Prayers Needed

I didn't mean to come back to my blog with more drama.

But please pray for my sister, Trisha. She was in a car accident a while ago and has been having a ton of complications from it. She has nerve damage and something else the doctors haven't been able to pinpoint.

The day before yesterday, she woke up with one side of her body and face grossly swollen. She went to the doctor and the doctor wasn't sure what it was. She believed it could be cellulitis. So Trisha was sent home on antibiotics. This morning it has spread to her throat and her breast and her doctor still doesn't know what it is.

From my research, I think it could be secondary lymphedema and I had told my mom to have her tell her doctor.

About a half hour ago, I got a call from them. Trisha is in the ER and was calling to remind me that should she pass, I am to have the boys and raise them. These boys are my sister's world. It has to be really bad for her to call to tell me that.

Yet again, I am sitting here frustrated by the medical system and how my sister could slip through the cracks and get to this point.

I feel so helpless. I know, all I can do is pray.

Of urologists, insurance and BS

I mentioned that I needed to tell the story about how Hubbins came to be in the condition that he was in to end up in ICU.

For almost a month, I had been trying to get Hubbins help through his shitty insurance. You see, Hubbins has a pre-existing condition. So insurance companies won't cover him, therefore he gets state insurance. The state insurance was doing ok, until they got this brilliant idea to screw everyone over and move them to two new-to-our state insurance plans. No test drive, just 1-2-3 SWITCH!

So it was a scramble to try and pick the lesser of two evils. Apparently, we picked the wrong one. See Hubbins current urologist, he's been treating Hubbins without seeing him. We had already gone to his primary, we had already done bladder and prostate ultrasounds. They came back normal. We were at the point where the primary said it was out of her scope and we had to see the urologist. So, I called up the urologist and tried to explain the problem to the heartless bitch nurse on the phone.

Let's just say she didn't even know what quadriplegia meant. The urologist ended up throwing antibiotics at Hubbins and we scheduled an appointment for 3 weeks later. These antibiotics killed the good bacteria that was trying to kill off the yeast in his bladder and that's how we were able to see that he physically had a yeast infection. However, that also caused the yeast to be stronger and multiply faster.

Don't think I sat around waiting. I called all 13 urologists in the book that were supposedly covered by his insurance. Not one but the one he was already seeing was covered by his insurance. Every single one I called told me that they no longer accept his insurance.

When I called his worker at the insurance company, before I could get to him, I dealt with 3 different people who tried to give me the same 13 numbers. I explained to each of them how those doctors weren't accepting their insurance. Finally, I was passed through to the case worker who did the same thing. I was made to call like a dumbass these doctors again and speak to their billing department who confirmed what I had already been told. No go.

So that meant that the insurance company had to make an individual contract with a urologist. That meant getting a referral from the primary and that meant waiting for the insurance company to deny or approve it.

We got the approval after he was in ICU already.

Did you know that if a person is on state insurance, that person or someone else can't pay cash for the "insured" person to see a doctor? It's against the law for the doctor to accept money from a state insured person. I guess it's just so much better that the person die while the state gets their shit together, no?

Oh and even with the approval, the urologist is not accepting that insurance. Apparently, this insurance doesn't pay their bills. Lovely, eh?

An Award!

I've been given an award!

Thank you Obladi Oblada!

And then the RAD hit the fan...

I mentioned my mom flew in to help with the kids. Day 2 of ICU stay number 1, the honeymoon was over. Poufy started giving my mom a run for her money.

I was talking to my mom over the phone, it went something like this...

Her: She looked me straight in the eye and lied to me!

Me: Mmm Hmmm....

Her: Like it was nothing.

Me: Mmm Hmmm, I told you this.

Her: Does she think I'm stupid and I'm not going to know she's obviously lying.

Me: She doesn't care.

Then the next day SS and the boy decided to give it a shot. I spent over an hour explaining what to look for, how we head it off, what the consequences are, etc... This time she was listening and the response was like:

Her: Oh hell no, they aren't going to be doing that crap when *I* am around.

Me: *chuckling* and shaking my head on the other side of the phone thinking been there, done that.

By day 4 of ICU stay number 1, she did me proud. Really. Apparently the oldest thought she was going to slide and be lazy with her chores and lie about what she was supposed to do and not do and what she was allowed to do. The conversation that did me proud:

The oldest in the background whining: But I did do it.

Me: What's going on?

My Mom: (To me on the phone): Hold on.

My Mom: (To the oldest) Uh uh. You're going to go back in there and do it right, I'm pretty sure your Mom doesn't allow you to do it like that, it's not even clean. Go on, get your butt back in there and do it right. If you had done it right the first time, you would be done.

(The oldest has kitchen duty, dishes by hand ever since she broke the brand new dishwasher-twice.)

And that's the way it was from then on. She was on them constantly. Don't get me wrong, she fought it because like so many of us who are first learning, we don't buy that kids this age aren't being anything but little @$$%^($$ on purpose--oh was that just me?

She witnessed the greed over food, the nastiness at the table if they think they can get away with it. Poufy stealing. I told her these things were really nothing compared to what it was like before. Things had settled down for the most part and this stuff was all manageable. I know she thought I was out of my mind. But on her very first visit shortly before Thanksgiving, as soon as she came in the door and sat down, I gave her the list of RAD symptoms and causes, etc... She couldn't deny the kids could put a check next to nearly every cause.

Something changed after that first visit too. When ever she referred to Hubbins or I to the kids, we were now Mom and Dad. Your Mom wouldn't like that, does your Dad let you do that?, etc...

She noted that the kids get angry when I would refer to their bio mother as their "Mom" and she told me to stop doing it. I've almost completely stopped but it's been such a habit that it slips out before I know it, but at least I apologize to them now. I was so worried about them thinking I was trying to TAKE that place that I never really stopped to see that it was what they wanted. At least the four younger ones.

My Mom helped me so much these past two weeks. She stepped up to the plate and she got it. She wasn't perfect, she did some things that were mistakes- like feeling sorry for the kids and letting her guard down but she learned too. Hell, I still make the mistake of feeling sorry and letting consequences slide and then I pay dearly for it.

I remember on one of my short stops home to fix the cameras and the phone (I KNOW, everything fell apart while I was gone!), I was standing in the front doorway getting ready to leave and I told my mom I was surprised she didn't catch on to CDQ's stomach problem... get this...she turned to me and said:

"Well, it's hard to go from no kids to 5 kids from one day to the next!"

I swear I stood there and stared at her. Then I said "How do you think I felt/feel?" She looked a little dumbfounded but then it sunk in. I hope she thought about it.

I've been trying to give her little food for thought tidbits to make her think a little. The other night she was complaining to me about my Aunts and Uncle and Grandparents and how awful they are. I told her she didn't need to tell me because I already knew. When she was winding down, I told her to think about the things she had just said about them and how it hasn't changed and then to think about how she left me with them when I was just a kid and how she used to tell me I was weird. I told her I did what I had to, to survive with all their quirks and weirdness and I was just a kid. She stayed quiet. What I hate is that I want her to see my side. I'm not judging her as a mother, what ever happened- happened and it's over and can't be changed. But I just want her to understand somewhat where I am coming from. She tends to take it as judgement.

The whole time we were in the second ICU stay I was on pins and needles because I knew my mom's job was in jeopardy. That morning when the ambulance took Hubbins away for the second time, I was about to cry because I was worried about my mom and her job. I knew how hard it was for her to find that job and I knew she was already behind in her bills and having car trouble back at home. I actually saw my mom have empathy for me. She looked like she was about to start crying and she actually came over to me and gave me a hug. I cannot remember her ever giving me a hug. EVER. I'm sure she probably did when I was like under 4 years old or something but I was so caught up, I pushed her away.

I told her I was worried about her job and she told me not to worry about it. But later after I had sent her back, the oldest told me that my mom must've forgotten that she (the oldest) was sitting in the kitchen because she (my Mom) walked into the kitchen and was crying while she was cooking dinner for the kids.

Hubbins and I have been trying to figure out a way to get her to move out here. She was talking about it before and there are going to be layoffs at her place of work in January and March because they are going to be sending her job overseas. Her lease on her place is up in February. In the end, I won't know if it's a good thing or a bad thing as far as the rest of the family showing up out here. I'm hoping it won't happen. One of my sisters has bought a house and her husband doesn't want to leave. They have good jobs too. The kids bio mother has also bought a house, so it won't be as easy for them to leave the state. My little sister is unable to leave the state until July. I'm not sure on the specifics of why...but she wants to move back to CA anyway.

As for the kids bio mother, my mom has seen how important it is for the kids to feel safe and protected from their bio parents. In one conversation we had talked about how their bio mother didn't need to know where my mom was living, she only needed to know a phone number to reach her and if she needed her, she could call her and my mom could go to her if necessary. My mom was completely onboard with that thought.

So it is a possibility. I'm not going to get my hopes up too high. But the level of stress that I am under now would drop significantly if I knew I had someone else that I could trust to keep Hubbins and the kids safe. It's hard being the only one that they all have. I worry so much about something happening to me and what they all would do. It's scary.

ICU Trip Number 2, Part 2

We walked quickly through the halls to the OR. The people kept apologizing for the wait. I filled them in on what I could remember. At the previous hospital, I was in the room with the man who put the PICC line in and he told me step by step what he was doing and why. It was a weird experience and at the time I couldn't understand why he wanted me to stay.

They asked me to wait outside and the big heavy doors slammed in front of me and then there was just silence. I felt so much shame for my stupidity and selfishness. I prayed some more and then I heard the words the man told me about Hubbins previous PICC line. He said he was using an artery that most people don't use because it has a 90 degree angle. He said in Hubbins case, his artery was excellent for the PICC because unlike other people's his blood flow was strong and in the right direction. I sat there kicking myself for not remembering to tell them.

Shortly after, a lady came out and told me they were having some trouble and that's why it was taking so long. I relayed what the other guy had told me about Hubbins artery and she said she would go in and tell them. About 8 minutes later, I heard whoots and yells of "YES!" and "It's IN!". Then the same girl came out, told me it was in and disappeared down the hall, she came back with an x-ray machine and through the doors she went. Shortly after that they opened the doors and told me I could go in and be with Hubbins while they waited for the x-ray. The x-ray came back perfect and off we went again.

We went back to the ER where they drew blood and got IV fluids going in him. We were there for another hour or so when they moved him to a room in ICU. When they admit Hubbins, I have to leave the room and wait in the waiting area. When they came and got me they told me Hubbins had a seizure. He had never had seizures before. He was trying to talk to me and his speech was slow and slurred and he couldn't stay awake. They told me this was normal after a seizure. The doctor asked me some questions. He thought maybe the lack of baclofen had caused the seizure since it's known to do that if you just stop cold turkey. He hadn't had any since early morning and the other hospital had cut his dosage in half.

For the most part Hubbins was stabilized now and it was his sleep apnea that was worrying the nurses. He stops breathing and takes a long time to start again. Sometimes, the lack of his snoring wakes me up and I have to yell at him to breathe. The level of care at this hospital was so different. They had quickly put Hubbins on a med regime and allowed for breakthrough pain meds to be administered.

I can't believe I am forgetting something so major. In the ER before he was admitted, the doctor came in and sat down and talked with me for half an hour, in the ER! He asked so many questions, I was surprised I had the answers. He was so thorough about Hubbins history, I was impressed. It was with that information, he created a treatment plan for Hubbins.

Anyhow, this stay at ICU was so much smoother and Hubbins was moved down to Intermediate Care after two days without incident. They didn't give him any meds like ativan to put him out. He spent most of the time lucid and watching the Food Network. His only problems was bloating and gas pain. Oh, and that atrocious bed. I don't know how those beds are supposed to be helpful.

I sat on his air bed at the other hospital and I jumped up quickly because I felt like that bed had violated my bottom!

He had minor spasms which caused his blood pressure to fluctuate but nothing major. After, I believe, three days in intermediate care, they discharged him and we've been home since.

I kept calling home to check on everyone and CDQ was better by the second day Hubbins was in the hospital. Although, things weren't to go as smoothly, considering the following:

1.) The day before we came home, the propane had run out. We were going to order more that first Monday but Hubbins got sick the weekend before.

2.) I was still on pins and needles up until Friday because my Mom was going to lose her job if she didn't get back to work by Wednesday. Her job allows ten occurrences before they fire people and they would not excuse her for this medical emergency. Hubbins was discharged so late on Tuesday night that we missed all flights going out and I had to send her on a plane Wednesday morning. She didn't arrive in Az until after 10 am and she went to work in the same clothes she came here in by 11 am, straight from the airport. Thankfully, she didn't get fired. They wrote her up and if she has one more occurrence she will be let go. I gave her a little money that I had because I know she won't be getting paid for the time she was here and she's having hard times already. I feel so bad. I know it wasn't nearly enough.

(I'm leaving a reminder for myself here to post about my Mom and this whole experience from that perspective. )

3.) Thursday night, I found myself plunging away at the kids toilet. Something was going on, suddenly, I realized how bad septic tanks are when stuff was coming into my tubs and showers. EWWW.

4.) Friday- I had to call a plumber to snake the line and pump the septic. Apparently, it was a toilet paper free for all while we were gone and that's what clogged the kid's toilet, which then backed up the entire house. The septic was an ordeal because we had no idea where it was at. By chance, I happened to mention to the guy that there was this weird piece of wood that has been sticking out of the ground since we moved here. Turns out, it was a marker for the septic. At $45 an hour to dig, plus $80 if they needed to use some mouse contraption doohickey, I was definitely relieved he found it in less than 15 minutes and cut us a break.

I can feel the knot forming in my neck from typing about all this. I am still waiting for the calm after the storm. Hubbins is still having some spasms and dysreflexia. He stayed in bed today. I'm hoping he'll stay in bed tomorrow and try to rest.

I hadn't bought a tree or finished decorating before all this happened so I've been running around like a chicken with my head cut off trying to catch up. But one thing is for sure, ever since the last trip to ICU years ago, I've been living with PTSD and hypervigilance. I've been so worried about going back that I haven't been living. I no longer feel that anymore. We've gone back twice and both times were different. Hubbins seems more like himself these days then he has in a long time. That final hour in the ER, when I thought we would break... Hubbins told me he couldn't take it anymore. He couldn't hold on anymore, the pain was too much. I stood up and I told him that if he had to go, I would understand and it was ok. It broke my heart to pieces but I couldn't stand to see him suffer anymore. I told him, I didn't want him to go, but I would understand and I leaned down and hugged him and that is when the doors flew open...

ICU Trip Number 2, Part 1

The next morning, I was getting things ready to take Hubbins a bath when he started complaining about his blood pressure. My mom had gone to the drugstore to get his prescriptions and I was trying to figure out what was wrong.

Basically, his blood pressure bottomed out and we couldn't get a reading. The numbers just kept falling on the blood pressure machine. Nothing I did would cause spasms to get his blood pressure back up. I called his wound care nurse and she asked me a bunch of questions. Hubbins was sweaty and cold by then and she advised me to get him to the hospital ASAP.

I called my mom to tell her to come home quick. She told me the insurance was questioning the prescription for a phosphate replenisher type drink. We have yet to find out what happened with that, but thank God, Hubbins doesn't need it.

I called an ambulance for Hubbins and I had asked the wound care nurse which hospital she thought he should go to. I requested he be taken there.

Now, here's where I need to back up a little. When I got home that night, CDQ was in bad shape. She had been throwing up the night before and had a fever. I took her temp and it was 101.1. She complained of pain on her lower left side and her tongue was white. I realized quickly she was dehydrated and constipated so it was milk of magnesia and pedialyte for her.

Next, one of my bettas died and another had popeye and cloudy eye. Luckily, I had the meds for that and quickly dosed him. As of this minute, he needs a water change but his sickness is almost gone.

Thirdly, I had thought that Lil Miss Purries had gone feral on me again for leaving her. The last time Hubbins was in ICU, we had no one and I wouldn't leave his side. Poor Purrs was only with us for a week when that happened and when we finally came home, she had gone feral on me.

I tried to pick her up and comfort her but she was screaming at me and swatting me with her paws. When she put her teeth gently on my hand I lost it. I put her down and I went to my bathroom and cried. Something told me to go back and check her. Her nose was dry, her ears were warm and her gums were white and not the healthy pink they usually are. Quickly, I realized she was sick too.

My mom had gone out that night and did a run for the milk of magnesia, Pedialyte and dinner for us adults. When she got home, I carried Purrs to her and told her that Purrs was sick. At that exact moment, something shot out of Purrs backside. It smelled awful and I thought she had gone potty. Unfortunately for my Mom, it shot on to her bare leg.

Turns out Lil Purrs had an abscess on her hind hip and it popped at that moment. I had to get diluted betadine, neosporin, q-tips and saline. I wrapped her tightly propped her and proceeded to empty her abscess, irrigate it with saline, and then clean it with betadine and applied neosporin. She was not happy to say the least. But the most insulting thing is probably the cone thing I made for her head out of a manila file folder to keep her from licking it. She's doing better now but still has the cone on.

All that took place the night before Hubbins went back to ICU. The next day after the ambulance left, I realized Purrs had a second abscess under the first and had to drain and dress it before I left to be with Hubbins.

When I got to the hospital, something was going on with Hubbins. They had an ultrasound machine on him looking for a good vein. They had used all his veins the previous week and they had removed the PICC line they put in at the other hospital. Because Hubbins was dehydrated and his blood pressure was low, his veins were constricted and they could not draw any blood. They couldn't even get a central line in him.

The doctor actually walked out saying she didn't know what to do for him. His nurse was pissed. I asked what was going on and it turned out Hubbins was on a list for a PICC line. He was number 8 on the list and they were all emergencies.

I told Hubbins nurse that I knew he probably couldn't tell me anything but I asked him if this was his family member what would he do? Would he transfer him to another hospital where he could get the PICC in faster. He explained to me that there was only one hospital left, and that they had just had a guy who went there with a bad headache, waited for 12 hours in the ER and was given an anti nausea medication and sent home. He came to this hospital the next morning and they found out he had bleeding on the brain. We had already had a bad experience with that hospital and vowed never to go there again before he had told me this story anyway.

He told me that in the condition that Hubbins was in, he should not be transported anywhere. He said he is frustrated as well and felt like his hands were tied. He said the decision to take out the PICC line at the other hospital was a bad one and he promised me that as soon as Hubbins got the PICC line in things would go quickly.

Three hours....three hours of hearing Hubbins beg not to die. Three hours of pain because they wouldn't give him anything, no pain meds, no spasm meds because they didn't know his situation. Three hours of up and down blood pressure. I started praying for Hubbins. I was having my tantrum with God but I really needed help. If he ever heard me, I prayed for him to help Hubbins, to give the pain to me. I would take it without complaint.

I stood there next to his bed praying with my arms around his head trying to comfort him, my mind racing and sometimes the words escaping me and having to start the prayer over. There was so much clarity while I prayed. So much of the little shit I had fought so hard over and got so angry with God over. The people that I let sway me at the catholic school and the knights of columbus. I prayed the Hail Mary and the Our Father over and over again and I spoke to God like I used to before I got so jaded.

There were times when Hubbins was lucid enough to say Amen. But he mainly begged God not to let him die. I was scared for him too. But something huge had happened the night before. After everything had died down, I had went into our room where I found Hubbins in tears. He said Squishy (Bela, our niece who was murdered by her father) had come in the room and she had her arms outstretched to give him a hug but he told her he couldn't. He was crying because he was worried he had hurt her or that she wouldn't understand. He was crying that it was so unfair that she had to be gone. I told him she would understand, when my friend Karlton died, I had a dream that we were sitting on a bench outside where we used to work and we were talking and laughing just like old times but then it hit me, he was dead. I just couldn't do it because the reality hurt so bad I woke up. I felt so bad for doing that and no matter how hard I tried I could never dream like that again. So real and lifelike.

I told him, she was just coming by to give him a hug and tell him everything was going to be ok because he was there for her and comforted her when she was 2 weeks old and was in such bad shape. I told him that was probably the first time she felt unconditional love and he gave that to her. That second stay in ICU, I kept that in my heart and mind constantly. It's not the first time Hubbins has seen dead people. His Grandmother sent him back to me years ago when we first moved here and he ended up in the ICU.

I kept telling him he wasn't going to die and he was going to be ok. Just when I thought we would break, the doors slid open and they whisked him out the door and off we went to get the PICC line in....

ICU trip number 1

Sorry if I don't remember dates, everything has been such a blur the past two weeks.

I believe it was three Saturdays ago, I ended up taking Hubbins in to the ER. I had to call an ambulance for him and I had to fly my mom in to take care of the kids.

Hubbins is taking vicodin for pain and baclofen to relax his muscles because of his spasms. Because of the yeast infection he had for so long (I don't know if I told that story but making a note to myself because it definitely needs to be told) he was having terrible spasms for weeks on end that would not let up for hours. We are talking leg, bladder and stomach spasms that were wretching him from his bed from like midnight to 6am at times. This caused him to take more of the above drugs to try and lessen the pain and spasms, which in turn ended up causing a bowel obstruction which unfortunately wasn't detected because of the diflucan he was taking for the yeast infection. Not to get too graphic but somehow he became constipated while having diarrhea and they ended up having to insert an NG tube in the ER to remove the obstruction.

From there everything is kinda blurry. First, he had colitis, then c-diff, then sepsis. At one point they thought he was having a heart attack.

In a previous post, I had suspected he was in respiratory depression and I was correct. They had overdosed him on Morphine and vicodin. Then they gave him something called norcam or norcan (sp?) to reverse it. But in doing so, they reversed all the narcotics and sent him in to vicodin withdrawals. He was sweaty and hallucinating, he was screaming nonsense, he thought he was going to die.

I asked a nurse about it and he told me "not to baby him". He said he was sick and he felt lousy and what was happening was normal. During this time Hubbins was also being given zosyn

(sp?) and flagyl for the c-diff bacteria he supposedly had. Every time they gave him those antibiotics Hubbins would go into fits and tell them he didn't want it and that there was something wrong. He was ignored, he was told that he had to have it because the doctor said, he was told his symptoms were not any that these drugs would cause and none of the nurses ever told the doctor.

I can't remember which day it was but the doctor had come in and told me things were good with Hubbins and they were going to move him down. But the next thing I know, they had an EKG hooked up to him and no one was saying anything to me. I asked the lady doing the EKG what was going on and she showed me the printout with a bunch of wavy lines and something that started with an M and tachy something on it. I had no idea. This is when they suspected a heart attack. They drew blood for cardiac enzymes and it all came back normal. They had also drawn blood to check his blood gases or something like that and it showed that his levels of potassium where so low it was coming across as a heart attack.

Hubbins did not have a heart attack. Neither did he have c-diff AND it turned out he was very allergic to the antibiotics they had now been giving him for 5 DAYS.

One nurse listened to me. I had noted all his symptoms and complaints, I had noted times when things would start and what had changed or had been given to him. This nurse called in the caseworker for the hospital and he in turn called in the doctor and the night shift supervisor for the nurses. I let loose. I told everything, details, down to who stood where and what they said.

Nurses were going to be in trouble because not one had reported what Hubbin's and I had been telling them to about the antibiotics. The doctor ordered the antibiotics to be discontinued on the spot.

Then miracles of miracles. The very next morning, Hubbins just had low phosphate and he was going to be discharged and all was good according to them. Hubbins and I were skeptical but we wondered if he wouldn't be better off at home anyway considering what they had done to him the past 5 days.

Hubbins was discharged and high as a kite on ativan. He slept through the night in his bed but the next morning the nightmare was to begin all over again.

PS. I know I am forgetting things and I will try to add them as I remember.

Home from the ICU x2

I have so much to tell you guys about the past 2 weeks.

Finally it's over. (Please...Amen!)

Hubbins came home yesterday, he's in the kitchen making apple crisp with the kids. I hope he's not over doing it. I am so grateful to be able to hear them in there laughing and joking around.

CDQ was sick but is feeling better. Lil Miss Purries is on the mend and so is my fish, Junior. When things hit the fan here they hit the fan all at once. *sigh*

I've been reading trying to catch up with everyone...but holy moly...I'm not sure if I can.

Hope everyone is doing well!

Quick Update...

Hubbins is in ICU, he has been here since Saturday. Things were looking good but now I think they are giving him too much meds and I have to wait until shift change or the doc comes in because the nurse he has now is nice enough, but I don't think he's listening to what Hubbins is saying and at this very moment he is watching tv. Argh!

I've been googling and it seems Hubbins may be going into respiratory depression because of the dizziness and the feelings of not being able to breath the meds are causing. He's on morphine, hydrocodone, baclofen and oxybutynin. All those drugs cause dizziness and possible shortness of breath especially in the elderly or debilitated.

We've had excellent concerned nurses so far, but this one... I hope the hours fly by for the doc to come in. She's wonderful too and I know if she knew about this she would change her orders. I wish I knew more about our rights.

Today is also Bela's birthday. She would have been 4 years old. I'm going to get off the computer (thank goodness for our netbook and courtesy wifi from the hospital) since Hubbins has calmed and seems to be sleeping some. I'm trying to get rest when he is. This is all just so stressful.

Lord of the Dance or Karma?

So, I told Hubbins I was going to post about this incident and he told me "you are sooooo wrong." and you know what he is probably right, but I am the one sporting the bruise and I figure I have the right. LOL!

Hubbins' yeast infection has been causing the spasms. We have a hospital bed in our house for him. When I work on him, I'll put the head up or down or whatever.

This particular time, I was trying to distract him from the spasms and decided I would try to be funny. Well, actually, I try to be funny but it doesn't always work. I probably come off more of a jerk than anything because who really wants to laugh when they are in pain?

Anyhow, his legs were kicking really high when I put his head down. They were bending at the knee as if he were kind of skipping in air. It's hard to describe.

I told him something to the effect of "Oh, you think you're bad because you can do the River dance?, Show off!"

He replied to me "I am Lord of the Dance."

I stood straight up laughing about to say something else when I got a sharp knee to my locked hip.

OW-WEE!

I had an instant bruise that's how hard it hit. I suppose I had it coming...but still. Also, I couldn't help but use the situation to my advantage to tease him some more.

What can I say it's my job. lol!

Little Miracles and a rant...

So Black Friday morning I had big plans to rush out at the butt crack of dawn and get my paws on jackets, pjs and clothes. Not much toys on the list. Just the necessities since that was what seemed to be the jackpot in sales for my family.

However, it didn't happen. Hubbins' spasms started up and would not stop. There was no way I was leaving him with all the kiddos. So I was a little down about missing out on what would have saved us a ton.

Then Flo came to town and even though that bitch she was visiting, I was coping pretty well.

See, Hubbins' body has a way of knowing when to sabotage something. I know that sounds like an awful thing to say. I don't blame Hubbins at all or anything like that but his body is known for it's uncooperative spirit, especially around holidays. Poor guy is almost always in pain. I hate it. I hate feeling so helpless.

Anyhow, of course, his spasms stopped around 8 am or so. We went about our day and at around 4 pm, I decided that maybe I would go see what I could dig up if anything.

The first store I went to had nothing. The next I scored some awesome clearance shoes the kids are going to love. They were $5 and it was a buy one get one 50% off sale including clearance. Sweet!

I decided to trudge over to THE store. You know the one with the W? Instead of going to the one by our house, I went to the one down the hill. I walked around that store at least 10 times. I saw one of the few toy sale items in the middle areas and I realized that there were still some things to be found.

I needed three jackets at the very least. My other two have new jackets already. These were the $35 and $45 jackets for $15. I looked through baskets that were left behind, stacks of crap every where and in the middle of the girls section, I found two lone brown and green jackets hanging from an otherwise empty rack. I slowly went over and that's when I realized these were what was left of the $15 jackets. I grabbed them and laid them on my cart,looking and looking for a tag for the sizes. Medium and Large. EXACTLY what I needed! I raced to the women's department because my oldest needs a jacket too. I searched and left and came back and searched again. That's where I found the sale jeans and hoodies I wanted to get her.

Just as I was going to check out, I decided to give it one more go. I found the poofy $7 jackets in sizes XXL and up. I was just about to give up when I decided to look through a rack of jackets that was more her size but not on sale. That's when I saw the 4 in 1 system tag. Just like the ones on the other two jackets. I dug through those other jackets until I pulled out the tag from the rest, it was a pink, white and black jacket size SMALL. Exactly what I needed AND it would match the shoes perfectly that I bought from the other store.

I had tears in my eyes as I raced across the store to the only scanner I could find earlier. I scanned all the jackets (just to be extra sure!) and it was like Christmas morning just for me. I had what I needed the most. I felt so blessed. I scoured that store and I feel pretty confident in saying that those were the only three jackets left in the whole store. I know it probably sounds sappy or like it's not a big deal. But it's huge to me. Even as little as it may seem that's how much and how long things have not been going our way.

It was almost too much because it came on the heels of Apple telling me that morning that I was getting a new computer. I felt like I was dreaming. Even now as I type this, I am getting a little misty eyed. I know it won't be the same way to my kids Christmas morning when they open them, but hell, I know they will be super warm and that's what counts. I have to at least be able to pull out the basics, ya know?

I guess that's why it burned me so much when my Mom called. She told me how the kids bio mother dragged her to Best Buy for Black Friday and how they didn't get in the store and ended up missing the other sales waiting. I was just so pissed.

I told her, I didn't know about Best Buy's sale because I have kids now who have needs. Of course, she said nothing. This whole thing has been one free ticket for all of them.

It makes me beyond angry that parents get to walk away from supporting their children. I wonder if people know that, especially those paying child support. Do you know if you are a total screw up and your parental rights are terminated, you don't have to pay the bill? You are free from your obligation and the tax payers pick up the cost of raising your kid, or the people who step up and take them in?

Seems to me that there should be a big pot and anyone who has a child they are not physically supporting whether terminated or not should have to pay to this pot. I mean, is that idea so far fetched? Making the bio parents responsible? Hell, dollars to donuts, I bet we already paid for the birth of the child. Why does it fall on us to figure out how to help these kids financially when we are already working so hard to pick up the pieces from all the trauma? Why is there no accountability for the bio parents? I know somebody has to do it, but still. The bio parents should not be released from the responsibility. They should pay for what they did to their children. Institutionalization, Meds, RAD camp, therapy whatever it is any other parent is required to pay for.

YET, if we disrupt we are most definitely on the line for every penny that child may need until they are 18? Plus,we aren't allowed to adopt again? The bios can continue to have replacement children at our expense and that's ok too? Sheesh!

Why do I have to chase down a basic necessity, while she's shopping at Best Buy?

I'll still pull through for Christmas and for their b-days in January, February and March. Somehow, I make it through... but that doesn't stop me from burning up over her newfound freedom from responsibility and lying in the bed that she made. Ya know?

I did every thing I could to make sure that I would never find myself in this very position, I guess the joke was on me.

I have not abandoned my blog...

I am still waiting for a computer. I haven't bitched too much about it. Well actually I wrote a really long post filled with three hours worth of bitching (slow computer) and just (literally) as I was about to click on publish, Apple called me and offered me a shiny new computer with a bigger screen, better processor, kick ass graphics and larger hard drive. All I have to do is send the old one back and wait for the new one to come.

WHOO HOOO!!!!!!

So, um, yeah....that's why I haven't bitched too much about it.

As we say in our house...it's so awesome--it's BE-AWESOME! (Hubbins and my weird take on Bolt and Rhino from the movie Bolt.)

Speaking of Hubbins, I don't know if I updated about his Health or not. Basically we (Hubbins and I) figured out he has a yeast infection for oh...about 2 months or so now. He's been on meds for it but since it's been so long we need to make sure it isn't systemic by now. I'll have to go back in my blog and see what I have told you about this whole situation so far. It sucks and it's ridonkulous. I am just so glad we figured it out. We aren't completely out of the woods, but at least we know what it is now and the spasms are almost completely gone.

I'll also have to leave a note here to remind myself to tell you about Black Friday and how I was almost a crying mess. I miss writing, I have so much to say.I was already so far behind and now I'm not even sure I will remember. I should get a little notepad and jot stuff down.

I have been trying unsuccessfully to read blogs but this computer is almost unbearable. It's enough just to try and Facebook on it. Hopefully,the new computer will arrive this week!

Learning a lot about my kids...

I changed out the keyboard on this thing because I wanted to make sure I document it all. I'll probably get my computer back tomorrow, but I don't want to forget.

First, I want to mention something that blew my mind. The oldest keeps talking about when she has kids... you know, she's not going to do this or that...blah, blah, blah... what she said that opened my eyes,

I will be the grandmother of her children.

I never assumed that the kids would think that or even choose me. I've had it in my mind that they will leave and never look back the second they turn 18.

Which leads me to tonight's conversation. I talked to my mother and my sister tonight. I haven't talked to my sister in over a year. Her choice. I don't know why.

She wanted to know what my mom was saying about her. Which honestly, not much or really anything at all. I decided I should reverse the question and ask her if she knew if my mom had said anything to the kids birth mother.

She said she had.I was sooo disappointed and in disbelief. When I asked her if she knew what, she said that the kids bio mother had called her to rant and told her "your mother actually thought she was going to call me and cuss me out." Meaning, our mother, the kids grandmother, called her and cussed her out. Apparently, she (the kid's grandmother) told their bio mother that she hated her and how the kids are scared and basically how they reacted to her (their grandmother). Then their bio mom went on to complain that, that was all she would tell her about her kids and how it wasn't right.

I don't know whether to believe it or not. It would be just like their bio mom to try and find someone to sympathize with her. If my mom had said more, I don't think their bio mom would have called my sister.

I shared with my sister how I am so worried that the kids bio mom would ruin them when they get older. I'm worried she would use them and turn the tables on them to make them feel guilty.

At dinner, CDQ mentioned how she was trying really hard not to mess up Thanksgiving. What that translates to: "I don't want to sabotage myself and ruin the fun." So they all started talking about our Thanksgiving traditions. Grateful turkeys, Macy's Parade, dog show, Charlie Brown, FOOD! They are pretty excited now.

I brought up the subject of Grandma. I wanted to make sure I addressed their fears and I told them so. When they came out, I could see from their faces they were scared that day. CDQ had denied it. But this time when I brought it up, she admitted she was scared and she didn't know it.

I told them that I thought a lot of the time they "ruined" things was because they were scared and they didn't know it. I told them I wanted them to think about what they were scared about or how they felt and see if they could say why. So next time they would be able to tell how they were feeling and take care of it before it got too big.

This was so interesting, but the convo was to get a lot more interesting.

Most of them were scared of being taken away (all except the oldest), some of the fear was from the memories flooding back, the memories of not being safe, the memories of being hurt. Talking like this also revealed that they were having nightmares again.

I decided I was going to use this opportunity to give them a voice. To start to pave the way to make sure they weren't afraid to stick up for themselves, even to Grandmas and Bio moms.

I told them that they should write a letter to their Grandma to tell her how they felt and to give her examples of how she could keep them safe. After all, CDQ brought up that she didn't feel her Grandmother kept her safe.

I also told them about how you teach people to treat you the way you want to be treated. That was a hard concept, but I think it finally made sense in the end.

They discussed amongst themselves how their grandmother could keep them safe:

Not give out the address or phone number.
Not bring them here.
Not talk about them to anyone so they won't want to know more about them and maybe come looking for them.
Not tell what they look like so their mom won't know when they get older.

There were A LOT of suggestions. But I realized that some where along the line I missed it. They don't want anything to do with their bio mother or father. I guess a long time ago my mom had put it in my head that the kids would go back with their mother once they turned 18 and I just took it for granted they would.

After tonight, I realized that for most of them, I have shifted from Aunt to Mom. I made the mistake of asking SS to clarify if she was talking about her grandmother or her mom and she corrected me. She said her bio mother's name instead of Mom. It was like a slap in the face telling me to wake up already. I heard it! I apologized to her.

Somewhere...after all of this... we HAVE become a family and it's scary and amazing all at the same time.

PS. Remember how my kids were all figety the night they knew my mom was here? Right now they are sleeping like logs. I was worried the dinner conversation would have triggered bad dreams but when they came to hug me good night, I made sure to reassure them that they were safe and I asked them if they knew that. The night is still young but it seems like that little sentence may have made the difference.

My computer is in the shop...

which is why I haven't posted the boy's b-day post yet.

I wish you could see the keyboard I am typing on now.

I thought it was going to be a great learning device for my little ones. I hate it and will be replacing it.

I found this link which shows the bundle I bought. The keys don't work unless you pound on them. argh!

I want my computer back!

I am so proud of my kids.

First off, I am still exhausted. I only got 6 hours of sleep in the 48 hours my mother was here and then soon after she left Hubbins spasms got worse all over again. *sigh* So, if this post is confusing or doesn't make sense, I am totally blaming it on lack of sleep. lol

Hubbins. We were able to get him to his primary doctors appointment. She ordered an ultrasound on his bladder and his prostate. Then she told us she was leaving the state. *sniff, sniff*

I almost cried. Seriously. She's a damn good doctor. She's Greek from the Bronx and about as real as it gets. No sugar coating, no if's, ands, or buts-- just straight. I heart people who are straight shooters. I double heart doctors who are.

I did manage to wish her luck in her new life... but damn. Hubbins good doctors are now ALL officially gone. His rehab PA, his urologist, and now this. I know I am forgetting the other doctors right now. But I am just. so. sad.

We were able to get him in to the ultrasound the next day and despite all the hell it took to get there the ultrasound itself went awesome. They took like 5 or 6 pics of his bladder and then like three times that amount of his prostate. Hmmm.... I guess we have to wait until December 1st when he sees the urologist.

I am trying to get him a new one but guess what! There are no urologists in this state that take his insurance. YAY! Actually that was another situation where I almost cried. The home health nurse was trying to help us find a new urologist and her lady at the office called back to tell us that there were none in the state. I told the home health nurse, "No, there are all of these urologists in the state, just none for Hubbins."

He's still having spasms most of the night. Last night was the mildest until they started full force around 6 am this morning. I don't know how we are both hanging in there. This sucks.

On to the kids, my mom came in at 3:30 Tuesday morning. She fell asleep around 4 am. I fell asleep around 6 am. I had briefly talked to her about the kids. She slept in until around 10 or so. This also coincides with the time the kids finish up breakfast and their morning routine.

Except for the oldest, the others hadn't seen her at all. I hadn't told them anything either. I realized this was going to be a shock to their systems but I thought it was kinder than telling them in advance and letting them worry and be scared.

I called them all out at the same time and I watched their faces as they registered that their grandmother was in our living room.

Fear. Except for the oldest. I told my mom they were afraid. She was surprised they didn't rush to hug her.

I told them it was ok. I told them that she had nothing to do with their mom and that no one else would be coming. I told them that she didn't have the address and that I had told her over the phone how to come. I also told them we still had no numbers on the house.

For the first time, my mom saw what I was trying to tell her. She held back the tears, as my kids didn't really respond. She asked them for hugs and they gave quick side hugs. SS focused on a framed poster I have on the wall that says "Families are forever." She had tears welling in her eyes. The boy just gaped. Poufy sat on the floor facing me, staring at me. CDQ wasn't sure whether to be elated or scared. So she was fidgety with fake smiles.

I told my kids it was ok to express how they were feeling and they should tell her. The boy quickly blurted out that he has bad dreams that they (BOTH his parents) are going to come and take him away. He started crying. SS started crying. I told them to come to me where they clung to me crying. My mom started crying then. I held my crying kids and told them all that no one was going to take them anywhere and they were my kids now forever. I also told them no one was going to hurt them anymore because I wasn't going to let anyone hurt them. I also told them that if my mom messed up she wouldn't be coming back here again either. This all said right in front of her.

SS and the boy stopped crying and clung to me tightly! (attachment milestone, I know of all the things to think of.) I know how it must've appeared to my mom. Us against her. Maybe it shouldn't be that way. But that's the way I want it. I want them to have their guard up with her as well.

I told them I had their work for the day set up and it would be just like when the babysitter was here. Which is basically everyone is safe in their rooms with alarms on the door and no one can go in or out. They always eat first, potty and take their water bottles with them. I give them workbook work and a book or two that I know they want to read. They are to write book reports if they finish as well. I also tell them that if they finish early they will have to just stare at the wall. Don't worry. They never finish early. I give them enough work for days. I just tell them that so they won't try to rush through it all and do sloppy work. It works! I mean who wants to stare at a wall. lol

Right before I left I caught my mom following CDQ into the room. She closed the door and I opened it right up. She was trying to lecture CDQ about giving me a hard time. I laughed. CDQ's eyes were glazed over and she was smirking. She wasn't listening. I told my mom it was no use. She wasn't listening. I also told her I didn't want her alone with the kids. So we both left the room.

Later when I was out with my mom she told me she was concerned about CDQ, she said her eyes were scary when she was trying to talk to her and what was with her laughing at her... I was glad she was able to see it and not kid herself anymore. She seemed to think a stern lecture from grandma would fix it.

So off I took Hubbins. While we were gone I decided that we should celebrate the boys 8th birthday when we got back. No one was in trouble or expecting it. I dropped Hubbins at home with the kids and picked up my mom where I discussed more things about the kids with her. We got the cake and food and came back.

The kids weren't scared anymore. They were excited. This was kind of my intention. I wanted them to have a good memory. I guess this could backfire on me if my mom screws up. But I think she gets it about my sister even. I think she thought the kids wanted her and missed her. But now she sees they are traumatized at the thought of her coming back to hurt them.

I asked her about the other kids and how they reacted to their mother coming back into their lives. She told me the oldest hates her. I said I didn't think this was going to be much different.

I already told her that what ever happens here stays here. This also said in front of the kids. She agreed. Earlier that morning, I had said the same thing. I told her that I don't feel it's for her or myself to tell. I told her if after my kids turn 18 they want to share with their mother that's fine and I'm making it possible that they will be able to share their childhood with her or anyone (their children). But it's not for us to do. She also agreed to that.

We came back and the kids watched "Up" with Hubbins while my mom and I got the cake and gifts together. Afterwards they played karaoke on the Wii. I let them stay up until ten.

My mom watched on the camera as they fidgeted in bed. It was very different from the morning before when she came in and they were all sleeping like rocks. I told her they were very scared. She said she saw that. (YES!)

The next day I was to take Hubbins to the ultrasound. We did the same thing. This time my mom checked in on the kids. She couldn't believe how they were all sitting there and doing what they were told. I told her I didn't want her doing that but I guess the kids had already made her feel like she was bugging and interrupting them. What can I say? I give good assignments. I know I do. I base it around their interests and make sure they are age appropriate. If your teacher gave you The Alchemyst (the 13 year old, all though I know she would love Twilight), Spiderwick (the 9 year old), The Mouse and The Motorcycle (the 8 year old), Transformers/Cars (the boy) and Harry Potter (the 10 year old) assignments wouldn't you be excited too? :-) I save these for just these occasions, when I need them to be engrossed in something.

Anyhow, we ended up getting out way earlier than we expected. We stopped and picked up dinner and came home and had a family meal with all of us at the table. It was good. Very normal actually.

Then my mom had to go. There were some tears. I told the kids not to worry. Again in front of my mom. I said basically if Grandma makes the right choices she will be able to come back again. Of course the right choices mean keeping us all safe. The kids were intent on that and my mom knew it. It's her second and last chance.

She took off and I had already planned to make caramel apples with the kids for dessert right after she left. They had a blast.

I have to say it's still all new and of course my mom would have been amiable to everything. But I think she gets it. Not entirely, of course. But the only thing we have to work on is her trying to parent my kids. I don't think she's doing it because she thinks she can do better or that I'm delusional like most grandparents do. At least not after the incident with CDQ. But it just seemed more out of habit. Like she's still in the days before all this happened. No one would take care of the kids and my mother would step forward and parent them when my sister wouldn't. I would too. But I was more of the first tell the adult in charge and then take care of it myself if no one else did, type.

I don't think there will be a problem with this. I remember before it all, my mom would cry because she just wanted to be the grandma who spoils her grandkids. She didn't want to be the bad guy. This only seems like win/win. Especially because I've already banned any kind of present buying. We are parents that take care of our kids so my mother doesn't have to worry or step in. We are fine being the bad guys. She can blame the things on us. We aren't worried about being friends with our kids or them hating us.

I know I sound really optimistic about all this but don't think I am being naive.

I am happy that my kids clung to me the entire time. My kids hugged me and told me they loved me and they did the same to their Dad bypassing my mother. She was all, "what about me?".

CDQ thought she was going to be "special" again but we killed that right at the start. I had trouble with the oldest acting bratty because she thought she was special because "she spent more time with grandma." But we nipped that in the bud too by telling them all that it wasn't like that anymore and they were all equals.

I tried to head off as much as I could with open communication with all of us together. I fully expected and am still waiting for my kids to lose their $%^&. But it's been a couple of days and all I got was the boy being bratty because of all the attention he got on his birthday. I think that's normal 8 year old behavior. You know the birthday child having a big head deal. lol

Given all the shocks and excitement, my kids are doing pretty damn awesome and I am so proud of them!

Change

I've been thinking a lot about what Donetta and Kether said in this post.

I believe the same things that Donetta said about change. You can only change yourself. You can NEVER change anyone else.

But how do we know that someone has changed? Especially if we have shut them out of our lives?

Yes, my mother is on her way now. No, I don't trust her but I don't have a choice. Besides how am I supposed to trust her if I don't give her a chance. She really doesn't understand what goes on here. She doesn't know. Maybe if she knew, she would see it differently.

There are things that she is seeing differently already. I am not making excuses for her either.

I'm not one to engage in the drama. I'm not one to keep rolling the codependent ball either.

But I know I have changed and I have become a bitter, angry, frightened person. I hope that I don't stay this way forever and I also hope that someone doesn't judge me when they have come across me at my worst.

But what if...what if... God is finally coming around and what if, like Kether said, this is the answer.

I don't know that my Mom purposefully put the kids in danger. My sister had the kids lying to her and telling her their father wasn't around when he was. In complete fairness, my mother did not have custody of my niece who was murdered. Why she went down with my sister, I don't know. Probably because my sister took her down with her to try and save her own butt.

I will never know. All I can know is through chance. I would never do anything to endanger the kids. If my mother does anything out of line, she knows it will be the end. She has to know this is huge for me.

17 years ago my grandfather said something to me he never should have. That day I cut him off and never looked back. My mother knows I will do it. She knows I will change my number, move and never look back.

She will see. With her faith still in tact the way it is, I know she will see what the kids being away from their mother and that whole family has done and how life has changed for them and that this is where they belong, in this family.

I think she will be smart enough to know that "this is it". One of those life changing moments/chances that she will never get again.

She has a chance to be part of this. Only time will tell. But my kids will always come first as long as I can help it.

Failure

That's why my blog went private. It was yet another thing I was failing miserably at. Just knowing that it was out there and neglected was bugging me more than you guys can imagine.

See, I have a confession.

I am a perfectionist who is afraid of failure.

How is that possible? Some of you might ask but I know there are going to be many of you who know exactly what I mean. Things have to be perfect or why bother doing them at all, right?

I used to be able to meet perfection (aka control, I mean, isn't that really what it is?) when it was just me and I only had me to account for and me living in my home. But then all hell broke loose and well you know the story...

The other thing is this blog used to be about me and Hubbins and our home. I've realized lately that I'm hesitant to post so much the way I used to. Like this blog became about the kids and their troubles and struggles and basically all about RAD and adoption. When I started blogging, it wasn't about that. Frankly, RAD and adoption and how I feel about the whole thing is just too exhausting.

I know, it's my blog and I can write about what I want to. But I went from writing for me to writing for help and then writing all about the kids and then writing about the kids and my struggles.

I also used to keep a craft blog and a book blog. Those have long been neglected.

Hubbins has been having trouble for months and I've posted nothing about it. It's escalated the last two months and up until the last two weeks he was taking it ok. He's tired and he's breaking down. So am I.

I have no one. I lose all the way around. I take him to the ER with the kids and we will probably get the swine flu. Hell as it is right now, I think I have a cold.

Hubbins will die from the swine flu if he gets it. He can't cough. If it goes into his lungs... I don't want to think about it.

I've called my mother for help because I have no choice. No alternative. She should be arriving tonight and hopefully, Hubbins night will get better and he will make it to his doctor's appointment tomorrow and not the ER tonight.

I just feel like I am breaking and like I can't fix anything right now. I can barely keep myself from being sick to my stomach. I've been carrying this for so long and I just feel like I am breaking.

I'm trying to keep it together. But every time Hubbins autonomic dysreflexia starts I go flying into the bathroom with nausea. It's hard for me to believe there is a God when I see all the pain that Hubbins goes through. He was 10 years old. What could he have done to deserve this?

He calls my name in pain and fear and there is nothing I can do to help him. To make it go away. I try and I try but nothing seems to work. All I can do is watch him in pain. I feel so selfish because I can't take seeing him like that anymore. So selfish because he has to go through it. I would trade him, I would. If I could I would take his pain from him and suffer it myself.

We had an incident with his urologist's nurse. I called the urologist to let him know what was going on (plus the primary doc had suggested it). We didn't receive a call back. Which I understand because our state has a shortage of urologists. That night he spasmed for hours. Practically all night without letting up. Even with spasm meds and pain meds. I called at 8 am to update his status.

Meanwhile, I decided we needed to look for a new urologist. We had initially sat down with the urologist and he seemed to have an understanding of Hubbins condition. He said that he could tell Hubbins knew what his body was telling him. He said he would take Hubbins seriously basically. That was almost 2 years ago.

Last year, we ran into this problem with the urologist's nurse not giving him full information. He apologized and said it wouldn't happen again. I feel like it has. Especially after the call we got from the office.

But first, I called all 13 urologists in his insurance book and they no longer take his insurance. I called his insurance and they tried to give me the same urologists. I spoke to his caseworker, who was paranoid about the situation and ended up calling the urologist, paranoid and made things worse or something.

We get a call at 2pm from the urologist's nurse. She asks questions, then she says she is going to call back. When she calls back, she asks more questions. See, she doesn't get what quadriplegia is or something because she goes on and on about how Hubbins hasn't been to see the doc in 2 years. Um, yeah because we can't get into his office it's inaccessible. The first time we went to his office, he shut the office door and we met in the waiting room. The doc himself said we couldn't get back there. Hubbins said that maybe he has to go to the other office so the doc can see him, she argued that the other offices were smaller. This AFTER Hubs had to explain he was in a chair. AFTER she was told he was a quad. The other thing, he's treated Hubbins for at least 2 UTI's since. Just out of office.

Then she says that the doc wants her to tell us that he has a very busy practice and can't always get to patients immediately. I explained to her that we had sat down with the doctor and that he said he understood the situation. She cut me off and said "you left a message at 1 pm, yesterday, correct?" I said "yes".

She said it hadn't even been 24 hours. I told her she must not have got my message I left from this morning because in that message I explained how the situation had turned to worse. What makes me think she's talking out of her ass is that her next sentence was that the doctor had only given her the message to return an hour prior. I think she was mad because the caseworker called and I don't know who he talked to there. The caseworker still hasn't returned my call so I can find out what happened. I'm only giving you half of it because I realize this is long.

So she actually had the balls to say that Hubbins had meds for his blood pressure and said he doesn't like to take them.

In actuality, this is what happens in a nutshell. Hubbins starts spasming, this causes autonomic dysrelexia, so his body thinks something serious is happening and kicks into overdrive. This causes his blood pressure to shoot up. That night it was over 200. We have to find and fix the problem ASAP so that his blood pressure will come back down. During the time that it's up, Hubbins can have a stroke and die.

I literally cry when I have to get the f'ing blood pressure machine out because it scares me so bad.

If we can't fix that problem, we have to give him a med that helps to control his blood pressure by lowering it. Problem with that is we give him the med and continue to try to fix the problem. Once and if we get that resolved his blood pressure will regulate but in the meantime the meds are already lowering his blood pressure. So then he has low blood pressure and he feels like he's passing out.

Would you want to take the meds or have your doc help you solve the problem?

So we have no urologist. All I can do is wish and hope that the primary doc will figure it's something that doesn't require a urologist.

I'm trying to keep it together. But my hands are ice cold , my face is on fire and my stomach is in knots. When we first moved here, before Hubbins insurance kicked in, he got a UTI. We thought it would be ok, because when the insurance did kick in, I called immediately to make an appointment with a urologist. We had to wait three months for that appointment. It was a week or two before the appointment, when the UTI went septic. Hubbins ended up in ICU and he almost died. I can't forget that. We were alone then too. But we didn't have the kids to worry about.

I think that's why I am so wound up about this. Since then, I have had no peace about Hubbins. I wake up when I don't hear him snoring. I freak out about any little thing. It makes me wonder about our kids because isn't this what hyper vigilance is all about?

It's too much.

PS. I made an appointment with the current urologist and am still trying to find one that will take his insurance. I will still keep the appointment with this urologist because I am going to find out the truth and let him know what's what. Ya know?

Wow...that was weird...

So, I just typed in my URL to this here blog and made a slight typo. I found myself staring at this weird bible webpage that was threatening me with the end of the world and revelations... crazy... At least I wasn't staring into someone's twat like when I accidentally mistyped "netscape" in the URL bar.

Anyhoo, I've been having a rough time around here. Not so much with the kids but just with myself. The end of October is bad for me because I am a selfish person and I mourn the loss of the only true friend I ever had. After ten years... it still shouldn't hurt like it was yesterday. I shouldn't have flashbacks to it all the week of but I do and I cry a lot because I could sure use my friends advice right now.

Normally I remember him where ever I am blogging at. But for some reason this time around, I just can't. It's still very raw. I can only wonder what his family feels this time of the year.

I'm convinced I am struggling with depression and PTSD from the time Hubbins almost died. This past month has been torture. I hurt myself and I have a post in my drafts about my ER visit.

The reason I am so convinced is because I got a glimpse of the way I used to feel. With a combo of muscle relaxers and two pain killers. No more pain, no more anxiety, no more nothing. I mean, I knew they were there...but I just couldn't care or at least it wasn't something I could really worry about because I wasn't really keeping thoughts in my head. Does that even make sense?

Even with just the one pain killer they gave me in the ER, I just felt this sense of peace wash over me and the lights weren't so bright and harsh. I can remember that. Clearly. I need that. I need that peace in my life and I need to find it without meds, ya know?

My trip to the ER...

Like three Wednesday nights ago, I hurt myself by propping my feet up to watch tv. At least that's all that we can deduce. I have a pulled or torn muscle in my left leg. I don't remember hurting it at all. I just know when I went to put Hubbins in bed I was in pain.

By Thursday I could not move. Could not stand, sit, lay down, nothing. I would get a piercing jolt of pain through out my entire leg and lower back. I don't have insurance so I was trying to ride it out.

Hubbins gave me a vicodin to try and ease my pain because at that point I was crying in agony and exhaustion because I hadn't slept. I have never taken anything stronger than an 800 Ibuprofen that my mother had given me. (No, I don't make a habit out of taking other people's meds. It just so happened I got sick right after my benefits expired when I left my last job, of course. The whole time I worked and had insurance I was pretty healthy!)

Anyhow, I woke up x amount of hours later in my underwear. Apparently I put on quite a show. I fixed Hubbins old hospital bed so that the up and down works now. I was on the floor crying while I was fixing it. I kept touching Hubbins ear and telling him it was too big and shiny and I guess I lost my pants when I decided to rub Aspercreme on my knee and my @$$. I don't remember any of it. But Hubbins said I complained to him that my leg hurt. Go figure.

I will not take vicodin again. At least I remembered everything from the Ibuprofen. When I took that I came out of the bathroom and walked right smack into the wall. I remember laughing hysterically because I couldn't feel it. Then I plopped myself on the recliner in the living room and slept there sideways for two straight days. That was at my mother's house. I remember hearing people come and go. No one ever tried to wake me or even see if I was alive. lol

When I got my prescribed meds, I was finally able to sleep. I felt nothing, heard nothing, etc... It must've been bliss. I stopped taking the meds part way though for fear it might come back again and then I wouldn't have the meds I needed.

I hate this. I was shocked when they told me I owed $250 at the ER. I quickly paid it. I mean, c'mon- x-rays, meds, doctor... I was shocked it wasn't more. But then the other day I got a bill. It says that my total visit was $700. Yeah...$700. It also said at this point, I owe nothing. But there are pending charges...and a small box that says I might be billed in the future. Darn. There goes x-mas...

I was also so grateful that my meds were only $60. I know $60 for less than 30 pills all together sounds crazy but it was something I could pay. So I was thrilled.

It's so different now. Back in the day, I never paid to see a doctor or pick up scripts. I didn't really have any but still. They would do all kinds of things on me when they saw my plan. In one instance I went in for the doc to check a mole and left with microdermabrasion on my face and arms. I'm convinced another doctor took advantage of it because he had me coming back to follow up appointments for nothing other than to charge my insurance, he told me I had a brain tumor and the last straw was when he told me I was retarded because my face was round. I had to bring my mom in. I was so young and stupid and trusting of authority figures. Turns out I was anemic, I didn't find out for another 8 years. lol

Someway, I have to get insurance. I'm so afraid of being diagnosed with RA and then being denied coverage. I've seen what they've done to Hubbins. I feel like it's not fair. Kid or not, accident or not, whoever shot Hubbins should be responsible for his medical care if it's going to be like that. Like Hubbins could help his pre-existing condition and if I have RA, like I could've prevented that, ya know? Isn't the disease itself punishment enough?

First things First...

I've been awarded a blog award from Obladi Oblada and Sheri. It's been bugging me that I haven't been able to accept them sooner. I have been in a major muscle lock down since Tuesday night...yep a flare up. This one has been by far the worst one yet.

Sorry, I didn't accept this award from you sooner ladies, I am excited and appreciative for your kind comments about my blog in my last post and also about receiving this award. Thank you!

So without further ado, The rules are as follows, make yourself a drink and pass the award on to four blogs you love. I don't drink (although I could go for a huge Coke straight from the freezer right now. lol) and I am only going to pass it on to one blogger:

Carol

She's missing her companion Kirby. She wrote a heartfelt post about him you can tell how much she loved him and what a big part of her life he was.

RIP Kirby.

Balloon Fiesta 2009

That's where we went. We've lived here for years but never have gone. I almost thought we weren't going to get to anyway.

When we got there we were directed to handicap parking that was waaaaay up on a steep hill. It was uneven gravel located next to a nice and neatly paved RV area. Can you believe that crap? Pavement for the RV's but rocks really (cause gravel is usually the same size and kind of rock.) for the handicap.

There was a guy on an ATV who was directing us. Our handicap minivan is way low to the floor and we could hear our muffler scraping the ground. He was shaking his head because I wasn't driving fast enough and he came up to us and started barking at us. I cut him off to tell him that this parking wasn't going to cut it because Hubbins chair wouldn't even be able to go over the gravel. You know what he had the audacity to say?

"Well this isn't the mall, it's the balloon fiesta."

To say I was livid was an understatement. I had gone online and researched the site and studied the maps, etc... It clearly states :

"Is the Park handicap accessible?

Yes. We have handicap parking on a hard surface close to entrance gates available for the regular parking fee every time you park as well as scooters and wheelchairs available to rent. There are also shuttles that run the length of the Park."

Lies, lies, lies...and the shuttles, they were golf carts. I'm trying to keep my composure as I type this but they were golf.carts.

The guy at the gate was so sorry that they weren't able to accommodate us. He was going to pay us back our parking fee out of his own pocket. I wouldn't let him. Apparently parking is ran by the Kiwanis Club and is a separate entity from the balloon fiesta. The poor guy from the fiesta who was trying to help was getting the run around. He told us that there WAS parking right up by the front gates and he directed us which way to go.

The parking people were so exceptionally rude. There was ONE person who helped us, but this was after the fact, after they kept shaking their heads and waving their arms frantically trying to get me to pull into normal parking spaces. We have a handicap license plate, but they were going to deny us because they didn't see the blue decal hanging from the rearview mirror. Nevermind that Hubbins is sitting there on the passenger side in a 300 lb electric wheelchair. Whatever.

Anyhow, we ended up finally driving around the park after an hour and 15 minutes. So much for being early. We were able to park right across from the ticket sales windows because at that point, I just made my own parking space. By this time Hubbins spasms were already kicking in.

We went in and the level of rudeness towards Hubbins was incredible. Yes, it was crowded. But people would walk right in front of him after seeing him. He drives with his chin and every time he had to "hit the brakes" not to hit someone he gets shifted in his chair which is bad for sores and pressure. I felt bad for him. We had about 5 people out of the thousands stop and let him through. Those people were so nice.

The kids on the other hand had a blast. We walked under the balloons. Unfortunately, I didn't get very many pictures because I need a real camera that takes pictures at night. lol And because of all the trouble he had, I didn't even get a picture of Hubbins :-(

Darth Vader going up.

He's up!

Various Balloons!

I should of went around and got the front of Nemo but there was just too many people!

What most of my pictures ended up looking like. lol!

I love this last one. There was a cowboy and a cow girl on stilts. The cowboy walked away. So they went to take a pic with the cowgirl. Look at the boy's face. He DID NOT want to take a pic with her.

Are you ready for the reason?

He honestly believed she was a giant and he was terrified of her.

LOL!