Jump to content
Sclero Forums

quiltfairy

Members
  • Content Count

    233
  • Joined

  • Last visited

About quiltfairy

  • Rank
    Silver Member

Profile Information

  • Location
    mapleton , Iowa

Recent Profile Visitors

2,547 profile views
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. Thank you all; they are great ideas.
  7. Thank you on the good day. I made it 64 years today.
  8. 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.
  9. 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
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. Thanks everyone for the great support replies. I am never alone as I always have the man upstairs.
×
×
  • Create New...