bunny pomar

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About bunny pomar

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    Bronze Member

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    st.augustine,florida
  1. Alice, ask your doctor about Amitiza. It's a drug for contstipation that needs a prescription but it really works. Bunny
  2. I also suffer from alot of nausea. The doctor has prescribed Zofran and it works great without making you sleepy. Good luck. Bunny
  3. my first symptom was the Raynauds and about 5 years later I had a great deal of difficulty swallowing my food. It would just sit in my esophogus and not go down. That was when they diagnosed me with SSc. Now I have all kinds of problems so it has just progressed. I have had the disease for 20 years. good luck.
  4. I had two dental implants done about four years ago. The dentist put the pegs in and then waited a longer time that usual to attach the teeth to make sure the pegs would hold. It went fine and have given me no trouble. The ironic part is a year after they were implanted I had to stop eating food because of the SSc (systemic scleroderma) and am now on TPN (total parenteral nutrition; also known as tubal feeding). Not fair is it, especially since the procedure is so expensive. Bunny
  5. If your disability is retractive at least two years then you will be eligible for medicare. My disability was retroactive for three and a half years(that's how long it took me to get disability) and I now have medicare. There are health insurance companies with medicare plans that are very reasonable. Good luck. Bunny
  6. Sadie, I had my port put in about five years ago. I am now on my seventh port and they are running out of room in my chest. I amvery prone to sepsis and septic shock and every time I get a bad infection they take it out and put in a new one. I use my port every night for TPN and that increases the chance of an infection but my port is my life line and the only way I can get any nutrition. bunny
  7. I take the TPN because my stomach doesn't absorb anything, it just sits in there and get very distended, nauseous and throw up. I have a small tube in my stomach to hook up to a suction pump that I use when I feel distended and sick to my stomach. It happens periodically eventho I don't eat. Bunny
  8. The doctors that I see in Florida didn't know too much about the disease until they started treating me. Now they go out of their way to attend seminars and do their own research to learn as much about the disease and make sure any new treatments available. It's nice to know that they care so much and we're all learning together. Bunny
  9. sherion, I never found drinking after something got stuck to help. I could only feel the water rising in my esophagus like it was coming back up. I take 10 mg. of reglan with a third if I need it. My situation is alittle different now because I eat nothing at all. I am nourished by TPN, with is an IV 12 hour a day drip. It is administered through my portocath which has now truly become my lifeline. Good luck, Bunny
  10. Emmi, I think that it is hard for your mom to accept that you are so sick and she can't do anything about it. People handle sickness in different ways and I think your mom's way id denial. She may even feel like in some way it's her fault. Try sitting down with her and really talking about your feelings and fears about the disease and maybe she'll open up to you about how she feels. It is hard to have this disease and not have family support. I hope things can turn around for you, good luck and I hope you are doing better. Bunny
  11. I have had the same problem with swallowing my food. It felt like it plugged up and the only way I could unplug it was to throw it up. The doctor put me on reglan and previcid. You take the reglan about 20 minutes before you eat and it helps to relax the esophagus so that the food goes down. The prevacid is for the GERD. I also had my esophagus stretched during an endoscopy a few times, that helped also. I have almost no motility in my GI tract and now am on TPN (total parenteral nutrition) for nourishment. I can't eat anything solid, just clear liquids. If I eat something I get very sick. Good luck with endoscopy. Bunny
  12. I run a temperature everyday during the day from about 99.5 to 100.5. Nobody seems to cocerned so I figure it's just the disease process. Bunny
  13. Lisa, thank you for the information. I have private insurance now and it is very expensive. Medicare and a supplemental insurance will sure cut costs. I am looking for to the retroactive payment from three years back. Bunny
  14. I filed for disability four and a half years ago, on my own. After being rejected three times I finally got a lawyer, that was to years ago. I finally had my hearing in August and just got a fully favorable acceptance. Now I have to wait two months fo find out what my benefits will be. The one thing I don't understand is that I have now been eligable for medicare since '05. Does anyone know what this means for me retroactively? Bunny
  15. thank you Karen, I am on my computer almost every day. It'll be good to hear from you. Bunny