Wednesday, May 17, 2017

The Mom Thing

I honestly felt better after ranting last week, so I'm back. Today's post is more of a lament. Last year I skipped all the kids' performances and events because of my concussion stuff because I was convinced I couldn't handle them, because I knew the pain would be excruciating, and because I knew the days after would be long and arduous in recovery.

This year, though, the mom guilt was just too great.

So I've been going. Even though it's awful. Even though it's miserable.

Even though it's the most exquisite torture you can ever imagine.

There's my darling, up on stage, performing her little heart out. Singing her solo. Doing amazing. Sounding awesome.

There's her mother, in the audience, cringing at every clap and cheer, at the boom of the mic, the crescendo, etc. Wishing I had something, anything that could block out the noise. I stumble out at the end of it all blindly, like a drunken sailor at the end of a wild night, looking for a hole to crawl into to sleep it off.

This is what mothers do.

And sometimes it totally sucks. My girls will never know how much it costs me to sit in the audience and hear them sing. How much it physically hurts. But how could I miss it? Because I know how much it hurts them when I sit home and don't attend their concerts. I've seen it, all last year. They'd tell me it was okay because that's what was expected of them. And they tried hard to be okay with it. Philosophical about it.  But it mattered. It's not fair. It's not right. It's not their fault I'm going through this, that I've got this problem. And I'm tired of making them suffer for it.

Honestly, I'm tired of all of it. The headaches, the sensitivity to noise, how the crowds make me physically ill with their talking and clapping and cheering. How even plugging my ears does nothing to relieve the misery.

And then the next day when I sleep until noon to try and recover, and then feel thick headed and groggy and still try to get things done.

Because it's a mom thing, I guess.

Sunday, May 7, 2017

Because

I'm here because I haven't got anywhere else to rant, and I really, really need to rant. This post is about me, so if you don't want to hear it, don't read it. Nobody's making you.

It's been a hard month. Knowing I've got a clot sitting under my IVC filter has done nothing for my stress levels, as you can imagine. Made me feel like a ticking time bomb. What if the filter fails? What if I get more clots and clog up the area around the filter? Logic says the blood thinners I'm taking are going to break up that clot, but how long is that going to take? I mean, I was on blood thinners when that clot formed. What does this mean for the rest of my life? My quality of life?

Am I going to drop dead randomly at any given point in the future?

So, yeah, stress levels have been high. Anxiety has been high. And I feel like I have to hide it. That nobody wants to hear it. I have to be cheerful. Can't scare the kids. Bryan's got enough going on. He doesn't want to hear it, doesn't need more on his plate. I honestly feel like we can't talk about this. Every time we start to tread in this direction things get dicey. So, no, taboo subject.

Possibly the biggest thing in my life, and I can't talk to anyone. WTH?

And, naturally, we can't stop there. Let's pile on, you know, as life does. The twins are graduating--which is fabulous and exciting. But also full of stress. I can't even tell you all the last minute expenses we've had to shell out this year. Let's not forget our only income right now is Bryan's job at Taco Bell. You heard me. A family of six living off a Taco Bell income. How, you ask? God's grace. And these stupid expenses keep cropping up. The truck broke down. We should plan for stuff like that, but how? We barely cover living expenses, how do we squirrel anything away? Daniel had a school trip to the zoo. Super cool, they were going behind the scenes and seeing how things work. But the teacher planned to go to a restaurant for breakfast and then fast food for lunch. So my son spent more than $35 on food. That might not seem like much to you, but it is to us. Jeffrey went to State with his track team. Super exciting! Except he's not hotel savvy and didn't know they were checking out that last day. He managed to get his clothes out of lost and found, but they threw away his retainer. That's $150 we have to come up with right away, because we don't want his teeth to shift before we can replace it.

How are we going to come up with that?

Do you have any idea how I feel? Crippled, stuck at home, trying to contribute something--anything--to my family? My Etsy store doesn't sell. Nobody knows it's there. I've got stacks of aprons sitting here at home getting permanent creases because I'm invisible online. I'd say, generously, 100 people or less are aware of my Etsy store and/or that I have a product to sell. And most of them have already purchased. I've already had a few repeat customers.

I'm invisible.

And let's not forget my books. Ten titles published, sitting in cyberspace with the millions of other titles, invisible to readers, lost in the shuffle. They don't sell. The few attempts at marketing have been dismal failures. As a published author I don't exist.

In a time when I need to be noticed most, nobody knows I'm there. Nobody cares.

This probably sounds like one giant pity party, but I can't help it. I feel useless. I'm paralyzed by anxiety. For months now I haven't been able to write a word. I've had tons of fabulous ideas, and time to write, but when I set everything up to write I freeze. It's unbelievably frustrating. And it just fuels my feelings of inadequacy and uselessness to my family. In a time when we really need me to be a source of income, I'm failing.

My husband doesn't want to hear this either. He gets so bent out of shape when I rant about how I'm not contributing, about how I feel useless and inadequate. But I do. These are legitimate feelings. They hurt me. They're hard, horrible feelings. I can't will them away. I'm drowning in them.

I keep things light on social media because my personal account is connected to both my apron account and my author account. And, let's face it, nobody wants to buy from someone who's this pathetic. If I posted this stuff people would stop following me. There's a line between being brave about your struggles and openly admitting you're pathetic, poor, and are begging for business because you need money. People don't want to hear about money. It's still taboo, still an ugly word. They don't want to be reminded it's a fact of life, a necessary part of our existence in this world.

Well, guess what? It is. I have to sell 6 aprons to get my son his retainer. And that's just the tip of what we need. I'm pissed off, and I feel like a failure, and I hate it. But I can't just sit on my hands and do nothing. When I got out of the hospital last October, Bryan didn't even have a job. I had apron orders sitting, waiting for me to fill. The first day I felt like I could start sewing, I started filling those orders. A very good friend helped us cut some aprons out, and in November and the first part of December I made aprons and filled orders, and made enough money to almost pay our bills during that time. Then Bryan got his job, and just like that, the orders dried up. I continued sewing through the month of December, but didn't sell any of the Christmas aprons I made.

You and I both know what a story like that signifies. You know that's the hand of God working in my life. He didn't help me while I did nothing. He helped me while I worked. So I'm going to apply that same principle again. At least, to the best of my physical ability. I still don't know how to solve the writing thing. Or the anxiety thing. I know the obvious answer is talk to someone. Therapy would be ideal, but I don't see that as an option right now with our situation.

So, for now, I'm going to apply the old stand by. Get on your knees and pray, then get on your feet and work. 

I'm tired of feeling useless. I'm tired of feeling like I don't contribute, like what I do counts for nothing. So if you read this, and see my store links or my book links, please give me a shout out. You never know what might come of it. And thanks for listening.

Friday, April 7, 2017

That Could Have Gone Better

This hasn't exactly been a banner week. I've had better. I've had much, much worse, but I've had better. Let's just say I'm glad to be sitting at home today.

This past weekend was General Conference, which is always fantastic. I couldn't help compare it with last General Conference (Oct 2016), which I spent in the hospital, and, to be honest, didn't really get to participate much. I think we got a couple of talks off my mom's phone. I was recovering from the surgery they did to remove the giant blood clots in my leg, and said leg was still the size of a tree trunk and extremely uncomfortable.

So I was glad to be home and enjoying conference with my family, but I was also packing and getting ready for another surgical procedure. This time they were going to remove the IVC filter in my vein, the one they'd placed 6 months ago to keep any clots that might break free from going to my heart or lungs and potentially killing me.

The idea here is I'd been scanned and clot-free (in my leg) for 6 months, I'd been on blood thinners for 6 months, so it was time to remove the filter and take me off blood thinners. My DVT in Sept was caused by an anatomical defect that had been repaired, and there wasn't any real reason to expect that it would repeat. Right?

Right??

Because of the lingering effects of my head injury (post concussion syndrome), car rides are a huge pain, so Bryan wanted to take me up to OKC Sun evening and stay the night at a hotel rather than get me up at 4am Monday and make the drive so I could be at the surgery center by 7:30am. I didn't argue hard. We stopped by the church on the way up because the bishop had asked to speak to us about something that turned out to be a big something that wasn't good news, and kind of devastating to my mother heart. It wasn't so much "why is this happening to me" as "I'm just so, so tired, Lord" and I just broke down crying. If you've been on this blog for any period of time you know that we've been slogging uphill for quite a while. It's exhausting. I need a ledge, a plateau. I need a place to catch my breath for a minute.

I didn't get one.

That was Sunday. Monday we went in for the procedure, and they injected the dye to take images to make sure there wasn't a clot (which is standard procedure before removing the filter) and they found one. No kidding. Sitting under my filter is a clot. In the 6 months since my surgery drama my body had formed another clot and it had broken free and headed straight for my lungs or heart. The only thing that saved my life was that tiny IVC filter the doctors had placed in its path.

At first I was devastated. Another clot. I started to cry right there in the procedure room. I wanted to be getting better and just couldn't stand the idea of another setback. The filter is there for good now. The blood thinner regimen is likely a forever thing, and the side effects are literal hell. Plus having the knowledge that a blood clot is sitting right under that filter makes me feel like a ticking time bomb. What if the filter fails? What if more clots form and push against the filter? At some point one might slip past it. I feel like my life is constantly on the line now. It's so, so scary I can't even tell you.

After the initial feelings began to subside, I realized the filter had already saved my life. There was some comfort there. There's no denying my condition isn't serious, but I'm still here.

Tuesday I saw my hematologist, and we talked more about the surgeon's findings. Yes, the blood thinners are likely a forever thing. Surgeon wants to see me again in 3 months. He's probably going to scan me and see if the clot is still there or if the blood thinners have started breaking it down. Or if it's worse. My hematologist wants to see me after that. He talked about the possibility of more clots forming and crowding the filter, of clots forming in other parts of my body. If that happens there will be swelling and discomfort. It's not a fun prognosis. Not a fun long term outlook. These things may not happen. I'd like to think they're less likely if I get my weight down and get more active.

Which brings me to Wednesday. That's the day I met my new neurologist. Despite all my misgivings, despite the way I've been treated by neurologists in the past, I like him. His staff was nice and nobody treated me like I was faking or exaggerating my condition. I think part of that was the fact that it's no longer a worker's comp case. A patient gains more credibility when it's been 20 months and they're still there going, "Hey, I'm still in pain. My life is still upside down. Can you help me? And no, I don't want narcotics. Not only don't they help, they cause more issues." Get this, my new Dr is a board certified HEADACHE SPECIALIST. Seems like I should have had one of those all along, right??

So, there was a silver lining in the week. He recommended injections. Yeah, you read that right. Injections right into the head, just under the skin. They are supposed to last up to a month. It sounds kind of scary, to be honest, but after 20 months of constant, daily pain, I think I'm willing to risk it. I've forgotten what it's like not to have a headache.

Thursday I was looking forward to having a day at home. I had some church things to do and I'd been out every day that week so far and wanted a rest. No such luck. I woke up covered in blood. Remember Monday? My botched procedure? They'd still started, they'd still opened up my neck at the vein and injected the dye so they could check for the clot they ended up finding. Well, the incision site opened up. I bled through my bandage, all over my nightgown, and into my hair. I took the bandage off and squirted blood down my chest. It soaked the gauze pad I held to it. Because of the location (at the vein) I didn't have the leverage to hold enough pressure on it to stop the bleeding. I was home alone. So I texted Bryan. "My neck is bleeding. I'm covered in blood." He called me. Ended up turning around and coming home to help me. He called in to work to let them know he was taking me to the ER to get help.

All in all I got the help I needed but because of the circumstances I left the house without taking any of my meds. It was 3pm before I took anything for my headache, so I was majorly out of sorts yesterday evening. Just exhausted and hurting. They CT scanned my neck to make sure everything under the surface was okay, and it is, and did a purse string stitch to close up the incision. I'm going to have a lovely scar but I don't even care. I just needed to stop bleeding. I guess I'll wear a pretty scarf for Easter so I don't scare small children.

It's Friday now, and I get to be home today. Yay, me. Gotta say, I'm glad to see the end of this week. A friend posted on Facebook that we do a lot of damage to ourselves when we focus on our troubles, and it's better to focus outward. It's healthier. We can maintain a more positive outlook and focus. And we can help others.

She's not wrong. Obviously I have to add some self care in there, but if I focused on what's wrong with me, or the fact that I could die at any given time--or a blood clot could lead to a stroke, etc--I could revert to a very, very dark place. That's not going to help anyone, least of all myself, my family, or the people I love. I refuse to live in fear. For whatever time I have left, because it could honestly be decades. I'm not going to live in shadow.

Saturday, February 25, 2017

On a Happier Note

This blog really needs a more upbeat post, don't you think? How about this?

This week I went back to the doctor because I've been experiencing some strange sensations in my leg--specifically the back of my knee and the back of my thigh. And I won't deny I was nervous. We've spent since the week before Christmas trying to get my blood thinness back into what they consider 'therapeutic range' and, while I've flirted with the range off and on I don't think I've been in it for more than a few days in all those months. So I was worried about clots.

Then, to top it all off, on Feb 17--my 21st wedding anniversary, no less--I slipped and fell in the shower. While I'm certain I didn't hit my head going down and only banged up my legs a little (my shower is very narrow and small so there's a limited way you can fall, really), it still jarred my brain pretty well and my headaches have been worse. At this point in my brain injury saga, though, that's more of an irritant than anything else.

But--you're here for good news. I got a scan done of my leg. Doctor and I agreed it's best to be safe rather than sorry, and if I was forming clots again we wanted to know before they became so ginormous as to be surgery worthy. Scan came back clear. Both scans, actually. Apparently I have very small veins and am a tough scan, particularly after the surgery. So two different technicians scanned my leg. But I'm clear! Hooray!

Bryan and I have been walking in the evenings, which has been great both for my health and my emotional well being. And I've been writing again. I have a goal now to write 12 stories this year. It's been a slow process as I figure out myself and my pace and all that fun stuff, but I'm doing it. I have no idea what will get published, or when, but I'm writing. These things I'm doing for me, for my emotional and physical health.

I'm still sewing aprons as well, and taking on more responsibilities at home. Things still tire me out fairly quickly, like grocery shopping last night, but I'm working on rebuilding my stamina. I'm tired of feeling weak, and of being weak.

As far as my concussion recovery goes, there's still a great deal of frustration there. Falling was bad, of course. Even the slightest jarring on an already bruised brain causes additional pain. It's been more than 18 months now, and that's a super hard number to reconcile. Bryan has taken on a second job and I can't even begin to tell you how that makes me feel. Recently I shared on Facebook how we used to go to movies together and as a family. Last night talking to the kids I found myself getting worked up because I can't get excited about new releases anymore because I can't go see them. I have to wait an additional 8 months or whatever until they get released to DVD and BlueRay. I won't deny there's bitterness there. Anger. All born out of frustration that I'm not healing as quickly as I'd like to be.

Recently I tried driving again. It was horrible. The anxiety was so bad, and it was only a half mile drive through our tiny town from the track to my house. Bryan was right next to me the whole time. I felt like such a baby. And it made me so mad. I wanted to just scream at the injustice of it all. I know that, if I had to, I could drive myself to the hospital or to the drug store for medicine (it doesn't come up because I don't have access to a car during the day). But if I had to drive my kids to school 30 miles away on the highway? Or to church? I'd never make it. This is me facing one of the things that I hate the most--feeling helpless. And having to reconcile it in my life.

I don't take anything for my anxiety anymore. I did in the beginning, and sometimes I miss it. But overall I avoid the things that cause anxiety (like driving, but that's also because of the other things required of driving like attention to detail and paying attention to several things at once which I still cannot do) rather than take more pills. I take enough, thanks. For the most part I can convince myself my anxiety isn't that bad.

This was supposed to be a positive post, and I've tangented. Sorry about that. Overall, I am improving. I'm looking forward to a much happier and more productive year than last year. I want to forget a large part of 2016, except for what I've learned. And the fact that I may never wear jeans again. That's kind of sad. But, such is life!