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Sarah_Smith

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About Sarah_Smith

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    Oklahoma
  1. Sarah_Smith

    Spoons

    I don't know if any of you have ever read this story, but it is really good. And I also believe it is a good way of explaining what its like to live with an autoimmune disorder. But You Don't Look Sick: The Spoon Theory
  2. Sarah_Smith

    Some questions

    Well, I have hit one wall...I got really stressed a couple of days ago and I smoked 2 that day, but I have gone back on the gum and havn't had anymore slips...I still think I am doing good, 2 in a month isn't bad. I felt really bad for slipping and it also made me really sick, so I don't think I will be doing it anymore. I am also starting to have really bad heartburn, and the usual antacids aren't stopping it anymore, so my RA doctor has me taking some over the counter acid blockers, but other than that I am doing really good. Thanks to everyone on here for checking on me and worrying about me, it means a lot. You guys are so sweet. I will catch you up when I know more.
  3. Sarah_Smith

    Some questions

    Hi all. So the party was a success, even though I had to move it from Saturday to Sunday because of rain. Tomorrow will be 3 weeks of no smoking, so hooray for me. :emoticons-yes: I finally got to go to my rheumatologist today after 2 years of not seeing him and not having my meds. He said every thing is looking great, my rheumatoid arthritis (RA) was flaring a little, but he said my Scleroderma was still only mild. He listened to my lungs and said they sounded great and so did my heart, so he is only going to order some baseline tests for me in the next couple of months. They started me on my usual methotrexate and prednisone, I knew they would. And they also started me on a pain med, and he is also wanting me to try something called Neurontin for my back pain. He said he was really impressed with how little the Sclero has progressed, especially since I have been on any meds in 2 years. He said I had very little skin involvement and my internal stuff was still all in perfect working order, even after having this for all these years. He said after I get my TB test done, he wants to try me on a new Infusion of a medication that it used to be for Lymphoma cancers, but has been passed recently for the treatment of RA and has also shown some promise for treating Sclero. It is a 2 hour infusion I will get twice a year. Didn't sound too bad to me. He said with that and my methotrexate together, that it should throw me into remission, so here's hoping it will all work out. Wish me luck, and I will keep you all posted.
  4. Sarah_Smith

    Some questions

    :D Thank you guys for the support. Shelley, I do believe today makes 2 weeks and 1 day of no smoking. I still get the urge to smoke here and there, especially after eating and when my hubby smokes. He has limited his smoking around me, though. He works all day, and when he gets home, he will have one after dinner and one before bed, and any others he will go outside for, so he is trying to help, but he doesn't know that I plan on starting on him about quitting here pretty soon. :) I still need the gum to help sometimes, like when I'm stressed or after eating, but I am only using 2 to 3 pieces a day, and the nurse at my doctors office said she would rather see me chew the gum when I need a "fix", instead of picking up smoking again, but she has faith that over the next few weeks, I won't even need the gum any more. I'm pretty proud of myself, this makes the 7th time I have tried to quit, I always failed before. I do beleive I am gonna make it this time. I know that since I have quit, the house has become a whole lot cleaner, because usually when I get an urge, I find something to do to get my mind off of it, and that is usually cleaning. We are throwing a big 4th of July party at the house tomorrow, so I am going to be busy all day with cooking and cleaning and getting everything ready, so I am going to try to go all day without using the gum tomorrow, so wish me luck. B)
  5. Sarah_Smith

    Some questions

    Thanks for the link ^_^ . Today makes 1 week and 5 days without smoking...It has been kickin my butt, but I am getting there, it keeps getting easier with each day, and I have been using the gum for extra help, down to 2 pieces a day, so I am hoping that by the middle of July, I should have it kicked for good. I called my RA doctor the other day to ask him some questions about my charts and blood work from 2 years ago, and even though they had always focused on my RA, (thats all I thought I had for all these years), I actually have something called mixed connective tissue disorder, being a cocktail of RA, Sclero and Sjogrens. But he said that my crippled hands are from the RA, I have no tight, shiny skin anywhere, but I do have white patches on my knees and elbows and some on my hands, but they are not hard or shiny, so I don't know if that is from the Sclero or not. The only signs I have of it are my calcinosis, my Raynaud's and some tiny red spots on the palms of my hands, so when I go into him in July I am about to tell that man that he needs to plan on spending a lot of time in with me, because I have about 2 pages of questions for him to answer. :D
  6. Sarah_Smith

    Some questions

    Thank you all for replying. It all makes me feel a lot better. Today I am getting ready to throw a birthday party for my 9 year old daughter, and I am not going to let the stress and depression of all this get to me today, it tried this morning, but I am trying my hardest to ignore it. I am having some shortness of breath right now, but I do believe that is because I have worked myself into another anxiety attack, because it is very easy to take a good, deep cleansing breath at any time during this attack, plus I am in the process of quitting smoking, so I have been coughing a lot the past week and clearing all the yuckiness outta me, and my mom says that that is gonna cause a little shortness of breath anyways. I am going to take this all one day at a time. I called my RA doctor yesterday and spoke with his RN, and asked her about my chart and blood tests and what she thought about it all. She kinda laughed and said honey, you are just one of many we see everyday that have the same, or close to the same thing wrong, and you're not the first one to freak out and worry yourself sick. Then she told me that out of all of the patients they see, only a very small handful experience that nasty, awful things I have read online, and then she laughed when I told her I just wanted to make it to 46, and she told me that she saw me making far beyond 46. So to know for a fact that the RA doctor sees others like me on a daily basis makes me feel better. I have an appointment with then on July 7, and I am so ready to go because I feel that once I get in and start seeing him, a lot of my anxiety will go away because I know I will have a doctor that knows his stuff looking after me and monitoring me. Like I said, it's the bad stuff, like the lung and heart involvement that scares me the most, so I will be happy to have someone watching over me and those things. Thank you all again, and I will keep you all posted on how things go for me.
  7. Sarah_Smith

    Some questions

    I'm 26, and when I was 14 I had some bumps on my hips biopsied and removed, they came back as Tumoral Calcinosis. Now when this all came back, the doctor reassured me and my mom that I didn't have cancer and that I was fine, never said the Calcinosis could be linked to anything else. Fast forward to me at 16, all of my fingers on both hands except my thumbs are starting to bend toward my palm and I have severe pain and my fingers get cold and turn white when I'm cold. This scared me and my mom so we go to a general practitioner who does a lot of blood work and it comes back with me having juvenile rheumatoid arthritis (JRA). So we go to a rheumatologist who then does more blood work and an exam of my body head to toe. Blood work comes back with a diagnosis of JRA and some other test showed high probability of Scleroderma and Sjogrens. All I was concerned with at the time was the RA since it was a positive that I had it. I had to stop seeing my Rheumatologist 2 years ago because I lost my insurance, but in that 2 years of not taking any meds or anything, nothing has gotten worse. Now here is my concern. About a year ago, the bumps came back on my hips, and I remembered what they were called, so I started looking them up on the internet, and BOOM, always associated with CREST scleroderma. Then I discovered the Raynaud's and realized that is what was up with my hands when they get cold. I remembered my Rheumatologist saying something about this Scleroderma all those years ago, but he never said anything about the Raynaud's or the calcinosis being a part of that. So now here I am, two years after loosing my insurance and no way to go to a doctor, researching scleroderma on the internet, which of course keeps telling me I am going to DIE from lung and heart failure withing the next few years. I am scared to death because I have 3 small children, and the oldest is only 9, with the youngest being 3. I don't want to leave my babies with no mother and I have no idea what to expect from this. From what I have read, I don't think I have diffuse scleroderma, because like I said, the calcinosis was found 12 years ago and the Raynaud's started 10 years ago, and I have never had any skin issues or anything like that. Seven months ago when I started reading all this stuff online, I threw myself into depression and started having panic attacks, which of course led me to shortness of breath and heart palpitations, so of course I thought my lungs were being affected and my heart was failing. So after several trips to the ER, two EKGs, four chest Xrays and a chest CT, all I was diagnosed with was Anxiety and a mild case of Pneumonia, who I saw a pulmonologist for. He said he was pretty confident that nothing was happening to my lungs at this point in time. But I am still scared. I get Medicare in July, so I will be able to see my doctor again after 2 years. So what I am wanting to know is, since my lab came back with a high probability for Scleroderma, and since I have these calcium deposits and the Raynaud's (which isn't bad, it hardly bothers me when I'm cold, never really hurts, and I haven't gotten the calcinosis anywhere else), does that mean I most likely have CREST? And since I don't have any skin involvement and I haven't had any organ involvement, is that a good sign? All I want to know is if I am going to be able to watch my babies grow up. I want to make it to at least 46, then my youngest will be 23 and all my babies will be grown and I would have gotten to take part in making that happen. Would someone please take the time to answer some of this for me, because I can't seem to find anything but bad news online.
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