Little bits

I have my good days and my bad, I have a lot of days that I would't get out of bed if I didn't have to. Those days I think of hidden blessings, even though I don't want to move because it hurts my little one makes me prove to myself that it is still possible, at much slower pace mind you we're still able to get through the day.

Days like today.... My skin has on my face and my arms has started to get little raised bumps on it, it is FRIGGIN itchy so friggin itchy I kept waking myself up last night scratching :( and because I have the rash I've upped my meds which makes my tummy troubles at an all time worse! I crawled out of bed this morning got the monkey up changed her bum and put her in her high chair for her cereal and milk I turned the tv on and bolted to the bathroom. She'll eat her breakfast and yell at me when she's done, I get her cleaned up and then go back to the bathroom and wait for the rumbling and pain to stop.

Magoo bless her little heart, I was still in the bathroom TWO hours after she had finised her breakfast she didn't get fussy once, she didn't bring me her shoes and scream OUT! OUT! (she normally does this AS SOON as she is finised breakfast!) She played with her fisher price farm for a long time making all the sound effects, she brought me a ton of her books and we read them right there in the bathroom. I ask myself at the age of 19 months how can she possibly understand.... but somehow some way she gets it, at least thats what I had convinced myself of sitting in the bathroom this morning.

After lunch I made a point to slather us both in sunsceen and head out for a march march march around the block (the goal really was to poop her out before nap time so that mommy could sleep too) but wouldn't ya know even though we walked ALLLLLLLL the way around the block in the blazing heat of the day the little stinker talked to herself in her bed for an HOUR AND A HALF before she finally fell asleep half an hour before daddy came home! So lesson learned appreciate the little bit of understanding whenever I can get it, because chances aren't it won't last long :)

The ugly coat!

So today is the day... the day I dread every single spring the day I have drag out the ugly coat (I really shouldn't be bad mouthing my coat but it's ugly). Right about now you are asking yourself; "why would someone be getting a coat out at the end of May?" Ah but you see my friends I am not your average gal. I have LUPUS*** (see below for text book definition)

So to explain briefly one of my biggest triggers when it comes to my Lupus is the sun. The easiest way to explain is that I am allergic to the sun, my body can't tell the difference between good and bad so a little bit too much sun can cause one of the grossest rashes you have ever seen and OMG does it friggin itch. I mostly get the rash on my face (Yay!... NOT!) arms and ears. It almost looks like a sun burn gone horribly wrong, raised red bumps, scaly skin, not pretty by any means!

So getting back to the coat, it really is a great invention made by a company called "Sunveil". Thier special mesh material blocks out the UV's while still allowing me to feel the breeze. (see picture below). I have the coat in black and have had my coat for at 4 years, when I originally ordered the coat I was a much larger girl, so now it's a little big, the original coat cost $260, so it's one of those things I haven't bothered to replace in my current size. So now you're thinking hey that doesn't sound so bad, I mean it's ugly but it's ugly with a purpose (been repeating that mantra to myself for quite some time, I still don't believe it) See do you know what the REAL problem is.....????

When I put that coat on it's like I'm announcing to the world: "Hey I"m different!!!" During the colder months I get to blend into the crowd, dressing and looking like everyone else, but come summer I've either gotta wear the Ugly coat or a long sleeve shirt or run the risk of getting a sunburn (in as little as 20 minutes) and being covered in my rash for the entire summer, once it starts it's pretty hard to get rid of until the weather cools down. The shitty part about all of this is I can no longer spend my summers hiding in the house or in the shade of my beautiful gazebo (I love my gazebo) because my little one is 19 months old and on the go ALLLLLLLLLLL the time :)

This morning I realized I was itching my arms like crazy, uh oh feeling over the area with my hand I realized the bumps were starting.... And so out comes the damn coat and my little one and I set off for a walk. So I've had the coat on maybe for 5 minutes and the first comment of the season, the little old lady on the corner who I know doesn't mean any harm says "Oh my you're making me hot looking at you! Why such a big coat on a warm day?" to which I give the usual answer "I'm allergic to the sun gotta stay covered up up." With a fake smile. And she says "Oh I'd stay in the house and never leave!" I wanna scream "Gee you think I haven't thought of that?".

I do realize she was trying to be nice, making conversation or some other stupid assumption, I get it I really do but geez I was already hating the coat and I still have to wear it for another 3 months at least! So please if you see me in my ugly coat please don't call attention to it, I'm already not happy about having to wear it!

*** Lupus
taken from: http://www.healthline.com/adamcontent/systemic-lupus-erythematosus?utm_medium=ask&utm_source=smart&utm_campaign=article&utm_term=Systemic+Lupus+Erythematosus&ask_return=Systemic+Lupus+Erythematosus

Definition Systemic lupus erythematosus (SLE) is a chronic, inflammatory autoimmune disorder. It may affect the skin, joints, kidneys, and other organs. Alternative Names Disseminated lupus erythematosus; SLE; Lupus; Lupus erythematosus Causes, incidence, and risk factors SLE (lupus) is an autoimmune disease. This means there is a problem with the body's normal immune system response. Normally, the immune system helps protect the body from harmful substances. But in patients with an autoimmune disease, the immune system can't tell the difference between harmful substances and healthy ones. The result is an overactive immune response that attacks otherwise healthy cells and tissue. This leads to chronic (long-term) inflammation.