Thursday, April 30, 2009

I have to stay inside today

Well for most people when they wake up to the sun shining it gives them a warm fuzzy feeling inside. However, it reminds me that I can’t go outside today. I have a severe photosensitivity to the UV in the sun or any fluorescent lighting and or any lights that are unprotected UVA & UVB lighting. My rash this morning is pretty minimal, so if I go outside or have too many lights on in the house it will cause my skin to have what looks like an allergic reaction, but my body processes it as a toxic reaction. That's o.k. anyway, I am staying inside because as I thought yesterday, my doctor changed one of my medicines yesterday and this is my second day trying it out. Most of you remember that I had the Lap-Band surgery while I lived in Italy and one of the first things that they informed was..."you cannot take timed release medication". Well I am out of options and yes, they did put me on a timed release medicine that wouldn't you know it is in the shape of a square! I am following doctor’s orders and then rolling on the floor from side to side, etc. to try and get it down into the bottom of my stomach (just joking). It's not that bad and seems to be passing through fine. I am doing much better so far this morning than yesterday, which may be due to the fact that I don't have to go to a morning appointment. My daughter's friends think that I am a vampire and find it interesting that I am "allergic" to the sun. It is kind of funny, but when it is so beautiful outside and I would like to get some fresh air for a while, what I have to do to get myself ready to go out, the thought alone is exhausting in regards to the amount of preparation and energy it will take to do that. If you are interested in reading more about Photosensitivity in some Lupus patients (I am one of the lucky ones) please click this link below. Love to you all and cheers to a good 1/2 day!



mjbarnhart said...

To the Vampire Lady - a poem...

There once was a sweet girl named Loretta.
Who could do anything but the disease wouldn't letta.
So John bought her some drugs,
And gave her lots of hugs,
In hope that she would feel much betta.

Seriously - thank you for doing the blog. I want to know how your days are going without NASCAR crashes and Burger King butts interrupting us. Thinking of you often...

Mike B.

LFA said...

Hey there ... my name is Wick Davis and I'm with the Lupus Foundation of America. I came across your blog and wanted to say hi. I'm in the process of reaching out to other lupus bloggers. I was wondering if you'd be interested in exchanging links to one another's blog. You can read the LFA blog here I have already added a link to your blog on the LFA blog, in the section called "Lupus Blogs We Read." I would love to talk more with you. You can reach me at I hope to hear from you. best, Wick