Hi alienwife, Welcome to the group! sorry it took a while for someone to answer. Things get a little slow on weekends. I'm sorry you are having problems but I'm glad you found us. You are right. You're very lucky to have people to support you like you do. You'll find out there are some other folks on here that have children with autism. Not sure if there is a correlation or not. Than again I saw a comercial that 1 out of 150 children have autism. I would have never thought that. But hey if you can get your kids to help around the house that is a true blessing! Oh my name is Carol aka okie, or goofy,dopey,doc. I've been called it all and I will probably answer to anything. Let's see. my story is I'm 51, a widow for 10 years now. I have 2 children a son that's 28 and a step daughter that is 25. I have 4 granddaughters. Which is weird because for years no one in my family knew how to have anything but boys. I still havn't been DX'd but I have been dx'd and then undx'd. I have been maybe this and maybe that. Right now I am in need of a lung trqnsplant but they are doing lots of tests to find out what exactly is wrong with my lungs. If it's autoimmune then I probably won't qualify. but most days I except things the way they come. I do have my grumpy days though.
You said you aren't taking any meds? I would never suggest anyone take anything that isn't needed but a lot of us are on plaquenil here. It is a very safe drug and it kind of reminds me of a vitamin. You don't really notice it until you stop taking it. It takes several months to really work up to it's potential but boy has it helped me alot. I realized I don't swell up nearly as often and my joints aren't nearly as sore. I don't have a bunch of flares or fevers. I only bounce back and forth on 5 to 10 mg of steroids these days and I am sure it's the plaquenil that is helping.
Well anyway I just wanted to throw that out there. I'm all for exercise and healthy living but I also am not going to say no to something that has a good outcome for me. But we are all different.
anyway I look forward to getting to know you too. I'm sure others will be along to give you a shout and say welcome to the group too.
Post Edited (okie) : 2/21/2009 6:05:25 PM (GMT-7)
Nice to meet you, Carol. My name is Anne. Chose the name "alienwife" because my husband is still technically an alien since he has not completed his citizenship yet (doesn't know if he ever will - he is not conviced he should).
I'm sorry to hear about your problems. I am hoping that your doctors can find the answers and get you the help you need. I know how frustrating it can be when they don't know exactly what is wrong and the dilemmas of actually finding out. In your case, if it is autoimmune, you probably won't qualify for a transplant you need . . . in my case, I will never be able to get health insurance (because my employer does not offer it) and my income level is such where I don't qualify for any type of assistance. Not that I am rich, but I don't fall into poverty level, either. Frustrating situation.
I chose the natural route for now because I wanted to see if diet modification and stress management would work for me and it does, for the most part. I am usually tired and aching, but find that if I push beyond the first wall in the mornings, I can usually cope through the rest of the day. This probably contributes to my complete exhaustion collapses on the weekends, but at least that mode of operation helps me to feel like I am at least somewhat normal. My doctor has recommended Plaquenil, but I figured as long as I have the mental, physical and emotional stamina to push through without, I would wait until I was so miserable I had no other choice. I have a TENS unit for the peripheral neuropathy, which helps tremendously and I have a husband to rub aching joints :)
I guess I came here to meet others who were dealing with my type of issues. It's really alienating when you have to explain to people what's wrong . . . my in-laws are not native english speaking. We go to visit them and they simply don't understand that I cannot partake in the European tradition of the all-night party (my brother in-law-got married last year and the reception lasted until 6:00 a.m. - I had to leave at midnight because I was so tired I was ill). They don't understand that I don't want to go on a 20K hike along the coastline through all the little cities. I have great support with my husband, children, mom and boss (who is also one of my best friends now), but it hurts when the other side of your family doesn't understand.
Ah well . . . enough of my moaning. My problems are pretty insignificant compared to others.
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Thanks for the welcomes . . . I have spent some time here this weekend and have enjoyed getting to know those who I have talked to . . . It's nice to have people to talk to who understand.
I think one of my biggest issues is guilt . . . I feel really bad that hubby and kids have to do so much around the house because I can't. While I have managed to accept that I can't do all that I used to/want to, I haven't completely accepted the fact that someone else needs to do it for me if it is going to get done. Hubby does most of the laundry, alot of the cooking, most of the cleaning. I can usually manage to go to work, but that's about it. Frustrating . . . I feel like maybe I should cut back at work, but I love my job and it helps me to feel normal.
Guess I am having a down day. Tired, frustrated. Would love to vent my frustration and throw something, but that would require me to move something more than my fingers.