1. Last year on my one-year stroke anniversary, I took the day off because I anticipated feeling emotionally distraught. I was surprised that I did not feel anything that day. I sighed with relief that I was stable enough to move forward. I was utterly wrong. The next day when I woke up, I was shocked to find myself depressed followed by tears. I never anticipated that I was going to have a delayed reaction. Confused by all this, to date I do not understand which bothers me. To be honest, it shouldn’t. So, for those coming up on your one-year stroke anniversary, do not prep for how you are going to feel because that anticipation may not come until a day, week or month later. The good news, after sobbing, I felt euphoric that I was alive. It is a mind game; however, our minds were assaulted.
Lesson learned: I will not prep each year for sorrow. I will prepare each anniversary with happiness and appreciation. If I cry, they will be tears of happiness. I was given another chance not once but twice and I can assist others who are experiencing the gritty part of surviving a brain aneurysm and stroke. My fight has also expanded to trauma in general. I realized that despite what happened to me, I have a purpose and it is not selfish.
2. After my one-year mark, I wanted to author a book about my journey. I had everything outlined going through the raw emotional and physical pain of survivors and how to tackle those hurdles. I thought one-year under my belt, I had everything figured out. I was completely wrong. This is a lengthy process, and I am still learning a lot about myself post-stroke. There were so many events that popped up that I told myself to pause.
Lesson Learned: I will author a book about my emotional journey, but I still have a long way to go before I can do it justice for new survivors or survivors that are curious of another person’s journey. Again, it will not be a sugarcoated book that glosses over everything. I want to be my authentic raw self so people understand that the dark side can turn into light.
3. Next was my angiogram checkup to make sure my clip is stable and there are no more vessels bulging. I thought this was an easy task. Call to set the appointment up, get the COVID test and show up for the procedure. It was not a painless process. Two days before my appointment, the hospital called and asked for my full out-of-pocket max paid before the procedure which exceeded over $6,000. I was in complete shock that someone thought I could whip out over $6,000 on the fly. I was angry that this was conveyed to me two days prior to my procedure. Despite my anger, I knew I had problem solving to do. Starting off on the wrong foot would not get me anywhere. I called my insurance company and they told me that they could not ask for that money up front and would need to file a claim per usual. I called the hospital back and let them know and they asked for my insurance company phone number. Less than 5 minutes the hospital called me back and said I still needed to pay the out-of-pocked max. So, I told them that they can go ahead and cancel my appointment and I will get an angiogram if I have another rupture. That bold statement worked because the billing department said they would talk to their manager. Within minutes I received a call that I could put a small down payment that was feasible and work out payment arrangements. Sadly, I could not do the angiogram when I wanted because the billing hassle. I was rescheduled another date.
Lesson Learned: The healthcare industry is feeling a crunch with payments from Medicare, private insurance, and patient deductibles. They are instructed to ask for full payment hoping there is someone out there that can make a payment. They are instructed to play hardball with you to make you feel like you do not have many options. The truth is-you do. I knew the game from working in the healthcare business for so long, so I played my cards right. This is something I will tackle in another blog about “Patient Rights” because I think there might be a group out there that believe what the billing department states is the bottom line.
4. The day of my angiogram, I was anxious because I did not know what to expect. A part of me thought that with stress building up, there was a vessel waiting to rupture. I also have PTSD from all the angiograms in the NSICU. I was prepped, given IV medication to help relax me and suddenly the screen that was critical for the neurosurgeon went out. I had to wait thirty minutes while they continued to pump me full of medication waiting for a technician to come to the room. The eventual answer was the screen is broken. I was hauled off to another room. By that time, I had enough medication in me that I did not care. Once it was over, my femoral artery would not stop bleeding, so I had a nurse sit with me for an hour while she placed pressure on it. My neurosurgeon did her usual, I have good news and bad news bit. The good news was my clip was in place and my vessels looked good. The bad news, she was leaving for a position in D.C. I cried that she was leaving because we formed a wonderful bond. After she walked out a migraine came on and lasted several hours I was released. I came home and had an icepack on my head, took migraine medication and wished for it all to be over.
Lesson Learned: Do not go into your angiogram with a lot of expectations. Go with the flow and be appreciative of the people who are there to save your life. Things happen, it can be scary but, in the end, it is a service to protect you. If you have a neurosurgeon that you love, make sure you let them know how much you appreciate them. They work long hours and work surgical magic with meticulous work.
5. Things began to run smoothly in my life for a bit, but I felt this nagging sense of hopelessness and sadness. I thought about my emotions and the wheel of medical trauma that does not stop. It will be quiet one day and then loud others. For reasons unknown to me, March invited an intense wave. I could opt for the easy scapegoat and call it the COVID blues, but the truth, COVID did not impact my area to the point of depression. Then I leaped to political upheaval, work stress, you name it. Thankful, we had another trip planned to Arizona. It was the excitement that got me through the remaining part of March and first couple of weeks of April. Last October we went there, my spirits raise. A calmness overtook me, and all my worries went out the door. It was the first state that I have visited where I felt a connection. So, going back to Arizona was just what I needed to regroup, and it did not disappoint me. When we went on a hike, all the negative energy left me. We went to different food places, looked around stores. I did not want to leave because that is twice that I have been there and felt like a Zen version of myself. I asked my husband if he would consider moving out here and he said out of all the places I have suggested, he would consider this. Alas, I could not handle being away from my parents nor my husband’s. The allure of Arizona is that it is an escape. If it were home, it would lose its special touch. One we arrived home I had a couple more weeks before the waves began crashing again.
Lesson Learned: When things become too much, it is good to find an escape. It does not necessarily need to be out of state, but whatever you can make out of it. For me, I cannot hop on a plane for every roller-coaster dip. I had to form other versions of an escape. When it is warm out, it is a bit easier to go outdoors and walk around and enjoy everything around you. I love to get lost in writing. There is so much that I write, but it is more of a dear diary format. I have TV shows that I know make me laugh that I can turn on to escape and of course there is my every present husband that make me laugh. So, overall, when stuck plan a healthy plan to escape for a bit.
6. After waves crashing all around me, I noticed my PTSD was coming back strong and coming during the day. I would walk past the bathroom and a flash of myself on the floor would hit. I walked down the stairs and a flash of me trying my best to get down those stairs to save the paramedics time hit. I opened the door on a summer day, and for some reason I felt frigid air blast like the night of my event. When I hear sirens go off, my heart races because it reminds me of the sounds of the ambulance arriving at my house. Most of my PTSD prior happened in my dreams. Now they were entering during the day and in my sleep. I could not escape it. I talked to my medical professional about it, and he assured me that this was normal for trauma survivors. There is not a magic pill to cure PTSD but there are combination medications war vets take to assist them. He gave me a prescription, but I was told my blood pressure could drop. With that caveat, I rethought my decision to take the medication when I picked it up. I asked myself, how many drugs does it take to get through this. I am already on a lot of medication to prevent seizures and other medical problems. I thought this could be something that I face on and say you have no control over me. It did not work at first but eventually the PTSD dwindled down. Will it come back? Yes, it will. Will I know what to do? Yes, I will.
Lesson learned: PTSD is different from person to person, so I do not want to speak on other experiences. For me, I learned to accept that this is a part of me and there will be triggers. Some of the triggers I cannot avoid, however I know to say, “go ahead and hit me.” Basically, rip off the Band-Aid.
7. After my PTSD, I began riding the waves again. Sometimes it would be small, large or if I were lucky the water was still. I kicked myself because I overcame trauma, beat a lot of odds and I am still alive. Why was this still taking up space on an emotional level. Again, it goes back to that grief cycle I brought up. It never disappears and you move on skipping in a field of flowers. There were outside factors that enhanced my feelings from finances, work stress, people bickering etc. I did not handle the big waves well. Sometimes I kept it to myself, so I did not make people worried or upset. Then there were times where my attitude shifted in a negative direction, and it was palpable. The smaller waves, I would sniffle a bit, or just yell out a cussword and get it out. When the water was still, I did not enjoy it because I sabotaged it with anticipating the worst. I felt this funk would not lift, and it was not feasible for me to continue on this trajectory. I needed to do a self-assessment of my overall mental health. I made a list of about my life dividing it into good vs bad. I decided this initial list would not be my overall assessment. Each day, I would note what went well and what went bad. If it was bad, I noted how long the feeling lasted. After this exercise for about a month, I looked it over and noticed that I had several highs than lows. The lows that I experienced were situational and did not last long. Having visibility helped me make a connection in my head that bad moments do not have the power to hang over my head that scream everything is bad. I continued this exercise until it became natural however given unforeseen circumstances, I am going to pick this exercise back up.
Lesson Learned: Emotions for an average person range from good to bad, however the average person typically can discern that a bad moment or day is not going to dictate their mood the following day. For someone with medical trauma, it can sway the opposite direction. I gather that it is due to the yearning for a win and when something goes wrong, that win did not mean anything. It took a lot of self-awareness and accountability to recognize that I was the portion that let a tough situation knock every win over. So, when my mood shifts to negative for more than three days, I will practice the exercise that I produced because I know it works. The more it is placed in practice, the mind will naturally sort it out, but when things fall apart, I know what I need to do. I am pleased that I did this exercise because it made me feel proud rather than curling up in the fetal position.
8. The large piece of this year surrounded the lack of mental health care specifically for medical trauma survivors. Last year I chalked it up to shutdowns but when life slowly began to get back so semi-normal, I did not see much movement. I go on forums; I have heard from people and their large hurdles with emotional baggage weighing them down. I did a video blog a while back going over my comprehensive stroke book the hospital gave me when I was discharged. It was full of helpful information however there was one paragraph devoted to mental health which was an afterthought that you might go through depression. Wow, I have pages about eating healthier foods, which does not go with my stroke. Which, they need to make a stroke between ischemic versus hemorrhagic. Once you get towards the back of the book there are support groups to attend for help. When I had mine, the support groups were cancelled during the shutdown so that was out the door. That did not bother me as much. Back to the content of the book, I scratched my head wondering how the hospital came up with a committee of people to help contribute to this comprehensive book. I wonder if a mental health professional was consulted to add input. Also, when you have gone through trauma, more than likely you want that 1:1 time with someone to work things out privately and then mix it with group support. Some may argue with me that it should be obvious that seeking professional help is a given. Yes, it is understood, however a lot of people do not understand the waves of emotions they are going through. They may be feeling high on life and then it crashes. Some might be in denial or others do not want to burden loved ones by admission that they need help. Finally, the stigma of mental health. My personal experience, I am an open book, so I decided that while I am stuck playing therapist for myself, I would share everything. I did not want anyone to feel alone. I began to write a comprehensive book to share with the two states I live next too, and appeal that anyone who has experienced trauma, should have a team dedicated to assist them, and that if there are books distributed, more information needs to be contained about mental health. I realize I cannot force people to seek help, and there is a group that is doing well by practicing healthy mindfulness. My fight is for the other half. A lifeline that they can reach for if they are feeling down and understand it is normal with the caveat that if it falls below a threshold, then professional help is needed as soon as possible.
Lesson learned: This will be an ongoing battle for me to change mental health for trauma patients. I will continue to push the boundaries as much as possible. I will continue to share my journey with the hope that it resonates with someone. This has become my sole platform and I will not rest until I see change.
9.Tragedy will still come......
Lesson learned: This is will be a subject for another blog because it is something that punched me in the gut. I am still struggling and, I am still on a waiting list for mental help.
To summarize 2020 vs 2021, it is interesting.
2020: Learning phase
In 2020, I was a rookie with my ruptured aneurysm, SAH stroke and hydrocephalus. I did not foresee at my age that I would endure. At most, I figured I would have broken my leg or and a suspicious mole from the sun. Sitting in the NSICU for a long time, I knew that I had to share this experience or at least remember every part of it. My phone is filled with notes I wrote each day. I also noted on my calendar each day in the hospital how I felt or what happened that day so I would not forget. Once I was finished with all the surgeries, I was perplexed to the point of insanity. I was also mad that I would not be alive today if I did not scream get me a CT scan. The pandemic offered little to do during the lockdowns. What does someone do that is analytical? I began to research and keep a diary on my phone. The beginning stages, I had a hard time typing on a keyboard on my laptop. After practice, alas, my website was born. It was necessary after joining stroke several groups online and seeing the amount of people confused for their loved one or themselves. With my website I didn’t know how many people it would reach, but it is historical record for anyone to come across.
2020 was filled with research, frustration, and learning as I went. Eventually it picked up traction and I was connected to wonderful people that inspire me to this day.
2021: Figuring it out
In 2021, I quickly got a hard crash that the learning phase is not over, but I am wiser to the situation than the previous year. 2021 was spent taking all the pitfalls and spinning it into a positive and realizing that my stroke does not define me, but it is a piece of me. This is especially important to remember. You can still advocate, share progress, but you are a unique individual who has a lot to offer the world. The trauma was a part of the human experience, but it is not our mold. So, while I was scrambling to save the world in 2020, I took more of a holistic approach in 2021. I also learned to balance my life between my husband, family, friends, work, and the stroke world. I had to let go of being consumed because I am blessed to be alive, and each day that I wake up, I need to do something healthy for myself. Yet, also forgive myself if I wake up and feel like impending doom.
For 2022, I will continue to expand on my approach from 2021, with more knowledge and outreach. I want to contribute as much as I can to other foundations raising money and awareness for grant money. My hope is that brain aneurysm awareness month or stroke awareness month, contains more substance behind to give it shock value for people to stop and think about life choices or trace family history. What to look for and know that time is against you for the moment it happens. Whether that be in commercials or plastered all over social media.
Right now, I have family trauma that has sucked most of the life out of me in the moment, it is hard to fathom what more I can do or the willpower to do it. I remind myself that I do not give up despite the painful obstacles. I keep my mom’s words in the back of my head that she is proud of all the work I have done. I will not let her down, more importantly, myself. Down the line I would like to start a foundation of my own that is specific to mental health for medical trauma survivors and loved one.
I promise, I will not stop until my last breath. I am stern, objective motivated but I have a massive heart.