Are you our next Spectacular Spoonie?
Each month we will be featuring a Spectacular Spoonie!
This lucky person will have their picture and story featured on our website and Facebook Page,
and will also receive some goodies from us!!!
Help us spread us awareness and shine some light on this devastating disease.
To submit your story please email the following to
lupuslynnsandhope@gmail.com
Subject "I'm your Spectacular Spoonie":
1. Share your Lupus Journey
2. Your Instagram or Facebook Name
3. A picture you would like us to feature if you are selected
4. Your address so we can send your goodies if you are selected
All submissions must be sent by August 15th.
By submitting your entry, you are giving us permission to publish your picture and story!
Please like our Facebook Page!!!
This lucky person will have their picture and story featured on our website and Facebook Page,
and will also receive some goodies from us!!!
Help us spread us awareness and shine some light on this devastating disease.
To submit your story please email the following to
lupuslynnsandhope@gmail.com
Subject "I'm your Spectacular Spoonie":
1. Share your Lupus Journey
2. Your Instagram or Facebook Name
3. A picture you would like us to feature if you are selected
4. Your address so we can send your goodies if you are selected
All submissions must be sent by August 15th.
By submitting your entry, you are giving us permission to publish your picture and story!
Please like our Facebook Page!!!
July's Spectacular Spoonie!
This month's Spectacular Spoonie is the definition of inspiration! Nina was one of the first one's to join our spoonie penpal program! She was paired with my mom for one round! And, instantly my mom knew she was spectacular! Nina, you are a true fighter and inspire so many people! Please know that you have not only inspired my mom to take her health in her hands and work towards her goals, but you have inspired me as well! We have found your journey so inspiring that we are working towards loosing weight and feeling great!
Keep up the amazing work! You look fabulous! You are not only inspiring us, but everyone around you!
Wishing you many happy and healthy days ahead!
Thank you for being spectacular!
Watch the mail for some goodies!
XOXO
Keep up the amazing work! You look fabulous! You are not only inspiring us, but everyone around you!
Wishing you many happy and healthy days ahead!
Thank you for being spectacular!
Watch the mail for some goodies!
XOXO
Nina's Journey!
I was diagnosed with ITP in February 2005. My SLE dx didn't come until October 2005. I was completely ignorant about lupus, so I didn't do much research about treatments at all. I went to a doctor my gynecologist referred me to and his only way of handling lupus was to pump me full of steroids (as high as 100mg daily). That also helped to keep my platelets high.
By 2010, I had been hospitalized three times and I gained almost 300lbs. My doctor had made a huge medical mistake that almost killed me and resulted in me developing myocarditis. Heart failure at the age of 32 can really kill your hope and spirit. I was in school for filmmaking and I worked with a production company and had a pretty active lifestyle. After the medical malpractice, I had to go on disability and I couldn't work.
It was tough bc I lost everything that I had worked for. What took me 12 yrs to attain, was gone in less than 18 months. But I'm an optimistic fighter. With exercise and healthy eating, I've been able to lose over 200lbs. I started on a new career path and am now a full time actress. It's been 3 yrs since I needed a chemo or steroid treatment and my lupus is under control.
2010 was a hellish year for me, but 2015 has been the year to make up for that. It'll be 10 yrs this October that I've been dx'd with lupus. As scary as it sounds, lupus is the best thing thats ever happened to me!
By 2010, I had been hospitalized three times and I gained almost 300lbs. My doctor had made a huge medical mistake that almost killed me and resulted in me developing myocarditis. Heart failure at the age of 32 can really kill your hope and spirit. I was in school for filmmaking and I worked with a production company and had a pretty active lifestyle. After the medical malpractice, I had to go on disability and I couldn't work.
It was tough bc I lost everything that I had worked for. What took me 12 yrs to attain, was gone in less than 18 months. But I'm an optimistic fighter. With exercise and healthy eating, I've been able to lose over 200lbs. I started on a new career path and am now a full time actress. It's been 3 yrs since I needed a chemo or steroid treatment and my lupus is under control.
2010 was a hellish year for me, but 2015 has been the year to make up for that. It'll be 10 yrs this October that I've been dx'd with lupus. As scary as it sounds, lupus is the best thing thats ever happened to me!
June's Spectacular Spoonie!
This month our Spectacular Spoonie is a ROCK STAR! This lovely lady is just as passionate about spreading awareness as I am! She has made such a difference in her community already! I know we are going to see big things for you! Keep up the amazing work!
Marlo, please know that you have had such a positive impact on my mom and I! Your instagram (@latingrl3) is very inspiring and I look forward to your posts! My mom and I so enjoyed your upbeat email! You are so positive about spreading awareness for this cruel disease! You enthusiasm radiates through everything you do! You have been through so much, and yet are able to face each day with a smile on your face! The fact that you started your own support group speaks volumes girl! You are beyond SPECTACULAR! We are honored to have you as our SPECTACULAR SPOONIE this month!
Thank you girl!
You have goodies coming your way!
Marlo, please know that you have had such a positive impact on my mom and I! Your instagram (@latingrl3) is very inspiring and I look forward to your posts! My mom and I so enjoyed your upbeat email! You are so positive about spreading awareness for this cruel disease! You enthusiasm radiates through everything you do! You have been through so much, and yet are able to face each day with a smile on your face! The fact that you started your own support group speaks volumes girl! You are beyond SPECTACULAR! We are honored to have you as our SPECTACULAR SPOONIE this month!
Thank you girl!
You have goodies coming your way!
Marlo's Journey!
I was always a sick baby and child. I even missed my first semester of high school because of joint pain, fatigue and fever. Dr's never knew what was wrong with me. They first said Valley Fever, then started to think it was psychological. When I turned 30 is when I really got sick. I was bedridden for 3 months. Couldnt walk, use my hands, or touch my children. All the tests were coming back negative. At that time, a family member was diagnosed with Lupus, which made the Dr start to look into that. He finally diagnosed me with lupus saying that 12% of women test negative when they indeed have it. He said I had all the symptoms, so he went ahead and diagnosed me. A few years later, while in remission, I finally tested positive for Lupus.
I did pretty good for about 7 years. I took advantage of life, because I thought it was about to be taken from me. I played on 2 soccer teams, hiked on the weekends with my children, marched in my daughter's parades with her and her dance team, and was even training for a marathon.
In 2009, while training for a marathon, I caught pneumonia and Lupus decided to show it's ugly head again. Since 2009, all the drugs the Dr's would give me, I would get the serious but rare side effects, and end up in the hospital. I was averaging being admitted in the hospital, every 2-4 months. I started to feel alone and depressed. It got to the point where they couldnt give me anything, so I was recommended to try a Lupus Trial drug.
There were no support groups in my area, so I turned to online Lupus support groups. I swore when I started to feel better, I was going to start a support group in my hometown. I started the Embody Lupus Trial Program almost 2 years ago and it has helped me a great deal! It helped me so much that last September, I started my own support group and I am now helping others with autoimmune diseases. I do not want anyone to ever feel alone like I did! I am also big on spreading awareness. This year I received 5 proclamations, proclaiming May as Lupus Awareness Month, in my hometown and surrounding cities. I am determined to put Lupus on the map and get the funding for a cure.
I did pretty good for about 7 years. I took advantage of life, because I thought it was about to be taken from me. I played on 2 soccer teams, hiked on the weekends with my children, marched in my daughter's parades with her and her dance team, and was even training for a marathon.
In 2009, while training for a marathon, I caught pneumonia and Lupus decided to show it's ugly head again. Since 2009, all the drugs the Dr's would give me, I would get the serious but rare side effects, and end up in the hospital. I was averaging being admitted in the hospital, every 2-4 months. I started to feel alone and depressed. It got to the point where they couldnt give me anything, so I was recommended to try a Lupus Trial drug.
There were no support groups in my area, so I turned to online Lupus support groups. I swore when I started to feel better, I was going to start a support group in my hometown. I started the Embody Lupus Trial Program almost 2 years ago and it has helped me a great deal! It helped me so much that last September, I started my own support group and I am now helping others with autoimmune diseases. I do not want anyone to ever feel alone like I did! I am also big on spreading awareness. This year I received 5 proclamations, proclaiming May as Lupus Awareness Month, in my hometown and surrounding cities. I am determined to put Lupus on the map and get the funding for a cure.
May's Spectacular Spoonie!
This month two very courageous woman shared their stories with us! When I read each story tears instantly came to my eyes. I passed them along to my mom and she had the same reaction! We knew that it would be impossible to choose just one Spectacular Spoonie. So in honor of Lupus Awareness Month, we have decided to honor two very spectacular spoonies this month!
Jennifer, you are an incredibly strong spoonie! I admire you strength and determination as an independent woman. I know that sharing your story wasn't the easiest task, but please know that you have touched my mom and I in ways you will never know! Your beautiful children are living proof that you are a true Lupus Warrior! Keep that beautiful smile on that face always! And, please know that you will always have a special place in our hearts! Keep up the fight girl! You got this!
Angelique, your story hit me hard! My mom has also suffered from kidney failure and had to be put on dialysis. I know that dialysis treatments are very tough and unpleasant. I admire your strength and courage. I can relate to the happy memories of seeing urine flow! When my mom's kidneys began to function we had tears of happiness for that pretty yellow pee! I know that it took some time to gather your thoughts before sending them to us, and I know it couldn't have been easy! But, I want to thank you! Your story had such an impact on us! I am so very sorry for the loss of your Aunt. You are a firecracker girl! You are in our thoughts daily! Never give up that fight! You go girl!
Please check out their stories below and show them some love!
Thanks ladies, you have goodies coming your way!
Jennifer, you are an incredibly strong spoonie! I admire you strength and determination as an independent woman. I know that sharing your story wasn't the easiest task, but please know that you have touched my mom and I in ways you will never know! Your beautiful children are living proof that you are a true Lupus Warrior! Keep that beautiful smile on that face always! And, please know that you will always have a special place in our hearts! Keep up the fight girl! You got this!
Angelique, your story hit me hard! My mom has also suffered from kidney failure and had to be put on dialysis. I know that dialysis treatments are very tough and unpleasant. I admire your strength and courage. I can relate to the happy memories of seeing urine flow! When my mom's kidneys began to function we had tears of happiness for that pretty yellow pee! I know that it took some time to gather your thoughts before sending them to us, and I know it couldn't have been easy! But, I want to thank you! Your story had such an impact on us! I am so very sorry for the loss of your Aunt. You are a firecracker girl! You are in our thoughts daily! Never give up that fight! You go girl!
Please check out their stories below and show them some love!
Thanks ladies, you have goodies coming your way!
Jen's Journey!
In 2006 everything was normal. I was your average, busy, active wife and mom. I was 100% active in the lives of our 2 children and my marriage was thriving. Life was wonderful. Then on Mothers Day 2006 I woke up deaf. Imagine waking up and seeing the people you love talk to you, and not be able to hear a word. It was frightening, to say the least. I spent the next year in and out of hospitals, doctors offices and even received hearing aids (they didn't help). Every doctor was baffled. They had no idea. I started to regain partial hearing in my left year, still completely deaf in my right ear. I just kept moving forward. I learned to read lips and everything went back to normal. In 2008 we were blessed with identical twin girls. It should have been such a happy time, but I was floored with severe anxiety and depression. I started seeing a psychiatrist and was told it was post partium and it would pass. I was so tired all the time, which we all thought it was because I had 2 new babies, a 5 year old and a 9 year old, but it didn't matter how much I slept or rested, I was always exhausted. The next year and a half was pretty "normal" but I still knew something was wrong. In 2010 I started blacking out. Sitting, standing, it didn't matter, I would just fall out. I am diagnosed with absent seizures and put on lamectial XR for the seizures and was seeing my neurologist every other week. He agreed with me, that something wasn't right, we just couldn't figure out what was wrong. Soon after that is when the memory loss and confusion started. I had several stroke and lost my speech on several different occasions. I remember waking up one night and I didn't know where I was. I didn't know who my twin daughters were. It was awful. In 2011 we moved and things got worse, fast. Everyday I was in so much pain and so tired. My (now ex) husband stopped being supportive.When I would tell him that i felt like I had the flu and I couldn't move, he would laugh and say "you'll say anything to keep laying in bed'. He didn't understand, nobody understood. He thought I was lazy. He had me thinking that it was all in my head and that I was crazy. I started to believe him. I kept all of my new symptoms to myself and put on a front for everyone. I lived like this for a year. In 2012 I found out that my husband had been having an affair. He said dealing with me and all of my "fake illnesses" was too much. He left. I finally found my amazing doctor and he was not going to give up until we found the problem. In July of 2014 I was diagnosed with systemic lupus erythematosus, aka LUPUS! Since that diagnosis I have been diagnosed with heart disease, kidney disease, fibromyalgia, chronic fatigue, chronic migraines...etc... My doctor says that it all stems from the lupus. He even thinks that my hearing loss was caused by the lupus.
My life is a constant battle against myself. I am confused and in a fog 90% of the time. I have 2-3 ER visits a month, some where I have to be admitted. I take 16 pills everyday and get 3 injections twice a month. My life now revolves around doctors and medications. I don't make plans, because I never know how I will feel. I have to get help with my kids and normal things that I should not need help with. I have children who fully rely on me, so I will NOT let lupus win. I will keep fighting and spreading awareness of this awful disease,
My life is a constant battle against myself. I am confused and in a fog 90% of the time. I have 2-3 ER visits a month, some where I have to be admitted. I take 16 pills everyday and get 3 injections twice a month. My life now revolves around doctors and medications. I don't make plans, because I never know how I will feel. I have to get help with my kids and normal things that I should not need help with. I have children who fully rely on me, so I will NOT let lupus win. I will keep fighting and spreading awareness of this awful disease,
Angelique's Journey
My Lupus Story
How I found out I had lupus.
Everyone has a story, but no one will benefit from it unless you tell it…
Sometimes I look back and wonder was lupus rearing its ugly head and I didn't know it. I can think back when I would walk to and from school in the brutal winters while living in Detroit. I HATED IT!!! My body would hurt, especially feeling pain in my back. I would always say, “I can't wait to get grown so I can move somewhere hot all the time.” Well I moved to Georgia as an adult with my daughter. I guess things were ok, I guess. HOTLANTA is what Atlanta lived up to be. I couldn't stand to be out in the heat too long. No outside actives for me. I remember when I started working nights for the post office. I would get home from a hard working eight hours and once Jaz was off to school I would sleep until the minute she got home. Most days I would just lay in bed until it was time for work. My friends would say I was being lazy. Seem like I rarely had time to spend with her cause I was always in bed. Tired, irritable, maybe even depressed. Not to mention the constant migraines. I was always calling in sick to work just to “get caught up on rest.” The winter and spring months were the worse. I would stay at the doctors trying to get some type of pain medication just to function. You would have thought with the repeated visits and blood tests that they would have known that something wasn't right. To save money and have “better insurance” I switched companies during open season. I still believe to this day it was the best decision I could have made. It was during my second visit after blood work came back that my doctor told me she thought I might have the on set of lupus. !?!? Back up to the first visit for a minute. While examining me and getting a rundown of my family’s medical history she looked at my face and said, “You look to have signs of lupus.” This was just by looking at my face. She said I had the butterfly rash. Now mind you my aunt had been battling lupus for over 20 years. Oh getting back to the second doctors visit. (Lupus Fog). I had to yet again give more blood to have more test completed. While waiting for my next visit to my doctor I had taken nearly two weeks off work. Not because I was told I might have lupus but I thought I had the flu. I was really weak and was in bed most of the time. Over the counter meds and plenty of fluids was what I thought I needed. My urine was so dark it nearly looked like watered down diet Coke, yuck! Well I tried to fix that too. Plenty of water and cranberry juice. One day I started throwing up. Everything I ate would come back up within twenty minutes. I kept having the sensation of having to urinate but nothing would ever come out. I was like this for two days until I went to emergency one night thinking I was headed to work. I may have been in a delusional state because I asked my oldest daughter to go with me and ended up at a hospital nearly 25 miles away from my home passing two other hospitals along the way. At about 10pm I checked in the ER and was admitted about 2am. I think it was around 11am that following morning, after blood work and no luck on getting a sample of my urine, when two doctors came in and told me that I was at stage 5 kidney failure and would have to immediately go on dialysis. Four days later I was diagnosed with Lupus SLE. At that moment my world ended, so I thought. After being on dialysis for nearly five months my kidney function went back to normal. To see my urine flow was the best thing ever. So you see that's how I found out I had lupus. Recently I lost my aunt to lupus. I have been taking it extremely hard because I know her fight. But through it all I continue to fight this fight and spread awareness every chance I get.
"I think if you do something and it turns out pretty good, then you should go do something else wonderful, not dwell on it for too long. Just figure out what’s next." -Steve Jobs
How I found out I had lupus.
Everyone has a story, but no one will benefit from it unless you tell it…
Sometimes I look back and wonder was lupus rearing its ugly head and I didn't know it. I can think back when I would walk to and from school in the brutal winters while living in Detroit. I HATED IT!!! My body would hurt, especially feeling pain in my back. I would always say, “I can't wait to get grown so I can move somewhere hot all the time.” Well I moved to Georgia as an adult with my daughter. I guess things were ok, I guess. HOTLANTA is what Atlanta lived up to be. I couldn't stand to be out in the heat too long. No outside actives for me. I remember when I started working nights for the post office. I would get home from a hard working eight hours and once Jaz was off to school I would sleep until the minute she got home. Most days I would just lay in bed until it was time for work. My friends would say I was being lazy. Seem like I rarely had time to spend with her cause I was always in bed. Tired, irritable, maybe even depressed. Not to mention the constant migraines. I was always calling in sick to work just to “get caught up on rest.” The winter and spring months were the worse. I would stay at the doctors trying to get some type of pain medication just to function. You would have thought with the repeated visits and blood tests that they would have known that something wasn't right. To save money and have “better insurance” I switched companies during open season. I still believe to this day it was the best decision I could have made. It was during my second visit after blood work came back that my doctor told me she thought I might have the on set of lupus. !?!? Back up to the first visit for a minute. While examining me and getting a rundown of my family’s medical history she looked at my face and said, “You look to have signs of lupus.” This was just by looking at my face. She said I had the butterfly rash. Now mind you my aunt had been battling lupus for over 20 years. Oh getting back to the second doctors visit. (Lupus Fog). I had to yet again give more blood to have more test completed. While waiting for my next visit to my doctor I had taken nearly two weeks off work. Not because I was told I might have lupus but I thought I had the flu. I was really weak and was in bed most of the time. Over the counter meds and plenty of fluids was what I thought I needed. My urine was so dark it nearly looked like watered down diet Coke, yuck! Well I tried to fix that too. Plenty of water and cranberry juice. One day I started throwing up. Everything I ate would come back up within twenty minutes. I kept having the sensation of having to urinate but nothing would ever come out. I was like this for two days until I went to emergency one night thinking I was headed to work. I may have been in a delusional state because I asked my oldest daughter to go with me and ended up at a hospital nearly 25 miles away from my home passing two other hospitals along the way. At about 10pm I checked in the ER and was admitted about 2am. I think it was around 11am that following morning, after blood work and no luck on getting a sample of my urine, when two doctors came in and told me that I was at stage 5 kidney failure and would have to immediately go on dialysis. Four days later I was diagnosed with Lupus SLE. At that moment my world ended, so I thought. After being on dialysis for nearly five months my kidney function went back to normal. To see my urine flow was the best thing ever. So you see that's how I found out I had lupus. Recently I lost my aunt to lupus. I have been taking it extremely hard because I know her fight. But through it all I continue to fight this fight and spread awareness every chance I get.
"I think if you do something and it turns out pretty good, then you should go do something else wonderful, not dwell on it for too long. Just figure out what’s next." -Steve Jobs
