Posted 01 April 2011 - 03:41 PM
Hope everyone is doing well. Sorry I disappeared for a week or so but I am back as I promised I would let everyone that has been so helpful in on what has been going on. It makes me laugh....all the months of doctor's basically blowing me off..well now all of a sudden everyone is calling.. Guess it takes this in order to make people listen.. On a positive note I have had things happen very quickly at this point. In one week I met with the Rhuemotoligist who started running tests right away.Thanks to the excellent advice here from you guys I knew what questions to ask when, so thank you. Kidney and lungs testing has been done waiting on the heart next. All kinds of bloodwork done. Most importantly the first thing the Doctor told me was once the bloodtests come back I am sending you to Boston to the Sclero specialists..She said I will gladly stay your local but you need to go to them because they are the best. I knew this Rhuemo was a keeper. Basically she informed me that by next Thursday or Friday she would have the results and would call me. At this point I really do not know which type it is but at least they are listening which you all know is half the battle. This last week has been crazy between working full time and hospital appointments and trying to keep up with my 9yr old's schedule. Emotionally with only 2 weeks under my belt with this is a still a struggle on and off. However after hearing from some of you it has helped so much. I only hope I can pass the same along to someone else. Hugs to everyone Christine
Posted 01 April 2011 - 03:53 PM
What great news! It sounds like all the right tests are being ordered with no waiting about and as for your rheumatologist - yep, definitely a keeper. I am very impressed.
We'll be looking forward to hearing more from you as time goes on - the results of the tests and how things are going in general. The best thanks you can give your 'forum family' is to be an active participant, so we're counting on you.
Have a great weekend!
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Posted 01 April 2011 - 03:58 PM
I promise I will. It made me feel so much better going in with knowledge from you guys rather than the deer in the headlights look.
Posted 01 April 2011 - 04:29 PM
I'm really pleased that your hospital appointments have been so positive and helpful. At least now you can feel that things are happening and you can see a little light at the end of the tunnel. I can empathise with you as before I was diagnosed and waiting to see a consultant, I was so anxious and worried; however once I was actually referred to a top lung hospital my feet hardly touched the ground! Before you could say "Jack Robinson" I was having innumerable lung and blood tests and at last felt confident that I could be treated and helped. I'm hoping that the same will apply to you.
Do please post and let us know the results of your tests and how you're progressing, won't you?
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Posted 02 April 2011 - 05:58 PM
Wonderful news! Taking a hand in your disease yourself and having very good medical back up is essential I feel in the process of learning to except and cope with scleroderma and its sub sets.
"We" are all members of that family, and posting and discussing, asking questions for us is power! But vital to keep going and not feel isolated in our world where people try to understand how many emotions we feel and get scared of, but, yet cannot begin to comprehend how we truly feel. The sclero "family" do, it has given me personally, a lot of comfort and strength.
Hoping your steady road continues and you become an active communicator and poster to us all, we'll be there for you to walk this road with us ok.
Hugs and friendship warmth