what disease do I have?

This link is a informational post for those wondering what the disease I have been diagnosed with. I will link back to this post when speaking about the disease.

I have Langerhans cell histiocytosis Or also known as Histiocytosis X . Ah that is much easier to remember and say  right? No……. but hey we can act like it is!

what is Langerhans cell histiocytosis?

Histiocytosis is a general name for a group of syndromes that involve an abnormal increase in the number of immune cells called histiocytes.


There are three major classes of histiocytoses:

Langerhans cell histiocytosis, which is also called histiocytosis X ( the one I have , don’t it sound fancy?)

Malignant histiocytosis syndrome (now known as T-cell lymphoma)

Non-Langerhans cell histiocytosis (also known as hemophagocytic syndrome)

Histiocytosis X has typically been thought of as a cancer-like condition. More recently researchers have begun to suspect that it is actually an autoimmune phenomenon, in which immune cells mistakenly attack the body, rather than fight infections. Extra immune cells may form tumors, which can affect various parts of the body including the bones, skull, and other areas.


Some forms of the disorder are genetic.

Histiocytosis X is thought to affect roughly 1 in 200,000 people each year. It is most often seen in children ages 1 to 15. The rate peaks among children ages 5 to10.
( we always knew I was a rare Gem!)

Pulmonary histiocytosis X is a specific type of this disorder that involves swelling of the small airways (bronchioles) and small blood vessels in the lungs. It is most common in adults. The inflammation leads to lung stiffening and damage. The cause is unknown. It most often affects those ages 30 to 40.
Histiocytosis X often affects the whole body. A disease that affects the whole body is called a systemic disorder.


Symptoms can vary between children and adults, although there can be some overlap. Tumors in weight-bearing bones, such as the legs or spine, may cause the bones to fracture without apparent reason.

Symptoms in adults may include: (* by those that I have)


Bone pain *
Chest pain *

Cough *
Fever
General discomfort, uneasiness, or ill feeling (malaise) *
Increased amount of urine

Rash * (face)

Shortness of breath * ( now on Oxygen)

Thirst and increased drinking of fluids

Weight loss

I also have Vomiting ,Abdominal pain and Irritability which is seen in children with LCH and can be seen in adults.


Signs and tests ( * by the ones I’ve been given)

Complete blood count (CBC) *
X-rays of all the bones in the body (skeletal survey) to find out how many bones are affected * ( something was seen on my shoulders)

Bronchoscopy with biopsy * ( This is how they found out I had LCH)
Chest x-ray *

Pulmonary function tests *

I have also had a bone scan, MRI , cat scan and a tube put to my heart for photos.

Histiocytosis X is sometimes associated with cancer.

There is debate if LCH is cancer or just cancer like. 

Support Groups


Histiocytosis Association of America — www.histio.org

Expectations (prognosis)


Histiocytosis X affects many organs and can lead to death.
About half of those with pulmonary histiocytosis see improvement, while others eventually have permanent loss of lung function.


Is God mad at me? I think God hates me.

I woke up about 30 minutes ago and couldn’t get back to sleep so I thought I’d type my feelings out. I’m not really sure why except I felt the need to talk but didn’t want to bother any of my friends or wake them up and to be honest I feel as if God is not hearing my prayers or listening to me. I actually feel like God is mad at me, like he hates me and I’ve did something horrible to upset my God.

I feel horrible even typing that out but it is honestly how I feel and how I have felt for the last month.I have been down on my knees more then I can count praying to not hurt, praying to understand why I have this awful disease.

Is God trying to teach me a lesson and I am missing it? What is the lesson?
Am I not being patient enough with my children? Paying enough attention to my husband? Do I not love my self enough? Am I being punished for mistakes I’ve made in my life? I admit it I’m not perfect, and I did steal food when I was a teenager. I had ran away from a abusive foster home and I was homeless and hungry so I stole food from a gas station. I did go back when I was older and I admitted my wrong doing. I have prayed and asked for forgiveness for stealing the food more times then I can count. Am I now being punished? Is that why eating causes me so much pain now?


I don’t like to feel angry or upset at my God, it makes me feel dirty and ashamed. I admit I am not a perfect mom, yes there has been times I have raised my voice at my children. I don’t go around yelling at my children but yes after being told no or my children throwing fits or yelling at me I’ve raised my voice. Does this make me a horrible person and mom? I have made my fair share of mistakes in our 15 year marriage as my husband has but we have both forgiven ourselves for them. Has my husband forgiven me and I forgiven my husband but God not forgiven me?

I try to be a good person. I give to charity, I advocate against child abuse and abuse of any kind, I give my time and money to those in need. Am I not giving enough ?

WHAT DOES GOD WANT FROM ME?

God says to honor thy Mother and Father. Is God mad at me because I refuse to speak to my biological Mother and Step Dad that raised me? I can remember my step dads mom calling me a couple years ago she told me how God wants me to speak to my biological mom and “dad”.I didn’t tell her of the abuse and how all them years I was not off staying the night with friends when they came to visit but that I was in state foster care after many years of being sexually abused by her son and my biological mom refusing to protect me. I just lied. I told her I had somethings going on in my own life and would call them when I could.I loved her and I still do and it hurts me to know I will never get to speak to her or my grandpa again.


I can never admit the truth to my grandma or grandpa as it would do nothing but harm them, my biological mom and step dad live with them and nothing good would come of it except me getting to speak to them. I do often wonder do then really think every Christmas , birthday and visit I was really off staying the night with a friend? For years? Or do they know something went on but it is to painful to admit? I guess I will never know.


I have caused a lot of issues in my biological family by refusing to speak to the very child abusers that harmed me. I have been told I like to cause drama, I have been told if I was really sexually abuse I would of never sat on my step dads lap, I was told I would not of went and visited them as a adult etc. I wonder if they don’t understand that I wanted a family so bad that I would of did almost anything , yes even visit the very people that harmed me so badly.

It hurts deeply that I have disappointed my family by cutting out my biological mom . I don’t think I upset anyone by cutting out my step dad but because my grandma their mom was such a wonderful , loving, caring and giving mom and grandma I don’t think they can understand what it is like to HAVE to cut out a mom from some one’s life. My grandma my biological moms , mom was hands down one of the best people I knew or had the honor of meeting and loving. I simply don’t understand how someone so great could have a child that is so horrible . Over the years I had made excuses for my biological mom, my step dad emotionally controlled Her, she was weak emotionally , she was scared to be alone , she had no self esteem etc. You name it and I had said it. I think that is one reason I went back for years to visit her, I wanted to do for her what she she could and did not do for me, love me enough to protect me.

I love my Aunts deeply so to hurt them hurts me. I don’t expect them to understand how I feel as they was was blessed to have wonderful parents and I know my biological mom is their sister and they do love her and I can’t and won’t fault them for that. I do know they do love me also. I can only hope one day they understand why I have cut her out and not be upset with me. I love them so much the last thing I want to do is upset them.


When I adopted my biological sisters four children I learned that my biological mom was given a choice of keeping my sister and I , but in order to keep us she would have to kick her husband out and the state was going to build a case against him, or she could gives up for adoption and we would be raised in foster care . She choose to stay married to the very man that hurt her daughters. I just don’t understand it and I never will. It’s not like she did not know of the child abuse she did, she had been told many times by me and my biological sister starting at a very young age, the abuse went on until I was a tween and my biological sister was a teen.


It is my belief that my biological sister made the same choice in her adult life to neglect and abuse her children because of the abuse that was done to her.I think she turned to drugs and she allowed unhealthy men in her life as a way to cover the pain that she Still felt from the childhood abuse. I remember growing up and looking up to my biological sister! She was so smart and could play basketball so good! I had a learning disability and used to pray I could one day be as smart as she was. She was the thin tall one with bright blue eyes and Blonde hair and she in my eyes was beautiful. Today I am so blessed and glad I didn’t turn out like she did and I wish she would of turned out more like I did.

 I’m not perfect not even close but I am a good person and I don’t drink or do drugs. I try to surround my self with good honest , giving, caring and loving people. I won the lottery in the husband department! I have some of the best friends a person could ever ask for and the best children God ever handed down.

I’m so blessed with so much love in my life but yet I feel so alone. God forgive me for what I am about to say but if God had to choose a person to give langerhans cell histiocytosis to why did he choose me? Why not a child abuser or someone that spends their life hurting others in unspeakable ways. Why do I get to feel the pain and fight for my life? Why do I have a rare disease that has no cure while child abusers are walking around harming others? Don’t get me wrong I do have full faith I will get remission but this is a painful road on the way . Have I not hurt enough in my life? Would it not be easier to just give abusers a life of pain and cancer and diseases? If they was not cured then they could no longer harm others.there I said it. Why not it’s what I think. I’m not saying I wish harm on others what I am saying is if someone had to have it why not the very people that harm others??


Funny enough I’m sure if they did get a horrible disease they would find a way to get the world to give them free medical care while my family is struggling to pay my Dr. visits and medication cost,

They say God does not give you more then you can handle. I am not sure who came up with this but I am pretty sure it was someone that said that just to give someone hope. Because let me tell you my handle this bar is bent over and breaking very fast.

Was it not enough when I was sexually abused ? How about when I was raped? How about when a drunk driver hit me and my husband? How about when my son was given a life of handicaps? Maybe It was when I was made type 1 diabetic? If not then how about all the other health struggles I have had? When is ENOUGH enough? If this is not enough then what the hell is? I am fed up with hearing God does not give you more then you can handle. I am ANGRY and I can’t handle no more. I have prayed , I have cried, I have begged and I have promised God everything under the sun. He is not hearing me so maybe he reads blogs. If you do read the Internet God here I am here is my soul and all I’ve got. I am begging you to please let up.

OK so yes maybe I am feeling a little sorry for myself right now. Don’t judge me I am allowed no matter what anyone thinks. God if you are reading please I am begging make this stop , my husband does not deserve this. I see the worry in his eyes. I see how tired he is . I see the hurt. If you need or want to punish me for stealing when I was a teen or something I did in a past life then fine but please please I am begging you do it when I come to heavens doors so my husband can get a break. He is A good man he loves you and trust you. I don’t want my children to see me hurt please if not for me or my husband the please send me in remission for my children, they need me and their dad and I need them.


If you have made it this far please don’t judge me allow me to have my own feelings and my own vent. I don’t think were have a problem though seeing people just read my give away blogs and mostly ignore the rest.


Well it is 5:34 and I’ve only fallen asleep twice while typing this so I better wrap it up. Don’t take life for granted as you never know when it can and will change in a split second.


P.s. God although I am angry I do love and trust in you. I just wish you would show me the reason for all of this. Ps ps. Can we remove this oxygen tank with a much needed new mattress set?




Location:My bedroom



Nutrisystem when away from home

First let me say I am sorry about my late reviews. I have spoken to the wonderful people at Nutrisystem and they have been very understanding.  For those of you that have not heard I became very ill at the start of June . For more about my illness please  click this link here.

Start weight 216
last weeks weight 198
Current weight 195

In this review I wanted to talk about how Nutrisystem makes it so super easy to stay on your diet even when your away from home! You can enjoy your diet and enjoy eating good food even if you are on vacation or in the hospital as I was.

If you have a IPhone, Android phone or a blackberry you can download a meal planner and other great helpful apps from Itunes or the Market for your phone. I use this on my iPad and it is wonderful! It helps me keep track of not only what I have ate, how much water I have drank and what I can and can not eat for the day. Search Nutrisystem in your market or Itunes for the application.

One of the great things that come with your first Nutrisystem order is a Meal planner . It is small and fits in any purse or backpack or even a diaper bag! In the meal planner it has a daily tracker of what you have ate for all meals and snacks and your total water intake.

When most people think of diets such as Nutrisystem they think they can only follow the diet if they are at home. This is not true with Nutrisystem not only can you take you planner with you which will help you make smart and healthy meal choices if you are eating out , You can also take your meals with you. Because most meals are small and compact you can carry these in your carry on bag if you are flying. All you need is a microwave for most meals. I found this useful when we traveled to Playa Del Carmen and stayed in a Condo. I knew we would be making most of our meals so I was able to carry my breakfast and lunch bars with me and eat a sensible dinner out. 

This was the first vacation I lost weight and did not gain weight on. I did not give up eating good meals out I just made sure I was making the correct choices for what I ate.

Inside the meal planner there is a dinning out Guide that helps you make better choices when ordering off a menu for instance if I was eating Mexican food I could order
Black beans instead of refried beans. It is better to have a corn tortilla then to have a flour tortilla.

Another example would be if I was eating Italian food .  It is alright to eat pasta with tomato base sauces , but you should stay away from creamy sauces. See you are able to enjoy dinner , get full and not feel left out while your family is ordering off the rest of the menu. I think this comes in handy not only for your diet but also for your self esteem and healthy living in general. In the long run your not only on a diet your learning and teaching not only yourself but your family a better way of eating and living.

Do you Want to lose weight and get healthy on Nutrisystem D program with me? Join today by calling 1-888-853-4689 or by visiting Nutrisystem by clicking here .

By the way have you heard of the fantastic sale Nutrisystem is having? For the first time ever you can start the system for half off! 

Disclaimer:

I am not a doctor, nor should I be confused as one.
consult your physician before starting any exercise or diet routine I did receive product and service from Nutrisyem for my review however you will always get a honest review from me


New link for Kindle give away

Hi I have been informed my readers are receiving ‘Reached maximum number of comments. No more comments can be posted.’  on the kindle give away link so I am adding this new link for the contest entries! Good luck!


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