Well Hey you!
I hope the New Year has been everything that you've wanted it to be so far. If not, I'm not mad because for me, January is just a trial run. February will be the real deal.
So one thing that I keep blabbing about but I never seem to get on it with is this support group. Have you ever said that you were going to do this and that with high confidence and motivation but when it's time to get to it, you're like, " I'll do that another day". See! That is me and I will holler "I'll do that tomorrow" until pigs can fly.
It's like, I can see the support group in my dreams but I just give up or don't even bother with it when it comes to planning and organizing for real for real. This support group has been on my mind for a while now and I really know it can help many people; with or without Lupus. I want to create an environment for individuals that is a safe space for them to share their concerns, receive comfort, motivation and encouragement. I remember when I first was diagnosed with Lupus, I knew NO ONE that had it and I felt alone. I heard stories of people who had Lupus, but the end was always bad I wanted change that narrative.
So why the support group? They already have one in the city.
Can you believe how fast this year has gone by? Soon, there will be the "New Year, New Me" saying. Sigh. Within, two months, so much has happened. I honestly feel like my world was turned upside down; but things have started to slow down and settle for a change. Finally, labs are coming back normal, dialysis is going steady, I've been cleared to return to work and things have been looking up. People have asked, "Brie, what happened?" To clear things up, my kidney rejected. How? I have no clue. One day I was fine and days later I'm in the hospital, damn near on my death bed. I laid in the Cleveland Clinic for TWENTY SIX days. And let me be clear, Do I love the Cleveland Clinic? I do. However, going there will ALWAYS be my last choice. I was stuck over 75 times.
Fast Forward.... January 23, 2019..
Sometimes it's the little things that can have an affect on you mentally...
I know I was supposed to be dropping the post, Pain Meds Have Sided Effects Too, but since then, I got locked up...again. So what happened? What's going on? Before I get into all of that I have to admit, this hospital stay has been one of the toughest...more mentally and emotionally than anything. Everybody knows that The LupieGirl is bubbly and always positive but this post aint that. Right now, I need a moment to vent and get my feelings off my chest because I almost lost my mind; But God.
Since I was told that I needed a kidney transplant, I thought about all of the freedom from hospitals and "bondage" along with having children and so forth. Boy oh Boy, I guess now, I'm facing the true reality. Since the beginning of the new year, I've been hospitalized twice, both about 4-5 days at a time. That's about 10 days that I've been locked up and it's only the beginning of March. Am I mad about it all? Nah. I just want to be "normal".
I tried to fight it but...
Well, I think that the unthinkable has occurred. I got a cold! You may be thinking, "Brie, it's just a cold! Eat, rest and staying hydrated is key." Yes, it is key but as a Lupie, my body fights a cold much more differently than a healthy person would, for a number of reasons.
Hey you! It's been months since I have gotten here to just think, write and share. I haven't shared a post in so long so I thought that it was only right to pick it back up where I left off. Well I know the question that you may be having is "so what's up with the kidney?!" My kidney is doing great! I've been getting checkups often and so far everything is stable and healthy. And that is what I wanted to touch on this post; my kidney transplant. Now I'm not talking about all the things before a kidney transplant because I've spoken on that. I'm talking about life after a kidney transplant. I honestly thought that everything was going to change and I was going to be worry free. However, I realized it was all hype.
Well, yesterday, March 7, 2017 made 3 months since I received my kidney transplant. I had to drive down to Weston, Florida and meet up with my Transplant Nurse and the physician to check vitals and make sure that the kidney was pumping fine with no increased risk of rejection. I also had to pick up the 6 or 7 different medications that I needed refills on. All vitals came back normal and all I could say was "Lord, thank you." Since the transplant, so much has taken place and so many blessings have come my way. Not running around with Henry all the time has in fact made things way much easier. No more having to take boxes and boxes of dialysis fluid when I travel. I no longer have that tube hanging from my abdomen. However, I have still had moments when I'm down due to the fact that there is a 40% chance that I can get kidney disease again. Everyday I see the scares and bruises that my body has endured, especially within the last year. I don't always ponder on the negative but I don't act like they aren't there. I will say that it is my negatives and my memories of those times that push me the hardest to get better, to succeed and to continue writing sharing the things that I've gone through. I'm on a new list of medications with a few that I will take forever. The LupieGirl grew not only because it's what I wanted to do, it was really because of those who believed in me and wanted to see me grow and God telling me to make everyone aware of this devastating disease that is claiming the lives of many people everyday.
For everyone that has Lupus or has some chronic illness, or know someone suffering from it, pray. Pray for that day when things may change. Stay encouraged and have a team of people that will stand in the gap for you when you have no strength or zeal to pray for yourself. My village and God is who kept me through this entire process. A while ago, I almost lost my mind and gave up. However, my village; family, friends, church members, friends of friends; continuously prayed for me and encouraged me. Outside of Lupus, I dealt with other issues that many people may face. I was slapped with the cold reality that I may not be able to do the one thing that women are blessed to do; have children. All I can say now is BUT GOD! I remember sitting in my room in the dark, crying out, begging for change. Sometimes, I would just cry and say nothing. One thing I will always say is God, thank you. I won't only thank him for all the things he has done for me but for also going through this and living to tell the story. I thank him for this experience, humbling me to see what it's like when people walk out on you, when people take from you, when you constantly pray and it doesn't come on your own time and the very fact that when God comes through, he comes all the way through, when you LEAST expect it! I was supposed to be talking about the different medications that I take right now and the things I can and can't do. However, my heart shifted me in a different direction and I pray that you all stay encouraged and enduring whatever fight it is that you're fighting. Please know, just because I have received a kidney transplant, the fight for me is NOT over. I will still suffer from Lupus for the rest of my life.
So the next day on Thursday, the Physical Therapist arrives and has me up and walking, high as a kite from the pain medications that I'm on.
It's amazing how you can be in your right mind one day and feel so healthy and then the next day, you're weak and trying to understand how to walk steady without wanting to pass out. The body is very special and should always be treated as such.
So, she's giving my progress and states that I need to start doing a little more walking. I say okay, knowing good and well those weren't my intentions. and then the pharmacist comes in to go over the medications that I had to take. Immediately, I get overwhelmed. I thought that once I received the kidney transplant, everything was going to be a great piece of cake. I knew I would have a few medicines to take but THIRTEEN medications! Then three or four of them I will take for the rest of my life. They then pull back the bandage where the incision was I could feel that the staples went from the middle of my right abdomen all the way down to the top part of my pelvic area; About 47 staples! My catheter where I did dialysis was removed (Thank God) and I could see meat; about 8 staples there. I was amazed yet scared. I was scared that maybe the kidney could fall out (DON'T JUDGE ME). The doctors came in on that Friday and said Ms. Salter, you can go home.
Now, I have to say thank God for my stepmom. She really took care of me through my healing process. She was at every appointment and always made sure that I did things in the best interest of my health. Din Din, I have to publicly thank you. I was scared, overwhelmed, and full of emotions and you stood there at every moment making sure that I was okay. When I got that call, you and my Aunt Carol dropped everything to make sure I made it to the hospital on time. I thank you. You both watched my progress, my unstable emotions and you remained by my side. I thank you.
Well, now I am out and it has been 2 months since I have been free and I feel awesome! My white blood cell count decreased a bit and I developed a little cold but all is well. I have been so blessed and this journey has been one of a kind and I am so thankful!
Questions that many of you have asked.
Question 1: Now that you have received a Kidney Transplant, do you still have Kidney Disease?
Answer: I no longer have Kidney Disease
Question 2: Do you still have Lupus?
Answer: Yes. Lupus is a chronic illness. I will have Lupus for the rest of my life.
Question 3: Can you now bare children?
Answer: Yes, I can.
Question 4: Did they remove both kidneys and add the new one?
Answer: No. The 2 bad kidney are still inside. Eventually they will stop working and shrivel up. The new is placed in the front in my right abdomen.
Question 5: How many kidneys did you receive?
Answer: I received one new kidney. You can live a long healthy life with one kidney. However, because they didn't remove the other 2 kidneys, I currently have 3 kidneys.
It has been a while since I last posted and to be honest, I have a legit reason as to why I've been M.I.A. So I'm pretty sure that you know but I, on December 7, 2016 at 7 p.m. I received a kidney transplant. I know that you're probably thinking the same thing like "didn't you just get on dialysis?" Actually, yes and that is what makes my testimony so much sweeter to me. Let me be the one to say to NEVER, I mean NEVER, give up. No matter if it's that job, that place, that promotion, or that degree. God will show up and show out at times that you least expect it; especially if it's meant for you. You know I have to give you the tea of how it all went down.
Well, well, well. I know that I supposedly did an update on what happened in October and in the beginning of November but my mind was every where and that is in fact my fault SO (I had to catch my breath because of this run-ON sentence that I just created), here I am AGAIN. Well, October 25, 2016 was my 6th year Lupiversary. A Lupiversary is the "Anniversary" of the day a Lupie was diagnosed with Lupus. So, yes. It was my 6th year Lupiversary and I was so happy and hopeful, and just...thankful. Those who have been with me these past six years KNOW that it has been a STRU-GGLE! However, those who have been with me these last six years know just how hard I've worked, cried, pouted, and even gave up when it comes to Lupus. On that day I had to really get in my prayer closet and thank God because I began to reminisce on all the things that happened which made me sad, happy, and even angry. Many just don't know. In the last six years, Lupus wasn't the only thing that I was going through. I was going through a really rocky relationship, I miscarried, I experienced a horrific breakup, I suffered from depression, I forgot how to love myself, I was lost on life, I was lost with God, I ended up on Dialysis and my life was spiraling out of control. But God. But God allowed me to bounce back like NEVER before and THAT, is what's important. God allowed me to continue to go on and receive my Bachelor's degree. God allowed me to be happy and genuinely love myself. God allowed me to pick myself up EVERY TIME I fell. God allowed me to be a vessel--a healthy vessel--and tell my story, "LOOKING" as if I have been PRIVILEGED ALL MY LIFE. God allowed me to breathe again when the nurse said I wasn't breathing, God allowed me to take showers when for a month I wasn't allowed to. God allowed me to go on and be able to WORK for a Master's Degree in the same field that I was told would be too "high stressed" for me. BUT GOD! Remember, things happen in our lives for a reason. I always look around at other people and always holler how I want to be "normal" but if I was, The Lupie Girl wouldn't have been born! Lupus may have brought me many lows but she has also brought me many highs. I've met people that I wouldn't have met hadn't I been on this journey. Stay encouraged and stay inspired!
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.