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About Denelle

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  1. I am truly sorry that I wasn't there to offer more support to Lisa. I am glad that she has such a great friend in you. I look forward to talking to Lisa when she is able. I see that she is going home!!!! Congratulations. I see you have made amazing progress!!!!!!!!!!!!!!!!! Awesome. Your transplant buddy, Denelle
  2. Hello, I have a different take on this. Diagnosis, living with the disease, transplant, post transplant... I went from a dark place to a wonderful place that is full of HOPE. I appreciate all of the friends and family that I have. I try to work on making true and meaningful relationships. I understand that it is important to cultivate your relationships. I feel grateful for my experiences. People call me brave, but it was just what I needed to do for me!!! This journey has been fraught with dilemmas. And that is not over... but now I have HOPE. I do believe this disease has changed me. But having this transplant may have changed me even more. The changes are both positive and negative. I have learned (for the most part) to accept myself for me. I am determined to live life to the fullest; I have been given a second chance and I don't want to blow it. I try to be more understanding of others... we don't always know the whole story. Aloha, Denelle
  3. Way to go Peggy!!! I am glad you are fighting with everything you have. You rock! Love ya, Denelle
  4. Hi, What is a dexa scan? I am getting a bone density scan done next week. I am in premature ovarian failure and have been having issues with my phosphorous level. Both of these can lead to bone loss. Thanks, Denelle
  5. Yeah!!! I'm glad another transplant patient is going home!!!!!!!!!!! I was so happy to get home. I just couldn't stop smiling. Your fellow txc buddy, Denelle
  6. Hi, I have some experience with this. Try contacting your local representatives to see if they can help you. Talk to others who have appealed and ask to see their appeal letters. Retain a lawyer to represent your rights. Get statistics. Get letters from your doctors that state that a transplant is in your best interest because ______________ (fill in the blank with whatever is appropriate.) Mostly, don't accept no. Try going to the media in your area to see if they would be interested in covering a story about this. Ask for help from the institution that you are going to for the transplant. I think that is all I can think of right now. But seriously, don't give up. Be a burr in their saddle!!!! Denelle
  7. Everyone is right - sometimes this disease is just overwhelming. Give yourself a chance to be sad for lets say 20 minutes and then brush your hands of it. Accept, deal with it and then dismiss it. I once heard of someone who gave herself 20 minutes everyday to have a pity party and feel sorry for herself, but that's it. I don't know if this will work, but it's worth a shot. One thing that caused emotional upheaval for me was steroids. Everytime I hear the doctors mention steroids I practically - shout "NO". I won't take them - I had real mood swings and issues with them. I'm thinking of you and I hope things get better. :P Denelle, transplanted to Chicago for a stem cell transplant
  8. I would love to see you here too! Things are going smoothly now after a bumpy weather delayed start. I am done with most of my testing :) If everything goes as planned I will have my mobilization chemo on Friday. I am excited, but nervous. Please keep in touch. I love good wishes, (hint, hint). Denelle, now transplanted to Chicago
  9. Hi, I honestly don't think the Mayo in MN is a top sclero center, but that is just my opinion. Denelle, now in Chicago because I'm getting a stem cell transplant!!!!!
  10. Hi, I decided to go for it because of the unknown. I don't know in which direction this disease will progress and I am only 30. I can't live a life knowing this disease will always be causing me problems. I have faith that a stem cell transplant is the right thing for me... simply because it makes sense. I am not super sick, but have mild/moderate lung involvement. It is progressing and I want to be able to live my life... the way it used to be. Good luck in your decision, Denelle
  11. Hi y'all, I wish I had more news, but alas I am still waiting for final monetary negotiations to be completed. I always hope that it will happen the next day.... and I yet I am still waiting. I hope once I hear that the negotiations are finalized that I will get appts right away. I just had a thyroid ablation and according to my MN doctors they won't do the transplant until my TSH is normal, so I hope that happens quickly. Thanks for the good wishes, I will keep you updated. Denelle in MN B)
  12. Hi y'all, I had a racing heart and a really high heart rate (120-130 at rest) and it turns out I had Grave's disease. I was misdiagnosed 2 years ago with Hypothyroidism and nobody wanted to negate that diagnosis. Unfortunately for me, that meant suffering for several months before someone figured it out. -- So consider having your TSH checked. Good luck, Denelle in MN B)
  13. Wow- I am so impressed that your family is so supportive. You are one lucky duck! Denelle
  14. Wow, it is amazing how we all suffer from this simple symptom and how drastic the affects can be. I hope we all take these tips to heart and use them. Thanks for all the sharing, Denelle in MN
  15. Hi, Does anyone else have Grave's disease? I have been having symptoms for many months, but no one put it together until I saw a cardiologist. He then referred me to an endocrinologist who ran more labs and is likely diagnosing Grave's disease. I do an uptake test Tom-Fri and then they may dose me on Fri if I come back positive for Grave's disease. What can anyone tell about what to expect? Thanks, Denelle in MN B)
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