Just another day at the ER!

So Thursday night I started having some really bad cramping, like period cramps (sorry dudes! just a little female chat! Feel free to keep reading if the "female problems" discussion doesn't bother you!). But here's the problem with that - I wasn't due for my period and I don't really get cramps anymore since my IUD about 4 months ago. This is when it hits me - THE IUD!! Maybe its moved or something. So I tough it out Thursday night, and I really wasn't tough at all, cried and the whole nine yards! Friday AM I get up and call my OB/GYN and tell them about the symptoms that I am having. She says my Dr. is off but the nurse will do an ultrasound to make sure everything is ok with the IUD.

I race over to the dr and get the ultrasound done - internal ultrasound - need I say more..... Anyway! Everything is fine "down there" and the nurse says we can schedule you for a formal scan next week just to check your ovaries etc, but if you continue to have pain over the weekend you may need to go to the ER. (btw - that is my least favorite phrase EVER!)

Like most people I HATE the ER! I hate seeing a Dr. who doesn't know me or anything about my conditions especially EB. So Saturday I take my 800 mg of Motrin and go about my day, same thing on Sunday. The Motrin isn't working that well so Sunday night I take some Tylenol on top of the Motrin. I was in so much pain Sunday even through all the meds that I started to throw up. At this point, it was basically too late to go to the ER b/c Shaun had to be at work at 3:30am.

I waited until he got home from work at 8:30 and called my regular Dr. who told me .... go to the ER! DAMMIT! So off to the ER I went. I got there at about 8:45 and was finally released at about 4:30 yesterday afternoon. After a blood test, a urine test and a CT scan I found out that I have a VERY nasty UTI AND a hernia! a HERNIA! WHAT!

So I am on pain meds and another antibiotic and have an appointment with my Gastroenterolgist (sp?) to talk about my hernia!

Just wanted to update everyone on whats new with me! I guess its nothing new that I'm sick - just a different kind of sick this time!

Need Your Help

The last week in October is National Epidermolysis Bullosa Awareness Week. I really want to do something big this year to help raise the awareness of this terrible disease. Those of you who know me know that I am having a much harder time now than I have in the past. Even with as bad as my skin is now, it is nothing compared to some other children that are dying as you read.

So - I need your help, support and ideas - PLEASE comment on this post any ideas that you might have that I can do or organize or help with something that is already going on. My ultimate goal is to educate as many people as possible to help raise awareness and raise some money in the process for research.

ALL IDEAS ARE WELCOME!!

Oh what a crappy day!

So, most of you know that my skin has been a terrible mess - worse than "normal" lately, well I had 3 dr. appointments today. The first was with my OB for my normal yucky appointment, as if that isn't bad enough for a day - try to do it covered in blisters - I feel bad for my dr - who audibly cringed when he saw my sores today. So straight from there I had to go to my dermatologist for a "follow-up" and while there I had an appointment to get my pictures done. And, by "pictures" I mean, I wasn't sitting in front of a pretty country backdrop having some headshots done. Oh no! I mean pictures of all of my sores, I thought the nurse that stood in was going to puke or cry.

The derm did a SCC check to make sure that we weren't missing anything did a biopsy of a spot on the back of my hand and as I type the numbing meds are wearing off and HOLY CRAP that hurts!

I was in so much pain on my way home for the dr. that I wasn't able to go to the pharmacy to get my scripts filled, not to mention I had bled through my shirt in 3 different places. On my painfilled drive home my husband called to tell me that I finally got my letter from Social Security regarding my disability claim and OH WHAT A SHOCK - it was denied! so let the waterworks begin - I just cried the rest of the drive.

Imagine missing 50% of your skin from your trunk, feeling like you have been set on fire, and bleeding from both of your armpits to be told by a government agency that your condition is "not severe enough" - ARE YOU F-ING KIDDING ME!!!!

anyway - my hand is throbbing and my legs feel as though they have been set on fire and I'm just too damn depressed to keep yipping!

Sorry to bitch my way through this blog - but I really needed to vent and my mouth is so broken out that talking hurts so I just couldn't call Tami.

Thanks for "listening".