Today, the dr. says it is lupus - Lupus Message Board

Oregongirl · 02-16-2001, 11:12 PM

Well, today the dr. told me it is lupus. I have too many of the symptoms even though that one blood test didn't show I have it. My face is lightly colored red across the forehead and across the cheeks and nose. He said that every symptom I told him was lupus related. He gave me a shot in the hip. My SED count is 85. He says that is very high. My white blood count has gone down slightly.
Well, now that I know for sure, I would like to know if anyone can tell me any advice I should know or that would be helpful to me. I am 33 years old and a happily married mother of two. This is shocking, even though I kind of figured I had it.

Jeri · 02-17-2001, 12:19 PM

Hi Oregongirl-with-lupus. First, take a deeeeeep breath and realize that you already had this disease and have probably had it for some time. The good thing is: you now have a name for it and YOU AREN'T CRAZY!
Read all you can and begin to care for you. This is not selfishness- it is preservation of the resources you have.
I recommend "The Lupus Book" by Dniel Wallce MD to sort out what you are having thrown at you. Also check out (that is if you have NAY time in your already busy day) to check out the Lupus Foundation of America and legitimate medical sites. Read old posts on this board and try to join yahoo's egroup: rockingbabes. I haven't run into anyone yet who steered me wrong. Lupus patients have enough to deal with and don't seem to exagerate a bunch of stuff to impress anyone.
You're on an adventure- view it as that and you will gain something everyday. If you are a Believer, go to Him for your stengthening. I couldn't handle this without Him.
Keep in touch and ask specifics and we'll answer best we can.
Jeri

Oregongirl · 02-18-2001, 01:05 AM

Quote:

Originally posted by Jeri:
Hi Oregongirl-with-lupus. First, take a deeeeeep breath and realize that you already had this disease and have probably had it for some time. The good thing is: you now have a name for it and YOU AREN'T CRAZY!
Read all you can and begin to care for you. This is not selfishness- it is preservation of the resources you have.
I recommend "The Lupus Book" by Dniel Wallce MD to sort out what you are having thrown at you. Also check out (that is if you have NAY time in your already busy day) to check out the Lupus Foundation of America and legitimate medical sites. Read old posts on this board and try to join yahoo's egroup: rockingbabes. I haven't run into anyone yet who steered me wrong. Lupus patients have enough to deal with and don't seem to exagerate a bunch of stuff to impress anyone.
You're on an adventure- view it as that and you will gain something everyday. If you are a Believer, go to Him for your stengthening. I couldn't handle this without Him.
Keep in touch and ask specifics and we'll answer best we can.
Jeri

The dr. gave me that shot, and this morning when I woke up, I was in an absolute panic attack. My heart was beating faster than it ever has, and I was shaky and weak and very disoriented. I was so scared, it took me quite awhile to calm down.
I still feel sort of a rush feeling and it has been the whole day already. Has anyone experienced that with a reaction to a shot in the hip? I am going to ask my dr. what that was and recommend that he not give it to me again. I thought I was having a heart attack. My fever is so bad today and I feel dizzy. I hope there is a cure soon. This is so horrible going through. I feel so alone. This site has helped me so much. Just knowing I'm not alone is helpful.

Jeri · 02-18-2001, 05:41 AM

I am so! sorry that you had that arrack! No, I have never experienced it with prednisone, but I am on oral. That may be a facor. Some of the gals I am linked with tell me that they suffer from panic attacks. Now I have not read of the link between autoimmune like lupus and RA and PA's, but there may be one. That must have been terifying. And dontcha know- something like this always hits in the middle of the night!
This is all overwelming at first, but know that it's normal to feel this way. That may ease you a little, knowing that you'll regain some measure of confidence again.
You are young and have a lot to deal with in your life QITHOUT this mixed bag of diseases. Okay, times up- no more pity party.
You've got too much to learn to "stay there." You are allowed to explore "why me", but the sooner you get to "why not me" the better off you'll be. "why not me" as in who would you wish this on????
Honestly, I have gained so much in understanding, humility, compassion and wonderful encounters that I honestly thank Jesus for this adventure. Oh, to be sure, I do not like the pain & limitations, but these are being managed by my doctor. I keep telling my kids "Hey, we're building memories." That's gotten to be a big joke, cause just before I was laid out w/this finally diagnosed, the kids and I had gone to CA to bury my Mom. Every difficult step of the way I told them, "Hey, we're building memeories." It's a cue to laugh and lighten up- they DO laugh and DO lighten up, then tell me "Yah, right, Mom..."
I got real angry at first- not at God, but at the circumstances that would limit me with my family and my ability as a caregiver. What I have been bledded to see since then is that other family has stepped up to the plate to learn from me and to take on tht role. Even when I thought I would be useless, He is using me.
You are going to rise above this. Your body may not soar (it'll SORE okay :-) ) but your mind is still free if you'll let it be. I forgot one thing- sleep is ususally a problem with this, so don't be alarmed when you find yourself hobbling around at 3am- be sure to tell the doctor as rest is now a #1 priority. That is my hardest adjustment: resting.
Gentle hugs to you
Jeri

tina ballerina · 02-18-2001, 11:46 AM

hi oregongirl, I was 29 with two children, one was only 6 months old when i was diagnosed. It was the worst moment of my life, I had heard of Lupus, but was devastated because i knew the damage it could do. I have kidney, skin , joints and now experiencing Liver problems. Make sure you talk to people and tell them how you feel, don't bottle anything up, I did and ended up with depression and i could not leave my home with out having a panick attack. I found the Lupus association and i was back on track and with the help of boards like this one, I can look foward. If you ever need to express you fears or feeling
people like myself and jeri (who by the way has helped me out before) are always here to lend an ear ( or and eye, i should say).
all the best, and good luck, let me know how you get on.