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!

Saturday, October 22, 2016

So, This Thing Happened...And Then That...And That...

I really want to journal all of this in one place for several reasons. One, to update everyone on what happened so the facts are straight. Two, to keep inaccurate rumors from spreading. And three, so that there is a timeline of events to reference later.

Around September 13, I began to notice some pain and general aching in my left hip. The pain quickly spread down my leg, and I began to notice some swelling in my leg. By the time I got to the doctor's office Friday morning, the pain was so bad I would have happily sawed my leg off to stop it. My leg hurt to walk on it, to stand on it, anything. Bryan had to put me in one of their wheelchairs and wheel me into the office. My doctor (who is a nurse practitioner) took one look at my leg and said, "I'm pretty sure you have a blood clot, and you need to go straight to the ER. I'll call them and let them know you're coming."

Mind you, we'd done a little online research and only one leg swelling was a fair indication of a blood clot. But it was still the worst thing we could have heard in that moment. And it was the only thing on our minds in that quiet 3 minute trip to the ER. Naturally, I was admitted to the hospital. Friday, September 16. See how quickly that happened? The clot had been forming for some time, but from the moment my symptoms showed up to the moment they became unbearable was a matter of days. Hours that you can count.

In the hospital the doctors were focused on getting me on blood thinners so they could work on breaking up the clot, which is actually kind of misleading. The clot doesn't really break up. What happens is the body reabsorbs the clot, but the blood thinners prevent the clot from getting bigger in the meantime. So I was getting shots and pills to help keep the clot from getting bigger because the ultrasound they did when I arrived showed a clot that went from the back of my knee all the way to my groin.

Did you get that? The ENTIRE LENGTH OF MY THIGH. Have you ever measured your thigh? Mine is 23 inches long, for perspective. The doctors called that a "significant" blood clot. Pretty, right?

They kept me until Monday, September 19, until the internal medicine doctor who admitted me went off duty and his partner took over my case. The first doctor told me I could go home when I felt ready. The second doctor was like, "Okay, time to go home." I didn't feel ready, to be honest, but he's the doctor. And I was bored. I'd rather be home. I didn't feel well, but he's the doctor.

So I went home that afternoon, collapsed on the couch. Later, dragged myself to bed, slept very badly, woke up several times, got up several times. I was in so much pain because he'd discharged me with no pain meds, even though they'd given me pain meds in the hospital. In the early hours of the morning, as I lay there hurting and feeling awful, I knew all I had to do was tell Bryan I wanted to go back and he'd take me back. But was it the right thing to do? Or was I being a baby?

Then I remembered something my son told me. Shortly before I'd ended up in the hospital, Daniel's Bio-med class had a lesson on blood clots and DVT (deep vein thrombosis--my diagnosis). Armed with what he'd learned in that class, Daniel had come to me in the hospital and told me not to make light of my pain. To tell the doctors and nurses when I'm hurting. To be honest and not gloss over it.  He'd been very sincere and a tad emotional about it.

So I told Bryan I needed to go back to the ER. We made the drive back to Duncan because that's where I'd stayed and they had all the records and info. I gave them all my symptoms, they ran a bunch of tests including blood tests and guess what? I was severely anemic. They gave me 2 units of blood that day, and one more the next day. They admitted me back into the hospital (this was Sept 20 if you remember, I'd only been out of the hospital for less than a day) and ran a bunch of tests to try and find out why I was anemic. Turns out I had a bunch of blood pooled in my abdomen.

I have a DVT, and the doctors put me on blood thinners aggressively. Then we find out I'm bleeding internally. Well, that's a bit of a problem. If we dial back on the blood thinners to try and find the source of the bleed, then we risk complications from the clot--like part of it breaking loose and going to my lungs, heart, or brain. But we can't just let me bleed. Solution: Insert a filter that will prevent clots from escaping so we can go off blood thinners and try to find the source of the bleed.

That was a strange operation. They didn't really put me under, I was sort of in and out and could hear them talking while they operated, but I wasn't really conscious. Afterward, with filter in place, they took me off the blood thinners and went about trying to find out where I was bleeding from.

They never did find the source of the bleed. In the mean time, my leg (remember that swelling) kept getting bigger and heavier. It was hard to get around on it, the dang thing was like a tree trunk. I struggled to get out of bed, to go to the bathroom, to shower, to do whatever. The bleeding stopped on its own, the blood was reabsorbed by my body. They started me back on different blood thinners to try and get my clots back under control, but by then the concern was that I was facing lifelong complications.

Without surgery, I was looking at a lifetime of wheelchairs, walkers, canes, swelling, and pain. What I was feeling in the hospital was what I would experience the rest of my life. With surgery, I had a chance of resuming essentially a normal life. Though surgery was not without risk. After much thought, prayer, and consideration, we opted for the surgery.

On September 27, I was transported by ambulance to Integris Baptist Medical Center in OKC to undergo a procedure the doctor in Duncan had discussed with me and Bryan. It involved pumping me full of a lot of blood thinners in an effort to aggressively break up the clot. The risk was that for a period of time I would be very susceptible to bleeding after the procedure. The prepped me for the procedure while Bryan drove up, and then he met with the Dr who would perform the surgery. It was Bryan who mentioned that I'd previously had internal bleeding. Dr froze. "What?!"

Game changer. Bryan asked him later how close we were to losing me. "Very close."

At first they were just going to shut everything down and just send me back to Duncan, but then this surgeon, Dr Neel, consulted a cardiac surgeon, and came up with an alternate procedure. On Sept 29 they performed surgery to remove the blood clots in my leg that did not drastically endanger my life. Everything went smoothly, and I was in recovery before you knew it. I did spend some time in the ICU, but not a lot. I was really in and out during that time, mostly sleepy, so I don't remember much.

Dr Neel was super impressed with how well I recovered from the surgery, and sent me home Monday, Oct 3. He'd wanted to send me home Sunday, but I wasn't ready. I felt much more prepared Monday. At least I'd learned enough to speak up for myself that time.

The week I was home I got to see my sister in law, my brother in law, my stepdaughter, and my new granddaughter. Unfortunately, Wednesday Oct 5 I began to notice some tightness in my chest and difficulty drawing a deep breath. Hoping it was just due to the surgery and that I needed to just work my lungs a little more, I tried to ignore it. Stupid, I know.

The breathing issues only got worse. For those first couple of days I didn't tell anyone. I didn't want it to be anything serious. I'd spent so much time in the hospital. I'd already almost died twice. But it got painful. To breath. To move. To recline in certain positions. The more I walked the more it hurt to breathe. I'd have to cough. I fought to make it through the weekend so I wouldn't have to go to the ER. I figured I'd go in to see my doctor instead. So Monday, October 10 we made an appt and that afternoon I went to see my Dr. Except she was on vacation so I saw another practioner in the office. She looked at my history, listened to my symptoms, and said go to the ER.

On our way out I told Bryan I'd throw a royal tantrum if I wasn't so certain it would hurt really really bad.

So we went to the ER. The doctor there ordered some blood work and a CT scan of my chest. Throughout this ordeal, I've noticed a few things. One, I try to go to my doctor and end up in the ER. Two, while in the hospital I get taken for a CT scan or ultrasound and the tech performing the test treats me like breakable china after the test is over. Even though they aren't allowed to give me the results, it's pretty clear they've seen something bad. This happened that time too. The tech wheeled me back to my ER room and asked me if I needed to go to the bathroom and I said yes. First she said she'd take me over there and asked if I could make my way back to the room on my own, then said that no, she'd just ask them to bring in a potty so I wouldn't have to leave the room. Then suddenly the nurse comes in with a catheter set up. I'm like, people, all I need is 2 minutes with a toilet.

Suddenly I get 2 doctors and a nurse all with grave faces. I have "significant" fluid buildup in my chest. (significant, there's that word again) They can treat me here in Duncan, but they all agree that since I was just up in OKC and that's where all my surgical records are and everything that it would be best that I go back up there. They're making sense so I agree.

Next thing I hear Med-evac is on their way to pick me up. What? The HELICOPTER??

I had to ask Bryan because this happened very fast. I was never given an explanation about why they thought it was necessary to fly me out of there on a helicopter instead of driving me up via ambulance. I'd barely adjusted to the fact that I was going back to Integris Baptist when the crew showed up, strapped me into the tiny gurney burrito thingy, and loaded me into the bird.

Bryan told me he was told that the helicopter would be a smoother ride for me. At that time, the doctors weren't entirely sure what had caused the fluid in my chest and didn't want to risk more complications or issues by a rough ambulance ride.

Meanwhile I'm taking a nice, sunset helicopter ride to OKC.

I spent a lot of lonely, uncomfortable hours in the ER at Integris Baptist waiting for Bryan, and then waiting to be roomed. We did finally get to a room around 3 or 4 am. At least they were able to give me something for the pain and discomfort, but the bed I was in was really uncomfortable. Bryan was super sweet, though. When my mom came up to relieve him and he went home, he asked the staff to get me a better bed. And they did. That helped a ton.

This visit I did see Dr Neel, but only briefly. He had no expertise over my particular issue this time, but he was able to remove my stitches from my surgery--and give me a little hard time about being back in the hospital so soon. Because my issue was with my chest I got a pulmonologist, Dr Parker, and of course an attending physician, Dr Carter.

I got to have more tests run, yay, but the big issue this time was my INR. When you're on blood thinners, your INR needs to be at a theraputic level of between 2 and 3, so 2.5 is pretty good. But when you have an issue develop that requires a procedure being done, doctors might decide that's too high. They don't want you to develop complications like excessive bleeding. So your INR needs to come down. First they stop your blood thinning medication. Then, as long as it's safe to do so, they wait.

And wait. And wait. I was admitted on Monday, if you recall. Very late on Monday, but still. Even if you call it early Tuesday, that's not much difference. They didn't drain the fluid from my chest until Saturday, when my INR was low enough to safely proceed. They took 1.5 liters (1500 milliliters), which the person performing the procedure informed me was the max amount he was allowed to remove. He left a little in there. Usually the body reabsorbs it. Hopefully, right?

This hospital stay was different. I felt mostly okay. They had medicine to help control my pain, I knew I had to walk a bit to help heal my leg from the surgery, so I hated being restricted to the bed. But I was on bed rest with bathroom privileges. I had to request to have the cath removed. And after they removed the fluid from my chest I didn't feel much different. A little, but they'd just stuck a needle (and tube) into my chest so my chest was still sore.

I didn't go home Saturday. Or Sunday. Or Monday. Tuesday wasn't looking good, either, but then in the afternoon my attending came in and asked me if I wanted to go home. Sure! So Bryan drove up to OKC and took me and my mom home.

So I'm home. I've seen my new doctor (my primary care felt I needed more care than she could give, and offered to transfer me to the internal medicine doctor in their office). My lungs still sound good. I see the pulmonologist on Nov 3. I'm missing our family vacation right now, but those are the breaks, right?

There's still a chance that the fluid could build up again. They're still running tests to try and figure out where it came from and what caused it. Thankfully it wasn't blood. So far all of the tests have come back negative, but there are still cultures growing that can take weeks to pan out.

My doctor is referring me to a blood specialist to try and figure out why I got the blood clots to begin with, so we're nowhere near the end of this. Hopefully, though, with some diligence and effort, we can keep me from hanging out in the hospital anymore.

Wednesday, September 7, 2016

When You Get Hit Again

As many of you know, Sunday night I posted (in much frustration) about horsing around with my daughter and it ending with me getting smacked in the jaw with the back of her head and knocking my tooth loose. Which ended play. Which caused her, and by extension, my youngest daughter, horrible guilt.

It started out innocently enough. We never left the couch, so it didn't seem like anyone could get too injured, right? She declared I couldn't force her off the couch, which was a challenge I could hardly resist. A challenge I most certainly should have resisted.

The jaw is, as you know, without exception connected to the head. As Monday wore drew to a close it became evident to me that my loose tooth was not the only casualty of Sunday night's folly.

Why am I writing so weird? It's all formal and stuff.

 It became clear to me Monday night while I was trying to sleep that I was suffering from more severe headaches and dizziness than before. Kind of like when I originally hit my head 13 months ago, but with less of the confusion. Some of the less savory side effects were there, though, like my brain wanting to focus on swear words (I know, weird), being nauseated and super dizzy every time I moved, and the increased and intense headache.

I knew my concussion was worse, that when my daughter and I collided heads Sunday night I did more damage to my already damaged brain than I'd thought. Hanging out there in bed in the dark, being the only one awake and realizing I was probably concussed, again, I wasn't too comfortable falling asleep. But everyone had school the next day. I didn't want to bother anyone.

Isn't that just like a Mom? So I just stayed there, by myself, trying not to be too scared, until I eventually fell asleep about 3 am.

I woke up about 11 Tuesday morning and found Bryan home. As it happened, he woke up sick and stayed home. Not terribly sick, but nauseated and dizzy, with a couple of other symptoms. I thought, for a bit, that maybe we had the same thing and I was just sick and not concussed. But he had symptoms I didn't have, and my symptoms were too familiar to be mistaken.

So, after my shower I sat down with Bryan and explained to him what was going on. We focused on the idea of getting me a CT scan to make sure I hadn't done any damage, and sort of forgot to follow the normal pattern of medical procedure (call your Dr, let them know what happened, make an appt, get a referral, etc). We went to the ER.

When you go to the ER in the middle of a business day you have to answer a lot of uncomfortable questions about what you're doing there and not at your regular Dr. I regretted going, but honestly our thought was just on getting that CT scan asap. It wasn't well thought out of us. The only thing I will say is the drive to the hospital took 5 minutes, and it was excruciating. The drive to my Dr would have taken close to 40. I never would have made it.

The ER visit itself was horrible, as these things go. We got our CT scan, which was my focus. Their focus was my level of pain, which was a 7, but like I told Bryan at the time the pain is the pain. I wasn't worried about that. It's just what it is. (sooo foolish of me, but more on that later). We only wanted to be certain my brain was intact. The Dr was a little abrupt and the old school type, but he did give me a pain shot, which I did not expect, and prescribed me something for my nausea, which was nice.

The sequence of events becomes important. I got my pain shot minutes before they wheeled me back for the CT scan. It wasn't until I was in the machine that I remembered how much it hurts to get a CT scan with a concussion. There's a fair bit of jostling that happens within the machine, and by the time it's over, you're exhausted from trying to hold still and your head is pounding from the motion. Also you're so dizzy you can't even tell which way is up. They wheeled me back to my room, I curled up on the bed and cried. It was one of those involuntary cries where the tears just flow/leak from your eyes and you are powerless to stop it. I can say, at that point, my pain was probably an 8.

One of the nurses came by and switched off the lights for me, bless them. My sensitivity to light and sound at the point was extreme. Another came and gave me a wet cloth to put over my eyes. These wonderful women knew headaches. Meanwhile I just waited for that pain shot to kick in. One of the nurses asked if it had yet. Nope. I purposely asked for it in the right hip because I have a twinge of chronic pain there, and figured it would hit that first so I was kind of using that as a benchmark.

Lest you think I was alone, Bryan was there holding my hand. I know it's hard for him to see me in that much pain. We talked about when I was in labor with the kids, Brandon in particular because I was especially entertaining that time, and pretty much anything else that came to mind. It took nearly the whole hour waiting for the CT scan results to be read for the pain to subside to a 4. At least, the pain and nausea were able to take a back seat to the dizziness, which I guess is a good thing?

The good news is that the CT scan showed no evidence of a blood clot or brain bleed, or dead tissue resulting from a stroke. Yay! So I managed not to do any permanent damage to my brain.

The bad news is that the CT scan revealed my left frontal sinus is completely blocked. It was also this way in the scan done last August, so clearly the sinus is not draining. That's going to have to be addressed. It can't be helping my condition. (This is something my Dr is aware of. I had a referral to my kids' ENT before this ER visit)

As far as my concussion symptoms go, today, while I'm not back at square one, if there's a square 2 or 3 I'm there. Things like sitting up and cutting fabric or sitting at the sewing machine are beyond me right now. I can't say for how long. I need to follow up with my Dr, and I'm probably going to be going back to a neurologist and, likely, an ENT. Irony is just Sunday I was telling Bryan how tired I am of Drs. I wanted to just ride out the healing and wait until my brain got better. But this new injury is going to require medical care, attention, and monitoring.

I just hope the setback is not going to last long.

Wednesday, August 17, 2016

Traveling with PCS (post-concussion syndrome)

On August 6 I got on a plane in DFW and flew to SLC. I describe how that went down on FACEBOOK.

The rest of the week was a series of checks and balances, where I took every medication I had and rationalized my pain with the truth that I wouldn't have another option to see these wonderful people for a very long time.

I want to make it clear I'm not trying to get sympathy. I chose to go to dinner. I chose to take this trip. Period. And while I wasn't entirely sure how it would affect me, I did know the odds were good that I'd want to curl up in a dark room and stay there for the duration of the trip. And I did. I really, really wanted to do that. It wasn't necessarily bravery that kept me from doing so. I had my daughters with me, and I didn't want them to worry about me. I really wanted to visit my family and friends.

Living where I live in Oklahoma and having spent a year holed up in my house with this condition, it's been very much like a prison. I go to the doctor. I go shopping with my husband, and spend as little time as possible outside of the house. I've escaped to church a few times. But I feel so isolated. And as hard as it was to endure the trip to UT, as much pain as I put up with every day, as miserable as it was to keep moving every day when my body was screaming at me to find a hole and just sit in it, I needed to go.

Checks and balances. There are things you do for your body, and there are things you do for your soul. Sometimes you just need to see your friends. Your family. Sometimes your soul just needs certain people.

The trip home that I scheduled did not end up being the trip home that happened. I scheduled an early morning direct flight. I spent the week psyching myself up for exactly that. Even the night before, I was dreading it. Tamping down my anxiety, especially after how hard it was to endure the flight out to UT. I just didn't want to do it again.

But I got us all checked in the day before, printed our boarding passes, and we were all set when we got up early Sat morning and drove to the airport. I walked up to the kiosk to check my bag and suddenly my flight information was all different. I waved over a ticket agent. "Oh," she said. "Storms in Dallas have cancelled 2 flights, maybe 3. This was the best we could do for you. Unless you want to discuss other options." Other options meant flying home another day. I wasn't mentally or emotionally prepared for that. I honestly didn't know if I could do that. But suddenly my direct flight home was 7 hours waiting at the airport for two flights ping-ponging us across the western half of the US.

I didn't look at her. "No," I said. "We'll just do this." We completed the bag check processes. Tears filled my eyes as I contemplated how drastically my day had changed, the implications it would have to my levels of pain.

Then one of my daughters said something and I knew I wasn't going to be able to give in to my feelings. I had to be strong. Because the alternative was to make them be strong instead, and that was a non-option. We found a place to sit and I explained the change. I called Bryan so he didn't get up and drive to the airport and waste his day sitting there waiting for us. We wandered through security and then to our gate (through a bookstore), got some food, and sat down to make the most of our wait.

I know most of you are wondering why I didn't just leave and reschedule the flight for the next day--when I probably could have gotten a direct flight. It would have made sense. But you have to understand I had been traumatized by the flight out, and I had spent a week--a full WEEK--psyching myself up for the flight home. I just didn't feel like I could handle leaving the airport and putting myself through all of that again the next day. I felt like we had to see it through that day. Even though it was going to be awful. So much worse. 

As it turns out, the wait was probably the worst part. Someone who is not hypersensitive to noise wouldn't notice airport noise, but hours of it grated on my senses. I held out and waited to take my pain meds until we were on the first flight, which made it surprisingly endurable. Also it was a small plane, which may have made a difference. When we hit the ground at LAX there wasn't time to think about how much pain I was in. We had to get from Terminal 6 to Terminal 4 in 20 min to catch our connecting flight. We made it as they were boarding our flight to Dallas--a 777-200 Airbus. I've NEVER been in a plane that big before. It was an incredible experience that I managed to enjoy despite being in incredible pain.

Some things I noticed that made the trip home more endurable were that knowing what to expect helped. Also, I know for a fact that I had heavenly help. I know I was given more strength than was my own. I could feel it as it left me on our descent to Dallas, when it was no longer needed. I'm so grateful for that.

We dragged ourselves off the plane and through the airport to baggage claim, where Bryan was waiting for us. Seeing him was like an oasis in the desert! I didn't have to be strong anymore. I could collapse (and almost did right there!). The drive home was still a little more than 2 hrs, and my exhaustion hit full force then. We ate, which was good since we hadn't had anything decent all day. Just snacks. I started hallucinating, one of the things I do with this brain injury, especially when I'm really tired. I experienced "halos" like people with migraines sometimes get, and had to keep my eyes shut for the duration of the drive. Between the two it was like little flying saucers were attacking our truck. So confusing.

We got home, and I managed to stay up for about another hour before going to bed. And slept until about 1pm the next day. That was 4 days ago, and I'm still recovering, still taking all of my pain meds every day to try and stave off the pain. I hope my head forgives me soon.

Thursday, April 28, 2016

Low Points

I admit it, I've been feeling pretty low this week. Haven't gotten a lot done. I felt pretty bad about missing church, again, but this time I didn't even get the option of going. So I spent the time working on some gifts I'm sending out next week. I was supposed to finish them this week.

You know those times in life when things just sort of pile on top of one another until you feel buried underneath a huge mound of garbage? That's how it feels right now. My health problems cause financial problems--in more ways than one. There's the obvious issue of my not working, and more than once I've heard that my workers' compensation rate is the lowest it could possibly be. Then when the insurance denies refills on meds the doctors prescribe me and Bryan has to choose to either pay for the meds out of the grocery budget or watch his wife be in pain, you can imagine what he chooses. And you can imagine the guilt that causes.

It's impossible not to feel guilty. I've been feeling so awful I'm wondering if it's possible to develop PTSD from situations such as mine. How do you ever get on top of it again? How do you break the cycle? I saw the neurologist on April 5, EIGHT months after my initial injury. We're still waiting on the insurance approval to begin treatment. Right now I don't technically *have* a doctor until that treatment plan is approved. I don't know how long it will take to get approved, or how long the treatment will last until I start to feel better.

And then what happens? I'll be honest. This has gone on for so long I'm almost afraid to get better. I want to get better. I want to not hurt anymore, but I don't know what to do about the fear and anxiety I'm having. What's going to happen when I'm expected to resume normal life again? Am I going to feel ready? Am I going to *be* ready? And I don't even know if we're talking months or years.

The financial strain is killing us. The emotional strain is even worse than the financial strain. And it's affecting the entire family. This is the kind of thing that's impossible to shield the kids from. I've started looking longingly toward the summer months because at least then they won't have school stress to worry about. They'll get some kind of break, because I can't give them a break from me.

And let me tell you, that guilt you can't measure by the bucket load.

In my darkest moments, and this week has been full of them, I want to rail against the injustice of it all. I went back to work because Bryan couldn't find a job. I went back to work because we needed money, cash flow, because I was trying to be a responsible parent and adult. I worked for 5 weeks before hitting my head on that stupid counter. 5 lame weeks. And I've been laid up with this stupid head injury, this inane brain injury, for going on NINE MONTHS. Sometimes I get so pissed about that I want to scream.

What did I do that was so wrong?

Then I calm down. Eventually. I know it was just an accident. And I know there's a plan. I believe that. I don't know all the details, and that can be frustrating, especially when I see how the struggle hurts my kids, but I have to trust God. I have to. He's brought me this far.

He didn't bring me all the way through all the rest of that crap just to dump me here. I know He didn't.

Thursday, March 24, 2016

I Love My Mommy

video
Living within the autism spectrum is challenging, even when you're only teetering on the brink. For example, I never know when my offerings of affection (hug, cuddle, or even resting my head on her shoulder) will be accepted and allowed, or when they will be rebuffed with a brusque "I can't stand having anyone invade my personal space!" I'm not the most affectionate human, and I get refused a lot.

Last night I was trying to fall asleep, trying not to think of all the little ways I'm failing as a mother, as a human being in general, and I couldn't stop the tears that came to my eyes because yes--logically I KNOW my daughter loves me, but the majority of the time I don't feel loved. And of course, any time I let my shell slip and show even a tiny fraction of how much it hurts I feel worse because the LAST THING I WANT IN THE WORLD is to make this harder for her, to give her guilt.

So yes, I was crying myself to sleep, feeling sorry for myself, trying not to, but there you are. I was. I'm human. I have weaknesses. I have moments when I wallow. Even though I told myself over and over that I was overreacting, that she didn't mean it, that -of course- she loves me.

Today, I was fighting through a particularly awful headache day when I realized Brandon's package that came earlier in the week included an SD card. With videos. Video responses to the letters we sent him. After I watched them I wanted to send one of them to my brother in UT but it was huge, so I had to find a free SD card in the house and copy it. The only one big enough was in my camera, so I found my old SD card (1GB) and copied all the files off of it so I could use that in my camera while Jim has the other one with the video on it (8GB). On the 1GB SD card I found the above video.

I wasn't even thinking about how awful I'd felt the night before. I wasn't looking for something to make me feel better. This was the answer to an unspoken prayer. This was God telling me that maybe, just maybe, I'm not as useless or hopeless as I might think I am.

And I am grateful for tender mercies just like these.