Joe is such an amazing husband. He has been so supportive. Joe began a fundraiser for my medical and surgical needs. We thought relief was in sight. My surgery in Florida was scheduled. Only 2 more weeks of living with the current pain, embarrassment, rashes, etc.
Even after a Peer-to-Peer with my surgeon, my health insurance company denied my surgery. I am doing everything asked of me. I am praying that in the next 2 days my appeal goes through, otherwise I have a long road ahead of me seeking other options. Another year or more of my life will be stolen from me, from my children. This is so painful emotionally. I am tired of living with daily rashes, pain, bleeding, burning, anxiety, etc. I was exited to begin a new chapter in our lives. Instead, more disappointment and stress. Praying an answer comes soon.
For now, I will pray and continue to fight.
I am sure Joe will also keep people informed on the site he set up:
Fundraiser for Elisa's Medical Needs and Aftercare
A husband wants to be strong for his family. My husband wears the role of "provider" like a cloak. He feels the need to provide, and feels unworthy when he feels he is not hitting the mark. My husband is an amazing provider. At the moment he is blind to this. At this moment he looks at his cloak and sees a dull, dirty, brown cloak. Not the bright, colorful cloak that he wishes to display. Much like a male Peacock, displaying his feathers, showing that he will make an amazing mate, Joe is an amazing mate. He is a terrific father. He is my everything. He is in a dark, shadowy place at the moment, that doesn't allow the sun to shine on that bright cloak. Instead, he sees brown, plain, and dull. He needs some sunshine.
We followed all of the instructions that have been given to us, step by step, to get to the end result of my having the BCIR surgery. We knew that I would not be able to live forever with a bag adhered to me, when I am allergic to the adhesives, and am an active individual. In December I had my ileostomy surgery, as requested by the BCIR team, prior to my BCIR surgery. I spent 9 days in the hospital, and arrived home on December 23rd. Now it is just a matter of waiting 6 months, and then I would finally be able to have my final surgery. My dreams of being pain-free and device free were in reach.
December 25th was Christmas. December 26th was Joe's 45th Birthday. Happy family moments, even if I was in discomfort from major abdominal surgery. December 27th our whole world was turned upside-down once again. On December 27th Joe was informed that his position at work was being cut. He was being laid-off. Health insurance would end. Joe would need to find a new source for a paycheck, and health insurance. I am currently disabled.
Joe has been actively looking for work since. Every single day. Hundreds of applications, interviews, etc. Joe is always thinking about our future, and how he can provide for us. Joe is a diabetic, and I am an ostomate. We both need medical supplies every day. We were able to get Medicaid. My disability hearing is still many months away, so we have no income coming in. What a blow to a man!
To add insult to injury, the hospital where I must have my surgery will not take Medicaid. Joe feels that if I cannot have this surgery due to lack of insurance, he is at fault. He feels as if he is letting me down. He is not. I tell him over and over.
People have told me to reschedule. In any other scenario this seems like a great option. This surgery is one that I had to fight for. Originally the BCIR hospital could not see the worth in my flying from New York to Florida for this surgery. I argued my case. I explained my symptoms and issues. I reassured them that I was a great candidate. If I cancel, they can decide not to take on my case again. It is very disheartening. Joe knows all of this, and he finds himself panicking, searching for a new position. He is so capable, such a hard worker, he would be an asset to any business.
I attempt to reassure Joe, that all will be O.K. I try to keep his worries down, and his hopes high, even when I am losing hope. I tell him that living with the ostomy bag for the rest of my life wont kill me, and I could try having a different surgery here in Rochester, to remove my colon (it is just detached for now) and relieve myself of the spasms and colon pain. Joe sees the bleeding wounds. Joe sees the rashes. He sees me attempt to hide every wince. He knows there is pain. The pain I can deal with. My quality of life may be decreased, but I can wear a mask for my children, and husband in order to hide the discomfort. I can let them see the me that I want them to see.
I would cry out in private. I would wonder when my break would come. This seems too much weight to carry. At times I would feel sorry for myself, and then I would remember, so many have it worse. I wipe away the tears and put the smile back on my face. Life continues as it has.
The last few weeks I have been brought to my knees in a way that I never have before. Seeing my husband cry. Knowing that he feels responsible in some way, angers me. I makes me made at myself. Seeing him hurt, makes me feel guilty, and weak. I have tried to always build him up. He is my rock. I attempt to be his. My husband is hurting. This is not fair to him. I do not want the surgery for me. I want the surgery for my children, for my family. I want the surgery for my husband. I have known how his past has hurt him, and I have vowed to protect him, to help heal him, and to provide him with additional strength. I am now sucking the strength from him. I feel responsible for his pain.
I hit my knees and pray. I research. I work hard for an answer. How will I be able to have this much needed and wanted surgery? How will I find the strength for my husband if I do not have the surgery? How do I heal what is happening in my home? Why did I have to be so broken. My broken self is now infecting my husband, and weakening him. I feel the pain wash over me, and I pray for answers. I try to stay strong. I try to be everyone's rock. Lately I feel like sand, slipping through the cracks.
Being home day after day following major surgery (I will write on the more in the future) gives my very active brain too much time to think at times. It likes to go in to overdrive. It doesn't help that I have such a good memory, and over 25 years later, I am left with memories, ghost of the past, still haunting me.
Each morning, now when I look in the mirror, I feel more of my "spark" fizzle. At first, when I saw the ileostomy bag, like with anything one might experience post-op (bandages, stitches, drains, etc.) my brain immediately processed it as TEMPORARY. You heal,and the bandages come off. It took me about 11 days before it hit me. It hit me Christmas night, like a bolder to the head.... This is not temporary. This is it. This is who I AM now. This is what I will always look like. All hope to be "fixed" another way is gone. I sat in the shower and sobbed until I had no tears left. My face was streaked red, but the droplet dripping from my chin were now just droplets from the shower head, and all of the salty remnants from my mourning were gone. Seeing the bag daily makes me think more and more about the past.
I think of silly, stupid things that annoy me. For example, I think of the pants that I can no longer wear, that I was trying so hard to look amazing in. I think of how just 2 years ago, I still looked decent in a bikini. I think of how horrible my hair looked in the family pictures we took a few years ago. Silly, stupid things. I get annoyed over that stupid red dress hanging in the laundry room...
Joe travels every year on Valentine's Day. He promises to make it up to me with a date on another night, which he did in 2015. Last year while he was traveling, I bought a sexy red dress with long lace sleeve, and it was short, which Joe loves. I bought an amazing pair of heels to match. I sent him pictures to show him that I was looking forward to our date night. The date never happened, and the dress sits unworn. I cannot wear the dress with this bag. It angered me. It was a waste of money. Joe will not be traveling this year, but we also seem to have a full schedule, with no time for us, so the fact that the red dress just will not work on my body anymore makes it a bit easier to deal with, as I plan to bag it up and say "goodbye". I won't be searching for a replacement.
I think of all of the dreams I never accomplished, and now never will. I am getting closer and closer to 40 years old, and so much time has been lost. I have come to accept some, and feel anger with the rest.
What has really been on my mind and heart regarding the past lately, are my past relationships. Relationships, and the ways in which I went about protecting myself and my friends, or so I had thought, during so many hard years.
I begin looking back and seeing just how easily I fell into controlling relationships with boyfriends as a teenager. I also realize that it was a way of protecting myself. The men who hurt me worse had no rights to me. They did not have permission to touch me, to invade my personal space, and yet they did. I found boyfriends who needed a long-term, dedicated girlfriend; a girlfriend who was broken herself and wouldn't easily leave, and then did all they asked of me. If they wanted me to cancel on my girlfriends to go somewhere with them, I did. If they wanted me to change who I was and what I enjoyed doing, I did. They kept me safe from others, and I just had to deal with their level of abuse, alone. I could balance out handling one. I couldn't go back to being uncertain. I couldn't go back to not knowing who would hurt me, and who was a friend. Those relationships made my life go down a path I wish I had turned off of.
I look at my high school years. A big part of high school was spent in the band room. I think about my relationships with my fellow trombonist. I laugh when I think about Ryan telling my sister, Chettie, that she needed to have a talk with me. I was an goofy Freshman, and he was a Junior. He told Chettie that I kept starting at him, and that he thought I had a crush on him. I didn't. Later we became good friends. I was staring at his ears. They freaked me out a bit. I was offended that he thought I was crushing on him, and I plain out told him that his big ears were completely full of blackheads, and they bother me. We shared a music stand, and when I would be staring at the stand I could see his ears out of the corner of my eye. He kind of laughed, and then got sullen for a few days. Then all was good. He grew his hair long. Problem solved.
Brandon. How I loved Brandon. He was my first trombone partner, and our friendship blossomed in middle school. He was goofy and awkward, like me. But he was also confident. He continued to be one of my all-time favorite friends, and the only friend that took a picture with me at our High School graduation. On graduation day, I felt the loneliest I had ever felt. I wonder how I could have changed things, how I could have lived High School differently. Adam also joined us as a trombonist. He came to the "dark side" after seeing how cool it was to play a brass instrument. Those days were so simple. I remember feeling happy at times. I remember laughing. Why does it seem like so few moments were spent laughing in high school and middle school?
The memories that truly haunt me, are those of my lost friendship with girl friends. I think that maybe, maybe if I told them what was truly happening in my world... but I remember the times they looked at me with pity.
You see, I was honest about the fact that my home life wasn't the greatest. A few times, instead of being hit, my dad lost his temper and threw a plate at me from the family room, through the kitchen to where I was crying. I was standing at the sink each time crying because I was once again doing my siblings' chores. They wouldn't do the dishes, and my sister would have left the house to be with her friends or to do Kickboxing, and my brothers just wouldn't do the chores. So, my dad would be mad, and tell me to do them. When I made a fuss, his patience was gone, and he would snap. I joked with my girl friends. I called the plates "flying saucers". They had a hard time believing that my dad, who seemed pretty cool, was also so hard on me. My mom was tired and depressed, and my dad was working or yelling. That was all I was willing to share with my girl friends.
When it came to light, that I knew more about male anatomy then most young girls my age, I couldn't deal with the thought of being seen as more of a freak than I already was. When we would sit by the canal discussing boys, and crushes. I lied. To me, it was better to say I had willingly gone further with a boy I liked, then to tell them I had been raped. When I talked about my "crush" it was easier to act boy-crazy about the redheaded 18 year old that seemed to have an interest in me and happened to be another one of my friend's older step-brothers, than to tell them that he tried to force himself on me the last time I was at her house. That he put his hand over my mouth and touched me. Or that he backed me in to a wall with his back to me, pulled my arms around to his front (as if I were hugging him from behind) and put my hand down his pants and on him to show me that "he wanted me". I was 13 years old. I then slept the rest of the night in my friends room, scared to get up to go to the bathroom, or leave the room without her for any reason. I never went to her house again after that. That story was too difficult to tell. It made me feel dirty. So I lied to my other friends. The friends I cared most about. The friends that I didn't want to judge me. I instead told stories of me being willing, instead of me being abused. As a girl in middle school, I didn't realize what my lies would mean. I would look older and mature, not a girl that was a freak, that remembers the pain of being touched by older guys since she was 5 years old. Eventually my best friend, whose birthday was only 2 days after mine, whom I cherished, but I had lied to, went her own way. I lived with the knowledge that perhaps I caused it by hiding so much.
My freshman year of high school, I could have really used my friend's support. As all of my relationships were crumbling around me, I was struggling alone, with the fact that 3 young adult males, stole every last crumb of who I was. They left me broken. They left me afraid. They left me that much more alone. My safe-havens were ripped from me. I would sit on the bow of the sailboats and stare out at the waves, and talk to the wind. I would hide in books. I would get lost ion sleep, and dreams. I was alone almost all of the time.
I continued to hold some of my other girl friends at a distance even when it seemed we could become closer. I never told them the truth. If a boyfriend was abusing me, he was still "the best ever". I didn't get invited to sleepovers after 8th grade. I wasn't invited with a group of girls to go to The Snowball, and I stayed home. I didn't get invited to any Birthday parties throughout high school. The only graduation party I was invited to was Brandon's. I look back now, and the walls that I had built were so high!!
I mean, partially, my solitude was due to living in the country, without any transportation, but the rest was due to fear. the rest was due to my fear of being hurt. I feared breaking rules, and getting in to trouble. I couldn't rebel with my friends, because the consequences would be too great. I feared the dark. I feared being alone. I feared being in large groups. I feared offending people. I feared being disliked. I feared being bullied more. I would line myself up with one person, one person who "loved me" and hide from everything else that could hurt me.
I still live in fear. I look in the mirror and fear the rejection that may come with this stupid bag. I question how I will put on a swimsuit. I question how I will ever change in a locker room. I question what my husband is truly thinking when he sees me naked. I feel the fear creep up my back and I feel helpless. I refuse to stand in front of a full length mirror. I cannot handle seeing who I have become. So memories enter my mind, I while wondering if there was a different path I could have taken, how I could have prevented this, I also remember other ghost of the pasts.
The direction of my thoughts make no sense. They truly are a web. today they are on people of my past. Lost relationships. Fear. I use to be afraid of ghost. Now, I seem to seek them out.
With every battle, trial, hill and bumpy road, I often forget my own worth. I put on a good mask, and pretend to be confident, while inside I live with self-doubt.
Each day, I must look in the mirror and decide I am worth it.
Today, You are worth it.
“Being deeply loved by someone gives you strength, while
loving someone deeply gives you courage.”
― Lao Tzu
I love him more than words can say. He is my daily strength, and my daily courage.
Every day I continue to struggle. I try to keep positive, and not focus on the negative, but the last few weeks have led to increased depression. I went to my doctor, and reported on the anxiety attacks, panic attacks, and depression. I do not want to live in a depressed state. I know that my husband allows my depression to weigh on him. I tell him that it is not his fault, and that he cannot fix it, but he takes ownership anyway.
I feel this way because of my history. I feel this way because of my present physical state. I accept the happiness that surrounds me, but the my present physical pains and symptoms allow the depression to creep in. I have never been a person who has had a happy, easy life. I have had to fight for every morsel of joy. I don't know how to explain to others that I am the happiest I have ever been as far as family and relationships go, but the most depressed I have ever been over finances and my inability to provide for my family. Every ounce of additional stress placed on my husband weighs even heavier on my heart. I feel the need to be independent, to be able to care for my family. Joe feels the weight of my illness also. His strength allows him to carry that weight.
Joe shows incredible strength every day. A little over a year ago, when I felt the fear of impending surgeries, and how it might cause stress on him, I asked him if we should postpone our wedding. He reassured me that no matter what, he wanted to marry me. He said that no ileostomy bag could scare him away, and he will be able to be my strength as I struggle through getting well. I find my courage through him in return.
My amazing husband works full-time, providing for all of us. Joe is also building a business on the side, in hopes that he will be able to make future dreams realities. Most recently Joe started taking a college course, to help build a new skill set, so that he will have an even stronger resume, not that his resume isn't amazing as it is. Joe just continues to find ways to better provide for all of us. I am so proud that he is mine. You are never too old to learn something new!
I have never met a man with more strength or more courage than Joe. He went from a small family, of just him and young Joseph, to building a relationship with me, and my 3 daughters. He celebrates with me upon life's UPS, and he has offered me strength through all of life's DOWNS.
Soon I will be having a surgery, which will forever change my body. He will never have a wife that can go back to her bikini wearing, care-free days. He continues to celebrate my body, and is not afraid of the changes to come. His strong shoulders are what support me as I shed tears. His arms wrap around me and revive me, making me feel grounded once again. His encouraging words chase away the whispers and fears that echo through the corners of my mind. His love gives me hope.
These are the reasons it is so hard to be away from him. The strength and courage his love provides is like oxygen. I need him, and I want him by my side, more with each passing day. Some people choose to tell me, that after so many years of marriage that feeling will pass. I don't know how it ever could. I never want those feelings to pass. I married Joe because I knew that I could spend the rest of my life committed to him.
This isn't one sided. I know that Joe needs me too. I provide him with strength and courage. I pray that he will always need me just as much tomorrow as he does today, if not more.
When people speak of the joy of kids, they talk of the "little footprints they leave on your heart". People talk openly about giving birth, or adopting the child they were meant to love. You hear people talk about the "perfect" family they hope to have one day. I remember talking with my friends about how many babies I would give birth to, and how many babies I would adopt, after I married the perfect husband that God had been crafting just for me. We would all live happily-ever-after.
I married my first husband at the age of 24, and when I did, I gained my first daughter. Jasmin was 2 years old when I met her dad, and 4 years old when I married them. I had my happy little family, through non-traditional means. We would continue to grow our family when I gave birth to Jasmin's 2 little sisters. Happily-ever-after was not meant to be for all of us as ONE family, however.
When I became Jasmin's Bonus-Mom there were struggles. Family members struggles with my new role in her life. There was a lot of responsibility on my shoulders to others now, not just to Jasmin and her dad. I was 24 years old with no bio children. While I jumped right in to the parent role with ease (preschool pick-up and drop-off, play dates, clothes shopping, bedtime stories, kissing boos, holding barf buckets, etc.) there were the emotions which I was not prepared for. There isn't a book on how to be the most amazing step-parent. I hate the word "Step".
No one tells you that you will become the cement that holds EVERYTHING together if you are open and willing to be. You become the parent that makes the plans to bring all the parents together. You have your step-daughter's mother there for holidays. You buy her bio-mom flowers on Mother's Day, and gifts on holidays, yet you are the mother that is often overlooked, and you have to be OK with that. You have to be OK with handing over your "Step child" on Mother's Day to their Bio Mom, then spending the whole day with a hole in your heart. No one prepares you for that.
When others do not treat your bonus child/step child as if they are equal to your bio children, it hurts you, because you know it hurts them, and because you see all of your children as YOURS. Jasmin kept her distance from Joe's family, because she instantly felt that if I remarried, a new family would not accept her as my child. She didn't want to get attached, to feel a desire to be a part of a family, and then not feel the same amount of love in return. She has heard others in the past speak of her sisters as "my daughters" leaving her off the list. Nothing hurts more than knowing your child is feeling pain, and feeling fear. Joe and I have made it clear, that she is my daughter, and always will be. When asked about our children, she is always the first on the list.
She struggles with explaining who I am in her life. I am one of the mothers who raised her, but am no longer married to her dad. I am her Bonus Mom. I feel guilty that she has so much weight on her shoulders.
I went through my divorce from my daughters' father. The first year after, Jasmin lived with me (not her dad, or birth mother, but me). I felt happy and I felt balanced having all 3 of my girls under my roof. Jasmin made the decision to try living with her father when I moved from one town, to the town in which I now live with my husband Joe. Jasmin choosing to live 20 minutes away with her dad has been extremely difficult. Jasmin became very busy with cheer, with dance, with work, and with volunteering. She would miss weekends with me, and then months with me. I felt a big part of me dying inside.
When you love a child as if they were your own, and then suddenly they are not there to cuddle with every night at bedtime, your heart begins to break. Joe continues to hold me at night, when I breakdown, when I can no longer hold back the tears, and the pain takes over. I do not know how to explain the pain. People will tell me to just hang on, because in a few years, when she has coplete freedom, I will be there parent she comes to. They don't understand how much it hurts to be missing these past 2 years. A family vacation does not feel like a vacation with her not there. You constantly think, "Jasmin would love this" or you are thinking in that back of your mind how much you miss her. Life is not complete without Jasmin.
I was the mom that planned the play dates. I was the one who knew everything first. I was the parent that drove her to events, and made sure she had spending money in her pocket. Now I am the mom that knows nothing. I am the last person to know anything happening in her life. It feels like continuous stab wounds to the heart. At times it feels as if someone is crushing your chest. You find yourself sobbing until there are no more tears, and you feel as if you are going to vomit.
When Jasmin is here, I still tuck her in. She is 17 years old, and a senior in high school, but she still gets goodnight hugs and kisses. She is never here enough. I pray that the hours will drag on, and that she will never leave these four walls. I pray for another hour to talk to her. I pray for more cuddles on the couch. I pray for one more sniff of her hair. I want to breathe her in.
Now I also have Joseph in my world. He is my step-son, sandwiched right between my two younger daughters in age. I am once again the parent that keeps communication flowing, inviting his bio mom to holidays, and his mom's parents to birthday dinners (his mom and her parents are not communicating at this time). I am the one that is there to offer a "hello hug" to Joseph's mom, making sure she feels welcome. I am the one that has to watch as her only boy walks out the door on Mother's Day to spend the day with the woman who gave birth to him, but I still love him just as much as she does. I am the parent that will buy and wash the clothes that he will pack to take on trips with his bio mom.
I hide the tears I shed when it comes to Joseph. At times I do not want Joe to know my pain. I came into Joseph's life when he was at an older age than Jasmin was when I came in to hers. The "I Love You's" don't flow as easily from a young man's mouth. There are moments when he doesn't mean to hurt me, but he does. There are moments when wish there was a way to get him to understand that I realize he was a victim of his parent's divorce, but I was not the cause, nor am I the enemy. He love me. But as long as I am in the picture, in his mind, there is no hope of his parents EVER getting back together again. I am a wall. When he hurts me I go off and I cry alone. It isn't Joseph's fault he has so many pent up feelings.
The other day, however, I got to thinking. We want to know as parents that our kids realize how much we love them. We want them to look back and see all that we did for them, because we love them. And while Joseph and Jasmin have not always openly said it, I know they feel my love. How?
When Jasmin has been put in tough spots, the moments when she really really needs her parent, I am the one she calls. When Jasmin is scared, she calls me. When Jasmin is not feeling safe, and she needs to be picked-up, she has always called me first. She knows I will be there. This tells me that she feels my love for her. She knows she is a priority in my life.
As for Joseph, there was a little moment that got me thinking. You see, last week Joseph needed binder dividers for school. Joseph came to me. It was just, "Elisa, I need 8 binder dividers for school", but it held so much more than that. It was,"you are the parent that I can go to for this". I am not able to move mountains for him. I am not able to be a huge role in many parts of his life, but I am able to do the little things moms do. I am able to buy him new pants when he has grown. I am able to buy him the new shirts he really, really wants for the summer. I am the one who can cook him his favorite meal for dinner, remembering the stuffing as a side. I am the one he can explain a situation to, before he talks to his dad, helping him find the right words. I am the one that tucks him in each and every night in the exact same manner that I tuck in each of our daughters. I am the one that refers to him as my son, when I could very easily say "step son", but I feel that there is no "step" in our family.
I am the one that will teach him to use wrenches and socket wrenches to work on the handle of the lawn mower. I am also the parent that just spent the last few days with Joseph, gathering poster boards for his project for school, printing off pictures of him with his mother (and the rest of us), and discussing the outline for the project. He has had this assignment for over a week. I also am the parent that stood there smiling, as he described the project to his mother, as she forgot about it ( it is a collage about him), and she said, "let's go home and think about how WE want to do it. Let's go to Walmart and look at all the photos that are on my phone". It made me feel insignificant once again, but I am the parent that will swallow it down, and step back. I am the Bonus parent.
I am the "over looked parent" but I am also a parent my kids know they can depend on. I am a parent that will always be there when they need me, whether it be for something as small as sewing on a button, or something as large as running across the country to rescue them if something were to ever happen to them in the future. I am the parent that says "There is no STEP in our family description", and I mean it. I give it my all to all of them every day. Just as Joe gives his all to our daughters and son.
Being the Bonus Parent is the hardest job there is!! I will never step back from my Bonus Children. With me, they have a life long parent they can depend on, even if I didn't grow them in my tummy. I grew all of my children in my heart.
I have to take baby steps with my Bonus Children, sometimes walking on egg shells, and always thinking before I speak.
I may have missed their first steps, and their first words (We wont even get in to how much it hurts to not have those moments and memories with them) but the moments we have now, leave big footprints on my heart.
Joe and I with out blended family. Est. August 2016.
Many people ask why God allows bad things to happen. He has reason for all that he does, even if we do not understand it at the time. This is why we must have Faith, and Trust. Challenges help us grow, and they create empathy in us. If no struggles existed we wouldn't have an appreciation for others, for gifts, for kindness. We wouldn't have a need for God, or Faith. God allows us to journey down our own path in life, knowing that we need experiences. We make choices, whether good or bad.
As for my health struggles, I trust God to lead me to the right surgeons, and doctors. God gave the gifts to those individuals so that they could heal sickness, so they could mend broken bones, or remove harmful things from our bodies. This is one way that God heals... he has gifted others with a talent for helping others medically.
I get asked, "Did you get a second opinion?" I want to bang my head against a wall. I have gotten second opinions, third opinions, fourth opinions... I have seen doctors in different specialties to rule out everything. I have left no stone unturned.
I had a less invasive surgery, and my issues became worse. I saw a different surgeon, and she ran new tests. She said, "Ileostomy, and no you will not be able to have the procedure Joe had. A J-pouch will not work for you. Your diagnoses is muscular, and the problem will only come back with a J-pouch. You will have a bag, for the rest of your life". I went home, and I cried with Joe. He left work early, and met me at home. He met me on the basement stairs, and I was still holding it together. The moment he wrapped his arms around me, the first sob escaped my body. I broke down. It was 5 days before our wedding. How could he still want to marry me knowing I would be facing such a surgery, such a physical change? We didn't take her opinion as the answer. We went with a different surgeon, and no ileostomy. We thought the less invasive surgery must be the answer. We were wrong.
I have been spending the past year post-op in agony. I have missed so much of my life. I lost days with my children and husband. I have missed almost every social event. I have lost time on the ice curling, and trying to improve... instead taking steps backwards. I am not sure that anyone would even want me on their curling team now. I have suffered financially. I lost my JOB as a nurse in a doctor's office, because I was spending so much time in the ED or unable to get out of bed, or I couldn't stop vomiting. I had to hire a lawyer to go to court in order to receive disability, so it will be at least 2 years before I see any of the disability money I qualify for. There is a horrible feeling that comes with the inability to afford copays. You need to see the doctor to get better (so you can work and earn a living again) but you cannot afford the copay demanded at the time of the visit, so you must pick and choose which doctor to see and when. If I had just lost my job (got fired or laid-off), I would receive unemployment, but since I am disabled (my doctor has documented such) I must prove it through a court hearing before I can get any disability payments. There is a 2 year wait for such hearings. My lawyer said most people lose their homes before they see a check, so they attempt to go back to work, and then get worse, and lose the job, and it continues in a cycle.
Not having the ileostomy surgery a year ago was my choice. It was not God's doing. So all of the bad that has taken place are results of my actions, not unanswered prayers by God.
What if I had the surgery a year ago? I don't know that answer. The answer may be that all of that time spent on my knees praying for relief was met with an answer, and answer I brushed off. I instead chose my own path, not God's. My dad had said, "I do not believe that an ileostomy is God's plan for you." My husband was worried about my strength of handling the after effects and body image of an ileostomy. I believe that God thought I was strong enough. He may need to use me to help others through this. Now that I am facing this possible surgery, I am not keeping quiet.
Maybe it wasn't that I was not strong enough for such a surgery. Perhaps, those around me were not strong enough. My parents were scared. My fiance, and then husband, was scared. My friends were mortified by the thought of my having an ostomy. My fist thought in the doctor's office, when she told me, was "I can do this." After talking to others, I became less and less sure. I started worrying more and more about what others would think.
I started thinking about all of the things others would think when that saw my stomach. I thought, "My bikini wearing days are over". Why are they over? I will most likely lose all of the weight I gained since my first surgery 3 years ago, and more! I will probably be back down to my pre-baby weight. The reason I would avoid a bikini would be to avoid offending others with my bag and scars. I even thought, "Will my husband take pleasure in seeing my tummy ever again". I researched what lingerie ostomy patients wore. I looked up the ways women made their bags seem less distracting, creating bag covers by buying and extra pair of panties with their new lingerie, and then going home and sewing one pair in to a matching "bag cover". There are also "bling covers" for your stoma caps. Women try to hide their stomas and bags. I thought about how people will hate seeing my stomach. I thought about the fact that I could never bring myself to change in a locker room. I have heard comments from other women when you even mention bodily functions, imagine if they accidentally see my bag. Is this the right way of thinking? That bag may save my life, allow me to be me again, allow me to feel like a human again, instead of living every day in constant pain and discomfort. Will I have the strength to embrace it? Each day I see that as a possibility. The people who judge me should be ashamed, not me, but I still am.
As for that bag... I am already looking at ways to get rid of it. Not out of shame. That external bag would make it difficult for me to do some of the activities I loved in the past, like Tough Mudder. A BCIR procedure would get rid of the external bag and allow me to move freely without having to worry about jarring a bag loose and facing a "Poop Catastrophe". Yet again, I thought, "still no bikini". I thought about the GIANT scar that would cover my belly as a result of this surgery. The small scars that would dot the remainder. I thought of the little two inch button hole that would be left behind on my side, and while it would be less appalling that a bag, it still would leave me abnormal. Yet each day I am able to accept and embrace this idea more and more. This would be my new normal.
I fight back tears when I think that I will be hideous to my husband. I then pray. I leave it in God's hands. He brought Joe to me, in a new light, for a reason. He put this friend before me: one that had also dealt with colon issues, one who was also going through a divorce, one who also felt insignificant at times, one who had mutual friends with me, one who has known me for over 20 years, and opened my eyes to him. I looked at him and truly saw him that day. I saw his face, and for the first time wanted to trace his jaw with my finger tips. I had to turn away from his deep brown eyes, because the feelings I had were sudden, intense , and confusing. God was working on my heart that day. I must trust that God has a path laid out before me that will lead me to great things. That he is able to help my husband to see beauty in all of my scars. Joe tells me every day that I am beautiful, and that my scars tell my story, and do not make me less beautiful. I need to Trust.
I need to allow God's plan to play out. He is going to use me for greater things.
I am seeking ways to help others through my experiences. I believe God wants me to be a light to others, and use my story to connect with others. I am looking in to having the rest of my journey documented. So many people see this as a forbidden topic. EVERY BODY in this world has a body that gets rid of waste. Why oh why have "urine" and "bowel movement" become swear words to so many people. Every body poops. Every body urinates. Every one has vomited at least once in their lifetime. Why make people with health concerns feel so ashamed? I did not ask to live like this. People ask what is wrong with my health, and when I tell them, they turn away disgusted. I then turn away and hang my head. I cry when no one is watching.
I would choose to be "normal" and whole if I could. Yet every moment of every day I must have thought in the back of my mind about what is going on with my body. Every twinge, every pain, every feeling of faintness. I have to calculate whether it is safe to eat that piece of candy, "Is my stomach feeling the least bit funny?" and I must calculate every choice to be social. Every few breaths I get pains in my side. I have to keep track of days (the last time I did this, or that) and then decided whether what I am feeling that day aligns with what my body has been doing daily, weekly and monthly. I am ALWAYS think about things that no one else ever thinks about, (muscle contractions, peristalsis, breathing, etc) just to get through a day. I know that out there, there are others struggling daily, just as I am. How can I help them?
Every day God listens to our prayers. There will be times you will think that he is not listening, or perhaps that he does not care. The truth is, just because you did not get the answer YOU wanted does not mean he did not answer your prayer. He answered it in a way that will guide you to the path he had laid before you, the one that you will often begin to wander away from. It is time for me to listen, and get back on that path.
I smile through tears.
I laugh through tears.
I survive through tears.
I hope through tears.
I heal through tears.
Day after day, more bad news. Today broke me.
What does one do when every time they dream their dreams are proven impossible?
I continue to hope, day after day. I am choosing not to live each day with "Woe is Me". I smile. I laugh. I am warm to new people I meet. I welcome everyone, and I assist anyone I can. My heart is still screaming, "When will it be my turn?" when no one is watching.
I have been called a Black Cloud, Jinxed, Bad Luck.
My husband calls me a survivor, and strong. I feel as if I just barely survive through the every day.
My psychologist is helping me through my past. The things I blog about may amount to PTSD... we will see. I am having anxiety and depression now. My continued health condition has brought up the BAD from the past, and has exposed me to new traumas. My psychologist tells me what a positive outlook I have.
My doctor said, "You smile when you are nervous" as we discussed treatment options and surgery.
I feel lost on some days. I wear so many masks.
A couple of days ago someone backed their pick-up truck into our parked van. The sliding door will need to be replaced. That can be easily fixed & I stay positive.
A few weeks ago letter came in the mail to deny my disability claim. This was expected. We knew we may need to hire a lawyer. So once again I stay positive.
Yesterday Joe and I met with our disability claims lawyer. I started to feel my heavy heart grow heavier. I received the news that hearings for disability take about 2 years to get a date for. That for 2 years, even though I am disabled (cannot work more than part-time hours, and my physical abilities are limited), that we will have to find a way to survive without my benefits. I am already shelling out extraordinary amounts in co-pays. The last visit to the Cleveland Clinic had cost us around $1000 out of pocket. Every time I see a doctor it is another $50. Our out-of-pocket monthly payment for health insurance in the first place is very high. The lawyer said that the court does not seem to care that those who truly deserve and need disability benefits end up in a state of destitute. They only speed up the process if you attempt suicide or homicide. They may (but not usually) attempt to schedule you sooner if you become completely homeless.
Any one who has spent a full week with me sees how I struggle to make it through the day-to-day. I may have a great morning, but it will be followed by a horrible evening. I may be able to visit with friends one night, but be vomiting and in too much pain to function hours later.
Joe and I look at each other, and determine that we will find a way. There has to be a way. We sign the paperwork, and we are letting the attorneys do what they do. This is our only option.
Today though... today added insult to injury.
I had been reaching out to the BCIR clinic in Florida. I wanted to have BCIR surgery immediately, instead of having an ileostomy, and then the BCIR surgery later as a second surgery. They are both long and complicated surgeries, with a lot of healing time involved. With an ileostomy bag I am not going to be able to be as physical as I was before all of these health complications flared-up. I want to be able to do Tough Mudder. I want to be able to be a nurse. I want to be able to be rough and tumble, and physical.
With the BCIR surgery done first I would be able to get there faster. I would be more "me" again sooner. I would have no concerns about a bag leaking or getting ripped off. I would have no concerns about my skin breaking down. That is actually a huge concern of mine. Band-aids leave me with rashes and scars that last for a year or more at times. I would have an appliance attached to me with adhesive ever single day.
The BCIR clinic called today to let me know that they had come to a conclusion about my treatment course. They want me to have an ileostomy bag first, as my bowels are in such a bad place. If the ileostomy bag works, then the BCIR will work later. I am going to have to have the bag for 6 months before they approve BCIR surgery.
Extra scars. I already have so many. We are now talking many, many more. Most likely opening me up from just below the rib cage, straight down, and ending at my pubic scar, sectioning my stomach in two halves. Not equal halves however, as the curve around the belly button.
I now have to find a doctor to do an ileostomy surgery. I then will have to care for an ileostomy for 6 months. If all goes well, they will decide how soon to schedule a BCIR procedure which I will then fly to Florida for. I will remain in the hospital there for about 20 days.
Every time I see another doctor it involved waiting 1-3 months to actually get in to see them, and then months of tests being repeated. They surgery gets scheduled out (because OR schedules are scheduled the month prior, and it is first come first serve) and you usually have to wait 2 months or more to be scheduled. We are looking at about 6 more months before I even get an ileostomy.
I need to feel better.
Will the madness ever end?
How will my husband feel when he sees the ileostomy bag attached to me? Will my kids be too scared to touch me?
When is it my turn for a day of pure bliss? I am starting to lose hope, and lose faith.
Today I shed my tears in private, and then I continue to smile through the tears that remain.
At times I have to ask myself, "What were you thinking?" This morning was one of those moments. Perhaps I have good intentions, but those good intentions go terribly wrong at times. A big "Oh Poopy!" or maybe "Aw Sugar!" are common phrases to come from my mouth, but this morning, I had to hit my knees in prayer after the scene that unfolded. I begged God for forgiveness over the profanities that exited my mouth.
I usually go to my amazing waxer M.E. to get my brazilian waxes. With the way I have been feeling, getting out of the house to do so has been an issue. Not to mention the added expense while I am out of work is a burden.
Funny thing. Men seem to love brazilians. I also LOVE having my brazilian waxes. I have a high pain tolerance, and I really do not think they hurt. It is quick, easy, and so clean and fresh. It lasts a long time, and it makes me feel confident.
When you can't get a brazilian, you have two choices: Let it grow, or mow (shave). This puts you in a "hairy" situation. Letting it grow is not ideal for summer (or at all for me). I tend to shave my legs daily because I hate the feel of hair, even in the winter. Yet shaving, that brings about its own issues.
If I shave, my crotch screams in anger! I cannot wear a swimsuit for days, let alone underwear. Shaving my bikini area instead of waxing leaves me going commando for about a week. I get rashy. Not just a little rashy, but bloody & raw rashy. It is extremely painful. Here is part of the issue... If I shave, it will make my man happy because it is more appealing. If I shave, it will also leave him sad, because he would have to hear the words I never, ever choose to say: DO NOT TOUCH ME! I am in so much pain from shaving if I do so.
I haven't been able to get to my esthetician for my brazilian, She does not make house calls (I am beginning to wonder if I can bribe her), and I really needed to feel pretty and ready for anything. Who knows, maybe we will get a rain-free day this summer, and I can spend one of my days relaxing in a swimsuit while my kids play in some body of water lined with sand. MAYBE...
I purchased wax. Back in the day, before children, I used hard wax and easily took care of the pesky bikini zone. I mean, in college, when funds were limited, waxing at home in the bathroom was common. I could do this. RIGHT? On the shelf at the store I noticed the hard wax I was use to (but only used to do a bikini wax and not a full brazilian), and a little bit more expensive wax (same brand name) that states it is perfect for brazilians, also labeled "hard wax". I grabbed that one. BIG MISTAKE. Today I opened the package.
I am sitting in the bathroom, setting up my work area. My robe is on. I open the wax. DAMN IT! This wax is not completely hard, but not quite a sugar wax either. It needs to be microwaved, but is just soft enough to stick to the cap, and leave residue every where. It leaves a long train from canister to cap, which I twist and twist trying to break it free. What a mess. I succeed. I have yet to put on my rubber gloves.
I go down to the kitchen, stick it in the microwave for 40 seconds, and grab some olive oil. I quickly use the olive oil over the kitchen sink to remove the waxy residue from my fingers and plop on some gloves. I grab the wax from the microwave and dash upstairs.
I should mention that I am trying to be stealthy. You see, my in-laws stay with us during the summer. This makes personal things like this that much more difficult. Imagine if my father-in-law is curious about what's in the microwave. Or I truly get in some sort of awkward situation... There is no walking around in underpants for months at a time and when I get up in the middle of the night for a glass of water, I have to put on my Pjs. Privacy is limited. So, if I truly make some sort of sticky mess, and let's say, drop the wax on the floor, there is a lot of embarrassment and explaining involved with the clean-up.
I open the bathroom door to enter. It is at this moment that my 10 month old cat dashes in to the bathroom. He loves the bathroom and drinking from the sink. He jumps right on to the counter where the lid covered in wax sits. I quickly grab him with my gloved hands. There is already was residue on the gloves. As I toss him out of the bathroom his fur is left behind in clumps on my gloves. I never, ever use this word, but today, it is all that I could think of... This was NOT the PUSSY I had intended on waxing. Please forgive the vulgarness of that statement, but seriously, Can it get any more ridiculous?!
I peel off of my gloves, and I put on the spare pair that were in my robe pocket. I then go to work. So far, so good. The wax works amazing! Smooth skin is showing. NICE! But the wax is a hot mess, and difficult to use. I get one side close to being done, and my gloves are covered with a sticky mess. If I get close to anything it instantly sticks to my gloves. I have more gloves, but idiot me left them in the bedroom. I am really using my brain this morning. I have a few choices. Put on my robe, get it all sticky, and ruin it in order to retrieve more gloves. Make a mad naked dash into the bedroom, praying no one suddenly appears and sees me (it is only next door). Or attempt to continue as I am. I chose to continue.
I start on the left side now. I never hurt while getting waxed, but gosh darn it all, this HURTS! I notice I am left with a dime size bruise as I rip away one of the papers. It successfully removed the hair, but also is destroying my flesh. I look at it thinking, it is a good thing my husband knows what a hot mess I am, because that certainly looks like a hickey. This is when I notice that there are little blood spots that have formed on the right side. I have NEVER had this happen with waxing before.
I decide that I must be getting old. There is something about having a house full of children and many more responsibilities than you had in your college years, that make simple beauty tasks turn in to the equivalent of chasing a greased pig around a muddy sty. The whole time I am trying to keep my voice down, not allowing my in-laws or children to hear my cursing.
I then realize: This is why I am willing to pay $65 for a brazilian wax!! This is exactly why. I then think of M.E. and the books she has written about the funny things people say while being waxed, and her comedy show. I then slap my forehead, realizing, I am now most likely going to become "one of those women" that she writes and jokes about. I had yet to be one.
By the Way: You can purchase one of her books by clicking on the image:
When I get waxed M.E. and I carry on normal conversations. we talk about work, family, and recreation. We also talk about my past trauma, and how she feels I should write a book. You see, M.E. is the author of romance novels and more, not just her funny books about waxing ladies and men. She loves an idea for a good book. I have never been a funny story in one of her books yet. This has all changed today. That is when I notice that my gloved palm is stuck to my forehead. WHAT THE HECK IS WRONG WITH ME TODAY????
This hurts like hell. I am sticking to everything. I am not even done yet.
I look down to survey my work. I have the center strip left to go. It is not a straight and pretty strip. It looks like an overgrown yard that had the mower die midway through the job. I QUIT right then and there. I would not be able to get to the middle. I think of all of the things that can still go wrong. I can picture getting my cheeks stuck together and having to try to sit in a tub of oil to try to loosed them and dissolve the wax. This would ultimately lead me to slip in the tub, falling, cracking my skull, or breaking a bone. I am home with my kids and in-laws, so my in-laws would have to come rescue me. I cannot even imagine. The hairy strips. The wax. The oil. The cat fur covered rubber gloves in the garbage. The wax covered sticks used to spread the wax. The scene was not pretty.
I began to think clean up. The tiny bottle of wax remover was not going to cut it. I stood in the tub and splashed my nether region with baby oil and began removing wax. It was every where! I thought about how this was not a sexy use for baby oil. I quickly washed it away, scrubbing the floor of the tub at the same time, trying to prevent a slipping accident. So much could still go wrong.
I remember telling my husband last week that I was going to try waxing again, but waiting until he was home for assistance. THIS IS WHY! Seriously. Last week I was using my brain. What happened to it today?
I have come to the conclusion. M.E. will be the only one to do my brazilian waxes in the future. This morning had not turned out like I had hoped. I also must hang my head in shame. I now must make an appointment with M.E. and get the job finished. I don't care how sick or disabled I am. I will have to find a time when someone can drive me. I must get this done. However, this also means I must tell her my story of this morning. I will become the next chapter in her book, and I am not thinking that is necessarily a good thing. It must be done though, because this today, is NOT a "Happy Hoo-Ha".
I feel about as sexy as this cat:
If you are looking for a great place to get waxed in Rochester, NY feel free to visit Mark & M.E. I highly recommend it.
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