Just more bad news!

Dearest Djinnie:  I'm sitting here trying to think of something appropriate but none of it would be acceptable for public consumption.  Be assured that there is an immediate stomach drop when each of us reads your post.  Do not hide.  Do not fight this alone.  We are all here adding our hopes and prayers to yours.  There are too many things about this disease that we have to take on by ourselves.  Please let us continue to be a sounding board and place of refuge when the frustration of the moment tries to consume you. 

Djinnie, I'm so sorry to hear this! My thoughts and prayers and support are with you! I'm glad you're seeking a new medical team and taking control of your care that way. Bravo to you for that! About 9 years ago my hubby was very ill from systemic Scleroderma and was getting worse and we just told the doc we need you to refer us to someone with more expertise in this disease. That's a difficult thing to do, confronting a doctor, but we found the right doc and today he is sitting next to me as I type this. So kudos to you for taking control! Big hug to you! Kris

Gordon hit the nail on the head...an immediate stomache drop.  It's what I felt. 

And then, it hit my heart and immediately my heart felt heavy and sad.  I'm sure you are at a loss...right now.  And the devastation you're feeling, well, that just makes you normal.  These are feelings you have to accept and deal with, then, proceed to fight with all your might! 

I'm happy to hear of your transfer to a new team of doctors.  I just bet they are going to take excellent care of you, with a standard of care you've only dreamed of.  That's my hope and prayer for you and your doctors.

We are all here for you, Djinnie.  Use us.  Let us be your soft place to fall when you need to vent or just talk, about anything or nothing at all.  It's amazing to me how therapeutic this site can be.  This is my first experience with a support group, of any kind.  Besides the feedback, advice and camaraderiere we share, there's just something about putting your thoughts and feelings on paper (so to speak), typing away at a keyboard, lost in thought.  It does my body good.  I find it to be extremely calming and it almost always makes me feel better.  In fact, do you know how many times I've typed out entire paragraphs, pouring out my heart and soul or venting or asking what I know are stupid questions, only to hit the delete button instead of the send key?  So lame, I know.  But, it helps. 

Anyway, I'll be anxiously awaiting updates in the coming weeks.  In the meantime, you just keep picturing yourself on the otherside of this fight, stronger and wiser and healthier than ever.  You'll get there.  May have to fight your way there, but if you stay focused and don't back down from the fight, you'll get there.

Keep your chin up, girl.  You got this! 

xoxo

I have to say I haven't known you all long but everyone here is one big family.It's a great feeling to know you have all these wonderful people caring and praying for you! I'll be thinking and praying for you.

Kerrie

Sorry to hear D. You are in my thoughts. Hang in there.

Darron said:

Sorry to hear

I am so sorry to hear your news. You will be in our thoughts, especially the next few weeks while you wait for the scans.

Hang in there!

Djinne,

     I hope you remember how you and the others held me together during my year last year.  You really helped keep my spirits up, and I am here for you now!  This is just a bump in the road, and you will get over it.  Take a day and cry and get it all out, then just get control and take up the fight and know that we are all here for you.  Every little piece of information is as important to us as it is to you, please do not forget to keep us informed and to lean on me, they way you let me lean on you!  I am there fighting right along side you, sending strength, prayers, and love!

                              Love and prayers for good health!

                                Brenda