I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Mesh vs Lupus…which is the lesser of two evils…

on September 20, 2012

This is a really hard BLOG to write tonight. I am already in tears before I barely get started.

I am thrilled to finally to have a diagnosis that is being taken seriously, I’m not out of my mind, I’m not a hypochondriac, I’m not a bad person, I have a real disease…I don’t try to get out of things by making up excuses, I actually wish I could part take more in the care of my mother, be a better Mom to my kids, be a better partner to James and a better Nana to my precious Lily…I WANT so badly to not be sick but I didn’t choose this, it chose me. It’s a bitter-sweet feeling to finally feel validated and justified in knowing I was right and I persevered in the quest to find the answer to my health issues.

As good and bad as that all sounds it hurts me to the core of my being to say it, acknowledge it and figure out how to incorporate it into my life. What do I do with Lupus? How does Lupus fit into MY schedule? How much is it going to affect my life? Will people think differently of me? I want to be treated the same way I always have been, I EXPECT that but sadly today was my first day of realizing I am not that person and Lupus does and will play a huge roll in my life and I also decided I DONT LIKE it!

I realized that some people are already starting to treat me differently…I am more work now because I can’t walk that far and the 20 lbs I’ve put on over the past year due to not being able to keep up my same exercise regime make me very uncomfortable. I don’t like that I am needing to sleep more, especially in the afternoon, this does not sit well with me or other people in my life.

I actually had to take a break writing this…my heart hurts, my soul is shattered and I feel lost. I don’t get lost, I FIX things, I nurture people, I advocate and I educate on the dangers of Mesh, I don’t allow MESH to define me, and yet tonight I can’t slip into any of those roles. I don’t know where I belong tonight, I don’t feel like I belong anywhere…I hate that I can’t dig deep enough to get out of the black hole that is surrounding me. I hate Mesh, I hate everything that comes with it, the sadness, the loneliness, the pain, the loss of everyday living doing simple mundane tasks….funny how I hated those mundane tasks while I was able to do them and now I would give anything to be ABLE to do them, I hate that my body wont allow me to live a “normal” life, and normal comes in many shapes and forms, so I guess the moral of my own story is to find “MY NORMAL.”

I have much learning to do in this Lupus journey…I need to take in all the information I can and adapt it to my life. Like Mesh, Lupus will NOT define me. I need to take back control of my life and put all the mesh particulars into their proper place, on a shelf in a closed cabinet left to the dust bunnies…

I hope that I have the strength to speak my mind about my health to people when they don’t understand why I am to tired to do anything other than lay on the couch…its not because I don’t want to be involved, it’s because my body is simply saying NO, for that particular day…

For tonight, it’s a hot cup of mint tea, my kitties and Christian Grey…can you say “ohh la la” !!!!


4 responses to “Mesh vs Lupus…which is the lesser of two evils…

  1. my heart is reaching to show you the light….feel it ? its there!!!!

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  2. Diane Olsen says:

    The people who don’t understand are not true friends…those who are will love you for you…no matter what!….Lupus is not something that effects us older folks…no pun attended…my niece is 20 and has it…keep strong….

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