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Posts posted by NorthStarHope

  1. 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, :crying:  :emoticon-hug:  :emoticon-hug:  

  2. 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*

  3. 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!!! :yes: Thank Goodness!! Please take care everyone, and thank you once again for all your kind words . As I once said before I don't know what I would have done without sclero.org , you sure have been there for me through some very rocky roads. ( It truly has been like having a guiding light through the darkest tunnel). :emoticon-hug: :emoticon-hug: :emoticon-hug: love you All!!

  4. 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 continue to be very hopeful for a brighter tomorrow.


    Take care everyone,

    sincerely, northstarhope* :emoticons-yes: :emoticons-clap: :emoticons-i-care:

  5. 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:

  6. 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*

  7. Dear miocean,

      Once again you've given me strength and support that I am thankful for!!! :thank-you:  :balloons:

     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!!!!


                                                                                               Sincerely, northstarhope*

  8. 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 after those hosipital visits.   I myself know what it's like to have lung problems, since I have copd and asthma I always have so much trouble breathing. I wish you the very best and many, :emoticon-hug:  :emoticon-hug:  :emoticon-hug: take good care!! 





  9. 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:

  10. 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.



  11.   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 tell them. 


    Thanks for touching base on this subject!!

  12. 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 place. Definitely not fun!!  :emoticon-hug:  :emoticon-hug: Hope you're feeling better!!

  13. 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!! :balloons:

                                                                                          sincerely, northstarhope*

  14. 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,



  15. 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!! :thank-you:

  16. 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!!!





    :emoticons-yes: :emoticons-yes: :emoticons-group-hug:

  17. 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.


    Sincerely, NorthStarHope :emoticons-group-hug:

    Sunshine and Happiness To All!

  18. 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 hospital, then like a hour later it subsides, this goes on and off like that all day. I am hoping the inhaler will work. By the way, I haven't heard too much from my sister lately, but my mom says shes doing okay. She has moved closer to me, but crazy as it seems we haven't spoken for almost over a week. I'm thinking sis might have got tired of all the company and needs a little me time. I do check on her by talking to mom to make sure things are okay.


    But when you have diffuse scleroderma are things ever okay? Maybe I should say that I hope for my sister and everyone out there that things are the best they can be.

  19. Dear Sandy,


    I am so sorry for your loss, my mom also had pneumonia last year, and it was truly an ordeal, i thought I was going to lose her, with my sister having diffuse scleroderma and in and out of the hospital and my mother had fallen ill, getting through another day felt almost impossible, but everyday I thank my lucky stars that my mom is okay now, because it was not more than a few years ago that she lost her mom and her sister just a few days after the holidays. We were at my grandmother's funeral and there we were told my aunt was rushed to the hospital. Life is so sad sometimes , but somehow we find the strength to continue on.

    Many hugs your way :emoticon-hug: :emoticon-hug: :emoticon-hug:


    Please take good care!

  20. Hi barefut,


    I have recently had so much numbness and tingling in my arms and legs. I am at that age of menopause and there are all sorts of weird things going on. Some women have it worse that others and I guess I am one of those women because I am having a very hard time going through change. Well just thought I would add my two cents.

    Hope all is well with you.:emoticon-hug:





  21. Dear miocean, :happy-day:


    You are truly an inspiration to all.


    It's so rewarding to know that life can offer so much when you think all is lost. When I think of how many times I have almost lost my sister, and now to see her out shopping and doing some things I thought she would never do again really makes me believe there is always hope for everyone.


    Thank you again for sharing your stories with us!! :thank-you:

  22. Hi, Lindylou


    Just wanted to let you know that my sister who has diffuse scleroderma, has had constant nose bleeds. She had been to the doctors several times with this problem. Finally I do believe they have subsided. One thing I wanted to mention that her nose bleeds always seemed much worse in dry heat, such as with furnace or heater. I myself have had a bleeding nose, last year and this year, but mine were not near as bad as my sisters.



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