Patty

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About Patty

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    Senior Silver Member

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  • Location
    N.W. Connecticut
  1. Hi ! Im Patty and I have limited sclero. I just wanted to say hello and welcome . sorry its about sclero but you are about to meet some of the most wonderful people one could ask you know. I guess what I am saying is welcome to the scleroderma family.
  2. Hey Vee, I go the 26th to see Dr Traverse. I am so excited!! I have been ok for the most part. We all have colds. Poor Gia had a double ear infection, sinus infection and pink eye. Poor baby :( She was home for 6 days sick. Poor me! LOL I was going to call you the other morning but with her home sick I never got a chance. I will soon to fill you in more on things. I have lots to tell you. How are you doing? I saw it was very cold there so I hope your doing ok. Love ya, Patty
  3. Janey, I am pretty sure that the nurse that called me said it was a topical ointment clinical trial. Because I only have very very slight raynauds I said no. The nurse said that it was for people with on going trouble from it. I can call UCONN Monday and ask Dr Rothfields dept more about it see if they have it listed anywhere. I was very excited about this even if its not for me, it could help so many people!
  4. I just got a call from UCONN about Dr Rothfield doing a trial for Raynauds. Because I do not suffer from it I said no but I know that wer have a few from CT here so I wanted to post to let others know about it.
  5. Hey Jen Jen, I had one on my index finger also and when I showed it to my dr ( this was a couple years maybe less before sclero diagnosis) he had me get an x-ray. It was a calcium deposit. I don't know where you went but welcome home.
  6. Janey ans Mary, Thanks for the replies on this. I am planning on going down to Texas soon to check out the hospitals and Dr's and also see how I feel with the change to the south west from the north east. Part of me wants to go ASAP and another part feels selfish spending so much money when it can go to holiday so I really don't know when I will go but I want as much info I can get before I get there. I hope to get in to meet a few of the Dr's to see who I click with. I also need to make sure that Gia will be OK down there with her asthma. Lots to think about when thinking of moving to another state so different from Connecticut. Mary I heard that Dr Mayes has written 2 books. I just read her first one and was told that she had a newer book out with more up to date info.
  7. Hi Kelly, First may you and your husband to be have a wonderful life together. I feel that any way to let people know and maybe get an idea what scleroderma is, is great. Maybe in your toast to your husband you could say something about how wonderful he is and loving nd that inspite of you having scleroderma he didn't run but took you as his wife and for that he is your hero or whatever works for you. Maybe you could have some pamphlets handy so if people ask you or your husband about it, you could give them to them. Please keep us up to date on the wedding plans. I love reading good news around here!!
  8. Hi Karen, I got my diagnosis for sclero last year then a few months ago while I was complaining to my dr about how much pain I was in, she checked me again and said I had fibro. She did nothing to treat it so I just am learning to live with the pain. I hope that your dr will do something to help you. its bad enough having one chronic illness let alone 2 ( in my case I also have dermatomyositis as well so for me its 3). I am going to a new dr in a couple weeks so I plan on asking him how fibro fits into everything. I will try to remember to post back about what he says.
  9. Sending healing thoughts to your sister. I will be keeping her, you and your family in my thoughts as I hit my knees at night.
  10. Life is changing fast for me. I am looking into a move to Texas. The Lubbock area but I am not sure how that area will help or hurt my sclero. If anyone has any words of wisdom or knows of good doctors in that area I would love to hear from you.
  11. I am so tired. I can not seem to get out of my own way right now. All I want to do is sleep and rest but with a very active 3 year old, well I can't. I know this if hard on my family life and Tom just won't get it. He thinks I am being lazy but I am just tired. I do what I can and try to push more but some days I just can't. It strange because as soon as the pain left this awful tiredness set it. I can't seem to catch a break. I just feel like I am in a huge funk right now and I hate it but I can't help it. Thanks for letting me have a place to complain.xoxo
  12. Thinking of you and your family. I hope all is well with the baby. Please let us know.
  13. I am a bit nervous with my PFT results so I figured I would come here to ask my questions. My blood gases are as follows: inspired oxygen 21 ph 7.41 PaCO2 42.00 PaO2 68.00 HCO3 26.60 Base excess 1.70 O2 saturation 95.10 Hgb 12.70 hbO2 89.20 COHb 5.50 METHb 0.70 what do the results mean? My general practitioner said my new rheumatologist may want to send me to a pulmanary Dr. As for my MRI they found a very tiny something in my brain. It is 3mm and they think it could be sclero related. Because of how small it is I am not worried about this like I am my PFT. Any info you all can send would be great. I am a bit freaked out right now.
  14. While searching info about steroids and such, I came across this great article about steroids. It has been posted in the ISN medical page: Glucocorticoids and steroids. Here's the link to that page: Steroid Warnings for Scleroderma
  15. Hi Lizzie, I was told my my rheumatologist that I need a high sun screen so I use the one I have for the baby its water proof and I think its 50 also to make sure to always wear a large hat when ever I go outside in the sun. Have a great visit with your dad and enjoy. Remember sun screen and a large hat.