God am I glad that 2019 is over! What an awful and stressful year… Here’s my 2019 in review:
January: Had severe nausea for nearly a month. I started to get more abdominal pain than usual and pain on the lower right side of my abdomen, doctors thought it was appendicitis but it wasn’t, that leads into February.
In January I started my first round of Zoladex to be put into premature chemical menopause to see if that will help my abdominal pain and suspected endometriosis. *Spoiler alert- it didn’t.*
February: Had an appointment with my gastroenterologist. I was still having nausea and the right sided pain was getting worse. My gastro dr told me to go straight to hospital so I did. While I was there I got a CT scan which showed enlarged lymph nodes and something else. The gastro team told me I had a very rare disease called Mesenteric Panniculitis. They said that they didn’t know much about this disease but that they would start me on high dose IV steroids. I was in hospital for about a week before getting discharged with oral steroids. It took me three months to wean off them. It was awful.
I got my second Zoladex injection middle of Feb. I had a follow up appointment with my gastro specialist at the end of Feb and he started me on Azathioprine (Started that in March) to try and treat the Mesenteric Panniculitis. Got told to do a bowel flush out. Nooooooooo.
March: Started Azathioprine, the side effects really knocked me around. Got another Zoladex injection. My gynaecologist sent a letter to hospital to get me on the waiting list for a laparoscopy to diagnose and cut out any endometriosis they found. Also put my name on a list for a pelvic floor botox trial to see if that would help with my pelvic pain. *Spoiler alert: It didn’t. It made things worse.*
April: For the first few weeks of April I had very severe back pain that radiated to the front. I don’t know what caused it but the pain was horrendous. By three weeks the back pain was easing. Got another Zoladex injection.
Saw my gastro specialist and he told me to take pain killers daily for the pain instead of when absolutely needed. Taking them every day helped with the pain a bit.
May: Start of May I got my laparoscopy and pelvic botox, also weaned off the steroids all together. The lap confirmed endometriosis and it was cut out. Got another Zoladex injection. I had a fatigue and fibromyalgia flare or what I thought was a fatigue and fibromyalgia flare. It actually turned out to be another Mesenteric Pannicultis flare. Spent a week with the worst nausea and right sided abdomen pain. I rang my gastro dr and he told me to go back to hospital. Went to hospital and the gastro drs there put me on high dose IV steroids again for the MP flare. A week later I got discharged and had to take oral steroids for another 3 months.
June: Saw my gastro specialist. He wanted me to start Humira to try and see if that will help the MP.
July: Nothing much happened. Still tapering steroids.
August: Started Humira. The side effects of that were pretty brutal, had to do the very painful Humira injections evert fort night. The Humira also gave me very bad depression, anxiety and suicidal thoughts. Tapered off the steroids. Mental health was through the drain.
September: Was still on Humira, it was still affecting my mood in a bad way. September was spent feeling depressed and anxious and getting sick. Had to stop the Azathioprine immediately because I had developed neutropenia from the Azathioprine and Humira.
October: Saw an endocrinologist because I was worried that the 6 months of steroids had caused something like Cushings Disease. Luckily I don’t have it but the steroids have caused my skin to become thin and stretched causing skin problems. Saw my gastro specialist, he stopped the Humira as it wasn’t doing much to help and making me suicidal. He told me to start Methotrexate injections. Mum had a major surgery which was incredibly stressful. I had two new housemates move in. One of them has been great and I really like her but the other one I’m having a hard time liking and understanding.
November: Started Methotrexate. Wasn’t a fun experience. November was spent looking after Mum and feeling like crap from the weekly injections. The MTX has also caused mood problems. Along with a whole lot more symptoms.
December: Continued doing my Methotrexate injections weekly while having worsened mental health problems. Had my first panic attack out at dinner in months. Anxiety and depression is so much worse. Enrolled to do year 12 online in 2020.
I also had abdominal pain EVERY SINGLE DAY. There wasn’t a day in 2019 that I didn’t have abdominal pain. I also had awful joint pain, fatigue and feeling like crap. 2019 wasn’t a good year for me health wise (physically and mentally). I had surgery, got diagnosed with a super rare disease, looked after mum after her major surgery and was put on meds that caused a lot of problems. I am so glad that 2019 is over and I really hope 2020 is better for me.
I also said goodbye to my social worker at the end of 2019 as I felt like she couldn’t do anything to help me. The past two months have been pretty hard. I’ve struggled a lot with being there for anyone else other than me and mum. I’ve felt drained, exhausted and burnt out. I’ve been having a hard time with my depression and anxiety, the depression has been a different depression to the one I ‘usually’ have. It’s made me extremely irritable and also felt a bit manic at times. I’ve had insomnia for months, meaning I haven’t slept properly in months. I feel like I have no extra space in my brain for anything… I feel so completely and utterly drained and lost.
Here’s to a better 2020.