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Everything posted by barefut

  1. Hi Amelia, Craig's reply is awesome - I myself have used nitro cream and I take calcium channel blockers. My rheumatologist can't stress enough how important it is to keep your core body temp warm as well since a chill can send you into a Raynaud's spasm. I tried keeping my nail just long enough to protect my fingertip when I had my worst ulcer years ago. It helped because I could not stand any kind of slpint or bandage on it - too painful. I hope you find some true relief very soon!
  2. Hi Danielle, Please do try to get your husband in to see a specialist. Keeping you in my thoughts. Hang in there!
  3. Purr ~ So happy for you and I bet you are relieved!
  4. I've heard of people becoming addicted to medications but I have never heard of medications causing addictions! (or rather compulsive behaviors)
  5. Oh where oh where has my little Barb gone? Oh where oh where could she be? With her sharp wit and humor and even poems too Oh where oh where could she be...? Missing you Barbara Lowe! As you can see, we need your poems and stories of life on the farm and in the radio booth. Nobody wants to hear me try to make a rhyme! Wishing you all the best and hoping all is well with you and yours! (You can hear Barb on the radio from the UK at www.chorley.fm "The Morning Show with Babs" begins at 9am UK time) ~ Love ya lady!
  6. Fascinating story! Thank you for sharing it! My sleep med doctor called me at home after my appt with her and warned me about this side effect. So I am happy to learn more about that. Thank you so much Ladyhawke. I was apprehensive about taking Mirapex when it ws prescribed to me over a year ago. I only started taking it about 6 months ago after I could no longer stand my restless legs. Yesterday I promised my doctor that I would discontinue use if I started patronizing the Bingo halls.
  7. Hi Amberjolie, I never even noticed my face tightening in the beginning until I had something in my eye one day and I could not pull my lower eyelid down like I used to. I noticed "smoker's lips" first with my mouth. I have one deep wrinkle on my uper lip. The other sign I had was when I could not open my mouth wide enough for the dentist - and it was very fatiguing to keep my mouth open at all for him. But before all of this I experienced the sensation of cobwebs on my face. It drove me nuts! I was always reaching to pull imaginary webs off of my face. Bet I looked pretty funny. Anyway, these were the first signs and symptoms of my facial skin tightening. I thought it might be helpful for you to know. Take good care,
  8. Good grief! Long time no blog. Well since that last post, I have quit the Imruan and gone back on the Cellcept. It seems I was having increased pain and fatigue with the switch but now that I have been back on Cellcept, I don't feel much different anyway. :emoticon-bang-head: Also back up to 4mg on the prednisone. Truth be told, I function best at 10 mgs but doctor wants to keep me under 5. Had my upper endoscopy in August and I swear my gastrointerologist forgot to do the esophageal dilation. There was no improvement at all! Then I had a tarry stool on Thanksgiving so I thought I should mention it to him (even though it only happened that once). Doc wanted to look again because it could be a sign of an upper GI bleed. And since I had told him that the first dilation did nothing, he did it "again". THIS TIME it made a huge difference. I swear I can even breathe better! I hear some people must have this done yearly. I would say so worth it! Oh and no bleeding - I didn't think so. If there was, it had plenty of time to heal before he got around to lookikng in there. I made a mistake in my last blog entry. I meant to say that my Social Security Disability was denied due to lack of work credits. So I applied for Supplimental Security Income and was also denied. I have secured an attorney who works on contingency and will only take 25% of the back pay with a cap at $6,000. Worth it to me to let her fight my fight for me. Another holiday fast approaching and been trying to pace myself and pare down activities but I still feel myself going down for the count. Have not been sleeping well, the restless legs are tap dancing all night. Saw my sleep medicine doctor also this week (getting them all done at once!) She increased the Mirapex and suggested taking it earlier in the evening. Well, friends I am off to bed! I will try to entertain you more frequently with my lists of woes because I know you all are SO interested! So stay tuned for the exciting adventures of.... the mammogram! :(
  9. Vanessa - ahhh life's simple pleasures! Just wanted to let you all know I had my mammogram on Tuesday and all looked good. However, I am also having a sonogram to check for inflammatory breast cancer as I have had some tenderness and swelling and an unusual shaping to my left. Saw my family doctor and got some bloodwork done as well. That was also yesterday and I have not yet heard back from them so slow news is good news. Inflammatory breast cancer will not show up on a mammogram so a sonogram is the next step and then MRI. I'm sure its probably just sclero related tenderness but since I have been on Cellcept for nearly 5 years it puts me at risk. Better safe than sorry and inflammatory breast cancer is something you do want to catch early. So something to think about girls. Take good care all!
  10. Hi Kelsie, I've been feeling the same the past few days. I like Janey's idea of curling up with the cat for a good cry to get it all out of your system and relieve some stress. It really does help to release the floodgates. We need that from time to time. When I was first diagnosed I talked to a counsellor. She was not much help but it was good for me to at least have someone to talk to about everything who would not freak out or judge me. I was looking for a counsellor with a more proacative approach and she just sat and listened and wrote. Also be aware of depression and if you can't pull yourself out of the blues within 2 weeks, it's a good idea to talk to your doctor. Scleroderma gives us a lot to deal with emotionally and there is nothing wrong with getting help in the way of therapy or meds. Hang in there and know we are here for you!
  11. Vanessa, Your last post has me in tears. I am so sorry you have to have a mastectomy but it makes my heart happy to hear about all the wonderful people and support you have around you. Thanks for sharing your story. I have not had a mammogram in over 5 years. I am making my appointment on Monday. Best wishes and good thoughts coming your way! XX
  12. Hi Molly, Yes, my feet give me the same problems. I give them lots of rest, stretching, massage, hot soaks, I've even used menthol rub products on them. Also good, supportive shoes are a must! Hope you can find some significant relief soon. Hang in there and welcome to ISN!
  13. Vanessa, Keeping you in my thoughts!
  14. Sweet ~ I retreat to the bathroom too! And do the exact same thing! Ha-ha! It's either that or collapse in front of everybody. Shelley ~ I survived! The best preparation was yours and Jeannie's cleaning methods and a glass of wine! My sister, bless her heart, was a huge help and I was able to relax and visit with new freinds. Now, to get through one more....I have just decided to not put the pressure on myself to decorate the house, put up outside lights, cook from scratch...its the best gift I could give to myself even though I miss doing all those things.
  15. Welcome Nildasus, Please do speak to your doctor about it. I know it's hard but you must! Just wanted to let you know that you are not alone with this problem and you have come to the right place for help and support.
  16. Hi Erica, You have come to the right place! Welcome! :emoticon-hug:
  17. Hi Kamlesh! I also think you should see your doctor about it. I too have the leg pain/fatigue - feels like burning and cramping. Exercise gets harder for me not easier as you would think it would! It's like I am fatiguing my muscles instead of building strength and endurance. BUT I still gotta move so it's a struggle. Talk to your doctor - might be muscle inflammation? Hugs!
  18. Hi Sue! Glad you have joined us. You have come to the right place for top notch information and sincere, caring support. Have you seen your doctor for your back? If not you'd better get there girl! If so, what did he/she say?
  19. Hi Lizzie, I get that too - never knew it had a name. I also have recurring bouts of vertigo that can last anywhere from an hour to days and vary in intensity throughout the episode. Once had it so bad upon waking I crashed into the hall wall, slid down to the floor and that's where I stayed until my mother in law came to the rescue. Really weird! And not fun when it triggers vomiting too. I will have to look up labrynthitis to learn more. I'm sorry you are suffering with it. Dizziness and nausea are awful! My doctor advised over the counter motion sickness medicine, Meclizine. It helps me some. Hope you find relief soon!
  20. Ahhhh thanks so much everyone! My sister will be here in 2 1/2 hours and I am working on a combination of Shelley and Jeannie's methods this morning. Not gonna waste energy on a shower as I took one yesterday and my hair doesn't look too bad this morning. Gonna put the boys to work on the living room while I tackle the kitchen and bathroom but first I gotta have that cuppa! My weepies never did turn into a full blown cry yesterday. I hate it when I "feel like crying but the tears won't come" - that is in a song isn't it? Anyway, thank you all for your replies and support. I've enjoyed reading them this morning. You all have given me just what I needed to get through my day! Love love love to yous!
  21. Welcome Julien, Thanks for the reminder to be proactive and vocal regarding one of the most embarrassing and debilitating of symptoms. It is a hard one to talk about.
  22. Easier said than done this time of year. I feel over extended and I haven't really even done anything to speak of. Have had a lot of revolving door traffic though with 3 snow days this week and kids and friends coming and going. Just having to be "on" sometimes is exhausting enough. I had a wonderful Thanksgiving at a friend's home and will be having my sister and her hubby and 3 neighbors over tomorrow. Sis will help a lot but I stil have to clean the house before everyone comes. The boys do help but you know... So I don't know but for some reason I feel like crying today. Plenty to be thankful for, for sure! I guess I may just be feeling overwhelmed. Not just with holiday stuff but the same old same old sclero stuff wearing me down. I hope you all are finding ways to combat the blues and the blahs this time of year. I'd love to hear how you are coping.
  23. Hi Summer, Boy some days I feel like that too. I have all the restrooms in my town mapped out. The worst thing was when I was still working at the bank, in the mezzanine of a funky grocery store in a busy uptown location, our only restroom was also the public restroom in the hall! At least there was a mens and a womens and I never thought twice about using the mens room! Still, sometimes I had to wait. When I was not waiting, someone was waiting on me. It wasn't fun to come out of the mens room to a line of impatient men! One day though, a man came out of the women's room and I smiled. He says, "Hey, any port in a storm" cute, as we are a seaport town. I would always return to a line at my teller station and/or dirty looks from my customers and co workers. One of the big reasons I am no longer working. My heart goes out to you and I sure hope you find a solution that fits you very soon!
  24. Hi Pur, I take generic Mirapex for my RLS. No side effects whatsoever and it does a great job but takes about an hour to go to work. :emoticon-insomnia: My RLS started with the indescribable creeping crawly feeling that I needed to tighten my muscles to make it feel better and now has turned into uncontrollable jerks and involuntary movements. Before I went to meds I tried the soap thing - does not work - too bad :( Good luck to your cousin! Hope she finds relief soon but I wouldn't be afraid of the meds.
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