28 Below Foundation

The average age at which a child is diagnosed with lupus is 12 years old.

Do you know of a child or a young person who has lupus? Contact Joyce@28below.org for more information on how to help them and you understand about more.

Everyone goes though times where we feel like we are misunderstood. One thing that really bothers me is when people that don't know me at all, or anything or very little about what I've been though assumes things about me, or make up silly rumors. Everyone always has more going on than what anyone knows, so dont assume things, ask me whats going on. this is a monoluge i wrote when i felt i was being misunderstood and judged.

Lupus is an auto immune disease in which the body attacks itself. It can effect different organs, including your heart and lungs. I was diagnosed with lupus at the age of 14, on march 12, 2009.

A slacker? Your calling me a slacker because I haven't been in school for three days. I understand that your a spoiled brat that hasn't haven't had any significant life changing events and you think you know everything, but you don't know me, and you don't know what I've been though. You haven't spent three weeks in the hospital, and nine days in icu fighting for your life. You haven't had a blood clot go through your heart and afterwards be told that your a miracle. You haven't had bleeding lungs. You haven't had six months of chemo treatment. You don't take 15 different medicines a day. You don't go see a bunch of different doctors every month. You don't feel three times worse, and it doesn't last twice as long when you get sick, because you have a suppressed immune system. So before you call me a slacker, or make up rumors that I have some embarrassing contagious virus, know what your talking about, because you don't know me and you don't know what ivd been though.

Anyone who knows me at all, knows I love theatre. It's been my passion for almost four years and it always will be. I walk into the drama room and no matter what's going on, I automatically feel better because that room has so much positive energy. The people I perform shows with are like my second family, because we spend so much time together, and we share the same passion. I love being back stage and acting. It takes a lot of time and effort to put on a show, but no one can understand the feeling it gives me. When I'm on stage, or working on a show, either in rehearsals or during a show I forget the world, and nothing else matters. For those few hours I become a different person and I live in a different world. Its my escape from real life and I absolutely love everything about theatre.

When I have something on my mind, or I’m having a bad day, or going through a rough time, I write. I write songs, I write letters to myself and date them, I write monologues. I also write fiction stories. I like it because I can revisit what I wrote and remember what I was going through. I love writing, it’s my outlet to surviving this crazy world.

This is fiction monologue I wrote. And I actually preformed it in drama as well:

The Second Hello

Ever Sense the day we met, its been a dream come true. Everything has been amazing. The cute nicknames. The corny inside jokes. The slow dancing in my living room and no matter how bad of a mood I’m in, you can always make me smile. You are the one person that seems to know me better than I know myself. You are always there for me and I know that I can trust you with anything. Your not just my boy friend, your my best friend and that won’t change. The way I feel about you wont ever change. But It’s been 2 weeks sense you left me. 2 weeks sense that horrible rainy night when you took that curve too hard and you lost control and now I’m here. This wasn’t part of our plan. We still have so much to do together. I know you probably think that this is our last goodbye and your right, but I know I will see you again someday so its not our last hello.

Lets talk about FlutterBy the 28 Below butterfly.  This is a very special butterfly that is going to try to make her way from the east coast to the west coast and back again.  This butterfly is called a geocache cachekin.  If you do not know what geocaching is, it's, well, the biggest hide-n-seek game there is!  The world is our game board.  

FlutterBy has been placed in a cache at the request of 28 Below and now is free!  Hopefully she'll find her way to the hands of people with lupus who will share their story on the website.  And pictures.  

So if you happen to see FlutterBy out there, please say hello.

28 Below.org

If not now, then when?With October winding down in just a few days, that leaves only two more months of 2011!  Which has been a big year for us at 28 Below.  In May, we held our very first Laps for Lupus walk.  We have had set ups at craft fairs, Community Bazaars, and expos galore!  We have a website, we're on Facebook, just started Twittering and have just signed up for a YouTube account.  So what's left to do in 2012?  EVERYTHING!

We feel like 2011 has been the year of 'learning to walk'.  Just like a baby taking those first wobbly steps.  But 2012 is going to be our toddler years, where it's a full run!  The support meetings are on the books up through Spring 2012 (the furthest they book rooms), we are already looking at where 28 Below will be set up AND Laps for Lupus 2012 is in the early stages to development.  There are so many things to be happy about and look forward to in the new year.

Our main focus is going to be volunteers.  Right now we have a few, but honestly, we can not do it all ourselves.  We need people to help split the work.  To be able to work a table at t bazaar.  To donate time to this wonderful cause.  There is such a need to Lupus Awareness- in every age- but especially in children, teens and young adults.  9 out of 10 people we speak with say "I didn't even know teens could get it."  Most people think it's an 'old person' disease and that's just not true.  Anybody can get lupus. Does not matter gender, race or age.  Anybody.  Period.

So as 2011 begins to come to a close.  As you enjoy your holidays with family and love ones.  As you celebrate new beginnings.  I challenge you to ask on your Facebook profile or to Tweet "Is anybody I know affected by lupus?  Either have or know someone who does?"  See what replies you get.

And at the end of the day, I hope you realize that volunteering your time is important through out the whole year.  It makes you feel good and it sets a good example.

Think about volunteering with 28 Below in 2012.  Cause I ask, "If not now, then when?"

I have spent the past 3 weekends working for the foundation and I am tried BUT SOOOOO thankful it has been a great run! After 3 weekends of spreading Lupus Awareness,my passion has been renewed and I am know I am doing what I was put here to do.

When I get to share a pamphlet about lupus or meet someone who has lupus or someone who knows someone who has lupus I light up like a kid in a candy store! I should have keep track of the peopleI have meet over the past month who knows someone with lupus but I didn't think about it until now, however since Monday I have meet with 4 people who knows or knew someone with lupus. The nurse who took care of Tori PICU mother has lupus and the EMT on the ambulance that transported her (us) to Columbia has a sister in law who has lupus.

Don't worry I am not stopping anytime soon because there is so much work out there to be done when it comes to lupus awareness so although we don't have any events plan for November I will be thinking and brainstorming on ideas and doing some behind the scenes work planning for the new year ahead of us!

Dry run.  Yup, not a single soul showed up.  Will, that's a lie, three 28 Below Board Members and two volunteers where there.  The room was awesome, and we had some great goodie bags to give out as a "Thanks so much for coming!", our hour was planned out to a 'T'.....and even some totally groovy artwork.  But alas, nobody showed up to be supported.  But it wasn't a total waste of time.  28 Below held a meeting to discuss the next meeting, and then we continued to IHOP to drown our sadness in pancakes....LOL.  But it's all good.  We knew that there was a chance that nobody would show up.  And we think we know where we went wrong.

For November, the word is Publicity!  In every way we can think of!  Newspaper, internet, radio stations, and every other way.  We are already planning and writing our press release.  In November I just KNOW we'll have people show up.  Even if it's JUST one person.  We know that there are peopler in the area that need the support, we just did a bad job getting the word out.

Anyhow, that's all about our first support meeting....a not quite total bust. 

Thanks for reading,

Maya

28 Below was at our local Mall on Friday, July 29, 2011 handing out flyers, pamlets, and taking donations.  It went really well! We are still learning the ins and outs of setting up a table and what we need and don't need.  I just know we'll get there soon.  We learn a little bit more everytime we go to a trade show.  We look around at all the tables and say, "You know, that's a really good idea" or "Man, we should get one of those".  I guess that's what it's all about, right?  Learning as we go.  And we are learning.  Of course, our table doesn't look let someone's table who is selling things for profit.  We have to be careful what we buy, since we don't hae a huge trade show budget.  And everything on our table is either free, or for donations.  But we are learning, and our tables are getting better and better. 

Well, that's our story of the Friday Wellness Fair.  Be on the look out for more adventures soon!! 

Happy DAY! ~~Maya~~

Hello out there in cyber world,over the next few weeks, you'll notice a change happening to the 28 Below website.  But don't freak- it's all for the better.  Think of it as a facelift.  Some minor changes, a lot of updating, and a freash new look all around. 

Please take a moment to look around.  And please pass on this site to everybody you know!! 

Thanks so much for your understanding.

Lastest Lupie story in the Shreve house.....Tori went out of town last weekend to a drama club competition. When I picked her up Sunday late afternoon I was impressed at how she seem to feel. She seem to have the typical tiredness any teenager who was sleep deprived would have but she didn’t have the “lupie” wiped out, dragging her voice and her behind tiredness about her. I was really happy to know she seem to be continuing to manage her body well considering the lack of sleep, the stress of traveling, rooming with 3 other girls, competition, etc. As we were leaving the school I noticed her nose and cheeks were lightly rosy or dark pink. I said “Tori, it looks like you got some sun.” She said “yeah, we went to the park yesterday.” My response was (as I am shaking my finger at her) “you know better, you should have worn sunscreen.”

Monday morning she had the typical lupie, dragging tiredness about her and asked if she could stay home from school. I said yes so she could allow her body to rest since the demands of the trip seems too have caught up with her.

Tuesday morning she wasn’t any better so she stayed home again. Tuesday afternoon, she was once again, not any better so I started racking my brain trying to figure out what is going on. Then it hits me, her iron must be low because Flo came for a visit last week so I tell her to take some iron. She also said she was overwhelmed with makeup work and wanted to catch up before going back to class. I contacted her intermittent homebound teacher (which also happens to be my mother-in-law) and made arrangements for Tori to go to her house today while I was at work.

As planned this morning we are heading to Grandma’s house for Tori to do and Tori casually says, “ I wonder if the sun I got Saturday is the cause of all of this?” AND THE LIGHT BULB TURNS ON!!! I am like OH MY GOSH, THAT’S IT!!!

Ugh, the life of a lupie and her momma who can’t seem to keep all of this in her head! There is just sooo much to remember that affects her or could cause a flare. Jeff had a great idea…to make a list of all the things that cause her to have these “flares”.

Let the list taking begin!

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don't just get up. You have to crack open your eyes, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don't, you can't take your medicine, and if you don't take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn't want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can't do it all. I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can't forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good for understanding Lupus, but anyone dealing with any disability or illness.

Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

By now most of you are probably familiar with my daughter’s lupus story but what I haven’t shared with you is how I learned to cope and deal with Tori’s lupus, list of doctors, lab work after lab work, etc. I learned to adjust to our new normal life.

I have a beautiful relationship with an amazing lady who is wise beyond words and I admire her dearly. She has been my rock and guiding light sent by God many ways and many times over. For example, when my mother’s health deteriorated to the point where she had to go in a nursing home, this amazing lady was there reassuring me I was making the right choice, offering much needed advice and being patient with me as I vented and turn to her for help. My mother passed away and it truly meant the world to me that she came to the funeral even though she had to drive an hour and half to come and support me.

When Tori became ill just like before, this amazing women was there to help and assist in any way possible. When we were waiting for the lab work results to pretty much confirm Tori had lupus she and I researched rheumatologist, clinics, hospitals, etc. and narrowed it down to two doctors and with her help I selected Tori’s rheumatologist, which is one of the best choices I ever made! Tori’s rheumatologist has saved her live at least twice. After every doctor’s visit, test or change in Tori’s condition, I would call this amazing God sent woman as quickly as possible to update her on Tori and to listen intently for her guidance and advice. The one thing she always said to me was this is your new normal. My new normal, I thought, is there is such a thing as normal after being diagnosed with lupus and all lupus comes with? Will life feel normal again after almost losing my child to a disease that has been around for hundreds of years but few people know little about? I can say after nearly two years of doctor’s appointments, hospital stays, chemo treatments, weekly lab work, we have adjusted quite well  to our new normal. Sometimes I have to do my best not to panic when my daughter tells me about a new symptom or I realize someone who has been in direct contact with Tori is sick with something contagious but life has (for the most part) resumed to our new normal.

Now the question Do I want our old normal back? Well that depends. Yes, I would love to have my healthy girl back and not have her endure being stuck with needles on a weekly basis to have blood drawn or worry about her getting cut and bleeding out and I would prefer not have to worry about her getting sick from every little bug floating through the air. If that was all the new normal gave us then I would definitely want our old normal back but that is not all that has changed in our lives.

Our new normal life with lupus has given us so many blessing and has allowed some of the most amazing people who are extremely dedicated to lupus treatments and finding a cure in our lives. Our life with lupus has allowed care from some of the most amazing nurses and caring people to touch our hearts. Our new normal life with lupus has given me the most beautiful relationship with my in-laws which I am so thrilled to have! Our new life with lupus has allowed me to see God’s work first hand several times over…and yes it still gives me chill bumps to think and share the story of His work. There are so many ways our new normal life has positively impacted our lives. If it weren’t for our new normal, I would still be working on trying to advance my career in the accounting industry instead of working on building my foundation, still spending money recklessly on clothing & material things I thought I couldn’t live without instead of conserving money and finding ways to save. I would still be spending my down time searching for the best deals to all the country music concerts and planning road trips to attend them instead of networking with others who have lupus and supporting them in any way possible. If lupus was not a part of our lives I still be wondering why I am here on earth and what God has plan for me. Instead, now with my new normal life I have a clear vision of what His plan is and what my true passion and purpose is in life. I think you all would agree my time, money and energy is better spend now days.

Although adjusting to our new normal was very difficult and depressing for a while, I wouldn’t go back to the old normal. I am very content and happy with our new normal and I am pleased we have found it. For those still trying to adjust to life with lupus, I hope and pray you will find the transition to your new normal to be smooth and less time consuming than mine took. I cannot say the adjusting period to your new normal will be easy but once you have achieved it, I pray you will be able to look back and be thankful for where you are in your life with lupus.

Smiles, Hugs & Prayers,

Joyce Shreve