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Kathy D

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Everything posted by Kathy D

  1. Kathy D

    Janey Willis: ISN News Director

    Congrats Janey :)
  2. Kathy D

    How do you adjust to your diagnosis?

    Hi Hippichick, Nice to see you here but also sorry you were diagnosed. This is a great board :) KD
  3. Kathy D

    Beginning of sclero mouth?

    Hey doodlehead, I am noticing changes too. Dentist told me to do mouth opening excercises. I have two flat patches under my nostrils. A few years ago I noticed them but they are slowly growing. KD
  4. Kathy D


    He hopes I get better but said there are no guarantees. He said disability is a long drawn out process so I should start now. He also mentioned that if I do get it but start feeling better I can come off it and go back to work which made me feel better. Today he started me on Amlodipine for Raynaud's but warned me to stop taking it if I get dizzy since my BP is normal/low to begin with. He added DHEA, fish oil, and said we should consider Methotrexate but didn't want to shock my system with too many things at once. If I am still not improving next month he is referring me to Dr Fischer in Denver, as Dr Cohen is booked out 6 months (both doctors are listed on this site for expert care). Thanks for letting me share:)
  5. Where did your skin thickening start? I'm curious!
  6. My right ear hearing is not as good as my left ear. It feels a bit stuffy like it needs to pop but has not for 2 days now. I have light ringing in that ear on and off. I have had a runny nose now for several days and thought it was allergies, but never had a plugged ear for for 2 days straight with with allergies :) Any of you all experienced this? (my bp is normal :) ) Thanks for any input, KD
  7. Kathy D

    Hearing loss in one ear

    I canceled my doctors appt this morning. I was too nauseated to get cleaned up much less drive 40 minutes. Now I wonder if its the actually the flu. I really hope its the flu and it goes away, and that its not related to the increased plaquenil dosage. I dont think so though, have missed 2 nights of plaq lately due to vomitting. KD
  8. Kathy D

    Hearing loss in one ear

    Update, Dear husband just got home with ear wax removal kit. Poor guy, he had to hike over two steep slippery blocks in deep snow to get home!! Well, just clear clean liquid, unfortunately not wax. Will tell you how it goes on Tuesday at the doctors. KD
  9. Kathy D

    Hearing loss in one ear

    Thank you for all the kind replies. I have an appointment scheduled with my primary care physician on Tuesday, I'll be sure to let you know what he says. Cheryle, I hope its just allergies for you :) Not the case here though, we aren't green yet in Colorado, getting 2 feet of snow tonight! KD
  10. Kathy D

    Happy Dance time

    Fantastic Margaret! I am so glad he's feeling better! Where do you buy the Vitamin D at? Is it a special kind? As of Tuesday my rheumatologist took me off my organic super duper multivitamins because they said "Immune Support" on them. I bought a different kind from the supermarket and was interested to see the supermarket brand has over double the amount of D than the previous. KD
  11. Kathy D

    Hello - I'm new, with CREST

    Hi Winter, I am sorry you are diagnosed, but glad you are here, there are great people here! I do not have CREST, but my raynauds showed up a few months before the fatigue and fever started. Then with in another few months my joints got angry. I'm sorry I dont have answers to your other questions but wanted to welcome you. KD
  12. Kathy D

    Holding my breath

    I hope I am not experiencing a placebo effect:), I have only been on it for just under a month now. I think it is starting to work on my fatigue! I have debilitating fatigue and have been pretty much useless for months, but now I am getting things done in the morning. I still crash in the early afternoon, but those few hours have allowed me to regain some control of my house and get some work done that requires focused thinking. I have been able to go to the grocery store and actually buy things instead of barely making back to my car with a few bare essentials. I actually not only make it through showering lately but also can fix my hair and put on makeup. Though I have Raynaud's most hours of the day, my fingers are just blue, not the deep purple/black they used to be and my ulcers are finally closed up. It is really gratifying to see my plants greening up after months of neglect. I hope I am correct that the plaquenil is making these positive changes, let me know if you think it is wishful thinking. KD
  13. Kathy D

    New to Sclero (CREST)

    Hi Mona, nice to meet you, I understand not wanting to be diagnosed but also know the relief of finding out what is wrong with me. Dear Husband and I were relieved that I was diagnosed so quickly, we now had a name for what my husband coined as "his wife has checked out of life". I had prepared for a diagnosis of RA or Lupus, so I was really caught off guard when the blood tests came back with a high Scl-70 and negative lupus subsets. Deep down inside I did not reveal to dear husband that I had viewed a picture of scleroderma finger ulcers that were uncannily similar to what I had, just closed the computer screen like I could hide from it. So I was torn, glad to start treatment but sad it was all real. But now I have started treatment so you should definitely find out too. Take good care and I'm glad you are here. KD
  14. Kathy D

    plaquenil and skin reaction

    Hi Omaeva, I'm not in the medical field, but here are my experiences. I have a couple of possibilities for you. Have you changed laundry detergent or dryer sheets or got new carpet or anything? Believe or not, some dryer sheets both irritate my skin and the scent makes me sick to my stomach though other brands don't...... I also recently took a round of antibiotics that gave me a rash though I never have had one before and have taken many antibiotics over my lifetime. I developed little red dots all over my back, then it spread to my stomach and bust-line. They were itchy like dry skin. They went away after I was done with the prescription. Also, I have felt "flu-ish" on and off for a few years even before I realized anything was wrong; I've read that many autoimmune disorders can make you feel that way. Most importantly, please go to an urgent care facility if needed, don't fool around with bad symptoms, you need to protect yourself in case one of your organs is acting up:) Take good care! KD
  15. I was under the impression that flares come and go, is that correct? If so, why have I had symptoms for so many months? Is this how I will always feel with this disease? I started having severe fatigue a few years ago, began needing 10 +/- hours of sleep per night. Last November, added chronic puffy hands and eyelids (and feet sometimes). December brought more, now finger ulcers and sore, swollen, and snap crackle popping joints. I am now on medications, prednisone, Plaquenil, NSAIDs, and a proton pump inhibitor. The proton pump inhibitor works wonders, but I don't feel much better otherwise. Thank you for any input or suggestions :) KD
  16. Kathy D

    Females Only

    I have struggled with this device since I got it in 2006, one infection after another on top of heavy painful periods. Now that I have sclero, I don't have the energy to deal with cramps and bleeding every day (yes, almost every day of the month). I have more inflammation from sclero now so I was thinking any inflammation I can remove would be a good idea, what do you think? Of course I have to add that I cannot tolerate hormone based birth control, sorry. Thank you for any input or experiences, Take Good Care! KD
  17. Morning AKA, I do not have children but before my last miscarriage I started losing a lot of hair, in the shower, on my car seat, on my bed pillow, you name it. The doctor said it was my body adjusting to the pregnancy, and yes, probably stress too as I was aware my numbers were falling. All my hair has since come back. Let us know! KD
  18. Kathy D

    What ability would you most want to keep?

    Hands down, easy decision for me, I want my energy back :) I am pretty much in your shoes too Janet. KD
  19. Kathy D

    Pain and exercise

    Hi Margaret, Sorry to hear that with Gareth. I had costochronditis a few weeks ago. It was crushing pain in the center of my chest, turns out it was inflammation of cartilege on my ribs/sternum. I wonder if he could have some inflammation that only shows up when he exersizes? Let us know how it turns out. KD
  20. Kathy D

    Where did your skin thickening start?

    Thank you everybody for your kind responses! I am sorry for the challenges so many of us are facing but honored to be among such a strong supportive group :) Since I wrote the original post, I fear I may have started skin thickening. I have two flat patches just under my nostrils and a white patch between two knuckles that had gone from a dot a few weeks ago to about 1cm square now. My cuticles are pretty swollen too, some with red blood vessels just under the skin. Will bring this up with the rheumatologist during my appointment next week but hoping for input from you. Also, have any of you been prescribed 200mg/day plaquenil instead of 400 mg per day? Curious about that, though I believe it has helped my severe fatigue some. I pretty much crash after 1-3 pm but I am getting SO much more done in the mornings, darling hubby is thrilled to have clean clothes and dishes again and I am slowly regaining control of my messy house!! The plaquenil has not helped the sausage fingers unless they could have been worse than they are now which is possible. I slather my hands in lotion and bag balm but the red/purple coloring persists on my knuckles, and lower 1/2 of fingers and thumb. Hugs to all and thank you for all support! Take Good Care! KD
  21. I have been using a larger pearl ring to at least have my wedding ring finger adorned, but am missing the set dear husband picked out for me almost 20 years ago. thanks, KD
  22. Kathy D

    Acne from Prednisone?

    I struggled with acne most of my life til my 30's, it has been a nice 8 years of no acne. I am now getting deep angry cysts again as well as embarressing pimples on my face. Thinking I will start using benzoil peroxide and salacylic acid face products again, will this help (and could I make the flat patches on my upper lip that I think may be skin thickening) worse? I should add that my stress level besides the recent sclero diagnosis is fortunately very low :) Thanks for any ideas and take good care! KD
  23. Kathy D

    New to Forum

    Hi Kaurie, Nice to meet you though sorry you are here too. I also drove myself insane researching on the internet, I was warned against all the surfing by my hubby, father, and rheumatologist, but could not sit by. It's been about a month now since my positive SCL-70 test and I do not have the desire to surf for sclero anymore. The further testing ordered for me was to evaluate my organs, lungs, heart, kidney and liver. Glad you are here, I have found so much support. :) KD
  24. Rachel, I am so sorry for you and your mom. My father had a hard time eating after a colostomy and with the doctors blessing, I made him his favorite brownies in a "mini muffin cake pan" and added chocolate instant breakfast mixes in the brownies. He actually would eat those and they had some extra vitamins minerals and protein that normal brownies would not, and the mini muffin pan I think helped him not each too much of sugar only. You and mum are in my thoughts, KD
  25. Laid down on the couch at 7 pm, my husband put me to bed at 7:30, and I slept sound till 6:30 am. Thank goodness for prednisone and NSAIDS as my joints don't wake me up anymore, just one potty break and minor readjustments for the puppy. :) Is this normal?