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.

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:

video
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.