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. 

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.

Room at the Inn or The Night Baby Jesus Came to Stay

The doorbell rang just as we sat down to read. Luke 2, the story of the birth of Jesus was the plan. Wondering who it could be we opened the door, only to stare, stumped at the baby in the manger.

Baby Jesus was on our doorstep. No letter, no note, no idea of why he had come or who had put him there.

"So , what do we do with him?"
"Well, we start by bringing him inside."

There it is, the statement that caught my attention, "we start by bringing him inside". Isn't that the way it all begins? Simply by letting Christ into our hearts, into our lives.

Christmas Eve night and all the next day I pondered the meaning of the question of whether I let Christ into my life. Do I make room at my inn?

We searched for who he might belong to. My sons were certain that someone had given baby Jesus to us, I cautioned them that we had to be sure to try to find his owners. The quality and care with which he was wrapped had me concerned that he belonged in someone's beautiful nativity display. The manger was handmade, animal skins lined the bed, and the babe was wrapped in swaddling clothes. Herbs and hay padded the manger, making a soft and safe place for the baby to lay. Care and love was shown in every part of the bed. I think that Joseph and Mary would have shown such care, still I feared that someone was missing a vital piece to their holiday this year.

Christmas night I received a message- Baby Jesus had come to stay for the next year. A reminder to make room at our inn. After focusing on the beauty of the gift of that life and offering a year of random acts of service, we will have the opportunity to pass him on. We will choose a family and gift baby Jesus to them, a note will explain all, what a fun way to remember what is important.

I pray that my sons will always remember the year that baby Jesus came to stay. God bless and keep you.

Is Medical Marijuana a Viable Alternative for Pain Management?

 

Pain is a constant in my life. I live every moment breathing and working through this layer of distraction so that I can engage and function as normally as possible. I have worked with my doctors to exhaust any and all tools for pain management but the options available fall short. In my research on pain management tools to use in addition to a regimen of meditation and mindfulness, yoga, physical therapy, occupational therapy, nutritional decisions and physical activity I continually come across the idea of medical cannabis as a pain management tool. This is an emotionally charged subject and has been the cause for recent social upheaval and political discussion. Misinformation is rife and everyone seems to have an opinion. Voices cry on every side of whether the use of prescription cannabis is necessary. Some insist that medical need is an excuse for habitual users to avoid legal prosecution. Others argue that medical cannabis is the only option for competent pain relief without violent side-effects. Both sides are impassioned and express the belief that they are solely right. So, where is the resolution? Is there middle ground on the issue of medical cannabis?

I started my search to first find reputable resources that offer an unbiased and real look at the issue; science journals and medical texts often offer the most current information. I found many articles published by the National Institute of Health in their effort to share information as part of their report on activities and research.  In their article, “Marijuana and Cannabinoids”, the NIH explores the connection and statistics given in 2015 regarding what is known.  Currently, there are three classes of cannabinoids undergoing research as to the implications on management of pain for various conditions and disorders. In the year 2015 a total of $111 million dollars was spent to research funding regarding the use and properties of medical cannabis. A total of 49 projects currently underway are examining the therapeutic benefit of cannabinoids, with a total of $21 million dollars in funding provided in 2015. (“Marijuana and Cannabinoids”) Given these statistics and the vast amount of funds currently dedicated to solving these concerns I am left to conclude that there is enough encouraging evidence to support the use of cannabinoids as pain management tools.  So, why is there confusion? It appears to me that the research is being done, studies relating to neurobehavior and development are encouraging, and yet there remains a steady stream of vitriol against the idea of legalizing medical marijuana.

I found in a grant connected to this article that further studies are being conducted and about grant options available by the National Institute of Health that support the supposition that cannabis offers therapeutic benefit for chronic pain. According to the NIH, “Pain is a substantive health issue, where it is estimated that 100 million Americans suffer from chronic pain. Opioids have been increasingly used to treat chronic pain, and there has been an increase in the number of opiod prescriptions, which has caused a noncommitant rise in prescription opioid abuse. While opioids may be effective in treating chronic pain in some cases, other treatment options are desperately needed.” (“Developing the Therapeutic Potential”) I fall into this category and can offer real experiences of multiple opiates being used to mitigate pain and induce a sedative effect, allowing my body to recover and heal. Following the acute phase of my trauma I then had to find an alternative way to cope with the pain, more than a year later, multiple appointments, and alternative pain management options continue to leave me coping with daily pain. The problem of living with chronic pain has far reaching effects, leaving no part of a person’s life untouched. Additionally, side effects such as addiction and dependence occur with prescription medications at an increasing rate for patients. In recognition of the need for help and support of patients, multiple agencies have joined together to pursue options and share findings; agencies such as the National Institute on Drug Abuse, the National Cancer Institute, the National institute of Neurological Disorders and Stroke and many others (“Developing the Therapeutic Potential”). Specifically, research is being reviewed for study in areas of inflammation and pain. Review is set to evaluate therapeutic applications of cannabidoils in the specific areas of chemotherapy induced peripheral neuropathy, pain perception and general analgesia (“Developing the Therapeutic Potential”).  What the grant opportunities demonstrate is that multiple support agencies recognize the need for non-synthetic options that integrate well with the central and peripheral nervous system. Current pharmacological options are not meeting the need and are creating additional problems for patients and society in general. Patients need and deserve answers and options that do not create side effects such as addiction and dependence.

The Drug Enforcement Agency, or DEA, recently made some remarks concerning the legal status of medical marijuana. In a report they refused to alter the federal legal status of marijuana.  Studies cited by the DEA, as recently as August 2016, maintain that marijuana is a Schedule 1 drug. (Leger) Schedule 1 drugs are drugs that offer no verifiable medical properties and are thus considered to be used for recreational purposes only. In the same release of information the DEA indicates it has found that marijuana cannot truly be considered a “gateway drug” (Leger).  A gateway drug is one that leads to further experimentation and use of additional substances by the user. Going by what the DEA claims I am left to conclude that they have no evidentiary support to change the legal status of medical cannabidoils and until substantive research findings are produced to dispute that claim, there will be no change in the federal status of marijuana. Currently any use of cannabis is illegal, despite individual states making its use pharmacologically approved. Federal law trumps individual state mandate. The DEA makes allowances here and does not pursue prosecution of medical users, despite having the law on their side to do so. This ambivalent stance is confusing and leaves patients at a loss for where to go and what to do. After reviewing the statements made by the DEA I am left feeling like I have whiplash. On one side they refuse to recognize potential therapeutic benefit, on the other they refuse to pursue enforcing the laws that are in place to regulate the use of illicit drugs.  There has been no indication of a timeline or what may cause them to reconsider either the Schedule 1 classification or pursuit of prosecution for users. What has been created here is an unenforced law, one that weakens the status and value of the DEA in their unwillingness to make a decision about this issue.  I wondered what reasoning may be contributing to the position of the DEA; I turned to the FDA, the Food and Drug Administration.

In April of 2016 Bertha Madras, an expert in the field of medical pharmacology and biology, helped to clarify the position of medical cannabis and the FDA, or Food and Drug Administration.   Madras clearly explains that according to the definition and requirements of pharmacological drugs, cannabis simply does not fit the profile for medicine (Madras).  The FDA holds to five primary requirements for a drug. Those requirements include:

1.      Drug chemistry that is known, consistent, and replicable.

2.      Adequate safety studies have been conducted and reviewed.

3.      Sufficient number of controlled studies documenting measurable value.

4.      It must gain acceptance by qualified experts.

5.      Evidence and documentation must be widely available.  

Looking at the requirements for the FDA it then becomes easy to see why cannabidoils have not yet gained recognition from a legal standing as medicine (Madras). Like any flowering plant, cannabis plants and buds all produce differently in relation to potency, chemistry, and even vary by plant type. The NIH is currently working to address the need for testing and safety studies even while it works to distill and refine various cannabidoils such as THC and CBD. Acting to refine the oils acts to make effort to profile consistent chemistry and determine value to the oils themselves. After this process is refined and completed then concerns such as dosage and potency can be addressed and medical trials can begin. Increasing use of studies and grants will either prove or disprove that medical cannabis is an option for patients. 

Continued testing and refinement of the process is needed to help patients and provide safe medical supervision.  I found that in June 24, 2015, Dr. Nora Volkow testified before the Senate regarding International Narcotics Control. In her report she reviewed the limits and challenges of conducting medical research, potential outcomes and promising studies, and also reviewed what is currently being done to address the needs of patients. At that time, studies on specific neurological conditions offer glimmers of hope but have yet to offer substantive proof that marijuana has therapeutic properties (“Testimony of Nora D. Volkow”). Dr. Volkow went on to further explain that while some preliminary studies have been done into various cannabidoils, specific oils seem to be the key in treating chronic pain. The emerging research supports two emerging oils that relate the most to therapeutic benefit, CBD oil and THC. THC is the cannabidoil that contributes to the hallucinogenic effects, the “high” of marijuana use.  The CBD oil is being used currently as a plant extract base by some patients for regulation of seizures and other neurological trauma. Because it has no hallucinogenic effects, CBD oil is not illegal, nor is its use regulated. Studies into the effectiveness of CBD oil with chronic pain, however, are not promising. There has been no indication, to date, that CBD oil without THC offers any analgesic therapeutic benefit. There have been preliminary studies that demonstrate that THC and CBD oil, when used together, offer an analgesic effect for central and peripheral neuropathic pain (“Testimony of Nora D. Valkov”).  Peripheral neuropathy is a potential side effect of neurotrauma and surgery. Therefore a patient can survive and recover from a violent or traumatic injury such as concussion or brain tumor only to have the nervous system flare up. No known trigger, no known cure. The sensory nerves of the body simply fire as if they have been activated by some unknown trauma. I looked into providers. Who is using cannabidoils with patients?

With an excellent reputation for patient care and breakthrough treatment, The Mayo Clinic has forwarded studies into the use of medical marijuana and patient care. In a web article the Mayo Clinic outlines some of what they are doing for patients to fight the battle of peripheral neuropathy and other chronic pain conditions experienced by patients (“Medical Marijuana”).  Cannabidoils are seeing accepted use with patients experiencing such complications as seizure disorders, Amytropic Lateral  Sclerosis (ALS), and even chronic pain. According to the Mayo Clinic “Medical marijuana is marijuana used to treat disease or relieve symptoms. Marijuana is made from the dried leaved and buds of the cannabis sativa plant. It can be smoked, inhaled, or ingested in food or tea. Medical marijuana is also available as a pill or oil.” (“Medical Marijuana”).  Providers are reaching past recognized legal structure to provide patient care. A medical provider, seen as an authority in patient care and treatment, is using an unrecognized form of treatment for patients even while the regulating authorities refuse to make changes in classification and legal standing. 

Further supporting the idea that providers are moving beyond legal boundaries is the research being done in behalf of the National Cancer Institute. Working with complementary and adjunctive medicine, studies are being conducted into the use of cannabis and its impact on the side effects of cancer related treatment. Use of THC and CBD are showing a positive impact for patients experiencing such complications as loss of appetite, pain, and depression while undergoing chemotherapy (“Cannabis and Cannabinoids”). Along with alternative therapies such as massage and acupuncture, treatment of side effects with cannabis is currently being used to help patients in recovery. Initial findings support the idea that, working through the central nervous system and immune system, cannabidoil is able to have a therapeutic effect upon the body. Since these systems are both largely affected in cancer treatment, the benefits demonstrated to patients indicate that cannabis is effective in treatment (“Cannabis and Cannabinoids”).

What can I conclude based upon all the documentation and research being performed? What am I able to determine since recognized medical authorities are using medical cannabis in treatment and recovery, despite the legal status being one of a controlled Schedule 1 drug? Can medical marijuana be an option for patients who suffer from chronic pain? Maybe. The answer is, maybe. That is all that research and information can tell us at this time. Indications are enough to continue to fund research and development of dosage amounts and efficacy studies. Regulating agencies continue to be hesitant to change legal status due to lack of safety studies and sufficient data. Patients and providers are required to go outside recognized medical models because the options, opiates and NSAIDS, simply do not meet the needs of patients. In thinking about my own experiences and the possible implications, I am willing to consider the options and will simply give it more time. Medical providers and researchers are doing their best to find answers, patients are doing their best to live and function, and regulating agencies are making efforts to be good stewards in protecting the public. Patience and empathy are required as everyone works to do their best in finding answers. 

Resources:

“Developing the Therapeutic Potential of the Endocannabidoil System for Pain Treatment. PA-15-188.” NIH, Office of Extramural Research.  www.grants.nih.gov/grants/guide/pa-files/PA-15-188.html . Web. November 2016.

Leger, Donna Leinwand. “Marijuana to remain illegal under federal law, DEA says.” USA Today. August 11, 2016. www.usatoday.com/story/news/2016/08/11

Madras, Bertha. “5 Reasons Marijuana is not Medicine.” The Washington Post. April 29, 2016. www.washingtonpost.com/news/in-theory/wp/2016/04/29/5-reasons-marijuana-is-not-medicine. Web. November 2016.

 “Marijuana and Cannabinoids.” NIH, National Institute of Health.  www.drugabuse.gov/drugs-abuse/marijuana/nih-research-marijuana-cannabinoids. Web. November 2016.

 “Medical Marijuana.” Mayo Clinic. Healthy Lifestyle Consumer health. http://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/medical-marijuana/art-20137855. November 2016.

 “Testimony of Nora D. Volkow on Cannabidoil Barriers to Research and Potential Medical Benefits Before Senate Caucus on International Narcotics Control.” NIH, National Institute of Health.  http://www.hhs.gov/about/agencies/asl/testimony/2015-06/cannabidiol-barriers-to-research-and-potential-medical-benefits/index.html. Web. November 2016.

“Cannabis and Cannabinoids- Health Professionals Version.” NIH: National Cancer Institute. http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/medical-marijuana-and-cannabinoids/ Web. November 2016.