Wednesday, July 31, 2013

Finally, Finally confirmed ...

It's been one year and 6ish months.  It's been over eight months of non stop blah/sick/gross/aggravating doctor visits.  But, now ... I have been re-diagnosed with .....

Wegener's Granulomatosis or Granulomatosis with Polyangitis.

I feel like I've said that before.  Oh yea, I have.  I was diagnosed, then my old rheumatologist read the pathologist report and said "No, you don't".  Then, symptoms progressed and he said "OK, I think yo udo but I don't know if I want to really go ahead with this right now." and then I found my dream rheumatologist and she actually did some serious leg work and CALLED the Stanford Pathologist to talk with them about the findings and she says she has all the pieces she needs to go ahead with treating my disease so I can live my life again.

I feel like a giant weight has been lifted off my brain.  Finally.  Someone knows what's going on and I can move forward and maybe, just maybe, feel like a normal person again.  I know it won't be a forever feeling but at least it's going to be for awhile right?  Maybe I'll never flare back up again.  Maybe I'll have several good years before things go sideways.  The point is ... I know for sure, 100% this time and I will treat it, and I will live with it.

Sure, there's always those stresses that come with being diagnosed with an untreatable condition.  The what ifs that will constantly swirl around in the back of my mind every time something seems not right but ... it's in my chart.  If I get rushed to the ER unconscious by ambulance or something, when they pull up my chart they will SEE what's going on.  I won't need to have someone there to 'splain!  Now, let's just do what the doctor says and make sure I don't end up being rushed there by ambulance.

I'm still angry about things from my earlier post but, then I got the email and call from the doctor right after.  It was a bit of bad and good news all at the same time.  "You have this horrible incurable disease" YAY!  Right?  But, it's not that I have a disease that I am happy about, it's that finally I have all the T's crossed and I's dotted in my medical file.  It's that I finally have the official final word about what is going on and a doctor willing to do what it takes to make me feel better.

Despite everything, I am happy with what they said.  I know it's not ideal.  Dan was hoping they would say they couldn't figure it out and it was nothing and not to worry, etc.  But, I knew there was something wrong, my bloodwork was saying there was a problem and my body was telling me I wasn't normal.  I knew there would be some sort of diagnosis at the end of all this and not necessarily the originally thought disease.

I was right.

I know my body.  I know how I was feeling.  I know how I am feeling now.  The two are completely different.  I was feeling fantastic and then ............................. not.  My brain wants to feel good and get crazy motivated to do things and then I collapse in exhaustion feeling sick because my body doesn't agree.

Soon, I'll do my medications to get into remission and maybe, just maybe, get back to losing weight and feeling good again.  I still have goals.  Half Dome, actually running an entire 5K or 10K.  Not sure I ever want to attempt a half marathon.  But to be able to run a 5k without walking would make me happy.  I want to have an LBD (little black dress).  I want to be healthy and active and get back to hiking and doing things all the time. 

I want my life back.  Soon, I should have it. Right?  Hopefully? 

This is a giant leap in the right direction!

No comments:

Post a Comment