I just wanted to make a post to wish my hubby John a very happy first wedding anniversary. I love you baby! Thanks for putting up with me 🙂
Does the universe give you more than you can handle?
I’ve been so scared and stressed out lately I’m not really sure where to turn. I know to really understand why, you all will need a bit of backstory, on me, and my family, or at least those who haven’t been following my blog for quite some time now will.
I have been disabled almost 15 years now. I also suffer from social anxiety disorder and PTSD. Trying to keep myself calm and optimistic isn’t easy even on a good day, but when I’m stressed out like this it’s nearly impossible. Thankfully I have a hubby who is wonderfully understanding when I’m having one of my bad days.
As some of you know my husband is severely hearing impaired, and has been since childhood. He first lost use of one ear, when he was only 12 or 13, but since his late 20s, he has also slowly been losing the use of the second ear also. Now he can only hear a little, and only with the help of a hearing aid, which we presently can’t afford, because the medical insurance we have will not pay for it.
After two years of trying, and waiting a year and a half for an appeal hearing with a disability judge, he was finally approved for SSDI. I wish this were the cause for joy it seemed to be at first, but unfortunately it may actually leave us further behind financially than what we already are.
See…there is thing thing they don’t like to tell people about called the “Marriage Penalty.”
Since he and I chose to get married last August, before our son was born, instead of just continuing to live together, there will be some penalties to our income, separately and collectively.
First of all…
Even though his new income will be lower than the income I was receiving, I will still lose 80% of my disability check, because his income counts against mine dollar for dollar. On top of that insult, we now have to pay $150 a month out of his for medicare as well, which leaves us even further behind than we were before. They also are telling me our benefits will not be high enough for our son to qualify for any dependent benefits of his own. And if that were not enough, we also discovered that any financial help relatives have given us over the last couple of years, to keep us from losing our home, also counts against us as income, which erases most of the back pay we would have received had they not helped us.
Please tell me…how are people supposed to survive all of this?
Basically what all of this means, is unless our circumstances change, my family and I will forever be doomed to a state of complete poverty. I honestly am not sure how to handle all of this, or what to do since I found out all of this. Since the meeting at social security on Friday, it’s all I can do not to cry. It’s hard to sleep because I can’t stop worrying about just what is going to happen to us.
Rent for even a modest one bedroom apartment in a bad part of town is even more than our entire income now. Will we always have to live with roommates? Are we going to be able to give our son all the things he needs now? I’m worrying myself sick here trying to think of what I can do to make it better. We can’t even apply for welfare, because it counts dollar for dollar against what we are already getting.
How is this a hand up? I don’t understand it…
Would it make sense to look into going back to school, when even people with degrees are working at retail jobs? How would it make sense to take out loans for classes I may not be able to get a job good enough to be able to repay? Some people would tell us to just start selling everything, but really we don’t own much. We have a lot of books, and furniture that came from yard sales. I really don’t think we have much anyone would really be interested in buying.
Why am I venting here? Probably because I don’t have anywhere else to vent to.
Every time I read articles about the poor and the disabled, people in the comments section write such cruel things. We are not lazy, we are not faking, we surely aren’t eating gourmet meals, and driving fancy cars. We don’t own a car at all. We don’t use drugs, we don’t drink, we don’t smoke, and we surely don’t waste our money at a casino or strip club. I hate being stereotyped, judged, and made a joke of.
Is it wrong of me to just want to be able to afford a home of my own, and not have to have my husband, son and I sleeping in one room of an over-crowded apartment? Is it wrong of me to want to be able to provide my son what he needs, even if I won’t be able to give him everything he wants? Is it wrong to wish I didn’t have to worry about the future, and what would happen to us if the rent goes up again, or an emergency came up that we have no way of paying for?
Optimism eludes me right now…
Worry just keeps my brain going in the same circles…
This post is in response to the Daily Prompt for July 6th, 2013.
I don’t remember a time when I have been comfortable being me. For years I’ve never even liked the sound of my real name. As a kid I mostly heard my name in a mocking manner. As time went on, I was afraid to tell most people my name, afraid of what they had already heard about me from other people. I’d wonder how long it would take before they would bully me too like the others, it usually didn’t take long.
That was one of the hardest things about growing up in a small town. I spent most of my childhood and teenage years feeling like a pariah and a scapegoat. Not even my own parents seemed to think good things of me. The most hurtful thing is, that quite the opposite, they seemed all too ready to believe every rumor. I wanted so badly to have friends, but after awhile, I turned inward into my own world and just gave up trying.
All of what happened lead me down a dark road, and to some hard times, too many to really speak of. Sometimes when you have always felt starved for affection, you seek it out, and you don’t always realize the people offering it don’t have your best interests at heart. You find out later they only pretended to care, and you were just being used. There were times in my life I stayed in bad situations far longer than I should have, simply because I was afraid to be alone again. Alone was far too painful, and far too familiar. Hindsight really is a lot clearer than what your heart wants to see, and what your mind wants to believe.
Time’s gone on, I’ve gotten older. I met someone and left that small town, but a lot of the insecurity remains. It was almost a relief to change to my married name, and hope I would finally, hopefully leave the old me behind me. I still struggle with issues in my present because of the past. I find it hard to make new friends, without assuming right away people aren’t going to like me. It’s hard for me to get close to people, and trust them. When my husband and I have disagreements, I have to ask myself if I’m really upset at him, or at something that happened years ago he had nothing to do with.
I am so used to being alone, doing everything alone, and not having anyone, outside the written word to talk to. Sometimes I wonder if I will ever outgrow this fear, and step out from behind my wall. I hope I can, but it’s hard, when being inside your shell is the only world you’ve ever known how to live in.
Today was Thor’s 6 month checkup, which came a couple of weeks late because we had to reschedule it. The doctor seemed rather pleased with him, and even joked that we must be feeding him MiracleGro instead of formula. She swears he grows by leaps and bounds every time she sees him. I can completely see why she says that. Thor is 30 inches tall and 18 1/2 pounds now at 6 1/2 months old, which is off the charts on their growth chart. Most babies don’t grow as big has he has until they are at least a year old.
She also seemed happy with his development so far, she gave him some tummy time and watched him roll around and reach for everything. She said to help him practice sitting up a little more, and to give him lots of time on the floor on a blanket so he could start working on scooting and crawling.
On a side note, she’s referring us to a genetics doctor, not because she thinks anything is wrong with him presently, but because we have discovered that the cause of my husband’s deafness may be a congenital defect. As Thor gets a little bigger he will have to be screened for the same inner ear defect, for which sadly there is no treatment or cure. Thankfully it’s only at most a 50/50 shot of him having it at most, and if he does it just means he will likely slowly lose his hearing as he gets older, when it will happen, or to what extent, there’s no way to tell.
This condition can also be aggravated by head trauma, so sadly no contact sports for our little tough guy until we know for sure what we are dealing with. Unfortunately at the present time he is still far too young to even be properly screened for the condition. His hearing for now is extremely good, so the doctor can’t see doing the tests until he is old enough to understand what is happening, not to mention he is still small enough that he may still be far too little for the scans to see clearly.
So far so good though, now we just have to get through the post-immunization grumpiness. Thankfully he won’t need any more shots until he is a year old. That enough is reason to celebrate in my opinion.
Oh dear lord, someone give me earplugs…
It’s time for my husband’s weekly internet radio broadcast. While I usually like a lot of what he plays, this week is a definite stinkbomb. I don’t know who this band or singer is but I wish this droning, off key, monotone, barritone would stop already. Ick! Someone make it stop. But nope I still have another hour left to listen to it.
On a lighter note, the weather here was beautiful today. We put the baby in the stroller and took a nice long walk. We did discover that short of the Giant Eagle here, absolutely nothing seems to be open on a Sunday afternoon. Then again they tend to roll up the sidewalks on our and of town around 6 or 7 in the evening during the week, so I really shouldn’t be surprised.
John insisted on hanging a bunch of tapestries on the wall of the bedroom today. The longer we are married, the more I realize I’ve married a hippie. John is anything but normal, but really that’s one of the things I like about him, even if parts of his not so normalness do kinda get to me sometimes. I am sure I am no picnic to be married to on some days either. I think one of the reasons we do get along so well, is that we both are willing to just let each other be our weird little selves. Even if some things about him drive me batty, I’m still really really happy that my hubby is anything but normal.
If the men from my past were normal, I will gladly take my weirdo hippie any day of the week..!
And the music drones on, and here I sit a captive audience…
Sorry for the little disappearing act, I seem to be good at those. This week was full of appointments and places to go. The good news is my insurance is letting me have the treatments for my back again, at least for a little while, so I am in a lot less pain now. I also finally got the correct lenses for my new glasses. They are taking some getting used to compared to the old pair, but so far they aren’t too bad.
We also went to the first meeting for our new writer’s group and amazingly there were three other people that came. The group is only going to meet once a month for now, on the first Thursday of the month at the Avalon library, but it’s a start. In other writing related news I signed up for the Camp NaNoWriMo for April, and hopefully will get some writing done. I am crossing my fingers but not holding my breath on that one.
Today we got a lot of housework done, and we rearranged our bedroom. My hubby did most of the heavy lifting part, but organizing is gonna take a little longer. There is at least a lot more room to move around in there now, and hopefully having the shelves of the changing table to arrange baby clothes on until we can get him his own dresser will help us out a little as far as storage space goes, seeing as he has definitely outgrown the little plastic drawer sets we were keeping them in before.
The hardest part of having roommates, is not really having enough room for everyone’s things in this house. John, Thor, and I share one small bedroom here, and somehow we have crammed into it, our queen sized bed, the crib, two book shelves, a changing table we are using as a dresser, a file cabinet that doubles as a nightstand and a laundry hamper.
Clutter annoys me to no end, but with a roommate that is a borderline hoarder, it’s staring me in the face no matter where I look here. I try really hard to make sure at least the areas I have control of stay as organized as they can be under the circumstances. I guess it’s just a side effect of coming from a family of packrats who rarely throw anything away. I can only look at the mess and clutter so long and it starts to drive me crazy anymore. I was an adult before I knew a house looking like that wasn’t normal, and now I get really embarrassed when anyone comes over and the house isn’t in order. Don’t get me wrong, the place doesn’t have to be spotless, just somewhat remotely clean and put together.
For a long time after the baby was born I wasn’t feeling well enough to do much of anything around here. If things are getting to me this much, I must be starting to feel better. I am tired of sitting around, I want to go places and do things. I want to talk to people, and see what there is to do around here. Maybe it’s just cabin fever talking, and I’m ready for it to warm up and winter to finally be over. I wanna get out of the house, take the baby with me and put some serious miles on that stroller.
Welcome to my new and hopefully improved blog. Yes it is hard letting go of the tye dye, but this one is so much easier on my poor eyes when it comes to reading. I’m sure I am not the only one who finds the white backgrounds on most of the blog templates to be downright blinding sometimes.
I’ve always had very light sensitive eyes, and am not a fan of really brightly sunny days because of it. I have to keep dark sunglasses on just to function when there isn’t enough cloud cover. Bright snowy winter days are the worst, and snow blindness isn’t fun.
So now you all know the main reason for the switch, not to mention, I really think this new theme looks nifty 🙂
The family and I had a long day out today up to Bellevue. We visited the eye doctor to see what is up wonky with my new glasses, and I have to go back tomorrow to have them rechecked. We visited the library book sale and picked up some new books, which is always enjoyable. All the rain we had today did put a little bit of a damper on it, but fortunately the bonnet on Thor’s stroller kept him nice and dry.
John and I are both firm believers in keeping lots of books around, and our son will never have a shortage of things to read. We probably have a few thousand books in this apartment already, and we are slowly building up a children’s book collection with him in mind. More books and little or no tv for him is definitely our plan when it comes to raising him.
Hopefully it will work out well that way. I’ve seen far too many kids who spend way too much time with the electronic babysitter for my comfort. It’s not to say I am against letting kids watch tv at all, but I do believe in letting them watch it in limited amounts. I am also a firm believer that their tv viewing should be limited to shows with educational value or other redeeming qualities. Most kids shows nowadays seem to be materialistic utter nonsense.
There isn’t even much my husband and I find worth watching anymore, outside of maybe Mythbusters and some good documentaries and britcoms on PBS. We no longer even keep cable, and just buy seasons of shows we like on itunes, or stream them online. About the only thing we miss about cable is Food Network, and we subscribe to the magazine so that’s almost just as good, and far easier to refer back to without having to set a DVR. (which I would have no clue how to do anyway, but that is another story for another day…)
I make myself sound like such an old fart when I talk about the past, even though I’ve barely cracked middle age. A lot of things in this world have surely changed, and it seems they are changing more and faster every day. I don’t know when the things of this world got as “disposable” as people nowadays seem to believe that they are. Life didn’t seem to be like that in another time that I remember. Maybe that’s just another thing that’s changed.
I can remember being a small kid, and now I look back on everything I always thought I wanted to be, and what seemed to be important then. I don’t ever remember a time when I didn’t want to grow up and be a mom. I used to dream of being a famous singer, or a famous writer. I guess I still do dream of the singer and writer part, but sadly anymore you have a snowballs chance of getting to sing unless you are a size 0, barely outta high school and have the “look” the record execs are looking for.
When did I kinda give up on my dreams? Maybe it was as I got a little older and teachers and other people told me that only the most beautiful and the best deserved to do those things. I don’t know why I let them make me feel so unworthy, but I did, and to this day I still struggle with it. Maybe it was when my mom told me that if I couldn’t make a living at it, it wasn’t worth doing and I would be an idiot for trying. Dreaming was going to get me nowhere in life. That stung, those words still hurt.
Today I only sing with the radio, and as many awards and compliments as I’ve ever gotten for my singing, I’m still so self-conscious that my husband has heard me sing only once in the almost two years we’ve been together. As much as I dream of singing, I know no band out there wants a 40 something slightly overweight soccer mom at the mic. Maybe I have to accept that dream is one who’s time has passed.
Writing is something I still dabble with, but I’ve somewhat almost given up on as well. I’ve written 3 complete novels and several partial ones now, but no one seems to want to read anything I’ve written. My mom still believes it’s a waste of time, and my husband only seems to beat around the bush and come up with reasons not to when I ask him. It almost feels pointless sometimes to write all these things if no one will ever read them. Why do I keep doing it? Maybe because I have to. Maybe getting everything down on “paper” is the only way I know to let out everything I can’t say otherwise.
Maybe what I thought I wanted to be is still who I want to be after all.
It’s been an interesting last few days in the news. There’s nothing like rocks raining down from the sky to remind you of just how not in control of the universe you are. People being sick around here hasn’t done much for my sense of control or my confidence in things going remotely according to plan either.
John’s illness went from a bad cold to pneumonia, which thankfully he’s already finished the medicine for, and he seems to be improving even if slowly. The baby now has a cold, but so far seems to be doing ok. I am hoping I am not going to come down with this, and maybe this is just them catching the cold I had a couple of weeks ago. I am not holding my breath on this though. I really really don’t want another cold when I just got rid of the other.
Having to be the one doing all the shopping and errands is wearing me out badly. Thankfully the baby seems to be in fairly good spirits even with his cold, so that makes things easier than they could be otherwise. I would like to sit down and eat something resembling a full meal, or at least one that consists of more than a glass of milk, or a few bites of hummus or cottage cheese. I have no idea why, but the thought of green beans with butter and salt sounds so completely lovely right now. I must be delusional.
On the other hand…I could really use a fried egg sandwich with grape jelly too. Who’s bringing the waffles?
I haven’t written much these last few days because the hubby has been down sick. At first we thought he just had a bad cold, but after a week of being sick already, he suddenly began running a fever after not having one before. After a trip to the hospital Sunday morning he was diagnosed with pneumonia. The only good news is the doctor thinks he most likely isn’t contagious. With a baby in the house this is excellent news.
Thor has of course been quite clingy and grumpy through all of this. I know he probably knows something has been wrong with his daddy even if he isn’t old enough to understand what it is. After two days of antibiotics John is already doing much better, and hopefully he will be over it soon. I just hope no one else comes down sick.
It’s definitely been hard being the one having to do all the running around here. I had to do all the errands yesterday, and the grocery shopping. It normally wouldn’t be much of an issue if you owned a vehicle, but we don’t. The grocery store is just over a quarter mile away, and while the walk down there isn’t bad, the way home from there is all up a very big hill. The climb up isn’t bad empty handed, but with a few bags of groceries it’s exhausting. I know when I have done it in the past I have to stop every block just to catch my breath and rest.
I’m sitting here enjoying a moment of quiet while the baby is in the swing and entertained for the time being. I feel exhausted. I don’t sleep well by myself, and John has been camped out the last several nights on the sofa because its easier for him to sleep sitting all propped up. Hopefully if the baby allows I will be able to catch a nap later. I am not holding my breath.
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