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Everything posted by quiltfairy

  1. quiltfairy

    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.
  2. quiltfairy

    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.
  3. quiltfairy

    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.
  4. quiltfairy

    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.
  5. quiltfairy

    Support for partners

    I just wanted to pop in and say welcome to our forms and bless you.
  6. quiltfairy

    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.
  7. quiltfairy

    as the sewing machine hums

    these are pictures of some of the things and quilts i have sewn
  8. quiltfairy

    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
  9. quiltfairy

    005x-ray of neck fusion c5-c6

    From the album: as the sewing machine hums

    this is an x-ray of my neck fusion
  10. Good job :emoticons-yes: :terrific: :emoticons-line-dance: :emoticons-clap:
  11. quiltfairy

    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.
  12. quiltfairy

    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.
  13. quiltfairy

    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.
  14. 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.
  15. quiltfairy

    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
  16. 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.
  17. quiltfairy

    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:
  18. quiltfairy

    Neck surgery, then high fever

    Thanks for the flowers they always make a person feel better.
  19. quiltfairy

    New Pulmonologist

    I hope things keep getting better for you
  20. quiltfairy

    US disability form question

    I am disabled and it took about 4 years to get it. A person usually has two denials, then a court hearing. I would suggest you call a disability attorney; they usually only charge if you receive the disability, otherwise they do not charge. Anyway, that is the way it works in most states; they take their percentage out of your settlement or back pay before you even get your first check. If you have any other questions about how it works let us know.
  21. I got a call from my sclero doctor today, all my blood tests were negative. No Hepatitis B or C. Lupus test was also negative, although my CT scan of my lungs was not so good. I have nodes in my lungs an they are not certain what they are but I do not seem to have any bad lung disease. The nodes are common in scleroderma. I also do not have the emphysema that the doctor in another town told me I have. He misread the CT but of course that happens in small towns and that is why I go to the city to see the specialist.
  22. quiltfairy

    New Pulmonologist

    I really hope your new doctor is the right fit for you; I know how frustrating it can be to get the right doctor. I am send the kitten to purr and bring comfort and the flowers to brighten your day. Bless you.
  23. quiltfairy

    Mostly good news from my sclero doctor today.

    Yes I can definitely agree with you . I almost forgot my neck surgery has been rescheduled for March 23rd; I will be glad to have that out of the way if no other emergencies happen with the family.
  24. I simply told my brother I would change places with him any day. I would love to be putting in my 40 hours a week and he could sit home on disability trying his best to cope with a disease like I have. He did not seem to want to do that.
  25. Hi My scleroderma has also been slow, all I can say about is that I am thankful for that. I do have swelling in my hands, my joints ache most of the time, but I am thankful because I can still do as I wish for my sewing projects. I also have diffuse, any way that is what my doctor said. I used to think that this was a death sentence, I worried about how the disease was progressing and if it did not follow the book my doctor, was getting a call. I have calmed down now, this is not a death sentence but it is a little uncomfortable. Only problem with it being slow is that my brother calls me an hypochondriac because he hears about the illness but he cannot see it. My hope above all else is that your scleroderma and everyone elses slows down to a crawl.