Discussions that mention fragmin

Lupus board


HOLY VEE!!!

Its so amazing to see you!!!!!!!!!!!!!!!!!!!!!!! WOW its been so long :) YES I wear many hats these days... things have changed an awful lot since my days of single woman with Lupus. My husband is wonderful, understanding and is by my side every good and bad day. We take life as it comes. I had my baby almost 6 months ago, and had a WONDERFUL pregnancy full of happiness, Lupus FREE symptoms, and felt like a million bucks. I guess I almost felt like a "normal person" and thought maybe after the baby that I wouldn't have Lupus anymore.... wow was I wrong lol My story is so interesting! I was infertile before I got pregnant and ended up taking a medication for my pituitary adenomas and BANG I was pregnant in 3 months. No one told us that the med could make you ovulate!! I hadn't ovulated or had a period for 5 YEARS!! So our baby was a miracle through and through.

When she was born, something wasn't right. She had very large feet and had many problems that landed us in NICU for a long time (43 days to be exact). We found out during our second week that our baby girl had a very VERY rare chromosomal disorder called 9P Deletion Syndrome. So weird!! And her syndrome is not at all related to my Lupus, or the medication that I took before I got pregnant. It was basically egg met sperm and when they came together there was part of a chromosome missing on 9P. And the weirdest part of the whole thing is that neither my husband or I carry the gene for the syndrome! So the chance of it happening were 1 in a bazillion!!! She is our special angel for SURE! And she is the most beautiful baby... she has huge big blue eyes and a smile that wins you over in about a second!! She is doing great and trying so hard. She is behind "other" babies but we don't care. We take every day as it comes and she gets there when she gets there. And you know what? Its so much more rewarding when she does something for the first time!!! I cry because I am so excited!! She has a message for this world and we need to help her spread it to everyone.

SO... thats part of what is going on! I started going into a flare up about a month ago and it started with major fatigue and then I had a mini stroke (I am on fragmin for a blood thinner right now). We saw the Hematologist and he is switching me back to warfarin. I also have been very very weak, dizzy, have numbness and tingling in three fingers (just started today), and am barely able to get up and get motivated. The kids help me get going for sure, they are worth every minute of my day. But I have been sooooooooo tired. I was hoping my Lupus would just go away but it didn't. ANYWAY! Thats my story :) I sure missed you all and finally found time to get on here and find you all again!!!!

~Love Angelic