I am a new member. I have been in denial for about 3 months and I finally went to my family practitioner who stated that my blood test showed positive signs of Lupus. I admittedly did not tell her the complete truth but new immediately knew what she was looking for. Of Course, she asked have you ever had a rash in the shape of a butterfly? I responded, what are you looking for, Lupus. She was shocked with my response and I told her that I was not a dummy and new how to research.
Here is the truth. I am a boater, power, sailing, anything to do with the water. I am always careful to cover up w/masses of heavy duty sunscreen. Then, at the end of the summer I developed a rash on my face, not like a butterfly, but a bit like acne. As a woman in her mid-40's and quite vain, sad to admit the truth, I always loved the fact that my skin was in such good condition that I did not need to wear make-up. I was the envy of my gal pals. The last time I went sailing I wore sunscreen, make-up and a hat. I got this horrific rash. It has been since September and this rash took complete control of my face. I went to a dermatologist who told me I had adult acne and gave me topic medicine that made it worse. Actually she was a nurse practitioner. Anyway, she saw me 3 times and then gave up because she then failed to return my calls.
Next, I called my family physician. I knew this was not pimples. It hurt to put my face on a pillow and it was as if the rash was on top of another rash. My glands were swollen and every little cut on my body became infected. Hence, my Internet investigation. Oh yeah, My body felt like it had the flu. Any old injury I ever had hurt like it just happened. I was bed bound for 5 days. I guess it does not take a doctor or a rocket scientist to figure out I did not have adult acne.
So here it is. My blood test positive for Lupus, I have a rash, real bad, not butterfly, joint pain, feels like sciatica, the rest of the body aches have fled, thank god. I have been under a tremendous stress and have been sleeping like Rip Van Winkle. Ordinarily, I can not sleep.
I do not want to "own" this disease so I have been resting a lot, and meditating. To my delight, the rash is lifting and I am starting to feel human again. I am going slow, especially for my type "A" personality. I am use to walking at least 20 miles a week and doing yoga. I have stopped everything. Mostly because I am in pain. Oh yeah, my blood test shows something wrong with my liver function.
I am being sent to one of the top immunologist/hematologist on the east coast. I was a regular of his 15 years ago for an autoimmune problem that was never named. Basically, 15 years ago my white count was revved, as he put it and was making me tired and sick. He treated me for 5 years w/B12, and re-inoculated me w/all my old childhood inoculations.
I am sitting here constantly shifting because of the sciatic pain. What do you all think?....looks like a duck...quacks like a duck?
I would appreciate any input you might have to offer. I do not have an appointment yet, with the blood/immune doc. yet. I did cry for 2 days but I am over it. I want to move on & do what I have to do.
Welcome to the group, AnnMarie. Sounds like you're where many of us have been: suspecting, but not knowing. Don't jump to conclusions yet - there are a lot of things that look very much like lupus. Other autoimmune diseases among them. No single blood test is proof-positive, but some are better indicators than others. I've always found the Lupus Foundation of America website helpful for information on diagnosis (and lots of other things, too.) www.lupus.org It DOES sound as though you're experiencing lupus-like symptoms, that's true.
It's a bitter pill to swallow - no one knows that better than the members of this board. But, there is 'life after diagnosis' and it can be just as fulfilling and rewarding as life without lupus. But it does take a different shape and it means making new choices and setting new priorities. I hope your road will be a smooth one - a quick diagnosis is a lot less frustrating than waiting a long time to hear what you know in your heart is true. In the meantime, keep this board in the "favorites" of your computer and visit often. There are a lot of good people here who have a wealth of experience, and are willing to lend an "ear" anytime you need to vent, or question, or even to cry.
Hi Ann Marie,
Welcome.......I too was everything water. Water skiing was my passion, had my red cross lifesaving and I taught both. I loved it.
Well I am one of those who are trying to learn what life after Lupus is like. I had symptoms for at least 10 years, but only went to the Doc when I could not ignore them anymore. This last year my stress level was upped and the "symptoms" that were on again off again for a while went nuts.
I also have some tests that say that my liver is affected. The first being hep c test. But looks like false positive, but the Actin smooth antibody was high.
If you need to talk I am here. Many of us here are in the same leaky boat that you are in. Your doctor may tell you that you have a bunch of lupus-like symptoms but not actually say that you have lupus. Many here have the same diagnosis.
Welcome to our family. Somewhere, I think under new members, is a list of labs they usually run. We have all been where you are and where you have previously been. I grew up waterski-ing. Prior to becoming ill, I ran 5 miles per day and swam in our pool 45 laps. It took a while to get a diagnosis (3-4 mos) and I too ended up bedridden for about 5 days crawling to the bathroom. At some point, you grieve for the fun and healthy things we all took for granted; but then you have to move forward.
Sunscreen, nylon clothes, and polyster will become your friend; they are sun protective. Check out Coolibar; as they are having a sale. It usually begins in September and runs until all items are sold. Some of us also react to flourescent lights; I did. Plaquenil will become your friend; and you will need to get your eyes checked every 6 months. I am not saying that it is easy; but we learn to cope and take precautions.
On Amazon there is a really excellent book by Daniel J. Wallace, Lupus for Patients and Families. Rent it from your local library or buy it so you can reference health issues during different times of your life.
Hang in there and take care. We are all here to listen when you need an ear; and we have been there or are heading there. There are a lot of experienced and loving people on this board that are compassionate of what othes are going through.
As you've seen, everyone here is very informative, supportive, and helpful. As has been said, we've all pretty much been where you are. No one want to have a chronic illness, but having one does not mean the end of your life (or your activities). It merely means that you will have to make some necessary changes in order to manage that illness.
One of the things about Lupus (as Hatlady mentioned) is that it can mimic so many other auto-immune/connective tissue diseases. For this reason, it may take up to a year before you get a definitive diagnosis. Just insist, during the diagnostic process, that your doctors treat your symptoms so that you do not have to suffer unnecessarily.
It is good that you have done research so that you can be knowledgeable about your illness as possible and so that you can make informed decisions with your doctors. You are fortunate to be referred to an excellent immunologist/hemotologist...they are pretty much the same as a rheumatologist. If not, request that you also be seen by a rheumatologist.
We are here to provide answers, information, comfort, support and understanding. You are not alone!
Peace and Blessings
To everyone who replied,
Thanks, and I will keep you posted. I am trying not to think to far ahead, and stay in the now. It will be a relief and a loss to be confirmed of the diagnosis. I just want to be proactive as fast as I can. I am hoping that meditation will help and I have been meditating every day. The first and only words I think during this time is "disease leave this body".