hi there. I'm new here my name is Amber I'm 29 and was diagnosed right before my birthday in October. I am a stay at home mom to 3 1/2 year old Felix who is in special ed preschool 5 days a week in the mornings and soon to be 2 year old ( in March) Dominik. to bring in extra money I babysit a 2 1/2 year old twice a week. I've had years of pain and my Dr telling me I just wanted pain medicine and made to feel insane. I finally listened to my mom and husband and went to a new Dr and one blood test later I tested positive for lupus. I have now been seeing a rheumatologist getting loads of blood work done to get more specific answers. it's scary but at least I know I'm not crazy and there's a reason I'm so tired, always hurt, and get migraines. I don't know what symptoms I should tell the rheumatologist about though I'm still nervous about being made out to be just wanting medicine or anything crazy. currently im on plaquenil and topamax. I just want to be the best me I can be for my kids I feel bad for them. they are so young and they have a sick mom. thus is longer than I expected but just wanted to say hi lol
Hi Taesra,
First, I want to welcome you to our LWL support family. We are glad you are here and feel free to unload on us. We are here to support and encourage one another.
I am glad you went to another doctor who found out your real issue. Many can identify with you and there are a lot of young moms also. You are not alone. With time the plaquenil will give you relief and will help. Take care of yourself when you have time. Rest is important. Did your doctor check your Vit. D? Pain will often deplete our supply and worsen the pain.
I wouldn't worry about about thinking what others think. Unfortunately we who suffer need the meds and are thankful to have them. Just follow the instructions on your meds and take as the doctor prescribed. Keep them in a safe place so the children will not touch them. (My kids are grown) but I always was concerned about that.
I always find out when we have to suffer as a mom, God gives a g'ma, husband, aunt, friend, neighbor to help meet some of those emotional needs for the children. He makes it up to them when you do all you can do. It is beyond your control.
We care about you and feel free to message any of us. I hope you are smiling now ...knowing you are not on your "illness jouney" alone.
Hugs,
Faye
Hello Amber,
Welcome to the site and also expalining your situation about your Lupus and also your daily life plus it's a good vent out which helps we all :)
Well lets hope your bloods confirm what's really going on otherwise and i am pleased you listened to your mom and husband and saw a rheumo who was concerned as they are out there but it's finding the right one for each of us.
Your not on your own having children so young besides being ill...we do have other members in the same boat but just do their hardest to cope that's all you can do.
I really do recommed though watch how active your trying to be and when Lupus hits we it's all about pacing your daily life to suite yur body besides taking breaks in between, if you still try and go mad your symptoms will feel alot worse the next day.
All my love Terri xxx
I'm learning to rest which is hard. I feel like I never accomplish everything I need to and my house is a disaster it's so frustrating!!! last night I got sleep and zero help today and lots to do tomorrow but I know I need to rest tomorrow or I'll regret it. it's so hard though!
Amber don't worry the disease is a right nightmare to alot of us but please don't mentally give in or let it beat you as it's not worth it...you'll never accomplish everything...that's why taking it steady daily and doing it then but always break in between...when you feel you've achieved a good certain anount rest my friend and if you have family who love and care about you otherwise, they'll surely understand.
I suffer with bad OCD so imagine what my head goes through daily...it's a living nightmare for me :)
What is "OCD.?"
Tez_20 said:
Amber don't worry the disease is a right nightmare to alot of us but please don't mentally give in or let it beat you as it's not worth it...you'll never accomplish everything...that's why taking it steady daily and doing it then but always break in between...when you feel you've achieved a good certain anount rest my friend and if you have family who love and care about you otherwise, they'll surely understand.
I suffer with bad OCD so imagine what my head goes through daily...it's a living nightmare for me :)
Hello USAGURL,
OCD is "Obsessive-compulsive disorder" which can come on through physciatric problems, bipolar - which caused mine or comes on naturally.
With me it's a bad cleaning disorder nothing can be out of place besides everything as to be clean, it's like living in hell mate and it's controlled me more the older i've got.
This link covers the lot on OCD :)
http://www.helpguide.org/mental/obsessive_compulsive_disorder_ocd.htm
I'm sure my husband wishes I cleaned that much but with kids on a good day I get hardly anything done!!!! I just want to get everything done for once in my life feel accomplished ugh.
Hello Amber,
I do the best i can getting around with a rollator but i'm resting all the time my hubby as took aload on in the last few years while the sjogren's, lupus and muscle atrophy as really took me down but if i see anything out of order i tell him...the condition mentally plays with your head.
Well on a good day your kids are going to want you attention more when your feeling abit better.
There's a member on the site who's had good days and gone mad cleaning and it as mad her ill the next day, that's why cleaning or anything in general as to be paced.
I hope your weekend is a nice one :) xxx
Taesra said:
I'm sure my husband wishes I cleaned that much but with kids on a good day I get hardly anything done!!!! I just want to get everything done for once in my life feel accomplished ugh.