Hi all. This is my first post and so I guess I should introduce myself and give a little back story. My names Rachel and I had been sick since September 5th. My family doctor ran some labs and it came back with a strong indicator of lupus. She referred me to rheumatologist. I met with him last Monday and he was hopeful that it might not be lupus. But he ran some specific test and took lots of blood. We
Made an appointment for October 30th and he said he’d call if anything happened before then. So today I get the call. The tests were abnormal. The doctor isn’t in and now I have to wait till Monday to talk with him. I’m worried. What if it’s something worse then lupus? What if it’s cancer? What if it is lupus and it’s really bad? So many questions. I’m actually sitting at my regular doctor’s office after getting IV steroids and antibiotics for an ear infection that I’ve been fighting since last Friday. I’m seriously about to break down. I hate living like this, scared and just waiting for bad news. 
Welcome to the group. You have come to the right place for support. I don't know at this point what to say, other then I will be praying for you. I know from experience waiting and not knowing can be very scary. I have not received a definite diagnosis of Lupus yet, but all my blood work and symptoms are pointing that way. Living with a chronic illness is difficult and you need a support system to help you along. This community of people are caring and supportive to one another. That makes a big difference when you are dealing with all the things Lupus can do.
I will be praying you find some answers and get relief soon. Please keep us posted.
Creekbank
I soooo understand how your feeling. Ive only been diagnosed a few months myself. It is scary & confusing. It took me 3 months to get into a Rheumy after my PCP told me he suspected Lupus.
Know that you are not alone in this and you can learn so much from this site. You'll also form a great support system.
In the mean time, try to relax & not worry so much about your test results. Worrying will not change your results and the stress of worrying will only cause you to feel worse. I know that is easier said than done. We've all been through it & it sucks. ((HUGS))
Flutter is right! Worrying will make you worse.
Thanks for the comments and support. I am trying to just calm down, but it's hard. I'm just so new to this whole thing and I hate not knowing what's happening. I take comfort in the fact that if it was something horrible like cancer or something that was more urgent they would have got the doctor to come in today and give me the results, at least that's what I'm telling myself to try and calm down.
reidstringbean,
I know that this is probably the most frightened you have ever been and everyone here has been there as well. Often not knowing is the scariest part. The fact that they are not bringing you right in, etc. makes it incredibly likely that is something like an auto-immune disease like lupus.
Lupus is enough in itself. And, truthfully more is known about the other "scary" diseases than this, so you are going to need to be proactive. Do research before your meeting so you know what your options may be.
We are here to help you and try to answer questions that you may have. It's very helpful to read the tab above "overview of lupus".
We have many wonderful groups that I would encourage you to look into.
We truly are a family and while many members of our own families don't understand exactly what this does to our bodies, not to mention our sense of selves, members here do.
Hugs & Hope,
DeAnne
My daughter who is 23 also has lupus like her mom. She was diagnosed her senior year of high school. She has gone gluten free and eats all natural whole foods and exercises several times a week and she says she is in remission even though drs don’t use that term. She says she feels great. I have done well for years until having a ten day “vacation” in the hospital this past summer. All that said is that every lupus patient is different. I know how hard it was for my daughter to get her diagnosis at 17. It is hard being so young and to have to face something like lupus. Surround yourself with people who will support you (like these boards). You will be in my prayers! Try to stays busy this weekend and think positive thoughts!
It is very hard to wait on results and see the doctor. Please try and take your mind of things till you no for sure what is going on. I will be thinking of you.
Hi Rachel and welcome! Start documenting everything that you are feeling physically and emotionally and mentally. Jot small notes while you are researching lupus if it seems that is what you are going through yourself. Be prepared if the doctor does give you the lupus verdict with questions for him. This will make you proactive with being on top of lupus. Remember we are all not alike with this disease. You could have it mildly for a long time. I am sorry you are facing this but we all did it and some here were very young when they were diagnosed. Prayers and healing thoughts.
Good moning
Waiting is the worst. Last Wed we found out my hubands cancer s back. CT scan and bone scan is scheduled for Wed. and it w ill be a long 5 days, so I know what your going thru.I guess you need to concentrate on something good. We're here for you. Keep us posted.
Cindy
Hi Rachel,
Breathe..... you can only deal with today. Tomorrow hasn't happened yet, focus on today. If it were really serious they would have sent you to the ER.
I remember when I got the call that my ana was abnormal and they were referring me to a rheumie, I google it and it said it could be either RA or Lupus. I read up on both, and I decided then and there that I wasn't going to have Lupus. On my first visit, my rheumie diagnosed me as RA, and I told myself see, I was right. Then he ordered more blood work, and when I returned in a month he changed my diagnosis to Lupus. I went home, read the pamphlet he gave me and cried. Then I went to the Library and got a book on Lupus, and read it cover to cover that weekend, and I googled support groups, and found this wonderful site.
Last year at this time, I felt so horrible, I thought I was done working, Now I'm feeling better, and trying to find work again. Don't worry about what hasn't happened yet... If you pray, why worry. If you worry, why pray.
Cindy, I just read about your husband. I am so sorry. Prayers for him, you, and all your family!
Hi
Thanks for caring.
I told my husband he can't get sick, he wil have to help me one of these daysLOL. He'll be fine. No matter what. He 's 73 and still works full time, I wish I had his energy
Cindy
I'm guessing about this, but if your pcp ran initial tests, I would think any of the indicators for cancer or other type diseases that have definite markers should have been seen then. The rheumy could be anything autoimmune, and arthritis related. Try not to worry, sweetie. And remember, even lupus is not a death sentence. : )
More than likely if the doctor didn't call you himself, it isn't the C word. Our Dcotors were the only ones who told patients that and it was never over the phone ever. The labs the rheumatologists do are specific to the diseases they treat unless they have reason to think other wise and usually they tell you. Then normally they will do the test along with referring you to another doc for that specific disease. My best guess is lupus or some type of autoimmune disease. I know you are going to worry there is nothing that will change that, we all do but try to occupy yourself with something you enjoy that isn't too taxing physically. More han anything keep your chin up, we are much stronger than we think we are and you too will get through this. Best of luck on Monday, lupus is not curable but it is treatable and we can have pretty normal lives to a point unless we have a flare then it is difficult. But you have all of us to talk to and commisurate with. Heart and thoughts are with you dear heart. We're all in this with you OK
Thank you, lone wolf, for writing that little meditation/mantra. I could feel myself breathing and slowing down as I read it slower and slower. I used to say this type of thing quite often and then I forget and don't for a longtime. Thanks for the reminder that I am taking it as for me.
Hi!, take a deep breath -no news is good news! At least that is what my mom mother use to say all the time! Waiting and makeing yourself get all up tight, don’t think about nothing until you are with the doctor for the results! Relaxe ! Control the Now Moment…Beverly L.
Hi Rachel,
I'm sorry to hear you are going through all of this & hope you get an answer soon. I went through the same situation for several yrs before I was diagnosed with Lupus. I was feeling so sick for so long it was a relief to get a diagnosis. I'll be praying for you during this difficult time. If it is Lupus there are many treatments today to manage this chronic dx. I pray that God will give you strength to deal with all these issues. Try to think positive, everything will work out for your favor.
Hi Rachel,
I'm sorry to hear you are going through all of this & hope you get an answer soon. I went through the same situation for several yrs before I was diagnosed with Lupus. I was feeling so sick for so long it was a relief to get a diagnosis. I'll be praying for you during this difficult time. If it is Lupus there are many treatments today to manage this chronic dx. I pray that God will give you strength to deal with all these issues. Try to think positive, everything will work out for your favor.
You have received excellent advice from others. See how they respond with just one discussion post? There is so much positive energy sent your way by others who care and understand....and can tell you their stories. You have strength within you. Worry and fear are understandable, but they zap you of your much needed energy. Take care and I'm so glad you are on this sight! Lupancatwoman