As much as I wanted to do day by day posts it is virtually impossible. Days ran into one. I wasn’t fully concious all the time so I am left with memories that don’t have an exact chronological order.
One of the most horrific parts for me was their inability to find a suitable vein in my hand that would hold up for the IV line. Basically they were needing to change the line everyday because my lines blew and I kept tissuing. Yes, I know cool terms like tissuing. I would tell the nurses when I spotted tissuing.
Tissuing is when something goes wrong with the needle in your hand. In my case the veins would blow and one time the needle was bent in my hand. So what happens is that the contents of the IV bag goes into your hand and not into your veins. On so many occasions I looked like I had elephantitis! Totally deformed!
On top of this we had the blood test shadow dwellers (taking blood at 4am) who would come find veins wherever and start puncturing me till they found a vein that gave them some blood. Like real vampires. Operating at night. Taking your blood at ungodly hours. Suspicious. Damn weirdos. What a way to wake up!!!
Prior to having lupus I had amazing veins! So easy for IVs and blood tests. Now my veins have gone into hiding. Like witness protection programme or something. Changed their names and switched the location off on their phones! Such arseholes.
There was an incident where blood was taken by a lady from the lab. She comes back an hour later and says that is there a problem with 5 of 7 vials. Sorry what? “Umm it kind of clotted” she says sheepishly. Oh for the love of God. “It’s fine. Just take more” I say. It is in fact not fine but really what the hell am I going to do? Go out and start begging for blood donations??? Not going to happen. Besides, I’m in so much pain, discomfort and so weak I have no desire to do anything about it.
Then I got a new roomie! A sassy old lady. From the time she came in she had me in stitches!! The blood lab lady came. She attempted a vein and Tannie Margret lost her shit! She basically screamed that you cannot get blood from that vein! The woman gets blood from the vein and says “I told you I know my stuff”. To which Tannie Margret quips “Nonsense man, you got lucky”. She was due for surgery that day. A stent in her leg. She was not allowed to eat. Unfortunately the vascular surgeon had encountered a massive emergency in theatre and it threw the op times completely off.
She was in her op gear. That terrible gown thing and those sexy throw away panties. She demands that I tie the back really tight. Yes mam. She then says “I’m going to smoke! This is bullshit now. I’m gonna drink water from the toilet tap. I don’t care!” I decide to go outside with her. We get to talking and she is just so funny. A breath of fresh air in such a dreary space. She tells me she has heard of lupus but never knew what it actually was. She urges me to write an article for YOU magazine if awareness is what I want.
Unfortunately her op doesn’t happen. In theatre they realise she will have heart failure. So she has to to see a cardiologist. She’s bummed but I’m secretly happy I will have her as a roomie for a few more days.
It’s funny how when I have my hair tied up and I’m in jammies, nurses dote on me. All the staff in the ward now know me. The kitchen ladies know that I want black rooibos tea with brown sugar. They all go out of their way to take care of me.
Believe me it’s a really good thing to have these relationships when you’re stuck in hospital. You’re kind of at their mercy for many things. I was at the point where they would let me come to the kitchen and make my own tea if I wanted extra. They had other things to do. I would say you continue and I will do my own thing. They appreciated this.
At another hospital I frequent I once walked into the ward and two of the nurses came and exclaimed loudly ” Hallo my friend!!!” Yeah, I’m clearly in hospital too much!
The two cleaners who took a liking to me and not in the friendship kind of way, came and cleaned the room and bathroom a few times a day, even though it was just two of us. So I definitely had the cleanest room in the hospital.
We often complain about nurses but I have seen them in situations where they are treated terribly. My hospital stay with the staff was a good one because I treated them with respect. All the staff. Including the sycophantic cleaner. They went above and beyond for me because I acknowledged them as human beings and respected them regardless of their designation. Sometimes you will get crappy staff no matter how you act but I’m glad I didn’t. Can you imagine having 9 days of crappy staff??
They were still doing tests. I had cardiology tests amongst others. I also had physio coming in everyday for an hour or more. Tannie Margret, after two days remarked that she had no idea that so much treatment went into getting my lupus under control or treating my fibromyalgia. She was horrified. She again said that it was actually important to get the message out starting with the YOU magazine.
Alot of things came together for me. I had clarity on alot of things I was dealing with. The universe was speaking to me. Shouting. In my next post, the conclusion I share some of these things with you.
See you on the flipside!