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Everything posted by Glenwood

  1. July is proving to be a very sad month. I am so sorry to see this news on Suzie. Having just lost my mother 2 weeks ago to this disease it just saddens me immensly to think another beautiful soul has been lost. 36 is much too young to have suffered so long. I know that I am still new to you all but please know what great respect I have for what you do here. Be at peace Suzie and say hello to my mom Sophie. Glenwood
  2. Having just lost my mother to this, my heart goes out to you Sadie and everyone whom she touched. It sounds like you are in the same peaceful state that my mom was in when she passed and I am so grateful that she is now pain free. I wish the same for you. Peace, Glenwood
  3. Hello all, I'm really glad I saw this topic today. I haven't posted in awhile since early July when my mom went under hospice and I regret to say she passed away on July 10th. My dad tried to keep her at home but it became too much for him and she started fading too fast when she wasn't getting any fluids. It's been really hard for me to read and communicate. Anyway this issue of heredity has been coming up with me over the past couple of years and my mother and I talked about it previously but I found recently how secretive she's been about her illness. After my hysterectomy last year not only am I dealing with hormonal issues but my leg/feet tingling worsened and I refuse to settle with the "restless leg" syndrome diagnosis. My grandmother has suffered with that disorder for most of her life and has been addicted to nothing but painkillers because of her misdiagnosis. I've been seeing a neuroligst who did find a significant B-12 deficiency and for awhile the supplements were working but now it's back again. Might have to have injections now. But after mom died I had another appointment and I told her I was becoming more and more concerned about this hereditary non-understanding of scleroderma after my own research and though I don't believe I have scleroderma, like many of you, I do believe that I am now predisposed to other autoimmune disorders. I also told her that I now have a 3rd cousin on my mom's side who was finally diagnosed with lupus. Originally I went to her afraid I had MS. So, she did not disagree with me on this visit and ordered more blood workup. More to come.
  4. Thank you all for your thoughts. Mom has been under home hospice care to the extent her insurance will cover for the past 3 weeks. This morning my dad decided he could no longer care for her on his own so he is transferring her to a facility. She will not take her meds (which include zanex for the anxiety) and is thrashing at him to stay away from her. She appears to be moving into non-lucidity so he has decided he needs help. Hospice here will not do anything with IVs with "in-home" care, so hopefully if she goes to the facility we can get an IV in her and hydrate her and get her some meds to make it more comfortable for her. I'll know more by later today what is happening. Thank you again.
  5. Hello all, It's been awhile since I've had or taken the time to check in and when I did today I found the postings from Sadie. I am so sorry Sadie that you are going through this, but so glad that even through your struggles you are so upbeat. I'm glad too that you have found hospice such a welcome relief. I had posted a few months ago that my mother was in the hospital with accute kidney failure and I was looking for support on what to expect. Since that time she has progressively gotten worse, hidden a lot of the "real" issues from my brother and me and a week before a planned trip to Hawaii on June 23rd went into the hospital again while they were trying to do a calcium injection. This time, her doctors finally told her they couldn't do anything more for her and suggested hospice. What a shock this was to me that she was suddenly in such a situation. I think her and my dad made a pact to keep things sounding more positive to my brother and his family, and me so we wouldn't worry. Against our better judgment she got on the plane. 3 days into the trip the vomiting and diarreah started again and 3 days later dad took her to the emergency room in Kona to have a saline solution so she could rehaydrate and get on the plane to come home. On the way to the airport she had a panic attack-I thought she was having a seizure. She barely made it on the plane and dad said she was aggitated and crying the whole way home. Since then, June 29th she has been home bound and pretty much to a wheelchair and basically hasn't had anything to eat for 2 weeks. Unlike so many of you I found in this forum, my mother has decided to no extraordinary measures to sustain her life. And she never quit smoking or having her daily margarita. This fact has frustrated me to no end. My dad has been trying to care for her this past week at home but today the aggitation began to worsen and she is fighting him on everything including taking her zanex so he is now considering admitting her to full time hospice tomorrow. So again I came here searching for information to help me figure out how far along she is and how much time we might have with her. I am truly inspired by everyone's thoughts and sharing of information and willingness to share your stories. If anyone has any information to help me understand where we are right now I would greatly appreciate it. Thank you!
  6. My mom also has had significant intestinal problems that you described as well as related to her esophagus. Last year she had diarreah and vomiting so bad she dropped to 87 pounds. For the past few years they have been treating her with prilosec and other stuff but last year it stopped working. Her new rheumetolist started her on a therapy of on again, off again antibiotics because he said her colon was just so full of bad bacteria. So continues to eat a lot of yogurt now and then when the diarreah flares up she goes on the 10-day antibiotic regimen. The doctor also found the vitamin D and I'm pretty sure vitamin K, deficiency which he said was affecting her digestive system so the takes heavy does of that, calcium and the prilosec. At one point a couple years again I suggested she take a digestive enzyme that I used to use for my own bloating and gas. It didn't work all that well for her but didn't seem to hurt. The doctors have told her that she needs the acidophalis so not sure you're doing that but might talk to your doctor about it and the enzymes. Glenwood
  7. I know my mom has suffered with her gums and teeth in general for the past few years. She was told to use a waterpic toothbrush to help stimulate the gums. The receeding and soreness is apparently due to bone loss in the teeth. Overall she was told the sclero created much bone loss and osteoporsis and has been taking heavy doses of Vitamin D. Excesive vitamin A, and maybe E may also be contributory. Glenwood
  8. Thank you all for your kind words and suggestions. I actually spent more time researching after I joined and found and reviewed some of those suggestions. I am happy to report that she came home from the hospital today with acute psnomonia. Her kidney and PH levels actually improved over the day. It could be that the steroids they injected, against her will when she was admitted to the ER, may have spike her levels. Although out of the woods for right now on that front she has to get her strength back from the broncial muck now. She's very annoyed and frustrated and I found to be no comfort when I visited her. She hates doctors and hospitals and unfortunately will not be willing to try any new therapies. Years ago I tried to encourage her to join a study going on with a specialist at CU Med in Denver, but she would have nothing to do with it. She's a very stubborn person who has resolved herself to just sustaining until it's over. As saddened as I am, there is nothing more I can do to help her except listen and be with her. BTW, Jefa, she is in her late 60's. Thank you again and I will continue to listen and blog. Glenwood
  9. Hello everyone, I'm new to the forum, actually just located this today. I also found out recently that my mom has been keeping her increasing creatinin levels to helself and my dad and technically she started into acute failure months ago. She is now about 4.5. I had no idea what this meant so I started searching for answers today and decided to join the forum to seek any additional insight on what to expect. I say "expect" because she refuses dialysis. She was diagnosed with scleroderma almost 20 years ago now. A few years later she went into a sudden kidney failure and we were told to prepare for the worst then because she refused any extraordinary life saving and signed a DNR. They predicted her death within the week. She received last rights, we called in all her friends from around the country and were preparing her funeral. Suddenly (many would say miraculously, but I'm sorry I don't have the faith), she recovered. Since then it's been up and down over the years. She went through a bad bout over a year ago and dropped to about 87 pounds. I've always felt a little helpless over the years and now I'm feeling guilty that I didn't do more to find out more about what was really going on with her too. I've just let my dad handle it. Last year I did start some research and convinced to test for celiac but it was negative and she vowed to not continue tests or new drugs or anything "out of the ordinary". So here we are now and after going to the ER for a non related issue they found out her PH level was almost off the chart and her creatinin is going up more quickly than her doctors expected. If anyone can refer me to more detailed information or offer thoughts on my situation I would be most appreciative. Thank you and I offer my support to anyone suffering with this far too unrecognized disease!
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