martinisweetie7

Members
  • Content count

    16
  • Joined

  • Last visited

Everything posted by martinisweetie7

  1. Hey All! It's been a while since I've posted. I kinda fell into a deep depression over the past few weeks. Another birthday has passed for me. I thought that would bring my spirits up, but no. I've been fighting off a lot of pain lately. I don't know if it's the horrible weather here on the east coast, but something has to turn around soon. I feel like my body is starting to not respond to my meds. Still takes an hour at least to get out of bed in the morning. I'm hoping that I can get enough energy tomorrow to tackle cleaning out my closet. I go back and see the sclero specialist in NYC in May. That can't come soon enough. I just didn't think that almost 30 would be so painful for me. Hope everyone is having a better week! I'm trying to keep my spirits high. Gotta keep on pushin'! ~ Jo
  2. Hi Everyone! I've always wanted to learn how to knit. I absolutely adore chunky scarfs and knitted mittens. Would certainly save money by making them myself. I have a reputation in work for being the "scarf lady" since I have so many Maybe once this cold subsides here in NJ, and the swelling in my hands goes down, I can start on this one. Now if only I knew someone who could teach me... Hugs for everyone !!:emoticon-hug: ~ Jo
  3. Wow, I did not know this at all. I was just placed on Plaquenil, and all I was told was that it would not interfere with any of my other medications. The doctor never said anything about it's effectiveness being reduced by others. Thank you very much for that informative tidbit! ~ Jo
  4. Hi Jeannie! I hope you feel better soon!! Seems we all run out of spoons faster than we would like sometimes. It's only a matter of time before you have a huge handful again! The cold weather doesn't help either. We just had an ice storm in NJ today, and the cold is wreaking havoc on my body. Margaritas sound great! I guess I'll go clean my car off for some crushed ice :D Warm hugs!! :emoticon-hug: ~ Jo
  5. Hello Everyone! :bye: I was wondering if anyone has tried re-usable hand warmers. I have found some that require boiling once or twice a day. I have also seen some that are battery operated and re-chargeable. Has anyone tried these? I'm considering it since the disposable ones tend to get expensive. Thanks for the input! ~ J
  6. Hi Patty! I'm so sorry you're feeling down today :mellow: Using this board as somewhere to go to let it all out has been so incredibly helpful to me, and I think it's a good place for us to come when we feel a little down. We all know what its like to barely have the energy to blink, let alone worry about the people we love. But better out than in, I say! ;) I hope that your daughter is feeling better, and that you get great news from the doctor about your scan! I'm so jealous you're in Miami! I'm freezing my behind off here is Jersey! Feel better! ~ J
  7. Thanks for the input everyone! I have looked at all of those options, and all the input has helped me in my decision!! Warm hands, here I come!!! B) B) B) ~ J
  8. Hi Queenie, I'm so sorry you were having a bad time. I frequently go through those kind of days too. It's like you want so badly to ask for help, but those of us who are so used to being the helpers often find it difficult, especially to people who may not fully understand what we are going through. I agree that the spoon theory is a great way to help people understand the difficulties surrounding having a chronic condition. I have emailed it to many of my friends. Some get it, and some don't. It's the ones that get it are the ones to surround yourself with! You need to surround yourself with as much positivity as you can on these kinds of days. I'm so happy you found this forum. I have to say this has been a really great place for me to come and share things with people who understand the bad days, as well as the good. We are all here for you! I hope you are feeling better today.. :emoticon-hug: ~ J
  9. Hey Everyone, I guess I'm kinda venting right now. I talked to my therapist about this today, but I feel like I'll get the most help here... Has anyone had an experience where someone you trusted and thought was supporting you just completely turns on you about having a chronic condition? I had a situation where a close friend completely erupted on me last week about my newly diagnosed scleroderma. I have tried my absolute best to be discrete and unselfish about sharing how I feel. I don't like to always be talking about how much pain I'm in in fear of being called a complainer (and I'm in excruciating constant pain). It's almost like I suffer in silence a lot just not to have someone judge me or yell at me for feeling the way I do. My friend just erupted on me about all the doctors I see, and that a lot of this is just in my head, etc. It's almost like I have to censor myself about what I say. I've sent out the Spoon Theory that was recommended by another member, and this friend couldn't be bothered with "how long it was". I don't really know how to handle this, I'm actually quite heartbroken about it. Just when you think you can trust someone to be understanding... I guess I'm just seeing if anyone else ever experienced this, and if you did, how did you handle it? Any thoughts/suggestions would be greatly appreciated! Thanks everyone! ~ J
  10. Hi JD, I'm 27, and I struggle with Raynaud's too. It gets especially worse when it's cold out. I take Nifedipine too. I've been on it for almost a year now. It works, but my hands and feet still turn blue and hurt constantly. To get through the day, hand warmers have become my best friend. I buy them in bulk at sporting good stores and keep them in my desk and my purse. Mittens help too, more so than gloves. It keeps your own body heat concentrated instead of separated with gloves. Mittens with little pouches in them to put the hand warmers in, so you get even more warmth, are also helpful. Besides running my space heater under my desk 24/7, that seems to help with the hands. ~ J
  11. Hi Queenie! I'm newly diagnosed too. It's been a year for me. I know how really frustrating it is with all the medicines the doctors throw at you. It seems my pharmacist and I are best friends now. Dealing with how to talk to friends and family seems to be the hardest; I face the same issue. On one side, I don't want to tell them everything because I don't want to upset them. On the other side, it seems that my friends and family don't fully understand what I'm going through. I found this forum at the recommendation of my therapist. It's good to know that everyone here knows what you're going through, and understands. Hopefully this forum can be your place of solace, just like it has been for me. You can PM me anytime if you need to talk to someone! Hope you are feeling better! I'm in New Jersey and if where you are is anything like it is here, stay warm today!!! ~ J
  12. I am happy today because I am feeling well enough to make it to a Broadway show tomorrow night!
  13. Hello, This is my first post to this forum. My therapist recommended I sign up for this. Hopefully, I can find some comfort here. I've recently been diagnosed with scleroderma. I guess you can say this is all new to me, and I am scared to say the least. I've spent a good portion of my late teen/early 20 years suffering from diabetes. I always had these really uncommon symptoms happening to me. Difficulty swallowing, extreme intolerance to cold, pain in my joints (especially hands), severe heartburn and nausea, etc. Then as I got past 25, my hands and feet started to turn a light blue color all the time. I always just thought diabetics had poor circulation, and chalked it up to that. I never would have found out I had this condition until one day I went to a doctor to get a baseline health check to see if I could get pregnant. Since I was diabetic, I went to a high risk specialist who took 19 tubes of blood to check for all kinds of genetic conditions and what not. So, on a holiday evening of 2009, I got a call saying I had scleroderma, and to see a rheumatologist asap. So ever since then, it's kinda been downhill for me. I get these horrible headaches all the time. I am so cold, and in so much pain. My doctors have me on so much medication it makes my head spin. I'm 27 years old, and I seem to be falling apart. I can't even function like I used to because I'm in so much pain. It gets really overwhelming for me. I'm trying to remain positive and keep my spirits up, but I have to admit this is really hard. Nobody in my family understands what I'm going through, or how I feel. So I'm hoping to find some solace here with people who may be going though the same thing I am.. Thank you for listening to me "rant" lol. It's nice to know I'm not alone out there. ~ J
  14. Thank you all! I can't even begin to describe how comforting it has been to read all of your kind words. Thank you for the spoon theory link. I emailed it to a lot of my friends who just don't understand what this is all like. Some people were asking how my therapist got me to sign up for this. I have to say, when I was diagnosed, I kinda went off the deep end, and I starting going to therapy to help me handle it all. My therapist has gone above and beyond to find resources for me outside of clinical therapy sessions to help me. She did all this research for me and handed me packets of into on this site, the condition, treatments like biofeedback, local support groups etc. She has really done so much to help me come to terms with what has happened to me, and what I'm going through. Again, thank you all for starting my new year off on the positive note that I really needed. ~ J
  15. Thank you all so much for the kind words and support. I really do feel a little better already. ~ J
  16. Hi.. I've been experiencing jaw pain too. My jaw gets stiff and locks in place. Been happening for the past few months. Hurts to open too. I've been told I might have Temporomandibular Joint Syndrome, and need to see a dentist. Might be an option for you too. The cracks on the corners of your mouth is something called cheilitis. It's a dermatologic condition. I'm not sure if it's related to scleroderma, but having worked in dermatology for 10 years, I definitely know that's what it's called. You should consult with a dermatologist in your area, you may need a little stronger of a cream to help. And yes, a lot of people are allergic to lanolin. Try a petroleum jelly based product a few times a day until you can see a dermatologist. The key is to keep it moist. Just don't lick it (and I know that can be hard). ~ J