Category Archives: Reactions

Why No One Figured Out Food Was Making Me Sick

Allow me to introduce you to Amy.  Her story of food allergies and the journey to find out what was making her sick, is an interesting one.  Now, I will let Amy tell you for herself.

Why No One Figured Out Food Was Making Me Sick

Five minutes. That’s all it took for golf ball-sized hail to destroy the four gorgeous pots of flowers I’d just set out on the patio. In two days our extended family was gathering for a dinner party to celebrate a wedding; I’d have to scurry to find more flowers. What a waste of time and money.

 

hailflowers

 

What I didn’t realize at the time was that the hail had also completely destroyed our roof along with many windows as well as the siding of our house. I’d be spending the entire summer dealing with the insurance company and contractors. Losing those flowers were small potatoes.

Sometimes we focus on the little things and entirely miss the big picture.

This is exactly what happened when I started getting sick in my thirties. The doctors focused on each of my symptoms—from vertigo to chronic pain– entirely missing the symptoms were all a part of the same illness.

The first doctor said my blood pressure was high and put me on meds. The second one told me my iron was low but brushed it off to a poor diet. Another doctor said the pain in my chest was GERD and prescribed meds. A dietitian told me I was malnourished and gave me a diet to follow. A gastroenterologist gave me meds for IBS. Another gastroenterologist told me to go eat fried foods and if I got sick, I most likely needed my gallbladder removed.  A gynecologist told me I needed a total hysterectomy.

Each time I got a diagnosis, I let out a sigh of relief.  At least it wasn’t cancer.

Still, something wasn’t adding up. After all these tests and procedures, followed by a hysterectomy and gall bladder surgery, my symptoms worsened. In fact, I became so exhausted I couldn’t get out of bed. Everything I ate made me run to the bathroom. I couldn’t remember what year it was, or how long I’d been married. Pain shot through my entire body. My legs caved when I walked up the stairs. My eyesight weakened, and I kept developing weird skin lesions. I itched all over.

I’d about given up when I saw an advertisement in our local paper for a food allergy blood test. Not one doctor had suggested food might be causing my symptoms—even though I now know reactions to food can cause all the symptoms I experienced.

When the blood test came back, I argued with the pharmacy that something must have gone wrong in the lab—I couldn’t possibly be allergic to that many foods!

So I went to a board-certified allergist for skin-prick testing. He confirmed I was allergic to myriad foods, including dairy, soy, eggs, corn, wheat, vanilla, nutmeg and asparagus.

I’d received negative results for celiac disease years earlier, but a new doctor ran a genetic test and confirmed celiac disease. Turns out I have both genes for celiac disease; either one parent has both genes, like me, or each carries one gene.  An endoscopy also revealed I have eosinophilic esophagitis, which explained why food often got stuck on the way down.

At first, I found it hard to believe food could make me so sick.  I was an adult—adults don’t develop food allergies! But as soon as I started eliminating certain foods, my health improved—immensely!

The prescribed painkillers for chronic pain and the antibiotics that followed all those procedures and surgeries in all likelihood contributed to a leaky gut and resulting food allergies and celiac disease. Certainly they didn’t help. Nor did the gluten-filled saltines I kept eating for an upset stomach!

I’ve learned a valuable lesson: Pay attention to the details, but look at the big picture. While each doctor had his or her theory for the cause of a symptom, my instinct was that all my symptoms were part of a bigger problem. I’ve since learned celiac disease can have over 300 symptoms!

 

flowersrevived

 

It took some time, but the flowers I thought had been destroyed by the hail eventually grew back. They don’t look quite as pretty as when I brought them home, but they are getting stronger and healthier.

Just like me.

What Is She Saying?

Today is day 11 of my “Spotlight” Author blog tour through Rave Reviews Book Club. I am being hosted by fellow RRBC member, Marlena Hand on her blog Life as I know It.

What Is She Saying?

I am not a part of this world
When I speak, strange
terms come from my lips
People look at me with my mask
as if I am an alien
Holed up here inside my room—
stripped bare of carpet

To read more of my guest blog post and learn what Marlena has to say, visit her blog using the link above.  Please take a moment to thank her for hosting me.

My Daughter, The Ghost Buster

It’s Day 3 of my “Spotlight” Author blog tour with Rave Reviews Book Club and I am featured as a guest on the Writer’s Chat.  Please hop on over and read my guest post and leave a comment.

I Am A Survivor!

I AM A SURVIVOR!

Yes, I am a SURVIVOR! I fought the battles and decided that I would not allow myself to be a victim any longer.

After years of allowing myself to sink deeper and deeper into depression as a result of my isolation and never-ending medical and legal battles, I had to choose whether I was going to stay in the unhealthy role of victim or begin to live my life despite its many limitations. I chose to SURVIVE!

Please join me on day three of my “Spotlight” Author blog tour with Rave Reviews Book Club.  Today I am being hosted by Harmony Kent, Harmony Kent Online.  Take a moment to visit Harmony’s blog and read my guest post.

Catch-Up Mondays: The never ending drive – revisited

I originally shared this blog post on April 7, 2013.  I still cringe at the thought of making this journey by myself.   When my girls were young, one of their favorite movies was “The Neverending Story”.   I experienced the never-ending drive.  This story was originally in my book but didn’t really feel like it belonged where I had it and never really added enough to the story so I deleted it from the manuscript but saved it.  It is another funny story similar to the one titled “Can I help you Ladies?”.   This story starts out with me and my daughter Laura (the same one in the story above).  I chose the Never-Ending Drive as the title for this post and you will understand once you get into it. A few days before the students were to arrive at school, my younger daughter Laura was scheduled to leave for college in San Francisco. My husband was not able to take time off from work so I took the day off to drive her. The night before we were to leave I helped her load the car and trunk as full as we could.  My husband and I would drive up again over the weekend and deliver what was left behind.  I prepared myself by printing directions to her dorm.  I had made the trip before with others but had never driven there myself.  I was going to rely on my daughter to help me with the directions.  I had not been feeling well and was extremely fatigued  I drove to my daughter’s house to pick her up early in the morning.  She was very tired.  I am sure that she had not slept much in anticipation of the move.  We drove through a fast food restaurant to get her some food and coffee.  She was not feeling well and soon fell asleep.  Occasionally I would wake her to see if we were going in the right direction.  She did not know. My plans were to take her to school and hang around until about 7:00 p.m. so that I would not have the heavy traffic to compete with on my drive home alone.  We arrived at the campus and carted all her belongings up to her dorm room on the second floor.  Exhausted, we both tried to set up her computer.  To our dismay, we could not get a connection.  After making a few phone calls, we learned that she needed to take her computer downstairs to an office to have a special component put in it and she needed a certain cord to hook it up to the school’s line. Laura wasn’t feeling well and wanted to sleep.  She had injured her back earlier and could not carry the computer.  So, I picked up the tower and made the trip to get it fixed while she slept.  I was told to pick up the tower in a couple of hours.  By the time I got the computer fixed and back to her dorm it was nearly 6 p.m.  I woke her up and visited with her for an hour and then decided to make the drive home. The goodbyes were hard for both of us.  She was now in San Francisco with no car and not really knowing how to get around town.  She was worried that she would not be able to find her way around.  I was upset because I was leaving my baby in a strange city and would be a two and a half hour drive from her if anything should happen. Reluctantly, I got in my car and drove off, both of us in tears.  I reversed my route and headed for home.  Things were going well.  I had been nervous about driving home by myself in the evening especially because I was not that familiar with the area. The sun began to set and brought with it unexpected challenges.  The glare made it difficult to read the road signs and the traffic was worse than I thought it would be at this time of the day.  I was supposed to take a certain highway number towards home, but there were two of them.  One said east and one said west.  I was confused and there was not much time to make a decision because the traffic was bumper to bumper.  I chose the one that had Oakland written on it. That turned out to be the wrong decision.  After a few miles I began to realize that nothing looked familiar.  It was dark by now and I was not about to get off the highway to ask directions.  I was in an area that was not familiar to me and there were not any major gas stations or restaurants that I could spot from the road. I continued to drive.  The next thing I knew I was crossing a bridge that I knew for sure I had not crossed on my way in.  It was a toll bridge and under construction.  Hesitantly, I paid the toll and crossed the bridge.  I was hoping that I could find some road sign that would give me a clue where I was or where to turn.  My fatigue and exhaustion had become almost overpowering.  I wanted to cry but controlled myself.  I had to get home.  I thought about calling my husband and asking for help but how could he help me if I could not tell him where I was. There was still some time before I was expected to be home so I decided to wait until I could offer some explanation of where I was.  I drove and drove.  Finally, I saw a sign that read Sacramento.  Hooray!  If I could get to Sacramento, I could find Hwy 99 and make my way home. Another hour passed and I was in Sacramento and had found my way home.  I needed to phone home but did not want to admit that I was so horribly lost and that it would be another two hours before I got home.  My husband was worried. He asked me how I could have gotten lost since I had very good directions.  I told him that I did not know and promised to keep in touch as I drove home. Nearly out of gas I found a station that looked to be in a safe area and pulled off the highway.  There would have been plenty of gas if I had not decided to go “sightseeing” instead of driving straight home. Sometime between 11:00 p.m. and midnight I made it home, a little over four hours after I left San Francisco.  Exhausted, embarrassed and hungry, I crawled into bed.  Early the next morning, I got up, got dressed and headed for work as usual. That weekend my husband and I took my daughter the rest of her things and took her grocery shopping.  On our way home, my husband asked me to try to remember which exit I had taken.  In the light of day, I easily discovered what I had done wrong.  The exit I had taken actually took me in a circle and then in a direction completely opposite of where I was headed.  The trip from hell was not one I would ever forget or one that I would ever want to repeat.  I have never made that trip by myself again! I need to explain that a few months earlier I had been on so many medications that we had stopped everything, including my thyroid, to let my body calm down and see what would happen.  My thyroid was a mess and I had just started taking medication again a few days before I made this journey.  I was fatigued and sick.  The drive from here to San Francisco still scares me now so much that I wouldn’t dream of attempting it myself. Have you experienced a never-ending drive that leaves never wanting to do it again?

FEAR!

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.

 

REVIEW: ALLERGIC TO LIFE BY KATHRYN CHASTAIN TREAT

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.

I Lose Words! Where do they go?

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.

What is Your Canary?

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!

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?