I know that some of you know that since being pregnant with Alexandr I’ve been ill. No one was sure why or what exactly lead to his early birth really. In the search for answers and with my worsening symptoms on a day to day basis I’ve been to multiple doctors and specialists. The truth is I’ve been ill my whole life. Those of you who know me well know about the struggles I’ve had with my kidneys, my brain, my heart, my lungs, and everything in between. It’s finally got a name, and it’s Lupus.
I have two forms of lupus, and while I am awaiting the results of two more tests to fully confirm the diagnosis, the expected results are already there. Most of the blood tests were taken today at the doctor, and I’ll be getting kidney biopsies done soon. This brings in lupus nephritis which is where the disease damages my kidneys. The wolf inside me is lupus and it’s been tearing me apart for a great many years without my own, or the doctors realization.
This means a lot of changes for me in life, and that I’m going to, unfortunately, continue to struggle. There will be a lot of medication, doctors, tests, more tests, and more managing my life and care. For those of you who do not know what lupus is I encourage you to read about it. It’s an immune disorder where my immune system attacks the healthy tissue in my body. My organs are one of it’s number one targets. When a normal person makes antibodies to fight off a cold or whatever, they do their job, attack the illness and remove it. In my case my body thinks my organs and organ systems, and tissue, are a sickness, and it’s constantly trying to irradicate them. My body is a battleground.
While this is a terrifying realization for me it didn’t become real to me until I saw the look on my doctors face at my appointment today. Watching the concern, and fear, for my health and longevitity scared the absolute hell out of me. I’ve known for some time this is likely the possibility and would most likely be my diagnosis. I did everything I thought I could, but nothing prepares you for when the other shoe drops. It’s like getting punched in the gut by the strongest person you know, and then being expected to walk away clean. On top of all the other problems I’ve encountered, they believe I now also have glaucoma as a result, and I’ve already lost 20% of my outter rim vision. It’s also a very concrete reality that having another child is so inherently dangerous for me that I likely will never have another. I’m so glad Alexandr is here and healthy.
If you see some changes in me, it’s because I’ve decided now more than ever that I must live my life to the fullest extent possible. I must make my time with my son the most worth while I can, and I don’t want to live with any more regrets or sorrows in my life. I have no idea how things will be for me from day to day. I really don’t, but I’m going to do everything I can to greet each day head on in a way that I can be proud of. I’m going to kick life’s ass every single day that I can get the strength in me to do so. Lupus is not a death sentence, but it is a life sentence. I will spend every single day battling this for as long as I live, but that’s okay. I know that I can do this and the strength I’ve had living with this for as long as I have, with no face to it, and not knowing what to call it. It’s shown it’s self now, and I will own it. I can and will be a fighter of this. The wolf and I will tangle, and I may not always win, but I will fight with every breath I’ve got.
To my friends, please be kind, and patient with me. Know that this is going to be a difficult process for me, and I do absolutely need my friends, so much. If I don’t always feel up to talking please don’t be angry, or feel that it means I do not care. This is a lot for me to take in and there’s a certain amount of mourning that I’m going to have to go through.
I leave off with this, Rob Thomas wrote this about his wife, who has Lupus and struggles with it every day.