TBI and the Kitchen

Providing and caring for my family, at even basic levels is very challenging. I used to cook an extensive and well thought out menu. My husband and I, at one time, ran a very complex group home where I cooked daily for 10-12 persons. I also had to organize and complete all shopping. Prior to my craniectomy I had a 5 week, nutritionist approved menu with associated shopping list, divided by store. Now, I'm left to only short and simple recipes.

In talking about this challenge with my sister, I realized that everyone struggles with making dinner and what to make for dinner. There are multiple sites that address this; sending you daily menus for minimal fees, structuring your shopping list, etc.

I have already, for myself, learned to work within mostly what I can do and now make fewer mistakes. Due to the trauma of my surgery and the injury from pressure, I can make only the most basic things and my husband and children help me, every day. I have everything written down and simply restructure it based on day and need.

There are some basic rules to help you get started.

• Cooking for my family is an all day event. I complete prep work throughout the entire day as part of my OT and PT homework.
• I plan very simple meals on days that I have rehab sessions or other external stressors.
• Rest when planned, don't do too much at once.
• You will make mistakes. Mistakes are adventures.
• Always have a backup just in case; cereal or canned soup and sandwiches work great.
• Organize your space. Eliminate or minimize distractions.
• Check ingredients and pull out everything you will need to cook your meal. Put it away when done, this can help you track what step you are at. 
• Break the job up into tasks of no more than 5 steps.
• One task at a time; no more.
• Write it down. This is where I make most mistakes, I lose track and forget or double steps. 

So, there you go. How to cook with a brain injury. Experiment. Have fun. And keep a sense of humor, it helps.

One last tip. Siracha sauce is magical. I have some nerve trauma so many foods taste like children's paste. I enjoy foods based on texture and temperatire. I have some taste sensation, but to really "feel" my food, spice adds a chemical component that I can sense. Sushi is my happy place. 

Being Whole

I find that in many ways the body and brain and surprisingly resilient. Many challenges and limitations can and are overcome on a daily basis. You hear stories of the body repairing and healing itself, without medical intervention. Doing what it needs to do to grow, function, and thrive.

I learn so much each time I attend my rehabilitation/therapy sessions. I learn ways to stay healthy, trigger healing body responses, and diffuse stress. Learning a whole body approach after injury is vital in maintaining resiliency and continuing to have hope. Keeping a positive outlook and having hope helps both my brain and body in the healing process. Many chemicals and hormones contribute to this healing in recovery.

The brain and body require hormones and chemicals in order to perform primary functions. One of these vital components is the hormone dopamine. Dopamine is essential in the body performing at its most basic and healthy levels. Dopamine. The body produces dopamine and is able to use it in healthy brain and body function.

Dopamine production in the brain is a singular chemical because there is not only one way for it to be produced/developed. Dopamine production is possible using a variety of triggering mechanisms. The triggers of dopamine may be related to accomplishment, health and fitness, sensory experiences, and even study and discovery. For a complete and whole body approach it is best to have multiple tools at your disposal to trigger dopamine production.

Examples of triggers for dopamine production may include exercise and sleep as part of the health/body triggers for dopamine production. Lack of sleep, on the other hand, leads to lower and decreased levels of dopamine production. In the short term this can be augmented by increased triggers in other areas, over the long term it can lead to chronic stress and disease in the body. 

For me, a regular and planned approach to triggering healthy dopamine production offers the most benefit.

• Accomplishment/Achievement may include such triggers as check lists, small steps toward larger goals, screen games such as Candy Crush, and even tracking days of a particular accomplishment. A friend of mine has a kitchen chart where she tracks numbers of days her kitchen has been cleaned each night. How can you track your accomplishments? What steps can you take, or are you already taking, that help you to trigger a sense of achievement?
• Health and Fitness are triggered by exercise, defined as 20-30 minutes per day of exertion. Sleep is also a producer of dopamine production. This requires healthy sleep, in the range of at least 7-8 hours per night. This amount may increase based upon personal need. For example last year, just after surgery I slept for approximately 16-18 hours per day. I still require extra sleep in the range of 12-13 hours per day.
• Sensory Experience includes such triggers as enjoyable foods (comfort food), listening to pleasing music, pleasant textures, or pleasurable emotions. With my decrease in taste and smell I no longer desire the flavor of ice cream but the temperature creates a chill and calms and cools my brain. A brain freeze can actually serve to offer pain relief from the heat of summer. Who knew? So, I don't care for the taste but the temperature is a relief and can serve as a trigger for dopamine production.
• Study and Discovery serve to release dopamine through meditation, prayer, mindfulness, creative pursuits such as writing, drawing, painting. Exploration of self and the world around us can act to help us both stay engaged with others and ourselves. Fascinating to learn that as I work to document my experiences in recovery I am actually working to create a prime environment for healing and healthy function. Amazing.

The more I learn in recovery both about my condition and the systems put in place by the body to compensate and heal from them, well, the more hope I have for a more complete recovery for myself and others. As we learn what the body and brain are capable of we can learn ways to trigger the necessary responses and offer hope for traumatic brain injury, brain tumor recovery, and even mental illness treatment.

God is good and I feel and see so much how His small mercies have served to create an environment perfect for my healing. I am making progress past the point of previous expectation. The mind and body are capable of more than we know. What and incredible miracle and blessing.

God bless and keep you.

Eating

One of the biggest changes for me is pretty small and simple, but it affects me daily. One of the areas damaged is my ability to sense and feel hunger. I simply no longer have it. I also have lost much of my sense of taste. In the beginning I had noticed changes, when everything tasted like child's paste. At this point, I'm not really expecting it to come back.

I have trouble tasting salt. There have been some really bad mix-ups when I cook unless I have help. I also love sushi, so much. (This is funny because I hated it before.) I think I have pretty much narrowed it down to the spicy mayo, siracha sauce, and hot mustard. These, for some reason, taste to me. To be able to taste any food is amazing. I've started adding spicy mustard to sandwiches just so that I can taste.

I'm working with my doctors on keeping to a meal schedule and eating healthy portion sizes.  I tend to not eat enough and have lost a lot of weight over the last year. Some weight loss is ok, too much is not good because my body is still replacing lost and damaged tissue. We are tracking it and it is not at unhealthy levels. I have the most amazing team that help me to make sure that I do not suffer needlessly.

I loved food. Flavors, textures, the layers of savory and sweet. Oh well, every day there is something different, but every day I am here. I stumbled across a random fact the other day, a baby does not at first know how to taste salt. It takes four years for them to be able to detect it in their food. I'm giving myself four more years but not stressing over it too much. My husband loves sushi so for now, we just make sure that I get some on a semi regular basis.

God bless you!

May 5; Revenge of the Fifth

Continuing with the play on words, each May 5th is Star Wars Day revisited. Its easy to see why, with May 4th being Star Wars Day, well fans of the Empire want to play along too. Its silly and in good fun.

One thing not in good fun, is the long term prognosis for brain tumor patients. Meningioma, the most common form of brain tumor has increased its likelihood of occurrence. It used to be thought that only a small percentage of these tumors would reappear, that once beaten, you were cured. New research shows that this is not the case. It is now believed that fully 50% of all meningiomas will regrow at 10-20 years post removal. With patients being diagnosed at younger ages, this leaves us facing life threatening conditions or surgery multiple times in our lives.

The journey is never really over. Like the Sith, it can rise and reoccur at any time. Multiple tests and scans will be done over my lifetime. Because of the need for follow-up MRI I am required to limit my exposure to other forms of medical assessment; dental and chiropractic x-rays must be on an "as needed" basis.

The other specter for the rest of my life are seizures. Any time, any level of intensity. While I am not considered a "likely victim" of seizure, they can still just show up one day. I have to be prepared on how to deal with it. I had to teach my toddler to call his daddy in case mommy gets hurt and can't wake up. As one friend said- "Lots of free sides."

The journey is not over, I'm not throwing in the towel by any means. The long game is what concerns me now. One day at a time, I can do this. So can you. Together we can work to increase brain tumor awareness and work to a cure.

God bless you!

My Hardest Day, So Far

"I can't, in good conscience, put you through this. I will contact social security with what we have, if they need more, lets meet another day and start fresh. I just can't do this to you, even though you are willing."

Todd took the day off so he could be with me. I am so grateful he was there. With my experiences working I have taken teens and youth for similar exams to evaluate performance and identify strengths and weaknesses. We knew the tests and evaluations to assess my present state would be challenging for me. I hoped to complete the exam and that results would show where my damage was done and specific deficits I am working around.

With my rehab I have done many similar type exercises. As I set to work, it became apparent that this was vastly different. I couldn't use any of my coping strategies. (My evaluator called them 'cheats'.)

"Really? I can't do that?"

"No, we need to see how your mind works without them."

"It doesn't. I don't think I can do it if I can't separate things out."

"Do your best."

That has been my mantra. Do your best. Try and see if you can do it yet. According to what Todd was told, it took me over 10 minutes to attempt an exercise that takes most people being evaluated 2-3 minutes. After relearning shapes this summer and working through using patterns for problem solving I was stymied when faced with new or irregular shapes that didn't conform to consistent patterns.

Further testing confirmed that without visual aids my maximum short term memory is two to three items, at best.  There is a difference between suspected limits and confirmed limitations. After sobbing out that I could remember the shape in my head but I didn't know how to draw it, I felt so low and stuck. I keep repeating to myself that where I am now is not where I am going to stay, but it is hard to consider how much I have to relearn. At least in the real world my 'cheats' are just accommodations.

This assessment pushed me completely to my limits. I did everything I was capable of, it was even less than I had hoped. My head aches, my neck is on fire, my voice fades in and out. I slept for three hours yesterday after coming home, and then slept for about 10 hours last night. I am still tired but my body just can't sleep any more. Easy day today. I have taken more pain meds in the last two days than in the previous month.

Overall, it was hard. Harder than I imagined to complete only one part of the assessments requested by social security. I am facing one more assessment for them and then a complete workup requested by my neurosurgeon with a neuropsychologist. I am both afraid of and looking forward to the evaluations.

I know I am missing large parts. I know things are very different. I am still grateful and floored that I retained as much language as I have and that life led me through experiences with such repetition and familiarity that I use every day. I am so grateful that my experiences in social work and with the Teaching Family Model applying cognitive behavioral techniques were such a large part of my life over the past ten years. It's how I function every day. Models for my daily schedule are based on the schedule I kept for our youth, to help them regulate after abuse, while they mentally healed. I use it for my physical mental healing. Its going to take a long time.

There it is, I have a long road. More tests. More assessments. More relearning things I took for granted. I am grateful. I am scared. And sometimes, I am embarrassed because our culture does not look kindly on the broken. I am aware enough to know how far I have to go and that some pieces will never be reclaimed. I try to hold to what I have. To hold my boys and know that for them, they just need their mom. Sometimes its hard, so I give myself space for that too.

My advice, do your best. You may not be there yet, but you can keep moving forward. God bless and keep you.

Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things to any medical patient, let alone a brain surgery patient. I am sitting here just in awe at the lack of empathy shown to patients who literally put their lives in the hands of their providers. Not all providers behave this way and I have a pretty incredible support team, but sometimes I am shocked at how I and others going through similar challenges, are treated.

 

1. It's not that big a deal. Beg to differ. Its my life, my mind, it is that big a deal. I want to know everything and have it explained clearly as well as given to me in writing. Why? Because I won't understand just on hearing it and I will need reassurance that I am going to be OK. I don't need a pat on the head and pacification. I promise to read and review the information often, making sure I am doing everything possible to restore my life.

2. It's nothing to worry about. I am missing parts of my life, my memories. I miss my friends, and connecting fully with family. I miss going out with loved ones without planning for a siege. I experience constant debilitating anxiety as well as random panic attacks. Most people only imagine the worst, I have lived it. My own body has tried to kill me in a slow and painful way. Please don't tell me not to worry. If I worry, I can turn it into a plan. It helps me be safe, protect myself, ensure I don't lose anymore than I already have.

3. No, your tumor couldn't cause those symptoms. Really, because I didn't have that problem until I had a tumor so excuse me for thinking that A + B = AB. I'm pretty sure that loss of balance, hearing difficulty, pressure headaches, vision distortions are linked to the mass pressing on my brain. It's just a hunch, because you know, everything is regulated through my brain.

4. I don't know why you would feel that way. Um, because I have a tumor in my head, I just had surgery and might be facing another one, and something is interfering with the part of my body that regulates everything else. I can't imagine why I would be a complete emotional mess and confused about everything going on around me. I get that I look relatively healthy on the outside but should I wear a sign describing all the ways this has already messed with my life? Memory, balance, light and sound sensitivity, I can go one but it gets depressing.

5. Are you sure that that is what you are feeling? Seriously, you immediately question me about what I am going through and feeling? All I can do any more is feel. I feel sick. I feel tired. I feel scared, lonely, afraid. Isolation is my new best friend. I can't begin to explain the layers of feeling in my head every moment of every day. If you think listening to me talk about how I feel is confusing, try living through it. I'm a bundle of grateful, terrified, humbled, horrified, small, and aware of my infinite potential all at the same time. It doesn't matter how my feelings make you feel, they are mine, they are real, and I own every single one of them.

I get that, to some, our problems seem small. Brain tumor patients don't look sick, we don't always act sick. You don't see the bad days when we lay in bed crying from the pain. You don't see the struggle of getting out of bed when your muscles are screaming at you, when your vision is blurred and when everyday sounds are louder and more intense than sitting front and center at a rock concert. I hold to the empathy and love during these times. But, if I call you out for saying or doing something insensitive try to give what I say some credit. Or, at least, don't be an asshat.

Speech Pathology

I have had the opportunity to have some pretty neat discussions about speech pathology. What is it? Why do I need it? What do I get from it?

Here is my humble, basic response.

Speech pathology works with everything from the neck up. All my damaged nerves, speech problems, vision and hearing challenges. Most importantly Speech pathology works to help my cognitive function, my thinking. My neurologist does a great job working to keep my brain physically functioning, removing the tumor, tracking growth and recovery. My speech pathologist focuses on how my brain is now working. Helping me to retrain the damaged portion, take breaks before overload, and self monitor my need to rest periods. Speech pathology keeps me functioning.

There are many things that speech has helped me to understand and interpret as I go on this journey. It has worked on my number recognition, time comprehension, sleeplessness, fatigue, compensations, and even my ability to speak. I have written about individual challenges over the past months.

I found today that I have been exceedingly blessed with my provider. He is working to pioneer aids to reteach the brain. He began working first with stroke patients but has adapted many techniques for me. I would love to see a program made accessible for patients. I know many who have had brain surgery and are told that the trauma they have experienced will heal on its own. Maybe, my rapid progress is because he is teaching me to monitor and evaluate my abilities and adjust my activities based on need.

TBI, PTSD, craniotomy, and even "watch and wait" survivors all have impact trauma on different parts of the brain. If given the tools to heal, we can regain much of our lost function. How blessed I am to have a provider who listens to me and hears the things I can't always say. I'm going through brain development of a child, with the cognition of an adult. I am so grateful for this opportunity to learn.

God bless.