Inner Ramblings

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Inner Ramblings of My Mind — Fri, 03 Feb 2012 08:35:00 -0500

I'm almost in shock at this point.

Things with Ian are a mess, almost to the point they were when all of his diagnoses started coming. At least then I had some idea of where we were going, but right now I don't have a clue.

His insurance has been reinstated, but it's with a specialized medical group. This means, of course, that some of the people we've been working with aren't covered, so we have to make changes. His pulmonologits will need to be changed, but our nurse coordinator is helping with that. I'll have to get his records and such, but she'll make the appointment at least. The other thing is speech. He had the evaluation through All Children's Hospital, and they recommended that he have ABC speech therapy (which is basically specialized for kids with hearing aids and loss of ability to hear certain sounds). He was on a wait list, but a spot opened up for this month. I grabbed the spot, then found out that his new coverage doesn't cover it. We were quoted a self-pay amount which made me want to cry, but I said to go ahead because I don't want my son left behind, especially since his hearing is decreasing somewhat. Well, got a call yesterday that the price it triple what we were quoted because the woman hadn't realized it was "specialized" testing. Well, no matter how badly I want it, there is no way we can afford that weekly. Not by a long shot.

So, at this point he has to get reevaluated for speech by a group approved by CMHS, then they can make their own decision about speech therapy. He also isn't medicated at this point because CVS can't figure out how to get him into their system using the CMHS ID code (which was another lovely experience dealing with THAT for 2 days), and we can't buy just 1 or 2 pills because it's a controlled substance and that would void the script. Finally, I approached the school because I had let the lack of support around his speech therapy through them lax since he would be getting the therapy through All Children's, and yesterday I was told he "doesn't fit the criteria" for the school's services.

I am beyond frustrated once again. I can't believe that we're back to almost square one, and I have to start the fighting for results I thought we already had.

Phone Messaging

Inner Ramblings of My Mind — Wed, 31 Aug 2011 13:21:00 -0400

I'm exhausted and angry and scared.

The pharmacy called me yesterday about a medication that was called in for Ian from the pulmonology specialist. I had no idea about any medication or anything, and I knew it had to do with the second round of blood test results. I called them yesterday and asked for a return call to discuss the medication and the results, but no one called me back. I called them again this morning since I was going to be on my cell phone and asked them to fax the results and to PLEASE CALL ME since the pharmacy can't fill the prescription due to it not being covered by Ian's insurance. It is now 1:30 pm and I still haven't gotten a return call! I got the results faxed as requested, and the results are confusing and frustrating for me to figure out. I looked up the medication on my medical CD, and it's for a fungal infection that starts in the lungs and moves throughout the body. The usual duration to take his medication is 3 to 12 months. I am freaking out because there are other things that this medication can be used for, and none of them are good...

This is the second time that they've sent medication into the pharmacy to fill for Ian without them calling me to discuss it. They are starting to really tick me off!!!!!

Greedy

Inner Ramblings of My Mind — Thu, 23 Jun 2011 13:09:00 -0400

I am super irritated but trying not to be. I know that the subtle (or, not so subtle to me) changes at work are part of it, and another part is being stagnant as far as moving. The main part is, however, the lack of donations for the 3-Day walk! It isn't exactly the lack, because I know I haven't been vigilant in asking for donations (that will start in July), but rather the way people just brush it off. I watch time and time again when people announce they're selling products like Avon or some Tupperware-something-or-other, the people I know drop a handsome sum on that, but when I mention the 3-Day, it suddenly becomes, "Oh, I wish I could donate. Times are so tough right now though..." Really? Didn't seem that tough when you dropped that $70 on a bundt pan that I know you will never use, or that set of earrings that you and I both know would look better on a circus animal... I guess we've all become so "gimmie" that the honest feeling of doing good gets surpassed by getting something in return. It's so sad.... and what makes me sadder is that the view I've had towards people I know are changed now. Pay $10 for a shot of Jack Daniels or put it towards breast cancer research? Yeah, I can see the dilemma. Donate $40 to ending a disease that will touch everyone's life in one way or another or buy another purse? The choice is obvious, considering there's a great cow-print bag on sale RIGHT NOW! Don't want to miss out on that, that's for sure.

Ugh.

Waving Good-bye

Inner Ramblings of My Mind — Wed, 08 Jun 2011 08:14:00 -0400

When I moved here 10 years ago, I did it to escape. I was very self destructive when I lived up north; if I had been better educated about depression I would have been medicated, but not knowing, I did what a lot of people did and turned to substances as a means to "self medicate." Moving to the south was a chance for me to start over, a chance to start a new life for myself and create it the way I wanted. (Granted, I was a fool for bringing some of that self destructive with me, but that's another story).

My father moved down here not long after I did. We had a family company down here, and he needed to come down and streamline some things. Once here, he never left. My mom lived up north for another year, then she came down as well. Only a few years later was when my brother and sister-in-law decided to move down with their family, and it was so amazing to be in a place I loved with all the people I loved!

Now with my brother leaving, I feel like half of my heart is being ripped away from me. I can't even put into words how much it hurts to know that they're going to be 1300 miles away and that seeing each other is going to be a major event rather than a split-second decision... The kids are going to change so much, and their lives are going to be constantly changing, and I'll be just "that aunt" from Florida.

Two more days and then they will be gone...

Scales

Inner Ramblings of My Mind — Fri, 03 Jun 2011 08:09:00 -0400

I am getting so frustrated with the whole "school issue." Everyone seems to have an opinion, but no on really has a say in what should be done, if you get what I mean. I know it's ultimately my decision, but Sean has say too, and I know what he wants to do. My mother very clearly has an opinion, but the thing is, this is a huge deal for me. This is his education, and I don't want to make any mistakes. He's had such a rough start, the last thing I want to do is mess everything up.

He didn't test in to AGP (kinda pisses me off that no one has bothered to say anything to us!), so we're back to where he's going be sitting off to the side doing 'different' work than the other kids because he's grasped the concepts earlier than the others. It hasn't bothered him yet, but it will. I know it will.

We were told by his teacher that she's moving to second grade next year and is taking the whole class with her, if the students want to go. I'd love that, which is another reason why I don't want to move him to a new school... if we move him and we end up not liking the school and move him back, who's to say we'd get a great teacher for him then?

Sonofabitch!

I have a meeting with the principal this afternoon, so we'll see where our heads are at after that.

Fool Me Twice

Inner Ramblings of My Mind — Thu, 17 Mar 2011 08:53:00 -0400

My "fun" computer crashed, which is the computer I use to play games on... and to keep my pictures on. Unfortunately, it looks like the whole hard drive has been wiped clean, so there all my pictures of Reilly that I had in files based on months. The whole first 2 years of her life are gone! I am so pissed off at myself, because when that happened to me last year, I SWORE I would back the stupid thing up every week. Did I? Nope, of course not. So I spent yesterday being sad, and then I started going through pictures on Facebook and some memory sticks that I had in a drawer, and I found a few from her baby years. So, at least I have those, and now I've made a commitment to myself to get them printed and start scrapbooking once again. I lost all of Ian's baby pictures, and that still makes me sick, 4 years later.

Mistake

Inner Ramblings of My Mind — Wed, 02 Mar 2011 08:27:00 -0500

I think it's time to admit that I've done some very, very wrong things in raising my son. For the longest time I thought I was doing the right things by him, but it's becoming very clear that I've screwed up somewhere.

I have spent the majority of his life standing between Sean and Ian. They are so similar, and I've felt that Sean is too hard on him, expected to much, etc. Our biggest fights have been about our son, and I've never, ever backed down when I felt I was fighting for Ian's behalf. BUT, in doing so, I'm afraid that I've created a selfish, self centered, nasty little creature. He's rude, sarcastic, and just plain mean half the time, and this morning I realized that he basically runs the house. At 7, he dictates the mood of the house, and I just can't take it anymore! I have inadvertently given him all the power, and it isn't healthy for any of us.

I have to wonder when it changed. I used to be so big into the discipline that I was complimented by people about how I was so clear in my standards! There was even a time when I met my friends at the zoo and then left after 10 minutes because his behavior warranted it. I was always very consistent and I never "gave in" any time, and he responded to that well, even if at times it was really inconvenient for me and the people I was with. My thoughts were that I was trying to raise a child who would imprint the world in a good way, not to make peoples' lives easier!

Where on earth did it all go so wrong?!

Tonight he has a baseball game, but on Thursday we're sitting down together as a family and will discuss our expectations and the consequences. I can't live like this anymore.

Really?

Inner Ramblings of My Mind — Sun, 26 Dec 2010 19:30:00 -0500

I'm always surprised at how disillusioned I can be about some things. I'd like to think that I'm not a moron, but I'm beginning to wonder... Anyway, it isn't a big deal; I guess I was just taken by surprise that I could have been so mistaken.

It really sucks when you think that you're closer to people then you really are. Kinda makes you sit back and rethink a lot of different things and redefine others. I get so angry at myself when I break down and let myself feel comfortable around people, start to trust them, and then realize how wrong I was. Every time it happens I swear I won't let it happen again, and then it does anyway. I'm tired of trying to figure people out, trying to figure out where I went wrong, how I could have made the mistakes I made or what I could have/should have done differently, why I'm the one who seems to always get hurt.... How I could have been so very wrong...

Still With the Bullshit?

Inner Ramblings of My Mind — Mon, 20 Dec 2010 17:33:00 -0500

I know that I am in control of my life in the important ways, meaning I know that only I can choose how to let something affect me. I have the power to move on, or to agonize or something. I can walk away, or I can stand there and beat my head into the ground over and over again... I have gotten good at just moving along, but there are some things that still irk me.

This person is still making my skin crawl. Nine times out of 10 I could give two shits about her and her life, but every now and then something happens and I, very seriously, would strangle her if she were within arm's reach. I think it's the blatant rudeness and obvious snubbing of me personally that gets me. In my own personal life I go above and beyond to NOT be rude to people even if I don't want them around me anymore, and I try not to throw subtle (or not too subtle) barbs their way or write some vague bullshit for them to "stumble" upon online. So, when a Christmas Card comes to MY house where I live with MY family, THAT IS ONLY ADDRESSED TO MY HUSBAND, you had better be sure that, if you are the addresser, you keep far away from me in the future.

Again?

Inner Ramblings of My Mind — Thu, 04 Nov 2010 08:19:00 -0400

My heart hurts.

Things for my mother are a bit tricky right now, and I am scared. When she had her last pulmonary embolism (after the mastectomy in 2008), she had a filter put in her leg to help stop any clots that may form from reaching her heart or lungs. Over the summer she had some blood in her urine which they thought might be caused by kidney stones so she got an ultrasound; turns out that she did have stones, but the film also caught a bulge in her vein. The radiologist read the films, and it they found that the filter is pushing through her vein.

She met with the surgeon yesterday, and there is only a 40% chance of successful removal. It is also complicated by the fact that she is on Coumadin (anti-coagulation medication) which makes surgery tricky because she'll have to come off the Coumadin, but that's dangerous too because then there's the risk of clots. However, if they don't remove it, there is a risk of the metal coming apart and the pieces lodging into her heart. It's been happening to people who have this filter, so it's a real possibility... Please just keep her in your thoughts if you would.... She can't seem to catch a break