Fairly New 8 years with lupus

lulumomof5 · Posted: Sat Sep 18, 2004 3:02 pm Post subject: Fairly New 8 years with lupus

Hello Everyone!

My name is Lucy I live in Seattle Washington. As you can all tell by my name I have 5 kids! Exclamation

Yes, 5 KIDS! 13 yr old girl, 12 yr old boy, 10 yr old boy, 8 yr old girl and last my baby she is 24 month old on 9/2. And, lupus. I first got sick when I was pragnant with my 4th child. It took ages to get a dx of any kind and 4 MD's and 2 hospitals. It was hard times back then. I was told it was all in my head, that all I had was fibromyalgia.
After changing many doctors and trying to keep my sanity, I found my team of doctors. Since, I have never gone without proper pain control! That was the battle I faced before I found my MD's. Having went through all that I feel I have learned a lot about myself. I learned that places like this (support forums) are a huge source of love, support, strength and great source of inspiration. So I am back. To be part of a support group for other were I can. Get support here and there when I hit bumbs in the road.
To date I have heart, kidney, lung and brain involvement. Today I am fairly well aside from the normal day to day pain. Arthritis in many joints. The constant exhaustion has just become part of my everyday life. Learning to except this newer way of life has been more than a little difficult. I think I am over the hardest parts of it all. Learning to just let things go was the biggest leason. It's ok to have dirty laundry and dishes go undone from time to time. Laughing

Out of my 5 kids, 2 of them have shown signs of auto immune related illnesses also. My oldest has thyroiditis and has been a huge sorce of fear in my life. She has had it now for 2 years. She has blood tests every 6 months and as needed. Recently she now also has knee pain and fatiuge. My middle daughter has a bunch of labs that seem to point to sonething going on. However, as of now has no symptoms. Her ANA has been fairly high since she was 2. She has many others we test every year also.
My youngest son was born with severe asthma that almost took his life at 5 months of age. Seems illness runs in our family. Not to mention in my extented family I have sevral cousins and aunts with diseases from lupus to sclaraderma. And, I was told auto immune diseases don't run in families! #Mad

Anyhow, that's abit about me and my family. Can't wait to get to know you all. Thank you for welcoming me into your forum. Be well everyone, ~Lucy

Missy · Posted: Tue Sep 21, 2004 6:34 am Post subject:

Welcome! I also have lots of family members with auto-immune diseases....

Just wanted to say hi. I live a bit North of you and went to Seattle to see a Nephrologist, just for a second opinion on treatment in June. Actually, I'm going to be in Seattle on Oct.2nd for the Lupus Walk witht the LFA- Pacific Northwest Chapter. I've been raising money, and am looking forward to it.

Missy

Saysusie · Posted: Tue Sep 21, 2004 7:33 am Post subject:

Hi Lucy

Welcome to our forum. I read your post in Lauri's Lounge and responded to it!
I was, at first, told that auto-immune diseases did not run in families. Like yours, my family is replete with some form of auto-immune illness and they have now found that it is, indeed, genetic and that some of us are genetically predisposed to having Lupus!
One of the worst things, for all of us, is to have to deal with a doctor who is not knowledgable about our disease and who, therefore, tries to minimize our symptoms so that they do not have to deal with them. This, alone, can sometimes make us suffer almost as greatly as the symptoms. I am so happy that you stood up for yourself and finally found a team of doctors who are more interested in giving you the best quality of life that they can! It is a struggle and a fight that we have all had to go through.
With reference to your children, since you are so educated about auto-immune diseases, you are taking the proper steps in making sure that your children are tested and that their symptoms are taken seriously.
You are an example for us all!!
I wish the best for you, your children and your family.
Once again ..... Welcome. We are lucky to have you here
Peace and Blessings
Saysusie

montice · Newbie Alert Joined: 20 Oct 2005 Posts: 4

HI
I know it has been a while since you posted, but I was wondering if I could talk with you about your pregnancy. I have had lupus for 8 years now, since 1997. Since then my lupus has been quite and I am now interested in starting a family. I was told that the first 3 months would be the hardest with my lupus and if it was going to flare up that is the most likely time, but not the only.
If I may ask, did you have trouble with you last baby? Was it from your lupus? I have other issues, I have a kidney transplant and high blood pressure, so I know that it will be HIGH risk pregnancy.
Thanks for any thing you can tell me. I am currently having my meds changed and trying to get my bp back under control. We are hoping that by January we can start trying to conceive.
Thanks
Smile

_________________
Maxwell house got it right, Good to the last drop, enjoy every day...

montice · Newbie Alert Joined: 20 Oct 2005 Posts: 4

HI
I know it has been a while since you posted, but I was wondering if I could talk with you about your pregnancy. I have had lupus for 8 years now, since 1997. Since then my lupus has been quite and I am now interested in starting a family. I was told that the first 3 months would be the hardest with my lupus and if it was going to flare up that is the most likely time, but not the only.
If I may ask, did you have trouble with you last baby? Was it from your lupus? I have other issues, I have a kidney transplant and high blood pressure, so I know that it will be HIGH risk pregnancy.
Thanks for any thing you can tell me. I am currently having my meds changed and trying to get my bp back under control. We are hoping that by January we can start trying to conceive.
Thanks
Smile

_________________
Maxwell house got it right, Good to the last drop, enjoy every day...