I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Lupus has opened my mind and my heart to the possibilities of how to live well with an open mind…

on November 20, 2012

I’m writing this blog about Lupus in my Mesh blog as I havent quite yet decided if I will start a new blog for Lupus or just lump it in with Mesh. The jury is still out on whether I got Lupus because of my mesh device or if it is a huge co-incidence that I was diagnosed with Lupus out of the blue. I know how I feel about it but it is not in my best interest to blurt out how I REALLY feel about it all.

I was sitting here tonight trying to decide which is the bigger pain in my butt, Mesh or Lupus? It’s an extremely close call as they are both chronic and life altering. On the one hand the mesh is causing my body to reject its own immune system and eating away literally at my insides, where as the Lupus is causing me to lose mobility, functionality, display disfigured fingers and toes, partial loss of eyesight (it is still not confirmed if it is the Lupus meds causing this or the Lupus itself) and extremely rigid fingers making typing very difficult.

Every day I am forced with the decision of how far to push my body, and each day, I decide in error. As I struggle to keep my life moving forward, grasping for instances I can exert control over my illness, I grow weaker and more vulnerable. Lupus always seems to be one step ahead of me, inundating me with a never-ending supply of symptoms and side effects.

I feel like I am in the midst of fighting an uphill battle against my pain and suffering, feelings of helplessness and  vulnerability have taken root and I have lost sight of any sign of health or wellness. I feel like there is no objective to recover from Lupus but to simply survive and exist. I feel like it is normal for me to live with endless fatigue, constant agony and just plain feeling like crap for days, weeks and months at a time. I don’t remember who the strong, vibrant, alive and funny Diane is anymore and I am scared that I will never know that Diane again.

I know that I am suffering from depression, I am way more withdrawn than ever as it is just easier to stay in my “safe zone” which is my home. I don’t owe anybody any explanations if I don’t socialize. It’s very sifficult to explain a chronic illness to anyone when there are no visible signs of an illness. I know my spirit has been broken and that is the one thing I will work reverently to get back.

I know that I will not wake up one morning and  magically have an answer as to how I got to this point but I know I MUST work hard at getting out of this depression. I wrote four questions on a piece of paper:

1)  Am I strong enough to relinquish the power I am frantically trying to hold onto?

2)  Am I capable of valuing myself more than I value what I do or what Ican accomplish?

3)  Am I willing to re-evaluate my life in order to start the process of healing and understanding?

4) Do I value myself enough to try to accomplish any of the above

The answer to all four questions is a resounding YES, I matter!!!! The question is not whether I will die but how I will live.

The one thing I know I must do is grieve for my old self and life and my lost abilities. I have come to realize that it is ok to feel sad because the sooner I can acknowledge the sadness, the sooner I can start accepting my loss’ and move forward in a positive direction. Lupus is not the end of my life, it is the beginning of a new and different life, it is a test of my emotional state and as long as I stay strong emotionally I can learn to live my life with Lupus.

I believe that each obstacle I overcome allows me to withstand each test I am challenged with and each time I emerge victoriously as a stronger more humbled person. Gone is my arrogance and insensitivity and my failure to appreciate fully the blessings in my life. I am learning to accept  and see past the pain through the hardships, and into the light. It’s the stuff we do today that makes us who we are tomorrow. Right now I can’t see beyond today but that’s ok because I just need to make the right choice for today, I’ll make tomorrow’s choices, tomorrow. 

I need to embrace this new life but even though there will be days that I feel helpless in the face of Lupus, I  will also have regained control of my life. I realize that I have a disease that has taken control of my life, so I have a choice to make. I can let the disease rule my everyday life, or take steps, not to control it, but to control the role it plays in my life. I hold the key to managing a life diagnosed with a chronic illness which in turn allows me to manage my disease, along with my expectations of what I allow the role it can take in my life…which I can assure it, it may try to control me at times, but I am very good at living through adversity, I actually think this was a quality God made sure I knew because I have certainly been tested many many times in my life and so far I have always gotten back up when I’ve fallen down.

I am already learning that this is a journey I will enjoy writing about, the ups the downs, the good, the bad and the sometimes ugly truth of Lupus, it will for me be a creative outlook. Do I wonder how I got to this point or why, every single day but the what and whys should not matter anymore, I have a beautiful granddaughter I need to be there for so I have to learn how to balance out my days. Between Mesh, Lupus, Rheumatoid and Osteo Arthritis, MDAS and Connective Tissue Disease, my plate will be full everyday but for each test thrown at me I will challenge each disease, I will not give in, I will not go silently into the night, I will go kicking and screaming all the way!

This BLOG does not end here, this is the beginning of a wonderful new relationship that may challenge me to the core, but one I am up for…

Often daunted, NEVER defeated.


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