One Week Update: August 9

I know that I’ve been MIA for a week or so. I have had a couple of migraines, which I still get, despite my surgeries. Migraines are separate from Chiari, despite the fact that I get both types of headache concurrently, often. In case anyone is curious, my migraines, as a separate disorder, have been pretty well controlled lately, by the following regiment:

 

Preventative:

  • Amivog (this is one of the newer, monthly injectable medications)

  • Topamax (300 mg - yes, this is a big dose - mine is broken up into am/pm doses)

  • Botox (every 3 months following the protocol, plus in my jaw)

 

Abortive:

  • Imitrex (100 mg dose)

  • Frovatriptan (not WITH the Imitrex, duh - to every pharmacist out there who tells me, and will tell me)

  • Fiorcet (not the one with Codeine)

  • Zofran, when needed

 

As for the Amivog, it comes in two doses, a small and large. My neurologist just switched me to the larger dose, because she wants me to ultimately taper down on the Topamax. If the Amivog is successful, it has fewer side effects, and she wants to rely more heavily on that as a preventative. However, Tricare is not as reliable at delivering that medication, so I have to consider that. For example, I wasn’t able to get it this month, because they randomly switched pharmacies from which they will allow us to get it, meaning when I went to pick it up at Walgreen’s, from which I should have had no co-pay, it was, suddenly, $585. Ummm…no.

As for the Topamax; it’s a drug that’s been on the market for years. They renewed their patent recently by making an XR version called Trokendi. Many people don’t react well to either one. It has a long adjustment period. I’ve been on it since I was in my 20’s, at varying doses, sometimes as high as 800 mg! I’m not saying that was a great doctor. I’ve tried to taper down, or off before, and it seems like anytime I get below the 300 mg threshold, all hell breaks loose. We shall see, if when the Amivog is in place, the same holds true.

Anyway, I’m always curious what other patients have in their toolbox. That’s not all my daily meds, of course, just those for migraine. I’m actually not on that many meds any more. I’ve gotten them pretty weened down, and I’m glad for that. If only I could take nothing. Ah what a dream!

 

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.   Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

One of my favorite images of me and Collin. He’s always comforted me when I have been sick in bed with headaches. Here he is, as a toddler, crawling into bed with me, being his goofy self. it’s such a “Collin” pic, for anyone who knows him. For those who don’t, it’s just a goofy kid, and an adorable shot. He’s always a comfort, and as he’s gotten older, a sweet, caring force. He’s always there when I need him.

Notice the red spot on my temple…I often get mild frostbite on my temples when i have a particularly bed headache, from direct contact with ice, for extended periods on end. It heals, but, I usually lose a few layers of skin first.

So, I know I’ve been absentee, but I thought I’d throw a random update your way about what’s been happening around here, and get you up to speed on Rachel-ville, in no particular order:

 

Registration for Fall Classes


I had to register for the Fall Semester. I hate registering when you are at the bottom of the heap for students. It means you register last, as you watch classes fill up, until your appointed time. Thankfully, I got the classes I wanted. One of those classes is, wait for it, “Creative Writing: The Young Adult Novel.” I have no clue what I’m going to write about. But, not to fear, I dreamt that I had a great idea, last night. And, furthermore, I dreamt that great idea included a grizzly bear. Surely, I’ll be all set. As you can tell, I’m even nervous about this in my subconscious.

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

One Halloween, Collin went dressed as a monkey (note the banana sewn to his hand). Every house we went trick or treating to asked him to growl, because they thought he was a bear. It was super annoying. Plus, he had no idea what they were talking about. He had a fucking banana, and a long. monkey tail. Maybe my idea had something to do with this costume?

Speaking of Dreams

For the last three, count them, three, nights in a row, I have also had nightmares that were about my parents. Nothing says healthy and healed from childhood trauma more than your parents not only showing up in your nightmares, but causing you to wake up crying, right?

 

Manicures

I have started, in my 40s, these past few weeks, to get regular manicures. Before this, the only manicure I’d ever gotten, was for my wedding. I know, weird. I’m loving it! I had no idea how pretty my hands could look! Here’s my problems though: how do you talk to the women doing your nails? They are always talking to one another in what I think is Korean. I feel so awkward interrupting them, but I also feel awkward not talking to them. Well, I feel more awkward than usual. The girl I had last week didn’t do a great job. When I show up this week, if they put me with her, can I ask for a different girl, without seeming like a bitch? I’ve always gone by the adage that, in service industries, tip, and tip well; if I keep tipping well, will they like waiting on me, remember me, and do a good job for me?


Peri-menopause

Ugh, speaking of 40s. My periods have been acting wonky for a few months now. This month, it appears that it may not show up at all. NO, I’m NOT pregnant. For the past six weeks, sex has been the farthest thing from my mind, as my leg was so painful, I had considered amputating it. Plus, even if Bryon had caught me in an amorous moment, he’s had a vasectomy; and, he sent his little swimmers back for the six-week check afterward, all deadzo. Alas, I’m well over a week late. I’m perfectly okay sliding into that stage in life. I’ve been begging for a hysterectomy for years. I do not understand why insurance and doctors make this such a difficult procedure for women to get. I understand that it’s major surgery; but, the reasoning is always that, as women, we might change our minds regarding our fertility. Collin’s twelve; I’ve never doubted my decision for only one…in twelve years.

Hot flashes anyone? Just me? Okay.

Hot flashes anyone? Just me? Okay.

Kids…and Lice

Speaking of kids, they bring home lice. Collin was infested with lice by the time we figured out that’s what it was. I could see bugs crawling in and out of his hair, and I was picking them out, regularly, for days! Don’t judge my stupidity! I swear, I thought they were gnats. I kept looking at them, and thinking they had wings. I was sure they weren’t lice. I kept Googling what kind of bugs could infest your hair that weren’t lice. Try that search sometime. Know what the answer is? Lice. It was frustrating. Finally, we shaved his head to a buzz cut, because we were accusing him of just not washing well, and that’s why he kept getting these darn bugs. He ran his hand over his freshly cut head, and tons of bugs fell out. It was…gross. They were definitely lice. It was very obvious at that point what they looked like. That’s when the bells went off. For some reason, they looked different to me, at that point. Yes, I had it too. Yes, it was everywhere. Yes, I’m an idiot. No, I have no idea what I was thinking. I’d have sworn they had wings, staked my life on it. I believe the lice are all gone now. Thankfully, we have a very clean house, and it didn’t take much to disinfect it!

The worst part, to be honest, is that my hair is now past my belly button. Thanks to an irrational fear of cutting it. Getting that damn nit comb through that was a nightmare!

 

---But man-alive did it feel disgusting for a while there!

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

These are OUR personal lice. These came from Collin’s head and he took a pic while looking at them through his microscope. They are pretty gross little fellas, aren’t they?

 

Kids…and Middle School

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Is it any wonder that my little one was looking forward to riding Peter Pan’s Flight at Disneyland? This costume came with a little dagger (wait, no, it cost extra - but, we had it). The dagger made a little “shwing” noise. He carried it around, stuffed in his pants, for three years. He was obsessed with it!

Collin promised me when he was very small, that he would stop growing once he was tall enough to ride the Peter Pan ride at Disneyland. He was quite sincere when he made the promise, as if he’d intended to keep it. That’s how little he was, young enough to believe his own words. I constantly remind him that he broke his promise about growing up. Now that he has clearly broken it, and he keeps getting older, and bigger, I sometimes wish he’d get on with the whole growing up bit, and reach 18, so he’d get through puberty already, because it’s making us crazy. Of course, I know that the days are long, but the years are short, and I’ll miss him when he’s out of here, making memories somewhere else, but someone, anyone, come tell me how to make my son care about schoolwork? His middle school orientation is next week. I can’t believe it. A few days ago, he was starting kindergarten, and now, he’s going to have a locker, be awkward, and go to dances. Time marches on.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

i couldn’t resist this other pic of him at Disneyland from roughly the same age. Look at that little face. Pure joy. I miss those smiles that take up his whole face. Somewhere around 10, it’s like those smiles disappear and regular smiles come on, the ones that our normal faces have. I’m sure I’m as happy as can be in this picture, seeing glee on my son’s face, and i don’t look like him. I miss his full-smile face.

Time Does March On

And on, and on, and on. I have physical therapy for my knee for another full YEAR. Can you imagine that. A year! Sure, they didn’t want to see me for over a week now, due to the whole crawling insects in my hair thing. They were even willing to waive the cancellation fees because they were the ones who were refusing to see me. I was willing to come in, but they didn’t want an infestation; something about all the pillows, sheets, towels and blankets they have there. I get it, I really do. But, I have a full year of sessions to make up for missing this last week. A few weeks ago, I had a session that made me cry, literal tears, all over the place. So, I’m not looking forward to my return, after such an absence. I’m sure it will suck, terribly. I have two therapists: one, whose personality I love, but who is cruel to my knee; one who’s gentle, but who has the personality of a wet blanket. It’s a great combination.

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

Time marches on, indeed…my baby 10 years ago. Can you tell that I’m feeling nostalgic this week, as my baby prepares to start middle school?

My Knee

Which leads me to an update on my knee. I can now bend it greater than 90-degrees. This is pretty good progress. I am “allowed” to go without my brace, but I “should” put it on if it feels “funny,” or “weak.” How’s that for vague?” I’m allowed to start walking for exercise, something I tried on our treadmill this morning, and I could only handle for about ten minutes before my knee said, “well, that’s enough of that, little missy!” My knee is still very delicate; I tried vacuuming the other day, and I had to sit, for three straight days afterward, doing nothing but icing it. Apparently, all the pivoting involved with vacuuming was something I was not prepared for. I’m going to see Billy Idol/Bryon Adams next week (I know, be jealous); the concert venue has about nineteen billion stairs, so I’m a little nervous how my knee (braced or not) is going to handle that little doozie! Plus, I mean, how does one not dance?

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I think that’s about all I can update you on…wait, except that I got an A as my final grade in my class. I am so proud of that! I was so nervous when I enrolled into this program. I didn’t trust my brain. What if it couldn’t handle thinking at that level again, or anymore. Academia is one thing. Harvard is quite another. I was terrified. I almost backed out. I’m so glad I stuck with the idea and proved to myself that my twice-operated brain could handle it. Sure, I have to proofread my stuff a lot more heavily, because I spell phonetically when I type, Sure, I have to take a lot more notes than I used to. I sometimes read a little more slowly. But damnit if I don’t love it as much as I used to. I’m reading academic articles again, for fun, academic texts, and more. I love school. I love learning, and I love what I’m doing. I feel alive again, and I’m so glad I took the risk.

P.S. Thanks for strolling down memory lane with me, enjoying all the pics of my boy when he was small and perfect. He’s still perfect now, he’s just not as squishy-cheeked and cherubic.

Bad Hair Day

Yesterday was a tough day for me. I cried about my hair. I didn’t have a bad hair day, or anything like that. I just re-discovered that I’m bald. And, it’s not even like I’m that bald anymore. I have about two inches of growth, which is just enough to get tangled up in a hair tie, and yank itself back out when you try to wrap it a second time. It’s a glorious length. I’m really excited for all these girls who are under-shaving right now for “volume,” to realize what a stupid mistake they’ve made, in a few months, when they try to re-grow it.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

 

Anyway, I’d put my hair in two braids, when I got out of the shower. This isn’t an unusual thing for me to do, but I guess I never looked at the back before. As I was putting my makeup on, getting ready to go pick up Collin, and then to a doctor’s appointment, I caught a glimpse of the back in the combination of mirrors that the wall mirror and medicine chests give me. It was then, that I realized what an atrocity the shaved portion regrowth looked like.

I spent the next fifteen minutes trying to finagle it with pretty pins, and with headbands. Then, I cried. No matter what I did, it looked terrible. I finally left it the way it was, but that was worse. It suddenly occurred to me that no matter what I did “in the front,” with my makeup, with my clothes, with my shoes, I had this disaster going on in the back that said, “Chiari,” or “brain surgery.”

It became this metaphor for my life: Chiari will always be chasing me. A headache ball is always waiting to drop. Chiari, and pain will always be in the wings, waiting to destroy whatever window dressing, whatever hopes I put on myself. It’ll always be behind me, chasing me. So, I cried some more.

Then, I stopped crying, finished my makeup, and got in the car. As I backed out of the garage, I looked in my rear view mirror and had to do a double-take, I was orange. Orange. That’s right. Orange. Not just a little orange either. I was gross. Apparently, the lighting in my bathroom, with the blown bulb encouraged me to go a little heavy-handed with the peach in my bronzer palette. But, thanks to my setting spray, I couldn’t wipe or blend any of it out. So, now I had bad hair, and I was orange. Talk about feeling self-conscious.

When I picked up Collin, thinking that maybe I was making too much out of it, I asked him:

Mommy: Do you think I look orange?
Collin: No, not really. But you look a little like Donald Trump.
Mommy: Thanks, I feel all better now.

So, I did the least I could do: I pulled my braids out, in the car, and smashed my hair around into knots and blushed profusely until my face was merely a red, splotchy mess. I looked especially pretty, if I do say so myself.

Collin and I had a great-ish afternoon, except his public meltdown at a store, in which he threatened to run out into traffic if I didn’t buy him something, anything, in a vintage store. He didn't run out into traffic, but he did run outside. This was after he ran through the place, touching everything he could, and demanding that I purchase everything there, including beaded purses and hats with veils. No, this isn’t bad parenting, this is a child with a one-track mind that cannot be stopped.

Then, the meltdown in the evening resulted in him dipping a glass in the toilet, and dumping it on me, repeatedly, and charging at me with a closed fist. I was really excited about that one, especially since it was after he tried to pull a towel out from underneath me (since, I had to dry the toilet-water floor), in hopes I’d fall. Not to worry, he'd forgiven me for the cause of the meltdown (me throwing away his special piece of soap), only moments later, when in his rage, he blew his nose too hard, and it caused a bloody nose, which led to a panic attack. He, literally, cannot stand the sight of a bloody nose, and goes into actual panic when it happens, so he needs his mommy to hold him. He'll punch me one second, but then crawl into my lap in terror the next. Nothing to see here folks, totally normal, right?

Oh, and it shouldn't take any kind of emotional toll on me, or on Bryon. We should be able to just flip right along with him. We should be able to continue to speak at whispers when he's screaming, which we do. We should never touch him when he's raging, which we don't, except to protect ourselves or him. We should never tell him that he's bad, just his actions. It's exhausting. And, when he destroys our house, our things, and hurts us, then needs us, we are supposed to hold him like he's still our precious, special baby, even though less than five minutes prior, he tried to punch us. The thing is, he is our baby; he can't help what's happening, but it's so hard, so very hard to remember that.

Overall, it was a pretty terrible day. I felt hideous and my son tried to assault me, yet again. Knock him into next week, right? That ought to teach him, I’m sure. Instead, we’re working again, and more, with some added doctors on amending his initial diagnosis. There’s a high probability that there are other mental health issues that are not being properly diagnosed or treated, and that we need to explore. We are working pretty hard to get him the therapies that he desperately needs.

So, today I’m recovering by doing nothing. I’ve earned it. I miss the dog and I miss the feeling of forgetting about my bald spot. I also miss not being orange. So, I’m enjoying a clean face and a non-baldy head.