Are you positive or negative?

What kind of person are you?  Are you a positive or a negative type of person?  There are only two types really.  I know we can all be both positive and negative at times, but we have just one tendency.

Me, I'm a positive person.  Oh yeah, I do get negative, as in I have to do some venting from time to time, but I turn it around and find the positive out of everything.  Negative people seem to be attracted to me, all the time and it's fine for the most part, but sometimes it drives me insane.  I mean when they are just always negative and they don't have a positive thing to say, ever, never.  Come on, really.  Can't they just for once agree or say yes or even maybe.

I would love for the chance to make them be the character that Jim Carey played in the film, Yes Man.  Now that was funny and great to me.  He was a guy who said no to everyone and was, well kind of brain washed into saying yes to everyone otherwise bad things would happen to him.  I thought it was great.

Anyway, in the end it just made him realize that in the end if you open up your mind and be positive, good things can come out of it and being negative is exactly that, negative.  I'm not saying its bad to say no, because there are times you need to say no, like say no to drugs and say no to dangerous and illegal things or if your kids are doing something wrong.

For the most part a baby's first word after "mama" and "dada" is "no", but that is only because it is rote, you know told to them repeatedly so they are just saying it back to you.  "No, don't touch", or "no, you can't have that".  This is not the negativity I am talking about.

The negativity I am talking about is the one from the movie and for those of you who haven't seen it, it's the bad energy and/or feeling you get when you  when you talk or meet someone that you just really don't want to continue talking to because they bring you down every time you hang around with them.  You know who I'm talking about.  We all have friends like that.  Oh yeah, got you thinking, huh.  They call you just to vent or if they need something, never just to chat or let's say, just hang out and want to talk about funny stuff like people watching in the mall or the weather or politics.  The conversation always turns into them, ahhhhhh.  Do you have a few or even one particular person in mind?  Now take that person and see if you can get positive energy from them.

Positive energy is wonderful.  I know opposites attract, it's natural like a magnet.  This may be why they are always coming back to you for what they call advice, but it's really not, it's like crack or candy to a baby.  They need you or another positive person and in a way you need them, but you really don't because you are already positive so you really don't.  They need you to become neutral or stable for a while until they get so negative again they need their fix.  This is my thoughts anyway.  I have thought a lot about this subject, because I have a handful of negative friends or at least I feel that they are or they are neutral and need that fix to be positive.

So what happens is that they call you or come over and vent, or get your advice on something get your positive flow they move on for a while.  It's almost draining at times.  Then after a while you don't hear from most of them until they need something again.  Some of them need this more often than others and may look in several different places for this positive energy.

I am not saying that there is anything wrong with this at all, because we all need someone, we really do.  But, what I am saying is that we should always look in different places for positive energy.  You can talk to different positive people to gain this fantastic energy.  It doesn't have to always be from one person, because it can be draining on one person.

So in the long run, you need to find out what type of person you are positive or negative and once that is done you need to find out if you are a giver or a taker.  This can also be easily figured out.  And that is a whole other issue in itself.

Another day, another task.

So how many unfinished tasks or projects do you have laying around?  I have about a billion.  I love doing things, but my body hates me doing things.  I hurt every day and I mean hurt, pain, ache like I have the flu every day hurt pain.  It really sucks.  Don't pity me, please, don't!  I have been this way for a long time.

I get up, some days early, some days, not so much.  It all depends on the day.  I have no clue from day to day what I am going to feel like.  That is the crappy part.  Today, well I have a clogged (not really, but it feels that way) right ear, stiff neck, massively numb left side and achy body, 9 on a scale of 1 to 10.  I would love to break down and cry about every other hour today, but what would that do?  Make me feel worse about myself and thats about it.  I cannot take NSAIDS, you know aspirin things to that nature, I'm allergic, so it just makes it more drawn out for the day.  The only thing I have been living on lately is Tylenol again.  It just gets old, quick.

So I do the best I can, try to occupy my time, with whatever I can do at the moment.  My hands hurt so I can't always do a lot of typing for any length of time, my left side gets sloppy, number and goes rubbery on me quick and both hands lately, well arms and hands have been real bad lately waking up in the middle of the night with them totally numb.  It's starting to get on my last nerve, lol.  Like I have an option.  Being young with the body of an old woman makes it hard.  Thats how feels for me if you have to put it in perspective.

I try to do different things to keep busy and keep my mind strong. Things therapeutic.  I have no clue if it helps me or not, but I feel if I don't do anything they will get worse.  I feel like I was hit by a truck today.  I slept for 12 hours because I must have woken up 3-4 times last night in pain.  These past few months have been crazy, actually this past winter has been bad.  I need warmth on my bones!

I think the projects keep my mind occupied too.  I try puzzles and games and I have been trying to write this book.  I want to work on a garden this Spring.  I just need a new body.  Any takers?  I have so much I want to do with my life and I feel as if I am so slow at doing it.  I know, I know, one day at a time.  I tell myself all the time.  I am positive.  Slow and steady, take all things slow and steady and all the tasks will come to a great close.

I can see the end and it is beautiful. Be patient and how does that old saying go,"all good things come to those who wait".

Google

I have to admit it.  I love google.  I know, I know it may sound crazy or nuts, whatever you may want to call it, but I do.  I mean I have encyclopedias and dictionaries in my home, but google is so fast and it just makes it easy.  There are so may search engines out there like google.  There are ones like Bing, Yahoo search, Ask.com, AltaVista, Cuil, Excite, Go.com, HotBot, AllTheWeb, Galaxy, Live search, Lycos, Giga Blast, and Alexa Internet just to name a few of the general or all purpose search engines.  Ask Jeeves was one that was quite good for some times but they closed the doors or retired to put it in better words after 10 years and takes you directly to Ask.com.

There are so many search engine sites that have come and gone or merged that it makes it hard to keep up with.  I have used Google since they started in 1995.  It seems like a lot longer to me, because I have had a computer since well, lets just say since a very long time and they were very expensive.

My first computer was a Tandy.  Well actually it was an Atari 5200 with a keyboard that you could actually program it to the TV to run commands, then it was my Tandy which I still own.  It was from the early 1990's.  I can remember having an internet connection dial-up speed of 9600 and that was with Prodigy, haha.  Now that was something.  It was 94-95 and I was so happy when the internet speed was upped to 14400 then it just kept getting faster to the point that I had to build up my computer.  Woo hoo, it was great.  I can even remember what the heck I did online then, but all I know is I think it was around $20-$30 a month.  I watched the internet era upgrade fast and it was wonderful.  I went from calling it the World Wide Web to WWW.  Now I own a Mac.  I love my Mac.



I was totally a PC person for a long time.  I could tear it apart and put it back together agin top to bottom, inside out.  It didn't matter what was wrong with it.  The you have the people out there who just want to wreak havoc and create viruses and trojans etc., why?  Who knows.  For something to do I guess.  For the fun of it or just because they can and they are getting back at someone for something the did or didn't do to them.  Well whatever the reason it just became too much for me and I crossed over to the Apple side.  I am not saying I still don't use my PC here and again, but I do prefer my Mac over the PC.

I can still do the same things online and more as the PC, so I am quite happy.

Anyway, the internet search abilities became endless and the possibilities were just so incredible for everyone.  Whenever something better came or improved it was just 10-fold every time.  I believe this was the beginning of the new age of the technical era or the turning point.  Now that its nearly 20 years later look at what we have around us today.  Computers that practically run themselves, cars that don't need keys to start, keyless tablets; phones that are just incredible to play with, work with and utilize all the way around as well as  appliances that have the same computer knowledge built into them.

As for the internet, it has grown so much that nearly everyone uses it every day for some reason or another.  I would put a bet down on it.  I know that 90% plus of all my friends and family use the internet at least once a day to look up something, does yours?

What do you want to be when you grow up?

How many times have you changed your mind since you've been, oh I don't know say, seven about what you wanted to be when you grow up?  I know I wanted to be everything from an architect to a spy to a race car driver.  Well I didn't do any of those, but they would still be cool things to do.  Practical, well not so much, but cool nonetheless.  The architect could be practical but the others, no way.

I was about seven and I can remember my love for the outdoors and animals, so maybe a vet.  Oh heck no I thought what if they died on me.  I could never take that.  That idea left quickly.  As I got older I found that I enjoyed the arts and  I loved to teach and show people how to do things, so a teacher would be a great job and still would be.  Teachers are hard to find and really great teachers are even harder to find.  But teaching well, its kinda boring and mundane to me.  Thats just not me.  I need more excitement and fun and just overall I guess not thrill seeking, just like I said fun.  The more I thought the more I decided being an architect was out even though I love to craft, build and design and I am detailed about many things.

                                          

I do have many OCD, obsessive-compulsive disorder, qualities about myself so there are many job that would fit into that category.  I like to be precise and exact about everything.  I do not like to have to do things over, unless of course they are wrong and boy do I dislike being wrong.  I will admit it when I am, but I don't like to be.

I have had a host of job during my life so far and I loved them all.  I've been a nanny, a waitress, a bartender, a banker, a security specialist, a secretary, a CPA assistant and I even made pizza.  The list goes on believe me.  I  think my favorite job was then I was the marketing rep. for a race track.  I loved that job.  Fast-paced at times and precise because of the marketing aspect and it was a race car track, so I fulfilled all my wants and needs.  I was there for a long time and really loved it there.  This was actually my last job before I became sick.  Well second to last.  I tried to go back to being a secretary for a short time, but I just kept getting sicker and that ended that.

If I had the chance to do it over again, all I would do is finish my college degree, which I am only a few credits shy of and then I would still try all sorts of jobs before finding the right fit.

If you're not happy at your job why are you there.  I know today you should be grateful to still have a job, but you still need to be happy.  I can always remember the saying and I have no clue where it came from but it goes, "If moms not happy no one is happy".  Well the way I look at it is if you're not happy with yourself anywhere, home work or play how can you be productive anywhere?

So just remember to ask yourself, "what do you want to be when you grow up?"  It's never too late to go back to school and better yourself.  You can go at night while you still work during the day.  I better you makes a better you.  I know that may sound weird but if you feel better about yourself it shows all the way around inside and out.  Go for it!

Arnold Chiari Malformation continued

Alright where was I.  This is the continuation of my post not too long ago about Arnold Chiari Malformation and medical issues.  For those of you following me or just stopping in to read my blogs, articles, posts, vents, whatever you may want to call them I wanted to continue on about my medical life.

I was getting immunotherapy shots, or started.  I went to the office and we, the doctor and I together, decided that we due to the high IgE level we'd start off low.  I owned an outdoor cat, never pet it, I knew better.  I would instantly get swollen red, glassy red eyes, itch, sneeze you name it.  But the cat was fun to watch and my kids loved him.  He actually adopted us.  We live in the middle of no mans land.  Oh, and the fact that my ex-husband and daughter fed this kitten milk, yeah that could have done it.  But he was really sweet.

Anyway, they gave me one little shot, have as potent as a patient would get starting out and you have to sit for a half-hour to make sure you do have any reactions to it.  Poof! One or two minutes went by,could have been three, but it was really fast and I started getting hives on my feet one, two, three then itchy, then it just started escalating into the itchy eyes.  Oh boy, here it goes I was just hoping that they weren't going to have to jab me with the Epipen.  Within that half hour I had a lot of hives and was just forget it, had to take medicine for it.  It was a nightmare.  I swear I didn't want to do that ever again.  Well, four days later after feeling a little better we decided we would not do shots for cat, maybe never.  Lets move on the the next one, dust.  Ok, we cuts that in half.  Same thing, hives but this time only 4 or 5 on my feet and they were gone within that half hour.  Hmmm, ok.  Still not good, but better than the last time.  I'm thing how is it better, its still hives.  I really knew, but I was just like what the heck.  So again four days later I go back and the doctor wants to redo the dust but, lets cut that half in half.  Ok so now were at like 0.00025 or something miniscule like that.  Believe it or not, same thing, hives on my feet.  Like 4 or 5 of them then gone within the half hour.  Now they make me sit there for 45 minutes, just in case and I'm fine with that.  They want me back in 3 days to do this again because the shots are so small.  I go back and now they want to cut that.  We're now at 0.000025, holy cow is there anything in there?  Hooray, no hives.  Yippee, but still there 45 minutes, just in case.  Now since is so tiny of a dose I am ok'd to go every 3 days for shots, but heres the catch.  I can only have one at a time until the doctor decides otherwise because of my reaction.  Wow this is going to take forever.  Now remember my Ige ( which is what fights allergies and supposed to be 120 or below) is at 3060.  I am reacting to just about everything I was tested for even worse because of it.  I was a level 4 for cats, but because of my IgE, it makes it that much worse.

I have extremely high allergies for NSAIDS, all the grasses and trees, cats, mold, house dust and about 40 other things.  Its not fun being allergic to everything or just about everything.  In any case, I started going every three days and things weren't so bad except it took about 9 months of shots just to catch up to where the regular patient would start out at. I couldn't even mix them until I started the regular dose and even then it was hard because there were times that I had gotten hives from mixing and we had to go backwards and reduce the shot dosage.

During this time I was still sick a lot, Upper respiratory infection, bronchitis, and pneumonia a few times and lets not forget the asthma attacks.  Ugh, I just couldn't take it.  Sick of being sick.  Again don't forget this was all the Gastro's idea to begin with because of the stomach issues, but I have to say, the stomach was feeling better, so just maybe this was helping.

In the meantime, I did have some sonograms of my kidneys and other organs.  I was told ironically that within a few years I might pass a few stones, but not to worry now.  Ok, what did that mean, years?  My arteries were good no DVT, deep vein thrombophlebitis, but still the superficial thrombophlebitis and as for the pains they recommended another specialist, a Rheumatologist.  The allergist also recommended that I see a Hematologist with the levels being so high and the veins blowing out.  Ok, whatever I need to do all I know is that I still feel like crap, I get sick all the time and I can't take it.  It really is just getting ridiculous.

Off to the Rheumatologist I go and I tell him how I feel, like I'm wearing concrete shoes and my joints hurt like I have the flu.  I get fevers on and off for no reason and usually (I know my body) I have a low temperature, like 96.8 or 97 at most.  So when my body temp is at 99+ I'm not good I need Tylenol and don't come near me if its over 100, forget it I have to have something catchy.  I tell him there are some days I'm holding something in my left hand and it just falls out.  My feet go numb, all these weird things. I sleep during the day and can't sleep at night like my body clock won't adjust.  Can he help me.  I told him I had been to several doctors before him and please help me.  He checks me out and then talks to me.   He tells me I have Chronic Fatigue Syndrome and was tested positive for Rheumatoid Arthritis and Lupus but in his opinion the RA and Lupus were more than likely negative.  What?!.  Really and how in his expert opinion is that?  I went to him for an answer and asked about being put out of work because I was in no condition at all to work and he told me I was too young and there was no way he was signing any papers, but he could refer me do another doctor that could help me.

I had to request my medical records and I read them.  It stated on them that he diagnosed me with Anxiety. Well of course I have it, I've been to a lot of doctors and no one can seem to tell me what the heck is going on with my body.  I mean really, come on now.  I want answers not guesses and doctors who have definitive answers who tell me they are incorrect.

I go to this other doctor whom he referred me to and gee to my surprise its another Rheumatologist.  Very nice doctor.  I read the referral letter, almost like he downed me in the letter.  I was a much interesting case.  Come to find out I not only have CFS, but carpal tunnel in both hands.  I know this and gee he didn't see any anxiety.  I have no idea what is with some doctors today, but why half of them are still practicing is beyond me.  He gave me some medicine to help but of course it didn't even the several times we changed it.  My body just downright aches all the time well summer is best.

I then go to the Hematologist and she does toms of blood-work to try and find causes of my veins popping and such.  Nothing.  What the heck.  My vitamin B low and that was about it and a few other things that we can take care of quickly, but I am borderline diabetic and she tells me that I am overweight.  At this time I was 142.  It was 2003 and I told her I had been sick and lost some weight and for some reason I just started gaining it back.  I really didn't overeat or eat bad.  I was 127 about 6 months after gave birth in 1995 to my second child, then gained maybe 10 pounds and recently was sick from that pizza incident and lost just about all of it. So I was maybe 130 in 2002 until the beginning of 2003.  I started gaining back then.  Well she decided I needed to go on this 1200 calorie diet.  I'm only 5 2 1/2.  Ok, so I did.  Much to my surprise I was only eating about 900-1000 a day already.  What the heck.  I had to come back once a month and have blood drawn to check for all sorts of stuff and have B-12 shots because it was really low.  It the meantime I was having the immunotherapy still and the Rheumatologist and Gastro.  Long list of doctors.  Now my Hematologist wants me to go see an Endocrinologist.  I'm getting dizzy just thinking about all the doctors I have and now start keeping binders of all my doctors, which I still have of, course.

I go see and Endo and the of course they take blood and weigh me.  I am now 147.  This was only about 2 weeks since I was last weighed.  Something is happening.  I barely eat and I am still gaining like mad.  How much blood does one person have and how do you gain weight without eating?  I mean, wow, I give blood all the time.  I feel like a human pin cushion.  Well my levels are off and he sends me for a sonogram because he feels something on my thyroid.  I go a few days later and have a sonogram done.  This was painless and easy, phew!  I go back and talk to the doctor and I have a small nodule on my thyroid.  I am finally getting some answers.  I need some thyroid medicine.  I have hypothyroidism and this is why I am gaining weight.  Hooray another not my fault!.  I start the medicine at a low dose, this is how you have to start. Damn, can't you just start according to a chart or something better than trial until it works. Oh gosh I hate waiting.  Again with the by the way you are borderline diabetic as per your blood-work.  So now they want me to do the 4 hour glucose testing.  Ugh!  Ok, whatever.  What more could it be.  Let's just add more stuff.  I am a mess now.  That comes and goes and I am negative, hooray.  But I must make sure my diet is strict.  What diet?  I barely eat.  I told them.  I have a bazillion allergies and can't eat just about everything.  I gain weight for no reason until we just found out now.  So you tell me.  What can I eat?

What does a person who is allergic to soy, wheat, beef, lamb, eggs, milk, carrots, garlic, mushrooms, peppers, corn and a handful of other things eat when they are borderline diabetic and get back to me.  I mean really I try my best to not be sick first.  Then eat the best second.  Its not easy.  I lived on iced tea, fresh real and salad for a long time.

I took a long time to get my levels even, actually just last year I thing they finally got under control because they all changed again after the surgery.

Its getting long and I will have more later.  To be cont'd.

Blah blah blah

So I just got off the phone with my ex and he chewed my ear for about an hour.  I think I heard hi, how are you things like that then blah blah blah.  Not that I wasn't listening to him its just that after the first 20-30 minutes I was fine then it seemed like I was his therapist again.  I know I shouldn't think that way, but it really did feel that way up until the part where he wanted to reminisce about our entire marriage or should I say life together.

It started with just before the time we got married into when I was pregnant with our first and second daughters then when our youngest was colic and we had to put her on the dryer just to stop her from crying all day and night. Boy do I remember that one!  It then progressed into when he threw his back out next thing you know all I heard was the blah blah blah part.  It was almost as if I wasn't there.  I swear thats all I heard.

I guess a few minutes went by and I heard him say I really wish you were more religious during our marriage.  WHAT!, I said.  Now that I heard.  I had to come back with something after all I didn't get a word in the entire time.  Ok now I got a little frustrated with him and told him he really needed to stop preaching to me.  I don't go to church, but I do believe in God.  Should I go, probably, but I don't.  It doesn't make me a bad person.  But I asked him, "How many times during the course of our marriage did you go to church?" Dead silence on the other end.  I asked again and he said well I went about 3 weeks ago.  I was like, I didn't ask you that.  I asked him how many times while we were married.  He again well over the last year, blah blah blah.  Ok, hold it right there!  I said now stop the crap, none I said don't even start your preaching to me now that you think just because you go on a not so weekly basis.  He told me he has gone about 5 times in the last year.  I told him that was great and maybe he should go more often.

He proceeded to tell me how right I was about trying to tell me I wasn't religious and it didn't matter if I went to church or not and that he never went until this past year, blah blah blah.  WAIT!, I said.  Did he just say I was right, twice in one day, wow, I can't believe it.  I am going to mark this occasion down on the calendar in Sharpie marker.

That segment came and went and then he went back to the divorce and about how he could have done things different.  Well of course he could have, but he didn't so why linger on the past.  Just move forward, please.  There are some days that I just can't take the phone callas and other days where I am fine. I guess today, well it was one of those days where I just wanted to say I get it, yup, uh huh, yeah, I understand and most of all, blah blah blah.

How do you sleep?

There are so many ways you can actually sleep.  I mean on your side, either one or your back or your stomach.  Then with that in mind you can sleep all curled up in a ball or spread out all over your bed.  Last night, well forget it, I didn't even get under my covers.  I went and got one of my mom's hand crocheted blanked she made me and just put it over me and thats how I slept on my back then woke up on my stomach.

I usually sleep on my side but for some reason yesterday was different.  I wasn't feeling to good, by back was killing me and my neck so I was just laying in bed trying to rest got the chills and fell asleep.  I hat it when that happens because I feel as if I didn't sleep at all.  A restless nights sleep.  I love to be snuggled and warm when I sleep, but comfortable.  Not too hot, but too cold forget it.  I always have to have my ceiling fan on.  I think that is just a mind thing now.

When I was still married my ex used to crack the window every night and it drove me nuts because I slept on the window side of the bed.  He didn't get the full effect of the below freezing air coming in in the dead middle of winter, I did.  I would have to sleep in sweat pants and a sweat shirt with 2 blankets and I would still freeze.  He snored and I mean loud.  It didn't matter what I did, he was loud.  It drove me nuts.  The worst part was that he swore he didn't snore.  I had to tape record him to make him believe me.  He tried everything to stop but nothing worked.

  Now that we aren't together ( I hear the angels singing above me, ahhhhh) I sleep however, but no window cracked and I sleep wonderfully.  It's simply amazing. One thing I still do is have the ceiling fan on.  I wonder if it was the sound I use to drown out his snoring before.  I do have tinnitus and the noise of the ceiling fan helps, so that could be it.  I always keep music or a TV on for that reason, background noise.

Anyway, last night I fell asleep on my back, woke up on my stomach and have an aching tailbone today along with my neck.  If you have read my blog you will know I have Arnold Chiari Malformation which  affects how I am everyday, but ouch today, big-time and it sucks because its a nice day out.  Not that I was going jogging, ever LMAO! That would for sure make my brain feel like it was rattling around or loosening up for sure.  I can't imagine a really great nights sleep, I don't ever think I had one.  I know it must be grand.  No, wait!  I did have one, but I can't consider that sleep.  In November 05' when I had my brain surgery and I was under anesthesia for like 12 hours I was in ICU for 6 days then the regular ward then they sent me home.  When I got home no one was poking or prodding me for blood tests or anything and I can remember laying down to sleep because I was just so tired.  I did sleep, not for a long time, but I remember it being restful, peaceful, so if that is any inclination of what a great nights sleep is I want it one day.

Well maybe there should be a medicine that has anesthesia medication in it for sleeping because it worked all except I don't remember a damn thing.  Then again it was brain surgery.  Oh heck, all I want is a good nights sleep say 3 times a week.  I sleep ok, but not really good.  How do you sleep?

Happy Birthday!!

Today is my daughter's birthday! Happy birthday!  Sweet 16.  Need I say more?

This isn't her cake, but it looks great huh?  Last year we had an Alice in Wonderland Theme Birthday Party.

This is me, yes all hand made and I did my own make-up.  I was the Queen of Hearts (off with your head, lol)  I love dressing up, I mean who doesn't!

Jordan, one or her bff's

Douglas, Amber, Sam and MaryAnne

Vicki and bad me, I forgot her name, it will come to me and I will replace this one day.

( I can't find the rest of the pictures, hmm. Krislyn was Alice and we had about 4 Cheshire Cats there)


 This year I have no clue what she wants to do.  Her birthday is here and she mentioned going into the city to go shopping with some friends...is she insane, that could put me in the poor house.  How about cupcakes and some Diet Coke.  Well whatever it is its going to be small and inexpensive.

I just know that we have so much fun when we have her birthdays and every year we never know what the weather is going to do because, of course, it's April in New York.

Thinking

How many times a year or month or for some people a day do you find yourself just sitting around thinking.  Thinking about absolutely nothing.  Some people may call it daydreaming and others may call it just being distracted but whatever it may be called to me its thinking.

It can begin with a blank stare and end in a whirlwind of crazy thoughts depending on the day of course.  When I was little I used to hum, sing and talk a lot.  I still talk a lot and if you know me you will agree ( hey be quiet, stop laughing I know who you are and where you live).  I did a lot of thinking is what it was. I would think about what I wanted to do, be, write, sing and design, just about everything.  It was like a million things all the time I loved it.  I was busy, on the move and always loved to have something to do or build.  Of course I had to think about it first and hum or sing while this was happening, but usually hum.

My best friend and I would go in the woods and build tree forts and hang out all day or go for long bike rides until it got dark.  I would come home and then write a story about it, but adding something creative to it.  When winter came we would go ice skating or sleigh riding.  I loved the neighborhood we grew up in everyone hung around together and we all played together for the most part.  Football, baseball hide and seek (not the usual one, I'm talking 3-4 peoples yards worth).  It was great.  Anything you could think of.

We would try to think of new things to do all the time.  Some of them would get us in trouble, like the time it was so hot during the summer and we didn't have a pool, so we filled up a cooler and put out feet in it. Oh boy did we get in trouble for that.  Well it kept the water cold, but my mom didn't think it was a good idea when she got home.  I love thinking of new ideas, but this one, not so good.  Of course Carol got sent home and I got sent to my room for that one.  I got told to sit and think about what I did.  I love thinking.  I did, like I said I thought it was a good idea and that didn't go over so well.  I also thought we should get a pool so I didn't have to do crazy things like that anymore. I knew that would never happen, we weren't rich or even a middle-income family so use the hose and at a limited usage was about it or go to the local lake when we had permission.

I could think of much better things to do, but again some of would get me in trouble, so enough of that so I just did what I was told and stayed out of trouble the best I could.  I mean who wouldn't want to ride their bikes all the way to the really nice gigantic swimming pool for the day?  Of course if we did and the young age we were we would get grounded until eternity because it was about 8 miles or so away.  So we just stayed close to home and thought about how nice it would be instead.

Now that I am older I still love to think of all the things I did when I was young and the things I can do as an adult.  I don't do anything too crazy.  I am creative and fun and I love to think.

Thinking just keeps your mind active and lets you imagine what you could do if you truly wanted to.  Be real and not crazy and make sure you are true to yourself but also be imaginative and creative this was you continue to use you great mind that you have.        

Only 2 more days.

I just can't believe my baby turns 16 in two days.  I never saw this happening.  I mean I always knew the day would come, but I just never knew how fast it would be here.  It just seemed like yesterday that her and Amber wanted to go to Chuckie Cheese's and have pizza and play games.

This cake I made for her when she was 8.  It was her swimming pool party made of Teddy grahams  with frosting on them and blueberry Jell-O, chicklets, the jelly orange candy, fruit stripe gum and the only un-edible thing was the Lego lounge chair.  It took me a while to make this but it was so good.  The reason for the pool party cake was because you never know the weather in April in NY, so we just decided to have an indoor pool party.

Now that she's turning 16 she's like wow mom, we can go and take my permit test on Tuesday right?  Uh, ok?!? I think so, yeah, sure, of course you can.  She has been studying I will let her of course, but I will also make her take driving lessons.  It does help kids learn, or teenagers I should say learn.  It really does.  Respect is a huge thing driving.  Respect your car, other drivers, the animals that just want to run out in front of you, emergency vehicles, the road, the weather, just everything.

                                  (this is a few years old, but I lust loved this picture)


Well I'm not sure if this is the beginning of the end or the end of the beginning.  I know, both.  It's the beginning of her move into adulthood and the end of her well maybe depending on me so much.  Nah, she will still need me :)  just as much as I need her and her sister.  16, to be 16 again, nope I'm good right where I am.  I just can't believe it two more days.

Alone

I'm not sure how many people have been in the same situation as me, but have you ever felt alone?  I'm sure you have at one point in your life.  I mean really alone.  In the same room with a lot of people having a great time, yet feel like you're all alone.  If you have read my previous blog on my medical conditions then you will know some things about me and that I have Arnold Chiari Malformation.  Look at me, well I know you can't.  I mean take a look at my picture.  I don't look sick or like I have anything wrong from the picture.  It's really annoying some days, because that makes me feel alone.  I can honestly say that I feel like crap daily.  Each day is just a different level of how bad I feel.  Some days I get up and do nothing and I mean nothing.  I'm lucky I remember to take my medicine the bazillion I'm on.  Other days I get up and I want to do the dishes or laundry or anything I can just to feel useful.  Woo, lets go to the mall, go shopping something.  Oh boy, for most women, that is an awesome thing.  Oh don't get me wrong.  I love to shop.  Its the walking for a long time that I can do without or the sitting or the long day.  Its the whole thing all together.  I have to save all my energy from the entire week just to go shopping with my kids one afternoon, because I will be home sleep extra and hurt more, be tired and be so worn out the next day.  It takes me 2-3 days to recover just from shopping it drives me insane.  So I don't do it.  And remember Arnold Chiari Malformation is only one of the many illness I have.

Trying to accomplish regular tasks at home is forget it.  Overexerting myself is just about everything I do and I pay for it the next few days.  I will go out and dance with my friends, but I take Tylenol before going because I have to on top of everything else and again I am just sitting or lying in bed for the next 2 days because I am in pain.  I am throbbing, My neck and head is built up with so much pressure it feels like I was ran over by a truck.  I feel so alone, why did this happen to me?  Some days I wish that everyone could just experience this for a month, not a day, a month.  Then maybe when people look at me and say, "you look great, you seem fine".  Yeah, ok.  I wish I only felt half as good as I look then at least i could do so much more.  I feel useless some days, alone, confined.  Other days I feel as if I were given life another chance and something precious like a gift.

I don't have any mental issues, yeah anxiety, who wouldn't with all the medical problems I have, but thats it.  I'm not depressed or anything like that.  I just need to vent thats why I made this blog and I want to get my thoughts and stories about my life out.  Maybe it will help someone, somewhere.  I am a strong woman, independent for which my mother taught me to be and I am grateful to have such a wonderful mother.  I have two awesome sisters and a great brother too and for that again I am truly thankful.  My 2 gorgeous daughters and 3 pain in the butt dogs (aren't they all) fill my life with joy and make me part of the woman that I am.  But having so many illnesses I always will feel so alone like I was hand-picked to endure all this pain and continue my life this way.  Alone in the sense that there is no one like me and not alone in the sense that I have no one around me.

This is why I know there are many people who feel they are alone in a crowd, but just remember you're not alone, but you are one.  One special person, just like me.

Customer Service???

Customer Service...hmmm.  This one could go either way it seems lately.  For instance, you have an issue with let's say the bank and you call to try and clear it up.  Who do you call? Customer service.  You need to return an item to the department store because you don't like it or it fit differently.  Where do you have to go to return it?  Customer Service.  Now, here's the trick question.  What happens when you're late a few days on payment for your credit card?  Who do you call?  Customer service, right? Yes, but that usually turns into collections.  What the heck.  I am a great payer and have very good credit.  Why is it that when you need service as a customer and you really have an issue that needs to be resolved there are so many rude, obnoxious and just down right nasty customer service agents (people or whatever the term is these days) answering the phone?

I called my credit card company the other day, I will leave their name out of it, because they have been good to me, or so I thought, over the years and I asked why my interest rate went from  16.99% to 30.24%.  I know even the 16.99% was high, but I have had them for many years and I really had no balance on the card.  The Customer Service Rep. on the phone tells me that due to blah blah blah, and blah blah blah that every one of their card holders interest rates were increased.  Really?  Well thats news to me.  I know a few friends who have one and theirs isn't.  I ask nicely (no really I was nice) if there was any way to have my rate lowered because I was very good paying customer and a cardholder for so long.  He just flat-out was like no ma-am.  What the hell.  Why not?  Well this was a bank decision for all cardholders blah blah blah for the increase in the rate.  I must have tried to haggle for 10 minutes.  I can usually get something haggling.  I was getting really frustrated now.  15 years at least I have had this card, never late always overpay, what is the issue?  Where is the customer service when you need it?

I want a manager.  So on goes the call and a manager I really am mad, 30.24%.  This is no picnic and the interest is nuts.  I explain everything over and this Customer Service Manager says the same thing as if they were reading a screen.  Gee, a script???  Ok, I get it I told her I finally told her that your company really don't want my time, business or money.  I will be paying off my card that has what, $1500 on it in full of course and you will be losing all my interest from now until forever and I will be closing my account and you won't get my extra say $900 in interest plus whatever I could have charged over the next what 3-4 years to pay it off.  So in all actuality you will be losing a whole lot more.  Me on the other hand I am gaining a whole respect for the word Customer Service, because your company has none and the word should be removed from the employee handbook as well as from any memos within your company at all.  Please feel free to shred all of my information except where you have to retain it as by what the law tells you to.  I went on to tell her that there was no service in there Customer Service as well as being no customer in their Customer Service.

I had silence on the other end of the phone for a few seconds and then finally heard well I'm sorry you feel this way.  OMG!, Are we reading the screen again.  I chuckled just enough so she could hear me and said oh sure you are, but it's ok, I understand (their second favorite line, I couldn't resist).  Then of course she asks me the good old stand by, is there anything else I can help you with today? Well, maybe my laundry or dishes, what do you think, really?  Uh, no, I think we're done here.  I hope as of today my check cleared, you know how long that takes, they want to suck every days interest out of you this way they get more.  It's been about 5-6 days now and I really don't want to have to call back customer service.

No joke

The papers have been served, no joke.  The divorce shall finally be final and hopefully by the end of the month.  Wow, I still can't believe it.  Of all days today, All Fool's Day A/K/A April Fools Day.  I love it.  He's not a fool.  He was a good dad when he was around and a great provider.  I know deep in his heart he would have never let anything bad ever happen to us no will he ever, but once you cross that line, yeah you know which one I am talking about, there is no turning back.  I could have never trusted him again, even if I wanted to.  It was at the point to where I couldn't even stand the smell of his breath when he came close to me.  

I will always have a place for him in my heart and will be his friend forever.  After all he is the father of my children and I did fall in love with him at one point in my life, but for me I am a survivor and always have been and always will be, no doubt about that.

Love is a funny thing it is.  How do you know its there, you just do, how do you know its gone, you just know.  Its not knowing if your in love mind, body and soul.  Its knowing that you love your mind body and soul enough to to give your love away to someone and they in turn are willing to do the same without knowing why, you just do. Now thats love. No joke.

Arnold Chiari Malformation and medical issues

Arnold Chiari Malformation or ACM.  This is what I have.  I posted this before.  I wanted to go into a little more detail about it.  So here it goes.  I was sick and still am, it's like a diamond, it's forever.  I'm talking weird sick.  Not your everyday cold symptoms stuff.  This was different.  When I was in a car accident back in 1987 and smashed my head on the hard chrome metal seat belt buckle holder and passenger window.  Cut it open bad and I remember holding my head because it instantly hurt.  I felt something cold running down my right hand.  It was blood.  I had a concussion and whiplash and something else happened to my neck, I don't remember what they called it and a back injury.

I remember hearing an ambulance and next thing I remember was opening my eyes and being in the ambulance then I blinked and I was in the ER.  It was all in a flash.  I then remember the doctor saying he had to give me a few stitches if it was ok.  All I can recall was that he said maybe 4 or 5 of them.  Yeah right.  I know that there are at least 7 in the initial scar I have that is still tender  to the touch after 24 years.

They took x-rays, not that I recall at all, but that I have records of all of them.  Anyway I have had nothing but migraines since the instant of impact.  From that moment on weird and unusual things happened slowly, but the migraines always stayed.  They went from mild to massive and short spurts to long drawn out days.  I feel terrible for anyone who has one because I know what you go through.  I have actually met people who have never had a headache (I bow before you), lucky you!!!  I get them daily and only the intensity changes.  I can mostly ignore them because I have had them so long, but not the migraines.

Now for the weirdness.  The first few things that ever happened I just wrote off as flukes due to the fact that maybe I had a beer or it was really nothing and I was just imagining things.  When I came home from the military and the migraines didn't stop from the medicine I was on then I went to chiropractors.  Well that didn't help.  I went all the time.  I would feel better when I left until about 10 minutes down the road.  It was not even worth the drive anymore, but I continued to go because nothing else seemed to relieve the pain.  I had numbness and pins & needles in my arms and legs on occasion that I can remember.  I would get nausea and want to just sleep all the time.  On several occasions I would have to pull over driving because I can remember getting or seeing these halos or what people call auras and I would black-out.  I didn't even know that was happening to me.  I only knew once or twice that it happened and that was only because I didn't recall the drive in between my to and from where I was going.  I would consider that weird.  Not knowing how you got from point A to point B.  It was beginning to get scary.  I called a Neurologist.  They get me in and did some testing.  I had these tabs glued to my head and electric shock or something were sent to it and recorded.  I don't recall the entire test, but I can remember the goo in my hair.  Yup, migraines the doctor said and gave me some other medicine.  Well no friggin way!  (chuckle here)  Of course they are, thats what I was there for.  Now I'm  sure something else can be done, but I wasn't the doctor and I was young so I went along with whatever I was told.

I felt a little better with new medicine, but still tired, sleepy all the time.  Back hurt, head felt heavy at times like I had to lay down.  This would pass and I would just ignore these things and move on.  My knee would start to hurt like I was an old lady.  I mean like 80 years old and ran a marathon.  Then there were days that I felt like I had on concrete boots and gloves.  It was driving me nuts.  Next my eyes.  My vision would go from normal to blurry to halos around lighted objects to double vision constantly.

As the years went by I just dealt with the pain and new issues popping up, but kept going to doctors.  I kept having different issues come up like my hands going numb, just 2 or 3 fingers at a time on a hand at different times, then go away.  I would have pain in different parts of my body in the joints usually and feel like I had the flu without the vomiting.  This was all the time and only got worse over time.  I was taking a shower one afternoon.  I couldn't take hot showers because they feel extra hot on my shin.  Well I'm in the shower a little warm the water is and my feet turn bright red and almost blue.  What the heck!  I get out and dry off.  I take pictures of my feet because no one will believe me.

 One afternoon my mom was at my house visiting and I was just walking through my den area and we both heard a big "pop"  I had to sit down immediately because the popping sound came from my right knee.  I popped a vein.  Well this was new.  It instantly became bright red and spread out over my knee cap.  It was hot to the touch and my knee hurt it I put pressure on my leg standing on it.  Off to the doctor I went.  I was told I just "blew out" a superficial vein.  It was an inflammation it will go down and they put me on an antibiotic because of the size of it.  It completely covered my knee.  Oh, and if it happens again come back.  Not long after that it happened again.  It may have only been a few weeks later, but this time it was my left leg down my by ankle and it was so bad I was limping and could barely walk.  My leg was swollen and I thought it was a spider bite, but no marks and you could see exactly where the vein popped.

The doctor decided to do a Doppler sonogram on me this time to make sure I didn't have DVT (deep vein thrombophlebitis).  Negative for that, but I do have Superficial Thrombophlebitis, which just sucks. I can be walking and "pop"  what pain sometimes.  Be in fact it just happened the other night.  I woke up to it in my knee.  I get it in my hands too, but more in my knees down.  It hasn't been as bad as before the brain surgery but I still get it every few weeks.

Time goes on and the normal or what I call normal issues happening to me now, migraines, popping knees, joint pain, double vision, blurry eyes come and go, numbness in limbs (occasionally) pins and needles sometimes.  Now for most people they would not consider this normal, but I live with this everyday so anything above this I would consider this not normal.  You with me so far.  

My kids are young just in school and I'm working my butt off to help pay bills.  I just put myself on the back burner because Krislyn is Autistic and she is much more important than me migraines and pain or not.  Amber is 2 years older and and also needs me, not as much because she isn't a special needs child, but nonetheless she is a child and needs her mom.

Now I continue working, taking care of my home, kids, bills, husband, animals and myself the best I can then I get more symptoms.  One day I'm at my job and we get pizza for lunch.  I have a slice and I get viscously ill.  I mean instantly.  I go to the Urgent Care and tell then what happened.  Pain, cramps and it feels like my insides are hard and sticking out.  They do massive testing of all my organs and blood tests.  I have an infection somewhere and they tell me I have a kidney stones that will eventually come out but probably not for years.  Ok, but what is wrong?  They have no idea its not food poisoning no one else was sick and all my organs seem fine.  I get antibiotics and nothing still pain, discomfort and sick to my stomach.  I lose like 25 pounds in 2 months and no reason why.  They do more blood testing and find nothing.  One more round of antibiotics and poof the pain is gone and I feel fine like nothing happened.

Things come and go and in between everything else I get bronchitis and upper respiratory infection all the time during this.  I mean like 5-6 times a year.  Its crazy how often I get sick.  One day I can go and eat whatever and be fine the next day I can't stay out of the bathroom.  A few more years go by and I have to say I am not one to ever get a cold.  When I get sick I go all out.  Flu, bronchitis, Upper respiratory the list goes on and on.

One day I have some cramps and just done feel good.  My husband wants to go hiking with the kids and I just want to stay home so he goes.  I now have blood streaked mucus in my stool and I have diarrhea or I can't go for 3 days at a time.  What the heck is going on here.  So off to another doctor I go.  Ok, I may not eat the best, but I eat.  I go to the Gastroenterologist to be checked out.  They tell me to keep a calendar of my pain and eating.  Ok, here we go.  I think its the fact hat I was so young and I was.  We tried everything for the stomach and nothing worked.  I would go back and forth and have gas and bloating and some blood and discomfort.  I was also there because of the stomach issues from the pizza incident prior.  So maybe something was connecting, who knows or was it all in my head.  Endoscopy it is.  I have this done and the doctor tells me it was beautiful.  Well that made my day.  I was beautiful on the inside and I have the picture to prove it!!  Now what? Oh joy, I know what's next, endoscopy, oh poo! lmao!  Sorry I couldn't resist.  Well that gets done and they find some polyps.  Damn, ok remove them and biopsy them.

In the meantime, I'm at home freaking out.  I have blood in my stool, lost a ton of weight getting sick, nothing else happening and what's the first thing that comes to my mind, yup, you guessed it, the "c" word cancer.  Oh did I have a breakdown.  I cried for 3 days until the biopsy came back.  BUT, they called me to tell me it was inconclusive.  So now I have to wait another week to be resent out to be micro-biopsied.  It came back that I have micro-colitis which still is not fun to deal with, but better than cancer in any way.  I had to go back in a year for another one then if clean every 3 years.  Now that is good I felt better.

Six months come and go and I feel like crap and I still go to the Gastro and he suggests that I get allergy tested with all my symptoms.  I agree so off to an allergist I go.  I go into the doctors office and the first thing I do is sneeze, ironic I know, but true.  Someone has this perfume on that is just killing my eyes.  I mean I always knew certain things would bother me, but why on the world would you go into the allergist wearing perfume?  I meet the doctor, she's so nice and we have a nice long talk about how often I get sick.  Oh my.  She just takes it all in taking notes and I go on and on.  She then does and exam and starts to talk.  She tells me that with all that I have told her like me knowing my dust and sever cat allergies and the fact that I get respiratory infections a lot we should do blood testing rather than skin testing and she wanted to do patch testing for skin (I think thats what they're called) allergies.  Ok, maybe this will be the root of all my issues with the migraines and other stuff too.  There was another reason I was there too.  I would be eating Chinese or Polynesian food, which I love and I would break out in hives.  I would drink an unsweetened iced tea with real lemon and get hives.  Just get them for no reason. So testing confirms so many things.  Allergic to everything and I mean everything. 42-45 out of like 47 items tested.  The thing is I have a really elevated IgE level.  I was told by the doctor that having asthma you would have an increased level, but I wasn't diagnosed with asthma at this time.  My IgE level was just over 3000, 3060 to be exact.  Normal being between 0-120.  Well then,  My life just gets better all the time.  The didn't believe it so they took blood again and the same thing.  It was the same.  With that being seen my doctor started me on immunotherapy shots to help my allergies.  This helped us realize what was making all the hives just pop up for no reason.  I had so many level 5 and 6 even allergies 6 being over the top.  Cats, dust, all the grasses, trees, mold, soy, shellfish, wheat, milk, egg, corn, yes corn, and meats well all but chicken.  Even rice was on the low end of the chart, but with my IgE being so high it makes the low end allergies react like someone with high allergies.

Next for the patch testing.  It's called RAST testing.  I don't know which is worse, needles, which I am actually fine with or an itch that just never goes away (if you're allergic).  This is an adhesive strip that has little dots of all the things you could be allergic to on it attached to you skin for 2-3 days.  Of course its in the middle of your back so you really can't scratch it.  Not that you're supposed to anyway.  The second she put it on I was going nuts.  I asked the doctor oh, can you just itch right there, oh right there.  It was comical to say the least.  I came back in and well, more allergies, was I surprised, nope.  Latex, black rubber and adhesives.  Well that explained a lot more.  I always remembered Band-Aids leaving marks even if they were on for just a few minutes and giving blood forget it.  They would have gloves on and use the band around my arm.  I would turn bright red and itch then the mark would stay there for the longest time. The nurse or whoever took it would just tell me it was from being so tight on my arm.  I always knew, but it was never confirmed, until now.  Boy, do things really make sense!  Onward with the immunotherapy shots we go.  Ha, now this will be fun!
To be cont'd.