Crappy 2020

This morning it's worse than ever. My arms, hands and neck hurt so much that even the slightest attempt to move makes me nauseous. I manage to get up to a seated position in and have to wait a few minutes before I try to put on a sweater. There's not much left resembling me as I drag myself down to the kitchen to get my first dose of the day. I have to use both hands to get a glass out of the cupboard and swallow the pills. In a couple of hours they will start to work and the body will start to feel a little more inhabitable. I got a new appointment at the rheumatlogist today, so by the time we approach Drammen my body will hopefully be a little less crooked and stiff.

But in the meantime I have to go to the bathroom. It´s a humiliating moment when I realize that I might have to ask my mother for help, to wipe myself. It's a feeling of total helplessness. Fortunately, I finally manage to force my arm just far enough, but the movement makes me  incredibly nauseous and dizzy. It feels like I'm about to faint and fall off, ending up in an equally humiliating position. 2020 sucks. Fainting on the toilet would be the perfect ending to this shitty year.

As we approach Drammen, the medication has started to work and I am finally starting to feel a little better. There's a new rheumatologist I'm talking to this time. Despite the shitty start to the day, I am feeling optimistic and that my luck has turned. So I might just as well ask her if there is any possibility that this is not lupus. She assures me they are certain of the diagnosis. Parts of me have been so certain that there's a mistake somewhere. That maybe my blood tests have been mixed up with someone elses. That my test results miraculously have returned back  to normal. I have not quite accepted that I suddenly have a chronic illness. It is slowly dawning on me that this is actually something I have to live with  and that the miraculous news I am waiting for will never come.

It turns out that the level of protein in the urine is rising, indicating that I have lupus nephritis. Meaning there's inflammation in the kidneys, and the kidney function is affected. Therefore the dose of prednisolone must be doubled. All the side effects of prednisolone are still fresh in my mind, making me whimp. In addition, I will be put on another immunosuppressive medication to treat the inflammation in the kidneys. Since I want to get pregnant and have children, I am prescribed Imurel. "It can cause some cosmetic side effects, such as warts and brown spots in the skin." A loud grunt accompanies the words coming out of my mouth. "Warts? Am I going to swell up like a balloon and get warts?" I hear how silly it sounds as the words leave my mouth.

"The most important thing now is that you concentrate on getting well" her voice is firm but compassionate and I feel a little stupid worrying about weight and warts. Apart from the joint pain and stiffness, I don't feel to bad during the day. but it is quite clear the doctors are worried about my kidneys. My focus on the other hand, is on how quickly I can get better so I can continue the fertility treatments. 

When the conversation turns to the topic of pregnancy, some new information suddenly emerges. One of the autoantibodies I have, SSA, is an autoantibody that can pass from the blood to the placenta when you are pregnant. This can potentially cause heart blockage in the fetus and in some unlucky cases, the child might need a pacemaker. In addition, it turns out that there is an autoantibody I have not been tested for yet that can increase the chance of blood clots and miscarriages. I was not prepared for more bad news. My face bursts into tears and the doctor hands me a paper towel.