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.