New at this. Any insight?

I have been diagnosed with Lupus for less than a moth. I am wondering some things I am incountering to see if it is "normal" or what. I have such a back pain that I cannot move, I haven't been able to get a good nights sleep in I cant remember. I am very forgetful and loose train of thought. I cry at the drop of a hat and yell for no reason. I feel like I am ailenating my family as they are afraid to see which mood I am in and it make me very sad. I am now coming to the grasp the I cant do everything. I am tired of being sick. (vomiting and diarreha) I am only on plaquinel aand 50,000 unit of vitamin D and 2 600 mg of calcium pills a day. I got a tattoo of a purple butterfly and now regretting it. It has tore down several layers of skin and hurts. My hair is falling out and my butterfly rash on my face seems to be getting darker now. Anyone have anything like this going on? I go Friday to see my rheumy I believe we are ultrsounding my liver as my counts are high. What the heck is going on here with me?

Hi Misty, You are overwhelmed, which is so normal, esp. when this is all so new. You are in the grieving process of ur old self…We all go thru it, I sure know I did…You are being hit with too much at once! The mood changes are from meds along with the stress of being sick too…It is all a shock to ur system. That is y you feel so moody & angry & sad…It is totally normal, talk to ur doctor u may need something to help w/ anxiety or depressiion just till u get acclamated to what life is now…Anyone in this position would need help. Don’t be ashamed or afraid to ask your doctor. That is what they r there for! You can’t do everything sweetie, none of us can, it sucks, it really does! The tattoo well, you might have an infection, it may have not been a good time to get it, although I am ure it looks awesome…Between ur body chages from Lupus & the meds, even ur skin is different, thus causing the reaction from the tattoo…Ask ur doc bout that also, u may need an antibiotic ointment/cream or even an oral one…U can’tlet it get badly infected…Your family will understand with time too, along w/ u understanding.It is a change for all of u! In time my friend, give it time…I understand the hair part too, it also SUCKS, I have more in my brush and shower drain than in my ponytail…It also comes w/ flares & meds too, but usually Methotrexate, not usually plaquenil, so it must b frm the flare, also w/the that vomiting/diarreha, maybe the doc can give u something to help ease that too …Symptoms come and go my friend, days will be OK, some good, some WOW, not bad at all, and SOME where u don’t wanna get outta bed! It is all normal, even though u can’t imagine it being considered “NORMAL”…it is…and u are not alone, we are in it all together! The butterfly rash will begin to disipate in darkness when the Plaquenil kicks in, that usually helps, how long have u been on it? Do u have any ointments or creams given to u for the rash? The liver tests are also normal with Lupus, it usually is just another way the inflammation affects ur poor body…So also don’t panic…please. Just have the doctor chk it out on the U/S and he/she will know what’s going on. But I have heard ofthe function tests being elevated often w/ Lupus…even RA… Your back pain is inflammation too, I have it bad, and yes, it affects my sleep too, is it upper or lower back, or both? And the loss of memory and forgetfulness is also normal, cause look at all the things I just said to you, anyone who had that on their “plate” in life would have the same memory issue…YOU are going to be OK, even though you feel you are falling apart at the seams,TRUST ME!! I know! Relax & Take a deep breath, smile & laugh a little…Life is way to short my friend, so cherish everyday regardless of the pain & fatigue that u are able to be with ur family…It is a hell of alot better than the alternative! That is what I say to myself quite often! {{HUGS}} to U & Please Hang in There! I am here whenever u wanna “vent”…I totally understand! And I am here to give u insight anytime! Suzie :0)

Dear Misty,

I concur with Suzie's post. I'm fairly new at this myself (nearly 5 months). It's a rollercoaster ride, but it can be tamed with help. Your days will vary as to how you feel. Not many will understand it. My family doesn't. But we here do. Talk openly with your docs about what you are experiencing. Personally, I keep a few journals. Why a few? One is just random life stuff. One is for symptoms as they come because my memory is spotty at times too. It make take a bit of time, but learn to pace yourself and slow down. I'm not good at this as I was used to going "wide open". I can't do that now. You have a lot to contend with and your feelings are validated. But in working with your doctors, you can work toward improvement. Right now, I'd advise that Misty takes care of Misty. Do what you can or feel has to be done, take your time with it and rest as often as you can. Find ways to relax..even if for a few seconds when you feel that overwhelming feeling coming on. It does help. If you need to vent, we are here too. We "get" the pain, aggravation and symptoms. Vent away, sister. We are here for you. Please let us know how you do at the doc's?

Take Care,


Misty - are you living my life? I'm going through just about the exact same things. Thank you for putting a voice to the feelings!

Well I think everyone has covered most of the stuff! I also have alot of back pain so I can relate.

If I snap at my family I always apologize immediately and explain why I’m cranky… I have two daughters and wouldn’t want them to wonder what they did to tick me off. I find they are great with that …generally their response is to ask if there is anything they can do to help. Sometimes I’ll tell them I could use some company and that will lead to some great chats about what’s going on in their lives. (they are 21 & 17 so don’t spend much time at home with university, jobs & boyfriends).
I know my oldest mentioned a flare I had when she was younger being really stressful for her because I had kind of kept to myself what was going on because I didn’t want to worry my kids. I didn’t realize that kids will make things into a bigger issue than it is so I learned that telling them what was going on was less stressful for them.