So it’s been awhile. I’m sorry about that. But the last half of 2018 was pretty scary for me. Pretty damn scary. This is a personal post, and things are about to get personal, so if you don’t like to read this kinda stuff, then I would probably skip this read.
It all started on a late July afternoon. My husband, Cody, was out of town. I was catching up some editing. Had just got my hair done (my fav, blue and purple). I went to bed fairly early, tired from they busy day and work that morning. I awoke in the middle of the night in what I can only describe the worst pain I had felt (up to that point) in my life. I assumed I was having another cyst burst, and took some pain meds and tried to fall back to sleep.
See I have PCOS (poly cystic ovarian syndrome), so it’s not uncommon for me to wake up with terrible pain. Occasionally, we do go to the hospital, but for the past few years I have been able to withstand it and just take a day or so off to heal (I’ve been told I have an incredibly high tolerance for pain).
But the pain got worse. Worse than I had ever felt with a cyst before. Not wanting to be dramatic and drive myself to the hospital at 2am, I called my Mum. When I am in pain, that is usually who I want. She stayed on the phone with me for an hour or so. At this point I couldn’t walk to the kitchen. I was crawling. I couldn’t stand up.
Needless to say, I scared the shit out of my cats. And myself.
I took some more pain relievers (over the counter basic stuff) and a sleeping pill and finally slept. Though I was waking up every thirty minutes or so in pain. Around 5am, I text my boss and told him I wasn’t coming in. That I thought I was having a cyst burst (he knows about my condition). I text Cody and let him know what was going on and that the pain wasn’t going away like it normally did and that I may need to go to the hospital.
A few hours later I woke up sweating. I knew something was terribly wrong. I took my temperature, and I was running a fever. I text a friend of mine who convinced me to go to urgent care. By this time Cody was on his way home from up in north Texas (he said he was booking it on the toll road, so he was trying to get to me you guys). I drove myself to urgent care. In urgent care, the lady pressed on my lower abdomen, and I (involuntary) screamed louder than I think both of us expected and burst into tears. She almost called an ambulance to take me to the hospital, but Cody showed up right then. We went to the emergency room, and after waiting awhile, I got some hardcore pain meds, and a ct-scan.
When they came back and told me I had a kidney stone, I honestly was in disbelief. I just knew it had to be my ovary. They said there was a cyst on my left ovary, but it didn’t seem to concern them. Also, if any of you know me you know I don’t drink sodas, caffeine, juices, really the only thing I drink is water and wine (and that is on a reasonable level). My diet didn’t consist of anything they mentioned, so I think we were all stumped. Regardless they sent me home (without pain meds, I want to add), some antibiotics (my urine had a minor level of an infection that they said they would just go ahead and treat to be safe), and a kit to try and catch the kidney stone.
Two days later I was back in the ER because the pain was NOT going away, my fevers were getting worse, and NO KIDNEY STONE had come out. Another ctscan later, I was informed my ovarian cyst had grown a little, but they weren’t too worried. They couldn’t see the kidney stone, but thought I had an obstruction from it (I forget the term, but something like that). But also, they had found something else – an giant cyst in my right abdomen (free floating, meaning not connected to any major organs). They said it wasn’t the source of my pain, but that we should keep an eye on it. Also, that ER doctor was pissed they sent me home without pain meds. He was really nice.
A few hours later, I was hungry, but they wouldn’t let me eat because SURPRISE YOU ARE HAVING SURGERY. Y’all. I have never been under before so I was like WTF AM I HAVING SURGERY FOR? They wanted to put a stint in my left ureter (the thing that leads from your kidney to your bladder) to help the urine flow and the stone pass (because even though it didn’t show up on the ctscan, they were SURE it was there). When I got out of that surgery, I wanted to shower. I surprised the hell out of my nurses. So they let me, but then I started shaking. I couldn’t stop. The pain hit me like a ton of bricks. I was screaming and shaking, and I couldn’t stop. Morphine wasn’t working (which it didn’t really work to begin with, it only takes the edge off for me). So they gave me dilaudid. That stuff works. I don’t remember much after that except I really wanted to leave, and in the middle of the night one night an elderly patient on the otherside of the ward I was in died. They tried to bring him back and had all these alarms going off. I prayed until I fell back asleep.
I should mention, my Mum did come and stay with me during this time too. I don’t remember when she arrived though. I was out of it.
We went home, my fevers spiked. Every day it seems like we had to call and they called me in another antibiotic because I wasn’t responding to anything. By the weekend, my fever spiked up to 103.7. I was shaking so hard, I couldn’t stop. I don’t know to describe it. But it was like something else took over my body. I was trembling from head to toe and I couldn’t stop no matter how hard I tried. We were both scared and went back to the ER. Where I sat for an hour, shaking and drenched in sweat until they called me back.
An infection had spread to my blood stream. I was septic. My ovarian cyst was 10.2 cm. The largest one I had ever had. They put me in a room where I stayed for a week while they tested out antibiotic after antibiotic until I finally responded. At that point an OBGYN from the specific hospital came in and tried to tell me my 10.2 cm cyst was normal. Out of all the doctors I had in this ordeal, I hated her the most. I tried to explain my condition to her. Explain my history. Explain how this was not normal. She ignored me. And left. I never saw her again. At this point I had over 10 doctors assigned to me and constantly visiting trying to figure out what was wrong. I had lost about 15+lbs in a matter of days, I looked like death (or so my friend who came to visit me said after the whole ordeal).
I stayed in the hospital until that Friday when they removed the stint. That day was a whole shit show with scheduling issues for my surgery and them starving me for it (including not giving me any pain meds). I don’t want to call out this hospital on that bullshit, because the nurses there were SPECTACULAR. But that morning I was in so much pain and so hungry and so destroyed from the whole situation I broke in the middle of the hallway on my bed as they wheeled me back up from my surgery room after they cancelled the surgery out of nowhere. I cried, hysterically because I couldn’t stop myself. I have never seen my husband or my mother so upset at anyone (at the hospital, not me) about the surgery scheduling. Even my nurses were pissed at the doctors.
Let’s just skip to the surgery, because the whole situation is getting me worked up again. They removed the stint. The surgeon that did it even said herself she didn’t think I had a kidney stone to begin with and that something else was wrong with me.
I was so sure it was my ovary.
But when we left that hospital, I really didn’t want to go back to them to discuss it. I contacted my INCREDIBLE OBGYN, Dr. Wang. She had me come in and we monitored the cyst for a few months. But before we get to that, I want to just state anytime you are on antibiotics, take probiotics. What happened to me, after being on 10 antibiotics (trying to find one that would respond), was I got something called c-diff. Basically, antibiotics can kill the bad stuff, but they can also kill the good bacteria your body needs. All those antibiotics killed all the good bacteria in my gut and gave me c-diff. No doctor told me about this possibility. So I went weeks in pain thinking I was just healing. But the pain got worse. Fevers got worse. Symptoms I now know as c-diff symptoms got worse. It took four weeks for me to be diagnosed by someone. By then my husband had caught it (because it is HIGHLY contagious. HIGHLY.). I found out I had the morning I was scheduled to go back to work, after I had been at work for a few hours. I cried. I went home and worked from home for a few days. Then returned to work (once my fevers broke). My ovarian cyst was at 5.5cm.
During this time I followed up with some doctors on the mesenteric cyst (that free floating cyst on my right side). Apparently, they are EXTREMELY rare, so no one really had anything to say except to monitor it. I named it Patricia. And I wanted it out. I was worried it was causing my pain that I was still feeling. But I agreed to monitor it for a month. My last ultrasound said it had shrunk a little.
The next month felt like a blur. I was at work, trying to catch up, but I was in pain still. I thought I was going insane. I didn’t think my doctors were taking me serious about my pain and what I was feeling. Once day it got so unbearable at work, I cried and told my boss I needed to go home. I called my doctor and she scheduled another ct-scan. During that, they discovered Patricia had actually never shrunk. The ultrasound couldn’t get the image quality the ct-scan did. Patricia had grown. But so had my ovarian cyst from the last time – it was 7.7cm.
I called Dr. Wang (my OBGYN) and she set me up with a doctor who she said she trusted with her life. He was a specialist known for doing micro-surgeries (small incision, less down time for patient). He fit me in for an appointment in FOUR days. It was a Monday. I went in, I showed him all my pictures and scans. He said he had a surgery cancellation and could fit me in the NEXT DAY to remove Patricia, if Dr. Wang wanted to join him to remove the cyst from my ovary. I cried and hugged him (after he gave me permission to hug him). I was so relieved.
Dr. Wang said she would do the surgery the same day. I honestly wanted her to remove the whole ovary. It had been causing me problems for SO LONG (over a decade people). I wanted it gone. But she wanted to see if she could save the ovary and just take the cyst, to preserve my fertility. This is where her and I have mixed opinions. But I have trusted her for so long with my body, I really knew she had my fertility in best interest. But I really just wanted to be over the whole left ovary causing me so much pain. Constantly. I prayed before my surgery she would take it out. TAKE IT OUT.
We went in at 4 the next morning and YOU GUYS. I have never had such a wonderful hospital experience. The surgery team at St. Davids in North Austin was the absolute best and on top of their game. It was fantastic.
I remember waking up from surgery and them offering me a popsicle. And then they offered me a few more. They kept bringing me grape popsicles and I was so happy. Dr. Wang came to see me. She had removed my left ovary. She said both her and the other doctor had never seen anything like it.
My cyst had metastasized and attached itself to my colon and was covered in an infection. The infection was spread all over. SO. THAT WAS THE SOURCE OF MY PAIN.
You guys, I have never felt so validated in ALL my life. I thought I was crazy telling them I was still in pain. But that was it. And it was gone. I stayed in the hospital for a few days, because well – they were worried about me. During that time we discovered I am allergic to iodine and the soap they used in the surgery. That didn’t help my healing once I got home (I was on two rounds of steroids (pills). I was out six weeks of work. I went through a dark time during that. I am one of those people that really love to constantly be moving and doing things – and here I was told I couldn’t. I felt useless. But things like showering, cooking food, even going to the bathroom – they were hard to do. They also found out I was anemic. They attributed it to all I had been through and suggested taking iron for a month or so. That helped with the dizzy spells.
I lost a lot of hair. My hairdresser lovingly fit me in her busy schedule and had to cut a lot of my hair off. My purple locks were gone and I went back to brown.
But during that time I started editing a lot of my old conceptual images. Testing my editing skills. Working my brain. During Thanksgiving, I did a shoot with my cousin in her backyard (they made sure I didn’t do too much, but goodness it felt good to be outside). Photography got me through that time. It may sound silly, but I don’t know what I would have done without it.
I wrote a little – especially with some of the dreams I had while at the hospital on all the medication. But I really fell back in love with conceptual photography and felt my mind explode with thoughts and what I wanted to create.
So I guess I am saying this is a happy ending. I am all healed up now. I have five little scars on my stomach as a reminder of the entire thing. I have my purple hair back. And more so than I have been in a long time – I am creating.