Thursday, November 8, 2012

Living with lupus

I promised to try to update my blog again daily as it is really my only form of outreach I have. Especially lately since I have been flaring like crazy! I am writing to you from my bed, since I can't seem to get up or walk the past couple of days without a lot of pain that no amount of pain killers is even touching.

I know some of you have read the "spoon theory" but I must post a link once again so those who haven't read it can maybe understand a little better what its like to live a life with lupus...the spoon theory ... the woman who wrote it couldn't have explained it any better in my opinion and why we call ourselves "spoonies".

Basically Lupus is marked by a low grade fever, rash on the face and chest, painful swollen joints, migraines, sun sensitivity, kidney problems, heart problems and many others, these are just a few of the symptoms I myself endure. Its an auto-immune disease that causes your body to attack healthy cells and treats them like they are foreign or infected; thus activating the immune response and causing damage to otherwise healthy organs and cells.

I am in one of these "flares" right now along with my fibromyalgia; which in itself is almost worse then the lupus because it causes your nerve endings to become ultra sensitive and it hurts to even be touched, wearing clothing, brushing your hair, teeth, getting dressed is an exercise of pain and endurance. Heck it hurts to even have the shower running on my skin during this flare:(

After and since my heart attacks and stroke this past summer I am really scared about the outcome. I have lost so many lupus friends over the past year due to complications from the lupus it really makes me wonder why I am still here; my mom says I have the lives of a cat (I'm not sure if that's a compliment or a complaint, lol; however I have endured much worse in my years of life and I will do everything in my power to fight this as well. I have never been a quitter or someone to give in or up easily; some days are honestly harder then others to maintain the smile through the pain and keep on going no matter what.

Where cancer is concerned there are 150 cases diagnosed every minute according to cancer stats; where there are currently 500000 to 1 million lupus patients already suffering with this disease and according to lupus and fibro facts 16,000 are diagnosed annually. This does not include those who are and will continue to be misdiagnosed frequently because Lupus mimics so many other diseases such as Lyme disease.

The medications are a cocktail of cancer drugs, anti-malarial medications, steroids and of course the never ending trial and error of medications to keep us comfortable and try to obtain "remission" which I mentioned in an earlier post that I don't believe in, simply because when we aren't flaring the immune system is still actively attacking us. There has been a new drug called benlysta which has been on the market for about a year now and most insurance companies don't cover it as it is extremely expensive and still not many doctors trust it for the treatment as of yet. At least my doctors don't trust it enough to try it on me, even though I currently have no insurance, so I guess it doesn't really matter to me anyway.

I just want to have some kind of quality of life, laying in bed, not being able to do the things I love, having to cancel at the last minute on those I love is devastating and depressing at best. So for now, I am going to give in to the uncontrollable extreme exhaustion and go back to sleep for a while.

Love and blessings to you, thank you for reading and subscribing to my page. It means a lot to me for those of you who don't know me to want to read and learn from my life's experiences.

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