Most of the people on this forum sounds somekind reconciled with their diseases, doesn't diggin on it anymore, seems they had lost all their hope for cure, they are just getting used to live with their disease. Most of the people are just posting themes looking for sympathy, or just to share with someone their hardships. How they switch from one drug to another, how they ache. As I see very few are those who still has the spark that says "I will live normally again, I want to, and that's why I am looking for and belive in the cure". The absence of enough such people realy makes me angry. But I think that if I also loose my faith for cure, I may also be like that;( Well, because I seriously cannot accept that way of living I would have 2 possibilities, or the get cured, or to die. And thus will not change until I'm alive.
You all people, do not repress your faith.
Soon there will be a realy good tratment or even a cure for many of the AI diseases. I bet on.The science goes very far.
Aaah, no Marius! Dude...I'm all for the future man! That's why I'm in the field I'm in! I am specializing in Rheumatics & Autoimmunity with the hopes of using a nice fat PhD in research. It's going to happen.
I feel I have all of the hope in the world....sometimes stupidly so. Because like you mentioned...I can't imagine a whole lifetime being the way I am NOW. That would be a horror.
What I feel most people and myself included are dealing with is the struggle to get to point of consistancy. For example, the AI conditions I have sent me bee-line to the ER & 5 days in the hospital...so it's kinda hard to shake the sometimes "hard reality" that living with an out of control disease really does take "accepting" disease and sorrow for a while.
Every individual is complex and so many people have steady & controlled symptoms and live normal happy lives...while many others have a day to day struggle with waking up and the entire days goal just getting through the hours.
You do bring up a very important issue. And yes, no one should lose faith no matter how advanced a disease state may be.
Keep on being you Marius! I am sure that many others will gain from your strength. Like for me?...reading your post did jump start my gusto for "let's kick this AI in the butt!" and sometimes that kick is needed.
Post Edited (Marius123) : 9/1/2006 2:36:42 PM (GMT-6)
Nice stuff Marius. Just goes to show the promise of genetic therapy for the future.
I've never had any genetic/ DNA labs drawn specific for my RA case...but to relate to your post, my labs have very high levels of the mononucleosis (which many of my docs have named it "chronic mono") and Epstein-Barr Virus titers as well. This was tested and shown in 2001, 2002 and 2003. No decrease of any of the levels...so I pay no attention to them really. I have never labeled myself with Chronic Fatigue Syndrome or Mono. Rather, I think of CFS not as a "disease" but a symptom of something greater...just my own little theory. My old employer for example...he complains of a very bad case CFS, and YES...he has HSV-2 AND HSV-6!!!! the HSV 6 I thought was a surprising find. He's also suffered several boughts of mycoplasma pneumonia and "walking pneumonia" ALSO...chicken pox as an adult! That turned into encephalitis! Interesting isn't it?
I am a fighter, and have been since I was diagnosed in 99 with RA/Feltys Syndrome. I believe everyday I WILL NOT have this disease the rest of my life. My hemotologist told me once as I almost was lunging(sp?) at him in anger of this illness,almost screaming about how I am not living like this the rest of my life, he pointed to his head and said, "its all up here". Think positive, be positive, your cells will know it. I am very careful not to get TOO down or depressed, or even think neg thoughts, tho at times its not the easiest. I came to this forum to find my long lost Erin who has Feltys as I do and share stories, but also to uplift. Thats what the whole world should be doing DAILY! We're all in this craziness together, besides, My Lord has not forgotten me. Thats my where my belief is grounded. I know it.
Post Edited (Marius123) : 9/2/2006 6:32:10 PM (GMT-6)
Hey there all,
And goodmorning! Ah...that's cute, "My long lost Cheryl!" It is peculiar to run into someone that has RA or Lupus or other AI diseases during the day...2 weeks ago my next door neighbor inquired about my bandages on my knees. I just simply said I had a condition that affects my joints and she said, "Oh get out me too I have RA." Whoa! 5 years living next to her & I never knew it! She takes Enbrel. So even at times when we feel completely alone...imagine HOW MANY PEOPLE have the SAME EXACT things we deal with. Millions probably.
Marius, thank you for sharing your background & your history refarding your girlfriend. When I was bedside nursing I always kept in mind how important it is to not only asses the patient, but the interdynamics of the significant other as well. The family, wife/husband, children...everyone is effected to some degree...not just the patient. For myself? Dear Lord! I feel so sad sometimes for my dear boyfriend of 3 years...I can imagine that it is 10 times more difficult FOR HIM than it is FOR ME in dealing with my having RA & complications. I do not know how he does it. He's so strong & supportive. But he too gets depressed about me sometimes, so at those times I try not to see him and only talk over the phone because it's easier to "fake" feeling good just with my voice! But it's for his own good, I hate to see him sad in any way. However, if I never became ill...I would never have met him! I was a patient of his! So as much as disease efffects the afflicted, it impacts the partner just as much if not more.
This turned into a really great thread. I'm interested in looking @ the site you listed, thank you.
I can reassure you Marius, that here in New York City...some of the worlds best scientest, pathologists, and geneticists are working very hard on autoimmune disease etiology & cures. One of the best, you can look it up...is the Seligman Center for Arthritis, Rheumatics and Autoimmunity affiliated with NYU Hospital. Many clinical trials are beginning.
We will all get through this. Just remind yourselves each day how much everyone has helped each other even if just here at HW...all the little things add up.
Take care, Godbless,
Post Edited (Marius123) : 9/3/2006 1:00:18 PM (GMT-6)
I have avoided reading this thread, and actually just read it this morning. I guess I do believe the cure is out there, but given my mother's experience I'm not sure it is readily available for me. I'm with Dave on this one. I believe more in making the most of my life today, rather than living for the future alone. Of course I have hope--hope for newer and better treatments, be it traditional or alternative medicine, but I do not even think of this stuff simply going away. I've had it for too long now.
With respect to sympathy pleas, I agree with most others on this forum. I post here because I feel people can better understand here than in my "real-time" world. I've gained much education and information in this forum, much of which has directed my progress with my rheumatologist. But even more than that, as Dave so eloquently mentioned, I've had my psychological and spiritual needs addressed here as well. The psychological and spiritual aspect has a tremendous impact on physical health, and it's something that traditional western medicine does not address. I consider this forum a support group, and a safe place to vent. Yes, I feel guilty sometimes venting here, but the only other people I've addressed my fears (regarding AI disease) with have been my husband and my pastor. I don't really want sympathy; what I personally need is simply to feel like others can understand my situation and that they honestly care. I try to extend that same understanding and concern to others. That is the definition of a support group, and everyone needs support at some point in their life. It is admittedly, difficult to make oneself vulnerable to others, but that's the beauty of an online support group. It's easier for me to be vulnerable online, rather than in my "real-time" life. I value everyone's input. To that end, this forum is a success.
awe, El...that was really beautiful.