View Full Version : Newly diagnosed

11-07-2005, 03:50 PM
Hi. I'm Jodi, and I was recently diagnosed with SLE. Suddenly I find myself inundated with doctors appointments, pills, and questions. I am a secretary by day, and a college student by night. ...although I'm having a very difficult time concentrating. I get distracted, by nothing at all. Suddenly I find that I'm not even listening, or I can't retain what I've just read at school. Obviously this isn't reflecting well on my grades, and in the last 2 years I've gone from an "A" student to a "C" student. I don't know if I should address lupus with my teachers at the start of each new semester. So far I am inclined NOT to do so, as I've gotten very mixed reactions from people. At work I keep a list of tasks, and have to check it often, because I forget what I'm doing - or I find myself sitting at my desk doing nothing, when I have many things I should be doing. I don't know how to clear away this fogginess - but if anyone has suggestions, I'd appreciate them. I just turned 30 and I'm not ready yet to have these "senior moments."

I am taking Plaquenil, and Rheumatrex, a multi-vitamin and calcium, and an occasional injection of corizone when the pain in my shoulders gets to be too much. Every 4th week I am due for either bloodwork, or an appointment with my rheumatologist. I need to see the opthomologist every 6 months because of the Plaquenil, and in between these visits I need to squeeze in a GYN appointment and a dentist appointment. My boss is not all that tolerant of my new found need for an hour off here and there.

I live alone, and my mother is now treating me like I'm dying. She calls me at least twice a day to see how I feel. She asks me to move home. She stops by randomly to see me. She panics if she can't reach me on the telephone.

My boyfriend doesn't believe I have lupus. I don't know if he doesn't believe in lupus as a disease, doesn't believe I have it, or doesn't want to believe I have it. It aggitates him when he sees me take medication. He won't talk about it, because he says I don't have it.

For now at least, I am rather resigned to the fact that I have SLE. In April my doctor told me he thought I had Hodgkin's Lymphoma, and removed all the lymph nodes on the left side of my neck. I suppose after thinking I had cancer and was about to begin chemotherapy, I breathed a sigh of relief to learn I had lupus. ...although now that I know a bit more about it, I don't know which is worse.

I went to see my primary care physician last week I had a persistant sore throat, and figured I just needed an anti-biotic or something. There are two doctors in the office, and I think they dread my visits. In the last 2 years I have been there for pneumonia, a rash I get whenever I'm in the sun, the lymph node situation, extreme fatigue, etc. (It was only in the course of the surgery that it ever occured to them to check my anitnuclear antibodies, which lead to my referral to a rheumatologist.) When the nurse called my name last week, I went into the examination room. I sat there for an hour - and then looked out the door to see what number they were up to. (They have a magnet board, so they know which rooms have patients waiting). I was at the top of the list, so I went back into the room. A half hour later, I looked out the door again, and found that they kept bumping my number down. After 2 hours I went out to ask the nurse if someone was coming in to see me and she assured me I was on the list. After 3 hours, and no patients left but me, the doctor finally checked me. I told him my symptoms and he asked me what I wanted him to do, did I want a CAT Scan? I don't know what I want - I just have a sore throat. I just wanted a doctor to look at my throat. Turns out I had strep, but it's awful to be treated like such a burden or a hypochondriac.

I feel like no one understands, so I try to keep it to myself, but I'm getting so sad these days. I feel so alone. I don't feel like me anymore. I don't want to see my friends. They just tease me because I fall asleep during movies, or I want to go home early because I'm always tired. They think I'm bored, or I'm not fun anymore, but really I just want to rest. How did my life become this? I'm too tired to fight all these battles. Is anyone else having a difficult time coping with this? I thought I could handle it.

11-07-2005, 05:10 PM
Sorry you are so down. I was dx last week myself so we are in same boat almost. I havent started plaquenil yet...I have had Fibro for 15 years and don't know whether to be madder about the new dx or the fact that I've probably had Lupus 15 years since I had a "false" positive back in 1990, and they just diagnosed it. Ugh. It is horrible. All I can offer is "hang in there". Also, your bf, doesn't believe you have Lupus you said...do you have a rash and lesions too? Arent they visible to him?? If you don't he sounds like an insensitive jerk anyway, what;s the big loss? Your health is most important right now. Take the c's instead of the a's. Everyone has something, IMPO, I would not mention Lupus to professors unless you need a deadline extension, then I would pull it out.. Just my thoughts...again..hang in there...
Colleen S.

11-08-2005, 09:55 AM
YIKES. All I can say is you are a more patient person than I am. There is NO WAY I would have sat there for 3 HOURS like that. If I am in there without being seen for more than 20 mins I will pitch a fit. That is just ridiculous they treated you that way. Can you change primary drs? If you can, you certainly need to. You need a good dr on your side that can treat you like a human not as a leper. GEEZ that just makes me angry!!!!!
As for your bf, have you given him information to read? You really need someone who can understand and support you, and denial just ain't doing it. My dh was there for a while but no longer. We finally saw a counselor and he told my dh, find out about it because it ain't going anywhere. This is something you will have for the rest of your life. If he can't accept that then what do you think the future will be like? In my case it was awful. Dh said I didn't want to do housework or do this or go there. It wasn't a choice, I COULDN'T do those things at least not on his schedule. If I were in your shoes I would seriously be re-evaluating the relationship.
{{{HUG}}} I am so sorry you are going through this. I imagine finding out about the lupus was a relief over cancer. Lupus can go into remission or it can give you problems but chances are good, if you take precautions, that you can live a long happy fulfilling life despite it, or even because of it. It makes you slow down and pay attention to things that you wouldn't otherwise.
Does your mom know about Lupus? Maybe she's scared and if you provided her with information she'd be able to handle it better and back off a bit til you do need her help. Lupus.org is a good site for some information and it probably wouldn't hurt to visit a support group with her if there is one in your area.
I'm sorry if you think I was too blunt, but you have enough on your plate without the stress of a non-accepting and non-understanding boy friend and an ass for a dr.

biker chic
11-08-2005, 05:07 PM
Hello fellow suffers, I too am seeing drs almost more than my family. I have to go for bladder surgery this Thursday, which is a surprise since I wasn't supposed to in for another year. I went for a test last week and told my dr to put on the cancelation list. I didn't expect to be called so soon. anyways best to get it over and done with I guess. I don't know if a weak bladder has anything to with Lupus or not but I will be happy to have it corrected! I have never participated in a forum before. Please excuse my grammer and spelling. I think faster than I type lol

11-09-2005, 05:11 AM
Ruthie, good luck with your surgery!!! I have a bad bladder as well but I've always thought it was from giving birth LOL I also have interstitial cystitis which can affect the bladder. {{{HUG}}} I hope all goes well. BTW no problem on the grammar/spelling thing, I think these days a lot of us think faster than we type ;)

biker chic
11-09-2005, 12:03 PM
traceydawn, thanks for your understanding. You are probably right, child birth does alot to our bodies lol :wink:

biker chic
11-15-2005, 05:36 PM
I'm alittle sore, but every day is a new a day!

11-15-2005, 07:44 PM
Furious to hear what happened at your dr. appt., do you think you can change drs, I hope so. Maybe you can take a friend with you to the next appt., that helped with me, we kind of joked our way through it, and she was ready to jump down anyone's throat that didn't treat me right.
Hang in there don't know how you're coping with school and a job but the meds should help.
My mom acts the same way, she said she can't sleep at night because of worrying about me, which gives me guilt trips. She lives in Germany so you can imagine our phone bills. I tend to not always tell her when I feel bad, so she won't worry. Maybe you can get your mom to help you find a new doc or go with you, that me calm her down.

Good luck