I originally posted this on April 7, 2013. My sinuses have been one of my biggest nightmares since the mold first decided to take up housekeeping in them. Surprising (knock on wood) after all the exposures I received while being with my dad my sinuses have remained healthy while the rest of my body is still protesting.
Ok – we all at some point we all wish we could change something about ourselves. I have never really considered changing my nose although it isn’t a perfect nose.
I am not talking about wanting a new nose because of the way mine looks. I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like. While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.
At one point I joked about getting a silver nose like the villain in the movie Cat Ballou. Thinking, mold couldn’t grow in the silver.
Or maybe I could exchange my nose for one of these below. They are all nice looking noses if they didn’t come infected with mold.
Or maybe I would try to see about getting Elmo’s nose.
A friend back in the beginning used to joke with me about how to get rid of the fungal infection. Her husband was an AG teacher and they also lived on a ranch. She told me she would just go and get some Dursban and pour it into my sinuses. Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing. Can you imagine putting that in your sinuses? Not me.
What body part would you like new but not for cosmetic reasons? If I chose cosmetic reasons, I would be changing out a lot of parts.
Posted in Allergies and Sensitivities, Antifungal Treatment, Catch-Up Mondays, Chronic Illness and Treatment, Environmental Illness, Mold, Mold Exposure, Mycotoxins, Sick Buildings
Tagged allergic to life, bone infections, fungal sinusitis, Getting a new nose, osteomyelitis, sick buildings, sinus infections
In March I read a blog post that my friend Karen Ingalls had on her blog outshineovariancancer. The title of the blog post was For No Fear: You Must Know Fear. The title intrigued me and I would have loved to have found this back in the days when I was so fearful; fearful of living another day, fearful that I wouldn’t live another day, fearful of the next reaction, etc.
Thank you Karen for sharing such a wonderful post with us.
Posted in Allergic to Life: My Battle for Survival, Allergies and Sensitivities, Chronic Illness and Treatment, Courage and Hope, Depression, Environmental Illness, Food Allergies, Mold, Mold Exposure, Multiple Chemical Sensitivity, Reactions, Sick Buildings, Spirit
Tagged fear, For No Fear: You Must Know Fear, Karen Ingalls, Outshine Ovarian Cancer
I was excited to open my email and discover that a review of Allergic to Life had been done by Alex Jones and placed on his blog. Alex also suffers from new found chemical sensitivities and did an excellent job reviewing and highlighting my book. Please visit Alex’s Psykoscribble Blog and read my review.
I first met Alex through Rave Reviews Book Club where he is an active member, supporter, and reviewer.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Allergies and Sensitivities, Chronic Illness and Treatment, Cross Contamination, Environmental Illness, Mold, Mold Exposure, Multiple Chemical Sensitivity, Mycotoxins, Reactions, Sick Buildings
Tagged Alex Jones, allergic to life, Book Reviews, environmental illness, multiple chemical sensitivity, Psykoscribble Blog
There has been quite a bit of talking the last few days from MCSGal and mcslearningtoliveadifferentlife about what our canary is and about losing words when in a reaction. I posted this originally on June 23, 2012 and then posted it again in my Catch-Up Mondays on July 28, 2013 with the title At a Loss For Words. I still lose words despite the length of time it has been since my original exposure at work. I lose words during a reaction and when I am not in a reaction. The mold just messed with my brain. I have difficulty typing certain words. Despite being able to write these words and spell them to you out loud I type them wrong every single time. I want to type a blog post and not correct anything in it and let everyone see how I truly type before I take the time to go back and make corrections. One of the words that I spell wrong every single time is you. When I type it is always appears as yoiu. I have been very far behind in posting new blog posts. I have many ideas but just can’t seem to get myself back to the task of writing. Instead I have been cleaning house, something that is routine and helps me deal with all that has happened. I promise to be back soon in full swing soon. In the meantime there may be some reblogs of some amazing bloggers I follow and a few extra Catch-Up Mondays.
Don’t you just hate it when you lose or can’t retrieve the word you want from your brain? Since becoming ill I have found it is a regular occurrence. I will be talking to someone and in the middle of a sentence I can’t come up with the word I want to use. Try as I might, the word won’t come. Sometimes I have been successful by trying to find another word that means something similar. In the middle of a reaction as I was in yesterday, I was hard pressed to come up with the other word.
What was the word you say? I don’t know. I still don’t know. I was trying to convey how when dealing with someone I would just respond very vaguely without giving either a yes or no answer. As I was searching for the word I became tearful. I tried and tried and finally came up with equanimity (calmness, poise, serenity, self-possession). It seemed to work but wasn’t really the word I wanted to use. Maybe I was wanting to use apathetic (showing little or no emotion, indifferent, not interested or concerned). As I am writing this definition I think that is the word I wanted to use.
As hard as I try to retrain my brain by reading, crossword puzzles, etc. I still lose words in conversation even more so in the midst of a reaction. I still find when I type that I transpose the same letters in certain words over and over again even though I know how to spell the words. Yesterday when I was in the reaction my handwriting became hard to read (see picture for a sample of my handwriting in my journal during a reaction) and I spelled things wrong, my right hand became very cold and I had a much harder time expressing myself.
I have been told that mold mycotoxins can damage brain cells. Sometimes you regain some of the processes you lost but usually not all of them. When I was first exposed to mold (didn’t know it then) I would take phone messages and then look at them and realize they didn’t make sense and have to re-write them. Sometimes my boss would come in and ask me what the message meant even after I am sure it had been rewritten. My handwriting was also deteriorating . At the time I would become frustrated over this but it never dawned on me that something serious was going on with me and my brain.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Allergies and Sensitivities, Catch-Up Mondays, Environmental Illness, Mold, Mold Exposure, Multiple Chemical Sensitivity, Mycotoxins, Reactions, Sick Buildings
Tagged At a Loss for Words, handwriting during a reaction, I Lose Words!, MCSGal, mcslearningtoliveadifferentlife, mold exposure, multiple chemical sensitivity
My fellow blogger friend, MCS Gal, has a blog posted titled “What is Your Canary?”. I read it and immediately commented. This has led to numerous comments back and forth. Please check out her blog post and leave a comment.
Don’t forget to leave a comment here as well on what your canary is!
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?
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Allergies, Allergies and Sensitivities, Catch-Up Mondays, Chronic Illness and Treatment, Depression, Environmental Illness, Food, Mold, Mold Exposure, Multiple Chemical Sensitivity, Reactions
Tagged chemical sensitivity, chronic illness, environmental illness, inability to hold down a job due to illness, isolation, living with chemical sensitivity, multiple chemical sensitivity, Victim or Survivor
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.
Posted in Allergies and Sensitivities, Catch-Up Mondays, Chronic Illness and Treatment, Depression, Environmental Illness, Mold, Mold Exposure, Multiple Chemical Sensitivity
Tagged chemical sensitivities, chronic illness, embroidery, Focusing on what I can do., Loss of identity with chronic illness
The Month of May has been dedicated as Multiple Chemical Sensitivity (MCS) month. I suffer from MCS (also known as Environmental Illness and Chemical Sensitivity). I did not always have MCS. I was a very active and busy stay-at-home mother of two. I was active in their school, their activities, as well as in our community. I lived by my at-a-glance calendar to know when and where I was supposed to be at any given time on any given day. I sewed and did craft fairs. I baked and canned, and did things with my friends.
My MCS began after a mold exposure in my work place where it first manifested itself in severe sinus issues and brain issues (although I didn’t realize the brain issues were happening in the beginning). My boss would bring a phone message that I had written and placed on his desk to have me explain it to him. I remember many times writing a message and then realizing it was sloppy or didn’t make sense and redo it. The sad thing is that even then the messages would not make sense. Yet I still had no idea my brain wasn’t functioning correctly.
I didn’t know what was wrong with me or why I was constantly getting sick. It took nearly a year to discover that there was mold in the office and and a few more months before my ENT could get mucous taken from my sinuses to grow in a culture plate. I rapidly began reacting to all sorts of medication and developing food allergies. The chemical sensitivity took a little longer to rear its UGLY head. When it did, I was shocked. I had seen others where the masks and walk around in a daze but that wasn’t me! At least that is what I kept telling myself until it was me and there was no escaping it or denying it. Mold isn’t the only thing that can push someone into “MCS or environmental illness land”. An extreme exposure to pesticides will do it. An extreme exposure to chemicals in the workplace can do it. Slow but steady exposures to chemicals can also eventually cause someone to become sensitized to chemicals. How much is too much? There is no answer to that. Everyone reacts to different levels of a chemical. Not everyone has the same toxic load already before being exposed. Do people think we are crazy? Do they think it is all in our head? There are some that do. Sadly there are family members who condemn their own brother or sister or mother for having a sensitivity to chemicals. They truly do not want to accept that this condition actually exists. For if this exists, they may have to change their habits to avoid causing further illness to their family member. I have seen husbands leave their wives over this illness.
The isolation that MCS causes is dark and lonely. Very lonely. For that reason I chose many years ago that I would begin writing my story. I would become an advocate to the best of my ability. I started by writing my story which is now available (Allergic to Life: My Battle for Survival, Courage, and Hope). A link to purchase is in the sidebar.
Throughout the month I will be reblogging posts from some of my fellow bloggers who are also posting about MCS Awareness month. Last month I celebrated my 2 year Blogiversary. As a celebration, I began a giveaway on Rafflectopter. I several items included in the giveaway. Take a moment to click on the link and enter the giveaway which runs through the end of May.
Posted in Allergic to Life: My Battle for Survival, Courage and Hope, Allergies, Allergies and Sensitivities, Chronic Illness and Treatment, Depression, Environmental Illness, Food, Food Allergies, Mold, Mold Exposure, Multiple Chemical Sensitivity, Reactions, Toxic Free Living
Tagged allergic to life, chemical sensitivity, mcs, MCS Awareness Month, mold exposure, My Blogiversery, Rafflecopter giveaway