Needing some encouragement

[suega]

You have probably read posts from me before- I was told by my first rheumy that I don't have lupus or any auto immune disease.  He spent only a few minutes with me and never even gave me a full exam.  I look just fine, but I know I am not okay.  Regardless of what he said, my labs really pointed to lupus (+ANA and +anti-smith) so I went for a second opinion.  I just saw my new rheumy who was wonderful and very thorough.  Turns out she is confirming my thoughts that something is wrong, probably lupus, but she is running more tests just to be sure.  She feels it has effected my vascular system.  After her exam, she had a whole list of things that she noticed and noted in my file.  I am being sent for physical therapy and started on some topical ointment for inflammation of a few joints, along with starting on omega 3 6 9 and baby aspirin.  I knew something was wrong, but I feel like she found so much more wrong than I even imagined.

I wanted an answer so badly because I have felt like it must be all in my head for so long.  Now that I am closer to an answer I am relieved but so overwhelmed.  I am scared.  I don't know what to expect and my biggest fear is that I won't be around to see my children grow up.  I have seen the stats and know that most people live full lives, but I am a glass half full kind of girl and just can't help but think I might be one of the 10-20% who don't make it past 10 years.  Did you all feel this way at first?  How do you cope?    

[TrudieC]

In my first few months after diagnosis I felt like the world's biggest hypochondriac and was obsessed with the disease.  The more I learn and the longer I am on the plaquenil the better I am feeling both emotionally and physically.  I am scared of other organ involvement and am having a complete GI work up done in a few weeks as there is concern of my bowels being involved.  I do much better when I know what devil I am dancing with and can then go in for the knock out punch.  Read, read, read, and ask your questions.  It does get better but will take some time.

[karajo]

Of coarse we all feel the way you are feeling.  I remember when my regualr dr. told me it was looking like it was proabably lupus, I cried for days.  I kept telling myself and my dr. all the reasons I felt it was not lupus.  But deep down I know I was just in denial.  But by the time I actually got a dx, I was ready to move on...whatever the cost.  'Cause I surely couldn't live being as sick as I was.  

Trudie is right, you will feel so much more positive once some treatments are started.  The therapy will be a big help too.  My dr. put me through therapy too.  I was bedridden before and the therapy brought me up out of bed.  But I was already on plaquinel when I started therapy.  I too can testify of how much plaquinel has helped me.

Praying for you and for you to be encouraged,
Kara