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Everything posted by quiltfairy

  1. Yes that is helpful. I think that and part of it is the weather pattern keeps changing around here. One day it is warm, the next day it is cold and rainy. My body never hurt like this with the weather, although when I was not ill and having so many symptoms I was a semi truck driver and went in and out of fronts from one minute to the next the doctor decided I shouldn't drive trucks so they hijacked my CDL licence. I can still drive a car, but I only do that in town. Bless you each.
  2. My fingers have started to peel around my finger tips; they are not sore or itchy, but they feel a little funny. It is hard to explain, although at times I get a tingling or pin pricking on them. I hope some one can let me know what is causing this. Thanks.
  3. One site I get good information on most medical issues is WebMD. It has given me the best information on most things medical. Good luck with your search and it has photos of conditions.
  4. Hi, everyone that has just joined the Forums. To tell a few of you what I have gone through with my disease. It started in Canada after unloading a load of rails and throwing straps over the hay to secure the load. I was in the right place at the wrong time and I fractured my skull, broke my nose and neck. The doctors think that might have caused the beginning of the scleroderma and there are a lot of theories that cause scleroderma. The first test was on my legs, when that was done the doctors took 6 tubes of blood. The labs here got a partial and the blood was then sent to the Mayo Clinic. My doctor called me to come to the clinic and she told me I had scleroderma. At that point she set me up with a rheumatologist and when I walked into his office he said I definitely had scleroderma. I have given up most of my driving in town only. I have to see my rheumatologist on Wednesday; I hate going to see him as it's 2 hours there and 2 hours home. My son has moved in with me to help; he is doing a great job. My last thing I have to say is I think I am glowing in the dark and I wish someone would answer that awful ringing in my ears. May each of you be blessed.
  5. I got a a mortar and pestle; I found it on my other favorite web address Amazon. I am a prime member, they had several designs. It is food safety so it should work good and it also has a life time warranty.
  6. Like you I never fell much until my head injury. When I was still driving trucks I grabbed the grab bar that is on the side of the outside of the door; it is another one of the things that is there for driver safety. I grabbed it, then missed the bottom step. Believe me, that can go around the trucking world for a long time then. I hope you all have a great week, what is left of it.
  7. I would much rather be working. I was a professional truck driver going down the road, not much to worry about. I drove a flat bed truck and I was known for my friendly demeanor and to never give up. I owned my truck, but I started with not being able to load my truck, then I got a head injury and things went down from there. Because of the scleroderma I lost my truck and a lot of money, so if you are reading this it gives you an idea of the cost. Now I sit and watch tv and I do what I can and if others don't like it they can go jump in a lake. I need help with most everything I do.The pain at times is almost unbearable and I would not wish scleroderma on my worst enemy - oops, my body is my worst enemy! And yet I am mostly happy; my son does the driving because I don't feel safe. I hope you find the answer you are looking for.
  8. I think I have the best son in the world. We were out trimming weeds from around the air conditioning unit. I was pulling the little ones that came out easily and I really cannot tell any one what happened. Luckily my head hit the lawn instead of the sidewalk; I missed the sidewalk by inches. My son got me into the house and sat with me until he was sure I did not have a concussion. I'm so thankful that I had him. I send you all a blessing. I would love to hear stories of some one or thing that touched your heart. Oh, I am ok and headed to bed.
  9. Thank you all; they are great ideas.
  10. Thank you on the good day. I made it 64 years today.
  11. I’m always wanting to go to any one of my doctors and hear “you are doing great, we don't need to do anymore tests or change your medications”. But that is only a dream. I saw my gastroenterologist Monday; my choking is getting worse, the part that opens and closes is getting smaller and the part in my throat between c4-c5 is getting harder. The funny thing about this is, it is not the little uncoated pills, which go down better than the coated capsules. An appointment is being made to see a speech therapist. I was also told I can open the capsule and crush the others, except the pain meds and the one I can not say, let alone spell! A good friend tells me to always remember to say it is what it is. My son is now living with me; it is so nice to have support in the home. I wi!I be keeping my thoughts about everyone that has scleroderma. Quiltfairy.
  12. I was asked if I wanted to be part of the CBD study; I thought about it for about 2 seconds, now 3 years later I know I made the right choice. If I had not, my son would have not got a place to live after getting out of prison. I want to get the best chance to get a break and live a good head start at getting a normal life. Thank you for putting this on. Quiltfairy
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. Thanks everyone for the great support replies. I am never alone as I always have the man upstairs.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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
  24. 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.
  25. 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.
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