View Full Version : Hello from New Hampshire
07-26-2012, 03:03 PM
Hi there! Found this board by chance today and thought it would be great to get some online support. My 17 year old daughter was diagnosed with Lupus Nephritis at the end of March this year. We're still getting used to things and she's still in the middle of her initial phase of treatments. Glad to have found this community!!!
First let me say how sorry I am that your family is going through this. It is hard enough having this disease as an adult but watching your child deal with it must be a nightmare.
Now let me welcome you to WHL! We are so glad to have you as a part of our family. Pleaseake yourself at home. If you have any questions or topics you want to discuss feel free to start a thread with it
I look forward to getting to know you!
07-26-2012, 04:13 PM
Hello Doreen from New Hampshire! Pretty part of the country it is there (is that Yoda talk?). Welcome to the forum, and like Mari, sorry for your circumstances. We'll be thinking and praying for you all here...
Welcome to WHL! I'm just up the road from you in Maine.
Please make yourself at home here,
07-26-2012, 09:06 PM
Welcome to WHL. You will find lots of information and support here. We have quite a few young members, so your daughter might also be interested in joining our cyber family. It will probably help her to realize that she's not the only young person dealing with this.
07-27-2012, 06:15 AM
please tell us a little more about your daughter.
08-02-2012, 05:57 AM
Hmmm, where to start? Brittany is my oldest of 3, and my only girl. As far as teenagers go, I can honestly say she's been really easy for me! She's an honor roll student and for the most part, really doesn't give us any trouble at all, other than the occasional teenage drama stuff! She'll be headed in to her senior year of high school in the fall (we hope she'll be able to go back at this point!!).
This has been a huge blow to her, both physically and emotionally. As a Mom, we never want to see our kids in pain and struggling. I haven't fully come to terms with all of it just yet (and she really hasn't either). She had some pretty tough complications in the beginning, including a really bad allergic reaction to Bactrim which caused things to flare up even more than they were. 3 hospitalizations and 3 rounds of the IV steroid pulse later and we seem to have things settled down somewhat (at least as close to settled down as they can be for now). She's had 4 of her 6 chemo treatments, so we're almost done with that, thank goodness!!
Our family is not a stranger to lupus. My younger sister also has lupus nephritis, diagnosed 27 years ago. My grandmother died from the same type. Although, what I thought I knew about it is nothing compared to what I'm learning now. But, I am very thankful for picking up on the cues that something was wrong, and I may not have reacted so quickly had it not been for remembering how things started with my sister.
I have told her about this site, so hopefully she'll come on over herself and get to know some of the other young adults going through similar situations. As much as I try to understand what she's feeling and going through, I know that I will never have a full comprehension of it, so talking to people who do will be really helpful for her, I think.
Thanks for the warm welcome!!
Hmmm, where to start? ...
(snipped for brevity)
...Thanks for the warm welcome!!
It sounds like you are both dealing with the situation very well all things considered. I have Lupus in my family as well-my mother has it. We've learned to lean on each other, and to look out for each other.
It will take time for both you and Brittany to come to terms with all of this, but trust me when I say that it will happen, and as time goes on, the monster that is Lupus will shrink and lose quite a few of it's teeth. What seems like a wall now, will become just bumps in the road.
Mom's lived with SLE for over 20 years, and it's been 8 years so far for me. As you know, people can live a full and productive life despite this disease. I have no doubt that Brittany will weather the storm.
08-23-2012, 11:00 AM
Hi Doreen! I'm new as well, but I just wanted to say I'm from new Hampshire too! I'm 32 and have been struggling to get the right dx and treatment since I was a teenager. So sorry for all tha your going through, my thoughts and prayers are with your family! I'm in the seacoast, where are you?
08-23-2012, 05:32 PM
welcome to whl family i have lupus and my 24 year old daughter was diagnosed 2 years ago it is harder to watch your children to go through it. we are here to support you hugs kim
08-24-2012, 08:43 AM
Welcome to our family and I do hope that Brittany decides to join us as well. I know that this must be difficult for you and your daughter as it does mean an complete lifestyle change. However, as Rob mentioned, it is quite possible to live a long and productive life with Lupus. I've lived with it for nearly 30yrs and I am still very active, relatively healthy, and can do almost any and everything that I want to do (with modifications, of course).
We are all here to help you and your daughter in any way that we can and we are so glad that you found us and decided to join our family.
Peace and Blessings