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…

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I know that I am suffering from depression, I am way more withdrawn than ever as it is just easier to stay in my “safe zone” which is my home.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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The upside of Mesh!

I have been trying to write for the past few weeks or so and haven’t been able to…something is blocking me from confronting the enormity of my health issues and personal issues. I still really don’t know where to begin so I’m just gonna wing it! This post may not even be about me and mesh! It will be whatever my fingers type!

So much has happened lately that has rocked my world and led me down a very long dark tunnel spiralling down faster and faster. There have been personal issues that threw me a curve ball and I have had to sit down and pretty much re-evaluate many friendships because I clearly have not given to them what they have given to me.

When James and I were still in the first year stage of our relationship I remember him telling me one time that he felt I gave way more to our relationship than he did, he couldn’t be further from the truth! He is the person who is not afraid to hit below the belt! Some of his blows have been very hard to hear and very hard to accept but most of them were worthy of a kick in the ass, for me.

The only thing I ask of my family and friends is that you love me for me…not for what you want me to be or who I used to be but who I am NOW. I am different and I know that but I feel different in a better way, despite my whining and blubbering now and then, because I have learned so much from this Mesh “test”. There are days I have wished I had never had the surgery because I will never get back the “old” Diane, but that is not a bad thing either because I think “old” Diane was a tad bit snooty and uppity (don’t even know if that’s a word but I just threw it out there!!! lol) and needed a smack upside the head. Boy did I ever get a good smack!

As my life is quickly changing day by day and I am having to learn how to prioritize the things I do in my life, I am learning to let go of the things in life that used to bug me. I used to clean my house every day, (seriously who does that!!!)  I ironed EVERYTHING I wore, even my jammies, man what a nerd, I alphabetized my DVD’s, I must have everything in its proper place before I go to bed, drives James crazy, I ALWAYS lay on my left side in bed and after 10 minutes (I even check the clock to make sure it is 10 min) I roll over onto my right side, pull the blankets up to cover my ear and hopefully drift off to sleep…I wonder why James decided to stay at his house during the week!! lol

I no longer care about the housework or the DVD issue, I still iron but not my jammies, I don’t care about stuff being in its right place because its only gonna get moved the next day! I just let things be, if my house is a little untidy, oh well, don’t visit! I am also learning to stand up for myself…I don’t like confrontation, never have and expect I never will but the difference is now I say something, I don’t let it fester and then one day blow up and regret my words. Words are everything, once they are out there, they are out there, you can’t take ’em back! There have been a few “word” conversations this past month that have left me wondering WTF?! Why do people have this insane desire to hurt you? Are they intentionally hurting you, gosh no, I don’t think anyone intentionally sets out to hurt someone they care deeply for, but the words get thrown out to ya and then you have to decide what the hell to do with them. After 51 years I am FINALLY learning to say, “Wait a minute, what did you mean by that”? That is very hard for me to do, it’s just easier to let it slide but then it eats my insides out for days, sometimes weeks and months and some times even years…that is just plain stupid!

I have been fighting for my rights with regards to CPP Disability and came to the realization about 2 months ago that I can’t do this alone, and that was very hard for me to admit and hard to give up control to someone else. I have to choose my battles wisely these days as my energy level is very limited. I have come to learn that delegating is a wonderful thing but that doesn’t mean I LIKE it!!!

Over the last few months we have welcomed 2 babies to our family and congratulated my nephew on his Engagement! Its been a wonderful time yet I feel very distant from it. I saw the birth of one of my grandchildren and that was a moment I will never be able to beat…what a remarkable day that was…thank you so much Sara, you gave me a little piece of heaven that day and I hope you know how much I love you! I finally got to meet my nieces baby on Sat at Lily’s birthday…he is soooooo cute!! He is now 2 months old and his eyes were wide open for a bit and I got to hold him! I love snuggle-bugging babies!!! Life is so good in so many ways. We have new life in our family, so many things to be thankful for and yet I carry this mesh burden on my shoulder every single day making me decide what I can expend my energy on and what I have to let go…I hate it cause I want to part-take in all of it and I refuse to let mesh take away everything!

Then we had Lily’s first birthday on Nov 10…I don’t know how she got to be a year old so fast! Where the heck did that year go to!!! There are not enough words in this entire universe to express my love for this little munchkin! She is such a cheeky little monkey but very smart and knows how to twist anyones little finger! She was definitely the prima donna of the party! lol  Lily’s Mommy and Daddy are the best parents ever! They are so calm and relaxed with her which in turn transcends to Lily being so laid back…not too much ruffles that little ones feathers!

I also want to acknowledge someone, who shall remain nameless, in my life whom is very special to me to know that you are loved, you are smart, you are beautiful inside and out, you make my life better by being in it, you are special and you matter. Whatever happens will happen for a reason and it may not be the outcome you want, but please know that we are here to support you and love you, always and forever, I swear on my knickers hanging on the door knob (inside joke!!!).

I also want to reach out to a very dear friend who is going through a very difficult time right now…I don’t know why life is as hard as it is but please know that I am always here for you…we’ve known each for 43 years so I think that in itself entitles me to hold your hand when you need guidance and lend a shoulder when you have a cry. I love you and am sorry for what you are going through.

Life is never still, it is constantly evolving and its hard to pick the right path, I want to help everyone but I can’t so I do the best that I can do and hope that I have reached out to the right people. It is the stillness that I am trying to work on right now…I need to still my mind because I still have many health challenges to go through and I need to direct my energy to an outcome that not only helps me but helps my loved ones.

I want to acknowledge my kids…they have seen too much heartache in their short lives and it’s just not fair, but from their experiences they have become more  compassionate. I hate what they have endured but we don’t get a say in whats in store for us, we take it as it comes and hopefully take what we can from the experience and then move forward. They deserve every happiness in the world!

To anyone else in my life who is battling challenges, battle only what you know will help you, don’t be afraid to ask for help, know that you are loved and you matter. Life is tough but as long as you remember to live in the moment, not the past or the present, you can’t change the past or the future but you can live for today.

I hope that in some small way I am helping people on their Mesh journies…We have to stick together and support each other to make our voices heard.

Tonight I go to bed knowing that I am so thankful for the wonderful people in my life, I dont take my relationships for granted anymore and I thank God everyday for James, who is always there for me no matter what.

 

I do not define myself by how many roadblocks have appeared in my path.

I define myself by the courage I’ve found to forge new roads.

I do not define myself by how many disappointments I’ve faced.

I define myself by the forgiveness and the faith I have found to begin again.

I do not define myself by how long a relationship lasted.

I define myself by how much I have loved, and been willing to love again.

I do not define myself by how many times I have been knocked down.

I define myself by how many times I have struggled to my feet.

I am not pain.

I am not my past.

I am that which has emerged from the fire.

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