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Raising Awareness About Life

Recovery Road

Recovery Road

September 13, 2016 ribbonrx Comments 0 Comment

Recovery is a tricky adventure. You can take ten cases of the same surgery and no single recovery is ever the same. There are certainly some trends, but never the exact same set of circumstances. I’ve had five surgeries total now, but the road to recovery has been different for all of them.

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Take my pelvic surgeries for my endometriosis. I’ve had three of them, and all three had different recoveries. The first one resulted in a UTI (which I’m still bitter about) and slight surgical site infection. The second one was a painful recovery (because it was my excision surgery), but otherwise flawless. The third one had a slight surgical site infection, but my umbilical incision ended up being extremely painful for awhile because the stitches were super tight.

But this is my first (and hopefully only) brain surgery. And this is a recovery unlike anything I’ve experienced before, with an entirely different off-ramp and exit strategy in comparison to other surgeries I’ve had.

I feel like I’m made of glass. I have so many restrictions in place of what I can and can’t do. Some of them are obvious (driving while on pain medication, even though for a chronic pain patient  like myself, the meds don’t affect me the same way they do an opioid-naive patient.) But my head is still off enough that I wouldn’t trust myself to drive anyway.

So what can I not do?

  • Do not drink unless thirsty (mouth dryness is not thirst). This is especially tricky because my mouth is dry all the time because I can’t breathe through my nose!
  • No bending (like to tie shoes or pick up objects) for 6-8 weeks.
  • No bearing down for 6-8 weeks.
  • No drinking from straws for 6-8 weeks.
  • No blowing your nose for 6-8 weeks.
  • No sneezing or coughing for 6-8 weeks.
  • No lifting or pushing heavy objects greater than 10 pounds.
  • No vigorous activity.
  • No driving for four weeks.
  • No flying for 10 days.

These are mostly all in place to allow my skull the chance to heal so I don’t develop a CSF leak. So I can’t do anything that would increase intracranial pressure. But some of the restrictions might be lifted early after my follow-up appointment with Dr. Sindwani at the end of next week if everything looks good and I don’t have a leak.

This has definitely been a weird recovery. The most bizarre part is having absolutely zero sense of taste or smell. It makes it challenging to eat and results in no appetite whatsoever. (Because when you think about it, when you crave something it’s due to the taste, and if you can’t taste it…no appetite.) I’ve only been eating when I feel I have to, which is not often, and even then it’s only something like a pudding cup or Jello or a bowl of soup. I just can’t bring myself to eat anything else; it feels like such a waste. I always tend to lose a bit of weight in the post-op recovery phase, but I’ll have to be careful not to let too much weight fall off this time, especially since I’m not sure how long this alteration to my senses is going to hang around for. But the good thing is that today I was able to taste a little bit of my pudding and was able to barely smell gasoline when I went out to the garage! I had David make me a BLT (minus the L, but who cares) and caprese for dinner since we have a tomato surplus in the garden. I was able to taste the first tomato…aaaaand then it was gone. Couldn’t taste anything after that. Boo. But I could imagine it, and it was delicious.

Sleep has been a tremendous challenge. I need to sleep slightly elevated to help with the secretions and drainage. My first night home (which remember was the first time I had slept since going into the hospital since I didn’t sleep at all in the hospital, unless 4 hours of drug-induced unconsciousness counts) I was only able to sleep for a few hours. And even only that was after drugging myself to the gills with Benadryl, melatonin, and my usual sleep meds. And since I tried to sleep slightly elevated, but on my side, I woke up with a horrible cramp in my neck that hurts all the time now and precludes me from trying to sleep on my side again. So I have to try to sleep on my back, elevated by several pillows, but I can’t sleep well on my back, even when I can breathe normally through my nose instead of through my mouth. I hate mouth-breathing. My second night home, it took me 4 hours to finally fall asleep, and even then I was only able to sleep for two hours at a time. But early this morning, I woke up and realized that I could comfortably breathe through both of my nostrils, so I immediately lowered my pillow and slept comfortably on my side for awhile. However, once I got up, I became more congested again as gravity slowly made all the gunk move south. But maybe nights will start getting easier now.

At least the two things consistent with all of my surgical recoveries are the presence of my healing hubby and my focused felines. David has been doing his best to wait on me hand and foot and to make foods that I will eat, despite the issues with my taste and smell. The cats were a little skeptical at first when I got home (see how leery Aurora seems in the picture below). But this time around, Zoe has taken it as a challenge to be my personal kitty nurse. The other night when I couldn’t sleep, she sat on my lap on the bed, followed me to the bathroom whenever I had to go, followed me to the kitchen whenever I thought I should eat, and just wouldn’t let me out of her sight. Sweet thing.

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I need to keep reminding myself that this recovery is going to take a long time. After all, there’s a reason it’s still six more weeks until I go back to work. And this wasn’t a benign surgery by any means, especially with the aneurysm at play. I just hope that my senses return to normal soon. I will be so sad if I can’t smell my fall candles! ?

? ribbonrx

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Gray for the brain, Yellow for endo
Adenomyosis, brain surgery, Brain tumor, Cats, Chronic illness, chronic pain, Endometriosis, invisible illness, kitties, meow, migraines, Painsomnia, surgery

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0 thoughts on “Recovery Road”

  1. Sharon says:
    September 13, 2016 at 9:57 pm

    I appreciate this information ! Sending Positive vibes your way . This will be the road I will take someday and reading your experience is helpful ?

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  2. tlohuis says:
    September 13, 2016 at 10:16 pm

    Sounds like you’ve been thru a lot. I wish you a speedy recovery. 🙂

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  3. Sickly Stardust says:
    September 21, 2016 at 11:02 am

    This recovery sounds as difficult as any recovery could be. The blowing your nose thing would bother me far more than anything else because I have so many sinus issues if I couldn’t blow my nose I’d simply explode. Through all your suffering I am so glad that you have such a kind husband to love you through this as well as all your kittens. And that kitty’s face is too adorable!

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  4. Pingback: Nocturnal Musings #15: The Meaning of Strength? – ribbonrx

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