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Everything posted by quiltfairy

  1. Saw my ENT

    I was loading a load of hay up in Canada. There were a couple of us throwing straps over the load to secure it from falling off the trailer. One of the straps hit me in the head by the steel hook end. It made a permanent dent in my head, fractured my skull and blew out c5-c6 disk bad enough that the doctors called it a broken neck. I have no memory of this happening. I just know what people have told me about it. Several doctors have said I am lucky to be alive. This is why I had neck surgery and what caused the crystals to come loose in my head. I deal with short term memory loss and other issues. I have learned to cope with most of it by writing notes and setting a routine for daily functions like locking the doors at night. My dog Mariaha lets me know if I miss something. I have to stay in the kitchen if I have something cooking or I burn it, but that is getting better as time goes along. This happened in May of 2007. My neuro surgeon has told me if workmens comp had let him do the surgery right away things would be very different and if they had let him do repairs on nerve endings things would be different. My company I was driving for almost killed me. I had significant brain swelling and they refused to let the doctor treat it. So I'm very thankful for every day that I am alive.
  2. Today.

    Today I turned the big 60. I was diagnosed the day before my birthday 4 years ago. After looking up scleroderma on the internet I was kinda feeling like I should get everything into place for my death. Then I found sclero.org. I would like to thank each and everyone of you for some smiles that I thought I would never be able to do again. Thank you for helping me explain this crazy disease to my family and friends and thank all you the most for learning that scleroderma is not a death sentence and that there is life after scleroderma. May I send my good thoughts to each of you, my friends.
  3. Upset, not sure if I am right

    I have a peer support person who comes to my home. She is there to help me through all of this. We got to talking about pain and how I wish there was a pain support group in this area. She piped up and said, oh you have pain like me, my back really hurts today. So I questioned her a little further on the issue. She was going to her chiropractor and her back would be just fine in a couple of days. I asked her than if she had scleroderma and she said no. I asked her if she had any symptoms of any autoimmune disease and she said no. I also asked her if she had cancer, she said no. I said why then are you making this a competition about who has the most pain? I was so hurt by this person who is supposed to be a professional. I am thinking of calling her office and declining any more visits from her. I don't know. I might be overreacting, but then again today has been a bad day. There is a storm front going through which means it is a pain day. i would appreciate any response to help me out. Thank you.
  4. Upset, not sure if I am right

    Hooray, Amanda -- nicely said!
  5. Amanda Thorpe's Blog: Crash.

    I agree with you Shelley; my family reunion was this last Sunday and I went to the picnic for about an hour and half, then I snuck away as just that little bit exhausted me. My aunt did ask where I went to and I said I had come home, I just did not want to affect everyone else's celebration.
  6. Upset, not sure if I am right

    There are many ignorant people in this world. People state how sorry they are for me; I simply tell them, don't feel sorry for me, I don't need pity. I need support without pity, I need encouragement to continue to do what I need to do, that is all I need and then I give them this website so they can truly understand if they want to.
  7. Support for partners

    Hi Maz, Welcome to the forms . I am very sorry for your loss and my thoughts go out to you and your family. Please keep in contact with us at this time of your sorrow. My best wishes are with you.
  8. X-ray false positive for pulmonary fibrosis

    Did anyone else watch the show on the television the other night about misdiagnosis; it was almost scary like your x ray being a false positive. If I were you I would get a second opinion. I am doing that with my ears; I get fluid in my ears for no reason, there is no infection or anything like that and my doctor keeps saying it is sinuses or another one of my allergies. She has said the same thing since 2007 and now I am finally going to see an ear, nose and throat specialist on Monday. My sclero doctor said my ear canals were smaller than normal, which could be caused by the scleroderma. So please get that second opinion. I also wish you good luck.
  9. Are there any younger sclero patients here? (30s?)

    Great analogy, Amanda. I know just how you feel. I was once an owner operator of a semi truck going down the road happily then life changed all of a sudden. I am now on disability doing nothing. I have no energy to do anything most of the time.
  10. En coup de sabre.

    Welcome everyone to the forums. This is a great place even at night when a person cannot sleep. I have a dent in my head also so but it is not en coup de sabre. I have a head injury from work that has caused me to become disabled. The doctors think this is where my scleroderma came from as I had a fracture in my skull that went untreated but did heal on its own. I wear my bangs long so no one sees it. Again welcome to the forums, this is a great place.
  11. Upset, not sure if I am right

    Amanda, I was at that point with my mother a few years ago. It got down to knock down drag out arguments at one point. I decided things had to change and I knew it was not going to be my mother who was in her late 70's at the time. So I stopped arguing if she tried to start one. I simply got up and left. Now all the family has learned that I will not argue. I will simply leave. It has made things much better at my parents when I am there. There are no more holiday arguments, no more competition about who is the sickest or who has had the worse life. I just excuse myself and leave. Maybe you will have to do this with your family member. It was hard to do at first because nobody understood what I was doing, then they figured it out. Good luck with your family.
  12. The monster [computer]

    I have found that most of my friends are okay with the fact that I have scleroderma, but some of them want to also be sick. I just don't understand it. I had a friend call me today and the first thing out of his mouth was, "I have an autoimmune disease also." I asked him if his doctor diagnosed it. He said, "No, but I have hypothyroidism and a website said it was Hashimoto's disease." I got on my computer and found that there are quite a few things that can cause hypothyroidism and I suggested he see his doctor, if nothing else to relieve his mind. I also asked if he read the symptoms that would lead his doctor to do the test for it. He once again stated he had not .I then read off the symptoms to him one at a time, only I got on the Mayo Clinic website, which goes into depth on a disease, so there is no question he had none of the symptoms. I have found I don't trust many sites for illness. Some can scare a person really bad. I stand by this: If a person thinks or believes they have an illness, they need to see their doctor, if nothing else just to ease their mind. If I believed all that I had found on the computer about scleroderma, I would be dead by now. Thank goodness that I found this site, and that I am very much alive.
  13. My scleroderma is quite active right now. My hands hurt really bad it seems to be hitting my joints and when I get up in the morning it is hard to walk at first because my joints in my feet just don't want to work. I really hate to complain but that is what I am doing. I have help at home at times when either the home health aide is here or the home health nurse is here. She asked me this last week about thinking where I want to be when I cannot walk any more. It is not easy coming up with an answer for that. I live alone so there is not anybody here to help me.The bigger question for me is my babies, my she-poo and husky what about them. My son loves my husky and would love to take her in the truck with him but she is scared of him and very protective for me arround him, so I think they would need to be together a little more before that would happen. This just pains me to think about this.
  14. My scleroderma is very active right now

    Thank you guys for a quick response. I found out that my weaver and Medicare and Medicaid will pay for a full time person to be with me at some point, which is hopeful. I would have to be taught how to transfer myself but I could still live a basically independent life. I think my nurse was getting ahead of things and it scared me. My sclero expert said I would still be able with some assistance to live on my own. i often times look back at my Tony, my little she-poo, who has been through so much and has saved my life on more than one occasion. When he was a year old he was attacked by a pitbull in a rest area in Iowa. He suffered four holes in his bladder, plus a hole in the tube that ran from bladder to kidney, and he had a hematoma above each kidney. He had a mild heart attack four years ago, when he was kicked by my ex-husband , and he was in the vet hospital for two week to see if his kidneys would once again repair itself. And yes it did, but he was an expensive dog for two years. Last year he suffered a stroke and did not even know his name but he has once again learned his name, where his food is, and all his little tricks. So if he can go through all this and be fine at fourteen years of age, I can have the strength to struggle through this
  15. Her story gives me hope and tells me to never give up. Thank you.
  16. Upset, not sure if I am right

    Peer support is through mental health; my therapist assigned her to me and she is to listen and help as I need her. She can help get me to doctor appointments; the thing I really enjoy is when it is nice out we take the dogs for a walk.I did talk to my therapist about her and what was said and he replied that it is something he will have to include in teaching her and other peer support specialists. All I know about the program it was piloted in Nebraska and is in Iowa but any further than that I do not know; I will check further into on the internet and let everyone know more.
  17. Crackling sound from the lungs

    I have to ask, are you a smoker? I had crackling in my lungs and got short of breath easily, but since I quit smoking 5 months ago the crackling is gone and I can go a little farther without getting short of breath. My sclero doctor says my lungs sound much better and my next pulmonary function test will probably be better.
  18. In the hospital

    Miocean, I am so sorry to here you are so ill. I wish for you a full and speedy recovery :sickly: I hope all of this makes you feel better. Balloons to lift your spirit, a group hug just to let you know we care, and me feeling blue because you are in the hospital and of course don't forget the flowers.
  19. Update on Neck Surgery

    I am doing good and my surgeon thinks I will recover fully, but it is a slow process especially for those of us that have Scleroderma. She had me on a 2 ilbs weight limit but has upped that to 15 ilbs and I can add 5 lbs every two weeks; I see my sclero doctor next week so I hope he thinks the same as my surgeon. I will post a picture of my x-ray in photos and I will also post what I gave my mother for mothers day; she really liked her new table runner. Thinking about my mother; she will be 87 in July, she has a lot wrong with her and I think maybe she might also have Scleroderma as she has heart, kidney and liver trouble and also lung trouble. I have never mentioned it to her but I think at her age it would be better to not put anything more on her plate; she just got out of the hospital she went into liver failure because she was not getting enough oxygen and her lungs were taxing on her liver. She does have diabetes and has a terrible time staying away from sweets I hope all is well with everyone on this board: I think of everyone at night. Bless each of you.
  20. Update on Neck Surgery

    Yes, the reason was because of migraine headaches since the first surgery in 2008 I blew out C5-C6 disk so bad that I was leaking spinal fluid. I had a hump on my back that was quite large and headaches so bad that at times I would shake. It was a work-related accident but the first surgery worked for 5 years. This was to fix the first surgery. They fused my neck. Thank you for asking.
  21. Support for partners

    I just wanted to pop in and say welcome to our forms and bless you.
  22. Suffering a horrific loss.

    Dear Northstar I am so sorry to hear of the loss of your dear husband; I can only imagine what you must be going and through my heart is with you and I send you my blessing for healing and hope.
  23. 007 mom's mothers day gift

    From the album as the sewing machine hums

    she loves it I gave it to her on sunday to help her feel better as she was in the hospital