My name is Nita. Until 2003, I was a very busy legal assistant in Texas, a guardian ad litem for FOCAS (Foster Children’s Advocate Services), a sunday school teacher in our church’s Youth Department for 12 years. I was in a BUNCO club in my neighborhood and ran a successful small embroidery business out of my home. I am married to a retired police detective. I have two grown children and 5 wonderful grandchildren. The law firm I worked for at the time allowed a dangerous situation to continue for six months from the date of my first report of the situation. Once action was finally taken, my health slowly began to decline.

I have had every (autoimmune) diagnosis in the book since that time. In April 2011, my P.C. sent me to a specialist. Four days before my first appointment with the new doctor, I began to collapse. Since my diagnosis mid-May 2011, most of what I know about Myalgic Encephalomyolitis, HHV6 and Lime Disease has come from my own research. Doctors don’t know much and patients know even less. Most days I feel like a walking dead person. When we say “fatigue” we are not talking about having a hard day at work, or busy trip to the mall. The best way I can describe the kind of exhaustion we are talking about is being “tired to the bone”. When I collapse, I have not fainted. It is like everything is fine, then suddenly the urgent thought enters your head that might sound like “OMG, I’m going down”.

One morning before I quit working, I got up, dressed, got my purse and was ready to get in the car. It was approximately 7:45 a.m. when suddenly, I had no choice but to lie back down. I woke-up at 11:00 a.m. with my purse still on my arm, boots still on my feet. Another time, about halfway to the law office where I worked in Downtown Dallas, Texas, I pulled into a McDonald’s parking lot and took a 30 minute nap. Two or three years after leaving my legal career, my son asked me to help out at his second Chiropractic office. I really wanted to be there for my son, so I agreed and I really felt I was up to it. The drive to the new office was a pleasant 10 mile trip from our new home in the forest to a nearby small town. I only worked from 8:30 to noon. Many times, about halfway home, I would find myself praying that I would make it home before having to pull over on the side of the 2-lane country road to take a nap.

Because of my illness, I wanted to move from our home in the city to a more quiet and simple life in the middle of the forest with no nearby neighbors. I really thought I was going to die and the home God lead us to was the perfect place for the new home that I called my ”hospice”. On the day we closed on the sale of our house in the city, we were asked to be out of the house for awhile to give the new buyer and his realtor a chance to do a walk-thru of the house before signing the papers. After waiting a couple of hours in the car outside the house, I got out, walked through the back door and, without stopping, I announced to the two strange men in my kitchen that they were welcome to continue with their walk-thru, but it was urgent that I go to bed. I couldn’t even tell you what the two gentlemen looked like since I didn’t even take the time to stop to address them. I had merely made my announcement as I continued to my bedroom. I woke up 12 hours later and realized I hadn’t even bothered to lock the bedroom door. I tell you this story because it is a perfect visual of just how urgent that “OMG, I’m going down!” feeling is. When it happens, there had better be a bed, sofa or other safe place to fall within 3 feet of me because I have no choice but to collapse.

Of course, fatigue is only ONE aspect of ME. I have chosen to focus on the fatigue in order to give the reader a clear picture of what we are talking about when we say “fatigue”. Using “fatigue” to describe what the ME sufferer experiences is like calling the Pacific Ocean a pond.  ”Fatigue” is the only word that comes close. There is no word in the English language that adequately describes it. I have collapsed in the grocery store, a gas station/market, a Chili’s restaurant, twice in the yard, in the floor of my bedroom — 2 feet from my bed, singing a duet on the stage at church. Once, it took me 20 minutes to muster-up the energy to get out of the bathtub after preparing snacks for a card game with neighbors. While I was busy trying to pull myself up the 2 feet to step over the side of the tub, our guests had arrived and my husband was 3 rooms away entertaining them. I could not even muster-up enough energy to call to him in a voice that could be heard. In fact, when I would collapse, the message I would try to communicate to those around me was, “Just give me a minute, I’ll be okay”. What they heard was ”Shwshwshwshwshwsh.”

On the day I collapsed in the grocery store, I felt strong – so strong that I had driven myself there. However, because the collapsing events were happening every few days, I put my most recent labwork and diagnosis in my bra before leaving home with a note to NOT call an ambulance. I knew if I had been transported to the local hospital, they would just run a dozen expensive tests and with all the test results all coming back ”normal” would ultimately send me home.

I hope my descriptive rendition of this debilitating condition has helped you to visualize how it debilitates its victims on a day-to-day basis. For a real visual, the best I have found is Clip #2 found at http://www.nzonscreen.com/title/open-door-me-2008.

Thank you for reading my story, which, by the way, took me approximately 6 hours to write due to numerous delays due to loss of train of thought and lengthy pauses trying to to remember words.

Nita
Texas
Submitted 10-20-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

I was diagnosed with breast cancer on Febuary 15th, 2011. I am a diabetic, have neuropathy, and going through chemo and radiation. My heart goes out to everyone going through this horrid disease!! I will survive – it will just take a long time!

Jennifer
Kentucky
Submitted 10-19-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

My Story:

Pink Combat

I grew up proud of the Special Forces Dagger on the breadbox.

I knew where the metals were hidden in the drawer.

These markers of bravery never spoken of—beyond reference to the elusive Green Beret—

A symbol of heroes not awarded, to a pilot, without marked time, boots on the ground.

The Green Beret—referenced more often—than Purple Hearts awarded and lessons of war.

No, there was no talk of bravery or what it took to fight a war with an invisible enemy.

My hero has ribbons and scars that are rarely seen, if you don’t count his knee or inner core.

That’s where there’s a mark, for the crew he saved as the pilot, landing ‘the Bird’.

And in a back closet, in a room rarely visited;

There hangs a uniform of his best friend—another symbol of battle—to preserve.

As I grew; I resented those people, flaunting their ribbons and service awards.

They couldn’t be real heroes; because REAL heroes kept ribbons locked away in drawers.

Even in my friends’ homes, where Old Glory would triangulate;

Their hero’s pictures just after boot camp—black and white, green beige, some with flags—

All clean cut with smiles—no ribbons to brag.

No details of combat haunting their core, steeling into blackness;

PTSD; wounds; dead and dying—still unexpected—those things happen to others and in lore.

Today I wear a different kind of ribbon; one earned throughout history posthumously;

Though it was unheard of; it is dedicated to every Woman, Man, and Child.

To those who are grieving, fighting, and dying—especially those who feel like they’re going crazy—

Hormones drying up, genetic mutations coddling cancer cells;

Vertigo, light sensitivity, private parts eroding—those damning cells collide with poison—

Night terrors, chemo induced menopause—THIRST—every aspect of my human self, eroding.

No, this ribbon is not meant to be hidden in a drawer or forgotten, to erase the stains of war.

There wasn’t a caveat to how I earned it or settled a score.

This war I will always fight; just as I know deep down that my hero’s war never ended.

Agent Orange sullied my hero’s fight.

But in this war, chemical weapons and biological agents aren’t meant for destruction;

No sit in; college enrollment; or move to another country will prevent you from facing this war.

Here, combat means poison, radiation, limbs altered, and body parts defaced.

My head shaved—there was no boot camp for where I’ve been—proven by the braces on my teeth.

Very unlike war, these scars of battle—to see my heart beating where my D cup once lay;

Now my teeth are yellowed, hair turned gray; those expanders led to reconstruction;

An aching body; nightmares of work; terrorized by three with despicable corruption;

Lost love announced by the big C; newly thinned hair and resulting in financial destruction.

This battle won’t discriminate between social classes, culture, political stand or belief.

It defiles my ability to think clearly after ravaging my femininity and crash landing some dreams.

Today, Pink stands for my new normal—and it’s recognized—more than my hero’s lost dreams.

I wear this ribbon for him and the warriors who saved my life and for those the battle did end.

I wear this ribbon for those who fought and others who will eliminate this fight.

My hero volunteered for that fight, freely and without pause.

He taught me of skeletons with skin and human smoke—to teach me of war—without visiting his own.

This hero didn’t face just one year of a fight; living life after the invasion on October 19th;

A birthday he faced with his reserve unit, a sheriff, search and rescue with volunteers;

A kidnapped Son, always just out of sight; no ribbon or Beret awarded for that kind of fight.

His birthday is tomorrow, so another year passes without knowing my brother;

And I will begin a regular day; enlisting the assistance of adjunct therapy—a little more gray.

Today, this ribbon is for awareness; worn proudly by war heroes, supporters, teammates, and friends.

It’s worn by our doctors, nurses, caregivers;

It’s worn by people with an expiration date, who give of their life freely to treatment and science;

That may save another’s life to the detriment of their survival.

It’s worn by those dying and a mother who choose a baby over treatment, to hold her one time.

The ribbon is worn by Women like me;

Choosing the ability to adopt someday over their birth right to bear children;

This combat ribbon is worn for survivors with scars that we can see.

Pink is worn for science, innovation, and progress; not commerce or party.

The ribbon is made possible, by Men and Women like my hero who fight and fought for a cause.

My pink combat ribbon is worn as a symbol of my survival without pause.

My ribbon was awarded by one of my teammates, care taker and lifelong friend.

My hero’s ribbons and dagger were awarded by our country and not often spoke of again.

Though we cannot talk—due to an unmentionable party—I write this, thinking of him.

My ribbon is worn for my hero who taught me to fight.

It’s worn for my grandparents and ancestors who suffered alone, not knowing what they fought;

As science and our progress, had not been theirs, for a cutting edge their fight.

Today I wear my Pink Combat ribbon; thankful to all whom stood with me in my fight.

Thankful to all those who fought; granting freedom to doctors and scientists;

Who strategize and command my fellow fighters into battle, combating wars unseen.

Yet this ribbon I wear just doesn’t stand for Cancer.

Remember, I could be anyone with any history, much more than cancer.

I could be the sister of a missing brother, a survivor of three kinds of abuse, a child scorned by a mother;

A teenager emancipated; one expected to drop out and abuse.

Perhaps I’ve enjoyed studied success, maybe I owe my life to Sallie Mae, and maybe I earn much less.

These ribbons don’t tell the whole story, I’m much more than that cancer, it’s not about glory.

Don’t trivialize my life by focusing on Cancer—know that I’ve risked more in love and laughter.

Pink doesn’t define my life much more than camouflage described my father’s.

Know that I stand grateful for those who expand our awareness; thankful for all who have fought;

I’m proud to say these ribbons are not made for drawers or posthumous recognition.

The Pink Combat Ribbon belongs to us all; for a future without Cancer, to all of our ambition.

To all those with a rainbow of ribbons; for Leukemia, Child Abuses, Missing Persons et.,

I wear my Pink Combat Ribbon as a Survivor of Cancer, armed with my friends as family;

A Girl who learned how to fight—long before I endured this long battle;

Yes, I earned the Pink Camouflage Ribbon and I found love again.

— Thalia Jaide Dufaigh who Fights Like a Girl! (Jade NiDubhthaigh)

Thalia
Washington
Submitted 10-18-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Since I was 13 years old, I have struggled with weight and body image issues. No matter how skinny I was I still felt fat. I couldn’t look in mirrors. I began starving myself and got down to a dangerous 99 pounds.

After a talk with my parents I put weight back on but the feelings of being fat and disgusting didn’t go away. A couple of years went by in which I would starve myself during the week, binge eat on the weekends, and spend all night Sunday crying about being a failure and that I would always be “fat”.

I hit bottom again when I managed to starve myself to 114 pounds at the age of 21 (I am 5’7″ so it was definitely too skinny). I finally decided to seek help and uncovered things about my past that I had been holding onto all these years and how they have caused my weight issues. Thanks to support from my family and especially my sister I have officially kicked my eating disorder!

I just want everyone to know that you are absolutely beautiful no matter your weight and should love yourself for who you are. If you are struggling with an eating disorder please do not wait to get help. You would be surprised at how willing to help your family and friends will be. Sometimes you have to try a couple different therapists before you find the right one, but it’s worth it. Don’t ever let what others think influence you, love yourself, and just be happy. Life is too short to let an eating disorder control you.

Katie
South Carolina
Submitted 10-17-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

In Oct of 2004 I had my yearly mammogram. The following January I felt a knot in my right breast. Within six days I had a biopsy. Six days after that I was told that I had breast cancer. I immediately headed to a breast surgeon. I had the breast removed, never had any problems, never had pain.

After six weeks, I had eight precautionary chemotherapy treatments. Everything went well with this because I had LOTS and LOTS of support. Not just from my family but from a lady I met when I was diagnosed. She became my mentor and still is. I had lost my husband of 41 years to lung cancer in May of 2004. He was a fighter and had always been a very strong influence in my life, but especially when I was told I had cancer. He taught me to be a fighter and that is WHAT I AM.

You must have lots and lots of FAITH IN GOD to get through something like this, but you also HAVE TO BE A FIGHTER!  The picture I am sending was made at our ASHLEY COUNTY BREAST CANCER AWARENESS dinner last fall. I AM A SURVIVOR AND I AM A FIGHTER!!!!  THANKS BE TO GOD.

Earline
Arkansas
Submitted 10-16-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

I am a 46 year old ovarian cancer survivor. I was diagnosed in 2008 with stage 3C ovarian cancer. I was 43 at the time and I had just gotten over the flu in 2007.  I started having some pains in my side that caused me to double over and actually cry. My youngest son and my boyfriend were both here with me when this had happened. I originally thought I was gaining weight because I was getting too heavy around the mid-section and figured “ok, I will go on a diet and lose weight”. Well, it turned out that wasn’t the cause at all.

After having the pain for 2 weeks, my boyfriend suggested that maybe it was cysts – that I had previously had – coming back. I made a doctor’s appointment and went in.  He ordered an ultrasound and it showed 2 cysts – one on each ovary.  On the left one, it was a follicular (water filled) cyst and, on the right, it was a porcupine looking one that had started squeezing my ovary so much that it cut off the blood supply and caused me to keel over in pain.

By the time I made it to the ER, my son had to carry me in. They gave me morphine to help ease the pain and it didn’t do anything. Later the next morning, they admitted me and the next day the doctor did a removal of the right ovary and sent it and the cyst for a biopsy.  A few days later I got the news that it was cancer.

He then sent me to an oncologist who deals with this area and after he examined me he said that I was stage 3C. It had traveled to my pelvic region.  He scheduled me for surgery and what was supposed to be only an hour or 2 turned into 4 hours. He removed 10 – 15 lbs of tumor which went from my pubic region to my diaphragm. He moved every single organ in my body and even removed some of my omentum and did a bowel resection. If he had had to break my breast bone it would have been stage 4 but he didn’t have to go that far.

I’ve been in treatment 3 times. I’ve had 2 remissions and I just started my 3rd treatment cycle last week after being off since July. My remissions will be shorter as time goes by but I am doing what I want to do now with my life. I go out to eat with friends.  I spend my money the way I want. I take care of myself. I am truly blessed to have a great group of sisters that care about me as I care about them and we are all there for each other no matter what.

I want everyone to know that there is help out there.  If you’re not feeling good and you think it’s just a need to lose weight, get it checked out to make sure. This is the SILENT killer and if left undetected it will kill you….

Terry
Ohio
Submitted 10-20-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

Yes, I know that “When are you due?” can be extremely painful for anyone who is not pregnant… But to a 30 year old woman who can’t have any more children, and has Ascites from a failing liver, it is heartbreaking. Of all of the symptoms I had, from constant bleeds, horrible itching, memory loss, daily vomiting… All of them, the ascites was the one that played with my emotions the most. One time, I sat in front of my mirror for almost an hour staring at my pregnant looking belly imagining “if only…” But really it was something more serious, a symptom of cirrhosis… fluid collecting outside of my organs (in the Peritoneal cavity). At first you really don’t notice, but after a little while the pressure builds, the fluid begins to press on your organs, it becomes hard to breathe (and walk) and you can just feel all that fluid sloshing around in there. Ascites is a symptom of an underlying problem, so the only way to truly get rid of it is to fix the cause. In a majority of the cases, it is advanced liver disease (cirrhosis) that causes ascites, but it can also be from congestive heart failure, kidney disease, pancreatitis, and some cancers as well.

Controlling ascites is an uphill battle for anyone, but for a gal on the transplant list with ESLD (end-stage-liver-disease) it would not go away until I got my new liver. It can be managed for quite a while with a proper diet of less then 2,000mg of sodium per day (I kept mine at about 1,000). I also ate foods that were natural diuretics (and just plain good for the liver) like green tea, artichoke, asparagus, lemons, cranberry juice, apple cider vinegar, cucumbers… Once diet alone stopped working I was placed on diuretics, Lasix and Aldactone (watch your potassium and blood-pressure on these folks) but I can not stress the importance of diet still, because these drugs can do some damage, especially to your kidneys, so please don’t depend on them alone! After a while, even stronger diuretics stopped  working, and I needed to have an occasional paracentesis. This is where they take a very large needle to tap and drain the fluid (they will also take a sample to test for infection). It relieves the pressure for a while but, unfortunately, fluid usually builds back up pretty quickly.

I took care of my ascites at home, adjusting my own diuretics, and only went in when I had a fever or needed a paracentesis. I weighed myself daily and was insanely strict with my diet. I believe that it kept my ascites under control with the least amount of diuretics, and spared my kidneys from damage while I waited for my new liver.  Please see a doctor if you think you may have ascites, and for Gods sake, don’t approach a woman about her belly unless she is rocking a “Bun in the oven” shirt.

Ricki

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

I was diagnosed when I was 42 years old. I was hesitant to go to the doctor because like so many women I didn’t think it would happen to me. Boy was I wrong!

I was at stage 3 – already in the muscle and lymph nodes. Had a mastectomy on the right side, 8 chemo treatments, 31 radiation treatments and numerous operations. But with every step I kept reminding myself that I had to endure it all to live! I refused to be defined by this disease! I knew that God could and would use me and my experience to bring good to someone, somewhere!

I am a 3 year survivor and doing really well! I am very aware and appreciative of each and every day I am given. I wish I could hold the hands of women after me that face this disease and its treatment and help them through – let them know that they are NOT alone and they CAN fight and WIN!

Barbara
Arkansas
Submitted 10-16-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional health care advice.

I have suffered with psoriatic arthritis for many years but was not diagnosed until 2010. I have problems with my knees and with my hip joints and I am 45 years old. I also found out that same year that I have fibromyalgia in my shoulders.

When it is cold I have a hard time getting around and can barely walk. On my good days I can walk for maybe 1/2 mile then have to sit and rest for an hour or so. If there is anyone out there who is suffering the same and can recommend some treatment please let me know.

Patricia
Texas
Submitted 10-16-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

I was twenty nine when I was diagnosed with stage 2B breast cancer. I was in complete shock. Cancer does not run in my family and I thought I was super healthy. I ate good food, did yoga, meditated, and so forth. It didn’t matter. Cancer does not discriminate.

Since then I have had a bi-lateral mastectomy, chemo and radiation. It has been a crazy journey but I have met some awesome women along the way – most young like me!

Here is a letter I wrote to the cancer cells:

Dear Mr. Cancer Cells,

I am writing to tell you to suck an egg, go play in traffic, and eff yourself. I do not care which order you do these things as long as they are done. As you know, you and I have a love/hate relationship. You thought you could come in and invade my boob and then my body. Well, you did a great job trying, I will give you that. But I spotted you before it got too serious. You have taught me a lot so far which means I can’t completely hate you. I will tell you what you have done to make me hate you and how I turned it into love.

~You took my summer of swimming, partying, and dating foolish boys away but because of that I learned that dating foolish boys is never a good idea, partying is overrated, and I can swim anytime I want.
~You caused my boobies to be whacked off but now I have bigger boobies that won’t ever sag.
~You made me surrender to the medical field with all their drugs, surgeries, and sanitary rooms but I found a ND who helps me with nutrition, acupuncture, supplements, and she helps me find a nice balance between eastern and western medicine.
~You made it so I can’t work but instead I have had the chance to experience how generous and loving the community I live can be.
~You took my life and put it in the middle of a huge storm but I am learning to dance in the rain and love the thunder.
~You have made me lose my hair but now I get to flaunt my perfectly shaped dome.
~You have tried to make me feel insecure but instead I feel empowered and confident.
~You tried to put the fear of God into me but I know that fear is a non-reality and that God is pure love.
~You have made me scream, cry, and feel like I am going crazy but I have a huge support system with shoulders to cry on and ears that will listen.
~You tried to make my world spin until I felt sick but I figured out that slowing everything down is great idea. That I am better off to take life minute by minute. I can’t control the future and now is all I have.

So, I guess you should know that you have not destroyed my life. You have made my life better. So, I can’t completely hate you for what you have done. Instead I should say thank you for waking me up, thank you for teaching me what is important, thank you for helping me detach from the drama. Don’t get me wrong – I still want you to go eff yourself and to know that you are never welcome to invade my body again.

Sincerely,

Yet another strong woman who plans to kick your ass.

Amy
Maine
Submitted 10-16-11

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.