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 30 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

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.

Tuesday, March 22, 2016

I Give Up

I say this to myself several times a day.

I give up.

I can't do this anymore.

I'm done.

Fighting constant pain/discomfort/fatigue is one of the hardest struggles I've gone through. Add my never-ending battle with depression/malaise, and you've pretty much got my life.

For months, I've refused to let myself utter the words of capitulation. I refused to surrender. I won't be a quitter. Won't give in. Won't give up. Won't stop trying.

Until I did.

But, every time I said, "I give up" I've kept going. Saying isn't always doing. I know the process--thoughts proceed words, words proceed actions--but let's remember that as a teen I used to say "I'm going to kill him/her" to express frustration. To date, I've never killed anyone. Granted that's an extreme example, but there you are.

I'm not giving up the grand total sum of everything. On the contrary. I'm giving myself permission to give up the moment. Concede the minute, the hour, even the day. I lost this round, I'm going to take a pain pill and rest. Or the equivalent.

Bryan and I had rather a fun set-to yesterday. It was the first time in a while we'd been home alone together, and it was good overall. Emotional, but good. Turns out I've been so good about not complaining (because I'm sick TO DEATH of talking about my condition) that he had no idea how abused I feel by the system we're dealing with right now. As an example:

My doctor, back in Jan/Feb, wanted me to see another neurologist for a second opinion on my condition. Neither of us was satisfied by the first neurologist, who basically prescribed a bunch of mood altering medications for my pain and then released me into the care of my PCP. The first neurologist they found didn't take the workman's comp (we get that a lot), the second one ended up being a nephrologist, who is a Dr who specializes in kidneys. Not remotely the same thing. So my Dr's office told me to find a neurologist who will take the insurance and then call them and they will send over the referral. Frustrated with the whole thing (because I really, really am), I was dragging my feet a bit. I'm tired of being prodded at. I'm tired of feeling like I have to justify my pain and prove I'm not faking. I can't imagine why anyone would think I would want to live my life like this.

Last week, I went back to my Dr for my regular follow up/status visit. We were ambushed again by the home care nurse who has been contracted by the workman's comp insurance people to sit in on some of my Dr visits. I never know when she's going to be there, can't prep for it at all. Just without warning, boom. I'm sure she's a nice person, but it feels very invasive to me. And she does nothing to keep the conversation on track. At my visit, which took place directly after my son's visit for his acne (so she was in the exam room during his visit too, which I felt was inappropriate) she, the Dr, and Bryan talked about acne, high school, classic cars, and pretty much everything but why we were there in the first place. My head was pounding by the time we left, and I was furious. This is supposed to be a Dr visit, not a social call. I very much want and need (for the sake of my pain levels) everyone to stay on topic and get through the appt as quickly as possible.

Anyway, it was this nurse who told me that I had an appointment with a neurologist in OKC for April 5th. She said "they" had scheduled the appointment for me, and wrote down the Dr's name, address, and the time of the appt. It took me a few days to recover, but eventually I got to wondering who she meant by "they." She didn't mean my Dr's office. Last I heard the ball was in my court to find a neurologist.

Yesterday I called the neurologist in OKC and asked them about my appointment. It's a good thing I did, because I was given the wrong time for the appt and we would have been late (after driving for 2 hrs to get there). Turns out the workman's comp insurance adjuster had found this Dr and made the appointment for me. Why she never told me is a mystery. We do have an open line of communication and have spoken before. She has both my email and my phone number. I can't help but feel like this is a "let's catch her faking the system" sort of set up.

But, like I told Bryan, I'm tired of proving to people how miserable I am. If we didn't need the $400/mo I'm getting in payment compensation for not being able to work I'd tell them all exactly what I think of them and where they can stick their nosiness. Which is sad, and makes me feel even worse about myself and my current situation.

So, yes. Some days I give myself permission to give up. If I didn't, I'd go completely mad.

Sunday, March 13, 2016

The Big Reveal

Today, we Skype-d with these beautiful people to discover whether the little "baby Egg" they
re hatching is a boy or a girl. It's pretty cute, with a last name of Van Egmond, that they call the little one Baby Egg. As luck would have it, our Skype video cut out SECONDS before the big reveal--so we missed the live version. But we caught this video, which is awesome:

Bry also sent along some sweet ultrasound videos. Evidently Baby Egg was feeling a bit fiesty, and didn't want to sit still for the 3D imaging, so they didn't get one of those--but they got the standard ultrasound pics, which I'll share here because I'm already deeply in love. I'd say that's a grandma thing, but, seriously, anyone who knows me knows I'm a sucker for a baby. Any baby.

Literally. Any. Baby. And then there's Bryan. Big grin. Seriously. I don't think he could get any more content with life right now. Sure, we're still in kind of a financial fix, but when it comes to what truly matters in life, he's on top of the world. Especially since saying "granddaughter" to him no longer calls up a theoretical, uncertain future. Now we're talking August. September.

Without further ado, here she is:
Standard Profile. Beautiful
Baby Foot
Social Bug. Already sayin' hello!

It's funny. Back in January of 2015 when we had our mini family reunion at Disneyland, Chris, Bryan, and I had a brief conversation about their plans to start a family. No pressure, no rush--of course--just sort of curiosity. And later that day or the next day, I looked at Chris and got the strongest feeling that his first child was going to be a girl. I told Bryan, and a few other people, but just kind of kept it low key. Then in December when Bry called to say she was pregnant I remembered that and thought, "It's a girl!" but I was nice and let them tell us. ;)

Can't wait to meet her!

"Life IS Pain, Highness"

The title of this blog is a quote from the movie, The Princess Bride (1987). I came here to post about two things, but they are so drastically different from one another they each deserve their own post.

Saturday morning, we learned that my brother in law lost the love of his life to a heroin overdose. She died in his arms. As heartbroken as we are for him and his loss, and the shortening of her life, there's something I want to say here. We're all dancing around the drug issue, and I don't want to do that. I didn't know Audra, and there's no way on Earth I'm going to judge her or condemn her choices. No. Way.

But we need to stop denying that heroin is a problem, or stop labeling it as someone else's problem. Heroin is the street drug of choice for people who can no longer get the prescription drugs they're addicted to from their doctors. I can't speak to Audra's situation, and I won't, but I want to point out that addiction can touch ANYONE. You don't have to be self-medicating your way through a rough life to become addicted. You could be recovering from a car accident, or an industrial accident.

Drop the stigma. While I believe that we need to take whatever responsibility is ours for our choices, each of us needs to accept that "Big Pharma" is an industry. They're not out to see us cured. They're out to make money.

Medicate carefully. Always question. If you don't feel you should take a medication, ask your doctor. Ask your pharmacist. Be informed.

Rest in peace, Audra. Know that you are forever loved.

Wednesday, February 17, 2016

The Flip Side

At this very moment 20 years ago, my wedding began.

Twenty years. That's a milestone. That's significant. That's important, especially in this day and age. It's remarkable. Twenty happy years is a miracle.

Except I'm not happy today.

I freely admit that this stupid brain injury, coupled with my medicinal cocktail of mind and mood altering drugs, has me in a bad spot. There's a reason they warn people with brain injuries to avoid making any serious or life-altering decisions on their own.

Like unpublishing every single book/poem/short story I've ever written. Taking down my website and disappearing, becoming nothing but an internet ghost with old URL's and defunct purchase links.

Or running away from home.

That's, essentially, why I'm here. Because, while I'm happily married and wouldn't change Bryan for anyone in the world--because after the passion and fun and heartache and everything life is, he gets me. Genuinely gets me. And that's more important than anything else.

But I woke up Monday morning mad. And I went to bed Monday (ahem, afternoon--personal timeout) mad. And I woke up Tuesday mad. And I didn't sleep at all last night because I finally understood why I was mad.

Like any normal human being, I WANTED TO CELEBRATE MY ANNIVERSARY. It's a big one, and I wanted to do something big. Unfortunately, due to my current physical condition, I can't even comfortably go out to dinner. Dinner at a restaurant. When was the last time you gave a second thought to a dinner alone with your husband?

For our tenth anniversary, we finally took a honeymoon. Although that sounds weird, I wouldn't change that memory for anything. I'll even go out on a limb and say a honeymoon after 10 yrs of marriage is even more magical than one taken ten hours after the wedding. It was the best. In the past we talked about how to top it. Where to go for our 20th? What to do?

Forget topping it. How about repeating it? I'd give anything to be able to go to Disneyland this weekend. But, finances and work schedules aside, we simply can't. No, correction. I can't. I get anxiety just thinking about the crowds. Forget the noise. Forget the rides. I can't even handle that many people.

Do you know what our anniversary plans consist of? Bryan is going to make me a lovely dinner. My mom has arranged for none of the kids to have to come home until late tonight so that we can have the whole evening alone. At home. Why? Because it's the best we can do, and they love us.

Let me translate that for you: Everyone in my home is rearranging their schedule/life to accommodate my disability. Mine. The "mom." The one who is supposed to be the one doing the rearranging.

I'm completely split down the middle. Part of me is overwhelmed by their love and thoughtfulness. Part of me is furious at myself for requiring it.

Saturday I made cookies. Sunday was Valentines day, and I wanted to make my kids heart shaped chocolate chip cookies because it was the only valentine I was able to provide. It exhausted me. At one point, near breaking, I collapsed on the couch and drew Bryan's attention (not deliberately). He kept asking me what was wrong so obviously I had to respond. But what I said was, "Can we please not draw more attention to my condition?"

I'm tired of everyone having to make allowances for my condition. I'm tired of talking about it. I'm tired of doctors, medications, alternate therapies, all of it. I know it's immature. But I'm over my limit. I'm sick of all of it.

It cost me a night's sleep, but at least now I understand why I was so angry. I'm posting this for you 3 people to see because I'm hoping it will help me get it out of my system, so I can enjoy the paltry, unworthy, celebration of our 20 years of marriage. Because that matters. I'm not going to ruin Bryan's anniversary because I'm feeling sorry for myself.

**Update** It never stops, does it? The car has decided to literally fall apart, and now my son can't get it home. So I guess we'll take a rain check on that lovely dinner we'd planned, so Bryan can go rescue the kids. This isn't the first anniversary I've spent alone. 

Tuesday, January 26, 2016

More than a Diagnosis

Recently, a suspicion that I've long harbored has been confirmed. (I hate it when I'm right) I've recently learned that I have a child on the autism spectrum--Aspergers, or ASD Level 1.

Bear with me, please. I'm still learning about this, still processing, still trying to put all the pieces together. And my journey is not the same as yours, so we're not going to agree on all points.

This is my daughter. She's fourteen. She's amazing. She taught herself to read music, to play the clarinet, to play the harp, is learning the guitar, has an imagination that can really, truly take you places. She's brilliant--I mean scary smart.

She is also willful, stubborn, opinionated, adamant, exasperating, frustrating, and utterly unique. She has a difficult time making friends, and a hard time understanding social queues or recognizing the need for observing certain social rituals. She can be incredibly inappropriate at times, and not understand why she's alienated you. She also has a very unique way of looking at the world, and that has led to some memories she absolutely swears are true, but never happened. I cite a conversation she had with her uncle last year. For weeks, she repeated to me that he'd told her he'd come back in a year--and even took her to the calendar that hangs in our kitchen to show her the dates. But a brief conversation with my brother proved he'd never done such a thing. But, to her, it happened, and nothing will shake her conviction of that. Even though she's wrong about it.

I've known for some time now that this particular child of mine required special handling. Not everybody "gets" her, and consequently she's been bullied, teased, ostracized, and criticized--and not just by her peers. We're talking adults too. I'm not mad. I don't blame anyone, because nobody knows better than I do how frustrating she can be. And I fully recognize I'm far more invested in her as a person than her drama coach, her church leaders, or her teachers. They don't have to put the effort into understanding her that I've had to do, because their interactions with her are relatively brief.

The Asperger's stereotype is a person who is a genius, a savant, but who can't conquer basic social behaviors. (They don't call it Asperger's anymore, btw, it's all part of the autism spectrum now) In many ways, this is my daughter. But she's far more than just a stereotype. She's a human being who has to learn how to make her way in this crazy, mixed up world. She's a beautiful child of God, just like you and me. She's my daughter, and like every other mother in my shoes, I will be her biggest advocate.

Thursday, January 21, 2016

Is it Insecurity, or Something Else?

I've never fit in, though I doubt that comes to a surprise to anyone reading this. Chances are that you're here because you know me, personally. Most of the time not fitting in doesn't bother me, but there are moments when I feel relegated to the outside looking in. Alone.

I don't know if this is a side effect of a creative mind, or if it's something else. Nobody ever talks about this sort of thing--at least not with me around.

Here's basically how it goes: I'm with a friend, or in a group of friends. We're laughing and having fun and joking and it's wonderful. Until later. When I'm alone, that tiny voice inside says that my connection to them, my love for them, is stronger than their love for me. That they don't like me as much as they seem to--I'm projecting affection when it isn't there. I'm forgettable. Unnecessary.

Essentially superfluous.

I'm sure if we grab a nutcracker and crack open my psyche, we'd find this stems from issues imprinted upon me as a child. Okay, fine. But knowing where it comes from doesn't necessarily help.

So, that's how I feel. That's my weight to carry. What I don't do is demand, through direct or indirect means, that my friends validate me. That's a choice. I've recognized that I have this insecurity, but I'm not going to be the type of friend who is always so emotionally needy that she drives people away. There's only so much of that a person can handle, and most of us reserve that energy for family. Obviously, this doesn't mean I'm some kind of martyr, or saint. I just feel that everyone likes to know that they are valued. When I have those moments, when someone appreciates my contribution, it has incalculable meaning.

I guess the takeaway here is that we need to be free and genuine with our complements, because you never know how much you may help someone.

Saturday, January 9, 2016

Day 162

A week ago, I went off my medications.

I did this for a variety of reasons, but the primary purpose was to get a base line of my symptoms and how I felt off of them. After FIVE months of dealing with the pain, dizziness, memory issues, anxiety, etc., I wanted to know how sick I really was and what, if anything, is triggered by my meds.

Like, what if my primary source of pain is from rebound headaches triggered by medication? What if I'm becoming chemically dependent on this crap, and just need to get away from it all? What if I've actually gotten better, but my meds make me think I'm still sick?

Guess what? No withdrawals. No shakes, no cravings. In fact, the only aggravated symptom was my extreme lack of patience caused by pain and still having to deal with people--this is not a skill at which I excel.

There are plenty of people out there who will argue that I'm not giving myself enough time off the meds to truly get a reading of how I am without them. You know what? You're all welcome to your opinions. I'm the one living with this--me and my family, you know, these poor saps who have to deal with me. Just so you know, I went to my doctor this week too. We talked about medication half life and how long it takes for all of it to truly flush from your system. I drank a TON of water this week--to literally aid in the flushing.

I can tell you that, yes, my symptoms are real. And miserable. For several days this week, the pain in my head was such that I could hardly move. Without the meds, my confusion and disorientation increased. My dizziness increased. I fell over today in the storage room, and really all I was doing was standing there. My insomnia is much, much worse.

This answers the important question of whether or not the medications are really doing anything for me. I've concluded that they are. Bryan and I talked today about when I was going to start the regime up again. Or if I was going to, because that was also a consideration. It's hard, because I hate taking so many chemicals. But, during my recovery, I need to be as easy to live with as possible. I can't give my kids a short-tempered, constantly-in-pain couch potato, can I? How is that fair for anyone?

I've learned a lot this week. Mostly, that this really stinks. The worst thing is that nobody can tell me when I'm going to be better. Though she didn't tell me (ever--I had to learn from my regular Dr), the neurologist DID diagnose me with Post-concussion Syndrome. Look it up. The Mayo Clinic website has some great info about it--mostly what they don't know about the condition. Huzzah.

Lately, I've been dreaming of peaceful beaches and ocean views. I can't travel anywhere, but the thought appeals. Perhaps I'm just looking for an escape, but I can't escape my own brain.