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JenCalle
07-09-2012, 08:29 AM
Hi there, I am new to this site but not new to lupus. I was first unofficially diagnosed with lupus six years ago from my daughter's cardiologist. I took her in for what I was told would be a baseline check of a slight murmur that was heard, and learned that she had complete heart block and I had to have lupus, in order to give it to her. I probably always had symptoms, but every doctor I went to told me that it was all due to having hypo-thyroidism. So when I went to my normal doctor, and informed him of what the cardiologist mentioned, he took one look at me and told me there was no way I could have lupus, I did not have a rash on my face. At that moment I knew it was going to be a long haul to getting properly diagnosed. Which thanks to a primary doctor who actually listens, confirmed with several blood tests only two years ago. My daughter is doing fine now, she has a pacemaker, and a fantastic cardiologist who watches out for her. I have two other kids as well. They are older than my daughter with the heart issue. I have one who is perfectly healthy, and one who is in good health, just some breathing issues.

I just thought I would come in and introduce myself. It is nice to have a place to come and tell my story to. I feel I am surrounded my people who love me, but no one who wants to talk to me about how I feel. I think it is because everyone wants to think that I really am ok. I don't look sick, I still work full time, and raise three great kids. But I sit more than I stand, I go to bed before my kids (they tuck me in at night), and when I try to say something to my parents, they shrug it off, and change the subject, my sister I think has already planned my funeral, and then there is my husband. I think he is the hardest one to deal with, about it. When I don't feel well, and just want to vent, I am told to take some medicine, and my favorite is last night when I was trying to say something. He tells me, "Well it is good that is only your joints that are inflamed and hurt. I could be worse it could be effecting one of your vital organs." What are you serious, what are ct scans for my lungs every year for the spot on them about, or the heart checks because my heart now beats irregularly, or the thyroid that is called lumpy bumpy, and pushing on my windpipe, making it hard to breathe. Or the allergy to the sun, where I can't be out in in for more than an hour, with lots of covering, and sunscreen. Those are not just joint issues! I think there are a couple vital organs in there.
Sorry, just had to vent there. I just am feeling like this stupid disease is getting so much stronger than I am
and it is making me very sad. So I thought who better to vent to than a group of people who may be feeling the exact same way.
So thanks for listening

steve.b
07-09-2012, 09:13 AM
hi jen.

it is possible that the thyroid problem is a side effect of lupus.
many f us have thyroid issues.

may i suggest you see a rhuematologist. they specialise in this type of disorder.

also please take the time to read a few of the older posts.....
they are our personal experiences with lupus.

tgal
07-09-2012, 11:00 AM
Hi and welcome to WHL. We are so glad to have you. Many of us go for years without a firm diagnosis and/or are misdiagnosed. We completely understand what you are going through. Feel free to ask questions or start conversations here. You are now a member of the WHL family and we welcome you!

jmail
07-09-2012, 05:14 PM
Hey JenCalle! Be sure and read the "stickies" at the top of each sectin of the board... Ask questions, vent, just say "hey!", etc...

kim,l
07-10-2012, 05:16 PM
hello and welcome to whl family you are welcome to vent anytime we are here for you. i also have thyroid problems with my lupus as does my daughter she also has heart issues seeing a rhuemotologist is the way to go. good luck