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 !!!!

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

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.

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,
Mary

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.  

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!!  

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

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