Tag: PTSD

My People : Part 1

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One of the lessons that was hardest for me to get in therapy, was that there is good in all situations. This is a hard thing to believe for someone who has lived a life that has had more than its share of trauma and hard times. It is hard for a brain with C-PTSD to look at the hardest parts of their life and think, “That was bad, but hey, silver lining!”.

I didn’t see things like building resilience as an upside to the things I had been through. I thought I would rather have no resilience and an easier path. For a very long time I had a horrible time accepting the compassion and empathy of others. Receiving those things made me feel like people felt entitled to more of me than I wanted to give them, I thought that they simply felt bad for me, the “poor little sick girl”. I hated to feel pitied or worse and for lack of a better term like inspiration porn. I had many lessons early on  that taught me to be leery of people who did not know me well, yet were overly interested in the circumstances of my life (thanks dad!). I had to unlearn what I thought I knew and come to terms with what was more likely –  most people are compassionate and genuine with no strings. 

This week I was given what felt like my final exam on this exact subject. Could I accept true kindness and compassion without feeling like I was being pitied, or portrayed as a victim of my own life circumstances? 

Before I get into my final exam I need to adequately describe how uncomfortable displays of solidarity, compassion and generosity previously made me. Perhaps uncomfortable is the wrong word, let’s try blindingly angry, yes I think that fits better. Previously when I was on the receiving end of acts of kindness, and generosity due to my medical condition I would enter my therapists office fuming, raging, mad. I felt like I was in a Catch 22. I needed people to know about what was going on with me in order to be safe in case something went wrong, and to be understood when I needed time off to deal with it. I could literally not fathom that a side effect of people knowing my situation would result in genuine concern and desire to help. When those things happened because I surround myself with good people, I wanted  to crawl out of my skin and into a dark little hole. I didn’t want to be seen anymore. I felt like I had revealed too much. Like the Wizard of Oz, they had seen behind the curtain and knew that I wasn’t great and powerful, after all, I was in fact just a human, doing her best. At the same time I was angry to have people’s empathy which I mistook for pity, I also felt incredibly guilty for people having any feelings towards me at all. I felt like I had gotten “too close” to people, because I wanted to minimize fall out if something awful did happen to me. I felt unworthy of the love and kindness I was shown. (Have I mentioned that I have been to a lot of therapy and am doing much better now?) 

I am incredibly lucky to have worked in a phenomenal school, with amazing people for the last 15 years. I have worked with most of my closest co-workers for that whole time. Having people I am familiar with and are familiar with me has been an incredible blessing over the years where my health is concerned. They have always had my back and made it as easy as it can possibly be for me to take the time I need to deal with my health. I have not always been the best at receiving that kind of support, but they have always taken awkwardness in stride. Earlier this week they truly outdid themselves.

I arrived at school wearing a tie-dye shirt, super typical for me. I was amused and delighted that many of my friends and co-workers coincidentally were also wearing tie-dye. How crazy! I commented over and over. I am rambling on about the amazing coincidence of all the tie-dye and rainbow colors everyone is wearing when my co-worker fesses up and says to me “We did this for you.” I thought she was joking and I laughed, “Yeah you guys planned to be a rainbow for me.” Everyone else in the room nods their heads and confirms that yes indeed they planned this for me. In fact they tell me the whole staff is wearing tie-dye and rainbows for me and by the way I’ve just been Venmoed an incredibly generous amount of money the school raised for me last week. The only coincidence happening here was that I decided to wear tie-dye  too. Amazingly no one hinted I should and no one told me. My therapist would call this a synchronicity, an outward sign that we attract what we need in our lives. I am beyond thankful to have attracted these much needed people into my life.

The donations were extremely kind and generous but I have to say walking around and seeing my coworkers (many I don’t know that well) dressed in tie-dye for little ol’ me? It was an incredible sight. It was just amazing to have a visual of all the people in my corner, just in this one place, this one building, altogether about 50 co-workers were dressed in tie-dye, it blew my mind. All of this, and not one time did a single one of those pesky thoughts that I have had in the past about being seen as weak, or someone to be pitied. No worry about what knowledge or access others may feel they were entitled to, and no feeling unworthy of the demonstration of love and kindness was in sight. I did it. I passed this final exam. Never (yes never) before have I been able to receive this kind of expression of solidarity and love without later feeling overwhelmed by those negative thoughts and feelings. 

I am so thankful for all the people in my life who have been so kind and supportive of me. I have such a vast and diverse network of people who I love and who love me. I am not quite sure what I have done to deserve them all. I haven’t even gotten to the hard part yet and my people have shown up, from every part of my life, in every way I could ask for. 

Aunt Mo

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The summer of 2007 was a very strange and difficult time of my life – my early twenties. I had recently turned 25, lost my long term job that I loved but was killing me, and had met a friend with a heart like mine, only to lose him a few months later when that heart suddenly failed him. I spent a long time on my couch feeling sorry for myself, a really long time. My best friend and roommate would go to work, leaving me in my pajamas on the couch and come home 12 hours later to discover me in the exact same place. It wasn’t my best moment. To say I was floundering would be kind, I think some may have even called this my personal quarter life crisis. 

Enter stage right a wild haired baby boy, who would give me the name that I wear with most pride, Aunt Mo. I don’t want to overstate the importance of this little man’s birth, but it is pretty easy to say that his arrival was the catalyst for a lot of change in my life. There was this moment after my nephew was born that due to a series of unfortunate events, he and I ended up in a hallway together. My sister, her husband, our mother and a nurse were all in the new hospital room where the new party of three had been moved because of construction noise and somehow this left my hours-old nephew and I alone together for the first time. He was wide awake, and taking in the world around him, tufts of unruly hair peeking out from underneath his tiny hat. He smacked his mouth, made little squeaks, and waved his arms around. He was so small, and his eyes so wide. That moment has always felt very important to me. At that moment I knew two things, I wanted to be around this tiny human as much as my sister would let me, and that in order to be around this tiny human I was going to have to get my poop in a group. Depending who you ask, that is what I did, at least comparatively. 

This is all to tell you that,  of all the things I am, being his, and his cousins (and that previously mentioned  roommate/best friends two boys) Aunt Mo is my absolute favorite thing to be. It changed my make-up and truly the course of my life. Suddenly it wasn’t just about me, I had this little dude who lit up every time I showed up at his house, who reached for me when other people were holding him, who learned my name quickly after mama and dada. I spent a lot of my teens and twenties fighting against my health challenges, avoiding the doctor as much as I could, not taking my meds how I should be, living my life in less than healthy ways. I had a live fast die young kind of attitude. I really didn’t believe I would be around that long, so I didn’t do a whole lot to help myself out, until my nephew came along. He made me want to try the next thing, the new med, the next fix. Where I was once bitter and angry, I was optimistic and hoping for any solution that meant I got as much time as I could possibly have with this little dude that showed up one September afternoon and completely turned my world upside down. 

I write this all because I think it is an important piece in the puzzle of how I ended up here, a week away from seriously discussing heart transplant, and honestly not being very fearful. I was, for sure. That was the shock, and in some ways I suppose there is still some fear mixed in there, but more than anything I am excited. Everything I have said yes to over the last 15 years has been about having more years with my nephews. From the pacemakers, to the ICD, every heart cath, stent ballooning, ER trip, device shock, every test, every blood draw, every new medication, and every side effect has been in the pursuit of more time. More time for me yes, but in the beginning and still most largely for him, that crazy haired baby in the hallway that I knew I wanted to see grow into a man. And for the twin boys who came two years after him, who are my soul’s own twin, and my brilliant and delightful opposite. 

I know they are apprehensive about what is to come for me. It is only fair that they would be. I can’t promise them that everything will go exactly as I plan for it to go, but I have every intention of everything going right. I expect to be there when they graduate, get jobs, move away, try to lose touch and fail because I am an annoying and clingy aunt. I plan to be there as they become fully functional people. I hope one day, one of them has a house big enough for old Aunt Mo, to move in with her ancient Corgi and too many books. 

I am so proud of who they are. I am so thankful that they, as much as they can, understand that sometimes I need to borrow their moms, my sisters, because we are an important team. I hope that one day they feel as much a part of that team as I feel like they are. They are the best part of the team, the light part, the part that brings the joy and the laughs when everything else is too serious. I hope they know that their Aunt Mo loves them so much, that she learned to love herself too. I hope that they can be brave with me as we walk this road together. I hope they know that it is okay if we can’t always be brave, and it is okay to be scared, because even the scariest things aren’t that scary when you are on our team, and I am on their team always. I hope they know that more than anything else in the world, I am so glad to be their Aunt Mo and I plan to be there for them for a very long time.

The Ugly Truth

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The ugly truth is, all of this is easier without him. Something I have finally allowed myself to admit, to say out loud, to take the first steps to work through. I am not 8 years old anymore and hindsight truly is a gift to vision, and I see clearly that no matter how I wanted him to be different, he simply was who he was. 

I have debated writing this, wondering if this crossed the line of what I am willing to share publicly. I also know that I have many reasons for writing these excerpts from this time in my life and I want to tell this story fully. Letting this stuff out is helping me, but I am starting to see that it is also helping others. Lots of isolating feelings grow in the dark, the best way through them is to show them the light, and if showing some of those feelings the light here helps others, all the better.

My father was a simple man that in many ways was complicated. If you knew him you would probably describe him as the type to give you the shirt off his back. I can’t disagree. He likely was like that –  to you. It wasn’t so much like that with his family, at least not his daughters or their mother. There is a whole lot to that story that isn’t just mine to tell and so I won’t, I will only tell the part that is mine to tell. 

I don’t know if dad ever really knew how to cope with being a parent much less with being a parent of a “sick” kid. All I know is that every memory I have of my early life in hospitals, when my parents were still married, is of just my mom and I. Every doctor appointment, every hospital stay, every surgery. Just mom and I. I can’t say that is 100% accurate, I am sure there was a time or two he was there or it was him but I don’t remember. I know he took me to the ER twice with a broken arm, just he and I, once the first time I broke it on my roller skates and then again the day I got the cast off and broke it again falling off a horse he put me on. That was dad. 

Once my parents were divorced however dad made my medical appointments a spectacle. He had to attend every one and make sure he was as much the focus as possible.  He didn’t usually come into the room with mom and I, preferring to stay in the waiting room and play his favorite game “my kid is sicker than your kid” the prize?  The sympathy of strangers. I hated that game. If you know me at all you know, the last thing I want from anyone is pity or sympathy. Still, he played on. Every single appointment, I would come into the waiting room to some random person telling me how “strong” or “brave” I was. All I could think was how much I wanted to stomp on his foot and run to the car. I hated feeling like his little trained monkey. It was the same act with women he dated. It would come time for me to meet them and the only thing they would know about me is that my heart was backward. It seemed that was the only thing he knew about me either. 

As I became an adult our relationship became more and more strained. For reasons I no longer remember (likely spite), he wanted me off his insurance the moment I turned 18. It was really great insurance, I could have stayed on it until I was 26 but he wouldn’t have it. My mom took the insurance over. Even though my medication and medical care was extremely expensive, and he was financially very secure he rarely helped. He could buy all kinds of “toys” but it took near groveling to get any help with such expenses. He had this fun habit of waiting until the very last minute when there weren’t a lot of other options so he could swoop in and be the hero, strings attached of course. Always strings. 

In an effort to not sound like all I wanted from him was his money, allow me to elaborate further. I had many hospitalizations and surgeries through my 20’s and 30’s. I always made sure he knew about them. I made sure he knew what was going on, what hospital I was trying, what surgery, what medications, etc. I kept him in the loop, even if he wasn’t invited to be there because I was over his behavior when he came, he was always informed. Beyond the moment I informed him of what was going on, I wouldn’t hear from him. He never called, text, sent a card or a carrier pigeon. He never checked up to see how I was. Never. 

I had my first major surgery since I was a baby in that time frame. My chest was opened in three places, recovery was incredibly tough with a collapsed lung. I was in rough shape. He knew what was happening, my sister had called him. He never called me. My sister told  him how rough it was for me and still I did not hear from him. He did not call me. He did not check in. 

In the final years of my fathers life, as angry as I was about these moments I swore I would be the bigger person. If he was having surgery, I would drive the hours to where it was happening and I would visit. If he had a heart attack I would be there. I showed up. Every. Single. Time. And there were a lot of times. Those visits were not conditional, I was not going so I could say to him, “Hey I came and checked on you, you need to check on me.” I was going because I wanted to make sure he didn’t feel the way he made me feel when he didn’t at least check in and see if I was okay. I wasn’t going to let who he was change who I was. I was the kind of person who visited their dad in the hospital even if he wasn’t the dad who did the same. 

So the ugly truth of the matter is, all of this is easier with him gone. I don’t have to have my heart broken by his callousness. I don’t have to worry about him using my situation  to gain other people’s sympathy without my knowledge or consent. I don’t have to manage my disappointment when he isn’t the dad I always wished him to be. The kind of person most people would say would give you the shirt off his back, but wouldn’t pick up the phone for his own daughter. I don’t have to endure another heartbreak at his hands. 

There aren’t a lot of people who understand the complex feelings that come with having a father like mine. I get that. I am glad for that. Let me make one thing very clear, for anyone who may feel like this post is mean, or even cruel. I loved my dad, to the very end I loved him. Our relationship was complicated, and broken, and in many ways so was he. I know that. I have spent a long time and a lot of therapy  coming to grips with that. I have also learned that two things can be true at once. I can love my dad, I can even miss him, and still be relieved that I don’t have to endure more heartache. I can still be mad as hell for the way he let things play out, I can still be so sad that he never seemed to understand that I was trying to show him how to love me, and he just never seemed to be able to do it. It may be ugly, but it is the truth.

One of the biggest lessons I have learned in therapy is that sometimes people teach us really important things in really negative ways. My dad more than anyone taught me how to forgive. He taught me how to keep a cool head in the moments his was not. And most of all he taught me to remember what comes back when I give away my love, because it isn’t always the love you want or deserve.

“But most of all
He taught me to forgive
How to keep a cool head
How to love the one you’re with
And when I’m far into the distance
And the pushing comes to shove
To remember what comes back
When you give away your love”

Brandi Carlile – Most of All

Getting My Sh!t Together.

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Waiting sucks. Waiting with very little information is even worse. A month ago when I had my appointment and was told that it was time to start moving forward with transplant preparations, I delayed that appointment. I could have avoided the wait,  I was offered an appointment only two weeks later. Obviously if I didn’t want to wait I could have taken that appointment and what is unknown now would be known already. The problem is I knew I wouldn’t be ready. I needed some time to feel all the feelings I was having and let them all have their shot to completely consume me, and over the last month they really have. I took the time I needed to process, to cope, and to work through all the feelings in a…get this…healthy way. PTSD is a helluva thing, part bodyguard, part magician, if you aren’t at least a little prepared for the trigger, it will throw up the defenses and let nothing and no one through at best, or abracadabra your consciousness completely out of there at worst.  I needed to get my shit together so that when the time came to walk into that room I had a shot in hell of remembering a word that came out of the doctor’s mouth.

Now here I am, feelings mostly processed (there are always going to be things that pop up and unexpected triggers here and there) ready to get rolling and I have another three weeks to wait before the most burning of my questions can be answered. As much as I have been working on feeling my feelings and coping with triggers I have been working on staying present and trying my best not to worry about the future (yeah right, do we understand what is looming out there?) and letting go of the need to control. I know I can’t control what happens next, how fast things move, or what kind of news I get. I know that. What I can do is take control of the things that are in my power, and so I am getting my shit together. 

A few weeks ago I asked my sisters for help. There is no way I could ever express how thankful I am for the way these two have always supported me through all my medical adventures and misadventures. They are my twin protectors, enough brain and brawn between them that there isn’t a need to assign either attribute to just one of them. They use both to help me make sure I am getting the best care, hearing my options, understanding them, and supporting me while they let me make the best choice I can. I know this process would swallow me up if I had to do it without either of them. 

As we chatted about the things to come and my worries, it was obvious that I was going to feel better the more that was finished, off my plate and I could say I didn’t have to worry about anymore. Being the furthest away and the biggest nerd my middle sister took on the job of what we like to call my personal CFO. She has built about a dozen spreadsheets of information that we will need going forward, making it easier every time I need them. Together we have figured out a lot of the what-if’s of my finances, filing for disability, and future medical coverage options. She has found resources for everything, and given me the option to fill in documents as I have the time and mental capacity to do so. Over the last month, we have completed almost every form I will need completed in the short term and it feels amazing. My older sister who lives closer, will be boots on the ground, ever the analytical thinker, she is the question asker, she thinks of things I never would have and is good at hearing and understanding answers even when I have peaced out of the conversation for mental preservation.

My mom historically has been the brain, the brawn and the comfort, through my medical procedures. Now that my sisters are involved I hope she feels the same relief that I do, and can enjoy being just the comfort for a while. Recently, a couple weeks after my sisters and I talked my mom came up and helped me get my house in order. Literally. I do a fair job of keeping my living environment clean and tidy, but there are larger cleaning projects that fall by the wayside due to my physical limitations. Having her come and help get those things done has helped me so much. It is so much easier to keep a home clean when you aren’t bummed out about the things you keep avoiding because you can’t do them. Talk about comfort, not only was our time together a recharge, it feels great to clean up a room and have it really feel clean. 

As this all unfolds all of our powers will combine and there is nothing that we won’t be able to get through. We have been training for this moment my whole life. It is go time. I may not know what this appointment or the next few years will bring, but I am organized and ready. For what feels like the first time in my life, I have my shit together.

What I Mean When I Say I’m Fine.

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What I mean when I say I’m fine. 

When I say I am fine, I mean that right now I am handling everything on my plate even if some of it feels like it is slipping to the edges. 

When I say I am fine, I mean that when I woke up this morning I was able to win the tug-of-war between staying in bed and starting my day. 

When I say I am fine, I mean that I can ignore the pain in my chest, and the way my head swims when I stand.  

When I say I am fine, I mean that I am taking care of myself, and protecting my energy, not that I don’t want you to bother me. 

When I say I am fine, I mean that I am doing the work, using my tools and keeping my mind right. 

When I say I am fine, I mean that I don’t care to talk about any of it right now, I have found my footing and I worry that talking about it will send me off balance again. 

When I say I am fine, I mean that I can’t stand to think about causing anyone to worry, so please believe me when I tell you that – I am fine. 

I am fine. I am okay. I am safe. (Is this a mantra I repeat to myself on the regular? Yes.) Depending on the day I am even doing pretty well considering. I feel like I am gaining a bit of stamina back for work, and it is becoming easier to make it through the week without feeling like my tank is completely empty. I have been slowly adjusting my mindset to accept my new baseline. A friend of mine who is a few years post transplant gave me that word, baseline. They expressed how much they hated the phrase “new normal” and I really feel that too. Nothing about this is normal. There is nothing normal with allowing yourself to slowly get sick enough to allow a team to take out your heart and give you someone else’s. I like the term baseline, and my baseline has changed and it will continue to change for a long while for the worse. I try not to think about that, I prefer to think about the time beyond that, when my baseline improves for the better. What a world that will be.

Why I Dislike the ER.

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Earlier this week, I didn’t feel well. About half way through my day on Monday I started feeling off. I was tired – not all that out of the ordinary, I was lightheaded – this was out of the ordinary, and finally I started experiencing chest pains, this was worrisome. I decided this trifecta meant it was time for me to go home. I probably could have pushed myself through all of it and made it the end of the day but, I have finally learned that just because I can doesn’t mean I should. In an effort to assure my friends, colleagues and family that I am not the same person who would push until she found herself passed out in the middle of a classroom, I am doing my best to listen to my body and stop while I am still upright. It’s called character growth people. 

Once safely home and laying in my bed I did all the things, checked all my vitals, determined nothing was “off”, and then I sent messages to all my clinics describing my symptoms. This is the actual message I sent two clinics, one to my PCP and one to my cardiac team:

 “Experiencing some symptoms today (Monday) that aren’t necessarily new but the combo is. Having some issues with intermittent chest pain (center of chest), fast beats, lightheadedness, nausea, headache and occasional dry cough. I am holding more water than usual, and my weight is up about 1.5 lbs. I assume this is the culprit, but am hoping to get a once over just to be sure, maybe check enzymes and listen to the ol’ lungs.  I left work early today as it was next to impossible to work and plan on staying home tomorrow. I have not gone to the ER because everything is within manageable levels. My BP is good (100s/60s). My heart rate is steady (70s-80s). My O2 has been 96 or more and I am keeping a close eye on all of it. Just want to double check I’m not ignoring anything I shouldn’t be.”

Does this sound  like someone in distress to you? No way. It sounds like an absolute boss who knows what she is talking about. I heard nothing from anyone that night. To me, this was confirmation that I was probably fine. Talking with MY team (my family) we agreed that everyone would feel better if I was seen before I went back to work. That would be my mission for the next day. 

I woke up feeling better, not great, I wasn’t going to go run a marathon or anything but I was feeling better. By 10 a.m. I still hadn’t heard from any of my clinics so I put in a call to my PCP requesting an appointment. Usually, this isn’t a problem. My PCP and I have a good relationship and she knows that I would rather do just about anything than come see her, so if I am calling she tries to get me in ASAP. After several rounds of back and forth with her nurses (all of whom are new or temps, her regular nurses were reassigned during the pandemic and still haven’t been given back), it was obvious that there were no appointments to be had that day, not even for me. The scheduler gave me an appointment three days away. I figured this meant my doctor wasn’t super worried. I was wrong. About an hour later I got a call from another nurse telling me that she spoke to my doctor. I was so happy, I was certain my doctor hadn’t even been made aware it was me and they were calling to tell me that she said to come in and she would work me in. I was partly right. My doctor had read my note herself and she would like me to go ahead and go to the ER.

She knew I wouldn’t like this option but she told her nurse to tell me that she knew I trusted her and that this was the best thing with my symptoms. She was right. I did not like this option. I did not like that from my perspective, she was afraid to have me in her office now that I am in more advanced heart failure. I did not like feeling as though, despite all my self awareness and charm, I am a bigger liability and charm doesn’t trump liability.  None of this really mattered though, she had already called the ER and told them I would be coming. I briefly thought about not going, there were several issues with this however. First in my mind, if I didn’t go I was not going to get anyone local to check me out in the way I wanted. I needed blood work and someone to check and make sure there wasn’t an abundance of fluid in my chest. Second in my mind, if I didn’t go would it somehow get back to the transplant team when they were trying to determine if I was a compliant patient? I did not want to lose the opportunity to get a transplant because I was being stubborn about going to the ER. I grabbed my things and went to the ER. I did not call anyone to drive me as suggested, after all this was stupid and I can do all things through spite which strengthens me. 

I’ll spare you the details of the check-in and triage though I have thoughts about how both of those could be improved. For one I was given an ECG in a waiting room (yes it had a door) but it was only being done so they could meet the STAT requirements of the test before they sat me in the waiting room for an hour. I understand they are short of staff, I get that they only have as many beds as they have staff for, but they even told me that they were doing the test so they would meet the time requirement even though I would still have to wait. It just seemed dishonest? If you have wait times, you have wait times. Don’t try to fake it. Anyway, I said I would spare you and here I am talking about it. 

An hour after arriving I am given a room, a gown and the nurses (amazing nurses) start attempting an IV and blood draw. I am a notoriously hard stick. I always admit to this. My spiel is “I’m a hard stick, I know it, I don’t hold grudges, go where you have to go and I won’t complain about it.” They always laugh like they think I am exaggerating, and then they are shocked when they cannot stick me the first, second, or third time.  This nurse only tried twice before she called in back up. In her defense my arms are a bruised up mess from failed and successful tries for IVS during the last three weeks of IV iron treatments. The second nurse came in and took his time looking and analyzing. He commented on how beat up my arms were, I agreed. Then he went for a “juicy one” in my inner bicep on my right arm. It was a weird place for an IV but it worked on the first try. I was grateful. 

From the moment the doctor walked in the door I knew this wasn’t going to go well for me. I want to preface this by saying that I do not fault any emergency room, non-specialized doctor, for not having a firm understanding of congenital heart defects or their repairs, or what treatment makes sense for them. What I do have a problem with is when they don’t listen to the words coming out of my mouth, won’t admit they don’t know what to do, or consult someone who can help them better understand. That my friends is what is called a dangerous situation, and on Tuesday for a bit of time I was in a dangerous situation. 

First, I was “too young for an ICD” , never a good sign. “Why haven’t you been seen by our cardiologists in town?”  Another bad sign, I attempt to explain that they are not specialized enough, he tries to tell me their doctors are highly trained. I give up, he is committed to not hearing my words. Then after my x-ray came back he “didn’t understand why they had my leads placed epicardially” when I tried to explain he shrugged me off, and did not care to hear. He tells me everything has come back good, but with my symptoms, they need to schedule a heart cath for me in town the next day. He knows I have one scheduled in Nebraska in a few weeks but I need one now with my symptoms. I attempt again to explain that the reason I am here is because I wanted to make sure I wasn’t ignoring something I shouldn’t be. I walked in knowing my vitals were normal, and that none of these symptoms are out of the ordinary and that if my labs and x-ray are okay, then I am okay. He tells me he wants to make sure that I don’t have a blockage in a coronary artery, I tell him I don’t have acquired heart disease, and my heart failure is due to my great vessels being backwards and having a systemic right ventricle. I also let him know that you can’t just give me a heart catheterization, even my five time board certified cardiologist isn’t giving me my heart cath, he has a pediatric cardiologist coming in to do that because they are more familiar with my anatomy. This barely gave this doctor pause, he told me to get ahold of my clinic and have them call him. He left the room. Leaving the door open…again. This may have been my biggest beef with him. Every time he left he left the door wide open, curtain pulled yes, but the door wide open. Did he forget we are still in a pandemic? Did he miss the part where I am immunocompromised? I was so annoyed. 

To make this very long story shorter, I will get to the punchline. I called my nurse at the heart clinic. She was confused as to how I found myself in the ER in the first place. I explained my PCPs new found gun shyness and her recommendation. She understood that, what she did not understand was how this ER doctor got to the belief that they should be giving me a heart cath. Almost at the same time we said “They are treating you (me) like you have acquired heart disease.” YUP! Within the half hour, not my nurse, not the on call doctor, but MY DOCTOR, was on the phone with the ER doc and told him that he would not be giving me a heart cath, that he had personally looked at all my test results and that he should release me. THANK YOU Dr. Tsai. I was released within the half hour, begrudgingly. 

Straightening My Cape

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Tomorrow it will be two weeks since the news that is heart transplant barreled in to my life and brain with less ceremony than a Mack truck. The first week I was pretty numb, I spent a few days laying in my bed, on my couch, and on the floor of various rooms of my apartment just kind of zoning out. I wasn’t even really thinking about the news. I wasn’t really thinking at all. If my mind was a house, nobody was home. When feelings did come back, they did not take their time. I haven’t had a lot of practice catching grand pianos falling from the sky, which may be why I didn’t handle ALL THE FEELINGS very well when they came, they weren’t light or easy to hold on to. They came fast, zero to sixty, and they couldn’t seem to take turns. Anger, and sadness teamed up and caused the bizarre, dark kind of amusement that makes people laugh at funerals. Then I would think I had pulled myself together only to find myself completely defeated again. I felt more than a little unhinged.

Once the feelings were back the flashbacks and panic attacks arrived as well. It should come as no surprise to anyone, that (largely due to my medical background) I have a long and well documented history of PTSD. The way I have explained it is this – over the last several years of trauma informed therapy I have moved my tolerance for triggers further and further from the edge, it takes larger or more frequent triggers to really cause much of a disturbance. Something may knock me back a little but I am not very close to the edge so my emotions generally stay in check. This doctors appointment punted me back to within striking distance of the edge, and every physical symptom I have started causing tremendous distress and panic.

One night, as I was falling asleep, something about how quickly I was drifting off scared me and I shot awake and into a panic attack because to me it felt too similar to how it feels to drift under anesthetic. I was terrified. I did not want to go to sleep, lose time, wake up confused and in pain. It took me an hour to use my tools and convince myself that I was safe and that I was just going to sleep for the night not having surgery. You would think this is obvious but you would be wrong, you cannot reason with a panicked brain.

Things are improving. I will be moving to twice a week therapy for a while to get these triggers under control. I am communicating my feelings to the best of my ability and giving myself both permission to feel things and permission to take some time off from my hyper-vigilance.

Soon I will have a heart cath, and meet with the Advanced Heart Failure and Transplant team. My team, my mom and sisters will be with me. I am so thankful to have them and that they have worked to understand as much as they can about how I process things and not rush or push. I have done really great changing some eating habits and watching my water intake and retention. There are good things among the hard stuff. I am back at work and for the most part I am able to do what I have always done with a few tweaks and accommodations here and there. I am thankful for the kindness and understanding of my friends and co-workers. I am going to do my best to keep posting here, both for myself and for all of you who wish to follow along. This could be a very long road. I’m straightening my cape. It doesn’t make me super human or anything, but man does it make an outfit pop!

New Path

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Every six months I steady myself. I spend a couple therapy sessions talking about my anxieties and worries about my impending cardiac appointments. We talk about all the ways I feel well and all the ways I want to feel better. We talk about the types of testing that will be done and the various ways I dislike the tests and how I can better tolerate them without resorting to complete dissociation which does no one any good. We talk about what I would like to hear and the things I am worried I will hear. I prepare. I am ready. 

Yesterday was my six month appointment at The University of Nebraska. I have been seen there for the last two years and really like my team. I trust them and their style of care. I feel safe there. Since starting with them I have alternated testing; echos in the winter, stress tests in the summer. Yesterday was the stress test. 

I have a long standing hatred of stress tests. If you’ve never had one let me paint a little picture for you. First, you are hooked to a six lead EKG unit which is fastened to your waist. Then a blood pressure cuff and pulse ox on one arm. At this point you are put in either a treadmill or a stationary bike. Thank goodness I do the bike these days because the treadmill is a level of torture I do not wish to ever experience again. Once mounted on your stationary steed comes the nose clamp preventing you from breathing out your nose and the mask that straps to your face like an unruly octopus with a tube that goes in to your mouth so all of the oxygen you take in and blow out can be measured. It’s a real treat. Then…you pedal while monitored by the nurse and a cardiac specialist. And being the sadists they are, they increase the resistance steadily while you have to maintain speed so data can be collected. This goes on as long as you can stand it, preferably at least 8 minutes, until your heart rate hits 160 and in my case everything including your brain has turned to jello. 

I have been “studying” for this test for a year. I got a stationary bike in my house and I used it as much as I could. I really did poorly on it last year and I was determined to go longer and get better data this year. To be fair, that goal I did achieve. I was able to test for longer and get better data. 

“I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome.”

This is the part that I hope you’re still here for, I don’t want to have this conversation over and over again. I’m not sure I can take it. I want to rip it off like a band-aid and just have it out in the world. I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome. I say that as much for myself as anyone else.

Yesterday, during my appointment, the one I went in to with the good attitude, ready to hear good news, turned on me pretty quickly. I have known for a long time that my heart is not in great shape but I have been hopeful that I could somehow control the situation. Diet or exercise my way out of the natural progression of my defect and it’s repair. That just isn’t how it works. Small issues I’ve been having for months turn out to be indicators of a larger issue. My VO2MAX score was 11. Last year my cardiologist was not comfortable with it being 13. A “normal” 40 year old has a score between 36-41. 

What does all of this mean? Well combined with other smaller issues, increased swelling in my limbs, cramping, tiredness, it means that my heart failure is progressing. It means that my heart is not able to oxygenate my body like it could before. It means that it is time for us to bring in the Advanced Heart Failure and Transplant Team and get them working with me so that when the time comes no one is in a rush and we have time.

It was a blow for sure. It was a shock. And I am dealing with it in waves. I am having moments of extreme commitment to doing all the things right to make sure I am in the best shape I can be when the time comes for whatever is next. I am having moments of angry tears and sadness. I am having all of it and damn it if I’m feeling it all (stupid therapy, stupid “feeling your feelings”). 

So this is the news. This is where I am. I am okay. I have the best support system. Nothing is happening yet. Things will move slowly for a while. I just put my foot on the start of a new path. I just admitted that there was nothing I could have done to change this. I don’t have control of this and goodness do I love control. I want you to know because I don’t need or want pity. I am okay. I am the same person who walked in to that appointment yesterday. I am curiously strong like an Altoid. I may be a little slower these days but I am strong. I will need help and support to stay the course, to watch my salt, to not overload on water, to eat heart healthy, to move as much as my heart will allow. I do not need to be treated like I am fragile, I need to do as much as I can as long as I can. I can do it. I’d like you there with me.

No Safe Place

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Mo Practices Mindfulness and Meditation: A Play in One Act

We open on Mo in her car driving home from her ophthalmology appointment. Mo just learned that at 36 she likely is suffering from glaucoma which is causing a rapidly growing blind spot in her left eye. Mo has had a rough week, she spent Tuesday night in the ER and was admitted to the hospital because of chest pains (she is going to be fine). Feeling as though a melt down or panic attack is imminent Mo decides to listen to the PTSD meditation she downloaded.

Gentle music plays, and a male voice begins to lead Mo through her meditation. Mo giggles a bit when he reminds the listener that recorded meditations are not intended to replace in person therapy because, no shit. Mo breaths as instructed and begins to visualize the safe place the man on the recording asks her to and then…

Meditation Recording: You are relaxing now, you are safe here in this place, in your body…

Mo: What? No, I’m not…ohhhhh shit.

Mo stops the meditation as she pulls to a stop sign.

Mo: Holy shit.

Mo is not used to figuring things like this out on her own. She realizes that the man on the recording is very right about going to therapy for your PTSD, because she probably wouldn’t have figured this out 6 months ago.

Mo: Well, that explains a lot.

Mo realizes that it is weird to talk to yourself in your car and that there is a car behind her. She pulls away from the stop sign and finishes her drive home in silence.

End.

Tonight, I realized I don’t feel safe, even in my own body. I can lock the doors and windows all I want, but the boogeyman is already in the house, the boogeyman is in me. I used to say that it felt like there was a time bomb in my chest and I was always waiting for the beat that would set it off and make it blow, I thought I was over that feeling after my defibrillator fired and I survived it. I guess not. It seems like every time I turn around there is some part of my body betraying my desire to push through and ignore it all. Maybe I need to stop ignoring it, maybe that is the wrong way to approach it. Perhaps I should try embracing it. Ignoring the bully isn’t making it go away so perhaps I have to kill it with kindness.

In therapy we talk about trying to think of all the positive things my heart condition has given to me. Sometimes it is hard to make that list. I feel like it is constantly taking things away, and even if they are things I never wanted in the first place, I wanted to be the one that said so. No one likes being told what they can and can’t have, what they can and can’t do. I am not even sure if these things are actually things I don’t want because without knowing a life without this time bomb hanging above my head, there is no way to know what I would want if it weren’t. I’m in a loop of constant frustration. On one hand I am thankful for this thing that has given me buckets of empathy for others, and perspective that few people have, and on the other I am just so angry that so much of my life’s trajectory is outside my control. And before you get all up in my comments telling me that no one is in control of the trajectory of their life, sure, fine, you’re right, we could all be hit by trucks tomorrow, I get that, but most of you don’t live with a tiny truck inside your body that is constantly (and since day one) wrecking into things and ruining your plans, you just don’t.

So, I don’t feel safe in my own body. Now what? I guess, we all have to stay tuned to find out. 

Circle

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Two months ago I had the wind knocked out of me both literally and figuratively and since then, things haven’t been quite the same. It shouldn’t have been a surprise when after four years living with my ICD (internal cardiac defibrillator) it finally had it’s first go at “thumping” me.

I was on a photo shoot, I was playing with a kid getting him to smile in spite of his instance not to, he was good but I was better. Sure, that smile only came as my physical comedy got more involved but it came and once I had it I was determined to keep it going, my body however had another plan.

Silence. That is what I remember, it was just so quiet. All the noise of cars going by, and the kid laughing at me, and my fellow photographer talking, it all faded to nothing. My vision went from bright white to deep black, and then at once came back with a tremendous thud in my chest. It hurt, it hurt like nothing I’d ever felt before, not the worst pain of my life kind of hurt, but a hurt I had never experienced and couldn’t describe to you accurately if I had unlimited time and words. The best I can come up with is hitting your funny bone, with a sledgehammer, while grabbing hold of an electric fence, while licking a nine-volt battery. It was impact and electricity at once.

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