- apls

[Guest guest]

Hi and thanks for your reply on apls. I am so behind, lolol! And I am doing the digest thing, which is confusing to me. lol! I get lost so easy. :-Þ

But anyhoo - I am going to have to check that out on apls. Years ago, I developed a blood clot to my bowels [thank God! Coulda been much worse...] and as much as I didn't like that [owww; pain], I was so grateful because it was then discovered that I have this super clotty blood. But they disagnosed me with having a "Protein C Deficiency", which they said could be hereditary or... could be from the Lupus.

Both of my Grandmothers died from major strokes. :-( so I assumed it was hereditary. But... nevertheless [is that one word?]; I was put on Coumadin. The doctor said [the Hematologist; a great one] that he was surprised I had not had a stroke yet. phew... I know I was a lucky one.

Then years later, I moved and was tested for the anti-phospholipid thingy and the doctor was all freaked out telling me I *do* have Lupus I defiitely do!! lolol! I am scratching my head thinking ok.. Obviously when I started seeing him he must have not believed me - typical doctor, but he did that blood test and.. Well so he was concerned I guess. [that wasn't when I was dx'd though - that was years before].

But anyhoo - nope; no one has ever mentioned the apls but.. This doc did say my clotty blood is probably why I had all the miscarriages I had told him about.

Drat. I know how you feel. :*-( I was prone to developing twins [fraternal] and lost 5 babies that I know of, and possibly 6. The last one almost killed me; almost bled literally to death [long, pisses-me-off type story; something that should not have happened] and now Ican not get pregnant. I have my uterus [but now it has Fibroids - yippie] and one ovary and no tubes now. None of the moron docs I saw back then even wanted to believe I was sick, let alone had a blood-clotting disorder to cause all those miscarriages.. duh. They should have suspected *some*thing???

Well anyway. I do have some real sore spots. :-) But that is what we are here for no? :-) I wish I had my laptop fixed so I could write in bed... That is one big reason I can't keep up; the chair I sit in isn't great as my right leg gives me a lot of trouble. So... here I have almost 700 emails, lolol! I have given up all the groups I want to.. lol! But if I ever get caught up, I can get off digest.

Hello to all the newbies; I am a newbie here too. ;-) I am 41, have the typical SLE and other secondary diseases and Fibro Myalgia too, live alone with my kitties in the midwest and... well - what else is there to say about my exciting life? <VBG> lol! Oh the FM... I wasn't dx'd with that until after about 8 or 9 years after the Lupus started.. Then a lot of the symptoms made so much more sense, and is sometime's more painful than the Lupus.

My eye doc says I probably do have some Sjrogen's going on [it seems to act up on and off and is secondary, so it is not severe thankfully]. And I was never offically diagnosed with Raynaud's but wow oh wow my fingers are in instant pain in the cold.. I can not touch frozen things for more than a few seconds or even handle cold meat like most normal people, or my fingers are just in pain... And no one understand's that unless they have it! lol! aargh. Mine don't turn purple or blue or anything though... I do have a lot of red tones in my skin though, now. Oh and chronic migraines. :-Þ Oh and IBS [ I am sure I am forgetting other things!]. And my nerves are often shot, lol!

For medicines, I take Hydroxychloroquine; I alternate with 400 mg. one day and 200 the next [i am told I tolerate it well so I am lucky], 5 mg. steroids every other day, Miacalcin [oh yeah I am in Osteopenia - that was 6 years ago though and today I told my doc I want another bone density asap, and it is scheduled in a month..], 4 mg. Coumadin now [i was on 7 mg. for yearrs, but then my blood thinned more and more.. ?], 10 mg. Prozac, Ambien and low-dose Xanax for sleep, and take either Darvocet or Vicodins for pain. I am soooo tired of the Vicodins. sigh.. But I remember a time when I couldn't get much more than Ibuprofen for pain.... and that was so so frustrating.

Ok I am done for now. :-)

Have a good day!! li