Living With the Pain of Lupus
Last updated: April 2023
Hi, my name is Jenn and I’m reaching out for help for my family. We are normally not the ones to ask for any help. We always want to be the ones helping others we try and do it all. We are learning sometimes you need a helping hand! My husband and I have 4 kids together and have been married for 10 years come December. We live in an amazing community! We are building a hopeful future here! My kids and husband are my life! They hold me together through everything! I want to fight this for them but, first and foremost for myself! All my husband's hard work is incredible and I am forever grateful I have him by my side! I love the life we have built together. Everyone needs help now and then!
Juggling life with an invisible disease
Being a mom, being there for these beautiful humans I’ve created that’s my end goal in life! I’m that mom that’s there cheering in their corner always. I’m that mom that is always doing that extra thing. I’m that mom that is always showing up and I’m that mom that’s gonna be there no matter what life my throws our way!
I live with the burden of an invisible disease… The comment I hear the most is “you don’t look sick you look great!” But inside my body is screaming! Trust me when I say I try and hold it together the best I can! I know there are many out there that can relate! Just know my thoughts are with you!
The growing costs of care
About five years ago, I got diagnosed with lupus and kidney disease. For the most part we have been able to manage everything through the past 5 years with support from friends and family to whom we are so grateful for. Throughout the past years I’ve been diagnosed with a long list of other medical issues some of them include severe anemia and fibromyalgia along with my lupus! My health conditions have now taken a little curve. Does anyone have suggestions for where to get help with traveling expenses and medical bills?
Last year in May, I started to bruise didn’t know why. I just happened to wake up covered in bruises, and I started feeling really tired all the time. So I went to the doctor got diagnosed with chronic ITP (we still don’t know why this is happening lots of opinions on where it could be coming from.) My platelets are extremely low and they say I can’t live like that because it puts me at risk for infections. I can no longer have infusions as my body just eats the platelets within minutes, this is how they explained it to me. I have been hospitalized multiple times since then.
"My body is yelling at me"
We have been back and forth to Mayo and traveling expenses have increased. With taking time off work and days that I’m unwell and unable to do much everything has and is adding up. Although on the outside I look OK, inside, my body is yelling at me. I'm in constant pain and nauseous most of the day! We have seen a lot of doctors and tried 8 different medications treatments which include chemo and none of them worked! Just when we think the medicine is working, my body says "Nope," and my numbers drop again! I’ve gone through an abundance of testing and get my blood drawn almost every week. We are now being referred to the University of Minnesota to see if they can help.
With the future being uncertain, we know there are already bills coming and we are reaching out for help and prayers! They are saying they haven’t seen this happen to someone in 30 years! I am 31 years old. The very last option is a bone marrow transplant, and which has too many risk factors involved and is a long process but if need be, we will do it. At this point, we just want to look into as many possible options as my body and mind can tolerate.
I will keep fighting
I’m a trooper I will keep fighting for myself and my family. I know everyone is going through something in life, and prayers all around! My life is on this journey at the moment, and we are determined to get through it! My family is my rock they go through everything with me every step of the way! My husband and kids are my biggest fans! My family and friends lift me up everyday! I’m blessed to have the caring and loving mom and dad I have they have done so much for us, but even they too, are limited. Thank you for your time!
My lupus diagnosis story
Here is my story about Lupus from the beginning. Life can change in the matter of seconds, minutes, hours, or even days, weeks months. Our life changed exactly 5 year ago. I went from working full time and doing everyday things with my family to not being able to move really at all with out help. It all started with two little red bumps on my finger that wouldn’t go away. I remember it all like it was just yesterday! I had asked myself at the time when I saw them “were those there yesterday?!” Days passed and they still didn’t go away! I remember telling my husband about the bumps on my fingers and he said well make a doctors appointment it’s probably nothing. He said you over think things too much (hahahah this is true) So I made a doctors appointment. Had to wait another week to see the doctor. Finally I went and they did some tests. Never in my life did I think this would be happening!
I remember for a couple weeks I felt as if I was living in a dream! My body felt as if it was shutting down on me! I was scared and worried! All I could think about was my kids, my husband, and my dog! The doctors kept running tests to confirm what exactly I had! I just couldn’t wrap my head around any of it! I didn’t understand anything. I wanted to go back to when it was just no bumps and I was OK! As days began to pass my hands and knees felt like they were throwing in the towel they were inflamed horribly I couldn’t do anything by myself really.
Managing the emotional pain and stress
My mom came and helped there was a point where she had to help me walk and lift me up basically carry me a little! I felt hopeless! My mom told me I have to keep pushing through it! I felt my world closing in on me! The hardest part for me was to watch my husband,my children, my family, and my friends watch me go through all of this. I couldn’t and still can’t imagine how hard it is for them and on them! But in-spite of everything I was going through all the changes in my life my family and close friends really showed me support! My husband stood by my side and still is and is amazing! My child are amazing and so understanding! They are so kind and loving! When I heard the doctors tell me “you have lupus and kidney disease.” At first I didn’t know what it all meant! Then they went on to tell me that my lupus is attacking my kidneys, causing my kidney to basically not function right.
Well my mind was racing and I was panicking. "I'm gonna die," is all I could think, which was so scary! I knew nothing about any of this stuff. I went through so much emotional pain and stress I didn’t know what was gonna happen! I was scared! All I could think about was my family and what my husband was thinking and is everything going to be ok!?!? I prayed every second I had! Everything started going down hill after they told me what I had! My symptoms increased so fast each day.
Side effects from medications
The medicine they put me on to start with had me looking so different! Which caused me to be depressed and all around miserable! I gained weight and didn’t recognize myself! One hard thing was my hair fell out. I had hair almost to my butt and it all started falling out when I got sick. I remember the doctors asking me so many questions and telling me things that I didn’t want to think about nor have! It was like I was in a haze! I couldn’t wrap my head around any of this it just felt as if I was on auto pilot. I was confused and couldn’t understand why any of this was happening. I swelled up like a balloon for a while my body was retaining water horribly!
My support system keeps me strong
I remember before I found out I had lupus for sure, my hands wouldn’t function right but I was determined to do my kids hair and get them ready. My kids are so strong they inspired me to keep moving forward and keep faith even though I was losing it! How hard it has been on my kids and my husband to go through this with me! I am all around blessed to have so much love and support. My husband is truly my soul mate he managed and still manages to be my knight in shinning armor! It was a hard first couple months like really hard on not only me but my family we had to figure out a whole new lifestyle together!
Pregnancy and lupus
My lupus makes me tired like all the time. I can’t be in the sun too much and if I am, I have to make sure I wear a lot of sun screen or clothes that will provide protection from the sun... hats are good! While I was going through all this lupus stuff I found out I needed to have my ovary taken out. Mind you, I already had one taken out, not long before I had found out about lupus and now I needed my other one out! So we were waiting for me to go to surgery and my doctor came in and said, "did they tell you?" I said, "tell me what?" She said, "You're pregnant!" I will never forget the look on Joeys face when she said that. He was sitting right in front of me! I was speechless at first then came into realization! They stopped the surgery and kept me over night to make sure everything was OK the next morning they confirmed I was 5 weeks pregnant, but they couldn’t save it because it was in my tubes! We were devastated! I never really talk about it too much! It was insanely hard! I’m no longer able to have babies! And that was harder on me then being told I have lupus! I still think about that day and how much pain I have gone through but I’m stronger because of everything! (and side note, also going through menopause now which is not fun. So many hot flashes all the time!!!)
My constant battle
Lupus is no joke... people don’t understand it sometimes! We may look ok on the outside but really we are not! And everyday it’s something different that I experience! Everyday I don’t know what my body will decide it wants to do. One day I lose a lot of hair and then next I don’t. One day I’m laughing and running around and then next I’m throwing up. One day my skin is good and the next it can be full of rashes. Some days the fatigue is so unbearable that to just brush my teeth or even shower is like running a marathon. I struggle daily with forcing myself to get up and move forward each day.
Most people don’t realize just what people are battling each day with lupus. We may look just fine on the outside but we are crumbling away on the inside. It seems like no one understands unless they are going through it too. So everything is a new way of living for me I’ve had to watch what I eat and drink and watch what soap and deodorant I use. I went from not paying attention to really any labels, to having to watch what things have in them that may cause my lupus to flare. It’s been a learning experience for not only me but my family has been through it all with me and so supportive! Being diagnosed with lupus and kidney disease has definitely opened my eyes to enjoy the little things u never know when life will change for you! You never know what battles people are fighting so be kind always!
Which resource do you think is most urgently needed in the lupus community?
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