Thinking and healing

Whether you want to believe it or not, your thoughts have power. Some believe immense power. When facing illness and disease, it is easy to become trapped in the defensive, negative, and avoidant. In fact few would blame you if that was the case.  I found this today,  have seen it before, but it brought new perspective with what I have experienced in the past six months. Yes, today is my six month craniversary.

http://www.spiritscienceandmetaphysics.com/proof-that-our-thoughts-effect-physical-matter/

So, for fun, your thoughts have power to affect you physically. Not only you, but the world around you. Work through the trauma, stress, and fear so that you can also feel the love, joy and gratitude. What a beautiful world.

God bless and keep you.

Medical Marijuana

I was asked by one of my team a few weeks ago to look into the applications of medical marijuana, specifically the hemp seed (which has no THC) on tumor reduction and brain function. I have spoken to two other members of my team; both have encouraged a discussion with my neurologist. That's three of five.

This threw me for a complete loop as I tried to wrap my head around it before even trying to do any research, this is very slow for me.  You want me to ask my neurologist about what?

After weeks of digging through online files and trying to find my way past all the pothead culture, I have found a few articles that may help. In addition there is some exciting research into synthesized medications that may be able to address inoperable meningioma. (I will post more as I learn more.) Here are the (very) few articles I was able to find that have anything intelligent and reputable to say.

This article is on cancer but many of the same principles of treatment apply to brain tumor treatment. http://abcnews.go.com/Health/toddler-cancer-takes-cannabis-oil/story?id=15981324

Huffpost followed up on a documented story of recovery. http://www.huffingtonpost.com/2012/12/01/cannabis-for-infants-brai_n_2224898.html

This is the article written prior to the Huffpost article on the same story. http://jeffreydachmd.com/2014/04/cannabis-oil-brain-tumor-remission-jeffrey-dach-md/

As you can see there is not much to find that is not from sites that promote pot culture; what there is to find is both intriguing and challenging. If there is a natural solution that makes use of the bodies own T-cells to combat inoperable tumors, why are we waiting to begin trials? For many with inoperable tumors there is nothing to lose, but everyday they lose a little more of themselves until the brain can no longer function. The medical field would be so excited if a synthetically produced drug was able to achieve similar results. This is both hard and frustrating to navigate as a brain tumor survivor.

One day at a time, I tell myself. There is hope. That is the future and I am here to live in the present. I can do this. God bless.

Thanks

Its been almost six months since my anxious ride to the hospital where I had emergency brain surgery to remove my tumor. Milestones and timelines have a way of comparing events side by side; when that happens we are forced to take a hard look at where we are vs. how we were. I am overwhelmed with gratitude at what I have and what I have learned.

You can do anything. God gives us nothing to deal with that we cannot handle; but we must involve Him. With Him we can do anything.
Small moments hold great joy. There are still bad days but they are outweighed by the small moments. Moments of joy and simplicity that I skipped over before, never imagining their importance. So, hold your kids, hug your parents, and stay close to your friends because they are the joy of your life.
Take out the trash. It is ok to eliminate negativity from your life; you don't need it and life is too short to waste on people and things that don't really matter. No one said when dying that they wished they had spent more time at work.
You matter. Taking joy in simple things builds the hope you need to keep moving forward. If you love to sing, do it. If you love comic books, read them. If you like playing on the swings at the park, then swing your heart away. Life is just too short to not do the things you love.
It is ok to say, "Not now." Sometimes you allow guilt and other negative emotions to steal your joy, not because of your expectations but in a futile push to meet someone else's, let it go. You will never be enough or do enough for some people, give yourself permission to let go of trying to meet their needs.
Forgive. Everyday forgive. You never really know when your last moment is with someone and it is not necessary to hold onto hurt or anger. If you ask, He will provide you the help and support you need to move forward in strength and emotional health.

I have been so blessed this year. I am so grateful for the many opportunities everyday to learn and grow. God is good. May He bless and keep you.

 

Goals and Plans

The holidays come to us with joy and frenzy. Dealing with brain trauma/injury on top of that can easily send us over the top. We become fatigued and stressed by events that in the past we simply took for granted. Planning and priorities take the place of frenzied activity. This is not a bad thing. Paraphrasing advice on goal setting from Dennis Bonner, Ph.D. I have come up with the following guidelines.

 

1. Determine your long range goal. For me this year it is simply to spend quality time reinforcing traditions and connecting emotionally with my loved ones. That is a broad goal that can be overwhelming if I tried to do it all now. So, break it up into small do-able pieces. Each week try to have one emotionally honest moment with a loved one. Determine which holiday activities are important to continue this year, let go of the rest. Santa, for us that is a must. Looking at lights, another must. Caroling, not necessary. Sit down with your family and determine family goals and determine an order of importance, you may find that little is actually irreplaceable.
2. Set goals that stretch but do not overwhelm. You know your limits best, be honest about them. I am going to the opening day of Star Wars. This will stretch my abilities but I have support systems in place and plans such as headphones and polarized glasses if it becomes overwhelming. The actual event of sitting with my family to experience that together, it's worth planning for.
3. Set a simple schedule based on your priority list. Be honest with yourself. I can handle one simple hour long event per day; this means that I have an exit strategy if I get overwhelmed and as explained above, ways to help me regulate when overwhelmed. Be flexible. My speech pathologist reminds me to set my schedules in Jello- be open to change and ask your loved ones to support you in this.
4. Have reward and rest periods. You made it through your kids school concert with lots of people, sounds, and light- you have all earned an ice cream date. Enjoy.
5. Revise- it is ok to evaluate and revise your plans based on your real capabilities. What is not done now will happen again in the future, the thing to remember is "yet". You are simply not ready for that, yet.
6. Write it down. I keep a monthly and daily schedule. Both help me stay on track. You can no longer trust your memory, so take a notepad or method of recording appointments and activities with you. I even have my medication dosage times programmed with a reminder ring into my phone.
7. When writing goals be personal and proactive. Create the reality you wish to have. Begin with "I". Use emotional and action words to embrace the change and your reality in the change. Examples can be "I love walking every morning."  or "I feel amazing after my physical therapy stretches."
8. Put the goal where you can see it everyday. Right now I have motivation statements posted in my home. In addition to pictures of my loved ones reminding me what I am working for, I have the following statement posted where I see it multiple times per day: "Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight--"

You can make it through the holidays after brain injury and surgery with amazing moments and experiences of love and caring. Take time, plan for it, and be easy on yourself. You can do this. It may not be yet, but it will be again. You've got this. God bless and keep you.

On Disability

"Me having a disability is nothing for you to feel sorry about."

Powerful statement, and true. I believe that living with a disability is less painful that the thought of living with a disability. It is your life, and so you deal with it. some days are hard and some things suck, but in here, inside I am still myself. That is not gone. The above quote is from an amazing article put out by The Mighty. It speaks to all disability, the seen and the unseen. Please enjoy.

The Mighty: Statements on Disability

Holiday Suggestions; Don't be Clark

As you are recovering and healing I have found any number of things that help. I can implement a few. with the holidays coming it has become necessary, at times, to set some clear expectations and guidelines. It helps keep me from becoming overwhelmed and enjoying the holiday.


First, if you are familiar with the movie Christmas vacation with Chevy Chase, don't be Clark. Don't imagine and create such high expectations of yourself and others that you are destined to be disappointed. Instead be clear about what really matters, narrow it down, and focus on the people not the activities or gifts. Below is a letter I sent to my planned guests this year, I hope this helps as you head into holiday season.

"I want to be clear and open about my anxiety over our upcoming visit.  I also hope to create a space of clear expectations so that this visit is positive and family based.  I do everything I can in a day.  It is enough to keep things running but any more sets me back.  Here are some thoughts that may help. 1. My impulse is still to overwork; sticking to my schedule makes sure I use my rest times.  I cannot function without rest times.  I have them set up to use as I require. I  know when and how to address stressors as they occur in a way that works for me.  2. Rest times are periods where I mentally withdraw to regroup. If I perceive a threat or pressure, that time takes significantly longer than normal. 3.  I plan everything in advance; my week, my day, my meals.  I still cannot handle changes to my scheduled plans.  If there is a necessary change I need additional time to process and regroup. 4.  I am as active as I can be and the boys are adapting well. Pushing because it is the holidays will result in a shut down.  I am getting things ready now to help reduce the occurrence of such an event. 5.  I can't handle criticisms or suggestions.  If something is safety related or a true emergency lets handle it.  If not, it really doesn't matter enough.  The stress will cause more harm than the benefit of any changes. 6. I have found that both the kids and I require down time each day.  Unstructured rest time that we use to recharge.  It is not good for me and I have found it is not good for the kids to be busy or entertained all the time.  I think if we keep things in mind we can make this a great visit. Thank you!"

 

The response from my family was wonderful and helped to address my anxiety and fears. If your family and friends cannot support your limits, it is ok to make plans to see them at another time, outside of the holidays. If you both work to be clear, open, and flexible, the memories you make will hold you through the coming year.

 

God Bless and keep you. You are His, always.

 

The Point

It hurts. Looking around and knowing that so much has changed from last year. I worry that I just spend my time complaining, but I am grateful. I hurt sometimes and this seems to conflict with a deep sense of gratitude. The two realities are not exclusive of one another.

I see posts from other survivors talking about returning to work, going on vacations, and learning to live again. I have so many restrictions still, that its really hard to accept. We, the survivors, each have such diverse experiences and effects that it must be so challenging to be a neurologist. "What can I expect?" we ask. The term possible side effects has become my life. In my discharge and post surgery I was told to expect any of a number of changes; memory, cognition, nerve damage that can result in vision, hearing, or speech problems, facial palsy or paralysis, the list goes on. Medications that address damage and healing present with their own list of challenges; changes in sleep, diet, mood, personality. You can be completely unrecognizable to yourself and others.

If you don't recognize yourself, then what is the point? What is the purpose of a life that can't be lived?

That then is the point. To live. To find a way past the surviving, the existence, to a life that is worth it. A life that holds its own value, separate from the false sense of value experienced before.

 

I thought my life was always about what I did for others. When put in a position where I could do no more of that, how do I still have value? What then is my purpose?

Turning to God for an answer,  my purpose is simple,  to have joy. To be joyful. To experience  the pinnacle of happiness, of growth, of continued progression where my value is intrinsic within my existence. What beauty if this is the lesson God wishes for us. We exist to become His joy. We exist for nothing we do, nothing we are more than ourselves. We are enough. In this world of busy distraction and not measuring up, we are enough simply because we are. Not because of what we do or don't do, but because we are His.

Tragedies of lost life, those are not the tragedy. The true grief comes from not knowing ourselves. Not knowing our value. Not understanding our place in His plan. We are all connected through Him. Past color, creed, and religious persuasion- He is there. Waiting. Waiting for us to finally see the point. The point that encompasses us all and allows us to reach each others spirits. For those who have lost loved ones, I grieve for you. When you are ready, look to Him, and He can help you find your joy again.

We are all connected, each loss affects us all. Whether from cancer, natural disaster, or the actions of another person, the loss of one is a loss to us all. I am so sorry for your pain and sorrow.

Jubilee

Waiting for emergency surgery was terrifying. In coping with all the changes the cosplay community here helped me cope by creating two looks incorporating scars and short hair. Jubilee from X-Men was one look.

Working with my friend with WicKed Photography, we have achieved our pictures. Please enjoy. And from the name Jubilee take from that joy, love, and happiness at another opportunity to live.

Jenafer's Jubilee

Being Immature

Some days you just need to let go. Be silly. Do something new. Something that you can't compare to "before". Something outside of yourself and your comfort zone. In doing so you can experience new freedom and find bits of yourself floating around in the ether. "Oh, there I am."

I exist separate and apart from what happens to me. This body, this brain, are damaged. They don't work right. I make simple and silly mistakes that I am learning to laugh at.

• Forgot to add soap to the dishwasher. Oh, well. The cups were upside down anyway.
• Things left in random places become a game of hide and seek.
• Stuttering and forgotten words can become a game of charades.

It works. Breathe, relax, and set time to do something fun. Something that nurtures your soul and has no pressure, no expectation. Give yourself permission to be immature, your brain is. So, let it be what it is. Be you. And enjoy the freedom of learning who you are now with no comparison. Just accept.


My Rules of Immaturity:

1. Don't be in charge. Assign a loved one or friend to make sure everyone is together. They can take over the thinking and you can experience. It's like having a designated driver, only you will have a designated adult.
2. Have a plan. A destination and a goal. Make sure everyone is on the same page. You will become distressed if things change or someone changes things. If that happens allow space to realign your thoughts and breathe through it.
3. Keep the time short. Don't expect too much of yourself. New events are more fatiguing than familiar events and places.
4. Touchstones. Have familiar things to keep you grounded. Comfortable clothes, soft materials. I have a wrap that goes everywhere. It like a comfort blanket. It helps me feel safe and the material is soft and helps me to connect if I become distressed.
5. If it's not fun, stop. If your activity is stressful or upsetting don't continue doing it. Have a plan to reconnect if things become too much. Make sure your advocate, the designated adult, understands your signs of distress and that they are prepared to leave at any time.

Have fun learning who you are now. In some ways, I like myself so much more now. Accept and be open to what you can discover and you may just discover some past parts of yourself in the process. God bless, you've got this.

 

Try Again

Some days you try so hard to do the right things for the right reason, and everything just falls apart. I am so grateful to be involved in a culture where you can go to bed, get up, and simply try again.

My boys made it through less than 20 minutes of church today. I was simply too tired to keep going, so I took them home. Yup, so not happening today. This does not mean that we wont get up and try again next week. We will. We will get up and do it all again because some day, we will sit thru church and it will be good. Some day they will understand why we go. Some day they will know to listen to the spirit of God speak to their heart and will know to follow His guidance.

Some day was not today. I can accept that.

Let go of what was, move forward into what now is. So many lessons this morning on just getting up and trying again.

Life Goes On

It is so easy to become stuck and trapped in rehabilitation, in recovery, in healing. My world has changed, but everything else keeps moving along. With all the medical appointments, follow-up, and care I receive it is reasonably easy to forget that preventive care still needs to happen.

When dealing with trauma it is important to also keep up with things like immunizations, dental care, and yearly physical exams. Try to keep a calendar for yourself; my yearly exam always falls around my birthday. this works to make it an easy reminder. If your provider has email or text notification of preventive visits, use it. They can keep track and you can live the life that you have.

I got a wisdom tooth pulled today, yup I still had them. They didn't create a problem for me until this past week, which is pretty cool. Before brain surgery I believe I would have been freaking out completely. After brain surgery, there was only a mild freak out with a kind of let down after it was all over. This was way doable. My perception of a traumatic event has completely shifted.

A few shots of Novocain, a clamp and forceps, a quick tug and done. No muss no fuss. Some extra gauze as I was leaving.

After a nap I realized that its not too bad. A few Tylenol and I'm good. A little swollen, a little sore, nothing unmanageable.

So, remember when your life is in crisis- keep up with the simple stuff. Things keep moving. Life keeps going. Its OK to address the immediate need, but keep planning and moving forward. It helps keep you on track.

Retreat, Recover, and Re-engage.

Sometimes you go along, struggling just to keep your head above water. Treading carefully, praying you don't go down for the third time.

A friend of mine is struggling with not wanting to do much; its cold, first snowfall, kids are sick. She just wants to rest and cuddle and is concerned she doesn't have the right to do so. This woman is amazing and very much a go getter. She works hard for and with her family. Why does she then feel guilty for taking a day to hold her kids and recover herself? The following is what I wish I could say to her.

I struggle so often with the need to do more than  I can. Following brain surgery it's a lot simpler to tell myself to chill and knock it off, but it wasn't always this way. I don't know how to tell you to change it, but this internal attitude and perception should change, and soon. Don't be in my situation where it takes a life threatening situation to learn that it is ok to retreat, recover, and re-engage.

I had a church leader say this in the most eloquent way I have ever heard, I love it.

So, what matters to you? What is really at the crux and center of your being? Who are you and what drives your passion? Do that. Do that and nothing else if that is all you can do. Add more as you can but take time to step back and re-evaluate. Is it working for you? Why or why not?

Always remember what one of my teachers said....

"We are human beings, not human doings."

Don't lose yourself in being busy. At the center of everything is this: You are a Child of God. You have divine nature (this deserves to be nourished with learning and meditation). Your family deserves to have you be present in each moment (this way you will find the little things that truly matter). God desires your happiness. You can do this.

God bless and keep you.

Dependence and Independence

So many things have changed. I used to drive around 500 miles per week; work, kids, home I did a lot. I volunteered at the school. I volunteered at church. I was involved in the community. Now a lot has changed.

I am the person that will push. I want to do and be and accomplish. I thrive on meeting my goals. I want to do more and prove you wrong. (See, I told you so.) It is sometimes where I excel. head trauma doesn't allow this. You push, your brain pushes back.

• Turning to fast? Nope, think again. You will fall flat on your face. Now your head is spinning and you cant even focus enough to interpret your vision so you close your eyes and breathe, a lot. Yup, the brain didn't like that one.

• Not enough sleep? No worries, you will be so brain dead that you won't even notice that you walked away while talking to someone. You won't be able to answer questions and phone calls will create physical pain.

• Too much sugar? Every muscle is on fire filled with inflammation and it races up your spine to settle in the tissue around the incision. No thank you. Not eating a lot of sugar.

Simple things, once taken for granted or not even considered. Who knew that looking at a beautiful sunset could become overwhelming? That listening to a long favorite band would create mental confusion and physical pain?

I depend on others for so much. I had to teach my kids how to call their dad if something happened to me like a fall. I have neighbors who check in with me. They can pick up my son from school when I can't, when I'm unable or overwhelmed. My husband helps talk me through my day each night. He's available by phone or text if I need him during the day. I'm prepared and ready with everything written on a dry erase board. Did the kids make their bed? Am I running a load of laundry? Were there any concerns or activities I need to address? Rehab? Therapy?

From everything I have seen and read, I have the best support team. I have an amazing circle of friends and family that are present without pushing. With confidence I can step out and try. Try new or different things. We have developed a phrase. "Well, it looks like I can't do that yet."

The idea being that I will, someday. That I will continue to build onto skills and learn how my brain works now. I will be able to integrate emotion and have some logic, somewhere. The need to be capable is still there. I need to know I can do things, if necessary. So, we built a plan and work it together. My team communicates and coordinates my care. My husband and family coordinate my needs and balance them with my need to be independent.

Here are some things we have found help me feel strong and capable.

1. I have a small family owned grocery nearby. They know me. I can walk to it and pick up milk if we run out.
2. The dentist is also aware of our situation and is close enough to walk to. It is easy to arrange a ride If I need one. They have my husbands number on file in case of emergency.
3. My doctor and the urgent care are within walking distance. We transferred the kids files so that if one child is sick I can see to their needs within my realm of ability.
4. My local church group has helped me be aware of needs and accepts that I reach out when I can; brownies, a hug, these are things I can do.
5. I have a monthly, weekly, and daily calendar. I review them each 2-3 times per day and have time set aside to prepare the next weeks plan.
6. I have an online support group of women; we are working on "Big Ass Hairy Goals". Huge things for us that with support and accountability we can accomplish. We want to make change and we support each other fully on that journey. Reaching across the internet they share humor and light at times when I am struggling.
7. I have "projects" simple things that keep me focused on making progress and finding hope in the future.

When you are depend on others for so much, it is important to claim your independence where you can. God does not want robots. He does not desire automatons. He desires our allegiance and love. I believe, He loves every quirky thing about me. We are dependent on Him, but He also desires us to develop as individuals. To reach our potential. God desires us to depend and trust from a place of strength and ability. Isn't that what we want for our loved ones?

God bless and keep you in His loving care.

 

 

"You want me to ask my neurologist about what?"

New definition needed for the term "pot head."

It was recommended by one of my support team recently that I look into the benefits of medical marijuana and speak to my neurologist about the efficacy of it in relation to the side effects I am experiencing post surgery. In speaking to other members of my team they suggested I look into it and ask, it may help.

There are many concerns that I have. One of which is the "pot head" culture that has used this herb as a recreational tool. It is difficult to find any well written and well-researched information. Almost none of it is done in the United States. We instead rely on studies in the UK and Canada. They are more open to looking at the results and not worrying about the source of the cure.

It has been a difficult journey but I wanted to share what I have found and offer it as a discussion tool, simply as a way to help other brain tumor survivors. It is a challenge and many of us are willing to try anything that helps us to reclaim our lives.

In the United States:

http://www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq/#link/_13

In Australia:

http://wiki.cancer.org.au/policy/Position_statement_-_Medical_use_of_cannabis

In the United Kingdom:

http://www.parliament.the-stationery-office.co.uk/pa/ld199798/ldselect/ldsctech/151/15106.htm

And lastly Canada, eh?

https://www.cancer.ca/en/about-us/news/national/2013/canadian-cancer-society-perspective-on-hemp-and-cannabis-products/?region=bc

None of these countries "recommends" it on the basis that studies are even now underway. They want more evidence to support it. What do people do who are waiting for something that can help the fog, the dumb, the fatigue, and dietary changes? When we are looking for answers I'm not going to trust the guy running the head shop down the street. If it could really help. If the oil from a seed could help me live my life, why can't I find anything on it? Nothing reputable, maybe it's just the waiting game. Something needs to be done. With the numbers of people who suffer from brain tumors and cancer in general, we need to fund the research that can look at real cures, real solutions, not killing the body to destroy the disease. I want answers, and there aren't any, yet.

This is never a position I imagined myself to be in, but at the same time, I never imagined surviving a large brain tumor either. God has had His hand in all of this, I need to slow down and trust. The answers will come as they must. I will push when I need to, but I can leave this here for now. He is in control and is working o guide me through this path. I can do all things in Him who strengthens me. God bless and keep you, I hope this helps.

I Am OK (and that is ok)

More of the same.

There it is, the sameness. Not a lot of huge progress. But, then again I guess huge improvement is not to be expected any more.

Confidence is improving, my audiology appointment was key to understanding my sound sensitivity. It didn't change things, but having answers as to why it happens, helps me cope. Going places, large, loud, or filled with people is exhaustive. It terrifies me. My anxiety reaches sky high levels and my mind overworks in an effort to predict and cope with any changes. Yoga and mindfulness have huge benefits to address the heightened state and help build management tools that I can use to regulate. The extra effort, however, is fatiguing.

My physical dexterity has shown some improvement. The confidence helps me move in my restricted sphere more easily, but my neuroplasticity is not improving. I've pretty much settled. This is it. No surprises. No changes. I have even been able to identify my precursors to brain numbness.

There is an order to the warning signs my mind sends. First is an electrical shock firing in the tissue of the overworked portion of my brain. It's attention getting and will get worse if I do not change things immediately. I begin to lose physical fluidity, I stumble and lose my place spatially. Next is a stuttering or disjointed speech. If not addressed it becomes a point of numbness in which I hear and see things but cannot interpret them. I see shapes and colors but could not describe them later if asked. I tell my husband later that I had "the dumb". In the most literal sense this is completely true. I was dumb. I could not speak. Could not engage. If he takes my hand I can follow him but I cannot answer any questions. At times I have had questions asked at this point and helpless sobbing is often the response. I don't know, anything. I don't know my own name when this happens. I am functioning at a very basic level. I breathe, I blink, my heart beats.

Identifying my pattern of mental shutdown helps as I can estimate times and let my support know when and if I need to reset and re-engage. Sometimes you are helpless to change or prevent things, but I do what I can. That's all any of us can do.

God is good. I continue to feel His love and direction. I Am OK. I can accept that. God bless and keep you.