The Morning After…Helthcare??????

They did it. They really did it.
I want no advice or remedies. I just want to be heard.
If you could even find the fragments of my strength, they would be scattered and crushed. My heart has found a place in my throat and in my stomach. My eyes are crimson with tears.
I have, many of you know this, cancer, a cancer syndrome, neurological problems, intractable pain. Any one of these could kill me. Last night the so called leaders of this nation decided people like me can die. I will not call it anything else. I am not just expendable, I am a burden. One, not of my choosing. Laws said the bank I worked for, one of those “to big to fail”, could demand I apply for Social Security and Medicare, even after years of paying for disability and keeping health insurance. And now they have decided in double speak, that since I have a preexising condition, in a few years they can revoke it or send me into bankruptcy.

I am a liability. Never mind that accounting has nothing to do with math, real worth, or contributions not measured on a balance sheet. I fall on the wrong side of a ledger. I simply am no longer quite human.
I can’t go to my carcinoid groups today. I can’t face the fear of so many. I am wracked and wrecked with despair and a rage that has filled me with the an emptiness beyond being in a void. I want to physically lash out, I want to hurt something. I want relief. I want to be told I either matter, or have the fucking guts to give me a law to let me stop my medications and die. That is what they want after all. I want to stop the bullshit of prolife that only means pro fetus. After all , I am a 58 year old woman, which makes me in this world …invisible. An invisible nuisance. And the rage in me is building.
I give up. I just give up. I don’t know if my tears will ever end, for me, for my other cancer friends, others with chronic yet possibly fatal disease. A clock was started with this so called “healthcare bill”. That clock, sounds like a count down to the end of me.
So, I surrender, I give up.
I pray that a sudden devastating illness never comes to anyone. In America, when a chronic or serious illness comes, no insurance pays for everything. You will find that no matter your savings, no matter your income, bankruptcy always looms near. For many people they are one paycheck away from complete financial devastation. Unsure if your illness will allow you to keep working. Baffled at how much will fall apart no matter how careful you were to get all the right insurance. Truth is my parents had better insurance than I do or can even have.
To those who wanted this, I pray they never feel the full weight of what they have wrought. Because karma is truly a bitch.
Bridget

The Longest Night…

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I am a child of Winter.

Literally.

I was the second child in my family born on December 25.

My mother had years of traditions that placed Santa Claus on Christmas Eve and two birthday cakes with separate birthday presents on Christmas morning.

Yet, what I honor and love is the longest night of the year, the Blessed Winter Solstice

My time was spent at a grandmothers home tucked into a tiny town in the Wisconsin countryside

Resting on the shores of a beloved lake, usually semi frozen

Water in any form is my element.

We were far from artificial light that dims the night sky and stars from view. I could see them all on a clear night.

Cold with sometimes fallen snow, I simply was bundled to stay outside on this treasured night.

If cloudy, my love and awe were not dampened.

I have cherished this dark all of my life.

Others will celebrate a birth tonight,

I start that tomorrow, revering both Mother and child.

This is my tradition.

I claim it as only my own.

I light no candles.

No fires are burned.

Know this night on its own terms. It needs no illumination. That time will come soon enough.

If I must , I speak only in whispers.

Better to hear the silence.

No rush, no hurry, just being enveloped by that which is wrongly declared hostile.

This is my home.

Give me a north wind with many long winter nights.

I will relish them until I no longer exist.

For in this night, in this darkness, a hibernation of the senses,

I meet my soul from a time I have yet to know.

She is old, wearing life on her face,

always fierce, sometimes stark,

I love her deeply.

She can be found here, on this, the longest night.

Blessings to all
Bridget Robertson

 

 

Just For Today

 

 

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Just for today it will have to be enough.

Just for today every bird will be a flock.

Just for today every leaf that refused to change color dropped to fall.

Just for today a lake will have to be my ocean.

Just for today the repeating lyrics and music of “On And On It Goes” * will cry and hope me through.

Just for today that song is my life metaphor.

Just for today each moment will be painted with conflicting colors of dreams and despair.

Just for today my language may be of sorrow.

Just for today It will be mixed with promises of journeys and joys yet to be taken.

Just for today confusion is my companion.

Just for today death’s call may find a way to tempt my soul.

Just for today I refuse death once more.

Just for today I am wary and angry at the endless pain.

Just for today I will tolerate and accept bone chill.

Just for today I will stand in my wasteland once more.

Just for today I will turn my insides out begging to undo an eternal knot.

Just for today the loneliness encircling me will be allowed.

Just for today I will count each person I love.

Just for today all my fears may inhabit me.

I will add them to Carcinoids, nerve damage, burst discs, dystonia, fibromyalgia and a new, stronger pain with growths not explained by any known condition.

Because come tomorrow…..

In what must be a cosmic joke

held at bay

I will add another oncologist for “sarcoma”.

Life is terminal, cancer may not be my final call.

I will wait until every test is finished.

Diagnosis has been wrong before.

A million things could happen.

In my deepest heart,

Just for today,

Just for all my days,

On and on I will go.

Blessings
Bridget Robertson
*

On And On It Goes.
Mary Chapin Carpenter

“The Calling” Album 2007

Mary Chapin Carpenter, Matt Rollings – producers
Chuck Ainlay – engineer, mixing
Scott Kidd – engineer
Bob Ludwig – mastering

 

Rarest of Them All.

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I’ve been having a rough patch. I was frustrated. I found empathy…….

This all began two weeks ago. There have been several visits to the ER, tachycardia and blood pressure swings. I had another allergic reaction to a new medication. I suddenly got new lumps all over my left forearm. The primary care doctor could not identify the lumps. I need a new oncologist, cardiologist and we are still on the hunt for an oral surgeon and dentures. On and on it goes.

My husband and I really tried to get appointments set up. He took two days off of work . There is no way to hurry offices that tell you it may take up to 48 hours to return messages. Then if one insists they don’t have correct information to send your records…..it takes much longer to get appointments, even with two people making calls and follow ups. Serious health problems or not, clinics, hospitals, doctors and the medical system works at what can be an excruciatingly slow pace.

The one appointment we were able to make was with another cardiologist. I have lost count to tell you which number he would be, fourth I think. My second cardiologist did an echocardiogram several months ago. He wanted me to have an angioplasty, a highly invasive procedure. He also did not want to answer any questions I had as to why. He wouldn’t address my complicated medical problems, like the NETCarcinoid/Carcinoid Syndrome, which can have a heart problem cardiologists call Carcinoid Heart. Nor did he want to talk about my anaphylactic shock to blue contrast dye (iodine), neurological issues, tachycardia, blood pressure etc. I delivered a well deserved speech to him. He did manage to leave a somewhat negative remark on my chart. Oh, the kind that may allow an insurance company to deny payment. So, getting this second opinion was absolutely necessary. Still, after the last two weeks, I was less than grateful yesterday to be seeing another new doctor.

The new cardiologist started out to be golden. Any doctor who begins an appointment by stating his first obligation and responsibility is to “DO NO HARM” and then….and only then…to treat me….is a keeper. He went through every detail he could and rendered a very different opinion and option than any previous cardiologist. We agreed upon a non-invasive low risk procedure that would give 90-95% accuracy as to whether I have any real artery blockages. He doubts I do. His nurse did an extensive history and questioning of all my symptoms. (I adore nurses) He definitely believes I have never had a heart attack, silent or otherwise. He wishes his other patients had blood work with my low triglycerides, glucose, cholesterol, etc. It’s unusual when they give credit to your vegan diet like he did. He thinks my heart may have a somewhat lower than normal output of blood flow. It most likely has been that way since birth. After the test, he can finally answer my neurologist’s question about whether my heart is contributing to my debilitating fatigue. His guess at this point is that it does. He wants to fine tune one medication to help with my tachycardia, keep an eye on my low blood pressure and do annual echocardiograms to keep checking for Carcinoid Heart. ( Which I do not have at this time) This is great news. This was the first cardiologist who seemed to be on the ball. I felt relaxed and confident that FINALLY, I had a great cardiologist.

Then he gave me a perspective I really needed to hear and keep in mind.

When we made the appointment, his clinic flagged my NET Carcinoid/Carcinoid Syndrome to check if any of them had experience with it.

He said, “Our clinic In the Dallas/Fort Worth Metroplex, has about seventy five cardiologists. Not one of them has ever seen anyone with Carcinoids, except me. I need you to understand that my experience is with ONE patient for a very short time. My practice consists of Intervention Cardiology, meaning heart holes, procedures, bypasses, resections, valve replacements, murmurs, etc. That is how rare your illness is. It is also how rare finding DOCTOR’s who have seen, much less treated a patient with Carcinoids is. If you have complications, I am going to have to find another cardiologist and I don’t even know where to begin. I am always going to tell you what I don’t know. If it comes to needing an expert, I will do whatever is necessary to get you to the right cardiologist and you will probably have to travel somewhere else in the United States.”

His statement caught me off guard. Intellectually I have always known how rare my disease and actual experts are. I grumble about the lack of real ones all of the time. Yet, because I am living in the fourth largest metropolitan population of the United States, I was still expecting there to be at least a few cardiologists who are experienced “enough”. It was the first time I was given a number that impacted me. Expert doctors are very rare. Having a doctor state that truth to me, may be the rarest of them all. He was genuine. I was stunned at my lack of understanding for my caregivers challenges when they see me. I was moved to empathy and compassion for what I expect is the frustration amongst doctors and other health caregivers like him who want to help but have limited knowledge of my disease.

Yep, we are still getting records transferred. The new oncologist, she left a message, asking me to hang in there while this is getting sorted out. I still have lumps in my left arm. I still need an oral surgeon. For today, it’s gonna be fine. This is life. Nobody gets a smooth course no matter what they are dealing with. I did notice my primary care doctor, neurologist, my new oncologist and this cardiologist all have hired nurses in their offices. That alone is huge. Nurses are the first line of patient advocacy and care. They ask questions that doctors don’t always think about. They notice changes in patients that doctors often don’t. Every doctor I have that has hired a nurse points out how much better it has been for both them and the patients. I couldn’t agree more. I had an unexpected gift come through my email. A song, composed and written by a woman with NET Carcinoids. It is a tribute to her nurse who helped her through the very frightening aspects. It’s easy to get cynical. My new doctor and she reminded me, most people are doing the best they can.

So , thank you to all the rare doctors and nurses who treat us. A very special thanks to the rarest of them all, those who state their limitations and stay the course with us until we get what we need.

Blessings

Bridget Robertson

Please check out this song. If you like it, please vote for it. I received nothing for this other than a great song and album I bought for my extensive “Songs That Move Me” playlist.

http://songsforlife.org/hush-giovanna-imbesi/

This song can be bought on Amazon and iTunes.

Wrapping Up and Go On.

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This blog was a process. A process by definition is a “series” of actions or thoughts before coming to conclusion. I wrote this because:
1) We all have to face “experts” who for the most part are making decisions they believe are in our best interest. Sometimes we have to disagree with them and choose our own way.

2) I use to think it would be easy to let go of something if my life and well being might be in the balance. I can say that isn’t true. My reactions took me by surprise.

3) I’m pretty sure people will have a relatable experience who won’t write or speak about it.

I never really expect to go backwards. To be honest, when I wrote about losing my healthy status I knew there would be more losses. I never thought the ONE loss I regained, walking and standing, might be challenged.

Last spring I started walking again. My latest physical therapist helped me acquire my balance and alignment. Then she got me standing and walking for up ten minutes. It was the best thing that has happened to my physical body in a very long time. I’m not sure that I can fully communicate the ecstasy of more mobility. I still use my wheelchair in combination with my newly found self mobility. Being on my feet feels like freedom. While my herniated discs and nerve damage still cause pain, it was lessening. After more than a decade of only going to doctor appointments, tests and hospitals, I began going out with my husband and friends on weekends for drives, for stops in parks, going to women’s circles and realizing that I could create a life outside of the walls of my home.

It really wasn’t a big deal when it happened last Friday. I had a “fall”. People have them everyday. You can lose your footing, your balance, your bone strength, and down you go. It was my left knee that really hurt even though bruising was on my back and left thigh. That knee was the point of first impact and a clue, because it wasn’t a fall.

I’ve had many “drop attacks” since I was child. They are always unexpected and unsettling. Normally a “drop attack” is a “crumple” where I simply fall down, usually to my knees. My wrists, elbows or head takes the second impact. In my history, some have occurred when I was in motion. One was while climbing stairs. The attack brought me down backwards landing me on gravel. I remain conscious throughout the process.

Information on drop attacks is something of a hot mess. Some say if a drop attacks causes injury, it is to the knees, elbows, wrists, face and on a rare occasion to the head or neck. I’ve had worse. In part or in combination they may be a sudden loss of balance, muscle control, a seizure or a misfiring of the signals in the brain or nervous system. While I have heard some definitive explanations for them, others completely disagree. My conclusion…..nobody really knows.

I have an internal sequence of sensory information that always gives me a brief second to know when a “drop” is happening. In my body I hear the softly spoken words “going down”, “falling”. I usually say “falling” out loud as well. The outside world becomes frozen, yet crystal clear. It is brighter than normal. My internal world becomes excruciatingly slow. Movement feels like I am going through mud. I always open my hands to release anything I am holding to prevent additional injury. My husband and I worked out his role years ago. He has to do his best to defy his natural reflex to help me. Usually he backs away. If he doesn’t move away, he could be pulled down with me, either under or on top of me, causing additional injury to me and him. I have tried using a walker in the past. It unfortunately has gone down with me as well, so the decision for me to be wheelchair bound , was in small part, to stop the drops. At that time it was mentioned in passing. The car accident, herniated discs and nerve damage played the main role for my being in a wheelchair.

I saw the neurologist today, he wanted me to explain my “fall” in detail. I realized that I had not even considered the possibility of a drop attack. It’s just been so long since I’ve had one, I didn’t pay attention. As I finished my recount of Friday’s event, I found myself suddenly and rather quietly saying “Damn It. It was a drop attack.” It was a forward motion one. I was leaning forward on a hay bale with a sea of gourds covering most of the ground. There were only small spots of ground for me to have stepped down to. My husband had held onto my left arm because while I opened my hands, I never uttered “falling”, the code to let go. It made the drop slightly twisted and caused some different impact that made it seem like a fall. Both the doctor and I am sure that it was a drop attack. When I locked eyes with the doctor I knew what he was going to say and chart. It would be very difficult for him, irresponsible, to suggest anything other than my returning to my wheelchair for my mobility. Between the chance for more drop attacks and my blood pressure drops from my carcinoid syndrome which has caused me to pass out, walking and standing can be a very iffy proposition for me. Possibly, I could use protective gear. I would need to alter the exercises that have helped me acquire mobility. The physical therapist would have to change my program. Maybe, further down the road, limited walking would be possible. I was staring out the office window, with silent tears streaming down my face.

It is strange how many times I have dealt with much worse news about my health, being told things that are serious threats to my very life. My normal response is to acknowledge it and move on. Sometimes, it is delivered in less than appropriate ways, usually by one of the many doctors “helping me” with my cancer ( NET Carcinoids) or my carcinoid syndrome. Still, this was the news that brought me to full weeping. The only words in my head, kept repeating, “I can walk, I don’t want to stop.” It felt like someone had run a knife through my heart, leaving it there to just keep the wound open and bleeding. Standing and walking were THE things I was sure could not be taken away again. I was not handling this news well. I left the appointment feeling despair, something I had not allowed to enter my being before today.

It’s also the season of autumn. It is interesting to me, at least on this day, that we call it fall. Stark and harsh reality are more keenly felt. The crone, hag and wise woman that walks with me at all times, stands before me during this, her time. She, like the many strong and powerful old women of my childhood, sugar coats nothing. Today was no different. I also forget that like those women, she can encircle my waist with her arms, winding through me a dose of a grandmother’s encouragement.

“Don’t be small and don’t be a fool. Cry and keep crying until the tears are done. Take some time away from everything for a few days. This is going to be a process, with setbacks. This is the first drop attack you have had in a very long time. Take precautions, take it slow, take it very easy, and take away this decision from him. So…..it isn’t completely safe to walk. Nothing is 100% safe. So far, it’s just one bone bruise. Living in fear has never been like you. A doctor had recently told you that your heart was damaged and that you could die at any moment. You decided to go on. You come from women who have lived through terrible tragedies and harsh times. Many lived with all kinds of broken bones and broken lives. They grieved, they wailed, they wrapped them to heal and then went on. You stand on their shoulders and they live in you. So, in time, crawl, use wheels, walk or run, but go on.”

I could say the wind touched my forehead. In truth, she kissed me.

I am still upset. I am still crying. I am taking time off. I will work this out. My heart will catch up with my head.

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I could have ended my blog there. I was going to. It’s been a couple of days. I had several conversations with my husband. As always, he is in my corner. I had conversations with women I both trust and love. The crone’s words made their way through me and my heart fully caught up. I remembered to not make any final decisions in the middle of a process. I also was reminded of the many things I have that are not dependent on my physical condition.

I got injured. I have been injured many times. Like most, it will heal. The drop attack could have just been on the hay bale if I had stopped when I first felt “off” and had stepped back against the tree instead of moving forward. Going slower, some protective padding at times, stay off heights, and several other changes could allow me limited walking and standing time. Don’t think for a moment that I don’t know the possible seriousness of these attacks, especially in combination with my carcinoid syndrome. This isn’t carefree, or a devil may care attitude. I have to be very careful. Even in my healthier days I have fractured bones and joints from a drop on a marble or concrete floor. I have had deep cuts needing stitches and doctors if while dropping I caught a sharp edge of a table or landed on a sharp object. Many people do not end up in wheelchairs even with those risks and outcomes. While I will make my standing and walking more limited and selective, I won’t give it up.

I called the doctor and told him what I decided. I said he should reconsider. He paused for several minutes. He asked me to let him run all the MRI’s. Barring any major problem, he would alter his recommendation and agree to a slowed and selected walking with many precautions. I wanted the physical therapist to do an independent evaluation and recommend a program. Again, he did agree. This particular doctor has been with me for almost twenty years because he is both willing to listen and always reminds me that I am the final arbitrator for any decision regarding my health.

My life will have a few new self-imposed physical restrictions. My diseases will not yield to me all the physical possibilities I would like. By the same token, I will also have self imposed permission for more freedom for my art, mind, writing, and especially my relationships. In case you missed my post on making friends online, many of those relationships are with you, my friends online. I am wrapping up my injury. It’s time to go on.

Blessings to all,

Bridget Robertson

Revealing Myself Through Diseasing. Losing My Healthy Status Is A Very Big Thing.

To everyone who loves someone who is sick and those who are sick.

Don’t look away. Not now.

“It’s a big thing when we lose our healthy status.”

Those words, rang through me. I am grateful to my beloved niece, Tara Rachyl, for giving me such a profound statement.

I have multiple chronic conditions and a cancer ( NET Carcinoid/Carcinoid Syndrome) that is both chronic and acute to boot. I lost my healthy status nineteen years ago. We are hard wired to expect sick people to get better or worse. When they remain sick for extended periods or years, people don’t always understand. The sick person, may remain alive, but in a perpetual state of sick or diseasing. Please read that last sentence again.

Sometimes friends and loved ones end relationships. They wanted equity. I can’t guarantee equity. I am taking one day at a time, sometimes one hour at a time.

Everything just keeps getting scarier when your physical body changes irrevocably. In the process of diseasing, my body started to lose many things I had taken for granted. When it outright failed and faltered in ways that are also embarrassing, it felt like cosmic cruelty. How much about these losses do I want to let anyone know? Will they care or be offended if I do? Why not stay silent? Why write about it all? Because, I live in a visual world, that hates anything that does not fit within strict unrealistic standards. Because, we expect people to get better or worse, and we need to stop that.

If you still have healthy status, know that being ill puts us on the outside of normal society. Disease, life threatening or chronic, has ways to make us feel like inferior beings. Healthy society contributes to those feelings. We are exposed and vulnerable. In my bareness I am walking a razor’s edge that begs me to be fearless. In doing so, I am opening up a possible floodgate of ridicule and abandonment from some. I am lucky. I have a fiercely loving and loyal husband and circle of chosen family and friends. Even knowing that, herein lies the honesty….illness has taken much more than I ever expected and will likely continue to do so. To not share my story would lure me into hiding again. It would keep lies of omission between us. We need to stop distorting our real physical shape and physical experiences from each other. I despise the typical media show of beauty and health “standards”. Many diseases, not just cancer, alters our physical bodies and lives in irreversible ways. Let me speak of mine.

I had one third of my left cheek surgically cut out when I was forty three, twelve years ago. It was a large raised bumpy area that developed at my earliest stage of puberty. It was in part, a dermoid tumor. Turns out, after reviewing the testing many years later, there was a section that is part of my cancer. The surgeon admitted there were hundreds more tiny “spots” that he could see. It would require surgery that pulled back all of the skin from my face ( just like a facelift) and scrape them away. This is not something I ever want or wanted to do! Once the cancer was diagnosed, he didn’t want to be the one to do it either. He withdrew, suggesting I talk to surgical oncologists or other plastic surgeons. I ultimately put this off because I could have tumors anywhere under my skin. There is no plastic surgery for the entire organ of skin covering my body. Nor a reliable test to see them if they are not raised or large enough. Even if they could surgically remove every single one, that does not cure or arrest my cancer.

The most embarrassing effect is also the one that has held me back at every turn. Almost all of my teeth broke and cracked. This does happen with some carcinoid patients. Then, they began to disintegrate. Pain medications that I have refused for many years were initially part of the problem. My speech has become difficult to understand. Teeth help us pronounce words. I was an excellent speaker in both large groups and one on one. No longer. I am having trouble finding an oral or maxillofacial surgeon who will remove my few remaining teeth and get me dentures. The doctors in this specialty, are very nervous about the need for an octreotide IV and push along with an experienced anesthesiologist with what is normally routine surgery. (This is the ONE surgery I want done!) In fact, this unexpected loss of teeth is THE determining factor in who I spend time with or where I go. Nothing affects our appearance and others perception of us more than teeth. Who hasn’t laughed, heard or made jokes about people with no teeth?

Eating has become a perverse necessity. Food must be very soft or liquified. There are almost no places to eat out. Thank goodness for high speed blenders and juicers. I “graze” on their results for much of my day.  I can’t eat a full meal at one time without risking my tumors producing high amounts of peptides, hormones, and histamines. That could cause a (another) carcinoid crisis which can lead to a coma or death.  I have a reduced list of foods I can eat. Tyramines are a real problem. I make milk from rice. Our home is a production line of scheduled soaking and cooking of seeds, rice and legumes needed for each day. If this sounds complicated and time consuming, that’s because it is. Animal products are out of the question. It’s the only thing my cardiologist and gastroenterologist can agree upon. If eating becomes impossible, enteral feedings will be in my future.

In the first three years of the cancer I was bed ridden. Outside of those three years, I was wheelchair bound. A car accident from 1995 left me with two burst discs and a lot of nerve damage. Spinal surgeons refused to do surgery because I also have  fibromyalgia. Immobility brought a weight gain of two hundred and forty pounds. The medical world calls it morbid obesity. It comes along with open disgust from many people who assume you can’t control your eating or a number of other inaccurate judgements. The first oncologist dismissed the weight gain. Why? He thought I was dying. Every doctor around or after him made it THE issue of every single appointment. I was well aware of my size 38 body. I asked for their wisdom. Their greatest plan…..eat smaller portions. What a useless and ineffective idea. I lost over one hundred and thirty pounds by eating a soft whole plant diet with an enormous amount of filtered water. The surprise…. the weight loss was ugly. It left me oddly shaped. Cancer weight loss is uneven and lumpy at best, even with exercise. My spine, shins and hip bones show. I have to bring and sit most times with extra cushions, including when I am in the bathtub. My thighs, stomach and upper arms are disproportionately overweight.

The second unwelcome surprise, I lost an additional seventy pounds in six weeks. Malabsorption is common in Carcinoids. It scared me beyond words. I researched and tried something that slowed the weight loss down. I still have weight I can lose. Just  not through malabsorption. Thanks to my now, third, physical therapist, I can stand up straight and do limited walking. I have begun intense stretching like a dancer. She is trying to save and increase muscle tissue in my body. I finally made peace with this lumpy, misshapen, mostly, size 12 body when I decided to stop avoiding taking pictures. The world gets to see what I look like. That look is of a scarred woman.

I have developed ninja warrioress skills because of doctors. The surgery doctors would love to do……..is aggressive and preemptive. I’m not letting them cut away major parts of my digestive tract on a maybe. That, would definitely put a clock on my life. I am a very reluctant and difficult patient. If I let them, they would just keep finding more and more pathology to report and suggest either an obscene amount of questionable medication (which always comes with side effects and/or allergy problems) or continuos dissection of my body. Whether they personally will do it or not seems to be up for grabs. Most of my energy is used for the resistance battle against all of their “modern skills”.

My natural skin tone is very fair. Pale would be accurate. So, flushing, the hallmark of carcinoid syndrome, that can turn my face purple is both painful and humiliating. People will both stare at you and ignore you at the same time. It’s a confirmation of many quantum mechanic theories, this being invisible and visible all at once. People will also comment in derogatory terms about you, in front of you, but not to you. I won’t lie. It does hurt. Strangers let it be known that your physical presence is undesirable. All of this while the searing heat and intense itching are driving me to ice buckets to dunk my face and/or back into, whether in private or public, to simply keep me from ripping off my skin with my bare hands.

I throw up and/or have diarrhea almost daily. I need to know where a bathroom is every time I leave my front door. Whether I can travel, or how often, is determined by an app that helps me find restrooms, even within blocks of my home.

Pain is always present. My normal everyday pain begins at a seven on the 1-10 scale. I can’t spend my life waiting for a day that I will feel good. Those haven’t come in years. So when I leave my home, it isn’t because I am feeling well. It’s because I was a recluse for about eighteen years. Being home bound was a tiny life. I may not  have a choice about being at home 24/7 at some future date. I can’t seem to accurately judge how much activity I can do without overdoing. This week I exacerbated pain throughout my body even in places I didn’t think could have pain. My recovery, can  then take more than a week. Pain medication did not help me. I was given many at first. The glue from the patches still causes severe itching on every site where they were placed. People don’t always have the option to refuse pain medication. It may not be an option for me at some point. I am certified in many alternative methods, my experience thus far, is relief from any one source or mixture is spotty.

This past weekend, I started wheezing and being out of breath. This is just the latest symptom in my carcinoid syndrome. Frightened, I only told my husband. He had noticed. I don’t know which of us was more concerned by this newest development. It happened again, yesterday. This could stop my physical therapist’s progress. Being unable to breathe is not only terrifying, it makes movement impossible.

There are other times I look just fine. There’s a real absurdity. These diseases are called “invisible”. My appearance cannot tell you how I am really feeling or the status of my illness, unless I am flushing. The  “Oh, but you look so good”, has nothing to do with what I am experiencing. Here is a small list of things you will never see even in person, or on my face, or in a picture.

My chatting away with a friend won’t register the excruciating pain in my back, arms and legs screaming through my nervous system.

My writing can’t let you feel the ice cold in the bones of my hands that I will wrap in a heating pad for the following twenty four hours with limited relief.

My words cannot help you understand that I spent hours looking up most of these words over and over to write this blog, because I can’t remember the spelling for two seconds.

I don’t speak of the many times I am unable to understand a single page of a book that I reread five times, because comprehension has deserted me.

There is no way to capture my need to shut off every light, have nothing touching my body with only quiet music playing, because any other sense stimulation feels like a total body assault.

When my iPad becomes too much stimulation and my inability to engage on social media disappears because my brain will not make sense of what is in front of my eyes, I don’t understand either.

I can’t shift the feelings of missing out, after I have forty eight hours of insomnia followed by twenty hours of sleep that prevented me from, fill in the _____________ (friends birthday, husband’s office function, lunch dates, web meeting, circles, etc.).

I imagine some are expecting this to wrap up with many hidden gifts from these deficits. Not today. That’s for a different post. I am sitting with my discomforts as discomforts. I won’t deny and run away from them. Yes, there is always an ongoing dance of laughter and joy somewhere while these are occurring. I observe people rushing to those dances as if we can inoculate ourselves from any further deficits. We can’t. I am not unique or special. We all have great difficulties. Mine are through disease. I decided to give them voice, because we all need to be understood and be gentler with each other. Too many of us have invisible struggles. My hope is that we all develop our abilities to become more compassionate, empathetic, loving, kinder and humorous. Somedays humor is all I have left inside of me.

My niece, Tara Rachyl, gave me a great ending to this blog as well:

” It is a stark reality, YOUR everyday. And there are just so many who don’t understand how your life gets flipped, turned upside down when you lose “healthy”. Nor do they understand that their well intentioned platitudes are hard to receive with grace when you are 12 months, 2/5/19 years down the track from the acute onset of the disease that took away your health.”

Thank you Tara. You are articulate, brilliant, beautiful and I love you.

We both have lost our healthy status. It was and is a very big thing.

Blessings to all,
Bridget Robertson.

In The Pack Of Life, I Am A Vital Omega.

As a woman working for the health of The Mater,

I am an animal advocate. It is in my blood. I practice shamanic journeying, dancing (even with cancer and in my wheelchair) and singing. Shamanism is practiced today by people of all religious backgrounds. It was and is an ancient worldwide practice.

* “The word shaman comes from the Evenki and related Tungusic languages such as Manchu”.

Shamanic practice uses “Journeying”, an active, participatory process, making it different from meditation. The first journey you take is to the lower world. You go there to meet your power animal. In all of my research and practice this is the fundamental beginning on which every other shamanic practice will rest. Animal spirits are with us from birth. If you made it to adulthood, congratulations, you have one. Occasionally, people get more than one. The wellbeing of spirit animals is dependent on your relationship and the wellbeing of their counterparts in the physical world. I read and hear too many modern best selling authors and teachers of shamanism wanting us to only “work on our inner landscapes”. I disagree. The first two rules of all spirit animals are THEY MUST EXIST IN THE PHYSICAL and THEY MUST BE WILD. Right now, too many species are under attack and threatened everywhere.

Wolves are a prime example. They are an intelligent species with very complex social structures and phenomenal apex predator skills. They self regulate their own population, eat diseased animals and had **hunted cooperatively with humans on Turtle Island (North and towards South America) for millennia without extinction to any species. During that time wolves remained wild and plentiful. Today, If you have a dog in your family, thank a wolf. Evidence is showing that the wolves were the ones to add us to their packs. We humans became additional members of their family. Right now, for absurd reasons, we are hunting them to extinction.

I spend time learning about any power animals, but wolves hold a near and dear place. I am fascinated with their social structure. The model of alpha, beta and omega are being rethought in some science circles. I still use it because it is well understood amongst us average folk. Ask most people who they are in a wolf pack, you will almost always hear them declare alpha status. (Hmmmmm) While I know that I exhibit some alpha female characteristics like leadership, the ability to relay that leadership to others, fierce protective skills, and taking responsibility for children everywhere as my own, it is not my dominant characteristic. Beta characteristics are my weakest. I neither participate in hunting or engage in challenging other alphas. Nope. I understand omegas. I know many people will cringe at the thought of anyone claiming an omega status. Traditionally they are seen as “scapegoats” and weak. I think that definition is through the murky lens of people who do not understand the full purpose of omegas. We, the omegas in the human/animal species provide space for emotional and idea outlets.

Omegas are known to release tension in their packs. As the youngest of six children, sarcasm and wit were among my many survival skills. Getting my older siblings to laugh, gave me full recognition in my family as more than a baby sister. I was suddenly smart. Many a tense moment can be redirected by a great sassy line. I know funny. I still make them on the fly. It does diffuse difficult situations. I have watched someone move from tears, uncertainty or boredom to laughter through this one skill. It’s not appropriate for every situation. I do try to be judiscious. Overdone, it is annoying. So, as an oft omega, I am a listener as well. I will sit with someone for days without any real breaks until they have worked through any situation. I want all of “my pack” to have a place. To be able to release and/or clarify their situations, emotions and dreams. The times when I absolutely flip from an omega into an alpha is if anyone attempts to attack or use me, or someone I love, whether it be physically, emotionally or spiritually. They need to look elsewhere to attempt manipulation or violence. My stand on that is rock solid.

The surprise trait of the wolf pack is:

*** “It is interesting to note that in packs that have been observed losing their omega, the entire pack has entered into a long period of mourning where the entire pack stops hunting and just lays around looking miserable.”

I have contemplated that profound behavior since I read it over six months ago. We may have it backwards. It may be the omegas that hold the key position in the pack. The individual alphas and betas can change within a pack. When that happens the pack will keep moving on. It’s a death of an omega that stops them. Omegas have been the glue holding the pack together. I suspect they manage those alphas and betas from a perceived lower position. I have done that many times throughout my life. I held and commanded people’s respect. It was because my facts, knowledge and especially my intuition, having taken just once (sometimes twice) to be proven. It made me key to preventing problems and complications. I am certain, no matter the external observations, omega wolves do the same. They give emotional balance. They stop the alphas need to be overpowering and possibly start excessive fighting amongst wolf packs. I don’t think that alphas can drive down violence. It will be the respected omegas. Yes, omegas are known to fight, some do move into beta or alpha status. I’m going to keep my varied status, with my omega leading.

There are probably scores of benefits an omega provides that we misunderstand or simply have yet to record. We misunderstand wolves in general. Let’s be honest, we misunderstand animals. Period. But we sure need to begIn understanding everything about them. Our lives depend on it. From a shamanistic view, if the animals are not in the wild, we have lost our power animals. If we can’t protect them for their intrinsic value, do it for selfish reasons. As one who has omega skills, that glue to life, and who practices shamanism, I can say, it’s not just inner work. We must translate it into external action. Whether you acknowledge it or not, a wild animal has kept you alive. Return the favor.

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Blessings to all.

Bridget Robertson.

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* http://www.sourcememory.net/womanshaman/samaan.html

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** I am both an ethical and dietary vegan. I do everything I know to never eat or use animal products. I do my best to not use products that endanger their natural environments either. I avoid fruits and vegetables hauled across thousands of miles or exotic locations. We often destroy animals habitats to satisfy the demand for these foods. Sometimes my endeavor becomes impossible. Palm products come to mind. I know through shamanic work that spirit and life resides in animals, stone, plants, water, fire and the earth itself. So, why do I choose the arbitrary line of animals? Because I can. I buy in bulk and store non-gluten grains and legumes. I eat about 50% fresh raw foods. I give thanks and make reparations to those plants daily. Whenever I die, I will be planted in an urn that grows a tree. Exploring the worlds of shamanism has shown how real the life, soul and intelligence is in elements, plants and rocks as well as all animals including humans. All are equal in the circle of life. Still, I must eat. By choosing no animal products, I have caused LESS harm. I fully acknowledge that I have NOT ended all harm.

I know almost all vegans use no animal products that come from animals with a nervous system. I just have a different direct experience and reasons.

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*** http://www.runningwiththewolves.org/Behavior1.html