I am having an epiphany @ the moment. It revolves around me being a bit of a strega (English translation: witch). I am not embarrassed to say I believe in people having a sixth sense. Why not? I I know there is so much of this world that we neither know or understand. Its just too small minded not to think that anything is possible. So here is my ah ha moment:
When I was 17, I was at a feast on Cresent Ave., in the Aurther Ave. section in the Bronx. I said I am a believer, so when I saw a palm reader, I thought, why not? My family are big believers in the malocchio, the evil eye, so on & so forth. My great aunt would lift the malocchio off of people in my parents kitchen.
I go for my $5.00 palm reading, thinking its going to be all bullshit, (Romanian Gypsy). I am @ the feast with my boyfriend (now husband) and another couple. I sit in her chair & the first words out of her mouth were, "so, your pregnant." Not as a question. As a matter of fact. I looked @ her & said, no (& in my head wanted to tell her off for making me feel fat). She says "if you aren't right now, you will be soon. And in your future someone with the initial A will save ..." . I am 32, and truth be told, a bit off a burn out, so what the initial A will save is a bit foggy. All i know is I walked away pissed, but also a bit freaked. I was positive this wasn't her normal $5.00 crap hand reading.
That's was in August. I left for college at the end of the month. My boyfriend & I stayed together, & I would come home on the weekends and stay @ his house. My parents thought I was staying in the dorm on the weekends. No, I wasn't an angel. I came home for winter recess and was worn out. I couldn't stay awake, & I felt like I had the flu. I am sleeping with Anthony when the pain started. It woke me up out of my sleep. I went into the bathroom & found what could only described as the heaviest period I have ever had in my life. I couldn't even tell you if I was supposed to have it, I wasn't very good at tracking it. I cleaned up & went back to bed. The cramps were so bad, I couldn't take it. I woke Anthony up & told him I had to go home, cause I think I needed a doctor. He brought me home, & after explaining why I was walking into my house @ 6am with Anthony when I was supposed to be at school, I showered & left for an Urgent Care Center cause I was positive that on top of my period I must have had a ragging UTI (I got them, alot).
No UTI. But my pregnancy test was positive. I don't care. I am 32 & married to the same man who did this with me, so I have no shame. The thing is, the doctor didn't follow that with, "and your in the middle of having a miscarriage".
Why does this matter? Fast forward 12 years. I have a 3 year old. His pregnancy was horrible. I wont even get into it. We decided its time to try again. Fertile Mertile I am, I am instantly pregnant again. Nervous. I go to my first doctors appointment, @ what is supposed to be my 9 wk check up. No heart beat. Devastation. I am 29, and have now had 2 miscarriages & one very high risk pregnancy. I have a DNC and am told to wait 3 months before I start trying. 6 weeks later, I am pregnant, again.
Another high risk pregnancy. I am induced because the baby stopped moving & my fluid drops to dangerously low. My whole pregnancy, I never call the baby by name. I didn't want to say his name until his first breath. It was my way of trying to detach myself, just in case. We had his name picked out. Anthony James (my name is unisex, so why not) & we would call him AJ. The night I couldn't feel him, I begged him to move, calling out his name to my belly.
He was born premmie, just like his brother. I refused a C-Section (he started moving on the way to the hospital). As I was in labor, Anthony has the idea to bank the cord blood, just in case. Most people pick a bank months before. He is pricing them & asking my opinion in between contractions (we chose Viacord). AJ is born struggling. His lungs are worse than his brothers are, and his jaundice isn't going away fast enough. When I ask why, I am told its because we don't have the same blood type. AJ is like his father. He is O & the universal type.
My son is 3. I am sick with either a genetic food allergy, or possibly something else so rare, that my doctor doesn't even want to begin to talk about it (no matter how likely it may look). In the middle of the night, I had a feeling, like someone whispering in my ear, to remember. To remember back to a moment when I was 17 & had a strange conversation with a Gypsy. It was all meant to happen. The miscarriage @ 17 (the universe was showing me to pay attention). The initial A will save. AJ will save me with his cord blood.
This might come off as rambling, but I needed to have this documented on the day that I saw it. Just in case in happens. I need to be able to say for sure when I felt it.
Saturday, February 26, 2011
The Skinny on being Skinny
Last night as I laid in bed with my husband (while he watched the Jersey Shore), I caught a glimpse of myself in the mirror. If you have been following my blog, you already know I am sick. My weight was the first big sign. At 4 ft 10 inches, I have always been curvy. Typical hour glass figure. Big boobs, small waste, wide @ the hips (cause I am white, no ass). The heaviest I have ever been was 135 lbs 8 months pregnant with my first son. Seven years later ( & one more baby boy), I am currently (fingers crossed) 89lbs. I am not saying this to brag. In fact, its the complete opposite.
I saw my reflection & started to cry. I have those little round balls on the tops of my shoulders. The ones you see on girls who are starving themselves. I looked @ my husband in horror. I screamed, women kill themselves to look like this?? Why?? Never in my life have I been scared to wear a bathing suit. Not even 7 months pregnant (I sported a bikini). Now, I am.
There are women who are modest. I am not one of those women. The first 5 yrs of my marriage, we called our house, the naked house. We never wore clothes. In fact, I still don't. This needs to be fixed cause my boys really shouldn't be seeing me walk fro the bathroom to the bedroom bare ass, but bad habits are hard to break. In October, after getting my most recent tattoo, I was very drunk. (SECRET: Getting wasted makes tattooing hurt alot less). I was gonna be sick. When I puke, I strip. We recently moved to the sub burbs. There are woods all around us. It was the night. I spent two hrs. sitting outside, staring @ the stars, buck naked. It was WONDERFUL.
Now, I look @ myself in disgust. My husband told me I was still hot, & stop. For my height, I have very long limbs. My legs are longer than his (he is 5ft 10 inces) & my arm reach is the same as him. He says the only thing that he sees is now my arms look freakishly long. My soul mate doesn't always know how to comfort.
The point I am trying to make is I cant believe anyone would want to look like this. I loved my curves. I beg the women of this country to realize that we aren't supposed to look like boys. My D cups are just B's. My hip bones stick out so much, the other day I came home & my 3 yr old hugged me; his head reaches my waist. He banged his head against my hip bone & started to cry.
I have always been slim, but I was also toned. I no longer have much muscles. The closest thing I can use as an example, is Natalie Portman, in the Black Swan. My husband touches me like I am a glass doll. (FYI: NOT my style).
I am on a mission to gain 20lbs. I am on the celiac diet. Its basically like living on the atkins diet. Ever seen anyone gain weight on that diet. Me neither.
If this inspires anyone to stop starving themselves, or to maybe decide to digest their food, instead of puking it up, it would make me happy. If you are healthy, stop trying to make yourself look sick. That's the only reason why my body looks the way it does. Cause I am sick. Do yourselves a favor. Learn to love the body you have. I did.
I saw my reflection & started to cry. I have those little round balls on the tops of my shoulders. The ones you see on girls who are starving themselves. I looked @ my husband in horror. I screamed, women kill themselves to look like this?? Why?? Never in my life have I been scared to wear a bathing suit. Not even 7 months pregnant (I sported a bikini). Now, I am.
There are women who are modest. I am not one of those women. The first 5 yrs of my marriage, we called our house, the naked house. We never wore clothes. In fact, I still don't. This needs to be fixed cause my boys really shouldn't be seeing me walk fro the bathroom to the bedroom bare ass, but bad habits are hard to break. In October, after getting my most recent tattoo, I was very drunk. (SECRET: Getting wasted makes tattooing hurt alot less). I was gonna be sick. When I puke, I strip. We recently moved to the sub burbs. There are woods all around us. It was the night. I spent two hrs. sitting outside, staring @ the stars, buck naked. It was WONDERFUL.
Now, I look @ myself in disgust. My husband told me I was still hot, & stop. For my height, I have very long limbs. My legs are longer than his (he is 5ft 10 inces) & my arm reach is the same as him. He says the only thing that he sees is now my arms look freakishly long. My soul mate doesn't always know how to comfort.
The point I am trying to make is I cant believe anyone would want to look like this. I loved my curves. I beg the women of this country to realize that we aren't supposed to look like boys. My D cups are just B's. My hip bones stick out so much, the other day I came home & my 3 yr old hugged me; his head reaches my waist. He banged his head against my hip bone & started to cry.
I have always been slim, but I was also toned. I no longer have much muscles. The closest thing I can use as an example, is Natalie Portman, in the Black Swan. My husband touches me like I am a glass doll. (FYI: NOT my style).
I am on a mission to gain 20lbs. I am on the celiac diet. Its basically like living on the atkins diet. Ever seen anyone gain weight on that diet. Me neither.
If this inspires anyone to stop starving themselves, or to maybe decide to digest their food, instead of puking it up, it would make me happy. If you are healthy, stop trying to make yourself look sick. That's the only reason why my body looks the way it does. Cause I am sick. Do yourselves a favor. Learn to love the body you have. I did.
Friday, February 25, 2011
Me & People of 3rd World Countries
Yesterday, I went to see the wizard. I call her that, because right now I feel like she is "all knowing & powerful". My hope is that there isn't a curtain that will eventually be pulled back. The wizard is getting closer to an answer. I have osteomalacia (also know as Rickets in children). She explained it as this: its the state @ which you have such severe malabsorption, that your bones just start breaking. She said its most commonly found in 3rd world countries, and on the continent of Africa.
I am from the Bronx people. And even though it might not be the most prosperous place in the tri-state area, its NOT Ethiopia! The question now, is what is causing it. Also, my rickets (just sounds cuter), isn't even presenting itself in the "normal" way. My blood work is very, very off. Which leads to the next issue. I am now off all of the medications that I was on, from the gastroenterologist who diagnosed me with a different auto immune disease. Turns out, the wizard read his pathology reports from the tests he did, and they were actually inconclusive. She asked me "why would he put you on the types of drugs (which have some wicked side effects), if he wasn't even sure what you have? The answer in my head? Cause lady, that's how I roll.
On Sunday. my family & I are leaving for the Bahamas. I am happy to be able to go without having to explain to security why I have a gallon size zip lock bag of medications in my carry on. The treatment for Rickets is high doses of Vitamin D, Vitamin B12, & Calcium. My body @ the moment, doesn't have any of all three. I find the Vitamin D deficiency the funniest. Besides the people on The Jersey Shore, there really aren't that many people who enjoy being tan as much as me, (except maybe my son, Domenic). My first tattoo (@ 15) was of the sun! I can sit in the sun for hours & not move. Anyone who knows me, thinks that's strange, because under other circumstances, I cant sit still for longer than 5 minutes. Yes, I also go tanning. I have to be honest, I was Snookie, before Snookie was Snookie.
The wizard thinks that there are two possibilities that are causing the Rickets. #1: Celiac Disease. Treatment is a very strict diet, that would kill most Italians. For the sake of my life, I can live w/o pasta or pizza. #2: Hypophosphatasia. Now this is not good. Neither are "good", but this one, well its rare. How rare you ask? There are only 325 documented cases, in the world. Yes people, I just wrote, WORLD. The reason for this is very simple. If you have this in utero, you are not born. If I have this, I am what a miscarriage that survived looks like. Don't get offended. I have had 2 miscarriages. I can say it.
The weirdo disease, there is no treatment or cure. The doctors spend the rest of your life treating the symptoms (such as rickets). As we sat listening to the wizard, I was watching my husbands face. When he turned grey, I asked the wizard that "if" I have HPP (that's the shorter name), could that be the reason I am so tiny? I had to lighten the mood a bit. Anyone who knows me, knows I love being 4' 10 inches. I just wanted to see my husband snap out of it. Like I wrote in my last blog, as long as this isn't cancer, I can deal.
I am from the Bronx people. And even though it might not be the most prosperous place in the tri-state area, its NOT Ethiopia! The question now, is what is causing it. Also, my rickets (just sounds cuter), isn't even presenting itself in the "normal" way. My blood work is very, very off. Which leads to the next issue. I am now off all of the medications that I was on, from the gastroenterologist who diagnosed me with a different auto immune disease. Turns out, the wizard read his pathology reports from the tests he did, and they were actually inconclusive. She asked me "why would he put you on the types of drugs (which have some wicked side effects), if he wasn't even sure what you have? The answer in my head? Cause lady, that's how I roll.
On Sunday. my family & I are leaving for the Bahamas. I am happy to be able to go without having to explain to security why I have a gallon size zip lock bag of medications in my carry on. The treatment for Rickets is high doses of Vitamin D, Vitamin B12, & Calcium. My body @ the moment, doesn't have any of all three. I find the Vitamin D deficiency the funniest. Besides the people on The Jersey Shore, there really aren't that many people who enjoy being tan as much as me, (except maybe my son, Domenic). My first tattoo (@ 15) was of the sun! I can sit in the sun for hours & not move. Anyone who knows me, thinks that's strange, because under other circumstances, I cant sit still for longer than 5 minutes. Yes, I also go tanning. I have to be honest, I was Snookie, before Snookie was Snookie.
The wizard thinks that there are two possibilities that are causing the Rickets. #1: Celiac Disease. Treatment is a very strict diet, that would kill most Italians. For the sake of my life, I can live w/o pasta or pizza. #2: Hypophosphatasia. Now this is not good. Neither are "good", but this one, well its rare. How rare you ask? There are only 325 documented cases, in the world. Yes people, I just wrote, WORLD. The reason for this is very simple. If you have this in utero, you are not born. If I have this, I am what a miscarriage that survived looks like. Don't get offended. I have had 2 miscarriages. I can say it.
The weirdo disease, there is no treatment or cure. The doctors spend the rest of your life treating the symptoms (such as rickets). As we sat listening to the wizard, I was watching my husbands face. When he turned grey, I asked the wizard that "if" I have HPP (that's the shorter name), could that be the reason I am so tiny? I had to lighten the mood a bit. Anyone who knows me, knows I love being 4' 10 inches. I just wanted to see my husband snap out of it. Like I wrote in my last blog, as long as this isn't cancer, I can deal.
Wednesday, February 23, 2011
Tales From the Crypt
I "blog" in hopes that maybe someone will hear this story & say I sound like them. Or, they can either relate or contribute something interesting. My first official blog will have to do with my current saga that is my health. My current medical state could be on that show House, or maybe medical mysteries. Part of me feels like it has more to do with medical incompetence, than my case really being so unique, but that's cause I am hopeful that what ever my illness is, its not really that rare. Special, when it comes to illness, isn't a good thing. I am currently going to a new doc., who seems stunned @ the treatment I have received so far. I can track this as far back as the birth of my oldest son (he will be 7 Apr 1st). But the situation turned really bad this past Nov. In the past four months, my new doc is the 4th., to try & diagnose me. The others have basically written me off. My primary said to me that he has helped me as much as he can, but he just cant seem to figure it out. He suggested moving on. Said go see another specialist. Didn't even give me a name. I asked him if I should go into the city, (NYC has the BEST doctors in the world). Wanna know what a westchester doctor said? "If you need to go for weekly appointments, isn't that a pain in the ass?" Seriously! I am as sick as you can get before they admit you, & the man is worried about how many miles it will take me to get there. I just moved to the sub burbs. I used to see the Empire State Building from my window. Later that day, I found a specialist. Her office is next to the Time Warner Buildings (that my husband helped build).
She seems great, & is working her butt off to help me. There is always a catch. NO INSURANCE. I have great insurance. As long as I am willing to go to doctors who know only how to treat a cold. My new doc, the day before my app., her office called & reminded me of my app time & to bring a check. NICE! Food for my kids, or another doc trying to figure out what is wrong w/ me. Its really not that bad, but as someone who has very good insurance, just the idea of paying out of pocket burned me. The fact is, if your a doc & someone is coming to see you, and they are desperate, and the doc is THAT good, you would ask for cash only too. It just reminded me how screwed up our health care system really is.
Her office called today. They have been calling any doctor that ran any blood work on me in recent years. They told me I really should find a new primary. Wow. Its nice to know that the man who has been in charge of my health for the past 11 yrs is so bad that another doctor is telling me to run as fast as I can. I have hope. This time last week, I was trying to figure out how to teach my husband to take care of our kids (my solution... nanny), if I wasn't here to do it myself. People die all the time without knowing what made them sick. I never thought it would be the way I would go, but last week, I wasn't so sure. I am supposed to go see her either tomorrow or Friday. She is compiling all of the information she has gotten from the other doctors, plus all of her tests. She assured both my husband & myself its not cancer. I thought it was. Not that there arent things just as bad as cancer. But I have seen cancer, its treatments, and how it eventually kills you. I watched it, twice. Once with an elderly person, & once with someone who wasn't sick a day in their life. Till that person was diagnosed with stage 4 cancer. Mentally, I just cant handle it. The biggest reason: If I am ever diagnosed with cancer & its stage 3 or above, I will refuse treatment. Chemo & radiation for a few more yrs (or months). No thank you. I am all about quality of life, not quantity.My issue, its also kinda like quiting before the race. Its hard to look your children in the face if your not willing to fight for them. I am grateful it looks like I wont have to worry about that.
She seems great, & is working her butt off to help me. There is always a catch. NO INSURANCE. I have great insurance. As long as I am willing to go to doctors who know only how to treat a cold. My new doc, the day before my app., her office called & reminded me of my app time & to bring a check. NICE! Food for my kids, or another doc trying to figure out what is wrong w/ me. Its really not that bad, but as someone who has very good insurance, just the idea of paying out of pocket burned me. The fact is, if your a doc & someone is coming to see you, and they are desperate, and the doc is THAT good, you would ask for cash only too. It just reminded me how screwed up our health care system really is.
Her office called today. They have been calling any doctor that ran any blood work on me in recent years. They told me I really should find a new primary. Wow. Its nice to know that the man who has been in charge of my health for the past 11 yrs is so bad that another doctor is telling me to run as fast as I can. I have hope. This time last week, I was trying to figure out how to teach my husband to take care of our kids (my solution... nanny), if I wasn't here to do it myself. People die all the time without knowing what made them sick. I never thought it would be the way I would go, but last week, I wasn't so sure. I am supposed to go see her either tomorrow or Friday. She is compiling all of the information she has gotten from the other doctors, plus all of her tests. She assured both my husband & myself its not cancer. I thought it was. Not that there arent things just as bad as cancer. But I have seen cancer, its treatments, and how it eventually kills you. I watched it, twice. Once with an elderly person, & once with someone who wasn't sick a day in their life. Till that person was diagnosed with stage 4 cancer. Mentally, I just cant handle it. The biggest reason: If I am ever diagnosed with cancer & its stage 3 or above, I will refuse treatment. Chemo & radiation for a few more yrs (or months). No thank you. I am all about quality of life, not quantity.My issue, its also kinda like quiting before the race. Its hard to look your children in the face if your not willing to fight for them. I am grateful it looks like I wont have to worry about that.
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