It's no secret I'm an active member of the LDS church, or that twice a year we participate in General Conference that is broadcast worldwide. I want to talk about one of the conference talks that really hit home to me. You can reference it HERE since I'm having issues trying to post the video, because I'm not tech savvy.
Go ahead and watch. I'll wait.
That's just what I've been doing. Waiting. I've been waiting for more than two years for my brain to heal. And if you've followed this blog, you know I've struggled a lot with feelings of hopelessness and bitterness. I've tried to keep my head above water, but nobody expected my injury to cause these long-lasting symptoms--least of all me. I'm supposed to be the mom. Do you have any idea how hard it was to see the fear in my kids' eyes when I was in the hospital last year? Or when I came home? My girls still won't talk about it, but I can see the phantoms of it in their expressions whenever I complain of pains in my legs or my head or talk about coming down with something--even a common cold. They're scared. My illnesses stole a security from them, the concept that Mom is a rock in their lives. And it happened far too early.
These illnesses have been an uphill battle. While I expect someday to heal from the brain injury, there's no telling when. In the mean time, I live with it. This thing that has altered our lives completely. It's altered Bryan's employment, altered how the kids go to school, how I work, my plans for publishing my books--everything. The blood clot issue is forever. I've had clots while on blood thinners so we know that it's never going to change. And that's altered how I live my life.
So like Elder Hallstrom asks in his video, Do I have the faith not to be healed?
I had to answer that question last year. There were three distinct moments in 2016 when I could have died, when I was aware of death, and was spared. It was a life-altering time for me, and, to be honest, a time I'm still recovering from. I'm still adjusting to my life as it is now. Sometimes I rebel against it, sometimes I get angry at my new restrictions and yes--there are moments I feel cheated. I'm human. My left leg will never, ever be what it was before. When I don't wear my compression sock it aches like you would not believe. But I HAVE MY LEFT LEG. This time last year the doctors considered that a miracle. Last April, when I saw my surgeon, he couldn't believe how the swelling had gone down, and couldn't believe I could walk as well as I can. I could choose to be bitter and say that's easy for him to say because he doesn't have to live with it. OR I could be grateful for what I have.
I'll choose gratitude. Frankly, it's easier. I have days when I'm feeling low. When I'm walking and I push to hard my leg will pull and ache and I'll be reminded of my limitations. Sometimes I get frustrated. But the alternative would be much harder.
Lately I've been struggling with my brain injury a lot. The two week migraine was like a setback to the early days of my injury. I'm struggling with finding my words again. My memory is like Swiss cheese. I have two measly writing goals right now, and they feel unattainable. Last night I was trying to ask Bryan a question and got stuck halfway through because I couldn't remember a word. A regular, mundane household word. Writing is like the tide, the words ebb and flow in ways I can't control to save my life. And, the whole time, despite pain shots and medications, my head hurts. The whole time.
So I might as well write as not, right? If I'm going to be in pain regardless, I might as well work. There may as well be something to show for it in the end. It's so hard. I hate the pain. But I live with the pain. All day. All night. It's always there. Sometimes it's less, sometimes more. But always present. It's this weight I carry around. Lately I started noticing that I sleep in a tightly curled ball. I tense up in my sleep, instead of relaxing. One night my cat rested his head in my open palm, and I drifted off. A noise woke me just as I was almost asleep, and I realized I'd started tensing my hand and pulling his head away from his body. Since then, I've realized I tense up my shoulders at the computer. I'm just this huge ball of stress. Anxiety is one of my TBI (traumatic brain injury) symptoms that I don't medicate. I take so many pills already...
I didn't intend to get off topic. This was a great talk and I found so many truths in it. There are little steps I can take despite my issues. There are lots of ways I can be better, more patient, especially with myself. Forward progress is still progress, even when it's slow. I don't have to wait until I'm better (when ever what will be) to do great things.
Wednesday, October 4, 2017
Monday, September 25, 2017
Concussion-related Anxiety or Something Else?
And nothing I do seems to have any effect.
Being a missionary is hard work. It's tough. We know this. But there are ways to make it harder. And by all accounts, reading his emails home and being in contact with his mission president, he's following that path. His last email sent my anxiety into full swing. I've been a mess all day worrying about him. Borderline irrational. I keep having to talk myself down from crazy thoughts. I'm just so worried I can't think straight, can't concentrate on anything.
I've been praying all afternoon and evening because prayer is the weapon of every mother who is separated from her child by distance. I've reached out to his mission president. They have been and are aware of the issues. They are in the trenches with him, so to speak. The steps are being taken to help him. I have to let that, and prayer, be enough. And our letters and emails to him. And packages with candy and silly notes and reminders that he is precious to us.
And in the mean time I have to figure out a way to stop near-panicking. Because crying only makes my migraine worse, and I don't think it helps anyone--like, at all.
Sunday, June 4, 2017
Today
Today was an amazing day. My boys got ordained elders. They received the Melchezedic priesthood. They can give blessings. It's so awesome. Our stake president, Pres Gladwell, also came to us and said their mission calls have been assigned and asked if we'd gotten them yet. I mean, he said they might come tomorrow since they hadn't come yet. Also, since it was stake conference, we got to listen to wonderful talks given by a presiding authority, our stake president, the temple president, and his wife.
Amazing, spiritual day.
It was also horrible. And I'm so tired of making this comparison.
Our stake building is over an hour away from our house. You would not believe this road. We hit Lawton (and, mind you, part of this is the suspension in our truck), and it's like a badly done roller coaster. We're literally thrown around the vehicle if we don't brace ourselves. Which I do, of course, because duh. But by the time we get there I'm carsick and my head is killing me. I hate this stupid headache. Then sitting through a 2 hr meeting of loud organ playing, speaking, and singing is a test of endurance. But I'm just tired of missing out on everything. On life. You know? I'm tired of spectating, or, even worse, getting the run-down on events after the fact. These are my kids' most important life events. I'm their mother. It kills me how much I've missed already. So I go. I put up with the crappy car ride, the noise, lights, etc that physically hurt me. I do that not for the pats on the back or sympathy or my daughter asking me a half dozen times if I'm okay. I do it because I don't want my kids looking back on the most important memories of their childhood and wondering where their mom was. And yes, in small part because I don't want to regret.
But what's also hard is sitting there and being reminded that you don't go to the temple often enough. That you don't fulfill those most wondrous covenants, those precious blessings that you have access to. Like everyone else I could come up with excuses why I don't. But to be honest I only have one--the car ride to OKC kills me. It doesn't seem to matter which car I'm in, by the time I get up there you practically have to spoon me off the floorboards. To do that, go through a session, and then drive home, makes me feel like a coward. I don't feel like I can do it. I want to. Can't tell you how much I want to. Feels like such a waste to have a current recommend I don't use. I was griping to my husband recently about how long my recovery has gone on and how isolated I feel. It's miserable. And while I can see small improvements days like today make me feel like I'm never going to get better.
Amazing, spiritual day.
It was also horrible. And I'm so tired of making this comparison.
Our stake building is over an hour away from our house. You would not believe this road. We hit Lawton (and, mind you, part of this is the suspension in our truck), and it's like a badly done roller coaster. We're literally thrown around the vehicle if we don't brace ourselves. Which I do, of course, because duh. But by the time we get there I'm carsick and my head is killing me. I hate this stupid headache. Then sitting through a 2 hr meeting of loud organ playing, speaking, and singing is a test of endurance. But I'm just tired of missing out on everything. On life. You know? I'm tired of spectating, or, even worse, getting the run-down on events after the fact. These are my kids' most important life events. I'm their mother. It kills me how much I've missed already. So I go. I put up with the crappy car ride, the noise, lights, etc that physically hurt me. I do that not for the pats on the back or sympathy or my daughter asking me a half dozen times if I'm okay. I do it because I don't want my kids looking back on the most important memories of their childhood and wondering where their mom was. And yes, in small part because I don't want to regret.
But what's also hard is sitting there and being reminded that you don't go to the temple often enough. That you don't fulfill those most wondrous covenants, those precious blessings that you have access to. Like everyone else I could come up with excuses why I don't. But to be honest I only have one--the car ride to OKC kills me. It doesn't seem to matter which car I'm in, by the time I get up there you practically have to spoon me off the floorboards. To do that, go through a session, and then drive home, makes me feel like a coward. I don't feel like I can do it. I want to. Can't tell you how much I want to. Feels like such a waste to have a current recommend I don't use. I was griping to my husband recently about how long my recovery has gone on and how isolated I feel. It's miserable. And while I can see small improvements days like today make me feel like I'm never going to get better.
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.
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.
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.
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!
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!
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