So, many people ask me the same question when they see me and I always respond with the same answer. They ask, “How is dialysis going?” and I reply with the same, “It’s going good” line. Honestly, doing manual Peritoneal Dialysis is going great. I can do it pretty much with my eyes closed and I am starting to learn how to work the machine (Automated PD), which seems difficult, only because it is something new. With manual PD I have to complete an exchange four times a day, about four to six hours in between exchanges. It takes me about 45 minutes to an hour to complete one exchange but I would rather do that than to be cooped up in a center for 3 hours ANY day. So why is the title of this entry Discouragement if I said out of my own mouth that everything is okay? Honestly, I am still struggling to accept it all. Imagine, being 24 years old, in Grad school, living on your own, have your own car, an awesome job with one of the top non-profit organizations in the nation—pretty much as independent and good off as they come. You have a chronic illness, but you have learned to live with it and not allow it to overwhelm you—but then you are hit with the devastating news that your kidneys are failing and they are failing very quickly. It went from having 20-40 years until you start dialysis to you have about a month before you start dialysis. Having Lupus was a life changing experience, but NOTHING like dialysis.
I went through two surgeries and stayed in the hospital for a month because my body wouldn’t bounce back. Lupus then came out inflaming my chest and it was just hell. Finally went home and had to give up somethings that I said I would never stop doing because I would show that I gave up. I feel like I have given up in a way. I don’t do some of the things I used to and I have been restricted from doing certain things like getting in the pool or the beach. Since I have this catheter in my stomach now, I am PROHIBITED from ANY sitting water. I can only take a shower—a get in, get out kind of situation. Family and friends KNOW how feel about my apartment. It is decorated to feel warm and “homey” when you’re there. People come in my home, sit on the couch and fall asleep. The beautiful aroma of Bath and Body Works air fresheners scents the room and it’s my BABY! (SIGH) My own little hut; but it’s nothing like having your own. However, now with all the medical supplies, I feel like I am at an ongoing clinic or nursing facility camouflaged to LOOK like “home”. Boxes and boxes—19 to be exact—are lined in my closet filled with bags of fluid that assists my kidneys and keep me moving. How and when will this be over? I applied to hospitals for a KIDNEY! Something I only saw and heard about on TV. I lost some of my good doctors because my insurance wants to be a donkey; you know what I am trying to say. But now I have a secondary insurance, something that I thought you could only get if you were 65 and older. But I thank God for taking that class, teaching me about the importance of health insurance. Now I can go back to my old doctors. I guess that is sweet. I know people want me to “be thankful” and “there are others going through worst” and I get that. But this is where I am and this is my bottom. I get up everyday understanding that I have a disease that isn’t going away. People think it is only supposed to make feel better and cope better and it doesn’t. I had dreams and aspirations just like everybody else and I feel that they are being shattered by something that I never would have or could have imagined. I wouldn’t wish this on my worst enemy—even though I don’t have one. I am still struggling to accept this. I am struggling to cope and just really accept that I have Kidney Disease; all because of Lupus.
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.