Inner Ramblings

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Inner Ramblings of My Mind — Fri, 03 Feb 2012 08:35:12 -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.

Have to Let It Go

Inner Ramblings of My Mind — Tue, 31 Jan 2012 15:00:00 -0500

I used to work for a nonprofit agency. We worked with the mentally ill (my department was responsible for the criminally insane and incompetent to proceed to trial felons), and we were funded through our local DCF office. We had to account for everything we did through activity logs, and each action we completed had a different code attached to it. There were all sorts of codes, and even one for administration duties which we couldn't bill outright for, but we had to have one for things like paperwork and certain other non-direct client work.

I'll get to the point in a minute, but I also want to add this: It's no secret that my son has been diagnosed with a few very distressing disorders recently, both physical and mental. I've been working very hard at keeping things in order, making the right decisions, and doing everything by the book so that he doesn't have to suffer the ill-effects of anything. He has a pulmonologist, a neurologist, an audiologist, and soon a speech therapist. He wears hearing aids. He has to take 3 different medications every day, and he has to see at least 3 different doctors a month. There is unyielding paperwork to fill out, calls to make, appointments to drive to, and specialists he has to see both in and out of school. Ian has been wonderful, and I think Sean and I have been doing a great job keeping communication between us, the school, and all his doctors. There are a lot of days that we all want to throw up our hands and say "screw it all!" but we don't. Because it isn't an option. We continue forward because it's life, and we all have struggles.

I was told about a great subcategory to Medicaid in November, and I jumped at the chance to get Ian assigned. Basically it's a group of 'approved physicians' in this group, and each child is assigned a nurse care coordinator. They are your 'go to' guy in this maze of health care, and you call them with questions or if you think something should be getting done that isn't. You can, I'm sure, understand why I was so excited for this, right? Someone to help me keep everything organized and someone medically trained who could give me advice and suggestions? SIGN US UP! I ran around to get paperwork, fill it out, get it to them in time, and then called to follow up daily. I was thrilled when we were approved for December, and I was finally able to breathe a bit easier.

Until January anyway, because as of January 1st, the State dropped Ian from Medicaid. I was given little notice, and I was frantic because we're talking thousands of dollars a month sometimes that our little guy needs in the form of therapy and doctors and such! This meant getting him approved for the State health care, and you can't apply for that until your child isn't covered by insurance. So, that's a minimum month of no coverage.

But, that isn't even what upset me. What absolutely makes my gut churn are these "professionals" who claim to love children and want the best for them, who sit there and hug you while you cry and promise they will do anything they can for your child... But they fail to mention that it's only if they can bill your insurance! If they can't, they basically forget your child even existed, let alone sat in their office for hours at a time and grew to trust them because they promised they would make their lives better. They can't even bother with a phone call to let you know they're aware of what happened, but they're still there for you while you work on straightening out whatever the issue is. I called and emailed just about every person who claimed to be "invested" in my son, and not one person bothered to get back to me. No one returned my call when I left a message begging for help because I was so lost, and not one "professional" bothered to contact me to see if there was anything that could be done in the meantime so that Ian didn't get confused or behind with his therapy, or suffered from not being medicated. You know who did call me? Office staff to tell me that since they ran his Medicaid for his upcoming appointment and saw it was discontinued, they went ahead and cancelled his appointment because they were sure that I didn't want to just reschedule seeing as there was no upcoming insurance for him.

I can't even begin to describe how repulsed I am by all of this. When I was working, even if 'non-billable,' I made calls to people who left me messages about their families. I made calls after cases were closed if people had questions, and I made damn sure all of my clients were taken care of. The fact that these people can just ignore someone who is in need, let alone when that person is a child, makes it hard for me to see them as professionals, let alone human beings. Sure we pulled through and we made sure Ian was taken care of and got what he needed, but the fact remains that I am beyond disappointed by these people that I trusted with something more precious to me than my own life. They failed.

Of course now comes the question of how on earth I am going to continue a working relationship with these doctors. I have to for Ian's sake because, like it or not, they've been there since the beginning and really are the best for him, but I am so furious that I worry about how I'm going to handle it all. Mostly with the nurse coordinator I fear, because to me she's the most despicable of them all...

Chocolate cake is never a bad idea

Inner Ramblings of My Mind — Mon, 30 Jan 2012 09:32:04 -0500

Guest post written by Paula Brantmeyer

I'm really big on desserts. I've always been that way. My husband isn't so much but our kids are really into desserts too. So each week, I like to pick one night to serve a really tasty dessert at dinner. If I did it too often it would make it not nearly as special. I'm always on the lookout for new things to make and like to look online to find those great new recipes.

A few nights ago when I was looking online to try and find a good recipe, I ran across the website http://www.debtsettlementfamily.com/calculate. Our family is in debt and we haven't been doing a lot to get out of it, so we obviously need to start making some moves to help get out of debt.

I have found all kinds of great recipes over the years and have even made a few of them multiple times. I also have a folder on my computer's desktop that has some of the better recipes that I've made of the years. I don't even own a cookbook any more!

Taking the Reins

Inner Ramblings of My Mind — Wed, 25 Jan 2012 10:17:26 -0500

Someone said something awhile ago, and I didn't even really notice it until someone else pointed it out. I didn't "get" it at first, but with our new way of living, it's made a lot of sense to me, and it's helped me change my thinking and my emotional reaction.

"I choose not to spend my money on that."

Sounds so silly, but WOW does it work. I've found that by using that mentality, not spending money on something makes me feel empowered rather than deprived. We all have choices, and I could very easily take out a credit card and charge whatever I wanted at that moment. However, by making the conscience decision to not hand over my plastic or cash, well, I'm in control. Isn't that what we all want anyway, to be in control? It's made things a lot nicer, if only in my own head

Change of Habits

Inner Ramblings of My Mind — Mon, 09 Jan 2012 17:50:51 -0500

I'm trying hard to watch our money. No using credit cards AT ALL! If we don't have the cash, we don't get it. I have our bills set up on a monthly calendar, and I make sure to plan ahead if we go anywhere (i.e., we eat or bring snacks to the theme parks!). I also don't go the the store to "browse" anymore, and I'm much more careful with the amount of gas I use, especially since the price keeps climbing! I'm getting ideas for fun, at-home or nearby or free things to do this summer, and you know what? I don't mind it! It certainly cuts down on the guilt factor of should I/shouldn't I regarding purchases, and I find the stress isn't there as much. Except when I look into our bank account online. Which I don't try to do... much.

Thoughts

Inner Ramblings of My Mind — Thu, 05 Jan 2012 12:40:56 -0500

Hanging on my a thread here. I wonder what life would be like if I didn't have to worry about money. What would be different? What would I do? Where would I go? Even if I didn't have piles of money, I wonder what it would be like if I didn't have to stalk the bank and float checks... What would that feel like?

Forward, March

Inner Ramblings of My Mind — Sat, 31 Dec 2011 13:27:06 -0500

Once again I'm struggling with decisions. We got some news which did NOT make me happy, but at least it's spurring me to get moving on something (namely my writing!) that I've been dormant about. I've actually joined a writing group, so hopefully through that I'll get some ideas about what to do once I'm done. Motivation is not a factor right now because I'm terrified my world is going to come crashing down on me (financial-wise only, thank goodness), but I hate working without a guarantee of something happening once my part is finished.

Moving for a job

Inner Ramblings of My Mind — Thu, 29 Dec 2011 16:25:28 -0500

This guest post from Edgardo Rosa

It has been a month since my husband told me we were moving to Texas for his job. I have to admit that I was really excited when he told me because I am originally from Texas, so I thought it would be great to be closer to my family and old friends. He as a manager for a medical supplies company that just started a new branch where we will be moving. Our real estate agent has been emailing us potential houses for us to live in, but I have not liked any of them so far. I did look into getting internet once we get there and found a good provider by searching “4G internet Burbank”. I want to support my husband in his career and this is a promotion that will be good for our family in the long run. I am trying to keep an open mind about the selection of houses. I just need to remember that the house that we choose now does not have to be permanent. We will probably end up moving within a year of when we move there.

Renting a Home in Edmonton, Alberta

Inner Ramblings of My Mind — Thu, 29 Dec 2011 16:19:27 -0500

So many people are moving out of the state. Not only that, a few people I know are even moving to Alberta, Canada! I've never been, and they're going there without having visited either; at this point, I guess you just have to go where the jobs are!

Since they haven't had time to do any investigating, they're looking for apartments for rent in Edmonton, and they really like the area. They've found some great homes for rent in their price range too on RentEdmonton.com, which is a great site for people looking to rent a home in Edmonton, Alberta. I looked at it myself to check out a few homes they mentioned to me, and the site is great! Easy to use, simply laid out so even those of us with, um, less than stellar computer knowledge can use it. I was even able to check out some places that they hadn't seen yet, just by clicking the area they're interested in!

They're pretty excited about going up there now, especially seeing what housing is available! I don't know about the cold myself, but if they have an extra room, I might just take a vacation there when they get settled. Better get my passport updated! :-)

Forward From Here

Inner Ramblings of My Mind — Tue, 13 Dec 2011 08:13:32 -0500

Now that my life has settled down a bit, I'm finally able to write! Admittedly, I've been working on my other blog a bit, but I think things have gotten to a point where our lives are getting into more of a routine with only occasional interruptions for specialist appointments versus specialist appointments interrupted by life. So, hopefully I'll have some interesting things to update in coming weeks!

My first goal that I'm going to throw out there in order to hold myself accountable, is that I'm going to devote at least 3 hours a week to my writing. Doesn't sound like much, but it's more than I'm doing now! I have had this story swirling around in my head for a year now, and then I actually had a dream in which I was discussion another story with someone, and I had a clear beginning, middle, and ending. I can't ignore that the idea was just handed to me, so I think I'd better respect it and GET TO IT!