View Full Version : New to lupus
09-27-2006, 05:56 PM
My name is Nancina, after never being sick a day in my life, I have just been diagnosed with lupus. It started with a mamaogram in May with a final diagnosis in august of Lupus. The mamaogram showed enlarded lymph nodes. So, after a biopsy and the begginning of Lupus symptons, swollen hands, feet, knees and chronic fatique. During this time I was working full time, in a MBA program and my lovely step-son came to live with us.
Now I'm on predisone and plaquenil. I'm tired a lot, I've had a few fever flares and basically struggling each day. I'm an Exec. Director of a non-profit and many days I just stare in space at the computer. I've lost my passion for the job and work, my moods are errattc from emotional outburst, feelings of hopelessness and just tired. I did manage to complete my thesis two weeks ago and I have no feeling about it one way or another.
I found this forum because I need to communicate with those that understand and as I read the post I realize that I'm not over exaggerating what I'm feeling they are real live symptons of the disease.
I'm at a turning point in my career because I don't want to be slack on the job yet lately I can't help it. Any advice?
09-27-2006, 06:35 PM
Hi Nancina, welcome to the group. I'm glad you found us. I was just dx'd last Nov., so kinda new too. This can be a roller coaster. I'm sorry you are having such a hard time. I know it is hard now, but you will learn to adjust. I don't mean acceptance, but learning how to live your life day by day. You will learn how to "pace" yourself and your body will tell you when you are doing too much. Trust me on that. The key is to listen to it. Stress can be our worst enemy. And you are not exaggerating...if you don't feel well...you don't feel well. Everything you are feeling is normal...well, our verson of normal. :D
You will find great support and information here. Lupus is different for all of us....and you will probably experience something new every now and then. We have even made some of it kinda comical.
I wish I could give you more advise about your job. I was a "go getem" real estate agent and then the day came where I could no longer keep up. I have not driven myself anywhere in 4 mos. and have applied for disability. I have always been the "control freak" in my professional and personal life, so this was a big blow to come up against something that I had no control over. And then to be in this position at my age...I just turned 33. Needless to say I can relate to all of your emotions.
So, stick around. We promise to help as much as we can. We all have shoulders to cry on, ears to hear you vent, and this site to send you support. Feel free to email me anytime.
Talk to ya soon,
Kathy aka Beauchick
09-27-2006, 08:07 PM
Welcome new friend; you have found a safe harbor and a wonderful network of caring and compassionate friends. I think I can speak for all of us when I say "we've all been there"....in regards to feeling like "I'm making a mountain out of a mole hill....and suddenly the mole hill erupts....and by golly you discover - it was a mountain after all!!!
Like you, I've worked in the high-profile executive field for many years. I can distinctly remember the day - when I was blankly staring at my computer screen and the next moment - I was in an ambulance to the hospital - waking up in ICU. It didn't really hit me for a few days - and when I tried to go back to work, I had the worse time trying to keep on task, to keep focused - that my memory was "gone". As Beauchick mentioned about feeling out of control - within months I was completely lost - my life, my world, all that I had achieved and worked for evaporated in the flash of one moment. After spending months trying to figure out "what went wrong"....I have had to learn many of my life lessons the hard way.
There are many books about lupus and most all of them are very good. My physician work a book called "You Don't Look Sick" - by Joy Selak and Dr. Steven Overman. I identified with the woman immediately, and how she outlines her journey with this illness - has really served as a guide for me. I would also suggest that you stay plugged in to this site. You will find that there are incredibly gifted people who have genuine interest in helping others. I am always amazed at how much wisdom these people have to share....and I am thankful every day that I have had this site to come to.
Our administrators/moderator will be by to introduce themselves. They will all make you feel right at home. No question is too small or too big; Saysusie has poured her soul into this website - and it shows in the integrity of the website, and especially of the people that share this site.
I have discovered that asking why - seems to come as second nature. But I would like to challenge you with asking yourself "the what question". What is it that I can do now, to learn to understand this disease; what can I do to find my way through this journey; what am I thankful for today; what can I share that will help someone else along the way. I know you're not in that place right now - and we all need to grieve who we "thought" we used to be. But my friend, what I have discovered about this disease is; that it has not been the curse of my life - it's been the blessing that has taught me to be still long enough to finally understand - that it's now how fast, it's not how far - but that I am...I have the ability right now to look inside and understand that all things come our way, for a reason - and sometimes for a season.
There are so so many people here who will have so much more wisdom to share with you than I, many who have walked this journey far longer than you and I....and I hold dear their words of wisdom. Beauchick is right, lupus effects everyone differently - but what we all share in common at this site - is a mutual respect and understanding, that we all are hurting in one way or another.....and the caring that you will find here will help calm your nerves and put your mind at rest.
I applaud the tremendous triumphs that you have accomplished in your life...and remember, you have many more to come. They may be triumphs in a different arena...and that's okay too, it's the getting used to these drastic life changes that seem to be such a struggle. You have a wonderful support group here, and I will be anxious to see more posts from you. Hang in there, hold on to hope - and let us be your wings.
Please be at peace and know that you are not alone in this journey. We're a family that cares and shares with one another.
09-28-2006, 12:08 AM
Hellow and Welcome Anicnan :lol:
I know it is difficult to hear that you have a chronic and life-long disease. As Beuchick and Browneyed girl have both stated, Lupus affects each of us in different ways and the disease changes within each of us. It is a very unpredictable illness, but there are many things that you can do to hopefully make it managable. Like most of us, you are relieved to finally have a diagnosis after suffering from joint pain, fatigue, muscle pain, rash, mouth ulcers, and hair loss, etc that sent you to a variety of doctors and specialists for months and/or years. At the same time, you are shocked, sad and angry to have to have a disease.
There is no known cure for lupus, but the symptoms of the disease can be controlled. It is important that you find a good health care team that includes a specialists (preferably a rheumatologist -a doctor who specializes in conditions of the joints and connective tissues), maybe a nephrologist (a doctor who specializes in kidney diseases), an advanced practice nurse, a social worker, and other consulting doctors, like a dermatologist, psychologist, or infectious diseases specialist.
I list all of these doctors (including the psychologist) because Lupus is a disease that affects every part of our body in different ways and, as such, affects our emotional well being. The most important part of managing your lupus is taking steps to avoid and/or manage flares (periods when the symptoms of the disease gets worse). As Beauchick stated, you will need to learn how to listen to your body, how to pace yourself and do not continue to try to do those things that you once did in the same way that you've always done them. Yes, you will need to take a step back, prioritize your activities (making your health your biggest priority) and learn how to do only what you can do without excessive pain, without stress and without pushing yourself. With lupus, there are many times when you may feel tired and you may need extra rest. If you feel tires, it is extremely important that you make a point to allow yourself extra time in your schedule for rest. Keeping this in mind, it is also very important that you do some form of exercise (preferably non-jarring) as often as you can. My best advice for managing you lupus is: exercising, relaxing using techniques like meditation, setting priorities for spending time and energy, educating yourself about the disease, having a good support system. Good Self-Care is absolutely essential. Self Care includes learning as much as possible about lupus, maintaining good communications with your health professional, and developing a healthy lifestyle.
We are here to help you in any way that we can. No one here will ever judge you or tell you that what you are feeling is not real. Your symptoms are very real and we all understand that. We want to give you as much information, support, comfort and understanding as you need!
Remember, You are not alone and we understand!!
Peace and Blessings