Hey guys, It's so funny, when I joined here a few weeks back I was feeling really excited and motivated, but last week, things took a turn for the horrible.
About 5 years ago, I developed a rare capillary condition, Majocci's Progressive Pigmented Purpura, which caused cayenne-pepper starbursts to appear all over my lower body. The doc said she didn't know what caused it and there was no treatment, but it went away in two months and never showed its face again until 2 weeks ago when I saw two lesions on my butt.
I decided to get a second opinion from a new dermatologist, but I ended up getting far more than I bargained for. While he agreed it was Majocci's, he also looked at my hands and saw my nail beds were red, he then felt my lymph nodes (which have been perpetually swollen since age 16), and asked if anything else had been off. I mentioned that I'd been having some mild joint/muscle pain in my arms, but I thought that was likely related to my DDD breasts.
He then told me I had some of the signs of Systemic Lupus and he wanted me to come back for testing in August (he wanted to see how the purpura would progress).
I'm devastated. I'm so afraid that I might have an incurable autoimmune condition, I can barely sleep. To make matters worse, my husband is gone on business for 3 months so I'm all alone and waiting to be tested.
My question is, do any of you have lupus? While I have some signs like joint and muscle pain (only around elbows, and very very mild), capillary inflammation (the Majocci's), swollen lymph nodes and reddish nail beds, I lack others like unusual fatigue, unexplained fever, or sun sensitivity (it actually takes a while for me to burn). Are those things always implicated in lupus?
I'm getting off 9 years of birth control and improving my diet and weight loss for better health and less inflammation, but I'm afraid that if it's lupus, nothing will help. Please, someone, give me some hope!
My mom has SLE, and has lived with it for over 20 years, it's very well managed. I'm sorry your husband isn't there with you right now. No two people have the same signs and symptoms, and no two people have the same level of involvement. I've been where you are now, and my heart goes out to you. Improving your diet and losing weight (if needed) will only make you feel better, so please don't give up.
I'm sending you the biggest hug right now!
Last edited by NrsgStudent; 07-02-2008 at 02:45 AM.
My mom has SLE, and has lived with it for over 20 years, it's very well managed. I'm sorry your husband isn't there with you right now. No two people have the same signs and symptoms, and no two people have the same level of involvement. I've been where you are now, and my heart goes out to you. Improving your diet and losing weight (if needed) will only make you feel better, so please don't give up.
I'm sending you the biggest hug right now!
Thank you very much. Well, as much as I have these deep, despairing moments, I'm also trying to look on the bright side. If I've truly had it at least since my first Majocci's attack 5 years ago, and I've done nothing to manage it and this is as bad as its gotten in this time (the Majocci's if FAR less severe this go round), especially given that I've been on hormonal contreceptives (which I've read in medical literature exaggerates the illness), then it's probably not a severe case of lupus (again, if it IS lupus anyway).
I've also been talking to people who've lived with it 20+ years, and many of them (if I have it) go through much more than I do, because I feel normal in much of my day-to-day life, and then there are others that also have very mild flares and are considered only to have sub-clinical lupus and never require treatment. I don't know, but somehow I feel that the waiting/not knowing is worse than having a solid diagnosis.
I think the range of possibilities for what could be causing my issues is very broad, though, too. I suspect I'm iron-deficient (no meat for 9 years, a primary source of iron, and I have the deep ridges in my nails), I know I'm super-sensitive to the hormones in birth control (15 lb. weight gain within 2 months of starting, a 3-cup size increase, almost no period even on the lowest doses), so God knows what all those could be doing to me.
Hi Rachellia,
I just wanted to say that I know how you are feeling. I to am waiting to see a rheumatologist to see 'which' connective tissue disorder I have.. I had a positive ANA test (anti nuclear antibodies) with a very high titer... My doctor ran the blood test because I had awful pain in my knees, shoulders, hips elbows... all over... and I'm very tired all the time.... I hardly get through my shift at work.... The ANA test is one test that can help the doctors sort thru the infomation... Did you have one done ? The stress and waiting is so awful and I know what you mean about losing sleep.... I just wanted to share this so you know there are others out here that know what you are going through... My best to you and lets hope whatever our diagnosis, we will have strength to manage it and keep going... ~Caroline~
Last edited by Sweetcaroline; 07-02-2008 at 01:55 PM.
Hi Rachellia,
I just wanted to say that I know how you are feeling. I to am waiting to see a rheumatologist to see 'which' connective tissue disorder I have.. I had a positive ANA test (anti nuclear antibodies) with a very high titer... My doctor ran the blood test because I had awful pain in my knees, shoulders, hips elbows... all over... and I'm very tired all the time.... I hardly get through my shift at work.... The ANA test is one test that can help the doctors sort thru the infomation... Did you have one done ? The stress and waiting is so awful and I know what you mean about losing sleep.... I just wanted to share this so you know there are others out here that know what you are going through... My best to you and lets hope whatever our diagnosis, we will have strength to manage it and keep going... ~Caroline~
Alas, I'm still waiting for everything, the earliest appointment he could get me w/the rheumatologist is in August, he said that whatever I had, my situation would be unlikely to suddenly worsen over the next two months. He did mention though that the doc would run an ANA, some other DNA tests, blood cells counts, so on.
But God, the waiting is torture. I've always been hyper-aware about my health and body, probably because I was mostly raised by very ill grandparents and I saw the myriad things that can go wrong in the human body, so my concern when told things like that borders on the obsessive.
I wish you the very best, too. Much to my shock, the doctor said that autoimmune disease is not uncommon in women...
Hi again Rachellia,
I thought of a couple of things that might help...
I saw that your appt is in August. Mine is in late July, but I have been calling the office every week to see if they have a cancellation.. they don't have a formal 'list', but said they didn't mind if I check in each week. The other thought I had was maybe you could get your lab work done 'before' your appt. Most specialists have their 'usual' blood tests that they order for the workup. That way at the first appt, doc will have the results and maybe give you more info that day, instead of sending you off to wait yet again for the lab results... Just a thought...
My doc also tested me for Vitamin D, phosphorus, calcium, B12 and folate... My vitamin D was critically low and he gave me a pill to take 'weekly' for 6 weeks and my folate was very low... he thought it was all related... thought these things might help...
For myself, I have to have 'some' control over situations, so I call the office etc... I just don't care if the office thinks I'm a pain.. I'm very nice when I call... I'm organized when I call, have my questions written down etc..
I'm a firm believer that patients must have an active role in their care... As hard as it may be to make the calls and 'ask the questions'... I do it anyway.... I'm facing this alone for now, haven't told any family or friends yet... But I have to have some control of the situation, so if it means calling the docs offices etc.. I just do it...
Keep thinking positive Rachelli !!
Hi Caroline and Rachellia - my sister was diagnosed at age 24. She had severe fatique at the time, joint pain, etc. and her ANA tests were off the chart. She was teaching elementary school at the time and would literally fall asleep STANDING UP at a student's desk.
She is now 38, very healthy, and has three healthy kids (she was advised to never have kids as it could exacerbate the lupus). She has taken immaculate care of herself over the years. She walks an hour or does yoga mostly every day, gets the REST she needs, and is vegetarian. Her rheumatologist tells her she is essentially in remission.
So, while lupus does manifest itself differently in different people (maybe why your symptoms don't include the fatigue, etc), like nrsgstudent said, you can live very well with it.
Having said that, I'm soooo sorry you are having to go through the terrible wait, and I hope to God you don't have it. But if you do, I know there is a lot of help out there!
Rachellia, I hope that everything turns out good for you and that you don't have lupus! You do look beautiful. Out of curiosity, what is "alternative modeling"? Do you have any other photo's online that you can share a link with us?
Rachellia, I hope that everything turns out good for you and that you don't have lupus! You do look beautiful. Out of curiosity, what is "alternative modeling"? Do you have any other photo's online that you can share a link with us?
I hope so, too, though I am feeling a little better physically and the skin lesions are vanishing with no new ones to take their place.
As for your questions, since I have a goth look (black hair, white skin) and I don't fit the standard for editorial models (too short, too old, and too heavy), I do a lot of modeling for alternative clothing companies that make things like club wear, corsets, or other unusual clothes. I also do some fine art and beauty modeling (face-based, focusing on makeup, etc.). Here's a link to my portfolio: http://www.modelmayhem.com/member.php?id=14914
OMG your so pretty! I hope all works out well I have sjogren's which is a different auto immune disease.
I'm rather alarmed by how common I'm finding autoimmune conditions to be. As it turns out, a friend who came down to stay with me this weekend has fibromyalgia, and another aquaintance was just diagnosed with MS -- it's horrifying, they're all under 30, too!
And thank you for the compliment, I was about 10-20 lbs lighter in many of those shots, and that's what I'm trying to get back to. I just wish my insides matched what people seem to see on the outside.
Awaiting a Lupus Diagnosis...very scared
