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Saturday, December 5, 2009

Survival Experiment



Almost 25 years ago I brought my first child home from the hospital.  I had just turned 24 only the previous week and here I was with a newborn.  I did not realize until I laid her down on my bed to unravel the myriad of blankets that I was the last stop! The buck stopped with me!  Panic set in right about then.  I started to cry for her not for me.   Afterall I could not even make committments to my plants and keep them alive and thriving.  Most of them had been on life support numerous times barely making it back to green again. 

Flashbacks of dried up, lifeless, thirsty plants danced in my head.  I had to push these images out of my head and focus on the life that was now dependent on me. 

I decided that if I was currently her best shot in life, then I would Be The Best Mother and it would not matter if all went to hell around me.  Yes including the plants. 

I looked at my daughter lying so helpless and innocent on my bed and declared" I really hope you do have a better shot than the plants"!  She smiled up at me and then I realized we were going to survive all my insecurities and mistakes to come because she already had a sense of humor when she realized who her mother was. 

After that terrifying moment of realization came the true reality of life.  I was and always will be where the buck stops for my family. 


Sooo, this year I bought some bamboo plants for myself right after the 24 year old moved out to her own apartment.  Since I clearly seen that the baby that I brought home 24 years ago had survived and she was the one who had the worst shot being my first...I decided that I would give the plants another shot and I chose bamboo because they have the highest survival rate.

I bought 6 bamboo stalks and planted 4 separately to symbolize my 3 children and the dog and 2 together to symbolize my huband and I.  I placed them all in front of my brightly lit kitchen window. The reasoning behind the placement choice was 2 fold.  One it obviously had a lot of sun, but two was that the survival rate for each of them would be higher if I seen them up close and personal every day.  I would be able to water them as each one of them needed it. 

I very quickly realized that I made the right choices to keep them right in front of me each and every day.  They needed a lot of water, more than I ever thought.  I kept a close watch on them and took care of each of them with the same light water and attention.

As the months progressed the plants were not growing and thriving at the same rate even though they were getting the same care.  I checked to see if they were all getting the same amount of light etc and they were. 

My original plan was to eventually pot them all together once I had established their root systems firmly.  I was hesitant to pot them together until each one of them proved that they could sustain the move and that their root systems would not impede the other root systems in anyway.

Well I gave them all  ample time and I kept hoping the one plant that was on life support would make a comeback so I could put them together as planned. 

The test was going to be when I went away for a week and left them to themselves with ample light and water.  Well when I came back from my trip I knew it was time to pull the plug.  I truly was sad that I had to do this but I learned so much from this whole experience.

When I looked at the plants, I realized just as the sunlight and watering were the same for each plant  I  gave each of my children all the same of everything that they needed to thrive for their indivduality and their particular needs.

Each one of them have a firm root system and they are able to sustain the blowing winds of life because they have been given the gift of love by their parents who tended to each of their needs physically, emotionally and intellectually. 

The big test for my plants today will be if they can survive their move to the pot that put their root systems together.  Will their rooting sytems somehow learn to work together to make them stronger and survive as a whole.  I hope so !  I know it has worked for the five of us. 

Obviously I am a better mother than a gardener or ... is it that I Chose to be the "Best Mother "  that day almost 25 years ago and not the best gardener???

Remember we do not have to be "The Best" we just have to strive to "Do the Best" that we can do with what we have to work with and that has to be enough.

Look at me, my resume had nothing on it to equip me for the job I had signed up for over 25 years ago.

Thursday, November 19, 2009

This WAS part of my breakfast . this is called DISTRACTION!

Thursday, November 12, 2009

Comment on :New study: sports tied to bad behavior in some teens

@TheKidsDoctor New study: sports tied to bad behavior in some teens. http://tinyurl.com/yd7ypt8. Thoughts? @katiesheadesign

   I have raised 2 boys and a girl all participated in different sports.  I have observed various outcomes which at times included the following in my home as well as others:
   Too tired to do Homework which leads to :
anxiety, then insomnia, then irritability, then anger, then ourbursts, then discipline from parents, then rebellion.
   Its apparent that a pattern of negativity can be established if constant intervention  is not maintained by parents setting limits all the time.
  The other end of the spectrum is that when close management and supervision is established and maintained for the students,a very positive outcome can be the reality.
   The positive effects I have observed are that my children  (now adults)can function as being part of a team and therefore cooperate and contribute to the bigger picture in life.  Such as workplace situations, time management, people management, being aware of the needs of others. Just to name a few.

These are my thoughts and observations in response to the article referenced.

Saturday, November 7, 2009

A little about Me and KatieSheaDesigns

  

   I am part of something very big; I am a wife to my husband of 26 years, and for the past 24 years Mommy, MOM!, Motherrrrr, or on a very rough day Kathleen (when I have really gotten under their skin LOL)
   I am an entrepreneur since way back when.  I have instilled this desire in each one of my offspring.
   I homeschooled each one of them for various amounts of time, around 10 years collectively.
  According to my children way back then, we were the “different” family in the town :) LOL.
   I truly don’t mind being thought of as “different” because “different” delineates me, us from the rest of the family and the world. I have always taught my brood that what is good for each one of them individually is not always applicable for all of them collectively or others.

   I have seen clear evidence of this statement each and every day while I was homeschooling them. Why I say that with confidence is because I have taught 2 boys and 1 girl to read, write and rithmatic :). Each one of them learned what was being taught when their brains had the ability to process the information. We had many starts and many stops in different subjects.

   What I mean by that is that I followed a state mandated scope and sequence of what I “had” to teach “when” I was to teach it in that order. I tried it “their” way and when that was not the schedule of the said brain at that time, I would revisit it in a week, a month etc and have much more success. Well my children had keenly observed the success of this method and realize that they can be successful in whatever they try because they do not give up on the first, second or third attempt. This does not mean that they will be the best at whatever they are trying to achieve. It simply means that they are learning that there is a “Time for Everything” Eccl 3:1.

   So with all that being said… here “I” am being the entrepreneur that I have been told that I am blazing a new trail after this season of raising my children is just about closed. (Looking forward to giving cookies to my grandkids while my children reprimand me) :).
I have been told many many times that I tend to do things out of the regular order of life and yes I am starting a new business and career right smack in the middle of my said “life” , after I have raised my children and before I sign up for the AARP. ( a little Humor there)

   I will always be “Mommy, Mom , Motherr, and on a rough day Kathleen,  Kathhhh to my husband but now I am the Founder of KatieShea Designs.

   I will be introducing my designs very shortly and I invite each and everyone of you to celebrate the events of your lives with a “Rose designed specifically for “YOU” because there is only one “YOU” and a I would like to reflect your individuality, style, specific event/memory in the design you commission me with.


   I will treat each client with the individuality and attention that I expect .


   MY two motto’s in life: “Never accept poor service” and “Nobody is paying me to take my money”


   I plan to start introducing my designs right here on my Blog so my friends who follow me can be the first to see the kaleidoscope/collage of my designs.


   I look forward to your comments. And please leave your comments, I love to hear from you!!

Thanks for being a part of my life :)


   Mommy, MOM!, Motherrrrr, Kathhh,  on those rough days Kathleen!

 
KatieSheaDesigns

 
P.S.


I will be blogging next on why I am called KatieSheaDesigns and how/why this business was born.

Monday, November 2, 2009

Dust on the Ceiling Fan

It was Jan 2003 I remember distinctly.

My kitchen ceiling fan was very dusty. I looked up almost every day and made a mental note to clean those glaring white blades with the dust screaming Clean me!!! I really was irked that there was so much that was not getting tended to in my home.

I kept reminding myself that there were way more important things than dust, like my grandmother I was nursing back to health.

Grandma lived alone by choice. She was.. And still... is a feisty, petite, well put together 86 years old at the time. She looks way better than me even on her worst day. Her nickname has become "Grandma Clinique" obviously because of all the Clinique products she uses.

Well Grandma had a heart attack a week after she buried her younger sister in November 2002 and had quadruple bypass heart surgery the day after Thanksgiving of 2002. She needed to be taken care of when she was released from the heart step down program and nobody had room for her in their homes so... My husband and I transformed our newly built family room to Grandma's apt so we could take care of her. Sounds simple and nice right???

Grannie Annie is a compulsive neat nick who lives and dies by her stomach, the TV show schedule and her rigid schedule of life. She definitely came to the wrong place at my house.

My house was and is the "Circus". We have numerous pianos, keyboards, guitars, computers, art supplies, canvases, projects, fabric etc and visitors! You get the picture.

It was months of coming downstairs and praying she was still alive and she did not die in my house! It was months of medicine trials with reactions that gleaned heart stopping scary reactions. It was months of counting meds out 3X a day, and it was months of 3 meals a day on Grandma's stomach clock and showering her with sights I never wanted to see even in horror film!

My Aunts (who "did not have room for their mother in their own homes") used to tell me I was spoiling her by making her bed and serving her 3 meals a day delivering them to her recliner. I did not realize that they had inside knowledge to the reality that I was my Grandma's personal assistant and that she took time off from life to be taken care of like the "Queen" my Grandpa made her!

As this all unfolded, I was still taking care of my 3 children, my Husband, and heavily involved with a show that I was the backstage director/costume designer for.

My Grandma and my neighbors marveled at how many times a day my red van left my driveway scurrying to fill infinite requests and chauffeuring whomever wherever while Granma designed her menu and TV schedule for the day. Unbeknownst to me, Grandma was also keeping another schedule that slowly was revealed while she was doing her sick gig by me. Remember I mentioned Grannie Annie was... and still is a neat nick, well guess what? Grannie Annie was keeping a list of what "I needed to clean" only to be revealed at her own untimely discretion.

What do I mean by untimely discretion? Well while I was on all fours cleaning up the dog urine that my bichon involuntarily gave up because of a bladder issue, my grandma decided to sit in her chair and let me know that Her dinner "that was sitting only 3 feet on the counter, prepared by me punctually at 5:00pm, hot was getting cold! And...If that was not enough ...while I was cleaning up dog urine 3 feet from her and 6 feet from "her dinner" she said firmly! "When was I going to get her dinner from the counter and WHEN WAS I GOING TO CLEAN THAT CEILING FAN” as she pointed upward in my kitchen!!!

I could NOT believe my ears!! After months and months of devoting myself to the priorities of life and Grannie Annie being "the priority numero Uno" I finally wanted to just strangle her myself!

I adjusted myself and was determined to evict Grannie Annie ASAP. I gave her a rewarmed plate and told myself that the ceiling fan might never get cleaned.

When our eyes finally met, she told me that it was time for her to go home because obviously I did not have the time to do what needed to get done and having her in my home was too much for me because my ceiling fan had been dirty since she arrived and was still dirty.

Grannie Annie sent me to the store for her the following morning. I had not made her bed yet and she was not even dressed. When I arrived home I could NOT believe my eyes, her bed was made, she was dressed and her bags were packed and at the bottom of the staircase.

I asked if my Aunts were over and helped her. Grannie Annie stared at me and simply stated it was time for her to go home and obviously she meant right then, at that moment in time.

We stared at each other with our eyes locked not blinking for what seemed like an eternity.

All of a sudden I realized that Grannie Annie had been allowing me take care of her. All of our conversations came rushing back and swirling in my head.

Grannie Annie was the oldest of 7 in her family. She was her mother's right hand. She had been a caretaker most of her life. Her control issues stemmed from having to demand organization so everything and everyone could function seamlessly. Grannie Annie had lost her mother to cancer when she herself was in her early twenties. She became sister and mother to her siblings and her own children.

While Grannie was sitting in the recliner all those months, she shared so many stories with me that I would not have otherwise known if we did not have that time together.

The story that jumped out at me the most while I was staring into my grandmothers eyes was the one about her last visit to her home by her mother my great grandmother I never met.

She had told me this event repeatedly while she sat in "the Recliner".

Her Mother had traveled the train, ferry and bus to come visit her over in Jersey. When she had arrived she found a wonderfully prepared corned beef dinner with all the trimming. My grandmother made her mom sit down and be served her like a queen. Grannie Annie said that was her only memory of her mother ever sitting down to a dinner that was cooked by someone else and also her mother allowing her daughter to serve her. That was her mother’s last good meal and the last time she ever visited Grannie Annie.

Oh my goodness, I was floored. My Grandmother had NEEDED someone else to take care of her just for a short time. She was way way overdue! Nobody had taken care of her the way she needed to be taken care of since her own mother died!

It was as if she read my mind. She finally broke the silence and said " I cannot let you take care of me any longer because I will never want to go home." I started to cry and hugged her. I told her she did not HAVE to go home. She told me she did. “She had things to do”.

I smiled at Grannie Annie and hugged her some more.

Thursday, October 15, 2009

40ish Moms and perimenopause . What I'm in menopause!!!!

I just got off the phone with my best friend who is also 40ish, and realizing the same things as me.  I likened our lives to being put in a spacesuit and shipped off to Mars then dropped off. 

But.....before they open the hatch to drop us off we are told that we have to leave the spacesuit there and enter into this new environment completely unknown to us without the protection or the support of the space suit that enables us to get from earth to Mars. 

We are also told that we have to quickly become adept to the new environment with all of the factors that are so foreign to our bodies on earth.  We will have to breathe differently, find out how to live on this new planet and do it all ourselves etc.  This will mean dealing with our bodies reacting to all that is new and not be able to get any help while we are adjusting....sink or swim we are told.   Oh... and by the way we cannot feel sorry for ourselves, show any emotion, miss anything or anybody from earth we must just go on. 

And Yes one perk will be that we CAN have an interplatetary cell phone that we can only receive calls from the earthly people that need to ask questions or directions,,,just incase there were still some lose ends. It  should be NO surprise to us that we can only RECEIVE  "I Need" calls because that is what happened on earth.  Bonus:  if we receive too many calls on Mars we are then told  : "We did not do our job right on Earth".  I in turn am thinking... we did too much and that is precisely why we have been dropped off on Mars in the first place.   Just thinking outloud  ...clearing my throat......

We are told that all that we did on earth really does not mean anything because it really was all for nothing.  We were just foolish enough not to invest into learning about Mars while we were still  functioning in our earthly familiar environments.  The spacesuits were simply to make our transition FROM earth to mars as comfortable as possible for that brief time.  It was our jobs that we failed at ...not to have realized that all the while we  were on earth we should have been preparing for the next planet.

 Oh... by the way....nobody let us know that there was another planet we were going to be dropped off at after our usefullness was spent.

To all the good mothers and wives out there who have given selfishly to your family wake up and listen.  You too could be on Mars so do all you can to prepare for it.  Just in case....

Take care of yourself and your needs Now.  Do not wait til everybody else is taken care because ....everyone else will just continue to ask of you what you do not have to give so .....you take it from your reserves.  Then when the reserves run out you get to go to Mars!!!!!!!!!!!!!!!!!!

Oh and get an occassional phone call from earth.... :)

Wednesday, October 14, 2009

Anthonyism # ??? LOST COUNT

The other day my 2 oldest offspring were discussing "Why does Mom  make Anthony the 22 year old's lunch every day to take to work or college"?

Anthony (the 22 year old) replies to the older 24 year old sister (who lives in her own apt and still brings home her laundry and shops in my pantry and fridge)... Mom does not have any one left at home but me and she wants to .......NEUTER ME!!!!!   LOL LOL LOL    Well after laughing so hard we were crying, I explained to my daughter that he meant  NURTURE  HIM.  The sick part is I can follow his train and his train is not exactly on the tracks....

Example of Anthonyisms

Anthony  @17 years old was going to the prom and asked me to order him a Croissant.  I promptly ordered him the Corsage that he wanted.

Anthony @ about 11 years old was having a conversation with my husband in the car about entertainers that are quirky and demanding of others.  Anthony's response was:  I know Dad, there are a lot of Whitney Houstons out there.  My husbands eyes popped, rendered speechless by this child clearly speaking another language that he did not understand!!  So...  I translated for my husband from "Whitney Houston" to Prima Donnas because Anthony was really thinking about Madonna but meant Prima Donna aka "Whitney Houston".  Well you try to follow that train!!!  Exactly!

And  that was just a few :)

Again I am scared because I CAN TRANSLATE!!!

Tuesday, October 13, 2009

To Risk

To laugh is to risk appearing a fool,

To weep is to risk appearing sentimental

To reach out to another is to risk involvement,

To expose feelings is to risk exposing your true self

To place your ideas and dreams before a crowd is to risk their loss

To love is to risk not being loved in return,

To hope is to risk despair,

To try is to risk to failure.

But risks must be taken because the greatest hazard in life is to risk nothing.

The person who risks nothing, does nothing, has nothing is nothing.

He may avoid suffering and sorrow,

But he cannot learn, feel, change, grow or live.

Chained by his servitude he is a slave who has forfeited all freedom.

Only a person who risks is free.

Monday, October 5, 2009

A Dash, it says so much and so little.....


Monday, October 5, 2009


Quote #274


Monday, October 5, 2009


There'll be two dates on your tombstone/ And all your friends will read 'em/ But all that's gonna matter is that little dash between 'em...

-Kevin Welch
 
Yesterday was the 21st anniversary of my Grandfather's death.  I had been pondering IF I was going to go to the Cemetery yet another year and put the rock on the tombstone to say I was there (something my old Irish family traditionally does when they visit the dead).  I had wrestled with it because last year when it was 20 years that Grandpa had been passed  my Aunt Eleanor was still alive (my mother's youngest sister) and now she is buried almost right along side my Grandpa.  I have been to the cemetery this past July 5th and already experienced her tombstone and I trembled then.  It was surreal to me that SHE was in the ground ceasing to exist.  

Back to my Grandpa.   Grandpa had been THE most important man in my life until I met my husband.  Grandpa was always there for me.  Towards the end of his life we were even more close than when I was growing up.  He loved my husband and was thrilled I had gotten married to a "nice man" like my husband.  He loved his great grandchildren and wanted daily reports on their progress.  Hence the Daily AM phone calls, always following up on the children, how and what I was doing, advising me and researching whatever needed to be found out for me or the children.  My Grandpa was one of a kind.  He did not have a college education because in those days you did not get scholarships for track and football and his immigrant parents made their way here, thats where it stopped.  So he shared what he had with us.
By the time I was in my teens I knew so much about WWII.  We sat for hours as Grandpa explained in detail the different battles that had occurred.  Some combat he partook in.  The Kamikazee he shot out of the air that could have sunk the whole battle ship he was stationed on. 

You see Grandpa was an unusual soldier.  He went into the War at 30 years old and 3 children home.  He said every day as he went to work in NYC while the war was going on; people stopped him wherever he was and asked WHY a big strapping young man like him was not serving his country.   He was torn between country and Family.  Then they were starting to call men in and his  draft number was coming up soon, so he enlisted in the Navy rather than be drafted.  He was so upset but rather than be put wherever the military decided to assign him, he signed up.  He felt the navy would give im a better chance in coming home alive to take care of his 3 daughters and wife.  


Fastforward, he obviously made it and lived to have  granchildren and great granchildren.
I grew up with an unstable (unaffectionate towards me) alcoholic father that was unpredictable in all things My alcoholic father singled me out to corporal punish and make me an example all the time.  He loved my sister because she was this little delicate blond who idolized him no matter what he did to me, my mom , her or my brother.  I became the defender and the confronter and my Grandpa did not know the full scope of things that happened to me until I was much older.  When my parents split, I had been traumatized because I witnessed and stopped my Father from murdering my mother and my baby brother when I was 6 years old.


After that horrible day, I had closed up to all male affection.  It took years for me to even allow my Grandpa to hug me.  He worked hard during this time to draw me out and respected my space.  He knew that I had been violated emotionally and physically and it would take time to reach me if at all.



So.....We played endless word games and we drew together on the heavy cardstock he brought back from the book bindery. He always brought all kinds of books for me to read without covers on of course, because thats what had to happen to the discarded books before they left the factory. He always told me I could do whatever I set my mind to do because I was a thick Irishman LOL. Todays age it means stubborn and I have also been told a steamroller by others. I guess my Grandpa chose to see this as a positive attribute of mine that some see as an exhaustive detriment.


  He always cheered me on with any accomplishment whether it be scholastically, sports, writing awards etc.  He made me feel valued, respected and that it mattered that I was even born.


This is how Grandpa affected my life and I am just a small piece of the dash on the headstone.



 That dash on the headstone between his birthday and his death represents so much life. Its amazing that when all is said and done, a DASH can be so powerfull, so final and so cold.

Friday, October 2, 2009

If you could relive 5 minutes ......

If you had the opportunity to be able to go back in time anywhere in your life and relive  5 minutes......

What 5 minutes would they be?  

My 5 minutes would consist of dividing my 5 minutes by 3.  I have 3 children you see and they are grown.  I would take 1 minute and 33 seconds to hold each one while they were infants.  I would hold them real close, kiss them, breathe in their unique baby scent, rub my face against theirs and completely drink in their innocent little faces. 

 If I could relive just 5 minutes.....

Wednesday, August 19, 2009

The most valuable gift .

The most valuable gift . To not only be heard, but..... to be LISTENED to.
"Kathleen DeCosmo"

Tuesday, August 11, 2009

Hello,

The following is a call for help in achieving a possible walk on part on Madmen the smash hit on AMC . The open Call is for a opportunity for a walk on part for Season 4. My oldest and my youngest children are both actively pursuing a career in the arts. They are both studying in NYC.

I have decided to put this on my blog to try to help my children get the word out. The site to vote on seems to be having some problems with getting overloaded and had repeatedly been offline today. If you wouldn't mind terribly trying more than once if this appears to be happening when you try to vote. Each e-mail address is able to vote only once so may the best man /or woman covet your vote.

Thanks for all your Help!!!!!!!!

Kathy






NEED YOUR HELP
today Aug 11th 2009 before 12:00 tonight!

There is a TV show Mad Men on AMC (promo poster below) about Madison Avenue ad men in the 60's.
Not only do I love the show but I love the era!

There is an open casting call for a walk on role--all you had to do was fill out your information and upload an original "Mad Men-esq." photo of yourself... so I did! This isn't just an I want to be on TV stunt. My free time goes to studying acting/theatre in the village and would really love the opportunity to take it further. Below is my photo (set to look like a Polaroid) and the direct link to it on the AMC website:**note: if the link doesn't work its because the website is temporarily down**
The entries with the most votes / stars (up to 5 stars) have the best chance--according to the way of the contest.
Please, take a minute and click on the following link to vote for Elizabeth Decosmo: AMC » Mad Men Casting Call » Browse Photos
and/or

and my brother Ryan Decosmo
Ryan his link to vote here: Click here: AMC » Mad Men Casting Call » Browse Photos

Each computer address (ie: home, work, blackberry) can vote once a day.

I only became away of the casting call last week, took photos this weekend and posted last night so it's the LAST DAY! The contest closes at midnight tonight. So, please click on 5 stars and help my entry! :) Pass it along to everyone you know and have them VOTE as well. I really appreciate it.

Thanks! - xoxo Elizabeth DeCosmo edecosmo@gmail.com
Also viewable on: Facebook
PS: a lot of people are trying to get votes in before midnight, so the website is crashing periodically. Please, if you have the time, keep trying to get through! Thank you, thank you!


Monday, May 25, 2009

LDN beginnings

I will be one of the guests today on Mary Boyle Bradley's blogtalkradio show discussing the Drug LDN (LowDoseNaltrexone) that has helped my daughter and best friend lead a normal life.

Mary is the author of "Up the Creek with a Paddle" the book that intrigued me, made me laugh, cry and gave me my hope back that both of these ladies that are so important to me could possibly have the shot at a close to normal life.

I want to say that Mary has done an extraordinary job writing this book. It drained my emotions to write just the little without all the details timeline to help me with the radio show. I experienced a small glimmer of how time consuming and emotionally draining it is to drudge up the memories of past pain as a caretaker let alone the victim of any of these dieases.

I decided to share this timeline on a newly formed blog I learned to make last night LOL. There is a first time for everything folks and novice as I am I am willing to share with you and also all of my flawed grammar and punctuation :).

It was tough to decide how to approach this and where to start becasue the story began long before 2001 but we just did not realize this until after the facts presented themselves in the form of an onslaught of symptons with no relief for years for my daughter.

So I chose to begin with Spring 2001 because this is the point in her life that her symptons worsened and became unmanageable to lead a normal teenage life.

I hope that this brief timeline review could possibly help someone out there in any way.

Spring 2001 : severe pains in lower right quandrant. Tested for: Helicobacter Pylori -results negative. Suspicion IBS

2001 Summer
Blood work: IGA IGG levels indicative of Celiac sprue
2001 Fall : Columbia Presby seen Celiac Dr. confirmed Celiac by bloodwork. My daughter did not want to have a colonoscopy. Started eating Celiac way. Fell off the wagon eating the celiac way. Struggled for the next almost 2 years eating and going to school.

2003: graduated HS and heading to University. Became sicker in the summer. Took the semester off.

Jan 2004: Started College online. Struggled the entire year to feel better. Began eating celiac way again in fall. Was desperate to feel better.

2004 Dec: 5’ 7” and 83 lbs from eating the Celiac way. Almost died.
Dec 28th 2004 : Emergency room scan revealed Crohns,
Dec 29th: Colonoscopy done with pediatric instruments and then confirmed Crohns with multiple fistulas present in the ilieum.
IV for days… heavy steroids and a reaction in the middle of the night. Thought I was losing her. Prayed over her all night. We got thru the night and she was able to start eating jello the next day. We took her home on Jan 2, 2005 on my Birthday. It was the best Birthday present to have my little girl alive.


2005
A year of tons of meds and not a lot of progress to remedy all the symptons.



Medicine diary written by my Daughter

In/after the hospital in '05
-cipro
-flagyl * idk about the dose for either of these antibiotics. I think one was like 375mg. that number is stuck in my head & I was on them for about a year & 1/2
-prednisone * I think something ridiculous like 300mg for a short time, then 100mg for a long time, eventually stepping down, but often having hiccups.

Eventually got off the steroids, then was stepped down off the cipro & eventually the flagyl...very slowly & I remember being off the flagyl something like 2week, then having to go back on the lowest dose bc my body wasn't having it. -- during the stepping down of the drugs they were trying once maintenance drug after the next to help me get off & to then keep my body in check.

I don’t remember all of them, there were definitely several. There was..
-aciphex, which I don’t believe lasted that long
-6 MP, the standard maintenance drug for crohns, which sent me into the ER with pancreatitis (I fell in the "grey" area of the Genetic pre-test)
-pentasa, which rendered me a walking zombie. Dropping my blood pressure and causing me to be extremely dehydrated to the point that I was all veiny, weak and had frequent panic attacks. I practically lived on xanex when taking this drug.

Then came my miracle drug, remicade. Started January of '06 and continued (on the same dose) until October of '08 when its effects began to dwindle . This enabled me to come off all other drugs, including my Zoloft with the exception of 25mg every OTHER day--because, for some reason, that little bit keeps my stomach/panic attack in check.





2006

Started Remicade Jan 2006

I began researching an alternative to remicade after my daughter was on for about a year which was the beginning of 2007. Our aunt was also on this drug but she had a form of arthritis I think. She cautioned and advised strongly that my daughter take milk thistle along with this drug to reduce any liver problems. Our aunt started to have problems with the drug after marking her 2nd full year hence me realizing the honeymoon would be over for us in about a year bringing us to and stretching it to the middle or end of 2007 based on my calculations of genetic disposition for allergies .

The summer of 2006 august the family went to Myrtle beach . Prior to leaving for Myrtle beach we had my daughter tested for antibodies of remicade. She was having severe itching all over her body and eating ice constantly. I felt like her body was beginning to reject the remicade but she was vehemently in disagreement with me. I insisted she get tested to see if she was in rejection. It is done with a blood test to see if there are antibodies present. She was miserable and wanted to fly home. We did not want her to be alone in this condition. We decided to leave a little early and since we drove we had this luxury. As we were preparing to leave my daughter while showering called my name. When I went into the bathroom she said she was going to pass out, then she did in my arms and I did not feel any vital signs. I screamed for my husband who tried to revive her. Not responding he threw her over his shoulder and for some reason she came back. The ambulance arrived and her BP was very low as well as her heart rate. She was brought to the hospital and was stabilized for the trip home. We were going to fly her home but she was afraid and wanted to stay with the family.
When we arrived home we brought her to the gastro who proceeded to tell us it had nothing to do with the remicade. She refused to get off the remicade because he explained that if we were wrong about her body rejecting it there was a strong chance she would not be able to receive remicade again or if she tried to resume after a lapse of time not taking the remicade her body most definitely would form antibodies.

We changed gastro DRS. Our new gastro watched her closely. She was having narrowing of her stools. He was very concerned. He performed a procedure on her and deducted that she needed a major surgery which might have resulted in removing part of the small intestine closest to the ileum which could have resulted in needing to wear a bag on the outside of her body maybe permanently. Our Dr was quite shaken up. He researched who was capable of doing the best surgery for this scenario. He found only 2 Drs that he felt very capable of possibly preventing her from this grim scenario. We went to Cornell and to our surprise the Dr. was very optimistic and decided to just to exploratory and maybe a repair as he saw fit or…. do nothing after he was in the the operating room based on what he finds and reschedule her for the BIG lifechanging surgery.

Jan 4th 2007

We braced ourselves and had so many people all over the world praying for her.
When the Dr. came out of surgery he told us that when he went in he simply had to remove scar tissue that was very close to the ilieum and she was very lucky. That was all that needed to happen because she was all healed up inside from the remicade. She needed to go to Cornell as needed for a very simple procedure he could perform in his office if he deemed necessary if she started having the same symptons was his recommendation. My husband and I were calmly suffocating screams of joy that she did not have to be cut up and wear a bag on the outside of her body for who knows how long if not indefinitely.
After that I promised myself that I would find an alternative to these drugs because I was afraid what would happen when and if they began to fail her.
I was driven and spent hundreds of man hours researching. I joined every group in addition to all the other groups I previously joined. Spoke to so many patients with auto immune disease. Typed in so many queries into the browser that I literally fell asleep with my head on the keyboard so many nights. I could not rest until I found something to “go to” for my little girl.
It was Oct 2007 and I was in some support group site when I stumbled on something called LDN. I read and became intrigued by what the patient was talking about.
I typed in “LDN” . I came up with LowDoseNaltrexone.org and of course I drank in the whole site which led me to dig some more and find the book “Up the Creek with a Paddle” By Mary Boyle Bradley.
I was so excited I needed the book at that moment.!! I got on the phone and tried to track a copy down within the hour. Unfortunalely, I had to order online with expedited delivery. I ordered 2 copies, one for me and one for my best friend who has MS and was struggling with a very bad October. I was hoping that she would come out of October symptom free and wanted her to read the book with me and possibly consider this treatment for herself and I wanted my daughter to read the book and consider it also.
Well I read the book twice underlining and highlighting as I went. My friend was having some symptons which made it difficult to read comfortably so I started spitting out the knowledge I gleaned from the book until she was able to do a full read herself. We spent a lot of time discussing the book and LDN.

Jan 2008

My friend lost her vision again. I told her this would be the time to try the LDN. We went to a medical Dr. in the area to try to persuade him to give us a prescription for LDN. He wanted to give her prednisone . He would not give the prescription although I had sent him all the Info prior to the appointment and had more info with us at the appt. He said would not prescribe this off label and he really pushed the prednisone that we did not accept and walked out.
I looked around for a local DR. to prescribe. I found Dr. Sullivan in Mechanics PA.
We made the phone appt and faxed the paperwork. We had to wait almost 10 days for the appt. I was getting nervous because I felt the window of opportunity closing to regain her vision fully. I had read up to 6 weeks from onset of the sympton you had to possibly reverse the symptom.

My best friend with MS began LDN : beginning of 2008
1st dose
Vivid dreams and I think a little trouble sleeping if I remember her saying that
No change with vision

2nd dose 2 pills
After starting 2nd dose the 12th week of LDN .........VISION RESTORED!!!!!.

3rd dose 3 pills 4.5 mg
Tingling began in hand then worked up the arm then the rest of the right side feeling returned after 8 years absence. This was not even on the table as a hope of any feeling returning. What a beautiful surprise gift!!!
Doing very very well…… It is May 2009 over a year on LDN!!!

Back to my daughter

Summer/Fall 2008

The length of the remicade being effective was now somewhere between 4-6 weeks. She usually went 8 weeks between infusions. The Dr .was talking about either increasing the dosage or giving the infusions closer together.
Remicade infusion June 20 something
Car accident July 8th side swiped truck changing lanes. I started to worry that it had something to do with her health, then dismissed it as me obsessing.
Skin breaking out with tiny bumps, bathroom trips increasing and lasting long in duration, trips to the dermo, gastro etc. Sometimes Dizzy, feeling like blacking out, just feeling lousy. Had to refrain from driving during those symptons.
Oct 7th Remicade infusion
Oct 8th car accident side swiped truck changing lanes.
I was concerned that her peripheral vision was being affected by the remicade. I sent her to a specialist to make sure. All was well with her eyes.
She was due for an infusion at the end of December. A decision had to be made.
I encouraged her to try the LDN at this point right before she was due for the infusion because by my calculations she would be in the middle of the 2nd dosage change of the LDN and probably feeling its benefits before her window of opportunity to do the remicade would close leaving her with an antibody problem. It was the TIME. We made the appt. and she began.

My Daughter’s update written May 25th 2008

Started LDN Dec. 20 '08. I felt like crap for months. LDNt really didn't do anything until I was on the full dose and even that took awhile, probably in part because of my always low iron. LDN works, in the sense that it keep my bowels moving and my weight has remained "stable." But in the beginning I did not have an appetite (as predicted), which I battle to begin with. I hardly ate so that only made me weaker. Eventually I stopped being repulsed by food (I think around the fully dose) but I still rarely get really "hungry" like when I was on remicade.

When I was on the remicade, before the last few months, I could eat almost anything (my allergies & things like corn or overly fried foods aside) without any repercussions. Maybe a short feeling of being "full" at most & only because it enabled me to really EAT, like I hadn't in years. But I never really felt uncomfortable or like I had to run to the bathroom after eating. Also, my stress did not send me running to the toilet.

On LDN, not the case. I go more regularly than on the remicade (which I think is a good thing, some people may see it as a symptom...but I prefer to feel cleaned out). However, I am back to being uncomfortable and/or having a distended stomach after almost EVERY meal... It inhibits my eating because I do not enjoy that feeling. If I could skip meals & not get weak/nauseous I would.

One thing I noticed fairly quickly with LDN was my skin. On remicade (at least I always thought it was remicade but had no way to really know) it didn’t heal like it used to. My face would get irritated easily & bumpy. Nobody else would notice it & you all would say I was crazy when I said my skin was in bad condition but I knew what it was supposed to look like. My skin has been healthier, smoother and just overall calmer since I switched to LDN (or discontinued the Remicade).

I think the true test of the LDN will be what I feel like after my iron is raised by the infusions scheduled. Perhaps that will help, or maybe I will have to find something to take in addition to it... or just (gasp) change my lifestyle entirely. I am hoping I don’t have to do that, being that I am so picky and have so many allergies. I did really enjoy that about the remicade, being able to eat without feeling like I can’t move afterwards. oh well!


Author’s notes


· If my daughter had not taken the Remicade which afforded her the time to heal and get her in a good place internally and emotionally then getting on the LDN in the state she originally was in Dec 2004 would have started her, and kept her, in the particular stage of the disease. Although I was against her taking Remicade, her disease had progressed so far along because it originally was diagnosed as Celiac that she ended up healing while on the Remicade bringing her to an excellent starting place to begin the LDN. All God’s perfect timing.

We will follow up with more updates as the months unfold to be helpful and encouraging to anyone else going thru an autoimmune disease and is ambivalent about making the switch to LDN.

If you know someone struggling with an autoimmune disease let them know about this Drug and where you can find all the information is http://www.lowdosenaltrexone.org/ and join the broadcasts every Tuesday @ 1:00pm EST @ www.blogtalkradio.com/Mary-Boyle-Bradley

God Bless

Kathy Decosmo