Well, I know it’s been about a week or two since I posted my last post. I have just been relaxing trying to get my mind together. Going through what I am going through can sometime play with your head and make you doubt yourself all together and that’s where I was. I will say that I feel good and here I am, back. But off the bad, how are you! Well, in April I applied to four different hospitals to get on the list to get a Kidney Transplant. Well, last week I was denied from one of them. Everything was good except my weight. They explained in my denial letter I have to be 179 pounds in order to receive a kidney, which means I will have to lose about 35 pounds to get to that weight to even be considered to be eligible to get on their list. At first, I was upset, discouraged and was very close to saying “forget all of this kidney crap”. But I was reminded that I inspire many people and people who are older than me and even more successful than me admire how far I’ve come. People are watching me and I just don’t quit. That’s not my usual self. I thought back and I was 179 pounds two years ago! So if I did it then, why can’t I do it now!? I was then motivated and started walking again. Back then, I walked two miles four days a week and I dropped down to that slim 179 pounds, which is a size 12 for me. I will do this and I can because I have faith in myself. I’m not big on eating so that part is fine. I am excited for that weight loss so I can fit back in all my good clothes!
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.
So, the 2016 Palm Beach Lupus walk has come and gone and it just wouldn't be right if I didn't show pictures or tell about the experience. Now to most situations, there is always a good and a bad, but here, the good outweighed the bad. I was so happy to be in a place where there were people just like me, fighting a disease with all they got, one day at a time. I was so happy to see the families of everyone out supporting their loved ones. I wanted to run around and jump, but I didn't want to embarrass my team so I kept my excitement together. I was so happy to have some of my closest family members by my side, supporting me, like they always have.
Dealing with a chronic disease is very heartbreaking but it's worst when you don't have your family and friends there for support. To all my family members, church members, and friends that came out to support me, I thank you. I thank you for always believing that I could do better and be better despite the obstacles laid before me. I thank you especially my family for sticking it through all the way and being there no matter how bad Lupus got. This Lupus journey can't be done alone--this journey has been a team effort. Even though they may not fully understand because they don't have the disease doesn't mean that they can't comfort you. Ok, off the mushy gushy, back to the walk--I felt my eyes watering up.
You don't meet many people on a day to day basis that have Lupus so being in a place full of Lupies was exciting because you get to get the first hand look and knowledge with people with other types of Lupus--yes there are different types. So, I saw people with Discoid Lupus. That is where Lupus attacks the skin and joints pretty much. Rashes form on the skin and cause really bad bruising. To paint a better picture, imagine that you were riding a bike, and you fell and scrapped your arm and all the skin came off, revealing the pink flesh. That is what Discoid Lupus can look like. Bruising like they hit something or bruised themselves. I looked at one woman with Discoid Lupus and it made me wonder. I asked myself, "which would you rather have? Systemic Lupus or Discoid". I always felt like Systemic is worst because of it touching and shutting down organs like a flood. Because of it's deadly silence through the body without making a single sound. I thought systemic was worst because I felt like I get some of the Discoid plus more; I am on dialysis for crying out loud. But after seeing many with it, they are equal. I wanted to ask her how does it make her feel. I wonder if it lowers her self esteem because she is always conscious of what everyone around her thinks. I didn't ask her, even though I should have.
Besides that, the walk was awesome.Even though it was hot, I was happy that the rain stayed in the sky. It was very short and quick but I was definitely aching later.
So, before I get to the niddy griddy, I feel... ok. My legs have started acting stupid again and Brenda (my body) can't seem to fall asleep at night. It is SO aggy, but, it's all good because it always makes the story greater. NOW on to the point. We all have pet peeves (did I spell it right?) that we want people to know and understand so that they don't get that eye, an ignore or a straight cuss out. As a LupieGirl, there is one that almost out beats the rest. I had to chat about this one because this continues to happen to me and each time it makes me more and more upset. Lupus is already stressful because of the life changes that a Lupie has to make. We have to change our eating habits, drinking habits, hanging out habits, sleeping habits, and so on. As a Lupie, I am pretty sure other Lupies can attest to this pet peeve of mine. If not, then Oh well..
(In my RATCHET VOICE) I CAN'T STAND.....
The Lupus Walk is coming up this Sunday and like other events, I'm excited, nervous, overwhelmed and blah, blah, blah--you get the point. However, there have been minor issues that have been bothering me in regards to this walk. Now to clarify (because people can take things out of context), it's not the walk that is frustrating, it's trying to get those to join you in the walk that is. I have 1000+ friends on Facebook and I couldn't even get over 20 people to register to join me and walk for Lupus! How crazy is that! Yesterday I was hot as fish grease but I had to realize that people don't understand until it hits home and I RESPECK that. But I have shown people for years through statuses and pictures just how serious it is. It's so hard to get people to see the importance of something when it doesn't affect someone personally. I've seen people stand up and support causes like Breast Cancer, the March of Dimes and so many other more walks. It just hurts sometimes when people see one disease to be important over another. They are all so important. But it is fine. Even if they don't see it, I do because I remember when I was in the hospital and couldn't walk to the restroom and back. I couldn't even stand on my own. I could barely breathe, begging my mama not to let me die. So to walk this walk means a whole lot to me. I fought for this and I WILL do this either with or without them.
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.