I am a Survivor

October is Domestic Violence Awareness Month. Domestic Violence isn’t just black eyes, or bruises. It is also emotional abuse, financial control, misusing technology, threatening words or actions, intimidation, pet abuse, and sexual coercion.

Now, you may wonder why i’m writing about this. Well, perhaps it’s time I share my story, as a domestic abuse survivor.

Years ago I found myself in a relationship with what I thought was a great guy. He stepped up when my son’s father left. We were friends for a while, and eventually our relationship became more. Things were good, then the drinking started. He became mean, really mean. Made comments about my weight, my body, just essentially tearing me down.

“You’re used goods.”

“Lose weight and maybe we’ll get married.”

“No one would want you.”

Those were just a few of what I heard on a daily basis. He once called me a trailer trash whore when I was wearing a dress, knee length for a work christmas party. He’d sober up, and apologize the next day. Eventually we decided to move to another state. Promises of change, and better things to come. I was cautious but excited. So we moved. In our new town, I had no one. All my family was where we’d just moved from. It was a huge adjustment. Little did I know what was to come.

In 2010, we faced economic hardships. Somehow it was my fault he had no money. In time our finances improved. In 2011, I worked full time. Made decent money, however he made nearly 3 times what I did a month. Yet he wanted to split everything 50/50. His drinking didn’t let up. Every Sunday and Monday for football, he’d drink a 12-18 pack by himself. That’s absolutely absurd. He refused to give it up. Absolutely refused.

The comments got worse after we moved. They started happening even when he was sober. I was fat, stupid, useless, a b***h, horrible things. He loved to remind me how I’d never find anyone else. He constantly accused me of cheating. Yet he kept in close contact with an ex. The drinking continued. He was still financially crippling me. Then, then things got worse. If I needed help financially, he’d try to control me through sex. He used sex as a weapon, as a tool to control me. Simply because he felt he could.

As things worsened, I knew I needed out. I called my dad, and we made a plan. A plan for me to get out. He took over my car payments, which allowed me to hide that money every month. I walked on eggshells. I was scared for the moment it would turn physical, for it came close a few times. Though, you know what? The emotional scars are far worse. It took me months to save to get out. My boss gave me a huge christmas bonus. With that I was finally able to get out. Living together when the relationship had ended months before was weird. However, on December 31, 2011, I left while he was at work. Friends helped me to get my things out before he got home. He showed up just as I was leaving. He looked at me with shock. I simply told him I was done, that I deserved to be treated better. I walked out. I got out. But the scars, the damage from nearly 3 years of being told I was nothing, that I was useless, that no one would ever love me, that I was fat. Those scars have stayed with me for 9 years. Those scars aren’t so easy to heal.

I got out! Great right? It was, for years! Then, in 2017, I started seeing someone. A few people close to him warned me. I’d seen some concerning things after he proposed, but I ignored them. I ignored the red flags. I wish I hadn’t. I noticed he had a temper. A really bad temper. Again, little did I know the hell that would become my life. I saw the signs. I saw the issues with mental health. I just didn’t know what to do, or how to get out.

He was really good at gaslighting me. Really good. Really good at playing victim. He let others have such an affect on his life, it was disturbing. If someone said something mean or against something he said on facebook, it completely ruined his day. Losing in a video game would set off fits of rage. Rage. Rage like i’d never seen before. How bad was the rage?

Well, here’s a list:

  • Snapped a tablet in half
  • snapped a laptop in half
  • put a mouse through his monitor… twice
  • Destroyed his kitchen, broke dishes.
  • Ripped a door clean off a travel trailer
  • Would send death threats and hate messages to people on PS4, and Facebook

He would gaslight, and then turn the entire conversation around to make me the villain. He’d accuse me of cheating. He’d be angry and cry if I didn’t answer my phone when he called. He made suicidal threats, suicidal ideation. Anytime he’d get angry, he’d say, “no one cares, so i’m going to kill myself.” It was an all the time statement. I tried to convince him to get help. I tried to help. I tried, but walking on eggshells gets old. Being cussed at, screamed at, and pushed in a rage became too much.

He came at me physically twice. That was it for me. Absolutely never acceptable.How do you live like that? How can you marry someone like that?? His dad was abusive towards his mother. He swore he’d never hit me, but honestly, it was a matter of time, that was evident. He lived on the west coast, while I lived on the east. It made distancing myself easy. Unfortunately I was not prepared for the hell that was about to be unleashed upon me or my family.

My March 2018, I was done. I didn’t want to marry, I didn’t want to be together. I expressed my concerns, and told him he needed mental health help. He said ok, but never made any effort. In August 2018, something happened as a result of something HE did. He called me, cussing me out, blaming me, calling me an idiot, useless, all sorts of names, namely C**t. That was his favorite thing to call me. Again, instead of taking responsibility, he played victim. I was done. I wanted out, so I told him I was done. I was done with the suicide ideation, anger, with the temper issues, with having to walk on eggshells so I didn’t set him off. I was tired of living in fear. I’d never in my life been afraid of a man, but him, I feared him. I feared him because I knew his temper and rage, I knew what he was capable of. I still underestimated him and the hell that would arise.

I was done with the suicide ideation, and threats. Now this may sound heartless. I lost a close friend to suicide in August 2018. So his constant threats, and comments were draining. They were too much. In September 2018, I officially ended things. I couldn’t live like that anymore. The walking on eggshells every day, it was just too much.

To say he didn’t take it well is an understatement. It set off a chain of events none of which I was prepared for. Upon ending things, all the feelings of love from him became hatred. He hated me, and he was vocal about it. I was called horrible vile names. “C**t, “F*****g W***r, B***h, and so on. Every day. He threatened to kill me, threatened my family members. He created fake accounts on various social media to contact me threatening me. He was extremely vocal about his hatred of me on facebook, yet facebook not once took down his page. It was infuriating. I had to make screenshots of everything he sent me. It wasn’t easy, but I had to. Eventually we had to call the police both in my town and his. He literally laughed in the officer’s face. It became so much worse.

Threat after threat. Fake profiles to harass me, using his mom’s phone, and facebook to harass me. Using any means necessary. Through all this one thing remained. I escaped this. I escaped the escalation. I escaped the fists, the black eyes, the bruises. I got out. He did this for over a year. A year.. A FREAKING YEAR he did this. I had to hide and lock all social media, change my number, hide my address on local pages. I had to go into hiding so he couldn’t find me to threaten me even more. It’s been over a year since he last messaged me. A year of peace. A year of working on myself, repairing the scars from the abuse. Not just from him, but from before him. The emotional scars are the worst. Healing from that level of abuse is not easy. Learning my self worth, and confidence has been a slow progress. Learning to love myself is a slow slow progress. Learning to know and remember that I AM WORTHY is the hardest. Counseling has helped.

I don’t talk about this much. It’s hard. It’s hard to acknowledge that I was in not one, but two abusive relationships. It’s hard to come to terms with it, but I am. I got out. I got out alive. Before it escalated to physical abuse. I’m one of the lucky ones in that sense, however the emotional scars are still healing. The pain is still there. Sometimes I get scared he’ll find me. Sometimes I feel stupid for even thinking that, but it’s a real thought as a survivor. I’m a survivor of mental/emotional abuse, intimidation, physical abuse, and more. I’m a survivor of domestic violence. This is my story. This is my strength. This is me. This is me, a survivor, rising from the ashes.

October is…dysautonomia

Dysautonomia awareness month! What does this mean to me? It means i try to raise awareness for dysautonomia. Educate, and share my journey.

In 2013, I was diagnosed with dysautonomia. Now, there’s 15 different forms. I have THREE! Three different forms. 8 years ago it was so bad I couldn’t stand up without fainting. It was terrifying. I had to give my dreams of getting a Masters in Psychology. I was angry, scared, unsure of what the future was. All while being a mom to my son, a single mom at that. I’m immensely grateful for the support and help of my family during that time.

I didn’t drive for over 6 months. In 2012, I had to have a cardiac ablation due to a rare form of SVT. This led to my needing a pacemaker. My electrophysiologist decided on the Biotronik Evia DR-T. This pacemkaer is unique in that it has a special programming feature specifically for Vasovagal syncope, which i had. This has been an absolute godsend for me. My fainting has dramatically reduced, actually i haven’t fully fainted in years.

Adjusting to life with a pacemaker was overwhelming. Learning my do’s and don’ts. Come to find out, i’m hypersenstive to certain things and could actually feel when my ventricle lead was working. Unfortunately this meant that lead couldn’t be on, or it had to be set very very low. I’ve learned in recent years, this pacemaker has become key for alot of dysautonomia patients to regain some quality of life.

Post op I developed complications. I couldn’t walk. I nearly lost complete use of my legs. I had to use a walker to get around, even in my house. Wheelchair rentals when going somewhere. I started physical therapy but no one had any clue what was going on. It seemed to come in waves. I’d be fine for a few weeks, then “relapse” worse than the last time. Through a lot of hard work, and physical therapy my gait has improved. I still tire easily and now use a cane. Though, we are awaiting a wheelchair for bad days and long walking days.

I dealt with temperature regulation issues, GI issues, heart rate issues, headaches, fatigue. Oh man was the fatigue horrible. Doctor after doctor. Treatment trial after trial. It was overwhelming, seemed never ending. Eventually i’d had enough. The medication side effects were worse than the disease symptoms. After much discussion with my medical team, we decided to stop the medications, and trial IV fluids. My EP in Virginia had success with other patients doing this, so we gave it a try. Well what do you know, it was like a battery charger for me! I wasn’t as fatigued, heart rate wasn’t as erratic and my blood pressure stayed stable. This was amazing!!! So, it was decided to place a central line so i’d have constant access for fluids.

So fluids was my magic elixir! A picc line was decided. We placed it in spring 2014. It was honestly a horrible experience. in August 2014, I became very ill. Incredibly ill. Vomiting for hours, fever that reached 104.9. I was scared, and out of it. I don’t recall much of that particular night. My dad rushed me to the hospital. My primary doctor met me there. Labs taken, cultures done.. Picc line removed. I remember waking up the next morning. Apparently my team did not expect me to make it through the night. How terrifying is that to hear? It’s really hard. It turned out I had a septic infection. Dangerous and potentially life threatening. I’m immensely lucky we caught it early on. What caused this? Honestly, I feel it was the lack of proper protocol by home health. I am now a stickler for protocol. If you do’t know it, or can’t follow it, I will NOT allow you to touch my central line. This is non negotiable to me.

So here we are, it’s 2020. How am I? I have good days, and bad days. Every day I strive to make it a good day. To make memories with my son. I strive to live. By learning my triggers, by learning my limitations I was able to adapt my life and still live! Yes you read that right. I adapted to my limitations and still live. I choose to not allow dysautonomia to take my goals, hopes and dreams from me. I don’t want you to do that either. Yes dysautonomia is life changing, but it doesn’t have to be life ending. With treatment catered to you, learning your safe activities, you can still live. I want you to live. I want you to believe. I believe in you.

Stay true to who you are. Stay true to your goals, hopes and dreams. Please never give up.

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

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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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

Life, Insecurities and Strength

Hello my beautiful and amazing lovelies!!! I know i’ve been missing in action, but now i’m focusing more on writing, with the support of my family and friends!!!

 

OK!! Lets get down to it! So, i’m not sure any of you know, last year I signed on to be a Community Leader with Dysautonomia Support Network . This was so important to me.  I want to connect other patients, other caregivers, I want to work together and get doctors involved in learning more about dysautonomia. This is a passion of mine. This I do, for all of us, for you, your wife, sister, mother, friend.. Anyone that suffers any chronic illness, we need to build that support system together! I’m working on projects, still learning the ins and outs of things. It’s been an amazing time learning and volunteering with so many amazing people. 🙂

 

Now I know i’ve touched on it in a few older posts. I walk with a limp, with an unsteady gait. I usually use a walker. Well, my rheumatologist is sending me for Aquatic Physical Therapy. I had my first consultation this past Tuesday. It was interesting, long and tiring. I have motor control and planning issues. My joint instability also lends to issues. I have major balance issues. My goal is to walk down the aisle at some point, and dance my first dance and dance with my Dad! She recommended a wheelchair for distances and anything that involves a lot of walking. This, unfortunately I know was coming. We’re now at a safety thing, a wheelchair will give me a bit more freedom, and allow me to do things with my son/family. When I got home, I was upset, I cried, and just didn’t want to acknowledge she was right about the wheelchair.Two amazing friends, whom I met through DSN, also were amazing at reassuring me of things, and how it does’t have to affect my life as a mom or wife negatively unless I let it. Between them, and my family, they really eased my mind. I know it’s not an easy thing to accept, but we need to acknowledge our body’s limitations, we need to listen to our body, not push it till we fall, or are utterly exhausted. We need to take care of ourselves too!

 

This brings me to my next topic.. Self Care! What do we do for ourselves? To relax, refresh our mind, and body? Self care is so so important. The below quote is all too true. We must take care of ourselves! 🙂 What’s your favorite thing to do?? Leave a comment, lets start a discussion (I may create a facebook page for my blog), and maybe give each other ideas!

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Alrighty, someone asked me how can I be disabled, sick, and date. I talked to my counselor, and she helped me to see myself for who I am. I’m strong, i’m independent, i’m compassionate, passionate, loving and caring. I’m a silly in the car singer, dancer, and goofy person, I love meme, and jokes. Why WOULDN’T anyone want me?? My physical limitations don’t have an impact on WHO I am. They DON’T define me. I think that’s what we in the chronically illness community deal with. It’s become a part of us, our life, and we’re so quick to just dismiss the chances of life, or really living life. I think we need to always remember, we’re people. We’re not our illness. We’re not our dysautonomia. We’re not our Ehlers Danlos, Our Lyme, or anything else. We’re ourselves. We are who we are. We’re people with dreams and goals. You deserve all the love and happiness. Don’t let your illness define you.

 

I can’t stress this enough, always be true to you. Always be a voice, always know you’re beautiful. you’re strong, you’re a warrior. Most importantly You’re not alone, there’s a community standing behind you. There’s always someone there to listen, just reach out. If you’re new to a diagnosis, reach out to a group. If you’re new to being a caregiver, reach out. I will be here to listen. For now my beauties, stay who you are. Continue being the warriors you are, be proud of who you are.

 

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-Much love to you all.

A.