I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Mesh is my pain, but courage is my freedom….

on January 2, 2013

I wasnt going to BLOG so soon in the New Year mainly because I didn’t want it to sound like I was whining, yet again. However after todays events I need to get this out of my head.

Christmas was as expected hectic, tiring, anxiety ridden but wonderful. My eyes were opened to the reality of how Mesh and Lupus have affected my life but which I have always thought I had under control, but that little fact was quickly shot out the window. I found that James and I were having to choose what events we could attend and what we couldn’t. If we committed ourselves to a function, it required a minimum of 2-3 days rest on the couch for that one event and invariably after the event I was back on the couch for a couple of days. There were some events I couldn’t even attend leaving James to go by himself and give my best to everyone.

Christmas was also different this year as  I couldn’t get out to shop so I had to do online shopping, it was fun initially and then it was sad and I cried a lot as the presents showed up at my door. James and I used to love going Christmas shopping together and the old Costco run was even enjoyable, go figure huh…I know that sounds weird but when you can’t do something you’ve done before, you realize that whatever it was you couldn’t do, was actually very enjoyable, we just never realized it at the time.

I don’t think there was one day in Dec that I didn’t cry because I was so overwhelmed with the anticipation of the big day and the reality of my current situation. I was excited to see the young ones awaiting the arrival of Santa and Lily even sat on the “big guys” knee and had a smile on her face!!! Lily doesn’t care who holds her, she just loves to interact with people and its wonderful. I had moments of feeling guilty I couldn’t do more or help more with all the work that is involved in hosting Christmas dinner, my sisters prepared a fantastic meal for 22 people. I wanted to help but I couldn’t, Lupus had kicked into high gear and I was on the couch. I thanked them both for all their hard work and apologized for my inability to help. My one sister held me and said not to apologize for something that was out of my control. We both shed a tear and held each other tight.

My kids have always spoil me at Christmas but this year it was different, they still spoiled me but the thought that went into the gifts they bought made me realize my kids had become adults and felt and understood my pain. My daughter bought me a journal, not a normal one either, it is a journal about trials and tribulations of life. The Journal is called “It’s gonna be ok…a journal to reassure myself when I’m overwhelmed by the creeping sense of impending disaster and the all-encompassing fears both specified and vague that colonize my mind, my body, and soul, all of which, from the completely far-fetched to the sometimes probable, do me no good to contemplate and in fact make me miserable, and even though optimism may be unself-aware and ill-paced, I know I’ll be happier as a blind fool than as a clairvoyant apocalyptic”. Each day has a Quote to motivate you to see and think outside the box that you have built around you, it is a challenge to me for sure because when you are fighting so many battles, it is so easy to get lost in the battles and not find the joy in life, and there truly is much joy in my life. My son bought me a lovely lavender neck wrap, it’s so plush and smells wonderful and each time I use it I will think of my son with love. I can’t even name all the gifts they spoiled me so much!

Our Christmas gift from Lily was the best, my daughter had an ornament for each of us made and, one was for Nana and one was for Grampa, and engraved with “Love Lily”. We put them on the tree and I shed a little tear because this beautiful little peanut brings me so much joy, even when I am not with her and I get a text message with a picture of her, my heart swells with love. She is the best part of my daily living, the innocence of a child truly does make the heart better.

Everything the kids bought was with my health in mind and that alone made way for another round of tears. I can’t believe how much thought went into each gift, I was and still am humbled beyond words. There is no price tag you can put on love, it comes from the heart and there was much love sent my way.

As hard as Christmas was, I enjoyed it thoroughly but to be quite honest I was also relieved when the season came to a close. By New Years Eve I could barely get off the couch and was quite content to stay home with James and just relax with a good movie. We enjoyed the quiet of the day, lazing around in our jammies doing absolutely nothing….ahhhhh…perfect as far as  I was concerned.

With New Years comes the task of making that New Years Resolution, I swore I wasnt going to make one but as previously blogged about being thankful everyday for one thing that happened that day to warm your heart, I started my “I am grateful for” beautiful glass blown vase.  Each day I will find the good in the day and write it on a piece of paper and put it in the jar and then on  Jan 1, 2014 I will take a piece of paper out of the jar and read about that day. I am very excited about this project because I feel myself slipping into to many dark days and am worried that I am not finding the joy in everyday.

So, New Years is here and what can go wrong, its only 2 days into the New Year?! Well, to answer that question may involve some curse words and definite ranting. As you are all aware I am still in the midst of my ongoing fight with CPP Disability, so when I went to the mail box today and there was a letter from them, I got all excited thinking it was my much-anticipated decision! Boy, was I ever wrong! Apparently ALL my personal information affiliated with my claim has been compromised! The letter states that a USB device was lost by an employee and on the USB was my SIN number, personal information and all medical records just to name a few. WTF are you kidding me!!!!

They have advised me to check all my credit cards, my bank account and credit score  to make sure there has been no identity theft and then file a police report. Lets just say that I didn’t need to turn the heat on in my home today, I was the HEAT after I ripped some poor girl a new arsehole (as James puts it) as to how this could happen. I commented that I hope the employee responsible has been adequately reprimanded. I was then told that she could reveal any information regarding this issue as it was a matter of “her” privacy at stake! Really I said, but you don’t give a shit about MY privacy apparently because if you did, this would not have happened! Now MY personal information is floating around out there somewhere! Lets just say that this is not the end of that issue, if they thought I was a bitch on the phone today, it will only get worse if anything does come of this.

So, that was this morning and by noon I thought ok I have adequately dealt with that issue for now so I made my self a cup of chamomile tea with the intention of resting. Wrong again! My financial planner then called to say that things were not going well with my investments and we will have to do some serious damage control to ensure my monthly income from them investments will still be available to me. I don’t work, I retired due to my health issues from Mesh, I am by no means weathly but the monthly income afforded me the luxury of not worrying about paying my bills and mortgage. That is all in jeopardy now and if we don’t get things under control I may have to sell my townhouse within this year…ok, now I felt the slap of reality upside my head, shaking and scared I asked my financial planner if there is a way I can get the “locked in” portion of my investment “unlocked”. He said yes there is but there is a mountain of paper work to be done but because of my health issues there shouldnt be a problem. I can’t take the whole amount as a lump sum but we can access the allotted amount for the year and turn it into a monthly pension. We should know more within the next 2 weeks, which I am sure will be the longest 2 weeks of my life…if the answer is NO, then I am forced to sell. It’s not entirely a bad thing though as the stairs are really becoming an issue and the thought of being in a smaller place is appealing, however I will miss my home…i dont do well with change, I like routine but I think this is one issue I am not going to have to much of a say in.

If anyone had told me just 3 years ago I would  be going through this hellish nightmare I would have laughed at them! Some of it I still can’t quite comprehend as it is so overwhelming some days I just have to find a way to be still and let my mind shut down for a few hours to get some rest.

So Christmas has brought many challenges with it as has the New Year but amongst those challenges there have been many many acts of kindness and love shown my way. I received a card in the mail today with a note from my niece stating she is giving me an hour-long massage treatment through Traditional Hawaiian Healing and Holistic Bodywork. I cried when she stated of all the people she knows I am the one who will appreciate it the most, and she is so right. I need to find ways that are going to enhance my life, not suck the life out of me. My life feels completely turned upside down right now and I need to get it back under control and deal with the ups and downs. I CANNOT and WILL NOT let mesh take EVERYTHING I know and love away from me. I must find my inner strength and find the courage and conviction to fight back with all I am and all I have. I am not a quitter, I am a fighter so if life thinks its thrown me a new curve ball that I can’t handle, well think again, now I am just plain damned pissed off!

There are days I cannot do anything but simply cry…I try not to but I think of my sweet sweet Lily and hope that she doesn’t know “Nana” as the one who can’t get down on the floor and play with her. I guess I have to remind myself that although I may have disabilities that prevent me from doing certain things, I am there in body and love her more than there are words. I then think of my kids, they have seen so much heart ache in their short lives, it is just not fair. They watched their father die from a 6 year Brain Cancer battle and then held his hands as he took his last breath…to much for young adults. Now they watch their mother struggle and I see them struggle with this new lifestyle.

I would also like to add that my Mesh Blog is more about the emotional tolls of Mesh and Lupus and not the factual research side of them. For me, this Blog is an outlet, it doesn’t always replace my tears but it does let my mind take a much-needed “Mesh Lupus” vacation.

“Be strong, be brave, be true. Endure”

3 responses to “Mesh is my pain, but courage is my freedom….

  1. Nonie Wideman says:

    I’m teary again my friend…we face so many similar struggles, and you have so many more challenges……KOKO…I bottle so much up and then your words make it all rush out….and then I have to deal with it and move forward…bless you we make a fine pair of long distance but much loved friends……


    • I love you like a sister…just becasuse we havent met face to face does not diminish the love…You bottle up and I have verbal diarrhea!!! Fine pair we make huh! love ya bunches….


  2. eleanor says:

    Diane I wish that I had as much courage as you to write down how I feel or better yet to talk about my feeling, the last couple of weeks I have been in such a dark place myself and I fight this emotion so much, not feeling good about myself, what do I have to offer anyone, etc…Terrence pulls me up out of these stupors and just takes care of me. After reading your blogs I realize I am not alone in this fight of emotions, pain, etc. Thanks so much for posting your blog it helps me immensly!!!!! LOVE AND LIGHT Eleanor You are always in my thoughts and prayers, the best of luck in the New Year!!


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