Looking at how this experience impacted me.
The current status quos is that I am slowly recovering. I am still feeling rather fragile. I’m in extreme pain with my fibromyalgia and finding it hard to get some reprieve even though I am on schedule 7 painkillers.
Whenever people ask me how I am I respond with “I’m alive”. There are a few reasons I say this. Firstly because lupus is a vicious demon, too often a fatal disease. I’ve seen so many people in the same generation as myself who have died. I am still standing.
I also say this because I have a plethora of symptoms or issues at any given time. Who wants to listen to that? Me giving a laundry list of ailments? When I see you there’s so much else to speak about.
Why I went into hospital
As you remember I went into hospital because my abdomen had swelled up so badly that I looked 24 months pregnant with a baby rhino. Clothing couldn’t hide it and I was finding it hard to eat. Bare in mind that this issue started in August. I was also blacking out and had extreme shortness of breath. I couldn’t finish sentences and I would involuntarily gasp for air. I also had lots of joint pain. Walking was becoming painful because my leg moving in the socket was causing me such pain. There were alot of health issues I was dealing with.
My specialist was so concerned that he went to get me a bed himself. I must say that Wits Donald Gordan is an excellent hospital with really great professors handling your case. He got me into his section which was the transplant section. I was happy to get a semi private room. My roomie however was just so strange! She didn’t talk much which was fine by me because I like to have peace and quiet. I still can’t figure out why she used the toilet with the seat up and left her panty hanging in the bathroom for so long. She eventually went for surgery and was taken to another ward post op.
I was poked and prodded all the time. I’d wake up to someone taking my blood at 4am!! One morning I jumped up when I saw an unknown figure at my bedside with a needle! A shadow figure. He then switched on the light. What the hell? Why didn’t you do that FIRST! What kind of tomfoolery is this!! I had no blood to give. It took forever because it would come out in trickles. 5 to 7 vials a day. We’d repeat this long drawn out process of not finding a vein. Then finding a vein but having to wait as the blood slowly trickled into the 5 to 7 vials.
The IV lines really got to me. Right now I am honestly still nursing some sore veins! I had 8 IV lines. I had to be on the IV so they could run the cow udder bag that was just fluids basically. Keeping me hydrated and such because I hadn’t been eating. Also all the pain meds and whatever else they were pumping me with.
I wasn’t able to urinate properly at first. My output did not correspond to my input. They then decided to put in a catheter to measure it. Oh hell no! Not going to happen. I drank water like my dignity depended on it. Which it did. All this fiddling with me. No. Just no. Eventually I was able to. You cannot imagine the relief! I was also on a diet for people with liver issues because some of my blood results showed anomalies in this area. A bit scary because I actually have to have my liver and kidney function tested every 3 months and here it was for the first time acting up. Pretty scary stuff really. That’s life with lupus for you.
I will spare you the gory details of how you prep for a colonoscopy. It’s pretty brutal! I was on a clear liquid diet from 11am the day before. I was wheeled into theatre for the double whammy. A gastroscope (down your throat) and a colonoscopy (up your bum). The anethetist and my Prof and I were having a good laugh. She even sent him out to get coffee. They were around my age. They told me about a patient who was supposed to be on the clear liquid diet as I was. This guy went and had a chicken tikka masala the night before so they had to remove him from the list. The hospital didn’t even have that on the menu so someone must have come and satisfied his craving. They picked this up when they were prepping him for theatre!! Sent his ass right back.
This really helped my anxiety around the procedures. I then also realised…. what if they do weird things with you while you’re asleep and put it on snapchat! Can you imagine? You’re not asleep, you’re unconscious so it’s not like you’re going to wake up if they’re doing a YMCA video with you!! I did ask the anethetist to make sure she knocked me out cold. She did not dissapoint!!! Luckily nothing was picked up in the scopes or biopsy they did! Happiness.
I then had to go for a CT scan of my abdomen. As an indication of how ill I was, they didn’t fetch me with a wheelchair to do these tests. They took me in my bed. I kept my eyes closed so I didn’t see people staring. In the lift it was an all eyes on me situation. Oh my God so soooo awkward. You know they’re trying to figure out whats wrong with you. Plus when my hair is all tied up in a bun and I have my pjs on I look really young.
Anyway back to the CT scan. If I can give you a word of advice… go empty your bladder when you are going for it! They’re doing the CT scan and now comes the part where they run iodine through the IV. Dear Lord. My pelvic area was on fire! All I’m thinking is “oh shit I need to pee! Let this be over with already!” Now since its on fire I’m not sure if I have my bladder under control!!! Is that warmth the iodine or have I tinkled? Please Lord no. It ends and success! I have not wet myself!
The next day after the Prof does his rounds I experience theeee most extreme pain in my abdomen. I’m holding onto the bed, curled up in a foetal position. I’m crying and sweating from then pain. Luckily a nurse came in and saw me. She called the Prof and the head nurse and they came running. I could barely explain what was happening to the Prof through my tears and sweat pouring down my face.
The nurses were stroking my head and he got a massive dose of either pethadine or morphine and shot me up. It did make my pain subside and I fell into a deep slumber, my body in shock from the ordeal. However, my colon and intestines were still burning. I was suffering from inflammation in my colon and intestines. They kept me heavily medicated for the rest of the day. The next morning Prof came to check on me quite early. “You scared me yesterday” he says. “I scared me” I say. He reassures me that we are going to figure this out.
I attempt to eat a tiny piece of muffin and the pain ramps up again!! The nurses try to do what they can. Eventually the one nurse says “I am going to call him and ask him if we can give you the same injection we did yesterday”. The concern is palpable. I’m given the injection which provides some relief but I realise that eating is problematic. I decide to stick to liquids. I’m force feeding myself anyway because I have no appetite. I’m just doing it because of the amount of strong meds I’m on.
What would my hospital stay be without any far out characters??? I promised that I had some for you!
So now you have to come back for part two of this saga! Alot happens in 9 days! Especially with my random life!