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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!


Dilation, Driving, Darning and Dust

I am not in love with going to the dentist. I am pretty sure that not many people are. I appreciate a good teeth cleaning but definitely do not count the days until I see them again. I do really like my dentist and his staff, don't get me wrong, and they give me coffee and cookies and play Pandora while they drill and polish away. 

My annual eye exam, however, is the routine maintenance appointment that I find myself dreading the most. I often delay it for months if I can. This week I was reminded again of why I have learned to dread these innocuous visits. 

This!


Alas, the dilation...I tried to get out of it but since I had used the same excuses for two years running it was time. I knew it would screw up the rest of my day but I agreed to proceed. My eyes twitched in protest as each drop slowly dripped from the bottle and landed on their intended target. Before long as I had predicted I couldn't see and everything had a rather pleasant although very bright haze around it. 

All was well in the back of my eye and before I knew it they had escorted me up to pay.

Hold on...let me just find my debit card. I rustled around in my baggage swearing to myself that I would go get the new purse I have had on my to do list for years now. A smaller purse. For sure!

"Would you like to look at glasses today?" She asks with what looked to me to be a smile. But I couldn't really see her face so it may have been more of a grin. I am guessing that they see this every 5 minutes and if I worked there, I would come to enjoy the spectacle I'm sure. I would probably even participate in the wagers on who gets the ugliest glasses or takes the longest to find the right card. Cruel, but a good way to get through the monotony of a work day I am sure. I finally found the card and slapped on the counter as I squinted in her general direction. 

Back to the glasses.

You are KIDDING me, right?? I'm not falling for this again (I said to myself). Last time my glasses were horrible. Once I could see them-after they had been ordered, picked up, and exchanged that is. Not even close to the shape that fits my challenging facial physique. 

How many people come back the day after picking up their new specs and demand to exchange them because at the time of purchase they could not in fact SEE what they were choosing. I mean, it is so ironic that this whole affair is about seeing...yet, when you pick out the most expensive (and that does tend to happen when you can't see the price tag) item of the day's ordeal there is no warning from these eye defenders, these eye doctors who are there to 'help' and guard your vision. They don't tell you the price until you are sure that you have picked the right pair. After you try them on, compare them to 5 other pairs, and try to "see" which looks best hours have passed and it is just time to go. The price announcement just doesn't seem to be as effective as it might have 2 hours ago in regard to stopping power. You just don't want to go through the try on thing all over again.

I am also pretty sure that they are not always being honest when you ask them which pair looks better.  Maybe they are. Maybe they aren't. 

Then there was the driving.

Is it legal to dilate and drive?? Should eye doctors across the country really be dilating patient's eyes and sending them out to drive home with their, "Have a nice day" and a smile? This isn't funny. It is treacherous! Maybe I was just younger and more carefree before but I don't recall being so nervous driving home. Not since last year's reign-of-tornado-terror-storms anyway...let alone after a doctor appointment. 

But I made it. I sighed with relief as I put on my sweats and fumbled around for a pair of socks. Found them...yay, comfy clothes!

Then THIS:

I could feel the coolness of the wood floors mocking me and my sock. I don't know how to darn! What the sock?? I just bought these...!! What do you do with one perfectly good sock and one of these? How does this even happen?! I was so disappointed. And now I had to fumble around looking (er, feeling) for a clean pair of comfy socks. 

As predicted, not much else was accomplished after the dilation.

I got up the next morning and with a renewed sense of possibility I put in the new sample contacts I had gotten the day before. I was excited - it had been a while since I tried contacts and my glasses were always in the way, dirty, and I just wanted another option when I wanted to clean up. 

Then I saw...the dust.

What I thought was clean before inserting these seeing aids was now clearly NOT clean. On one hand, it was nice to know my updated prescription was worth the dilating and driving. On the other hand, I am seriously contemplating not wearing the new contacts. I didn't want to see this so clearly. Dust everywhere! I just cleaned the whole house but I had done it in a blind sort of bliss I guess. Explains why it was a quick clean. That Swiffer was NOT doing an adequate job and I didn't realize this until I could actually see. Oh the pain...how long had my house been like this? How many people had come through and seen 'the dust'?

 

I am not one of those people who won't let anyone in until the coffee table is perfect and I have a plate of made-from-scratch (this morning) cookies out, but I do like to project an illusion that we clean on a regular basis. Was the blurriness I was experiencing before the dilation actually a vision decline or was it just all of this dust? It was everywhere, surrounding me, overwhelming my senses and mocking me just as the sock hole had done a few minutes ago.

So I dusted. And dusted...

Now way off schedule I again tried to sit down at my computer and get something accomplished. This is when my day of D came full circle. After 24 hours of dilating, driving, not darning and now dusting I couldn't SEE a thing! Not one little word on the computer jumped out at me as recognizable. Just more blurry. Blurry words, blurry pictures. The new contacts helped me see dust but they were no good at close range. From one blind to another. I called my eye people and asked them why I couldn't see if this was in fact my new and corrected prescription. They were patient and gentle in their reply.

Come to find out, I am at 'that age' where it is time to consider bifocals. Gasp.

So are you telling me that now I have to put on a different pair of glasses for everything I do?? This won't be complicated at all by the fact that I am already constantly losing my glasses. Not at all. 

I decided that I had endured enough 'seeing' for the year. I thanked them for the tip (you can get cheap readers and wear them over your contacts to adjust). The bifocals would have to wait. And this is why I dread the eye doctor, more now than ever.  


Social Media Mania

I used to think that I was tech savvy.  

I can type 125 wpm, I know how to use a lot of software, I've conquered Microsoft Office.  But the internet...oh the internet!  Social media is kicking my butt and I fear that I am waging a losing battle.  

I graduated high school the year that the world wide web hit the scene, 1995.  Back then we still did our typing class on type writers.  Well, kind of.  There was no such thing as Facebook or Twitter.  But you all know this so I digress...

I know nothing about social media and it is painful.  I need staff.  Immediately.  

In my excitement over this project--spreading the word about lupus and UVA1 Phototherapy and how it gave me my life back--I signed up for it all.  Facebook Page, Twitter, Google+, LinkedIn...check.  What I failed to realize was that companies HIRE an entire staff to do this stuff.  Now I know why this is a major program of study. I may have gotten my life back from lupus, but I sold it to the social media devil in return!  

I find myself spending entire days trying to connect accounts, re-post links, look up acronyms such as 'SEO', and configure my 'settings' to achieve optimum exposure.  Instead of finding more research, reading said research, or adding things to my website I end up watching an entire playlist from 'YouTube Academy' or 'Google Analytics Academy'.  I believe that re-sizing stock photos and actually linking a correct H Ref onto my website is to-date my biggest accomplishment.  I spend my evenings trying to shake off the continually mounting feelings of not getting anything accomplished and drowning my sorrows in organic beer (okay, not really but in a perfect world...)  I regularly set aside the urge to make emergency calls to any one of my nieces who are in grade school and can probably do most of this in their sleep.

It is what it is.  Looking back over the last year or so, I do however have to laugh at some of this.  Until about 2 years ago, I was on Facebook but I had really only used it from my iPad.  It is much different on a desktop.  For instance, the little box in the upper right hand corner constantly alerting you as to what your friends are liking or sharing.  That box isn't on the iPad.  I had NO idea that everyone saw every 'Like' I clicked on.  I really thought I was just liking things because they appealed to me.  I didn't know I was sharing too much-I simply thought I was saving these things I liked on my timeline for future reference.  I did not really understand how FB worked.  I definitely did not know that there was such thing as FB etiquette.  Ah, yes, etiquette...

I did not know there was a proper way to use social media, nor did I know the threat of improper usage.  Not until I heard a litany of criticism that is...

"You like too many things..."

"I am beginning to think you like EVERYTHING, is there anything you don't like?"

"Please don't share something unless you write a statement supporting it."

"Snopes says that is bogus!"

Among many other tidbits of feedback, I suppose that this was my 'Facebook Academy'.  I even got to experience the sinking feeling of knowing someone had just un-friended me.  Because I like too many things?  I post too much on essential oils?  What gives??  I thought we were friends...!  

Well, now I know.  Can't get those 'friends' back, but I can protect the relationships I still have.  I get it now.  While social media is amazing and can further the reach of any cause, it can also hurt.  I do like a lot of things.  I like to share these things in case the merits of Lavender essential oil make my friends feel equally informed.  But I now understand that not everyone wants to see a chain of posts from Natural Solutions-perhaps sharing just my favorite ones will do.  I apologize for my marathon likes, my over zealous sharing, and perhaps irritating to some in-the-moment posts.  I don't apologize for not knowing how to unlink my FB and Twitter accounts in case you are besieged with multiple posts.  I am learning, have patience.  After all, my intentions are good!  

So, I relax now, take a deep breath, and watch the next video in line. 

 


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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