Carrie's Blog

[Melly]

Oh my gosh. I just read what you posted under "the beginning of my journey," and I'm literally in tears. It hits really close to home for me. Our symptoms were really similar. I was coughing up blood and afraid to tell anyone for a few days because I was scared. I got misdiagnosed with pneumonia. I had those purple patches all over my skin. I lost hearing in my right ear for a while.

And I didn't cry when they told me I had Wegener's. I couldn't, my entire family was there. Sometimes I think it was worse for them then it was for me. Yeah, all these horrible things were happening to us. But they're sitting at the sidelines watching us die and being powerless to stop it. I can't imagine what that was like for your husband. I know it was utter hell for my family.

"It's just a bad day, not a bad life." You're so right, and I think it's easy to lose sight of this. You're a really strong person and your story is inspiring. Thank you for sharing it.

[carriej22]

Aww sorry, I admit I have been avoiding vasculitis forums/groups lately and I missed your post!

I hope everyone can overcome their disease and put up a good fight to have the life that they want.

[LisaT]

Carrie, I'm halfway through all of your blog entries. I love your writing and your honesty. Thanks for sharing....

[feliciamings]

Carrie! Thank you for sharing! I love reading about everyone's paths... I am new here. My diagnosis came almost 2 years ago but I have only recently started reaching out to others going through this process. I love seeing it through everyone's eyes. It's very healing to see that we have so much in common even when each of our paths is so unique.

My blog is myjourneywithwegeners.wordpress.com if you're interested.

<3

[lag713]

Thank you for sharing. I'm reading "The Beginning of my journey" and crying. I saw other people posting that they cried and I thought to myself - "Nah, I won't cry. I'm good." Your story is not at all like mine but the memories of those emotions at diagnosis came flooding in. I don't know if I'm glad I don't have a record or if I wish I did. I do know that I really like your blog. Thank you.

[drz]

Thank you for sharing. I'm reading "The Beginning of my journey" and crying. I saw other people posting that they cried and I thought to myself - "Nah, I won't cry. I'm good." Your story is not at all like mine but the memories of those emotions at diagnosis came flooding in. I don't know if I'm glad I don't have a record or if I wish I did. I do know that I really like your blog. Thank you.

I have had similar emotional reactions to reading the early part of the posts and messages on my caring bridge site that was started by my family after I was diagnosed with Wegs. It can be hard reliving that experience and remembering those feelings from when you were near death. For years I had flash backs sort of like PTSD when ever I had to go into a hospital or have a procedure that stimulated those memories of being back in ICU units. We are lucky though that we are still here and able to remember those bad times and appreciate the life that we still have.

[lag713]

I have had similar emotional reactions to reading the early part of the posts and messages on my caring bridge site that was started by my family after I was diagnosed with Wegs. It can be hard reliving that experience and remembering those feelings from when you were near death. For years I had flash backs sort of like PTSD when ever I had to go into a hospital or have a procedure that stimulated those memories of being back in ICU units. We are lucky though that we are still here and able to remember those bad times and appreciate the life that we still have.

Very well said. I hope you no longer have PTSD-like feelings. We are very lucky.