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!!!!