Hi. It’s kinda hard to type right now but I’d like to introduce myself. I’m Jen I’m 31. My symptoms began with ulnar neuropathy at 23. Since then it’s been a journey. But I never let lupus slow me down. I got married. Got a kid. God divorced. I was in full remission when pregnant. It was amazing. My beautiful daughter will be 3 at the end of this month. And I’ve been in a flare worse than anyone has seen for the past 8 weeks. I also have sjögrens, ciliac disease, and degos. The degos is dangerous. It causes open ulcers on your skin. Rare people also get those ulcers internally and can be very fatal from bleeding out without warning. So guess who that lucky one is. The treatments are high doses of steroids and rituxan/cytoxan weekly. I just got a picc put in yesterday. I inject myself in the thigh twice a day with 60mg of depomedrol. Yes, that’s 120mg of steroids a day. I’m so swollen I can barley find my mouth (much to my daughter’s amusement.) We moved in with my mom. Imagine going from single, full time, working mom to being 31 and asking your own mom for tp. Lol. It’s not all bad though. I was ordered on bed rest yesterday due to my picc being so fresh and my daughter (her name is zoey) climbs onto me and says, “mommy, your face is big and squishy.” I said, “yes baby. I know.” She said, “I love it!!! More for me to kiss and hug!!!”
From the mouth of babes. Welcome everyone. My hands are affected the worst. So even if you don’t see me respond, I’m always reading and sending good vibes. Happy Friday everyone !!!
I have a grandbaby almost 3 so I can just hear your little Zoey's voice and see the love in your eyes! Thank you for seeing the love in her but also I am happy to hear that you are with your mom! Mom's can be the best love and support you can have so praise her for her participation and support always! I know it's tough cuz I have a 36 yr old daughter with 2 boys, she is single and on disability because of her lupus, diabetes and other complications. I know a mommy's care and desperation for her ill child. Hang in there and give that baby big lovins!!
Welcome, Jen. You are a brave young woman. It is tough having what you have but then to become dependent at times on your Mom is even worse. My mom and MIL both helped me out and I loved it and them for it but hated having to put it on them too. Mixed feelings but I was so fortunate to have those two wonderful women in my life. They have gone to the other side several years ago and I miss them enormously. Hold your mom's hand and give it a squeeze if that is all you can manage. It will become a wonderful memory for you someday. And Zoey sounds absolutely adorable. Don't you just love her wisdom and outlook. Prayers and gentle hugs coming your way.
Love, love, love Zoey's comment!!! There is no one that can brighten my day like my 4 year old girl. I am so sorry you are going through so many trials and tribulations, I can't begin to imagine. I am praying that your health improves quickly, so that you can enjoy the upcoming holidays more fully with your sweet baby girl. Gentle hugs, momma!
Right now...not as much as I would like to Jen. Work takes much of my energy...but I love cuddling up with my little one and watching her movies and eating popcorn. :-) We have movie marathons. When I get up to go anywhere, I shake and shimmie myself and do a silly dance, just to hear her giggle...medicine for my heart. My little one is loving to learn how to cook, so she and her daddy have made me colored pancakes for breakfast and she has helped me make cookies (pre-made, pre cut) and love it. I help with the package and the oven and she places them on the tray. Nothing like a little hot and gooey chocolate chip cookies to make everything feel better. I skipping the halloween festival tonight at her school, as there is no way I could make it through the evening, but opted for a tomorrow afternoon church event which either my hubby or I can take her too. Easier in and easier out for all of us and no pressure to stay the whole time. Playing games with my little one is another area of fun....High Ho Cherrio and Uno Moo are particular favorites and don't take to long. Your mom would have fun joining in..and you could probably play both on the bed. Take care and keep smiling!!
Welcome Jen, so sorry to hear all of your problems and you are so young! I don't think I could have raised my boys if I had been diagnosed at your age. You are very strong, but thank God for your mother. Zoey sounds like a real treasure and so full of love. Keep us posted on your situation.
Those are all wonderful suggestions! Now just what to do with this pain and steroid induced insomnia. Lol. I have a feeling I’m going to like this place.
Sorry to hear of all your conditions. Hopefully the meds will begin doing there job sooner than later for ya. :) But main reason I am responding is that I just wanted to say thanks for the positive input on having a child with all the illness stuff. I'm only 28, and don't have kids yet, but really want some semi soon. And with all this lupus crap, it scares me to think about it. The fact that you had a good pregnancy gives me hope too. :)
Hope your day is going at least somewhat ok. :) *hug*
Hi!, kids have away of making things seem Okay!! They really understand Better than the adults! My grand kids ate wonderful for that. The oldest one has been there for my spirits since I was diagniosed and now her brother , who is 2,he will be 3 soon try’s to help also, -they really try to help me do alot of things , I think the best part for them is when I wash. The g-son loves putting the clothes onto the dyer when I take them out the washer! It is so cute. My g-daughter like to sweep and wipe down the furniture , it is such a Beautiful sight to see little ones help me! It bring tears to my eyes, cause they really don’t understand reality Yet!! I Love them Dearly. And they don’t judge me ! And in return I always tell them , Am going to dance at their wedding! Then we all jump around for a few mins. And do the group hug…Beverly L.
I was in full remission when pregnant. It was amazing. My beautiful daughter will be 3 at the end of this month. And I’ve been in a flare worse than anyone has seen for the past 8 weeks. I also have sjögrens, ciliac disease, and degos. The degos is dangerous. It causes open ulcers on your skin. Rare people also get those ulcers internally and can be very fatal from bleeding out without warning. So guess who that lucky one is. The treatments are high doses of steroids and rituxan/cytoxan weekly. I just got a picc put in yesterday. I inject myself in the thigh twice a day with 60mg of depomedrol. Yes, that’s 120mg of steroids a day. I’m so swollen I can barley find my mouth (much to my daughter’s amusement.) We moved in with my mom. Imagine going from single, full time, working mom to being 31 and asking your own mom for tp. Lol. It’s not all bad though. I was ordered on bed rest yesterday due to my picc being so fresh and my daughter (her name is zoey) climbs onto me and says, “mommy, your face is big and squishy.” I said, “yes baby. I know.” She said, “I love it!!! More for me to kiss and hug!!!”