[RebeccaC]

Hello, my name is Rebecca. I am 30 years old and was diagnosed with connective tissue autoimmune disorder, Sjogren's, positive Thyroid antibodies, and my doctor says she's 99% sure I have Lupus. I was diagnosed almost 3 years ago. I have a positive ANA but my sed rate has always been okay so that's why she still diagnoses me with non-specific autoimmune connective tissue disorder.

It was about 6 months of going to different doctors and spending a fortune on testing before I was finally referred to the right doctor. In the beginning I had hair loss, severe dry skin, severe dry mouth and dry eyes. I had worn contacts for 10 years and suddenly my eyes felt like sandpaper when I blinked. I was very weak and tired and felt like I had the flu. I also would sometimes get ulcers all in my mouth, too many to count sometimes.

My symptoms all were triggered I believe initially by taking birth control pills. I was about to get married and almost immediately after I started taking the pill I started having all my symptoms. I've read on different sites that some people with Lupus can't take birth control because it can trigger a flare, but I wanted to make a point to put that information on here, because I know I would have had a flare eventually but I think taking the pill is what initially caused all my symptoms to appear.

I have taken rounds of Prednisone and took Plaquenil for about a year. I gained about 20 lbs from the steroids and have not been able to get the weight off. My husband and I decided we wanted to try to have a baby so I quit the Plaquenil during that time and have not started back again. Due to infertility in both my husband and I, we just adopted our first daughter. She is 4 months old now and the joy of our lives!

At this stage in my life, my biggest problem is fatigue and a husband who isn't the most sympathetic to my illness. I have recently been having problems with bronchitis and breathing problems and I'm really afraid it might end up being something related to my Lupus. I have a history also of Mitral Valve Prolapse and low platelets since I was a teenager.

My sister has a thyroid disorder but besides that, I have no friends or relatives or know anyone who has gone through all the things I've been through so I'm so thankful to have found this forum.

I would love to get to know everyone on here!

Rebecca

 

[LolaLola]

Hello Rebecca,
Four months old-how lovely. I hope you are spoiling her rotten, taking loads of photos etc. What is your Daughter's name?
ESR is not a very reliable indicator, it can be normal and you feel dreadful or it can sometimes be raised when you feel okay. At least with a little baby when you are fatigued you can cuddle up with her. Rest as much as you can, and do not worry about having an immaculate house. I never did and my children grew up in spite of it. Children remember if they were played with, they don't remember if you ironed their pyjamas!

Sorry to hear Hubby is not very understanding, do you think he is in denial? Men get some strange ideas, mine ,even after many years of me being ill still dreams that there is a cure in the Rainforests just waiting for me!

It is an almost Universal rule that your friends will not understand what you are going through. Lupies NEED other Lupies!
Have a good day,
xxx Lola

 

[Katharine]

Hello Rebecca and welcome

Congratulations on the adoption of your daughter :eleph:

Reading through your post I was just wondering - have you been started back on plaquenil? It is very odd that you were taken off it as it is actually very safe during pregnancy and it is far more risky for someone to be taken off it than to stay on.

I would be asking your rheumy about going back onto plaquenil as quickly as possible as it is disease modifying and could significantly reduce the severtiy of any future symptoms.

I would say that it is important to make sure all this is followed up properly, especially as you are now a mum and that that little one, adorable as she is, will be taking a lot out of you.

The "triggers" for lupus are so varied and many are only suspected. It is impossible to say exactly what caused your lupus to show up.

bye for now,
Katharine