Back in mid March I brought home a cat from El Gato, the cat café I volunteer at. I was so excited to have my first pet as an adult, but rather quickly he got sick. His stomach issues were all too familiar in that they were comparable to my own and thus began my re-traumatization journey as I fought for a diagnosis.
Re-traumatization is something we study at my job. It's the idea that bringing up past trauma and going through it all over again can cause your brain to get stuck with it, like you are in fact experiencing it once more. This often comes up in terms of asking a rape victims to go through all of the details again in court if they press charges and go to trial. Since I work with trafficking victims this is a topic we discuss in terms of our youth talking about what they experienced in their home country or on their journey here to the US, whether with us, our clinician, or their psychiatrist. I never expected it to come up for me on my journey with my cat but here we are.
I'm sure many people with Vaginismus reading this can relate to having a history of medical trauma, even if yours didn't stem from a gynecological exam at a young age like mine did. Trying to obtain a diagnosis of Vaginismus is a very difficult task, even if, like me, you already knew you had it and were trying to advocate for yourself. The medical community, not just in the US but everywhere, is great about not believing women and gaslighting us into thinking our medical conditions are all in our head and nothing is wrong. Not only does this cause us to lose precious time we could be spending treating ourselves with proper guidance but it also makes us feed into the ideology that women make things up, are dramatic, and don't generally know what is best for our own bodies.
In terms of myself, I've experienced this medical gaslighting on 3 different occasions in my life: over my back, over my vag, and over my digestion, in that order. The one I'd like to focus on for the intent of this blog is my belly. I've discussed my travails with eating since my Gastroparesis and Hiatal Hernia diagnoses 5 years ago before, and the limited diet I have to follow, but not the difficulty, near impossibility, I went through to achieve those labels.
2016 was already a tough year with the election of Donald Trump weighing down everything, but add to it a sudden inexplainable urge to vomit and you have my lovely winter experience. At the beginning of 2017 I came down with an awful case of the flu, and no matter how much medicine I took, I just couldn't seem to kick the cough. For weeks I was hawking up a lung and my nausea worsened along with my vomiting. First I stopped drinking any booze (I hardly had any to begin with, but didn't want to risk any further damage), then oily foods, then meat, and eventually whittled down to nothing but peanut butter, crackers, soup, and water. This was in Feb and of course I went to a Gastroenterologist expecting to find answers but I was sorely mistaken. They did a stool sample for parasites (even though I informed them that I hadn't left the country in years), an ultrasound for abnormalities, felt my stomach for anything obvious. They kept scheduling me to see a new nurse instead of the doctor and she just wrote me a prescription for anti-nausea meds without telling me the side effects. Thus, I ended up having Hemorrhoids for the first time because she didn't explain that the meds constipate you by overcompensating for preventing the urge to vomit. I kept insisting to see the doctor and when I did he said I was having acid reflux and prescribed me a Proton Pump Inhibitor, a drug notorious for destroying your stomach's ability to produce acid needed to send your food down the digestive track. I felt like it helped my food not come back up my throat, but I still struggled to eat anything because I had lost so much weight and the very act of eating made me feel sick.
I kept taking off work and going back for more tests until finally I had an endoscopy. This involves sticking a scope (camera) down your throat while you're unconscious to see what's going on inside the body. I was absolutely terrified before being put under because I was left alone between some curtains for a long period of time after fasting all day. I mainly remember that they told me I had to pee in a cup to make sure I'm not pregnant and even after I told them I had already gone, had no urine left in me, and was a virgin so I couldn't be pregnant, they stuck me with an IV and pumped water into me so they could force me to go. They were also very rough with me checking my blood pressure and taking blood, with no one ever explaining to me what they were going to do throughout the process. I found out that the doctor who was supposed to be doing my procedure left early that day to start his weekend so they had to find someone else to do it at the last minute and this was why I was kept waiting for hours alone in a hospital gown. The last thing I remember seeing after they wheeled me in was 3 men hovering over me putting me to sleep and I suddenly felt more worried about my safety than I had felt previously.
When I finally woke up I just remember being filled with relief that I would finally know SOMETHING. I called out to a nurse that I was awake and wanted to see my results. She brought me some animal crackers and an apple juice then went to fetch my write up. When she handed it to me I skimmed it, then read it, and looked up at her.
"What does this mean?" I asked.
You'll have to schedule another appointment with your doctor to have him explain it to you," she replied.
My stomach dropped as I realized that I was going to have to drop another $75 (my specialist copay) to yet again return to the Gastroenterologist who had yet helped me at all, but what else could I do? I went back to the doctor the following week and asked my doctor if this was why I was so sick and he said no, this couldn't be enough to cause it because it’s so small. I had a hiatal hernia right where the band of my bra lies beneath the boobs, where the stomach and esophagus meet. It’s basically a little hole which causes the top part of the stomach to pull into the esophagus any time I cough and hurts any time there is pressure on it. It also causes acid reflux any time it’s jostled too much or acidic food touches it so I kissed goodbye to sports bras, running, jumping, roller coasters, and many, many foods and drinks I loved. *enter sad face here*
All of these necessary adjustments I discovered through researching myself on the internet, not from the advice of the doctor. All he offered to do was a “banding” procedure to squeeze and pop my Hemorrhoids with tight little rubber bands *oww*. I tried explaining that I had Vaginismus and there was no way someone would be able to not only reach into my butt hole but forcibly twist something around in there but they tried anyway and, surprise surprise, were not successful. To anyone not aware, the PC muscle is a figure 8 that wraps around both ends so if you clench on the vaginal end, you most likely clench anally as well. It takes a lot of skill and physical therapy to differentiate between each side of the PC muscle and learn to loosen just one as they typically go together. Despite my years of physio I still struggle with this task.
A month later the doctor finally recommended that I have a stomach emptying test at an MRI center. This one involves eating some oatmeal and then lying down to have an x-ray see how much food goes down in a half hour. This was extremely uncomfortable for me as lying down of course made my food travel up my throat rather than go down my esophagus to the stomach. It was determined that I did in fact have a delayed emptying of my stomach, Gastroparesis (paralysis of the stomach) but not a severe one. I didn’t need to be hospitalized and put on a feeding tube and I had already adjusted my lifestyle according to my new found pain and inability to keep food down but now I knew I needed a specially catered diet for this condition. Again, I hope this was something the doctor could provide guidance on but he just told me to make an appointment with a dietician to have a consultation and then go back for them to make me a diet plan. Serious eye roll.
From this point I eventually joined a Facebook group that guided me to the healthy person I am today (though my conditions are chronic and I will live a life full of accommodations forever). More about that can be found in my previous blog linked earlier and for special recipes if you also have a sensitive stomach you can check out this one.
So how does my cat play into all of this? Well, when I first brought him home he was of course scared and hiding but eventually he was running around and playing comfortably in my one bedroom apartment. This didn't last, however. Within a few weeks he was lethargic, having diarrhea, and generally appearing unwell. I had a vacation a month after bringing him home so I waited to see how he would do when I returned. He did well at my dad's house for a week but then seemed to get worse again after returning to me. He had strange symptoms that didn't really add up to any one particular condition that I could research and the vet was very dismissive of the whole thing. He ran the parasite stool sample (sound familiar?) and gave him a B12 shot. His physical examination didn't bring up anything he found concerning so he sent me on my way with no meds or anything. I brought him back without an appointment for blood work because he was barely eating, losing weight, and clearly distressed. I thought it could be his thyroid. Again, the vet came out to talk to me in the waiting room and try to convince me that it couldn't be hypothyroidism as that really occurs in dogs more than cats and cats are more likely to have hyperthyroidism where they are extra energetic. I explained that I wasn't interested in what was common but what was actually happening to my cat. Medical gaslighting much?
Mynx continued to worsen and after my 3rd time taking him to the vet he called me to express concern that he might have FIP, based off his heightened globulins in his bloodwork and his stomach feeling "a little weird". I naturally was horrified because due to my work with El Gato I was familiar with this disease and knew it was fatal. I decided to get his foster involved who works at a vet herself. I had already scheduled an ultra sound with Mynx's usual vet and started a GoFundMe to raise money to pay for it when his foster said to just bring him to her and she'd do it for free. So I cancelled his appointment with my vet and dropped him off with her for the day. Low and behold, when I picked him up 8 hours later he was hiding terrified in the corner of a cage, hadn't eaten his breakfast, drugged up on Gabapentin and not wanting anyone to touch him. He was clearly very shaken and to my horror, I found out that they hadn't done the ultrasound! I l woke up extra early and left him there before going to the office, left work early to make it before closing, for no reason at all. I was told that they took a needle and poked around his belly and didn't find any fluid so he didn't seem to have FIP. I took him home and cried because I was no closer to finding answers for my poor sick kitty and this made all of my own feelings of helplessness come rushing back.
Finally, on the 3rd of July I took him to the ER after finding puss in his urine and got him his official FIP diagnosis. My brother came with me for emotional support (and to help carry Mynx around) and we were there with him for 3 hours. The doctor knew he had it the moment she touched him, asked the assistant to bring in the ultrasound machine, updated his bloodwork, and printed out a long explanation about the non-FDA approved medication to administer for treatment, even though vets here in America aren't supposed to encourage it. She simply listed that I had opted to join a Facebook support group to follow this treatment plan and thus this was the medication I would be giving him. This woman was younger than I am and the way she treated Mynx and myself was incredibly validating. She didn't talk down to me, try to tell me I didn't know what I was talking about, or make me feel like my cat was being unreasonable for screaming and biting while we held him down during testing. She saw that I was a concerned cat mom barely keeping my sanity together but attempting to do the stay-strong-for-the-kids thing for my baby and my autistic brother who really didn't know or care what was going on in that examination room. If more doctors could present an attitude like hers the medical industry would be a far better and more successful space for everyone. We know that doctors often lack empathy and it's something we should all strive to practice every day of our lives.
I am nowhere near the end of my journey (Mynx is starting week 4 of his 12 weeks treatment plan) but he is basically back to acting like a normal, functioning cat. He doesn't sleep all day, he greets me in the mornings, and he has the zoomies again. Giving him daily injections for the past 3 weeks was such a harrowing experience as I felt like I was torturing him but if there's 1 thing I've learned throughout my own medical journey it's that I will fight for anyone suffering who still has a glimmer of a chance. While Mynx's disease is considered a death sentence here in the states in other places around the world it is not and his meds and the plan we follow have a 90% success rate. I hold on to that hope every day that by the end of the year, after his 84 day observation period, my cat will one day be considered cured, a luxury I don't have with chronic conditions.