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annkd

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Everything posted by annkd

  1. Hi Jeremy - I saw your post and knew I had to respond. I have had 4 laser procedures done in the last 10ish years. I will need another within in the next year or so. The telangiectasia on my mouth bleed. So not attractive. It's not a very comfortable procedure but in my case, I have no choice. The old ones don't come back but new ones did. However, that may not be the case for you. We are all so different. Recovery for me wasn't too bad but one time the doctor (one I hadn't used before) was a wee bit aggressive and I had a lot of scabbing. Again, not so attractive. It eventually all healed up and I felt great. If you decide to do this please find a doctor who has done this procedure before (many times before). Let us know if you go forward with it. Personally, I never regretted it. Ann
  2. Hi Amberjolie, Esophogeal spasms. I suffer terribly from this condition and it is similar to the symptoms of a heart attack. I have had several attacks. The first one ended me in the hospital for several days while they ran a million tests. It starts with mid chest pain, nausea (vomiting), sweating, overall ill feeling. My scleroderma specialist finally realized what was happening and prescribed me Nitroglycerin tablets. When the spasms occur I place one table under my tongue. It dissipates within 10 minutes or so. This condition come and goes. There doesn't seem to be any predictor so you just treat it as it occurs. I don't know if this is a possible reason for your concerns bit I thought I should mention it. Best of luck!! Ann
  3. Dear Sandy - I was thinking about how I felt when I was first diagnosed with scleroderma. What was it? How will it change my life? How long will I live? I was so scared. Throughout this journey I came to appreciate all the wonderful blessings that life had handed me and I focused on that. None of us know what lies ahead. What you have shared by your post has strengthened my resolve in appreciating every day I have. I admire your courage. I appreciate your words. I will be thinking of you, your family, and friends. I am sending you a warm gentle hug from northern California. - Ann
  4. San- I am so very sorry to hear about your loss. It sounds like you were very close to your Mum. Your post touched me because of the difficulty in getting your flares under control as a result from the sadness and stress of losing a loved one. I lost both my parents within 9 months of each other this past year and then my beloved German Shepherd died suddenly. I think I am still in shock and maybe for you that is playing a role in recovering. I decided that I couldn't handle the stress by myself, or even from well meaning family members, so I sought help from a therapist who specializes in grieving. I am doing much better and the flares, although still close together, the duration of them is shorter. Everyone grieves differently. I just came to the realization that I needed help. I am sending you a virtual "hug" and hoping that your flares lighten up soon! - Ann
  5. Hi Jeannie! I am so happy to see your post. It has been so long and the forum just isn't the same without you! I can not imagine what you have been through. You are one tough cookie :) I also want to congratulate you on the birth of your grand baby. How exciting and what a motivator to the healing process. Please keep us updated on your progress. Welcome back !! - Ann
  6. Hi Carole - Yes, I can relate to sudden increase in blood pressure. That is actually how my journey with diagnosing scleroderma was for me. It took several years of testing and looking for the right combination of medications. I found a wonderful nephrologist who put in on the right path. I am checked every 6 months. I will most likely be on these meds for the rest of my life. I hope you can find the right medical professionals to help you. Keep us posted! -Ann
  7. Kamlesh - can you PM me and tell me where in California you reside? I would love to help you with a referral.
  8. Hi Nicole - I have "T" all over the place. It developed over the years and once it appears it does not go away. I have them on my hands, under my nails, on my lips, nose, chest, abdomen, and arms. I have had to have laser procedures on my lips many many times to stop the bleeding. Yes, they do come back, but in my case, it is a necessity. Some of them hurt a bit. Actually, when they start to develop is when I notice a bit of discomfort. I have a theory (but this is only based on my own personal experience) that when I begin to develop more "T" I go into a flare. I asked my rheumatologist about this and he had never heard this connection but didn't think I was totally nuts! One never knows :). Anyway, that is my experience. Hope it helps. - Ann
  9. Jeannie - Wow, what wonderful news! :emoticon-congratulations: I can imagine that you are thinking of all the wonderful times ahead. All the best to your daughter and entire family :). -Ann
  10. I just wanted to take a moment and wish all those living on the Eastern Seaboard of the United States all the best. Please be safe and have all precautions taken -- like all your medications, fresh water, batteries, etc. close by. I know we will be watching closely. Love to all!! Ann
  11. I thought the new format was changed about a week ago or so. I am a bit confused but I will sort this out. Thanks for the reply Joelf, I hope to find the emoticons.
  12. I am wondering if what I am seeing is a new forum format? I can't see anything written about it being changed. Could someone shine some light on this for me? Where are the emoticons? Thanks! -Ann
  13. Jeannie and Susie - it is scary. The unknown is not a comfortable place to be. I have done my research and it is clear to me that I need a dialogue with my rheumatologist. I will let you know what I find out. Your good wishes are appreciated. hugs, Ann
  14. Thanks Susie, I had not even thought of skin tightening. During my last appointment with my rheumatologist he mentioned that my skin was changing on my arms (leathery) and I didn't put this together. My goodness, another change for me. I think I may have to try and get an earlier appointment. Thank you so much. :emoticons-thankyou:
  15. For the past three days my arms and legs have been progressively getting weaker and weaker. They feel like they are being squeezed and it does not let up. My arms are so weak that I find it hard to lift things or even open a door. Along with scleroderma I have fibromyalgia. Could this be related to either? It is making me nervous because it is not letting up. Any thought would be greatly appreciated. - Ann
  16. Hey Jeannie I think you may have caught on to something! Not only are you preparing a lovely coleslaw, you are giving a healthy treat to your pooch. Multitasking at it's finest!! Good work. :emoticon-congratulations: Ann
  17. hi Jeannie- I am so sorry to hear about your getting sick while on vacation. That is just not right. It seems that it is common to get sick while getting to your destination or to get sick when returning. It happens to me all too often. I think it has to do with those wretched airplane recirculating air systems. Upon returning from the east coast I got some kind of virus that lasted for two months. it was a doozy! I wish you all the best in your recovery. So happy you are back! - Ann
  18. :emoticon-crying-kleenex: I am crying right along with you! This is crazy. I think I would send a bill to the doctor ( if he was, in fact, the person who got it all wrong). I have read your posts and I can't imagine how it could have gone this wrong. All that travel would have me in bed for weeks. Are you going to confront the doctor? Maybe you should send a letter to him. I hope you can get this sorted out and let us know about your blood test results. Hang in there!! :emoticon-hug: - Ann
  19. Hi Amanda - Yes, my rheumatologist will be able to refer me to a pain management specialist. It is interesting to note that from the variety of meds from pain patches to other pain meds, my body does not seem to tolerate most of them. It has been an 8 year quest. I am so sensitive to meds. The moderate pain medication works in minor ways but that is it so far. I will keep you posted and thanks for the support. - Ann
  20. Thanks Shelley and Jeannie - Yes, I am experiencing more pain than usual. And YES Jeannie I could use that hug! My rheumatologist suggested I look into pain management. I need to look at ways of doing things differently. I have been to one before when I lived in Los Angeles. I think it would be a good idea. Some things have changed, like when I get up from a sitting position. The pain is my legs in just crazy - like sharp shooting pain running down to my toes. My finger joints are so sensitive. The finger I had surgery on ( giant cell tumor of the bone) is pretty much numb, barely any sensation left. My regular pain meds are not cutting it. So, anyway, things need to change and hopefully I will find a better way to deal with it. I read the article from Pubmed as you suggested Jeannie. Very interesting. Thank you. Hugs to all - Ann
  21. I am wondering if anyone here has experienced "breakthrough pain" associated with scleroderma. . I have heard this from my rheumatologist from time to time and I keep wondering if that means that the medications are not working so well and that the pain is not being managed or is it something else? Any thoughts? Thanks. Ann
  22. annkd

    The Flu

    I talked with the doctor yesterday and he said the best thing is the steam shower (which I do find the most helpful since it helps to relax my whole body). He also prescribed a strong cough suppressant. My body is so sore from the coughing. He told me I could come in anytime. Jeannie, I liked your idea of Urgent Care as there is one very near me. The choking has quieted down but if it returns I can go over there (it is much closer than my doctor). My goodness this has been a wild ride, I will be glad when I can sleep lying down and talk without coughing. Thanks for all your wonderful suggestions and support. I feel like you are all here helping to take care of me! :emoticons-thankyou: - Ann
  23. annkd

    The Flu

    I want you all to know that I've experimented with some of your ideas and the breathing in the steam, tea with lemon and honey worked best so far. Last night I woke up choking and it was scary because I could not catch my breath. I am alone so I didn't have anyone to shout out to so I got into a VERY hot shower and closed all the doors. It steamed up and I just sat in there for about 30 minutes. I calmed down and my nasal passages opened up. I am a complete prune because I have had to repeat this two more times. I am calling the doctor when his office opens. It really gave me a scare. Hopefully he will have some suggestions and at least let me know if this is par for the course with this flu. Thanks all! -Ann :sickly:
  24. annkd

    The Flu

    Jeannie, I will give that a try. What a week I am having. I wonder how long this lasts? How long did it last for you? Sweet, I will have to pass on the spicy food idea - kind of sounds good, I miss being able to eat spicy food, but the end result (no pun intended) would not be pleasant. Thanks ladies!
  25. Well, I am not a happy camper. I caught THE FLU. What about the shot I got? The doctor said it wasn't doing a good job this year. Great. My nose is clogged, as well as my ears. Throat is sore. I ache all over. I can't sleep because I can't breath. I have to run to the bathroom every 5 minutes because of the antibiotic the doctor put me on. And I think I'm coming down with a fibro flare. I thought that because spring was in the air I was going to get out there and enjoy life. I have a question. Does anyone have any suggestions as to how clear my nose a bit and unplug my ears? I can't take many decongestive medications due to my high blood pressure. I have a Neti Pot but that isn't helping. I appreciate any suggestions you can pass my way. Back to my pity party. :emoticon-insomnia: - Ann
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