Cheese and Whine

In which MJ might whine a little or a lot

I like to process my life through humor.  If I didn’t, then I would turn into a mushpile.  It’s just too intense.  So, we laugh a lot around here.  Laughter and humor are probably one of the best ways to process intensity.  There are only three ways to rid your body of stress hormones: tears, sweat, and laughter.  I choose laughter every time.  Crying ruins your make-up, and sweating ruins your hair.  I kid.  Sort of.  Besides laughing is just more fun.

I’ve been judged by a few people because I don’t see the intensely moving films at the cinema anymore.  I don’t go see the documentaries like “Waiting for Superman”.  Why would I? I’ve already had to testify in front of a judge in the case of a dismissal of a school principal.  I’ve taken on the school board.  I don’t want to sit in a theatre and relive it! It’s hard for me to read intense fiction as well because real life is over the top around here.  I don’t want to enter into more fictional intensity in my free time unless it’s going to be truly meaningful.

So, yesterday I watched the first episode of “The X Files” with Doireann.  She was home sick, and I was on the couch feeling very weird.  I had to see my neurologist yesterday for my six month check-in, and I predicted before I went that I wasn’t going to leave her office unscathed.  I’ve had some weirder than my normally weird symptoms for the past few months.  I am a known under-utilizer.  I don’t call my doctor if I’m ill.  I won’t even go to the ER if I’m having an anaphylactic reaction.  I just stab myself in the leg with my Epi-pen, down two Benadryl, and keep going.  I don’t know why I’m like this.  It annoys my family to no end.  It may be that it’s because I have a family of already very needy kids who need a lot from the healthcare system.  I don’t want to be another reason that we’re paying more medical bills, and I just finished paying off that surgery and hospital stay associated with that “idiopathic” kidney stone! (Psst…it was caused by a 6-week vitamin D blast prescribed by my PCP) I also don’t like the attention.  I was sick for most of my childhood and adolescence.  I hate seeing doctors.  HATE.

So, when I had to tell my neurologist yesterday that I suddenly can’t see very well out of my left eye, I’ve had two weird phantosmia events wherein I’ve smelled something burning accompanied by extreme vertigo, and last fall I had about three weeks of searing pain and tearing in my left eye going into my jaw all occurring at 3:45 AM, I knew that she was going to make her annoyed face.  I was right.  She looked irked.

“It’s stress, right?”

“No, your chronic migraines are stress.  You are not describing migraines.  This is different.”

Well, fine.  I tried to roll my eyes, but my left eye won’t quite roll.  It sort of gets stuck if that’s possible.

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It doesn’t matter that my face will freeze like this. I look fine, right?

She mentioned the words “seizure”, “optic neuritis”, “cluster headaches”, “MRI with contrast”, “EEG”, “prednisone” and some other medication that was entirely new to me.  I whined a lot.

“Not another MRI! I hate them! With contrast this time? NO!”

“You knew coming in with all these symptoms that you weren’t leaving without an MRI and an EEG, didn’t you? It’s been a few years since you’ve had a scan.  An EEG is easy.  I want to be sure you’re not having breakthrough seizures.  That burning smell you’re smelling is neurological.  I need to be sure I don’t need to tweak your meds.”

I whined some more.

“I’m putting you on a coarse of prednisone and verapamil to stop these cluster headaches.  You’ll come back in six weeks to wean off the verapamil.  Side effects aren’t too bad.  Nausea, dizziness…constipation.”

More whining.

“I want that MRI ASAP.  I need to make sure that you don’t have optic neuritis.  Your symptoms are bothersome.  I’ve got to rule out MS.”

“Aw, come on!”

What can I say? I am a horrible patient.  She smiled at me.  I did all the neurological testing like heel-toeing it for her, touching my nose and her finger, and all the rest of it.  I did well.  No drunk walking here!

I am, however, not enjoying my prednisone and verapamil.  I feel WEIRD.  Sort of wired, hot, and tired at the same time.  My eye still feels funny, but the good news is that the trigeminal nerve that was causing those cluster headaches does not hurt this morning.  I can directly press on it, and I don’t feel a thing.  Thank you, prednisone! For the past week, it has been throbbing and keeping me up at night! Okay, okay, so my neurologist knows what she’s doing.

Now it’s just a matter of showing up for the testing.  Ode to joy.  I really don’t like EEGs.  At least it won’t be a sleep-deprived EEG.  At least I don’t think it will be.

Okay.  I’ve whined.  I’ve complained.  I’ve taken my morning prednisone dose.  Hey, it’s Buy One Get One Free at Caribou today in celebration of spring.  I think I’ll get a coffee involving lots of whipped cream! It’s not cheese, but it’s dairy.  That counts, right?

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Yes. Yes, I would!

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18 thoughts on “Cheese and Whine

    • Thank you! I will being enjoying my coffee ::cough:: whipped cream! I’m trying to take care of myself, but it feels hard sometimes. I usually forget, hence, this nonsense now.

      • 6 day blast. It actually makes me tired and nauseous. I know that it can make people hungry, but I just want to eat nothing. Blah…

      • I am trying. I’m actually resting a bit, trying to respect my signals. It’s hard. I don’t like to sit around, but I was so tired yesterday, and I am not enjoying not being able to focus out of my left eye. It’s annoying more than anything. Alas, I am very grateful that the trigeminal nerve pain has abated. I’ve been on prednisone many times. My allergist likes to give it to me when I have an allergic reaction. The higher doses cause my hair to fall out, and that’s most likely why I avoid the ER. He’ll give me a five day blast of 60 mg. No taper. It makes me sick, but he doesn’t care. He just scolds me and says, “Don’t die!” Fine. Don’t die.

      • Oh, my gosh. I’ve been on 60 mg (for Lupus) but the doctor tapered it off very slowly. I can’t imagine going from 60mg to zero…it’s hard enough to taper off. You must have been in a lot of physical pain without tapering off.

      • Yes. The pain was awful. I have a fibro DX that I don’t like to talk about because it annoys me. It just feels like a big inconvenience. Anyway, when I stop the prednisone after a 60 mg blast/no taper, the all-over body pain is bad. I can feel my hair follicles! It’s the weirdest sensation. I can hardly wear clothing. It’s hard to explain to someone how it feels, but it’s not something I want to repeat. So, I try very hard to avoid those allergic reactions. I have an avocado/kiwi/chestnut allergy linked to latex. It’s very severe, and, sometimes, there is cross-contamination in food at restaurants. Chipotle restaurant is the worst! I hope your Lupus is under control. Those autoimmune diseases can be so unpredictable. My mother has MS so hearing my neurologist throw that term around in my presence caused me to just want to throw a fit.

      • The lupus is fairly stable…try to pace myself…have a great rheumatologist.
        I’m still stunned that 60 mg wasn’t tapered…my rheumatologist tapers by increments of 5 mg then 2.5 mg as we are finishing the process.
        That would be challenging to caregive under those circumstances.

      • It is, but I live with chronic migraine disease so I’m usually in some sort of drug-induced stupor about 12 days out of the month as it is. If I go a week without a migraine, I’m doing really well. Pain is a part of my life. I wish it were different. I’ve done just about everything I can do short of eating only air.

      • You are right. The invisible illnesses and pains are hard to describe and understand. Lupus, fibro, chronic migraine disease….It really helps to have doctors that understand. If you’re not trembling, looking horrible, and walking with a cane, then people assume you should be up and at ’em daily. Today, I’m in my robe still! I’ve been up every morning at 0345 for a week with those cluster headaches. Now that I’m not in pain, I’m freakin’ exhausted. But, it’s okay. It may not be normal, but it’s my normal. And I’ll be up and at ’em tomorrow! Hurray! Thanks for chatting!

  1. Take care of you, please! I need my daily dose 😉
    MRI – just a nap in a really tight, loud space – how do you not enjoy THAT little break?
    Also, within the first 5 episodes of X-Files is my FAVOURITE creeper…very gory…glowy eyes. Might make you feel weirder…

    • I think we watched that episode last night! The humanoid on a liver-ripping rampage? Yeah, we had to watch something less creepy before bed. Oh, I know, I’ve had so many MRIs before what with having a seizure disorder DX. The neurology folk LERVE to dish those out every time I sneeze differently. This might be my 20th or something, but I don’t like them. I don’t like being poked and prodded or scanned or messed with. I think it comes from being poked and prodded for most of my life. But, it’s not surgery or a biopsy. So, I won’t fuss about it. I’m trying to take care of me. I don’t know why I’ve developed trigeminal nerve inflammation, clusters, and this new eye thing. I like to think it’s because I’m a high achiever. 😉

  2. It is never easy to live with invisible pain, invisible illness. I hate doctors as well. I hate the idea I am a burden to my family or my care providers. But and it is a big one, knowing causes means you can be proactive. So do what you can to know the causes.

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