Since the lupus walk in June, so many great things have happened. I will also say that some bad things have happened to. My motto is to "Smile Everyday" so I try to make that my reality each day, & it really helps. I still have my bad days, & my lupus struggles, but I try to get through them the best way I can. I have lost some meaningful relationships to lupus & my life changes but I figure if they were lost then they really didn't mean that much to the other person. The one thing that bothers me the most about lupus is fatigue, I'm constantly tired. I'm always laying around, at times I feel like my body weighs more then I'm able to handle, there are so many thing people take for granted, & so many things that I myself took for granted that I can not do today. Lupus will make you listen to your body & if you don't, you will suffer the consequences.
I explain to my friends how lupus affects my daily life by using the spoon theory (instead of spoons, I use cocktail straws) the spoon theory is explained on http://www.butyoudontlooksick.com/ its a great way of explaining & for others to understand what you go through. For the most part I have some great friends & family that have stood by my side & have been with me every step of the way. I did not know what lupus was when I was diagnosed, now I can tell you almost anything, even if I have not had that particular symptom, due to me having met so many great people through social networks, I frequent facebook, I have friends on myspace & I am always looking for great up dates on http://www.cure4lupus.org/, I am also a member of http://www.lupusincolor.com/ , & http://www.wearelupus.org/. I get the updates & support I need from all of these sites, & am hoping to find more.
Living life with Lupus is not easy, it is hard on me mentally, emotionally, physically, & spiritually. It is taking my family on an emotional roller coaster, because they can see that I'm not the same person that I use to be, I just tell them that I'm a different me, trying to get better!!!
There are so many wonderful things that have come out of me having lupus, I have met some great friends that know exactly what I'm going through & can understand, I have become a part of the lupus walk committee in my City & also walk for those that cannot. I have become a facilitator to hold support groups for lupus patients, family & friends. I have founded a non-profit organization called Purple Healers Inc that will thrive in raising awareness. I also created the luxurious "Lupie Hug" wraps @ http://www.lupiehugs.com/ I call them luxurious because any patient with a chronic illness needs something to make them feel warm, comfy, & special. I am proud of the design & taking time to help make these special products for others.
Now don't get me wrong, even though it may sound like I have alot going on, it takes alot for me to have the strength to do all these things, but I'm going to keep fighting. I right now am weaning off of prednisone, which is a steroid that can cause bone weakness & complications if taken for to long. It scares me to have been on this for two years, but going from 60mgs now down to 2mgs is a big accomplishment, but is taking some hard work, & more strength than I'm able to give sometimes. I have the strength of others that are off of this medicine to help pull me through.
Tomorrow I have an appointment with my third rheumatologist in a year. I have had to switch due to insurance reasons. I currently live with lupus & it is not easy, but my journey each week is well worth talking about, its hard to put things that are hard into words, but in many ways it helps to talk about it. My life is not the same, but I believe that life is what you make it, whether you have a chronic illness or not.
Monday, September 14, 2009
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