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.

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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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Facing my Past, My Heart

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My last post I mentioned about the story I wan’t ready to share…Today i’ll share that story.

Seven years ago I met a man that would unravel my world. This man, He awoke a part  of me that I didn’t know existed..

He was there every step of the way.  From the very beginning of my health failing, he was there. We grew closer, we grew to love one another. We always laughed, we always touched. We always had to touch. He was everything to me. Our love was on a level I’ve never witnessed or felt before.  I opened up in a way I never had, just as he did to me. He held this aura about him. He took care of me in a way i’ve never experienced. My last relationship, i’d been so used to hurtful words, insults. This caring, and loving, I wasn’t used to it. I didn’t know how to act, how to handle it. (This is important). I loved the way he was there, he was my partner in all ways. See, everyone knew of the love we had, everyone knew what we had was on a level rarely seen. We were “Noah & Allie”.. we were a perfect match, in every way. He challenged me, encouraged me, supported me in every way.  It was him that convinced me to write my journey. It was him that encouraged me to go back to school.  

We grew so close, so quickly. We became so important to each other. We needed each other. We loved one another in a way that’s once in a life time. In December 2011, I collapsed while at work. Something was wrong with my heart. I was scared. I remember calling him as I was being loaded into the ambulance. Something was wrong, and I didn’t know what it was. We found out, I had SVT, and I had hit nearly 200 bpm.. My life now consisted of doctor appointments, tests, and medications to control it. In January nothing was working. I was rushed into surgery, a cardiac ablation. He held my hand as I waited to go back. He and my mom were with me. He was always there. Waking up in recovery, seeing him still there, was a relief. We hoped the surgery would be a success. We prayed. By middle February I was collapsing, I was short of breath. It turned out, the surgery didn’t work. I was rushed back in for another surgery. This time, I was getting a pacemaker. As a result of missing so much work, I lost my job. I didn’t know what to do. My mom lived 6 hours away. My dad was in Florida, and here I’m in Virginia. Unfortunately we couldn’t move in together at that time. What was I to do???  My guy, He thought of a plan. His plan, I should move in with my dad. Better doctors for me, better medical care. I didn’t want to. I was so scared… Losing him, it wasn’t an option. Losing him would be like losing part of myself. Though, I knew he was right. If I stayed in Virginia, I’d deteriorate. With a heavy heart, I packed my apartment, hired a moving truck. Started the long drive to my dad’s house In March 2012. Moving back in with my dad was hard. I was 25, with a child. I shouldn’t be back here.

The next year and a half we traveled to see each other. He always made time for me. Our last trip was life changing. That trip led to me making a decisions that affected us both. There was no discussion. There was nothing. There was me making the decision..  As I recall the memories, my heart aches. Sadly, my decision was that I walked away.. 5 years ago I walked away from someone that meant the world to me. 5 years ago, I ripped my heart in two. The pain, the heartache was soul crushing. Losing him, through my fears, my insecurities was hell. He had no idea why I walked away. He didn’t know the last time I saw him would be the last time. He didn’t know the fear that was in my mind, in my heart. Instead of talking to him, like we always promised to do, I simply turned my back and walked away. Destroying both myself and him in the process. He reached out to me repeatedly, for months, for years.. I ignored him. I didn’t listen. I couldn’t cope. Instead I buried it all. I buried all my emotions for him. I buried my confidence, my strength, my personality. Essentially, I buried myself.

Did it work?? Somewhat.. every day I thought of him. Every day it ate at me. Every night the dreams, the memories haunted me. The regret i’ve held is immense. He reached out to me a year ago in June 2017. I was at my best friend Jen’s house.. I got an email from him, read it and couldn’t cope. Jen tried to get me to email back, to listen to him, to talk to him. I couldn’t. I refused.

I tried to move on. I tried to bury my love for him. I tried to bury myself. I did a good job too, until it all blew up in my face. After ending my engagement, I thought of him. I needed to talk to him I needed him to know I almost made a mistake. I felt this overwhelming need to talk to him.

On what would have been my wedding day, I finally typed that reply to him… after 5 years. My heart pounded. Would he reply? Would he ignore me, as I ignored him. It took nearly 11 hours for a reply. After that reply, 3 hours after that we were on the phone. When I answered that call, it was emotional. It was instant tears.  There’s no way to describe what I felt. There’s no way to describe what I felt for him. “Hey you”..was all it took to unravel the carefully constructed walls around my heart… “Hey you” was all it took, for every memory to flood me, for every emotion to pour into me, for every “I love you” to fly back into my mind. My world unraveled that night. But really..it unraveled 7 yeas ago when we met.. 7 years ago when I said “I love you” after he brought me donuts to my office, and I said it for the first time. 

That night.. We talked, I mean really talked. Losing me nearly destroyed him, just as my losing him nearly destroyed me. That phone call shook my entire foundation.  I cried, yelled, raged once we hung up. My mom held me on the ground as I cried, letting 5 years of anger, betrayal, longing, regret and love out.. The rage, the resentment, the regrets I’ve held. I still hold. He asked me why.. why did I leave? This answer isn’t an easy one, but here it is.

I let my health be a part of the reason I walked away. How do you walk away from someone that means so much to you?? Let me tell you, it isn’t easy. It’s painful. It’s emotional, it’s rage it’s overwhelming fear. I knew my health issues, weren’t an issue to him. He cared about me, and wanted me, regardless of whatever health issues I had. He was caring, loving, supportive. I’d never experienced that. It scared me. I didn’t know how to cope. This love, this supportiveness, this encouraging partner, I didn’t think I deserved it. I didn’t think I was worthy. I didn’t want to be a burden to him, I didn’t want to hold him back. So, I simply walked away. Hurting both of us in the process.

We’ve talked every day since we reconnected. He knows me better than I know myself. Even after all this time. I wondered, If we saw each other, will it have fizzled, or will it all still be there, but stronger. Well i’ll tell you… It’s still there. Stronger than ever. Seeing him after all these years was emotional. Being in his arms again, was liking coming home. Hearing him tell me what losing me did to him, made me sob. This big, strong man loved me sooo fiercely. He stills loves me. This man, even after I left, continued to love me, continued to have hope that i’d come back.  It took me a while, but I came back.

I don’t know what the future holds. What I do know, is i’m not running again. I’m not walking away this time. I’m standing firm, facing him and all these emotions head on.. I know what we had..what we could have.. It’s something others dream of.. He was my one… 5 years later, we’ve found our way back… As much as losing each other hurt, I think we needed that time.. We needed to grow as individuals, before we could grow as a couple..I needed to know my worth.  I think it was the right person, just the wrong time. We faced so many obstacles at that time.. He’s never been far from my mind, he’s never been far from my heart.

I’ve spent the lat two months doing so much reflection. So much thinking. So much realization. Realizing I hid my dreams, my goals.. I hid myself for the last 2 years..Well technically the last 5 years. Why?? Why did I bury myself? Why did I lose myself? The fury, the rage took hold of me.. I gave up so much of myself. I lost so much of who I am.. Who I was.. I want me back. I want to be me again. Bright, confident, happy. I’m working on rebuilding who I am. Rebuilding my strength, my confidence. I’m going to rebuild myself stronger. I’m chasing my dreams, my hopes. I’m not giving up. Not this time.

I am beautiful, I am strong, I am a warrior. I won’t ever lose sight of myself again, for i’m rising from the ashes of who I was, to become who i’m meant to be. Stay tuned, for this warrior is just rising from the ashes and will be stronger than ever.

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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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Self Esteem Struggles

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  As I scroll through the many dysautonomia groups i’m in, I notice a recurring thing.. Quotes, concerns and just venting about relationships, self esteem, sex. So many of us go though relationship break ups, marriages, fertility issues, hard decisions regarding dating, or just to have children. We all look to each other for support and guidance. However, i’m noticing a distinct lack of community for these topics, and it’s disheartening.

Lets really delve into this. Being chronically ill, we deal may deal with fatigue, wheelchair use, mobility aids, allodynia, hair loss; many others things that affect our self esteem. We may have had horrible dates, or our partners leave us. Guess what? It’s their loss! You’re a warrior, you’re stronger than you think! Most importantly, you are NOT alone. We’ve all been there.

I’ve struggled with self esteem issues for years, i’m not ashamed to admit that. I struggle to like my body, weight or smile. I’ve struggled to see what others see. In the last year, through counseling and the amazing support of my family, I’m starting to see what others do. I used to worry I wasn’t skinny enough, or pretty enough for some. I always felt I had to overcompensate for it. I hated dating, and the inevitable questions like: “Do you work out?”; “Do You work?”, or my personal favorite “So you just read all the time?Like you sleep all day? That must be nice.”   No, no it’s not nice to be so bone tired all the time! It’s not nice to take a shower and then feel like you need to nap!

Dating was anxiety ridden hell at times. You know what though? I had faith that at some point, it’d be worth it. That there is someone out there that was willing to be my cheerleader, rock and partner through all this. It didn’t happen overnight for that realization to come to me, it took a while. That shift in outlook isn’t overnight. It takes time. Time to realize that you, my darling reader ARE worth it. You  deserve all the happiness. Your health doesn’t make you worth less!

Sex… yes sex.. We can all chuckle at that for a minute! With our lack of energy, self esteem, and health greatly affects our sex life. Let’s not hide, or not discuss it. We need to discuss it. We are all adults here (at least I hope everyone is). We want to feel that intimacy with our partners, the desire. Though, I can guarantee you, that there’s times you feel it’s a chore. No! Don’t think that. This is a way to increase intimacy snd strengthen your bond with your partner. It’s important to find ways to do this. Difference positions, are important. Communication is key. Communication is vital in a relationship. We’ve all felt less desirable at some point due to our health, don’t hide it. I’m a firm believer, though I know not everyone is, that sex is important in a relationship and maintaining intimacy. Communicate this with your partner, more importantly, listen to them. Adjustments, trial and error are vital in finding what works best for you as a couple!

 

Kids.. some want them, some don’t. I have a son. I’ve always wanted one more. Learning that your illness is so debilitating, that having a child would be difficult is heartbreaking. I’ve been there. Some choose not to have a child due to their health, some choose to try for one. Some experience heartbreaking fertility issues. It’s not easy. These aren’t easy decisions to make, easy things to experience. I’ve had 6 laparoscopies for endometriosis. One oophorectomy-right side. 4 cardiac ablations,. I have mobility issues, GP, POTS, OI, endo, IST/SVT, migraines, fibromyalgia, neuropathy, EDS and Nephrotic syndrome.  I’ve spent the last year with my doctors, discussing everything about a pregnancy, the what ifs, plans, good, bad and ugly. I’ve been told brutal truth, to where i cried. I was in therapy to help in the event I made the decision not to have another child. I was in therapy to process my emotions. To process feeling like a failure as both a woman, and future wife.

I’ve wondered, and cried thinking about my son having a disabled mom. There’s times i’m upset that I’m not a soccer mom, but honestly I still feel blessed and happy to have him. I know my limitations, and I do what I can. We have a very open communication with him about my health. He loves our movie days. He actually pushes me to use my walker or wheelchair more. Though I know some wouldn’t agree, but I think my son growing up as he is, is learning to be more compassionate, caring, empathetic and understanding. He has a heart of gold, and is such a helper. As much as I struggle, I wouldn’t trade it for the world.

I know i’ve made comments about feeling fat, or ugly. My family hates when I put myself down. The self deprecating comments, we’ve all said them. We’ve all dealt with all these issues at some point in time. We feel there’s no one to talk to about all this. That no one understands,. You’re wrong. There’s so many just waiting on a community to forge this support! There’s men, and women that struggle. This isn’t just a woman problem. We’ve all struggled. Living with an illness that affects us so much, that has us disabled, or not, we all experience these issues. It’s up to us to build that comity with each other. I see on facebook, people tearing each other down. That’s unacceptable. Be the light! We, as a community should be lifting each other up, not tearing each other down.

Personally, I absolutely refuse to let dysautonomia destroy my goals, hopes and dreams. I won’t let it control me, I won’t let it rob me any more than it has.

 

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From Dad’s Perspective…

I decided to do this post a bit differently! I know i’ve talked about my struggles with my health. I was curious about how my health has been a struggle for those closest to me. I sat down and talked to my dad, and really wanted to understand how he’s felt through all this.

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My dad holding me right after I was born. March 1986

He’s been my caregiver for a few years, prior to my fiancé coming into the scene. My dad is my hero. He’s a tough guy construction worker. He’s smart, funny, and a heart of gold. He’s always believed in me. My dad has been absolutely amazing through all this. He’s missed countless days of work to take me to countless doctors appointments, surgeries, and just to help me through the day. My dad’s unfailing strength has been a blessing. He’s been there to lend me legs, to help me eat, to just  listen as a I cry from it all, or from the pain. He’s seen the absolutely worst of this disease, and the days i’m semi ok.  So, I wanted to know how he’s handled all this, how he’s felt.

Prepare the tissues. Without further ado, He’s what he had to say:

1)      When I first moved down, and my health deteriorated, how did you handle or adjust to that?

I was upset and worried. I thought I could fix it. It was very stressful, I just tried to be supportive and help where I could.

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

Every time I access your port, every time we discuss what your doctors say. Lately I feel overwhelmed when you talk about making drastic changes to your life. I worry that you have a hard time now, adding additional things will just make things worse. That is not fair to anyone.

3)      Have you ever felt helpless? Being my dad and unable to fight off this monster of a disease. 

As a Dad, your job is to fix things. I am supposed to make things better for my children. I have to be strong for you and Mathew, it’s what Dad’s do.

4)      What is the hardest thing you’ve had to face in becoming my caregiver all over again?

The hardest thing for me is to admit I can’t fix this. Sometimes it makes me feel like less of a father.

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?

It depends. I want you to be able to come to me if you really need to. I just have a hard time dealing with the constant negativity. It gets exhausting for me sometimes. You need to know I am there for you if you really need me though. I definitely want to know if there is anything I can do to help make it better.– (Author’s Note: i’m not always negative. I do have my days though.)

6)      What is your biggest frustration in ealing with my health?

Getting you to take care of yourself. Helping keep you positive. Making sure you make good decisions about now and the future.

7)      Being a caregiver to your adult daughter, have you ever resented the role? The sacrifices you’ve had to make to take care of me? 

Of course I have, I am only a man. That doesn’t mean I am angry or sad. We are all dealt a hand to play, How we play it is up to us. I have sacrificed everything in the last 5 years for you and Mathew. My wants and desires were not as important as making sure you two were ok.

8)      If you could give parents new to this any advice, what would it be?

All days are not bad. Enjoy what you can. Take the time to get to really know each other. One does not know how strong one is until they have to be strong.

9)      If you could tell me anything about how you’ve seen my struggle with my body, what would it be??

You need to take care of yourself better. Exercise more, eat better (more consistently) keep what you have for as long as you can. Your son needs you.

10)  Do you know how much I love you, and all you’ve done for me? How your quest strength and your love have given me strength? 

I know you love me. I do not do what I do for the reward of your love. I do what I do because I can’t imagine doing it any other way. I was raised to take responsibility not shirk it. The love of you and Mathew is a bonus not the reason for my actions. The reason for my actions is my love for you and Mathew.

Reading his answers made me cry. His overwhelming love and support is immeasurable to me.  He does what he does, all he’s done for one simple thing, his love for me, for my son. Parents do what they have to because they love us. They guide us, challenge us, and lead us. They are who helps shape us. I am the person I am, because of my dad’s guidance. I’m a stronger person because of his strength and faith in me. My dad is quiet, he doesn’t shower us with affection or pretty words. He’s like a tree. He’s strong, unyielding, and helps us to grow. He’s the roots in my life, in my family.

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My dad and I, when I was 4 years old.

Whether you’re a parent, or a warrior of a chronic illness, share your emotions. Share how this has been for you. Open that line of communication with each other. Caregiver and patient, you’re a team. You rely on each other, for good or bad. Lean on each other, strengthen each other.  Most importantly, love each other.

It’s not always negativity, or sadness, or anger. There’s days of a plateau, days of good and sunshine and energy. Then theres the storm clouds, the thunder and rain of anger and sadness. Don’t lose yourself in the storm clouds. Don’t shut yourself off. Lean on each other. Remember, the sun always shines after the storm.

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With love,

A