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

To Whom it May Concern;

The letter I never sent sits on my desk. I can't do it. I cannot say all that I feel, my anger would overwhelm you. It's not fair to put that on you, but neither is it fair to leave it inside, dwelling and lingering.

Dear person-

While I appreciate your personal pain, please do not assume that you in anyway understand the scope of all that has happened. You haven't taken the time to listen, let alone understand. You assume and perceive my life through your own narrow lens. You make assumption after assumption, imagining that somehow I actually share all my pain. I may write about some of my challenges, more as an expression that they are real, but I in no way dwell on them. My life is made up of more than my injury, of more than my pain and I would much rather amplify the positive aspects of my life. Never fear, I am very aware of the realities, of the pain. Trust me, it never leaves long enough to forget. Please allow me to correct a few of the misconceptions about my life demonstrated in your letter.

"Well, at least you are home..." Factual yes, but this does not encompass the extensive support network that makes me living in my community possible. My husband is sometimes father more than spouse and I feel consistent guilt that I am, as yet, unable to be a full partner in our marriage. Every part of our relationship is a balancing act of my abilities and tolerance levels. My neighbors are aware and available should the unforeseen occur. I have hired help to get me through the days and do simple things like run and play with my children. I am home with oversight, care, and extensive support networks.

"You get to get better..." Yes, but again this is not without extensive support and effort. Every part of my day is weighed and measured. I have made many sacrifices of time and money to do everything I can to heal and improve, those efforts are paying off, but it is not without cost. I exist in a state of pain. That pain can wax and wane with the barometer pressure, dietary changes,  temperature, and even hydration levels. Here's the kicker, I am through less than 1/2 of my lifespan- I will live much of my life struggling with executive function issues, and when it gets bad, even basic bodily functions.

You go on to share your desires, despite what is best for others, with "I want...' Great, so do the rest of us. We all want but all of us must weigh the responsibility of what we want with our capacity. Endangering others for your wants is unacceptable. Period. That's it. You do not get to endanger others for your wants. Wants are not needs.

I love you. I know you are hurting, but I beg you to never assume that you understand the full reality of another persons life. You can share, empathize, and be with them, but you are not them. You can share, but you do not know. As long as you continue to use what you do know to justify your own actions and excuse your wants you will never know. Knowing is placing the needs of others over your own wants. Knowing is moving, even if it hurts, because it will be worth it. Knowing is showing love and hiding pain when it hurts the most because someone else needs the space for a time to grieve themselves. Only by working to really know can we actually see one another as they are, and not as we are.

-Me

To my surgeon

Dr. [AwesomeSauce];

In May of 2015 you treated me for a cerebellum based meningioma tumor.  You saved my life.  I wanted to thank you for your time, attention, and professionalism in ensuring my ability to live and function on any level.

The past two years have been a journey of ups and downs as I confront limitations, face social stigma, and learn to cope with continued challenges.  One challenge that exacerbated the others is that of being able to seek and find appropriate aftercare and support.  I wrote your office in early 2016 and expressed my dissatisfaction with the follow-up care and communication received from one of your associated nurse practitioners, [hewhoshallnotbenamed].  I was put into contact with [clearandconcise] and have appreciated her candor and clarity.  The difference in care is both startling and disheartening when the two experiences are contrasted.  [clearandconcise]  is exceptional both in her knowledge and in her clear communication.  While I struggle with comprehension, my husband was able to understand what [clearandconcise]  explained, even though it varied greatly from what [hewhoshallnotbenamed]  had communicated with us at initial follow-up appointments.

Through many appointments and working with an exceptional team of professionals at [myhomeawayfromhome], I have been able to adapt to functioning at a basic and simplified level.  I am working with vocational rehabilitation to recover professionally, and with a team of specialists to recover functionally.  I have progressed through physical therapy and occupational therapy and can physically function in most of my daily life.  I continue to work with speech pathology to recover cognitive function and the layered reasoning necessary for higher levels of interaction.  I have adapted to being completely deaf on my left side and have learned to understand the origins and nature of my continued tinnitus.  I am encouraged by assessments and support from [sweetestmanintheworld], the neuropsychologist that you referred me to see.

Over this journey I have found many things; 1. A qualified and experienced neurosurgeon is absolutely vital, 2. Goals and consistent, sustained effort by the patient are necessary, and 3. Recovery is best done with a team of experienced and supportive professionals who help to identify and maintain optimum recovery.  I find that many do not experience adequate recovery services and am concerned that while focused on the surgery itself, access to such services is not utilized as effectively as it can be.  Recovery is based upon two standards; physical recovery from surgery, and then functional recovery with any associated limits and challenges of having a brain injury.  It is this second level of recovery that is currently being underserved.

I am asking for your help in educating and sharing with the medical profession that what is being experienced by patients as “normal” is far below the best interests of the patient.  Simple solutions such as appropriate patient education regarding follow-up care of functional challenges, and monitoring of that care by supervising doctors is lacking.  I understand my case is extreme, that it is not common practice for surgeons to be found through the emergency room and that most patients are referred by other professionals.  What I continue to see from the patient perspective is that the trend to disregard or ignore functional healing is common for those doctors as well.  I am privileged to associate with a variety of patients from across the world, many of whom repeatedly express feelings of abandonment, loss, and disillusionment from their initial providers.  They stop seeking help or searching for answers, leading to a decrease in quality of life and fear of follow-up care and procedures.

My surgery and recovery are a pivotal miracle in my life. Your role as my neurosurgeon remains one of my greatest blessings, my healthcare team is another.  I believe without either of those two components I would not be looking forward to a life of decent quality.  I grieve for patients who express that they avoid appointments because they fear being ignored, dismissed, or hearing of another procedure.  None of these options is ideal and all result in decreased outcomes for brain tumor patients.  The question remains, how do we solve this?

I believe that as patients and providers work cooperatively and engage in open dialogue we can improve outcomes for patients, increase functionality post-treatment, and help both patient and provider engage fully in regaining optimum quality of life.  I ask your help in educating providers on providing follow-up supportive care, and creating a team based approach to functional recovery.  I am not sure of the proper format for this type of conversation, in the social work field I would advocate for presenting at local conferences and meetings of professionals.  Maybe the answer, in this case, is to begin one office at a time.  I propose a three-fold solution.

1.       Patients are provided reviewed and approved information regarding aftercare and recovery, to be given at various points along the healing path such as 14 days, three months, six months, and annually as needed.  Correct information helps answer questions that arise after appointments are concluded and gives patients something tangible to hold on to.

2.       Patients are provided access to and information about recovery supports such as speech pathologists, occupational therapists, audiologists, and physical therapists at their 14 day follow-up appointment. It is very easy to compile information of local providers and provide such information to patients to use as needed.  Patients often do not know what questions to ask or what is even possible; by offering the information providers demonstrate patient concern.

3.       At the earliest opportunity, providers and patients must identify a contact professional who will co-ordinate all care and ensure that the patient receives timely responses for any medication and follow-up care concerns.  This provider receives release of information for all reports and appointments so as to ensure that the patient is maintaining a positive healing trajectory.  This works to allow specialty providers to do what they do best and leaves general providers all the tools that they require to adequately do their job, improving outcomes for both patients and providers.

The changes I have outlined are simple and easy to maintain, taking no more time for providers and helping patients avoid medical burnout, improving outcomes for everyone.  Thank you for your care, for my life, and for taking care of people like me.

Neurodevelopment Fun

With study and research I have come to be fascinated by the brain and its impact on various areas of development. I was directed to a TED talk this week and found it to be fascinating as well as the implications for healing and developing healthy neural pathways was quite amazing, and then I found an old favorite. Here to explain the brain in simpler terms are Pinky and The Brain- Parts of the Brain.

So much fun. Here is the lecture of Joe Dispenza- enjoy.

I Am A Faker: The Reality of Living with a Disability

There is so much misinformation and propaganda out in the world regarding the disabled. I hear people talk about the ones that "fake it" and social programs such as SSDI are called "entitlements". Disability Fakers by the Mighty  Being judged without people knowing my story is awful. I worked for 20 years. I have held a job since the time I was 16 years old. To be part of a demographic spoken of as expendable or a parasitic is an awful feeling. Here is the reality, I am different.

I am different. My body is different, my mind works differently, and my ability to recover and respond to situations is very different. I don't fit a mold. I don't fit in the nine-to-five, measured box that is comfortable for society. Interacting with me is harder, I don't get out much, I am not the life of the party. I am not charming and exciting to be around. I will not improve your social cache. Knowing me offers no financial improvement, no special bonus points, no benefit other than my company, but that does not make me worthless or expendable.

I am quiet, unassuming, going about my day which consists of rehabilitations activities, medical appointments, maintaining what part of my life I can, and trying to get better. I am lucky and blessed. I know who I am and what I can do if given the opportunity, but I am still healing. The damage from my brain tumor was extensive and to a part of my brain that is vital to function. I am working to improve and I am so very grateful that I have that opportunity that is denied to others.  I know and have lost dear friends who had no hope of improvement. 

Every three months or so I have to complete another packet from my insurance company assessing my skill level to see if I can return to work; it has been 19 months from the time of my emergency brain surgery. Along with questions regarding daily activities I must submit information from each of my specialists- I see six, soon to be seven medical providers. I must have an assessment of my personal skills completed and I am required to provide documentation in writing with notes and contact information. It takes me days to compile this even though I save copies of everything. No part of my life is left unexplored, no information is too invasive or off limits. I have no private life, everybody knows everything.

Every day I fake it. I fake not hurting, I fake my smile. I fake understanding when things move too fast for me. I fake being thoughtful when I am so overwhelmed I cannot respond without stuttering or freezing up. I fake being calm when I have a new range of symptoms. I fake it at the grocery store where I plot my list well in advance and go during my best time of day when there are likely to be fewer people that I have to interact with.

I get up in the morning and make sure that the first two things I do are to get dressed and make my bed. Why? Because if nothing else goes right it at least keeps me moving forward and less likely to burrow back into bed to hide from the pain. I do have pain. On a scale of 1-10 I live at around a 6, when I let myself think about it. I try to think about it as little as possible. I schedule my day with regulated therapies and a rigid schedule that keeps me moving forward. I have regular ands frequent breaks and try to hold to the advice of my rehab team by setting my schedule "in Jell-o". I try to allow flexibility where I can but with the brain trauma the more predictable my day is, the less stress it creates for me.

I fake competence in any area, doing enough to get through it. I used to excel as a student and took pride in learning for the joy of it. I loved doing research and presenting my findings to my co-workers, preparing handouts and teaching tools for those that I served and worked with. Now, I am struggling to hold on to a "B"- and it is taking everything I have to attend online classes at half-time. It takes me two to three times as long to grasp even a part of what I could learn by reading it through once. I fake humor about the pain, about being dumb, about getting through this and holding on to the lessons that I have learned. I have already done more than what anyone expected but still I "fake it".

Milestones

This week has been full of ups and downs. A dear friend, one who was diagnosed shortly after me with an atypical brain tumor, has passed away. Same primary diagnosis, same surgeon, different outcome. I'm not sure how to confront or deal with this. All I can say is that survivor guilt is real. Just two days later I watched my son pass a milestone that I would have missed out on had statistics had their way with my life.

The greatest joys and the saddest losses, both seem to center on family, on connection, on personal relationships. Hold loved ones close, take solace in quiet moments. Play one more game, read one more book, play for five more minutes with your loved ones. Say the hard things, the real things. Speak the important words and let go of the rest. Hold them close and know that life is eternal and is so worth living.

Do not quit, do not give up. Live every moment with every thing that you are and you have. If you do not love your life take the steps necessary to change it. We all have bad days, we all face hard things, that is not all we are or all we have. The moments with those we love, the quiet of our hearts, the peace we find makes it all worth it. If you do not have peace, change what you need to change about yourself so that you find peace. You know what changes need to be made, stop fearing change and move forward. The time is not endless in this life, use what you have. Connect with those you love, before you run out of time to say what needs to be said and do what needs to be done.

God is good. He loves you. If you cannot have faith in that then begin with hope. God bless.