View Full Version : Hi from WAY too sunny N. CA
06-04-2008, 04:46 PM
Hi, I guess I'll introduce myself.
Jenn, 31, SAHM with 4 wonderful kiddos ages 10,5,4, and 7 months.
No diagnosis yet. My regular family Dr. thinks it's Lupus and I have an appt with a Rheumatologist next week. I've had ongoing chronic fatigue bouts for years which included low-grade fevers that last for weeks-months despite regular use of NSAIDS, aches and pains, etc. About 5 weeks ago my hands, wrists, ankles, and feet started hurting, swelling, redness...I started taking Relafin for it and after 2 weeks it was so bad I went to the Dr- having kidney pain at that point too. 3 weeks later, I've got a pos ANA, SED rate of 56, other labs are within normal. I do have inflammation around my kidney per CT scan. I have a compressed sciatic nerve as well that's killer. My Dr. basically said it's all inflammation and she can't do anything except rx pain meds while we wait for Rheumy appt.
-I have malar rash- just pink flushing, not very noticeable with foundation and I've had it for a few years. I have a bad photosensitive rash on my arms- they get all splotchy and have red pin pricks all over them- comes out severely after only a few minutes in the sun. MY face gets worse after sun exposure and I'll break out with blister-type sores on the rashy area if I'm in the sun for more than a few minutes. I also often get a migraine after going out inthe sun and just feel run down and yucky if I'm out for more than a few minutes.
-a few more of my symptoms that point to Lupus:
-sores on scalp and thinning hair
-dry, irritated eyes lately and blurry vision
-ultra sensitive skin- to soaps, lotions, fabrics, metals
-history of multiple miscarriages(3 of my kids are adopted)
-history of pleurisy- I've had it 3-4 times in the past 5 years.
Oh yeah, I am also type 2 diabetic
So, I'm not happy to be here, but I'm happy to have found a board I can learn from, vent on, and get and give support on. :D
06-05-2008, 08:28 AM
I am new too, and have had similar experience with years of undX. There is NOTHING worse than knowing you are sick, being unable to do the most simple of things, and then be told there is nothing wrong with you. You DEF sound like you are headed for Dx though, with a pos ANA, really high sed rate, accompanied by all your other symptoms. Its too bad the doc couldnt give you steroids for the inflammation while you wait to see the rheumy, but, actually, it may be better if the rheumy sees you in an untreated flare. I know for me previously, a rheumy told me to come back when I was in a flare, as I looked perfectly normal (it was one of maybe one thousand days that I had felt good! lol). So maybe you are better off in an active flare. I cannot IMAGINE taking care of 4 young children with this disease. I did have two children when I first got sick (my son was a baby and my daughter was 8), but I was still somewhat functionable. Now they are 10 and 17. Thank GOD they are pretty self-sufficient kids. I will keep you in my prayers, and hope you are on some meds for some relief soon.
Take care, Lauri
06-05-2008, 11:43 AM
Thanks Lauri. 4 kids is really hard right now. Thank IPU that my husband works from home or I could not manage. My 10 y/o is a HUGE help IF we don't overload her and stress her out. She's high-functioning autistic, so that's easily done. She's a pretty self-sufficient kid, but doesn't do well thinking about what others might need or want. She's great at fixing lunches for the 5 and 4 y/o and keeping them entertained though. She's not social in the least with her own peer group and prefers younger kids anyway. Thankfully my kids are all pretty good kids. We're pretty strict parents and it seems to have worked out well for us. All the kids are enamored with the baby, so it's easy to find someone to entertain him most of the time. LOL! He's not getting very mobile all of a sudden though and YIKES! He's all over the place and it's a lot of work with 3 other kids, making sure it's safe for him to be crawling around all over the house.
Unfortunately, it looks like we will have to turn away placement of the baby's younger sibling when it is born. His birthmom is in jail and pregnant right now. I'm so torn up about this because we had always said that if a biological sibling were to be born, we'd take in that child for adoption as well. I know there's no way I can convince my husband to take on another child when we're having difficulty right now with 4 and he's so stressed out. We may have to find some way to figure out how to do it though because I would be torn apart and broken hearted to turn away a baby in need of a home. It would be different if we didn't know about the baby, but we do. We may just have to see how I'm doing at the time and/or employ someone(a mother's helper?) to help out. All 3 older kids will be in school by the time the baby's born anyway.
Ok, I"m rambling, but I have to say that the only reason my husband is so stressed out is because he's lazy and always has been. I'm serious. I love him to pieces, but it's a chore to get him to even take out the trash and mow the lawn every other weekend. Otherwise, he's never really done anything to help out at home at all. I've always taken care of everything. I've always been a high-energy person and I'm quite particular about how I want things done, so it was easier to do it myself than squabble with him. LOL! He seems overwhelmed with the simple task of loading the dishwasher while trying to get kids ready for bed(who mostly do it all by themselves anyway). These are things I handled all the time without a problem plus more. He's a gaming addict and hates that I can't play with him right now(hands hurt too bad) and that helping around the house a little bit is cutting into his game time. LOL!
Again, thanks for the welcome and well wishes. Right back at ya. I hope you feel well and have a great day!
06-05-2008, 01:09 PM
I am sorry to hear about the issues that you are having to deal with right now. It is always difficult to be in the "Diagnosis Limbo", without answers, without treatment, and with fear of the unknown. Hopefully, when you see the rheumatologist, you will, at the very least, get some treatment to help ease your symptoms.
My heart goes out to you and the issue of the sibling who will be born soon. There are many mothers in this family who can offer you support, advise and ideas that might help you. I only hope that things work out in a way that is best for you, your health and your family.
It sounds as if it might be time to start educating your husband about Lupus, its symptoms, its medications (and their side-effects) and its treatments. If he is upset because you cannot game with him, then it certainly sounds like he doesn't really understand Lupus. Even though you do not have a formal diagnosis, it is still a good idea to learn about Lupus (as many other auto-immune disorders have similar symptoms as Lupus), both for you and your husband.
There are several good books that I recommend to everyone. They are:
* THE LUPUS BOOK, A GUIDE FOR PATIENTS AND THEIR FAMILIES; By Daniel J. Wallace
* LIVING WITH LUPUS; By Mary M.D. Horowitz
* LUPUS, EVERYTHING YOU NEED TO KNOW; By Robert G. Lahita, Robert H. Phillips
Hopefully, these books will help you and your husband to understand this disease and will give him a better understanding of what you are going through.
Please let us know how your rheumy app't goes!
Peace and Blessings
06-05-2008, 02:36 PM
My DH does understand Lupus very well. He was actually misdiagnosed with antiphospholipid syndrome a few years back and they checked him for Lupus due to and antiphospholipid antibody(he had a DVT 13 years ago and has post-thrombitic syndrome). He knows as much as anyone can know about the disease from online research on an intellectual level I guess. The problems lie in that he is mildly Autistic as well and really lacks that empathy I need. He is sad to see me in pain, but he can't relate, KWIM. Unless he's experienced something similar, he just can't seem to empathize with it. HE rarely gets sick and has as great immune system. He has basically said he's tired of me being sick, he's tired of hearing me complain, and he's sick of worrying about what else is to come and how we're going to handle it, but his empathy for my aches and pains is wearing off because it's been so long. He's a huge help in that he drives me around to appts(I do not handle pain meds well- crazy loopy), runs errands and goes shopping for me, but the housework which requires more stamina and hurts my hands so badly is where he needs to pick up some slack. I've got 3 pretty good kids who don't mind helping if bribery is involved though. LOL!
I want to also tell you that I am also on the autistic spectrum(ya, our daughter was doomed. LOL), but it affects girls/women a lot differently than boys/men. We still have the empathy, the ability to completely put others ahead of ourselves, and more understanding of emotion than men do. My daughter and I actually have been taking part in a research study at the UC Davis MIIND Institute where they are comparing the effects and symptoms of high-functioning Autism and Aspergers between boys and girls and the differences in relation to hormones, etc. It's been interesting. They actually have come to believe that there are just as many autistic girls as boys out there, but the girls don't get diagnosed because we don't have the behavioral and ADHD problems boys do as often.