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. 

An open letter to all Senators and State representatives

Dear Senator;

I see today that protections for pre-existing conditions do not yet exist. This saddens me, I am dealing with a brain tumor that rests next to my brain stem, I am also dealing with a dear friend who has had a brain tumor spread.

I want to tell you about him, he is a man of faith and family. He has lived a clean life, is raising three beautiful children with his wife and makes every effort to live ethically and morally well. He doesn't believe in sitting back and waiting for life to happen. He has worked for years in community programs and attended law school while coping with this medical challenge. Yesterday he was taken in for surgery to attempt to remove a tumor that was impacting his speech.

I look at what his family is going through and I know it is not the only story like this. Like me, he does not expect a handout or to take from others. What we do need is a fair chance, to not be taken advantage of, to be treated as individuals worth being protected. We have value and that value is one that teaches compassion and ethical treatment of all individuals. We pay into health care programs and work to our best abilities to make contributions to the community and our families. Through no fault of our own, we have faced a brain tumor diagnosis, no lifestyle choice led to our condition. We don't ask for a handout, all we ask is a chance.

Please, don't make surviving and thriving through a medical crisis a liability. Don't take away protections that would allow insurance companies to prey upon the weak again. Many say it will not happen, sadly this is not true, it already has happened, many times before the ACA. Social media sites are flooded with requests for financial aid and support to help pay for medical costs or claims denied by insurance carriers.

Those of us who fight tumors and cancer are every day warriors. As voices of different experience we offer tremendous value to the world around us. We know what it is to face losing everything. We know the value of the simple and the meek. We know and understand the impact of pain and what it can teach us. We also know the joy of hope and rising through crisis. I think the world needs more hope and not less. We need more triumph in the face of adversity and more grace under pressure. Please protect us from those who would prey upon our times of weakness. Let me continue to be a warrior and fight for my family and the families and lives of those like me. We deserve a fair shot at life, but only you can help us to protect it. We need your help.

May God bless you.

Dear Senator (Take 3)

I have recently written you as concerns disability rights and issues, I believe that healthcare may be a more appropriate topic. I beg you to maintain protections for coverage of pre-existing conditions. The actions of unethical companies that deny covered issues on the basis of a "pre-existing condition" inhibit free commerce, reduce mobility in the work force, and can sentence patients to death. It has been said that no one dies from denied healthcare. I beg to differ.
Raul Labrador, ID
While emergency rooms are required to provide lifesaving aid in case of a life threatening event, planned preventative care is not able to take place. In my situation, had I not arrived at the ER, prior to the Affordable Care Act, my operation to remove my brain tumor could have been denied. I would have been left to slowly waste away instead of moving forward to work again following rehabilitation.
Emergency Room:Legal Responsibilities
One life is too much. The issue of healthcare and coverage is a tricky one, but workers and businesses pay more than enough in premiums to pay for the healthcare needed. What they do not pay enough for is balloon payments and bonuses to insurance workers for denying claims, harassing patients, and using internal policies to pay the minimum possible.
Los Angeles 2009
CNN 2007
Please, don't leave another loophole to be exploited. I beg you to protect me, and please protect my children, protect their future. Please, don't make me have to talk to them again about mommy dying before they are grown up.
Thank you.

Dear Senator,

Dear Senator,

While I appreciate your written response to my most recent letter, I do not believe that a conflict exists between protecting what are considered "pre-existing conditions" with the new healthcare plan and working to replace those parts of the plan that are controversial, such as the mandate for coverage. I never thought that as a brain tumor survivor I would see my survival as a financial liability to my family. The toll it has already taken on my family can be seen in my children's needs and fears as my oldest son, who is 8, asks me before bedtime not to die. I lived a careful and healthy life. I do not engage in risk-taking behaviors; behaviors such as choosing to smoke, drunk driving, and drug use. No one has proposed using those as a measure of health predictors, rather than circumstances outside of individual control.

My focus needs to be on continuing to heal, caring for my family, and preparing to be able to work full-time again. It should not be on working to live, which current proposals would necessitate. Some estimates propose that my yearly healthcare premium would cost more than my entire brain surgery and hospital stay. This premium would not even mean that all coverage is met, it simply means I would have "access" to healthcare. For transparency my brain surgery and hospital stay were approximately $55,000. With my medications, therapies, and follow-up care I pay, out of pocket, a few thousand dollars per year.

I beg you, let survivors continue to thrive. Let us triumph and move forward to live and grow and contribute. I am doing everything in my power to show my children what living really is. Living is moving beyond challenges, continuing to grow and thrive. All I ask is a fair shot, let me live without fear that some insurance agency will decide at a later time that my life is a liability, that resiliency and determination mean nothing. Let me continue to live my life, on a level playing field.

Respectfully,
Making Lemonaid