Most of you reading this are reading from Facebook. You’ve followed by haphazard status updates, my whining, my complaining, and my worries. And many of you have e-mailed, texted to offer support but trying not to pry too much. For you all, I thank you.
The best way to do this is in pieces so here is part 1. Part 1 begins the scariest part of my life.
Part of blogging all the details I’ve blogged is that you guys have come to expect a level of detail that should probably be kept to myself but at this point in my life…I feel I owe it to you all for the support and love and comfort. And nothing worse than getting second hand knowledge from 2 or 3 people who may have gotten the story at some time.
There are things I believe in. While I believe in God, I have religion (though I could practice more in general), other than that I believe in concrete. I believe in things that can be proven. I believe in things that I can prove. So for this first part I ask you to keep your eyes and minds open because I feel like a nutter even admitting this.
Years ago a friend (who shall remain nameless) had a blood transfusion. She called me to tell me the nurse told her that if she felt an ‘impending sense of doom’ to let her know. She, her husband and I have joked about this over the years. Earlier this year when I posted a picture on Facebook as I received my first blood transfusion ever, her husband commented, asking If I felt an impending sense of doom. Since I’d been given some Benadryl at the same time, I slept through it and felt nothing.
Last Friday my best friend Kathleen came to visit and her sole intention was to clean my place. Not that I live like a pig or some damn hoarder but I have things and I like my place spotless and tidy. She knows I’ve been largely unable to do that over the last months. Instead she spent her holiday weekend with me, cleaning, organinzing. Making me help organize through old papers, magazines etc.
Saturday morning when I awoke I had a new pain. Not in my right hip – the one causing so many issues. The other hip. The left hip which also needs to be replaced. But the pain was new. Snapping, popping, creaking. And while many people end up with ‘snapping hip’ syndrome which is more annoying than painful, because the state of my hip joint this was not painful. In fact this hurt worse than anything I’d ever felt. My pain meds didn’t seem to be working (I later discovered my Wound Surgeon prescribed me wrong…with a way lower dose. FUCK).
I laid on the couch all weekend, dying in pain. Overcome by the fact I could not move my left leg a millimeter without shouting in pain. There is nothing I dislike more than overdramatic pain. I try to keep it to myself. Suck in a deep breath, maybe say ‘whooo’ or something but this was new. The pain began at the middle of my buttocks and wrapped around to my groin. No comfortable spot.
Monday Kathleen had to leave and my nurse Barbara was coming to change my PICC line and get bloodwork. I had had such a good weekend. Aside from all the cleaning, Kathleen had cooked a few great meals, spoiled me. And made my life feel a little less chaotic. For all intents and purposes, I was happy as I could be emotionally.
While Nurse Barbara and Kathleen and I chatted…my nurse is wise. We need more people like her on earth. She took care of me, we all chatted but I felt this just off feeling. Way too hard to explain. I’d love to explain it but there are no words.
Soon after it began the Nurse left, the Kathleen left and I dozed for a little bit. I got an email from a friend on Twitter who lives in my building but I’ve never met. He said he was home with his baby girl today doing laundry and would he be ok coming to visit me for a bit? I said sure but I was in pajamas and I wasn’t going to change.
He and I had never met before but he seemed like good people and I said sure, he coul come up with his sweet little baby. I could use a baby to cheer me up (and omg she was gorgeous and smiley)
But the longer he sat there, the weird feeling got worse. He stayed for a half hour, we chatted, and before he left he made an effort to shake my hand.
I was alone for another few minutes and the slow feeling that had begun slammed into me like a brick wall. I was going to die.
I wasn’t suicidal in the least, it was this overwhelming feeling that death was upon me. There was this terrifying feeling but at the same time this odd calm I’d never felt before. The only way I could express it was ‘an impending sense of doom’. So, after all this time, I finally knew what it meant. And more so, like there was nothing I could do about it.
Took to the internet and on a whim googled an impending sense of doom and did scanned articles until I found something that made sense. Anaphylactic Shock. It occurred to me this started shortly after my AM IV. The only other thing I could think was the suggestion it was anxiety. But I didn’t feel anxious per se. I remembered my Infectious Disease doctor on her personal cell, left her a message, despite it being a holiday. I’ve never done that, not ever but I was terrified. She called back almost immediately. We discussed things. She called the office and got my lab results and told me I was a little dehydrated but other than that things were fine. And that were I having a true anaphalactic shock I would not have been able to call her. She asked how I felt, was I anxious or upset by anything? No. We chatted, I apologized profusely for calling her on a holiday.
She did calm me some and told me she felt I was having the ‘mother of all anxiety attacks’ and that its not surprising with what I’ve been through. But still, terror coursed through me. After apologizing again she shared with me a story about a hospital employee, someone everyone loved and got along with and he suddenly a couple months ago committed suicide. She said amongst her colleagues who knew him, all they keep asking is ‘why didn’t he call us? Why didn’t he reach out???’ The doctor told me when something is off physically or mentally it’s a signal we need to quickly check.
I cried and told her there was so much going on with the new PICC line in my chest, the massive drainage, everything. I’m scared. She reiterated it was probably an anxiety attach and not an allergic reaction (I have a looooong history of being allergic to many major classes of antibiotics so I thought there was a chance it was that). She insisted I call her back if anything changed and said I held a special place in her heart because I’d been dealt a rough hand especially at my age.
After we hung up, I laid on the couch. And I breathed. Slow, long breaths.
And then it happened again and I couldn’t stop crying. It felt like my body was slowing down and that if I closed my eyes I would die. On one hand I’d rationalize I’d had a decentish life. And on the other hand I knew that my death would kill my parents, destroy my niece.
Also unlike me, I called my dad – who was going to be over in the next 2 or 3 hours. I called in such a hyper upset stage babbling about dying and I didn’t want to die that we hung up abruptly and I laid on the couch crying, staring at the ceiling until my dad arrived.
He grabbed my hand, listened to me as I sounded like a lunatic trying to explain how I was overcome with the thought I was going to die and at the same time some weird calm.
The rest of the night dad stayed with. He went to get us dinner and I was scared while he was gone. At bedtime he offered to spend the night on the floor at the foot of my bed, but I told him no. It just felt like I needed a witness. If I started to die, someone had to witness my death. All night before bed I’d causally mention things like ‘oh if I die, I want to be buried in this.’ And ‘oh if I die I just wrote a list of people you need to make sure know. Their phone numbers are all in my notepad. I even had myself convinced my Twitter friend insisted on shaking my hand to remove my soul a la ‘Dead Like Me’. Yea.
Not like me. At. All. I’m so realistic and level headed this was nothing like I’d ever experienced and it was the most terrifying thing ever.
It got slowly better, even though I wrote my will out hastily on Tuesday when I wasn’t staring at the wall. I had no interest in the phone, texting, facebook, my online games, reading, eating, nothing. I’d have a few moments of solace then suddenly ‘oh shit, I need to make sure my dad knows who the beneficiaries on my financial accounts are.’
OK this was long, but it was the beginning of the last week. Part 2…the Wound Surgeon. Coming tomorrow.