It’s taken me a while to get this blog post up but I’m finally getting around to it. I was in hospital from the 30th of May to the 4th of June.
My brother died at 12:12am on the 31st of May so in my eyes the 30th and 31st of May are both the death anniversary.
I had been unwell for around 2 weeks before I went to hospital. The Mesenteric Panniculitis flared up after I weaned off the steroids I got put on in February when I was admitted to hospital. It got to the point where I hadn’t eaten or drank anything properly for two weeks and I was also in so much pain that I couldn’t move so I rang my gastroenterologist and he said to go to hospital straight away. Unfortunately that was on the 30th of May and my specialist didn’t want me to wait to go to hospital any longer. I got to the emergency room at 3pm and it took 7 hours to be seen by a doctor. The emergency room was full and there were no spare beds so they transferred me straight up to the Gastro Ward at midnight. I was awake at 12:12am and I was able to have a little cry but then the nurse came and I had to lock my grief down and answer all the admission questions. My mum stayed with me until I got a bed on the ward but she had to go home to get my dog and look after her. It felt horrendous to be in hospital on the same day that my brother died six years ago. I felt awful making mum sit with me in the emergency room for 7 hours and then have to go home by herself. I couldn’t do my usual ritual on his anniversary which is watch a super hero movie, light a candle, cry and go to the cemetery. I was in the hospital for five nights. I got out the day before the funeral anniversary so at least I didn’t have to spend that in hospital as well.
My disease is a bloody b*tch of a thing. I spent 3 months tapering off the steroids just to have to go on them a month later. My gastroenterologist wanted to start Infliximab infusions to try and treat the MP (mesenteric Panniculitis) but my veins are so hard to find, small and deep that that treatment plan is no longer an option so I’m now going to start Humira injections so every two weeks I’ll have to inject myself while staying on the immune suppressants I’m on now. I won’t be finished with the steroids until the 18th of August.
The steroids also bring back a lot of painful memories because my brother was on them before he died.
I don’t even know how to feel about everything that’s happened in the past couple of weeks. The steroids, the hospital visit, the anniversary and more sh*t that I really don’t want to talk about is so much stress for me to handle that I feel like I’m going to scream and blow.
I got my laparoscopy at the start of May to diagnose endometriosis. They found some so I got that cut out and also got botox injected into my pelvic floor to see if that will help with my pelvic floor dysfunction and pain. So far I haven’t noticed a difference in pain and I’m also finding it harder to go to the toilet and get a complete bowel action. I decided not to do my sixth and final menopause injection because it wasn’t making a difference anyway so now I’m just on the pill and I’ll see how long I can go before I start break through bleeding and need to have a period. I am not looking forward to my first period after the laparoscopy and being in menopause for 5 months even though I did bleed all of those 5 months. So basically menopause was a big flop.
The fatigue struggle is real. Steroids cause such bad insomnia that I spend more time tossing and turning than I do sleeping so I haven’t slept properly in months and my chronic fatigue is also flared up from everything. I would love to have a good nights sleep.
Anxiety and depression are going strong still, not helped by the fact that steroids can affect your mood so I’m trying really hard to keep my head above water and to keep going.
Don’t have much else to say.