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Everything posted by NorthStarHope

  1. NorthStarHope

    Untitled Album

    My husband and I 1981. Fovever in my heart and soul
  2. From the album: Untitled Album

    Forever In My Heart And Soul
  3. Dear Everyone Thank you all for your kind words in this time of sorrow. it truly means so much to me and my family. I miss my husband more than words can ever express. I'm so lost without him, I feel like I cannot wake up from a horrible nightmare and I am really knowing where I belong anymore for he was my everything. I love all of you here at sclero.org and I know I will always have friends here, :emoticon-hug: :emoticon-hug:
  4. To all my friends at sclero.org, I wanted to let you know that I have lost my dear sweet husband who has sat here night after night with me while I researched scleroderma and who supported me through all my hard times with my sister. My dear sweet husband has now left my side; he has suffered a tragic fall and as I sit here in tears wondering why he has been taken from me, I am so alone in my grieving. I continue on for our son that we have together who is now 30; he is my strength, I may not be back to sclero.org for sometime. Please take care, northstarhope*
  5. Dear Shelley and Joelf and Everyone, Thank you so much for your response. It is so nice to hear from all of you also!! I know my sis gets so down so often and I try so hard to lift her spirits. Its like a milestone every day if I can see her smile or just see her be happy or even to get her to think positive and make it through another day. Life can be so cruel sometimes. When I first started all my research on scleroderma there was hardly any news; all I remember is people saying no cause and no cure. :emoticon-dont-know: Now all these years later (finely) they are making progress!!! Thank
  6. Hi , I just wanted to stop by and wish everyone a Happy Holidays!! I was wondering if anyone else has read that they are testing this new medicine (Resunab) for Scleroderma. It sounds promising. Sometimes I know my sister feels like just giving up as it's such a struggle to make it through each day. It saddens me to watch her struggle like this; there are times I feel like we are running out of time before anyone will find a cure, but now it seems research is on it's way. I didn't know if I were allowed to mention the name of this medicine, but it is all over the internet. Anyway, I will cont
  7. Hi Chip, Just wanted to welcome you and wanted to let you know that sclero forums have truly helped me through some very rocky roads. My sister has diffuse scleroderma and we have been through some very rough times. Everyone here is wonderful!! At times I don't know what I would have done without my friends here. I truly hope you will find support and comfort here as well. Please take care, NorthStarHope* :emoticon-hug: :emoticon-hug: :emoticon-hug: :emoticons-i-care:
  8. I am happy today because of the many friends I have made at sclero.org!!! an I am happy because I have a new puppy who brighten our days!!! :emoticon-hug: :emoticon-hug: :emoticon-hug: hugs to everyone!!!!
  9. Hi everyone, :emoticons-group-hug: I am happy today because I was able to visit sclero forums and wish everyone well and also wish everyone happy holidays (even thought its a bit early) I haven't been around to often lately. Just so busy helping my sister and stuff. Once again I want to wish everyone the very best and hope all is well. Take care, :emoticons-group-hug: sincerely Northstarhope*
  10. Dear miocean, Once again you've given me strength and support that I am thankful for!!! I almost would believe that my sister had written that very last paragraph that you had written. Scleroderma has seemed to taken everything away from her and sitting in that dialysis chair and hospitals are just all too common, but even through all this my sister remains strong. Actually she now has a new grandchild; this is her first one and I believe this will give her strength!!! Wishing you all the very best!!!!
  11. Dear miocean, I'm sorry to hear of all the hospital visits you must go through, I know it can be so very trying. When I remember my sister being admited to the hospital so many times within a few months that we actually lost count. She has been holding steady for awhile now, she had to cut way down on her fluid intake so as she didn't go into congested heart failure again. Anyway all my thoughts are with you. I always tried to make those hospital times as pleasant as possible, coffee shops were always a plus and my sister always likes to go out to eat when she's able especially aft
  12. Hi Everyone, Just thought I would add my 2 cents worth. I am a big girl so I have so much trouble with finding anything that is comfortable. Recently I resorted to these sport bras that are like a very soft spandex material and that you can also wear like a tube top. I always buy like two sizes bigger for comfort. Also me and my sister found that a soft tube top makes a good replacement for a bra especially around the house. :emoticon-dont-know: I'm not sure this will be any help but works for me. Take care everyone!! :emoticons-i-care:
  13. Shelley, thank you very much!!! I truly miss everyone!!! Even though I have these problems of my own, I keep my chin up because I have become a stronger person as I watch my sister portray her strength and also as I speak with friends here who have given me so many kind words and show so much concern and strength!! I feel the road may be a long one, but at least we can walk it together.
  14. Hi everyone, Wow!! Miocean you must have read my mind on this one; I actually have been bothered by this same thing for sometime now; that pink is everywhere. Not saying that it shouldn't be because I recently have had a cousin suffering from breast cancer; I truly feel so bad for her and at my age I have thought a lot about what I would do if I had it, but the thing is, what can I do for scleroderma awareness? Well I suppose I do my very best to bring scleroderma awareness to people in my own way and every time I mention the word scleroderma people ask "what's that??", so I te
  15. Hi there Babs, Just wanted to let you know you are not alone with this pain from sciatica; back in 1996 I was in my car when I got struck by a delivery truck; they asked if I needed to go to the hospital, but my car only had a large dent in in so I thought :emoticon-dont-know: "well, I'm not hurt so bad". Needless to say, I walked away from the accident and I went to get back into my car to drive home and I felt like I was dragging a ball and chain behind me (so much pain.) I had therapy for 4 months back then and I still suffer from sciatica along with my pelvis being out of p
  16. I'm so happy today because I still have Sclero Forums in my life; everyone out there made me feel like I never missed a beat. Thanks to all the wonderful people here!! You all mean so very very much!! sincerely, northstarhope*
  17. Hi Jac, I just wanted to let you know that you are not alone. I have a sister who has been battling scleroderma for years now. and she is my strength. I recently found out I have COPD and asthma and on top of that I have extremely bad arthritis and planter fasciitis. Life doesn't ever seem to get any easier, but we always have hope and Sclero Forums!! Take care, northstarhope*
  18. Just wondering how many out there have allergies to gluten; seems to run in my family. My sister has major gluten allergies and now the doctor says I have it also. Reactions from such seem to make us extremely tired and have trouble breathing also a heavy heart rate for me and dizziness. Milk with added gluten makes me feel terrible; I cannot not drink the stuff. I feel terribly ill after drinking and eating certain products with this. Just thought I would ask to see if others have reactions to these things. Have a great day!!
  19. NorthStarHope

    My Dear Sister*

    My Dear Sister has defuse Scleroderma. Life has been such a struggle for her since this terrible illness has enter our lives. Throughout all of this my sister is my strength!!! She is a fighter!!! she is amazing !!! She has let me see hope when i thought all hope was lost. NorthStarHope *4* Scleroderma* Together We Can Help* Find a Cure*
  20. From the album: My Dear Sister*

    been away for sometime just relaxin!! and takin care of sis! !no pc for awhile, just stoped in to say hi
  21. Thank you plinksgirl for your reply, I am grateful for all the new friends I have made and all the help I have received in coping with my dear sister's illness, she is my North Star** when I lose hope she proves me wrong, when I give up, she doesn't give up, so for everyone out there who has been through these hard times the northstar shines for us!!! Sincerely, NorthStarHope** :emoticons-yes: :emoticons-yes: :emoticons-group-hug:
  22. Hi Everyone, :emoticons-group-hug: I have not been around for awhile, and I've been wondering how everyone is doing? Miss you all!!! My laptop runs a bit slow and I try not to keep the line tied up, so I have not been around as much as I used to be. Just wanted to let everyone know that I am spending more time with my sister and I am very very happy for this. Anyway I was wondering if anyone has any thoughts on skin ulcers; is there anything that might relieve the discomfort and pain? I will thank you all now for any thoughts on this subject. Sincerel
  23. I just love this, I havent been to a party in a long time! I am going to bring my sister, I am sure she would love to come to the party! thanks for the invite, this is a good time for all!! :happy-day: have a great day everyone!! :bye:
  24. Hi Everyone, Well I was waiting for test results from the doctor, and blood test seem to check out okay. He tested me for scleroderma and other things and I am thankful that these tests are negative. He did tell me that I have very high cholesterol, and also arthritis, also I am having some pretty major breathing problems, so he prescribed an rescue inhaler. I had quit smoking about 4 months ago, and about 2 months ago I started having trouble breathing, some people say this is because the lungs are trying to clear out. Sometimes the breathing problem seems bad enough to go to the hospita
  25. Dear Shelley Wishing you the best of luck with all of this!! take care, sincerely, northstarhope*
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