Insecurities are a real…..

 

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Insecurities are a real bitch. They suck. They suck the love, joy and happiness from you. They can destroy you, your relationship and your happiness. “Just be confident”.. People say.. Don’t you think i’ve tried that?? Do you think I like being this insecure, scared person?? 5 years ago I was so confident. I knew who I was, what I wanted, and I wasn’t holding back. Now, I’m terrified, scared and emotionally fragile.. What happened you ask… well i’ll break it down.

I left someone I loved and whom loved me unconditionally, and wholeheartedly. Simply because I felt I wasn’t worthy. I felt I didn’t deserve this amazing person that loved me so fiercely. I was told i’d be wheelchair bound, I ignored the doctors, I was determined to walk down the aisle to him, come hell or high water. In the end, I left. The fear, the uncertainty, the unworthiness I felt, overpowered his love. At what point would he grow tired and leave? At what point would he finally realize I dragged him down, that I embarrassed him?? So, I left first. Defense Mechanism. I didn’t stop to think what this would do to him, or me in the long run. I didn’t think how this would affect him emotionally. I buried myself. Locked who I am deep inside. I was this vibrant, confident, headstrong, sexual person. I locked her away… I became unsure, quiet, reserved… Why?? Because That me, wasn’t his me… That me, wasn’t the me he brought out and encouraged. If I lost sight of the other me, the real me, it wouldn’t hurt so bad, not being his. This new, reserved me… the repercussions are immense. I lost me. I lost my confidence, my strength, my vibrant self. For what? I lost love, for what? Fear?? It’s bullshit in all honesty.

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One of my good friends tried to tell me, she tried to warn me. I shut her out…. Years later she and I have reconnected, just as He and I have… This fear… I wanted to shed it. I was slowly embracing the real me again. The me I used to be. Loud, vibrant, confident, secure in who she was and in her relationship…… Then it all came crashing down.. So so hard. In March, I had my life rocked. Words spoken by people I trusted, people I leaned on. This had a rippling affect… So many ripples.

This feeding tube.. .this device that is essentially keeping me alive is destroying my confidence. Why?? Why am I letting it?? Why am I losing sight of everything again? Why is the fear so prominent?? Today, today I nearly lost him. Today he told me to have a good life, because he’s obviously not what I want… I screamed, I yelled, I cried. Because for 7 damn years he’s who i’ve loved. He’s who I imagined walking down the aisle to. He has been my cheerleader for years. He has been there for every step along the way, even when we were apart. Just him. He and I are like Yin and Yang… Peanut butter and jelly… We’re Us… We always have been. We’re like Noah and Allie finding our way back to each other…. Today…today was almost the end. Today my best friend Aly tried to soothe me, calm me and reassure me. I couldn’t be soothed. I couldn’t be calmed. I was heartbroken. I think everyone saw the cracks forming. Everyone warned me of what my insecurities would do… That was the one thing he said he couldn’t handle, the constant negative talk about myself… the constant putting myself down… comparing myself to other women… women without tubes, ports, limps… healthy women, pretty women, skinny women… All that I’m not… Would he get tired and want that?? Would he see me and just not want me anymore?? Would he rather one of the “barbies” from before me?

 

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What triggered this spiral… a simple request from him…. Complete and utter trust… Trust with my heart. I trust him with my life.. trusting him with my Heart… Knowing he is the one person that would have all of me, mind, body, heart and soul…The ultimate power to emotionally hurt me..Holding it back, not giving all of it, it protects me. It gives me “control”…Trusting him so completely, trusting him so fully, and immensely with the one treasured thing, my heart. How do I do that? How do I open that up to him? How do I let go of the fear, of the absolute terror? Do I think he’d hurt me? Never, not intentionally. The thought of opening up, of letting him in completely, what if he proves me wrong? That I AM worthy? That I AM deserving?? That I AM this amazingly beautiful and so full of life person?? What if all these things i’ve thought of myself for years are proven wrong?? I’ve spent so much building up and saying what i’m not, that what if I am these things? What if I am this beautiful, and loving person? What if I am this sexy, confident person?? Can I still be that, with my feeding tubes, with my port, with my cane?? The only person saying I can’t, is me… My insecurities.

That’s  my life.. For three days a week, I run IV Fluids for 4 hours, and Every day I run feeds for 16-18 hours… This is Me….This is what I see. This is what he should see, but doesn’t. How can he see all this, and still love me? How can he see it and still think i’m beautiful and sexy? I want to see what he sees. I want to see what everyone else sees.

On the other hand, what if it doesn’t work? The fear, the absolute heartbreak is crushing. Am I so afraid that I can’t trust completely? Am I so scared that i’m willing to lose love? I have a chance at love, a second chance at a really great love. Not everyone gets a chance at love like this, and here I have a second chance… And what am I doing? I’m letting it slip away. I’m slowly losing myself, I’m losing everything. I’m working so hard to stop, i’m trying to rebuild myself. The fear, it’s so there. How can I let it go? How can I love me again. How can I do this??? One day at a time… That’s how. Through the love, support and encouragement of friends, that’s how. I need to see myself as everyone else does. I need to realize my worth, realize how worthy I am of this love. Of all the good in my life.

Insecurities are a bitch. We all have them. We all struggle, just varying degrees of it. Some of us let it control us, let is shape us, affect our relationships. It’s so hard to be strong enough to resist, strong enough to overcome it. Trust.. It’s such a word we toss around, but when it comes down to it, do we have that in our lives? Do we fully trust people? Trust them with all of us?? Do we take that leap? The leap of faith and trust. The trust isn’t given freely, the ultimate trust is treasured. We hold back because we want to protect ourselves. Protect ourselves from potential heartbreak. But what if we didn’t? What if we put our trust in them? What if we took that leap? It could be epic, phenomenal.. Amazing. I know it’s not easy, I know we’re scared, but maybe, just maybe it’ll be worth it. I sit here, tears in my eyes, pouring my heart out. Please, don’t let your insecurities win, please face the fear, please find love and hold on to it. It’s ok to be afraid, it’s ok to be scared, but don’t let it ruin your relationship. I’m trying not to, i’m trying to overcome them.

 

 

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I’m a unicorn…

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It’s summer time!!! Time for heat, beaches and pool! Summer is probably the worst time of the year for me due to the heat. It’s been quite the summer! So much as happened! Who else has a hard time during the summer? Anyone have any special plans this summer?

My son has been battling a post viral rash for the last two months. He actually tested positive for a past Epstein Barr Virus infection. Like Whoa! However, his rash, It’s finally gone!! Yay! Just in time for his surprise vacation! I can’t wait to post pictures from out trip! It’ll be so exciting.

It’s been a rough few months. My feeding tube has been problematic, or more my body has been. I’ve had reactions to the formula, bandages, gauze. It’s just been alot! Finally we’re doing pretty good. I’m still about 800-1000 calories short a day, but i’m slowly improving, however I still keep losing weight. My GI team is fairly positive I also have intestinal-paresis as well. Which just makes things even more fun..Not! Lactulose and I are buddies now! LOL  I got my Mic-Key GJ button last month, it’s been alright, the only thing is, I can’t vent my G-tube. Which really sucks. I’m also pretty much tube fed at this point. My body simply can’t tolerate any foods! I do try to get some ice cream a night though, as it’s one of the only things I can semi handle.

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Mic-Key GJ
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Weight Loss

As you can see, i’ve definitely lost a good amount of weight. I think i’m down 15-20lbs. And sadly still losing it. I’ll get it sorted, i’m determined!

Now, here’s a bit of good news!!! Living With Dys, has been nominated for a WEGO Health Award!! How exciting?! I, myself have been nominated for three, so that makes 4 nominations for me. I’m amazed at it all. I feel so honored and blessed. If you’re interested, check out my nominee page: https://awards.wegohealth.com/nominees/18307. IMG_0738

How great is this? What are your thoughts on it? What would you like to see more of?

I saw my geneticist Wednesday. I was not prepared for the results that I received. We did complete genome testing. It’s been about 5 months waiting for the results. Well, boy was I surprised, well kind of not really. My results showed I have a genetic mutation in the COL4A4 gene, which controls the Collagen Type IV basement membranes. I don’t just have a genetic mutation, I have the ONLY documented case of this variant. Literally the only one. I’m not even a zebra anymore, i’m a darn Unicorn. 246x0w My geneticist point blank told me, as of now, there is NO ONE to help me. No one knows what this mutation can cause, or what it can do. They’ve never seen it before. He’s advised me to seek out Duke and Johns Hopkins Research Department if they’d take me on as a patient. I did reach out to them this morning. It’s terrifying. Being told there’s no way to help you, that we don’t even know what’s going on or what can happen. It’s just overwhelming and so scary. I have low frequency hearing loss, and hearing loss is common with other variants of this gene. I’m being fitted on July 24th for hearing aids. I’m 33 and getting hearing aids… It’s just wow.  My rheumatologist, whom I absolutely adore, felt so bad that there’s nothing he can do to help. He still feels somehow MS is involved, he also mentioned Duke or Johns Hopkins is where I need to go. So if that’s where I have to go, that’s where i’ll go. What’s scarier to me, is it looks like I’m a carrier for this genetic mutation. My first question to my geneticist was,”How does this affect my son?” My son will have to be tested, as does my mom, to see if she has a milder version of a variant, or nothing at all. The change my son has this is overwhelming to me. It’s scary. I’m determined to become the absolute best advocate I can possibly be. I’m going to make noise, and i’m going to be heard. Someone has to be willing to listen and help me! Be ready y’all. It might get loud!

Yes.fit… who’s heard of it? They do virtual races. You do them on your own pace. It’s great. Cycle, walk, swim. Any steps or movement counts! I did one recently, and completed it. It was nerve wracking, and I did it completely at my own pace. We should definitely do one together! Motivate and empower each other! Who’s with me?!

Alright… Now I want to do a few live events, talks or chats. Who would like that?? My etsy store has also expanded. How exciting? New shirts, i’m focusing on empowering and positive messages!

In the midst of all this, I’ve been really struggling with my insecurities. It’s been very hard to see past them, and overcome them. My friends have been os supportive, it’s meant the world to me. My counselor has helped me to focus on positives and do thought stopping exercises. My tube doesn’t define me, it doesn’t change me. I lost sight of that. I’m slowly finding my way again. We often can lose sight of this when struggling, it’s important we focus on ourselves and self care. Feeding tubes, ports, Piccs, mobility aids don’t define us. Using them, having them doesn’t change our identity. Our identity is not rooted in our diagnosis. So many lose sight of that, so many let their diagnosis become their identity. Hope… we’ve lost it, let’s find it! join my facebook group, “Finding Hope”. Let’s lift each other up, and encourage each other!

 

Now my beautiful readers, Go Shine. Don’t let your sparkle dull. Be the absolutely best you, that you can be!!!!

You are not a burden…

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I’m sorry I’ve been absent for the last few months. A lot happened and I’ve been trying to process and deal. My gastroparesis has become a complete nightmare. On top of that I had to move unexpectedly. All this caused some major emotional distress and resulted in a depression/anxiety flare from hell. Lots of therapy sessions, crying and talking it out has gotten me back to a good place.

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In March my gastro team decided a feeding tube was necessary. I wasn’t getting the nutrients i needed, and was becoming malnourished. I was barely eating anything. I couldn’t tolerate solid foods, nor liquids. I was averaging maybe 1000 calories a WEEK!!! This wasn’t good, not at all. My gastro team had suggested a J-Tube in November 2018, if things worsened. I wasn’t ready for that. I was scared. However, I knew I needed help, I needed something to help me get the nutrients my body so desperately needed. So, it was decided March 11th, I’d get my J-Tube. I was going to travel to my gastro team in Tampa. I discussed it with my dad, and made the plans. We talked Thursday, I explained to my dad how my levels were dropping, and I was becoming malnourished. He said he didn’t like the idea of a feeding tube and it wasn’t able to him until I was 105lbs. What, 105lbs, i’d be dead or nearly dead at that weight. However, he said he’d help and watch my son for the two days for me…

Unfortunately things changed drastically that weekend. Things changes as such that I had to move unexpectedly and within that week. I  called my best friend Emily on the way home. She came and talked to me, leant me her shoulder. I had days to move. I needed to coordinate packing and moving in just a few days. I can’t lift furniture, I can’t over do it.. Yet I had no choice. My friends Chelsea, Emily and Aly rallied around me that weekend. Chelsea spent two days with me, just days after she had surgery. She was there, helping me pack. Sorting through everything. By Sunday, I had a lot done. We had help to move my furniture into storage. I moved as much as I possibly could into storage. I called my mom, we coordinated my move there.

Through all this I had to cancel my surgery, no J-tube for me. I had no time, I needed to move and get things settled here at my Mom’s.  The emotional toll was heavy. This sent me into a flare, this made me feel unworthy, a burden. This made me feel so low and unloved. This affected my relationship with many people. If my dad could turn his back on me, who else could??? Sadly this affected my relationship, and still is to this day. I’ve been doing therapy weekly, working through my emotions, feelings and everything.

While settling at my mom’s my gastroparesis just wasn’t cooperating. I couldn’t tolerate much of anything. It was bad. My mom saw first hand how I was suffering. I was scared, I was so so so hungry but eating caused such horrible pain, bloating and nausea. I couldn’t handle it every time I ate. I was so tired of feeling sick. Finally I caved. I called my gastro, I explained how things were. Bloodwork showed I was deficient in a lot, I was becoming malnourished. My weight started dropping. I was so weak and tired. My mom’s support meant the world to me. We finally rescheduled my J-tube placement for April 11th. We showed up that day, prepared for surgery. Finally i’d be getting the nutrition I needed. Oh how wrong we were. Sadly my surgery failed. They couldn’t place my tube. My doctor said it was like someone glued my intestines together. What he didn’t know was that I had stage 4 endometriosis years ago. I had it on my bowels. I had so many surgeries to deal with my endo. I cried, I was so confused. I felt so defeated. This failure led to my needing a surgical team to place it. My gastro was able to get me into the surgeon within days.

I met with the surgeon. I wasn’t prepared for that appt. He feels my entire GI system is failing. I’m having swallowing issues, and issues with my bowels. He’s concerned if my system is failing, what do we do?? He said my nerve damage/EDS/Dysautonomia has caused this massive storm within my GI system. I couldn’t even process it. We discussed feeding tubes, possible colostomy.. How, how could this be my life now?? It’s not fair. From that appointment, within one week we had rescheduled my GJ placement. April 25th… what a lot to process from that appointment. Feelings of being a burden popped back up, feeling abandoned. Just so many emotions to process. When we arrived to the hospital, i started getting nervous. Was I making the right decision? Do I really need this? I cried, my mom reassured me I was doing the right thing..We finally got my GJ placed, and sadly within a week, the ER broke it. This resulted in a 4.5 day admission to the hospital. It was ridiculous. The good though, getting the nutrients I need, finally was an amazing feeling. To use my tube, to realize this tube literally saved my life. It’s eye opening just how bad things were. Another few weeks and where would I have been?

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Through all this, I missed the comfort and support of my dad. He had no idea I was going through all this. I felt like a burden. All this, the lack of support, it takes a toll on you, both emotionally and physically. Not having the support you once had, it’s heartbreaking. It leaves you reeling, trying to figure out what YOU did wrong. I realized, this wasn’t on me. I did nothing wrong except try to let my parents know what was going on. I just wanted their support, compassion and understanding.

 

One thing that remained constant, my mom’s unending support and love. She rallied behind me, went to my appointments with me, we asked my team questions and made the best decisions for me. She’s been with me for every surgery, major diagnosis and through this entire journey. Her being a nurse has helped immensely. She’s helped me navigate this crazy stressful world of healthcare. She’s held me as I cried. Reassured me i’m still me, still loved and still beautiful. Each time I cried after surgery, she was there holding me, hugging me, lending me her strength and love. Having her in my corner has really helped me through this. She’s always been unwavering in her support of me when it comes to my medical care. Her here, holding my hand as I was prepped for surgery, then told it failed, was a godsend. Really, there’s nothing like the unconditional love of Mom. I’m thankful everyday she opened her home up to us, and has rallied around my son and I through this. I know with her, and my close friends in my corner, I can get through this. Je T’aime Maman.

 

I cried for days after my tube was placed. Every time I saw it I cried. Would I still be attractive? Am I still loved? Why? Why is this my life. I cried so much, I got so depressed. I decided to order a new bathing suit. Looking at myself, my body with this tube. Realizing this is my life. This is what is essentially helping keeping me alive. I’ve been through hell with my body. I’ve been through countless surgeries. Countless scars, 2 medical devices in my chest. Now I have one in my stomach.. This, this is alot to process. But you know what?? I’ve learned just how strong I am. I’ve learned i’m still me, I’m still a fighter. My scars tell a story, my body shows my journey. My fight for life. My fight and will to not let this illness destroy who I am. I’ve decided to embrace my tube, to live, to truly live.

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Me, with my GJ Tube.

 

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Rocking my new Tankini

 

This is the new me. The me that has to be tube fed due to gastroparesis, and intestinal dysmotility. It seems my entire GI system is malfunctioning. My Ehlers Danlos and Dysautonomia are wreaking havoc on my body. My levels were dangerously low, and I was malnourished. my weight was dropping rapidly. I fought hard to not get the GJ tube, unfortunately I had to make the best decision for myself and my health. I’ve struggled emotionally with this. I cried for two days every time I looked in the mirror. I struggled with the insecurities of this. This hasn’t been easy for me. I’ve lost friends, I’ve had family turn their back on me. I fight, I stand tall. The new me will rock this, I won’t be ashamed of it, for it doesn’t change me. It allows me to live. To get the nutrients my body so desperately needs. Without this, I’d be starving to death. And that isn’t an option. I look at myself and realize how strong I am. How hard I fight to never give up. This is Ehlers Danlos, this is Gastroparesis. Gastroparesis is a horrible disease, but i refuse to give up. My feeding tube saved my life. I’m going to embrace it.

I’m unstoppable. Most importantly, i’m NOT a burden. I’m not an inconvenience. I’m hoping to go back to school. Get my degree in Interior Design. I want to specialize in Handicap Accessible homes/businesses. All inclusive. I dream of having my own firm. I’ll get there. Some day. I’l do it, for i’m not giving up. I’m just getting started.. This phoenix will continue to rise from the ashes. My darlings, I want you to rise too. I want you to believe in yourself. Go after your dreams.  Don’t give those up!!!

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From a Spouse’s Perspective

 

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Last night as I sat reading an article on The Mighty, about partners of those that are chronically ill, I was hit with curiosity.  We hear so much of how being chronically ill affects us, but how does it affect our partners? How do they feel? What is this like from their perspective??   I quickly sent a text to my boyfriend, I explained I wanted to write a piece, essentially from his perspective. He said he’d love to help me. So, I sat down, typed out some questions and emailed them to him late last night. By 7:30am I had his replies.

Let me preface with this, we met in September 2011. He was there from day 1 when all of this started.

Without Further Ado,

From a Souse/Partner’s Perspective:

1) When at first when my health deteriorated, how did you handle or adjust to that?
I handled it like every other day and I don’t feel like I had to make any adjustments that I didn’t want to make on my own.
2) Did/Do you ever feel overwhelmed? If so, how did you deal with it?  
I never feel overwhelmed personally, but I do feel bad that you get stuck, probed and prodded regularly by nurses, and doctors. You’re shuffled from specialist to specialist, all while hoping for answers. 
3) Have you ever felt helpless? Being my partner and unable to fight off this monster of a disease.
No I don’t feel helpless because you’re the strongest person I know and if anybody can get through this, you can. 
4) What is the hardest thing you’ve had to face in dealing with my health?
I would say the pacemaker scared the living hell out of me. That’s dealing with the heart, so many risks with that. It was kind of hard to handle but you amazed me with how you handled it like a champ.
5) Do you prefer when I shield you from the bad days, or disease progression? Or do you want the truth of how things are?
I want the truth about how things are, no matter what, your love and well being are my first priority.
6) What is your biggest frustration in dealing with my health?
My biggest frustration in dealing with your health is that sometimes your attitude on life gets to me. The eating/drinking issues, you won’t do it some days because you know how sick you’ll be after. So you don’t want to do it. That you won’t do the feeding tube, even though you need it. You let your family talk you out of doing what your doctors suggest. You also don’t see yourself as beautiful, you feel like the feeding tube, will make you less beautiful to me.  Scars, or a feeding tube won’t make me love you any less, or see you any less beautiful and amazing. That’s really frustrating for me. 
7) Being a caregiver to your girlfriend, have you ever resented the role?
I never resented the role. It’s a role that I choose to be in, because I love you. 
8) If you could tell me anything about how you’ve seen my struggle with my body, what would it be??
Nothing, your body is flawless. Scars tell stories and you have a lot of stories to be told. Your never ending strength is amazing to witness. 
9) What’s the most vivid memory you have of dealing with all this?What memory sticks out the most?
The day you got your walker. I felt you used it as an excuse to give up on physical therapy, of getting better, stronger.. You have problems walking yes, you tire easily, but I could see that you wanted to give up, instead of pushing through to overcome it. That was hard for me to see. 
10) What’s the hardest thing you’ve had to deal with in regards to watching me struggle with my health?
When your self esteem drops. You’ve grown stronger in who you are, you’ve found your inner strength, your voice. You inspire people with your words, and your realness.  However, Nothing about YOU has changed, you’re the same person you were when I met you. You don’t see the beauty I see when I look at you.  That’s hard for me, that you don’t see what I see, what others see. 
11) If there was anything you could change about my health or how I see things, what would it be?
Your health does not bother me, but how you see things does. Open your eyes, look around, you have a lot to live for. You have a lot to be happy about. 
12) Have you ever wanted to walk away, leave? 
I didn’t think that was an option. A real man or woman would stand next to their partner no matter what.  
13) If you could give spouses/partners new to this any advice, what would it be? 
Work hard with what you got, and above all find happiness and peace within yourself.
Reading his replies, it really put things into perspective. It made me see myself with different eyes. This man, he’s loved me unconditionally for 7 years. He’s held me as I cried, he’s calmed my fears. He was there through cardiac ablations, my passing out, losing strength to walk. He’s seen the good, the bad and the hell. He’s seen me angry, cry, and grieve over losing my healthy body. He’s talked to me as I had convulsion like episodes, he calmed me when I was upset. He reassured me when I was scared. He was my strength when I wasn’t strong.  Most of all though, he’s loved me when I couldn’t love myself.  He’s watched me as I slept to make sure I was still breathing. His never ending strength and love have really helped me grow as a person, it’s helped me grow into myself. He’s encouraged me, embraced me, challenged me, and loved me. He has pushed me to do things I love, to do things i’ve dreamt of. He’s my steadfast rock, my cheerleader and my biggest supporter.
It’s not easy being with someone that has many health issues, but as he said, nothing about that person has changed. Love is love. Love them wholeheartedly. Love them despite it all. Love them through the good and bad. When they feel like giving up, lend them your strength, cheer them on. I assure you, your love, strength and encouragement mean everything to us.
So to my amazing, loving boyfriend, from the bottom of my bionic heart. Thank you for all you’ve done for me, all you do for me, and all you will do in the future. Your encouragement and love mean the world to me.
Grá Go Deo,
A

End of the Year… Reflection

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I’ve spent the last week or so reflecting on my year. My 2018 started out promising..it seemed to have spiraled a bit!

January was interesting. It was probably when I first started having doubt about getting married. By March, I was thinking of my ex boyfriend, dreaming of him more often, and really started second guessing the wedding. Though I pushed forward. My health was up and down. Dealing with Emergency laparoscopy in May, then a HUGE HIPPA violation at the hospital post-op. Which left me reeling, and extremely upset. May brought me un June, and my proteins levels in my urine were climbing, thus an emergency renal biopsy was done! This led to the discovery of my  having Thin Basement Membrane Disease. My nephrologist put me back on iv fluids, lactated ringers to be precise, 3 times a week.

The summer was busy with wedding stuff and keeping my son entertained. Dealing with my health and exhaustion. Spending time with my son. August prepared us for Back to School. August was the start of the spiral. I ended up canceling my wedding. Ending my engagement. So much has happened since then.  In, September I reconnected with someone from my past, someone whom I’ve loved for 7 years. October, November led to may seeing him for the first time in 5 years. What an emotional moment that was. It had to happen though, we both needed to see each other, say what we both needed to say to the other that we never got the chance to.  December led to health concerns, reconnecting with love, but most importantly time for reflections. It also led to my starting therapy. Therapy has been a godsend for me. It’s allowed me to really work through my emotions, and process it all. It’s a safe place for me to just unload my concerns, emotions and everything.

December also led to my son being diagnosed with Autism Spectrum Disorder, High Functioning. We suspected it, having some answers has been amazing, but learning and navigating things with him is hard. I’m determined to learn all can, and find ways to help him be the best him he can be!!! We attended a football and hockey game! He’s starting soccer, he’s excited, but he’s also well aware of how overwhelmed he can get. We’re trying to find techniques for him, to make things a bit easier. It’s a learning process, we’ll get through it.

I’ve spent the last few months reflecting so much. Reflecting why I made the decision I did all those years ago. I’ve thought that maybe I should leave again, maybe he deserves someone worthy, someone not sick.  I don’t want to be a burden. I’ve struggled with depression the last few months, especially the last month. Christmas was hard, for emotional and financial reasons. There’s days I feel like a failure as a mom. There’s days I cry at all I have to deal with. Days I feel like a failure as a girlfriend. My biggest biggest thing, is my self esteem. it’s such a struggle some days. There’s times I feel absolutely stunning, and others I’m like “WTF, what does he see in me?”… He tells me every day i’m beautiful, but he said this: “It doesn’t matter how much I say it, until YOU believe it for yourself”. How right he is, no matter how much he tells me i’m beautiful, it won’t matter unless I start to see it and believe it! My depression is sinking, it’s swirling around me. I sit here and cry wondering how I left 5 years ago, how I walked away from someone that loved me so unconditionally. I’ve become stuck in that loop. Instead of seeing he’s here, he’s still loving me, i’m stuck in the why, i’m stuck on the feeling like an annoyance, feeling like a burden. I know i’m not, but sometimes, in that moment it’s hard to see past it. It’s a struggle lately, a struggle sometimes I can’t overcome.  I refuse to walk away again, no matter how string the fear is, no matter how scared I am. I can’t walk away from him again. If I do, i’ll lose him forever, i’ll lose my heart.

This year was full of struggles, full of hard decisions I had to make. Full of trials and tribulations, tears of pain, tears of laughter, tears of love. Ending my engagement, but finding my way back to someone I loved so fiercely, it’s scary.  I’m working to let it all go. I can’t control everything, I can’t control the future. What I can control, is myself, my feelings, my reactions. I control me. I am choosing to let go of my insecurities, to let go of my fears. I’m ending 2018, i’m ready to let it all go. Let all the hell of this past year go. Let the self esteem struggles go. I’m choosing to wake up tomorrow, Jan. 1, refreshed, and on a new page for the next chapter of my life. I’m choosing to live, to be happy, to be loved! I’m choosing to let go of negativity, to let go of those that don’t bother in my life. I’m choosing to surround myself with supportive, loving, understanding people. I’m writing my story, i’m sharing my soul. For I have so much I wish to do, I refuse to be held back any longer by my fears or my insecurities.

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2019 is going to be my year. My year for laughter, for friendships, for love, for inspiring others, for travel. 2019 is going to be the year I decide to move past the fear, and fully embrace who I am, fully embrace the past that I can’t change, fully embrace the future that is yet to happen. I am choosing to end 2018 by letting it all go. I choose to follow my path, be positive, happy and loved! I am choosing to let go and let God. If I don’t let go of the fear, I won’t live. I won’t accomplish anything I wish to, for the fear is holding me back.

I’m loved, i’m blessed, and without a doubt, you all are loved as well. You’re never alone. If you ever feel that way, reach out to me, I will listen. I will be here. Together we can build each other up.

Be you! Be Fierce, but most importantly, be true to yourself. Never give up your hopes and dreams. Lets all start 2019 off full of hope, full of dreams.  My story is just starting…stay tuned…

 

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My new reality…

 

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I’ve been dealing with health issues. My gastroparesis has flared to a hellish point. It’s become extremely problematic, to the point i’m hardly able to eat, and i’m living in constant severe nausea. I’ve lost weight, most haven’t noticed because i’m wearing baggy clothes to hide how much I’ve lost.

However, things have come to a head. My kidneys are struggling, my POTS is out of control, and i’m beyond exhausted. I’m malnourished and not absorbing what I need from the food I am eating. Last Monday I saw a specialist 3 hours away. My best friend Jen was with me. She held my hand, and rubbed my back as the doctor told me, I need to accept this particular procedure I need done..a feeding tube. A J-Tube to be exact. I cried, I immediately had a moment of panic.

The doctor said I’m basically starving…. Now you may ask, how did no one notice? How did no one close to me realize this?? Simple, I’ve kept just how bad things have gotten to myself. My family didn’t know, my best friends didn’t know. Only one person had an inkling, he knew something was wrong beginning of November, but I tried to seem fine, I tried to brush it off. Until I couldn’t. Now things have come to a head. Things are bad, but we can still salvage it. There’s hope, I just have to push like hell to turn it all around.

Today as I sat in my local gastro’s office, we made a plan. A new Gastric Emptying Study, another endoscopy, then we do the J-Tube. I need it done soon, before I land in the hospital. I’m scared, i’m angry, I feel so alone. My family hasn’t been very supportive the last few months. I’m basically coping with all of this and more on my own, and a few, select friends. I texted my best friend telling her this is why I walked away 5 years ago from a relationship. I didn’t want to be a burden, I didn’t want to drag him down this hell with me. 5 years ago I walked away from someone that loved me unconditionally because I didn’t feel worthy. Today, I had the momentary panic of doing it all over again. We came full circle 5 years later, and here i’m facing this hell. I’m facing my body failing me, but I can’t make that decision for him. Not this time.

Why did I panic? I felt unattractive. Realizing i’ll have this tube sticking out of my stomach, and an iv in my chest, it was too much. Why would someone want to deal with all this? Why would someone put up with all this? The answer is so simple..Love. However, I am still so scarred from  the abusive past I had, i’m still insecure in moments, I get stuck. Now though, i’m tired of it. I’m tired of letting my insecurities rule me. I’m fierce, i’m strong, i’m witty, I have amazing eyes. I’m beautiful. I’m me. No one can build me up, but me.

“You will be sexy and beautiful no matter what.”….. thats the text I got when I shared my concern with him. I’m so stuck on seeing it all as bad, he’s busy seeing me a a warrior, a fighter. He’s busy seeing PAST it all.
So, while I fear living with a feeding tube, i’m determined to own it. I’m determined to rock it like a damn pin up model. I’m determined to let go of my insecurities and live life, and love life. More importantly, to love myself and my body. I’m determined to find a photographer to work with me, and rock some pictures. Some might find it odd. Me? I find it empowering. This feeding tube is literally my lifeline right now. I need this, I need to let go of my fears, my insecurities and do what I need to feel confident. Having a feeding tube doesn’t make me unattractive. It doesn’t make me less of a person. I think as patients we can’t see the good, we can’t see our beauty. We’re too focused on the bad, too focused on what makes us feel bad, unattractive.  Let’s break the cycle. Let’s silence those thoughts. Let’s lift each other up, lets build ourselves up. We’re worthy, we’re beautiful and amazing. We’re so much more than our health. We’re warriors, we’re strong. We deserve all our hopes and dreams.

So dream, love and live!! Let’s work together to let go of the negative and embrace what we do love about ourselves… Lets create a community of being empowered.

Be+Empowered

What do I love about me??

  • Fierce
  • Strong
  • Independent
  • loyal
  • Caring
  • Supportive 
  • Witty
  • Funny
  • Inspiring 
  • Ambitious
  • Hopeful
  • I’m beautiful.
  • I’m me.

Be Fierce..Be Strong, Be YOU!!!

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Now I choose to live…

**Trigger warning. **

 

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The past month and a half has been incredibly difficult. I was supposed to get married, but things were called off. They should have been months ago… Ending a 2 year relationship and engagement wasn’t easy. However, the warning signs were there. The red flags were waving. I ignored them till i couldn’t anymore.  I made the best decision for myself and my son. I will not crumble or yield. I will not apologize for making the decision i did. I didn’t ask for emotional abuse or manipulative behavior, and I sure as hell won’t put up with it.   At first I was angry.. Now, I’m ok. I’m at peace with my choice, it’s been months in the making. I shouldn’t have let it get so far. My choice was the only one to make.  I know there’s anger on his side, but I needed to do what’s best for my son and I. I won’t apologize for that.

Emotional abuse is hell. Manipulative behavior is hell. Being made to walk on eggshells day after day so you don’t set them off, is hell. Suicide threats when things go south, or not getting his way.  I can’t live like that, I shouldn’t feel guilty for my feelings. But I was made to feel guilty. Constantly apologizing, constantly on edge watching what I say. I couldn’t be honest, because it turned into an argument, all the time.  Not to say we didn’t have good times, because we did. We had a lot of them, but those don’t outweigh the red flags. They don’t outweigh the potential for things to go so bad, so quickly. Sadly, they did. It was toxic. There was no fixing it. Lies and Deceit, and anger have no place in my life.  I put on a fake smile, and on facebook everything seemed perfect. Everything seemed fine… However a few were able to see past the facade I had in place. They saw behind the mask I wore.

His actions, and the stress led me to having a drink, then another. The first time in 10 years.. That night a phone call gave me a wake up call. (no one was injured. Just a blast from the past) That person knows me better than anyone else. He immediately understood my struggle, he understood my pain. He made me realize that this slip..it’s not me. I allowed someone else’s actions to break me. To break my strength. And that is utter bullshit. Two more nights, one drink each night.. Two more nights… I realized, while staring at my wedding gown that this..this relationship had been toxic. That I hid who I was. I let my strength die. My inner light dim. My friend caught onto it all. He reminded me of my strength, of who I am. Who and What I can be. He reminded me of the Phoenix within me. The power I always held. The dreams and hopes i’d always had.

My life has been difficult the last few years. Between my health, and other personal issues. My health has led to insecurities, and fear. It’s led to anxiety and depression. Through it all, I forgot to live. I just merely existed. I tabled my dreams, my goals, my ambitions, my faith and my hope.. Why?? Why did I do that?? Why did I hide part of myself? Why did I feel the need to?? There’s so many reasons. Reasons i’m not ready to share yet. Perhaps soon. I’m at a point where i’m almost ready to share it.. To bare that piece of my soul.

For now though, now i’m tired of just existing. I’m tired of not living!! I’m tired of being prisoner to my body! I’m tired of tabling my hopes and dreams. I’m tired of hiding who I am, so I don’t intimidate anyone. No more, More more will I just merely exist. I’m choosing to live. I’m choosing to travel. To love..oh to love fiercely… To smile.. Most importantly, to be happy! I’m choosing to not just exist. I’m going to live life to the fullest. I have faith, and hope.. With those anything is possible.

 

#imaphoenix, #spoonie, #emotionalabuse, #imstronger #iknowmyworth, #dontignorethesigns

 

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Down the Rabbit Hole..

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This post is going to be raw, unfiltered, and real. This is me being laid bare.

Devastation, anger, betrayal, relief… those are the emotions i’ve felt in the last week and a half. Watching my future plans just fall apart. I’ve been so strong for so long.. When will someone be strong for me? When will I be held and told it’s ok? I’m angry, i’m SICK of being stronger. I’m so damn tired of it all. I’m damn tired of battling my body. I’m tired of battling doctors for help. I’m tired of not being able to eat. I’m tired of wanting another child, and seeing my hopes and dreams fade away. Most of all I’m tired of my self doubt. I’m tired of worrying i’ll be a burden to someone.  I’m just tired…

No one understands my anger, my fears, my insecurities. I don’t want to be a burden. I want to be a wife. I want to be someone that my spouse is proud of to have as a partner in life. I want to inspire others. I want that, and I deserve it. However, in my lowly depression I CAN’T see that. I can’t see I deserve it. I can’t see how others see me. I can’t see myself as inspiring, or real. I am so scared of not being enough for someone. I’m so scared that years into a marriage or relationship my partner can’t handle it anymore. Will it be when I can’t give them a child? Will it be when i’m dislocating my hip during sex? When i’m hooked to an IV multiple days a week? Will it be when i’m in a wheelchair? I am so terrified of NOT being enough. I want to be enough.

I call my depression my rabbit hole. Falling down the rabbit hole.. It’s never good. Sometimes it’s a quick visit… sometimes it’s longer: days, weeks, months. I feel it swirling around the edge of me. The darkness becomes soul crushing. The depression yearns to take over. I’m stronger than this.. but at the moment, the darkest is tempting. This rabbit hole, this spiraling blackness, we all have it, just varying degrees. Some are masters of their depression, while some succumb to it. It’s our character, our strength that decides that.

Strength…we all have it. Control…we all want it. What if we submit the control? What if we submit the control to acceptance? Acceptance that this battle will not end, but that this battle will not END us! We yearn for control of our life, our emotions, our everything. Really though, we have no control. When I feel out of control of my emotions, I get scared, I tend to “run”.. I tend to become so seized up with worry, and fear I can’t handle and process these emotions. I simply shut down..It’s a defense mechanism. I can’t help it. I try, I try not to shut down, but that swirling darkness… that old peaceful friend of mine.. yeah it’s tempting. The silence, the peace I find there by embracing it is a welcome reprieve from my overwhelming emotions.

Ahh… that swirling darkness, with the taste of yearning, longing, peace.. but it’s fake peace. I know it. You know it. Everyone with depression knows it. However we still welcome it like a comfort blanket. Why? Why do we do this??  Perhaps it’s because we feel no one actually cares how we are? No one wants to hear us yell, scream and cry our feelings out. We need to do that though. We need to purge them. We need to stop faking that we’re ok. It’s ok, to not be ok. We’re so afraid of someone seeing the crack in our armor, we hide it. We’ve become masters at hiding it. I’ve mastered that skill. I’m so tired of hiding it. I’m so tired of faking it. I’m so tired of the lonely darkness swirling around.  Our partners don’t understand, our family doesn’t understand. We do though, we as warriors understand each other’s battle.  That taste of peace we find in the darkness, it calls to us. It sings the song of a siren. It beckons us. Resisting it, it’s not always easy. It’s not always to see the light in the darkness. We can’t see the wonderland through this darkness of a rabbit hole. We, in our swirling peaceful darkness can’t see the light. We need to always remember, light will ALWAYS come. Light will always shine. The sun will always come after the storm.

We all go though ups and downs. We overcome them. We go through relationships, friendships and family issues. How we handle it is what builds our character.  We can fall apart, we can break down, but from that we need to find our strength and rise again. Stronger, and wiser. For we are The Phoenix. 

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From a child’s eyes…

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Hope you all are well!! I’ve been busy with summer break and had a few health issues. Hopefully we’re heading into right direction now!

This post I wanted to do something different. My son is super excited to be a part of this!  He has such a heart of gold. He’s so compassionate, understanding and just amazing. He is a big help. When we go out to eat, he asks the waiter about peanut oil, and such due to my severe peanut allergy. He makes sure it’s safe. He’s my little big helper. I see he gets upset sometimes when I can’t do things other moms can. I can’t walk through Disney, or go play soccer with him. I can’t go sit at the beach all day due to my heat intolerance.

As much as I know he’s a happy child, I really wanted to know his view on all this. How he sees it. So I sat him down and did an interview with him. He’s super excited to be apart of this. He’s also wanting to record a video, which we will be doing today or tomorrow and uploading. Without further ado, here’s his answers.. Here’s what it’s like from a child’s eyes..

From a child’s view..

1) When I first got sick, and had to adjust to doing things, how did you feel about that? I got sad, because you couldn’t do fun stuff with me anymore.

2) Have you often felt overwhelmed? If so, how do you deal with it? Sometimes. 

3) Do you ever feel angry? If so, why? Yes, Because you’re always tired, we can’t ride bikes or play soccer.

4) What is the hardest thing you’ve had to face in having a mom that is chronically ill? That you’re always tired. That we can’t go to Disney or the beach. That you can’t walk around fun places. Even if you use a wheelchair, I don’t care, I just want to go to fun places with you.

5) Do you prefer when I shield you from the bad days? Or do you want the truth of how things areSometimes I would prefer you to lie about the bad days, sometimes be honest. If you could give parents and kids new to this any advice, what would it be? For kids, Journal your feelings. Be honest about how you feel. Adjust to doing things at home. We play board games on bad days, we read together, watch. movies. We do what we can together.

For Parents: Your child will get angry, but understand their feelings, and talk them through it. Find things to do at home together that’s low energy. Make memories together. You don’t have to go somewhere to make good memeories.

6) If you could tell me anything about how you’ve seen me struggle with my body, what would it be?? You’re a good mom, you do everything you can for me. You make sure i’m happy. And You need to use your walker more, dad says so too.

7) Do you know how much I love you? Yes, I do.

 

Well, that was enlightening. He’s wise beyond his years. He’s honest, and understanding. We trying to hide things from our kids, to protect them, but maybe that’s leading to more anger, more resentment. We should open a dialogue with them about it. Explain what we can and can’t do. Most importantly, make memories together. He’s right, you don’t have to go places to make memories with them. We do movie days/nights. We play silly games on the iPad. We play board games. We find ways to create those memories that we will both cherish.

I know our health can take a lot from us, but it’s not just us that it’s affecting. Often times we push our bodies to exhaustion, pain and till we simply fall. We need to stop doing that. That does more harm than good. We need to listen to our bodies, we need to adjust what we do to be within our limitations. We need to adjust and adapt to what we do to have spoons to make these precious memories with our kids. I know it’s not easy, I know there will be trial and tribulations. There will also be laughter and joy. Our kids don’t need expensive things, or expensive trips. They need us, they need our attention, and time. Simple things can make great memories.

 

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Going Ghost..Don’t do it.

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This is going to be raw, deep, and i’ve held it in for so long, I need to tell it.

Two years ago I went “ghost” as my best friend calls it. She had just been through hell, she needed me, and I just fell of the radar. I wasn’t the friend that I should have been for her.  I was going through such a dark time emotionally and mentally. Instead of leaning on my friends, I just pushed everyone away. “Going Ghost” caused me to lose one of my closest friends, and nearly lose my best friend. It’s now 2 years later, and I’m still recovering from losing my friend, and from my friendships changing..

I had been dealt a blow with my health, told i’d be an idiot to have another child, that I need to get a hysterectomy. That i’d eventually end up in a wheelchair. That my immune system was weaker than we thought. I shut down. I became angry, bitter, depressed. It was probably one of the darkest moments in my life.  My family rallied around me, told me not to shut them out, not to shut my friends out. They all tried to get me to see the light, but I couldn’t. I was in a never ending battle with anger, grief and feelings of being a burden. The darkness was soul crushing. Constant drowning in emotions I couldn’t understand or even verbalize.

Being a burden..i’ve said that more times than I can count to my family, my friends.. I’ve thought they deserve so much more than this sick person, draining them mentally. They didn’t need a burden. We’ve all thought that in this journey. This diagnosis, whatever diagnosis you have, we’ve all felt that way at some point. We’re not a burden, never think that. My biggest piece of advice, take to your spouse, your family, your friends when you start to feel that way. Listen to them. Share your worries, fears, goals. You are NOT your illness. It doesn’t define you.

Grief… We all deal with grief differently. We all grieve different things. Those of us that can’t work, we grieve that, or not being able to walk, have children, that extreme changes in our lives. These are all life changing things, these are all things we can experience grief over. Don’t let it consume you. Please. I did, and it caused so much damage.

I put up a front, I pretended i was fine, my dad saw right through it, so did my boyfriend. Finally everything came to a head. I missed important things in my best friend’s life. I can’t ever get that back, I can’t ever get a do over. That’s something that sticks with you. I decided to seek counseling. Through my sessions with my counselor, I learned so much. I learned coping skills, I learned that leaning on your friends is an amazing thing, friends are there, they love you. I learned I can’t control everything, I can’t shut people out like I was. More importantly, I learned it’s OKAY to grieve your old life, grieve who you were, and what you could do, but that you should rise from the ashes like a Phoenix.

We always try to protect others from our moods, our bad days. That doesn’t help, that in a sense can make things worse. Shutting people out hurts not just you. I look back and realize had I let my friends in, let them know the darkness swirling, they would have cared! They would have been there. Instead I acted like I was a burden and shut them all out. I can never apologize enough to those I hurt during that time, to those I lost their friendship over it, it’ll always be something etched in my heart. All I can say is that I wish I could have done it differently, but when you’re in such a dark place, you see NO OTHER options.

Depression, anxiety, anger, grief.. We in this community experience these. We need to not shut people out. We need to not feel ashamed for feeling these emotions. Going thought the motions won’t help, it’ll drag you further down. Lean on those closest to you, reach out to me if you need to, but please don’t bottle it all up. It will eat at you, it will hurt you. It’s ok to feel broken, it’s ok to feel pain, anger, bitterness. Let it strengthen you, let it transform you from the ashes into a beautiful soaring Phoenix. You are a warrior, you are beautiful, strong, amazing. YOU are YOU!

 

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