Jump to content
Sclero Forums

Nina

Members
  • Content count

    125
  • Joined

  • Last visited

About Nina

  • Rank
    Silver Member

Profile Information

  • Location
    Claymnont, DE
  1. Away TOO Long

    Sorry for the delay ~ I spent Friday and Saturday in the hospital. Once again I had at least a dozen doctors looking at me and offering opinions. Everything from the blocked salivary gland to a bad case of cellulitis of the face! Well, they decided to give the antibiotic intravenously and they also discovered my potassium was very low also; probably caused by the fluid pills I take. At any rate ~ I was in the right place! Thanks so much for urging me to call. I've been very fortunate these past two years; this was my first hospital visit since '08. They released me because I "looked so good" and I of course told them (real young, cute doctors) ~ too bad you are not telling me that under different circumstances. They appreciated my sense of humor. I'm still in quite a bit of pain and I have to return to the office on Monday; and get blood work before my visit. I spent the time I had in the hospital educating everyone about "Scleroderma" since (emergency room included) had not heard of Sjogrens and knew very little about Scleroderma. I'm home and I'm fine ~ just wondering about my future. Seems my symptoms are stepping it up... I'm try to post a couple of times a week. It may take me some time to get reintroduced to everyone!~ Much love to all, Nina
  2. Away TOO Long

    I'm calling now... And thank you so much for tha spell check tip! I'll be back after my call. Nina
  3. Left side of face swollen

    Hi Sam ~ I realize this is a little late, it appears that your post was in May. I would love to know what outcome you had; did you go to the doctors? How were you diagnosed? I'm experiencing somewhat of the same problem. Although, my swelling is getting worse, even after starting a antibiotic. Would love to here more about your outcome. Nina
  4. Away TOO Long

    Hello all ~ my name is Nina and I've been away TOO TOO long. I've had several reason why, and to be honest none of that is important now.When I was here last, I believe I had just had my stomach operation (gastrectomy) and recovering relatively well. Now I have a "strange" new problem. It seems I have a saliva duct that has become clogged. Does anyone know anything about this? I first noticed a knot on the side of my face, located on the joint of my jaw. When I tired to open my mouth it hurt in the joint and the knot got bigger. By the time I got to the doctor's (just my PC) the swelling had moved to the side of my face, it had also gotten very hard, like a large hard lump. My PC doctor was concerned because he didn't understand what he observed. He had another doctor look at me and because of my Scleroderma-CREST, they called an oral surgeon to see if they knew what would cause this. They came back to tell me this is something that is common in people with "Sojgrens" ~~~~ they gave me an antibiotic, which I started immediately. Now this morning the swelling has moved down into my neck and I have a lump under my chin, around the thyroid. I have to admit I'm a little scared. I'm weak, I'm tired ~ I've slept the entire day yesterday and I'm forcing myself now to stay awake. Please excuse my errors in spelling, I don't know how to spell check! I guess I just want someone to tell me they have experienced this...
  5. Virtual Chain of Hope of Today

    Hello All , I'm here on the right (East Coast) , and I'll take any hand that is there! What a wonderful day to spend with such warm, sweet friends!! Much love, Nina (DE)
  6. Oh Penny ~ you tell such an entertaining story. I've been in that same exact place a few times, sad to say. Thanks so much for the grin... Much love, Nina (DE)
  7. Just one of those days~

    You girls are WILD ~I tell you ~ WILD!!! You've got me dancing now... Much love, Nina (DE)
  8. My turn for tears

    Oh Jeannie I am so very sorry. You have been such a wonderful support. I wish I could help in some small way. I will most definitely keep both you and your friend in my warm thoughts. Wrap your arms around yourself and feel the love I'm sending! Much love, Nina (DE)
  9. New here

    Welcome Jill and Cindy, So glad you have found our wonderful site. There are an abundant number of caring, compassionate, bright, cheerful, helpful, positive, supportive people on this forum. Don't ever be hesitant to post and believe me, there are no questions that are dumb nor should any question or concern ever make you feel embarrassed. We are all in this thing together!! Cindy, you are impressive, marathons and triathalons? Just keep on running, don't let this diagnosis even enter your mind. It may very well turn out that the Raynaud's is the worst of it for you, you just never know. So, until something else does show up, keep it out of your mind. And focus your time and energy on that wonderful little baby ~ congrats! Jill, how fortunate that you have some experience with chronic illness. I'm sure you will heed your wisdom and treat yourself well. This disease is so different in so many ways than most others, and many people just don't understand. Try to learn a little at a time, and know that each and every person experiences different levels of pain/tiredness/lung involvement/digestive involvement on and on and on. We are all different, each and every one of us!! Imagine that. Actually, I haven't posted in a while, and it seems I'm trying to make up for lost time in one post. Sorry. Just wanted to welcome both of you to our wonderful place to be ourselves! Much love, Nina (DE)
  10. Checking In

    Wow, guys... I am amazed once again, I reach out and find a sea of supportive, caring WONDERFUL friends. Thank you all ~~ Just reading all the posts brings a smile to my face for sure!! I'm still struggling, but since I seem to be such a survivor ~ I've managed to get from one day to the next. Perhaps I should tell you that I have been in and out of (face-to-face) counseling for most of my life. Since my early 20s ~ when I realized that I had a problem with depression. At any rate, I had been in counseling for the past 7 years pretty steady. Unfortunately, the co-pay got to be too much and I stopped going. I know how important that was to me and I do realize it's time to find a "clinic" that will accept me (with only my medicare payment). I am also all too familiar with the withdraw symptoms of Cymbalta ~ I ran out once and didn't have any for three days ~ I thought I was going crazy. The odd sensation that it caused in my head was maddening. I am going to come off of them very, very slowly. And I hope that my mouth gets a little better. I have a very dear friend who I am going on a short (1 week) trip with in April ~ so will keep that in my mind at all times, knowing we will have a wonderful time. Must go for now, but I promise to touch base at least once a week. Thanks again to everyone for your caring and concern. Much love, Nina (DE)
  11. Checking In

    Hello to all ~ it's nice to see so many members posting. I just wanted to check in to let members know what is going on with me. I had my EDG/APG done on Wednesday at Thomas Jefferson University Hospital. The very GOOD NEWS is that my hemoglobin is at 12 ~ a number that I have never seen! For this I am quite thankful. The doctor reported that my "spot" (G.A.V.E.) looked a lot better than it did in December. He also thinks that things should go well for me now. I should check in with my local gastro doctor (which I am going to change) and keep an eye on the hemoglobin. I'm not totally happy with the amount of time that the good doctor spent with me (perhaps 10 minutes total of both Dec. and Feb. visits). I never did have an office visit, I was just scheduled for the EDG/APG, and spoke with him before and after the procedure. So much for the "visit" to the specialist. I'm being a bit facetious while trying to deal with my indifference. As many of you may know, I've been quite down for a while now. And although I have gotten "good news" I remain in a somewhat down mood. I have been on Cymbalta for many years, and I am considering changing that because of my recent inability to bring myself up out of this slump. If anyone has any suggestions, I would love to hear them. Each day I wake up and give it my all ~ only to find myself feeling quite the same at the end of the day. Well, just wanted to check in and touch base. Much love, Nina PS Happy Valentine's Day to ALL
  12. I'm back!

    Welcome back Peanut! I have followed your journey thanks to your wonderful friend who kept us informed. It is a blessing that you are back with all your positive energy! You are amazing. Hope you continue to grow stronger and stronger with each passing day. Much love, Nina (DE)
  13. Fibromyalgia

    I was diagnosed with Fibromyalgia in 1996, or thereabouts. I think I continue to have "cycles" of Fibro ~ but I do wonder if it wasn't just Sclero. all along. Right about now, I'm not real sure about a whole lot. Still feeling pretty down and out ~ BUT as always, I'm thankful for this site and all the wonderful people associated with it. Much love, Nina
  14. Stef, Please, please, please don't let this "individual's" behavior toward you make you feel anything other than disgust for his lack of compassion and his obvious loss of interest in his chosen profession. I have had very similar experiences, with the difference being ~ I didn't have this forum to turn to. I DID walk around for YEARS thinking something was "wrong" with me mentally/emotionally. NOT a good feeling, as I am sure you know. I had three different rheumatologists; three different gastro. doctors; and two different Primary Care doctors -- and I'm still not completely happy with my primary care doctor. This is a disease that many doctors do not take the time to learn about. They don't seem to see the need to educate themselves on this disease. Why should they?? When it's so easy to just make the patient feel badly about themselves, write them off as a nut case, and see the next sucker!! Okay, I'm starting to get angry, just thinking about all the negative experiences I've had with doctors makes me shake. Please know that you are going through something that very few people truly understand. Remember to treat yourself good at least once a day! Know that you are special and you have lots and lots of FRIENDS right here waiting to hear from you! Find a new doctor and give him/her an interview. Ask tons of questions. Make him/her prove they are worthy of handling your health issues. Keep us posted -- and visit often! Much love, Nina (DE)
  15. Foam in the esophagus

    Cheryle: Did the GI doctor tell you if the foam was realted to the yeast infection? Glad you got something for the yeast ~ hope that clears it up. Much love, Nina (DE)
×