luckypickle's Blog

A note to friends past and present

Where to start.......

I'm finding it very hard to keep up a tough front, and to be quite honest I hate showing the weak side of myself. I hide, do I fake a smile, or do open myself to all the shit people on this site have thrown my way?

Those who are close know what's going on at home, and yes I did sugar coat it. But no more. Dil has been having tantrums where he smashes head hands on his head or digs at his scalp, then breaks down and cries. Or he spends hours just picking at his hands and legs. He has so many deep sores on his body that it hurts to take a bath. That's when I can actually get him to take one.

Please do NOT give me the stand by shit of 'oh you're the mom, be the boss'. Fuck that and fuck you, you have NO idea what this is like unless you have been in my shoes.

I just want my little boy back. I want to be able to take him somewhere and not have to hide in a quiet isle and rub his back until he calms down enough to stop pulling his hair. I want to not have to make him take meds daily just so he can function mentally and physically. I want to be a normal parent and FINALLY have that deep sigh of relief. I want him to know what it's like to be able to potty, be around people, not want to pick himself.....just be a happy healthy little boy. Is that so much to ask?

Right now I'm debating putting my account on vacation and disappearing. Or actually making myself come on a couple times a week to unload. I'm so lost right now.....

Yeah I'm alive

But I'm sick as hell. My throat is killing meh, my left ear apparently had an abcess (sp?) in the ear canal and it burst...nice now I have pus draining from mah ear.

My eyes itch mah nose is stuffily, *sneezes n coughs*. I am nausous...very much so.

My RA is flaring and my hands are killing meh. The fevers are giving me a headache.

To top all that off Dil is sick too. Woot.....I can't afford to see a doc right now.

Love you guys...hope to be back on soonish. Mwahz

Just can't get into this.

Sorry if I have messages that I haven't answered. I am not in the mood. I tried to be. But nope. Not gonna work today. So...goodbye for the moment. Mwahz.

EEG results are in.

I'm not sure if I'm relieved or disappointed. Doesn't seem to be seizures.

Relief is that seizures can cause brain damage. Disappointment....then it's much more likely to be tourettes. *takes deep breath*

I can deal with this. I have to deal with this. I've dealt with alot and I WILL NOT GIVE UP on him. Never. We'll just get the home school ball rolling next year.

No...I will NOT send my boy to school in diapers while twitching and have him deal with being picked on and put down. Kids are cruel even at that age.

Next stop neuro wise, April 11 appt.


Had to keep my lil man up most the night AND wake him up extra early. All in hopes that sedation won't be needed to put those "things" on his head. Ever hear when they put the sensors on someones head for EEGs? It's LOUD!!! He was nearly comatose for the first one and still just a baby for the second (done in ACH) so I KNOW he will fight it this time.

So...I'm exhausted, cranky, really should brush my hair but feel lazy, and trying to keep him awake.

Two hours sleep sucks at the best of times. Today it just blows. Teehee I made a pervy funny. :)
(yeah yeah that was lame, bite me)

I'll be leaving home at 8am (45 mins) and not sure when I'll be back home. If I don't have the chance to get back online this week I HOPE to be back next week. Loves ya.

Wazzup? Well here goes.....

Got net back earlier this month. Sorry I haven't been on. Things are.....rough......

Dils next appt is on Feb 28 @ 9:15. GI in ACH. But earlier than that, he has to go in for an EEG this thursday in the local hospital. Why you may ask? Because he has tics. I think. Either that or he has been having seizures several times a day. Doc said it is either his seizures getting worse. Or MORE likely.....he has tourettes.


It kills me to see him like this. His eyes squint. His mouth clenches. His neck flips around. He makes funny noises. Then says it hurts. He hurts and I have no idea how to help him.

So......he is also set up to see neurology in ACH.

Then somewhere in there is his testing in urology (also ACH).

How can one little boy have so many issues and not one damn person can tell me why???????????????????????????

Hopefully not a booze induced over emotional post.

So Friday Dil had his test. Just an ultrasound. It was the same woman who did the last one. No change. And even the nurse is pissed that nobody can figure this out. So now next week we go to Jonesboro to see the urologist there. *sighs*

Update on all of his...issues: Seizures he seems to have grown out of but neurologist is still worried about (diastat for emergencies), hypocalcemia, hypomagnesemia, low sodium (was on suppliments). Shortly after being taken off his suppliments he started having bowel issues. This was about at 14 months old. Put on miralax. Worked for a while. Urinary problems started. Has not gone for 25 hours in a stretch. Constant UTIs. Bowel issues worse. Put on mylanta and profolactic bactrim to help with stool and UTIs. Still gets infections but not as often.

Since day one every single blood test has shown many tear drop shaped RBC and macrocytosis.

Heart murmur in odd spot.

Weak nails and popping joints. Started "intoeing" and trips constantly.  blinks much more than usual.

Random platelette count spikes and dehydration. Slow growth. Weightloss. Lack of appetite when he can't void or stool (duh)

Nothing physical can be seen other than pointed ears. An ALMOST simian (sp??) line. High arched pallete. Microarray analysis came back normal. Geneticist said he would keep file open. Perhaps in a few years we'll know.

As for far at least three definite miscarriages. Worst was twins at 17 weeks with need of D&E. Now fucked up hormones, fibroid tumours in my breasts, constant ovarian cysts, premamature greying, late or missing cycles. Doc wants a total hystorectomy. Not ready.

Any clues? Anyone anywhere???????

Antisocial me.

The past few days I have ignored my texts, havent' check my mail, and just wanted to hide under a rock. I don't know why and it has NOTHING to do with anyone. I get like this sometime. I am fine, nothing is wrong besides my fucked up head. I can't seem to pull myself up and really am not even sure if I want to. I'm sorry.

Random thoughts.

Calling for more snow. Then back up to 60s. My plants are so confused. I don't think I'll have roses til summer at this rate.

Today has been an OUCH day. I hate my meds. But I hate feeling helpless even more. I find myself crying about stupid things. Not out of pain...just frustration. Like getting into the ketchup bottle. Or opening up spaghetti O's for Dil. Yeah I'm a whiner. Sue me.

We got new neighbours across the way. More dogs for the area. One of them is a yappy fucker. Then again I'd like mine to bark MORE. The propane guy came out to fill us up and not a one barked. Even when he came to the door. For all they knew he could have a bomb. My birds are better watch dogs. To make matters worse my pit bull Keeker brought the guy a teddy bear. And it was a new worker!

Dil isn't as gassy as before. He hasn't been urinating until about 4pm every day. That puts him at around 17 hours between voids. Then he goes again in the tub. It helps alot. I hate his feet swelling. I worry about what all that swelling will do to his murmur.

Tonight I got tunnel vision and was sure I was going to pass out. I ate. But I could tell my blood sugar was low. Yay apple sauce.

Hm...on another note a complete stranger sent me a love gesture. I couldn't find the stupid raised eyebrow gesture. Bartender. I'll have what he's having. *smiles*

I don't hear "them" today. Still see the odd thing walking by. I try to catch myself from looking. Especially if I'm around people. I'm not THAT crazy.

Finally started to get really tired. Enough to fall asleep. I hope.......

Enough BS. Bye.

Drive by bitching, crying, bitching, and whatever else will happen.

Today started out wonderful. Just fucking GREAT. Yeah yeah....sarcasm. You like? Called bank and found out they are holding the stupid pay check one a week because it comes from out of town. Whoohoooo!! money for at least another week. Debating pawning computer, ring, or car title. I have nothing else worth shit all. I can't wait until taxes come in.....won't be until Feb. 4 though.

I wasn't able to get my full script so I have no RA meds. I am so sick of feeling like shit. Don't tell me to take a fucking motrin unless you want a foot upside your head. They don't work.

Lately we have had a few scorpions around the house. I guess they came in when it got cold. So we got rid of what we saw. My three small dogs were running around the house when one yelped. I wasn't sure what happened and checked him out. His face was swelling badly. I called the vet but it's after hours. By the time we got through and I talked to him he said there wasn't really anything that could be done for Brutus (it was a bark scorpion in case you wondered, and yes I know for sure). So.....after an asprin to ease the pain he convulsed then died. We had him from a baby (I have his mother, she is now spayed)

At least Dil hadn't bonded much with him. He's a cat person. But I feel so guilty........I keep thinking if only....if only WHAT though?

My moods are all fucked up even before that happened. I can't seem to make my pelvis feel better. Yeah called doc. He thinks it's a bad cyst on both sides. I usually only get small clusters but at times I do get the large bleeding type. So...if it still bothers me in a few months I need to get an ultrasound. Or get a hystorectomy. *sighs*

I want to escape into sleep. When I try my brain races. I need a damn light switch on my head. SHIT.

This and that and nothing at all. things. Chuck got a job. Finally. So perhaps things will look up. *crosses fingers*

For Dil....he has been complaining about his joints hurting and his knees are giving out. So far doc is still thinking it is a connective tissue genetic issue. Not much we can do. Wondering how we could find a way to keep his knees and ankles braced........
And his home health nurse had a stroke. He misses her terribly right now. And keeps asking about her. She can walk and use that bathroom and such. But speech is VERY bad and memory is fucked up. Not working now.

Ah and now for me. Two nights ago I started hurting REALLY badly. Thought it was gas cramps. It wasn't. Thought maybe it was my slipped disc acting up. Nope. Still not sure. Ended up taking a bath. Passed out in bath and started shaking so bad I nearly didn't make it out. (yeah yeah pity party) Almost called my parents to take me to ER. Was SURE I must be bleeding somewhere and expected to crap out blood. Didn't happen. Had to take 2 tylenol 3. At least made me able to sleep.
Still hurting and am still not sure what. I have hunches. Ovarian cysts? This time a BIG one. I was trying to have another child and miscarried at around 6 weeks not long ago. Doc told me no more trying until we know what is wrong with Dil. But I am NOT on the pill and you just never know. I'm 3 weeks late now. So.....tubal pregnancy perhaps? Paranoid me then thinks ovarian cancer. (over reacting I know) Will go to doc if it keeps up.

Ooh and then there is the lovely little bony bump on my ring finger middle knuckle that has made my finger lose most of it's mobility. Damnit I write with that hand!!!!! It hurts. I deserve to whine so DAMNIT IT HURTS. I'm all out of indo and lorazepam. I'm broke. I'm cold and our propane was down to 5 percent. Fireplace or not it's COLD.

Enough bitching.

Maybe. Just maybe.

Perhaps I am as weak and stupid as you seem to think I am. Perhaps I let you hurt me because I feel I deserve it. OR maybe I am much stronger than you can EVER guess. And just maybe you no longer have the ability to hurt me. Perhaps I learned long ago what kind of person you are. What kind of person you can be. And now I understand. Truly understand the way your mind works. Or doesn't work at times. Maybe today was the very last time I shed tear over your hateful words and useless ignorance. Perhaps I shrug off your criticism and no longer fret over what you say. Maybe now I only pity you. Because one day I WILL rise above everything that holds me down. My chains will shatter and I will be free. And you....darling you will be alone. You will shove everyone away. Then when you DO need someone (and I KNOW you will one day) NOBODY will want to be around you. We will be gone. As much as you think you don't need us......honey you do. You just don't want to admit to yourself how HUMAN you are. Wake up dearest. I did.

*deep breath* we went to ACH again. This time saw a different urologist. One that actually cared. He said Dil has had too many UTIs.....especially for a boy. So he is on profolactic bactrim. For at least a year....he wants to see him in 6 months. And wants us back at genetics and research. Something about his joints....thinks it's all tied in together........

I'm scared..........

AND....Chuck has some liver issue.....not sure what it is right now. But the doctors have run a million tests....*sighs* He's been anal lately.......

I can't post anymore right now.....fucking meds....I can't think. Bare with me please.

Me, myself, and who the hell was that?

Today I lost my control. I let it take over. And I don't know if what I feel is shame or relief. One thing is for sure...I feel drained....completely exhausted.

I'm sorry for all of this. I never meant to make anyone feel bad. I just couldn't hack it......

This better fucking work!!

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Random updates and such and so forth.

Okay...still working on control issue. And things have been....well eh.....not as good as I hoped?

Here goes. He has missed a few med doses and of course I paid for it. :( I woke up to hell. I won't post here though. Also I was hurt yet again. Why do I stay? I'm stupid? I'm worthless? I can do no better? I hope he will be the person I love? Take your pick.

Some of you know already. I'm not ready to talk yet.

In case I don't check in tomorrow.

I am leaving on Tuesday for the trip to LIttle Rock. Chuck has to see the dentist @ 2 then off from there. Dillons appt isn't until 1pm on Wednesday...but we like to get down the day rushing and it gives Mini Pickle a chance to have fun and relax.

Right now all we know is that he's having an electromyography done. But the nurse called and informed us that he will most likely have more done. Same day...not sure. It depends on how he handles it.

We are going to take him to Little Rock Zoo....either the same day...if the test isn't really long and Dillon isn't too sore. Or the next morning. I want to make his trips fun. He has gotten so used to going down there that he now gets scared just watching us pack up his bag. He doesn't sleep the whole way down....just kinda of stares straight ahead.

So I should be back on Thursday if they don't keep us longer. I am hoping that they will just let us go home. His appt after that is with the urologist...but it isn't until May 12.

I am going to keep my phone on me and will text those who's numbers I have updates on how it goes. I can't tell you how much it means to me to have the support of my friends here. I would be lost without you.

Moods.....why oh fucking WHY?

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I thought I was stronger than that.

I proved myself very wrong. One thing after another....week in week out. The few smiles and laughs I have enjoyed the past few days did very little to actually break down the shell I started to build. I am ashamed.

Four years ago..I lost the first one. 5 weeks. Then two years Dillon blessed my life. He seemed so perfect...the first three days were wonderful...then off to the hospital. After we started to get it under control..I was over joyed to find I was having twins. I had names picked out. At 17 weeks......they were taken away from my life....I lost them. Now I don't know if it will EVER happen. It was this time last year that it started. I could have tried to handle just that...

Yesterday Dillons cat Rambo (Beego he calls him) was a bit stuffy and weak. Over night he got MUCH worse. Eyes dialated. Wouldn't eat. Dillon tried to feed him a hotdog. He loved him so. Took him to vet....something called Bobcat disease (would have to look up name). Massive brain hemorage...blinded...had to be euthanized. He went so fast. Dillon was looking for him...crying. We finally held his kitty teddy bear (that looks like Beego) and fell asleep.

It all just is adding up. I feel like I let everyone down. People keep saying "ooh if you have a girl next Dillon can be a big brother" I am scared shitless of trying again...I don't know if I can carry at all...I don't know if the next one will be even more sick. I JUST DON"T KNOW.

I took my meds...they did very little. I can't sleep...I just want to.....fade away. I can't take all the arguements...the tears...the fights I am drawn into. I can't take seeing my neice and nephew cry over their mom. I can't take all the shit going on....I can't take feeling the way I do. Everything that I can't talk about here. It all comes back full force....I can no longer bend like I did before. I can see the cracks forming and am powerless to stop it. This rollercoaster has no seat belts......

Time to get busy again.

Wow that sounded so wrong.......anyway. Today it's over 80 and still climbing. My mums roses aren't doing very well. Green thumb she has....NOT! Hehe. So I have to go run into town for her and buy some. And she's gonna let me buy a river birch for my yard :D *jumps happy*

Damn my life is dull. Oh well.

Dillon went pee this morning :D And stooled...but then he has had diarrhea the past few days.

Sis should be out next week. If she fucks up again you will see my name in the local paper...I'll be going down for murder.

Short blog....bye.

1-20 of 88 Blogs   

Previous Posts
A note to friends past and present, posted November 18th, 2012, 4 comments
Yeah I'm alive, posted April 23rd, 2012, 8 comments
Just can't get into this., posted February 25th, 2012, 2 comments
EEG results are in., posted February 6th, 2012, 12 comments
*phew*, posted January 26th, 2012, 3 comments
Wazzup? Well here goes....., posted January 24th, 2012, 4 comments
Hopefully not a booze induced over emotional post., posted March 6th, 2011, 3 comments
Antisocial me., posted February 25th, 2011, 5 comments
Random thoughts., posted February 9th, 2011
Drive by bitching, crying, bitching, and whatever else will happen., posted January 25th, 2011, 9 comments
This and that and nothing at all., posted January 19th, 2011, 4 comments
Maybe. Just maybe., posted October 14th, 2010, 13 comments
*deep breath*, posted August 28th, 2010, 3 comments
Me, myself, and who the hell was that?, posted July 16th, 2010, 20 comments
This better ******* work!!, posted July 12th, 2010, 2 comments
Random updates and such and so forth., posted July 3rd, 2010
In case I don't check in tomorrow., posted April 25th, 2010, 6 comments
Moods.....why oh ******* WHY?, posted April 16th, 2010, 3 comments
I thought I was stronger than that., posted April 5th, 2010, 5 comments
Time to get busy again., posted March 31st, 2010, 1 comment
Finally time to relax...for the moment., posted March 30th, 2010, 7 comments
Haven't been on in ages.., posted March 18th, 2010, 17 comments
Just popping on to leave an update....can't stay :(, posted March 7th, 2010, 12 comments
Btich and moan..***** and moan...., posted March 1st, 2010, 10 comments
I'm pathetic., posted February 23rd, 2010, 7 comments
Due to some advice from a stranger., posted February 11th, 2010, 12 comments
A mini Pickle update, posted January 28th, 2010, 13 comments
Some new news., posted January 8th, 2010, 25 comments
Everyday is a victory., posted January 7th, 2010, 8 comments
I found out what the results of his test were...., posted January 3rd, 2010, 12 comments
Couldn't stay long....but had to get this out., posted January 2nd, 2010, 21 comments
Once title., posted December 26th, 2009, 11 comments
To Wolf, posted December 23rd, 2009, 1 comment
Just....okay...I have no title., posted December 23rd, 2009, 5 comments
About Dillon part 2., posted December 14th, 2009, 19 comments
About Dillon., posted December 14th, 2009, 7 comments
Okay....update, posted December 11th, 2009, 5 comments
Indescribabible me....heheh..yep., posted December 6th, 2009, 15 comments
I can't think of a title......, posted December 4th, 2009, 10 comments
Just another day..another blog., posted December 2nd, 2009, 7 comments
To blah to think of a, posted December 1st, 2009, 63 comments
Vent it out...just get it all out! *takes deep breath*, posted November 30th, 2009, 10 comments
Short visit..sort of., posted November 29th, 2009, 4 comments
Just letting it out., posted November 23rd, 2009, 6 comments
Update..once again., posted November 19th, 2009, 20 comments
Just needed to get it all out..., posted November 17th, 2009, 6 comments
*sighs*, posted November 16th, 2009, 8 comments
I don't what I'm doing anymore., posted November 15th, 2009, 32 comments
Well this went well., posted November 14th, 2009, 20 comments
Update on my Dad., posted November 13th, 2009, 22 comments
1-50 of 91 Blog Posts   

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