Butterfly Warrior

My Self Esteem

No matter the area of expertise, our achievements and accomplishments in the workplace contribute to our self-image and identity. It’s not surprising that people with lupus, especially soon after being diagnosed, often wonder if their illness will affect their ability to contribute in the workplace.

Many people with lupus are able to continue to work, although they may need to make changes in their work environment. Flexible work hours, job-sharing, and telecommuting may help you to keep working. It may be helpful to begin to make such arrangements soon after you have been diagnosed with lupus.*

 "Many people with lupus are able to continue to work". That fact used as one of the  Facts of the Day during Lupus Awareness month. It seems to have set off a firestorm of controversy for some of us with Lupus. So much so that I understand some people were boycotting  LFA and  a petition to have that wording taken out of the education information that the Lupus Foundation of America provides was started.

 I'll start by saying that  I love my career! It brings me great joy and fills me with a sense of pride and accomplishment daily. Working helped me build self esteem, worth, and maintain a postive attitude.  When I am at work the fact that I have severe Lupus is secondary.  Working helps keep my mind busy, keeps from isolating myself,provides me with a little bit of normal,  and most importantly it keeps me from being wrapped up in "Woe is me and Oh poor me". 

 Working in health care for my entire career; I'm aware that there are a lot of people that choose to focus on the negative aspect of their illness.  Saying things like " I suffer from Lupus" to me brings on negative connotations and brings the person down and keeps them down.   I refuse to say that I suffer from Lupus as I am not suffering from anything in my life. I live with Lupus everyday and I have for almost 17 years.  There are many of us with autoimmune diseases that continue to work everyday. Some of us out of necessity and others out of sheer stubbornness.   I don't criticize nor look down on those who feel they can't work anymore. We each must deal with Lupus in our own way. The point I want to make is that there is more to me than my disease.

 Being diagnosed with Lupus wasn't  reason enough for me to stop working or to stop living. When I began to have complication after complication I fought even harder every day to go to work.  Sometimes going to work was the one thing in my life that I could absolutely control. Don't get me wrong; getting motivated to go to work isn't always easy. But to me and many others with Lupus and assorted autoimmune diseases it's always worth it. 

 

 

 

www.lupus.org*

Summer is Here!

Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare.

Everyone with lupus who is going to be outside for more than a few minutes should use a sunscreen with a sun protection factor(SPF) of at least 30 that blocks both ultraviolet A (UVA) and ultraviolet B (UVB) rays. Sunscreen should be applied thoroughly, especially to your neck, temples, and ears -- areas that are often affected by lupus skin problems.

Wearing proper clothing helps, too, such as broad-brimmed hats, long-sleeved shirts, and long pants. If you spend a large amount of time outdoors, you should wear clothing made of sun-protective fabric. Sunbrellas, which are umbrellas made with sun-protective fabric, are also available.

Since UVB rays are most intense between the hours of 10 a.m. and 4 p.m., you should try to plan your outdoor activities for early in the morning, late in the afternoon, or in the evening. Also be aware that UV rays are stronger at higher altitudes and when they are reflected by snow or water.*

 Summer is the time of year that most everyone loves. Time for travel, BBQ's, parties, weddings, picnics, camping, swimming, friends, and families.  I absolutely love the feel of the sun on my skin, the warmth, and the feeling of freedom it gives me. However it's also the time of year I have to pace myself the most because summer is also outdoor concert season.

I love live music! One of the best feeling in the world is being outside listening to great music, singing along if you know the words, having a drink or two, and enjoying it with people you may have just met.  The atmosphere is awesome at live shows. We are all there for the same reasons; to hear great music and enjoy ourselves.  Some great memories have been made for my daughter and myself at these shows. We've also made some wonderful lifelong friends that we met over our love of live music.

Too much time in the sun is typically when Lupus rears its ugly head. The sun drains me instead of recharging me like it used too.  If I have too much sun exposure; it may be days before I can get out of bed. My scalp breaks out in a scaly rash, my joints and muscles ache, I get chills, fever, and  it makes me very weak.  I have  photosensitivity even with sunscreen and protective clothing.

 I still enjoy the summer, I just dont spend as much time outside as I would truly love too. Whenever I get stubborn I have to remind myself that 10-15 minutes longer in the sun isn't worth the weeks in bed without sun or summer fun if I go into a lupus flare. I miss being able to run, jump, and play but I can see the sun from anywhere. I dont have to be standing out in it to enjoy it!

 Have a save and fun summer- please dont forget to protect yourselves!

  www.lupus.org*  

Minion

  Today we had to put down one of our Shih Tzu babies. Minion Golem Garcia was just 6 months old and full of like until just a few days ago. All of a sudden he wouldn't eat or drink and was in a lot of pain.

 We took him to our Vet and they found kidney failure. Apparently his kidneys didn't develop fully when he was born. He was a ginger (red headed) and so full of mischief. If he was too quiet them we knew he was into something.  He was fearless and there wasn't anything he didn't love.

 He brought us a ton of joy and laughter and we will miss him dearly. We took JoJo, our other Shih Tzu with us to our goodbyes to Minion. He was in so much pain, but he gave us all kisses just like usual.  I held him while he took his last breath.

 We love our pups, they are so much more than companions. They keep us sane and love us unconditionally. I'll miss Minion but I'm so glad he is not in pain or suffering anymore.

 

Gratefuls

 It's time for my gratefuls; gratefuls are just about acknowledging that despite my chronic illness I have many things to be grateful for. When I am having a day like today; with my pain off the charts; I can take inventory of all the great things in my life. Just so I remember that it isn't all bad. 

•  I'm most grateful for my husband and daughter. They keep me on the straight and narrow when I start to veer off into "poor me" land.  
• For our pups, who know just when to make me laugh or to sit in my lap and let me enjoy them.
• For our  support groups; providing support, positive feedback, education, and ideas to others with chronic illnesses. 
• That I have a job and that I can go to work everyday.  
• For my beliefs
• For my friend who buys me lunch when brain fog takes over and I leave home without a credit card or cash
• For music it relieves the stress in way that almost nothing else can
• For all my awesome friends both virtual and real world- you let me post Lupus information on your  pages non stop without every telling me enough is enough! I appreciate you all!

This is but a small list as the list of things I am grateful for can go one forever. If you're having a bad day think about the things that make you happy. Make a list of your gratefuls.

 

 

 

 

 

 

Father's Day

 Father's Day is a day to celebrate the men who do their jobs as father's. It's an extra special day for me to celebrate the man I married and the awesome father to our child.

  We had a pretty typical marriage in the beginning. The first couple of years after I was diagnosed with Lupus not much changed. When I began to get sicker, my husband took on a lot more. He started to make dinner and take on more of the household chores. He learned to comb our daughter's hair and get her ready for school. He also had to take care of me as well.

  For 2 weeks after he got our daughter ready for school each day he drove 2 hours from New Mexico to Texas to see me in the hospitial. He would then drive back to New Mexico to get our daughter from school in the afternoons.  When he saw that my medical needs would be met better in Lubbock, he found a job here and drove back and forth daily until we could all move together.

 Living with Lupus is not easy, but then neither is living with someone who has Lupus. I'm a very lucky woman and I don't ever want to take that for granted.  He may not always understand what I'm going thru but he's always there for me. He doesn't treat me like an invalid and he will push me to if I need it.

 I didn't grow up with a father and watching him with our daughter; I know what I missed out on. One day really isn't enough to celebrate the men who take the title of Father, Dad, or Daddy seriously. I'm proud to be married to one of those men.

 Happy Father's Day Honey! We honestly wouldn't be the same without you!

 

 I need to add that you've made it hard for any man who hopes to marry our daughter. This man will have a lot to live up too as you treat me like the Queen of the Universe and our baby girl is the most precious girl in the world. The example you've set for her on how a real man is supposed to be. I pray everyday that she is able to find someone that has what we have. We aren't perfect put we are perfect for each other.

 

Understanding

 I've written extensively about what having Lupus is like; the confusion, ups and downs, uncertainty of never knowing what each day will bring us.  Now think of what it would be like to be the spouse, parent, or child of someone with Lupus. How do we explain Lupus to the people we love?  How do we expect them to understand what we barely understand ourselves? 

   Lupus doesn't just effect me it effects my whole family. Every new diagnosis, setback, treatment, physician, medication, and temper tantrum is felt by my whole family. To have fallen in love and married  a young, vibrant, fun-loving person and watch them change over time and not know why had very frustrating for my husband. It was equally frustrating for the both of us when he would  ask me "Whats wrong?" and I couldn't answer him. I didn't know how explain the problems I was having. How do you explain the being so tired that no amount of sleep or rest will help? Back them I didn't have the words to describe what I was feeling.

 My daughter was just going to kindergarten when I was diagnosed. I can't imagine what it would be like to be that young and have to wonder how sick your Mommy is and worry that she is dying.  At 6 years old she could navigate her way thru one of the largest hospitals in West Texas by herself. She saw me in the hospital more than at home.  This was my daughter's life from Kindergarten thru 6th grade. By the time she was in junior high not only did she have the usual worries; acne, clothes, friends and being social; she would also hang out with me during chemotherapy treatments, blood transfusions, IV iron infusions, and various other treatments.

 We talk a lot about wanting the people in our lives to supports us and to understand us, but we need to realize it isn't easy for them either. Our families need our support as much as we need theirs . It takes time and patience on all our parts to make relationships work. Don't let Lupus take your family away, fight for it.

Living a Full Life

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks often for many years.Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.*

     It's very easy to get wrapped up in having Lupus, being sick and forgetting about everything else. That would be the definition of a half life and that isn't how I choose to live my life. I have had severe Lupus for 17 years , my complications from Lupus are also severe. Many of the dreams and goals I had for myself had to be rethought.It could have broken me but instead I decided it was time for new dreams and goals instead. 
 Going to nursing school was number the one on my priority list 13 years ago. Once I was started chemotherapy, I knew it wouldn't be possible for me to become the nurse I would want to be. I would not be able to work in the E.R. since my immune system was/is suppressed and that put me at risk for all germs and infections that come thru the hospitals. It made me sad but I didn't dwell on it

I'm now doing things that I never would have imagined. I'm the Coding Supervisor for a  Nurse Managed Practice. I also get to teach coding to Nurse Practitioner students. I love my job even with the stress it can bring.   I don't regret having to change my goals. Just because my life isn't exactly as I imagined it does not make it any less enjoyable.

 Lupus, is something that I will always have. However it would be a disservice; not only to me but also to my family to live a half live. I don't want to think about the things that I could have done or should have done. I want to remember the things I have done and make plans to do more. Life is what we make of it. Mine is made of more than Lupus.

Choose Life

 Many things about me have changed since I was diagnosed with Lupus. My energy, stamina, and spontaneity are a few of the things that were definitely impacted negatively by this diagnosis.  I'd love to be able to spend time out in the sun without worrying about flaring. I would like to do things that I used to take for granted like, cooking dinner after work, cleaning house, laundry; simple every day things.  The changes I've had to make since the diagnosis make me sad if I focus on how I used to live. It becomes an endless cycle of feeling sorry for myself and that just isn't me.

However I deliberately choose to focus on the positives of my life. Because there are many more things that I'll never ever give up, despite having Lupus.I love my job and I fight to keep it everyday. I love working as it provides me with a sense of accomplishment and fufulling. It also provides me with the ability to fund my shoe habit. Living, loving, my family, shopping, socializing, going to concerts, and enjoying my life. I don't worry about what others think of me, their thoughts and feelings aren't my concern. I live my life the best way that I can; admittedly at times its with Lupus its challenging, but its the only life I have. 

 Despite Lupus I will not give up on life. I will live everyday the best way I know how. I will not become half a person because I have a disease. I've lived thru hell with Lupus, 2 major surgeries, chemotherapy, and a host of other treatments. I'm still here doing the same things I've always done.

 Don't let Lupus or any other Chronic Illness become an excuse to feel sorry for yourself and to let life pass you by. It isn't fair to you, your family, or to those who struggle daily to have a sense of normal. Don't be afraid to live and don't let Lupus be the only thing in your life. We are far stronger than that.

   

Being Selfish

 As a rule most women I know are overachievers. We work, cook, clean, laundry, pick up and drop off children, grocery shop, help with homework, etc. Even with Lupus most of us still are working in Wonder Women mode.

 All women need to learn to take some time for themselves; rest and rejuvenation time. I think it is especially true for women with chronic illness. We have to learn to be selfish and take care of ourselves sometimes. I promise the world doesn't stop it keeps right on turning  while you rest.

 Pushing yourself to the brink of exhaustion and beyond doesn't do you or Lupus any good. Listen to the messages your body gives you, if you don't you run the risk of a full-fledged flare. The more you wear yourself down the worse Lupus and accompanying symptoms can get. When I go over do it I start to feel a bit of depression because laundry isn't done, the house is a mess, and my husband has to cook dinner...again. True to form I'll start a load of laundry and I may even get it to the dryer. But it stays there until for days because I'm so exhausted I can't go get them out or worse I leave them in the washer and have to rewash them. I feel worse because I can't do something simple like put clothes in the dryer. 

 All of these things compound and build off each other, then it turns into a vicious circle. I took a couple of weekends and did nothing. This past weekend I was able to shampoo carpets, do laundry, clean the inside of my car, and tackle the kitchen. Since I was well rested I don't feel exhausted from all the activity. Its a wonderful feeling.

Take some time and be selfish. Don't make dinner; have sandwiches and soup. Leave laundry for a few days and let your body take the break it needs.  You'll feel better and then you can get started on your quest to take over the world again.

 

Bedtime Blues

Getting the proper amount of rest is extremely important for people with lupus, especially during periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements, at least seven hours of sleep a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker, which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.*

 Sleep is something everyone has a hard time trying to get enough of. When you have a chronic illness its doubly important to be able to get enough rest. I find it hard to achieve the 8 hours of sleep we are supposed to have. When I am feeling well, my brain doesn't want to shutdown. I can survive on 6 or so hours a night during the week. I find that I want to do everything I can while I can. This isn't always the best approach; especially if I want to continue to feel well. I try to practice good sleep hygiene like the experts say, have a set bedtime every night. Use your bed for sex and/or sleep; not eating or watching television. 

During a bad flare it seems I never seem to get enough sleep. Its as if I'm unconscious when I lay down. While flaring I can sleep upwards of 15 hours straight and it still wont be enough. I think its because our bodies need time to rest and regenerate. Like everything else with Lupus, we do not get a choice in the matter.

 During milder flares, the fatigue is like walking thru the deep end of a swimming pool with combat boots and a parka. You're not getting anywhere fast or easy. I wont drive during these times, my reaction time like everything else is too slow and I do not want to hurt anyone not myself. I still get where I need to go, I just have someone else do the driving.

 The bottom line is sleep while you can and when you can. During a flare you don't have to prove anything to anyone at all. Get yourself rested so you can bounce back from the flare. Sleep is important and at times it seems like we just don't get enough.

 

 

 

www.lupus.org *

Worth The Challenge

 

 

 I have a chronic illness, it makes life challenging to say the least . However it doesn't making living impossible.  I feel that I can do anything I put my mind too.

I've come back from femoral-politeal bypass surgery, pericarditis, chemotherapy, and Class 4 nephritis. When others recommended I apply for disability and enjoy the life I have left I didn't listen.  With the support of my husband and daughter, I perseverved and came back. 

 I plan to live a full, exciting, and semi-normal life. I want to enjoy my life and do the things that make me happy.  It makes me happy to go to work and earn a living. It makes me happy to not stay home and think about Lupus everyday. It makes me happy to be productive.

I respect the limitations that I have with Lupus; I can't do everything I want. I also can't do things as fast as I would like, but the point is I can still do them.  I'm not a why me nor a woe is me kind of person. I value life and I am not going to let it pass me by. I'm gonna live it with as much gusto as I can.

 Life with Lupus is not easy, it can be challenging and a struggle. But it is a challenge worth taking on. I refuse to give up, I have too much to live for.  There is more to me than Lupus.  

   

Keep Fighting

 Lupus Awareness Month is over until next year. Unfortunately it isn't that easy for me; I still have Lupus. For the other 1.5 million people out there like me, nothing has changed. We still live with this illness.

I have struggled over writing this for the last couple of days. This past month it has been my goal to help our friends, loved ones, acquaintances, and complete strangers understand a bit more what we deal with on  a daily basis. I hope I've been able to accomplish that goal.I have never wanted sympathy or pity; I would like empathy and understanding.

 I want my fellow Lupus warriors to see that we are NOT a burden. Lupus is the burden that we carry. One of the other important things I wanted to get across is that our lives aren't over when we are diagnosed. Our lives do change when we are diagnosed; there is no denying that. We may not be able to the same things we once were but we are still able to live full lives.

 Even though we have the same disease, it is still different for all of us. I can tell you from my perspective, I have severe Lupus and I still work and play. I need to rest a lot more than I did before I was diagnosed, but I can still be me. When I go thru a rough patch, I have my family, friends, and extended family to lean on. Find your support system, if there isn't one near you, start one.  Don't go thru life feeling as if you don't matter, because you do.

Don't let Lupus take over your life, it can share but it can't have it all. Living with Lupus takes unimaginable strength and I'm proud of us all for being able to show our strength. Keep up the fight.