Up you go......

You know there are times when I think people forget that you did not just wake up today and scream I am sick today and forever from here on out (I picture stomping one foot with my arms crossed in front of my chest)!!!!!! They forget that this was not a choice we made ourselves. This is not the life we wanted for our loved ones.....we wanted more and it is ok to be disappointed. My beautiful friend Briney made the most insightful comment to me the other day................LUPUS SUCKS!!!!! Oh and it does!

Today I woke up and it was the first day the world was spinning on its normal feet. Everyone woke up, took the ragamuffins to school and punched the time clock. It was also the first day I was able to contact an actual person involved in my firing case. I know Tim and I knew it was true but there was a little piece in our hearts that believed this was all a silly mistake! This was not a mistake, my insurance ended last Friday and I was not informed about any off it. That is the most frustrating part. If there was a "misunderstanding" between two individuals regarding my case, why did they not just call me? I'm not a scary person that bites (last time I checked).....I would have listened and would have went to great lengths to make sure everything was going to be fine. I just feel sad and for this moment the options and choices were removed from my hands and when you are battling an illness that happens so often and each and every time is still as frustrating as the first. We all want to believe in the greater good of individuals but I think part of growing up and wisening up is due to the realization that is not always the case in this life. Part of this growing up though has made me realize I will always try to be one of the individuals who surprise the doubters regarding the basic goodness of people.

So, now I am at home reaching for anything in terms of ideas on how we make this work until I am hopefully approved for short term disability. I was able to stock up on medicine and tomorrow I go by the doctors office and pick up samples of medications we just can not afford. I have decided to let go of all of that anger and disappointment in my heart because when you hold on to all of that it seems to escalate into actual physical pain for me. It is just not worth it. Tim and I will be taking all of our love and positive feedback and send it towards the first goal we have right now.......getting approved for short term disability. After that is done.....well, we will go from there but at this point in time we are not sure what "where" is going to be.

We are all going to have lots of heartache and disappointments in life. I think we all need to remember who we are, what we stand for and how we want to be remembered in those situations. They will help define you and pave the path for your future. This is not only for someone who is sick but just anyone who falls on hard times. Today we have fallen but whose to say that we can not pick ourselves up and carry on tomorrow.

Now what?????

As you all know a few weeks ago everyone concerned with me and my health made a very hard decision about  me career at what my body needed in order to heal. We all made the decision to go on short term disability. I had meetings with our payroll department and my boss. The payroll department and I suggested that I go on part time status, that would allow me to keep my insurance and once my body healed I could go back to full time status. My boss decided that this was not an option for my position. That is when we started discussing short term disability. It was very clear and the payroll department was very clear that I needed to be out of work for 30 days in order for the short term disability to kick in. I was terrified when it came to my insurance. So, the payroll department researched everything and explained to me and my boss that if they allow me to stay on as an employee until the two week period my co-workers would donate their personal time to me so that I would not loose my insurance. They were giving me the most amazing gift by doing that! I was so thankful that I could focus on healing and not worry about everything else. Before everything was approved my boss wanted to make sure this was ok and set up a meeting with the assistant director. 

The day after the meeting between payroll, my boss and myself my boss called me in to her office. She looked me in the eye and said that she wanted me to start this process right away. She also made it very clear that I did not need to worry about anything else. She told me to not worry about how long it takes and that I would not be fired and would continue to have health insurance. I was so grateful and Tim finally was able to breathe and know that I could properly take care of myself when he had to leave for his new job. It FINALLY seemed as if the world was embracing Tim and I and showing us that we had not been forgotten or abandoned. That Thursday I left my office for the final time and Tim and I slept so well that night.

Over the last week I have been resting and taking care of myself. I have finally been able to stay off of antibiotics for longer that three days!!!!!! That is a huge deal for me!!!!! I could feel my kidneys smiling and my body just seemed to recover from the Pleurisy that I had been suffering with for over a week!!!!! I was so happy and so relieved. The week continued and into the weekend we went.

Saturday, May 26, 2012, I received a letter in the mail. I was informed that I was fired and my last day would be May 25, 2012 at 5pm. I was not notified that this was happening. This all happened behind my back after I was told face to face by my boss that I would not get fired and my insurance would be fine. I felt so betrayed in a way I can not even begin to explain!!!! Tim's face dropped and we realized I do not have insurance as of right now. I can not pick up my medicine, I can not see the doctor and I can not get the tests done that I need in order for me to treat my Lupus properly. My boss, in one moment, took my life from me without even preparing me for this moment. I will not receive donated time and I do not get the chance to ask why. 

I have an appointment with one for the best Neurologist in Arizona that specializes in MS. Yes, I have spots on my brain and we need to determine if this is scaring or actually plaque build up. This appointment is set for June 7, 2012 and on June 13, 2012 I am scheduled to meet with one of the only doctors who specialize in SLE at the Mayo Clinic here in Scottsdale. We have fought so hard for these appointments and have waited so long! These appointments are so important. My body seems to be revolting from the medications I am on and my immune system is just non existent at this point. We were really hoping with all our hearts and souls that I would start some new medication that would not cause as many side effects. The chemo has just hurt me so much that we believe it is time for a change. Now, this will not be possible and bring on the chemo. 

What now????? Where do we go from here???? I want whom ever is responsible for this to make this right and to be punished for lying and cheating me out of what I was told I would be receiving. I want the director to be aware of what has occurred and the life it has changed. So, that will be my focus for the upcoming weeks. The doctor appointments will be postponed and the appointments with attorneys will begin. I have to put off my fight with my Lupus and start a new fight. We will not rest until this is made right. We have so much love and support from our family's, friends and complete strangers. This love and support will continue to get us through everything we face and in the end we will all celebrate...............so, please continue to send us love and support and pass this on to anyone who will listen.

I am sure we all remember as kids sitting on the floor in front of an obstacle that has stopped us in our tracks. I remember crying into my hand and my mama coming over and telling me to get up and keep moving. I had no idea how important this lesson would be for me in my life as an adult. 

When we made the decision to leave work and file for disability, in that moment I felt defeated. I asked myself how did I get here and where do I go. I felt alone and afraid. In our house you are not aloud to feel sorry for yourself. You can have a bad day but you have to snap out of it and take that first step forward. There are some days I am frustrated and will cry BUT Tim comes in and recognizes I am having a tough time. He hugs me and talks to me but after that it is time to move on and he will look at me and tell me if that lip sticks out any farther any longer a bird is going to come and poop on it! That is my signal to pick myself up! How do you move on? Sometimes I feel as if I am going through the motions of life but really have no idea! I know most people feel like this and that is actually comforting for me. It is even more comforting to have friends with Lupus who help me understand and feels the same frustrations as I do. 

I have decided that filing for disability is actually going to give me more ability in my every day life. This new found ability is allowing me to look at my life and change up my life goals a bit. I can still focus on my future and I can still make plans, they just have to be altered a bit. So, I am making some new goals for my life!!!

GOALS

1. Go to the gym and walk everyday!

2. Go to yoga class at least twice a week!

3. Get dresses everyday in actual clothes, not pj's!

4. Rest in the middle of the day everyday!

5. Be there 110% for Tim during this transition period!

6. Understand my disease and treatments more every day!

7. Color everyday to help with my small motor skills!

8. Keep a journal of symptoms everyday for the doctor!

9. Join a Lupus support group!

10. When I don't feel well, all the above will be attempted the next day!

A door has been closed in my life and I am taking the first steps through the new door. I have no idea what this room will have in it. One thing I am certain about is right through that door, in the new room is love. I see my mama's face telling me to keep moving. I see Bob and Pat encouraging me all the way. I see Holly telling me that everything in life is special and always with me. Most importantly, Tim walks through that door with me and will continue to walk through every door I find myself at. He is full of encouragement and unconditional love. I know what ever obstacles I may face are just leading me into a new adventure in this funny thing they call life!

Change

I would say that the last six months of our lives have been filled with change.......some good change like Tim getting a great job offer and some bad change like Tim having to move to New Mexico for about seven months. Both changes will have a positive end result even if they don't feel good right now. We have to stay focused on the future to get us through the tough times today! 

Another change that we have recently made is concerning me and my health. I have been sick since last September. I have been off of antibiotics maybe three weeks during that period of time. I am not sure what set the flare off all I know is that is has not improved. I come in contact with yucky cooties all day everyday at the office and with an already compromised immune system it was just a battle I could not win. I fought long and hard but in the end we had to really step away from the situation and look at it from the outside in. Tim and I went back and forth trying to weight the benefits and the losses and everyone involved ended up at the same conclusion........it was time to go on short term disability. Our doctors, employers, co-workers and both Tim and I agreed that this was the best thing for me. I could focus on staying well and could really take care of myself. Tim has taken on this decision and has saved my life. 

I know this is the best choice for me but it does not mean that I don't wrestle with my own demons regarding this choice. I am terrified of not working! So many of us are defined by what we do outside of our home and a lot of us take pride in it. I loved telling people I was an accountant.......I know, that is odd all by itself but it is the truth! I felt it was my purpose and it was what I could do to help our family save for fun things in the future. Having this taken away has really left me thinking who am I now and what on earth will I do with myself? I just graduated college a year ago and I went to work for the State of Arizona. I had amazing co-workers surrounding me. Actually, they were more than just my co-workers, the were my work family and some of my closest friends. I miss them everyday. I worry about Tim carrying the burden of our lives on his shoulders. I worry about the general long and time consuming process that involves our disability system. I think the only time I am not worrying is when I am sleeping AND sometimes I dream about worrying!!!!!! 

Today. Today is the day I let all of the worries mentioned above slip through my fingers. Today I will walk on the treadmill because that will help me feel better. Today I will be a shoulder for Tim to lean on when life is overwhelming. Today I go back to being me. I go back to the heart of everything!!!!! I know I have mentioned this before, I was not prepared for what being sick meant and I am thankful for that. I will not let Lupus define me or who I am and I will not let the life choices we have to make weigh me down. Today I am lucky! I am lucky to have a Timmy that is the most amazing man in the world......sorry ladies, he is taken!  He makes sure I am healthy and has taken it up to a whole new level. No  one can prepare you for these decisions you, as a strong Lupus survivor, must remember that life is not a flat straight road and there will be bumps, dips and you may even get lost BUT hold on to who you were before you got sick, who you have become and I promise you that you will never be far from the life you are supposed to lead and the loved ones who surround you.

From the window.......

When I was first diagnosed with Lupus the doctor tried to explain that some of my life would need to be adjusted. As a 22 year old kid, yes, I was still a kid, I was invincible! Nothing was going to slow me down and I would show all of them that you can lead a normal life no matter what! I focused on that so much that I probably didn't give my body the respect it deserved in the beginning of this battle. I just could not be different . I could not let a disease define me or even take over my life. I thought ignoring everything that I felt was the fight but I was so wrong. I had no idea what life had in store for me and I look back now and just shake my head, could I have changed something

I am not saying that this careless abandonment of what my body was trying to tell me made my Lupus progress faster. All I know is that I was not educated about my disease or the long term effects that it would have on my body. Over the last nine months I have been watching the world go around and around while I stare out of my bedroom window. If I wasn't at work (which most of time I wasn't) I was in bed with the blinds cracked so I could at least see the blue sky. This has left me asking so many questions. How could I have taken better care of my body? Hopefully these suggestions will help someone else who is very young, who believes this disease will just do fine on its own and turns their back on what their body is just trying to tell them. I don't want you to be 33 and asking how did I get here? Why am I not traveling, spending time with friends and may not beadle to have a family of my own? 

If you can learn anything from me it is to rest!!!!!! Yes, close those eyes even if you are at work for 10 minutes. Meditate on what your body is trying to tell you. Those pains in your joints, bald spot on your head and sores in your mouth are not there to have a party! Those are your signs that you need to just slow it down a bit. Park a little closer at the store. Turn the water to a cooler temperature when you are showering. Eat LOTS of fruits and vegetables, stay away from processed food. You can never have enough water and when your home on the weekends you can never sleep in toooooooo late!!!! If your body wants to sleep Sunday away....just let it. Your body will thank you on Monday! Most importantly, take your medicine. Some of the medications we have to take seem a lot worse than the actual disease. At least that is what I thought.....so I quit them all about seven years ago. That was a huge eye opener for me! I realized just how much that poison actually helped my Lupus symptoms. It doesn't make it any easier and there are Fridays I will sit and sob because I don't want to take the chemo and I just want to skip one weekend but I have felt the consequences of these actions and never again! 

The advantages of getting sick so early in life has taught me that beauty can be found in everything. The sky is bluer to me than to most and the little things that used to jump on my nerves when I was younger have no place in my life now. Time is precious and love is unconditional. So, when you are stuck in bed watching the world go by......just be happy that you had the ability to open your eyes today and see the sky a bit bluer.

Good Days......Bad Days

Tonight is a bad night. You see, it is shot night and so I have a course of chemotherapy running through my body. The one thing I have learned over the years on this poison.......whatever is the weakest part of the body is where the medicine seems to settle! That for me is my legs, joints on the fingers.......and as of right now, my lungs. The key to dealing with the pain is to catch it before it gets toooooooo bad. That is hard to do sometimes because it can come on all of a sudden or you may not be somewhere you can medicate yourself. Tonight it was pretty all of a sudden. This will be a "wish a I was a fish night!"

Normally my better half, Tim, is here and just having him next to me helps tremendously! He makes me laugh and keeps my mind off of everything. He is amazing when it comes to the support he gives to me when the pain comes on. He even tickles my back for hours when it gets really bad. The tickles seem to help the nerve endings focus on something other than the pain. Where is Tim tonight???? Well, my amazing love has so many friends in so many circles and he is up north helping our amazing friends at the Overland Expo and I know he is having a fantastic time and yes, I miss him and wish he was here to make me laugh BUT there is no other place he should be than teaching this weekend!!!!!

So, tonight I will grit my teeth, may shed a few tears but most importantly, I will get through it. I will endure the pain and I will focus on the fact that tomorrow is a new day and a new chance for a painless night.

Explanation

I found this amazing story! Two good friends were at a diner. The one friend had Lupus and the other one asked, what does it feel like.............

The Spoon Theory 

by Christine Miserandino 

www.butyoudontlooksick.com

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  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 neverending 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 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 ant 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

Silent Support

Over the last five years the most unexpected thing I have encountered was support and love. I always new I was loved and my family would go to the end of the earth for me...it is the kindness and love from complete strangers that share one tie with me......being sick. It is this love and understanding that has picked me up and helped through dark days and nights. From the Lupus forums to the connections you make on Facebook. At work we were talking about Facebook and I told them the only reason I am on Facebook was because it helped me keep in touch with family and old friends......I have to take that back.....I look at my friend list and I see so many faces I have never physically seen but I know them. I know them from the experiences we share with our families, friends and doctors. I can ask about a symptoms and with in minutes I have at least five answers or experiences and THAT I will never stop valuing! They are my invisible support group but one I could never live without. 

To my Lupus family.......I love you all so much and you have taken a piece of my heart with you on your journey and I will always be there when you feel alone.......thank you. 

Dance

I swear I stared dancing in my crib!!!! Ok.......I think I started dancing when my dad would practice with his band in the basement. This carried on to childhood dance classes!!!! I was clumsy and I think my mama put me in dance to help my coordination........well, that didn't seem to help BUT the love of dance was sparked and I danced for years!!!!

The one thing I have missed over the years is dancing. The way you can tune the world out and just flow to the music. I miss bringing joy to individuals who appreciate this form of art. I can remember the exact moment I fell in love with my better half Tim......and of course it involves dance. Tim and I were hanging out together and we were loading up the IPOD for a trip we would be taking. We sang and laughed so much!!!! Then a song came on, Canned Heat, that made us both shake our booties!!!! Tim stood up and asked me to dance.....and so we did!!!! We spun around the room, jumped on the bed and danced until we could not breathe!!! Tim has brought movement back into my life as well as my heart and I am so happy that first memory included dancing.

Tim  and still dance but some days it has to be very slow dancing and other days we can jump around! The key is just to move! So, tonight put on your favorite music, your dancing shoes and loose yourself!!! Enjoy the music taking you away from the pain!!!! Lupus may have taken your body but it will never take your mind! Even if you are stuck in bed....shake that booty! I guarantee it will make you smile....even if the smile is for only a moment!

........dance like no one is watching.........Mark Twain

Emotions and Support

No one prepares you for the emotional roller coaster you and your loved ones will go on when you are chronically ill. The doctors never mentioned the sadness and struggle everyone round you, including yourself, will have to go through on a daily basis. There are days where you look in the mirror and try to remember the young, vibrant self that existed when you were younger. I try to remember what life feels like when you are not constantly in some type of pain. I hate the idea of going to work, only to worry about what yucky bacterial or viral infection you will take home. It is heart breaking! 

These thoughts can be as debilitating as the disease itself. One of many things I have picked up on my own is the result of positive thinking! I am home today and was only able to work for four hours. I am glued to the couch resting (and typing) and this is enough to send anyone into depression but no, that is not aloud in my home! Timmy always tells me when he starts to see that bottom lip pop out, pull it in or a bird will poo on it! Normally this works and makes me smile but there are some days you have to rely on your own thoughts and heart to get you through the tough times. Today and everyday I am lucky. I am able to wake up and see the sun shining, even if it is only through my bedroom window. I can call my mama everyday and watch my beautiful nieces grow up! Life could always be worse than it is right now. I am so thankful for just being alive! At anytime for any of us, it could end. I want whomever I leave behind to be able to look at everyone and recall I smiled everyday even through the pain. I want them to remember my laughter and not my tears. I want to be an inspiration to my family so that they will continue to hold their heads high even when it would be easier to look down.

I choose to live. Tim and I are not married and we started dating after I got sick. We have been together for 5 1/2 years. Everyday Tim chooses to live.... he chooses to live with me and Lupus. We come as a package and to love me is to love all of me, which he does! Sometimes I think about him and wonder how did I get so lucky?!?!?! We choose to love life together and get through this one day at a time. That, for me, makes those debilitating ideas disappear and it allows me to accept myself just the way I am. 

Unfortunately, everyday will not be a good day and we will get sad and we will want to hide under our covers but we can't. Life is to short to live like that! So, today when you are leaving work, cooking dinner or spending time with your family......look a little harder at the blue skies and feel the sun hit your arms......tell your better half that you are thankful for them and the unconditional love they give and make those ragamuffins laugh a little more and stay up a few minutes longer!!!! Open your hearts and minds and feel a little bit more today than yesterday!!!

My mamacita!

I love Mother's Day!!!!! I love the fact that today we celebrate the women who brought us into this world, enrich our lives and support us unconditionally!! It is a beautiful day for amazing women!

My mama's name is Jan. I appreciate her more and more everyday of my life. She has raised me to be a strong, independent and educated women. She taught me the value of life and love. My mama was a single mother and so I know her life was not as easy as others. She worked hard and even went to school!!!! Because she was a single mother, she worked for her children. We may not have had a lot but my sister Holly and i would never had known. She sacrificed everything for us to have shoes on our feet and clothes on our backs. We always had warm meals in our belly's and every once in a while she would take us out to Rax (Holly's favorite)  or Captain Dee's! We never wanted for anything. When a new Disney movie would come out my mom would rush to the store and buy is, hide it on top of the refrigerator and we would have to wait until Friday to watch it! As a kid that seemed like forever but as an adult is a precious memory that I hold in my heart.

A few years ago while at work my mama suffered from three aneurysm leaking in her brain. They rushed her to the hospital and she was immediately transferred to a hospital that had the capabilities to help my mama. After a four hour surgery she was sent to intensive care. As she woke up she only had her short term memory. It actually was pretty funny! She would wake up, look at us and ask when did we get there.....over and over!!!! Over the next few days my mom developed a fever and had trouble breathing. My sister and I watched as they put mama on a breathing machine. The put her in a medically induced coma. The doctors started to prepare us for the worst and even told us that if our mama survived she may need care for the rest of her life. Holly and I started to get things in order. We went through the process of changing over the power of attorney and even had to shut off some of the utilities. I was devastated. I should mention that I spoke to my mama at least four a days......I know, cut the apron strings but she is my best friend! Not having my phone ring with her on the other end was the hardest part. My mom's friend Kim would call me just so I had someone to talk to. I just missed my mama so much!

After weeks and days of not knowing the doctors finally decided to try and take her off the ventilator and sure enough, the strongest women in my life began to fight her way back to us! It took a few weeks but she was home and functioning almost at 100% by her birthday!!!!!!! I had never been so proud of my mom!!!!! She has always been a fighter and this was the hardest fight of her life but she did it!!!! She has returned to her job, has her own home and is enjoying her life as a grandmother!!!!

Today I am not able to be with my mama but I carry her in my heart everyday but especially today! I have already called her four times and I plan to bug her all day!!!! My sister and her little ones are spending the day with her so I know they will keep her busy. 

My message to my mama today and everyday is that she is the most amazing mother and I was so blessed to have a parent who loves me and has turned int o my best friend. I am not sure if I am able to have children but if I do.....if I am half the mama that she was, I will be a wonderful mother.

Just a fun fact for us Lupus patients!!!! Lucy in the Sky With Diamonds, by the Beatles was written about a little girl that actually was suffering from Lupus. Here John Lennon's son explains.........

Today, stop and listen and maybe whenever you hear this song you will think about Lupus and the battle Lupus patients fight on a daily basis!!!!!

As the sun goes down.......

Nights for me can be the toughest. Yes, it seems to be when all the pain surfaces but it is the quieting of the mind that sometimes really gets to me. There is nothing but silence. You are alone with your thoughts about life and about your disease. The pain seems to creep up in the weirdest places and you sit there thinking......this pain is not caused by an infection it is caused by my own body!!!!!! That in itself is terrifying!!!!

You see, I was born into this body and I grew up in this body and now it is so ANGRY all the time!!!! I wish there were anger management classes for autoimmune diseases!!!! Boy do they need them! I don't know how many times I have read to treat your body like a temple....well, mine temple crumbled a long time ago!!!!!! So what do you do now???? Your body is angry, the temple has crumbled into dust and it is in the middle of the night. AMBIEN!!! Ok, there is a stigma when it comes to sleep aids..... no one wants to admit they are on them but everyone wants to have them. I guess I am kind of lucky. The doctor told me once to imagine myself with Lupus as a regular sized snowball. If you do not sleep one night and the next is restless you have started this chain reaction and it rolls and rolls down hill picking up steam as it goes and growing larger and larger. As you may have realized sleeping is one of the key ingredients to Feeling Well Soup! I am telling you from experience.....Feeling Well Soup is the best thing on the planet! For me Ambien helps sooooo much! 

They tell you that Lupus will cause you to feel a bit more tired than you normally would. Yeah right......again, feeling tired at the end of the day and wanting to relax is completely different than wanting to lay down in the middle of the grocery isle. No one told me that along with this utter exhaustion you would also loose the ability to sleep. Lupus patients are known to not be able to hit that deep REM sleep. It may be the pain, the disease itself or even being tooooooo tired. All I know is this was never fully explained and I still don't understand it. 

Let me tell you again.....AMBIEN......and when all else fails, turn over to your sound sleeping loved one and shake them until they wake up because I know when I can't sleep no one else in the world should be sleeping!!!!! Poor Timmy!!!!!

I wish I was a fish!!!!!

You heard me right.....I wish I was a fish! BUT this fish must live in warm water.... not toooooooo hot and not toooooooo cold!!! So, I know you are wondering why a fish and not some exotic animal like a Norwhal, that does exits thanks to Timmy!!!! Well, it all started last night. Around 7pm I could feel it coming on and I knew this could be a long night ahead of us.........severe leg pain!!!!! My prediction was correct and both Tim and I struggled through out the night trying to find ways to help relieve the pain. At one point I crawled into a warm bath and finally felt some relief. While I was sitting in the tub and trying to relax I had a revelation....I should be a fish!!!!! When I am in warm water the pain just seems to float off of me like magic and relief is felt for a moment!!!! This is where the water temperature does play a HUGE  role for me to live as a fish......you see, people who suffer from Lupus have sever sensitivity to temperatures. Too hot of a shower can cause a painful and itchy rash while to cold can cause cramping and pain both can cause a flare, so, that water must be just right!!!! Just like Goldilocks found in baby bears bed.....just right!!!!! As I continued to dream of being a fish and with the pruning process complete....I slipped out of my fish world and back into real life. The warm bath did not cure the pain and it did come back BUT for one moment last night I was able to relax and dream of being a beautiful purple fish that lives in just right water!!! 

That is one thing I have found that is very important in my life and others who have chronic illnesses, keep dreaming! I may not be able to remember what it feels like to not have pain or what it feels like to make it through the day without feeling so tired that you would gladly sleep in the grocery store isle. BUT I do dream. I dream of walking down the isle at my wedding. I dream of chasing my own children one day. I dream of going to Germany to see where my family originated from. I dream about everything!!!! Lupus can take a lot away from a patient and their families but it can never take away your ability to dream! So, today while I am stuck in bed and recovering from a night of hell I will continue to dream.

Let's begin........

I am looking at today as the beginning of the rest of my life. No, there is no big change.....I'm not getting married or having a baby! I am just a woman who suffers from a chronic disease and I am trying to find my way through the murky waters of what is and what will be.

My name is Danica and I have an autoimmune disease called Lupus. It is an ugly disease and different for every individual who experiences it. It has many forms and many symptoms some of which can lead to misdiagnosis for years. It is frustrating for not only the individual who suffers from the disease but also for their support systems. It is unpredictable and painful. This blog is going to be about me and what I experience through out the life of my disease and hopefully it can related to you as the reader. This is going to be my way of sharing with the world how I am affected and how my loved ones are affected by this disease. As you will see over time, there are good days and bad days and the frequency of each is very unpredictable! In return, that makes life VERY unpredictable!

No one prepares you for this in life and once you have Lupus no one tells you how to LIVE with this......that has been the hardest part for me and my loved ones. We feel very  unprepared at times and afraid of what the next day will bring. Again......it is what they DON'T tell you that seems to affect your life more than anything! So let's figure out how to get through the things you are not warned about or prepared for.....let's figure out what they don't tell us so that next time someone is diagnosed there will be less questions and more answers......here we go!!!!