I know you must be having a hard time being sick all the time, and probably wondering why no one thinks you are sick and wondering how you're going to go on, keep working, and keep it all together. The two hardest things for me, and I believe for many of the people here, have been (a) not having a diagnosis for many years, and (b) knowing that a lot of people in my life didn't really think I was sick. That second point may still be a factor in my life, but I disregard people who don't treat me with the respect we all deserve.
But actually you do have a diagnosis. Sjogren's syndrome is a diagnosis of a diseases that not only causes dryness, eye infections, and other problems, but it can also cause joint pain and fatigue. UCTD is also a diagnosis .... for people who have autoimmune disease but when the doctor is either not sure is it's too early to diagnose which autoimmune disease or diseases the patient has. As you know, lupus and other AI's can be extremely difficult to diagnose because there is not a simple blood test for it. When I was finally diagnosed, I thought I had six or seven of the criteria for a lupus diagnosis but my doctor only counted four. I never knew why.
A good reference is The Lupus Book: A Guide for Patients and their Families, by Daniel Jeffrey Wallace. You can purchase it at the HealingWell Bookstore or you might be able to check it out of the library. You can also read exerpts on the web. I looked it up and on page 173 it discusses UCTD and mentions that most patients with UCTD are treated with NSAID's, Plaquenil, low doses of prednisone, and methotrexated.
Have you discussed any of these with your rheumy? If you can make an appointment to see him soon, I would do that, and I'd go armed with a long list of questions and concerns that you have. You've probably heard us recommend that people keep a comprehensive list of any and all symptoms you have and have ever had. The more ammunition your rheumy has, they easier it will be to put together the pieces of your AI disease. I'd also ask him if your night sweats and swollen lymph glands are symptoms that should be seen by another doctor. You don't want to let something else slip through the cracks because you're most concerned about
your AI disease. I don't know whether your doctor isn't giving you prednisone because you are overweight or because he doesn't think it will help you at this point. I would ask him directly rather than make an assumption.
And ask us questions, which I know you do, but don't hesitate to ask as many and as often as you think of them. Believe me, we all do. We're not doctors but we have been where you are, and most of us for a longer period of time so we've had more time to educate ourselves.
Harder than educating myself was educating my husband, who is my most important support person. I really really needed for him to understand what I was going through and it didn't happen overnight, even though he's a pretty compassionate husband. But he's still a man and wants to fix things and has trouble understanding that some things can't be healed. When I was going through my worst flare of fatigue and had been having trouble getting out of bed because my body just didn't want him to move, I found a long thread in this forum - about
a year ago that dealt with extreme fatigue, printed it off, and gave it to him to read. It
opened his eyes. We have come up with code words and now, when I tell him I feel like someone stuck the needle back in my gut and sucked out all the air, he knows not to ask me to do anything because I just cant. Give your hubby time ... he'll finally come around if you give him the right tools. Have you read the spoon theory? It's for patients who have lupus, but many people who have UCTD experience many of the same symptoms. The site is:www.butyoudontlooksick.com/2004/11/the_spoon_theory.php
I've learned to to go into much detail when people ask me what's wrong - not unless they really want to know. I would just tell them, if I were you that you have an autoimmune disease and that your doctors are still determining how to treat it.
I have a case of shingles right now and it is causing me to flare, so in addition to the pain I have from lupus and RA, I also have pain from shingles. Today my hubby and I were discussing a friend who has had shingles and my hubby said, but he looks sick....you don't look sick. Well, he looks sick my dear husband because he's had a heart transplant. I was careful not to snap at him, but I thought it was insensitive for him to point that out. I was probably being supersensitive because people just don't think we're really sick, or they think we're depressed, or whatever they want to think. But I held my tongue.
But Emily, I do know how you feel, and it's frustrating, isolating, upseting, and all that on top of the fact that you just feel downright lousy nearly all the time, and yet you're still expected to act and perform just as you did when you felt well. Maybe if you took your hubby to your next appointment with your rheumy so that he could ask any questions that he has.
Hang in there. This is just a process, and a long one, and I'm so glad that you have found this forum. I hope you'll become more and more comfortable here and share all of your frustrations with us. Young people do get sick, but most young people don't have many friends who have chronic illnesses. My hubby and I used to sit around with our friends and argue about
politics, world events, our careers, and now we sit around talking about
our health, our meds, and how our bodies are falling apart. Well, that's not all we talk about
, but it's certainly a topic of conversation that wasn't there ten years ago. Then we were talking about
our parents' health. So for you this must be so much harder. Your life is still in front of you and you're going through things that people may not want to hear about
Arm yourself with information and all you can do is your best. We're here for you Emily. Your posts have really struck a nerve with me probably because I have kids your age. And don't forget, because I never do, these things can go into remission. Please take care and let me know how you're getting along.
<Edited just to make the link work.>
Post Edited By Moderator (Lynnwood) : 7/5/2007 8:55:51 PM (GMT-6)