Our Life In The Desert » Rant

Protected: So, I got a phone call today…

Brandy — Fri, 01 Jul 2011 04:16:59 +0000

I’m not ashamed

Brandy — Fri, 20 May 2011 14:14:26 +0000

The other day, I wrote that I’d gotten a call from M’s mom regarding my diagnosis. She said in reading my emails that I’d never told them what my actual diagnosis was.

This doesn’t surprise me. I have been fairly vague about what my actual diagnosis is, because of the vast amount of misunderstanding that is out there. Before I had even been officially diagnosed, but after initial findings had been recorded in my chart, I was treated rather poorly by the EMT’s who did my hospital transfer, all because of one word.

Hepatitis.

Hepatitis is a medical condition defined by the inflammation of the liver and characterized by the presence of inflammatory cells in the tissue of the organ.

I have Autoimmune Hepatitis.

Autoimmune hepatitis is inflammation of the liver that occurs when immune cells mistake the liver’s normal cells for harmful invaders and attack them.

My immune system has attacked my liver to the point that it is mostly cirrhotic — my specific Dr. operates on a 5 stage scale, however most use the standard NDDIC 4 stage scale — either way, I’m in the last stages of liver cirrhosis. I will die without a transplant. That is my reality.

Cirrhosis. Another one of those scary words that makes people act stupid.

My disease causes cirrhosis.

Cirrhosis is scarring of the liver. Scar tissue forms because of injury or long-term disease. Scar tissue replaces healthy liver tissue and blocks the normal flow of blood through the liver.

When you use words like hepatitis and cirrhosis — people lose understanding. They treat you different. I’ve been treated differently as a result. It sucks and I hate it and because of that experience, I share less.

No, I’m not ashamed — but I am pretty closed mouthed — it’s a self preservation mechanism and in the end — we all lose.

I’m having a rough day today and I just needed to vent a little. Now, I’m going to go take a nap — because I’m tired. I’m always effing tired. Ugh.

I’m so glad school is almost over

Brandy — Tue, 10 May 2011 18:09:24 +0000

I have never been so glad to be at the end of a school year in my entire life.

This year Jerrett was a sophomore. He has a special needs/autism advocate at school who is supposed to manage his school situations. She is supposed to make sure Jerrett’s individual needs are being met and that he’s not struggling to complete the tasks assigned to him in the mainstream classroom.

We made the decision to have Jerrett attend on a mainstream track based specifically on the fact that he’d have this support in place – should he need it.

All year, he’s needed it and each time I’ve tried to reach out – the advocate basically forwards my emails to his mainstream teachers for them to deal with.

NOT OK! It is NOT ok for you to not do your job, I’m sorry.

If I simply wanted a middle man who was difficult to work with and who couldn’t communicate with me, I’d communicate through my son!

So here we are, at the end of the school year and as expected from a year full of fruitless attempts to get Jerrett the help he needs, he’s failing.

Until high school, Jerrett has always had an aide that helped ensure he had the stuff he needed to complete his assignments. He had someone in class who could make sure he knew what was homework and what wasn’t and more importantly, at the end of the day, someone could sit down and jot me a quick email letting me know what was going on, so I could advocate for Jerrett here at home.

Not any more – and that’s ok, really it is. I understand that he can’t have an aide guide him through his entire academic career – but honestly, can I get a little teacher communication to make up for it?

Two of the teachers only log in and load grades in the online system about once a month and when that happens we get to do a whole months worth of missing/lost assignments that we turn in for half credit.

Since April 12th, I’ve been trying to get two of his teachers to allow Jerrett to attend tutoring to help improve his grade – I finally sent one of them an email this morning and just asked to have the assignments he’s missing sent home, because I’m sick of driving up to the school to pick up the kid, only to discover the teacher was nowhere to be found and tutoring didn’t happen.

We have a lot of struggles just parenting Jerrett – add the complication of a difficult school situation and it only makes matters worse. I get frustrated, angry and irritated that the work doesn’t get done and get turned in. It is, of course, his responsibility to make sure he passes – I’m not looking for a free pass for him…but for Pete’s sake, lets at least give him the basic tools he needs to be successful.

I am so glad that this year is coming to an end. I really hope Jerrett passes – but I suspect he won’t and that makes me sad. Next year, at his new school – I certainly won’t be giving any IEP concessions – not after this experience.

I had to come back and add — as I said, I sent an email to one of the teachers this morning regarding Tutoring. We’ve had trouble getting him to follow through (the teacher, not Jerrett) and even getting email responses has proven to be difficult at best — but low and behold, the email I sent this morning just got a response.

He’s more than happy to send home the assignments for Jerrett to do from home.

Jumbo Shriemp and Pump Jacks

Brandy — Tue, 10 May 2011 03:53:55 +0000

I know I’ve posted about it.

If we’re friends on Facebook or Twitter, you’ve seen me complain about it.

But I don’t think you quite get the gravity of the situation…so I wanted to show you.

A few years ago, we went to visit Bakersfield for Thanksgiving. While we were there, we went driving around so John could show me the sights. He wanted to show me the Scenic Overlook Park or some crap — but on the way, we passed this restaurant and on the window, they had signage for their specials.

I had to actually stop, turn around and pull in. I was floored:

Yes, that says “Shriemp” right above where it clearly says “Shrimp” and I guess the proprietor decided it would be to costly to correct the mistake — so he left it as is. What you can’t really see in the picture, but is glaringly obvious in real-life, is the fact that the P, at the end of “Shriemp” has been forced into the space, so much so, that it’s deformed and misshapen.

It scares me.

But I digress – we were headed to the scenic overlook…which I was really excited about…until I saw the scene it overlooked…(You can click, they get bigger…but don’t say I didn’t warn you!)

Pump jacks as far as the eye can see…

Did I mention that John suggested I not use Gilbert as a measuring stick for the entire world? I’m not even sure Baghdad could give it a run for it’s money…

I’m scared…someone hold me

I’ve also been following Bakersfield News on Twitter — they sure kill a lot of people there…

Can adopted adults pass muster with the birthers?

Brandy — Wed, 27 Apr 2011 21:09:17 +0000

I realize I’m behind the curve ball here on this breaking news – I’ve actually been processing it and trying to decide exactly how I feel about reading that, this morning, President Obama released a copy of his long-form birth certificate.

We all have a long-form birth certificate on file with the Registrar in the state capital where we were born and the information on our long-form is roughly the same as you see on the Presidents. It’s got vitals, Dr. information and information about our parentage.

Where an adoptees long-form differs is that on our long-form, it lists our adoptive parents as the parents who, based on the information provided, gave birth to us.

This, is a lie.

What might also be different, for some adoptees, is the place of birth and location of birth. It wasn’t uncommon for adoptive parents, and their legal representatives, to request that the location of birth be changed to some other location, to ‘protect’ children. It might actually surprise you that this practice still takes place today – although its far less common than it used to be.

So, another potential lie.

In Texas, it was routine to redact certain information from an adopted persons birth certificate, to make it more difficult to ‘search’. Post 9/11, it also made it impossible to obtain a Passport and if you’re one of the lucky few, trying to obtain one was a fight you’d have to wage for years.Thankfully, this only impacted a small number of adopted persons born during the end of 1973.

The information that was omitted has now been reintroduced and below is a slightly altered copy of MY long-form birth certificate. I’ve altered the ID number and the maiden last name for my adoptive mother – for obvious reasons. I’ve also taken the address of my adoptive parents off of the form, as my mother still lives there and I’d like to protect her privacy, as much as possible.

The “Irving Community Hospital” (which now operates under a new name) was the redacted information – they’ve ‘added’ it back in – you’d never notice at all, would you? To go one step further, the purpose of the redaction (privacy) seems a little silly when you consider I was born in a city with one hospital, which wasn’t all that uncommon back in the 1970′s.

Now, I’ll do you the favor of showing you some of the comments I found while looking through news stories:

If you look at my certificate – the document was filed on 11-Dec-1973, a full 13 days (almost two weeks!) after my (alleged) birth and just 15 days shy of the legal requirement to establish citizenship in the US (A birth certificate on file with your registrar within 30 days of birth).

So, to be quite frank – after reading the stories today and reviewing my own long-form birth certificate – I wonder if my birth certificate would pass muster with the birthers?

The birthers are the same right-wingers who fund Focus on The Family and the National Council for Adoption – the lobbying groups who work tirelessly to keep access restricted under lock and key for adults who were adopted.

You can’t point out everything that is wrong with President Obama’s birth certificate then turn around and tell me that all the same things are perfectly OK on my own. You can’t, It’s bullshit and bullshit stinks.

Maybe I’ll write more on the topic, as I stew over the injustice of this ridiculous double standard.

A collection of random thoughts

Brandy — Tue, 26 Apr 2011 13:44:34 +0000

I was going to try to write about something deep this morning. I actually got a really great start on three awesome blog topics, but I couldn’t flesh any of them out and they all kind of seemed bleh as they were. So in lieu of giving you some really awesome adoption-focused ramblings to read this morning, I give you: The List Post

Mother’s Day is a little over a week away. I don’t celebrate. This year will be no different.
I woke up this morning, did some basic addition and subtraction and the end result was that I got a whole day as a reward. That’s right, a whole day. When I last did the math, I somehow came up with the wrong total number of days gone. This time, I came up with one day less and that means, rather than having to wait all the way till tomorrow to be ‘half way’ – I get to be half way today! How awesome is that!?
In my attempts to come up with something worthwhile this morning – I wrote about what I felt like as an adopted person growing up in a family that was very different from me. It was kind of sad to realize that so much of my potential was snuffed out before it even had a chance to blossom because of personality/nature differences.
I am a firm, firm believer in both nature and nurture and I don’t think it’s an ‘adoptee only’ issue. I have a lot of personal experiences with the concept, having grown up with my parents biological child in the home.
I sometimes struggle with the fact that I’m not sure I’d want to ‘do over’ the period in my life that lead to me making the decision to place Kiddo for adoption. I keep coming back to the “hind-sight” argument and the fact that I’d likely have a very different life than the one I have now. (Keep in mind, I’m talking only about my own experiences, not yours.)
I plan on writing about my varied reproductive experiences for Mother’s Day. Since I’ve decided to be open and honest, you should know that I’ve been through almost everything that a woman can go through – including an abortion.
I am prepared for the ‘well you killed one baby and gave one away – now God is punishing you’ comments that will, undoubtedly, flood the comment queue.
I wonder how many people automatically hate me now, simply because I disclosed that information without any back story.
This morning, I woke up sleeping across my bed and that made for a very discombobulated morning.
My list of stuff to get done is shrinking. So is the number of days left in this fun and exciting experience.
So, we’re coming to the end of National Donate Life Month – I suppose all of the ‘pro-life’ folks have registered to be organ/tissue donors so they can do their part in saving a life, right?

Well, I have a few things to get done today – so I need to shake a leg. Thanks for letting me get all of *that* off my chest – ugh. Maybe now I can actually *write* something!

iPhone Data Plan with AT&T – An Update

Brandy — Wed, 20 Apr 2011 01:45:17 +0000

Remember back in November, when I wrote about my experience with with my iPhone Data Plan with AT&T? I talked about how I tried (and failed) to get someone at AT&T to help me figure out what was going on – because I’d not made a single change to my phone, not added any apps and not used it in any more excess than I had in my previous years as an iPhone user. I wrote how I’d filed a complaint with the FCC – which was a joke by the way – and I even commented how someone from the FCC took a keen interest in what my blog said – reading it for updates, comments and information on a daily basis.

I’d updated my post a few times – finally sharing the resolution that a frustrated AT&T Store Manager offered – which was putting me back on the grandfathered unlimited plan I’d been talked out of during my upgrade.

Basically – they didn’t fix the problem – but they fixed me coming in bitching about the $20+ overages in data I was experiencing.

Well, I have another update.

I logged into my account on Sunday to pay my bill and I thought I’d check out the data usage.

Here is what I found:

They changed my plan in December.

Ironic? Yeah…I think so too.

There you go, Mr. FCC man who reads my blog.

Also, AT&T: Having your “Office of the President” people call and try to explain to me that my bill is more because I am using it more isn’t super helpful – especially when they just keep repeating it, over and over again, with every question you ask.

Two steps forward, three back

Brandy — Mon, 11 Apr 2011 14:06:26 +0000

This weekend was hard. A lot harder than I expected it to be. For the last few weeks, it’s been hard because I’ve been alone and I’ve been having to do all this work to try to get the house ready and I’ve been struggling with just feeling good without all the stress of having to worry about trying to rent the house out – we’d already done that.

Then Friday night I got an email from the renter. She’d lost her job. She’s a teacher and her contract hadn’t been renewed.

Crap. Back to square one.

I had planned to spend the weekend packing, cleaning, painting the baseboards and maybe taking a stab at the kitchen ceiling – but instead, I had to stop what I was doing, pull my house together and re-list it for rent…

It’s bad enough parading people through your house while it’s full of your furnishings and personal items – it’s worse to try to show someone how beautiful your home is when everything you own is packed in boxes, stacked all over the damn place.

I had a few people come look – one of them even called me back the next day and said for sure they wanted it…in the end, no one showed up with a completed application and fee in hand – so here we are.

I can’t move until it’s rented, because I’ve got to be here to show it to potential renters. Moreover – once we rented our house out, we felt comfortable committing to a place in California – so now we have two monthly payments. Had we known that I’d be staying on here to rent the house…John could have stayed with friends/family during the ‘overlap’. This is a financial catastrophe – as we were hoping to use any overtime/extra pay to go towards our looming tax bill next year.

It’s all just so overwhelming. I’m overwhelmed. I’m frustrated and alone.

I guess I just needed to get that off my chest. I’ll be ok – it’ll be ok. The house will eventually rent and I will eventually get to see my husband again – but today, I’m just feeling sad. I hate taking steps backward.

Verbal Vomit – Getting it out there

Brandy — Mon, 21 Feb 2011 21:24:51 +0000

Things that have been on my mind that I want to write more about, but can’t seem to form the words:

The company John works for has reduced his pay and hours to the point that we can’t afford our bills, to put food on the table and my medical care.
We can’t afford health insurance that actually covers our medical needs – of which I have plenty. Instead, we pay $200 a month for coverage that only starts after we meet a $14000.00 deductible.
The job market sucks so badly – we’ve sent out well over 400 resumes to jobs all over the United States and John hasn’t had a single return phone call – although he has had a couple of “no thanks” emails.
After several months of watching my AST/ALT numbers rise, my Dr. finally decided to try a different medication – it costs $1435 every two weeks. We didn’t pay our mortgage in February in order to afford one two week course of treatment. I am starting week two this week and I go for labs on Tuesday. No one should ever have to decide between food on the table, a roof over your head and medical care – but that’s our position.
$1435 every two weeks is almost $500 more than what John brings home every two weeks, after the pay reductions and mandatory furlough days.
We don’t qualify for state assistance because John makes to much.
All we really want is a job with affordable benefits – that is the hardest part of this – we’re not looking for charity, a hand out or gifts – we just want a job where we can afford to pay our own bills.
If we can’t find a job in the Phoenix area, we’re going to have to move and that means paying back the first time home buyers tax credit – in full – next April. That’s a hard pill to swallow.

We are the ‘working poor’ – we can’t afford to stay here, can’t afford to move – we’re already making decisions about what bill not to pay, in order to get medical treatment and food on the table – often not at the same time.

I want to write a more coherent post – but I felt like I needed to purge everything at once and get it out there, so I could focus on what I want to focus on.

iPhone Data Plan with AT&T Wireless

Brandy — Wed, 03 Nov 2010 13:27:08 +0000

So, if you follow me on Twitter you’ve heard me rant about the recent HUGE increase in data usage I’ve experienced since October.

In June, when I upgraded my phone to the new iPhone 4, I was told I had to switch to one of the new data plans. After discussing my options with the rep at the AT&T store, he said that I’d only ever once (during a period of especially high usage, while I was hospitalized in a hospital without Wifi) gone over the limits on the lowest plan and that it made the most sense for me to switch to that plan from my current unlimited plan, which I could *not* keep when I switched phones, to their $15 a month 200 MB plan, so I did.

(Yes, I’ve since learned that this is incorrect – but there is nothing I can do about it now…)

For months, I blissfully used my service rarely even coming close to meeting or exceeding my data plan limits.

I admit, I had unusual usage in August, because I’d just started a new job and was using data services throughout the day, because I hadn’t yet been given the password for WiFi, but if you look at my usage, I rarely come close.

Then I start getting the text messages:

and

For the record – my billing cycle is the 24th through the 23rd.

I am totally dumbfounded, but I’ve decided I’m really going to watch my account and try to figure out what’s going on – why the sudden change in data, when I’ve not changed the way I use data at all.

I log in to my AT&T Wireless account yesterday and see this:

I haven’t gotten a text yet.

Here is what my usage looks like for this entire billing cycle – I’m noticing a lot of same minute, different hour transfers. Like on the 25th at 5:17, 8:17, 9:17 and 10:17.

I grabbed the 23rd (not part of the billing cycle) so you could see I went ALL the way back to the very first day, without leaving off the first few days.

I’d also like to point out – any of those dates that fall during the week after 7 PM really, really piss me off – because I’m at home (without exception) after 7 PM during the week and I have Wifi – which they note is ‘unlimited’ in their super frickin helpful text message – so I can’t figure out why, on the 25th, at 8:17, 9:17 and 10:17 (all times when I have Wifi coverage) I am making data transfers using my AT&T Data Plan.

So what am I doing to avoid additional overages with more than half of my billing cycle left? I’ve turned of 3G and I’ve turned off Cellular Data. It makes my Visual Voicemail unusable and it mostly makes my phone an iPod with calling capabilities – but I can’t figure this out and no one at AT&T seems to care.

Is anyone else out there having issues?

My earlier Tweet resulted in this message from AT&T via Twitter – we’ll see.

[ETA: When I asked the AT&T guy what info he'd need to investigate my issue, here was his reply: I will need you to provide info on the issue and I will need the wireless number, account name and last 4 of the social security number.

That's right folks - AT&T (if it truly is AT&T) wants me to give my account details to some random Twitter account? Really? You are trying to do brand damage control via Twitter and you don't have a direct number you can give out so you can deal with matters like this? You want me to give you my details?

Yeah, I think no.

Another AT&T Fail. Big time.]

Updated Post as of 4/19/2011: iPhone Data Plan with AT&T, an Update