Butterfly Warrior

The Missing Link

What causes Lupus? No one knows what causes lupus. Scientists think that people are born with the genes to develop lupus and that something brings on or "triggers" the disease and symptoms. However, a combination of genetics (heredity), environment, and hormones is involved.*

 What causes Lupus is one of those questions that I don't believe can ever be answered in a way that satisfies everyone. Over the last year; in our support group; we've posed the question many different times. Certainly there are commonalities that quite a few of us share: problems with sun exposure, allergies to sulfa drugs, at least one relative with an auto-immune disease, infections, giving birth, and stress.

 Unfortunately there are just as many triggers that are unique to us as well: exposure to chemicals in rural farming areas, chemical plants in cities, drug induced Lupus, and injuries.

 We've conducted our own informal polls on mixed racial heritages, physical and sexual abuse, childhood trauma, adult trauma, and our age at the time of diagnosis.  Needless to say we've been unable to come up with any sort of consensus on Lupus.

 In my heart I believe that each persons Lupus diagnosis may be unique to the individual. What may cause one person to flare may not have the same effect on anyone else. However the more questions you can ask of those around you with Lupus, the more information you may find that will help in narrowing down some of the possible causes.

 For instance, I always believed myself to be healthy until shortly after the birth of my daughter. In group we'd been discussing reactions to the sun, and I remembered that I've had issues with the sun since I was very young. I remember not being able to go to the pool with my summer camp due to several instances of blacking out and nose bleeds. These came after prolonged exposure when I was just 5 and 6 years of age. I'm allergic to penicillin, there is a family history of auto-immune diseases, and I was hospitalized pretty young due to an illness. Like many African-Americans, there is a mixed racial background in my family also.

 As you can see the possibilities of what causes Lupus are endless. I am not sure if we'll ever know the cause for each and every one of us; however if the scientist can narrow it down it may help in finding a cure. Meanwhile we'll keep researching and asking questions. You never know; we might find our missing link.

 

 

 

 

 

 

 

 

www.lupus.org *

 

All In It Together

 There's no doubt about it Lupus is a very tough disease. It touches you physically, emotionally, and spiritually. When I diagnosed initially I didn't want to be involved in any support groups. I had my family and that along with my stubborn, strong-willed personality. We've always been to handle whatever life threw at us.

 In the past couple of years my family and I have gotten more involved with the Lupus Community. We started with the Annual Lupus walk, then we joined the local support group. That's when I had an "aha" moment. This support was different because there were other people who knew what I was going thru. They knew what it meant to be fatigued after a great nights sleep and to have to take multiple medicines several times a day.

 This past year I joined an online support group and I will admit I was somewhat skeptical. Will people open up to complete strangers? Is it going to be supportive or just a long gripe session?  It worked out better than I expected because yes people will open up to complete strangers. After all we do have something in common.  It is very supportive atmosphere, the members have really opened their hearts to and minds to each other. We shared treatments that have worked for us, medications that have failed to work. Tips for exercise, meals, cleaning, etc. We do have to take the good with the bad, there's nothing wrong with a gripe or complaint but we are very careful to not let our posts turn into long gripe sessions. It can turn negative and that doesn't help anyone.  My husband and daughter have joined the online support group as well. Now they both have a better understanding and different perspective of what I live thru every day.

  Having this kind of support has changed me, I no longer feel like I have to deny when I am in pain or when I don't feel well. I don't have to be ashamed when Lupus gets the best of me for that moment. I began blogging about my experiences, my hope is that the next person doesn't have to learn everything the hard way like I did. 

 The bottom line for me is, if you don't have support then you should find some whether its local or virtual. If you're in the right group with the right frame of mind, the knowledge, friends, and caring you'll receive are out of this world. If you don't know if there's a support group in your area, the link below is for LFA. They can help you find a support group or start one if you're interested.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_researchbasic.aspx?articleid=864&zoneid=32

 

DIY Medicine

  A few years ago I had pain in my left side that was off the charts. I have a high pain tolerance, so I ignored it for a few days. Of course it continued to get worse. I finally gave in and let my husband take me to the ER. As soon as I disclosed my medical history, I knew that they weren't going to look very hard for my issue. They did a CT (cat scan) of my abdomen and said "Its not your appendix so it must be Lupus. Follow up with your Doctor." The pain didn't get any better and a few days later my husband made me see my PCP. When it was all said and done, I had an ovarian cyst that had twisted and pinched off.

 Because of the experiences that many of us with Lupus have had with the ER and urgent care clinics we sometimes chose to consult our computers when we get new symptoms, pains, and aches. There are plenty of search engines out there, Dr. Google, WebMD, Right Diagnosis, to name a few of them. They are chocked full of information that can help or hurt in our search to find out what the problem is.  

According to a recent study, one in four British women has misdiagnosed themselves on the Internet. Researchers found that women with real health concerns are twice as likely to go online for advice than they are to ask a doctor, their friends, or even their mothers, especially where embarrassing symptoms are involved. In that same study not only did they misdiagnose themselves, the women also bought medicines based on the diagnosis and tried to treat themselves.*

 To test the study I put in a very simple symptom a search engine; peeing at night. The following is a list of the Top 10 causes the search gave me:

Enlarged prostate

Benign prostate hypertrophy

Prostate cancer

Prostate disorders

Bladder disorder

Irritable bladder

Kidney failure

Chronic kidney failure  

Diabetes

Hyperparathyroidism

  The search parameters I used were pretty broad, but I was quite surprised that my  top 4 were all prostate related. In all fairness I didn't enter that I was female, but it produced the list without asking me to clarify or add any other information. The site has links to home testing, OTC (over-the-counter) medicines, treatments, etc. but I didn't find a place to enter that I have Lupus.  The causes I was given are all quite serious diseases. But the search engine doesn't play 20 questions like my physician does. The cause of my nocturia (night urination) is really very simple, I drink 100+ ounces of water a day.  Even though I'm done drinking water by 6:30 pm I still go to the restroom quite frequently.

  DIY medicine can help narrow down the list of possibilities for new aches and pains, however it can be very misleading and dangerous also. Before a proper diagnosis can be made tests are typically needed. Make sure you're consulting your physician(s) prior to starting any medicines that have not been prescribed by them.

 

 

 

http://www.zdnet.com/blog/health/dr-google-misdiagnoses-one-out-of-four-women/478 *

 

 

 

 

 

 

 

 

 

 

 

 

1.5 Million Faces

Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. The diagnosis of lupus is based off of a combination of physical symptoms and laboratory results and for most people is not a one time diagnosis. More often than not it is a diagnosis that evolves over time either towards more certainty that a person does or does not meet the criteria for a diagnosis of lupus.*

We are doctors, wives, singers, mothers, fathers,actors, lawyers, writers, artists, husbands, brothers, sisters, friends, grandmothers, grandfathers, children, bankers, lovers, nurses, aunts, uncles, and cousins. We come from all walks of life with one thing in common: We are the 1.5 million faces of Lupus.

Lupus is a very hard disease to have. It's  hard to get diagnosed, it's hard to treat, and it's hard to live with. The medications and treatments we take help us and harm us simultaneously. One day we are fine, the next we are bedridden. Sometimes we feel like we are burdens to our loved ones, it's enough to make you think you're going crazy.

We aren't crazy and we are not burdens. Lupus is the burden that we carry.  Lupus has forced us to give up things we love like the Sun, walking, running, dancing, and spontaneity is out of the question.  We've had to learn a  new "normal". It isn't always easy to reconcile the new you with the old you.  We would like the same things as everyone else; acceptance and understanding.

We want and need one thing: a cure.

www.lupus.org *

Fragile strength

 

 

 There comes a time in everyones life when being strong isn't an option. When you reach your breaking point and you feel like you just can't deal with anything else.  You may feel pretty fragile at that moment in time.  Fragile doesn't equal weakness. Some of the most fragile things in world are stronger than steel.

  I do not consider myself a fragile person, I'm a fighter and very strong-willed. I hold my feelings in and I rarely shed tears. Having dealt with a lot in the first 17 years of my life, I excel at being strong under pressure. I always expect the unexpected.  However the day I was officially diagnosed with Lupus I cried like a little girl. Lupus didn't have a physical manifestation for me to hit, kick, or bite. So I cried instead. Those tears helped me get it out of my system. 

 The next time I shed tears over Lupus was in Oct. 1998, when I couldn't walk. My first trip to the Cardiothoracic Surgeon he didn't have an answer for me, other than I needed to lose weight. These tears were from frustration. I couldn't WALK! How in the heck was I going to lose weight? After a venous doppler was done later that day; a clot was found. Then I shed tears of joy because there was a real answer!  

  In May 2000, I went to my rheumatology appointment alone, it was supposed to be just a follow-up. My doctor told my I had nephritis. I didn't cry for me this time, I cried for my family. Everything had been going so well and now I had to tell them that we were in for another long hard road.

 We all deal with adversity differently. Some of us quietly. Some need support from family and friends. There is not wrong or right way, just the way that works for you. 

  

 

Laugh it up!

  

• Laughter relaxes the whole body. A good, hearty laugh relieves physical tension and stress, leaving your muscles relaxed for up to 45 minutes after.
• Laughter boosts the immune system. Laughter decreases stress hormones and increases immune cells and infection-fighting antibodies, thus improving your resistance to disease.
• Laughter triggers the release of endorphins, the body’s natural feel-good chemicals. Endorphins promote an overall sense of well-being and can even temporarily relieve pain.
• Laughter protects the heart. Laughter improves the function of blood vessels and increases blood flow, which can help protect you against a heart attack and other cardiovascular problems. *

 

 

 My sense of humor can be risque, a little morbid,inappropriate, and really goofy. I laugh a lot each day and truthfully I am usually laughing at myself. When I get nervous I laugh a lot. My husband bought me a car, when our daughter was a few months old. I had the car only a couple of weeks , when hit another car and got a small dent in the front fender. I was trying hard to tell my husband what happened and I kept laughing. I finally had to show him the dent, to say that he was upset is an understatement.  The more I laughed the madder he got, but I couldn't stop laughing.

  My husband had to travel for work for a couple of months. We had just moved and didn't know anyone. Our daughter was 3 years old and missing her Daddy, so it was my bright idea to use eyeliner to paint on goatees like Daddy. We took a nap, and then went to the store. People stared at us and we got a lot of double takes, I didn't know why until we got home and I looked in the mirror. I saw we still had those dang goatees painted on!

  When my doctors found the arterial clot, I had to register at the hospital for surgery. The front desk person was going over the forms with us and asking if we had any religious preferences. I said "Yes, we require a live chicken, candles, and a knife". She stopped in the middle of her recitation of this long form and stared. I was a straight-faced as I could be but it only lasted for a few seconds. My husband and I laughed at the look on her face. She didn't think it was funny.  I've gone to work with my clothes on inside out, backwards, and different colored eyeshadow on each eye. I forget pay attention to the little details and because of that I get to laugh at myself pretty much everyday.

  Live with Lupus is serious, but it doesn't have to be all serious all the time. I am allowed to laugh, have fun, and live! It doesn't make me anymore or any less sick, it just makes me happy! Find something to laugh at or someone to laugh with today. It will make you feel so much better.

 

 

http://www.helpguide.org/life/humor_laughter_health.html *

A Day In the Life

 My alarm goes off at 5:15 am each weekday morning. There are times that getting out of bed is easy, but if I'm honest with myself most times its a struggle. 

Next on the agenda is a shower. A nice hot steamy shower to help ease the aches in my joints and muscles. If it is a particularly bad morning I will need to rest after my shower.  Getting dressed, packing breakfast and lunch, feeding the puppies, and making sure I don't forget to bring my medications with me fill the rest of my morning.

  Getting ready for work is a pretty simple task. My husband can do it in 30 minutes or less. It takes me 3 hours to accomplish it. This is a morning in my life.  I push myself to do this everyday because I want more than Lupus to fill my days. I need to work while I am capable, I need to feel useful, I need to feel like I am making a difference.  The path I've chosen to walk with Lupus isn't easy, but it is the one for me.

  I am not complaining nor am I asking for sympathy.  What I want is to spread awareness and understanding.

Too Hot To Trot

 Cyclophosphamide (Cytoxan®) can cause premature menopause or temporary estrogen loss. Because estrogen protects bones,anything that speeds menopause or deprives your body of estrogen increases the risk of bone density loss.*

 

I have been cold-natured my entire life. Yes,  I'm that person who has a heater under their desk going year round. I have a several sweaters in my office, in the car, and a blanket or throw in every room in my house. This past year I began having hot-flashes. The first few times they were kind of cute, something novel since I'd never experienced them before. It didn't take long for the "cute" to wear off and the "Oh My Gosh" to kick in.

 Since I am too young for menopause, I started researching to see what in the world was happening to me now. According to what I've read and discussed with my doctor, Cytoxan, the chemotherapy drug I took for 3 years can cause premature menopause. As Murphy's Law would have it, I am unable to take any HRT (hormone replacement therapy) because of the antiphospholipid syndrome. A lot of the homeopathic remedies aren't options for me either. I am not sure how they'd affect my coumadin dosage and I am not willing to find out.

 For now I work around it, my heater is on until I feel a hot flash coming. Then I grab a freezer pack and put it on the back of my neck. As soon as I am cold again the heater comes back on. At night I have several fans going in our bedroom and a giant comforter. When the flash comes if take the blanket off until I feel cold again. For now its the only solution that I have since estrogen replacements are not an option for me.

 It isn't perfect but it works for me.

 

 

 

 

 

 

 

www.lupus.org *

How Long Do I Have?

 

Lupus is not a universally fatal disease. In fact, today with close follow-up and treatment, 80-90% of the people with lupus can expect to live a normal life span. Lupus does vary in intensity and degree, however, and there are people who have a mild case, there are those who have a moderate case and there are some who have a severe case of lupus, which tends to be more difficult to treat and bring under control. For people who have a severe flare-up, there is a greater chance that their lupus may be life-threatening. We know that some people do die of this disease and because of that we have a tremendous amount of respect for the potential of this disease. However, the majority of people living with lupus today can expect to live a normal lifespan. People frequently read in the literature that, 80-90% of people with lupus live for more than 10 years. Unfortunately, this is often misinterpreted as people with lupus live for only 10 years.*

 "How long do I have?" This was one question I never thought to ask after being diagnosed, it really never crossed my mind. Its not that I think I'm invincible, its because I am a fighter.  I've never been the type of person who just lets things happen to me or let the situation control me. Letting things ride isn't something I'm good at. 

For me, this outlook on life started very early on.  There was a time that I had absolutely no control over my situation, surroundings, or anything else. I can't say when it happened but something in me said "No more".  I decided that I needed to make my own fate not the one that was being handed to me.

 My approach to Lupus has been exactly the same, tell me what I can't do and I'll show you that you're dead wrong. I've been told for many years due to the severity of my Lupus that I shouldn't work. I should apply for disability and stay home.  Why? Yes there are times when my body says "No way sister, not today", but for the most part if I can move I am going to work.  Admittedly there have been times when I've made serious errors in judgement when it comes to going back to work to soon from surgeries or after a 4 hour chemo treatment.  Thankfully those times worked out without to much damage to being done to me in the long run.

   "How long do I have?" , is still not a question I will ever ask. I don't want to spend my life living for the day that my number is up. It would definitely have a negative impact on how I live my life and how I feel about life.  I feel up to this point I live with a purpose and a zest for life. All life is finite, I could walk out the door and get hit by a bus or I can live another 40 years.

  None of us know, whether we have Lupus or not,  what is in the cards for us. I never want to waste a moment of  life thinking about how short my life could be. Even when I am unable to move, I can still interact with my family, read, listen to music, and talk to my friends around the world. Its the quality of life not the quantity that makes a difference.

 

 

www.lupus.org Coping with Lupus*

31 Days Isn't Enough

 May, as most of you may know is Lupus Awareness Month. I've been doing my part along with all Lupus survivors, caregivers, and loved ones to spead awareness. I'm posting 2 blogs per day, getting my co workers involved with the National LFA campaign, and going to our local Lupus Support group event. Face Book has been an extremely useful tool, our Support Group members are posting Lupus Facts on their pages, as well as  having a fundraiser on a  Face Book page.

  At the beginning of the month, I had a Rheumatology appointment. One of the phlebotomists completed my purple dress, I thanked her and told her that I was representing Lupus Awareness. She said "Oh is that today?" I was shocked! How could she not know? She works in an office where she would work with  100's of Lupus patients a week, how can anyone in that environment not know? I let her know that it wasn't just that day, but the entire month. I noticed that there weren't any signs up in the office regarding Awareness either. I'm sad that they couldn't take a few moments to tack up a poster.

  Last night at our local POP (Put On Purple) event, one of the City Councilmen attended our event. He presented us with a special proclamation- the Mayor and City Council made May 18th Lupus Awareness Day in Lubbock, TX. That was pretty awesome! Hopefully next year we can plan a City wide event to get the word out. All-in-all I have been very happy with the events and participation that I've seen and been involved in. I'm proud of the attention and interest that we've been getting. 

 One thing to remember, when May is over I'll still have Lupus. I will still do my best to continue educating, advocate,  and spreading Awareness. Thirty-one days just isn't enough.

Bone Health

 Studies have found an increase in bone loss and fracture in individuals with SLE. In fact, women with lupus may be nearly five times more likely to experience a fracture from osteoporosis. Individuals with lupus are at increased risk for osteoporosis for many reasons. To begin with, the glucocorticoid medications often prescribed to treat SLE can trigger significant bone loss.

In addition, pain and fatigue caused by the disease can result in inactivity, further increasing osteoporosis risk. Studies also show that bone loss in lupus may occur as a direct result of the disease. Of concern is the fact that 90 percent of the individuals affected with lupus are women, a group already at increased osteoporosis risk.

 

Osteoporosis is a disease in which bones become fragile and are more likely to break. The areas most often affected are your spine, hip, and wrist. The word "osteoporosis" means porous (porus) bone (osteo). Bones are a living tissue, constantly changing and being renewed. This takes place in two stages: the breakdown of old bone cells, and the forming of new bone cells. During the breakdown process, special cells become active on the surfaces of the bones and create small cavities. This is followed by bone formation, during which bone-building cells fill the cavities with new bone. If the bone that is removed is completely replaced, your bones will remain strong. In osteoporosis, too much bone is removed and/or too little bone is formed. This process leads to a loss in the amount and strength of bone.

When you have lupus you are at risk for osteoporosis for many reasons:

• lupus itself is a risk factor

However, these factors also increase osteoporosis risk:

• having a small-boned and thin body type, whether you are female or male

If you have two or more of these risk factors, talk to your doctor about having your bone mineral density tested. In many cases, osteoporosis can be prevented if proper measures are taken when warning signs first appear. *

 

If you are currently on a regime that includes prednisone or other steroids please make sure you have a bone density test done regularly. I've been on steroids for 16 years. I had a bone density done 10 years ago, in my mind since it was okay I wouldn't need another one until I was older. I had another done a few months ago due to severe back pain and the fact that I've been on steroids for so long. My PCP was very worried about the damage to my bones from the steroids. The results stated that I have a 30% chance of a bone fracture. Fracture? I'm only 41 years old, still not old enough to worry about fractures and osteoporosis, in my mind.

 But now its a very real possibility. I've added Calcium and Vitamin D twice a day to my Lupus cocktail(medications), I am also trying to become more active in order to strengthen my bones. Obviously not an easy thing to do with Lupus, my family and I went to the park yesterday with our dogs. I am laid up on the couch with a swollen knee, very bad back pain, and I am so fatigued I barely have the energy to get up and go to the restroom. This is one of the joys of living with Lupus, for every good day we get 3 bad ones in return.

  What I've learned is no matter your age, if you are taking steroids please ask for a bone density test. After the results of the test your physician will let you know if it should be done annually or not.  If lack of insurance is a factor check with County Hospitals and/or University Hospitals, they usually offer the services at a reduced rate and they base it on income. Sometimes they do studies for various reasons and you can get the density test done at no cost to you.

 Dont wait to "older" to get it done. Be proactive about your bone health.

 

 

 

www.lupus.org*

Trapped

 Everyday of your life you get up and get going. You move with a purpose. You work , drop the kids off, cook, clean, go to the gym. Have date night with your husband and girls night out with your friends and then suddenly you can't anymore. How would you feel?

  Things have changed... Now there are days that you can barely get out of bed. Now you have to make a choice cook dinner or clean house?

You have to take a nap to have enough energy to cook dinner. How would you feel? Intimacy with your partner changes as well..if you aren't prepared it can leave you fatigued and sore. How would you feel?

I can tell you how I feel..sometimes trapped..like I can't keep up with everything around me. Sometimes depressed and anxious... Lupus changes every aspect in your life EVERY aspect of your life. Depression isn't a joke or something that can be scoffed at. It needs to be treated just as your medical illness are.

 Remember Lupus changes everything .....that it isn't anything to be ashamed of.  We all cope the
 best way we can. One foot in front of the other. One step at a time.

Stress Monster

 

   Stress comes in all different shapes and sizes. Sometimes the least little things sets us off, like getting cut off in traffic. Being in the 10 items or less line behind the person with 25 items. Unexpected meetings at work, coworkers calling in, toothpaste not squeezed at the bottom, a swallow of milk left in the fridge, listening to a negative friend go on and on about whatever issue they have at that moment,being sick,  and forgetting to set the coffee maker at night.

  Dealing with stressful situations is a normal everyday part of life for pretty much everyone. When they become to much or we have stress overload it can become dangerous. For some of us stress can have a physical manifestation, it can raise blood pressure, cause palpitations, anxiety, and a Lupus flare. Since my intital diagnosis, I've always been told to "reduce" my stress. I personally am not sure how to become totally stress-free, but I've taken many steps in order to try to keep any additional stressors out of my life.

 A couple of years ago I began having panic attacks; they consisted of shortness of breath, accelerated heart rate, nervousness, insomnia, and feeling like the world was caving in around me.  I also got very angry and mean. I would go off at the drop of a hat and would make my co workers cry from the things I said to them. To top it off I was also in a horrible flare and was facing another round of chemotherapy again. It was too much for me to handle alone anymore.

  During a routine visit with my PCP, I broke down crying. I'm a very strong person, and crying isn't something I normally do. I was at my wits end, I was going to lose my job if I didn't get myself under control and my family wasn't very happy with me either. My doctor gave me Buspar to help with the anxiety and panic. I also went to anger management and learned to some breathing techniques to get myself under control when things get to be to much.

 What I learned about myself is that I have to stop trying to fix other people. I need to stop taking on other peoples stress and situations like they were mine. I am not responsible for the world. I still offer advice and help when I can. The difference is I no longer take it personal when they don't take my advice and I don't try to force my solutions on them. If person(s) don't care enough about their own situation to change it, then it isn't my place to try to force them to care.

 My family, health, and job are very important to me. Stress is a part of life but I no longer let it take over and run free.  The link is for a breathing exercise to help during stressful times.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_community.aspx?articleid=494&zoneid=91

 

Eat to live

There is no special diet for lupus, despite the numerous claims on the Internet and in various books and other publications. In general, you should try to eat a nutritious, well-balanced, and varied diet that contains plenty of fresh fruits and vegetables, whole grains, moderate amounts of meats, poultry, and oily fish, as fish oil has been found to help reduce inflammation. Omega-3 fatty acids found in oily fish appear to decrease the risk of coronary artery disease and may also protect against irregular heartbeats and help lower blood pressure. For these reasons, omega-3 fatty acids are important for women with lupus, who are at a 5-10-fold higher risk for heart disease than the general population.*

 

 Something that is completely universal to people with and without Lupus is how to lose weight. I am now in my 40s and I am really concerned about the increased risk for heart disease in someone who has Lupus. I am certainly in the danger zone due to the long-term steroid use and hypertension due to nephritis. Exercise is a very important tool for losing weight. Walking on a treadmill or at the park if I can go early enough to avoid the sun. Water aerobics is also highly recommended for those of us with joint pain issues.

  I've looked at the ever popular cutting out carbs and increasing protein diets. These types of diets scare me quite a bit; the increase of animal proteins in someone who has severe kidney disease can't be a great idea. Also in trying to combat heart disease I worry about the increase in my cholesterol from all the meats.

 Several of my friends have decided to go gluten free or GF and organic. I'm happy for them and I truly hope the lifestyle change works for them. I looked at the list of things that I wouldn't be able to eat and decided that at this time it just isn't feasible  nor cost effective for me or my family.  I am not particularly interested in being a vegetarian or vegan. I applaud those who can give up animal proteins completely. However I'm not one of them. I prefer poultry to red meat, but I like to have options for meals. 

  I have a friend who is a Dietitian, and she's heard some others in her profession say "If it tastes good then you can't have it", that's no way to live. I don't know about anyone else but the minute something is restricted the more I want it and the quicker I will wind up cheating.

  To my way of thinking, we shouldn't have to give up everything that tastes good.  Moderatation is going to have to be my key to success. I also try really hard to not use the word diet. Diets are temporary, I call it a lifestyle change.  I've found a lifestyle change that works for not only me, but my family as well. We fell off the wagon over the Holidays and we've had trouble climbing back on.  I've got my goal set and hope to be able to report in a few months that I've reached it.

Always remember to consult with your doctor before beginning diets and exercising. Be sure you're not harming yourself in the process of getting healthy.

 www.lupus.org*

Vanity or Control

    When I was diagnosed with Class IV nephritis, the first step in my treatment was to increase my steroids to 100mgs daily. The original way the instructions read were for me to take 50mgs twice a day. After about 2 weeks of no sleep I was at my wits end. Then the side effects kicked in.

  My head was the size of 2 basketball, I was hungry all the time,  I gained about 50 lbs and got diagnosed with steriod-induced diabetes. But thats not what threw me over the edge. The kicker was when my face, chest, and back were covered with cystic acne.  I had never felt more unattractive in my life.

   I have never cared what others thought of me until that time in my life. I became very self-conscious and somewhat ashamed of my appearance. I wanted to hide from everyone. Every time I felt myself starting to withdraw I pushed myself out there more.

 Sadly I never mentioned this to my rheumatologist. I thought he would think I was vain, silly, and whiney.  I mean I was getting ready to start chemo and here I was worried about zits?  I went to my PCP and her nurse took pity on me. Margaret was her name. She gave me a prescription for benzacline, it used for acne.

 Gradually it helped clear my face, chest, and back up. I also got permission to take the entire dose of steriods during the morning so I could sleep.  This may seem silly to anyone who hasn't gone thru it but its real.  During a flare our bodies are completely out of control in ways that you just can't imagine. There is little I could do about nephritis, diabetes, and weight gain at that moment. But with the help of a wonderful insightful nurse I got a little control back. I got a piece of me back.

Working For Normal

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.*

 I have worked since I was 16 years old.  I was off about 6 months or so when my daughter was younger; but I decided I enjoyed the workplace more than being a  stay-at-home mom.  Working is a huge part of my identity, it keeps me grounded, keeps me active, and somewhat social.  I love the feeling of accomplishing something and getting paid isn't a hardship either.

 Even after I was diagnosed with Lupus, it never occured to me that I shouldn't work or that I couldn't work.  Once after my bypass surgery, my husband and I went to the Social Security office to talk about disability. We were greeted by a gentlemen with a below the elbow arm amputation, who was going to be my caseworker.  He walked us through the process of paperwork and time lines.  After leaving the office, I decided if the man we just spent a couple of hours could work with such an obvious disability, then I could too.

 I've never looked back.  I love my job, even as stressful as it can be. It keeps me from isolating myself from the world around me. Working also helps me have a some "normal" in my life.  I will work for as long as my body and mind allow me too. 

 

www.lupus.org*

Define yourself

A diagnosis of lupus remains with you for the rest of your life. And, as you have read, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself. But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.*

 

 It is extremely important for a person diagnosed with Lupus to be able to not only accept the disease but to also accept that even with Lupus life goes on. We may have periods of remission but aside from that Lupus is not going away. Acceptance comes at different times for all of us. When acceptance comes to you then you can get to that place you can start to live your life.  It took 3 years after being diagnosed for me to FULLY accept some of the changes in goals for not just my life but our family life.  At 28 years of age, I had to let go of the dream of being able to have more children. This was and honestly still is the hardest part of Lupus for me to accept. It took a while to get here but once I realized that if I spent all my time bemoaning not having a house full of children; I was going to miss out on the child we do have.  But no matter what I am a firm believer in not allowing the fact that I have Lupus become a negative in my life. Even in how I say that I have Lupus is important to me. I don't SUFFER from Lupus, I SURVIVE it and I LIVE with it. 

  Admittedly there are many things I am either physically unable to do or I can't do them safely anymore because of Lupus and the complications I have and/or medications I take.  However I refuse to dwell on those things because there is so much more that I can do and will do. I don't waste time or energy on "why me", it isn't a question that will ever be answered to my satisfaction so why ask it. Instead the question I ask is "What can I do to get better?"

 Lupus is different for all of us, from mild and on one medication to organ involvement and multiple medicines. My case is not mild, I have Class IV Lupus Nephritis, antiphospholipid syndrome, severe joint pain, and bone damage from steriods and chemotherapy.  I am married, a mother, I have a career, friends, and even enemies. I fight everyday to not let Lupus be the only thing that defines me.  

  

 

 

Related articles

Helping Someone With Lupus Adjust to Physical Limitations

Helping a Loved One Get Through a Lupus Diagnosis

Sun Exposure

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.*

 

Tomorrow is Mother's Day and there is nothing I'd like better than to be outside in the backyard enjoying the sun and warm air all day. I've always loved the sun and being outside with a book and a radio, this is my idea of a good time.  After all the Sun is a wonderful source of Vitamin D; which we all need. Sunshine and warmer weather bring people out of their homes. It makes us more social and typically puts us in a better mood. Unfortunately with Lupus I've had to give that part of my life.

 My time in the sun is now no more than an hour at a time in the Spring and so much less than that in the Summer. Even with protective clothing, hats, and sunscreen the sun drains me.  I have a sunroof in my car; if I leave it open during the heat of the day my scalp breaks out where the sun touches. Even during a quick 10 minute drive from work to home.

 Of all the things I have had to give up, this is one that that pisses me off the most! Occasionally I take my chances and go out for to long even though I know exactly what will happen. Prolonged exposure to the sun does cause me to flare. I don't get angry at Lupus then, just at my own stubborn self.

 I have learned moderation when it comes to enjoying my time in the sun. I still get my sun fix, I open the the sunroof early in the morning starting in March. I have to turn the seat heater on because its in the 40's and 50's in the mornings. I can sit in the backyard in the shade for a few hours. The sun still makes me feel alive and the thought of it even energizes me a little.

 So my Mother's day will be have some time in the sun, just enough time for me to enjoy and not get sick.

 

www.lupus.org *

 

Get Over It

One day at a time is not how I chose to live my life but how I have to live due to Lupus. Those of us with Lupus have many ups and downs. From one day to the next we never know how we are going feel or at what level we will be able to function. Family, friends, and pets are important during those down times. Those things keep us going and looking forward to tomorrow. 

 Sadly one of the biggest changes that comes with a Lupus diagnosis is not within us, but with our support system.  Invitations, phone calls, and visits from people we love trickle down to nearly nothing and sometimes stop coming altogether. For quite a few of us; if we are lucky enough to hear from our family and friends it is to tell us to get over Lupus and move on. I can tell you I've practiced "Get over it" therapy with Lupus and it doesn't work; I still have it. People are afraid that we want to talk about Lupus nonstop however we want just the opposite. We want to enjoy time "away" from our disease.

Lupus Among Friends

A network of friends and neighbors can give the same kind of valuable support as family members: lending a helping hand with chores and errands, offering a sympathetic ear or a comforting shoulder. But in order to give support, friends need to have some understanding of the nature of lupus.

It is not necessary to share all of the details about lupus. But you will want to describe the possible symptoms of lupus and your symptoms in particular. Explain your treatments, as well as the fact that lupus can develop in men and women, teens, and children. Be ready to respond to questions and be careful not to react impatiently to sometimes inappropriate advice and comments. Let your friends know what to expect when the disease is active, such as last-minute cancellations, why usual activities might be scaled back, and side effects of prescribed medications.*

 There's nothing more in this world we want than to be there with you. Our bodies simply don't allow it sometimes.  Even if we can't go on outings and to events we still appreciate the invite. It lifts our spirits and lets us know that you still care. It makes living with Lupus more bearable. It makes this disease less isolating.

 When I can't go with my family and friends, they send me pictures during the events, or text me descriptions of whats happening. Anything to help me feel like I am a part of the experience. 

 Don't give up on us because we can't do what we used to do. Its not easy on us to have to make the change from who we used to be to who we HAVE to be.

 One day at a time isn't how chose to live- Lupus makes it so we HAVE to live this way.

www.lupus.org*

Don't suffer

Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.*

  I was recently introduced to a young woman, who asked to meet me after being told that I have Lupus. She has been diagnosed around 2 years and so far has had only minimal problems. She is a college student working on her nutrition degree.  I was astounded to find out that some of her instructors have told her to never tell anyone that she in interning with that she has Lupus.  She was told it would lessen the chances of her being hired if she stays here. 

   Is she less likely to be hired as a Dietitian than who has diabetes or hypertension? Is it being inferred that Lupus is something to be ashamed of? That we've gone back to the dark ages and have to hide our illness because of the "stigma" attached to Lupus? There is literature out there that says people with Lupus can't hold down jobs or be in relationships. Does that happen?  Absolutely it does to some  but not to all of us. I've met people  who have put off having relationships and working because of Lupus.

  My diagnosis is not something I hide, I wear my purple Lupus bracelet 24/7. Before I let others know that I have Lupus, I let them get to know ME first. If its in an work situation, then they get to see my work ethic, how I handle stress, pressure, and deadlines. Usually with a few weeks if someone else hasn't told them I will let them know.  It helps them understand that a person with Lupus can be productive and reliable.

  Attitude also has quite a bit to do with how we are perceived by the world.  I have a positive attitude about life in general. I've gone thru hell and BACK with this disease . Many years ago I decided that I could either live life my way and enjoy it or I could let Lupus be the focus of my life.  I will never say,"I SUFFER from Lupus".  To me the term implies that Lupus has taken over your life. I don't suffer from anything, I LIVE with Lupus.

 Dont misunderstand, I am not implying everything is wine and roses because it isn't. I have bad days too. On those days I am  slower than normal and I hurt like hell. I work through the fatigue and pain because that's who I am.   I have a routine established and that helps keep me on an even keel. 

  Lupus isn't something to be ashamed of, nor is it something to hide.  I feel that keeping secret adds to the feeling that it is something to be ashamed of. It takes time to change minds about a disease that many do not understand. We can do it one person at a time.

 Lupus alone does not define me as a person. It is certainly a part of me, but by no means is it all of me.

www.lupus.org  *

Lupus Parenting

 A parent with lupus has additional challenges to the already heavy demands of parenting. Your children will have concerns about your health, especially whether or not you will die from lupus. Children are quite sensitive to a parent’s mood changes, but often do not know how to talk about their feelings of unease or concern. At the same time, they probably cannot help focusing on how your illness directly affects them. It is vital to have good communication within the family. Sharing information with your children about lupus and the changes it brings -- both to your health and to the responsibilities of different family members -- will help everyone.*

 

 My husband and I have always been a little unconventional in everything we do. This includes marriage and our view on raising children. We decided early in our marriage that we would raise our child the opposite of how we were raised. We wanted to be open and honest with each other and as honest as we could with our child.  Honesty has been even more important since I was diagnosed with Lupus. We didn't want to pretend that everything was okay and that I'd be fine. With the severity of Lupus that I have pretending was not an option for us. Children can sense when things are not right.  I believe it can make them more scared, upset, and insecure about the future than if we just leveled with them. 

 Quite honestly, the hardest part of Lupus for me is the emotional side of it.  I've feel that too many times during my daughter's childhood the focus was on me. Instead it should have been on her. I was in the hospital shortly after Christmas in 1998. We lived in New Mexico but because they weren't equipped to care for me I was always shipped by ambulance to Texas. So they wouldn't have to drive back and forth from New Mexico to Texas everyday, she made the decision to sell one of her most cherished Christmas gifts.  This allowed her and her dad the money for a hotel room. Now they would be closer to me and be able to spend time with me while I was daily while I was in the hospital. It was the most unselfish thing I've ever had anyone do for me and she was only 7 years old at the time.   

 Both my husband and I worked hard at keeping her life as normal as we could despite this disease. We did everything we could to not make a big deal out of Lupus. Neither of us sensationalized Lupus, we tried to make it just another part of our lives. We didn't want Lupus to become most important thing in our lives.   We strived to make anything I was going thru seem as "normal" as possible. For instance;if school was out she sat with me during chemotherapy treatments, blood transfusions, and IV steroids treatments. We did normal things during treatments, she did homework or we'd watch a movie or read, just like we'd be doing if we were at home.  She was with us at my doctors appointments. I discussed the medications I had to take and why it was important for me to take them. Any questions she had we did our best to answer them honestly without scaring her or overloading her with information. 

     We raised her to be strong, independant, and loving. But she is so much more than that; compassionate, understanding, empathetic, and level-headed are descriptions that come to mind when I think of the young lady that she's become. She had to mature faster than I wanted her too and I'll always regret that. All-in-all my kid turned out pretty darn good and as normal as anyone could in this abnormal situation. 

 

 

*www.lupus.org

Related articles

Resources for Lupus Patients

For FSCJ student, lupus won't be insurmountable barrier to getting a degree

My Duh Moment

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.*

  My duh moment came while researching facts to post for Lupus Awareness Month; remission doesn't mean that everything Lupus related stops. It doesn't mean that we are miraculously healed no matter how much I wish it did.  

  The chronic part of this illness means the symptoms last from weeks to years. The symptoms are much worse during the flair. I think I needed time to process the fact that I'm always going to be tired, fatigued, achy, and in pain.  Lupus in remission for me is less severe than usual at this time. Now that I know what I'm facing I think I'll be able to handle the remission better than I have been.

 On to the next issue; I had a rheumatology appointment on Friday. He wants to taper me down to 1000mgs of Cellcept twice a day. I will admit I am scared. The thought of tapering any medicine makes me nervous.  Its never turned out well for me up to now. I need time to get used to the idea so I don't plan on starting the tapering until my next CellCept refill.

  I will certainly pass on the results of the tapering, I'm hoping for the best. 

 

  * www.lupus.org

 

Depression and lupus

 

Depression and chronic illnesses  go hand-in-hand.  In my opinion it is because after being diagnosed your life changes beyond belief. We all live with the knowledge that we are going to die someday.  However having a disease that is chronic; a disease that is always there, it will never go away,  and will never be cured can put negative thoughts in the forefront of your mind.

 Since Lupus is one of the "invisible diseases" one that people can't see sometimes we are isolated, and withdraw from others. We hurt we but we can't explain why.  Its hard to try explain the pain to someone who has never dealt with it.  For me personally I was ashamed that I was in pain. In my mind I should have been able to control the pain or to get over it. When I couldn't control it I became very emotional and full of anxiety. It caused tremendous issues in my professional and private life.

   Many people with Lupus do not have support from family and friends. Our lives have changed; we aren't the same anymore. Because we can't go and do some of the same activities that we've been able to in the past and we get forgotten about. Our families and friends would like us to "get over it".  Sometimes we are labeled as fakers, drug seekers, hypochondriacs, and attention seekers.

   I don't remember having energy to go non-stop. To compensate for the times when I am unable to get out and do normal things I tend to over do it. Then I have to pay for it by being stuck in bed in pain for days on end. Of course I'll end up over compensating again as soon as I recover. The circle is definitely a visicous one and seems like its never ending. This is the primary cause of depression for me. I need to learn how to get off the merry-go-round and stay off it. But it's so much easier said than done. 

 I've learned to not dwell on how life used to be, to stop worrying about what I CAN'T do and concentrate on the things that I CAN do. I am not ashamed that I have depression on occasion anymore than I am ashamed of having Lupus. If it helps for me to share my experience with someone else it's all the better.

You aren't alone because depression can happen to all of us whether we have Lupus or not.  It's all in the way you chose to deal with it. Find someone to speak to a counselor, pastor, doctor, or friend. Start a journal,  join a support group, or find an outlet to be able to express yourself. 

 

 

Today, effective treatment is available for depressive illness and usually consists of psychotropic medication, psychotherapy and, most often, a combination of both.

Effective treatment requires early diagnosis and early intervention. Fortunately, most episodes of depressive illness in people with lupus subside on their own within a few months. Just as some people with lupus can tolerate a lot of pain, some seem to be able to accept and tolerate major symptoms of depressive illness without complaint.

However, depression is very stressful and anxiety-producing, which may aggravate the lupus activity. Depressive reactions should be treated with the same aggressiveness and persistence that one would use to treat a lupus flare, or any other medical complaint. Naturally, any underlying medical condition that could contribute to the depression must be identified and controlled.*

 

www.lupus.org *

 

May Is Our Month!

 The month of May has always had special significance for me; when I was younger its the month that school let out.  May is the month I became a mother.

 May is also Lupus Awareness Month. This is our to make our voice heard. Its time to let the world know that we are here and we support too!

 
Lets put our purple on and let our voices be heard!  Happy Lupus Awareness Month!