LivingWithDys

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.

Heart-astrophe

On February 9th I was scheduled for a pacemaker replacement surgery at UF Health Heart & Vascular Institute. An overnight stay I was told. I’d be home Saturday. Oh how I wish that’s how it went.

Prior we had discussions over which pacemaker to be put in. It was decided to use a BIOTRONIK Edora. I was fine with that as I needed the CLS feature. I’d had a Biotronik Evia for 14 years. I had faith in Biotronik.

I arrived at the hospital. We went over everything. I gave my mom a hug and I was wheeled back to the OR. Ready for my new pacemaker. I woke up February 11, 2024 in Cardiac ICU in agonizing pain, confused and scared. I had no idea what happened. No idea why I was in ICU, no idea where the previous few days went. I have flashes of memories from those days, but it’s foggy.

My mom was there, at my bedside. Apparently she hadn’t left for days. I remember looking at her, confused about where I was. She took my hand and explained there was a complication and I was in the Cardiac ICU. It turns out it wasn’t a small complication. While trying to remove my Atrial Lead, it fragmented and frayed. I had a sudden drop in BP, and my cardiothoracic surgeon made the decision to perform an emergency sternotomy. Upon opening my chest It was discovered my RA/SVC had a complete tear. I was put on CPB to repair the tea, which they did successfully. I was removed from bypass. However I had to stay on the vent, as my lungs had to be deflated to access my heart and repair it.

To say I was confused and scared is an understatement. It took me days to fully comprehend what happened. The cardiologist and cardiovascular surgeon explained it to me. My mom explained it. The ARNP explained it. Yet I was struggling to comprehend and process it. My priority was my son. My son’s well being, HIS mental health with this. Also my mom’s. As a parent I can’t imagine the fear she went through. The sight of me laying in the hospital bed hooked to machines to help me breathe. She snapped a picture of what she saw when she first walked into my room in the ICU. She wouldn’t show it to me until weeks later. It was heartbreaking to see. Each day in the hospital I was told my restrictions. I can’t use my arms much, I have to protect my lungs and chest. I can’t drive for 4-6 weeks.

Heading Home, Finally

Finally I was discharged after 8 long days in the hospital. I’ve spent the last 14 weeks healing, processing and learning what happened and what’s next. It turns out they did not put the new pacemaker in. I also still have a fragment left in my ventricle chamber. I have a lot of questions for my team, though I’ve honestly lost trust and faith.

My dad spent the first 3 days with me when I got home. He helped with meals, making sure I ate, took my meds. And helped with Mathew. I’m so grateful he came up to help, and give my mom that small break. Once he went home my mom then traveled back and forth from where I live and where she lives t help me shower, do laundry and grocery shopping. Several nights a week, all while working 9 hours during the day. I’m so immensely grateful to both of my parents.

You see the post op care from the cardio team was awful. They dismissed an infection, dismissed breathing issues. Dismissing my concerns. The surgeon actually laughed at me when I asked when the remaining fragment would be removed. His reply, “What so I can knick your heart again?”. That’s not funny. To learn I CODED on the table. To learn, I almost didn’t survive. The nonchalance has been too much for me.

Through all the recovery I had my birthday in March. Turning 38 was a big celebration this year. I also celebrated my son’s 15th birthday in April. Small celebrations through this hellish recovery.

Finding out More Information

We found out someone at the cardiologist’s office shut off the home monitoring in March 2023. Biotronik sends alerts if data isn’t transmitting. This was ignored. Thus NO DATA was transmitted from March 2023 forward. This means when my atrial lead started malfunctioning, it wasn’t caught. This means when my low battery alert should have happened, it didn’t. Someone didn’t uphold their job. They didn’t maintain cardiac care. This is a scary thing. This has led me to have trust issues with that office. Honestly, rightfully so I believe.

I’m still dealing with fluid in my lungs. Still dealing with overwhelming fatigue. PVCs, low heart rates, palpitations. My portacath was also broken during the surgery and had to be removed.

A recent 48 hour Holter monitor showed 86 bradycardia episodes in 48 hours. Thousands of SvT episodes, PVCs.

A recent TTE Echo showed an enlarged left ventricle, left systolic function of 55%, left atrial enlargement, IVC Dilated, RA Pressure high, Regurgitation of the following: Mitral, Pulmonic, Tricuspid. -None of these findings were on my 2019 Echo. Were some of these the result of the surgery in February? Are these concerns? I’m still waiting on answers.

What’s Next?

I’ve decided to seek consultations from previous electrophysiologists that I trust. Consults with top hospitals and cardiothoracic teams in the country. Thus I can make a fully informed decision on what comes next.

Many know I’m a fierce patient advocate. I am vocal on healthcare change, holding physicians accountable for things. This time i’m conflicted. I praise them for recognizing there was a complication and reacting so quickly that they saved my life. My cardiac surgical team did amazing work. I’m told the repair time was amazing. My surgeon caught the sign something was wrong and immediately made hard decisions. I truly feel he is why I’m still here. Though the post op, after discharge care has been horrible. I can’t tell if that’s due to the surgeon or his office continuing to schedule me with the ARNP.

We sometimes focus so much on what physicians do wrong, we don’t acknowledge the good they do. We should. We should show the good and the bad. I’m grateful for his quick reaction. I’m thankful for his skill in cardiothoracics. I’m grateful for such an amazing surgical team. What I’m not grateful for is unanswered questions, anxiety and trauma from this.

My closest friends have been such blessings through this. Being there for me via text, calls. Understanding my mental health and just listening when I was struggling to comprehend this all. Aly & Chelsea, from the bottom of my heart I’m so grateful to you, and love you both so much.

I am still emotionally processing having open heart surgery. I’m processing what happened. This has left me emotionally drained. This has left me with anxiety, and trauma. This has been such a traumatic experience. This has also impacted me tremendously financially. Having to travel out of state for care is not easy financially. However I must get cardiac care. I have started a shop to help with costs, also any donations would be so immensely appreciated.

I’m grateful for my team. For their quick actions saved me. Praising my surgical team. Thankful for my nurses and my aides that I had in-patient. We often don’t acknowledge the good. Maybe it’s time we do. We can celebrate the good, while also advocating for transparency and accountability.

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.

I am enough….so are you.

Hello my lovelies. I know I haven’t been on here writing in a while. Life has been happening.

So what prompted this post? Well honestly so many things, but mainly my emotions. I’ve been battling a rollercoaster of anxiety for the last few months. Battling whether to walk away from a situation or to stay. Battling my own inner demons. Well it’s all come to a head. Tonight, tonight it’s getting the best of me. Tonight my fears are roaring loudly, my insecurities are whispering I’m not enough. My anxiety in the background just murmuring agreement. Have you ever had that hard sob in the shower? That cathartic release of everything?

I have been very honest about my struggle with my self esteem, my confidence. It’s been up and down. Some days I’m so confident, others it’s a struggle to find something I like when I look in the mirror. Tonight I’m angry, hurt, sad, and feeling so damn broken. I feel so many things. So many emotions. It’s hard to process them all. It’s hard to see light in the darkness. I overthink. I over apologize. I overanalyze.

Tonight the anger I thought had long been extinguished is simmering, the betrayal, the hurt and pain. What I’m angry about is how I held on for so long, how I begged him to choose me. I shouldn’t have had to do that. I shouldn’t have to beg anyone to be in my life. I shouldn’t have to fight for a place in your life. I learned, through the last year, that I am WORTHY of love. My struggle is believing I’m enough. It’s odd right? I find my worth, I find myself, but still struggle to feel enough? How?

Well it’s from YEARS of not thinking I’m enough. From an ex that told me time and time again I wasn’t pretty enough, skinny enough. From people saying that I’m too loud, too opinionated, too ambitious, too sensitive. I’ve always been told I’m “too much”. That guys don’t like women like me. I’ve come to accept that, but why should I?? Fear. Fear of being hurt again. Fear of letting someone in again, and getting hurt.

From years of having to apologize for my feelings, for saying the wrong thing, or saying too much or hell even for being too much; I’ve become an over thinker, an overly apologetic person. I apologize for things I don’t need to. I apologize for saying how I feel. My feelings have been dismissed by so many people in my life, that I’m not comfortable sharing them. I have difficulty verbally communicating them, but have me write them? I can do that. I’m learning, at 37, that I don’t need to apologize for who I am. For what I say, for me. I am who I am. I’m learning to find my joy. To find me. To be happy with myself, more importantly, to love myself. I’ve accepted my scars. I’ve accepted the ostomy. I’ve come to terms with my infusions and diagnoses. I still struggle to feel ENOUGH for someone. It’s a contradiction. I’ve accepted my flaws, yet I still struggle to feel enough because of them. To not feel as though I’m a burden or an inconvenience to someone. I still worry I’m an inconvenience, that I’m bothering someone with my texts. Again, the overthinking comes into play, and sometimes I can’t stop the spiral in time.

Pain changes people. Heartbreak changes us. For some it makes us more cautious. For some it’s easier to keep people at arms length, to not let them in. It’s hard to let someone in when you’ve been so badly hurt. We all heal differently. Some are able to lets others in easily, some it’s a struggle. I’ve been so afraid to let someone in. To let someone in and give them the power to hurt me. To break my heart. I have to choose is that how I want to live? a life without love? Without a partner?

How can I feel so many conflicting things all at once? It’s simple, I’m human. I’m on this journey of healing. I’m on this journey of loving myself as I am. On this journey to grow into the person I want to be. I’ll get there, our journey is not a straight line. Healing Is not a straight line. We have hills and valleys. We have good days, and we have bad. We have to choose and work through it. We have to find our worth. Find we’re deserving of joy, of love, of happiness. We are. I am, and so are you.

Tonight the emotions are overwhelming me. Tomorrow though, tomorrow they may barely be noticeable. Tonight I’m releasing it all. I’m writing it all out. Letting the overwhelming feeling go and choosing joy.

I recently saw a quote: “You’re not afraid of new love, you’re afraid of old pain.” I don’t know about you, but that seems pretty accurate to me, hell to most of us that have been through heartbreak. One thing I do know is this, logically I know I’m enough. I know my worth. I know what I bring to the table. I am enough, and you my dear reader, are enough too.

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.

Hearing Loss, Masks & Ableism

This story was also published on The Mighty.

Thursday I was craving some fries from McDonalds, which is one of my safe foods due to my gastroparesis. So I placed a mobile order, I did curbside pick up, but it wasn’t letting me check in for pickup. So I went inside. The cashier was talking to me and I couldn’t understand/hear her. So I told her. Then the manager started talking to me. I repeated I can’t hear them. She started again. I yelled “I’m partially deaf, I can’t understand you.” Then she laughs! The manager laughed! There were several guys in the waiting for their food, one stepped up to help me. When I walked away, she laughed again! I was so angry and embarrassed, I was almost crying.

Masks have long been a challenge for those that are hearing impaired. Many have experienced horrible situations in being unable to communicate. This is NOT ok. This is stressful and honestly traumatizing. I have 30% hearing loss in my left ear and 40% in my right. I’m exhausted sometimes from straining to hear what’s being said to me by others.

Now you may think, what’s the big deal. Well the big deal is, for those in the hearing impaired community, reading lips is imperative to communicate. With lips covered, they can’t effectively communicate. Many won’t move their masks down, so their lips could be read. Many won’t write down on a pad of paper for the HI person, many make no effort to accommodate to provide effective communication. What is even more mind blowing is how often this is happening at doctors offices and hospitals. This happens way too often at doctors offices. I have told them, upon checking in for an appointment, that I am hard of hearing. I will not hear my name if called softly, or on the other side of the waiting room. Frustratingly it STILL happens! I had one appointment last year with an Ortho, I couldn’t tell you what was said. He wore two masks, and didn’t speak clearly. Again, this was AFTER telling him I’m hearing impaired.

The sad reality is, this is happening at an alarming frequency. We, in the hearing impaired community have lost valuable, necessary ways to communicate. This has left us reeling. This has left us experiencing frustrating, even embarrassing situations. The amount of times we’re ridiculed, ignored or absolutely no effort is put forth to communicate in a way in which we need is astounding. There’s countless videos on Tiktok of this happening, countless posts on Facebook detailing the same thing.

“The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”
Helen Keller

In all honesty, it’s disheartening.This is honestly ableist. Having experienced this over and over is emotionally draining. Today’s experience was completely unacceptable. It should NEVER have happened. It SHOULDN’T be happening to anyone! Struggling to hear so I can communicate, is that really acceptable? Is that really where we are? This is NOT about politics. This is about a community being left in the lurch with struggling to communicate due to masks. We need to find a way that doesn’t leave an entire community struggling to communicate. If you see someone struggling, please help them. Offer assistance. Work to find a way to communicate with them. Whether it’s typing on your phone, or writing it down. Be kind. Choose kindness and compassion.

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.

Body Positivity.. I’m a work in progress

This story was also posted in The Mighty.

Two years ago I hated my body. A year ago, I still struggled. I struggled with my self esteem, my self worth. I worked so hard to find what I love about myself, to find me. To love me.

I struggled immensely after two urgent surgeries in 2019 that left me with feeding tubes and a 4” scar down my abdomen. I struggled so much with self esteem, confidence and loving my body. I couldn’t see past them. Working with Emma and Lindsey from LuLi&Co, helped me to regain that confidence back. Thank you both for helping me to find myself, and to love myself again..

In January 2021, I had an urgent surgery to place a colostomy. I knew it was an eventuality, but it became a reality far sooner than I’d thought. After surgery I posted a photo of myself wearing a bikini (photo below) in an Ostomy Group. While most comments were supportive, quite a few were not. I was told I should be ashamed of myself for wearing a bikini. Ashamed for even considering wearing a crop top. That it was disgusting to wear such things and have my ostomy, or tubes on display like I was proud of them. In what should have been a supportive group, I was torn down. I was told I was disgusting, shameful. That it was the equivalent to having my butthole showing. Vulgar I know, but that’s what I was told. I was embarrassed for sharing a moment I was so proud of after spending years building the confidence to even wear a bikini. I cried. I let their words affect me. Being told by others in a group that was supposed to be supportive that it was disgusting, or something I should be ashamed of, is disheartening.

What bothers and hurts me the most, is how women are tearing each other down. There is so much negativity, judgmental and just harsh comments. Why tear someone else down? Why? If you don’t want to wear a bikini, don’t. However why tear down someone that does?? I am so immensely passionate about body positivity. Our young women see these comments. They see the judgment.. We’re letting them down, by shaming those that are confident, comfortable and accepting of their body. I want a young women with a feeding tube to feel confident in herself. To NOT fear what others will think, or say.

Emma posted about a project she was working on about body positivity. I jumped at the opportunity to be part of it. To show my vulnerability, share my story.. These photos below are a product of the project. The message is clear…

I have never hidden my struggles with my insecurities, I have been open and vocal about my journey to regain my confidence, to accept and love my body as it is. While wearing a bikini, or crop top to some might be weird or uncomfortable due to having a tube, or ostomy, I’m going to live my life for me. I will never hide who I am. I have fully embraced myself, and my body. I’ve become a fierce advocate for body positivity. I have worked to accept my body as it is. To accept me as I am. My tubes, scars and ostomy do not take away my worth, nor do they define my beauty. They are part of me, and yes I’m proud of them. Simply because with them, it means I’m alive. Words have power, but ultimately we are the ones that decide their power. I refuse to let the words of others impact or tear me down any longer. I may still have my moments, but I am not letting anyone dictate my beauty, or my worth. Neither should you.

To LuLi&Co, and Andrea Shea Photography, you have helped me to accept myself as I am. To see myself as beautiful. As strong, as amazing. Thank you so much. You have no idea what’s meant to me.

Relationships…and chronic illness

Dating isn’t easy. At any age, definitely not as we grow older. Relationships take work, trust, communication. You go through ups and downs. Breakups, marriage, divorce. There’s so many different things that go into a relationship, that make it work. Each one is unique, each partner is unique. Together, they’re a couple.

Being chronically ill isn’t easy. Dating while chronically ill is a completely different ball game. Relationships with one partner chronically ill can be challenging. I’ve seen far too many give up on their relationship, their marriage. They feel like a burden to their healthy partner, they feel unworthy. It’s easy to get stuck in that rabbit hole. To think we have nothing to offer. You do.

Having someone love you so unconditionally, they see past your diagnosis, they see past the worries, past the walls you’ve built. They see YOU. That is something amazing. Having a supportive partner can make a huge different in our own mental health while battling our chronic illness. Having their support helps lift you up, it helps you to not feel so alone.

Break ups suck. They’re hard, emotional, and at times absolutely devastating. I think it could hit those with chronic illness a bit harder. It could make us feel insecure, unworthy, not enough. When we end things without any real thought, or simply because we feel they’re better off, what are we really gaining? More importantly, what are we losing by doing that? Love, support, a partner? Why do we feel we can decide for them? Decide what they can handle, what they deserve? We make this monumental decision without discussing it with them. We break not only our hearts but theirs. If they want to be there, if they love you unconditionally… let them. Let them be there. Is it worth the heartbreak? Can you live with the regret of “what if”, if you end things? Can you look back years from then, and know you made the best choice? Will you ache for him/her?

I did that.. I left without a word. I gave up unconditional love. I gave up someone that loved me so damn much he put my health, my life before his. He was there from the beginning. Each appointment, 3 cardiac ablations, surgical follow ups, diagnosis, prognosis. He was there, and I walked away. I didn’t want to be a burden. I didn’t want him to resent me. This big, tough former military guy, and me.. Could barely walk, barely be upright. He deserved better. So I thought. So what did i do? I made the decision for him. I made the choice to walk away. With NO conversation of what HE wanted. Knowing he loved me. I broke my heart, and his by doing this. I damaged our bond, our trust beyond repair.

For 4 years I buried the pain. I buried the ache in my heart. The empty feeling I had. For 4 years I tried to convince myself I did the right thing. Then it all came crashing down. I checked an old email… and there were emails from him…So, I finally typed that reply to him… after 4 years. My heart pounded. Would he reply? Would he ignore me, as I ignored him. It took nearly 11 hours for a reply. After that reply, 3 hours after that we were on the phone. When I answered that call, it was emotional. It was instant tears. There’s no way to describe what I felt. There’s no way to describe what I felt for him. “Hey you”..was all it took to unravel the carefully constructed walls around my heart… “Hey you” was all it took, for every memory to flood me, for every emotion to pour into me, for every “I love you” to fly back into my mind. My world unraveled that night. But really..it unraveled 9 years ago when we met.. 9 years ago when I said “I love you” after he brought me donuts to my office, and I said it for the first time.

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

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

Since reconnecting in 2018, we tried to rebuild the connection we had. It was powerful. All consuming. Fire and ice. How do you rebuild what you had? How do you talk through the heartbreak, the distrust? How do you forge ahead? It’s a lot of work. We tried. We tried so hard. We talked about the future. Our dreams, our hopes. Unfortunately we couldn’t get past the broken trust. He couldn’t get passed the betrayal of when I left. He couldn’t let go of the pain, of the heartbreak and rebuild. Things went from talking marriage one day, to “I don’t know if i can do this”, the next. How do you process that? How do you cope with that heartbreak? Honestly? Sheer devastation. Realizing I ultimately caused this. Realizing my making that decision for him years ago resulted in this heartbreak. In twice the heartbreak for both of us.

Does silence mean break up? Does it mean he needs time? At what point do I decide whether to move on or stay just a little longer with a sliver of hope? Is it even wrong to have that sliver of hope? I have anger, a feeling of abandonment, hurt, betrayal. I want to cry, I want to scream. I want a conversation on why. Why make all the promises that he’d never leave, that he’d always be there, just to leave? Why let me have the hope, just to leave? Why wasn’t I enough? It hurt. I was lost, confused, unsure of what happened, why we couldn’t fix it. Some days I want to give in to the hope. Others I want to move on, find someone that will love me, encourage me, support me..How do you walk away from someone that you loved for over 9 years?

I know my worth.. Ironically, he helped me to see that. I know what I bring to the table. I know heartbreak. I know love. Trying to heal the heartbreak, the heartbreak. Healing the anger, healing the hurt. Healing the hole that was left behind. The sliver of hope wont let go, that sliver holds on. Your heart says wait, while also saying you deserve more. What do you listen to? How do you decide? It’s a hard decision. It’s heartbreaking knowing that “always & forever” came to an end. All the letters he wrote, our pictures together, the bottle of his cologne. Do you hold on to it all, or let it go? This is a battle, yet this time I know my worth. I know that i’m a Queen. I made a mistake in the past, I worked hard to make amends. I can’t force someone to love me, to be with me. I love myself too much to beg anyone, I deserve better than that..

Really though, a simple conversation about what happened. Just talking, like adults. That could ease the pain for us both. Though there comes a point, a time where you have to do what is best for yourself. It doesn’t mean you don’t love that person, It means you love yourself too. That you’re putting yourself first, that you know your worth. It isn’t always an easy decision. Most times we agonize over it. Over whether to stay or leave. Sometimes we feel like we were forced into the decision. Walking away isn’t easy, not when you love someone, though sometimes the decision is made for us.

Dating, relationships with chronic illness isn’t easy. Just don’t give up. Don’t give up love. Don’t make that decision for him. That’s not right or fair. Our health doesn’t make it easy, but please know you are not a burden. You are not unworthy. You are so worthy. Tip your chin up, straighten your crown, you are more than worthy..

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.

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Heading Home, Finally

Finding out More Information

What’s Next?

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