This is not a disease it's my life style: Giving up

This is not a disease it's my life style: Giving up: I want to give up some days so bad. Give up on what one might ask? The answer is I really don't know. At times on me and other times t...

Giving up

   I want to give up some days so bad.  Give up on what one might ask?  The answer is I really don't know.  At times on me and other times the world around me and the time that is left I can't really say.  I think I have let being sick mess me all up and turn me around.  The now is something I am still trying to fit into.  I miss the me from then, when my body did not have a lot to say.  I have lost myself in the red tape that comes with getting sick.  People ask as if I went out shopping for a sickness, compared some then brought the one best for me. Lol not really.  I will say I was not prepared at all in my life for this, not in the lest bit.  It is just that some days I got it and the other days who knows.
 
  

This is not a disease it's my life style: IT

This is not a disease it's my life style: IT: People look at me with this lost look trying to magnify into my body to see the sickness I just told them I had. Looking at me as if I...

IT

     People look at me with this lost look trying to magnify into my body to see the sickness I just told them I had. Looking at me as if I should look like "Night of The Living Dead".  Not knowing the meaning of autoimmune or disease for that matter.  Thinking to them selves they know Cancer, they know Aids, they know HIV, but they don't know jack about this here.. it's funny because you can see them thinking on what to say next what to do next. For me it's cool if you have no idea what to say or do, what would work for me is if you read and inform yourself.
    This is from ALL of us that suffer from an autoimmune diseases, read about it, ask a question, Google it, care about it, give to it, get informed do something.  Help us, Help you    

Test

   Do you remember those Friday's when we had those dreadful spelling, math, ''pop quiz's and or any other test? I hated those days, forget the weekend they just jacked it up for me with them dam things.  The older we got and farther we went in school those test still hunted us,but on any day of the week.  Lately the test I take are way different and have letters and funny names, so far none painful.  As I take each test I kinda talk to myself , sing, make up jokes and what ever else came to mind. I have had one test that FREAKED me out to the point I started to cry.  Ok it was an MRI now I have had  a few before but this one was of my head and neck.  Let me start by saying they put a block sponge on each side of my head then they put my head in this plastic head cage and finished me of with a topping for the girls.  I was slid into THIS chamber half way in and soon this sound stats.... bong, bong, bong and as I'm inched back an forth the tons and beats changes on the bong. plus I couldn't move at all.  For the first ten - twelve  minutes I was cool doing my thing singing, humming, laughing then something happened I freaked out.  I don't know what went wrong I started crying and moving around the tech finally had to pull me out to reassure me I was OK and tell me it was only six minutes left.  I tried to suck it up and do the best I could, but man that was the longest six minutes ever.  When it was over I wanted to pull all that shit off of me and run.  Ha ha ha ha.  I don't wish a test like that on my worst enemy any day of the week.
EKG, EMG, MRI, CAT scans, DEXA,Ultrasounds, X-Rays and ones I can't remember including any other and all test by blood.  I get a round of check-ups on all stuff inside every six months or so to make sure THIS or the meds aren't making anything worse.  I hate these test and don't wish then on anyone and on top of it all you can't study.  The only test I don't mind getting a negative mark on.

   I can say I am not scared anymore of the negatives or positives that come my way, I'll just keep singing, humming, laughing  and dong my thing.

TTFN

2010

   April 16, 2010 was as Friday and my BFF and I went to Atlantic City with some friends and their friends.  From the start of the trip my knee (right one) stated to ache badly, by the end of the trip I was in so much pain I wanted to chop it off.  April 20,2010 I woke up unable to move my body from the neck down, my whole body was swollen and in so much pain ( to this day I can't explain the pain).  The nice people in ER said I was a bug and it would pass.  Ha ha some bug it turned out to be.  So two weeks later I was able to move a little bite better but not all the way back to me then I can't remember who but someone started to find me a doctor with some answers.  I went to two doctors nothing and then my government worker suggested that I go to a HIV clinic, I thought she must be some kinda crazy yet I went anyway.  Let me start by saying they where the nicest bunch of people in one doctors office I've ever come across ( thank you).  After tons of tubs of blood and a week later the doctor called me on my way home from work and told me it looks like Lupus, she told what I needed to do alone with seeing a Rheumatologist.  So I called the Lupus foundation and they sent me some information and a list of doctors in the area, called a few and the one I ended up with was not for me,she did not listen not my problems and concerns.  She put me on prednisone that did nothing but made me hungry as hell.  I was still in so much pain, swollen and stiff as all get out.  I just wanted answers and she was not helping me, but I stayed with her hoping my feelings towards her change.   August 5, 2010 I'm at HSS in New York it is a good hospital so far I'm still in ass picking pain an more to put it mildly, but now I move more freely without as pain all the time.   I guess the 26 pills I pop all day play a part in the way I move.  It's been a very interesting year and some change so far can't wait see what happens in the next 6 months. TTFN

single-parent-now -then

   Now I don't know which one is harder being a parent now days or being single.  I know I would not have wanted to be both a hundred years ago.  I wonder if parenting was easier?  How about dating? How bad could it be to have a man or young man come to your house and ask if he could court you or your daughter, better yet have someone ask for your hand in marriage to the elder male in your life. Now most parents don't get to know their own child let a loan the person they are spending a lot of time with.  As a parent I fear a lot of things predators on and off line, fast girls, bad boys, drugs, alcohol, fast food, fast cars, fucked up schools system and a list that goes on and on. As a single person wow that list is even longer.  I feel as if people have forgotten how to be human.  We don't take our time to get to know ourselves, each other, have compassion for one another, lend a helping hand.  We are all  in a hurry to get nowhere.  I would love to find a guy that cared enough about getting to know me as he did about getting into my pants.  I would find it refreshing for a guy to ask if he could court me and understand what is meant. I am not saying to turn back the hands of times, but maybe bring back some old fashion values.  Show our children what made us grate so that they can become better.
  Just my thought take or leave it      

SEX

   Well how many of us love this? OK backspace not everyone but a lot of people love it: well let me speak for myself.  I love it and if I could shout it from the mountain top I would.  People get their panties all in a bunch every time that word SEX,SEX,SEX,SEX,SEX,SEX,SEX is said.  My head did not just blow up or anything crazy.  Sex is such a beautiful thing to be shared by two people. Man sex is NICE :).  Now when I got sick I stopped having sex because I was afraid that my body would stop working in the middle of the whole thing.  This has been going on for a min now and this shit sucks.  Now that body is not on total brake down all day I've become afraid.  Of what I am not sure. ( Hell maybe I'll find an answer as I spill my stuff for all to see) Now I want more then sex,  a friend someone to tell my day to,someone I can call just to hear his voice, to be a rock and have a rock to lean on the list is on going.  I know am afraid of someone seeing me sick, seeing me helpless. He would have to be a  real man a grown-up in order to deal and want to keep dealing.  I said to my BFF awhile ago " Why would any one want me, I am sick."  OK I find myself very sexy and beautiful, in case anyone thought.  I use to be or tried to be SUPERWOMAN in ALL that i did.  Now I am just a woman.  I am working my life back one piece at a time and I can't wait till I get to the sex part.

---It summer go out and meet someone new---
 

What's BULL SHIT

   I was just sitting around thinking of everything and nothing at all and at some point this is what I started to think of.  What's Bullshit...... being in pain, the price of milk, the price of gas, family moving away, getting sick at 37, kids when they don't listen, people who pick on the president, hiding from the sun, swollen feet and hands, Weiner and his weeny, people not allowed to marry who they choose, being alone, that purple dinosaur, absent fathers (mine include), tingling/numbness in my right arm, people who can't say excuse me, losing loved ones, the price of an education, insurance companies not willing to pay for needed medication, people who don't appreciate a true friend, taking 12 pills puls a day, mean people, having nausea feeling just about all day, having to mop the floor, feeling lost, wanting something but not knowing what, not feeling the warmth from the sun, gaining weight every time I look at a piece of cake, missing how I use to move and at times just missing me.

   I was having one of those days when my body was hurting, my mind was hurting and racing. I wanted to crawl into a hole and just stay there.  The only thing that keeps me from finding that hole is the fact that I am a mother of 3 and they need me.  Hell I need them just as well.  When I first got sick I was bent with fear on what would happen to my kids. At times just as everyone does I cry and cry.  I know I will get through this with flying colors no doubt, but it is just....................

peace for now   
     

Kids

   Kids, what else can I say about them? They are what they are. As a parent we love them so much that at times it does hurt.  The love that is for real unconditional. As soon as a person has one of these helpless, beautiful, innocent little people they are bound by this unwritten code to do good by them.  It's kinda of hard to explain......no it's real hard to explain, unless you have lived it.  Now as a parent I love my children more then i love myself most of the time.  Hmm as soon as I said that it seemed sad, but trust me it is not at all sad.  They bring more joy and smiles then any pain they can bring, and they can bring some pain.  For the first year or two it's pretty smooth and then something happens, they learn to convey wants, thoughts and feelings.  That is funny and cute at first then they learn they have control over themselves and at times others around them. Now the party starts as they began to grow and learn.  With my three loveless the party never stops, the pre-teen is at his I know EVERY thing faze, my 10 year girl I don't know (girls :), and last but not least the four year old who knows he can control situation around the house. 
  I want to do so right by my kids but when they act as if I am trying to hurt them that hurts.  lately I've been saying "oh mommy don't love me, mommy don't care for me" when my kids start huffing and puffing after I ask them to do chores or homework or hell anything. I've told them the things I am teaching, telling, show them to do are life long lessons and I am doing all of this out of love so deal.
  I as other parents only want our children to grow up to lead happy safe lives.  I hope my kids will look back on their childhood as I have and understand why?
  I love you Noah, Niya and Aza

Men- Women

   Well I was told that women give and men take and after many years of giving I see what was being said.  Women are bearers of life and that alone in it self is a giving act.  Men take the reward of planting the seed.  I wonder why can't a woman take and why can't a man give. Not forever, I know it's in our DNA but at times. I think that if we take on some role of our partner every now and then we might lessen their load and understand somethings.  Hell maybe people would stay married longer. I don't know just speaking.

This is not a disease it's my life style: FRIENDS

This is not a disease it's my life style: FRIENDS: " Friends, how many of us have them? As I sit on the phone today for hours with my two BFF, talking about everything and nothing under the..."

FRIENDS

   Friends, how many of us have them?  As I sit on the phone today for hours with my two BFF, talking about everything and nothing under the sun.  We actually sat on the phone at times in silence as if we where happy with not saying nothing.  Missing each others comfort and support that use to come with a knock on the door, now miles separate us.  The not knowing how the other is doing at any point of the day is unsettling at times.  Now I have to find new friends :(  For me it is hard to make friends.
   I don't know what it is.  I feel different lately, I have been fighting the feeling of not being good enough. I am not trying to blame being sick, but....... I am tired of being along .  You know the worst question people can ask you when you are feeling lost? Why aren't you married, in a relationship whats the matter with you?  Wow what's the matter with me?  Why do people think it is me? Like I control the male race. I want a relationship, to be married, in love, someone to care for me as I would do for him.  I think about it from time to time, but I don't dwell on it. It is what it is.
   Now I don't care for being in hospitals or having to see a doctor often, yet I want to feel better.  Popping pills is not working very well, taking eleven a day and twenty on Sundays just seems to make me sicker.  Now the sun is becoming a problem, it sickens me.  Hay but no sign of a rash :)  I have to stop drinking all together it does not mix with my meds. When my father sees me drinking a glass of wine he flips, I understand dad and thanks.

my youngest giving me thumbs up when I was not feeling well

I am not my DISEASE  I am just Crystal

Why ?

      At times people come to me, or come at me with the improvements or to complain about my parenting skills.  Why is that?  Now these are the people that: (1) have no kids (2) has paid help around the house (3) my son's father.  I am always lost and hurt by this when it does happen.  I am their PARENT not their friend.  I am teaching, instilling good values, helping learn some life lesson and a ton of day to day things I do. I am a realist when it comes to parenting. Example: I let everyone know I am washing clothes so put all dirty clothes in the bags to be washed.  I say this oh 10x and after that your lose.  You will go to school in a dirty uniform.  One more example: If you are to sick to go to school then you are to sick up to get out of bed. In life if you make no movement you get no action. I don't do it  w/ everything they don't get right or chose not to do or are just being a kid on. I don't want my children to grow up w/out knowing how to care for them selves, each other and others. My children are smart, kind, funny, sociable, understanding, talented and I can go on and on about who they are now.  And I can't wait to see the them they will become.  I will know some of that came from me.  :)
    Do you want to hear some F-ed up stuff?  Ok my neurologist has canceled my appointment that took my 2 1/2 months to get, and top of that told I can't reschedule until the end of the month.  My right arm is killing me, :) it's hurting now.  I would just like to know what the ? is going on. I hoping my doc. can get me in there a bit sooner.  Oh I am starting to notice that my meds. works best if I take it easy. Kinda like not walking, up and down stairs oh and no stress. ( just smile). Oh I can remember when I was younger, no pain. :)  

Being a Mom

   At first I felt being a mom was a fairly easy job until my now 12 years old son started to talk back to me.  The first time he had raised his voice to me I felt as if my world had fallen apart.  My 10 year old daughter has now hopped on the band wagon of " I gotta attitude" tour.  They both think that I got to be dam near forty by doing what ever the hell I wanted to.  I wish......well no I don't I am glade my parents cared enough about me to tell me when I needed to get it together.  I don't reminder when kids changed from nice to what ever they are now.  Kids today are very different from what I was when I was younger.  For one they are so lazy, NO they are lazy as hell.  Anything that requires any movement at all is looked upon as a death sentence. OMG don't ask them to go outside and play get some fresh air is like asking them to breath in acid spores that will on contact burn their lungs and leave them in agony and pain.   Before we moved from Philly there where times when my oldest wanted to take his DSI outside to talk to his friend who was sitting on the steps next to him.  I would get so lost by this question and he would get so mad when I told him NO he could not use that thing outside to talk to someone sitting next to him.  Have we gotten so mixed up that the only way we can speak to each other is by some sort of computer, If that is the case now wonder why our kids are turning into mini ass hole they have no people skills. Hell my daughter sends me texts mess. from the living room and my youngest wants to email mail like Elmo.  Really!   I hope we get back to basic one day.
A rethought-being a mother is kinda easy
T T F N

Wednesday :)

   I love my therapist, she says the simplest things that make so much sense.  OK she said one of the first things to do when you want to beat or wave off depression is smile. The more we smile, the more positive we become, that in turns gives off positive energy.  A smile can change ones life if you look at in a full circle type of way.  I understand the smile more things and it takes more muscles to frown then to smile.  I also get sometimes it is easier said then done.  I at time I have to smile at the things that make me made just in order to stop from crying, now I am trying a different approach, just smile for no reason at all.  I started this and at first I felt crazy, now I feel good  sexy even.  People even smile back most of the time, I am quit sure some people think I am crazy, but I don't care it feels good.  You should try it.

    A very good friend of mine told me be for she passed away " Chriss- Po you need to stop acting as if you do not need help with raising your kids"  now she said this no a norm but no day it clicked.  She was right I did and still do need help even more now that I am sick.  What I did do after I realized I did need help, was get my girlfriends together and we started taking weekends.   Which gave us all two weekends free.  Dam do I miss those weekends and my girls.  Friends are hard to come by, so don't forget to tell them " I love you"

  My doctors have no real idea what is going on with my body and that sucks ass, badly.  It's funny how with all of these tools in the field of mediation the human body is still a mystery.  All I can do is smile. :)

 I am going for now.  TTFN 
   

Where Does Time Go!!

   Wondering where time has gone when someone you know is close to death, is a bitch.  I try not to wonder about anything, but I am only human.  My thoughts get the best of me and the tears wont stop.  My best friend passed away in November of last year and each day still is a struggle to accept her death.  We had made so many planes for this summer ( silent laugh ).  Everyday she is missed by many and for that she will live on. Death sucks no matter who is doing the dieing be it family, loved ones, friends, strangers and  foes.  It is a point of one return. lol  Not funny really.
 
   Now the worst part of being sick is the fatigue part that comes with "IT".  Yes the pain, swollen joints, stiffness suck ass, but being tired for doing nothing really sucks.  Some days when the other stuff is not bad the fatigue is more then enough.  Just getting out of bad is tiring and having to walk for a distance does seems to cause pain. My whole body get heavy and it's hard to move, just a very strange feeling through out my body.


  I have a four year old son who to say the least is a hand full.  He is not at all bad just smart with a quick wit.  He says the funnest things I have ever heard from a child, and I have heard a lot.  The other day the kids are siting down watching TV and a Victoria's Secret ad comes on and he says " Hello ladies" with a oh lala voice. At four, then he shows me his age by laughing at his farts.  Oh that's not right mostly all man (18 +) laugh at that, hell my oldest son at 12 does that. Somethings never change.


   For now I am saying see you later

        TTFN

Looks

      Am I ugly?  How does one no if he or she is ugly?  After I got sick I felt like that a lot. I had gained ten lbs. in a lot of pain and just felt fat.  Even today I feel like that, not the fat part, but the ugly part for sure.  I started to
feel that way because of the pain and the weight gain, first the hair stop getting done (sitting all day was something I couldn't do), I started adding sweat pants and t-shirts to all of my outfits. I just felt blah all the time and changing that thought pattern is hard to do.  Truth be told it took me years to think I was anywhere near being attractive and months to tear that thought apart.  Its just been a long time since anyone (guy) has approached me for anything more then direction.  Maybe it is all in my head, I really hope so I miss that touch.

   T T F N

Rejection

   Yesterday was Easter and I made dinner, my mom and her girlfriend came by and we had a nice time.  The food turned out good I am still trying to learn how to cook a roast.  Now let me say it was good, but my bf makes a roast that will make you want to smack your mommy. Her roast is ALWAYS tender and would fall apart just by looking at it.  Dam I miss her and her roast, she moved to Phoenix, AZ now that's far away.  All and all it was a nice day.

  Omg, ok I meet this guy online about a month ago and we have been emailing, them im and texting.  So last night I invited him over, ok this is the funny part.  He came over we made it half way up the stairs and he says " I left my ear piece in the store on the corner, be right back".  He never came back, it took me about 7 min. before I realized he was not coming back, that kinda hurt.  For a second I had a problem with me the way i looked, my sexiness then i snapped out of it.  Really i just deleted his number from my phone and email from my computer.

   An insight into my health ( when ever I say health I laugh to myself ).  I have been having a wired tingle  in my right arm, starting at my elbow going down to my fingers.  It has gotten worse since it started two months ago.Hell (say the title), I go see a neurologist soon and lets see what he or she says.  My therapist says live my life as if I am not sick.  Do what I can on the days that i can do them, easier said then done.  I am working on that as well.

   On a good note....... I have been eying my mailman for months, hell since I moved here.  He is tall, dark and handsome (sexy), beautiful smile.  I finally got the nerve to ask him if he would like to have a cup of coffee w me and he said Yes.  We did not exchange numbers maybe tomorrow. :)  That made me smile.

   Well I am going to end this for now until next time "Stay Safe"

   Today is April 22, 2011 and at times my days seem to run into one another.  There is not much going on in my life from day to day that is exciting.  I do know that today i am feeling good a bit tired tho almost sluggish.  I really want to do a whole bunch of stuff around the house and outside, but I know I should sit my ass down
somewhere. The days that I am not 100% I have a hard time keeping a smile on my face and have to fight back tears for most of the day.  As a parent it is even harder to smile when I have to tell my kids we cant go anywhere because I am not feeling well.  I can say that if I did not have faith in something I would really be crazy.  My health seems to depend my what I do from day to day and I think my mood, I know my level of stress has a grate deal to do with how I feel or to say it better how much pain I will be in very soon. 

   I use think of myself as wonder women now I have been rethinking my own self worth.  Now, that is a very hard thing to come to grips with.  I, me have not changed one bit, I am still me in every since, yet I feel different.  I cant explain it or even put my finger on it.  There are times when I have to remind myself that somethings I have to rethink how I am going to do something, when I don't I do pay for it later.  I have not known pain until I got sick, hell I did not even get sick a lot so this is all new to me.  So I went from being a healthy person to a healthy person with a small problem. lol

   Well i am going to end this for now until next time.

Here we go

   Well today was a day that caused me some discomfort.  OK I am on public ass. and I have been come to realization that it is set up to create loos of hope for the needy.  Now that does not set one race from the other if you need help they might give it, but they will take your hope,  your fight and anything that you can win with they take.  Does anyone one wonder why they do this?  Do we care that they are?  I think i know why, but who cares? 
   Yea going to any of those places kills my song for a min. one can walk in with a smile and a dance an walk out with doubt about tomorrow.  If I did not need their insurance I would tell them where to put their bull-shit.
  I will say I will never be defeated, maybe upset but not defeated.  All I can do is stand up straight, hold my tummy in, shoulders back, head up, take a deep and smile. It might sound corny but it does work.  Oh and don't forget to believe in yourself.  Yes I am talking to you.

Until next time.     
    
  

intro

   You must be wondering what the title of my blog is truly about, but i will get to that soon.  Let me start by introducing and telling a bit about myself.  Hello my name is Crystal Mora and I am a 39 year old single mom of three.  I was born in Detroit, Michigan lived in North Philly now I reside in Queens, New York as of a few months ago.  I will say I love NY a lot, not more then any other state that I've lived in just different.  The living space's is smaller then the four of us are us to.  I guess we will learn to adjust or I hit the lottery and I can buy us a house.  I op for the lottery one lol. 
   I am going to be blogging about my life as a mother, daughter, sister, friend, etc and giving sense to the title.  I hope to see u back here. TTFN!!