses and teaching them how to do crafty projects…..

I am so proud of the woman I call mom.  She is a fighter who has never given up and has become so educated in the areas of her illness…My mom could have let this illness be the death of her but she chose to fight and she chose to live…I have never known a stronger person and I don’t think I ever will.

LAURA

After a war is over, many times our thoughts focus on the victories and the losses rather than the battles that were fought in the process.  People will talk about things as “pre-war” and “post-war”; in the same way I often think of mom as “pre-illness” and “post-illness”.  It’s so much easier to focus on the person she was before she became sick or to revel i the gains she had made over the last few years than to think about the times in between.  However, I know that thinking like this doesn’t do justice to the battles that she fought or the people who helped her fight them…Reading her words allows all of us–those who were present and those who couldn’t be–the opportunity to appreciate the long journey that this has been and to save the victories even more.

I was just 17 and graduating from high school when my mom first became ill…When I came home from college to visit, it was clear that my mom was not the same person she had been when I was growing up.  Before her illness, my mom’s creativity and resourcefulness made her a community leader, a good friend, and a great mother…When this illness came into our lives, I watched as it tried to destroy the very things I loved most about her…

From the beginning this illness as been a formidable opponent, but was no match for her indomitable spirit….Many years and battles later, she has succeeded in copying with aspects of her illness and has made more progress than I could have hoped for.  Her perseverance and good humor teach us that we can’t give up no matter what challenges life gives us….

Reading what my daughters have written, lets me know that despite not being able to walk ahead of them and lead them as long as I wanted to, they have done just fine.  They have become wonderful women full of love and compassion and knowledge.  Today, I walk along side these amazing women with pride.