View Full Version : hey everybody
03-13-2008, 05:36 AM
hey. my name is sarah. i was diagnosed with lupus in august of last year. (2007) things have been pretty crazy ever since. but i'm getting through it ok. i've already gone through a bunch of treatments and chemotherapy. and i would love to talk to more people like me. so far, i haven't met anyone with lupus but i really would like to so i don't feel like some kind of outcast/wierdo. haha i use AIM alot so if anyone wants to chat, jus let me know and i'll give you my screen name....
03-14-2008, 08:52 AM
I'm glad that you joined us. You will find that there are many people here who are willing to share their experiences with you and who are more than willing to answer any of your questions and provide you with information.
I know how difficult it can be, when you fairly newly diagnosed, to navigate through this disease. But it sounds as if you are doing a good job.
You are, most certainly, not alone. Everyone here knows what it feels like to fell lonely and isolated when surrounded by people who do not understand. We all understand and we want you to know that you are not alone. :lol:
Peace and Blessings
03-14-2008, 10:06 AM
Hi sam...48 yr old female from nova scotia...still waiting on a diagnoses...waiting waiting waiting...
This is a friendly site with lots of information to share. :)
It doesnt have ME!
03-14-2008, 10:35 PM
Hello sarah! I am a male with Lupus. If you think ur rare, dont worry, I have only found one other male in 3 years that has lupus! As you probably know, Lupus is found 90% of the time in women? But if you ever want to chat, I can tell you what I have done to fight this crazy disease! I am currently trying to make Lupus as well known as cancer HIV or Cerebal Palsey...We need to use our voice and I know that with enough VOICES, we will be heard!!!
03-14-2008, 10:41 PM
Hi and Welcome Sarah,
Welcome to the lupus forum. You are not alone, there are many of us who have been where you are or headed in that direction. There are a lot of caring people whom you can share your day and issues with Lupus, have a good laugh, and learn a lot from others.
06-08-2008, 06:38 PM
I Sarah, I'd really like to talk to you. You left a post on one of my questions and I'd really like to get to know you. I'm on AIM all the time so it's not hard to reach me. I sent you my AIM in a PM so yeah... just let me know yours then. :)
06-10-2008, 06:05 PM
Hi Sarah -
Welcome! I am relatively new as well, and have found this a great place to learn about this crazy disease, and to vent your frustrations. The people here are just wonderful - caring, non-judgemental and funny!! I am so glad I found my way here, and am glad your here too!
06-12-2008, 08:32 AM
My name is Kathy. I have SLE and have had it for a very very long time. I am 49 years old. I did not get diagnosed with SLE until I was 36 years old. I have had the symptoms since early childhood. I suffered for many years with Lupus symptoms and went to the doctors repeatedly only to be told time and time that I was worrying needlessly and that I did not have Lupus. They made me feel like a real hypo big time. When I was 36 a doctor took the time to listen to me and test me for Lupus. That is when I found out that I indeed did have SLE. He immediately sent me to a very good Rheumatologist who told me that I have the most classic case of Lupus that he had seen in years. He got my Lupus under control quickly and I take several different medications. I have a new problem now and that is PA (pernicious anemia) and the doctor told me that I will have to take vitamin B12 shots every month for the rest of my life. I am wondering if this has happened to any of the other people with long term Lupus? Just wondering.
06-12-2008, 09:28 AM
Hello Again Kathy :lol:
I responded to your other post! Just wanted to say "welcome" once more!
Peace and Blessings
06-12-2008, 09:57 AM
Yes you did respond and answered my questions very well and put me at ease. Thank you so much.
06-12-2008, 10:03 AM
You are most welcome. We are here to help in any way that we can!
Peace and Blessings
06-12-2008, 02:31 PM
I also had to take B12 shots every month for a couple of years. I actually probably still need them, but I dont see that neuro any more and he's the one that perscribed them. they're not bad at all, although, Ive never been afraid of needles or anything. Ive been pretty sickly my whole life, so I got used to alot of shots a long time ago. They will make you feel better, though, with regards to energy in particular. And they really are one of the only ways your body will actually absorb Vitamin B as the oral ones are not even remotely as effective. I know, pain in the neck treatment for a pain in the neck disease. The good usually outweighs the bad, though. Right now, I am so happy my flareup is settling down, but the steroids are KILLING ME. :twisted: :mad: Im sweating, shaking, cant sleep and I am a raving you-know-what. I dont even want to talk to anyone because Im really short with them and cranky. :evil: (I love these little faces!!). I actually feel right now like I have a hangover, which stinks seeing as i dont drink!! But, its the lack of good sleep and brain fog thats doing it. Im just going to chill in my air conditioned room tonight I think, and ask to be left alone!! lol. BBL -
06-13-2008, 02:46 AM
I am sorry to hear that you are having so many problems with the steriods. Have you told your doctor about how the medications are affecting you? I know I have a terrible time with steroids and my doctor has put me on non-steroidol drugs for the most part. I think that the B12 shots are helping a lot. I don't have the sore tongue now and due have more energy then before and I am not as short of breath. I think that you may want to have your doctor that you are seeing now re-evaluate you to see if you do need the B12 injections. That may help a lot with the fatigue that you are feeling. If you don't mind me asking you, but what steroid medications are you taking? Are you taking Plaquenil? Are you taking Prednisone? Have you talked to your doctor about possible Imuran? I am taking a low dose of Prednisone for a week to slow down the attack on my lungs right now, but for only a week and antibiotics due to a sinus infection along with Plaquenil, Sulindac and Imuran and Vitamin B12 shots. My medicines have helped a lot through the years, but you know there is always going to be something come up with the illness as there is no cure as of yet. I hope that they can get your illness under control. God Bless and I do hope that you get to feeling better.
06-13-2008, 08:01 AM
Right now Im on Prednisone daily (not a taper) and Plaquenil. I just started both of these though just last week, and I have to stay on them until I see my new rheumatologist. I actually havent made the appt yet (bad girl!!). I will today though. The problem has been that since the start of this flare back in the fall, my doc puts me on a steroid taper, and I start to feel better. But once the taper begins, all my symptoms come back. This has happened twice since around Nov. So this time, she wants me to stay on them (not TOO high a dose - 20mg/day - thats nothing compared to some of our friends here) until the rheumatologist decides what to do. She started the Plaquenil too, but I know that takes quite a while to start working. Im thinking that if my symptoms continue to decrease, that by the time I see the rheumy, he may start to taper me off and let the Plaquenil do its thing. I do HATE the way they make me feel, but it is really the lesser of two evils at this point. I have been REALLY sick since Jan - barely getting out of bed, really swollen, unbelievable pain mostly in hips, but most joints are involved. Also, I started to have bladder problems and seizures started kicking up again for first time in a while. So, as you know, its the choice between functioning PRETTY well while being a stark, raving lunatic OR not functioning at all. Ive had better choices in my life - lol! I hoping the side effects may start to level off a bit (please?) and I may feel a little more normal soon. I try to take it a day at a time, sometimes a minute at a time!! Thanks for writing back - you guys are all awesome and have really helped in keeping my spirits up. I just had to leave a new job (again) so Ive been a little depressed/frustrated/mad/sad blah blah! You all really help keep it in perspective. Anyday up and about is a good one, you know! Well, today's job is to wash my sheets and comforter (with LOTS of Downy - Im a Downy addict) and let them dry outside in the sun. Yummy sheets for tonight!! Oh, the little things in life!..
Have a wonderful day, Kathy - and everyone else too!
Love and prayers,
06-13-2008, 08:30 AM
I see you are really new on the medications. The dosage of Prednisone is not a high dosage and that is a good thing. You know though that Plaquenil takes a good 6 months to really kick in. It is not uncommon to have side affects from the Plaquenil especially when first starting on it. I know I did not like the nausea and other side affects from the Plaquenil either, but they do eventually taper off as the drug kicks in. I think that you will see some good from it when it gets fully kicked in. I was able to come off of the Prednisone once the Plaquenil kicked in. I eventually had to go on Imuran and have been on these two drugs and Sulindac for several years. I hope that the Rheumatologist can sort everything out for you and get you under control.
06-13-2008, 02:27 PM
Yeah, its not a high dose at all. I was on 80mg in January tapered down over 21 days or something. They still really have an effect on me though with the perspiring and insomnia. I am usually really tolerant to meds - I have been on SOO MANY MEDS in the past 10 years or so - anti-depressants, anti-seizure, allergy etc etc - plus a TON of pain meds a few years ago that my neurologist prescribed me - I mean everything.
I do not take any type of pain meds (narcotic) anymore. They are just too dangerous for me, and masked so much of the symptoms that I probably delayed proper treatment for a long time. If I was in a flare, I didnt do anything but take more pain meds - instead of trying to get to the bottom of the problem. I know there are many people who can take them and its fine for them, but its just not a good idea for me. My world became one big blurr and I just wasnt present (mentally) for my husband and children. My neurologist answered every symptom I had with more medication: morphine, fentanyl, oxycontin, oxyodone, hydrocodone, demerol, lortab, dilaudid - you name it - I was on it. Not seperately either. I would be on a time release morphine, say, with a Vicodin breakthrough. No one needs that much medication everyday for years. Eventually, your tolerance builds up, and they dont work as well, and you need more to relieve the pain. Then you start to run out of meds before your supposed to, constantly making calls to the doctor for more - and on and on. Well - I guess I just revealed a part of my story here. Unfortunate, but true. Eventually, I was dependant (actually, addicted) to them. I couldnt get off of them safely without a mediccal detox as I had been on them non-stop for 3 years. My neurologist was furious with me (hello?) and never spoke to me again. My husband was llike a lunatic. He completely blames him, though I know alot of it was my irresponsibility. I did, however, at the beginning, call my doc and tell him I thought I was developing a problem with the oxycontin. His response? Do you need detox? I said no. He prescribed me a new drug, which turned out to be Avinza which is a time-released morphine. I call that switching seats on the Titanic. (lol) I eventually got off of them - it was not easy - mentally or physically. But I havent looked back since. That was almost two years ago. In retrospect, I was using those pills to help me with the depression of being sick all the time, having to stop working, etc. So for me, they werent just for pain. And I am well aware (and a bit jealous! LOL) that many people can take them in safety - so I am absolutely not judging anyone who takes them.
OK - talk about rambling on!! But, being clean and sober today is an enormous part of my life, so, I am not ashamed at all of it. Today, I try to help others who are trying to stop as well. I am a very active member of a 12 step program today - and, despite being sick, I have never been happier. That program has an enormous effect on how I handle being sick today. It has taught me to be grateful for what I do have, to cherish my relationship with GOD and to take care of others who are in need as well.
I hope no one is offended by my story here. Its a big part of who I am today, and once I started writing, it felt OK to keep going. Thank you all for letting me share.
Love to all - and thank you ,
06-13-2008, 03:23 PM
There is no problem with your story hon. I could tell you some of the bouts on my life's journey as well. I was in constant pain from about 11 years old with Lupus Symptoms and my parents kept telling me that thems is just growing pains. We were very poor and not on medicade, so I did not get to see a doctor. I unfortunately turned to alcohol and street drugs big time. I unfortunately became an alcoholic as well as a drug addict. It was sad and well basically I saw that there was a real serious problem at the age of 19 and got into rehab into AA. It all helped tremendously. I too refuse to take pain meds, because of the problems I had in the past with them. I do take Prednisone from time to time as I am on it now. I am taking 15mg a day for a week due to a sinus and chest infection. Like I said in earlier posts I have had SLE most of my life and could not get the proper care until I was 36 and it nearly killed me when it started affecting my heart and lungs. I had inflamation of the heart muscle not the pericardium. It caused me to have a severe heart arythmia. That basically caused me to get diagnosed. I was on very high doses of Prednisone and put on Plaquenil and NSAIDs. My Rheumatologist started tapering the Prednisone down and I was off it by 6 months and that is when the Plaquenil kicked in and started working. He placed me on Imuran also, because I was still having flares, but not as severly. It is so sad, but you will find that there are a whole lot of us in the same boat that have suffered for years and years due to the doctors not knowing that much about Lupus and just how devestating this rotten illness is. I think that it is appalling the way the doctors act and treat people like they are hypochondriacs instead of really listening and doing all they can to figure out what is happening. I know I sure got sick of being blown off constantly and finally I had had enough of that when a doctor told me to go out and get drunk as there was nothing wrong with me and that I was needlessly worrying and stressing. I turned him into the AMA about that and he nealy lost his liscence. I learned to speak right up and let the doctor know in no uncertain terms that he would not get paid if he did not do as I wished etc. Please do see the Rheumatologist and make sure you have your medical history and symptoms and everything that you can think of listed and in order and do not let them bull you over. Good luck hon. keep us all posted as to how your appointment turns out ok. God Bless.
06-13-2008, 04:11 PM
Lauri, first of all, ginormous hugs to you.
Your story is exactly why I don't like to take pain meds. I nearly became addicted to Vicodin 10 years ago when pregnant with my oldest- my first case of pleurisy. I could not take NSAIDS to reduce the inflammation because I was in the last trimester. I became suicidal from the pain and depressive quality of the meds and if it were not for the life dependent on me and my husband's "tough love" in confiscating my Vicodin, I'd not be here today. I have 3 siblings who are drug addicts and alcoholics. I need to be here for my kids. 3 of my children were adopted through foster care and were taken away from their mothers for drug abuse. I will not go down that road.
06-13-2008, 04:54 PM
Thank you both Kathy and Jen -
Yes, unfortunaltely, it is very easy to become addicted to these meds. Kudos to both of you for taking the roads that you did. And, like I said before, there are many people who can take them the way they are perscribed/in moderation or as needed. My "as needed" was every 15 minutes. Yes, my husband had to do tough love as well, but for a while that didnt even work. I am so grateful that he stood by my during that awful time. He was working full time, plus side work, taking care of the kids and taking care of me. He really is a wonderful man.
There has become a major epidemic here in Boston with the oxycontin in our youth. They are getting hooked, then cant afford to buy what they need, so they either turn to crime or turn to a cheaper high like heroin. There needs to be a major overhaul in the prescribing of Oxys - some docs hand them out like candy. My neurologist was one of them. And, honestly, he is a brilliant doctor. He was the first one who - somewhat - figured out what was going on with me - and he definately believed me. But, because of that, I trusted anything he did, and did not heed any warnings that were going off in my head, and warnings from my friends and family. I thought he was a hero, you know? But he was so mad about my becoming addicted that even after I got off the meds, he refused to send the letter he had written to get me disability. He was the only doc I had been seeing for 3 years , so without his letter - NOTHING. My sister even called and very respectfully pleaded with him to send the letter and basically he told us to #%$@w. Oh well, everything happens for a reason.
Anyway - Im really happy you received my story with understanding and compassion. Its a small world, isnt it? But with the pain weve all been in for so long, its no wonder this stuff happens. See? Had someone diagnosed us properly to begin with, we would have been on safe meds to help with the pain, and maybe wouldnt have needed the other stuff. Who knows? Im just grateful that is over for me (for today anyway - lol). I keep everything in the day.
Love and prayers to both of you -
06-13-2008, 07:16 PM
You are definitely right when you say that if we had gotten the proper treatment when we first became so ill we may not have gotten into problems with addictions and things like that to begin with. I believe we both learned a very valuable lesson. You know though we can't really worry to much about what happened yesterday for yesterday is gone. We can only worry about today and do what we can with today and try to have a better tomorrow. I mean that is the way that I look at things. I feel that I am very blessed as I will be 50 years old in December and I realize that had I not gotten diagnosed when I did, that there is a very good possibility that I would not be here today.
What really makes me irate is to see how doctors treat people who are so desperately ill like they are hypochondriacs, because they do not know that much about Lupus. I think that every medical student going through med school should be made to study the field of Rheumatology and all about the many different Autoimmune illnesses out there and the affect that they have on us that have these problems and then maybe they would take the time to listen to us and help us instead of passing us off without regard to us. You know what I mean. I hope I pray that you can find out what is happening with you and get the proper medical care. I want you to go into the doctors office and you stand up for yourself big time. Have all of your medical history that you can get and can think of that is not documented and a complete list of all of your symptoms etc. Do definitely let the doctor know in no uncertain terms that you are paying him for his services and that that means you are the boss. Get him to run every test that he knows about for Lupus and other autoimmune diseases. I wish you the best and good luck with your Rheumatology appointment and please do get the appointment made and get in there to see him. God Bless.
06-14-2008, 07:49 AM
I actually have finally found a doc who thinks this is lupus and is treating me for it. She just wants me to see a rheumy as well. Unlike many here, I have seen many docs who have done all the autoimmune tests, but when my results would come back normal (I have always had a negative ANA), they said it was FMS only, and there was nothing they could do. So, for me, it was a case of them basing EVERYTHING on the negative ANA. Most of my other blood work was out of range, particularly the sed rate and CRP - which are always really high, and alot of the others.
I kind of gave up on docs for a while (I actually went all last summer without almost any symptoms). I got sick again last fall, and was at the ER a few times with pleurisy, unexplained swelling, etc. I started seeing this new doctor - who is wonderful - and without me saying too much about my past medical history, she looked at me and my blood work and said, "This really looks like lupus" I said, "I know, but I have a neg ANA" She said (FINALLY< SOMEONE!) "There are cases of lupus with a negative ANA, its rare, but it does happen." I started to cry with relief.
So, the past few months, she has tried steroid tapers, but they havent worked (symptoms kept coming back), so she has me on the striaght Pred and Plaqenil. I was really honest with her and told her my fear about going to another rheumie. I said "What if he says its not lupus and that Im fine?" She said "There is no question anymore that there is an autoimmune process going on. You ARE NOT going to be UN-diagnosed again" Again...cry with relief. :cry:
So, thats more my story - the testing was always done, but with a neg ANA I couldnt get treated.
I live in Boston, and there really are some of the best rheumatologists in the world here. Brigham and Womens Hosp actually, supposedly just came out with some breakthrough about lupus - it was in the paper apparently, but I havent seen it yet.
So my hope is, from here, is that I will continue to be treated (d'ah - the meds are working) and not told - Oopps, we made a mistake. :oops:
Like you, I dont live in the past anymore either. In recovery, Ive learned to keep it in the day - yesterdays gone, tomorrow may never come. Enjoy each moment, stay grateful and help others. I try to live by that!! :wink:
Thanks for the encouragement, Kathy. Ithink we should start some sort of coalition to change the diagnostic process. Up for it?? lol
Have a great day!!
Love and prayers -