Thursday, March 24, 2011

The problem about having a vagina

I hope no one thought I was writing bout my actual vag.. Nope. Not that kinda blog. Its more about my personality fitting with the type of people who also have vagina's. I have, what some might call, a "difficult" personality. I think its only difficult because I have a vagina. Let me explain.
There are men who are very comfortable around women. They aren't gay. They happen to be just as comfortable sitting and talking to a group of women, as they are talking to a group of men. I know a couple a guys like this. They don't make you feel like they are hitting on you. They follow a conversation, & are actually interested in what your talking about. Not my type. I like the stand offish, show no feelings kinda man. The quiet guy, who isn't comfortable talking to anyone. 15 years later, I love him for who he is. That doesn't mean I don't admire those qualities in those other type of men. My friend Charlie is just that kinda guy.
Here is the issue; the same way you have men who are like that, there are women like me, who are comfortable with men. Sometimes I am more comfortable with men, than I am with women. This does cause some problems because my husband supports the theory that men & women can NOT be friends. I have strarted to agree with him, but to a point. Married people can be friends. Male or female. All single people must stay away. Then it works.
Back to my problem. I myself am the stand offish type. The only feelings that I show easily, are anger & frustration. I like things done the way I want them to be done. I curse. Alot. Its most of my vocabulary if you piss me off. I am loud. I am honest. Brutally. I am not shy. I could probably sit in a room full of men while they watch porn & not blush. It doesn't do anything for me (promise), but I wouldn't be embarrassed. If I was a bigger person, I would most likely still be getting into fist fights.
There are other women like me. My best friend in the universe is just like me. We had a talk one day on how this kind of personality can be lonely. Most men think its cool. Not the men who are in relationships with us sometimes. I have been with my husband for 15 yrs. The same things that make him want to be with me, are the same things he will frequently ask me to change. He isn't very emotional, & neither am I. But I am the one who is supposed to be. I look at things and tell people exactly what I see & how I see it. Same as him. Its not always appropriate for women to talk the way I do. So I have been told.
So how does one go about changing their personality. I don't have alot of female friends. The ones I have, take me for who I am, & love me for it. Other women expect me to have the same issues they have. I don't "FEEL" my way thru life. It is what it is. I love my children, but I am not what most people would call maternal. Play dates make my skin crawl, & I could give a shit about the PTA. My husband says one of us should be involved. He also wants our kids to make communion. They aren't, cause like my husband I refuse to go to church.
I might not walk around with my feelings on my sleeve, but like my friend said, we still have them. Because we don't need to be "cared" for, its hard for people to help us. Most men never ask for help. I only do when I am desperate. I am not a martar. I just do stuff on my own before I look for someone else to do it for me.
So this is my dilemma. I am who I am. At 32 yrs old, the idea of remaking myself so people in my life can be comfortable, just doesn't seem possible. I have no intention of changing who I am. It might be a lonely way to live, but being myself makes me happy & that's all that matters.

Thursday, March 10, 2011

Charlie vs. Brittney

I love Charlie. I loved Brit too. I think we all can see the similarities right now. The thing is, Brit's family was smart enough to see that there were babies trapped in whatever world she was living in at the moment. They took them away. I don't think she has joint custody even today. None of my business. I only know this shit cause she was walking around in a pink wig, talking w a baaaaaaad english accent, crying on the floor, holding her dog, half dressed. Good times!
Now we have Good Time Charlie. The man has 5 kids. 5 people who for the rest of their lives get to be so proud that their dad is the #1 Warlock. They are very lucky children indeed. The oldest one, I think is in her 20's. She can hide. Denise Richards is smart enough to beg the paparazzi to try & not mention Mr. TigerBloods name in front of her children. I think their ages are 6 & 7. They are old enough to understand, but young enough to hide it. Then there are those babies. Their mother has them, right? Their crackhead mother. Their crackhead mother who is waiting for a payoff, so she can send those babies right back to Sober Valley Lodge.
Charlie should be able to do whatever the hell Charlie wants. So should the rest of us. But the rest of us wouldn't be able to keep our children. There are thousands of addicts who are parents. Most, when they get to where Brit was & Charlie is, someone comes and rescues the kids. If the kids aren't rescued, they end up dead, with their parents. This is the one thing that confuses me. Doesn't Los Angeles has some sort of ACS. You know, the people who once they get a report of child endangerment, go and interview the family. Check out the living situation. Mental & drug tests for anyone responsible for a minor. Aren't the foster care systems full of children whose parents are just as RAD as Charlie?
So whats the deal? Brooke is going to get her money & Charlie is going to become father of the freakin year? Really?? Where is Charlie's family. I get that he is 45, but his children aren't. Didn't Charlie's dad play the president of the united states for a while. Doesn't anyone give a shit? Those kids mother was out w (drum roll please), Paris Hilton this weekend. If she is sober, why is she with Paris. Japan wont even let Paris in the country, because she is such a junk box. When her husband is ROCKIN his AWESOMENESS, isn't she supposed to be protecting her sons from the Mighty Warlock? She didn't look like she was concerned for her life, or worried about her children. In fact, while she was posing for pictures with her BFF, her kids weren't even around. Didn't Brit puke in Paris' car??
Fame, talent & money. It seems weather they are in their 20s, 30s, 40s and so on, some are just meant to crash and burn. I think the reason why we love this shit as much as we do, is because it shows how low life can get. Even when your on top of the world. They built the show around the man's addictions, and gave him more money than anyone else. I am confused at what they thought was going to happen. Brit's parents made her sell sex before she was legal. What did they think was going to happen when she turned 18? She is from Tennessee. My brother lives there. Most of the girls at his wedding where pregnant. Not one of them was 21. We are who we are. Weather we are famous or not. These people look like they have everything. They do. They also have the same bullshit that we have, plus other crap that most of us will never have to experience.

Tuesday, March 8, 2011

I would have no problem living on an island

There are people built for the tri-state. The people who crave crazy & chaotic. The need constant movement. They love the weather. I know this one has been ruff, but many people actually love the change of season. I only like one season. I think my body only likes one season too. One guess, & if you don't say summer, your wrong. I hate the winters, and I cant fucking stand the winters in the tri-state. Lately, my body has been putting up some protest. I know I feel better in the warmer climates, cause I felt almost normal in 2 days after landing in the Bahamas. Like I said, vacation are not with children. I still had to be mommy. It just didn't take as much out of me, like it does in the cold. I did what I had to do, & it didn't kick the shit out of me.
If I had to wear a sweater in 80 degrees, high 40's are torture. Fuck Spring. I need 85 & fast. This leaves me with very few options. Like I said, most people would die at the thought of being so far detached from the place that has "all of it". Keep it. Give me a small house close to a beach. A town so small, everyone knows everyone (its how I grew up anyway). One place to shop. No shirt, no shoes, no problem. My OCD doesn't fit? Maybe I wouldn't have OCD because I would be so laid back, I wouldn't care?
I would love it. Instead of cars, we would own mopeds (except for Anthony's work truck). My kids would get the same education the rest of the kids on the island get. The same as anyone elses' kids. If it works for them, it would work for my kids too.
No, I would have no problem leaving all of this behind. Problem is money... Anthony makes too much to walk away from it. Money that can only be made here. Doctors, Lawyers, Teachers, Mgmt, you can all relocate, & your job or your wage would still be similar. Not a Carpenter. And definitely not a NY Union Carpenter. I don't even think people in Anthony's line of work on islands, even know what a union is. What does that leave. Private Company. Not in this economy. So we are stuck. I feel like the animals who hibernate in the winter. Since I cant sleep for three months straight, this really sucks. Like I said, FUCK SPRING. Summer cant get her fast enough

Saturday, March 5, 2011

The Story of the Damned

There are the Paris Hilton's of the world. The Kardasians. I would like to keep naming people born into the easy life, so that I can compare it to my own, but it boars me, so I will get to my point. There are people like that. The people who's only problems are those that they create for themselves. The world is at their disposal. All they are asked to do is not fuck it up for their families in their short life times. Some aren't even asked that.
Then there are people like me. In fact, I can give you a neighborhood full of me's. We are the damned. Born into a struggle of some form or another. The funny part is, it goes generations deep. There is a movie. Its called "A BRONX TALE". Its should be called, the spawn of Eddie the Mush. Its a direct reference to the movie. I sit here with this thought in my head, as my back is cramped, & my ribs are still killing me. My fault. Last day away, I wore a bathing suite that I couldn't undo the top. The other three days, I spent most of my time on my stomach, & the strings weren't digging into my side. I wanted to look cute. Yes, I am an ass. Moving on.
I am thinking about the idea I have, that anyone coming outta that neighborhood is damaged. Why, I don't know. I have an idea. And I am sure, if you are from there, you do too. While on this last trip, we met a nice couple from Long Island, by way of Brooklyn. Al & Judy. They were my father in laws age, so it worked out perfect. He made friends, like I tell my boys. During the exchange of telling where we are from, (I also answer the Bronx, Auther Ave.), Al says "there isn't a place more corrupt". I smile. Now why would Al from L.I., originally from Brooklyn say such a thing? Maybe because its true, and we pay in someway every day for it.
It doesn't have to be so dramatic. But unlike the getto, or the projects, where people have the chance to outrun the circumstance, ours seem to be different. Its like we are jinxed. Too many of my friends have learned how unfair life can be at very young ages. You move, doesn't matter. It will follow you. Doesn't matter how much money you do or don't have. Doesn't matter if you are god fearing or not. Its the black fucking cloud that's always hanging. We find happiness. But its not a given. If we get it, we have to fight for it.
Is it wrong to have ambition. We all know where we come from. How most of our families survived (or still do). Is it wrong to want what seem comes so easily to everyone else. This isn't a "why us" song. I find it ironic.
Take my family. The physical fucked upness alone is amazing. I know that there is some counter part me living somewhere in this world, whos 32yrs haven't been quite so exciting.
It goes beyond that. We all learn how to suffer too early too. Mentally. The universe seems to have decided that each of us must have our cross to bear. Even the good ones. No one gets away. Sometimes I wonder what the beginning was like. I think for such bad Karma to be hitting such a small area, there has to be a reason why. Cant be any worse that that movie "Gangs of New York". It doesn't seem that the brutality of the place should matter. New York, is New York. The whole city was built on blood. So why us? I have no fucking clue.
The people I feel bad for, are the ones that get Mushed on. People we bring into hell with us. Or the next generation that we each pass the cloud to. I have started telling Dom that when he really likes a girl, he had to ask for a full medical workup. Why would I want my child to suffer the way his father is. I know he is only gonna be 7. I figure to drill it into him. Play with whoever you want. If your gonna partner up, ask for a background. If you hear "my family comes from the Bronx", you ask where. If they say the same place mommy is from, you say no thank you. The kid has suffered enough. Having me for his mother. His grandmother (god rest her soul), came to this country with her hard working family. Honest people. Devout people. She died two years ago at 54. Guess where they lived when they moved here, before the settled in Throgsneck where she was a teenager. She came here when she was three.
My family, I understand the mojo. I wont tell peoples business, but I come from people who seize on opportunities. We want. We try to get it. Any means possible. Its a way of life. For boys my age to not finish grade school, might shock other people, but it was very common. Why go to school when you could make easy money. This didn't just start with my generation. Its been forever. My family included. Is this the reason?
 I don't think we are victims of circumstance. I said it hits even the most best of people. I also wonder, are we better for it. We are thick skinned, or we learn to grow one quick. There is an underline rage in almost everyone of us. Some mask it better, but each of us have it. Even my sister. I watched her try and beat a gypsy cab driver with a club in the middle of a two way street, because he flicked his cigarette at her. There have been many times in my life that I wished I was a boy. So I could beat the shit out of other men. My husband always says he keeps looking, but he cant seem to find my balls. He knows I have them, he just cant seem to find where I am hiding them.
If you are from there, just think about it. In your lifetime, can you sit back and think to yourself, I know there is an easier way. Life is made of ups & downs. That's what I hear. My feeling is if you see that you have more downs than ups, there is a good chance you know why. Part of me is grateful. I am grateful to be able to know when I should be happy causing I am having an up moment. I feel that the people who spend most of there time in the up period, don't appreciate it. They don't look at things in the moment. I kinda feel that we do. We know that any second, the universe is going to take it away, so we try and enjoy things when they are happening. Its not always a good thing, living life with the "o fuck it" attitude. We leave behind alot of collateral damage. Not many of us are known for our self control. If we enjoy doing something, we tend to take it to extremes. I think its out of desperation.
It can be funny looking at the unMushed. Almost like observing a alien race. How can they live without suffering in someway, everyday. What kinda fun is that. Having everything go smooth. No heartache. Honestly, people like that are a little boring. They have no story. At the very least, each of us can say we have one. From time to time, I hear someone elses story. I like it when I can say, "if they can live with that, I am a lucky girl". It happens sometimes. Like at this moment, my life should be in an up. New beautiful home in the suburbs. Financially more stable than others. My children are healthy. But then.... we all know the tale. If I were someone else, I could sit and tell you, this is the worst thing I have ever had to deal with. Anyone would think that's the case. Nope. Now, I ask you this. If this isn't the worst thing, then there is other shit that has been worse. ThatI lived thru. That I can talk about. That's part of my story. Aren't I lucky to have had that all happen? Wanna know why? Cause if I wasn't Mushed at birth, I wouldn't be able to live my life as it is now. I hope you understand what I am trying to say. We carry on & live for as long as we are damned to. I can be as sick as I am, and take care of my children (almost totally by my self). I can still be my husbands companion. I can still keep my life going as I wish it to, because I was born to survive. We are constantly being knocked down, but the one thing we each have in common is that being damned has made us all stronger jinxed fuckers, and I think we are better for it.

Friday, March 4, 2011

If you have to detox, do it on vacation

As a person who comes from a family who have addiction issues, I have tried to stay away from certain things because of that predisposition. But did you know that you can have the worst withdrawal symptoms from shit that doesn't even get you high ( & by high I also mean drunk). I found that out the hard way on our lasted trip. By the way, I haven't had an actual vacation since my son Dom was born. Everyplace we have been to since is called a trip. Vacations do not include children. My next vacation will be in 14yrs & one month. Dom will be 20 & I will chance that he & AJ will survive while we are gone. Sorry, got sidetracked.
We arrived in the Bahamas on a Sunday morning. I already was @ the 48 hour mark off stopping all medications that my previous doctors put me on. I thought the first 48 would be the worst. WOW was I wrong. I was awake for those first 48 hrs. No shit. Except for 2 hrs ( I know that means 46 sorry again), I was up & wired. The nest 36 weren't so fun.
It started with not being able to control my body temperature. I am usually cold, but this wasn't just cold. It was like standing in a freezer, but then I would start sweating. That would last for all of 10 minutes, & then all of a sudden it felt likely insides were on fire. I know what you are all thinking... why didn't you ween yourself off. The reason is easy... I was told nausea & vomiting. Been there, done that. Once I got thru day two (straight without sleep), I figured I lucked out. NOT!
This continued the whole day Sunday. By this point I was so tired I couldn't keep my eyes open. We are on vacation & I told my husband I didn't think I could do dinner. He was so upset (he was watching the freak show all day & again felt helpless). I couldn't bring myself to hurt him & make him go to dinner with just the boys & his father. His dad is just a widower, & I would be making him look like one too. By the way, they would have picked up BIG TIME. I pulled my shit together & went with them.
My new diet makes eating out very exciting. I got to meet the chef @ every restaurant we ate at. Explaining celiac isn't as hard as you think, & they all were very helpful. I still felt like a freak. But with my order of appetizer mashed potatoes & petite feliet entree, guess what happened? Can someone say nausea. Anthony begs me to eat the whole meal. I want to die. As a drink, I am switching from ice cold club soda, to chamomile tea. Yes, at the same time. I also am putting & taking off my sweater every ten minutes.
The torture finally ends & we go to the room. Did I say it ended. Not really. Just the public display. I am nauseous, but because I told Ant to fuck off & eat, I don't vomit. I dress for bed. Sweat pants, t shirt, my sweatshirt, & Ant's hoodie over it all. If I could crawl into his body, I would have. Any Twilight Fans. I was Bella on the mountain. He was my Jacob.
I sleep on and off, but cant move. Before bed I took a whole xanex ( I never take a whole ), so I sleep thru the shivers. The shivers are what wakes me up every once and a while. I guess that's what an epileptic feels like. I suffer in silence. I cant let my kids or Anthony see me like this. Buy 5:00 am I am able to get to my feet, & get to the bathroom, because even though I didn't vomit, whatever is doing this to me wants out. I peel off my clothes. They look like I stood outside in the ran. Freezing, but dripping g in sweat. I cant stand yet, so I laid in the bath (I shkeeve) & fill it with hot water. I mean HOT. 30 minutes later, I felt strong enough to stand & shower. 30 minutes after that, I feel like I can start to climb out of hell.
My family is now awake & ready to go. They get suited up. I put on another pair of sweats. We went to breakfast & I beg the waiter to sit outside. I cant take the AC. Again, Anthony begs me to eat. I want to slit his throat. Yes, I am around 89lbs, but can u give me a break? I don't have an eating disorder. I am just sick. Once the withdrawal gets better, I promised to eat as much as I could.
He thought I was having a reaction to the new Vitamins I am on. I asked him hasn't he ever seen an episode of celebrity rehab? He asked why would he watch that shit. I said cause its funny. I wasn't laughing at that moment. The rest of the day, I drink 2 liters of water, as much juice as I can get my hands on, plus the saltiest food I could find.
By Tuesday, baby steps & I am eating pretty normal. Well... as normal as I can be in my current situation. I can tell you I now understand why junkies don't want to go thru that. If that is what happens & they are taking crap that makes them feel good, why the hell would they??

Saturday, February 26, 2011

Maybe Just Maybe...

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.

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.

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.

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.