Newly diagnosed and falling apart
Hello all. I was diagnosed with lupus and RA just this past Monday after suffering through symptoms for about eight years. I had got so tired of doctor's giving me the run-around that I had pretty much given up on doctors completely until this past May, when I suddenly it seemed as though my kidneys had gone into overdrive and my legs started swelling badly. My boyfriend (training to be a nurse) became very concerned and urged me to find a compassionate doctor who would really listen to what I was saying and take aggressive steps toward discovering what was wrong. The visit with a new GP led to a referral to a rheumatologist, and that referral led to a diagnosis. I am scheduled to have a kidney biopsy next month.
Considering that I've been suffering from symptoms for so long, I was completely unprepared for the depression that I'm now experiencing. When I first received my diagnosis, I was relieved to FINALLY have an answer as to why I feel so ill and am in such pain so much of the time. I expected to react the same way I do with any other obstacle in my life, and just roll over it without giving it much of an emotional investment. But very quickly, that relief faded and was replaced by the deepest bout of depression I have ever experienced. I guess some small part of me was really hoping that the doctor would tell me that there was nothing really wrong and I just needed a good night's sleep, and that everything would be better in the morning. :roll:
My mother had MS and her conditional went terminal when I was twelve years old. She went into a coma a year later and was completely life-support dependant. She died when she was only 42 years old. Two years ago when I experienced my first full-on major flare up of multiple symptoms, I saw a doctor who was concerned that I might be showing signs of the same disease. But when my MRI and all other tests come out negative, I thought I was in the clear. Now I'm having to deal with the reality of a chronic illness and I feel lost and very, very frightened. It may sound silly, but I desperately do not want to end up like my mother. My head is completely out of sorts. I don't even feel as though I'm the same person i was a few months ago. My self-confidence, drive and determination have all mysteriously vanished and it's starting to badly effect my personal relationships. I've gone from being a tremendously self-reliant, confident, unbreakable person, to being a scared, needy little thing who cries about everything. Needless to say, the emotional stress of the situation is exacerbating my physical symptoms. though i'm only 32 years old I've been hobbling around like an old woman (RA is in my hips), have experienced such extreme fatigue that I'm pretty much useless by about 2 o'clock in the afternoon, and just feel generally crappy. :cry:
I'm sorry to be unloading all of this here, but I feel more than a little desperate at the moment. I stumbled on this forum and after reading through a lot of posts, it seemed like a place that wouldn't mind me venting a little bit. ops: Thank you very much for "listening"
Welcome to a friendly place, Annie -- we may not have all the answers, but we have shoulders to cry on, ears to listen and arms to hug - if only electronically!
Have you talked to your doc about the depression? Don't believe that it is "all in your head" - depression for many of us is a chemical condition - it can be treated with meds, and often some "talk therapy" helps as well. Please don't let that go, treating depression can make SUCH a difference in your life!
You've just received a difficult set of diagnoses - unexpected, out of the blue. Of course you're shocked, upset and depressed! I felt the same. I thought my pain and fatigue were fibromyalgia, when I heard lupus I thought "will I be dead in a year?" Well, that was a few years ago. I suspect that's the first thought many of us have. And many others on this board have lived with lupus for years and years. I researched like crazy, but didn't find web boards (this one and one other) until fairly recently. Oh are these boards a help and a support!
A good one for you to check out - mentioned elsewhere on this board - www.butyoudontlooksick.com - read the spoon theory. It can help explain what you're going through to family and friends.
I remember - and still occassionally have - resentment toward the people walking around in shorts, halter tops and not hats in summer, and bouncing about with energy I don't have. I've become quite sun sensitive - hence the moniker - and have reacted by buying LOTS of fun wide brimmed hats. Long sleeves and slacks are the norm as well. Life goes on - I now love walking slowly and enjoying the scenery, sitting in my garden and watching the bees and butterflies - and ignoring the weeds. There are certain pleasures in being at a slower pace. It takes time to realize that, though.
Many hugs, dear, and keep posting. We're all in this together!
Its a natural thing when you are told you have something like lupus to feel so scared and depressed.
what you have to remember is Lupus affects people in differant ways.
yes many are very poorly with it...its a very misunderstood disease.
I was dx in 1978 and was so shocked and scared like you but you HAVE to be postive and remember with a good rheumy and the rt meds...a normal lifespan is not out of the question...
It is sometimes called the sister disease of MS because its a very difficult sometimes to dx.
please stay strong,and remember be positive.
sending gentle hugsx
Just noticed you're in Vancouver! Next weekend you could meet another lupie and join a fundraiser not too terribly far from you.
It is outside of Seattle, a friend from another board who calls herself "VSkydiver" organized the event, and it should be great - funding is for the Northwest Pacific Chapter of Lupus.Org. I suspect that would be the chapter for your area.
I'm a chicken - no way you'd get me to jump out of a plane! but watching - it is really fascinating. From V, you'll learn quickly that you CAN live and move forward with lupus. She's faced some very difficult times in the last year or two, and is still jumping out of planes with a huge smile on her face. If you get to the event, please look her up and tell her that you're a friend of hatlady, and share a hug for me. I so wish I could be there!
Conditions such as lupus and MS can teach us many things - one of the most important being that there is joy in life, even when there is pain. You were young when you lost your mother, which is so sad, Annie, but I'm sure she treasured every moment with you - and that she was glad for the time she did have with you. You will find your true friends as you walk this path, Annie, those who care will help you through the bad times and hel you rebuild your confidence. If you have an Employee Assistance Plan or a counselor you can talk to, do so. I found it a great help when I started down this path, as scared and unsure as you are now.
Many many gentle hugs, dear.
Thank you so very much for your kind words. I was having a really bad day when I first posted here. I woke up this morning feeling good (I slept for almost thirteen hours! :shock: ) and my mental ickyness seems to have gone away for the time being.
Days can be up and down - I'm glad you're having a good one, they are to be relished! I do my best to be energetic and go like crazy on days I feel good, and to moderate on days the fatigue is heavier. Sometimes doesn't work that way, but I've learned to accept the good and bad a bit better.
I kind of read your posts backwards - I just responded on the other forum to your ? about telling your children. Now, I just read your introduction and wanted to say how sorry I was that all this is happening to you. I think if my mom suffered with MS, and then I was dx'd with Lupus, I, too would be very depressed. It probably stirs up a lot of sad memories for you. You probably have more insight than others having lived through a loved one's chronic illness.
It's tough in the beginning. When I was dx'd, I had NO idea what Lupus was, so I didn't even know if I needed to be afraid. After the initial shock, I found I would break down occasionally (for some reason whenever I was food-shopping) I'd hide in the aisle for a few minutes bawling my eyes out. How wierd is that? Food shopping IS one of my least favorite jobs (LOL) but why it hit me there all the time is beyond me. I think it was just being alone, it was quiet and I was doing fairly mindless work and my mind could wander a little. Don't worry, hopefully all the phases will come and go, and the depression will be a thing of the past. It seems like the end of the world at first, but it REALLY isn't. We live in a very different "medical" time and things like lupus have much better outcomes now than back in your mom's day. Hang in there!
Hiya Mitch. Thanks so much for your words. I really am grateful to have found this board.
I just read your post in the other thread (about telling my kids) and can really empathize with the kind of embarrassment (for lack of a better word) that you felt when you were first diagnosed. I went for years not telling anyone when I was ill (my Doc thinks I've actually had lupus since I was a teenager) because I didn't want to be thought of as weak or anything like that. Stupid pride. And then once I was diagnosed, I worried myself into an anxiety attack that now that I had a name for my illness and it really wasn't just all in my head, people were going to start abandoning me because they didn't want to be around a sick person. I even worried that if I told my boyfriend I had lupus that he would leave me because he is a nurse and wouldn't want to deal with sick people all day, then come home and deal with another one. :roll:
Of course my fears were all completely unfounded. My ten year old daughter, Shokie, quoted Harry Potter to me to show how silly how I was being/ "Fear of a name only increases fear of the thing itself." :lol: Neither of my kids had any trouble dealing with the news. For years they had been aware of my health problems, and just because my health problems could now be described by a single word, made no difference to them whatsoever.
Ah well. I guess I'm a slow learner.