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Everything posted by quiltfairy

  1. 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.
  2. 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.
  3. 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
  4. Her story gives me hope and tells me to never give up. Thank you.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. Support for partners

    I just wanted to pop in and say welcome to our forms and bless you.
  11. 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.
  12. 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
  13. as the sewing machine hums

    these are pictures of some of the things and quilts i have sewn
  14. 005x-ray of neck fusion c5-c6

    From the album as the sewing machine hums

    this is an x-ray of my neck fusion
  15. Good job :emoticons-yes: :terrific: :emoticons-line-dance: :emoticons-clap:
  16. Need diagnosis! Please share your experience.

    I would definitely see a sclero specialist and not worry about symptoms that you do not have at this time. Your positive test could also be a false positive. I know it is hard not to worry; for me when I start to worry I can imagine all sorts of symptoms and things. I go to my doctor and find that nothing is wrong so I gave up worrying, it just makes everything worse . Are you seeing a therapist? I do, it helps me to deal with all that is going on with my body. I have systemic scleroderma, but that is the most I can tell you; it took doctors about three years to come up with the diagnosis which is quite common as it is one of the most difficult diseases to diagnosis. You are in the right place for support and let us know as symptoms change and any reports from your doctor. I will be thinking of you.
  17. Mammograms and PAPs

    Normal mammogram, what is that? Have never had one, and due to the results I have had 4 non cancerous cysts removed. I have always had normal pap smears, but I have also had a lot of yeast infections. They just drive me crazy so I guess it is different for everybody. I have also had two Cysts removed from my ovaries and lost a ovary with the last cyst as it was the size of a navel orange. I seem to have developed what my doctor calls non cancerous cysts all over my body. They are not very large but the doctor is watching them and in the last few years I have started to develop a lot of moles. None of them cancerous but it is quite frustrating because everytime I go to my general practitioner she sees something else. I stopped worrying about cancer. If I still worried about it my head would be spinning constantly. I simply have things checked out and then if there is something I will worry then.
  18. Total Hip Replacement Surgery (THR).

    Hi Joelf, Sorry to hear about your surgery; I hope you heal fast. I am on the mend from my neck surgery and doing good. Yes I do agree with you about hospital food; they kept bringing me stuff I could not eat as I had a terrible sore throat. Some of the food was even unrecognizable, but I am glad it tasted better than it looked. So please keep healing up and if okay Happy Holidays.
  19. It must be very scary having a daughter so young diagnosed with scleroderma; I know when I found out my grandson had autism and he had the type whereby children often do not survive past the age of ten years old, so my thoughts are with him every day. I kind of have an understanding but he is only a grandson I don't :emoticons-group-hug: know what I would do if he were my son so my heart goes out to you and your daughter. Balloons for your daughter to cheer her and flowers for you for being a great mom.
  20. Is this scleroderma? Unsure

    I can testify to anxiety. I have had it for many years. Some times I just need to step back and relax. I also have meds to help with anxiety. I would sugest seeing your primary care doctor and also seeing a therapist. It took me getting a broken neck injury at work to find out I had Systemic Scleroderma. I think the day I found out what was going on I cried most of that day and the next thinking my life was coming to a end. Yes this is a incurable disease but I will also have a long life . With the anxiety I had chest pain, trouble breathing and at times it even effected my vision and ability to do my job. Now before I go into the total panic thing, can't breathe, heart beating too fast, I take my prn meds and relax. Then I realize it is just anxiety. If the issue continues after I take my meds I know it is time to call my general practitioner or Scleroderma Doctor. So I would suggest a call to your doctor and see a Scleroderma Specialist
  21. I had my neck surgery Monday. I am still in hospital with fever. Tonight it went up to 104, so I have ice packs on to cool me down. I hope they figure this out soon.
  22. Neck surgery, then high fever

    I am home, I am home. It feels so good to be home and be able to do what I want. Thank you all for thinking about me. :emoticons-line-dance: :emoticons-clap: :emoticons-thankyou: :happy-dance:
  23. Neck surgery, then high fever

    Thanks for the flowers they always make a person feel better.
  24. New Pulmonologist

    I hope things keep getting better for you