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Posted 3/1/2008 5:12 AM (GMT 0)
Hi everyone.  I have been browsing through your forum and was hoping I could get some advice from you all.  I am 27 years old and I have an 18 month old daughter.  At my last dr appt, I was told I tested positive for Lupus.  I have no clue what sort of test they did and I do understand that a blood test is not going to tell you that you have lupus. 

I have had chronic unexplained hives since I was 13.  They come and go, sometimes years at a time.  I take atarax and benedryl for them.  They tend to come with stress and anxiety.  This last time they started, my hands and feet were so swollen I couldn't walk or use my fingers.  When the swelling would go down in response to meds, my joints would just ache.  I have also had painful swelling in my throat and chest.  This is what sent me to the dr, to get a steroid shot and update my atarax.  He suggested claritin, which works great (doesn't make me sleepy) and that I be tested for RA.  When I went back, it was a different dr and she was no help to me at all.  So, now I have an appt w/a rheumy, but it is not until mid April.  I am very concerned that when I go to see him, my diagnosis will fall through the cracks.  Where I live, dr's appt's are hard to come by and offices are jammed with patients.

Along with this news, I am anemic, have been for most my life.  Is this related to Lupus?  I have been so tired all day long, that sometimes it is hard to care for my daughter.  I am sad a lot and so fatigued that I feel depressed.  The joint pain is most noticable when I have been busy doing things all day, or after things like rocking my daughter.  My memory seems to be different too, I forget so many things, like what day of the week it is.  No matter how hard I think, it just doesn't come to me.  I had graves diease, and 4 years ago I had a total thyroidectomy.  I take synthroid to regulate it.  I have vitiligo, which is an autoimmune skin disease.  This came at the same time my hives started.  I also had meningitis when I was 16, which put me in a coma, luckily I survived.

I guess I am just wondering if anyone shares my same issues.  I am so tired of being tired, I just want to have the energy to make it thru the day.  Any advice on what to talk to my dr about?  I am also wondering if I should be worried about trying for baby #2.  DH and I are just waiting for my appt in April, then we would like to try again.  Thanks if you made it this far, and for your help and advice.

Posted 3/1/2008 5:44 AM (GMT 0)

Hi Jenna, not sre your name so I'll just call ya Jenna for the moment. Anyway welcome to the forum. Wow you have been through alot for such a short time. I started getting rashes when I was 13. They put me on valium. I've pretty much been on somthing for anxiety all my life.

From all the things you mentioned somthing is diffinently going on with you. If you have been reading posts here I'm sure you have noticed that many of us have had to go thru several doctors. I'm on my third rheumy now or I will be my appt isn't until april or may I can't even remember now. There aren't alot of doctors close by me either but if I couldn't get results from one I had no choice but to keep serching. I do hope you get one right off the bat that can help you though.

As for what to ask your rheumy first you need to make a list. Keep a tablet and pen close by for when ever you think of anything. I don't care if it's a hang nail. What might seem like nothing to you may be very important to your diagnosis. You might try going from the top of your head to your toes. You would be amazed how many little things we have on our body that we just live with because it's been with us forever. We never give it a second thought. Talk to yourfamily find out if they can remember anything that you might not remember. See if anyone cousins or grandparents whatever may have had any type of autoimmune disease. Keep a camera handy. If you get sores in your mouth that you  can get pictures of or rashes or swelling or anything like that get a picture because it probably won't be there when you see your doctor. Take your tempture about 3 times a day and write it down. Somtimes we have a temp that goes up and down throughout the day.

I'm sure others will be along to give you some good advice and to welcome you to the group. Also we do have ladies in the group that have had lupus and still had more children without problems. Others have been on bed rest alot. Some have had miscarriages. All of those things can happen with perfectly heathy parents too though. I think that would be somthing to discuss further down the road with your hubby and doctor.

anyway my name is carol I live in oklahoma I'm 50 years old and I have been sick for years but still have not been completely confirmed with an auto immune disease. So like so like you and many others it's a long mostly frustrating process.

Hope this helps some

welcome aboard

carol

Posted 3/1/2008 2:05 PM (GMT 0)

Hello......just took a minute to catch up and read your post and am terribly sorry you are going thru so much -----and with a child to look after.It is always a rocky road in this disease and much adjusting is needed  ne thing I would mention that got picked up on me---avery much older lady--needed to put that in ---was a very low B 12 and am now on lots of vitamins and supplements to keep it up.We don't always realize that any disease can deplete our bodies of needed nutrients.Family Drs are not always the most informed so do your research-----

    Now enduring an abcessed jaw after a filing and I had to make 4 calls --2 of them Drs in order to  find out what to do if we go for an extraction......Platelets must be above 50,000 but the stress was left on me to get the answers and I already felt totally miserable but life goes on....So do take things easy and only do the essentials until you feel better.....I recently started another Happiness Journal.......I do keep track of the Bad..but like to look back  an all the positive things that others do fo me..,Like a phone call from Florida yesterday....to Canada..loved it

    Take care

      smurf

Posted 3/1/2008 5:35 PM (GMT 0)
Jenna,
Welcome! I think fatigue is arguably the number one complaint of many of us. It is so frustrating and depressing. I don't have kids but I have neices and nephews and I know an 18 month old is a bundle of energy! Do not allow yourself to fall through the cracks. You will have to be aggressive about your health care needs. I think we've all learned that the hard way! You've found a great place to come where people know what you're going through. I had a left subtotal thyroidectomy in my 20's. Many of us suffer from memory impairment, it's kind of a running joke on the board most of us call it brain "fog". Anyway, just wanted to welcome you. I love your name. MY neice is due on March17 and will be named Jenna Grace! I love it. God BLess you, Judy
Posted 3/1/2008 11:27 PM (GMT 0)
Thanks for all your replies. It is great to be able to read everyone's stories and know that someone else understands how you are feeling. It is hard sometimes I think for those around us to really get what it is like. I have my fingers crossed that the doctor I am going to see is really great.
Posted 3/2/2008 2:13 AM (GMT 0)
((((((((Chrisnjenna))))))))) You got some good advice above. I just wanted to welcome you to the forum. Some advice I've given many times is . . . only do the household chores that stack up. . . like dishes and laundry. If you skip vacuuming and dusting, it wont be any harder when you can get to it. If you skip washing the floor it wont hurt anything and it won't be any harder when you get to it. So concentrate on baby's needs and the chores that would stack up if left undone. . . save your energy to heal your body and make sure you are carving out enough time for good sleep. We heal in our deep sleep. Make sure to read the posts in "Lupus Resources". (Link at the end of my signature) There are some great tips there from all the members to help you have a better doctor appointment and to manage your disease. Keep us posted! Blessings!
Posted 3/2/2008 9:23 PM (GMT 0)
Hi chrisnjenna and welcome. I see you have already gotten some warm welcomes and wonderful advice. I really hope your rheumy appointment goes well and that you will get some treatment that helps to relieve some of your symptoms. It can be so hard to get a diagnosis and I hope that the results of your bloodwork will make it easier for the rheumy. I'm a mom too and I know how terribly hard it can be. My daughter was just 2 and my son was 6 when I first got sick - now they are 6 and 10 and we have all adjusted a lot better than we did when I was first sick. At first I was so fatigued that I was going to bed at 6pm and had no energy to do much of anything with my kids and I felt tremendous guilt. Over time I figured out how to pace myself and ways to do quiet things with my kids when I was really fatigued. Now I'm on meds that help with my symptoms and I've quit my job so I can do a lot more with my kids. Other people have told me that my kids will become very compassionate people through this experience and I can already tell that they are. They are amazing kids who genuinely seem to like to help out, so now I don't have as much guilt, but I do know how hard it is. Hang in there. You have found a great group of people here and we are very supportive of each other.
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