As drastic and monumental my experience with #cancer has been and continues to be, it is not the only thing that makes Renas Sidahmed A Hot Mess. For 21 years I have suffered from #©CIUE-Chronic Illnesses Under Estimated (not all appeared at the same time), which consist of:
– #Endometriosis – Stage 4 and back for the 3rd time
– #PCOS (Poly Cystic Ovarian Syndrome) – kept at bay by hormones
– #IC (Interstitial Cystitis) – flare-ups causing incontinence
– #Ureaplasma – treated for it three times and prone to reoccurrences
– #IBS (Irritable Bowel Syndrome) – a part of my daily life
– #H. Pylori (Helicobacter Pylori) – treated for it four times…
– #Depression, #Anxiety and #Panic Disorder – a part of my daily life but on the mend
In case you need to do the math: I am 34 years old my birthday is July 8th 1982, and my story begins a few months into my life as a teenager.
At the age of 13 in 1995 I developed #IBS. Of course I had no idea what that was, all I knew was that I had ‘#tummy troubles’ – #abdominal pain, #bloating, #gas, #diarrhea, #nausea, fickle appetite, etc. I was starting high school that year; yes folks I was somewhat of a prodigy or genius child if you like; but I digress. I did not think much of it at the time, as I also did not know what to think. I assumed it was my #bad eating habits (I was a very picky eater as a child), or the high stress/high tension environment that was my home. As a child of immigrants it was only logical that for my parents education was top priority, over everything else, including health. I didn’t particularly mind that way of thinking because as it turned out keeping my nose in the books was actually a relief.
I was generally an #independent child, and also not so much a child. I had to grow up fast. Studying and extra curricular activities kept me busy and out of the crossfire. I welcomed the late afternoons of sports, sculpture and piano. When I turned 14 and became a sophomore I was fully immersed in ballet and that took up my time 6 days a week. That didn’t mean that I could steer away from my studies. Oh no. if I wanted to go to ballet I had to be damn sure I was getting A’s. So that became my life. School, dance, and keeping to myself most of the time.
As much as I love to cook, and I’m told I do it quite well, and love food – especially trying new things, and I will most likely make a career out if, eating has never been much of a #priority for me. As a child I would eat ONE thing for a period of months, then switch to the next food item. Once it was ketchup sandwiches, yes people two pieces of bread with ketchup in the middle. Why? Beats me. I think I just liked the taste and I loved bread as a kid. Bread and butter was a staple for me. Oh how I miss it. Damn IBS and Endo!!! Another time it was green apples. This went on for years, actually all the way through high school and some of college. As I got older I obviously introduced certain foods into my diet but whenever there was something that I really liked my very patient and loving mother would make it for me everyday until I got sick of it. Yes I was a very #annoying kid when it came to food. Otherwise I was an angel. 🙂
In 1999, at the age of 16, I got my #period. Luckily I was at home. In my house many things were not necessarily talked about or if talked about not in great length. When I got my #period I knew what it was of course but I freaked. I was home alone and called my friend, mostly out of disappointment; but also to ask what to do. I had a brain fart. As you may have an idea of who I am already, it comes without saying that I was pissed off!!! I was never one of those ‘Are you there god? It’s me Margaret.’The longer it stayed away the better. Never cared for boobs either since as a dancer it would only get in my way.
Growing up I #never saw the #joy in being a #female. I tried to be a Tom boy for as long as I could. I even wished I was a boy. Being a girl felt like a #curse. Too many restrictions, too many issues that for me would just get in the way of my life really. I sometimes wonder if my #vagina #hated me so much because I hated her and the #Endo was a result of that #hate. She wanted to remind me that she was there to stay and that I was a woman no matter what I wished for. Eventually I had to give in and listen to her once I found out I had Endo. Little did I know I was opening up Pandora’s box.
Immediately after developing I had problems. Pain, irregular periods, etc. My mom took me to the #Gyno and I was told that my right ovary was underdeveloped. This was to be the beginning of my Endo journey. So for the next year I had periods every 3 months and they were #unbearable! The #pain, the amount of #bleeding. Now my mom is quite traditional so tampons were out of the question at the time. So pads it was. Then I graduated high school and decided to get on the pill to regulate my period. I was under the #impression that it was #unhealthy to have sporadic periods so I needed to regulate it. I tried several birth control pills which all just made me #sick, #nauseous, #uncomfortable, etc. but I let it slide for 4 years. It was only when I moved to California that I discovered the depo shot. That’s was my savior. A shot every 3 months! No annoying side effects and no period!!! Yay!!! I knew nothing of the side effects of having progesterone only hormones, which was amazing and still is because my body seems to hate estrogen, which I would find out over 10 years later. All I knew was that the shot stopped my period. It stopped my pain and it didn’t make me fat. I finally found something that worked for me. Or at least I thought so.
Fast forward to June 2010. I was still on the depot shot and I had moved to Washington, DC at the time for work. I was home on a weekend and started experiencing unbearable pain. I could barely get up to go the bathroom and peeing was excruciating. I started experiencing cold sweats as well. I figured it was just really really really bad cramping and that soon it would pass. The next day, Sunday, after a sleepless night and having only 3 Tylenol PMs in my house that I was rationing, I noticed #heavy #bleeding. I hadn’t bled on the shot for years! I knew something wasn’t right but waited until Monday morning to call my Gyno first thing. She asked me to come into the clinic ASAP. So I got on the bus, still in excruciating pain as I figured it was ‘just a bad period.’ My Gyno then told me that I should go see a specialist because she suspected #endometriosis. I went and that was what I was told. The doctor put me on the Lupron Depot shot which basically makes you feel as if your are going through menopause. I was supposed to take 2 shots, one every 3 months, but after the first one I said fuck this. I felt worse than before and I was going through #menopause at 28!!! [Furthermore, the doctor #didn’t #care enough to take the time to explain Endo to me. I had no idea what the fuck it was. Never heard of it in my life. She saw me for a few minutes, gave me the shot and sent me home with some #bullshit pamphlets. What I know I learned from my next doctor and from reading.] I basically told my Gyno that this doctor was the #devil and that I needed to see someone else. She referred me to a practice in DC where I met the most #amazing doctor who fully understood what I was going through. Together we worked out a game plan and figured out what form of hormone therapy could work for me. By then I had try Ortho, Ortho Trycyclene, Alesse, Yazmin, the depot, the Lupron depot, as well as a few other #BCPs (birth control pills).
Of course that wasn’t the end of the road for me. Having been on the depot shot for so many years I found I had something else that was caused by the lack of estrogen in my body. But folks, here is where I will end this for now. Next year, in 2017, I will go into further detail and talk about my #surgeries, dealing with endo not knowing anything about it, my state of mind, the works; but I will leave you with something #positive that I experienced only a few weeks ago.
Being in London and taking time off to deal with the emotional side effects of having #cancer, I decided that I needed to find a support group for my Endo. Plus I had recently had an Endo flare up, as in debilitating pain and cramping that had me in bed for 48 hours. Barely any food, water, or visits to the bathroom. So I attended an event with the North London group and had a very #interesting conversation with my endo sisters. About how we felt knowing what was wrong versus not knowing. How you #perceive things. How it has #changed you? How it has #made you #feel. I actually felt #worse knowing whereas some felt better. Growing up for me the pain was normal. I was never told it was any different. So I never said too much of it. I was in pain. My periods were sporadic to non existent. And all the while for me it was just life: I never felt the need to question it or call the doctor or go the #ER. I think that if my #cyst had never ruptured I would be in the same position as I was 18 years ago. It was what it was. Nothing for me to think otherwise or to be worried about until I was diagnosed with this fucking #©CIUE. My life #changed #completely. It was all about doctors visits and finding out what was wrong with me. Tests, PAP smears, pain killers, therapy, antidepressants, anxiety medication, blood work, and not to mention the effects of the other# ©CIUE. That was the extent of my life and it still is today.
Being a hot mess is a never ending process. You have #big #messes and #small #messes. It’s just part of who I am and I have learned to #accept it and #love it. It is me. Over the years the level of mess has fluctuated. Sometimes #severely. Recently it seems to have hit a #plateau with a few bumps. A few nights ago I lost it. I had a semi #breakdown earlier in the day and then at night it was the highlight of the hot mess show. I was #bawling. Poor #Clement. He just held me while I blubbered between sobs until I eventually calmed down. Why the #breakdown? Fuck if I know. I’m #hormonal. I’m on #downers. I had a bit too much to drink. What can I say? #I’m only human.