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.

Pain Management: Lifesavers

I kept falling asleep while I wrote this…and when I tried to proofread it, the same thing happened. So, oh well! It is what it is.

Remember how I mentioned pain management last time? How I said I’d had to call, almost immediately after surgery to say, “Yo, this medication isn’t cutting it, can I take more?” And then, I had to go see them, again, to say, basically the same thing?

Being bed-bound has its advantages. Look at my companion. Like the cats, he never leaves my side. He thinks that the headphones make him look like an official “gamer,” and he made me take his photo.

Being bed-bound has its advantages. Look at my companion. Like the cats, he never leaves my side. He thinks that the headphones make him look like an official “gamer,” and he made me take his photo.

 

Well, I had to call again. It still wasn’t strong enough. I was told to take a different combo of the same meds, at a different time. Because of the amount of meds this would require, I needed a refill almost immediately. I know, I know, it sounds like I might be a giant baby. Or, I am craving my Dilaudid and Oxy combo, and becoming some kind of fiend. Or, the most likely scenario, the whimpers and sobbing that came out of me, as the meds wore off, are indicative that the medication is both not strong enough, and not lasting long enough.

 

So, now I was on visit/call number FOUR, to pain management. This time, I was scheduled to see the actual doctor, not her PA. This was the big time. I was both afraid, and excited. I was afraid, because I knew I had to tell her that I’d been taking one extra pill per dosing period. I knew that was important for her to know, so she could dose me properly, when she adjusted meds; but, this was the first time I’d ever taken more medication than I was prescribed. To put that in perspective, I’ve been on opiates of some kind since 2014. In five years, I’d never taken a single extra pill. That’s how brutally painful this surgery has been. So, this scared me, because I was afraid she’d think I was taking them for the wrong reasons. In reality, if I didn’t take them, I was shaking in pain. I was excited too though, because I thought that she might be able to help me. There is nothing, nothing, nothing that will ever shake my optimism about seeing a doctor when I’m truly sick. I continue, perhaps blindly, to believe deeply in the curative power of the white coat, and the deep humanitarian desire to help others that they all share.

 

Doing homework, with my judgemental pal. He helps me do well, otherwise he has an opinion about it.

Doing homework, with my judgemental pal. He helps me do well, otherwise he has an opinion about it.

Sitting in the waiting room was brutal. I’d gotten close to my dose time while we were sitting there, so I was in agony. It isn’t that I couldn’t take my meds while I was at the doctor; they have water, and I packed my pills. It was that I couldn’t take them for another hour or so; I was only close to my dose time. Close means my meds had worn off, and I was suffering. The worst part was that we had sat there, patiently, for forty-five minutes past our appointment time, before we asked the front desk if something had gone wrong.

 

They, of course, said I was next, and I’d be called momentarily. You could see them scrambling behind that little window. Someone had clearly misplaced my chart. I’d never have been called, had Bryon not gone to the front desk and asked about me. They called me back, almost immediately…to what amounted to a spare stock room, not an exam room. Sure, I was next. It was absolutely planned this way. Except that the tech that called me back profusely apologized for misplacing my chart and causing the whole thing. I do love when people apologize for messing up when they are in a face-to-face customer service industry, it makes all of the difference in the world. I was immediately no longer frustrated.

Loki’s opinion of my homework is far less strict. He feels that as long as I do my best, he’s cool with it.

Loki’s opinion of my homework is far less strict. He feels that as long as I do my best, he’s cool with it.

 

Anyway, when the doctor came in, a doctor who I’ve never met, yet who is the doctor I’m billed under every time, this is how the beginning of our conversation went:

Now that Bryon has gone back to work. Collin is my day nurse. I usually don’t wake him up until the God forsaken hour of 10 am. But, even then, it’s too early for him, and he comes dragging into my bed for these precious snuggles. I had to break my leg for this, but it might have been worth it.

Now that Bryon has gone back to work. Collin is my day nurse. I usually don’t wake him up until the God forsaken hour of 10 am. But, even then, it’s too early for him, and he comes dragging into my bed for these precious snuggles. I had to break my leg for this, but it might have been worth it.

 

R: I don’t know you. (yep, this is how I greeted her). I mean--sorry. Probably should’ve said something else, it’s just that I have been seeing someone else. Maybe---

 

Dr: Probably Diana?

 

R: Yes! Diana!

 

Dr: Don’t worry. I oversee all my patients. I’ve read your chart from top to bottom and I just reviewed it now. I see your meds are fucked up for this. Tell me about your surgery. It looks like hell.

 

R: (Shocked pause….then told her about the surgery).

 

Mew is enjoying my convalescence as well. He spends a lot of his day hiding under the bed, so now that there is someone IN the bed that he hides under, he is quite pleased to have a visitor.

Mew is enjoying my convalescence as well. He spends a lot of his day hiding under the bed, so now that there is someone IN the bed that he hides under, he is quite pleased to have a visitor.

I thought I would never find a doctor I loved as much as Doctor W in California, but she’s quickly becoming a close second. She swore, so goddamn much, I was impressed. I’ve never seen a doctor behave like that. But, It wasn’t he swearing that I liked, it was the matter-of-fact way that she dealt with my situation.

 

More homework. This is my general plan-ish for my big paper. It took me days to come up with this plan/idea that looks like a mess. Going to start working on it this weekend and see if it falls flat.

More homework. This is my general plan-ish for my big paper. It took me days to come up with this plan/idea that looks like a mess. Going to start working on it this weekend and see if it falls flat.

When I told her that I was taking an extra pill at every dose, she wasn’t mad, she didn’t judge me; she said she was glad I told her because she needed that info for her math to figure out how to plan to dosing for what she wanted to prescribe next. She was pissed that her staff of PA’s didn’t think of putting me on a long-lasting opiate, instead of short-acting ones, that work, but have the nasty tendency to provide peaks and valleys of pain relief and absence of pain relief for patients in acute pain.

 

More joyous cats who are happy I’m in bed.

More joyous cats who are happy I’m in bed.

I told her that I’d specifically asked for an extended-release opiate when I came in, before my surgery, and we discussed the plan for pain relief. The doctor got angry when she heard that. A few “F-bombs” were dropped. I explained that, based on my brain surgeries, I knew that had been what worked the best for me, for serious surgeries; so, it was my best guess here.

 

Now, four weeks in, I was up to 80 mg of oxycodone, and 16 mg of Dilaudid a day. That is an insane amount of opiates. It was enough to be getting dangerous, especially when combined. The worst part was that I was still in pain, despite the massive amount of drugs I was taking. It seems impossible, but I was. I could kiss my doctor for telling me that it wasn’t, and that it was perfectly reasonable to be in this kind of pain with short acting meds, after this kind of operation.

 

She scribbled on a piece of paper for several minutes doing all kinds of complicated math. She mumbled half addition and multiplication problems randomly, drew arrows all over my intake page, crossed-out, and finally came up with an answer. She prescribed an extended-release opiate, in the 36 mg dose, which happens to be the largest it comes in (the pharmacy had to order it). I take it twice a day (every 12 hours). Additionally, she prescribed a short acting opiate for breakthrough pain that I’m allowed to take up to three times a day. Viola, a plan that should work.

A rare sight: all three cats in the bed, in close proximity to one another. Homer hates Mew, and Mew harasses Homer. It’s all very social dynamics of cats, in real time, developing. I’m always reprimanding them, and giving them serious lectures about how to treat our friends. They don’t listen.

A rare sight: all three cats in the bed, in close proximity to one another. Homer hates Mew, and Mew harasses Homer. It’s all very social dynamics of cats, in real time, developing. I’m always reprimanding them, and giving them serious lectures about how to treat our friends. They don’t listen.

 

She ended the appointment with this:

 

“You call here if there is a shitstorm, and we’ll fix it. This amount of pain is unacceptable. Un-accept-able. We’ll get through this. Together. I promise.”

 

There’s no way of explaining how awesome it is to feel like your doctor is totally on your team. I felt like I could pick up the phone, at any time, call, and say, “it still hurts, help,” and she’d drop everything to call in something new. I needed that feeling, right then, after struggling for so many weeks.

 

So far, for the last few days though, I think we may have found the right balance. The problem will be that getting off the extended release opiates is a different story than getting off short acting opiates. It is a whole different animal, and a pain in the ass. I’ve done it before, and I can do it again, but ugh. All I can say is that at least it’s not Fentanyl.

 

Alas, this is where we are at, at the moment. I’m finally on extended release opiates, and I just started PT, which is brutal. I cried yesterday, but she didn’t stop. I think she liked watching me writhe. I am still taking my Harvard class, and kicking ass in it. Yeah, that’s right, broken leg and all, I’m doing awesome. Nothing brings me more joy than school. I’m crazy, I think. I wish we had class every day. I can’t wait for next semester, when I have two classes. It will be a dream!

 

I am up to being encouraged to bear 25 lbs. on my broken leg, which doesn’t sound like much, but the goal is to be off the crutches in about a month. So, between the exercises that PT has me doing at home, the massages that they want me to do, and just regular aches and pains of healing, my leg is giving me a run for my money. Thank goodness for new pain meds, and a pain management doctor who cares about pending shit storms.