Category Archives: Catch-Up Mondays

Mondays, I will post older posts for my new followers and visitors.

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.

Catch Up Mondays: More Reasons To Crank Up The Stereo – revisited

This is a reminder that I need to crank up my stereo especially while I am sitting here in the office trying to be productive.

There was an article in Conscious Living linking music to increased immunity.  When I am down, I want to listen to music.  Not just any music.  I want music from my high school and college years.  Music from before I got sick.  Songs that when heard can transport me back to a very specific time in my life; a carefree time when I am healthy.

My friend Liz recently told me that she had heard about music therapy and Alzheimer’s Patients.  The theory was that if music was played from a time when the patients were younger, thought memories could be evoked.  I found this information on the Alzheimer’s Foundation (Most people associate music with important events and a wide array of emotions. The connection can be so strong that hearing a tune long after the occurrence evokes a memory of it.)

This is all the more reason for me to blast the oldies when I am home by myself or to download a few of these to my ipod and stick my ear buds in my ears and listen even when I am not by myself. I hope you enjoy my selections from my past.

Maggie May by Rod Stewart takes me right back to a local drive-in hanging out with friends from school. 

There are many more songs that can take me back to a particular time and place. Recently my sister and I were talking and reminiscing about songs on our drive back from the Daffodil Festival and Daffodil Hill. One of the musicians we began thinking about was Gordon Lightfoot. As we drove home, we tried to remember all the words to this song. I was a senior in high school about this time and my sister was a sophomore.

From my college years is Roberta Flack

I was reminded by Roberta Flack from acflory at Meeka’s Mind and again about Gordon Lightfoot by Anneb54

So what songs would you BLAST from your stereo? What kinds of memories would they bring back to you?

Catch-Up Mondays: I just want a new nose – revisited

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.

Click to show "Human nose" result 3

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.

Catch-Up Mondays: If I Only Had A Brain!!! – revisited

I originally posted this  on February 28, 2013.  I have been posting lately on how MCS affects the brain as well as re-blogging about what others have posted.  I have posted about the loss of words I experience and how I type words wrong consistently even though I can spell them in my head, spell them out loud and hand write them with complete accuracy.  Today for Catch-Up Monday, I am sharing the following post.

BRAIN FOG, BRAIN FOG, BRAIN FOG

I have talked about this so many times and have read posts from other bloggers talking about the wonderful world of brain fog.  I struggle with memory (short-term) and finding the right words when talking.  Worse yet if I am carrying on a conversation and get the slightest interruption, I have no idea what I was just talking about.  Sound Familiar?  This happened a few days ago with my friend Liz.  This time it was her trying to remember what we were talking about.  What did I do?  I started humming my theme song “If I Only Had A Brain” from the Wizard of Oz.  The only part I could truly remember was the title of it.  She couldn’t remember all the words either.  So to you Liz, here are the words.  Maybe next time we can actually sing it together rather than just hum it.

Lyrics to If I Only Had A Brain :

(Scarecrow)
I could wile away the hours
Conferrin’ with the flowers
Consultin’ with the rain
And my head I’d be scratchin’
While my thoughts were busy hatchin’
If I only had a brain
I’d unravel any riddle
For any individ’le
In trouble or in pain
(Dorothy)
With the thoughts you’d be thinkin’
You could be another Lincoln
If you only had a brain
(Scarecrow)
Oh, I would tell you why
The ocean’s near the shore
I could think of things I never thunk before
And then I’d sit and think some more
I would not be just a nuffin’
My head all full of stuffin’
My heart all full of pain
I would dance and be merry
Life would be a ding-a-derry
If I only had a brain

//

(Scarecrow) I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts were busy hatchin’ If I only had a brain
I’d unravel any riddle For any individ’le In trouble or in pain
(Dorothy) With the thoughts you’d be thinkin’ You could be another Lincoln If you only had a brain
(Scarecrow) Oh, I would tell you why The ocean’s near the shore I could think of things I never thunk before And then I’d sit and think some more
I would not be just a nuffin’ My head all full of stuffin’ My heart all full of pain I would dance and be merry Life would be a ding-a-derry If I only had a brain

//
[ These are If I Only Had A Brain Lyrics on http://www.lyricsmania.com/ ]

BRAIN FOG is like having my head all full of stuffin’. What do you do when you cannot remember a word?  Or when you get lost in the middle of a conversation?

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.

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 1

Animated Crockery 2

Animated Crockery 2

Animated Crockery 3

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.

Catch-Up Mondays: Life is What Happens – Revisited

This was originally posted on February 19, 2013.  I have often used the term I would have done it but life got in the way.  How many of you have had life get in your way and drastically alter your plans?  We can either become a victim or a survivor.  I choose to be a survivor!  How about you?

I was reading a book (one of my mystery books by Tami Hoag). As I was reading, I came upon this sentence:  Life is what happens when we’re making other plans.

This pretty much sums up my life.  I was busy making other plans – starting back to work, my daughters were finishing high school and I was looking forward to summers doing fun things and the possibility of traveling with my husband.  Then “life” happened and my life turned upside down.  I became ill, work eventually ended and the possibility of traveling suspended.

We always thought there would be plenty of time to take those trips.  The girls would be grown, we would be closer to retirement, and would have the time and hopefully the income to do those things.  Looking back I wish we hadn’t put so many things off until later.   Many of those things are now lost but I can focus on what we can still do – day trips to the beach, trips to the mountains, any where we can go in a day.  If the day is nice and sunny and I am feeling well, I want to go, go, go.

I am sure many of you can say the same thing.  We were busy making plans and life suddenly changed all that.  Illness struck and changed everything without warning.

My words to my daughters is to enjoy life.  Make plans but don’t postpone doing things; the things you love and want to do.  There is no time like the present because who knows what the future holds.

 

Catch-UP Mondays: Cookie Baking and True Friendship – revisited

While Christmas has past and so has my Easter cookie baking, I wanted to share this with all of you.  There is nothing like true friendship and a friend who will do “whatever it takes” to be in my house and participate in normal activities.  Thank you Victoria for being such a dear and faithful friend throughout all of my ups and downs.

Hello Everyone

I have talked many times about friendships and what it takes to be my friend or the friend of an environmentally ill person.  I have also talked about Tyvek being this mold survivor’s best friend because it allows others to come into my home without risk of bringing mold in on their clothing or fragrances from their laundry products.

Today my dear friend Victoria came over for a yearly ritual of Christmas cookie baking.  We bake all day and then give away most of the cookies.  It is the friendship and the tradition of baking cookies that we love.  We talk and chat over the roar of the mixer and the oven timer going off.  It is the one day we have no other agenda than to visit and create something to give away.

Several years ago Victoria gave up her daily routine of putting on her favorite perfume before heading off to teach her classes.  She wanted to be free to stop by and visit me anytime she wanted and wearing her favorite perfume restricted her visits.  I am so thankful for this kind of friendship.

I digress a little to tell a story about going to her home for an outdoor party during the summer.  Everyone was told not to wear perfumes to avoid getting me sick.  One friend of hers forgot.  I thought I had sat far enough away from her when the coughing began.  The horrible gut wrenching coughing that does not stop.  We had to get me the heck away from her.  I was moved far out into the yard and had to take both my inhaler and a histamine injection.  Of course Victoria’s friend felt horrible.  What did Victoria do?  She sent her friend upstairs to shower and then gave her clothes to put on that didn’t have perfume on them.  This friend of hers always brings that story up when someone asks if I am really that sensitive and tells them about the day she almost killed me.  And she has never forgotten about the perfume since then.

Ok, back to my baking story.  Victoria and I baked 12 dozen cookies today (brown sugar shortbread, sugar cookies with sprinkles, angel crisps and butter cookies).  We had attempted another butter cookie that was supposed to go into a cookie press (it came out in a mess).  The recipe also suggested a pastry bag, it wouldn’t go through the decorating tip.  We decided to just make balls and bake them.  That didn’t work very well either not to mention that we had the bright idea of adding food coloring to them to make them pretty which for some strange reason the red dye turned the dough this ugly orange.  As much as I hate to waste food, the dough was tossed and chalked up to an experiment.

My half of the cookies are all boxed up and will be given out or frozen for company if we should have any.  Below are pictures.  Note that I can be seen in my jeans, shirt and Christmas apron and Victoria is wearing the latest in Tyvek fashion.  How many of you have friends that will go this far to be able to bake with you in your kitchen?

Victoria and I baking in my kitchen.

Victoria and I baking in my kitchen.

Our strange colored dough.

Our strange colored dough.

IMG_0547

 

Catch-Up Mondays: Sulfites and Drugs – revisited

This is part four of the four-part series of posts on sulfites.  The staggering number of drugs that contain sulfites as a preservative is unbelievable.  I am sure this list is not complete but it gives you a good awareness of how far reaching sulfite use is.

I know many of you out there might not use medications. But at some point in your life, there may not be an option in order to stay alive. I have discovered that there are medications that contain sulfites. I am sure this list is by no means complete as new drugs and variations of those drugs come on the market daily. Following is what I have learned about drugs and sulfites.

Bronchodilator solutions for asthma

  • Adrenalin chloride 1:1000 concentration
  • Bronkosol
  • Isuprel hydrochloride solution

Topical eye drops

  • Pred-Mild
  • Pred-Forte
  • Sulfacetamide
  • Prednisol
  • desamethasone

Injectable medications

  • Amikacin
  • Betamethasone phosphate (Celestone)
  • Chloropromazine (Thorazine)
  • Dexamethasone phosphate (Decadron)
  • Dopamine
  • Epinephrine (Adrenaline, Ana-Kit, Epi-Pen)
  • Garamycin
  • Gentamycin – I have taken this before and reacted.
  • Isoetharine HCI
  • Isoproterenol (injectable)
  • Lidocaine with epinephrine (Xylocaine) When I needed this before, I had to get it preservative free.
  • Meperidine (Demerol)
  • Metarminol
  • Norepinephrine (Levophed)
  • Procaine (Novacaine)
  • Prochloroperazine (Compazine)
  • Promethazine (Phenergan)
  • Solutions for total parenteral nutrition and dialysis
  • Tobramycin

General Anesthesia Drugs

Sites I visited to get my sulfite information:

http://www.webmd.com/allergies/guide/sulfite-sensitivity

http://ww.sulfites.org/sulfite-foods

http://nutrition.about.com/od/recipesmenus/a/organic.htm

http://www.allergy-and-diabetic-health.com/sulfite-free-foods-no-way-out-to-survive-the-fight-goes-on.html

http://www.allergy-and-diabetic-health.com/sufites-in-bleached-sugar-beet-and-cane.html

http://www.wikihow.com/Live-With-an-Allergy-to-Sulfites

http://allergies.about.com/od/foodallergies/a/sulfites.htm