Sunday, November 11, 2012

Snarky vs Snarky vs Snarky

I have been in bed....let's see...going on six hours, with no sleep. There were two moments when I was almost asleep, then I heard a very loud *CRACK*, then later a series of cracks, coming from my skull, and both times I shouted, waking Dan. I am exhausted. I'm still taking pills every four hours. My circadian rhythm is all messed up. When I lay down my head makes crackling sounds which I'm very familiar with from the first brain surgery, but I don't think I'll ever get used to it. Not to mention the right side of my body is still mostly numb.(Sometimes it'll tingle a little, the whole side, or just in specific locations.) It's weird when you can feel none or 10% of your hand, or arm, or half of your bum, or your foot. Hard to get used to that feeling. It's the feeling that I used to get just as I was having an aura - just before a seizure - that's confusing. Now I'm constantly reminding myself, 'this is just a continuous false alarm. Nothing to see here. Mentally move along.'

I've been off the anti-seizure medicine for a few days (5) and the hallucinations have not returned. My skin is clearing up as well, which is fantastic! I'm not as depressed, just completely exhausted. Even though I clearly need more pain medication to function (remember, I required the equivalent for a 300 lb person to function while at UCLA - double my weight.) I can not get anything until I can get into the Perioperative Pain Clinic at the UW, which is a maze of insanity. Call this doctor, call insurance, call the clinic, call to see if they received the fax, "it's at the call center", "call back Tuesday, Monday's a holiday". I JUST WANT THE PAIN TO GO AWAY. It's ridiculous. I'm taking muscle relaxers, one every four hours and Aleve every 12 hours, but that's it. The thing that's crazy is that the muscle relaxers don't have much of an effect. They slightly lessen the pain, but I'm still at the least a 6 out of 10, other times I'm at an 8.5. What gives? Our government and hospitals are so concerned about the over use of pain meds that they are hesitant to treat me. It's horrible. I just had brain surgery, let's get real. From the time I was released from UCLA I had 13 days of pain medication. Not even a full two weeks. I didn't abuse it. I never took more than was prescribed, I tapered off to make the pills last longer so could function for the trip home.

I hate that I feel physical pain so deeply - twice as intensely as i should. I don't want to take the pain pills. I normally don't even take over the counter medications, other my herbs or supplements, but those are to fight my brain tumor.

This is my second time at the brain surgery rodeo and both times I have had horrible lingering pain issues. A side: while I was at UCLA in the neurosurgery ICU, three days in, the "pain team" came to assess me because I was so miserable, quietly sobbing most hours of the day. The head doctor asked me a series of snarky condescending questions, then finished with, "Please don't be offended *snarky* but do you take street drugs recreationally? (I chuckled.) Because it has been widely been researched and documented *snarky* that brain surgeries are not painful. I mean, you MAY or MAY NOT be having a lot of pain." My instant response (after three days of sobbing unless they gave me extra shots of pain killers on the hour with pain pills every two hours) was in a very direct and cold voice (a voice used in less than 5% of my interactions in my 32 year life - typically reserved for a 'behind the back' rant voice), "Oh no. I am IN pain. And I understand your concern about the problems with pain pills, but I am a runner, I'm healthy, I take a lot of supplements and no. No, I am not I'm not using 'street drugs'. I'm just in a lot of pain. From my surgery."

Not wanting to be rude - what would that do, nothing - I let him leave. They assessed and upped my meds, thankfully. I wished later (always how it works) I had said to him, 'Have you had a team of specialists slice through your skill, the protective layers, the muscles? Have they dug around in your brain stimulating various muscle groups with electrodes sending electric shock waves through your body to verify which is tumor, which is brain matter? Have they differentiated between the two then physically separated, then cut, and cut, then pushed it all back together layer by layer? Have they cut out the old scar from the FIRST CRANIOTOMY stretched the skin to cover your skull, then tightly sewn the halves of your scalp back together and then call it good?'

It was a good lessen for me to remember; if I haven't been through something, I have no idea what people have gone through. Each situation is completely unique.

I'm attaching three close-up photos of 2/3 of my sutures. They are finally out! After a week of calling, faxing, and emailing every day between Danny, my dad, my mom and me, we finally persuaded UW to remove them so that I wouldn't have to make the exhausting trip back down to LA. It was a battle, but it's over. Now we just need to make sure the wound doesn't get infected. There is an "area of concern" according to nurse Ratched (at the UW - not her real name) but I'm not convinced that she's not just trying to freak me out. If it does somehow become infected (fingers crossed all will just heal from here) I will bring her flowers. So there. That makes me feel better for being snarky about the snarky nurse. Ok, I'm going to go try and read some of my Jack London Collection. Never read his stuff, but his name sounds familiar. Thanks LK for the loaner!

I really am sorry for being so snarky. I go back and forth between too much pain, or just enough pain to make me crazy. Silent tears, sobbing, insomnia, dull monotonous never ending pain on the left side of mg head. (Imagine Chinese water torture with ice water or scolding drops, with oscillating internal sword fights and brick breaking. It's kinda like that.)

9 comments:

  1. Will they at least give you some Ativan? It might take the edge off. I am praying God will calm this pain and heal your brain quickly! Yes you have been through a lot of pain, and those who do not know what this feels like should just thank God they have not had to endure this. I have had severe migraines, and I know this does not compare, but I could barely hang on during those, can not imagine your pain. Sweet girl, know that we are all praying for you, and love you, and will rejoice together when you are feeling better. God please heal Jess soon!!!

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  2. Snark away sister! That's what we're here for. Wishing you will move through this phase very quickly.

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  3. I don't hear snarky-ness. I hear a smart, strong woman standing up for herself. Good for you! I can only imagine having to navigate the healthcare system on top of everything else you are dealing with. Your scar looks like it is healing beautifully. Strength and love and peace to you Jess as you continue your journey. Big Hugs! Sara

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  4. I had a lot of creaking noises in my skull after surgery, which went away after a few months, but I still get loud cracks in my skull (a year and a half later). Sometimes people near me can hear them. It's nuts... and I'm not sure it's something I'll ever get used to. So I hear ya! (Literally...) :)

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  5. Jessica, are you taking supplements through all of this? If you are they could possibly counteract the effects of pain meds. The other thing to think about is the dosage of steroids you are on. Since they prevent inflammation (a definite cause of pain) it might be worth upping your dose of that.
    Stay well, and stay strong.
    John from CT

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  6. Jessica
    Thank you as always for the update.
    Prayers continue.

    Love and Hugs...
    Rich and Andre`

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  7. God, that sucks. You do not need this attitude from your docs and nurses! You are not being unreasonably snarky, Jess. It's a healthy response to a crazy system. A little snark is a good thing sometimes. Venting is important, and we are all here for you! Can Dr. L get involved at all to facilitate the process of getting you what you need? Is there an MSW on the UW team who could help advocate for you? On a positive note, your language skills are coming back beautifully! Way to rebound!

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  8. "So Cal" PattiNovember 12, 2012 at 10:51 AM

    Glad to see that you are back (with excellent writing skills) but sorry that you are still experiencing pain and confusion. You are always in my thoughts and prayers! Love, Patti

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  9. Glad you got those sutures out. Did I tell you the story of my staples this second time around? I was scheduled to get the staples removed at my family doctor here at home. I went in and got them removed but i had my hair partially back in a clip. I had this strange feeling that they missed a staple (I'm weird like that) but didn't want to say "Are you sure you got all of those" since I obviously couldn't see them myself. I went home to take a shower and wash my scalp really well and I felt a little staple up there. Oh, my stomach just dropped. I had to go back the next morning and get the last staple removed! The worst part was that I wasn't discharged to drive yet, so I kept having to get rides to all of my therapy and doctors appts! Never again, will I be shy about any inclination I might have. I have learned over the years that I'm usually right but after brain surgery you doubt yourself a little bit! Don't want people to think you're too crazy :) Jessica

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