Going through lupus flare up can either be constant joint pain, exhaustion or for me failing kidneys, edema and ascites.
I was in the hospital for about a month because my flare up was that bad. I told the doctors that this is probably my longest flare up as it started late January-February but after looking at my past blood counts, I noticed it started to go down in December. I wish I paid more attention back then because here we are at the end of June and I now have to deal with an abdomen full of fluid that I have no idea when will go away. Not only that but although I was discharged, I was discharged with low counts still and a midline IV still in me to get any necessary treatments and/or blood or platelet transfusion.
I’m supposed to get blood work done every Monday and Thursday so they can monitor what’s going on and it always sucks when after I get blood drawn I get a call from my doctors saying my counts are low again and I need this or that transfusion. I just want to be better but if my body has been suffering for more than six months then I have no idea how long it will take.
Due to my failing kidneys, it became very hard for my body to produce urine so I slowly started to just build it up inside me. At the hospital, I was given cytoxan (a type of chemo) and a lot of saline afterwards. I ended up with edema because of it. They did gave me lasiks to help me urinate but apparently it wasn’t enough as the fluid stuck to my body. I’ve been wearing compression socks for at least a week now and I do notice I’ve been urinating more but I don’t know if it’s also because of the lasiks or my kidneys are getting better.
The ascites is what bothers me the most. I have no idea at all if I’m losing any fluid in my abdomen because I feel like I look the same everyday and although I am losing weight I feel like it’s only because I have less of an appetite due to feeling full already. I’ve had paracenteseis procedures done three times already but I don’t want to continue to rely on it because the fluid does eventually come back, at least for me. I don’t have shortness of breath but it is hard to bend over, get out of bed without some support, get out of the tub, etc. I want the ascites to go away but I feel like I have to just wait until it goes away naturally.