hope

Six months after the Heartastrophe

Six months ago I woke up in the Cardiac ICU having no knowledge of what happened. No knowledge of how close to death I was. All I knew was the excruciating and agonizing pain I was in. The screaming, the struggle to breathe. That’s all I knew at the moment. My mom took my hand in hers and explained the surgery didn’t go to plan. That I suffered a catastrophic injury that nearly cost me my life.

Since then, I’ve faced so many complications. So much lingering pain. Still lingering issues with my lungs that require 3 inhalers a day. Complications that have caused my hernia repair to fail, and thus my parastomal hernia to reoccur. Complications of a wound dehiscence. An incision infection that was initially dismissed by the Nurse Practitioner at the surgeon’s office. “It’s just a surface infection”, is what i was told. Complications and actions that have led to trauma. There’s days the pain around my incision is a 9, there’s days it’s a 4. It’s always a dull ache though.

I can barely walk these days. I can barely last 10 minutes outside in the heat and humidity due to my lungs. Bibasilar Atelectasis..still at 6 months post op. The fatigue is awful. Simple tasks leave me utterly exhausted. Is this my new normal? What quality of life do I have?

I had to go to a local wound care clinic to get help for my incision to close back up. Daily dressing changes with packing. Weekly Wound Care appointments for debridement. Do you know how that feels? It’s not pleasant. Having to use special packing and dressings to prompt healing.

I’ve also received no accountability from the cardiology office. As it turns out, someone had shut off the home monitoring for my pacemaker March 2023. Had it been on, and monitoring my device, we could have caught the malfunctioning of the device when it began in August 2023. Instead it wasn’t caught until January 23, 2024. However, it was not known the leads had frayed, and the risk was tremendous.

See, Biotronik has a monitoring alert system for their devices. If the home monitoring isn’t connected, the Doctor’s office is notified by Biotronik. So to ask, who ignored the alerts? How was it missed that my home monitoring was not connected, thus not transmitting data from my device nightly. I’ve asked this many times. I’ve used my voice not only as a patient, but an advocate to get answers. I’ve received none.

I’ve read the operative report so many times. I’ve learned what I could about what happened. Maybe that’s the PTSD. Though there’s still so much I don’t know. One big question, how was i stable when pulled from Bypass in the OR, but on a ventilator less than an hour later? WHAT HAPPENED? I’ve never gotten an answer regarding that. There’s only one note in my paperwork about it. Absolutely nothing else.

I’ve tried to transfer care. I’ve tried to find a cardiac team. Unfortunately I’m in a situation where I need a specialized team. This requires travel. Which is what I’ll do. I want a better quality of life.

Six months of wanting answers. Six months of trying to piece together what happened. Six months of trying to process and heal the trauma. I think that may be the hardest part. The flashbacks, the memories of being in such agonizing pain not knowing what is going on. The anger, fear, anxiety, sadness at times is so overwhelming.

I get frustrated. I’ve built my name in advocacy. I’ve built my own voice, and have advocated for myself and my community. Yet in this I feel voiceless. I’m not though. Maybe they wish I were, but I truly feel there needs to be accountability for this situation. Accountability for the abysmal post op care, the astronomical medical costs I’ve incurred due to the complications. The medical costs have affected me tremendously. Complications that may be permanent.

Six months of wondering how this happened. We need transparency in healthcare. We need accountability. This is a situation that possibly could have been prevented if the malfunctioning lead was caught sooner. I refuse to just let this go. I refuse to be voiceless any longer.

It was a wild 2023!

Hello my lovelies! I know it’s been a while since I’ve last written. Last year I had so much going on and I had to take time for self care, and family.

In March 2023 I relocated to a better school district for my son. It was a huge adjustment. New city, new school. Not knowing anyone over here. I did however find a beautiful place by the water that played live music on the weekends. That quickly became my peaceful spot. I mean water, live music and yummy food trucks! one local singer quickly became my favorite. He was very reminiscent of Chris Stapleton.

You see, in June 2023 I went to visit my dad for Father’s Day. That weekend I received heartbreaking news. He had cancer. That he had emergency surgery in January to remove a large tumor on his spine that was causing severe issues. Learning this was such a huge blow to our family. He started radiation in August, and is recovering the best he can. Our family has rallied around him and his wife with our love and support.

My son started high school in August. We relocated last year to a better school district, as the high school had higher level academic classes, which he needed. It was a bittersweet moment his first day of school. I remember when he was just a baby, and now here he is in high school!! Where did the time go?! As nervous as I was, I was excited to see how he grew as a person and how he adjusted to a new city and new school. He has THRIVED! Let me tell you. This kiddo is in all honors classes, and has maintained a 4.0 through the year. He has studied, done amazingly well on his exams, and even made it to states with his robotics team! That’s two years in a row for him!!! I am so so immensely proud of him. Watching him grow and adapt has made this momma so happy.

While all this was happening I was working on self care and my mental health. I was also preparing for a major abdominal surgery in December. December 21, 2023, I had a complete abdominal reconstruction. It was rough. I was immensely blessed my surgical team was able to do 8 small incisions instead of a large midline incision. What was supposed to be a 6 hour surgery turned into just under 9 hours. My surgeon said it was a very difficult surgery every step of the way. The amount of adhesions and scar tissue was causing a lot of issues. He also said the hernia around my ostomy could have reached an urgent situation soon. The good news is it was a successful surgery. He was able to repair the diastases recti, two hernia and several other issues. A full abdominal repair.

While recovering from this surgery was incredibly difficult, I was lucky to have help from my mom and son. I’m so incredibly lucky my friends and family were so amazing. Luckily I was home for Christmas! Celebrating Christmas in our home, our first Christmas in our new home was so important to me. I’m so glad I was able to! Here’s some photos!

We rang in the new year at home. Relaxing and comfortable! While a lot happened in 2023, some good, some bad, we made it through. I’m so grateful for all that was accomplished. We were prepared for 2024… or at least we thought we were.

Surgery….

On July 8th I had an open parastomal hernia repair, and colostomy revision. It required two surgeons for the surgery; my colorectal surgeon, (whom is amazing) and the hernia repair specialist. Both have extensive experience with EDS patients. We went over everything. The plan, the options, and knew it wouldn’t be an easy surgery, or recovery. We even met with the pain/anesthesia team to manage my post op pain with a povicaine pump. We were told the surgery would be 2 hours. That the incision would be on my right side, maybe 3-4″. However, That’s not what happened. None of it went to plan.

I remember waking up in recovery screaming from the pain. Just screaming. The pain was absolutely horrendous. The pain team (APS) came in to reprogram and fix the povicaine pain pumps. When I was finally awake enough, I learned my surgery was over 4 hours long. That hardly anything went to plan.

My colorectal surgeon told my mom there were so many adhesions, so much scar tissue. That at one point they had moved my entire abdominal cavity and organs. No wonder the pain was so horrendous. We prepared for a 2 hours surgery. What we got was a 4 hour surgery, with a 7″ incision down the middle of my abdomen, with a 6″ piece of mesh repairing the hernia. I was not prepared for that. It was so overwhelming when I saw it. I cried. I could fell myself spiraling. Another scar, another story, another battle victory. Is that what we call this surgery though? Yes, I will call this surgery a victory. Each surgery is a victory, a small win.

As discussed, I was admitted, and would be in patient for a few days. It was honestly a horrible experience. I’m on TPN, and a high dose of antihistamines to manage my chronic hives, and sensitivity to dressings. I also have a form of CKD. So fluids are important. To make matters more complicated, I went into surgery with low hemoglobin and hematocrit. I was anemic. Definitely not the best way to head into a major surgery. We managed though. What WASN’T managed though, was my TPN. The hospital pharmacist absolutely refused to do my TPN. My surgical team fought and fought, but he adamantly refused to make it for me.

How was this even acceptable? What’s even worse is the hospital dietician knows the pharmacist is like that. The nurses new, hell even my TPN infusion pharmacy warned me he’s difficult. What blows my mind is how he thinks he has the authority, and final say to fill TPN orders. Does he do this to every TPN patient? Who gave him this power? And why does NO ONE stand up to him or hold him accountable?? The dietician tried to put me on J-tube feeds…..That I don’t even have a tube for.

I was in the hospital for barely 48 hours before I wanted to come home. My antihistamines weren’t given to me correctly, the incorrect dressing was used. This resulted in blisters all over my abdomen where the dressings were holding there pain catheters in. The incorrect antihistamine dose resulted in my being unable to be accessed for my port in order to run my TPN, for 2 weeks. This should not have happened? I shouldn’t have been without my meds, I shouldn’t have had to suffer because instructions and orders weren’t followed.

My surgery was Friday, July 8th. By Sunday I was done, and wanted to come home. I didn’t feel safe. I wasn’t given the correct dose of my meds, not even my gabapentin. I wasn’t even given fluids the entire time I was in the hospital. The surgical team, after extensive discussion, decided it was best, and safest for me to come home Sunday, July 10th. Barely 48 hours after a major surgery.

How did we get to a point where coming home is safer than the hospital? What happened to patient care? What happened to following physician orders? Why does a pharmacists get to refuse TPN orders? Why weren’t the orders followed on the floor regarding iv fluids?

This surgery, and hospital stay has lingered on my mind. I’m upset at how so many things were ignored or just dismissed. What if I were a true TPN dependent patient? This has all left me questioning if patient safety and care are still a priority, because lately it doesn’t feel like that. We need better, not just us patients, but providers, especially nurses. None of this should have been ignored. No pharmacist should have that kind of power to refuse orders.

What I do know, is I won’t let this slide. Conversations need to be had. He needs to be held accountable for this behavior. It’s harmful. It’s dangerous.

I’m slowly recovering. It’s been a very difficult recovery. Very slow. I’m doing my best to heal, and ensure the repair holds. In time, I’ll feel better. For now though, the pain hits randomly. For now, I let go of the anger at how bad my in patient was stay. For now, I’m focusing on healing.

An Open Letter to Doctors

This was also published by The Mighty.

Dear Doctors:

We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional added to us. What we don’t need is for you to medically gaslight us. That’s not acceptable. Not in any way. We KNOW that as a rare disease patient, or a chronically ill patient we can be complex. We already know this. We don’t need reminding. Many of us struggle with being heard. Unfortunately too many of us have been dismissed, belittled, ignored. Too many of us have been gaslighted by those that are supposed to help.

Medical gaslighting is term used to describe doctors or medical practitioners who blame a patient’s illness or symptoms on psychological factors, or deny a patient’s illness entirely, for example wrongly telling patients that they are not sick

This is prevalent in the chronic illness/rare disease community. So many have experienced. Oddly many have experienced this with neurology. Neurology seems to be the one specialty many of us experience this with. However, this does not just happen with neurology, but many specialists. So many tell us it’s in our heads, go to counseling, or we’re just looking for something to be wrong. We’re easily dismissed. This leaves us frustrated, confused and angry. Some patients have developed PTSD from the traumatizing experienced within the healthcare system. We experience negativity, dismissiveness and unacceptable behavior from doctors to the point we have developed PTSD.. That is extremely concerning. This is causing us to mistrust doctors, some even avoid them for years for fear of this reoccurring.

What prompted this “letter” you may ask? Well, I was referred to a neuromuscular doctor, I saw him about 2 months ago. He was great at the first appt. Said there were signs of ataxia and MS. I saw him again August 9th. He did a complete 180. Appt was less 10 mins, closer to 5. He said no MS, which is fine. I asked if my EDS diagnosis plus my collagen gene mutation could cause the muscle fatigue and such. He said maybe. Then…then he really upset me. He said “let’s not look for anything else to be wrong ok?” Not the worst to say but still awful. Obviously I don’t want extra diagnoses. However his next comment and note in my chart really solidified why I struggle with neurology as a whole. He stated at some point if surgical intervention is needed, a psych evaluation should be done beforehand. I have never asked for a surgery or test. I have never been through a surgery that was not absolutely necessary.

What?! Why? I’m genuinely baffled at why this is always what doctors fall back to. It’s insulting and so unacceptable. I posted my experience in several support groups. It was overwhelming by how many have similar experiences with not just neurology, but many specialties. Many specialties do this. As a Dysautonomia patient, neurology is one of the specialists to follow that diagnosis. Yet, many don’t want to, or they’re dismissive. Our symptoms are real. Our pain is real. Our concerns are real. It’s not all in our heads. It’s not just mental health or depression. Yes, we can develop depression and anxiety. However, let’s look at it subjectively. We’re chronically ill. We go to doctors to help us. We’re turned away, dismissed, ignored, told to go to therapy. How could we not develop anxiety, or depression? Perhaps BOTH are reactive to what we’ve experienced? Perhaps both are reactive to living with a life altering diagnosis?

Yes, I’ll say there is some depression. Yes there is some anxiety. However it is most often NOT the cause of our symptoms. Some already attend counseling in practice of mental health and self care. Not everyone with chronic illness is depressed. Not everyone with chronic illness has anxiety. You CAN be chronically ill and have STABLE mental health. It is possible. I am a strong advocate of counseling, and self care. A strong advocate of discussing mental health within the community.

We want help. We want to be listened to. Most importantly, we want to be HEARD. We want to be treated with respect, kindness and compassion. We want to work with out doctor as a team. We want to trust out doctors. We want to work together. We want open communication. If you don’t know how to help us, say that respectfully. Set your pride aside and think of the patient, of us.

Please hear this plea. It’s not just a plea from me. It’s a plea from the rare disease and chronic illness community.

Let’s work together to create change. Let’s work together to refine and improve our patient-doctor relationship. I have hope we can do this, together.

Sincerely,

All of us.

Wrapping up 2020

We made is through 2020!! I feel like that is such an accomplishment! We’ve faced things we’ve never before experienced. We made it through. We made it to 2021.

My 2020 was riddled with appointments, treatment decisions, ensuring my nutrition was stable, and virtual school for my son. Which was an absolute disaster. So much happened, so much to work through, process and cope with. My son struggled immensely with the lockdown, he struggled with doing school virtually, his OT appointments stopped. It was hard. We always say how hard it’s been for us adults, but it’s been hard, if not harder for our kids. He’s back in school and thriving!

My 2020 rounded out with back to back procedures and prepping for a major surgery in January. Back to back port replacement surgeries.

2020 was the year that was trying to us all. Especially those in the chronic illness community. We struggled for care, we struggled with mental health. Some had procedures rescheduled, some had emergency surgery. Despite our trials, despite everything that tried to knock us down, we’re still here. We’re still standing. Recognize the accomplishment. Recognize how far you’ve come. Be proud of you, as i’m proud of you.

2020 was difficult. It tried to break us, it tried to take so much from us. Yet, we’re here. Standing. You are amazing, strong and brave.

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.

End of the Year… Reflection

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.

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…

Now I choose to live…

**Trigger warning. **

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

Down the Rabbit Hole..

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.

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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