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Everything posted by yogabear

  1. hi everyone, hope you're all hanging in there ok. my first pft was abnormal. i have "severe air trapping" and have an urgent referral to pulmo. spiromentry was normal, i hear. i've had shortness of breath with even slight exertion. feels like when I exhale I can't get my breath out. i don't smoke, don't have asthma. has anyone had anything similar? i'm a bit spooked. thanks you guys, love y'all. sharon in cold washington
  2. hi mermaid and everyone else. hope all is well. i have a high ana with a nucleolar pattern as well. i also have antibody to midbody, whatever that means. i've googled mine as well, and the combo of the two scares me, as they both are unusual, yet very specific for systemic sclerosis. i have raynauds in fingers and toes, lots of dilated blood vessels on my chest which look like red freckles that blanch when oyou press them. a few on my face too. i've had reflux for a few years which is well controlled with medication. i have joint pain and stiffness...lots of it. that's what bothers me the most. but I have absolutely no swelling in my hands and feet. my white count and platelets go up and down, but kidney function is fine. all of this started several years ago when I got salmonella, and developed itp (low platelets). i had back surgery in 2005 and all of the other stuff came knocking on my door. my first rheumatologist called mine uctd, lupus-like, then changed it to mixed. my second called it limited with crest. i changed insurance and go to yet another doctor at the end of april, so we'll see what he says. all I know is that I definitely have a connective tissue disease. i am on plaquenil and an nsaid called meloxicam which helps quite a lot. i have aches and pains, for sure, but all in all, i'm really pleased with these past three years. this has been a very scary and unsure time for me, as I'm sure it is for you. please lean on the people here because they're fantastic. hopefully you come to have not much of anything. if you have more, however, know that you're certainly not alone. very best of luck to you with a smile from rainy washington, sharon
  3. hi guys!! peanut, i'm in bothell, kind of in between seattle and everett. i've noticed that these red dots stay. they are much more noticable when I'm warm (shower or washing my hands). that's how I'm pretty sure that they're vascular. barefut, i do think that these are coinciding with my son's stuff. i've been under a lot of stress lately and these dots are coming out of nowhere. i hope things aren't progressing, but the realistic side of me is saying that they are. ya know, this may sound wierd, but I find these autoimmune disorders fascinating. what are the chances that I would develop itp, only to have my son develop it also? genetics are amazing. sometimes not so great...nevertheless, amazing, huh? you all have a wonderful day and be kind to yourselves. we've all been blessed with at least one more day of life. even with our struggles, we still have each other to talk to and lean on. there are people out there in the world who don't even have that. my daughter said something to me the other day that I found to be pretty profound for a teenager. she said, "Mom, if I were diagnosed with a terminal illness, i don't think that it would get the best of me. i think that it would make me more kind." that's all she said, wouldn't elaborate any more. she didn't need to. i understood completely what she was saying. ok, my friends, take good care!! sharon
  4. hi everyone. happy new year and hope you're are doing well. my son (he has itp) is doing just fine. his platelet counts are holding steady at about 60,000. question for you all...i've noticed an explosion of telangiectasia. i used to have to really look for them. as a matter of fact, i only had a couple on my neck/chest. now, they're coming up virtually before my eyes. ok, i may be exaggerating a bit, but it sure does seem like it, lol. anyhow, they're on my chest, neck, thighs, and number two just came up on my hand. and one behind my ear (thanks, jake for pointing it out to me). do you all think that this indicates that my deal is gaining some speed? mr right indes finger continues to feel thick and tight. other than that, nothing else too new. what are your thoughts, please? thanks and hope you're all well, sharon in washington
  5. thank you all so very much for your words of concern. i have been so busy lately and haven't had the time to check in with you. my second grandchild was just born dec 4th and I've been taking care of my first grandchild while mom recovers. my son went to children's. they think he has chronic itp with an autoimmune component. all lupus tests were negative, but ana was as low as you can be and still be positive. white count and red count are fine. his platelets are holding steady at 50,000, which is ok. the dr thinks that he is following my pattern. all my stuff started with nothing more than low platelets about 14 years ago. the other immune stuff took years to evolve. this could remain itp for him and require nothing more than monthly monitoring. that's what we're hoping for. i feel guilty. my head knows that I'm in no way to blame, but my heart says otherwise. my son is a really, really good kid. he's tough. he knows that it is what it is and we step up to the plate and deal with whatever happens. all in all things are ok. i'm tired, though. i lost my insurance and the stress from everything is making me feel like I'm going down into a physical spiral. i'm having rashes on my chest and my muscles are hurting pretty bad. and I'm noticing more and more red dots on my chest and neck. whew...take a deep breath, huh? lol i just keep telling myself how blessed I am compared to a whole lot of people in the world. i'm really, really blessed. if this is all I can complain about, then life is pretty ok. thanks again you all. you're the best. hugs to all, sharon
  6. my 14 yr old son developed bruising on his lower legs the day before thanksgiving. he has a critically low platelet count of 43,000. i started off with itp (the same thing) about 14 years ago. we are going to children's hospital tomorrow hematology to see what is going on. i won't be able to log on again for a few days, but I know you all will be on my side and knowing that you'll be thinking of us will give me the strength that I need. thanks you all, sharon
  7. hi again tammy. i just saw the meds you take. i know from experience that propranolol can contribute to a whopping amount of "all-over" fatigue. when I was on it I could barely get off the couch. and this was years ago before I had any of this other stuff. i had to switch to atenolol which acts only on the heart. a significant improvement. also, the furosemide...are you taking a potassium supplement? and the neurontin can kick you off your feet too. just thought I'd mention all this, if you didn't already know. take good care!! sharon
  8. hi tammy. i agree with sweet (hey sweet)...plaquenil saved me. when I'm tired, i lie down and put my feet up...higher than the level of my heart. when I'm having good days, i try to get moving in some way to strengthen my muscles. i stretch...a lot. i've done yoga for about ten years or so and it gives me so much more strength and flexibility. hang in there and respect your body when it speaks to you. when you're tired, please rest. hugs to you and chin up!!! sharon
  9. hi everyone!! hope you're all doing well. i'm officially ready to tackle my raynaud's with diltiazem. it's actually called cartia xt, i think. i've been taking atenolol for supra-ventricular tachycardia for years, which has effectively reduced my heart rate. my blood pressure is already pretty low. my dr's plan is for me to substitute one med for the other. do any of you take this? if so, what side effects have you experienced? i've read about really low bp, flushing, edema, pounding heartbeat. trying it makes me edgy. i need a kick start from you all, please. my doctor's pretty adament about it. thanks in advance, sharon in washington (by the way, as of yesterday I've been officially diagnosis with limited and crest. my scl-70 was negative. all in all, i'm doing just fine.)
  10. hi everyone. i was an emt in a fire hall in tennessee for four years, then went into nursing. i've worked in many different areas... prison nursing, hiv/aids, endoscopy (we all know what that's about, lol), and oncology, which was my absolute favorite. i worked in medical oncology in a chemo infusion suite until I got sick and had to leave it. now I work 12 hours a week in a skilled nursing facility. it's certainly not a glamorous job, but I've found more blessings in it than you could imagine. we have quite a few terminally ill/hospice residents who make my job incredibly rewarding. what a blessing in disguise!! sharon
  11. i just wanted to check in and wish you all a wonderful day. fall is my favorite time of year. i'm really making myself stop and look around and notice everything about it that won't last too much longer. the leaves are beautiful here in washington. halloween decorations are up everywhere. it's fantastic. i spend so much of my time looking down, especially when I'm walking, that I forget to look up and take in all that's beautiful around me. so, if only for a few moments today, please stop and take a look around. i hope you find yourself smiling. warm hugs to you all, sharon
  12. hi whirlway. congratulations of the birth of your grandson!! my grandson is now 9 months old and I am an absolute fool for him. since I first started to get "sick" in the fall of 2005, i've had shingles twice. once on my hip and once on my lip (hey, that rhymed, lol!!!). it was really painful on my hip. it was only about six or so bumps in a straight line and it was super painful to light touch. i caught it early both times and started acyclovir right away. i noticed that my second breakout coincided with the birth of my grandson, so I think that stressful events contributed to mine. both times were in cold weather, too. hope you feel better!! sharon
  13. a ginormous hug to all of you who responded. i needed a little boost and some tlc. i got that and so much more. thanks again. it's so nice to know that I can feel safe to share my feelings and not be a burden to you all. i tend to be a bit stoic and don't like to inconvenience anyone, but the weight was getting a bit too much. i just need to protect my family from any more drama. it's the unknown that's really bugging me. how will I be in five years? will I no longer look like the mom that my kids love so much? will I look like a stanger to them? if I do, will they mourn the loss of the mom they knew? will all of this cause them hurt that they don't deserve? i know that there's a pretty darned good chance that I could sail through these next years and this "thing" could burn out and leave no trace that it was even here...and I could be a basically healthy lady til I'm old and gray. ok I'm already gray but it's premature so that doesn't count, lol. what I'm trying to say is that I could have been getting all worked up for a lot of nothing. i does happen. this could crash and burn and leave me with only raynaud's. but I'm smart enough to know that I'm pre-disposed to have a bunch of junk thrown my way and I don't want my kids to be undeserving victims. that's what terrifies me. i can handle anything...except having my kids suffer. ouch, that hurts. thanks again, you all. it's nice to officially be part of your "family". sharon
  14. i saw my new rheumatologist a week ago and he says I have scleroderma. he says I have tendon thickening in my right index finger. i can't close it all the way especially when I first wake up. he's sending me for a colonoscopy, upper endoscopy, upper gi swallow/small bowel test, and to cardio for an echo to rule out pulmonary hypertension. he's also putting me on cardizem for raynaud's. he believes I might have limited at this point. he did bloodwork for scl-70. no results yet. to refresh you all I have nuclolar and midbody patterns. evidently the midbody is pretty rare. i've been processing lately and have found myself having some anger issues lately. i tend to keep my cards pretty close to my chest, or so my boyfriend says. i don't share much with my family. it puts me in a very lonely place. i'm sure you all understand. i guess once this sinks in I'll feel better. anyway, glad you're all here. sharon in washington
  15. hi everyone. i recently posted a topic about an antibody that I found out that I have. i previously referred to it as midbody pattern antibody. what I have further found out is that it's called an antibody to the mitotic spindle, or nuclear matrix, or NuMA. from what I've found out, it's really rare. i read that only 2% of pts with systemic sclerosis have it, though it's prescence can be pretty specific for it. i also read that it can be associated with certain malignancies. i'm not worried about that. i'm just curious to know if anyone of you have tested positive for it? in combination with the nucleolar pattern I'm wondering what I'm dealing with. i'mseeing my new rheumatologist for the first time this wednesday, because I feel that my old one kept me way too in the dark. she referred to me as uctd for a year, then to mctd, even with negative rnp. she never even once mentioned the possibility of scleroderma evolving. as my fingers turn purple and burn in response to cold and stress for two years now, i can't help but to wonder why, lol. i often wondered why she called it undifferentiated/mixed...she brought up lupus...but what else? mixed with what else? it made me nuts, but I couldn't come right out and ask her for some reason. i figured if she didn't offer the info, then I guess I didn't need to know. anyway, thanks for letting me vent. please let me know if anyone ahs info on this stuff. sharon
  16. hey everyone. does anyone have this? i just got my records and I have anti midbody pattern and nucleolar pattern. does anyone know what this indicates? i can't find much info on it. thanks, you all. sharon
  17. i dream of having a wonderful, brilliant, well-educated, scientific mind. i'd work as a research scientist and find cures for all kinds of things.
  18. hi everyone. i pheasant hunt in the fall, so of course I have hunting dogs (smile). they're three labs...mother (Lady), father (my best buddy Gunner), and their son Bobby Jack. i also have a couple of families of squirrels that nest in the trees in my back yard. and lots of beautiful crows. i count them as family, too. i refer to them as my "woodland friends", lol. to my family I'm terribly corny.
  19. hey barefut. just wanted to let you know that I understand how you feel. sometimes I get so mad that I want to bend all my spoons til they break. don't care. it gets so doggoned frustrating to not have the energy or motivation to do what you need and want to do. a big hug is going out to you. i got fed up and fired my doctor. i'm tired of my voice being unheard. so if you need to gripe, please feel welcome to do it. we're all listening and we're all on your side. the way I manage is to be selective about what I REALLY need to tackle. i don't sweat the small stuff as much, cause I know that I'll eventually have a pretty good day. when I do, then I take full advantage of it and take care of business. hang in there!! sharon
  20. hi peanut. i've had benign essential tremor in my left hand for 10 years or so. it runs in my family. it started, but not so bad, in my right hand last year. a neurologist can figure it out for you if it continues. i'd keep an eye on it. do they tremble while resting on your lap? or only when you grasp something?sharon
  21. hi jennifer. my raynaud's started about the same time in both hands and feet. my entire toes get a dark violet color when cold, and they burn. especially the little toes. sharon
  22. hi everyone. i need to vent. what is going on with my bowels?? i've never had a problem with constipation. this is making me crazy. to top it off, my once-regular menstrual cycle is now 8 days late (no chance for pregnancy). i have a gi appt in a few weeks, but enough is enough already!! why do I look 3 months pregnant all the time? is this typical of a connective tissue disease? i know that with lupus you generally have diarrhea and weight loss. what gives? did any of you start off with this? thanks so much you all. i'm just tired of not being me any more. sharon
  23. i make absolutely sure that my children know how much they are loved each and every day. i tell them. i show them. i spend time with them and go out of my way for them. sharon
  24. hi everyone. thanks so much for your responses. the mark is the size of a freckle and it does appear a bit veiny around the edges. when I pull my lips taut it appears to be a very small cluster of broken capillaries... very small. it doesn't appear to be going anywhere any time soon. it isn't sore at all. it's quite visible and it's dark pink. in fact, my entire bottom lip is looks quite vascular. maybe it'll go away!!! thanks again, you all. sharon
  25. hello to all. i have two things of concern for you...you're input would be greatly appreciated. if you've read my post before, you know that I've had major issues with abdominal bloating and constipation. i've been taking 2-4 stool softeners a day, with bowel movements about every third day. when I last saw my rheumatologist a few weeks ago, we decided to stop my elavil 10mg at night to see if that was the cause. now I have established a pattern. 2-4 colace a day still. constipation and bloating with no bowel movements for 3-4 days, then explosive diarrhea (sometimes up to 15 per day) for about 1 1/2 days with bad cramps. i've made an appt with a gi doctor for aug 27. my second concern is that I've noticed a red dot on the inside of my lower lip for about 5 days now. it's completely flat and looks like telangiectasia. i keep looking at it several times a day in hopes that it disappears. i also am sure that if I mention it to my dr it will surely disappear moments before I see her, lol. for those of you who have these, does this sound like what it could be? i don't have any swelling or anything like that. just significant joint pain and sluggishness, which seems to be getting worse. a reminder...ana positive, nucleolar pattern, raynaud's, low white count and platelets, uctd/mctd according to dr, negative rnp and everything else. thanks so much for your responses!! sharon in washington
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