truman

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Everything posted by truman

  1. I have the same problem with shoes as well. Closed shoes cause my feet to become numb as does wearing socks. The slightest restriction of my feet and hands causes numbness. I tried buying shoes 1/2 size larger but got the blisters. I found if I bought shoes in my size, but WIDE, it would work for most of the day. Most of the time, I tried to get away with open toed shoes, but the numbness caused by the office A/C was too much. As for gloves for the hands, the restriction is too much. If really necessary, I'll use mittens but the thumb part will constantly be numb from the pressure of the material. If the office was extremely cold, maybe one or two finger tips would turn purple. In a pinch, I would cut off the finger tips of an old pair of gloves and wear them on the affected fingers so I could type without interference. I didn't care how silly it looked or the questions, it helped me get through the day. Funny how much I don't care how silly I may appear anymore; guess it comes with the territory. :P
  2. Nan: I know when I'm overdoing it; I could feel from the neck to the middle of the back begin to arch and ache. That's the time I'll sit and take a breather from whatever I'm doing. I had the washer/dryer moved from the basement to the kitchen (thank goodness I have a huge kitchen). Now I realize I should have done it years ago, just for the convenience from when the kids were little and there was so much laundry! I also keep a counter stool in the kitchen to sit on when cooking at the stove for long periods or just meal prep in general at the counter tops. I also had the plumber put an automatic water feed on the boiler so no more going up and down the stairs to check the water level. Still waiting for my son to come over to move the modem and router upstairs for the computer so I don't have to venture down the steps to reset them after a good storm.
  3. When I get fatigued, I just lay down and take a nap. Since my amputation and hospitalization, I becoming more and more active and I think that contributes to the tiredness. If a nap is 1 hour or 4 hours, done deal and I'm up like a bunny. Could be up at 3 AM, but so what; thank goodness I don't have to go to work!
  4. Sweet: I always went to the dentist every three months because of gum disease. Since the diagnosis and illnesses, it's been quite some time. I had to go about a month ago due to a cavity. Amazing, the minute Dr. Seu touched my arm, he said do you have Scleroderma? A dentist knowing, but the doctors don't. I explained I have CREST and he said now he understands all the dental and gum problems I was having throughout the years. Evidently, they are connected. Still can't get over how astute he was that day.
  5. So true, Smurfette, so true. Basically it is what it is and living each day as it comes. Change what we can change, get on with our lives and enjoy, enjoy, enjoy.
  6. Shari: There are really not many Sclero experts anywhere. What I have found are doctors in various fields who are willing to listen and learn. I've had two doctors who knew basically nothing about the disease ask me to explain it and in turn they informed their staff to get on the internet and learn as much as possible about CREST and Scleroderma. Over the months with these doctors I have found them to be more knowledgeable; I guess because they now have a "live specimen" to work with. Nothing like hands on training. I'm comfortable with it, because I am my own advocate, I know my body and the doctors understand that and would prefer to hear as opposed to guess when it comes to me. I do find, for some reason, that nurses are more aware of the condition. I still find it amusing when a new nurse comes on the scene and the doctor asks if I would please explain the meaning of the letters CREST. :rolleyes:
  7. Is the "Fast Reply" a newly added alternative? Don't remember seeing that before.
  8. Hope all is well Jen. How's the little sweetie today? With you and/or Mom, who could want for more?
  9. Karen: I'm trying to post a new picture for an avatar but although they are the right size, it doesn't upload it to the Sclero forum. Spent two hours trying to figure it out last night and some time this morning. Have to keep trying. I very computer oriented, so I don't know what the problem is.
  10. Karen: He mentioned the Telangiectasias and then the Skin Tightening as first and second.
  11. Sam: Believe it or not, I was on Lyrica and pain medication and neither helped with pain. The tried and true one for me was simply an NSAID. Generally two worked, but if not the doctor said to take three. Ask your doctor if you can take one of the NSAIDs.
  12. JJ: We at work, used to call the hot flashes "summer moments" .
  13. Congrats Jensue ! Start enjoying the freedom. If you get bored, slap yourself and start enjoying again :) .
  14. Hi Princess: I asked my rheumatologist yesterday and he says it seems to skip a generation. He also said if predisposed as with other autoimmune illnesses such as arthritis, lupus, etc., it would be more likely that individual would get the disease. He also reiterated what I've been reading here about a remission period. He said if I hang in there, it's usually between the 3-5 year mark and things slowly reverse as in skin softening again.
  15. Peggy: I'm always here for you, pick away. Send a PM for my personal email address if you wish. We're all in it together. They say two heads are better than one; look how many heads we have here on this forum! :)
  16. That's funny Karen; 5:00 PM same way through the arm holes so I still have the shirt on for unexpected guests.
  17. Stress also plays as a factor.
  18. Jen: It could be the heat. Ollie all of a sudden gets diahrrea from the dog food he's been eating since February. If I give him hard boiled eggs and rice, he's fine but when I try the food again, look out :( . I haven't taken him back to the vet because other than that, he's fine and himself. If Sadie's fine in every other way, I wouldn't worry. Generally I heard it's cats who are ill if they refuse to eat. You could also call the vet and just ask them over the phone or give Sadie a hard boiled egg and see if she gobbles it up. Let me know how you make out.
  19. Smurfette: "I try to be informed but not focus on my disease as a vocation. " That should be the top oath of this disease; the very stand alone statement. It's funny how one moves on to different jobs, careers and even marriages and some of those choices can be the worst decisions of one's life. I have, through some of those worst choices, come away with new people and friends in my life I otherwise would never have met in a lifetime! Just to have connected with the wonderful people here, and dear Sadie/Suzi. Sometimes, things happen for a reason.
  20. Peggy: I'm so sorry it was all so hard on you. I read the posts of you and Sweet and I think this is why I never remarried. Believe me, I don't want to add to the fire, but I would never really feel comfortable not knowing whether or not that my spouse would secretly resent me. In turn, I do have it with my sons. After a wonderful reunion due to my hospital stay, they have again shut me out of their lives. No response to emails or phone calls; so you see I have it in others ways, but they make it more blatant. Sometimes I think thats a little better, as then I can move on. The only difficult part is not knowing why they are doing it, they just "shut" me off like I don't exist. Throughout the years, I have seen a counselor on and off during very trying periods such as divorce, single motherhood, diagnosis of this disease and my sons' alienation and found these sessions very comforting. Maybe you or you and your husband could attend them as well which would set your mind at ease as to his feelings of the situation. Maybe he needs to vent his feelings of this disease as well to put a calmness over his fears and anger. Keep us posted and remember, we're always thinking about you...........
  21. Peggy: I'm so sorry you're feeling so badly today, both physically and emotionally. Let this just be a "down" day, and not a normal day. I gave up crying months ago, when I realized I was crying alone. No matter how weak we feel, we need to tie them laces and pull up those boot straps and become the masters of our destiny to any level or degree we can. You can't continually focus on what might be, because it is NOT now. Constantly waiting for the other shoe to drop is like wishing your years away......please don't do that to yourself. Okay, you did it all at the Lake this weekend. Now you know better. Next get together, pick up salads and lunch meats or half trays of your favorite hot foods and who cares if the carpet needs vacuuming? Not me, that's for sure. Let them walk in my shoes and tell me the carpet matters <_< . As far as income, I'm alone and with disability, by income was slashed by 60%. I always considered myself "low maintenance" anyway, so I'll make do; what choice do I have? If I can't, I'll find a way. You can and will too; just takes time to get over each little hump that comes your way. Sometimes those humps are never ending, but when you look back, you've gotten over quite a few, haven't you :) ? We never give ourselves credit for the triumphs we have overcome, but start patting yourself on the back once in a while ;) .
  22. Smurfette: You could have read my mind; thank you for expressing the emotional impact so accurately.
  23. Donna: Wishing for a significant other whether in sickness or health is a natural, someone to spend the rest of your life with and share ideas, events, etc. After almost 20 years of friendship with someone, he was there when it all fell apart but since my hospitalization in June, has distanced himself and we see each other here and there. I think it was just all too much on him; the responsibility, the caring, fear. To be honest, I never told him about this disease until Nov. 07 and at that, I kept it brief and never referred to it by name. Although I am nicely recovering, I think it just scared him too much.
  24. Barbara: Love your sense of humor . Mine have stayed too but as I believe Sheryl posted to me, they add character ;) .
  25. Sheryl: My heart is so heavy as I read your message this evening, the tears keep streaming down. What impressed me so much about Suzi was her upbeat attitude whether it be her situation or situations of all of us on this forum. Her urge to be there for us up until the end instead of wallowing in despair was incomprehenable to me, but her belief in her faith forged her to be there every step she could. I was new here, she reached out and befriended me immediately. She formed what she called our support team which included KarenLee and myself. We would pass emails between the three of us, if for anything, to at least express if the sun is shining that day. She loved when her parents would open her windows. The window is now open and she is free. Bless you Suzie.........I love you. Please hug and kiss Truman and Zachary for me. They'll always be your companions. Linda