Giving Back Would Be the Best Christmas Gift of All

 

Last week, my husband Frank, our daughter Olivia, and I started getting out our holiday decorations. We were very excited to celebrate, because last year, lupus quite simply stole our holiday. We were determined that this year was going to be different. We decided to play Christmas music, dance and sing, and change the house into a winter wonderland. We were having so much fun. It felt like we were the picture perfect family! I watched as my husband helped my daughter hang ornaments high up on the tree by lifting her up on his shoulders. I took a moment to flip through an envelope of Christmas pictures that I found from last year. I barely took pictures last year. It was a year I didn’t want to remember.

 
You see, three weeks before Christmas last year, my lupus caused swelling around my spine and I had NO feeling from the waist down. Can you imagine how frightening that was? The doctors had no idea what was going on at first, so I felt like a “science experiment.” For 17 days, instead of baking cookies and visiting Santa with my 2-year-old daughter, I was trapped in a cold hospital room. My doctors tried numerous treatments until they finally sent me home 20lbs heavier, with a bloated and distorted face, from steroids. We’d resorted to chemotherapy, and I was feeling the side effects. I was weak and nauseous and “chemo-brain” was making it hard to remember anything. So, because of lupus, time and memories that can never be replaced were stolen from us. I was in pain and exhausted, but I wanted to at least have a festive, decorated Christmas tree for my precious daughter.

As I flipped through the small pile of photos, I was immediately drawn to one picture in particular: there was my little Olivia in a bright colorful striped “footie” pajama. Her eyes were shining and the Christmas tree lights were reflected in her big beautiful brown eyes. It made them sparkle like diamonds. Her little hands, those perfect little hands whose fingers I’d kissed every day since she was born, are reaching up as she playfully starts climbing. I’m so totally enchanted by her complete happiness…her infectious smile…that I almost forget that she is playfully climbing onto my wheelchair. My wheelchair! Olivia is a typical toddler who loves to run, jump, and climb. Playing around and on my wheelchair was something she did and thought it was silly. Unfortunately, for her seeing medical supplies of some kind in the living room is normal. But it is NOT normal. This is NOT what I want for her and my family. It breaks my heart.

I’ve lived with lupus for over 18 years. It sometimes makes it literally impossible to get out of bed in the morning. I’ve learned to hide disfiguring rashes with makeup and the bald spots with hair extensions. Scheduling my day around the 36 medications I have to take each day is “normal” to me? Since I have had lupus over half my life, I really do not remember what it feels like to be healthy. I’ve been hit with pain and fatigue so immense I could only curl up and cry. It’s obvious that lupus has greatly affected my life both physically and emotionally. What might not be so obvious is that lupus not only crept into my life leaving destruction in its path, but lupus has shattered memories, weighted down hope, and fractured relationships in my family. These are the people I LOVE, but through no fault of their own, this horrible disease has injected fear, pain, and uncertainty into all of our lives.

I have been thinking a lot about family, gift giving and the holidays as we all do during this time of year. You can wrap anything up in fancy paper and a pretty bow and it looks like a good present. But is it a gift? I’d like to share with you the gifts I wish I could give my family this year.

If I had the chance, I would give my parents the gift of peace. Lupus brought a level of stress into my parents’ lives they could have never imagined. They spent the better part of my life worrying about my health, my life and my future. They have carried the burden of added health expenses, not once letting me “in” on the secret debt they were developing. They spent countless hours researching and desperately trying to find a diagnosis for their ailing teen daughter. Sweet dreams and restful sleep were replaced by sleepless nights when you are anticipating your child calling from the other room that they are in pain, or feel a fever… Hearing your child cry in pain is a heartbreaking, unbearable sound.

No parent wants a sick child. I am sure my parents looked at me with a world of possibilities for my future like I do for my daughter. They had to grieve the death of the dreams they had for me and find a new way, a new life. It makes me sad that even now that I’m grown up, because of lupus they are never done parenting… My father helped watch my daughter Olivia for almost her whole first year of life, every morning since I was unable to care for her myself. I have to call my mother when I am hurting, depressed, or even need help doing laundry and cleaning the house. I simply would have no clean clothes if my mother didn’t help me. I hate to even say this out loud but most days I can not function if I do not have some help.

My parents should be enjoying retirement at this age; I should be starting to take care of them, but I still need help and they still worry because nothing has changed for me. I may have grown up, but the toxic treatments and the cruel symptoms of lupus are still the same.

I would give my brother the gift of  friendship. I know it must have been hard to lose my parents’ attention when he was doing good things, only to see the outpouring of attention and love to me when I was so sick. There are only so many hours in a day and unfortunately many of my parents hours were with me in doctor’s offices, in waiting rooms, in hospitals, getting home schooled, and even just helping me do everyday tasks. I didn’t ask for visitors, gifts or flowers, but when they came to the house they were for me. I can’t help but wonder if lupus stole our friendship. I want my brother back and I need his friendship. I am working hard to mend the broken relationship I have with my brother, but at what point are there too many hurt feelings, too many scars to overcome? I look at pictures of us younger and see how my brother always had his hand around my shoulder, or was looking out for me. Maybe he always felt guilty that this was the one thing he couldn’t protect me from? Maybe because he was 5 years older than me, he knew about all the stress and financial hardship my parents were going through, that my youth shielded me from? Maybe as a teenager, he never really understand why his sister couldn’t wake up in the morning or couldn’t “pull her weight” with chores? Maybe he still doesn’t understand? Maybe he just doesn’t care? More than anything, I wish I could give him a childhood not dominated by my illness. I wish he could see me as an adult, as a person he respects, not just a sister but a friend.

I never know what to get my husband Frank for Christmas… I guess that is a problem many wives have. I was in a remission when we dated, and I gave him some of the best years of me and didn’t even know it. I didn’t appreciate my working body and my seemingly limitless energy. I gave him time, thoughtfulness, and even sexiness. We didn’t know or appreciate what a remission even meant until my disease got worse. I sense fear when he touches me almost as if he has been conditioned not to by the winces of pain he has seen across my face. Sometimes with lupus even the slightest touch hurts, and most times it hurts your soul to never feel “good touch”. Even holding hands hurts when each joint is aching… so slowly you just stop trying.

When in your wedding vows you say “in sickness and in health”, you never dream it will be mostly sickness. We had dreams of a beautiful future like any newly married couple does. Our reality might be that my body can’t handle having more kids, but we dreamt of a big family. Our real lives might be filled with some tension and stress about all the things I can’t do daily, but we always used to talk about all the things we had planned for our future. We have spent holidays in hospitals and we have slept on the floor because I could not walk up the stairs. My husband has learned how to deal with insurance companies and dole out medications better than a pharmacist. Frank has washed my hair when I couldn’t lift my arms, and has taken care of our house and daughter with enough energy for two parents when I am not able. The funny thing about living with lupus is that I never have lupus in my dreams. This is not the life we wanted; this is not the marriage we dreamed of. He takes care of me, and I feel guilty for it.

This year, after years of slowly becoming caregiver and patient, I would like to give my husband the gift of love and becoming husband and wife again. This year I want my husband to have his wife back.

I dreamt of my daughter Olivia way before she was even born. I imagined I would be the perfect mother and be able to take care of her every need. I wasn’t able to be the cute pregnant girl with a belly, who gets to shop for and prepare a nursery. I had a pregnancy filled with fear that she would make it and that I could even stay pregnant. I was stuck lonely on bed rest and was hospitalized 4 times. I didn’t imagine needing as much help as I do to raise her. I could never have imagined the amount of guilt I would have for needing to put her in daycare because mornings were too hard for me to function. I do the very best I can, I love my daughter with every fiber of my being, but I can’t simply love her enough to magically get her to school, to wake up in the middle of the night if she cries or to carry her up the stairs to put her to bed at night. If love was enough I could be the mother I always wanted to be, but love isn’t enough to stop lupus.

Lupus has stolen time together with my daughter Olivia, time that she is being watched and cared for by other people then me and time when I am in the hospital, not home with her. She even came to this world early because of lupus and we lost that precious pregnancy time to bond and to let her little body grow. But she was a fighter from the very beginning and proved everyone wrong. I would like to think she is a little like her mother. My body might be weak, but my soul is strong.

It might sound like Olivia is too young at 3 years old to give the gift of hope, but she is the perfect age. You are never too early to put hope where there once was none. I am hoping that having lupus in her life will have some positives like teaching her compassion, empathy and a desire to help others. I would like to think that because we have had to spend so many nights in, that it has brought us closer as a family. I want Olivia to have hope for a better future and a world where the lupus she knows about is so drastically different then the one I knew. In her little life with lupus one of her first words was medicine, not ball or cat, but she knew my pill case and she associated the word “medicine”. That is a memory that can’t be erased, but I can have hope that she will never have to associate the words “fatal”, “chronic”, or “incurable” with lupus. I am hoping in her lifetime everything I know about lupus will be archaic. I do not want to imprison her with the job and the future of taking care of her mother. I want to teach her peace, friendship, love and hope. I want to be here and I want to teach her these important lessons. Lupus has stolen so much time from me and Olivia already, and although it may sound dismal I always have in the back of my head that we do not know what the future holds. We do not know how much time I will have with Olivia because right now there is no cure for lupus. In the past 50 years little has changed for anyone living with, or loving someone with lupus.

Yes, my gift to my daughter would definitely be Hope. Hope for a new treatment. Most of all I want to give her hope that something will change… maybe, just maybe in her lifetime things might get better.

I think the feeling you get from giving is better then from receiving. I know that lupus has affected my whole family and even my friends. I know that at times lupus has hurt us at the very core of who we are.

If I was able to give the gift of peace, friendship, love and hope to the people I love most in my life that would be the best Christmas gift of all.

 

Written by Christine Miserandino

 

 

If you would like to see  more from Christine Miserandino, click here to see her read “The Spoon Theory”.

©2017butyoudontlooksick.com
  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

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  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com,,..

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com

  • Lish

    Christine, I’m truly sorry for your suffering. I understand fully what you are going through. I am in the same situation but the difference being is that I don’t have a precious gift like Olivia. You have a wonderful attitude and you have inspired me to try to have a better outlook on my situation and deal with the cards I have been dealt. None of us know exactly why we are chosen to be the sufferers but you truly are an inspiration with your love and hope that is in your soul. I wish you peace, hope.and love! Your daughter, your husband, your parents’ brother and friends are part of your lupus for a reason. Maybe they don’t realize it right now but it is to know truly what a strong remarkable person like you can do with just the love in your heart and soul. I hope you are having a wonderful Christmas. I will think of your story often and try harder to be more like you as I have been so soured with pain and rejection and feeling like a burden that I have forgotten about love! I know there are those that live me and I have chosen to reflect more on why me and what the next bad thing will be that happens to me. You have no idea how your words have helped me and how they will change my life. Best wishes to you and yours and here is to a healthy life!

  • Liliana *Lilykat* Guillen

    Christine, this is a beautifully written piece. I admire your strength and courage for sharing this with all of us and I thank you because I know so many Spoonies can relate to everything you wrote. The part that really resonated with me was the part about your brother and how you would give him the gift of friendship. I too have a brother; he’s four years older than me. When I started to get very sick from the Lupus (before we even knew it was Lupus) our parents attention was dominated by my health, and even though he was 20 something, he still needed our parents. I felt guilty for taking them away from him. I still do. He since has married, moved out, and started a family of his own… but I often wonder if he looks back on our family and resents me for getting sick. No one chooses to have SLE. I know he doesn’t wish for me to be sick but I wonder if he dislikes me for being the sick one. Did he ever think I was exaggerating my symptoms and my pain? Was he wishing to move out and get away from us? I don’t know and I doubt I ever will. I’m happy that he has found happiness with his wife and kids, but I miss him. I miss him before any of this happened and he was the laughter in our family. I miss his funny stories and loud, melodic voice when he sang all the words wrong to whatever song was on the radio. I know we can’t go back, but I would like to give my own brother that same gift of FRIENDSHIP that you wish for your brother. I hope to one day be able to call him my friend as well as my brother. I hope that happens for you as well Christine. Thanks.

  • Tonia Lovejoy

    Your wish to give your family “peace, friendship, love, and hope” is beautiful, through your writing you can really sense the sincerity and deep love you feel. Don’t give up on the friendship with your brother. Keep reaching out to him because he doesn’t understand that forgiveness will free him. He may have anger towards you for the time your parents spent dealing with the lupus, but he needs to forgive himself and you. I will pray that the two of you are able to bridge the chasm that separates you right now. I will pray that he understands that you did not ask for this disease that has robbed so much from your family, that it is not your fault that you have lupus, that you would do just about anything to make the disease just “go away,” and that you have never stopped loving him and needing him to be your “big brother.” God Bless you and your family and please keep posting. Your posts shed a ray of sunshine into many lives on a daily basis.

  • Patrice Howe

    Your words are so perfect for all of us–unfortunately for you -you may suffer more physically, than some of us, but your words to your family are all of our words. Thank You for writing down the words we all need to hear and relay to our loved ones.
    Merry Christmas!

  • Diane

    I cried so hard the first time I read this, and then I cried even more today. Everything your wrote about concerning a man and woman who have committed themselves to each other…I also was, if not in remission, at least much more mobile than now…but the last few years I have been steadily going downhill…my occassional flare turned into monthly ones, then weekly ones, and now I just count myself lucky when I have a day or two where I at least appear like a normal (even though inside I am biting my tongue to keep from whimpering from the pain). My dearest love is a chronic invisible disease sufferer as well…we are now in our early 50’s and he’s had Psoriatic Arthritis since he was 18. He is almost always upbeat. Me? I just get slower and more needy. I hate it, I really do…he didn’t know me this way when we met, but he insists he loves me beyond measure and always will no matter what my diseases throw at us next. But for the first time since I was young I am chubby…I’ve never been chubby as an adult, not even when I was pregnant with my children…and sometimes I think that has me more depressed than my state of pain, etc. I hate seeing me in a mirror. I hate being uncomfortable in my clothes because they are too tight. And of course, I hate for my love to see me because that isn’t who he fell in love with. Oh Christine, your remarks about what disease can do between two people who love each other…even though one of them keeps on loving you regardless and helping out where ever and when ever he can so you won’t overuse your spoons…it justs makes you weep!

  • You are a beautiful person, Christine, and you have already given back to so many people in so many ways. Never discount the gifts you have given those of us who deal daily with invisible illness. Some of us were caretakers, too, even as we suffered. You gave us a place to come together and know we were not alone.

    Spoons Aplenty for your holidays!

    Ernie
    Fibromyalgia, and a host of other things
    Ex-caretaker to Barbara Shaw
    http://lasarina.wordpress.com/2010/06/14/barbara-allen-underwood-shaw/

  • Christine,
    Your words never fail to come across as poetic, heartfelt, intelligent, and inspiring. You are a leader of the sickly. Your strength through adversity is commendable. And you are a beautiful soul.

    Wanting to give even when so much is stolen from you is saintly. Your will to give emotionally charged gifts, dynamic. Your family is lucky to have you just as we are lucky to know you through your writings. You do not deserve the hand that has been dealt to you, but you play the deck with grace. Thank you for again sharing with us your dreams as well as your struggles.

    You are not alone. We adore you too. My gift to you this year is PRIDE. I am so proud of you. For everything you do for the spoonies, for your courage to make yourself vulnerable to the world, and so much more. I feel as though I know you. And the you I know, I am so very proud of.

    Merry Christmas,
    Sonja

  • I felt ever word as I’ve seen lupus take away from my teen daughter since I’ve had lupus.

  • Colleen

    You are a very brave woman. I cried thinking of my own daughter and putting myself in your parents place. They adore you sweetie, just as you adore Olivia. You would do no less.
    May God watch over you and yours this Christmas season. Take what you can (all the good stuff) and leave the bad stuff to God.

    There is no real answer to all of the diseases that we are fighting. Some things just don’t make sense, but we have to live with them.

    Keep that hope alive my luv.
    Colleen

  • Dottie Balin

    Christine,

    Beautifully written ! As I am reading this, my eyes are filled with tears. I feel your pain and frustration. You bring strength, hope and inspiration to us all. My wish is that you and your family have a blessed Christmas with an abundance of SPOONS…..
    Thank you for sharing..
    Dottie 🙂

  • Christine as Always I find you a amazing woman I hope your family this year will have the best Christmas Ever, Remember to video Tape the whole thing.

    I sit here and read this story and it give’s me courage to get threw this year not ever knowing what is in store for me and not having all my test results back, so Thank You for giving me Strength and Faith to make it threw the Holiday Season.

    Mary Bell

  • Christine- this post brought tears to me my eyes. You are right about the gift of hope. “Hope sees the invisible, feels the intangible and achieves the impossible”. You touched upon so many points so effectively. I think this holiday season, I will take a step back and reflect. Reading your post hits home because my mom helps me too when iam in a flare and the first couple of years when I was too fatigued to do things. She was the one who fought when I couldn’t! It has not been easy on her, but she reminds me to “give-in”, not to fight it. Being European, this does not come easy in our family.
    I look forward to future lunch dates. dress shopping, etc instead of ER visits, doc appts, or just plain worrying about Lupus. Thank you for your article. Gave me alot to be thankful for.

  • As always, you have wrote my life story once again. But I am the ghost of the future!
    I have two children by birth and one adopted. Then my illnesses made even adoption impossible. Now they are grown.
    Our three children were effected by my illnesses in three different ways, of course. As adults, this came up during a family time.
    Our sensitive middle child cried that I was never ‘there’ for them. The illness seperated me from being able to be a ‘real’ mom. (I sewed most of her clothes and homeschooled her during a remission) She is the one who still needs me the most!
    Our ever practical oldest argued that Mom was ‘always’ there for us. Mom was housebound – she couldn’t get away! He was glad I didn’t have to work like the other moms! I was always there to talk and share.
    Our youngest, (our own version of ‘clueless’) piped up wanting to know what was wrong with me. He was too young to ever remember me any other way. I was just mom to him and he wasn’t grading me on a curve.
    My granddaughter considers me her best friend. Now six, she acts like a queen on her throne when on my lap for a wheelchair ride. She pretends to be me on a good day with a cane shortened to her size. Her favorite thing to do is to accompany me to the pool (my exercise therapy) and we practice our kicking and moving our arms and such. We ‘dance’ and play in the water. When done we cuddle under blankets with hot chocolate and movies and books.
    And of course, I have the earth angel husband who makes so much possible and expects nothing in return.

  • Jeanine

    Congrats Christine on another beautifully written, personal story. I agree with the others, celebrate every blessing and accomplishment no matter how small. Last week, I hung up Christmas lights and decorations outside. Christopher ran outside and hugged me and said, “mom, you haven’t done this in years, I’m glad you are feeling better!” It almost brought tears to my eyes. It made me realize that I have spent so much time these past few month worrying about little things, that I didn’t notice physically I am stronger than I have been “in years.” I’ve come along way from the days when I needed help getting out of bed. I will celebrate my health this Christmas and I hope you will be able to have a wonderful Christmas filled with great memories.

  • nancyj

    I am so blessed that my Lupus is mild and the other problems are under control (thyroid & lupus hepatitis). I’ve never been able to achieve remission in the 15 years since finally being diagnosed, but my wonderful doctor has kept me going most of the time. Your piece was an awsesome view of what our families and friends do for us. My mom dragged me to doctor after doctor as a child all of whom diagnosed it as “growing pains” and did nothing. Being finally diagnosed in my 40’s was such a relief.
    I wish you and your family (and all reading) a wonderful Christmas, Happy and more importantly HEALTHY New Year!
    You are a blessing to all of us. THANK YOU!

  • Fran

    Wow !!!

  • Teri Kennedy

    One last thought……same letter as you have written but look at it from a different angle. Change the focus where the paper was filled with the burden of the Lupus. I challenge you to right the letter again, this time with the focus on all you have accomplished in your life. All that you are blessed with. Focus on the positives in your life in spite of the obstacles.
    You have accomplished goals and a life that many healthy people cannot seem to find.
    You have helped and inspired tens of thousands of people around the world, you have found love and a husband, Frank, who truly defines a real MAN. You gave birth to a daughter, Olivia, a dream that many both healthy and those dealing with illness for what ever reason cannot.
    Families are not perfect. Many siblings have their issues in the most health-hardy environments.
    Yes, Lupus has put some serious obstacles in your life’s path but maybe in some really odd way-this is a blessing.
    You are what I call the “Wonder Woman” status. A strong, warrior, survivor and support for the cause! An example of power over your life. [it] may have taken away time and challenged your will. But YOU Christine have conquered!
    You have not, and will not let Lupus rule your life. Your life is large and full and abundant with LOVE. The “disease” cannot and will not take any of that away from you! Blow all the guilt into a large balloon and release it into to the air! Take your power back and put on your best “Towanda” attitude [From “Fried Green Tomatoes”-movie]
    Much love, a fellow Wonder Woman – Teri

  • God Bless You Christine. You r not alone. This is my ”exact story” same story except w/ RA Lungs. Rhuemetoid Arthritis ate my lungs away. My daddy (RIP) who raised 7kids by himself is in “heaven” I miss him but am so glad he is not here to see me @ my ”weakest”. I live alone & was a single parent. My 3babies r so amazing helping me. Family & Friends too, but it truly breaks my heart when my lil granddaughter who @ 18months wld toddle over to my oxygen machine & bring my tubing to try & put it on me. She’s two now & after every hospital stay she lifts my shirt looking for ”electronic heart stickers” to make sure they r all gone,if not she takes them off me & sticks them to her. My Christmas wish for u & ur family is to have a Christmas w/many ”heart~filled blessings”. It is my honor to know you Christine <3

  • Well written, lovely. I hope you realize how very fortunate you are to have such a supportive family. You mention that “no parent wants a sick child.” Well, some parents act as yours did, and try to find a cure, a way to help. Others act as mine did, and stop speaking to that child. That is one sure-fire way to not have a sick child! I’ve lost countless friends because of my illness, and my (now ex) husband left me almost 3 years ago because I was too much of a burden.

    Thank you for sharing your story with us, and please thank your parents and your husband for being supportive and remaining in your life. Some of us are alone during this holiday season because we committed the crime of being ill.

  • Rose

    Christine this is beautiful. It is exactly the gift I need to give my family this Christmas and I’m very grateful to you for sharing it with us all so that we can give it to our precious and deserving families.

    Lately I’ve wished so much that there was a way to take away all the pain my illness has inflicted on all of us, but even a cure wouldn’t do that – a cure wouldn’t take away a lifetime of agonisingly painful memories, memories of experiences that have changed us to such a degree that we can never be the same again. My mother has always been so strong and practical, but now I see her crumble at the first sign of a complication. She has sat by me through such incredible suffering and desperation, watched me move close to death and now knows that there are seemingly no limits on what I can be forced to endure that, like me, she lives in constant fear of what will come next.

    For my parents all the aspirations and dreams they once had for me have been replaced with the simple hope that I will be loved and well cared for when they are no longer able to do so and that such intractable suffering won’t be with me forever. My family have to do absolutely everything for me (feed me, turn me in bed, my medical care, my personal care – everything) and it’s been like that for too many years to count. The number of things they’ve missed out on and continue to miss out on because my illness affects every area of their lives feels so unjust and cruel. And as I degenerate it becomes harder – just as my parents are reaching the age when they not only deserve but need an easier, more relaxed and self indulgent life. I watch them suffer and feel terrible that I’m totally unable to care for them in the ways I instinctively want (just as Christine feels). The fact that I can’t hug or reach out physically in any way to my family due to my pain makes it even worse. All I have is words (when well enough to speak them): I love you. I’m sorry. And how true those words are.

  • Cat Buchanan

    Christine, I feel so honored to “know” you through FB. You continue to eloquently describe what living with a chronic illness is like. I have TOO MANY chronic issues to list (we ALL know that they never travel alone, they travel in PACKS) and the Spoon Theory has helped me in so many ways with so many people. I am lucky to have a husband who understands that I can’t “do it all” and that my priorities have to start with myself and our wonderful 4 yo child. As a fellow mom to a young child, I have your same hopes and dreams for MY child … 1) that he won the genetic lottery and I didn’t pass along my illnesses to him, 2) that he understands it’s not for lack of love for him that I can’t “do” everything I would like to do with and for him, 3) that he somehow develops a sensitivity and compassion for those who may not be as healthy as he (hopefully) is, 4) that he thinks I am a “good” Mommy despite my limitations.

    I am in your debt and am in AWE of you. Thank you.

  • Christine, this brought tears to my eyes…
    Living with a chronic health condition all my life..it may have been “just asthma” but i remember nights in the ER, pneumonia 3x a year..and now with fibro and chronic fatigue..i know it has stolen my marriage, time with my kids..and i’ve passed FMS onto my daughter..
    This is beautifully written and makes me want to write something like this to read on air on my show Tuesday night.. this is your personal giving.. i need to do mine.. You are an inspiration my dear! Love and Gentle Hugs..
    Beth…(aka Pryzm on fibrohugs)

  • Mandy

    I used to babysit my neighbor’s little girl, from about age 7 months to when she was almost 2. I probably wasn’t the best choice because of my limited mobility (I still refer to myself as the Amazing One-Armed Diaper-Changer) but I was the only unemployed adult in our building. Thanks to the presence of my Osteoarthritis and Fibromyalgia in her life, one of my precious Nina’s first words was “doctor”, which she would say with an inquisitive tone and point wherever I seemed to be hurting most that day when my pain flared up.

    I used to look at the things I hadn’t been able to do with her and think how much harder it would be on me if she was my own child and I didn’t go home to rest at the end of the day… but that wasn’t just my pain getting in the way. Her real mother missed out on just as much because of college. The healthy woman needed help from the ill. I suppose it all balanced out in the end.

    I hope to have my own children in a couple of years. I expect to need help. It doesn’t scare me as much anymore. After all, I managed to do a lot back then. And I was one of Nina’s favorite people right up until I moved away just after her 6th birthday. If my own kids can cope with my condition at least as well as my neighbor’s daughter did, I don’t think they’ll be afraid of it either.

  • Teri Kennedy

    Wow! What a beautifully written, powerful and inspiring letter for your family! You could literally substitute Lupus for any number of our memberships list of health challenges and it would fit. You have said it all from my perspective. You just have this amazing “Gift” to express to others that have no idea what it is like, how difficult and challenging our lives are and that we sooo appreciate our families for their support as well as our understanding those in our families that may or may not understand or have issues of their own that prevent them from being there for us in some way.
    I commend you to for all that you ARE able to do, or get done in spite of the difficulties that challenge you on a daily basis.
    I feel I am blessed for having met you and became a part of this AMAZING worldwide network of support from BYDLS.com. I do not know what it would be like for me today w/out knowing that there are many, many, others that understand what it is like to be in my body for just a day and how so many take for granted what it means to be healthy!
    Thanks once again for sharing! Have a wonderful holiday and Happy New Year!

  • Birdies

    The only thing that any of us can do, is to live the best life we can. Rejoice in the small accomplishments as if they were climbing Mt. Everest. Rejoice because we keep on breathing. Rejoice that your husband and parents ARE staying with you through thick and thin. Find every thread of pleasure wherever you can. I think that makes us folks who have limited abilities live ever so much more in the present and to appreciate so many more things that others take for granted. There is a Jewish proverb that goes something like:

    Through the weave of the fabric may be dark, somewhere in it is a thread of grace.

    Look more for the grace than for the helplessness. Look more for the grace than for the hopelessness. Claim grace for yourself when you require help. Yes, it is easier to give than to recieve, but if there aren’t receivers out there that are gracious about it, then the giver doesn’t get to experience the blessing. You are a part of the great scheme of things and are important to others recieving blessings.

    I understand oh so well the frustrations, but don’t be afraid to claim grace for yourself when you need it and allow others to bless you with their good deeds. That too is a gift you give them.

  • Thank you Christine for what I think is the most powerful thing I may have ever read. How a chronic illness affects our lives ‘behind the scenes.’ I could relate so deeply to how you feel about your parents, and your husband. As a newlywed myself, I often fear that my Stills Disease will rip our relationship apart. I want to have a child but I wonder how it’s possible since I can’t even care for myself. Unfortunately I’m having one of those christmas seasons that you unfortunately had last year. I’m pretty much bed bound, or in the hospital. I had to watch my husband set up our Christmas tree and it killed me. It shouldn’t be like this, it’s not fair. Let’s continue to hope for a cure to all of our miserable diseases. Again, thank you for putting into words what I could not. You are a blessing to us all.

  • Jojo Cochrane

    Hi Hunni! How very moving! You are a strong loving woman!
    Your story sounds like mine, even down to the being in remission when I met my hubby, but I don’t have lupus I have Crohns! My hubby and me only got 2 years of marriage before I became so ill that this time last year I was preparing to see my last christmas! This year after major surgery I am preparing to enjoy Xmas to the full while I still can!
    I hope that your brother like mine only feels pain for your plight and doesn’t know how to help so has pulled away from you! I have to pull so hard to keep my brother close to me but to this day he won’t speak about my illness! He will bring me things in hospitals but will never ask how I am, I think he’s scared of hearing the worse! I honestly hope you and your brother can get back together!
    And above all I truely hope you have a Great christmas and may 2011 hold big hopes for miracles! x x x x x

  • Nancy

    Thank you, Christine, for sharing. You are truly amazing, & what a lovely person you are….that is why you have had so much support over the years from your loved ones. I wasn’t diagnosed with Lupus until I was in my early 40’s & I can’t even imagine what you went through having to deal with “it” beginning in your teen years…bless your heart. Please do all you can to rid yourself of the guilt….I know that is easier said than done. I wish you & your family love & happiness for this Christmas season & may the New Year bring a cure closer & bring you comfort & relief from your pain. I am giving you all my spoons from Christmas to New Year’s Day, & after that, just let me know if you need more. I am a widow (an old one, too…LOL) & I don’t do anything for the holidays, like shopping, cooking, etc., so I won’t need them…you enjoy them, OK? And, thanks again for your article.

  • Jennifer

    Thank you, Christine, for touching me so deeply. I only just realized 3 days ago that it is never to late to have hope. May the holidays bring you joy and precious memories. 🙂

  • Clair – nunnybear

    Christine, your parents, brother, husband and daughter all love you and are there for you because they love you and want to be there for you. The little one may not realise it yet but she has a more special mummy than other little girls because you risked your own life to have her and as she grows up she will learn the inspiration you give to others with horrible illnesses all over the world. If I could give you a gift for Christmas it would be to remove the guilt you feel. You did not ask for Lupus, nor would you choose to have it if there were a choice involved. Carry on loving your family and be grateful for their love for you. You are blessed, all of you. How many have disabling illnesses and have nobody? May you have more spoons than ever, this christmas and in the new year xx

  • Jennifer

    Just knowing I am not alone feeling the way I do is the best Christmas present anyone has given me. Thank you for writting this! Merry Christmas any many spoons to you!!!

  • I hope you don’t take this the wrong way, Christine, but I think I like what you wrote here ‘better’ then the Spoon Theory. While the Spoon Theory is applicable to chronic illness, this was personal. Way more personal with much more detail. Very moving and touched my heart. Thank you. God bless you and your family abundantly this Christmas.

  • Sherrill

    Christine,
    You are a gift! Thank you for the reminder that we are surrounded by gifts from those who care about us, not just at Christmas, but at every turn during our lives with lupus. Hope this year gives you everything you wish for.

  • zarla

    you are a special lady, i wish you better health.
    xxx

  • Dawn N. Wright

    I hope people take time to read this touching and personal story of the affect lupus has on relationships. Lupus touches so many people in different ways. Thank you again for so eloquently sharing your Christmas wishes for your loved ones. It sounds like you have a very supportive circle, and I’m sure that they (just like you) will take things as they come. There’s no other way to be with lupus! May God continue to bless you and yours on this Christmas and Holiday Season!

  • Beth Hunley

    Love to you Christine…

  • Dana

    Hi – Beautifully written. I understand the last part very much. While I am not in as rough shape, I too have had to let my parents help with my daughter. She’s grown up with illness and knowing that I cannot do all the things a regular mom could. I’m a single parent, so many times that has meant she stays for a week or so at my parents home, calling me everyday to tell me how much she misses me. She’s 9 now, and one of the things everyone tells me about my daughter is how compassionate and caring she is to the people around her. While I am not the ‘perfect’ mom who can bake cookies, and build snowforts, her and I have a wonderful relationship. She understands difficulty and hardship and has been made a better person for it. But most of all she knows love – There is not a day that goes by that we don’t tell one another hundreds of times how much we love one another. When I’m feeling miserable and can barely move, we curl up and watch a movie or read together or just talk for hours. Its made us very close and our relationship is full of warmth. While I would love to just be better – I know that even illness has brought me certain gifts. It has made me prioritize and really consider what’s truly important in life. It has helped me to understand the blessings I do have, and it has helped shaped my daughter into a wonderful young lady. On bad days I hold onto those blessings with both hands. Wishing you all the best for your holiday Christine, and may you always see the wonder and beauty in life! xo

  • Jennifer

    Christine,

    Moving and insprational. You put to words, what I fear, what I hope, what I wish for, and do it beautifully. I hope your Christmas is filled with many spoons… and many blessings this year and many more years to come.

  • susan smith

    Wow, that’s all I can say Christine. What a rough time you have had of it since your early teens. I guess i was fortunate to not “get” lupus until i was in my late 40’s. I was able to do all the things that teens, young adults and adults normally do without the limitations of this dreaded disease. Hearing your story, i can feel your strength and sense your love, and know that you live each day to the fullest. You are truely blessed to have a great, caring husband and a beautiful daughter in your life. God bless you and your family during this beautiful Christmas season. Enjoy each and every moment you can to the fullest. And wishing you a very happy and HEALTHY New Year!