February 25, 2013

You Bought WHAT??

source

Buyer's remorse.

It's a real thing.

I sometimes start having it before I even get out of a store. It drives Mark NUTS when he catches me eyeing the contents of our cart as we stand in line to check out. He knows I'm thinking, "Hmm, maybe we don't really need ALL of this."

I am a very careful shopper. I'm not a couponer, but I rarely pay for anything at full price and I'm a label/tag reader. I like to make sure I'm getting the best value for the money. This is something my mother taught me.

Do you know that grocery stores often try to trick you into thinking you're getting a good deal on something they've put on "sale", when in fact another size of the same product is actually a better value? True story. I catch them doing it all the time. But it's only because I take the time to check the labeling. Stores get away with doing this with everyone else who don't stop and really look.

Even with my uber practical and pragmatic shopper side, there have been purchases I've regretted, or I regretted my husband making. Mark is NOT as practical and pragmatic as I.

10 Things I Wish Hadn't Been Bought

1. We both regretted buying my FIL's Toyota Supra when it threw a rod which punched a hole through the engine block. Dealing with that was a nightmare of epic proportions.

2. Speaking of cars, although we didn't purchase it, a Buick we acquired was pretty much a silly thing we ended up just passing on to someone else.

3. Mark worked for EXPO Design Center for a few years before we moved to Washington. Where Home Depot will help you build your house, EXPO will help you decorate it. One day Mark decided to buy a whole bunch of high end lighting fixtures for super cheap. He figured he could sell them for a very nice profit. It never panned out, and we lugged those damn things around for YEARS.

4. My daughter's crib. She never slept in it. Total waste of money.

5. Stick-up lights. I've done this more than once, trying different ones that come out, because I need extra light EVERYWHERE, but they use too many batteries which need replacing too often. Better to just grab a flashlight.

6. One of the first edition Kindles. Both Mark and I thought it would be fantastic for me and my bad eyes. Not so much. Yeah, I could make the print as big as I wanted, but the contrast was terrible, so I still had to work too hard to read it. I very sadly packed it up and sent it back to Amazon. Now though, I have a Kindle Fire and I love it.

7. A Topsy Turvy tomato planter.

8. Bar stools with backs. This is something you do not want to do if you have little kids who will twist and swivel in them, banging the backs on the counter and gouging them all to hell.

9. Half of the scrapbooking supplies that are collecting dust in their organizational caddy.

10. The Umpqua brand Birthday Cake ice cream currently sitting in my freezer, because its deliciousness is calling to me.


Linked with Monday Listicles.

February 20, 2013

Don't Admire Me


Shortly after entering Mark's life I was hailed as his "personal savior".

It was flattering, and helped me feel like his family liked and accepted me. But it also undermined Mark's own efforts at getting his shit together.

When his kidneys failed and subsequently had his transplant, I was like a saint or something for standing by him, for staying and dealing with it all.

Sure, we weren't yet married and I could have said, "To hell with this crap, I don't have to take this  on!", and walked away.

But I had fallen in love with him. That love must have made me brave. I wasn't afraid back then.

While Mark was at his healthiest we got married and had our daughter, never once thinking the transplant would last only 6 years. Things weren't perfect, but he had done so well, seeming to have beaten all the odds. With a precedent like that, you have all the hope in the world.

We were crushed when the transplanted organs rejected and Mark went back to dialysis and insulin dependency. The wind sucked out of our sails and set us adrift.

Eleven years, relocation, another child, a house and two very big health scares later......it's hard to wrap our heads around everything we've been through.

Yes, I've managed to deal with it all. I've kept my chin up, pushed forward, held out hope and fell in love with my husband over and over again.

But it hasn't been pretty. There have been fights - ugly fights - things said that hit below the belt. Impatience. Selfishness. Tantrums. Not just from the children.

I still hear over and over, "I admire you." or "You handle it all so well. I don't think I could do as well as you have."

Don't get me wrong, it's good to hear that others think I'm doing a good job. Who wouldn't want to hear that?

On the other hand, sometimes I feel like a fraud. A fake.

Because a lot of the time, *I* feel like I'm holding it all together by a thread.

Also? What if, at some point, it breaks me?

Will you still admire me then? Or will I disappoint you?

I get angry. I get sad. I get disheartened. I get selfish. I get intolerant. I get insecure. I ball up my fists and stamp my feet.

I never "saved" Mark. I've just loved him. Loving him is really the easiest thing in all of it. He's loved me back and given me babies. It's not as if I've gotten nothing out of the deal.

So don't admire me. Don't put me on a pedestal. I'm just a girl who loves a boy who's sick. I'm just a girl doing her best with what she's given each day.


Linked with Pour Your Heart Out.

February 14, 2013

Link the Love!

As promised, here is your super special and shiny Valentine's Day link-up!




Hate Valentine's Day?
Love it?
Like to get crafty?
Who do you love?
What is your dream Valentine's gift?
__________

Valentine's Day is pretty hit or miss around here. What we do or don't do varies from year to year. This year I found something yummy for Mark and I to have for a late dinner (he will be at work until 7:00), and my dad is going to bring the kids tacos. I think that's about it.

It's pretty much just an excuse to have something special for dinner and eat chocolate!

And I may have gotten Mark a small gift.....

A mug with this picture and
"LOVE, forever" printed on it

So what about you? Tell me all about it!

February 12, 2013

What It's Like to be Visually Impaired

Perfect eyesight is measured at 20/20.

With corrective lenses, my vision is around 20/200. This means that I have to be no more than 20 feet away from something to see it, whereas someone with 20/20 vision can be 200 feet away and still see it. I can pretty much see only the big E on the eye chart clearly.

This is in one eye. My left eye is unable to see at all.

The powers that be call this "legally blind". The word "blind" in there at all can make one think totally blind. This is why I prefer to use the terms "visually impaired" or "low vision". It's not politically correct; these terms are simply more descriptive, or specific, for someone who is in between fully sighted and totally blind.

I have been asked if everything is just blurry for me, like out of focus. We've all seen blurry photos. My answer is, I guess so, but for me, I think it's more dirty, and smudged. I can't see straight. Haha, right? But seriously, straight lines do not look straight to me. I can use a level to straighten a picture on the wall, I'll know it's straight because the level says it is, but when I step back to look, it still looks crooked to me.

Here are great examples of what it's like to have some eye conditions. However, none of them are me. I don't even think any eye doctor who's treated me has given a name to the problems I've had.

source
This happened to me the first time the retina in my right eye detached.
It was very annoying.

My eyes have suffered from inflammation which led to retinal detachments. My eyes have been treated with steroid shots directly into the eye, vitrectomy and laser surgeries to reattach the retinas. My left eye went untreated for too long before I got to the right doctor, so his attempt at saving the vision in that eye didn't work. The retina in my right eye detached twice, I had two surgeries and my lens removed. My right eye has been stable since I was 19, except that a contact lens I was wearing for awhile scratched my cornea, and I deal with dry eye.

There is some scar tissue on my retina that I can actually see. Those are the "smudges" I mentioned before. A bit of the scar tissue is very close to the macula -- the very center of the retina -- and it is sort of tugging on my retina, causing it to pucker, which I believe is what causes my inability to see straight lines. There was some discussion on whether or not to try to remove the scar tissue, but because I tend to have an inflammatory response to surgery, we decided to leave well enough alone.

What does all that mean for what I can and can't see?

Well....

I searched high and low (if you can search high and low on the internet) for a photo that looked close to what I see. I couldn't find one so.....I attempted to mess with one of my own photos.

But it didn't work. So really all I can do is try to describe how I see.

Like I already said, my vision is dirty and smudged, and ragged around the edges. In one eye. The other is dark. During the day I do pretty well, but at night, forget about it. I should really use a white cane at night, that's how difficult it is for me to see in the dark. I don't use a cane, however, because I'm never out alone at night.

I feel like the world is closing in around me when I'm out at night. It can be quite disconcerting, in an out of control sort of way. When in a car at night, it feels like I'm in a tunnel. I cannot see anything but lights beyond the reach of the headlights of the car I am in. I would honestly be better off just closing my eyes.

Lighting is everything. I need a good amount of light in order to see my best. Natural light is awesome, but direct sunlight can be too bright. Double edged sword I guess. I have a special hate on for restaurants with "ambient" lighting. I think we should all be suspicious of this. Why don't they want us to see our food?

My glasses are tri-focals for far, close and closer. The "closer" lens is how I'm able to read and see the computer. Actually, I'm looking through the middle "close" lens as I type this because I can see what I'm typing well enough, without having to have my nose pressed up to the screen. Also helps me to not make my back and neck angry. I often marvel at how far back on their desks most people can perch their monitors AND lounge back in their chairs.

My sight loss happened to me so early in life that I really can't even remember what perfect vision is like. My mom asked if I see clearly in my dreams. Nope. But sometimes I do drive - slowly! Over the years I've worked as a church secretary, scrapbooked, I can knit, crochet and even take some decent photos. And now I blog! I appreciate so much being able to SEE my children's beautiful faces, as well as each and every sunset and big, fluffy cloud.

Not being able to drive is the biggest inconvenience of poor vision. For me that is. I have known others with sight loss who lost a whole lot more when their eyes betrayed them. We live in a very visual world so it can be extremely hard to adapt.

Thankfully, there are lots of gadgets and other things to help make up for what one cannot see. However, because it's been so many years since I became visually impaired, I can't say with any authority what all is available today. When I went to the Orientation Center for the Blind in Albany, CA back in 1994, I learned basic Braille, white cane travel (mobility), computer accessibility, how to cook blind and for some dumb reason, how to sew blind. I hated that. To be quite honest,the skill I still use most is what I learned from mobility training. Things like counting steps and paying attention to what my feet feel on the ground. Also north, south, east and west. One other thing is that I can pretty easily identify clothing and other items by feel.

I have an appointment one week from today with an ophthalmologist. I haven't seen one in about 10 years because I've been too nervous to see someone new, someone who isn't already familiar with my eyes. I desperately want new glasses, though, so I have to suck it up and get it taken care of. Wish me luck!

For the complete story on HOW I lost vision, go HERE.


February 7, 2013

Yesterday: A Post Script


Yesterday I posted about my conflicting feelings about how my life has unfolded. That I don't like to feel like life is hectic or busy, per se, but I also often feel held back and limited by my circumstances.

AFTER sharing this with you all, I saw my therapist, who explained what these kinds of feelings are: Ambivalence.

I had equated ambivalence with indifference until yesterday. The very last thing I feel is indifferent!
Ambivalence is a state of having simultaneous, conflicting feelings toward a person or thing.
I wish so much I had understood this before, so I wouldn't have spent so much time questioning myself and my feelings. Or feeling bad for them.

And on the same day I admit to the world that I sometimes feel like my life sucks, I click a link on Facebook and read:
Let go of the expectation that you have more than your fair share of crap to deal with. There are no shares. You don’t have a big pile of crap, you have life. Go live it.
From a blog post about how you can learn lessons about autism from The Princess Bride.

While I LOVE that movie, the post has absolutely nothing to do with me since I don't have an autistic child.

Yet it still spoke to me.

I just love that!

And I love how the Universe always helps me to learn the things I need to learn exactly when I need to. This is also a testament to the power of being open and expressing yourself. You just might get back something great.

February 6, 2013

This might not make sense...


My favorite online doctor friend Deborah Gilboa recently shared a blog post on one of her Facebook pages titled "Embracing My Inner Old Lady" that I could completely relate to.

The blogger, Adina, described herself:
My skirts have elastic bands and I refuse to wear anything that isn’t comfortable. I don’t like to clutter my days with too many activities. For instance if I have a doctors appointment, and I have carpool, I will tell my friend that I can’t meet her for coffee, because my day is filled up. 
Well paint me green and call me Kermit, it's like she's in my head!

Except, skirts? What are those? I don't have any. But if I did, they'd be just like hers.

I have a very good reason for not appreciating busy-ness. To me, all it does is cause stress. And because my husband's health problems can lead to so much upheaval, I kind of cherish the calm. I honestly do not understand why some people are always go, go, go, do, do, do.

In fact, it seems that whenever something more than regular, day-to-day life comes up, like say, the Holidays, we're lucky if we make it through without incident. It's very difficult for someone with a lot of medical issues to juggle to have their routine messed up. Keeping Mark as healthy as possible is quite the delicate balance.

I may not lead a hectic lifestyle, but I am rarely bored. Home, marriage, kids, friends, family, errands and appointments, hobbies, exercise, entertainment and blogging all fill up my time. Pretty sure I'd be hard-pressed to look around and not be able to find something to do.

I know this to be true and I swear I am very content with things as they are.

I think I feel held back, however. Like, I am happy with my lifestyle, but I also feel like I simply don't have a choice. I even had a dream the other night that, when I looked into the symbolism of what I dreamed, seemed to be expressing this exactly. That dream is the catalyst for this post. I've often thought about writing about this, but have had a hard time finding the right words.

You see, I have to be available for my family. Not only do I still have children who are too young to spend a lot of time unattended, but leaving Mark alone for very long.....well not only do I worry the entire time I'm away, but he himself seems to be insecure about it since last March.

I am a caregiver. A friend of mine described me as such recently and I was a little surprised. Hadn't thought about it that way before.

I don't mean to sound like some kind of martyr. That's not what I'm trying to say. I do get time alone, I do get to take care of myself (now) and do some fun things.

It's just....staying wrapped up in this cocoon is limiting, I guess. And it's not just the people who need me, but also my vision.

I feel like I try to take a step in whatever direction but am halted by some circumstance. And they are often things I can't do anything about. It can be very frustrating to feel thwarted all the time.

Lack of choice and lack of control. Two things people rail against so much in life. I fight not to let these things get to me. To work around them and make the best of each day.

And like I said, for the most part I am OK. I am used to it, have done and will continue to adapt. I have plenty to be happy about.

But if someone wants me to see an ophthalmologist and have my eyes dilated for the first time in 10 years, spend an hour in therapy, meet with my daughter's counselor and teachers AND go to a Girl Scout meeting all in one day....?

Ain't gonna happen.


Update: I posted a little more about this HERE.

Linked up with Pour Your Heart Out.

February 4, 2013

Purse Parts

Girls and their purses.

I'm kind of funny about the color of mine and the season it is. I just cannot carry a black purse in the spring and summer. Cannot do it! Like, April first is my cut off date for black purses.

I decided grey might work in any season (and I've been wearing a lot of grey) so I commissioned my bestie to knit me a grey purse for Christmas. What? I knew what I wanted so I asked for it. Problem is, she had to knit or crochet ALL THE THINGS for Christmas gifts so she didn't finish the strap of my purse. I'm still waiting.....sniff.

If you know me you know I too knit and crochet, so why didn't I just make myself a purse? Because my friend is BETTER than me. Truth. She also knows how to fiddle with fabric, which means my purse gets a lining, which is even better!

So what do I carry around in my purse? I'm glad you asked! Oh, you didn't ask? Well you should have, because what a woman carries in her purse says a lot about her.



10 Items In My Purse

1. Wallet - of course

2. Restaurant wet wipe - they come in handy

3. Lotion

4. Andes mints

5. Little magnifier

6. Chap stick

7. Pictures of my kids when they were little

8. Gift cards yet to spend

9. Small hairbrush

10. Angel HOPE worry stone

My good friend Carin gave this to me to be something to focus on when Mark was in the hospital.
I knew it was in my purse, but I had completely forgotten that HOPE was stamped on the back.
Which is the word I chose for 2013, and just added to my header.

There are a few other items, like keys, Purel and a pen, and of course I always slip my phone in. My husband and kids often ask me to carry things for them. Oh, and I tend to collect many a receipt, much to my dismay. I carry it all in the smallest purse possible. No giant mom bag for me!


Linked with Monday Listicles.

February 2, 2013

Weekend Why


The Superbowl is tomorrow!

Do you watch?

If so, WHY?

For the game, commercials, halftime, the junk food.....

All of it?

If you don't watch, WHY NOT?

Football is the only sport my husband watches consistently. We moved in together during football season so I had a quick decision to make:

Get into it too, or be a "football widow".

Since it was early in our relationship and I still loved spending every possible second with him, I opted to get to know the game.

I still like football and still follow the seasons, but I must admit I don't pay as much attention as I used to.

But the Superbowl? That's always fun!

Well, except when the Patriots are there. I just don't trust them ever since their coach was caught cheating. I don't like the Steelers either. Buncha crybabies. Also? They STOLE the Superbowl win from the Seahawks seven years ago!

But I digress.

So, WHY or WHY NOT do you, or do you not, watch the Superbowl?
(And who are you rooting for this year? Ravens here.)

Superbowl.com

February 1, 2013

Lingering Anger


One month from today will be one year since Mark's arrhythmia near death experience.

And I gotta say, there is still some unresolved anger regarding how everything went down.

Things should not have happened the way they did, and it's something that continues to bug us.

There have been only a couple of times over the years of dealing with Mark's health problems when we felt like he was receiving inadequate care. Like, his doctor(s) was taking a half-assed approach, not dotting all the Is or crossing all the Ts.

Unfortunately, we feel that the episode last March was one of those times.

You know how unsettling it can be when you discover that someone isn't who you thought they were? That you made an error in judgement, a mistake in trusting them? It rattles you, makes you feel unsure about YOURSELF. Makes it difficult to know who you can trust.

Mark's cardiologist did that to us. He had been Mark's doctor for over eight years prior to the arrhythmia. He had seen Mark through angiograms, stents, two heart attacks and bypass. 'Course, knowing what I know now, I wonder if he tried a little too hard to avoid bypass....

I feel like I'm being vague, so here's the thing: We are still angry at Mark's former cardiologist for seemingly writing him off. For basically refusing to call an arrhythmia specialist into Mark's hospital room to physically SEE him, pour over his chart and make a first-hand diagnosis.

He spoke with an electrophysiologist over the phone only. That guy was merely fed info from Mark's doctor.

And Mark's cardiologist gave us the distinct impression that he had no hope for Mark. He gave up.

I can understand how that could be an easy thing to do. When you list out all of Mark's problems, it is overwhelming and looks logically like he shouldn't be able to survive so much.

It honestly wasn't hard to convince Mark's entire family that he was at death's door.

But they were wrong. Not just wrong that Mark wasn't going to die yet, but wrong about his diagnosis!

If it hadn't been for Mark's plucky and steadfast kidney doctor (nephrologist), we may have never known the truth and Mark may not have received the correct treatment, which very well could have led to his death.

That is not dramatics; it is the truth. Mark's cardiologist diagnosed him with Atrial Fibrillation when it was actually Ventricular Tachycardia, which is much more serious. When we finally got Mark to an electrophysiologist, he told us that if he had treated Mark in the hospital, he would not have left without an implantable defibrillator, and his walking around without one was very dangerous.

Two weeks before meeting the specialist we had gone to see Mark's regular cardiologist for a post-hospital follow-up. I asked him point blank if Mark's problem could possibly be anything else. He gave me a definitive NO. But when Mark's shiny new electrophysiologist called the cardiologist at my tearful request (because I was hoping to get everyone on the same page), he said, "Oh yeah, I suspected V-tach all along."

WHAT?? You lying liar!

Up until then I had been trying to give him the benefit of the doubt, while Mark had already decided this guy just didn't care about him anymore. I was all, "No, that can't be. How can a doctor do that?"


Apparently they can. Not only that, but so did other doctors in that hospital last March. It was a bit insane. They saved his life the first night he was there, but then endangered it with "hospital acquired pneumonia", and continued to endanger his life by not calling in a specialist. Mark had to be intubated twice because his heart wasn't responding to treatment because they weren't treating the right problem!

Because of all of this, we had to talk about hospice and other end-of-life issues. Mark even signed a DNR at one point because he thought he didn't want to be shocked again! It was a nightmare.

All of which could have been avoided if the necessary specialist had been called to Mark's bedside to make a completely informed diagnosis. Arrhythmia is a tricky thing. Why the cardiologist thought a phone consult was good enough I will never understand.

It is any wonder Mark did survive it. I give credit to his nephrologist for stepping up to advocate for Mark when I was too bewildered to. Everyone who loves him flocked to Mark's side and buoyed him, giving him strength for the fight. And he, Mark himself, decided he wasn't done. All the doctors treating him for those 13 days really did was fuck up.

It is so disheartening to feel this way, to feel like the next time Mark has to be hospitalized I will have to be hyper vigilant in making sure the doctors are doing their best for him. It is already exhausting to deal with a hospitalization, let alone have to also question everything you're told. And to not know if you can trust these people who have your loved one's life in their hands? Awful.

I know Mark has myriad problems. I get how taking one look at his chart could overwhelm a doctor or nurse. But dammit, you don't just throw your hands up and decide he's a goner. You fight for his life until he takes his last breath. You fight for his family and children. You sure as hell don't play God, deciding you know what's best all on your own. If you're not 100% sure of a diagnosis, you seek another opinion. And not just over the phone. A person's life is worth more than an obligatory phone call.

Now I know to ask for more, to demand it if I have to. I hope anyone who reads this will remember it, and do the same for their loved one.