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Everything posted by nan

  1. Alice, I am so sorry that you are feeling so depressed. I think that it would be a good idea to get in touch with your doctor. It sounds like your disability came through. That should make you feel a bit better. I send hugs your way. Take care, Nan
  2. Rosa, I have GAVE and have had two major bleeds. The first time by the time he did an endoscopy I had stopped bleeding so he didn't treat it. The second time he had to treat because I was really bleeding. I had a treatment done in May then again in June. I remember feeling horrible for quite awhile. I have horrible nausea and heartburn daily so that might be why I didn't feel too badly. I do remember feeling pretty yucky for about ten days. Hopefully, your pain will soon go away. I am so sorry you are going through this. Please take care of yourself. Feel free to email or pm me if
  3. The way I deal with it is to schedule daily rests. It isn't unhealthy to rest your body when it needs it. I don't always answer the phone when it rings. I just check the messages later. Here are some things that make my day easier. I have a stool at my washer and dryer for when I unload the clothes. I have a shower chair in my shower stall. When I go out if there is a scooter in the store I use it. I get my husband to do most of my errrands. Don't feel guilty for resting. I think fatigue is our bodies telling us to take a rest. Take care, Nan
  4. Hi, I have CREST, but I don't have the skin tightening. You just need two of the letters to get a diagnosis of scleroderma. I have calcinosis, Raynaud's, esophageal issues, and telangiectasias. My ANA was positive one time and then negative another. The doctor that diagnosed me said she didn't care what the bloodwork showed, she was diagnosing me with CREST. I went to Johns Hopkins for my diagnosis. I think you should try another rheumatologist. I am so sorry that you are having to deal with all of this. Take care, Nan
  5. Sam, Thanks for sharing that. Nan
  6. This is great news! Thanks so much for sharing with us. Nan
  7. Sheryl, Thanks for letting us know. I had no idea that Suzie was so young. I am so happy to know that she is at peace now. Nan
  8. Punctual plugs are inserted in the eyelids. It doesn't hurt. The doctor puts numbing drops in first. They slow down or even stop the drainage of tears from the eye. Clear as mud?!!! Take care, Nan
  9. Hi, I have Sjogren's. I use Restasis, one drop in each eye in the am and one in each eye in the pm. Some days I use over the counter drops almost every hour in between. I also have plugs put in my eyes. I would ask your doctor about plugs. It's painless. Good luck! Nan
  10. Sam, I am so sorry that you were denied. I too think you should appeal and look into a lawyer that specializes in that. Nan
  11. Debbie, I don't have any answers for you, but I wanted to welcome you to the forum. I am so sorry to hear of your husband's diagnosis. I too have CREST. At this point my digestive tract is really messed up, but my heart, lung, and kidneys are ok. I send good vibes your way. :rolleyes: take care, Nan
  12. Barbara, That's great you got into Hopkins. I go there too. Who do you see? I go to Good Samaritan and see Dr. Saleh in the Rheumatology department. They wouldn't take me at the scleroderma dept because I didn't have a diagnosis of scleroderma yet and my rheumatologist here wouldn't commit to anything in his letter. Anyway, I love Dr. Saleh. She diagnosed me with CREST, Sjogren's , and Fibromyalgia. I see her every six months . On my next visit I am also going to see a GI doctor up there. Take care, Nan
  13. Barbara, I know that that condition can go along with Sjogren's. I didn't realize it could go with Scleroderma too. That's all I know about it. Don't you have watermelon stomach like me? I live in Richmond. Who is your GI doctor? Take care, Nan
  14. Dear Darlene, Thanks so much for letting us know. Sadie is an incredible person! It is good to know that she will be at peace soon. Take care, Nan
  15. Thanks for all of your replies. I eat every three hours because of slow emptying stomach. I must not be eating the right things. I am going to check out the link Pamela posted. Have a super day! Nan
  16. Just curious! My last bloodwork showed that I have low blood sugar. I have been feeling really worse than usual. I am wondering if it's due to low blood sugar. I am going to touch base with my primary care physician tomorrow. Nan
  17. This is great news! Thanks so much for sharing! Give Peanut a big hug when you see her. Nan
  18. Yes, I have underactive thyroid. I have had it since I was a teenager. I think that there is a connection. Take care, Nan
  19. Yes, I now use a scooter when I shop. It used to kill me to push the grocery cart. I had a stress fracture in my foot for 27 weeks, that's when I really started using the scooter. I do exercises also. I have fibromyalgia also which makes my muscles really hurt. Take care of yourself! Nan
  20. Sara, Thanks so much for the latest update! Peanut is amazing and she is very fortunate to have you for a friend! Hugs to Peanut! Nan
  21. Gizelle, I did that for about six weeks. One time I woke up with both arms and both legs in the air. It was restless legs and arms which can be due to low iron. My hemoglobin was 6.1 and I had to be hospitalized and have 2 transfusions. I have watermelon stomach(GAVE) which is lesions in your stomach that bleed spontaneously. Do you have this? How long have you been doing it? I think you should check your hemoglobin level. Take care, Nan
  22. Karen, Thanks! I will do just that! Have a good day! Nan
  23. Sara. Thanks so much for sharing with us. Lisa has been on my mind and I am sorry to hear about all she has gone through...... She is very lucky to have a friend like you. Nan
  24. Thanks for your advice. At this point I don't have any ulcers my hands just hurt and have small paper cuts on them off and on. My Raynaud's is really bad. Have a good day! Nan
  25. My rheumatologist at Hopkins wants me to try the paste because I can't take Norvasc due to low blood pressure. She didn't tell me how to use it and the instructions with the med are weird. Do I just rub some on the tips of fingers and cover? Thanks ahead of time for your expertise! Nan
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