View Full Version : Freshly diagnosed
12-26-2008, 03:28 PM
Hiya folks. I have been diagnosed with SLE about 2 weeks ago, although it didnt really sink in until today that my sickness actually has a name and it is not in my head as I was beginning to believe...I have been visiting doctors for nearly 2 years and was even referred to a haematologist after blood tests revealed a low neutraphil count amongst other blood tests I dont remember - for him to not even tell me he thought I had lupus, and just recommend going back for more blood tests in 6 months time. 6 months later I visited my doctor again to see how my bloods were looking - he read the letter from the specialist to me saying they 'thought' it might be lupus, but were not sure...although my hair was falling out, I was knackered all the time and had a rash and massive mouth ulcers - he told me to come back in 3 months. I switched doctors and eventually asked them to specifically test me for SLE - for which I was asked to justify...eventually the results came back with a positive ANA and I was referred to a Rheumy guy - who told me it is def SLE and I now need to go to a clinic. I am on plaquenil for the time being, have to go back to the clinic in a month to assess medication needs...some more tests came back and I have positive ENA or something - dont even know what that means.
I am 28 years old and due to get married this year...I dont know what to do! I dont feel I can talk to people about it as I will be moaning...as there are no physical symptoms I dont want people to think I am hypochondriac! It makes me want to cry when I see my hair on my pillow or on my desk at work sometimes when I type my fingers sieze up, I feel like I am sinking into a hole and dont want to burden people with it! I am so sorry for the massive post, had a lot to get off my chest! I have been reading your posts fora couple of days and you all seem to be lovely!
sorry - feel better already just putting it in writing!
I thought I'd take the time to welcome you to our group. I'm Rob, and I was diagnosed with SLE in 2004. I am 40 years old. I am very sorry to hear that you were diagnosed with this disease. But, I would imagine, you are somewhat relieved to know what has been causing all of your seemingly unrelated symptoms. I know I was. It's a double edged sword. You don't want to be sick, but you need to know what is wrong, because, like the rest of us, you probably knew deep down that something was not right.
You have a very real disease. It IS NOT in your head, and you are not a hypochondriac. Lupus is indeed a serious disease, but it is also something that can be controlled, and dealt with effectively in many cases. It is not an end by any means. We have members here who live with, and thrive despite Lupus for many, many years. One member has been living with it for over 40 years, and my own mother who is now 72, has lived with it since her diagnosis in the mid 90's. So there is every reason in the world to have hope, and be positive.
It can be difficult, and sometimes impossible for others to understand this disease. Many of us, myself included, look perfectly healthy. I look like a fit guy who takes decent care of himself, and those who don't know me, would never suspect I have any health problems at all. That can cause a lot of stress, tension, and bend relationships with friends and family to the breaking point. How others will react to you, and your new diagnosis, is something you cannot control. Some will try to understand, and some will not. But that does not change the fact that your first priority is to take care of you.
What should you do? Well, I believe you are already doing what needs to be done. You have a definite diagnosis, and you are taking Plaquenil. Plaquenil is one of the best tolerated, and most effective drugs prescribed to keep Lupus under control. I've been taking it for more than four years now with no measurable bad effects. I dread what my disease would be like without it. It does take time to work though, so you need to stay on it even if at first it seems to do nothing. Sometimes up to six months pass before any benefits are seen, but not always. It took a couple of months for me. You are also reaching out to others with Lupus, seeking advice, and support. That is a very, very good thing. To be able to talk to others who understand can be as good as the best medicine out there. It can make a huge, and positive difference. Especially for those who are newly diagnosed.
Practical things you can do are things like wearing sunscreen, and avoid the sun whenever possible. I live on the coast of Maine, and we don't get much sun anyway, and I would imagine in the U.K. it's much of the same. But I always have my sunscreen and hat with me in case I need it. It's very hard to do, but you should also avoid stress as much as possible. I know, sometimes it's inevitable, but any reduction can help you avoid a "flare", as we call it. My last suggestion, is something it sounds like you are already doing. Learning about the disease can help you become a more informed, and educated patient. An educated patient can be their own advocate. Many, in the healthcare industry worldwide, are ignorant of the facts in regards to Lupus. It's a sad reality that we must sometimes deal with. Take charge. Know the disease you are dealing with, and be assertive, with your rheumotologist and other various specialists.
Look at me, now I'm the one writing a long post! I want you to know that you are not alone, and that you are welcome here anytime. This site is about support, and communication. Never be afraid to talk, vent, cry, tell a joke and laugh, whatever you need. Make yourself at home.
12-26-2008, 05:20 PM
Welcome to the site. My name is Kathy and I just turned 50 years old. I have SLE Lupus and have had it for some 45 years or so now. I did not get diagnosed until I was 36, but had symptoms since the age of 5. Litterally for years and years I went from one doctor to the next to be told, too many times to count, that I was worrying and stressing needlessly and that there was nothing wrong with me. It was terrible to say the least. I am glad that you got diagnosed and can be on medications now for it. You can live with it and do pretty well. I hope that you keep posting.
12-27-2008, 01:02 AM
I just wanted to welcome you and let you know that we are here for you. You can talk to us about anything and at least one person will have had the same issue and can get you through it :D You are right, everyone here is lovely and in your post you sound lovely too......see you already fit in with all of us :!:
I am 29 and not married I have been dating the same man, Tim for two years. Life is a bit different for us and even for the ones who love us. There is a section here for our loved ones to go in and talk to other family members going through the same thing. I have encourages Tim to jump on and see what others in his shoes are going through.
Congrats on the engagement and upcoming wedding :!: That is wonderful and we need to get you feeling better so you can enjoy every minute of it :wink: When I first got sick I lost a lot of hair and the sores in my mouth and my nose were horrible. I eventually found the right medications and my hair stopped falling out and the mouth sores and nose sore improved :!: For now, you should ask for Miracle Mouth Wash. It is a mixture of litocain and other goodies to helpp the sores go away and to make in numb so we can handle it. It is a perscription, so you will need to ask your doctor.
Just remember it is not in your head and it is real. You now know what you have and can alter your daily life to help you stay well. You can find the right medications that will really help you feel better :wink: We are all here for you, during the good times and bad. It is sometimes hard to share with our loved ones because they might not understand 100% and that is where we will all jump in :wink: Welcome to the forum and welcome to our lives, you have just made soooooo many friends by taking the first step and posting.......keep it up :angel:
12-27-2008, 03:56 AM
thanks everyone - it is a massive help knowing there are other people out there going through the same thing! It honestly is a big weight off, I have never met anyone with lupus before and not a single person I have told about it has ever heard of it before, and every time I try to describe it there is something different I tell, as there are so many symptoms I experience at different times...I am sure I am confusing people!
Thanks for the advice Rob. As yet I have not noticed the sun having an effect on the way I feel, but as I have only just been diagnosed maybe I have not associated the sun with the illness as yet...all I know is that I have been feeling pretty rubbish for quite some time now, sometimes are worse than others but I am yet to correlate things together! I dont even know how to predict a 'flare' - I didnt know what they were, just that sometimes I feel worse than others, I am sure that as time goes on I will be able to associate particular symptoms with the onset of a flare but I just feel a bit like my head is a mess at the moment.
Danica01 - How does Tim deal with you being poorly? he sounds like a great guy, very supportive! were you diagnosed before or after you started seeing him? My fiance, Adam, is fantastic and has been really supportive, he wants to know all he can about the illness, I just feel sometimes like I am going to be a burden on him and he doesn't need that. He says he wants to be there for me and support me through everything - I just feel bad for him sometimes....
When I was first diagnosed I was so relieved that there was an actual illness and not something I had made up in my head, it is only now that it is sinking in that there are going to be big changes I am going to have to make. My Rheumatologist says that it might get better and I may be symptomless in a few years, but I am not sure how far I believe him with that one as it seems with most people this is not the case...(as nice as it would be!)
Thank you for your support though, I cannot tell you how pleased I am to have found people who understand!
12-27-2008, 10:50 AM
I was diagnosed way befor ehe came into my life. I will do a "check in" with him and ask him how he is handling things. This gives him a chance to tell me how he feels and I know by getting things off of his mind really helps. He is a huge mountain biker so a lot of the time I force him to get on his bike and ride. This clears his head, which in the end makes him more available when I really need him. He also does a lot of research on his own and reads up on everything from symptoms, diet and even new medications. He is very active with me a my Lupus :wink: I also worry about him and wonder if he wishes he would have walked away when he met me. I worry that this is to much and I think to myself that he deserves better. He tells me that I am the one to good for him and that he never looks back and is very glad that we met. It also helps him to talk to other people beside me. He talks to his friends about it and his family. I just really think communication is big for us and all of our loved ones :wink:
Adam sounds amazing and he really is a keeper :!: A lot of people struggle with their loved ones and it seems we have hit the lottery when it comes to great support from our family . Just remember you are getting married! When you have a down day just get lost in the bridal magazines and the planning. Just do not let yourself get stressed out or you may end up feeling worse. Just close your eyes and breathe when things get frustrating, this will help you calm down and will allow your body to slow down and not get all worked up. Please, enjoy every minute of it:angel: