white gloves

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Everything posted by white gloves

  1. Hello there-- First of all I want to again thank everyone for their prior responses to my initial post. I was in a horrible state that week and this site really did help me to calm down and take a deep breath about it all and also helped me to maintain better emotionally from then until now. That sure does mean a lot to me and once I'm done with this post I will donate, because all in all regardless of diagnosis, having this site and the wonderful people here helped tremendously. Even if just to come on at 2am and browse through the info and messages. Ive been okay this past month but still in quite a bit of discomfort (ok pain, but bit of discomfort sounds not so bad). Anyway, went to Rheumatologist Friday afternoon. I like her. She is older and I was grateful because she's probably seen quite a bit in her day (lol that makes her sound really old, but you know what I mean). I typed a brief 20 year history to accompany the initial paperwork. Long story short, she seemed to think I was having a major lupus flare. She did not rule out CREST and ordered more blood work. The blood work my pc ordered showed elevated rheumatologist factor, something I was told way back when I was diagnosed with Hashimotos. Also elevated liver enzymes, anion gap and trig (which she said could be lupus related) as well as my two bouts of meningitis within 1.5 years about 15 years ago. She asked if doctors ever told me the cause of the meningitis, I replied "bad luck" was all I was told, she shook her head, and said most likely lupus. She prescribed prednisone 5mg and Plaquenil 200 mg twice/day. I started the pred Friday night and took first Plaquenil about 15 minutes ago. I have a follow up appointment with her in 3 weeks. I know I will get straight answers here. What can I expect side effect wise? Dr. told me Plaq would take a month to kick in. I told her I didn't do well on prednisone (side effects) and she said this was low dose, the doses I've had for asthma before were higher, and I should do okay with this. Well, you know at this point it doesn't matter, I will take it, just want to know what to expect. Thanks! Take good care, WG PS I have done my best not to swear or mention any brand names in this post : )
  2. Thanks to all for your input. I am committed to taking the meds, which is a big step for me. I have been good so far, though haven't noticed any difference, LOL only been a few days I know, and apparently I have a ways to go. I will stick with it. Thanks again! : ) You are all so wonderful here! Take good care, WG
  3. You are brave, hope all is well with you and you are comfortable Take good care, WG
  4. Wow, what an accomplishment -- Congrats! Take good care, WG
  5. Dear Smurfette: I hesitate to post this as I am a newbie and not yet diagnosed, but here goes: How can it not change one’s lifestyle? Circumstances change dramatically, but I believe our essence or core (the you on the very inside) is not changed, only finding ways to handle the situation, yes, and that may result in behavior that has not been typical, nonetheless, you have to change the way you live your life, which is difficult but can undoubtedly lead to new insights, higher highs and at times lower lows because you have a deeper understanding and perspective of life on many levels. As far as living one day at a time, really what else can anyone do? Sometimes it is one moment at a time, and that’s okay. All we have is the day we awoke to; I say live accordingly, if you feel awful, don’t push it and do what you can to make yourself comfortable, if you’re feeling good partake of an activity (that you’re up to) and can’t enjoy on awful days. I am new to this board and do not see a rheumatologist until August. however, many years ago I had a doctor who put me on disability for a year to allow my immune system to get stronger. I was mess, and had the Mommy guilt going on, but did what I could with my kids. My boys were 7 and 10 (now turning 21 and 24, yikes!). I would get propped on the couch (pretty much my permanent spot back then and uh seems to be going that direction again) and they would spread a sleeping bag on the floor, with snacks and goodies and we would watch movies. Were we at the park? No, was I at one of their soccer games? No, were we together having fun? Yes. My little one used to come into my room with a deck of cards and we would play games for a while when I couldn’t get out of bed. Not optimum but still… time together. I remember opening my eyes one afternoon and my son was climbing up on my bed with backward baseball cap, a pen hanging out one side of his mouth and he was dealin the cards quick. I remember thinking my son’s gonna grow up to be a bookie or a grifter running cons, he sure looked cute though. You lawyers are a crafty bunch, and I can say this with some authority as I have worked with them for over 20 years, you look at the set of circumstances on the table (and may exclaim, but assess the situation at hand and determine the best course for the best outcome under that set of circumstances. Now I am off to work and if I were to follow suit with what I wrote above, I would have called in sick today, however … Take good care! WG
  6. hi smac, Hope you're feeling better. I had such a day today and upon waking immediately took my temp, swore I had a fever this time (thermometer said differently). My prescription today: a short nap, pain pill (needed it upon waking), warm shower, jammies, rest, and sclero.org. Usually I push myself to the nth degree (a form of denial I suppose); more times than not that only exacerbates the symptoms. Today though I canceled on my friend for beach this morning and our plans for tonight and decided to sneak out of a baby shower and just come home. I felt guilty at the time I was ditching everyone, however, once home and resting felt so glad that I didn't push it and let the "guilt" go. I need to conserve energy (if possible) for the work week. Get some good rest and feel better soon. WG
  7. Hello, I have recently come across scleroderma info when reading about Sjogren's and thought I might find some answers here. I'm thinking (with a real sinking feeling) that maybe I have been suffering for years, though undiagnosed. Just got referred to a rheumatologist, appt in a month, not sure I can wait. I have had "vitiligo" for many years which has been spreading, I don't think its vitiligo anymore. Both of my hands are completely white, hence the name. I have suffered from stiff fingers and aching joints for well as long as I can remember, any my fingers look very different. Now the skin all over my body is changing and is quite different than it was a few years ago. The skin on my chest and back is similar to recent pics I have seen of sceleroderma. Of note is that for the past year I have suffered severe heartburn, difficulty swallowing, nausea, slow bowel motility (none responsive to colonscopy prep, yeah that was great), and of late the aching and pain in my joints legs and back is so severe as well as tingling that it freaks me out, though I am no stranger to pain, sometimes I wonder if I fall asleep, will I even wake up, sometimes I wonder if I want to wake up; unfortunately that is where by thinking has gone, and it's really not my style or nature. I have also sometimes have squeezing chest pains, and am out of breath after taking one flight (well prob 1.5) of stairs at work. Often the pain in my back is pinpointed and deep and brings me to tears. This sounds crazy but its all true. Do any of these symptoms sound familiar to anyone here? I stumbled on to this when reading about Sjogren's because I wanted to discuss that with my doctor, as I think I have been sufferering those symptoms. I also have Hashimotos, diagnosed about 15 years ago and am on synthroid. I am wondering if I have scleroderma. I don't want to wait one month to see the rheumatologist, though I have been suffering (in silence?) for quite some time, I feel beyond horrible. I m wondering if the rhuem is right doctor to see. Any input would be appreciated. Sorry to have rambled. WG
  8. Hi there, I want to thank Sheryl for the quick response to my post the other night, it helped calm me down to see such a prompt response, and thanks to all who replied, definitely a source of comfort during a rough time; I really appreciate it. I called the rheumatologist office and appt moved up from Sept 9 to Aug 15, I asked that I still be on waiting list for canceled appts and will call once or twice a week ("squeaky wheel"). I will get into my primary doctor next week (he's not in until WED) and ask him to run blood work so I can take those results to rheumatologist. Thanks again for the understanding, I will advise the outcome of my rheumatologist appt. Nighttime is particularly tough without any immediate distractions (such as work), so difficult to relax and sleep... Thank you, thank you, thank you all again so much! WG