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Well, my blood pressure isn’t high, at least?

I have a headache from trying to rectify the problem I’m about to share, so bear with me – this may sound a bit disjointed in places. I’ll try to keep it simple.

My blood pressure was really great until around 2009/2010, when suddenly it began hovering around 140/100. That’s 20/40 higher than the highest recommended for someone my age. I started on BP meds, and after a few adjustments, I found one that worked really well without making me feel too tired.

In addition to the Lamictal, I was put on Zanaflex to help me sleep. It’s a muscle relaxer – and, well, the heart is a muscle.

My blood pressure has been hovering around 90/60 for the past week or so, during the day (even at “normal peak times”) – that’s the lowest recommended blood pressure for anyone.

I talked to a nurse friend, and he said, “If systolic goes below 80, you get your ass to a hospital.” At one point, it got down to 85, but that was at 3am, which is the time your BP is lowest, so I held out until later in the day, and it went back up.

When I move around, my BP goes up to around 100/70, which is significantly better, but moving around is also wearing me out quickly, so I don’t do it as much.

Last night, I took my meds, along with my Zanaflex, and proceeded to doze off while on my laptop, as I’m wont to do. Forrest came in and saw me, and was like, “Hey, go to bed.” I had to pee (my kidneys are working overtime – that’s another post for another day), so I got up, and immediately regretted that decision. I made it to the bathroom, got back into bed, and had the thought that I should probably check my BP, because I felt…really wrong.

The first reading was around midnight, and was 78/49, with a pulse of 78. Okay, that’s in the danger zone. I was a bit nervous, but also REALLY tired, so I wasn’t sure what to do.

I waited a few minutes, to see what my resting BP was: 72/42, pulse 61.

Obviously I’m alive, but that scared the crap out of me. I know why it’s happening, but it needs to stop, so I’m going to the doctor this afternoon to get it taken care of, because my doctor’s office was like, “HEY. GET IN HERE.”

I know that below 50/35 is pretty much coma to death. Hence the doctor’s urgency. And I know it was probably stupid of me not to call someone last night. I have no real defense for that – I was tired, and was out of it from the meds (and likely the low blood pressure, as well).

Sooo that’s happening.

We’ll see what happens at the doctor, I suppose.

A heart so big, God wouldn’t let it live – in Memory of Donna.

When I first joined Opera Memphis, I was apprehensive. I was young, I didn’t know a lot about opera, and I was basically there to sing (after having auditioned due to peer pressure…the friend who dragged me along ended up not showing up at all), but had limited experience with performing in a serious musical group. I’d sung and danced in youth choruses, and did karaoke constantly, but that was pretty much it.

Basically, I was nervous, and I didn’t really know what I was doing.

A woman name Donna befriended me, helped me, showed me what to do, consoled me, talked me through things, and even led me to be a more self-advocating patient. She’s part of the reason I finally fought to get a hysterectomy, which may have actually saved my life. She gave me a coin with a Bible verse on it that I carry with me to this day, 7 years later, because it means so much to me that she gave it to me. I was in a really low place, and when I feel bad, I look at this coin, and I feel better.

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It’s either in my purse or in my pocket. I’ve literally carried this around for 7 years.

She did so much for me in the few years I was in Opera Memphis (in Samson and DelilahDon GiovanniTurandot, and The Scottish Play), and I took it for granted that she would always be around…that when I got well enough to join again, she’d be there.

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Turandot, dress rehearsal.

Donna Hettinger-York lost her battle with breast cancer, which metastasized to her bones, on September 19, 2014.

She died at home, with her family, which was her wish.

I’d gone to see her in the hospital last Thursday, but she was sleeping. I left her flowers and a letter, sat with her for a while (my friend Jason Vawter drove me, and I’m so grateful to him for that), got an update from the doctor, and left.

She looked so frail, and her sleep was restless. I know she was in pain, which is another reason I didn’t wake her up – sleep is precious when you’re sick, and I know that.

I wish she’d been awake so I could talk to her, but I’m just glad I got to see her.

There are people who you meet that just leave an impression on you. It doesn’t matter where you go, whether you keep in close contact, or even if you knew them for very long. You just have this feeling about them, that they’re great, and when you hear things about them, you feel it. Good, bad…everything about them affects you from afar. There are a limited number of people like that for me, and Donna was one of them.

It didn’t matter if she was in a bad mood or not, she would make the effort to try to make other people feel better. Her nature was to be a nurturer, and while she didn’t have biological children of her own, she was like a surrogate to so many. I even called her my “opera mom,” because of how much she helped me.

She was kind and hilarious. She’s one of those people that I honestly can’t think of anything negative about, which is rare. You know how folks tend to wax poetic about people when they’ve passed, like it’s an insult to their memory to remember their flaws? There’s nothing fake about my memory – Donna was a great person, period. Even her flaws lent credibility to that.

One of the costumes for The Scottish Play involved chest plates for the female chorus that featured molded boobs. Donna stuck a yarn tassel to hers as a gag, and accidentally left it on during a dress rehearsal. I was a super in that show (non-singing human scenery), and I nearly lost it trying not to laugh when I realized what had happened.

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It had fallen off by this point, but look at that costume, and the sass on her face. She was the sassiest.

That was Donna. Just goofy as all get out, and so unabashedly herself.

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Before the second act of The Scottish Play on opening night.

This is how I remember Donna.

This is how I always want to remember Donna.

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And if you were with me tonight

I’d sing to you just one more time

A song for a heart so big

God wouldn’t let it live

May angels lead you in

Hear you me, my friend

On sleepless roads the sleepless go

May angels lead you in.

Lamictal apparently produces vivid nightmares.

I don’t remember that side effect from last time, but I was also not sleeping very well, anyway (school, wedding planning, etc.), so there’s no telling.

But one of the things I looked up was whether Lamictal causes nightmares, and lo and behold, there were so many links from forums of people complaining about it (mostly women) that I’m half-convinced that if I keep taking this stuff, and it doesn’t get any easier for me to handle, I may never sleep again.

(Monday night, I got 3 hours of restless sleep before waking up at 4am and just…being awake. I took meds to help me sleep on Tuesday afternoon, because I was so miserably tired. Tuesday night I slept like the dead, but only for 6 hours. So far, I’m not exactly happy, and I even switched to taking the dose in the morning to see if that would help. Hah!)

So the key part of this nightmare – the part that woke me up – involved a zombie-thing. It was very Silent Hill-esque, even though I’ve never played any of those games…I’ve only seen a trailer or two of P.T. (the new one).

I had a goal, like a video game, and while it was happening, I remember dream-me thinking it was weird, but I had to complete the task in order to proceed.

That task? Destroy the head of a dead girl – which for some reason was hanging on the back of a door leading to a short hallway (i.e. a trap). The head was hanging on the side of the door in the hallway, which meant that if I did the tasks wrong, I was trapped in a very narrow space with what would be the vengeful spirit (or something) of this girl.

It was a little like F.E.A.R., now that I think on it.

Except for the tasks I had to complete, which were just gross. So I’m going to put them under a cut.

Continue reading Lamictal apparently produces vivid nightmares.

My rounds of testing are done, I have my results, here we go.

First, when my neurologist gets comfortable with someone, he tells dirty jokes. It’s hilarious, especially given that his delivery is a bit different due to his accent.

Alrighty, so last week, I had an EEG first thing in the morning, and went to the hospital for my MRI, MRA, and corotid ultrasound with gobs of glue in my hair. That was fun. I hope to never have another EEG.

My insurance canceled the ultrasound, I don’t know why, but whatever. I had the MRI and MRA, and was able to listen to music through headphones while in the machine. I couldn’t HEAR the music when the machine was pulsing, but whatever. I brought an eye mask and my mouth guard, and it went okay.

The results of that: everything’s normal, but all of my sinuses are inflamed and full. So I have a referral to an ENT forthcoming, which I needed, anyway, what with my left ear being a butthead.

I went back today, got the EEG results, and it was normal, as well. A bit of weirdness that would indicate that a seizure disorder may be present, but I didn’t tip any warning scales during the test. I knew that, already, but ah, well. If I have another episode, I suppose we’ll film it and just bring it with us next time.

Then I got another set of injections for my hips (that needle is huge, but it doesn’t hurt at all compared to the cortisol and numbing agent going through my muscles. Ugh…), and started the EMG test, more popularly known as the nerve conduction test, in my legs.

The first portion had the doctor sticking conductive pads attached to wires to different parts of each leg and foot, and then sticking what looked like a stun gun on other parts of my legs and feet to test my nerves. There’s definite damage/impairment in both legs, but the left one is worse. My feet were jumping around on some of the tests, and I couldn’t stop laughing because it felt so weird.

Then he took the conduction needle to test my muscles, and while it wasn’t really painful, having a needle stuck in the top of your foot while having to flex it backward is not really my idea of a good time.

The muscle test showed results that also supported the reduced nerve function in my legs.

It’s suspected that I have a pinched nerve in my back, but he’s not sure which one, and it would take another MRI to find. Fuck that. They were supposed to give me exercises for it, but they forgot, so I’m going to do some chair yoga or something, I guess.

I had to stop the Topamax because it made me feel faint, but in the interest of having me on something that could potentially help migraine and seizure, I’m now on Lamictal. I’ve been on it before, but I was also on Risperdal, I think, and got a bad rash on my leg. I don’t know which drug did it, but I guess we’ll see in the next week or so if it was the Lamictal, because it’ll do it again, faster, if I had that side effect, before.

I’m not going to be on a huge dose of it, so it’s truly preventative, not a treatment. So that’s good.

I was also given Imitrex to take if I get a migraine. Fabulous.

I go back in 6 weeks for an update and to see how things are going, and I will be going to the ENT sometime in the next few weeks, so hopefully we can get my sinuses taken care of. Since I’m on a bunch of antibiotics and an anti-inflammatory/immunosuppressant, already, unless there’s some allergy pill that will help things clear out (I kind of doubt it, but it’s worth a try), I may have to get a scope surgery to clear everything out. And these are ALL of my sinuses, because my body never does anything half-assed.

So there you have it. Everything is hopefully treatable and could be gone in a year or so, unless for some reason the nerve being pinched caused some sort of permanent damage.

Butt/Face Twitter

I can’t imagine what Google is going to bring my way with a title like that…

I’m on Twitter, and I’m fairly active, most days, with a smallish group of folks that comprise the majority of my timeline. We don’t segregate ourselves or anything, we just get along really well, so we end up chatting and sharing links and whatnot throughout the day.

To lead into this, I believe I’ve mentioned Sophie (my cat) having horrendous gas before, but if I haven’t, well…Sophie has horrendous gas.

She also likes to climb up onto my chest while I’m computing, as seen in this photo:

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Squeaky is not amused.

Now, usually she sits cross-ways, with her head further up on my shoulder, which, because she’s so small, results in her rear end being under my chin. This wouldn’t be a problem, except…she’s a gassy little beast. (I end up gag-laughing nearly every day, but I’m not going to deny her cuddles, because they help me as much as they help her.)

I share her fartventures on Twitter because I have no shame (I mean, neither does Sophie, clearly), and also because the folks I interact with think it’s funny.

Now we get to the relevant part of the story.

My handle on most sites, these days, begins with “Squeaky” because of this blog. I got used to it, so there it is. Twitter is no exception. Usually it’s just a plain old name, no flare at all, sometimes I change it because something funny has happened. Other times because I’m in a mood. No biggie.

Sophie was in “the position” this morning, while I was in the middle of talking to a friend of mine through direct messages, and she let out a squeaker. I nearly peed laughing so hard, and I think I actually hurt Sophie’s feelings a little bit (I can’t really tell – she looks perpetually angry).

Anyway, because the first part of my nickname on Twitter (the site I was currently on) is already “Squeaky,” I just added “Butt” to it, because…what the hell else would I do?

The friend I was talking to laughed about the cat, and we chatted a bit more, before I realized that the end of her nickname…was “Face.”

And I was like, “Hey, that’s kind of funny, we’re both different ends of a torso!”

[pause]

“Oh, my god. We’re the butt/face towel!”

butt face towel

I currently own one, for some reason. But this is a thing, yes.

Commence immediate hysteria, because it’s early and we’re both immensely silly people when given a reason.

And that’s the story of how I became one half of a novelty product.

 

I hate double-posting from Facebook, but some folks don’t go there.

I started taking Topamax and Zanaflex on Tuesday night, and the Zanaflex does well to help me sleep for a few hours a night, but my bladder (more on that in a bit) and Sophie (in her usual manner) keep me from sleeping well.

The Topamax has been an adventure.

First it just made me a bit nervous. Then it made my lips tingly. Then it removed my appetite. Then my appetite kind of came back. Then my appetite left again. Then I started getting kind of dizzy. Then I started feeling faint easily. I don’t plan on taking it tonight or tomorrow, and am calling the neurologist as soon as possible tomorrow to discuss it, because, well, fuck that.

(I checked – both Zanaflex AND Topamax have this in the “call your doctor immediately” category, soooo…either way, WELP.)

I’ve also lost 8 pounds since Tuesday. It’s mostly water weight, because Topamax is a diuretic, and I’ve been drinking at least 72oz of water every day…and my bladder has been…active.

am thirsty, but I also have to drink the water, because Topamax is also known for causing kidney stones, so yay.

 

My barrage of neuro tests starts next Monday (the 8th) with the EEG first thing, then the MRI, corotid ultrasound, and MRA in the afternoon.

 

Wheeeeeee.

An almost terrible thought, but I’m not even a little bit sorry.

I’m on Topamax to manage migraines, per my neurologist.

I’ve been on it before, back in 2007 (in fact, I mentioned it when giving an inmate shit for claiming he was too fat to execute. Wow, I forgot how ruthless I can be), and the main side effect I remembered was that it made my face all tingly.

I’m feeling that, and some nervousness, and I was also instructed to drink lots of water, because apparently it’s really hard on your kidneys. Since the other meds I’m on are also hard on my kidneys, I’m drinking a ton of water.

Since I hadn’t heard of the kidney thing the last time I took it, I looked up the side effects on rxlist, and saw that weight loss was the highest-reported side effect for folks who were on my dosage in a double-blind study.

The reason: Topamax kills your appetite.

Now, I have to eat food to take my medicine. That’s unavoidable. And I have to eat to live. And I also just enjoy food. I like how it tastes. I have no intention of starving myself.

However, if Topamax makes me occasionally feel like a bite or two of something is enough, I’m SO OKAY WITH THAT.

Why is that kind of a terrible thought?

Because, well, eating disorders. They’re not great.

But I’ve gained weight since my hysterectomy, I’m starting to look unhealthy, and part of it is because my nausea has me eating as much as I can when I can, because I’m not sure how much I’m going to keep down…so when I DO keep meals down, there’s too much food in there.

So yeah, I’m pretty damned excited about a medication that might make me feel a little nervous, and might make my face a bit more numb, but also keeps me from pigging out…and that’s just a bonus to the original purpose of hopefully getting rid of my migraines.

Yes, I did just write an entire blog entry because I’m excited about a new medication possibly causing me to lose weight.

You’ll live.

Neurologist appointment went well in an unexpected way.

I can’t type very fast, so I’m going to say what I can as briefly as I can.

I finally went to a neurologist, today. I got a recommendation from my LLMD, had an appointment, blahblahblah, filled out a ton of paperwork, etc., and finally went back to see him.

The first thing he does is say, in the most convoluted way possible, that he gives zero fucks about Lyme, because he’s not an infectious disease doctor. He then encourages me to see an IDMD as soon as I can so that I can confirm or deny Lyme…even though I’ve had positive tests. But whatever. I’m there for nerve stuff, so he and I are in agreement on that being his primary concern.

He gave me the usual battery of tests – push up, push down, squeeze his hand, stand up, sit down, etc.

Then he poked me really hard on either side of my skull, just at the base in the back. It hurt quite a bit, and I said as much.

Then he told me to walk over to the exam table, and while I was walking, he grabbed my arm and then poked me really hard on my hip…then he did the other side. It hurt so badly I actually started crying.

He came to the conclusion that the pain in the back of my head/neck is from stress (durrr), and that my outer hip pain is from bursitis (??). The former we’re going to work on with exercises, and I’m also going to be on migraine treatment, and the latter caused him to recommend a nerve block with cortisone. It was basically either that or an MRI of my pelvic region, and I figured a shot couldn’t hurt.

He gave me the test for inner-ear calcium deposits, and it was negative, but I did get dizzy.

I’m switching off of some meds, trying some new ones, and going back next week for an EEG (the seizure test…not looking forward to that one) and an MRI (to check for abnormalities), and then the following week I’m having an EMG (nerve conduction study – the pins-in-the-legs test).

Now, here’s where things are interesting: He brought a nurse in to help with the nerve block pressed on my hip again to ascertain where the pain was the worst, and then did the injections. They hurt like a bitch. My legs felt really weird.

Then he did a battery of tests to check the immediate response, and I found I could cross my legs without my hips hurting. That was kind of exciting, but then I put both feet on the floor, and immediately started crying.

I could feel my feet for the first time in over a decade.

There was no tingling, and only a bit of muscle pain. I could feel the texture of my socks, the carpet under them when I slipped my shoes off, and I could feel the flex when I moved my foot around. It was so amazing.

It only lasted about 15 minutes (back to being numb, again), but it gave me hope.

 

If most of my issues are a TREATABLE neurological condition, then I will get better.

The tests in the next couple of weeks are supposed to help with that end, though.

 

I have hope. It’s important. I am not looking forward to the tests, but I need them. I want them. I want an answer, even if the answer is, “well, it’s not THAT…”

 

So hooray for doctors doing some good!

An entry that’s not Lyme-related. Y’all must be excited.

I’m going to talk about Ferguson, MO, for a second.

Don’t worry, I’ll be quick.

First they came for the Communists,

and I didn’t speak up,

because I wasn’t a Communist.

Then they came for the Jews,

and I didn’t speak up,

because I wasn’t a Jew.

Then they came for the Catholics,

and I didn’t speak up,

because I was a Protestant.

Then they came for me,

and by that time there was no one

left to speak up for me.

Keep that in mind, no matter who you’re blaming for this.

 

Impressive.

I’ve only been on antibiotics for a week and a half, and I already have a sinus infection.

Last time, I think it took quite a bit longer for that sort of thing to occur.

In addition, my side effect symptoms have been as follows (differing severity each day):

  • dizziness
  • joint pain
  • cough
  • headache
  • weakness
  • nausea/vomiting
  • decreased stamina
  • air hunger
  • thrush (hooooray)

So I’d say it’s a safe bet this was necessary, as much as it sucks to have that confirmation (if I didn’t have any side effects, it would mean the antibiotics had nothing to attack, meaning my Lyme wasn’t really back, my body was just being stupid).

I’m somewhere between “okay yay i guess” and “uuuugh” about it, but it is what it is.

Seriously, though, I kind of want to have my sinuses tapped to see what, exactly, is up there.