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Tuesday, February 1, 2011

Why Start This Blog?

I decided to start this blog because after suffering from symptoms since the age of 16, I was finally diagnosed with Systemic Lupus this past December at age 32! But for all of the years in between I have been the victim of many misunderstood medical mysteries and harsh judgements from friends, family, co-workers, and doctors alike.  I have been treated like a hypochondriac, a manic depressive, and an attention seeking loony who was faking lots of crazy symptoms apparently just for the hell of it (and still am treated that way by some people).  Despite the fact that I had blood tests, urine tests, MRI's, CT Scans, EKG's, X-Rays, Spinal Taps, Pulmonary Function Tests, Ultrasounds, Colonoscopies, and Laproscopic surgeries that all found abnormalities and Lupus was suspected by some doctors, the widely held beliefs in my family and circle of doctors were that I was just "depressed" or having "phantom pains" or I was just looking for excuses on which to blame my being "fat and lazy."  So in addition to having MANY surgeries as a teen and in my 20's to remove many non-working organs that you can have removed and still live without, I was ridiculed and had anti-depressants shoved at me. 

Constantly having health issues and not being taken seriously, by even the people you thought were most close to you, really starts to take a toll on your emotions.  After I turned 30 and my symptoms became increasingly worse with each passing year, I finally found the right doctor who did a kidney biopsy to diagnose my lupus and at the same time discovered I also  have two types of kidney disease.  He was smart enough to realize that if my blood tests kept fluctuating (making a blood test based diagnosis impossible) that he needed to find another way to make the diagnosis instead of treating me like a liar and a hypochondriac.  He could SEE the Mylar rashes and my swollen joints, hands, face, and feet.  He could see the blood and protein in my urine and the liver enzyme reports that were through the roof.  The funny thing is, that all the other doctors saw the same things and dismissed them just because my blood tests were never consistent--so clearly I had to be crazy. That was the only possible diagnosis.  And as for my family, they were convinced it was all an act. So I started to actually FEEL crazy.  What if it WAS all just in my head?  Was I really such a talented actress that I could make Mylar facial rashes appear at will?  And what about all those blood and urine tests? Did I fake them too?  And that stunt of making my hair fall out in patches was especially talented on my part.  Man, if I was capable of all that, I really should have packed up and moved to Hollywood! 

Once I started talking to other people with Lupus on Twitter, I found out that many of them suffered the same abuse from their doctors, friends, and family.  It helped me so much to know that I was not alone in my situation that I decided to start this blog to share my story to help other people out there with Lupus know that THEY aren't crazy.  Their pain (the physical and the emotional) is real and deserves to be validated.  I am writing this blog in hopes of connecting with other Lupus patients and their families to make an outlet for discussing what it is like to live with Lupus and/or to love someone who has Lupus.  (And hopefully bring some smiles and LOL moments along the way.)  Of course I will talk about other topics because Lupus isn't my WHOLE life, but it certainly affects how I live my life.  I encourage other people to share comments and questions as I share my journey through life, a life with Lupus.

3 comments:

  1. Well Missy! I think it's a darn good thing I will help you to map things that have happened in your life. This will be something I will look forward to reading. Love you my friend.

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  2. I found a work around. I la u too!!! I love the way you write!

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  3. Thanks ladies! I look forward to getting your comments on my posts! I love to write and especially if someone is going to actually read it! Love you!

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