Fiercely Independent Pam

Tag: Its ok to not be ok!

  • My life as a Plant…

    My biggest hurdle in dealing with my medical issues, is not the pain, constant appointments, or missing answers, but rather the unbelief of others. Whether it is doctors, nurses, friends, family members, or even strangers, it’s so hard to deal with people who believe that there is no way I could have so much wrong with me. It eats me to my core. I know I have to deal with these feelings and I need to let people have their own feelings, but it’s not easy.

    I can handle the medical procedures, medications, and pain. I boost myself up and put on a smile along with my crazy curls and deal with what has been handed to me. I believe that it is not to hurt me, but rather teach me and help me be stronger for myself and others. I shut down and wilt when others don’t believe or think they can solve all my issues.

    Lately, my wilting and shut downs do not portray my best-self. I get upset, cry, and become very anxious. This cycle just keeps me in a place that I do not enjoy, nor does anyone around me. I will continue to work on this but it’s so important and easy to be believed. To the medical world, do your homework, my issues, while mostly invisible, are still very much real. Things like shunts, surgeries, and medications do not happen without having proven needs that are not arbitrary, but reality for myself and thousands of others. To my friends and family, it sucks that I am not reliable anymore and that I need help. Please always tell me if I am asking too much or you are not able to help. I promise it will not change our relationship. Ghosting me or not explaining the distance, hurts and will impact our relationship, which I hope neither of us wants. To strangers that feel they need to comment, I will simply let you believe what you want, your comments sting, but frankly, I don’t have the energy to fight for a non-existent relationship.

    All of this might seem a little cold or not like me, but it’s self-preservation at this point. I’ve chosen to subscribe to the “Let Them Theory”, in which I recognize that I cannot force or make anyone do anything, only people can change if they want to. It has been a freeing practice, and has helped me not to stress about relationships.

    For now, I will recognize that my body does not look like a temple, but that doesn’t mean I don’t want to treat it that way. I really am the lost plant on clearance begging for a little water, sun, and love. I will push through the ugly soil, but just need to believed that it is possible. My scars and experiences tell a story that I am proud of.

  • The need for trust in the medical world…

    Another week, another admission this time I ended up in the ICU directly from the ER. My once super low blood pressure, is now insanely high, some from unknown causes, and a little from the stress and anxiety these providers have caused that could be simply avoided by talking to me and asking me questions.

    Assumptions in health care are so scary that unless you are on top of things, misinformation can get carried into your medical chart and that is a Herculean task to have amended or changed in your chart. Filing a grievance sounds right, but that too doesn’t get handled well, and you only end up with a stupid form letter to say that an investigation was done, changes were made, if necessary, and internal actions “may have been taken.”Not what you want to hear after putting your total heart and soul into your concerns at the time- all while dealing with your current brand of sickness.

    Medical trauma is real. When a bad situation repeats itself or you feel you are being gaslighted and begin to feel “crazy”, it’s not ever your finest moment(s). I tend to get loud and teary. Apparently this is something that needs to be not happening around others. I clearly mean no hard, but I struggle to put my words together, thus creating more stress on me, more anxiety, and the cycle continues until total breakdown, and now you are the looking and sounding like the crazy one, not the provider who started it. My biggest trigger is when a brand new provider believes they know and understand my medical history based off of oral report of the previous provider, or the written report that is often inaccurate, or just assumptions.

    Secondly, is when a new provider begins to unravel your medical history by distrusting what other providers (mostly specialists who have spent months or years creating said plan, treatment. medication). Please trust your patient, she knows that most about the symptoms, home meds, and history, especially whats not mentioned in these reports. Once this trigger is let loose within me it seems like nothing can put it out except finding a way to find an ounce of truth and faith in someone and pray that continues. Everything else gets blocked out, even new good stuff. This is really hard to do and I lose my dignity and end up losing people who were cheering me on because they don’t understand why I get so upset. I simply want to be kept in the loop about what is happening, offer my input about my personal history, and overall, be BELIEVED!

    This is a lesson I really need to master, my reactions are uncontrollable and getting worse at this point. I look forward to working with my therapist to help moving forward. Getting upset in a way that makes you look even “crazier” doesn’t help when you are trying to be believed. Unfortunately, providers don’t remember medical details about you, but rather the way they were treated and your clinical presentation . I strongly believe that providers should not be exposed to abuse and deserve respect, but sometimes that respect comes in the form of, I respect you so much, I’m showing you my vulnerabilities so you can help me. Crying for help is oftn seen as a weakness or being disrespectful, we need to normalize anxiety and stress responses and recognize they are signs of needing not just medical information, but support.

    I did something different today in the height of my “emotional diarrhea” I stopped and asked for my emergency anxiety meds. I made the decision, it was not asked of me, or recommended. Why can’t providers who know you have a long standing diagnosis of anxiety offer help instead of ignoring or just repeating, “you need to calm down- because that does nothing!” The best providers, look into this and provide support that actually helps and builds the broken trust. I am not a “pill popper” when things get rocky, but I sometimes need the chemical impact of something when I am past the point of no return. I am not ashamed for asking for my meds and wish someone would have asked me if I wanted them earlier. It is time that we normalize getting help from many different corners from are health care providers. This is different than writing a random script of meds and tell a patient, “This could help, get it filled any take it. This is about changing the culture and acceptance of the normalcy of needing to getting help. Instead of saying, “Where are your anxiety meds- you should take a dose,” Asking about what srategies the patient may want to try right then, right now! Then introduce the idea of meds. Patients should never feel bad about taking something, but rather encoraged that they are finding a new tool for their toolbox to help with the situation. When a patient utilizes a tool, even/especially asking for anxiety meds, applaud them and support their decision.

    Also, this doesn’t even scratch the surface of your medical history not being believed, in the sense of, “there is no way you have all this wrong with you.” or “but you don’t look that sick, or are you sure you really have this disease/ problem? A good example of this is the never ending oxygen question. Good meaning providers say things like your stats are great, why are you on oxygen” let’s take you off and see what happens( or worse they play “games” and try to discreetly turn off my oxygen just to prove for the 20 minuets it usually takes for me to notice, I was okay.) Two things automatically put in panic mode- you are not the specialist that prescribed and continues to provide documentation of the need and you are correct, right now I look like I might not need it, but you are not seeing me at a time, when it is my very lifeline. Trust me if I could get rid of it, I would be first in line. I always seem to get so close to turning the switch, but then an infection, trigger, or bad day gets in the way. The second is being called out on poly-pharmacy (essentially having conflicting medications or being told that some of your medications are not necessary. I do not like/want to take as many medications as I do. I hate it actually. I also have a lot of medication allergies or conflicts with certain, more mainstream meds. The creation of a medication list and regiment is constantly evolving and improving but a 3 day hospital stay in not the time to have hospitalist who meets you for less than 15 minutes or a couple of days to be making the changes or telling you the conflicts are the only thing wrong with you.

    Trust is such an important element in the medical world. Providers need to meet their patients where they are in this continuum of ability to trust their providers, especially when the patient makes known their past medical trauma and trust issues. When a calm, outgoing, pleasant patient, suddenly changes and is flying off the handle and falling apart. The correct answer from the provider is not to escalate the issue, but find a way to tap in to whatever he/she is able to do to reintroduce trust. Providers always need to leave just enough space for the patient to find and react to the nugget of trust created by the provider so that trust level can grow.

    This can look many ways, but should never look or sound like a threat or saying you need to calm down. Build and rebuild the trust each time you meet, but especially in these moments of possible hysteria or uncontrolled anxiety and please, treat the anxiety as a real medical situation, offering real solutions such as breathing techniques, supportive questions or thoughts that help change cognitive thought patterns. Overall, validate the patient’s feelings, behaviors, and thoughts, as exactly what they are, REAL!

    Providers, be the change! Be the person who shows up for a person dealing with new or old medical trauma and shows signs of anxiety from it. Applaud successful mindset changes or choices to help make it difficult to navigate through the chaos. Gently offer suggestions and above all else, DO NO HARM! Harm may look like telling someone to simply calm down, embarrassing a patient by telling them they are being ridiculous and out of line, treat the symptoms of panic and anxiety with love, support, your expertise, and most importantly with time! The last thing I want to hear in the midst of a medical trauma being developed, “Is I’m quite busy and/or there are other patients other than you! I promise you, we are painfully aware that you, as a provider are already stretched too thin, but please know taking even 30 seconds to meet your patient’s emotional trauma will lead you to a much better encounter or appointment. By the way, nurses are amazing at this!

  • Till our next adventures my friend (ten years ago)…

    I have a love/hate relationship with Facebook Memories. Each morning, I usually check to see what memories are posted for the day. Usually they are filled with events that I barely remember: a crazy day at school (those happened a lot as a principal!), silly quotes, weather updates, etc. Other times, they are reminders of amazing times I spent with friends or family, and sometimes they are memories that sting a little. Things like reminders of days spent with wonderful people that have left this earth, hard days spent at work, medical happenings, or events that changed the world, all leave me with some pain. I was up early this morning and checked my memories and realized ten years ago, I escaped and made one of the biggest changes in my life.

    In 2010, my (the) school, where I not only learned what it meant to be an adult, but where I learned to love a community was closed forever. A decision that was out of my hands and control. This event shook me to my core. At the time, I thought that personally, I was doing ok- I landed heads up in another school as principal, my colleagues were finding employment opportunities, “my kids(students)” and their families were finding other schools as well. Change after all is hard, but not impossible. Little did I realize that this change began chipping my foundation, confidence, and all that I believed about my faith, my personal strength, my vocation, and my support system.

    Years 1-3 at the new school were a blur of emergencies, great people, curriculum work, and amazing events. I truly was becoming an agent of change- for better or worse. I made mistakes along the way, but I truly felt like we were “rocking and rolling.” It was hard work, but I was never afraid to get dirty and jump into a mess in order to clean it up. The hours were long, sometimes 60-80 a week, especially when you included work at home and the work was frustrating and lacking support. Looking back, I was in an impossible situation. At the same time changes at home were happening too. My stable housing situation broke apart. My housemate of the past 10 years moved back to her hometown and other friends were getting married and having kids. In someways, me- the change agent, didn’t see the impact of these changes and felt blindsided.

    Years 4-5 were lonely, it felt at times like it was “me against the world.” Sure, I had amazing friends who showed up at the ER at 3 in morning if I needed them, and there was wonderful family visits, and births of nieces and nephews, but most of the time it was me, alone with my doubts and anxiety that tore my chipping foundation, confidence, faith, vocation, and support system into shreds. The harder it got, the more I withdrew and began a cycle that I couldn’t control. I let troublesome thoughts invade my head, my chronic overthinking became the norm, and I was completely out of sync with myself. Looking back, there were signs- I wasn’t eating right, I clung to things I could control like my new habit of running and became almost obsessed with these things, I stopped seeing friends and family. I pretended that everything was all right and convinced others and myself that I was ok too. Things were NOT ok- tasks at work weren’t getting done, relationships were a mess, and stopped reaching out to my support system. I was rapidly coming apart at the seams and the more that happened, the worse it got. I made a living hiding from everything that was happening, I ran more, slept more, and began behaviors that I didn’t recognize in myself, including self-harm.

    My feelings, weren’t my own- I was numb and totally disconnected with anything that looked like my life and then I hit what was rock bottom. I thought I was pulling myself together as I began making plans, but really these plans were dark, scary. and oh so private. Questions like, how many pills of this prescription did I have and what will I tell people happened to my leg, arm, or God-forbid they see my stomach (these were always dumb answers), and would anyone notice if I wasn’t around became the norm- sometimes being the only thoughts I had. The more I welcomed these thoughts, the less I accomplished at school or home, phone calls to friends and family stopped. I knew something had to happen, but totally numbness took over.

    It was a cold night in November and I remember that I couldn’t stop or control the feelings and thoughts, I couldn’t or wouldn’t reach out to anyone, after all these were my problems and I was supposed to be able to solve them. In a rare moment of clarity, despite the raging anxiety attack, I drove myself to the ER and presented with my physical symptoms. I was treated and almost released, when I took a chance- I told the provider that I was feeling unsafe and thought I could no longer control my actions. I showed him my physical scars and injuries and shared some of my deepest thoughts; by the grace of God, he listened to me and believed me.

    What happened next was a giant blur or losing complete control- the “strip” search, the phone call to my brother, losing my always connected, always on cell phone, the constant supervision, and mostly the tears. I had never felt more alone before. Then it happened- admission at a mental health hospital. I can barely remember the first couple of days, but I was so numb that I didn’t even or couldn’t even call into work. I stayed awake for over 48 hours pacing the halls, room, and barely talking to anyone. The days eventually became night and sleep eventually happened. The days, with A LOT of work became brighter, and I met some amazing people, who like me, were clinging to anything and everything that helped make sense of their current situation.

    The medical providers desperately tried to get me to believe that I was more than my failures. Some days I believed it and others not so much! We made a plan for discharge- back to my apartment, back to being alone with my thoughts, back to school, after all in was only a couple of weeks until Christmas break. The hardest pill to swallow was the conversation with my bosses: the superintendent and Pastor, both of which, were kind, understanding, and Christ like to me during this time. I reached out to friends to help prepare me for my new normal. There were plans: for my meds and keeping only enough on hand, for sharps, and for emergencies. I now clung to these plans. I planned for every minute of my days and nights, as long as it was planned for, I could handle it.

    Unfortunately, being a school principal doesn’t allow for only as planned action and activities. Despite the intense therapy, medications and support, I quickly became overwhelmed again and ended up back as a patient in the hospital. This second admission was longer, deeper, harder, and is where I made two important decisions- that I would not be returning to school, and that I needed to make a major change in my living situation. My friends and family that were aware of what was going on, were incredible- it killed me not to tell others what had happened and what was going to happen, but I, for the first time ever, was placing my needs before others- and to those of you that I left in the dark, I am sorry.

    With love and support, I made the decision to move in with my brother, John in Myrtle Beach. I had no idea what I was going to do, but I knew that he and his kids would keep me busy as well as my continued treatment. I believed that I would never see the inside of a school again. I, for the first time in my adult life, believed that I would never step foot in a church again and stopped so many aspects of my life. My world was so small and fragile. Then, in a moment of chaos with my sisters in town, I received a bizarre voicemail from a Pastor in the area asking if I had any interest in applying for a principal position in a nearby Catholic School. “Spoiler Alert”… I landed the position and fell in love with a little school, great parish, and rediscovered my faith, confidence, and met some super people along the way! Unfortunately, this story didn’t end as planned and my health got it the way more times than I can count. But that too, is documented in Facebook memories!