PTSD? ME?

Control

Control is NOT my thing. My husband and I both were looking for someone who wasn't controlling, because we'd seen too many unhappy marriages with one partner being obsessively controlling and manipulative. I could care less about which way the toilet paper is put on, how the toothpaste is squeezed, how you do the dishes, how you dress, what soda you drink, or how you drive. I'm just grateful you're doing it and in my life. And if a thought pops in of, "Ummm, that's not the easiest/best way..." I thank my hubby more for doing it. Just a lot of gratitude. I've been that way since my first year of college. Find the good and let go of the rest.

I also had to learn how to not let my heart or my head take too much control, but to get in sync. This took longer. It took some time, for example, when my heart would pine after a guy and my head would say, "Nope. No bueno." Or I'd just freak out and take on the personality of a plate stammering in awkwardness and leave only dead air. Other times I threw caution to the wind and let my heart go (like when I finally decided to stop waiting to love a guy before I kissed him and kissed a French Jamaican at the Eiffel Tower in Paris. Yeah, I have pictures of my FIRST kiss. Ever. Did I mention it took me a long time to let go?). I had a pretty decent balance between my heart and head. But between my body and my spirit, we've been fighting for quite some time. I suppose since my first year of college. My body let go of my vision and hearing as new lesions formed. I had nausea, dizziness, fatigue and pain every day. My body would defy me, do its own thing, and I was left trying to catch up with its new disabilities. This was different than not wanting to control another person or differentiating between my wants and needs. This was so basic and just about living and surviving. My body---oh, that fighting body---my cells were fighting themselves. C'mon guys, get it TOGETHER!

PTSD is a WHOLE other game I didn't have any experience with until now.

When some friends mentioned it, I thought, no, that's not me. Before the thought had come to me that it was PTSD, but I thought it probably was just a mini version of PTSD. I didn't experience war, physical, or sexual abuse where it is obvious that your FIGHT or FLIGHT reaction would kick into gear. The psychological effects of these horrendous situations I could sympathetically understand as I talked to, worked with, and loved many who had experienced these situations. I never thought much about PTSD itself, but thought more about their emotions during and after the miserable attacks on their bodies and psyche.

Until I experienced it and thought, "Um, no, I haven't been through anything even remotely similar. Mine is just silly."

Back Up-->
I went to a chiropractor and she wanted X-rays because I have so many health issues, especially after the surgery. My insurance for sure wouldn't cover the expenses in her office, so she sent me to the hospital. I wasn't worried about this. Since the surgery I had returned to the building attached to the hospital, had blood work drawn, and had several check up appointments. I even was in the hospital for 4 days and had no PTSD from it. Not even when that cocky doc messed up my spinal tap. I just laughed it all off. Sure I was depressed, shaky, and had some issues, but I didn't connect that at all to my waking up in the middle of surgery.

So, going to a different hospital for X-rays and one vial of blood was NO biggie.

I waited in the late afternoon for my turn with the phlebotomist. As afternoon hits, so do my pains. Once I met with her, she took LITERALLY 10 minutes to feel back and forth all over my arms and hands on both sides. Never dug a needle, but obviously couldn't feel anything. In my 19 years of medical tests and pokes, I can tell when someone doesn't know what they are doing. But I don't usually speak up loudly. She was young and I had already asked if we should have someone else try. "No, I'm just feeling for it before I poke." By the third attempt to go back to my right arm, I INSISTED that we call up someone else. I started getting nervous and shaky. ? She came back after some time of other nurses coming and going. She said I'd have to wait 20 minutes. I didn't want to wait. I wanted to run. What was WRONG with me???

So, I went down to X-ray. The guy was kind and quick. But then there was an ODD X-ray he wanted. I had to open my mouth as wide as possible. I explained how difficult this would be with my anesthesia dolorosa, but it had to be done. So, I did and the pains increased. I got a bit more shaky. I just figured I needed to finish and get home to take the rest of my anti-seizure meds before my pains got to that unbearable level. But then I had to lie down on a cold metal table for the last few X-rays. The minute my left leg touched the cold metal table as I lay flat, my body wanted to JUMP out of itself. All of a sudden the emotions and memories of waking up on the surgical table 2 months earlier came rushing back to me.

I was nauseous. I was dizzy. I wanted to cry and scream at the same time. My heart was beating too fast. (My doctors have been worried because for the first time my heart rate continues to be too high because I'm constantly in pain). I've gotten very good at keeping my emotions in check and dealing with them secretly and silently on my own. But this was trying my control. I started shaking and asked the tech how many more. He would adjust my arm, move the table to the right place (easier than moving the gigantic machine with a light above me). Each time he moved it I thought I would fall to the floor. He reassured me there were only two more left. I breathed deep and continued to tell myself to get a grip. It was ONLY X-rays. It's NOTHING. I don't have a needle shoved in through an opening into my skull. There was no heat. The light was for the X-ray not to see better through my face to direct the needle. They weren't looking specifically at my face with anesthesia on call. Two more. Once I was done I hurried to my husband breathing deeply, whispering that I almost fell apart in there because it reminded me of my surgery. He rubbed my back, we got the CD and I wanted to leave IMMEDIATELY. We still had to meet with another phlebotomist and I didn't want anyone digging in. But, I reminded myself that I HAD to get it done. I've been poked way more times than I can count. This is just one of 1,000. I told my husband I couldn't talk about my feelings or emotions or I'd cry. I had to do this first. I met with the phlebotomist, it took her less than a minute and we were out.

I cried in the car and said, "This surgery messed me up in every way. Will I ever be normal again?"

I didn't think I'd have an issue. Dealing with waking up in the surgery was the lowest on my list of things to conquer and deal with! My nightmares had stopped, I was dealing with the pain, I had quickly forgiven whoever was responsible for the situation, and was focusing on healing.

But, apparently feelings buried alive don't stay buried. It is an odd sensation to feel so intensely something that you had tried to bury. You feel like you're being buried alive. You feel like you're drowning with no life saver in sight. My body wanted to separate from the situation, but couldn't. I was being FORCED to deal with this. Again.

Talking about the surgery started to help me get a better handle on it.

DAY OF SURGERY:

I went into the hospital happy and extremely hopeful. I didn't care if I was one of those whom it only helped for a week. One week with no Trigeminal Neuralgia was a dream I could only imagine. I joked and laughed with the nurse getting me ready. She couldn't get my IV and had to call someone else over. But, no biggie. She opened up about her daughter and commented on my joy and ease. She had to go work on someone else and I was assigned my nurse who would be there when I got out of surgery. I saw the young anesthesiologist again (I'd seen him 2 weeks before). I joked that he has the best job because he is who everyone wants to see. He makes the pain disappear. He acted weird and didn't respond with a "Yeah," but I figured he is used to not interacting much with people. No biggie. I was wheeled into the surgical room and I smiled and talked to everyone. I got onto the cold metal table myself and told them I liked the cold because of my MS. They explained what they were going to do and I was great with it. I fell asleep and don't remember anything...UNTIL...

I woke up with the most intense pain I had EVER felt before. I could feel the needle in my skull, the burning in my face, and SCREAMED. Not one scream, but over and over begging them to stop. I had jerked my head. Someone said, "Stop," (I believe it was my neurosurgeon). Then he said, "____ more," I thought he said, "We aren't going to do any more," but wasn't sure. He might have said, "We need to give her more." They pulled out the extremely long needle. I started to close my eyes but didn't want to. My screams stopped, because I knew the needle was out at that point. But for some reason I still wanted to let them know that it had hurt. I still wanted to beg them to make it all stop. To make the pain stop. I could still feel pain. I know it's not logical, but I still felt like they were trying to kill me.

They moved some things, turned off something, and more people started moving around me. A nurse said, "I can help move her to the bed" (She might have used another word than bed). I thought, "Oh, I should help too." With my eyes closed, I said, "I can help too. Do you want me to help move to the bed? I can do it myself." I didn't want to inconvenience them and wanted to do my part. I started to open my eyes to see what their response was because no one said anything. It was like everyone went silent and still for a second. A few seconds later, I couldn't open my eyes easily and my body jerked like it never has before. It felt like my body was trying to fold in half. I was unable to say what I wanted but could only moan in sync with my body jerking. I was conscious but couldn't open my mouth to say anything. For some reason I couldn't understand what was happening. I just knew that they were making it worse. I needed to beg them to stop because now I had even less control of my body. It was like a nightmare where I couldn't move or talk but desperately needed to. The unbearable stabbing pains, the uncontrollable & severe body spasms, the nausea, dizziness, the memory of the huge hollow needle up inside my skull, the burning, and feeling like now my jaw was wired shut with only the ability to moan in sync with my body's grand seizing were too much. The nurse reassured me that I didn't need to do anything. They would take care of everything. But to me they then pretended like I wasn't there. They moved my body without me saying anything. They had control and I had none. My pleadings fell on deaf ears as they talked to each other over my body.

I fought over and over to get enough control to open my eyes or my mouth. I just had to TRY HARDER. It was like super glue, knives, a sledgehammer, bugs, stinging scorpions, and an ice pick being shoved down my ear were mocking me all over my face and consciousness. It was the most painful nightmare I'd ever experienced. But everyone around me moved and talked like I wasn't even there. I didn't even matter.

The bars were raised on the bed, someone wheeled me through the doors of the room, down the hall, and as they were parking the bed, I FINALLY had enough control to open my eyes. I looked up and saw the clock was 10:00 a.m.. The surgery had taken 2 hours. The nurse walked over to me and seemed surprised that I was so awake. The others circled around my bed. There were several nurses (more than the two assigned to me-one of them the first nurse who had talked to me), my neurosurgeon, the doctor on the floor (for patients recovering from surgery), and I think the anesthesiologist. I blocked out the 6th face and I think his is the one I blocked out. I kept repeating that, "It hurt! It HURT!" The neurosurgeon jumped forward and said, "What hurts?" I clarified, "No, the SURGERY-it hurt too much. It hurt so bad." I remember this look of horror on many of their faces. I thought they looked at each other, but the nurses may have looked at the surgeon and anesthesiologist. Maybe they all looked at the anesthesiologist. Either way they all looked very worried. I was very awake. I saw others being wheeled back from their surgeries completely out of it. I was jealous. The neurosurgeon touched my forehead and I could feel it fine. His shoulders slumped. He felt the other parts of my face and I couldn't feel them. He left and I was left with just one nurse. Less than a minute later one of my worst trigeminal neuralgia attacks came and it was uncontrollable. I begged to be able to just leave the hospital. She told me I'd just gotten out of surgery. I couldn't. She asked the doctor there for pain medication and administered it quickly. She told me, "We are going to give this to you. Most people it knocks them out (puts them to sleep), but it looks like nothing works on you that way. In 3-4 minutes my pain was under control and I again begged to leave the hospital. She was apprehensive but asked the doctor. He looked at me like I was crazy, but said, "No, we have to keep you here for monitoring. At least 15 minutes after those meds." So I watched the clock all alone. All I wanted to do was leave. I considered ripping out my IV and just walking out in my gown. But, I didn't know where my husband was and they wouldn't let him back there with me. The nurse asked a few times how I was and I said I was FINE. I didn't feel fine, but I knew if I said it and acted fine that I had a better chance of leaving soon. The nurse who was assigned to be the liaison between me, my husband, and the neurosurgeon, came to see how I was doing. I told her that I was fine, wanted to leave and wanted my husband back with me. I asked my main nurse if I could leave. It was 10:20 and I got the clearance to leave.

I later learned that the neurosurgeon and nurse met with my husband. They explained that V1 hadn't worked and that I woke up in surgery. The nurse said, "She may remember too much of the surgery." The kind, compassionate neurosurgeon talked about how disappointed he was that it hadn't worked like he had anticipated. (V1 is the hardest to get, but he is very capable.) For some reason he didn't get to V1. He took it upon himself to come out and talk to my husband personally. My calming husband was allowed to come back with me, they got a wheelchair, I was taken down to a lower level, and checked out. It probably took 10 minutes total, but again felt like eternity. I cried and cried because it was obvious that my worst trigeminal branch hadn't worked, the numbness was something I didn't know if I could live with for 1-3 years, and I was still getting my trigeminal and occipital neuralgia attacks but now in greater frequency, intensity, and now in additional spots on my face, neck, and ear. I tried not to think about waking up in the surgery and didn't even talk about it.

The next day I had a cough and the constant pains increased. I wrote a message to the nurse and said, "My lips won't stop burning." I was told I couldn't even take Advil until 6 weeks post-opp. I could only take aspirin. I sent another one a few days later saying the burning was worse. I was told I could take EXTRA STRENGTH aspirin. But, I had no painkillers and my cough grew worse. I couldn't get into my family doctor, went to the Urgent Care, only got one round of steroids, was told it wasn't in my lungs and I could call after 1-2 weeks and I could then get another round of steroids (despite my explanation of MS, weak immune system, and need to ALWAYS need 2-3 rounds whenever I catch something). Then the cough got worse, my fever was bad, I passed out once and felt like I would pass out several times, my husband covered me with ice packs so I could sleep or move and I held on until I met with my neurosurgeon. The whole time that passed was 2 weeks and 3 days, but it felt like eternity. I was better with my fever and ability to walk by the time I met with him, but apparently looked really bad. I had a 102.6 fever, pneumonia, sinus infection, UTI, and possibly meningitis.

Yada, yada, yada. You know the rest of the story if you've read my other posts on Facebook.

Anyway, fast forward 2 months and I was getting to a happier place. The focus from day 1 of my surgery and on was to learn how to survive with anesthesia dolorosa. I had buried my thoughts and memories of waking up in surgery. I figured I'd dealt with it. My nightmares had stopped, I was dealing with the pain, and I'd forgiven anyone responsible for me waking up on the surgical table. It wasn't like my skull was wide open for the surgery when I woke up. They just went IN through an opening in my skull. It could have been worse. (Which I know I say way too often).

So, when I freaked out silently as I was getting my X-rays, it threw me for a loop. It felt like it came out of left field. How did it not pop up before? It probably wasn't a big deal since I didn't actually fall off the table, run out like I wanted to, or break down in tears until I was with my husband. I concocted plans to deal with this new, surfacing fear with ideas of coming back to the hospital. I could visit patients---but which patients with my weak immune system and their struggles? How could I really help someone else while exposing myself more to the hospital. I had a thyroid ultrasound and probably another MRI coming up. I needed to face this head on. (pun intended)

I have an amazing counselor I've been working with since about December. She went through the list of qualifiers for PTSD in the DSM-5 and things made a bit more sense. I had been easier to scare, more jumpy, shaky since the X-rays, nightmares, fears, depression, and so much more I just brushed off as new things to conquer solely due to anesthesia dolorosa. I was just trying to deal. And now my body was letting me know that I have to actually HEAL. I had to face everything before, during, and after the surgery. My counselor reminded me that this is a special circumstance where I can't attack my issues as I usually do-full force. Tell me what to do and I'll do it 100% NOW.

So, I'm taking it slow. I've identified triggers and am opening up about the specifics of the surgery. I am so grateful that I had help from friends and family in December, January, and February. I had no idea just how vital their compassion and help would be in my survival. I'd never had more help in my entire life. And I had no idea that I would go through some of the worst horrors I never could have even imagined the past 3 years of our financial, physical, and emotional challenges.

But, I AM learning to HEAL instead of just DEAL.