The past few months I have been through hell. I seen my world come crashing down when my ex instead of proposing, dumped me via text message, I've been sexually assaulted, got pregnant, been through horrific accusations and abuse on social networking for just trying to be me, I've seen the reemergence of my eating disorder, something I thought I truly had beaten, been through a semi quasi marriage and divorce, lost friends, went into treatment for my eating disorder, had a close friend just completely belittle me and make me feel lower than low, and now diagnosis of a genetic disorder, which was found by accident, and finally been told because of the said disorder I have an old persons disease osteoporosis, fractured my femur, cracked my knee cap, and now fractured my forearm, all from simple little trips and falls. Now, I have to give up my dream summer, My dreams, and now I am losing hope.
How can one person be expected to handle this? What have I done to deserve this? I have always tried to be the perfect daughter, grand-daughter, friend, student, and partner. Why am I being punished? I am slowly losing all faith in everything? I am so in love deeply in love. But, I am so afraid to admit it to loudly. Who's to say that will not be taken away from me? I don't think I can handle losing him.
Chronic illness is what I hear over and over from everyone. On the outside I look like a normal pregnant 22 yr old girl on the inside, I basically have the body of an old lady and my bones are brittle. No one gets it. I'm anemic, my liver and spleen are enlarged, and I have bone marrow involvement. Everyone looks at me as this girl that has everything. Guess what!!! I FUCKING DON'T!!! Money can't cure me! THERE IS NO CURE!!! No one realizes how much this sucks. I hear you'll be fine, you're ok, I'm so sorry. DON'T BE SORRY!!!! DON'T PITY ME!!!! I want to be able to rant and scream and yell and fight. I want someone to listen. TO tell me how much this sucks, to be angry with me. I want my friends to ask me how I am. To cry with me. To just be!!!
What I want most is to be me again. The me I was in December. I was so different then. I had such a love for life. Oh if you had known me then. Some had a brief glimpse of that me. The me before I was raped, before my pregnancy. I love my daughter don't get me wrong. I love her and will fight for her. I will give my own life for her. She is my daughter. It just is hard somedays. She will grow up and I am sure want to know about her dad. I sit and think when I give birth, her birth record will read Father: UNKNOWN. What kind of cruel joke is that. How will I tell her about her conception. My choice to love her and give her life. What kind of mum will I be? Can I be enough? Give her enough so that she will not miss that father she doesn't have? I pray to G-d to give me the strength to make be the best mum I can be.
Christ I just ramble at times don't I but I needed to get this out I needed to just vent and rant it helps me keep it together.
Lost and scared
Thursday, May 24, 2012
Thursday, May 17, 2012
Ups and Downs twists and turns
It's been awhile since I last posted. Things have been a bit crazy. I am in a clinic for my eating disorder getting well or so I thought. The other day I was taken over by excruciating pain. I got a high fever and became the only way I can describe it completely out of it. I was rushed to the main hospital. Once there the blood work the tests all began. They take caution with me because I have had cardiac issues related to my eating disorder and also because I am 20 weeks pregnant so it's not just me they have to worry about. The doctor's noticed my liver and spleen were enlarged, it sent up a red flag, because I was in a Jewish medical center , they looked at my genetic testing and my amnio study. The Doctors in PA tested me for the fatal Jewish genetic disorders which BTW I woulda already been dead if I had them, but none of the other ones. Tests were ran and the diagnosis came in. The told me I had Gaucher's Disease. Now to many of you I am sure you have never heard of Gaucher's disease. So here it is in a nutshell.
Gaucher's (go-SHAYZ) disease occurs when certain harmful fatty substances accumulate to excessive levels in your liver, spleen, lungs, bone marrow and, less commonly, brain. This accumulation of fatty material in tissues interferes with how your body works and may cause organ enlargement and bone pain.
Gaucher's disease is caused by a deficiency of the enzyme glucocerebrosidase, which helps the body process the fatty substance glucocerebroside. The disease is sometimes called glucocerebrosidase deficiency.
Gaucher's disease can occur at any age. It's most common in Jewish people of Eastern and Central European descent (Ashkenazi).
Treatment for Gaucher's disease may involve enzyme replacement and other therapies.
Gaucher's (go-SHAYZ) disease occurs when certain harmful fatty substances accumulate to excessive levels in your liver, spleen, lungs, bone marrow and, less commonly, brain. This accumulation of fatty material in tissues interferes with how your body works and may cause organ enlargement and bone pain.
Gaucher's disease is caused by a deficiency of the enzyme glucocerebrosidase, which helps the body process the fatty substance glucocerebroside. The disease is sometimes called glucocerebrosidase deficiency.
Gaucher's disease can occur at any age. It's most common in Jewish people of Eastern and Central European descent (Ashkenazi).
Treatment for Gaucher's disease may involve enzyme replacement and other therapies.
The major types of Gaucher's disease and associated symptoms are:
Type 1
This form of the disease is the most common and generally the mildest. Type 1 accounts for about 90 percent of cases. In this form of the disease, there's usually no damage to the brain. This type can occur at any age, although it's most common in adults, with an average age of 30 at the time of diagnosis. Possible signs and symptoms of type 1 Gaucher's disease include:
Skeletal abnormalities, including thinning of your bones (osteopenia), bone pain and bone fractures
Enlarged liver (hepatomegaly) or spleen (splenomegaly), or both
A decrease in healthy red blood cells (anemia)
Excessive fatigue
A greater susceptibility to bruising, which may mean you have a low number of blood platelets (thrombocytopenia)
Yellow spots in your eyes (pingueculae)
Delayed puberty
Nosebleeds
he cause of Gaucher's disease is a deficit of the enzyme glucocerebrosidase. This enzyme normally breaks down fatty substances (lipids) called glucocerebrosides. When the enzyme is scarce, however, the fatty substances can build up in your brain and other organs, and within your bone marrow.
Gaucher's disease is passed along in an inheritance pattern called autosomal recessive. Both parents must be carriers of a Gaucher's genetic mutation for their child to develop the condition. So far, researchers have noted more than 300 genetic mutations associated with Gaucher's disease. Even when both parents are carriers, there's still only a 25 percent chance that their child will develop the disease, compared with a 50 percent chance of their child being an unaffected carrier, and a 25 percent chance of his or her not being a carrier and not having the disease.
All types of Gaucher's disease tend to be progressive. Possible complications depend on the type of Gaucher's disease.
Complications of all types
Possible complications of all types of Gaucher's disease include:
Bone pain, which can become severe and may be associated with fractures.
A tendency to bleed, which may result in repeated hemorrhaging in the nostrils or nasal cavities, or bruising in the skin (ecchymosis).
An increased risk of certain cancers. Older people with Gaucher's disease may have an increased likelihood of developing certain types of cancer, particularly multiple myeloma — uncontrolled multiplication of plasma cells.
To treat type 1 or 3 Gaucher's disease, your doctor may recommend:
Enzyme replacement therapy. This approach replaces the deficient enzyme with artificial enzymes. These replacement enzymes are administered in an outpatient procedure through a vein (intravenously), typically in high doses at two-week intervals. Although results can vary, treatment is frequently effective in people with type 1 Gaucher's disease and, in some cases, type 3. In many people, enzyme replacement therapy can reduce the enlargement of the liver and spleen, help to resolve blood abnormalities and improve bone density. It's unclear whether this therapy is effective for the neurological problems of Gaucher's disease. Occasionally people experience an allergic or hypersensitivity reaction to enzyme treatment.
Bone marrow transplantation. This surgical procedure has been used for severe cases of Gaucher's disease. In this technique, blood-forming cells that have been damaged by Gaucher's are removed and replaced, which can reverse many of Gaucher's signs and symptoms. Because this is a high-risk approach, it's performed less often than is enzyme replacement therapy.
Medication. The oral medication miglustat (Zavesca) has been approved for use in people with Gaucher's disease. It appears to interfere with the production of glucocerebrosides in some people with type 1 disease. Diarrhea and weight loss are common side effects. This medication may also affect sperm production. Contraception is advised while using miglustat and for three months after stopping the drug.
Pregnancy
Although pregnancy may worsen the symptoms of Gaucher's disease, most women who have the disease can have a successful pregnancy. However, it's not clear if enzyme replacement should be continued during pregnancy.
Prognosis
People with mild cases of Gaucher's disease, particularly those who develop it in adulthood, have close to normal life expectancies. Children whose illness begins during infancy generally don't live beyond 2 years old. However, children with type 3 who live into their teens often survive for many more years.
They say when it rains it pours well I am ready for the rain to stop and the sun to start shining, I don't have very many people to count on in life and my list of friends continues to get shorter and shorter. I am not even sure who will be with me to fight this battle but I can't give up my daughter is counting on me. I am not even sure if my blog helps anyone but me, but I keep writing. It at least helps me put my thoughts down and maybe even get some kind of realization. If anyone is reading this please keep hope at this point in life it is always have to face the uncertainty of our future.
Type 1
This form of the disease is the most common and generally the mildest. Type 1 accounts for about 90 percent of cases. In this form of the disease, there's usually no damage to the brain. This type can occur at any age, although it's most common in adults, with an average age of 30 at the time of diagnosis. Possible signs and symptoms of type 1 Gaucher's disease include:
Skeletal abnormalities, including thinning of your bones (osteopenia), bone pain and bone fractures
Enlarged liver (hepatomegaly) or spleen (splenomegaly), or both
A decrease in healthy red blood cells (anemia)
Excessive fatigue
A greater susceptibility to bruising, which may mean you have a low number of blood platelets (thrombocytopenia)
Yellow spots in your eyes (pingueculae)
Delayed puberty
Nosebleeds
he cause of Gaucher's disease is a deficit of the enzyme glucocerebrosidase. This enzyme normally breaks down fatty substances (lipids) called glucocerebrosides. When the enzyme is scarce, however, the fatty substances can build up in your brain and other organs, and within your bone marrow.
Gaucher's disease is passed along in an inheritance pattern called autosomal recessive. Both parents must be carriers of a Gaucher's genetic mutation for their child to develop the condition. So far, researchers have noted more than 300 genetic mutations associated with Gaucher's disease. Even when both parents are carriers, there's still only a 25 percent chance that their child will develop the disease, compared with a 50 percent chance of their child being an unaffected carrier, and a 25 percent chance of his or her not being a carrier and not having the disease.
All types of Gaucher's disease tend to be progressive. Possible complications depend on the type of Gaucher's disease.
Complications of all types
Possible complications of all types of Gaucher's disease include:
Bone pain, which can become severe and may be associated with fractures.
A tendency to bleed, which may result in repeated hemorrhaging in the nostrils or nasal cavities, or bruising in the skin (ecchymosis).
An increased risk of certain cancers. Older people with Gaucher's disease may have an increased likelihood of developing certain types of cancer, particularly multiple myeloma — uncontrolled multiplication of plasma cells.
To treat type 1 or 3 Gaucher's disease, your doctor may recommend:
Enzyme replacement therapy. This approach replaces the deficient enzyme with artificial enzymes. These replacement enzymes are administered in an outpatient procedure through a vein (intravenously), typically in high doses at two-week intervals. Although results can vary, treatment is frequently effective in people with type 1 Gaucher's disease and, in some cases, type 3. In many people, enzyme replacement therapy can reduce the enlargement of the liver and spleen, help to resolve blood abnormalities and improve bone density. It's unclear whether this therapy is effective for the neurological problems of Gaucher's disease. Occasionally people experience an allergic or hypersensitivity reaction to enzyme treatment.
Bone marrow transplantation. This surgical procedure has been used for severe cases of Gaucher's disease. In this technique, blood-forming cells that have been damaged by Gaucher's are removed and replaced, which can reverse many of Gaucher's signs and symptoms. Because this is a high-risk approach, it's performed less often than is enzyme replacement therapy.
Medication. The oral medication miglustat (Zavesca) has been approved for use in people with Gaucher's disease. It appears to interfere with the production of glucocerebrosides in some people with type 1 disease. Diarrhea and weight loss are common side effects. This medication may also affect sperm production. Contraception is advised while using miglustat and for three months after stopping the drug.
Pregnancy
Although pregnancy may worsen the symptoms of Gaucher's disease, most women who have the disease can have a successful pregnancy. However, it's not clear if enzyme replacement should be continued during pregnancy.
Prognosis
People with mild cases of Gaucher's disease, particularly those who develop it in adulthood, have close to normal life expectancies. Children whose illness begins during infancy generally don't live beyond 2 years old. However, children with type 3 who live into their teens often survive for many more years.
They say when it rains it pours well I am ready for the rain to stop and the sun to start shining, I don't have very many people to count on in life and my list of friends continues to get shorter and shorter. I am not even sure who will be with me to fight this battle but I can't give up my daughter is counting on me. I am not even sure if my blog helps anyone but me, but I keep writing. It at least helps me put my thoughts down and maybe even get some kind of realization. If anyone is reading this please keep hope at this point in life it is always have to face the uncertainty of our future.
Friday, May 11, 2012
The rules I hate these Fuckin things but I have to live by them
1.
No 3 or 4 letter F words fat, fine, or the
infamous F**k
2.
No weights, calories, or numbers
3.
No cross-talking
4.
No staff bashing
5.
Do not talk about anyone not in the room
6.
Confidentiality is key
7.
Speak in the "I" not the "we"
8.
Nothing on your lap
9.
Stay present!!!!!!!
It's been a rough week
I have had a horrific week and I don't want to write tonight so here is my feelings some of them at least in pictures
Thursday, May 10, 2012
Not sure where to go or what to do
I'm 22 I have my whole life ahead of me. These are comments I hear over and over. "Don't let others define you". Yet, another comment thrown my way. "why do you let people get to you?" A question I hate hearing.
My life was always about appearances. From the time I was a very young child I knew that others perceptions of me is what made me in this world. Constantly reminded as a woman I needed to appear flawless, to appear beautiful, and to appear strong yet needy, Galas, fundraisers, balls, operas, plays, they all became a part of my life. " No one wants a fat wife" was something I was constantly reminded. Cinch in your waist, tuck in your tummy, walk tall. Perfection was my world. I still suffer from that. Yes people get to me. Why? I do not want to fail. I do not want to be hated. I want to be loved and accepted. I want to be kind, caring, and loving. IWANT No I NEED TO BE PERFECT! I know it is not possible but I strive for perfection in everything I do. I work hard to look perfect. Diet, exercise, drink water, facial peels, Facials, you name it and apart from plastic surgery I have done it.
My therapist recommended I write the things that have led me down this path. The things that are leading to my struggles today. Over and Over again it is one thing. An obsessive need to be accepted, to belong, to be this perfect little girl whom everyone loves. To be the perfect daughter, granddaughter, sister, friend, student, girlfriend, the perfect everything. He tells me that perfection is an unattainable goal. I question that and say How do we know because as of yet no one has achieved perfection? I know this deluded thinking is what got me to where I am today. Although unhealthy my need for perfection has had benefits. I maintained a perfect GPA through 5 years of college, I graduated 2nd in a class of over 8300 students, and I secured a coveted internship that anyone would kill for. I know it is unhealthy, I know it is not helping me to get well, but I truly suffer when people pick at me. Some do not understand the ferocity at which their words sear me. The pain it causes not only to my psyche but also to my body. I am the first to admit I am to trusting, to forgiving, to loyal, to caring, and to open. I care about people. I care how they feel. I never purposely set out to hurt anyone. I never intentionally mean to be cruel. I have been attacked for so many things, I wonder how I can possibly continue to pick myself up and go on. I am tired. I am weak. I can not take this anymore!!! I feel like when I open up trust someone they eventually take that trust and turn it on me. Use the things I confided in them and twist and warp it essentially making a mockery of me. I have sat here thinking crying wanting to not be me, wondering why I have to endure this. I want to be numb, I want to be cruel. Then a small voice comes up inside of me reminding me that if I do that I will no longer be me. I will have given into this society of droned out step ford types. I will be no better than the emo who cuts to feel. Those who will do anything for attention or love. I will have given in and become exactly what I fear becoming.
So Yes, I am 22yrs old and in a little over 20 weeks I will be a mother. I will be a single mother to a very beautiful daughter whom I chose and fought to give life to. Even when others felt I should give up I chose to continue to fight for her, for me, for us both.
I am 22yrs old and in this short span of life I have lived through things that I do not believe many others would come out the other side of. I am still here I am still fighting
I am 22yrs old I have my whole life ahead of me.
I am 22yrs old I will take things, One day, One Hour, One minute, One second at a time.
I am 22yrs old I have anorexia. A disease that has not only almost taken my life but also the life of my preborn daughter. A disease if I choose to allow it can take over my every being, make me into something I hate, and take away everything I have worked so hard to achieve.
I am 22yrs old and today I choose not to let my eating disorder or others to define me, instead I choose to define myself.
Yes, I am sensitive, yes I worry about others, yes I tend to care to much, react to things inappropriately, but, that is who I am the person I am and the reason that those who love me love me.
Just for today I will try to strengthen my mind. I will learn something useful. I will learn something that requires effort, thought and concentration. Just for today I will be unafraid, especially, I will not be unafraid to be happy, to enjoy what is beautiful, to love, and to believe that those I love, love me.
My life was always about appearances. From the time I was a very young child I knew that others perceptions of me is what made me in this world. Constantly reminded as a woman I needed to appear flawless, to appear beautiful, and to appear strong yet needy, Galas, fundraisers, balls, operas, plays, they all became a part of my life. " No one wants a fat wife" was something I was constantly reminded. Cinch in your waist, tuck in your tummy, walk tall. Perfection was my world. I still suffer from that. Yes people get to me. Why? I do not want to fail. I do not want to be hated. I want to be loved and accepted. I want to be kind, caring, and loving. I
My therapist recommended I write the things that have led me down this path. The things that are leading to my struggles today. Over and Over again it is one thing. An obsessive need to be accepted, to belong, to be this perfect little girl whom everyone loves. To be the perfect daughter, granddaughter, sister, friend, student, girlfriend, the perfect everything. He tells me that perfection is an unattainable goal. I question that and say How do we know because as of yet no one has achieved perfection? I know this deluded thinking is what got me to where I am today. Although unhealthy my need for perfection has had benefits. I maintained a perfect GPA through 5 years of college, I graduated 2nd in a class of over 8300 students, and I secured a coveted internship that anyone would kill for. I know it is unhealthy, I know it is not helping me to get well, but I truly suffer when people pick at me. Some do not understand the ferocity at which their words sear me. The pain it causes not only to my psyche but also to my body. I am the first to admit I am to trusting, to forgiving, to loyal, to caring, and to open. I care about people. I care how they feel. I never purposely set out to hurt anyone. I never intentionally mean to be cruel. I have been attacked for so many things, I wonder how I can possibly continue to pick myself up and go on. I am tired. I am weak. I can not take this anymore!!! I feel like when I open up trust someone they eventually take that trust and turn it on me. Use the things I confided in them and twist and warp it essentially making a mockery of me. I have sat here thinking crying wanting to not be me, wondering why I have to endure this. I want to be numb, I want to be cruel. Then a small voice comes up inside of me reminding me that if I do that I will no longer be me. I will have given into this society of droned out step ford types. I will be no better than the emo who cuts to feel. Those who will do anything for attention or love. I will have given in and become exactly what I fear becoming.
So Yes, I am 22yrs old and in a little over 20 weeks I will be a mother. I will be a single mother to a very beautiful daughter whom I chose and fought to give life to. Even when others felt I should give up I chose to continue to fight for her, for me, for us both.
I am 22yrs old and in this short span of life I have lived through things that I do not believe many others would come out the other side of. I am still here I am still fighting
I am 22yrs old I have my whole life ahead of me.
I am 22yrs old I will take things, One day, One Hour, One minute, One second at a time.
I am 22yrs old I have anorexia. A disease that has not only almost taken my life but also the life of my preborn daughter. A disease if I choose to allow it can take over my every being, make me into something I hate, and take away everything I have worked so hard to achieve.
I am 22yrs old and today I choose not to let my eating disorder or others to define me, instead I choose to define myself.
Yes, I am sensitive, yes I worry about others, yes I tend to care to much, react to things inappropriately, but, that is who I am the person I am and the reason that those who love me love me.
Just for today I will try to strengthen my mind. I will learn something useful. I will learn something that requires effort, thought and concentration. Just for today I will be unafraid, especially, I will not be unafraid to be happy, to enjoy what is beautiful, to love, and to believe that those I love, love me.
Here we go
I am a bit upset. I can feel the feelings of unworthiness seeping into my soul again. I lie here staring at the ceiling. I don't know who I can trust anymore. I am questioning my worth as a person. I have done so much to get where I am at. I am proud of my accomplishments. Yet, it seems that the moment I let someone in the moment I allow someone to see a bit of the real me, BAM, they have to make me an object of ridicule. Make me feel like I am a joke. It hurts so much more for me when I see that someone I care about even more laughs and encourages the behavior. I really don't know anymore. Maybe I am meant to not have friends or be happy. I have to learn how to be strong. I know I am in the alone. I need to be in it to win it! Thank Goodness for my therapist. Taking time on his day off to support me and be there for me. I know he gets paid well to do it but sometimes he goes above and beyond for me. I am not mental or crazy or nuts I have an eating disorder. I am not in an institution I will be getting treated in a clinic that specializes in eating disorders to get help for me and my daughter. There are 3 people right now I worry about me, my daughter and the wonderful man I have chosen to be in my life! I don't think I have the energy for this anymore.
Tuesday, May 8, 2012
Wondering why
<p>Today was a decent day. I reconnected with someone I really thought was out of my life forever. I ate gained weight. All in all good things. I now have a sinus infection lovely. Exhausted on antibiotics and feel like poop. Hopefully I will feel better tomorrow.
Tuesday, May 1, 2012
One day One Step and one moment at a time
Just for today, I will be the best "me" I can be. There is no competition because there is only 1 "me." Just for today, I am abstinent and free from the addiction of anorexia/bulimia. Just for today, I am open to the miracles that surround me. Just for today, I will graciously accept the love and encouragement of my friends and family. Just for today, I will take care of my inner child as she has always deserved. Just for today because it is one day, one moment at a time.
This is something I am striving to do everyday. Yesterday, Today, and Tomorrow. I will not allow my eating disorder to overcome me, to destroy me. I think about it all the time, which I know is a bad thing but at the same time it helps, it keeps me grounded, it reminds where I was and where I am going. I think about because, I cannot just skip breakfast, or lunch. I cannot just drink water all day. smoke cigarettes. I remind myself it is OK to eat that extra piece of food. I have to remember not to obsess over the scale, IT's JUST A NUMBER. These are the things I deal with everyday. Don't go to the bathroom after you eat. Diet Pills are bad. Diuretics are not good for you. That is not fat on your thighs you are becoming stronger and healthier. Don't exercise to much. I just at times have to remind myself that like an alcoholic or drug addict I too have a disease of the mind that threatens to consume me and take away my life if I do not remind myself of the simplest things. Today was a good day I ate I didn't obsess over calories, I didn't weigh myself. I looked at myself in the mirror without disgust. I saw my expanding belly as what it was the gift of life growing inside of me. Today was good. I do not know what tomorrow holds but I do know this I can face it I can win. Anorexia is a part of me but I will not let it take over me. I will be sharing some videos on my page here and again ones that show the truth behind this disease maybe it can help you or someone you love. If viewing from my page please remember to pause my music player it is in the circle at the bottom or view it on youtube. Have a blessed day everyone.
This is something I am striving to do everyday. Yesterday, Today, and Tomorrow. I will not allow my eating disorder to overcome me, to destroy me. I think about it all the time, which I know is a bad thing but at the same time it helps, it keeps me grounded, it reminds where I was and where I am going. I think about because, I cannot just skip breakfast, or lunch. I cannot just drink water all day. smoke cigarettes. I remind myself it is OK to eat that extra piece of food. I have to remember not to obsess over the scale, IT's JUST A NUMBER. These are the things I deal with everyday. Don't go to the bathroom after you eat. Diet Pills are bad. Diuretics are not good for you. That is not fat on your thighs you are becoming stronger and healthier. Don't exercise to much. I just at times have to remind myself that like an alcoholic or drug addict I too have a disease of the mind that threatens to consume me and take away my life if I do not remind myself of the simplest things. Today was a good day I ate I didn't obsess over calories, I didn't weigh myself. I looked at myself in the mirror without disgust. I saw my expanding belly as what it was the gift of life growing inside of me. Today was good. I do not know what tomorrow holds but I do know this I can face it I can win. Anorexia is a part of me but I will not let it take over me. I will be sharing some videos on my page here and again ones that show the truth behind this disease maybe it can help you or someone you love. If viewing from my page please remember to pause my music player it is in the circle at the bottom or view it on youtube. Have a blessed day everyone.
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