Insomnia Driven Musings

If you ask someone where they'd like to be a year from now, most have all kinds of grand answers. They want to graduate, or get a promotion, or obtain the ever elusive bikini body, or be married, or have a child, or travel some place glorious. They see themselves reaching goals. Moving forward. Building a life. I wasn't any different. I wanted two or three jiu jitsu belts, to be a successful nutritionist, find a nice boy to date, move out. And I had no reason to believe I wouldn't obtain these things because like most people, I assumed I had all the time and opportunities I needed. This month marks a full year since this medical journey began. And what I've learned this past year is that if I'd known or had any inkling of what it would be like, I'd have done a great many things differently. I'd have been pushier that first time I went to the ER and not let them send me home with a few pills so that maybe I could have emerged with my reproductive system and fertility intact. I'd have been a lot less nonchalant laying in the hospital for days sort of enjoying the break and the attention (and the morphine). I'd have been a lot more concerned about that surgery if I'd know what it would do to my nerves and how much damage I'd still have a year later. I'd have stood up to the doctors who thought it was okay to call me out of the blue one day on the phone and say "You have cancer, but we think we got it all. But we'll have to check" and the doctor who told me there was absolutely nothing more she could do for my pelvic pain because she'd already operated and couldn't see anything else to fix. I'd have fought harder when I went to the ER with a cyst bleeding into me and they sent me home, if I'd known the shape my pelvis is in now. I'd have eaten healthier and kept at the rehab workouts I started so that maybe this autoimmune stuff wouldn't have progressed. What I'm saying is that in no form did I conceive that I wouldn't be perfectly mended and back to normal by now. And really, nothing turns out the way anyone pictures it. But I still struggle with this reality. I pictured a healthy, vibrant, healed life.  I guess I thought I could compartmentalize that whole episode and everything would go back to normal. Nothing is normal anymore, but I can say that some good did come of it. I'm a far stronger person now, and looking back on an entire year of pain and sickness and procedure after procedure that I braved shows me that I have the capacity to overcome much more than I'd have given myself credit for. The love and support that I've received from family and friends and coworkers has been amazing and has let me know what great people I have in my life. If I had hopes for this next year, they'd be very similar to the ones I had last year. There are some things I'll plan and strive for but I know that realistically it won't be the year I hope for. Some days that's a bitter, bitter thing. The other days I try to steel myself and remember that where there is life, there's hope. And just because it may not be the year I want doesn't mean it can't be a good one in ways. There are times where I want to throw in the towel. To simply stop working, be on disability, stock up on pills, stay at home, and live the medical life I seem ordained to live. But I don't want that life. I'm not ready to give up on the dream of having a normal life where I get to do everything I dream. I'm not ready to let go of that yet. So while, having learned what I've learned, I will curb my expectations of what the next year brings, I won't give up hoping and fighting.

I may wish things were different. But as Gandalf says, "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.".

Endoscopy

Something has been bothering me today. It started out as sort of an unconscious niggling or feeling that something wasn't right. But as I tried to go eat some delicious cbs fries, my painful stomach made the problem apparent. It's so odd isn't it, the way something happens and you think you've handled it, only to have it rear it's ugly head sometime after.

I'm talking about the endoscopy and biopsies I had yesterday. And while I was initially very sure it hadn't been a pleasant experience, I assumed I'd put it behind me with gratitude that it was over. But today it made an appearance in the form of mild panic, anger, tears, and an upset stomach. I'll explain. 

When my endoscopy was scheduled, it was with the same doctor who had done my colonoscopy. It was agreed I would have sedation as I have developed a growing phobia of medical procedures. On the days preceding the endoscope I tried not to be worried and comforted myself that I would be out like a light and waking up after with no recollection. I was pretty calm as we waited in the waiting room yesterday for me to be called back. I finally was and the nurse sat me on my bed and began to ask me questions, til we got to the "any allergies?" question. I replied that I have an intolerance to Versed, which is one of their sedation drugs. Thus the nightmare began. The terse reply I got was "well, we're out of anything else so you'll have to do it without sedation." She then left and as a symptom of the panic bursting up inside me, I burst into tears. Tough, right? I continued to cry as nurses came and went, put an iv in my hand, and once offered me Ativan to calm me down. I remember asking what happened after that then, when I got into the room, because I didn't want to do it without sedation. She just smiled and patted my arm and said the doctor really wanted to do this test. I agreed to an Ativan, of which I did not feel a thing probably because I was so upset at this point. Maybe five minutes later a nurse came back and said it was my turn. I was mute and shaking by now as I was wheeled in to the endoscopy room. Inside a nurse was setting out the endoscopy tube, another folded my pillow in half and told me to lay on my side facing her and that everything would be alright. I was still crying as my GI doctor came in, she asked me to stop crying, sighed and said "do you want to do this or not? We can stop" At that moment I felt a little stupid and a little ashamed and afraid of wasting anyone's time or worse, having to do this all again. So I said yes, we could do it. The nurse gave me a small amount of fentanyl to slow my gag reflex and put a plastic bit in my mouth to guide the scope. There was no preamble after that. The nurse had me grip the bed and told me to take deep breaths. The scope, which is about the size of a pinkie finger and cased in hard rubber, was pushed down my throat, through my esophagus,through my stomach and into my duodenum. The whole time I was gagging and vomiting up clear liquid which the nurse kept ordering my to spit out around the scope. Finally it was in place and then biopsies needed to be taken. So tools were swirled down the scope in rapid jump rope like motions, and then pressure when the biopsies were being taken. The scope had to be pulled out part way to get at my stomach and esophagus and the pulling out created whole new rounds of gagging. My doctor kept telling me I was doing so well, better than she expected, but I was fighting to not throw up. Every time I gagged my throat would close, but it would close on this hard rubber scope that was in the way. The scope was withdrawn when she was done and I did throw up then. I was shaking and hyperventilating, the nurse gave me an oral medication to help me calm down as my blood pressure was super high. The nurse asked me "are you glad you did it, was it okay, even though it was uncomfortable?" Which I thought was strange and my doctor asked me about my Halloween plans and told me about what she saw. Then I was wheeled back to my room and told to rest, and I just cried. Awhile later they let me up and let me go home. Now I thought, was this their fault? Was this my fault for not speaking up and saying I didn't want it if I didn't have the sedation? It's probably both. They were trying to be kind, and just trying to get it done, but it wasn't what I signed up for. And sure, people elect to have this procedure done without sedation, but that is their CHOICE. And I was left all the more feeling cheated because though I maybe had a choice, there was pressure not to exercise it, to just brave up and do it. The never ending parade of medical procedures, almost one a month now, already has me raw and off put. I didn't need a new reason to fear them, but now I have one. And I can't help feeling that for most doctors, after so much time and effort on their parts, I'm just a numbered patient that they're on a mission to cure. Instead of a girl who's afraid and didn't ask for this and doesn't want to do this. Yes, hospitals are understaffed and on a time crunch and doctors have more pressure than ever to treat more patients. But I don't deserve to be treated harshly and then sent off until the next round. Friends tell me what I'm feeling about it is normal and it's okay, and anyone would feel violated or mislead or upset. But it's not okay, because I'm not even close to done having to submit myself to tests and procedures and nurses and doctors. And I can't help being afraid of coming out with more than just physical marks to show for it. But you just keep on being strong, because there isn't any other option. You keep on saying yes because there's no giving up.