Tag Archives: depression

Catch Up Mondays: Mold – Trigeminal Neuralgia revisited

Periodically I get searches for mold and trigeminal neuralgia.  I posted this on October 15, 2012.  While I don’t have the constant pain I had for many years, a reaction or a sinus infection can set me off with pain all along the left side of my face and the feeling of an ice pick being stuck in my left eye.  I am sharing this again for those who may have similar symptoms.

Mold and trigeminal neuralgia were put in the search engine today.  I have talked vaguely about my having trigeminal neuralgia.  For those not familiar with trigeminal neuralgia, it is a condition that affects the trigeminal nerve, one of the largest nerves in the head.  It is responsible for sending impulses of touch, pain, and pressure from the face, jaw, gums, forehead, and around the eyes.  Trigeminal neuralgia can feel like a sudden severe shock-like or stabbing pain on one side of the face.  These attacks can last several seconds and happen over and over throughout the day.  Some attacks can last months at a time.

I began developing trigeminal neuralgia as the bacterial and fungal infections in my sinuses continued bombarding me one right after the other.  I developed osteomyelitis (bone infection) in the sinus bone.  I had several surgeries to keep scar tissue and the infection cleared from the bone and the sinuses in general.  The pain was so intense.  I was on pain medication from surgery and it seemed to help.  I couldn’t stop the pain medication or I couldn’t function.  I needed a pain pill in order to stop the pain in the morning so I could get up and start my day and head to work.  I needed a pain pill sometimes in the middle of the day so I could focus on my job.  Lastly I needed a pain pill to numb myself enough to be able to try to sleep.  The pain was so intense that I felt like an ice pick was being jabbed into my left eye and twisted.  The pain would radiate down through my left maxillary sinus, my jaw and my left ear.

When my ENT thought I had been on pain medication too long, he decided to try me on Neurontin (Gabapentin).  It took a large dose to calm the nerves down.  I think the maximum dose was 1800 mg. and I was on 1200 mg.  The face and eye pain calmed down but at the expense of the side effects of the Neurontin.  The side effects for me were dizziness.  I was so dizzy that I was afraid to drive and once walked several miles to and from his office to avoid driving and the possibility of an accident.

As time as moved and we have been able to keep my sinuses in better order, the neuralgia is less frequent.  An exposure to a chemical that I might come into contact with will cause the nasal passages to swell, produce large amounts of mucous and trigger the neuralgia and the pain.  I no longer do well on Neurontin or pain medication (probably from taking so much of it).  Now when it flares I just have to apply heat and rest and wait it out.  A sinus infection whether bacterial or fungal will also trigger the return of the symptoms.  We have to keep my antifungal treatment at a level that keeps the fungal infections from re-occurring as often.  I am including a picture of the trigeminal nerve to show how much of the left side of my face is affected when I have a flare-up.

File:Gray778 Trigeminal.png

Another Book Signing – A New Adventure

As MCS Gal said recently:

“Sounds like your journey is taking you places you never imagined. We never know where life will take us – that can be scary or feel like an adventure. Hope you are enjoying the adventure.”

My life has been one adventure  after another, not always welcome ones, but adventures that I have to live through and some that I will savor for a very long time.

In less than two weeks I will be doing a book signing at High Country Health and Café.  The owner has taken four of my books on consignment and offered a book signing for me.  The signing is set up for Saturday, November 16th, from 12:00 p.m. to 2:00 p.m.

I am working on some other book signings but the trick is finding safe enough places for me to be.

Catch Up Mondays – For all the women with EI – You are stronger than you know

I originally posted this on October 6, 2012.  While this poem was written for and about women, my poem could easily be made to fit men as well.  There are men who are also suffering from environmental illness (chemical sensitivity, multiple chemical sensitivity, or whatever term they have chosen to use).  They also suffer many losses and insecurities as well.  So please let me also dedicate this to all those suffering whether male or female.  I have had folks tell me I don’t think I could do what you are doing.  I think they would be surprised to find out how strong they really are when presented with some of the same circumstances.  We are all stronger than we think or could even imagine.  I chose not to give in but to fight the battles.  It wasn’t always easy but I just couldn’t give up.

I spent nearly all of 2003 in Dallas, TX treating at the Environmental Health Center-Dallas for my environmental illnesses, having a hysterectomy and flying back home to California long enough to have sinus surgery (the reason I came home instead of staying in Dallas is a story for another time).

I posted an excerpt of “Who Am I?” on May 10, 2012.  This was written about me.  Prior to this I wrote a poem entitled “Who Are We?” as a tribute to all the women I had become friends with while in Dallas; women suffering like I was.  There are many men with environmental illness but because I was surrounded by mostly women who were sick the poem was about us.  I only know the female perspective on this illness and cannot comment on how the men feel or to explain what it is like for them to lose what they feel defines them as men.

WHO ARE WE?

Who Are We?

We are the women of environmental illness

stripped of our “identities”

The ones who no longer feel

so “feminine:

Who Are We?

We are the women who

feel older than our years

We were the caretakers of

our families

Our families are now

our caretakers

Who Are We?

We are the women whose faces

are bare, lashless eyes, pale

cheeks and colorless lips

Gray streaks of hair now replace

what was once a radiant

glow of color

Who Are We?

We are the women whose

bodies have been ravaged

We have lost our food, our

electricity, our vitamins and

our organs

We are the women who are

thin and frail

Who Are We?

We are the women who

struggle each and every day

We endure being poked with

needles, baking in a sauna

and countless physiological

and neurological reactions

Who Are We?

We are the women who walk

around behind masks of charcoal

Our smiles and frowns and lovely

lips hidden to the world

We are the women who secretly

cry out in the darkness of our

empty rooms – yearning

for the life we once had

Who Are We?

We are the women who are

stronger than we could ever

imagine ourselves to be

The Women who daily stare

adversity in the face

The Women who have revealed

our true selves to the public

Who Are We?

We are the women who have

given up our identities in

return for new ones

Gone are our contacts, hair color

and make up

Gone are our dressing in trend and

latest fashion-dos

Who Are We?

We are the women who

will survive

The women unafraid of

unmasking our true selves

We are the women who can

say, “This is the real me!”

Who Are We?

We are not the make-up, the

clothes or the hairstyles

We refuse to be measured

by fashion or trend

We are women

and we will fight to

the bitter end?

Coming Soon – Author Interviews

The life of a person suffering from any type of chronic illness is a lonely and isolated life.  We find ourselves oftentimes sitting alone in our own misery.  For me, I began writing in the wee hours of the morning.  I wrote everything down that had happened in the day (good or bad), what I was feeling, and where I saw my life going.  I began writing poetry in my journals as well yet I had never written anything like this before in my entire life.  Reading also became an outlet for me and I am grateful that out of all the things I was allergic and sensitive to, newsprint was not one of them.  Reading took me out of my misery for a little bit and into the mysterious happenings of characters like Jack Reacher or Kinsey Millhone.  Reading let me into the lives of Jimmy Stewart, Katherine Hepburn, and Lucille Ball.  In 2003 I began writing my own story, the journey of my life after exposure to mold. This blog has been about my journey, treatments I have taken, excerpts from my book, and a place to share about chemical sensitivity, mold, and chronic illness.  I have been asked about hosting authors on their book tours.  At first I didn’t want to do it because this blog was not set up with the idea of promoting books or reviewing books.  The more I thought about it, the more I realized that I keep talking about how reading was one of the tools that helped with my isolation and depression so why not share some of the books I have read.  I have decided that I will be sharing a book a month either as a review or as an interview with the author.  I have become an eclectic reader.  No longer do I just read mystery books and biographies.

Coming soon will be my first interview with author Jennie Sherwin.  Jennie has written “Intentional Healing:  One Woman’s Path to Higher Consciousness and Healing from Environmental and Other Chronic Illness”.  She is also a contributor to Consciousness News. I have many more books I want to share and am currently sitting at my computer working on interview questions.

Perceptions/Appearances/Feelings

This is something I have been talking to my daughter and a few friends about lately.  Yes, I am still sick.  Yes, I can go into a few stores but only if I wear my charcoal mask.  Yes, I can eat out at a few outdoor cafes when they are willing to accommodate all my allergies.   I am upfront about the fact that I have gained a little more freedom and flexibility with regards to being able to dash into Target to pick up a card or item and the fact that I can eat at a couple of outdoor cafes.

Then why do I feel guilty about this?  Why when I see someone I know do I want to hide?  Why do I feel the need to explain my actions (Oh, I can eat here because they have a wrap so I don’t have to worry about yeast, and they will leave out the avocado, and they will substitute the aged cheese for the provolone that I can eat, and I can finally eat lettuce and tomato again.)  For years I have been so severely sick and at times thought I was dying.  Now that I have some freedom why should I feel like I am being deceitful when I am out doing what things I can finally do again?

I have been wrestling with these feelings for a while now and I can’t seem to get rid of them.  I think it is even more apparent now that the book is out there chronicling my journey and my life is out there as well.

I think it is time for an appointment with my therapist.  I should be rejoicing in the newfound things I can do and not feeling bad about being able to do them.

My question to you:  Have or are any of you going through this yourself?

Catch Up Mondays: Mold Spores, Mycotoxins, and Cross Contamination

I originally posted this on August 27th, 2012.  As I read or hear from more and more people about being contaminated by mold, I decided it was time to share this post again.  Mold is insidious.  It gets into and onto everything including those things that we hold most dear like a favorite stuffed animal from childhood, a well-loved book, and our precious photos.  Some of you have heard this talk from me many times about giving things away.  I have heard from some that all I needed to do was place my things out in the sunshine or wash them in borax or vinegar.  For me the decision was my things or my health.  I had gone through so much by the time I was told that it was best for me to give up my things.  I didn’t want to go down that road again and risk another contamination.  I offer what I and some others have done but ultimately the decision is up to the individual.  Some have managed to keep some items and not others.  This is such an individual illness.

Many of you living in the US have seen the commercial on mesothelioma.  It talks about if you or a loved one was exposed to asbestos either directly or indirectly  you could experience this form of cancer.  It has taken years for asbestos and the damage it can cause to finally come to the forefront and for these cancers to show up.

When trying to explain cross contamination from mycotoxins and mold spores, I ask if the person I am talking to has seen this commercial.  I explain that it is very similar.  I was exposed to mold spores and mycotoxins where I worked.  I wore those clothes home and sat on my furniture, walked on my carpet, lay down on my bed, sat in my car and those same spores were spread into the air as I walked around the room.  Those aerosolized spores then were sucked in to my computer fan, my refrigerator fan, my air conditioning ducts and anything else that has a fan or takes in air.  I was constantly being re-exposed at work and then through cross contamination in my home and car.

After getting the results from my urine tricothecene test, I was told that I needed to get rid of my things (clothes, computer, cloth furniture, papers).  I was told this just as I was about to make my second trip to the Environmental Health Center-Dallas for testing and to have major surgery.  I ordered new clothes and was told that until I left and something could be done with regard to my furniture that I could cover the furniture with sheets to help protect whatever new I had bought.  I had no idea that I would be in Dallas for most of 2003.  When I came home my husband had built me a new house using safe products, tile floors, etc.  Before coming home I ordered new clothes again and would only come home with the clothes on my back and toss them and shower before coming into my house.  I was determined not to cross-contaminate my safe place.  I did not bring my computer, refrigerator, television, cloth furniture, papers or clothes.  I literally started over.

When I tell those who have asked me questions or sought advice about such things that they need to basically start over, it is overwhelming and hard for them to comprehend.  I remind them that they are just “things” and their health and recovery is more important than “things”.  I understand their pain at getting rid of their belongings.  I understand their fear of re-contamination.  In my book I wrote:

On February 11, 2004, I wrote in my journal, “I hate this aspect of my life. It causes the paranoia. I am so afraid of re-infecting myself that I wonder: even if the allergies get more manageable, will I be able to go out anyway because of this fear of mold and mycotoxin? It has already taken so much of my life away.

I also wrote:  I saw Rick toss out my old stuffed Scotty dog that I had had since I was very little. I saw him toss out my favorite old teddy bear. I saw him pack up old blankets, cloth Christmas decorations, baby clothes that belonged to the girls, baby clothes that were once worn by me. It was devastating!

This illness goes beyond the physical pain of reactions and extends to the raw emotions of getting rid of cherished belongings, being told you are crazy, being told environmental illness and multiple chemical sensitivity does not exist and of learning to deal with isolation and a new way of living.

Book Blog Tour: Day 5

Today I am excited to have Katie from tissue tales (formerly connective tissue disorders) hosting Allergic to Life and I on Day 5 of our first ever book blog tour.  Katie and I connected about seven months ago when she began following my blog.  I read the name of her blog post and was baffled.  I had no idea what connective tissue disorder was so I immediately went to her blog to learn more.  I discovered that Katie is a young woman who is dealing with a painful disorder.  She describes connective tissue disorder as:

Connective tissue is the most diverse of the body’s four tissue types. If I were to describe it to you in a “nutshell” it would look something like this: connective tissue is the glue of the body. It holds everything together both inside and out (organs, joints, arteries, everything). As you can imagine, it does a very important job and is found and needed in virtually every fraction of the body.

I began following Katie immediately to learn more about she manages her life with such a disorder.  I soon learned that she is also a very talented artist from the drawings she shares on her site.  Check out her poetry and art section.

I have written a guest blog post for today’s tour stop.  During my battles I began to lose my identity, my sense of self, and depression wanted to be my best friend. Today I have included an excerpt from my book about what life felt like to me.

Catch-UP Monday: Kindness – revisited

I first shared this post on kindness on August 13, 2012.  I have had many conversations with others about what I wrote in this post.  I continue to try and live those words.

Be kind, for everyone you meet is fighting a hard battle. —Plato

I recently read this.  Those are powerful words!  I think in the midst of my battle for survival and the courage and hope to keep going, I sometimes forget that I am not the only one fighting a battle.   Others are fighting just as hard.  Their circumstances may be different but their battles no less frightening and painful than mine.

I remember sometimes when I would be in the midst of feeling so lonely, so isolated, so scared that I wouldn’t get better, my husband would remind me that “so and so” was much worse off than me.  Of course, in the midst of my own hurt, I didn’t care if someone was worse than me.  Those were not words I wanted to hear.    It would make me angry.  Angry at him and angry that my pain, isolation, loneliness and fear were not being taken seriously.  Eventually I would calm down as the “fight or flight” action dissipated.  Then I would feel bad that I hadn’t cared about the others, about anyone worse off than myself.

I am trying to not let my own situation overshadow all those who are also suffering.  I am also trying hard to be kinder to myself and be more accepting of my limitations.

I recently read a very well written piece about being kind to ourselves.  You can find it at:  http://juliatuchman.tumblr.com/post/27924568863/pet-shop-prophet

Catch Up Mondays: Mindfulness – Revisited

This was originally posted on August 6, 2012.  I have passed this book on and wish I had kept it for myself.  I guess I will order myself another copy.

About a year ago I saw Goldie Hawn featured on the Dr. Oz television show.  They were discussing a book she had recently written, “10 Mindful Minutes”.  Goldie Hawn had started the Hawn Foundation to support research into developing ways of helping children become healthy and eager learners who can reach their full potential.  A program developed by her foundation, MindUP is used by educators around the world to teach children how their minds work and how their thoughts and feelings affect their behavior.  It gives them tools to help deal with stress, negative feelings, calm their minds, remain focused and develop compassion and empathy for others to ultimately be happy themselves.  I ordered the book thinking it could be just as helpful for adults like me suffering with environmental illness and the depression and isolation it can cause.

The book arrived and I opened it up eager to start reading.  Just as quickly I put it down because I couldn’t stay focused.  I have learned that for me it is best not to force a book (especially one dealing with health and emotional healing) on myself.  When the time is right, I will pick it up.  All I could manage to read during the time were my mystery novels and biographies,  books that took me away from my life rather than forcing me to deal with it.

One night I was lying in bed too tired to be up, too awake to be sleeping and not wanting to watch a movie.  I attempted to sleep.  As I turned to lay my glasses on the night table, 10 Mindful Minutes was there where I had placed it months before.  I picked up the book and started reading.  I found it difficult to put down.

I learned that I needed to be more present in my life, practice mindful sensing (taste, sight, hearing and touch) and the importance of being positive.  I learned more about the brain and the “fight or flight” signals and how easily we can be hijacked by the amygdala in the brain.

The one thing that I know I need to do but am having a hard time getting started so that it becomes a routine is allowing myself ten mindful minutes where I sit and breathe and there are no other distractions.  It is probably the easiest thing to do but the hardest to discipline myself into doing.  Maybe now that I have said it and put it in writing, I can conquer it.

While the book is written with parents in mind for helping their own children grow and be a happier person, I think it is well worth reading for everyone.

Author Interviews

I posted today in Catch Up Mondays about dealing with the isolation of illness.  One of the things that kept me going was being able to read.  I am so thankful that out of all the chemicals I am sensitive to newsprint is not one of them.  I have been able to read books throughout my illness.  Of course I have since discovered the e-book reader and my Kindle has become my new best friend.

Recently I have begun to think about including a monthly book review or interview with the author of a book I have read.  I know this doesn’t directly have anything to do with the theme of this blog but since reading and taking myself out of my own misery has had a huge impact on my healing and emotional state, I want to try it and see how it goes.

My reading is eclectic.  I read mystery books, books that are funny, biographies, self-help books, poetry books, and books from others who are dealing with, or have dealt with, chronic illness.  Many of the authors I have recently discovered are not authors that are well-known.  I have some ideas formulating in my mind of books that I would like to talk about or authors I would like to interview.  My first step is getting a basic set of questions that I can tweak to fit the author or the particular type of book.

With all that is going on with the upcoming release of my book and extra days caring for my grandson while his other grandma goes on vacation (oh how I want a long vacation some place – but that is a topic for another post) this may be a while in the making.  I hope you all will enjoy sharing a little of what I am reading or have read that takes me away from my own worries.