Tag: support

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. 

Me in July 2024.

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.

Quote from Ed Troxell

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. 

Me as of May 16, 2024

 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. 

Me post op, December 22.

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.

Surgical Incision

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.

Freedom in Body Acceptance

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Body Positivity, Self Worth, Depression, Insecurities, Counseling.. Why are these words, these phrases so taboo in the chronic illness community. Why are these barely talked about? Is it supposed to help us by not acknowledging these happen? That these can affect us? It doesn’t. It actually hurts us. Positivity in general seems to be ridiculed in our community. Why? 

I’m in my 30s, I struggle with insecurities and body image issues. I’ve been very vocal about my struggle. Yet so many still hide theirs. So many still don’t acknowledge it. Some ignore it or think they’re taboo to talk about. I have struggled tremendously for the last year. Since getting my feeding tube, I’ve struggled to accept my body as it is. Scars, tubes and all. So many others have tubes, central lines, ostomies, scars, medical devices. So many others struggle with insecurities, yet it’s rarely ever discussed? Why? Why is this so taboo? Why is there not more of a network, more of a community lifting each other up? 

If we as grown women struggle, what is this doing to our young women in these communities? What is it doing to them to see absolutely no one speaking about these struggles? Seeing no one like them out there blasting beauty standards to raise awareness and empower others? Why is there really NO ONE out there doing these things? Showing their body acceptance, showing their vulnerability? I’m not sure why, but it’s motivated and empowered me to be that someone. Someone has to speak out. Someone has to start something to show body acceptance and positivity. Someone has to show body positivity to these young women, young men, anyone struggling that feels alone in their fight. 

There seems to be a struggle with body positivity. We are letting others define us, define beauty, define our worth. We are letting our diagnoses, tubes, ostomies define us. Letting them define us as unworthy, unattractive. Body positivity is so important. It’s so important to lift each other up. It’s so important to acknowledge these topics, these struggles and discuss them. We have let what society has deemed “beautiful” affect us in such a negative way. We have let others decide whether we fit into a mold or not. Guess what, we don’t. That’s ok! We don’t have to. We’re not made to. Our beauty and worth shouldn’t be based on what fits a mold. Let’s break that mold. 

I’ve struggled with this so much. It affected me deeply, it affected my relationship immensely. Counseling helped, friends helped. What really helped was someone told me: “Who cares what others say is attractive? Who CARES?! If you feel it, then you feel it! Stop trying to fit into society. Stand out. Stand up for yourself.” I remember sitting there, taken aback. Then i thought about it. They were right. I had let others’ words, others’ views affect me so much, I couldn’t see my own beauty, my own worth. My self esteem didn’t improve overnight. Goodness no. It took months of work. Months of positive self affirmations. Months of talking about my insecurities to really start to shed them. Start to being the key word. It’s a process, and ongoing process. Every day is a small step forward. 

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Depression is also another struggle. I have struggled with depression for a while. Sometimes it goes hand in hand with my insecurities. However, this isn’t discussed much in support groups. It’s almost like we should be ashamed of it. Absolutely NOT! Never be ashamed of your story. Of any part of your story. Never be ashamed of your struggle. I refuse to be ashamed of it. I refuse to hide it, ignore it, or pretend it doesn’t exist. I can’t. Why lie? Why is this such an issue to discuss? I don’t understand it. Depression happens, it happens when dealing with chronic illness. How could it not? It’s hard to adjust from one life, to this “new” life. It’s like grieving. You’ve lost who you were, now you’re struggling to find who you are, and who you’ll become. It’s ok to be angry, hurt, upset, depressed. It’s ok to feel emotions. My only advice, don’t let them control you. Don’t get so lost in them you give up living. Please, if you feel that anger, that hurt, that overwhelming sadness, reach out to someone. Reach out to me. I’ll listen as you vent.  Reach out. Just know there’s someone struggling similarly. 

It’s become my mission, my motivation to help others. To empower others to see their beauty, their worth. I’ve posted several blogs on this. I took it a step further and have participated in photoshoots. Creating powerful images that show my strength, my motivation, my beauty. These photos weren’t easy to do, it was scary and nerve wracking. What kept me going and motivated was that I was determined to LOVE MYSELF. I was determined to see MY worth, my beauty. My tubes don’t take away from it, they don’t take away from my strength, from my worth or my beauty. They do not change who I am at a fundamental level. What they’ve done is give me strength I didn’t know I had. They gave me courage. They gave me passion, and desire to help others. They gave me purpose. They have motivated and empowered me to do that for others. To show others their beauty, their worth. My tubes in a way gave me freedom. Freedom to knock down beauty standards and create my own. Freedom to strive for goals, freedom to find my passion and help make changes. Freedom to love me.

These “taboo” topics need to not be so taboo. These topics need to be discussed, need to be acknowledged. We as a community deserve more. We deserve love, happiness, goals, hopes and dreams. We are worthy. We are absolutely beautiful. You are warriors, you are fighters. Never give up. If you feel like giving up, know you have a community of warriors behind you to lift you up, to lend you strength. We won’t let you feel alone in this battle.

This post was also published on The Mighty: What Helps Me Overcome My Insecurities as Someone With Chronic Illness

Let’s Talk Endometriosis..

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March is Endometriosis Awareness Month.. So let’s talk about it. What Exactly is it?

Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.  Mayo Clinic- Endometriosis

Now that we know what it is, let’s talk about it. I was diagnosed with it at 15/16. I was told I would probably never have kids. I remember sitting in the doctors office, the doctor telling me at 16, I’d probably never have children. I remember feeling so heartbroken, angry and confused. Why? Why was this being told to me. I didn’t understand at the time. No one really explained any of this to me. Soon i’d find out just what it all meant.

I had been rushed into emergency surgery in 2003, I was 17 years old. I had an ovarian cyst that had ruptured. While in surgery they removed my appendix, since most doctors were dismissing my pain as appendicitis. This surgery started what would become the “norm” for me. Another surgery revealed I was at Stage 4 at 18 yrs old. Unfortunately this wasn’t documented well by the doctor then. All we knew was that it was “everywhere”. We tried Lupron Depot, birth control. Various treatments to manage my symptoms and pain. Which just seemed to worsen each month. Lupron depot made it so I no longer had a menstrual cycle. This way they could manage the pain a bit better, unfortunately this led to other side effects from this medication, which is actually classified as a Chemotherapy medication. Here I was 18-20 and in menopause, on “chemo”. My life consisted of painful periods and doctors appointments.

My mom and I began to research. We found an amazing team of doctors in Atlanta at the Center for Endometriosis. I submitted a lot of medical records, and received word I would be taken as a patient. So off we went. Another appointment. Another doctor. This time though, we had hope. I was going to the best of the best. Little did we know just how things would go.

The consultation was overwhelming. I was basically informed i’d need another surgery. We prepared, we made plans. Traveling back and forth from South Florida to Atlanta wasn’t easy, but my mom made it happen. I was 20 years old, supposed to be in college and my periods were so bad I couldn’t function during that time. I remember my mom and I having the discussion. Me saying, “don’t let them take everything. I want a chance to have a baby later in life.” We expressed this to my doctors, Dr. Sinervo and Dr. Albee. They were aware of my fears, my anxieties, my desire to be a mom. They assured me they would do all they could. That day… that day is forever etched in my mind. Waking up in my hospital room. My mom sitting there, waiting for me to come out of the anesthesia. I looked at her, saw that she’d been crying. I asked her, “I lost them didn’t I? You took them out?”. I screamed, yelled and cried. Not only out of pain but heartbreak. She held me as I cried, as I mourned the loss. It may sound silly to some, but to me it was heartbreaking. She told me my entire right side was covered in endometriosis. The worst case they’d seen in someone my age. I had it on my right ovary, fallopian tube, intestines, pelvic wall. It was in a sense everywhere in my pelvic area. My mom had to make the decision for me, she had to make the decision to remove organs. Make the decision for her 20 year old daughter about her future. She agreed with my surgeons, remove the right side. So at 20 years old I had a unilateral salpingo-oophorectomy. This means, my right ovary and fallopian tube were removed. They did this to remove the endometriosis, to buy me time.

I then had to have a LEEP procedure due to pre-cancer cells found on my cervix.. Then.. then a miracle happens.. I end up pregnant in 2008. It was a shock, lots of crying. For 9 months there was no endo pain. No hellish periods.. It was glorious!

My son is now 10, he’ll be 11 in April. I’m 33 and I still battle endometriosis. I’ve battled it for 18 years, I’ve had 6 surgeries in total for it. My last one was in May 2018. They found two endometriomas in my left ovary. Once again my doctor did all he could to give me a chance to have another child. I’m once again at Stage 3. We’re considering reaching back out to the Center for Endometriosis Care. I need another surgery, however after 8 abdominal surgeries, they’re waiting until it’s absolute necessity.  I’ve had severe scar tissue. Scar tissue and adhesions on various organs, in various places. Scar tissue that made placing my feeding tubes, very difficult. It turns out the severity of my endometriosis has created quite the problems in my pelvic area. Intestines are fused together, bowel issues, bladder issues. Things you wouldn’t think about endometriosis affecting, but it has far reaching consequences. Even with my J tube, there’s damage from my endometriosis. They’re saying “frozen pelvis”. It’s horrific to realize just how damaging endometriosis is, and how little it’s explained.

I’m in pelvic floor physical therapy to help with various symptoms from my endo. I have trouble going to the bathroom, both #1 and #2. This is being attributed in part to my endo. Horrific menstrual cycle pain. Every month i’m out of commission for a few days. I’ve tried birth control, sadly they just make my cycle last for weeks, which I can’t cope with. Pain with intercourse, pain with bowel movement, pain with movement in general at times.. These are things rarely discussed or acknowledged by some doctors. Things that are often dismissed. I’m hopeful that Pelvic Floor PT can help, if anything, may be it can help with going to the bathroom. Or help with the pain. Even in some small way would be appreciated.

Knowing i’m running out of time, knowing that each month my pain and periods are absolutely horrendous, knowing I need more surgeries for my endometriosis, it gets to me. Sometimes I debate if it’s time for a hysterectomy. I begin to accept that fate, then it becomes too overwhelming for me. Too much, too soon. I know that’s my eventuality. I know that is what I will end up needing, but how do you mentally prepare for that? How do you mentally prepare for no longer being able to conceive? It’s not easy. In 2019 it was discovered I have a hydrosalpinx. Meaning my only remaining tube is blocked. I have to see a fertility specialist to see just how blocked. I haven’t prepared myself for that yet. I can’t determine which would be easier, just doing the hysterectomy and giving up, or trying with the fertility doctor, and having hope. How do you make that decision? It’s incredibly difficult to make.

The emotional damage from my salpingo-oophorectomy was immense.  I felt like less of a woman. I felt broken, damaged. I wanted to be a mother, and here i’m facing that I would probably never be a mom by natural ways. Depression, anxiety it was there. I had to work through the pain, not just physically, but emotionally as well. That’s what no one tells you about endometriosis. Yes physically the pain is unbearable, but emotionally, it’s unbearable at times. No one talks about the mental and emotional aspect of living with endometriosis. I’m not sure why, is it taboo? It needs to NOT be. It needs to be discussed. Women struggle with both aspects of pain. Let’s be there for them. Endometriosis is hell. It’s physically and emotionally painful. It robs women of their joy, their lives, even motherhood.. their hopes of motherhood are dashed at times due to their pain, or severity.  It can affect relationships. It can damage them. We feel inadequate. We wonder why our partner stays, we wonder how a new partner will feel when they find out you may not be able to conceive. Don’t push your partner away. Communicate your feelings, your fears with them. Lean on them. Let them help you face this.

The feeling of being unworthy due to being infertile, or due to the struggle and pain with your endo. The feeling can be so overwhelming, so soul crushing you can’t breathe. You scream; “Why”, you beg and plead. You try to grasp this, try to grasp how this happened. You feel alone, broken, scared, angry. I assure you, you’re not alone. You’re not broken. You’re not less than, you’re not inadequate. You’re not unworthy. It’s ok to be angry, it’s ok to be scared. You’re worthy of love. So damn worthy. Just know you have a community of women behind you lifting you up in your time of pain. We are here, we will help you shoulder this. We are a sisterhood. We are a community. We are fighters with hope for a cure.

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Anemia, And Hearing Loss you say?

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I survived Thanksgiving! This year was my first year with my tubes!! It was hard, but we kept it small this year, just my mom, my son and I. My mom made a crustless pumpkin pie for me, which was great. Keeping it small really meant alot. I was invited to spend it with my dad and his girlfriend, but I didn’t want to spend it trying to navigate eating or not eating in a group of people. Hopefully next year I’ll be pretty well adjusted!

Now I’ve had some hearing loss, it’s mixed hearing loss. Meaning both conductive and sensorineural. We have a small idea why i’m losing my hearing, which is from a genetic mutation I have. My ENT is great and is recommending hearing aids at this point, due to struggles i’m having with certain situations. It’s overwhelming. I can say how many take hearing for granted. We never know when or how things can change for us. We always think, “Not me”.. Don’t think that way. Despite it all, and how overwhelmed I have been, I have confidence that it’ll be ok. One way or another.

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Now my tubes have been a bit complicated. It’s been a lot of ER visits. Last week my G tube nearly fell out!!! WHAAAT! Luckily I caught it right before it fell all the way out. I spent hours in the ER making sure it was in the right position (I pushed it back in), and having them secure it until Interventional Radiology could replace it the next day. It seems my balloon popped! Now idea how, and it’s so weird. Luckily IR got me right in the next morning and replace it within 5 mins. YES! IR is the best! I’m finally working my way up to continuous feed. Which means 24/7. I’m hoping to increase my rate so I can disconnect for a few hours a day! Being attached to a feeding pump or iv pump is frustrating, but the alternative is far worse. In time i’ll get back in to a routine. My intestines are being sluggish, which is creating a new set of problems. I’m also now anemic. More bloodwork now to figure out why, and to determine how we fix it. Hopefully it’s an easy fix. We decided if it’s low iron, we’ll do iv iron, so we don’t run the risk of my not absorbing it if taken orally.

We don’t realize just how much is affected by digestion, or lack thereof. Many don’t think of vitamin deficiencies or not absorbing the right amount through eating vitamin rich foods. With my gastroparesis, I have absorption issues, which in turn creates vitamin deficiencies. I’ve been experiencing extreme fatigue, hair loss, pale skin, and horrible freezing cold hands/feet. I’ve tried to eat regular food, it’s left me really sick each time. It’s just not worth it, but how do you give up food? How do you get to the point of accepting this is life? Tube fed, and applesauce and pudding are what you can safely eat? It’s left me angry, but again, in time i’ll adjust and accept it more and more.

Let’s talk beauty. Let’s talk self esteem. You’ve all seen my posts about how i’ve struggled with my insecurities. I currently have a few things in the works behind the scenes. I can’t announce just what yet, but hopefully soon I can! I will say, I aim to inspire, encourage and uplift others. Regardless of what you battle, YOU are beautiful and worthy my dear little warrior! Once my channel and videos are posted, i’ll link it from my site!

Feeling attractive, loved, and worthy is all so hard while battling chronic illness. Battling your body daily just to do simple function leaves you exhausted. Learning to love your body, which sometimes feels like a prison is hard. I urge you to not give up, find what you love about yourself, find your strengths, find you. Never give up. I know at times it feels like you can’t go on, or it’s not worth the fight. It is! You ARE worth it. When people compliment you, don’t question it, don’t scoff or roll your eyes.  Accept it, believe it. If you ever need an ear, shoulder or just someone to vent to, reach out to me. If you feel all alone, reach out. There’s a community behind you, lifting you up.

 

Check-it-outHere’s my latest project! It is now LIVE!!!  Tubie Photoshoot

 

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