Famous last words

“I’m going to test for this, but you won’t have it. It’s very rare. But at least then we can say we’ve ticked it off the list!”. Famous last words!

Yep, that is just what my General Physician Specialist said prior to the diagnosis being made of Wegener’s Granulomatosis, or Granulomatosis with polyangiitis. A lovely illness that attacks the very life source of our bodies, our blood!

You can read all about it here:
Wegener’s Granulomatosis

It explains so much of what I’ve been going through. The unfortunate thing is that there is no quick fix, and the treatment is a low dose of a drug that is used for Chemotherapy, which helps mute my immune system, so it stops trying to kill me.

On a rather sarcastic note… If you die of an autoimmune disease, did you commit suicide? Interesting question hey!

Despite the issues though, I do find a sense of relief in knowing what is wrong. I am only in my 30’s yet feel as though my elderly friends have more vim and vigor than I do. Hopefully treatment can restore some kind of regularity to my life soon. It breaks my heart that as a mum I am so often not available to do things with my children. It hurts me that as a wife I often can’t spend the quality time I would like to with my husband.

Maybe one day soon things will improve. I know there is a connection between childhood abuse, PTSD, and auto-immune diseases, but it just seems so cruel. Haven’t we been through enough already?

3 thoughts on “Famous last words

  1. It is not only a rare disease, but a tricky one to pronounce! Although I’m not at all glad you have a disease of any description, I’m relieved you finally have a diagnosis and treatment possibilities. Sending you much love and healing thoughts for all your treatment and recovery. xx

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  2. I am so sorry to read about all of your suffering, I know how it feels to have to sit back and not participate as much as you would like with your kids, it is heart breaking. Thank you for having the strength to share your story.

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  3. My ex sister-in-law had the same disease happen to her. She was about 35 when it happened. She’s doing really well now though. She also had to do the low-level chemo to put her into remission and luckily she had no side-effects from that treatment.

    Hers attacked the kidneys and she ended up having a kidney transplant, but she’s done really well with that as well. Her hubby was a perfect match.

    I hope it goes well for you. I’m sure it’s scary! ❤

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