All of the thinking, planning, and discussing came down to the night before surgery. I knew that 24 hours from then I would have had my surgery and would be home recovering. I ate a good dinner, scrubbed with surgical soap that makes your skin feel like the Mojave, and talked through my nerves with Matt. We held hands, hugged a lot, and smiled knowing that soon it would all be over. He can read me like a transparency and knew that I was scared, nervous, but excited and ready. We both laughed at how my instructions said to ‘get a good night’s sleep’ – we were so wired even though we knew we had to be up at 4:00 a.m. to get to the hospital at my check in time. We sat up and laughed, cried, and talked about he assured me that everything was going to be just fine, and if it wasn’t he was here for me, no matter what. Little did we know how far his compassion and love for me could stretch.
We both woke up bright eyed and bushy tailed at 4:00 in the morning. I had to scrub with the surgical soap again, got dressed in my new pajamas we had bought just for the occasion, I hugged my cats and told them to behave themselves over the next few days and to be good for daddy and grandma, as my mom was planning to stay the full week after surgery so Matt could go back to work. We hopped in the car and met my parents at the hospital. We had to walk what seemed like miles to find the right registration desk and finally were seated in the waiting room.
The desk assistant let us know things were running a bit behind so we waited what seemed like forever and finally my name was called. Matt and my parents waited while I got my IV, peed in a cup, had vampires suck some blood, and talk with a mirage of nurses, docs, anesthesiologists, Dr. Paparella’s fellows who would be overseeing my surgery, and finally my family was shuffled back in. Matt’s mom had taken the day off and came to the hospital as well. We all sat very quietly waiting for my turn under the knife, I kept telling myself I can do this, I have to do this, too many people need me to be me, I have to do this. When the tech came in and said it was time to go of course I no longer was the master of my own bladder and had to pee, so I kissed my mom, dad, and Matt’s mom. I saw the tears in everyone’s eyes and felt them swelling in my own. Matt helped me to the bathroom with my IV bag and we had one last private moment where I told him I was scared and asked him to reassure me that I would be alright. He did, we kissed, opened the door, and I got back on my hospital bed. The tech injected Verset into my IV, which is a lovely drug when you need it and the last thing I remember is Matt holding my hand until the last moment when I entered the OR…
I woke up with an oxygen mask on and heard someone telling me it was time to wake up. I obeyed and opened my eyes. I wasn’t in pain, I wasn’t scared, I was sweating because they have these new hospital gowns that have a hole that a tube can be attached to and they can blow cold or hot air into the gown. Apparently I had the after anesthesia shakes so I tried to get out I was sweating and the nurse turned the air off and pulled my oxygen mask off. My throat hurt, it was dry, cracked when I tried to talk and I felt pressure on my forehead from the tight pressure bandage they have put on that wrapped from my left ear all the way around my head. I squeaked I was thirsty and after they gave me an ice chip I asked if I could see my family. Moments later, the first person I saw was my dad. I remember trying to say, “Daddy” when I first saw him, but I know my eyes swelled with tears again at the sight of him. I don’t know why in that moment seeing him felt so good, but it was the biggest comfort I could have had at that moment. I was going to be alright, otherwise my dad wouldn’t be smiling and have tears in his eyes. Then Matt, then my mom, then Matt’s mom came into my vision and I felt that calm again, that peace. My dad told me that Dr. Paparella said the signs of Meniere’s were extensive and that surgery was a complete success. This is all I remember clearly after waking up, seeing my dad, my family next and hearing it was a success. I have been told I said some funny things, kept saying hello to everyone who walked by, and saying woohoo every few seconds. ha ha
Shortly after I was pretty lucid, I was sat up in a recliner and eventually was able to get dressed and get loaded into a wheelchair and sent home. I felt amazing, I felt so good it made me nervous. What I didn’t know is that the saying “calm before the storm” would be all too clear for me soon enough. The three days after surgery were a breeze, I was getting up to the bathroom by myself, was only take Tylenol for pain and was having virtually no distress.
Thursday changed everything… Matt came home from work and I wanted to walk down and get the mail with him as I had been doing that the days following surgery. We did that, I got back upstairs and got up to use the bathroom and felt instantly dizzy and like I was going to faint. The feeling only got worse so I got back to my chair as quickly as I could. Matt and my mom were on me like flies as I was complaining about feeling really ill. I was hot, sweaty, violently shaking and was feeling like I was going to lose consciousness. We called my ear specialist and found out Dr. Paparella had taken off to Brazil to teach the day after my surgery and wouldn’t be back until the following Wednesday. The doc we spoke with said go to the ER if things do not improve quickly…
They didn’t. Matt had to carry me to the car, my mom sat next to me and kept me awake as I kept wanting to give in and let the blackness that kept creeping into my vision take over. I was taken immediately into a private ER room, had an IV put in, needed to pee but couldn’t get up to walk so I had to be given a bed pan for the first time, and hopefully last in my lifetime. They injected me with Ativan, another drug I don’t remember, and some Benadryl. They admitted me into the hospital. I was unable to walk to the bathroom that first night so I had to use a bedside toilet. The reason I am telling you these things is because I want people to understand what this disease does to people. I want you to understand what Meniere’s takes away from it’s victims. Privacy, modestly, dignity, confidence, control.
Matt stayed with me in the hospital that night since my dad came to town and stayed at my apartment with my mom. I think he held my hand the whole night. I remember little from the first night as the combo of drugs made me drowsy. The next morning I met with my GP and she seemed to be in tears when she saw how I looked. She told me I was going to be there for a while as they figured out what was going on with me. My parents came back early the next morning so Matt could go home and get some rest. I felt guilt, embarrassment, anger, confusion, that my family had to go through this, that I was stuck here. 24 years old and admitted to the hospital, pumped full of drugs, needing to call a nurse to help me to the bathroom. I met my day nurse, Pam who I fell in love with. She made the ordeal seem a little less traumatic, her hands were soft and warm and she reassured me and my family I was in good hands.
The second full day I was in the hospital was when it was determined that this was a rare, but not unheard of, complication after surgery. We had a pretty good drug schedule going in the hospital and as long as I sat completely still I was feeling alright. The moment I moved my head, even to scoot up in my bed, it was uncomfortable and I felt myself slipping away from consciousness. I was able to walk the three feet to the toilet, but needed help. We stopped calling the nurse every time and my family helped. Just a disclaimer, I have never been overly modest, especially with my mom and dad. However, there is a difference between being comfortable with one’s body and having to ask my dad to hold my hand as I use the toilet. Having to ask him to help pull my underwear up feels like the definition of the 8th circle of hell. I am his little girl, he changed my diapers, but I am 24 now, his heart was broken seeing me in that condition.
I appreciated that my family hid a lot of what they were feeling, they remained positive while I was screaming inside, and sometimes the outside too. I would start sobbing out of nowhere. Matt would tell me our cats missed me and I would cry. I was angry, angry I couldn’t go pee by myself, angry that I had to drag that damn IV pole to the bathroom with me, angry I had a stupid heart monitor stuck to my chest – another thing I had to carry around every time I had to pee. We finally got smart and brought my pajamas with pockets to put the heart monitor in when I had to get up. My excitement over my new special pajamas was gone, I felt excitement for nothing except for blueberry muffins that the hospital had. I don’t know what it was about those damn muffins, but I feel without them I would have crazy. My mom and I cried openly, my dad and Matt cried and agonized on the inside, I could see it in their eyes – my suffering became theirs, and theirs became mine. All pain is the same. We were connected through my pain, our synapses were firing all at once, we were tired, angry, exhausted, and suffering. I would save my worst anger for Matt, we would be alone in my hotel room and I would spout angry diatribes, scream, cry, snot dripping from my face, I didn’t care, I wanted to give up, I prayed for death, or at least to wake up deaf. Being deaf means never feeling these things again. I remember saying I wished they would have killed my inner ear completely. I am sorry to Matt for that, but he let me spew, scream, kick my feet, he reminded me that someday this would be worth it. He never scolded me for having those feelings.
Matt’s mom (who is ironically a pediatric post-op recovery nurse) came and stayed with me in the hospital one night so my parents could go sleep at home and Matt could get some rest. His mom and I are extremely close. I love her like a second mother, but never thought I would need her to help me to the bathroom. In the morning, she gave me a little sponge bath and rubbed lotion on me. I remember the tears falling from my eyes. Here is this woman who six years ago didn’t know I existed and fast forward, she is here rubbing lotion on my feet, scrubbing my arm pits and helping me go pee. The world is an insane place.
Each day I would do just a little better. First I would be able to get myself in a sitting position by myself, then I would only need one hand to get to the toilet, then I would be able to shuffle back to bed by myself. It was slow, and while everyone kept telling me they could see this wonderful progress, it would irritate me. How can you say I am improving? I think that is typical, I was overwhelmed with anger and couldn’t see those small steps were improvements.
By Sunday my parents and Matt were taking me home, I think they were ready for me to be home. I was ready to be home, but in the same breathe I was terrified to go home. The hospital was safe for me. If my parents or Matt weren’t in the room for 10 minutes, a nurse could be. If I needed meds, they would be attached to an IV portal, which fed directly to a vein in my right arm, home did not afford that commodity. The toilet was three feet from my bed. It was six shuffles away from the left side of my bed. It is much farther from me at home. At the hospital it is quiet, there is no loud AC running, there is no dishwasher, there is no sink, there are no dishes being clattered, footsteps are silent, my food is brought to me and is on a tray at the perfect level where looking at it doesn’t make me dizzy, there is little stimuli, which is what my GP said I needed the most. As badly as I wanted to see, hug, kiss, love on my cats, they are into everything, jumping on me, trying to chew on my straw in my water glass, trying to get my chapstick on the floor. Thinking of all of these things made me nervous to go home. What if I had another bad attack? What if I needed someone and they weren’t able to be there right away? I was taken by complete irrational fear.
I did some work with a physical therapist who was wonderful and taught me a lot about the relationship between the body, eyes, and ears and she reassured me I would be good at home. My doc would have let me stay longer but my parents and Matt were ready for me to be home. Again, I was angry, bitter, nervous, but excited to get home. I have never felt more emotions at once in my life than in the last few weeks. I was discharged on Sunday July 15th. I cried when I had to say goodbye to my day nurse Pam. She had tears in her eyes when she hugged me and told me to take care of myself and that she hoped she wouldn’t have to see me in there again.
My first night at home was difficult. My second was a little less difficult and so on as it continues. My symptoms are still there, but much, much less. It is an ebb and flow. Stress makes things exponentially worse. So when I found out I got kicked out my class two days ago because of my attendance and hospital stay it set me back a bit. Matt went back to work yesterday, but takes a two hour lunch break, so I am only alone for about 5 hours with a two hour break during the day. Being alone is scary. I know that Matt spends more time checking the clock at work and worrying about me and I know he could be here in 5 minutes if something happened where I needed him.
I walk with a cane for some added balance. I am able to boil eggs, I made myself a bagel, I can go to the bathroom pretty much by myself, I can stand in the shower, but still need a lot of help. I have been able to feed and water the cats, which fills my heart with so much joy. My fuse is short, as is everyone’s. I am ready to be better, normal, happy, able to do a jumping jack, roll on the floor with the cats. I at least want to feel like I did before surgery, even though that was crappy – at least I could function fully some of the time. I am working on my anger, I let myself cry when it feels right, and try to make myself laugh as often as possible. I, or Matt has to remind me to smile sometimes. I am thinking about going to the grocery store tonight with Matt, I have a doctors appointment tomorrow. I am looking forward to getting out of the house, but am scared.
I am trying to trudge along. Thank you to everyone who has sent flowers, cards, well wishes, and prayers. For those of you have followed my blog and read my dads amazing updates, thank you too. To my mom, being able to take so much time to be with me is more appreciated than you will ever know. For all of the times you helped me to the bathroom, my first bath at home, all of the food, the waiting on me hand and foot, changing my dressing, helping me brush my hair, letting me cry, holding my hand, your patience, your love, I can’t say thank you enough. To dad, I know you were just opening your new clinic when all of this happened and the fact that you were able to take so much time to be with me, all of the grocery/pharmacy store runs, being the first person I saw when I woke up from surgery, your undying positive attitude, bringing me the bedside potty from work for me to feel a little safer when I came home from my hospital stay, helping your 24 year daughter to the bathroom and never making me feel weird for it, making me smile when few could, I love you so much. To Matt’s mom and family, the support, prayers, staying with me in the hospital, the compassion, the sponge bath and lotion (felt like a spa treatment), being there in the hospital the day of surgery, and raising a son who is willing, at age 26 to take on one hell of a girlfriend.
To Matt, for taking what seems like the whole summer off so far to take care of me, take me to appointments, spend yourself practically broke to make sure I have enough, your positive attitude, your smile that reminds me that this is worth it, your strong hands that carried me to the car to get me to the hospital, the hand that held mine during my hospital stay, the hand that held mine to get to the bathroom, the constant support and reassurances, helping me with my first bath and the ones after the first, being here at my beckon call when I need you, listening to me cry, scream, begging for you to end this – I can’t imagine what all of this is like for you. I love you more than you will ever know. I hope in a few months when we are riding our new bikes together we can look back at this and laugh. But I know that whatever we face in the next couple of weeks, we will face it together.