Catch Up Mondays – Comparing this illness with cancer – revisited

This was originally posted on July 12, 2012.  Again, I stress that I am not minimizing anyone’s battle with cancer.   I was lost and no one seemed to truly understand what I was going through because what I was going through was not accepted or understood like cancer.

Back in the middle of this illness as I was losing friendships, losing my self and realizing not very many people really understood what I was going through, I began comparing my illness to someone with cancer.  What I wrote was in no way meant to minimize cancer (I have had my fair share of cancer scares.).

Not it’s not cancer

            Cancer patients take treatments and either

                        are cured or die at the end of so many months

            I don’t want to have cancer

            I don’t want the treatments but am not

                        afraid to die

            I will not die but how much

                        better will I get – there is

                        no answer

            No, it’s not cancer

            It is mold and chemical sensitivity

            Cancer patients, at least in the beginning,

                        can go out to the mall, to movies, to visit a friend

                        go on trips and stay in hotels

            I cannot go do all these things

                        and when I finish treatment

                        my limitations will not change

            It is not cancer

            Cancer patients are understood

                        because their disease is understood

            My disease is not understood by

                        many

            Few can fathom the world I have

                        been forced to live in.

            Few can understand that mere mold

                        can be so devastating

            It is not cancer

            My body is not ravaged by it

            My body has been ravaged

                        by mycotoxins – which

                        ironically can cause cancer

            I will not die and leave

                        this world for a spiritual one

            I will leave this world for a world of

                        shelter, loneliness, and isolation

            I will give up my “things” for ones

                        less beautiful and comfortable

            I will give up my pictures and

                        collections in trade

                        for their memories

            I will give up my lunches out with the girls

                        for a bowl of beans at home

                        by myself

            No it is not cancer

            But a different sort of cancer has taken

                        my life away and left me

                        caged and feeling very alone

A friend who also has suffered with the ravages of mold exposure and the loss of friendships, dealt with the isolation, and fought back recently sent me the following link.  While the link deals with what to expect when you are diagnosed with cancer, a lot of the same things apply to having this illness.  I was truly moved by what the author wrote.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

Back home (LDA Day 2 continued)

Bless my dear husband.  Once again, he drove me to San Francisco for my LDA treatments.  We left at 8:00 a.m. for an 11:00 a.m. appt.  The drive usually takes 2 1/2 hours giving him a little leeway with traffic.  Traffic was great and we got into the city an hour early.   Since we were early he decided to make a quick stop at the SF Giants’ store to look for some t-shirts.  He made it back to the car in plenty of time to get back on the highway and head to my doctor appointment.  Then we got lost.  Somehow we went the wrong direction and the highway was nowhere in sight.  We asked a taxi cab driver who was a jerk.  Then we got directions from city workers but I think we missed the last part of the directions because we still didn’t make it to the highway.  Finally my husband asked a security guard getting into his car how to get to the highway.  He started to give us directions and then said to my husband to just turn around and follow him and he would take us there.  I have no idea how much further out of his way he went for us but it was much appreciated.  With all the getting lost and asking for directions we made it to my appointment right on time.

I met with the new doctor and had to give him some background on me and talk a little about some questions I had regarding my protocol and if things had changed any.  He felt that because I had been on the therapy for five years that I could start adding foods back in at 7-10 days instead of 15.  PERFECT!  My daughter gets here about that time and I will not have to miss out on many foods because of dietary restrictions.  I really enjoyed this new doctor and look forward to working with him more.

The downside to my treatment, as it is every time, is the headache.  Oh the headache.  And the welts where the injections are given and the itchiness.  There is only one that actually gives me a lot of trouble.

My poor arm!

I am home and yes my headache is with me (nothing unusual about that).  I got it about 3o minutes after I left the office.  My brain is also a little fuzzy and my concentration is not so great.  On the positive side is that I am not itching nearly as much with the inhalant component of the treatment as I usually do.  Maybe this is a good sign that I won’t be flailing my arm around tonight to distract myself.  I am not allowed to scratch the wheals, put anything on them or ice them.

I ate my lamb stew on the way home as my dear husband munched on his Jack in the Box burger and fries.

I received three injections today.  In my left arm I received the Inhalants (pollens, dust, molds).

On my way (Day 2 of LDA)

Hello Everyone.

I just finished eating day two of ground lamb and hash browns for breakfast.  My lunch time meal of lamb stew is heating on the stove in preparation for the thermos that I have finally purchased.   My water is in the car, my ipod has been charged, and my Kindle is charged and loaded with a new book.   I am preparing for the 2 1/2 hour trip each way to get my LDA.  I am anxious to get it done and to be one day closer to finishing the critical 3 days and to getting all those yummy foods back into my diet.

Today I am meeting with a new doctor because my doctor left the practice.  I am looking forward to meeting the new doctor (a naturopath) and getting and having him sign off to continue with the protocol there.

I am not looking forward to the headache that usually follows for a day and the itching arms that usually last for 2-3 days.  In the end it is all worth it.  If I am not feeling too uncomfortable later today I will post more.  I will also try to respond to all comments as well.

What’s for breakfast?

Breakfast for LDA

Today is day 1 of the 3 critical day period for my LDA treatment.  I made myself a lamb patty and some hash browns.  My beverage of choice (or the only one allowed me) was a glass of water (Mountain Valley Spring Water in a glass bottle).   You can read more about Day 1 of the critical day diet and LDA on a previous blog post  here.

Let the lamb extravaganza begin!

NOTHING SAYS LDA LIKE THE SMELL OF LAMB COOKING IN THE KITCHEN!

My lamb stew ingredients.

Yes, it is that time again!  My housework is done and I am prepping for my three-day critical LDA (low dose antigen therapy) period.  The lamb fat is rendered into lard for my breakfast hash browns, the ground lamb is thawing for breakfast starting tomorrow, and my lamb stew is on the stove in anticipation of tomorrow’s lunch and dinner and lunch and dinner (or snacks)

Lamb Meat in the Dutch Oven.

for the next three days.  You can read more about prepping for LDA here.

Dinner is ready!

How is the Book Coming? When will it be available?

I have been getting these questions a lot lately from not only friends but family members as well.  I wish I had the immediate answer.  All I can say is soon.  I am patiently or impatiently waiting for the inside photos to be cleaned up and changed to black and white.  The whole project was put on hold when my friend’s paying job became overwhelming and then his computer died and he needed to have another one rebuilt.

The good news is he is back working on them.  I am not sure how far he is on the 50 photos he has to work with.  And I don’t want to ask because it will only make me anxious.  Once these photos are cleaned and ready I will submit them.  From what I gather it will take a few weeks for me to get a working copy to read and make any necessary changes to.  Then it is up to me to go through it and send it back.  We are near the end of June.  Without making a commitment to a release date, I don’t expect it to happen before September.

Thank you all for your support while I continue to write here and work on the book’s release.

An excerpt from Allergic to Life:

In my home I feel

like a stranger

Because of this here

I do not want to linger

Will I ever feel

at home and at ease

In this cold house

with this awful disease

My life has been

turned upside down

I now wear less

smile and more frown

Meeting with friends

to talk and shop

All these fun things

have come to an end

To their homes for visits

I cannot go

I sit at home and

they do not show

Friendship with me

is now a bother and chore

Special soaps and clothes

before they come to my door

Less and less will I

hear from them

For Rick and I it will

just be me and him

I guess I can’t

blame them for

I have really become

rather a bore

I haven’t been here

or there

I really have nothing

to share

They saw a new movie

or found a new place to shop

I got a new food and

found a safe mop

Catch-UP Monday: Why is that lady wearing a mask? A repeat

Me wearing my mask.

I have watched as little children innocently ask their mothers this very question. The answers vary from a mother suddenly noticing that I have a mask on and answering I don’t know to a mother replying maybe she is sick and doesn’t want to get us sick. My chemical sensitivities are such that to be able to go into the grocery store for a short period I must wear a charcoal mask to lessen the severity of what I breathe in and lessen my reactions to those chemicals. I have had people see me and suddenly veer off in a different direction for fear that I could spread some dreaded disease to them when in fact they are the ones I am protecting myself from (the cologne, laundry soaps, fabric softeners, etc.). When I was in Dallas in 2003 a friend and I who also wears a mask had made an excursion to  window shop at a store we had seen that had very nice clothes in the window.  We decided to stop because she wanted to see if she thought she could tolerate the clothes or if the store would be too fragrant for her to be able to get the smells out of the clothes.  I write about this in my book. 

By this time Lisa had begun gaining weight and needed clothes.  We had driven by this store that featured clothes in the window that she thought might be safe for her.  We decided to stop by there one morning.  So here we were both in our masks knocking on the door to get the clerk’s attention.  We finally got her attention and asked her to come to the door.  We wanted to ask her if she would be willing to bring something out for us to look at.  She cautiously opened the door; the whole time she kept looking at us in our masks and back to her register.  I think she thought for sure that we were going to rob her.  When we explained why we wearing the masks, she was very accommodating.  There was also a time when we were standing outside another store waiting for a clerk to bring something out and a man approached us and asked why we were wearing masks.  We tried to explain it to him.  So, he said you are allergic to perfume and we just said yes.  As he walked away he asked if we were sisters because we both had on masks.  That generated a good laugh by both of us.

The mask presents many issues.  In winter it causes my glasses to fog up.  In warm weather the heat from wearing the mask is so stifling that I feel as if I could pass out. 

Slush Heap

What is a slush heap you may ask?  In the publishing world a slush heap is the slush pile of rejected books in publishing companies.

For many reasons I chose not to submit my book to traditional publishers.  Among my reasons was wanting complete control of the content, not having to wait to get my story to the public, and worse yet  having it end up in a slush heap.

A fellow author, Rudi Fischer, has started Slush Heap through Google Hangout.  Slush Heap is a website dedicated to experienced writers, new writers, and would be writers.  This show will feature authors, publishers, editors, reviews, narrators, illustrators, and marketing experts willing to share their successes and failures.  The goal is to provide information for those who may need it most.  These hour-long discussions are recorded and available to view on the Slush Heap site.  Rudi is the author of Force of Fate available  as an ebook on Amazon.com.

I first met Rudi through a writers group on Linkedin.  Rudi has also been following my blog for over six months.  Today at 7 p.m. ET,  Slush Heap will be discussing book covers.  Rudi Fischer has invited me to participate in the discussion of book covers and the story behind my book.  I have accepted and will participate in the discussion.  I am looking forward to meeting and talking with Rudi.

I will post a link to watch the video when it is available.

Sneak Peek

I have so many draft posts saved that I want to talk about.  But I am still feeling under the weather and my brain just won’t let me read the articles that I linked to those drafts and come up with a coherent post.

Instead, I am going to give you a sneak peek of my cover.  I am also in the process of working out my webpage and awaiting the final photo enhancements to send in to the publisher.  Tomorrow I am going to see if I can get in soon to see my acupuncturist/osteopath to get a handle on my body aches and fatigue.  As soon as I can get it under control I will be back with more posts.

It’s My Blogiversary

A year ago today I started with an idea.  I wanted to begin promoting my upcoming book and I wanted to share what I have gone through so that others would know they were not alone.  I wanted to share what a mold exposure can do both physically and emotionally.  It seems like yesterday that I published my first post and this is my  285th.

I had no idea that in that time span I would have come into contact with such wonderful bloggers, authors and fellow sufferers.  In the short span of a year I have written 285 blog posts, had  over 14,000 views, attracted 78 followers and began following about 80 other blogs.  In this age of computers and the lightening speed of the internet, I have reached viewers from 90 countries.  Some of these countries with little known names like Mauritius and Macao.

I have also been awarded three blog awards:  The Reality Award, the Liebster Award and the Versatile Blogger Award. 

I look forward to another year of blogging and the debut of my book.  Thank you all for sharing this amazing journey with me.