The other day on Twitter, Migraine Royalty wrote a beautiful piece that she tagged me on (I think she's taken me under her wing lately). It was a beautifully lyrical story about old buildings and their "bones." How even abandoned places in these buildings still had value, just like the old bones in our body did. She's a beautiful writer and I love her work, check it out here.
When I saw the picture with the name of the post my mind first read The Allure of Lost Words and that's where I come in. I've been losing words since September of last year when I learned quite possibly my words didn't matter at all. Most of you know that was when I had shoulder surgery, quite a few of you know that the surgery went well, some of you know that I nearly died after the surgery. I never wrote about the experience because when I finally got home from the hospital my whole life had changed. I used to hand out advice like I knew what I was doing (40 some years of history gives you plenty of experience) I had all the answers and the crazy idea I could help. Well, here let me tell you what happened and then I can explain.
Have you ever had a really bad feeling about a surgery? Usually I don't either, but for some reason my head was screaming at me not to do this surgery. My husband and my doctor were good and kept saying it's ok in fact my surgeon went so far as to say "I'm so calm you probably think I'm on drugs" the last appointment before my surgery (well, I hadn't but after he said that, yeah...hello, not comforting). I told my husband I wanted to postpone the surgery and he said you won't want to have it a month from now either. I realize this was the first part where I lost my words.
I got to admitting and everything was good, they started to roll me into the OR and I stopped them and asked where my steroids were, really quick they grabbed them and I watched them inject my first dose. See, this is where I'm different than most I have Secondary Adrenal Insufficiency brought on by multiple cortisone injections (from this doctor). Patients with AI need to have steroids before and after surgery because it's one of the most stressful things AI'ers go through and we don't make cortisol one of the stress hormones. To make it easy, I don't have enough steroids for fight or flight.
They rolled me back into the OR and I could see that the anesthesiologist had two vials of steroids. One for before 100mg and then one for after 100mg (this number is worth a lot of contention, there is no set number that is perfect for everyone and thought about the second dose changes drastically, can you see where I'm going with this). They put me under well, mostly under until he gave me a block in my neck and I scared both of us by waking up. Not the best time to come too when you have a needle in your neck. Then he put me out, to say I was extremely stressed would be a huge understatement.
Like all surgeries the next thing I knew I was waking in the recovery room. Like usual my first question for the nurse was "did I have my steroids?" When the answer was no, I knew I was in trouble and I knew that I was in crisis already. They called my surgeons PA back and he said you don't need steroids to which I very quickly put him straight then I got to hear him say "you couldn't possible have metabolized those steroids that quickly" at that point I didn't much care who metabolized what I even mentioned another doctor in the practice had given me steroids right after my surgery to no avail. I was sent to my room without steroids for the next 8 hours.
By this time if I hadn't been in crisis before I was by the time I got there to say my level of stress was high would be a slight understatement. I was argumentative with the nurses, mean and just plain nasty. These are all symptoms of crisis and no matter how much I knew what they were I couldn't stop them. I know to never be nasty to your nurse but by the time I was done my nurse was furious with me and rightly so but it was going to get way worse before it got better.
Why didn't I get my steroids? Two reasons equal the perfect storm. My endocrinologist was on vacation which was ok, I scheduled an appointment with his associate thinking that he would obviously check against my records. I went for the appointment and I had to fight him to spend the night (IV steroids need to be given in case you have a reaction to pain meds or vomiting, which I did). I was told I didn't need to spend the night (at that point I had stayed overnight every surgery I had except for a very small knee surgery and I begged for that one off). I also told him what my normal endo would prescribe steroid wise. At that point I was told that he was the doctor and that he made the rules, I still pressed the issue and he quickly there after shuffled me out of the office. It never occurred to me a doctor wouldn't listen to their patient or at least look at their records for guidance.
So, you may ask why such a big deal? When I was diagnosed after a 4th cortisone injection in my shoulder my cortisol level should have been about 30mg late at night due to the fact I was going to be admitted to the hospital. My cortisol level was 0. It's the lowest level that my endocrinologist has ever seen. I was in shock when I got to the ER, I was lucky my ER doc was a genius because if I had gone home I probably would have died. They figure I was insufficient for about 4 years before I was diagnosed. (So those of you on steroids asthmatics, arthritics, psoriatics please be careful with steroids no one had ever mentioned adrenal insufficiency to me before I was diagnosed with it.) As you can imagine my surgeon was not thrilled with the situation and every time I ever had an injection after I needed a note from my endocrinologist like I was a 5 year old. I didn't appreciate it and it eventually ruined the relationship between us. Most doctors don't have a lot of time to be writing notes for things like this, especially after he had taught me to stress dose accordingly (like any other adrenal insufficiency patient). He also asked me to get my paperwork from the hospital and have my surgeon call him which my surgeon never did.
So now if you are keeping up, I have an endocrinologist that's blazing new trails with my adrenals and a doctor who never gives cortisone without a note. I slept for a bit and when I woke up I was alone in my room and in shock, My head hurt, my chest hurt and my stomach hurt. I called the nurse scared to death. I was crying, I knew I was in big trouble and I must have been right because they came in to take my blood pressure and the nurse came in and gave me steroids. At that point I needed to fight for a pain med because I was allergic to the pain med they had given me (I was asked what type of pain med I wanted right before I slipped under for surgery by the PA). So by this point I'm so angry and belligerent I finally just tell them I'm going home (I have never threatened to leave a hospital in the middle of care, ever), I'm done I'm not going to lay in a hospital bed and die because no one will listen to me. I'm shaking, in shock, vomiting not to mention I've just had surgery. I'm fighting for steroids, and pain meds and a raging lunatic by this point and leaving the hospital seemed like a better idea than staying you have to know I was in the scariest place I have ever been. Now remember how I said they gave me steroids already and I'm still bouncing off the walls? Usually a steroid injection will work immediately, it took an hour for the steroids to hit my body. I'm still leaning over a bucket knowing that I can't go home because they need a line open to give me the rest of my steroids for the day, 100mg still to go. All of the sudden I get a message from my surgeon "Melissa, Dr. - wishes you would stay." And just like always no matter if the guy doesn't listen to me, or puts my life in danger, or never puts my health needs in front of his worry of my suing him, I bend. 20 minutes later I'm meek, apologizing to everyone that walks into my path, of course I'm horrified at my behavior and thankfully the nurses know and are wonderful to me anyway not that I deserved it.
I stayed awake that night, besides the extreme dose of steroids I wanted to make sure that I got the rest of the doses that I needed. The PA checks in with me the next morning, I can't even stand to look at him and he drops this gem on my bedside "we don't ever trust the patient over the doctor." I didn't have the energy to argue and ask what happens when the doctor is wrong and the patient is right? I didn't make it to 8 hours, if I was in shock at 5 hours would I have been dead by 8?
I never even discussed this with my surgeon, I got ripped from my endocrinologist and told that I could feel free to leave because there were 5000 patients behind me. He was angry because he thought I didn't want him to take a vacation. Seriously, go on vacation but can you make sure your partner does your job not his. His reply, I can't make him practice like I do. My PCP who refers to him had a lot to say about that.
So, you're wondering Lost Words? " "I'm scared." "I'm going to die." "I can't believe this is happening." These are the words I was thinking when I was laying in bed dying because I was sure that's what I was doing. I laid there and no one listened, everyone else thought they knew better than the one it was happening to. When I left the next morning I got into my car and said to my husband it's the first time that I think I'm safer leaving the hospital than I was in it.
I thought I was done but the next day I woke up angry and broken in a way that I didn't know how to handle. I never wrote about it because I didn't know how to, words didn't give it justice, I couldn't find the right words to make anyone understand how horrible it was. So I stuffed my feelings and they festered, I lost my ability to help people I wasn't even sure if I had anything to give people anymore. I couldn't figure out how to fix myself much less anyone else. I retreated. And the one thing I had was writing and it was gone. If I couldn't be heard laying in a hospital bed dying, what did a bunch of words on a blog mean. Usually a blog is a place for bloggers to dump about what is important to them. I have got to be the only blogger with 9000 ideas and an inability to get them on the paper. I lost my ability to use words because what happened to me was so big there weren't words big enough to explain it.
What happens when patients aren't listened too? What happens when doctors think they know everything and aren't willing to listen to their patients? What patient do you know that would intentionally hurt themselves by saying something they didn't know to be true? What would have happened if I had died? Would they have told my husband "I'm sorry we don't listen to patients?" We keep talking about patient engagement and listening to the patient but no where did I see that evident that day. The system is broken and unfortunately the patient is still the one paying, something needs to change because I'm afraid we may start paying with our lives if we don't.
Do you know what other words I never heard? "I'm sorry." How far those two lost words would have gone.
I'm going to be blogging about some things that may be difficult to read in the near future please be aware I need to get these things out in order for me to move on and be able to write the good stuff again. I'm hoping to make you aware of the mistakes that I made so you can make sure not to make them yourself. I'm starting to feel more sturdy but I'm not the same person that you might have known last year, I hope you'll enjoy the "new me" and my writing. Thanks!