danelledawn

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Everything posted by danelledawn

  1. Congrats Razz, I am so happy for you and it's wonderful that you were able to write a great book and get it out there. I finished reading your book last night and you really are an insperation to all us. You are amazing for being able to put what you went through into a book, that will give insight to this disease to so many people. Great job
  2. Hi all this is my first post on here, I've had sclero, raynaud's, shrojrens, fibro, and lupus diagnosis ten years ago. Mine has held pretty steady, but since our move to Wyoming two years ago, it seems as if all of them flew into high gear. I've had alot of stress in the last few years also the climate here is so different from NC, so maybe that has something to do with my non stop flare's. My rheumatologist is one who beleives that we treat as I show more, so far it has been working I guess. So about a year ago I had the worst pain in my ribs that would double me over. Well went to many Dr's for a year to end up back at my primary care physician and decided to check my gallbladder. Well it has doubled in size so it needs to come out. On top of that they did a scope and found that I had a hugh ulcer that was not treatable by meds, also found that I'm starting to get the scarring in the esphous(sp). Got the ulcer healed and will have surgery on the 4th of Aug thank goodness. In June I went home to see family that I had not seen in three years, the first thing they all said to me is why you shaking like that even my brother who doesn't notice those things noticed. Then when I came back after two weeks my husband noticed it also. So I was on the phone with my mom and I was talking to her about it, since my dad's sister alway's shook like that and my dad did also but not as bad. Well my mom finally tells me what made them both have those tremors with there hands. Seems that my aunt has very severe parkinson's and dad's was never diagnosis. It's terrible to say that I did'nt know but we did not see my aunt alot as I was growing up. So my mom tells me that I should have it checked out just in case. Went to the primary care physician explained everything to him and gave me the once over. So I'm waiting to hear that it was nothing (I tend to wait out symptons to see if they go away), well that was'nt what I got. He said that I am showing tremors and something with my ankles and feet. Seems now that I may be showing early signs of parkinson's but he's sending me to a neuro for a complete check. So has anyone else have had this happen to them, if so please let me know how it's went. I walked out of the office pretty shocked and I keep asking myself is it possible to have so many things going on in one body. I would love any advice and thanks for listening to me Danny
  3. Thank you all so much, it's was such a releif that I did'nt here the actual name of what it's techinally called because I was over joyed at the great news. It is such a great thing when we get good news and I had to let you guys know and wanted to thank you for such support. It is so great to know that such wonderful people are here to support each other.
  4. Well I just want to thank you all for all the support and well wishes. I seen the neuro yesterday and I don't have parkerson's, I do have a tremor disorder but I will take that and I am so happy I could jump to the moon. The treatment for it if I want it is a blood pressure medcine, but he said I really did'nt need it yet. So I can wait on that I did'nt want another medicine added to me again. Thank you guys so much for all of the support it really helped me so much
  5. I kust got back from my post-op vist with my surgeon. He took my gallbladder out a week ago today and it could not come soon enough. He told me that it's a good thing we did take it out from the pathology report. The report said that my gallbladder was chronic something, but in simple terms it was dying from the inside. Has anyone had anything like this since you were diganosed with scleroderma? I started really having severe pains over a year ago, but I would see one Dr. and so on no one could pin point my pain. Went back finally to my family Dr. who ran an ultra sound on the gallbladder. The bile duct was alot bigger than it should be so I had ct scan, MRI and a Hydro scan that only showed that my gallbladder had enlarged to two times the normal size. During this time I also found out that I had a hugh deudenal ulcer, but it had to be healed before the gallbladder could come out. My surgeon told me today he was very glad that I really pushed to get the gallbladder removed because it would have caused so much more problems and pain. The reason I pushed for it was due to the fact that the gallbladder was messing with everything else in my body. Thanks for listening Danny
  6. Sam, I was able to come home the same day as my sugery, I was very groogy for the rest of the evening so my hubby had to help me get back and forth from the restroom. For me at home after it, we had crackers, broth, jello and pudding and sprite oh and sherbert.Make sure that she really keeps up her fluid intake that is so important. Then for me it was hard to find a postion to lay in, so I ended up on the couch at first but then realized my recliner was best for me with alot of pillows. The one other thing that Jeff and boys made sure of was that the dogs did'nt jump up on me even my little one and when they would just jump up to the couch and not on me it hurt also. Hope this helps and if you have more questions let know and if I know I'll try to help you out.
  7. Razz you are so right about him not writing it off I am so happy to have it finally out it was really a hard year. When the Dr told me that mine had doubled in size but was still working from the tests view I knew it had to be something. So glad I did keep going to appts for the pain it was causing me, because if I did'nt I would still be in pain and it truly messed with my whole body so it would have kept getting worse. Ozzy your right about firbo it is an easy out for Dr's sometimes. When I seen the ortho that day and he told me it was just fibro when I got in my car I just cried due to being in so much pain. Thanks for all the well wishes, slowly I'm starting to getting better and finally can eat again.
  8. Peggy you are so right we do have to be are own fighters for sure because we know our body best and we really know when something is not right. When I was being sent to the different Dr's for consults of the mystery pain, there was an orthopedic tell me that the pain was fibromyaliiga. I knew for certain it was'nt that at all.When they sent me to the GI finally they found that I had the ulcer and he thought I had celiac also but the biospy came back good.When I read up on what it was I would have never been able to stick to the diet. But I also learned that my esphougas has started scarring now, so I am very glad that I stuck it out because now I don't have the stabbing pain in my side orr up my back. Thank you for the response
  9. I have shogren's also when we lived on the east coast I would use an thick gel that was sold over the counter when I would go to bed everynight and then use eye drops a few times a day. Once we moved here to Wyoming I was in a brand new ball game with my eye's, they hurt so bad, constanly had red eye's from the dryness. He put the plugs in like Nan said she has, and it has been wonderful for me. The eye drops stay in my eye's and the ache that I had in my eye's is gone. If one should ever come out, I will be there getting it replaced as they are great. If they had not worked as well as they have for me he would have also added restatis.
  10. Thanks everyone for welcoming me and the advise. I am crossing everything in hopes that these tremors are something else and not parkinson's. I will see the neuro for the consult on the 13th of Aug, it was sooner but being on the 5th and me having surgery for the gallbladder on the 4th of Aug was going to be a problem. What's funny is that I have'nt noticed it but everyone else has, so I must be adjusting to it without even thinking about it. I can't ask my dad any questions about his because he passed in 1994. So for the time being I'm just going to focus on getting my gallbladder out and recovering from that and then deal with it. Again thanks for the welcome Danny