View Full Version : New to group!

05-19-2011, 11:46 PM
I am new to the group. I was diagnosed with SLE in late 2008, however this is my first "support group". I don't know anyone with lupus and I am currently in my worse flare that has been going on for a little over a month now. To add to the complications with lupus, I'm also a Type 1 Diabetitc on an insulin pump. I'm currently on Celebrex, Plaquenil, Prednisone (which makes my sugars high), Tramadol(supposingly for pain, I can't tell though), and Vicoden (which knocks me out so I forget about the pain until I wake back up). I have two kids, 7 and 5.... oh and a husband so I guess that makes 3! But because of the kids I don't take the Vicoden as its been perscribed because then I can't function, and me not functioning in my household is not an option....especially since I have that 3rd child who is clueless to what I am going through. So I deal with pain. I know that God won't put more on me than I can bare!!! A good day for me is when I have what I refer to as my "nagging pain", the pain that is always there that I've just grown used to. The problem I have with a "good day" is that I try get everything that I can't get done on my "bad day", which makes my bad days even worse! :-( I finally broke down and volunteered for a study medication for lupus...hopefully I'll see a change. I'll recieve my first dose in two weeks! I decided to search for a support group because I am reaching my burn out point. I can't talk to my husband because he's clueless. My parents, I don't think, really understand. They just apologize all the time about how they hate to know that I feel like I do. I think the kids understand better than anyone else. They bring a never ending supply of ice water, because they are now tall enough to reach the dispenser. They offer massages with their little fingers, and a lifetime supply of hugs and kisses. "But not too hard because we have to be gental with mommy!" I just need someone who understands. From everything that I've seen online (which you know can be scary) I consider myself to be somewhat lucky because I don't have problems with any of my organs, just the joint and muscle pains and a little hair lose. I've now been on short term disability for about a month or so, but I've got to get back to work because like everyone we have bills to pay. Well I guess that's enough of me complaining! Thanks for listening....plus my fingers are killing me now so I have to stop typing.


05-20-2011, 04:49 AM
welcome to our little family.
please take the time to read some of the threads. at the top of each section there are threads called "stickys". these are threads that have important information in them. it is usually a good place to start.

what is the new drug you are trialling?

05-20-2011, 05:20 AM
Welcome to WHL! I am so glad that you decided to join us. This is a great place with fabulous people. Please make yourself at home and look around because there are some great threads to read over. If you have specific questions/comments feel free to ask those as well. I look forward to getting to know you and, once again, welcome to the WHL family!

05-20-2011, 07:03 AM
Hello Qui,

Welcome to WHL and it's lovely to have you with us and don't ever think your complaining as we all know what your going through, so any time the water works start falling or you need to vent, don't hesitate just come on and release the lot out as there's always somone on line, it's better than holding it in.
There's so many threads for you to learn more off and just venture through when your able to type, i'm like you in that concern finger's aching plus typing with gloves on because of my fingers being cold off the Raynauds.
I do really feel sorry for you concerning your hubby not understanding and i felt the same until my hubby came to my 2nd appointment and heard more besides the dermo and i could'nt wish for anyone better but it's lovely how you explained how your kids are, that's the best love in the world 'BLESS THEM'

Like yourself and a good many of us, when we seem to have more energy that's when alot more things get done but it still knocks it out on you, so take thing steady.

((Hugs Terri)) xxx

05-20-2011, 09:18 AM
Hi Qui,
There are a couple new long acting narcotics in the US - Opana and Exalgo. You take them every 12 hours and they are supposed to work better because you have a more constant dose of drug. They are also supposed to make you less groggy. Most doctors haven't heard of them, so you might have to see a pain specialist or a rehab doctor. I remember how hard it was to hurt and feel bad and still have to care for young kids and work. I still take care of my daughter at 19 because of her health problems, but it is different when your kids are active and healthy and still want you to play with them. As for your 3rd child ;o), tgal's suggestion to take him to the doctor with you is a good one. If there is a Lupus Foundation or Arthritis Association in your area, they periodically have classes for patients and their families.

05-21-2011, 12:26 PM
Hi Qui;
I just wanted to tell you about several very good books for children who have parents with an Illness:

"When Mommy Gets Sick" by Rebecca Samuels
"When Mommy Is Sick" by Ferne Sherkin-Langer and Kay Life
" Young People and Chronic Illness" by Kelly Huegel, Elizabeth Verdick.

I hope that you find these books helpful. Also, let me take a moment to welcome you to our family here. I am so glad that you joined us :-)

Peace and Blessings

05-24-2011, 10:26 AM
Hi Qui,

How are you feeling in yourself since you joined us?? and i hope your ok, please keep we updated please. xxx