Technically June 28th marks my six months post-stroke period, but I feel like I have enough intel to post my journey. I what to do this blog with a different approach with Q&A so it’s easier to follow. Hopefully these answers will help you understand or assist you.
Question: Are you angry that you had a stroke?
Answer: No! While I don’t wish any medical trauma on myself or others, I count this as a blessing. I’ve done some self-reflection and believe that I went through life with a veil over my eyes for many years and after my stroke that veil was pulled back to look at life with a different appreciation, perspective, empathy and sympathy. I admit I go back and forth with anger, but the life lessons outweigh the negative. I feel like I have a calling now to assist others with issues related to stroke, brain aneurysms, hydrocephalus, medical trauma and most importantly my type of stroke, Subarachnoid hemorrhage, which is deadly.
Question: Did you think after you first surgery you were out of the woods?
Answers: Yes. I spent 19 days in ICU after my craniotomy clipping procedure. When I left the hospital, I felt immense pain and exhibited weakness, however I had this false sense that I was finally out of the woods and on my way to recovery. I remember my neurosurgeon told me there was a possible risk of acquired hydrocephalus, but I brushed it off like those medication commercials that state “may cause” statements. To be honest, I didn’t understand what hydrocephalus really was other than congenital. I did fair the first couple weeks, bought some new wigs to cover my baldness and large scare. I enjoyed laying on the sofa with my husband and two fur babies. I thought my life was going in right direction with a greater degree. After a couple weeks, my mother noticed a decline with the speed of my voice, sleeping more, and not responding. It was hard to differentiate if it was the medication, or something else. One morning I fell getting up and went in for a CT scan. The results showed I had significant fluid in my head. After hearing this, everything made sense that my mother noticed. My neurosurgeon happened to be on her way out and stopped by to explain that I had acquired hydrocephalus and needed an operation the next day to place a ventriculoperitoneal (VP) shunt. This is a non-invasive surgery; however, it was by far the worst surgery I’ve ever had. I’m comparing this to the 11-hour craniotomy. My recovery from this surgery took a long time, and I believe I cried more than ever in the hospital even when I was leaving. On the other hand, I will state, a day after surgery, my mind was sharp, I was speaking fast, and I could tell a vast difference that the shunt was working.
Question: What was recovery time like?
Answer: After my first surgery, I spent a lot of time resting and watching TV. Sadly, this was a time that COVID-19 was entering our country and our news was persistent. My husband had to work, so my mom was my full-time babysitter. We were both consumed watching the news and press-conferences. After that became too much, I started doing research about the type of stroke I had because it wasn’t clicking with how lucky I was that I was the 1/3 that came without neuro-deficits or died. After my second surgery and I felt healed enough, I knew I had to keep my brain working with problem solving, writing and doing tasks. I knew that if I allowed myself to become stagnant and sleep all the time, I would fall in a deep depression. I’ve posted what I did to keep my mind working in a previous blog, but to recap, I did the following: learned a new language, learned calligraphy, did needlepoint to for hand coordination, read medical books, researched stroke information, crossword puzzles, brain games, started this blog, started a fashion styling service. My advice to anyone in this position is to keep your mind healthy and strong by any means possible. I believe that jumping into these activities helped me recover quickly. Finally, if you are lucky, it’s good to have someone with you. My mom came over every single day and we talked and watched shows together. The two of us have a good relationship and I always called her on my way home from work, but I never had time to go over and visit. This allowed us to physically be in the same room and have conversations. That’s another key to recovery, is talking to someone. Your recovery time chiefly depends on how you approach it.
Question: What emotions did you experience in 6 months?
Answer: I experienced every emotion possible. After my first surgery, I was so happy and felt like a new person. I told everyone that I lost my edge of being high-strung and felt like the new me was going to be more relaxed (more on that with the return to work). I think after my second surgery the grief started to set in and I became an emotional mess. I cried every single day, wished that I would’ve died, depressed, felt angry that this happened to me. It was all the stages of grief. Thankfully I recognized this emotional experience was not healthy. I began to tell myself, this shall pass, but allowed the emotion to come out, learn from it and build tools to help to assist me the next time those emotions come back because the reality is, it will always come back. Medical trauma is not an emotional process that dissipates- it will hit you at any moment. The key to surviving these emotions, as stated before, is to allow yourself to go through the emotions, acknowledge that it will pass, and once you have mastered this, you will become stronger to handle them the next time it hits. The other part that I’ve never touched on is how your loved one's emotions play into yours. I remember my husband was super worried and wasn’t handling it well. His inability to process this, fed into my frustration too. After a nervous breakdown, we talked about our emotions and it made us stronger. My parents did not express too much emotion at the hospital because they have medical backgrounds, so they were in medical mode for their daughter making sure they understood what was going on and to give me assurance. Once they knew that I was out of the woods, the emotions came out. Now when we reflect with what transpired we cry, because we know how lucky I was. I still have a long way to go, but 6 months out, I will say I feel more the emotionally stable and in control.
Question: When did you feel ready to go back to work and how has it been?
Answer: I felt the itch to go back to work toward the beginning of April, but I knew I needed more time to recover. I was cleared mid-April to return. My first day back, I felt happy and engaged like I never left. As the days went on, I suddenly felt stroke fatigue that several stroke survivors talked about. After the day was over, I immediately took a nap (and continue to do so) for a couple hours. Most of my night is lost because after my nap, I have a two-hour window before I need to go back to sleep and the it’s work again. Another issue I faced was giving input. I missed out on a project of revamping guidelines, and I knew that it wasn’t my project or anything I could cosign to. This is not something my company made me feel- it was my own insecurity. I wondered when evaluations come around, what do I even say? There were moments when the “relaxed Wendy” that I promised everyone switched over to high-strung and frustrated because I realized I missed a lot. Some things I forgot, or new processes were introduced. I admit, it was a weird adjustment period, but things began to fall in place as the days went on, and I must stress that I feel supported by my colleagues and leaders. There are so many things that I want to suggest, or revamp that I thought of during my time away and I hope that I get the chance to share these ideas. With COVID-19, we are all working from home, and I miss seeing the faces of my colleagues, however I’m happy that with my struggle to walk distances, I don’t have to track the long parking lot or be over stimulated with the amount of people which is hard for me right now. It’s nice to get up, take a shower and immediately start working in the comfort of my home. Overall, the transition back to work has been a good experience, and I’m happy that I’m able to contribute once again. I’m also thankful that I work for a company that allowed me the time to heal. Not a lot of companies out there are understanding.
Question: How has your body changed in this time period?
Answer: Initially, I couldn’t walk anywhere but the confines of my apartment. I was supposed to start physical therapy in March, but COVID-19 delayed it to May. While waiting, my husband and I would go on walks when it was warm enough. I would do great walking and then suddenly start walking like I was drunk. I noticed that I had trouble opening packages and I was quickly fatigue with a lot of movement. I began to have body dysmorphia and weight anxiety because I was not active. This was a slippery slope for me because I suffered from anorexia in 2008 that led me to be hospitalized because my weight was nearing 79 pounds. I never had a life-long issue with weight, but I went through something traumatic in 2008 that forced me to find a way to control my life. I worked out like crazy, and eventually it led me to skipping meals. I overcame this in 2009 when I met my husband and it’s never come back until after the stroke. Additional background, two years ago I was hospitalized several times for fainting. My cardiologist ran a tilt table test and found that I had POTs syndrome and autonomic nervous system dysfunction. This caused my healthy weight to plummet quick because my body was in overdrive. I had to purchase a whole new wardrobe to fit my small frame. So, after my stroke and being sedentary, I went to my appointments, my weight was starting to climb up. Instead of being happy that my weight was starting to stabilize, I was freaking out that I was getting fat. I was an emotional mess and there was nothing I could do because I was limited with working out. I would try on my clothes crying to make sure they fit. Of course, they still fit, but the dark seed was planted in my head that the weight gain would not stop. I was even convinced that I had a VP malfunction that was causing this because I was always bloated around the incision area of where the tube ends. I was doing so well, and I didn’t want to go back to this dark place. I told myself that I need to focus my attention to healing and not weight. Finally, as COVID-19 restrictions began to ease, my physical therapy facility called to make appointments. I was elated to begin strength training and get some exercise. My first PT was terrible. I didn’t realize how bad I was with balance. After my second PT appointment, my physical therapist said that they were going to add 10 more sessions in addition to my existing sessions. I knew that was not good, because that signaled to me that I was in bad shape. So, after I made my appointments, I began to have that tenacity that I speak of trying hard and prepping like I’m getting ready for a fight. So little by little I began to gain more strength. Since I suffered from massive stroke fatigue, I admit it was hard to do the exercises they gave me to do at home. I think if I had done the exercises; I would be farther along than I am right now. So, for anyone that is given exercises- do them! I’m still not at the point that I can walk very far without teetering around, I’m hopeful by the end of July I will be set. My last PT visit was cancelled because my BP was too low. I don’t know why, probably due to lack of water intake and being very busy with work. They wouldn’t let me do my session or leave until they felt I was ok to drive. So, second lesson- drink lots of water! My goal is to do daily walks by August. I used to be a runner, but I suffered so many ankle injuries from it, that I switched over to walking. If you want to talk about great therapy, try walking in the spring, summer and fall for the best medicine. You feel with the breeze, look at scenery and smell the fresh cut grass. Lesson: find something that you love that gets your body moving. Riding a bike, walking, swimming, jogging, band resistance, weightlifting, tennis, golf, basically anything. Our recovery is two-fold: emotional and physical. Do I still have body image issues? Yes. It’s something I recognize, but it’s not something that I’m going to act out on like I did in 2008. I understand it and I must do a lot of self-talk to get myself out of the dark hole. Physically, I believe the more active and normal I become; the physical issues will get better.
Question: What symptoms did you have or still experiencing?
Answer: Initially, I had massive pain after my second surgery, and it took a long time to recover. I was running low grade fevers and it didn’t matter what I did, I couldn’t get comfortable. I was so frustrated with the pain that I wanted to scream. I was told that within two days, I would feel better with the VP shunt. We all recover different, so please don’t be scared that this will be your journey as I have read that many people were able to recover quickly. I believe part of my issue with recovery was it wasn’t too long after my massive surgery. I couldn’t lay down because it felt like a painful golf ball on the back of my head. I can feel the tubing down my neck to my chest. It took a good month before I could finally lay my head down without much pain. I still experience it from time to time and I can still feel the tubing, but it doesn’t bother me like it did before. My low-grade fevers began to stabilize, and my BP began to stabilize as well. I would say the major issue I have is fatigue. I am always tired. It doesn’t matter how much coffee I drink; I want to sleep. When I go to the store to shop for needs, I become disoriented within 20 minutes of walking around. Recently we celebrated my husband’s birthday and after a couple hours I started to feel over stimulated with the amount of people and felt like I wanted to pass out. Before my stroke I had a migraine every day. Oddly enough the ruptured aneurysm happened to be in the exact spot. My migraines went away after my surgery, but from time to time I do experience some headaches that are debilitating, but I will take that over what I used to experience daily. Next, I initially had daily nightmares of my stroke but instead of making it, I would dream that they were pronouncing me dead. I would wake up sweating and crying. Those dreams have subsided some, but still occur from time to time. My other doctor says it's part of PTSD. Lastly, when I get up in the morning, I blackout and can’t see. My vision starts coming back after 5 minutes. I think this issue is related to my POTs syndrome since I’m quickly getting up. It’s funny how my POTs didn’t act up after I had my stroke and now that I’m getting better it’s acting back up. It’s amazing how the body pushes certain medical issues to the side. I do credit my autonomic dysfunction disorder saving my life because with it, my body is in constant fight mode and my body was firing on all cylinders. I think the overdrive gave me the strength I needed to act fast. Now I’m sure a medical doctor may say it’s not, but I believe it’s true. Overall, my symptoms are much better in my six-month period. I think I will continue to have stroke fatigue for the rest of my life, but it will get better in time and my energy level will get better once I have my strength back up. The little mini symptoms that come up occasionally are going to be there and I know them, understand them, and don’t let them bother me. My message to others is that we all recover at different rates and experience different symptoms. Our bodies are all different and complicated. It does get better- remember that. Don’t let your symptoms get the best of you. Fight because you fought the biggest fight of your life, so these symptoms are nothing compared to what you went through.
Question: Do you get tired of explaining what happened?
Answer-No! I feel that it’s my duty to explain exactly what happened so others are aware of symptoms to watch for to act FAST. Never in my life at 37 did I think I would have a stroke. I always related it to the elderly or people with high blood pressure. Since I was given a second chance, I feel it’s my duty to talk about my experience as much as possible. I want to people to understand, because I admit, even working in the medical field for 18 years, I didn’t realize what stroke victims went through or the different degrees of their experience. I want people to know, because if they do, it could save their life or loved one. I also want people to know that we need more support groups and research. The brain is so complicated, and yet not fully understood. The bonus- you ARE a warrior! Be proud and explain away.
Question: 6 months out, where do you see yourself going?
Answer: My goal is to immerse myself in the stroke world. I am blessed to be alive, and I’m going to take this opportunity to do whatever I can to support my fellow brother and sisters that have faced a stroke or help their loved ones. I started with blogging with a different approach than other blogs that gives insight on my true raw emotions, and not sugar coating anything. Not knocking other blogs, as they are beautiful to read. My route is authentic with my experiences which are not beautiful, yet I end everything on a bright note and promote being a fighter. Hopefully these blogs are assisting others. Next, I would like to be more involved with podcast to talk about my journey, and the lessons I have learned. I want to get involved as much as possible with the American Stroke Foundation and Brain Aneurysm Foundation. I’ve been approached to volunteer my time talking to other survivors and their family members via Zoom and eventually hold local meetings. Next, I’m working on a book about my survival. Last, I want to participate in any grassroots campaign for more research for stroke awareness and research. I’ve always wondered what my legacy would be leaving this world, and this is it. My life mission is to help others dig deep into their souls and know that they have what it takes to be strong. I will do everything in my power to empower, give courage, teach tenacity, forgiveness, understand emotions and know that they matter. How and when these puzzle pieces come together, I don’t know, but I’m starting, and I hope I make a difference.
Question: What do you want people to understand about yourself six months out?
Answer: I have always been a strong woman (thanks to my mom), who fights for what they want, what is right, and unrelentless. My stroke has transformed that power into something different. I know what I want out of life now. I have a mission, and I am very passionate about it. I am still that strong woman that I was before the stroke, but now that strong woman is full of passion, empathy and sympathy. I’m not looking out for just me- I'm transforming this situation into empowering others as well. I don’t hide my weakness anymore. If I cry, I cry and doesn’t mean I’m a weak person. If I get frustrated, I get frustrated, that doesn’t mean I won’t figure it out. I’m a fighter, I have been my whole life, but I had a hard shell too. The shell has been cracked. Don’t underestimate my intellect or abilities from this ordeal. If anything, I feel more intellectual and better at problem solving. I’ve also learned forgiveness. I forgive others who do not understand, I forgive myself for moments. There are three approaches to trauma. 1) denial, 2) go to a dark place and 3) come out stronger than before. Option three is more empowering and healthier and I will always use that option. I’m alive, and I shouldn’t be. So, my life begins with empowerment.
Question: How did your six-month post-stroke appointment go?
Answer: I was very nervous going there because it’s unknown what’s going on internally. I thought this was going to be a fast appointment, but we were there for several hours. When they called me back for my scan, they told me they were going to use contrast. I had a little post-traumatic response, since the last time I had had contrast I became paralyzed on my left side, but I had to remind myself that was from the angiogram not CT scan. As she tried to find a vein, I drifted into sleep. When it was over, she woke me up and I went out to the waiting room and called my neurosurgeon office to let them know I was on my way up (new protocol with COVID). When I was called back my vitals looked good, and I patiently waited for my angel neurosurgeon to walk in the room. She came in, and even with our masks on, I could tell she was smiling. She checked my incision sites and said everything looked great. She pulled up my scans and we looked at my clip, and it was still holding up and then looked at the shunt and it looked great. Overall, she said I’m a miracle and happy with my progress. I see her in three months and then get the dreaded angiogram done in Feb to check if there isn’t any more vessels at risk. She told me the chance of reoccurrence is slim, but it’s still there. Overall, the appointment went great and I’m happy with the results.
Question: Do you feel like your stroke has consumed you
Answer: Yes and no. There are many facets of my life that continue to thrive during my time of healing. I’ve began socializing again with friends and getting out of the house for dinners. I continue to use humor for everything, enjoy watching movies with my husband and play with my fur babies. My mind is not consumed with stroke life, however it’s hard to tell with the amount of social media that I do. I feel that it’s my calling, since I was given a second chance at life to do whatever I can to encourage people. I want to make people feel heard, understood and relate to them. Bringing awareness and help is my new mission and life, so it may appear that I’m wrapped up in this, but I do recognize that I must maintain a healthy balance getting back out in the world and enjoying my life.
Primarily, my six-month post-stroke has been a rollercoaster, but I have found a great community of people who are in the similar position and we lean on each other. I have family, friends, co-workers who root for me and show me love. I’m blessed to have the best neurosurgeon and neuro group at Saint Luke’s. I have so many other topics to cover so stay tuned for my next blog post. Remember- I'm there for you, I’m rooting for you, and if you ever need help, never hesitate to reach out to me.