Light Sensitivity Sucks

You have no idea how frustrating that something like steeping outside to empty scraps cans initiation a flare of my autoimmune.  The flare is like being on top of a mountain making a snowball and rolling it down, and by the time he reaches the base the tennis ball is a wrecking ball.  Really any change can cause a cascading effect that disrupts daily function and can become very painful.

As of late as seen by previous post my eyes are the latest organ/body part that is taking a beating from the daily attacks.  As this year has progressed the issues with my eyes especially sensitivity to light, the dryness of the eyes itself causes light sensitivity for my eyes, while the drugs I also take can cause light sensitivity. 

As long as I stay in the pitch black with shades on and do nothing I can decrease chances of having a flare.  But really who wants to be stuck in a dark room like your Count Dracula waiting for the sun to go down.   So what is so bad about light?

Light indoor and outdoor triggers inflammation that starts in my eye and ripples down to other areas.   The inflammation of the eye feels the eyes like are pulsating, and if sun glasses aren’t put on immediately it can cause an epic flare that ripples through the body.   From the eyes the inflammation rolls down to  my parotid gland making me look like I am a cousin to Alvin and the Chipmunks.  The inflammation causes the saliva to back up cause it can’t get out  which can swell and even get hard as saliva fills up the space causing intense pulsating pain.  If that was enough the swelling wraps around the Eustachian tube straggling it causing another pain which is sharp pain, then the pressure moves on to the sinus cavity under your eye, while the glands along your jaw line also swell.

This is what happens if I leave the lights onto long and the culprit for the pain the LIGHT BULB.  Yes I said the light bulb because Europe and now the USA banned the traditional light bulb for bulbs that save energy.  I am all for saving money and energy the problem is the NEW light bulbs are BAD BAD VERY BAD for many with autoimmune disorders.  The bulbs I need are NOT carried in stores, luckily as with in law there is a loop hole and a company can make the old school indacscent light bulb with a name change.  So now I have to buy a box of light bulbs off line.

Thank-full the new My UNC Health link allows me to access my doctor's quickly, had to call in a prescription for steroids to try and get the inflammation under control.  I also got to figure out how in the crap I am going to afford the new eye get I will need for my eyes, since I have to have Preservative free the cost is freaking TRIPLE.  Literally my pharmacy bill will likely tip to $1000 a month if I want to be able to function and actual be able to do things with serious consequences.   Currently trying to figure out which brand to use how much it cost, and if I kind find coupons to reduce the cost. 

Painful Eyes

The lights off blinds pulled shut, the laptop on very low light, and a pair of shades on top of the head ready at a moments noticed.  A simple look out the window can cause instant pain, even walking around a store with just my shades cause pain meaning I have to put my shades shades on or what Tonya calls them Grandma Glasses.   Even with the blinds closed light still filters thru especially when the sun rises which is PAINFULLY in the morning, I rolled over this morning opened my eyes and immediately had to grab my shades and some pain meds.   I thought the pain from my torn ACL was bad but light sensitivity is far worse.

Right now it is 2 prednisone eye drops a day and Ak-poly-bac gel once a day and pain medicine.   I go back in the middle of the month to see if my latest inflammation and infection has cleared up.