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quiltfairy

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Everything posted by quiltfairy

  1. There have been many times I have felt lonely, with no one living with me. I had to take my kittens to the humane society; I still have the older cat whom I did not have to take. Her name is Beauty and after being a victim of abuse we kinda stick together. I can tell when she has spots on her back she does not want touched. Where scleroderma comes into the story is she just seems to know when I am in pain or just don't feel good. I was going to attach a photo in the Gallery and but I was unable to find it. An animal will never just leave; they are the most forgiving, unlike friends and family. I had a family member get mad last year and as of today she is still angry. When this kind of thing happens I simply say she is missing out, so I hope nobody has that kind of experience. I hope others can tell about how 4 or 2 legged friends helped you.
  2. My stomach at times looks like I am about 7 months pregnant; the doctor did a x-ray and it showed a lot of gas, so then I got to drink 2 bottles of barium when I got to the hospital to do the CAT scan. I had to go to the bathroom and if I did not get there soon I was going to lose it; I was so plugged up that they had to call a plumber to flush the toilet! The problem was I had a bowel blocked and the barium somehow got the block to let loose. I am happy I did not have to have surgery. I now take a stool softener twice a day and if I need to I can take a extra one. Scleroderma is a crazy disease; it effects each of us differently. Oh, I lost 5 pounds that day. I send you my blessing.
  3. I had a burning on my face and I thought that it was PTSD. There are meds that can cause this. I could not even put my face up in the shower, so a friend gave me a gel to exfoliate and get rid of all the dead skin that usually sheds off. I told my rheumatologist how it helped; I even got soft skin out of it and he said sometimes with scleroderma we don't have that happen because our sweat pores get plugged. I have that problem with my feet; I caused blisters and open sores as I started to use a Palma stone to remove the calluses off my feet. I also have a prescription to help open the sweat glands, then she suggested soaking my feet 2 to 3 times a week so now when I take a shower I plug my drain so I get a good soaking. You might try these, but please remember that this does not work for everyone. I send you a blessing.
  4. I am so glad your lungs are working better and I hope they keep going on strong. That reminds of a story my mom told me; she was having what she described as a rattle in her lungs (this had to be around 40 years ago, they didn't have MRI or any other such things) and the doctors could see it in xrays, so the doctor thought it was cancer and they removed 1/2 of her right lung. This tells me I am glad for medical care now. Anyway, back to the story - at one time or the other she had choked on a peanut and with all the coughing part of it stayed in her lung and as the body thought it was bad it encased the peanut! I'm just glad she got better; that says we have come a long way.
  5. It seems like every three months when I go to one or more doctors they come up with something new. On Wednesday I went to the memory neurologist, he did a MRI of my brain and it scared me. After the MRI we now know what is causing the memory problems, the falls and not being able to come up with a word that I just can't get out . I have what is called (small vessel ischemic disease) and I found that it is mini strokes; as I understand at this is not a major problem (yet) and after the blood test at the last visit I found out I have kidney problems and my thyroid is under active. I don't want to go to Omaha any more, but all the test and MRI and x-rays are giving me some peace of mind. Some people think I'm crazy by saying now I know because I am like most people; I have a distorted imagination about what the tests are for and I am going to die today or wake up with tubes coming out of every orifice and some that are just there. I had to learn to laugh and not give up which I have done at times; the only thing about that is now I get to clean up the mess. I hope others keep their heads on straight.
  6. Thanks everyone for the great support replies. I am never alone as I always have the man upstairs.
  7. I had a few bad weeks; well a few bad months. I just wanted to get away. Sometimes it gets hard owning a house; so far things are starting to look up. I've been having memory trouble; I saw a memory neural specialist and I am having an MRI of my brain next week. I had severe head injuries, the last being the worst. I am still not sure what happened, although I was told what happened, which was in 2007 and I've been having a lot of headaches. I still have a dent in my head from it; I also broke my neck and nose and the company I was working for refused to let me go to a doctor. I was in Canada at the time. I don't remember most of the trip home but I must of made it. I was a solo flatbed driver. Sorry for the rant I will let everyone know what they find or don't find. I had a nice settlement, but it was not worth the pain and suffering I have every day. Some of the doctors think the scleroderma is from the fracture in my forehead. I just wish I could go back to work.
  8. Thank you for posting this. It has the possibility of helping many people I had the chance to sit in a group of supports that had a friend or family member that committed or attempted suicide. We worked on cognitive behavior. Every time I see my therapist she ask me that question, what I learned what prompted that question. She told me that I was one of the strongest people that she had ever worked with and that I am a typlcal peson that would attempt sucide because of the illness and coming from a background of emotional abuse. So the cognitive therapy has me once again alive. There's the great saying by Phil Donahue, "Suicide is a permanent solution to a temporary problem." I like to add that nothing is permanent. All we have to do is live today! I wish the best of luck to everyone.
  9. I am going to look for where a group of people lost a friend to lupus. On January 23rd they are have a bone marrow donation drive. I think that is a great thing and I saw the story on KTIV news station 4. I will look it up a little later.
  10. Thanks to the both of you. I did call my sclero doctor's nurse (my doctor at UNMC in Omaha) as he did tell me that it is in the high side of normal, but we do know I have peripheral neuropathy. He is a specialist; he not only treats scleroderma, but is the professor at the university of Nebraska. The first rheumatologist I had never had a scleroderma patients and he would not talk to me. When I started with him I was asked if it was ok for interns to be in the room; I said, how else would they learn? I only had problems with two of them; one did not have a good bed side manner, the other was really good but the only thing I had about him was that he had sores on his hands. As I look back I could have asked him to put on gloves and when I saw him the next time I was in the office, I suggested gloves. Anyway I could go on and on; doctors treat us for our illness, in return we teach them. That is how the world goes around and around. So for now I will keep all of us in my heart.
  11. I know I should not worry about this blood test; most of the time I know what they are or should be. My vitamin D for the first time is normal. The one that is the most troublesome is my creatine kinase (CK) went from 36 to 78. This test was run to figure out why I am falling and why my legs feel as though I have walked 100 miles going down my hallway and back. I used to stand for a long period of time; they have started to hurt and want to go out from under me. If anyone has this problem I would appreciate to know what they did. I do have peripheral neuropathy in both legs and arms and my sclero doctor is considering that might be the problem. I just do not know why my CK would jump that much in a year. Thank you Quiltfairy
  12. Thank you. The comments from my family are nothing new so I just close it out. I no longer go there alone and my aunt has learned the truth. And my therapist has done a lot to help me sort all of the rubbish out. This all started as a child, I now live 70 miles away from my family. When my mom passed away I thought it would quit, but it didn't. I have a new therapist; she is great. I will call her Monday and Wednesday. When I go to see my sclero doctor my aunt will be my driver; we have a good time, I always look forward to the drive. I always tell other people with scleroderma or other diseases to see a therapist; family and friends can blow up in your face simply because a lack of understanding. I send my blessings to everyone.
  13. My family had a barbecue today and I was not sure I wanted to go. I asked my dad how my son was doing and he said he was okay, so we had lunch. I went outside with my brother and sister in law and we were talking about this, that and the other. My brother said that we all knew it would happen. That is when I was told he is in prison for breaking and entering. I think the judge got tired of seeing him; he had his chances and the last Chance was 15 years suspended. I will not put on here what the charges were. I got a little angry when I was told that it happened a month ago. People are starting to understand when I say I do not feel like a family member.
  14. That is funny, my grand daughter always wanted me to make new clothes for her Barbie. I finally purchased her an American girlie 18 inch doll, much wiser to sew. I have been to Chicago a number of times, mostly to the meat market. I remember the one way street; to get to the place we had to go on a wrong way as it was the only way to get there. You had to creep across the bridge coming back out or you would top out your trailer. The guy I was instructing peeled the top of the trailer back to feet; thanks to the officer, he gave the guy a written warning and it could have been a lot worse, as we both could be sitting behind bars and not the kind you drink in. Thank you for for helping to bring to back so many good thoughts. I will be thinking about you and I send you my blessings.
  15. Hi Muffintop and Keevie, I was in a high pressure job; also I drove trucks in 48 states, Canada and a little of Mexico. I really enjoyed my job; there are not many jobs that while I was driving I got to enjoy seeing the sights. I got my first million mile award back in the early eighties. In 2007 I only needed about 5000 miles to get a second award when I got a hard hit in the head, but I think I had scleroderma a few years before that. I started having trouble pushing like I need to and most people can't believe I was getting sick. In 2007 I had a steele end of a securement strap hit me on the head. It fractured my skull and broke my neck and nose. I am alive from injuries from which I should have never lived, let alone driven back from Canada to South Dakota. The fatigue was getting at me and the joint pain; my doctors did a lot of tests and I have systemic diffuse scleroderma and a list of other things. I had to get a new driver's license and now I just have a plain old license . I feel for the job you do as it must be extremely difficult. I will keep you in my thoughts. I am now disabled; I am back to quilting and making dolls clothes. The one thing I have to share is find a good therapist it helps, also a good attorney to help with disability. Now I am through I send you my blessings.
  16. I had a head injury in 2007; 11 years later I still cannot remember or know for sure. I was in Canada when it happened and it left me with a dented head, a broken nose and the doctors said it was a closed head injury. I have trouble with short term memory. I sincerely hope I don't have Parkinson's disease, I have a long enough list of medical stuff! I will keep all in my heart and thoughts.
  17. Some days I just want to lie down and do nothing; other days I do what is in front of me. Not many people know why I moved 70 miles away from family, although I do have friends that know why I stay away from the family. When I go to family stuff I can't sleep or eat. What I am getting to is how family and emotions can do things to our health. I am in a lot of pain for a week before I go. I am working with my therapist and I am thinking I am going to go to mom's grave and ask her why she would say what she said to me before I was going into surgery. Some day I will let everyone know what she said. When emotions like these pop up, find someone to talk to or it will eat away at you, although there are many happy thoughts. I hope everyone lives for the happy days and can laugh until your stomach hurts and when sad tears are healing. So I send each one
  18. When I read this article it reminded of a course that I took in Lincoln Nebraska which was just a class for older adults. The instructor took us on a fascinating journey from caveman to today; there was a book, films and pictures on of his classes and guided imagery. It was fascinating and put together good though of course confused me. Is a race improving or is the human body is breaking down or improving? This topic could could go on and on, but I don't have a genius brain and I am happy the way I am now. I will leave this to those that have the ability to do so. Thank you.
  19. Thank you. We all have things we are afraid of; people do their best to hide them away. It is one of our most secret things that we can hold on to as our lives become out of control with scleroderma. 3 years ago my house was broken into in the middle of the night while I was peacefully dreaming. I thank the man upstairs as Tony and Mariaha woke me up. Whoever it was had left; I called 911 and it only took 45 minutes for the police to show up. That sparked another fear in my life, I check each door at least 3 times to make sure they are locked and I also leave a light or two on now. I have 2 fears and the darkness is the second. Oh, I put new locks on all the doors.
  20. My therapist asked me about my biggest fear and so have my doctors and family. In the last few years when I was in the hospital for surgery or other stuff and two times with my neck surgery I was supposed to be in overnight, but it wound up my getting a lung infection and staying in hospital for a little over a week. Not one family member came to visit and I had to find my own way home; luckily my aunt came and got me. Now that brings me to my worst fear - it is being in a nursing home or hospital dying alone with nobody there. Now that I told you mine, I want to hear others' fears. The reason I wrote this is that it is a safe place and if you don't talk about it, it will eat at what we have. I want to live to be 100 years young. I will be thinking about all the people that write it out.
  21. Before I was diagnosed with scleroderma I was one of those people that went to the internet and typed my symptoms in my Google search bar. I then just knew that I had at least 100 diseases and now I look back and laugh at it. Like most I found sites that had chats and I would write about all my symptoms and ask “do you think I have this?” When I went to my doctor she did a lot of blood tests and she sent me to a neurologist. He did a test that determined that I had neuropathy in both legs and arms. As a result of my blood tests, when I went to my appointment she gave me the diagnosis of scleroderma. At that point it hit me hard and then she sent me to my rheumatologist. They all said there was no cure; that was about 8 years ago.My aunt agreed we now know more than we ever wanted to know. My hope is that if you get that same illness do not panic; it is not a death sentence. Do your best to keep hope that some day the answer will come with a cure and if at times you need to cry, be my guest; it can be good to have a cleansing cry. My thoughts will go to every one.
  22. It has been a hard year things and finally settling down. Mariaha got her new collar; one of my doctors said I should get a halter collar as it would stop her pulling so hard and we are going to take her for a walk tomorrow. My toes socks are still working. I am going to try uploading pictures. Am I the only one that was diagnosed with scleroderma after a nerve stimulus test; it took 2 weeks? Mariaha does like her new collar, but now I have a new symptom my hands are losing the ridges; some people call it losing their fingerprints, which makes it hard to hold onto her leash. I was at one of the dollar stores and I found a pair that have a leather like palms; it gives me a better grip on her leash and other items. As of the last couple of weeks my sclero wants to take over, but I am too stubborn to sit down and give in. I have a new therapist; she seems ok for now but I explained that it is going to take time for me to trust anyone from that agency. My dad will be home in a few weeks and I am going to talk to him as my van is not going to last much longer. It has a lot of miles on it; my odometer just went past 100,000 thousand miles for the second time, so I hope I can raise the money. I have two wheel chair lifts; one was given to me, the other was put into my van through a waiver, so I do not have to be concerned about that, just the cost of putting it in the new van. I hope every one had a good day and found a lot of eggs. I had better quit for now; my night meds are making me sleepy, or in the UK good morning.
  23. Before I was diagnosed with scleroderma I was put on muscle relaxers; they thought I would be off of them once I healed from surgery. They help with restless leg syndrome, so I can sleep when my legs and arms would not relax; they did a nerve study which was NOT fun. That study showed that I have neuropathy in both legs and arms. I think that the man upstairs made antidepressants necessary for me, but it may not be anxiety which is what they thought I had. I have adult attention deficit disorder. Some day I will finish the book I have started; this is a journey we are on and most general practitioner doctors have never seen this illness or even know how to treat it. It was a little shocking when my rheumatologist had never seen me and he walked into the exam room, looked at me and said you definitely have scleroderma, but it took ten years to find out what I had. My thoughts are with you.
  24. I have the same thing, my doctor prescribed a stool softener with a laxative and it worked for me. As time went on it was increased and after that we had to decrease. I can’t say what I take on here, but I can in a private message, so let me know if you would like to hear what the medication is. Your mom should drink a lot of liquids and a balanced diet with fruit and proteins. I kept a list of what I ate and what caused me to get plugged up and what helped with that problem, which will help her doctor to see what is causing the problem. I will be thinking of you and your mother.
  25. I agree with you wholeheartedly. The reason I agree, when I was pregnant with my son my doctor came out to tell me it was humanly impossible, but I gave birth 6 months later to a health baby boy. What I am getting to is that you can get a second opinion; doctors see so many people, it is hard on them to see each person and when they think you are bothering them simply tell him it is your right. Walk out of his office with your head held high and with a smile on your face. I will keep you in my heart and thoughts.
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