Tuesday, November 8, 2011

Lupus and the Holidays

Christmas is coming and holiday stress! When I think about the holidays' I think about things like am I going to be able to afford Christmas gifts this year? What do I really need as opposed to what I want. I think this year is going to be hard for everyone seeing as how the economy is bad and prices are going up. It is hard for people with lupus not to stress about these things. Most people who have lupus have to live on a fixed income. I am one of them. I wish that I could hold down a steady job,but unfortunately that is difficult to do. It often makes me sad because I want my girl's to have a good Chrismas, but often times I can't even buy a tree. Each year for the past 4 years I have had to forfeit Christmas, because I cannot afford it. I realize that Christmas is about family and celebrating. I just want to sleep through it. I have seen what Christmas has turned into and when I could not meet societies standards on what Christmas represents I honestly gave up on it. Christmas became commercial and material. It became all about greed. As of lately this whole world is falling apart because of greed. What ever happened to listening to Christmas songs, decorating the tree, and spending time with the people that you love?  I believe that Christmas is a time for me to celebrate one more year of being in remission. One more year that I didn't have to go to the hospital. Most of all one more year I get to spend with my daughter's. So if any of you feel down and depressed just remember that next year will be better. To Each and Everyone of You Happy Holiday's and BE SAFE !!!!

Saturday, October 1, 2011

Taking Time For Yourself and Giving Yourself A Break

Lately I have been taking the time out for myself to regroup and gather my thoughts and giving myself a break from writing. Sometimes you have to do that when you have lupus. Other people don't understand or they act like they do. You have to learn how to pace yourself and realize you can't please everybody. The holidays are coming up and that is when it is most stressful. Planning holiday stuff and, ,yes, trying to please everyone around you.When you have lupus you have to learn to say "NO" "I am sorry I just can't do that." Honestly if people who understood that sometimes you are incapable of doing certain things they would know that it isn't easy. Not only do we have to deal with everyday stressors, but sometimes we are just too sick or tired too deal with it. I am not saying use lupus as the perverbial crutch because that would be stupid, but you should definetely know your limits.  That is why it is okay for you to take an hour or two and just have quiet time.  Use that time to write or read. Maybe get some sleep. I understand for some people you can't do that whether it be you are single parent, you have other obligations. I realize that part, but what I am saying to avoid any further complications with the disease be aware of how much you can handle or how much your body can handle. Just don't be too hard on yourself for not being able to do the things you want to do. If you do stress on it you may end up getting sicker or worse. I realize now that I have bitten more then I could chew at times and I had to slow down and taste my food before I swallowed it.  So with that being said I hope my fellow "lupies" get better and stay healthy during the holiday's

Wednesday, August 31, 2011

Do You Ever Have One Of Those Days ??????

Do you ever have one of those days when you just want to give up? That life living with lupus is too painful to bare? I know I do.  Everyday is a struggle whether it be getting out of bed to doing everyday things like work or doing dishes. Nobody can describe what kind of pain they are in even if it mental or physical or both when you have lupus. Depression is a huge part of having lupus. At times I feel this unbareable loneliness and I don't understand why I have this disease.  I deal with the weight loss and the weight gain. I deal  with up and down emotions some I can explain other times I can't. I used to be so happy and funny, but these days I don't laugh much. I look at my self and realize that my smile is gone. I used to think that it was just me. That I was the only person who had to bare this cross. If I had one wish it would be to wake up in an entirely different body. I know that is NEVER going to happen. I try not to let this get the best of me and anyone who has lupus will tell you that it is not easy. So I fight with every bit of strength that I can muster. I have too. My daughters need me. My husband would be lost without me. My friends would miss me. My life has been nothing but survivng the odds from the day I was born. I would like it if I had just one day to wake up and look at my face in the mirror and like what I see. My mind, body, and soul are just tuckered out. Sometimes I wonder if I am the only one who feels this way. I know that giving up is NOT an option. I know that throwing in the towel is unacceptable.   Life is a choice you either live it or you don't. There is NO in between. So I am going to continue fighting even if I do get knocked down I will just get back up. I REFUSE to let lupus be the end of me cuz I know I have so much to offer. I am a good person. I am a good friend. I f I just stay focused on my  goals and the things right infront of me I know I will be ok.

Monday, August 15, 2011

I Want To Hear From You!!

Sorry for not blogging lately. I was having laptop issues.  I was sitting and thinking to myself that i blog mostly about my experience with having lupus, but what I am curious is about how others deal with there lupus. I want to really take this opportunity to let others write and share their story and how this disease has effected them in their life. I don't believe that if you are hurting and you are in pain that you should hold it in and try to be brave. One, that is not healthy and Two who can you vent to other than someone who is going through the same thing.  When I get my laptop back I plan on having a space where people can vent or write about themselves. Believe it or not it really does help.  Don't be afraid to say something because I do not get mad or upset unless it is personal,but I also don't judge people.  I am self conscious when it comes to the scars from having lupus, but they are a part of who I am. It is a constant reminder of all that I went through that lead up to the scars on my face and body. I didn't like the face I saw looking back at me because I thought I was more uglier. I could not stand in front of a mirror and be happy with the scars on my face from the subcutaneous lupus. I remember one particular day when somebody asked me if I scraped my face on the asphalt. I was completely horrified and seriously offended. That was the main reason why I could not feel or look beautiful. Then I realized that people like that are ignorant and incapable of feeling empathy. Well that is too bad for them. I am over it now , but at the time it hurt. To this day I do get stared at mostly by little kids who are curious. My scars have even been a conversation starter. Now I tell them about it and usually they know someone who has lupus. Having lupus doesn't take away from what is inside of you.  So when someone says something that is mean or hurtful you turn and say ( with a smile)  Thank you and I am sorry  you feel that way. Once you say that you automatically  put what that other person says back on them so they end up feeling stupid and a little embarrassed. I don't know why ,but that is funny to me maybe next time they will think twice about being rude. I would like to give Geoff Thomas a special shout out. He runs The Lupus Magazine online and he put up my blog on there so thank you Geoff.  Just remember you are beautiful inside and out and NEVER let ANYBODY make you feel anything less then that.

God Bless,

Monday, July 25, 2011

I Am So Outraged!!

I am so sick of how patients are treated. People who make money off of someone else's misery is just messed up. A very good friend of mine told me that they went to go see the doctor and they messed up on his dosage. My friend has lupus and he has been battling it for a long time. Well because this so -called professional made a mistake my friend is paying for it financially, physically and maybe even legally. He is a business owner and with the recent stress of running a business on top of the fact that the doctor  decided to mess up on his dosage, my friend has to pay for it with his kidneys literally. Well now the doctor is playing the race card  so he is using that to his advantage even though he got called out for almost giving him a death sentence. I think this individual is a coward and should be held accountable for his actions!!! Knowing this I will never trust doctor's in Arizona they know NOTHING about lupus and besides with the second rate care that people who are on disability no offense or disrespect, but I would rather die then let some egotistical doctor play with my life like they did with my friends. All he could think about is his wife and his son if he was to go away what would happen to his family. Now you tell me what kind of messed up crap is that? Unfrigginbelievable!!! I guess in this day and age it doesn't matter if you don't have the money you are expendable.  

Tuesday, July 5, 2011

Personal Reflection On Helping A Friend In Need

Today I went to visit a good friend of ours. He is the very first male I ever encountered who has lupus. When I first met him he was like the hard rough biker dude who has a military surplus store. Just the mere fact that he has lupus it was like  I had finally found someone who knew what I was going through. It was a relief that I could relate to someone else who was living with this disease. I have always been the kind of person who helps a person in need of help whatever their situation is.  Times right now are hard especially those who can't find jobs or they run their own business like my friend does. That is hard enough on anybody let alone someone with lupus. I had helped him by giving him some business in his store.
  Now a days people get so caught up in their daily lives that they don't realize that there is pain and suffering . It only takes one person to make a difference in someone else's life. Doing an act of kindness never gets old in fact it is good for the heart and for the soul. I know that eventually by helping someone else that it will come back on me and even if it doesn't well that is okay too. Every time I went into the hospital I tried to be as positive as I could be given the fact that I was ill, but I kept thinking that if I gave into the disease I would crumble. I remember on one particular occasion back in '97  there was a student physician ,because the hospital I was in was a teaching hospital, I can't remember her name, but she came into my room with a bouquet of flowers. We were talking and she asked me if I knew why she came to see me. I told her that no I didn't she was a stranger to me that I had met only because I was in the hospital. The flowers were for me from her just to wish me well in hopes that I was going to get better. Anyway she told me that she herself had lupus and she knew what I was going through. It brought tears to my eyes, because even though I didn't show it I was scared. I didn't want to die,but I knew if I didn't do something to help my situation that my prognosis would not have been good. That one person who was kind enough to come in and showed me that they truly cared made a difference in my life.  My doctor came in one day and told me about this one girl who went into renal failure just like me and she didn't make it. I truly believe that God has blessed me in so many ways and for that I am grateful to be alive  and to watch my kids grow up into young ladies. Life is to short too be angry about this and that. Right at this very moment I am in some pain because the monsoon season is here, but I get through it. If  I could I would give a complete stranger the shirt off my back if it meant that I helped someone else.  I know that some people who have lupus are just too tired to deal with all the emotions when it comes to this disease, but keep on fighting you will get through it! One day there will be a cure!!  

Monday, June 20, 2011

Fight 4 Lupus: Why Does This Have To Hurt So Bad?

Fight 4 Lupus: Why Does This Have To Hurt So Bad?

Why Does This Have To Hurt So Bad?

Everyone who has lupus deals with the pain one way or another. Whether it be in your joints, muscle and various other places. The only way I can describe it is the pain is dull and intense. It is like your whole body is on fire. There is a a lot of ways to relief the pain, but are they good for you?  Doctors tell you that if you have inflammation take an anti-inflammatory like Ibuprofen or Aleve.  These pills are supposed to help, but your pain is really intense and the anti- inflammatory  doesn't work how do you deal with that?  What I usually do is take a really hot bath, but unfortunately that only lasts for a certain amount of time. I usually take a Tylenol PM because it helps me sleep and I don't feel pain in the morning. Now I am not trying to suggest that you use it, but whatever you use to help relieve the pain that you are feeling by all means take something. There is no reason to live uncomfortably with this disease.   Some might say that they don't want to be addicted to the pain medication. That is okay. Personally I just don't like being in pain. I respect those that can deal with having lupus, but for those who can't deal with the medication and the side effects my heart goes out to you . There is no easy way to really live with this disease. There are those who say suck it up and get over it, but that is easier said then done. There has been days when I just lie in bed, because I don't feel good. Yesterday I went on a hike and got over heated so my hubby poured water all over me.  Luckily there was a breeze so it felt awesome and I cooled down immediately. Yes I had sunscreen on my arms and I was wearing a hat. I try not to go out in the sun that much because if I do I get really nauseous.I really would like some feedback from people who read my blog. I know that this disease is different with anybody who has it. If there is a topic that you want me to write about I would really like it if people would comment.  Give me some idea on how you are feeling!!!!

Sunday, June 12, 2011

Lupus and Positivity

When I go on Facebook and I read people's stories about their personal  battle with lupus.  It really touches my heart to read about the trials and tribulations in dealing with lupus and how it has affected them and their families.
They really inspire me to fight with them. I know what it is like to look in the mirror and just stare at my scarred face and think " God I am ugly".  I remember when my face had discoid lesions that were pretty fresh and some jerk had the audacity to ask me if I scraped my face on the on the ground.  I was so hurt by it and I remember thinking at the time " Who the*  blank* do you think you are ?
Man, did that piss me off.  It was even worse when I had to go out in the public. I couldn't even look in the mirror. Then after awhile something finally clicked and I realized that the scars are a part of who I am and they don't define who I  am on the inside. It was difficult to accept it, but when I finally did it was a revelation and a relief to accept who I am scars and flaws included. I got tired of crying about ,because really what is that going to accomplish. Don't get me wrong when you have lupus you are not thinking about how great life is and how things are fine and dandy. They really aren't that great. So how do you rise above it? I believe in prayer and healing.. I know that we don't feel good and it hurts. Use that pain and discomfort for the greater good. Don't be afraid to say " Hey I don't feel well can you help me?"  Never be  to proud to accept the help. Honestly the people who have this disease are the ones who really know how they are feeling. People need to understand this that we are capable doing only what our bodies will allow us to do. I am a strong believer in
" Life is what you make of it".  To all the people who have read my blogs thank you . Keep strong and get the support that you need whether it is from friends or families. Let people know that lupus is real and fight to find a cure. I refuse to give up on those who need a helping hand or a shoulder to cry on when they are in pain. Whoever you may be and however long you have been living with this disease you are beautiful inside and out.

Thursday, June 9, 2011

Having Lupus and What It Means To Be A Survivor

The definition of a survivor is a person who continues to function or prosper in spite of  opposition, hardship, or setback. Everyone has a story to tell and everyone has survived one way or another. Well I am going to share another part of my life with  you. Just as the Vietnam War was ending another uprising was starting. If you have ever seen the movie "The Killing Fields" that movie will give you an idea about what I was being born as a Cambodian. It was a time of sorrow and pain.  Thousands of people died as a result of one person who was basically an evil dictator. Most would say that he was a Asian version of Hitler. His name was Pol Pot. He had a regime that was called the Khmer Rouge (his army) and whoever didn't follow him were killed. He had ordered landmines that were placed in the fields and anyone who stepped on it was killed instantly others lost more than just their dignity they lost there limbs . I only have bits and pieces of stories that may have or have not happened to my biological parents. According to the information that my adoptive parents were given when they adopted me my biological parents were killed in a rocket attack and judging from a shrapnel scar on the back of my leg and  I believe that my mother was holding me when she died. I was 9 or 10 months old when I was adopted. I was one of many babies and children who were orphaned in the massacre .There was a wealthy gentlemen who wanted to help. He had sent a few commercial airplanes for the orphaned children and babies The called it "Operation Baby Lift"  Over 3,000 children were rescued one of the planes that was caring the orphans actually didn't even make it off the ground it crashed into a rice paddy.  That particular plane was carrying 350 people on it and only 154 survived.

When I was a baby my prognosis of my developmental abilities were slow. I was malnourished and very sick.  My birthday isn't really my birthday at all it was given to me. I spent most of my life wondering what my mother was like or if I had any family that was still alive. I would love to visit Cambodia one day, because it really is a beautiful place. When I was 10 years old I had a grand mal seizure and it was so bad that I was put into a drug induced coma. Then 6 years later to the day I was diagnosed with lupus.  I had my lupus under control and was afraid to even have kids and I really didn't know if I could have kids.  Well I had 2 beautiful daughter's  and then in the summer of  '97 is when I had a flare up and almost died.  All the things that I have gone through I went through for a reason.  For the longest time I didn't know what do to do with the burdens that I was carrying.  I fought my hardest to stay healthy so I could watch my girl's become young ladies and eventually watch them get married and have children of there own.  Having survived all those things in my life have helped me a better person, a better mother, and a better wife. My family is what I am inspired by.
  I know that for some people it is not always easy for them to live with lupus and be happy about there situation whatever it may be. Honestly I don't know when and if I will  have another really bad flare up. What I do know is that I think I was born to survive. My wish is to reach out to others who are suffering. There is always a light of this tunnel.

Thursday, June 2, 2011

Lupus and Your Immune System

Everybody has different immune systems and people with lupus know whenever flu or cold season comes around.  You should stock up on vitamin C  and get plenty of rest. While everyone else's immune system is fighting off viruses people who have lupus generally have a difficult time fighting off those viruses. Our immune systems much more complex then that of a healthy person. I know when my body is working overtime, because when  I get sick  my body is fighting that much harder. Depending on whether or not my immune system hasn't been compromised I am able to fight off the virus, but if I am having a flare up I usually end up with pneumonia or a upper respiratory  infection. Whenever that happens I end up in the hospital for a couple of days. The weird thing is that whenever I have my blood taken either the doctor's don't  really know what to look for where lupus is concerned, because they end up telling me that it isn't the lupus. I am sure if you are someone who has lupus you are probably thinking to yourself  "All I want is for just 1 doctor to diagnose me right is that too much to ask?" As I am writing and just the thought of all the issues that us people who have lupus whether it be internally or  externally it really is stressful and they tell you not to have too much stress!!! Are you kidding me???!!  Here is what I have to say about that "WHATEVER"  How are you not supposed to stress when you have all these doctor's can't give you a straight answer. I have been fighting this disease for a long time. I have heard on numerous stories of people who have had complications with lupus and as a result they passed away. My heart goes out to those people who have suffered greatly due to this relentless disease. You need to ask yourself this question. Am I in control of my disease or is the disease controlling me? If you are a the person who looks at you and says" You don't looks sick"  you turn to them and say " Walk a mile in my shoes and tell me how that works out for ya" .

Friday, May 27, 2011

Misconceptions About Having Lupus

Whenever you look at someone who is diagnosed with lupus your first reaction is " What's that?" Then when you describe what lupus is either someone says they know someone who has it or they have never heard of it. The next reaction would be "You don't look sick! " I am not going to lie, but sometimes I get annoyed with people like that. First off I may not look sick to you, but I feel sick . I feel bad sometimes because I can't always get my daily chores done. A simple task to someone else who doesn't have this disease can keep up with daily things that they need to do. For those who do have lupus even a simple task like doing the dishes or getting dressed is a difficult task. The other day I managed to have the energy to do the dishes and clean the kitchen. I felt so accomplished !! I did however pay for it later because yesterday my body felt like it was on fire. I stay indoor pretty much because if I am out in the sun too long I start feeling really sick and my body hurts. No I am not a prisoner of my disease. I just prefer it. Some people don't really have a choice, but to go outdoors. My advice to you is stock up on sun screen and big hats. I hate the sunscreen though because it makes my skin so oily. Even with the protection of the sunscreen won't always help. I live in the desert and believe me when I say that the sun and me are not friends.  I seriously feel like a vampire sometimes. I truly love the outdoors, and I am careful of how much sun exposure I get. When I tell people about having  lupus I tell them my whole story I tell them of how it affects me. I tell them that there isn't a cure at the present time. I try not to have a negative attitude about it, because what is that going to change?    All  I can do is to stay healthy and keep doing my blogs and hopes that it may help somebody else. I don't want to sound like a broken record. When I was looking on some websites about lupus and they were talking about "Brain Fog" I can honestly say that I have it almost everyday. I will be talking to someone and then all of a sudden my mind goes blank and I will forget what I was talking about. I am not to proud to say I have brain  fog  !!!  Well that is all I have to write for now. Thank you for taking the time to read this.

Thursday, May 26, 2011

Lupus and Pets

I would like to say that having a pet when you have lupus is just amazing. I have a dog named Brock. We rescued him from a shelter, because the month before I had to put my other dog, Rufus , down due to the fact that he was suffering from a brain tumor. Rufus was like a person. He had the best disposition as a pit bull mix. Whenever I was tired or hurting Rufus was by my side. After he passed away that day I just broke down  and it was hard for me to admit he was gone. It was very stressful for me. I had been very close to him. I know he felt my pain. He would lay his head down right next to mine and immediately felt relief just by petting him. Brock is a little bigger version of Rufus.  My husband thought that with me having lupus he was worried that the stress would cause a flare up so he let me decide when I was ready to get another dog. I didn't want just any dog. I wanted to find a dog that was similar to Rufus. I know that finding a dog that is just like Rufus is impossible and just plain dumb. I wanted to find one that had his disposition.  I was looking around with my daughter and my husband in the kennels. A couple caught my eye, but none of them really stood out for me. We were about to leave then someone asked about a corridor that we didn't even know about. So as I am walking into this last corridor it was really loud with all these dogs barking. Super cute dogs that were just begging me to take them home. There was one dog that really had my attention. He was the only dog out of like 6 dogs that wasn't barking or caring on like the other dog's. He was just sitting there looking up at me and not barking, but wagging his tail and licking my hand through the cage. He was just so cute.  We asked questions like how long has he been in there, what was his temperament  like, and if he would be the best choice for us to take him home.  We had to wait a whole day because he was getting neutered. When I finally got him home I was so elated just for the simple fact that I was on the road to healing. Having a pet when you have a disease like mine I think  is crucial to be able to help get you through the depression and pain. To anyone who is fighting this disease I encourage you to invest in a pet. Although it won't cure you it will makes thing a little easier. Thank you for all the nice comments that I have been given concerning my blog.

Monday, May 23, 2011

Lupus and Health Care

Lately people have been worried about the healthcare crisis and what it is going to mean to them. I am worried as well. Right now I receive government healthcare through Social Security. That pretty much gives me second rate treatment when it concerns trips to the doctor's, medication,or even home care. Are we going to be swept under a rug?   Do you think that you are getting the care you deserve? Is it the right treatment? What about those who are on dialysis and are going through renal failure? Who is willing to fight for them and provide sufficient means to get them the care that they need? I just recently put up a fundraiser so that I can help people who can't afford to pay for medication in Arizona, so that they will have the money to do so. I am new at this, but I really want to fight as hard as I can, because sooner or later the people who are on Medicaid or government healthcare will have depleted the funds that patients need. I realize that I may step on people's toes or make someone upset, but really that is not my intention. I know money is tight,but even if you donate $5 dollars I know that in time it could enough to help those who need it.

Lupus and Diversity

When I started blogging about lupus I was trying to bring awareness and education to those who didn't know about this disease. What I failed to mention is who it affects. Lupus and diversity go hand and hand. Men, women and children are susceptible too. Latino, African American, Asian, and, American  Indians can also get lupus. There is so much that researchers don't know about SLE.  Each person who has lupus all have different symptoms. That means that no 2 people will have the same symptoms.  I truly believe that researchers will find a cure for this disease maybe not in my lifetime, but I am hopeful. Where I live in Arizona is a very small town I have talked to many different people and every time I talk to people in my town they tell me that either they have never heard of lupus or they know somebody has it ,but they don't really knows what lupus entails. Sometimes I get the occasional raised eye brow or when people ask me if I work or if I have a job. Well at the present time I am not employed at the moment. It is not that I can't work, but if I did get a job it would have to be one that is not stressful. What job isn't stressful?  Each day is different and lupus is the kind of disease that just pops up unexpectedly.  I think some people that have this disease and the get the butt end of the stick mostly because you don't look sick. That is what really makes me mad. When people who look at you and you now they are thinking" yeah right she doesn't look sick." Normally I am not a mean person , but sometimes I want to tell those people to walk in my shoes for a day and then tell me how you feel. I often wonder if others feel the way I do? on that note I am going to leave it at that.

Sunday, May 22, 2011

Lupus and Being A Mother

When I was diagnosed with SLE I was too young to think about having kids.  I was born in Cambodia at a time that there was genocide going on. I was adopted by an American family at the age of ten months old   , because my parents were killed in a rocket attack.  So I did  not know much about my biological back round. I didn't know if I could have children and if I did would they have lupus too?  I started my family young. I was 20 when I had my first daughter, Natasha (16) and she was born healthy.  I was so excited to be able to be a mother to someone who came from me.
 During my pregnancy I was worried that she wouldn't be okay.  My delivery was long and tiring, but I gave birth to her and she was perfect.  I was in a good hospital that dealt with high risk pregnancies.  I was enjoying being a mother and my lupus was under control.   Not even a year went by and baby # 2 was conceived. I started  to show little signs of a flare up , but nothing the doctor's were concerned about.  I had found out that I was having another girl I named her Kassie (15). I gave birth to her in ten minutes and she was healthy as well.  Both times of having kids I still had concerns about passing the lupus gene on to them , because I was told it skips generations. I had them checked immediately for lupus. Luckily they didn't have it at the time I had them tested.   Recently my youngest, Kassie has been showing little signs that maybe I need her to get checked out again.  The worst part for me is that I can  see a butterfly shape forming on her cheeks an that scares me and I am just petrified that it is possible she could picked up on the lupus gene.  So I am going to have her screened again so hopefully I am just worried over nothing

Let me tell you that motherhood and having lupus is a challenge.  Not only do you have to worry about your health, but now I have to worry about my kids health and how I am going to avoid getting sick myself.  That didn't work out too well for me,  because every single time they came home and they had been around other kids who were sick I was the one who always caught it.  It never failed. I would get a cold that would quickly turn to an upper respiratory infection that would turn into bronchitis that would then turn into pneumonia. I was a mess and I still had babies to take care of. That was hard to do, but I got through it.
NOBODY could ever have warned me that at the age of 9 -16 I would have a double dose of stress. I can not begin on telling you how I have managed to stay in remission as long as I have, but by the Grace of God I did it.  Now I am not trying to say that I am a super mom who has lupus. That would be really dumb on my part,but what I am trying to explain is that each and everyone of the people who have lupus has a super strength that makes them want to fight. Other's may not feel the same. It really is about motivation.  My motivation is my girl's. To watch my kids grow up into young ladies and then be there for them when they get married and have babies of there own. That is what gives me strength and motivation and try to have a good attitude. If I get knocked down I will dust myself off and get up again. My heart goes out to all the ladies and gentlemen who struggle and they are just too tired to fight.  Well that is all I have right now. I would like to thank everybody who has read my blogs I appreciate the kind words and support.  I think that is why I called my blog Fight For Lupus, because if someone doesn't have the strength to do that and I will fight for you.
Thanks again for reading my blog. To be continued... there is so much that I would like to cover.

Friday, May 20, 2011

Who Says I Can't !!!!!

There are times when I get in this stupor the kind of blah feeling. Some days I don't want to wake up and start the day because it hurts to even walk to the bathroom. Other days I can manage just fine, but there is a big price to pay. Feeling the pain later. You try to take a hot bath so your body relaxes, but even that doesn't help much. You try not to take it out on the ones you love ,but you can't help it. Then you start feeling bad because you think nobody gets it. So you sit there and have yourself a good cry. If you are at work and you are not feeling your best, but you are not really showing it because you don't want to lose your job. Who can you really turn to for support?  You know what? It's ok to cry and it's ok to be upset. You can only do what your body is capable of doing. I spent a long time being a people pleaser and put on a front so nobody thought that I was a big baby or that I was using my disease as a crutch but inside I was hoping that there was people out there that was just like me. Then there was this invention called the internet. I didn't know how or even what I was going to do as far as lupus was concerned, but then I started to noticing that there were more people then I thought there was who had this disease. That is when it all started to make sense. I realized I am not alone in this and if I just reach out to anybody who goes through what I do. So then I just decided to go ahead and put myself out there into the internet and tell my story. I also believe that # 1. It could help someone else and #2 this is therapy for me.  I am hoping to inspire people to tell there stories so that they too can be help for somebody. My mom always told me that I was special and even though she  didn't really understand it I know she believed in me. I know that I have a destiny or a calling and even if just one person is inspired or touched in anyway then that makes me fight that much harder for those who don't have the strength  to fight.

Wednesday, May 18, 2011

Educate and Bring Awareness For People Who Are Living With Lupus

I would like to start off by telling you about myself.  I was diagnosed with lupus when I was 16 years old. Systemic Lupus Erythamotosis  is an autoimmune disease. This means when your body can't fight off infections or virus's then the body starts attacking it's own organs. Lupus can effect your kidneys, heart, central nervous system. There are three types of lupus. Systemic which effects the organs, discoid  which you get disc like lesions, and drug induced. What is really unique about lupus is that  the disease effects people differently. This means that no two people can have the same symptoms. Lupus is very hard to diagnose and if you don't know you have it get tested for it. At present time there is no cure, but that doesn't mean give up fighting there is always a light at the end of this road.  Please join me in helping to educate and bring awareness to people who know or has this disease. For me, lupus represents strength, courage, and most of all bravery !!!! My name is Mary Campbell and I am a survivor of lupus!!!!