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I know that I am suffering from depression, I am way more withdrawn than ever as it is just easier to stay in my “safe zone” which is my home.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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A little bit of mesh, a little bit of lupus, a little bit of Osteo Arthritis and my vanity is gone…

Today is a day about letting all the demons go…the ones in my heart and soul, physically and emotionally.

I have been wanting to write this post for a few days now but have simply been too tired to sit and write. I really don’t know where I am at emotionally, I feel like a black cloud has been cast over me and I can’t seem to shake it. There have been a number of events that have happened in the past week and from these events I have had a hard time not getting caught up in the spiral downward.

First off I want to say ” THANK YOU” to all my wonderful family and friends for the emails of encouragement and love. To sit down and answer each one is a daunting task and one I am not going to achieve, but PLEASE don’t stop emailing me! You guys are the bridge between my world and the real world…So, for now I have decided to send out an email and also post to my BLOG.

As I went through the individual emails I was overwhelmed with the love that was surrounding me because along this journey somewhere I have got lost in the worlds of Lupus and Mesh and have felt more often than not, I am just whining and complaining about my life. At times I felt like a hypochondriac and it scared the hell out of me thinking I WAS out of my mind!

When I got the diagnosis of not only Mesh complications and required surgeries to be rid of 75% of it and then the Lupus,  Fibromyalgia, Connective Tissue Disease and Rheumatoid and Osteo Arthritis, I felt over joyed because FINALLY my hard work has paid off, I am NOT crazy, that in itself was validation for me pursuing this task!

So now that I have all of this I am finding life difficult, I should say WAY OVERWHELMING because I literally feel like the life has been sucked out of me. Lupus fatigue is a fatigue like no other, I’ve never felt this before and it is difficult to get a handle on it. My Rheumatoid Specialist has encouraged me to join support groups but most of all to know when its time for my body to simply just rest.She said half the battle of Lupus is overcoming the fatigue.

That is going to be the hard part for me, rest…hmmmm…how can I do that when I have so many plans in terms of writing my book, advocating and educating women and men on the dangers of mesh, playing with my Lily and spending time with my family and friends. Please know that I appreciate each and every one of you and although we may not speak on the phone much or visit, you are all in my heart. This is such a difficult journey and I have to spend my time wisely in terms of visiting and going out.

There have been a couple of  events that I have  had to swallow my pride on and one was buying a “cane”. I cant walk without assistance right now as the Lupus has caused bumps to form on my feet. As I was purchasing this cane, I was in tears, it took me back to a time in life when I had to go cane shopping with Ron. I was so saddened when we got to that stage in his Cancer journey and remember thinking, “I wonder what he is thinking about this”…well I can honestly say I now know what he was thinking, all the sadness and loss he was experiencing. What I did do though was buy a really cute and sexy cane with butterfies all over it…I figure if I have to use a cane then I want it to be a fashion statement!! I  also got my handicapped decal last Friday and we tried to down play it by being “excited” about front row parking! It was sad and I felt hurt but I quickly got over it when we got to the mall and I got out of the car with my purse in one hand, my cane in the other and realized how thankful I felt to not have to walk far…

James and I had some errands to do yesterday and I wanted to go, against his advice,  and honestly after 2 hours I felt a fatigue hit my body like no other…I was in tears screaming how much I hate this new life and how the f*ck do I get the old one back! Jame”s is overwhelmed with frustration and wants to kick every Dr I have in the ass, except for my Rheumatologist!!! I see the knee surgeon tomorrow and he wants to come in with me to have a “talk” with him…not gonna happen! I know James will “rip him a new as*hole” and I DONT want to be around when that happens!!!

We both feel like we have been tossed out to sea and we are floundering around trying to find our niche’ in life. Do I fear that people will walk out of my life, yes, every single day, but I am learning to work with those fears and I guess bottom line is “if they don’t stay now and let me go then I guess they were never meant to be in my life”…a friend reminded me of that a few days ago and it is so very important for me not to take the blame for people leaving my life, this is not something I asked for or wanted but it is what it is…

I  came across a wonderful story the other day on my Lupus site and I want to share it with you all. It basically speaks of how to make choices in your life when you have Lupus or any other debilitating illness, or even at a really rough patch in life, which we ALL go through at some point or another. You have to make your choices wisely and pick your battles wisely as you will read in the story.

The story is from a woman who suffers from Lupus and how she lives day-to-day…

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

I have to figure out how to live with this disease and I am still walking blindly into the night but I am educating myself on how to live a full productive life, maybe not as productive as before but that does not mean it is not as full and rich as it were, quite the opposite actually, it is filled with just as much friendships and love as it ever was and I am now very careful about not taking those relationships for granted.

My one big heart ache right now is Lily, I want her to know her Nana and understand that there will be days when Nana can’t do certain things with her but because I may not be able to be as actively involved with her does not diminish my love for her…When I look into her beautiful eyes and hold her tight to me, my heart is filled with so much love, how can this one little “princess” not make my life rich and beautiful, well she does and I will never let that go…Lily is the flame that burns brightly in my life everyday and she is my reason for fighting back against all that has been thrown at me. When I feel the tears run gently down my cheeks, it is  because Lily that brings such pure joy and love to my life and I cry not for what I have lost but for what I have gained and learned from my sweet sweet grand-daughter…

So please know on the days and/or weeks I don’t get back to you, it is not because I don’t care, it is simply because I have “run out of spoons”…

 

“Often daunted, NEVER defeated”

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

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” !!!!

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It’s not always about the MESH!!!!

I’ve been giddy about writing this blog…The words have been jumping out at me for days now but I just wasnt ready to put the words into text, until today.

Over the course of my life I have encountered life changing events that many will never deal with in their whole life and yet for some reason, God has chosen me to live them, learn from then and share them with the people I love, to help them in their own personal journey’s in their lives.

I don’t pretend to know all or even half of all but what I do know is that from adversity I have emerged from the embers of the fire stronger and wiser and it is from my life’s events I have come to love writing, it frees my soul and soothes my pain, writing is the reason I am still sane after all these years!

I’m not sure if my MESH blog is the right place to post this BLOG but I don’t really think it matters where I post it as long as it is posted…

My life has not by any means been easy…I  had a near death experience at a young age and yet there are days it feels like yesterday and all the fears I had back then I still carry around with me.  I remember very little of the actual illness but I remember everything about the events that took place in the midst of the crisis. I was in a coma and paralyzed from the neck down, my body was slowly shutting down and my parents were told to gather the family. I remember the conversations my Doctors had with my parents over my hospital bed as clearly as if it were yesterday. I wrestled with the pros and cons of living and or dying but what I remember the most is my parents and my 10 yr old brother at that time begging me not to die. I heard them as clearly as I am listening to the TV right now. My girlfriend whom had died 2 months previously told me it was not my time, go back to your family she said…I was torn between the two worlds and yet I knew I had to listen to her…I awoke the next morning to the tears and cheers of my family. That event had mapped out my life. unbeknownst to me…

My father died a few years later and I remember the sun shining brilliantly that early May morning…the birds were circling over their house and it was a glorious morning which I know sounds totally ridiculous but there was such a sad yet wonderful calm that morning. My Dad was a man loved by all, he had the most jovial and infectious laugh that could cheer up anyone, even on their darkest days. He was a man filled with so much love and joy for life despite the death sentence he was given at only 46 and yet he laughed and loved deeply every day of his remaining years, he was a man of true character and I know he would have loved his 9 grandchildren and 1 great-grandchild more than anything in this world. I still to this day, 24 years later, miss my Dad more than I can put into words.

Life was hectic as my husband and I were busy raising a young family and we both worked full-time opposite shifts so our kids would always have their Dad take them to school and me be there to pick them up from school. We saw each other on Thursday evenings and Sundays and as hard as it was, we knew it was best for our family, we believed then as I still do now, you make whatever sacrifices you have to for your kids and their well-being and I do not have one single regret about that time in life.

My husband was diagnosed with Brain Cancer in 1998 at the young age of 47…to say we were shocked would be an understatement…the words were thrown at us in one sentence which ended in his Brain surgeon telling us he would  be lucky to survive the surgery. You can’t get any blunter than that and I knew in that instance I would be not only the bread-winner of the family, I would be the wife, mother, and fulltime caregiver to my husband. It was a role I was thrown into and to this day there are events that happened that still bring me to tears and I don’t honestly know how I got through some of those dark days that spilled over into years…My husband passed away in March 2004 and I honestly did not know how to go on with my life but like with anything else I had been through, you just get up each morning and put one foot in front of the other and trust in yourself that you are able to live the life you have now been given.

In January 2007 my 22-year-old son was diagnosed with a high-grade Melanoma…I got the phone call at work and literally fell into my chair with a cry that came from  the depths of my soul…I never want to go through that experience again. I took a leave from work to help my son and his fiance’ ( whom is my 2 daughter, that is how much I love her and thank God everyday she is apart of our lives) during those first few weeks of surgery and more testing. My son did well but it was hard for me to not be in charge of his care, he was now a young man planning his wedding and living his life the way HE wanted…that was hard for me to swallow but I had to, I know longer was the person to tell him what he MUST do. In May of 2008 he had another surgery for the Melanoma and had to have Lymph nodes removed during that surgery. As a parent, it was the most horrendous feeling in the world not being able to protect your child from the horror of this disease…I remember many days I cursed GOD for allowing this to happen to my son, I yelled and screamed, begged and even bartered that if HE  let my son live I would go to Church every Sunday, I would be a better person…I did all the bargaining I could think of and yet I knew it was not about that at all, it was the hand we were dealt and I needed to accept it and find my spot in life again. I was also going through some very difficult health issues myself but they were secondary to my sons health.

I met james in Feb 2007 and knew on our first date he was going to play a very important role in my life. He talked me through the bad days and held me tight and told me he would always be there for me. That was a hard time for me because I was going through a rough time trying to deal with why the men in my life always left me…I eventually spoke to a counsellor about it and she pointed out a very important fact, they did not LEAVE me, they died, I then needed to put that into prospective and get on with life.

James’ first grandson was born in August of 2007 and we couldn’t have been happier, I do not refer to him as a step grandson because to me he isn’t, he is OUR grandson. It was a very joyous time for us as many events were taking place including the marriage of my son in Nov 2008. It was a wonderful day marred only by his father not being there but my son made sure he was apart of his special day by having a dance with me to my husbands favorite song, “What a Wonderful World”. I cried out of sheer pleasure my son and daughter-in-law made Ron apart of their special day.

My daughter got engaged soon after my sons wedding and in August 2009 she married her long time love, Mike. Her wedding day was just as special and wonderful as her brothers but it was harder in that her Dad would not be there to walk her down the aisle. It was a difficult time filled with just as much laughter as there were tears. My daughter decided she wanted her brother, Michael to walk her down the aisle, and what many people didn’t know was that she had a picture of her and her Dad pinned to her Garter belt…so although he was not there in body, he was in spirit. When I saw my son and daughter come down the aisle arm in arm, I cried…it was simply the most poignant moment of my life…I have never been as proud of my kids as I was on that day.

November 2011 my beautiful granddaughter, Lily Marie was born…I was overcome with a love I have never felt before, my life, despite my many health issues couldn’t have felt any richer than it was. Lily is the reason I get out of bed everyday, she is the reason I fight so hard to get well, she is my shinning light at the end of a very long dark tunnel on my worst days…she is what gets me through those days. I don’t have any great words to describe my love for her only that it is truly indescribable.

James’ daughter was pregnant with her second child, due Sept 17, 2012. We went out for dinner with them on Sat Sept  8th and joked about her going into labour in the restaurant! She had a couple “ouch” moments that we all put down to a spicy pizza, Thai chicken fingers and chocolate cake! Well what we didn’t expect was at 1:30 am we got “the” phone call that she was in labour, 8 days early! We headed to the hospital around 9 AM thinking the baby would be born by noon and everyone would relax and celebrate his birth, didn’t quite happen like that! this little guy had a different plan in mind!

When James and I arrived at the hospital we were  asked if we would like to go into  her room to give her a hug and wish her well. We went in and she was just in the midst of a contraction which was hard to watch but I was hoping I could be apart of this special day. James couldn’t bear to see his daughter in pain so he hung out in the waiting room! I kept going in to see her and see if she needed anything and she asked me to stay…I was over joyed…I took my que from her Mom, (whom I might add is a very dear friend, some find that weird that we would be friends but to us it’s not weird, its wonderful we can be close and laugh and cry about our children and who is up to what) as to how to help her through the contractions. I was in awe of this young woman, she was totally focused during her contractions…I would hold her hand and tell her to find her focus and her Mom rubbed her shoulders and told her to relax and her husband was rubbing her feet and telling her how brave and wonderful she was…many times throughout the day I looked around the room and was so very humbled and grateful I was apart of this very personal intimate event.

As the day was progressing and she was having a difficult time, we encouraged her to do whatever she needed to do to get through the labour, we told her not to try to be a hero by not having an Epidural, if that’s what was going to help her get some rest and be more relaxed and able to do the hard work for the labour, then take the advice of us and the nurses and form her own opinion. Being in the room was so very surreal to me…I felt apart of a very big moment in their lives and the fact she wanted to share that by wanting me to stay in during the delivery, was the ultimate pinnacle for me.

As I started this blog out by stating I have led a full life at just 51, this moment was a moment I never expected to be apart of. I have never witnessed the birth of a child and I can say in all honesty, it is literally one of the most poignant moments in my life. The love in the room those last few hours was so heartwarming and wonderful. Things were happening fast those last couple of hours and the reality of watching the miracle of birth was just starting to hit me…I was giddy with excitement as well as scared to death I would pass out!! We all took our prospective places as the moment drew closer, we were all beyond excitement and were in sheer awe of her strength. The nurses were doing their jobs helping her through the labour part and the Dr then joined the room and was so awesome with her, cheering her on and telling her what a wonderful job she was doing and soon her son would be born. I quickly ran out to James and told him it wouldn’t be much longer now, poor guy had been sitting on his own for nearly 8 hours and he just needed to hear his little girl was doing fine…

It was now time to have a baby!!! Excitement filled the room in the form of tears as we watched this beautiful little baby enter this world with a very healthy cry! To see the joy on her and her husbands faces is a mental image I will never forget. Her Mom was beaming from ear to ear…it was such a magical moment…

I can’t thank her enough for asking me to be there celebrating that most private momemt…For all that I have gone through and all I have yet to encounter, nothing will ever be as special as that moment. Life can be so hard at times but then you witness the most magnificent moment in anyones life, the miracle of birth, and somehow all the crappy moments melt away and you focus on what is truly important in life, family…My life is definitely richer with James’ family being such a big part of my life…

Thank you my sweet “daughter” for sharing the birth of your son with me, you have warmed my heart beyond words and I love you more than you could ever know….

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Round one may have gone to Mesh, but all the other rounds are gonna go to ME!!!

It’s been a bit since I have written and so much has happened its time to settle into a blog about Mesh and life.

I had my bladder surgery June 21/12 and am still trying to recover which is proving to be more difficult than I had expected. It literally has knocked me flat on my back which I don’t think I fully understood the recovery process until AFTER the surgery was done! Maybe that’s something I should have looked into a little further so I would have been prepared and I guess what I have learned from this is be educated and prepared for anything that can happen, usually will happen.

Mobility has been a huge issue for me due to pain from the surgery which is already in a “delicate” area and then having 2 bum knees has certainly not helped at all. I have for the most part been house bound which I am not liking at all but I am trying to find my patience which is NOT my virtue. So I am having to dig deep and tap into the patience I know is in me somewhere!

I just went through a really bad bladder infection which landed me in the ER and then 5 days of IV antibiotics as an outpatient. I am very limited to antibiotics because of my “Multiple Drug Allergy” syndrome so when I have antibiotics, they have to be given to me by IV in a “controlled” environment. It was a horrible 5 days as the medication kept building up and building up so each day was worse than the previous. I was having violent headaches, nausea, vomiting, diarrhea, fevers, rashes and complete exhaustion. I finished two days ago and now we are waiting for the test results to hopefully show the infection is gone, if not, its back to the hospital I go.

During all of this I saw a new Dr, a Rheumatologist. She was by far, hands down, the BEST Dr I have ever had the pleasure of meeting! She was very personable, listened to me, read through all the paperwork I gave to her, she was compassionate and kind, she made me feel like a person, not a mesh number assigned to me by who else, the medical profession. She spent 2 hours with me and one full hour was a physical, I have NEVER had a physical like that in  my life to date!

She has confirmed 2 disease’s and has ordered so many blood and X-Rays I swear it will take me a day to do! But, if they are going to point us in the right direction to getting me back on my feet, I am more than happy to be poked and prodded! She has already told me she has no issues with writing whatever letters I require for various “financial” aides that are available to disabled people who she said unfortunately I do fall into that category. I am thrilled she is on board with all of the unresolved issues and hope that the “powers that be” listen to what is true and do the right thing!

I have been filled with anxiety lately which is directly attributed to my health issues…I am trying to find my “zen” through Guided Meditation CD’s which are helping a bit. Finding peace in your life when it is clearly “meshed” up is difficult because it is easy to slip into the “whoa” me category even though you clearly do not want to feel or be like that. It takes a lot of discipline to try to stop it before it happens and even more discipline to get back up when you have slid down the wrong side of the mountain.

I am lucky to have such wonderful people in my life…my kids are hands down the best…I try not to tell them to much as they worry but my daughter has a way of getting it out of me and then she worries herself sick. I would like to give a HUGE shout out to some very special people in my life who over the course of the past week have helped me through my IV treatments by driving me back and forth to the hospital, picking up groceries for me, making me chicken soup, making sure my tomato plants don’t die and listening to me when the fear took over! So a huge THANK YOU to Cindy, Sara and Carrie!!! you guys are awesome and I could never repay you for all that you have done…You guys are awesome and I hope that one day I can do the same!

I am really looking forward to next week, James is heading home and I can’t wait! I really need to be with him right now, he inspires me to keep fighting and to never give up HOPE. He also makes sure I eat properly by way of his funky green and orange protein drinks! Ok, maybe I am not looking forward to that part but it comes from his heart and its his way of making sure we are covering all bases, so as much as I complain about his concoctions, I do drink them…

Despite all the crap in our life with Mesh, we are anxiously awaiting the arrival of 2 new babies to the family!!! We can’t wait for the birth of our second grandson and the birth of my nieces baby boy!

When you are in a world of turmoil you have to step outside of the turmoil and be thankful for all that is in your life, you can’t let the turmoil take over your life. We have many many things to be thankful for and although mesh plays a huge role in my life right now, it is not the only role…its up to me to make sure I am conscious of that on a daily basis.

Life is what you make it and I refuse to make my life about MESH…I write about it, I advocate and educate it but it is not WHO I am. I am a woman very much in love, I am a Mother who would go to the ends of the earth for my kids, I am a Nana and that is the best “hat” I have ever worn, Lily is my reason to fight so hard, she is the brightest light in my life, I am a friend which sometimes not a very good one when I am trying to just get through the pain, I am an Aunt who loves all of her nieces and nephews to death and most importantly of all, I am a FIGHTER and that will never change…

 

 

 

 

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A massage, Lily, and a dam good cry…it’s all good…

Today was a day that started out being very excited about my Massage apt, oh how nice it is to have someone release your muscles from one big ball of pain!

Last week I decided I needed to work on not only the physical but also the emotional and spiritual side of me. I have come to realize that to have harmony you must create harmony within you body. So I  went to a new Massage/Reiki/Spiritual Advisor and she did a treatment on me that released some pent-up anger I have been harbouring. I very much enjoyed it and came home relaxed, rested and rejuvenated to begin my new path in life.

I believe in trying any sort of “treatment” to find a balance in my body that is acceptable. If conventional medicine cannot provide that for me without prescribing narcotics, then I need to look elsewhere, being drugged out of my mind is not an option, for me. Today I continued on my quest for peace within myself.

I woke up this morning feeling quite nauseous and was annoyed because there was no way in hell I was cancelling my 90 minute session! I mashed up some ginger into a paste and downed it with a glass of water and off I went. I have issues of panic attacks in my life which for the most part had gone…recently I started having them again and I couldn’t figure out why and they are really interfering with my daily living. The thing I got from last weeks session was I went 6 days without ONE attack! I was ecstatic! Then this morning I woke up and BOOM, in my face anxiety! WTF is all I could muster, this is not going to stop my treatment. I marched off quite annoyed at the whole world to be honest and very angry that my patience is still being tested.

When I got to my appt I discussed this with my massage therapist and she said she would talk to me throughout the session and teach me some breathing techniques…she also disclosed to me that SHE suffers from panic attacks as well! Are you kidding me! BONUS! She lit SALT rocks and placed them through out the room, the fireplace was aglow, a fountain was softly flowing in the room somewhere, there were candles lit and ocean and whale sounds were being filtered through out the room…It was perfect, a little piece of heaven in Ft. Langley, I felt blessed to have found this place.

She started by asking me to release the “anger”, let it go, you are in a safe place now, no one can hurt you here, breathe through it and let it go…we did deep breathing and I started to relax, just a little…then she said to me, “Diane, think of something or someone who fills that empty spot in your heart that you have kept in you for so long”…and with that, she placed a picture ( I brought one with me) of Lily on the floor so I could see her… I looked into her big beautiful blue eyes with her cheeky grin and instantly the tears welled up and the flood gates opened as I started to cry, a raw cry that came from the pit of my gut, I was heaving with tears and pain and I just let it go…I sobbed and she just let me…it felt like forever but the amazing thing is I did not feel stupid, I trusted her with my fears and I felt “allowed” to just let it be…She did not judge me by my tears, she did not judge me by my pain, she simply let me cry…

I am crying now…the tears are running down my cheeks and the pit of my gut is turning…I have so much pain in me and I didn’t know it was affecting me this much. I am a person that DOES cry, I don’t hold it in but this today was a different “letting” go…It came from anger and betrayal, it came from mourning, not mourning a death but mourning  the loss of my health. I just needed a safe place to do this and it came in the form of a woman who knew what my heart was feeling and how badly it was aching…she tapped into my pain and gave me permission to see, acknowledge it and then let go of it…she said, ” if you let it, it will strangle you, you have the power with in yourself to take back control of your life” and I, in between sobs, agreed it was time.

I am not saying that from this session today I am “healed”….but what I am saying is I have to find a place for my pain and I have to find a way to deal with it. I have to figure out a way to get to “know” my pain and not let it take hold of me…If I can figure that out then I think half the battle will be won. Pain is not going to stop me from living my life and most importantly enjoying my life.

She also told me that I have a very big heart and sometimes I give to much of myself to others and I don’t look after “me”…I told her it felt selfish to do that though…she quickly jumped on that one with, “being selfless is not being selfish, once you figure out the difference between them, you will know the place in your life you need to apply this to”.

I felt a stong connection with this woman today and I know I will continue seeing her and working through my issues…I dont want to feel this mad, angry sad pain anymore. The pain from the mesh and countless surgeries that I have had and for the ones I still need to have is different, it is a physical pain but somehow along this 3 year journey I have let the physical pain transcend into emotional pain, it’s now time to take that back and work with figuring out how to live with the physical pain and how to work with the emotional pain…I will not allow either one of them to take over me again. It’s too easy to slide down the hole you dig for yourself and its twice as hard to climb out of that hole and find peace again. I think this is now my new daily journey, being in tune with my body on such a deep level I can tap into it and instantly figure out which pain is hurting me and stop it in its tracks.

Seeing Lily smiling up at me today just melted my heart, she is exactly what I needed in my life, I couldn’t ask for a better blessing…

May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love.  It is there for each and every one of us.

I leave you with this;

 I choose….. to live by choice, not by chance. To make changes, not excuses. To be motivated, not manipulated. To be useful, not used. To excel, not compete. I choose self-esteem, not-self pity. I choose to listen to my inner voice, not the random opinions of others. I choose to be happy rather than sad. I choose to not have regrets but rather learn from my mistakes. I choose to be a lover not a fighter. I choose to live my life-like there will be no tomorrow.

 

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I am walking through the “mesh” and into the Light….

A couple of days ago I had a very interesting discussion with someone. I promised this person I would not divulge their identity  and I wont but I feel the need to share this most wonderful insight.

I have come to realize that I must re-connect with myself physically, emotionally and spiritually because for quite some time now I have been very unhappy, sad, tired, angry, resentful and living in fear. I fear what tomorrow will bring..more pain, more frustration, more anger…well, if I choose to let it then yes, that is what WILL happen. I have the choice to make all my tomorrows better or I have the choice to live with all my yesterdays being unhappy. It’s in my hands.

I am a person who believes in “principles” and righting every wrong done to me… I must be able to  justify, validate and fix everything at the expense of my own health. . What I don’t take into account a lot of the time is that by working through this tiring process, I am robbing myself of all the joys and blessings in my life. I need to find a balance that allows me to deal with the wrongs of my medical device and the Manufacturer’s blatant disregard for me as a person but also to take all the blessings that are in my life now and put my energy into loving and embracing all that I DO have, not what I DONT have.

I was asked if I feel like I have contributed myself to others in this life and I can honestly say YES, I do believe that I have done some amazing things but I don’t like to celebrate them…I was told to “own them, take pride in them, take pride in you as a person, you are the one blocking yourself from moving forward in a positive way, you have the ability within you to continue to do amazing things with your life, but if you keep living in your past who will never get to live your future”. Wow, I did not see that coming!

I realize that I have a lot of “stuff” to take care of yet,  but while doing that I must also remember to live in the “now”. I will right my wrongs and I will continue to Advocate and Educate on a cause very passionate to me, I will not be silent on that front, I will not “go away”, however having said that I have a future and it is passing me by…My intention on this crusade was never to let it own and define me and in the past few days I feel that is exactly what has happened.

I have learned a lot about myself these past few days and realize that most of what is happening to me is “manageable” as long as I take the fear out of it and move forward in a positive direction. My reasons for staying in the present are right in front of me and sometimes I forget that and get caught up in my pain. Lily is my biggest reason for moving forward, she is a blessing that came into my life and I can’t describe the love I have for my little sweet pea…I have never known this type of love, it is so different from any other kind of love…she is my light at the end of my tunnel and as long as I focus on the end of the tunnel I WILL get there…

My kids are amazing people, they inspire me beyond words, they are both such inspirations to me as I see them take on the world with so much zest for life. I love you guys to the stars, the moon and back again, always and forever…James is a man who came into my life when it was at its worst and yet he makes me laugh so hard sometimes I cant stand! He pushes me to be more and do more, he doesn’t allow me to get stuck in the “mesh world”..he tells me to “fight for justice but in doing that you must remember your other passions in life, do not let the mesh rob you of the people who love you so much, let your guard down and let us help you”. I am doing that now as I walk this new journey…

I have had an amazing life so far, and when I was asked if I truly understand that I didn’t know what to say…I was told that I need to “own it and take responsibility for the amazing things I have  and be proud of how far I have come in the past 8 years and stay on a positive path of not only righting wrongs but loving and embracing life by living in the moment”. That I can and will do…

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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I just can’t wrap my head around MESH and yet it has wrapped itself around me…

I’m sitting here after midnight still trying to grasp the last couples days events. It doesn’t seem real or acceptable to me that I should be put in this position but it is what it is, for now.

I have been through a lot of crap in my life and the one pattern I have come to notice is that I have not had control or input on any of the events. I have had to figure out how to deal with everything and still be a wife, mother, bread-winner, sister, aunt and friend, but my biggest role was being a caregiver and nurturer to my husband during his 6 year battle with Brain Cancer.

That was my toughest role because I knew that I would be helping him transition from this life to the next. He was a man who didn’t ask for a lot in life, he was content with his family and playing golf.

When he was diagnosed with Brain Cancer we were told he would not live beyond 2 years, he proved them wrong and lived for 6 years and I believe it was the love of his family and friends but most of all his children who inspired him to defy the odds. Everything possible would be done to make him comfortable and it was always his call if he wanted to stop treatment. I think he endured more than his fair share of treatments just to keep me happy…I never asked him but I have always wondered if that were the case.

The interesting thing about the whole situation was that I felt in control and for some odd reason I felt like this was the hand I was dealt and I just had to figure out how to live it. Amazingly I did and I know without a doubt in my mind that I honored all of his wishes.

So, if you can tell your best friend and soul mate it was ok to leave you and give him your permission…then why the hell is it so damn difficult for me to wrap my head around the whole mesh mess??!! This is not the worse thing that has ever happened to me, I have endured more and come out much stronger and yet I am struggling so much with this mesh. The worst thing was lying in the hospital bed in our home rubbing my husbands forehead and watching his kids hold his hand and tell him how very much they loved him and would miss him and then watch him take his last breath, that was my worst nightmare come true…

I, for the life of me, cant figure out why it is so difficult to have our voices heard, to have the corporate world, the medical profession and the Manufactures of the “devices” implanted, hear our plea, put an end to the un-necessary suffering by any man or women due to mesh implants. Is it me raising my expectations to an unattainable level? I honestly don’t think so, I believe in my heart and soul that if this were to happen to one of the wives or husbands of the professionals I named, you would certainly see heads roll and things change in a huge hurry. So why is it we the suffers cant get the same action?

I have said from the very start of this mesh journey that we are “The Failed Mesh Experiment”…no different than the Thalidomide children of the 1950’s and the Agent Orange victims. There was never any human trial testing on the mesh devices which makes us the test subjects. So I feel that it is my responsibility to Advocate and Educate on the dangers of mesh. Should I be in this position, NO, to me I never had “Informed Consent” with regards to my situation but I want to make damn sure that anyone I know who is contemplating this surgery do their research and do not go blindly into the surgery. You owe it to yourself and your loved ones to be informed and make your decision based on the information you have gathered.

As awful as this sounds and it breaks my heart to say this, having Cancer  (I in no way mean to take anything away from the people who are fighting a Cancer diagnosis at present)  is a walk in the park compared to this. I do not say that lightly either, I say it from experience and lets just leave it at that. With Cancer you have statistics coming out of your ying yang, you have all the “medical professionals” in place, you have counselling at your finger tips, you have family and friends who understand to a certain degree what you’re going through because I would venture to say there are very few people who have not been touched and affected by Cancer at some point in their lives. The sad thing is Cancer is no longer the “C” word, it is just apart of our every day living, it has almost become a “norm” for most families. That cannot be said about mesh and yet there are people who are dying from the Mesh devices implanted in them.

We, the “MESH” people have nothing in place in terms of support groups, counselling or even Doctors and Surgeons who believe in our plight because there is simply not enough evidence to support the fact that mesh CAN and WILL make your daily living a literal living hell. Mesh is not a “visible” illness so its easy for people to not take you seriously when you give them a list of your symptoms, instead you are looked upon as being mentally unstable.

Trying to find the “professionals” who will support you and actually help you in your quest for total removal of your mesh device is next to impossible. There are very few skilled Surgeons, especially in Canada who will take on the dangers of removing the mesh. Is it not ironic that they have no problem putting in a mesh device but when you want it out due to the fact it has eroded your vaginal wall or you have 15 or 20 other complications from the mesh,  there are very few Surgeons who will step up to the plate and actually work with you to do their utmost best to get you the help you need whether it be surgery, pain management or physio, and yes believe it or not there are actually qualified physiotherapists who work with you to strengthen your pelvic floor muscles….that just sounds so wrong to me as I can’t fathom going to a physiotherapist to be trained on how to strengthen my vaginal muscles…as if I havent had enough dignity and pride stripped away already now you want me to go to a complete stranger to discuss my privates??? WTF is up with that? That’s another issue I can’t quite wrap my head around.

My life has been completely turned upside down since my bladder surgery in Dec 2009 and I feel violated and alone because I cannot openly discuss in any public forum or even on my BLOG what the mesh has done to me. I have to be careful I don’t name “Manufacturers” because it can be taken as “slander” which would jeopardize my lawsuit. So now not only have I lost my dignity and my pride, I have lost the right to freedom of speech.

Will I ever step back and out of the public eye of “The Mesh” war, NO, I have found a cause that I am so passionate about that I will make it my life’s mission to spread the word about the dangers of “polypropylene” mesh.

For now I need to sleep, I feel like I have gotten a lot of the demons out of my head but I also know that with every new day comes a new fear of the gravity of what the mesh is doing to my life, physically and emotionally. I just need to learn how to live in this moment and enjoy the blessings I have and not what I am missing or may ever have.

My BLOG is my sanity at present, it is a place I can openly ( to a certain degree) share my fears with anyone else travelling this road and we can laugh and cry together and hold each others hand on the days you struggle to keep it all together.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength”

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Dont even try to tell me there’s nothing else because I refuse to believe that….

So, I feel somewhat calmer today since yesterdays 5 week post-op Surgeon appointment. I wanted to write last night more than I have ever wanted to write but I knew I couldn’t… I was too angry, to tired, to scared and way to emotional to write about what has consumed my life in every sense of the word…MESH

I have had a feeling for the last 2 weeks the apt would not go well…it stopped me from sleeping at night and when I did sleep it terrorized me with “Night Terrors” and penetrated my body with the raths of panic attacks…it made my mind go crazy during the day and crazy at night. I have been running or trying to run from the mesh now for months and months and I can’t escape it because the mesh has become me or I have become it…I’m not saying it defines me as a person but it does shape and mold my life right now with endless medical appts, new specialists, tests, pills, and fear. When will it ever end, I’m not sure it will and that is not me being pessimistic it is an unfortunate statistical  fact.

I have been advocating and educating for the past few months trying to get the word out about mesh…I have been lecturing women on the dangers and simply asking them to read the different BLOGS out there on the complications of mesh, I have told them to make sure they are INFORMED about MESH BEFORE they elect to have it done. I have never told a person NOT to have the surgery, I have just asked them to do their homework and research and then after all of that, if they choose to go ahead, I know that I done all that I could.

My main concerns going into the apt were basically, “what if there is nothing else” and that is exactly what happened. I was nervous about the drive to the office as it was out of my comfort zone when it comes to driving but I knew I had to just take the bull by the horns and run with it…I’m a big girl now so act like one…that was my thought the whole way there! I ended up being about 2 hours early but funny enough, there is a shopping mall right across the street from my Surgeons office, how freaking convenient is that!!! I decided I would check it out although I knew I would pay for it later as walking is very difficult when you are in pain but I was determined and it paid off, I came out with 4 beautiful skirts!!! Didn’t even try them on, no time for that and anyway the sales lady assured me they were “one size fits all”…I can’t for the life of me figure out how that works but I didn’t care, I bought them anyways, they are pretty and will cheer me up on my yucky days.

So its time to head over to my Surgeons office, butterfly’s in my stomach, a nerve rash on my chest and on the verge of a full-blown panic attack…breath Diane, breath…The Doctor came in and asked how things are, now THAT’S a loaded question! …I tell him all about the problems I am experiencing and he seems surprised and said something to the effect of, “well we had hoped for better than that”. Ya think!!! He asks me whats been happening and I tell him and he  really didn’t say much at the time, there was an odd silence in the room and I didn’t like it one bit. He commented that I was healing well but to still be careful as I am only 5 weeks post op.

I, at this point,  decided it was time to ask my questions and challenge his answers if necessary. You have no idea how much I hate confrontation but when you have been physically and emotionally challenged by MESH, you’ve already lost most of your dignity and ALL of your pride. First question, how much did you get out, he told me the amount and then I challenged him with this question, “So, if the mesh is say 6cm in length (this is purely a guess on my part so don’t take it for anything more than that, I truly don’t know the size of the Mesh device I had implanted) and you got out say 3cm, where is the other 3cm”? Does that not seem like a logical question? I thought it did but I knew the second the question left my mouth and was out there, there was an icy cold feeling in the room. Dr asked me to clarify question, raised eyebrow and a somewhat discerning look on his face which I took to mean, “how dare you challenge me”. Oh well! Shit happens! He said something to the effect of, (and don’t quote me on this) well it is embedded or become apart of your muscles and tissues”. Oh really! So how do we get it out…we dont. Huh? WTF? Why not? he says he did not get the mesh from the Obturator Foramen and will not go back in to get it from there as it is to dangerous, too many blood vessels. It will always be there and will eventually degrade into the surrounding tissue. Ok, this conversation is not going in the direction I wanted it to go. To be clear I said, “So this is it, you removed what you VISIBLY saw but you will not look for more”? and the answer was, “Yes, that’s right, I will not look for it and I will not attempt to get it from the Obturator, I am not skilled enough to attempt that”.  It’s out there now, the one thing I feared the most was just said out loud and not out of my mouth but from the one person I never wanted to hear it from, my surgeon.  

I sat there, mouth open, thoughts scrambled, not sure what to do next…I think I said something to the effect of, “So now what”? My surgeon said he is pretty sure I have nerve damage causing the extreme pain so he has sent a letter to my Dr stating we need to get on board with “pain management” now. Are you saying I need to be on NARCOTICS now? Yes…Oh, but I’m not sure that’s what I want…well, it you want the pain to subside this is what you need to do…hmmmm…not sure what to do with this tidbit of info…I’ve parked it somewhere in the recess’ of my brain for ow to be retrieved at a later date.

So what about the reconstruction surgery we had talked about doing seen as my original problem is now worse than before the THREE bladder surgeries…Surgeon says to me, “we will re-visit that issue in the fall”. It was very apparent at this point that he was finished with the conversation and I was being dismissed. Well, I was not done yet and I sat in that chair and made it very clear I wanted more answers, I was not going to be dismissed until I felt ALL my questions were answered, to my satisfaction. Bottom line is at this point there is nothing more he can do for me other than offer drugs and when the Mesh does migrate again, then we will go back in and take it out. Oh, you think you will huh…well I think MY plans are different, in fact I am DAMN sure they are.

I think back to the day this all started, Dec 2009, and wish I had researched my options more. I am the first person to always say I don’t live with regrets, everything is a “life lesson” and now I had to eat my own words because the MESH WAS and will always be a huge regret in my life. Yes, I can help other women, I can advocate and educate until the cows come home but it will never give me back what I so dearly want, my life, pre-surgery.

I went from having a “routine” operation to a life that is like a maze, you just keep going around in circles never quite knowing where the end is or if there is an end. I feel like I am chasing the elusive “pot of gold” at the end of the rainbow and yet it is not the gold I want, it is just my pre-mesh life.

Do I give up, HELL NO!!!! I am too damn stubborn for that…that is one of my most endearing qualities about myself that I pride myself on, you can knock me down, kick me to the curb,  stomp on me but you will never stop me from fighting, from digging deeper into my soul to *fix* this. That is just who I am and I am more stubborn now than ever before because I have my beautiful Lily to chase around and laugh and play with. Lily is my reason for getting up every morning and fighting through the day, I love her so much and she is such a shinning bright star in my life.

 Am I still mad, you bet I am and interestingly enough it is when I am this outraged that I do my best work! I have already started looking for “new” options…this is not the end, I refuse to live the rest of my life like this, I will not be discarded and tossed aside. I just need to get my wits about me after that apt and then I know I will start researching whats available to me. It will take time and I will get frustrated, angry, sad, tired, but for each of those moments I will look at Lils picture on my table and know that I have to find a way to fight through this so I can be apart of her life as the hands on Nana I have always envisioned I would be and I WILL be that Nana, mark my words….

Out with the MESH Diane and in with the new Diane!

 

 

 

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