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Nine Months of Hell (Sinus Sx)
Nov. 7th, 2018 02:06 pmBack in 2017, it all started with what seemed like a cold. We went to Disneyland for Halloween. I came back with a full-blown cold, but then it kind of reminded me of strep throat so I hit Urgent Care the day after we got home. It was a sinus infection. Cool, take antibiotics and everything would be fine.
But it wasn't.
Over three months I went from Urgent Care, to my Primary Care Doc, and finally to an ENT specialist. I had one week of antibiotics from the Urgent Care, two weeks with my Primary Care Doc, and two sets of three-week antibiotics with steroids from the specialist. The antibiotic run ended in early January. It was a really uncomfortable time. I had two or three yeast infections, my guts were a mess - burping all the time and eating all the yogurt I could find on top of the probiotics I was taking, and I was missing dance classes. At this point it was clear that I had an antibiotic-resistant infection and the only thing we could do was to surgically take it out. I had to jump through more hoops, undergo a sleep study and all of that took time. I was grumpy and irritated with the time that it took to get all the ducks in a row just so I could set a surgical date. By the end of that I was down to only one ballroom dance a week and one Pilates session. I started to gain back more of the weight I'd lost. If I did more exercise than that my sinus infection would just get worse - and make sleeping and breathing harder. Then in April I finally got a surgical date of May 7th. We went into getting-ready mode, getting the humidifier and the sleeping wedge and everything else we would need for the recovery.
Then, on April 27th I got a call from the surgical center's insurance pre-approval person. My insurance was ending on April 30th. Apparently, my husband's boss decided to change insurance and didn't tell anyone at the company. We found out three business days beforehand, and then the rest of the company was told two days before. I lost my surgical date. I was one fucked up pissed off mess.
But at this point I was still a functional human being. Angry, sharp and really, really pissed. But I was recognizably myself.
Here's where I try to explain just how fucked up and weird shit got - and for that you're going to need some background:
I was molested in childhood, I was in fights of 5-6 vs me at least once a month from Grade School through to the start of High School. When I got to High School I eventually brought a knife to school and showed it when someone came to start wailing on me. They backed off. I took it home and never brought it again and that ended the physical abuse. I was hunted for years. I literally have kept a book a friend got me for my 19th birthday because when he gave it to me I had a hysterical breakdown because I didn't think I'd see 18, much less 19. I've lost a parent, and tried to help the other one for years. I've been disowned by the close family I loved, every one of them but my sibling because I wouldn't take a side in a family argument. I've had bacterial Spinal Meningitis and two kidney stones. I've been through a lot. And while it's been really hard, it was always doable. I have a very high pain tolerance. I don't get bored easily. I have a strategic fix-it mindset. And when I can't do anything I can let it go and just be sick.
None of this helped during the next three months, and here's what made it so much worse: I couldn't reconcile how an insignificant sinus infection had ruined my life. How I couldn't make it better, this stupid little infection. I've nearly died before and it wasn't this damn awful. I felt weak, and stupid and so, so angry that I couldn't get out from beneath it.
The husband's insurance finally got its shit together and on May 15th I found out that my surgical date would be July 5th. Cue the screaming. Turns out that the ENT was taking a whole month of vacation. Six fucking weeks of more nothing. So we prep, we plan. We get good food, we buy a new console and some great games. We hunt for book series at used bookstores because this is keeping me from going off the rails. It is costing us a lot of money we shouldn't be spending, but staying distracted was everything at this point.
At this point I'm waking up at 2pm, and going to bed at 3-4 am. I have to quit Pilates, I just can't breathe. I start having the first of the hysterical crying fits that requires the Diving Reflex to stop. This terrifies my husband. Reading isn't the escape it used to be, but I keep trying to read. I am playing Horizon Zero Dawn every evening. I watched old TV shows and played match three games and jigsaw puzzles on my iPad at the same time in a desperate attempt to fill my late-night hours and distract my brain from going insane with depression and fear, until I'm so worn out I can finally sleep. I end up with really bad shoulder pain and start taking tons of baths with Lush products to try and get it to relax, all while doing what the husband called my 'candy and Advil' diet. I was living on candy, blueberries and Dr. Pepper. My husband became more and concerned. At one point he said "I can't get my cat to eat? Now what do I do?" He'd sleep in bed at the start of the night, and then I'd sleep on the couch from 3am until 6am when he got up - and then I'd go to bed. Eventually he started sleeping downstairs, and I went to bed when I was finally exhausted enough to pass out.
That is the logical clean side of the story. The emotional side is quite different.
I wandered around in a haze of not being able to remember words like "vertical" when I could remember "horizontal". I forgot names. I walked around the house listening to the ringing silence. I would sit in a chair and desperately try not to cry. I feared I was going insane. I worried about Alzheimer's. I wondered if this trial would ever end. I had bright moments killing bandits in Zero Dawn but only when the husband was home from work. I drank caffeine and pop for the first time in over two years desperate to be more awake, and prayed the Advil would make my shoulder stop hurting.
We had towels all over the house, in case I lost my shit. When I just couldn't take anything more I would start to cry. (For reference the first time my husband saw me cry like this was when my Dad died - he brought me down to the basement because he was afraid the neighbors would hear it and call the police.) My body temperature would soar, I'd start to cry and keen. Because of the sinus infection I'd drool like a nauseous cat into the towel, and would eventually hyperventilate because there wasn't any air. Eventually the husband would call time and either bring me a cold washcloth for my face or we'd go to the bathroom and shove my face under the faucet because nothing else would stop it. And then the cooker would start building more pressure - but unfortunately these crying jags didn't release any real pressure.
After almost six weeks, the Thursday before the surgery date we started picking up all the foods I thought I'd want to eat. I got extra tea, rice from the good Indian place, and Piroshky Piroshky. A friend came up to visit just before my surgical date. The end was in sight. I warned the friend that it when she visited, it wouldn't be a picnic and I was really unpredictable. I was already getting angry when I made simple mistakes, and couldn't remember easy normal things, but I knew that it would be over in a couple of days.
After almost six weeks, the Thursday before the surgery date we started picking up all the foods I thought I'd want to eat. I got extra tea, rice from the good Indian place, and Piroshky Piroshky. A friend came up to visit just before my surgical date. The end was in sight. I warned the friend that it when she visited, it wouldn't be a picnic and I was really unpredictable. I was already getting angry when I made simple mistakes, and couldn't remember easy normal things, but I knew that it would be over in a couple of days.
Then on the 2nd of July the three of us came home after picking up some things, with only the grocery store left on our list. I picked up the mail and handed it to the husband. As we pulled into the driveway, from the back I hear "we're not going to the store - we're going inside." When he wouldn't tell me what it was I shut down. Once we got inside we discovered that our new insurance that had approved the surgery a month ago - had denied it on June 27th and sent it to us via a roundabout mailing system. I seriously started to lose it. I started flailing my hands and walking in circles in my living room. It was literally two business days to my surgery. The husband and the friend tried to distract me, point me in a direction of what we could do. Which I knew was nothing, nothing would happen in two business days with a fucking holiday in the middle. In the end I was in the ENT's office on Monday morning at 8AM. While they kept my surgical appointment until Tuesday, there was nothing they could do, as the insurance wouldn't approve of the surgery. This is also when I found out that my doc was retiring in August and his last surgical day was the 6th of August.
At this point I completely lost it and started to have hysterical fits we couldn't make stop. I nearly choked to death once on Kleenex trying to blow my nose while crying, hyperventilating and keening. I wanted to eat nothing. I wanted to do nothing. I had overused all of my coping mechanisms until they were useless. We tried new games but I wasn't able to get past the new learning curves as they made me too frustrated. I was out of books that I wanted to read - at one point I had three going and couldn't settle on one of them and abandoned all of them. I slept all day and stayed up all night. I had begun to believe that I'd never get surgery and this would be my life forever. That month was a blur of hysterical fits, and overused coping mechanisms. I lived in a bubble of lethargy, hysteria and repetitive actions to fill the hours that I was awake. I was lonely, angry, and depressed. Someone later told me they were worried that I would have committed suicide; however the slide into the dark was so fast I passed suicidal at supersonic speed and then was too apathetic for the idea to even occur to me.
Eventually the ENT's medical staff who spent days running codes for the insurance company, finally got the insurance to agree. I got my surgery on my doctor's last surgical day. On the day of the surgery I almost didn't get surgery. At the surgical center on the surgery day, even with insurance approval I was convinced that I'd be denied. Thanks to the horrific journey, the exhaustion, and my still very active terror that somehow that something was going to go wrong, I was a mess - my heart rate and blood pressure was crazy high, to the point that they feared I wasn't a good candidate for surgery. Luckily the staff realized it was stress-related and I got to spend some time doing breathing exercises and having my husband pet me to get my heart rate down to a "do-able" range. I walked into the surgical suite and was out.
Recovery was easy (except for the 48 hours I had to sleep on the wedge at a 60 degree angle). The next week, once the packing came out of my nose it was like a light went on. I was me again. I could breathe. I could think. I had energy. It was instantaneous.
I'm glad to have my life back but there are some deep scars. I no longer believe that there is ever going to be a "tribe" to help me. Almost everyone chose to distance themselves or just tell me it would all be ok and nothing else. Or in one case a person literally mumbled a platitude and ran. Even some of my close friends drifted off during this period. I didn't have the energy or the thought process to go chase them.
Luckily a few friends were there, and of course my husband of awesome.
I'll still be there to lend a hand, but I'm no longer going to expect anyone to do the same.
At this point I completely lost it and started to have hysterical fits we couldn't make stop. I nearly choked to death once on Kleenex trying to blow my nose while crying, hyperventilating and keening. I wanted to eat nothing. I wanted to do nothing. I had overused all of my coping mechanisms until they were useless. We tried new games but I wasn't able to get past the new learning curves as they made me too frustrated. I was out of books that I wanted to read - at one point I had three going and couldn't settle on one of them and abandoned all of them. I slept all day and stayed up all night. I had begun to believe that I'd never get surgery and this would be my life forever. That month was a blur of hysterical fits, and overused coping mechanisms. I lived in a bubble of lethargy, hysteria and repetitive actions to fill the hours that I was awake. I was lonely, angry, and depressed. Someone later told me they were worried that I would have committed suicide; however the slide into the dark was so fast I passed suicidal at supersonic speed and then was too apathetic for the idea to even occur to me.
Eventually the ENT's medical staff who spent days running codes for the insurance company, finally got the insurance to agree. I got my surgery on my doctor's last surgical day. On the day of the surgery I almost didn't get surgery. At the surgical center on the surgery day, even with insurance approval I was convinced that I'd be denied. Thanks to the horrific journey, the exhaustion, and my still very active terror that somehow that something was going to go wrong, I was a mess - my heart rate and blood pressure was crazy high, to the point that they feared I wasn't a good candidate for surgery. Luckily the staff realized it was stress-related and I got to spend some time doing breathing exercises and having my husband pet me to get my heart rate down to a "do-able" range. I walked into the surgical suite and was out.
Recovery was easy (except for the 48 hours I had to sleep on the wedge at a 60 degree angle). The next week, once the packing came out of my nose it was like a light went on. I was me again. I could breathe. I could think. I had energy. It was instantaneous.
I'm glad to have my life back but there are some deep scars. I no longer believe that there is ever going to be a "tribe" to help me. Almost everyone chose to distance themselves or just tell me it would all be ok and nothing else. Or in one case a person literally mumbled a platitude and ran. Even some of my close friends drifted off during this period. I didn't have the energy or the thought process to go chase them.
Luckily a few friends were there, and of course my husband of awesome.
I'll still be there to lend a hand, but I'm no longer going to expect anyone to do the same.
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