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Kathy D

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Everything posted by Kathy D

  1. What an excellent tool this will offer those who need it. Very kind.
  2. I am sorry to hear of her struggles Blue. Depression is common in autoimmune diseases, both those that have them and those that care for them. Get her psychological help please, and it might be a good idea for you too. Make some phone calls and see a professional, good advice for all:)
  3. Hi Ladies, I still have Graves, apparently its' mild enough I will not be treated at this time. Enough that I still get trembles and sweat too much and get twitches and have noticeable muscle loss (likely in conjunction with the new more sedentary lifestyle now) and sometimes my heart beats fast........Silver lining would be not having to take another med again (Methimazol), and marriage is back online at this time too:)
  4. Slow and steady but things are improving here :) It's bitter sweet seeing miocean's post on my thread. Rest In Peace Sclero Friend.
  5. Hi, I had many warts removed as a child, dear sister and dear mother shamed me terribly about them (roll eyes). Over 30 years later I now have circled flat patches appearing that I am guessing are warts too. I am too taxed to keep up with a child and other doctor appts/ daily tasks so the "warts" if they are warts will wait. Not sure about the relationship but my lady visits show negative on HPV. I'd love to hear more info on this for sure!
  6. Thanks for the great big warm hug!! It should happen soon.
  7. Bummer, blood work from last week shows I am hyperthyroid again. They will run additional bloodwork and we will take it from there. My eyes have been a mess for a couple years or so now (blamed that on whatever autoimmune coming at, was wondering about sjogrens), and the last 6-9 months I have had a bigger appetite yet when I get weighed at doctors appointments I have lost about 10 lbs in the last 3 months. Woo Hoo any kind of bread has tasted fantastic!! I guess I need to buy a new battery for my scale to weigh myself at home LOL (roll eyes). Bummer that my face is tightening/skin stretching but I have a double chin despite a low BMI. Bummer the waistlines in my pants are now tighter though my arms and legs are skinnier. I noticed muscle loss in my arms and especially in my legs and rear end. Initially I thought it was from becoming more sedentary the last 5 years, now it all makes sense. I am hoping for the nuclear pill to kill at least part of it, but not all of it. Being hypothyroid and taking the replacement meds does not sound fun either. Fatigue has pretty much ruined my life and I fear adding more fatigue from going hypothyroid. Its so hard to explain stuff to people, some think I am anorexic when they see my legs, and others assume I'm overweight if they see me from the neck up. Nope, neither, just as normal as I can be with scleroderma. The one positive thing I can share is that my home is on its way to being in order now... I've been using the marital stress and bonus thyroid energy to get the house in order.
  8. Sorry to report things have not improved despite individual counseling and joint counseling. He is full of hate and anger. Sad but true.
  9. How do you feel about caregiver pacts? Where a caregiver makes arrangements for after the ill one dies?
  10. I had what I might call a temporary reversal. I gave birth to my first child at age 40. I felt better than I had my entire life including childhood during my pregnancy and for a year after. I was diagnosed with JRA as a child and it supposedly "mysteriously" went away. Nope, I just became better at thinking all little girls feel the same as I do, and or masking the joint pain and fatigue as it waxed/waned, I wanted to be what my parents expected me to be.... That pregnancy "remission/reversal" slowly came to an end about a year after I gave birth. My blood tests for inflammation and a few other blood tests that were usually irregular were in the normal range during and for awhile after pregnancy, very nice! I am thrilled to have a child we hoped for after 17 years of marriage, but sclero wise I am back in the same boat now as I was pre-pregnancy and a bit worse too. I have found and made contact with distant relatives from the family line my autoimmune gene originated from. One relative told me her grandmother and mother (born 1900's and 1920's) both were thrilled to be pregnant as much as possible because they felt so much better while pregnant. I can totally understand that now. I was too old to conceive again, and not sure my husband could take on another baby as he both works too hard to provide for us and is caregiver to both of us on top of that. We would have done it if circumstances were different and I could have conceived again.
  11. I am enthralled with this video. I cannot believe I have not seen it before tonight as I have scoured every detail of your, or this site for years. I would love to share it. May I ask for permission? If yes, how do I do that? Thank you. I also plan on printing Sylvias husband poem in a Father's Day card for my husband.
  12. Hi Jeremy, I had a laser treatment on my face, I am sorry I do not remember the name/method, but it was pretty deep laser treatment, I had skin falling off for awhile.... I was instructed to use strong sunscreen constantly for a few weeks (and after), but unfortunately we were evacuated from our home for a natural disaster and that did not happen. I spent more time in strong sun in the next two weeks after the deep laser treatment with lesser than strong sunscreen that was quickly sweated off from prolonged times in the heat and direct sun than I had in the last several years combined, it was a chaotic period. I cannot say if it was lack of sunscreen, or my scleroderma progressed, or other reasons, but mine are far worse now. I asked my sclero specialist before I had it done, he said they could come back worse, guess he was right, they did. A year or two later I had different one done that I think was called yagi. Looked great for awhile, a couple of years later I have new ones and I am in the same boat as before without sun exposure and I used strong sunscreen. I use a particular makeup formulated for rosacia, my husband has borrowed this in the past for publication pictures or critical business meetings for a finished look. It works great. Not that I wear makeup much anymore, but for first impressions it could give you confidence. Send me a message for the brand if you are interested. Good luck and let us know what you decide
  13. This situation has taken a 180* turn. My diagnosis all those years ago has taken a terrible toll on him, he has slowly descended into depression over the last 10 years and now hit rock bottom . I am ashamed I did not recognize how much pain my scleroderma has caused him, and that I shared in publicly. Instead of asking this thread be deleted, this could be helpful for other caregivers and maybe help those chronically ill avoid the mistakes I made so I will sheepishly share this. He began counseling and was prescribed anti-depressants a month ago. Unfortunately he had a bad reaction and it pushed him over the edge. Being the kind loving man he is, he has a very strong "provider and protector" instinct. He sadly does not have a support system and was desperate for some comfort and relief. I was his main and strongest support and best friend for his entire adult life, but his "protector" instinct took over and though he thought he was helping me by not sharing his pain, he forfeited the main part of his support system, me. He is now waiting for the initial antidepressant to leave his system (per doctors orders) to start a different one next week We have had some very good conversations over the last few days, so honest they are almost raw. Very constructive, but also revealing that he is so low right now that his perception of reality is skewed, which could explain why he contacted a platonic friend from his past. Turns out they never even dated..... I have a feeling our love and marriage will be stronger after he gets through this, if he does need to move on after this, I love and care for him so deeply I will do everything I can to help him be whole and happy again. He is a tremendous man that deserves it. He does not deserve to have the love of his life ill with an uncurable disease. I apologize for worrying anyone, hang in there for better times are coming!
  14. I am moving back to the city we used to live in.
  15. He's in love with another woman. Hmm.
  16. It is very possible that you test positive for SCL-70 but do not and will not develop Scleroderma. Antibody testing can be tricky and show results that are not true, such as sine and vice versa. Hang in there, you have been in a stressful situation with your grandfather, I have high hopes the test is an anomaly :)
  17. I have a relative who was prescribed this for fibromyalgia, it is helping her.
  18. Hang in there Dan! It takes around 2 weeks for the antibodies tests to come back with results.
  19. I have diffuse sclero and had a miracle pregnancy (infertile), I had to stop a couple medications and I was under the care of a perinatal rheumatologist along with all the other specialists, check ups every two weeks the entire pregnancy. I did not have motility challenges.
  20. I have a really tough time with being either hot or cold constantly! Dear husband lets me keep the house VERY warm, not sure how he puts up with it but he wears shorts and tank tops in here in the dead of winter LOLOL! Lil one wears summer clothes all year round too. I have learned to LOVE zip up hoodie jackets, I take them off during hot clothes soaking sweats, then put them back on when I am freezing from my damp skin/clothes. I even wear them backwards (or from the front) sometimes when Raynauds is bad and hands and arms are cold but my core body (torso) is hot. I used to have electric heated throws near all my sitting places, they are now in the closet since having a lil one I am up and down every 10 seconds. I still use disposable heat packs in my shoes, and change my shoes and socks often because I get hot, socks get damp from sweat, then they are freezing, I switch them all day. Of all the things I can complain about, the body odor from sweating bothers me the most, I don't have it in me to shower more than every few days and it adds up over those few days. I see my rheumatologist in late May (I had a mid April appt but had to move it because of a snowstorm), I will ask about the more intense hot flashes:)
  21. Very sorry you have two ailing children. Curious if the rare diseases are autoimmune?
  22. I have not heard of SCL-40 before, what is it?
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