Remaking the Holidays

This year has led to so many changes in our home. Going through weeks of radiation led to another shift in how we approach our days. With the holiday season approaching, it also became necessary to look at our traditions and consider changing things up.

We must be willing to change where we are now to get where it is we want to go. 

It is not enough to say, "This is what we have always done." That is a poor reason to do anything in life. Break down the day. What things serve you? What things fill your soul? What actually matters to you? And what no longer works? 

If something no longer works for us life, we realized it is ok to look at changes that more accurately reflect who we are now. This can mean changes in who we spend time with, how we spend your time, and even how we celebrate. I used to prepare an extensive meal, decorate elaborately, and even do most of the housekeeping. None of those things work for our family any more.

This year, we are changing most of our holiday meal. We are changing when we have family and friends visit. We are changing our gift giving to reflect where we are now. We are taking away things that pull away from what it is we want to accomplish, while leaving room for those things that matter most. 

We need to have reasonable expectations of ourselves and others. 

As we have shaped how we are approaching the holiday, we also needed to set some reasonable standards that reflect our priorities. It is unreasonable to assume that we are the same each day. It is ok to adapt our expectations to the situation. 

High stimulus environments wear me out much faster as I work through layers of light and sound. We have young children in our fmaily, some events are simply not a good fit for us right now. It is ok to adapt how we interact and what we interact with to reflect who we are. 

No apology. No explaination. No agenda necessary. 

When we are adaptable we can expereince the holidays as we are and instead of meeting the expectations of others, we are able to authentically engage with our world. We are able to do what matters most to us, and enjoy this time for celebration as we are today. 

Moving beyond what was, is encouraging us to try new things together. I couldn't be more excited. 

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. 

Changes and Radiation

What a busy few months. My annual review this year showed growth, only instead of growing out, the tumor grew in. In between my cerebellum and brainstem. My appointment with my neurosurgeon lasted about 5 minutes, with a referral to Huntsman Cancer Center being the end result.

We met with the radio-oncologist to discuss my case and were urged to wait no more than 6 months to begin treatment. We chose to begin treatment in early September, it presented the least amount of possible disruption to the family and the kids.

I learned  that there are many types of radiation, some better for certain tumors, others for location. Gamma knife, Proton therapy, IMRT...so many ways to administer what the body needs to destroy the invading cells in order to allow the body do what it does best, heal. My treatment consisted of 30 sessions of IMRT radiation, or six weeks of daily treatment Monday thru Friday. 

It Takes a Village

I had so much help during this process. Rides to treatment, help with my kids, help with meals (we prepared in advance as much as we could). I was able to use a volunteering site to help track and organize information. People could log in and help where able. 

I am so grateful for the small and sometimes not so small ways that people reached out. My family, from out of state came to visit, which was wonderful. I had friends step up on days when my treatment conflicted with times when my kids would get out of school. My husband changed his work schedule to e with me when he could. When he couldn't be there, I had friends step up to help with rides to and from treatment. So much love, so much concern, so much real help.  

Treatment

My appointments were about 30 minutes away, and averaged between 10-15 minutes in length. I got to wear a mask fitted to my face that held me in place and bolted to the table. This helped ensure that the beam was placed exactly where it was needed. 

I had an amazing team of nurses. They offered support, advice, professionalism and friendship when I needed it most. My treartment team has a tradition of giving flowers to one patient each week. There were days that those flowers brightened my day. 

The first two weeks all I noticed was that I didnt want to eat, and that I was tired. I have been working to regain endurance and feeling this level of fatigue was discouraging. I tried to stay focused on the outcome. I was going to heal, fully. My tumor would be broken down my my body and elimintated. My son said that the beam was like a lightsaber, burning the tumor so it would die. His dad and I agreed, that was exactly what it was like. 

The last weeks I became more tired. Early bedtime. Naps. Simple tasks. Low stress. Nutritional changes to support healing. Meditation. We used it all. I tried to give my body every advantage to heal and recover. 

Coping

I used things like turmeric, garlic, ginger, and even pineapple in my diet to help reduce inflammation and support my immune system. I still puffed up as my lymphatic sytem became more stressed. My skin and hair became dry and brittle, but I was blessed to have no hair loss. 

I kept up with low impact movement; short walks helped me to stay connected without placing stress on my system. I read books on healing and recovery. Some people complain that movies like The Secret and authors like Joe Dispenza minimize illness. I disagree, I found their messages to be hopeful. Not as a minimization of illness, but rather an elevation of self. We are stronger than any challenge we will ever face. 

That is empowering to me. Some days I hurt. Some days we all hurt. But each day, I can make something better, even if it is not me. I participate in consistent self care. I engage in intentional acts of creation on a daily basis. I focus on learning more about myself and work to find ways to reach beyond normal limits, because we are all capable of working beyond normal limits. 

Daily Routine

Preparing more documentation for medical review I sat down, only to find that there are some changes over the last year, but maybe not as many as I like. That doesn't stop me. The world tells us that we are only what we can do, when you can't do much that can feel limiting and discouraging. I challenge you to find what you can do. Focus on where you are going, not where you are at. It is important to be honest about where you are, but focus time effort and energy on where you are going. 

Daily Routine:

           Wake up with family, dress, eat, medications.

           Walk for PT. Rest. Review email and mail. Read.

Eat lunch. School work. Rest.

            Kids home. Husband help with after school reading time. Rest.

            Work with family to make and eat dinner.

            Family time. Read. Bedtime.

That is an average day. I continue to breakup low levels of activity with rest. If fatigue sets in then headaches and loss of neurological control result. I lose the power of speech, become disoriented, distracted, and begin to have tremors. I struggle to keep mood high and level, rest hydration and attention to diet are necessary. I take a daily NSAID to help with the pain but that really makes it bearable. Opiates are not a good choice for me, so I work with Dr. Awesomesauce to keep medications as low as possible to avoid effects. I do keep a small garden to help with depression and physical therapy for fine and gross motor control. I cannot work in the garden daily, but the hopefulness of the flowers helps me to stay involved and engaged with my community.  I had to stop volunteering in my church after surgery and it took me a long time to go back regularly. I am still very restricted in my activities and need the support of my husband to attend. His support allows me to be as involved as I am, he helps me when I stop being able to think or reason. ex. I have spent 45 minutes completing this information. I am in a quiet room, by myself, no distractions and in that short time I have a headache from trying to be clear and cohesive and I will be going to rest so that I can function for lunchtime, when he will check on me to make sure that I am eating. 

I have three calendars in my house and my daily schedule on my phone; medications, meals, and even time when my kids get home from school are all programmed. I struggle with tracking time and this is the only way I have found that I do not miss my self-care.

I journal daily and have prepared a recovery journal based upon daily gratitude on focus on the positive. I adhere to the principles of Steve Bow who said, “God’s gift to you is more talent and ability than you will ever use in one lifetime. Your gift to God is to develop and utilize as much of that talent and ability as you can, in this lifetime.”

I am doing my best. I am doing more than the doctor believed that I could. I can speak in most cases, I can walk, I can hug my kids. I work every day to become someone better for this experience. The stress and strain of having to go through constant medical evaluation brings home how far I have come but illustrates how much farther I still want to go. I balance my day trying to keep everything manageable, the pain, the “dumb” when my reason stops, and even my brain stem functions. That is my day.

Still Fighting

Do you ever get the feeling, during this whole recovery process that you are whistling at the wind? So often I find myself living the Red Queen Rule of Life. In Alice in Wonderland, Alice and the Queen find themselves running as fast as they can, but getting nowhere. The Queen explains that they run just as fast as they can, simply to keep up and not fall behind.  That is how this whole tax reform (legal piracy) feels to someone with a medical challenge. We are already running as fast as we can just to engage in life, and now someone outside of our lives has decided to move the goalposts, for no better reason than to justify tax breaks to people and corporations that do not need it. If a company wants to be competitive then they need to design better products. I can choose to buy or not with my money.

Choosing to give them free tax money without a demand for reciprocal protections for employees is shortsighted and foolish in the extreme. Essentially Congress has decided that they get a payout, not for work or products done, but just because. This is the ultimate in a free handout. This legal piracy will cost the federal government and thereby the American People trillions of dollars, with no return. It is the height of hypocrisy to bemoan "entitlements" as Paul Ryan has done, while handing a blank check to corporations that do very well financially and have more tax deduction options available than the general consumer. Corporations also use more of the infrastructure than the general citizen. It is American dams, airports, roads, streetlights, and sewer systems that they use to conduct business. Their taxable income occurs after operating expenses are deducted, so they often pay a lower rate than the average individual. Corporations simply possess more buying power of congress, they write the cost off on their taxes.

Dear Senator,
I am writing you today to express my deep reservations and concerns regarding the current tax bill before Congress and it's potential negative impact on families with medically fragile children as well as cancer patients. There is nothing in this bill that will improve lives for many facing medical challenges. There is much that is potentially devastating. Loss of medical tax deductions, impact to social support services, as well as impact on Medicaid coverage have the potential to begin a slide into extreme poverty for many. These are parents and families who are already fighting with everything that they have. It is completely wrong to cut out their deductions to pay for hedge fund managers and private planes. I ask you to consider the children and families of those in your area that fight for life. The University of Utah, through the Huntsman Cancer center serves more than just Utah. It serves some of the best medical care in the western region. It's patients include doctors, nurses, lawyers, mothers, fathers, and children. I beg of you to think about them and do not do anything to hurt them further. This tax bill will be devastating. Don't hurt them more.

Getting Through Bad days

Please understand that the following post is not medical advice. It is not intended to treat or diagnose any issues. This is simply my experience and may offer ideas to discuss with care providers. I am not an expert , nor to I promote myself as such. I am simply a patient doing the best I can to get through a challenge that I never expected to have. 


I sill have some really bad days. Mine are often due to TBI and the depression that can folow significant brain injury. It doesn't work the same as it did before. Things impact me differently now and they are often erratic in their expression, very little in the way of specific triggers can cause them. some days are simply harder than others. Here is how I try to get through those "bad days".

1. Hydrate; dehydration makes existing brain issues worse. This is always my first step as any dehydration is unable to be tolerated by my brain and it starts to not work correctly. 

2. Get outside. Even if it is just my front porch, breathing fresh air helps. I am lucky to live next to some wilderness areas so walking is doable too. 

3. Good food. When is the last time I ate something good for me? I keep fruit and veggies readily available, sugar is good for a moment but the later crash only makes things worse. It can be fun in the moment, but payback is awful.

4. Exercise. If I haven't done it already, a 15 minute walk works wonders. 

5. Pet therapy. I lost my fur baby of 15 years in October and it has been hard ever since. For right now pictures of her and sitting in my garden where she used to sit with me can help ease things. 

6. Reach out. If I am still funky, or at any point in this whole thing I phone a friend. I may also write in my gratitude journal or write about something I am dealing with on my blog. 

I can't skip the hard stuff, it's real and it happened. Giving it space without judgement while also addressing the physical aspects can help me to get through it. I can tell you that knowing it will end helps me to get though to the point where it's a good day. I try to always remember that there are physical aspects to this. People that say things like- "pull yourself out of it" don't understand all the layers that exist. I try to give my brain and body every reason to have a good day. 

This is a good and beautiful life. it is worth living every minute to the fullest, but that doesn't mean I pretend that things don't hurt sometimes. Pain is part of my journey to teach me humility, but it is not worth choosing to live there. I encourage you, if you are struggling, to seek out the resources you need to find the space to continue healing for you. Brain injury plays a role in my life, but this is still my life and I choose what to allow to expand and grow. I choose to live and to continue learning. God is good and blesses me in so many ways. 

Daily Progress

It doesn't happen much anymore. There are rarely the "Aha!" moments where something magically happens and I show measurable progress. It;s hard to think about the things still missing, the parts that are still broken. Today, i had a breakthrough. I don't know if it will last, if this part of me is coming back permanently or if it is a simple fluke. Today I found part of my soul. 

For the first time in over two years, today I was craving music. Like needing music, I used to always have music as part of my life but this crazy tumor made listening to any sounds so painful. We did all sorts of tolerance training and finally today I just felt funky, I couldn't figure it out. (Yes, I have some friends going through some really tough stuff, but that wasn't it.) Right now, and for the past hour I have made dinner while listing to classic rock and folk music. Chicago is playing and all I want to do is sit and cry in relief, it feels so good. I can sway, I can dance in my kitchen, it's like finding a lost piece of my soul. The music touches my heart without the pain that always now seems to be there. This is a gift and I am not ignoring the mercy that this moment is. I don't care if the house is clean, or that everything is ready on time. None of that matters as i spin at my kitchen counter. Not every day is like this, but today I get my music.

Progress still happens, it is slow and you can never stop pushing against the walls of possibility for more, push for more so steadily that there is no other option but that the Universe grants your request. daily practice, daily effort, these things move mountains. These things can retrain the mind, no matter the extent of the injury.