pink blobs said...
NikiS said...
I am in an all-out flare as I was in the sun the other day taking the kids to the zoo Sunday and now I have a bad rash on my face, chest, and even purple spots on my feet--wierd.
Describe these purple spots on your feet. Were your toes purple? Or did you have veiny looking purple areas all over your foot?
Hi Pink Blob! The purple spots actually look like round or oval shaped spots with slight hairlike lines between them. They are fairly close together so it is hard to really say--but it is quite a lot of it across the top of my foot (only on one). I also have where my toes are really purple looking at the ends of them--but the rest of my feet look fine--it is just the ends from around the bottom of my toe nails up... (wierd)! Anyways... why were you wondering? It doesn't really look like any kind of weblike look or spidery (at least I don't think so) but more almost like little discs real close together... I am feeling a little better this evening as I slept most of the day, but the rash on my face and chest is still there. It really doesn't bother me much except a little itchy sometimes (not all the time) and I mostly have issues with the joint pain and the real bad tiredness and especially the severe pelvic pain (but they say that is from interstitial cystitis I have and I am on Elmiron for it which should help after a few months to improve that).
We had a fun evening tonight with the kids. My husband grilled out some chicken and we watched SpongeBob afterwards (one of the movies). It was fun to feel a little bit better and enjoy the children! I even managed to walk next door to the playground by our house and help the kids swing and slide for a bit this evening. I wish I could feel this good more often. I really think that the Meloxicam medicine is really helping me a lot to feel better. I take it once a day and it seems to relieve a lot of the joint pain where I feel more able to move without so much pain. It is making me hopeful that we can figure out a solution to all this. I just wish the doctor could tell me exactly what is wrong--give me a diagnosis. But I guess he kind of did when he told me that he suspects Lupus but it is very hard to diagnose and he is going to have to keep taking blood for a while and keep running tests until it shows up or whatever autoimmune disease it is. He said that he is certain it is an AI disease--and pretty sure its Lupus but he can't diagnose it unless it shows up on the bloodwork or I have enough symptoms when I go to the rheumatologist for them to diagnose it... I don't know what symptoms they look for--but I guess I will just try to write down everything that I have experienced over the past year and see if they can figure out what the problem is--whether it is Lupus or something else. I am thinking of all of you. I know this is not an easy time for any of you. I am praying that God gives you all comfort and also gives your doctor's the wisdom to diagnose your conditions and give you all relief. I think sometimes that we just don't know enough about medicine--yet we know enough to dish people off.... Someday doctors will look back and realize the incredible suffering they put patients through because they didn't know enough about what was wrong... so keep your heads up and know that you are not crazy. If nothing else--know that I Believe You that you are suffering--and that God will not allow his children to suffer for long. Be blessed dears! Nicki