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Ramblings on Lupus, Health, Life and UVA1 Phototherapy

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An ongoing discussion on lupus, UVA1 Phototherapy for lupus and other disease, and life in general. Some posts are specific to lupus, some to lupus and UVA1, and some others will just be ramblings...enjoy!


A Very Appropriate First Blog Post About Lupus and UVA1 Phototherapy
A Very Appropriate First Blog Post About Lupus and UVA1 Phototherapy

It just so happens that in the middle of this new site launch my regular check up with my primary physician was due.  She wanted to run labs (specifically a lupus panel and urine test) to check for lupus disease activity.  My doctor is well aware that I started using UVA1 Phototherapy 4 1/2 years ago and has been rather astonished at its results so far.  No more lupus.  Still, we do regular check ins-just in case.  So far, full remission, and this week was no different.

Yesterday afternoon my phone rang, and instead of the annoyance I often feel while fully engaged in some mind-numbing but necessary project, I was grateful for the interruption.  Thank God!  I didn't think I could handle much more "YouTube Academy" without having a few martinis to boost my not-so-creative spirit. But then again, I am sure my creations would have veered off track...

"Joanne??"

"Yeah...

"Your lab results were completely NEGATIVE!  All of them...not one single marker was positive", my doctor's assistants exclaims rather excitedly.

"Seriously?" 

"YES!! You are a case study! We have never seen this before.  No one fixes their lupus.  Come by to get a copy of your labs sister!"

I don't know why I was surprised because I have A LOT of faith in UVA1 Phototherapy and I had already come back negative three years running.  I think her excitement was contagious.  And I must admit, it feels really good when qualified medical personnel are supportive.  There have been more than enough "you are crazy" and "no way" comments throughout this journey.  I needed the encouragement to be honest.  This was definitely better than a martini binge.

I thanked her for the call and promised to stop by and 'harass' them soon.  Usually I wait a week or more to get my letter in the mail stating all is well but for some reason they called me this time, and it was the day after I did my labs.  Wow.  I guess that the first few years left a question dangling in the air-will this really hold?  How long will it last? If UVA1 is so effective, why hadn't any of us ever heard of it??  Perhaps it is because lupus almost NEVER goes for almost 5 years without flaring and rearing its ugly head.  Maybe this time really cemented in for all of us the fact that my severe and progressive lupus was gone.  Vanished.  No trace of the beast or the rashy mask it carries.  Nothing. 

So here I am, lupus-free, just a boring "normal" person with a bad back.  In some weird way I feel the boring.  It is hard to describe; a 'let down' sort of feeling similar to what I felt for a few months after graduating college.  Well, now what do I do with myself?  Great problem to have I suppose.  Just strange--trying to dig up new defining qualities for myself and get rid of the old excuses.  Instead of the constant "No, I can't" replies that I was uttering on a regular basis I find that I can.  All of the time.  And if I don't want to, I really have to dig for a good reason.  Ah, my troubles are laughable looking back on what I experienced during my lupus.  Quite laughable.

For years I spent most of my time in a state much akin to a full out coma.  Sleep was the only thing I could do.  There were days I was able to get up, stumble to the bathroom and brush my teeth, but those days were limited.  Whenever I was not literally willing myself step-by-step through a shift at work, I was in bed. Lupus does that. It sneaks in, takes over and commands your life into a state of permanent hibernation.  Lupus steals time...stealing your years away from you by making you so sick and tired that you simply sleep your life away.  The pain with lupus was severe and constant.  Losing my hair was a defined and lingering sting to my vanity.  The drugs were almost unbearable.  But the missing out on everything, the isolation lupus brought, was by far the worst part of having this disease. I often come across movies or hear of events I had no idea existed because they occurred during those "missing years" of my life.  I lost friends, dropped out of 'the race', and missed out on a lot of life because I simply 'couldn't'.  This is what lupus really does.  Yes, it kills, maims and hurts.  It costs billions every year in medical treatments.  It destroys families.  But what it does best is steal.  So, what to do when you steal your life back??

Blog, of course!

This is a perfect first blog post for this new website.  What better way to start than with a fresh slate?  I am officially lupus free!  No rash, no arthritis, no muscle weakness, no more pain or swelling and a normal ANA to boot!  UVA1 Phototherapy gave me back my life and I have the labs to prove it.  Even better--I am not the only one...check out some other success stories on my Testimonials page, you will be impressed, I promise.    

 

       

 

 




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