06-25-2006, 09:37 PM
'ello. My name is Stephanie and I am 28. I was diagnosed with lupus when I was 23. I had undergone a couple years of testing before I received my diagnosis, and now understanding more what is is exactly that I have, I can remember having symptoms as far back as I can recall. I have been diagnosed with SLE and Kidney Disease and some other things that I have mentally blocked out. I was also told if I don't stop smoking, I'm going to be on oxygen pretty soon. I have all the most common symptoms, extreme fatigue, joint pain, rash, migraines, depression, blah blah blah. I also had back surgery this past January. Oh, yeah, and I have carpel tunnel in both wrists. Soooo... I am pretty much stuck living on SSD. I would love to go back to work, even if it was part time, but I have been unable to find a job that I can actually perform. (The job market here is terrible) I'm up to my eyeballs is debt, so that isn't helping the stress factor much at all. I feel like I am drowning. I have actually found that I have started ignoring my disease. I find myself skipping my medications regularly and doing things that I know aren't going to help me in the long run or just sleeping all day. I decided today that I need to start coming to terms with what I have and stop pretending like it's not there. The worst part is, that my doctors have finally found medications that seem to work for me... when I take them. I'm on a path of self destruction. I'm just hoping that somewhere I will find the kick in the a$$ that I need to wake me up.
06-26-2006, 03:01 AM
You are 28, that is still quite young. Like most of us, you know that you had symptoms of Lupus long before you were diagnosed. Also, like most of us, you appear to be in a state of depression. One thing that you should know, your depression can also be a symptom of Lupus as can a host of other psychiatric problems, including anxiety, hallucinations (seeing or hearing things that are not really there), paranoia, and withdrawal. Depression occurs in lupus patients as a result of the changes in lifestyle that the illness forces on us. If we concede to the idea of depression as a natural reaction to loss, then the lupus patient is vulnerable to depression from a variety of sources. One of the best overall strategies for dealing with depression in lupus is to be able to accept the ups and downs imposed by the illness. This may mean at times curbing your expectations and the expectations that others try to impose upon you, taking it easy and reward yourself for accomplishments that may seem "small" to others, but are nonetheless significant to you.
Now, let me give you a few of my versions of "A kick in the @#!"
* If you continue on your path of self destruction, do you really think that you are the only person who will be affected?
* Do you think that your self destruction will occur without any physical suffering?
* Have you thought about someone, other than yourself, who might be affected by your illness and your failure to take control of your health?
* Have you thought about the lives that you have touched or about the lives that you will touch in the many, many years that you have ahead of you?
* Have you thought about the fact that each day is a blessing in and of itself and that you are a treasure, in more ways than you even realize? You are valued, you are worthwile, you are important and you are here for a reason!
I want you to read Solesinger"s post that I have copied below,"What Lupus Has Done For Me". I want you to start to take on a new perspective, of yourself, of your life, of your importance and of how much you mean to the people in your life and to the people whose lives you have and will touch!
"I know I spend a lot of time moaning, whining, and crying, about the stupid things this disease has done to me. The aches, the pains, the nausea, the headaches, the dizziness, the passing out, blah blah blah... But, I very rarely talk about the wonderful things that Lupus has given me. You might be thinking, "What is she talking about? Is she INSANE? Has the Lupus FINALLY started eating her brain?" To that I answer: "You shall soon see." "Well, DUH!" and "Quite possibly."
On July 15th, I will have been diagnosed for exactly one year. That's a little over two months from now. In the past 10 months, along with all the crapiness it has given me, I have gained a lot, and learned a lot as well... And I don't just mean how pronounce every drug known to man, and a resemblence to Karen Walker, either.
No, my friends, no. Lupus has given me a whole new appreciation for, well, everything. My talents, the people in my life, each day that passes... I have learned, (reluctantly) to slow down. To stop, once in a while, and smell the roses. To cherish and absorb every moment spent with the people I love... Because tomorrow may be too late.
If it weren't for Lupus, I may not really know who my REAL friends are. Nor, would I probably know of their limitless giving and support. In fact, some of them, I wouldn't know at all.
Without Lupus, I would have never realized exactly how much I can take... I still may not have... Who knows what the future holds? But, even when I have felt like I couldn't take much more, and I couldn't go on... Somehow, I have made it through... A lot of that has to do with those true friends that I was speaking of before.
Lupus has taught me to cherish the good days, as they are few, and far between at times. And has changed my definitions of words like good, happy, sad, scared, angry, energetic, tired...
So, though I complain about it... (A LOT!) For many things, I have to say: Thank you, Lupus, thank you! "
Now, I also want you to know that there is a very good chance that you can maintain a reasonably normal life with Lupus...if you take the medications and make the necessary changes. One of the most important aspects of lupus is your ability to help control the disease. Living with SLE is a challenge and an education, but people who have lupus can learn how to meet this challenge and live a full and meaningful life. With close medical supervision, most people can live a relatively normal life, that remissions or quiet intervals can occur and that lupus organizations and support groups like this one exist to provide information and coping support.
The scientific investigation into the cause and cure of SLE is proceeding at a tremendous rate led by physicians and researchers at medical centers around the world. This research has led to the improvement of tests for diagnosing lupus and a greater ability to predict when lupus flares will occur. As a result, doctors have developed more expertise in evaluating the symptoms and signs of SLE and, with earlier detection, treatment can be started sooner. Also, utilizing the advanced technology available today, laboratory research is making great progress in the search for a cure for Lupus.
Greater physician awareness, better diagnostic techniques, improved treatment regimes and the promise of a cure brings hope to all of us whose lives are affected by lupus. So, it is much too soon for you to even think about giving up or giving in.
Get Up And Fight With The Rest Of Us!
06-27-2006, 02:53 PM
Since being diagnosed 6 months ago I have refused to take any pharmaceuticals. I felt I could maybe find a natural path to remission. But a lifestyle change that big is much harder than anticipated, and will take much trial and error. And I now find myself much sicker and likely to give in to pharmaceuticals in the next few days. But my point is that someone alluded to their being in denial about the disease early on in a post I made about complementary therapies, and it burned my butt. I am not in denial, I am just thinking differently I thought to myself. I now realize I was experiencing some denial and maybe in the long term I can find a different way, but right now I am just getting worse and worse, and need to take steps right now to turn things around. I hope you find the focus that you need, but having an illness such as this so young (I am 34) is a tough reality to face. I am a paraplegic and have been for 6 years and that was much easier to accept than the Lupus. At least with that I had a pretty good baseline of health and ability, but now I don't know what each day will bring and that is scarry. I am young and vibrant and wish to be living the "good life", so I have to find joys in smaller places, but life is still beautiful and we must fight on. Take care.
07-02-2006, 04:39 PM
I've found success in meshing pharmaceuticals with other natural methods, like acupuncture, yoga or yogic breathing, vitamins and minerals, and herbs when recommended by my naturopath.
I hope for peace for you in your search for how to deal with lupus,