Rarest of Them All.

image
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.

Dedicated To All ZEBRAS!

image

 

The mascot for NET Carcinoid/Carcinoid Syndrome is zebras. I belong to three Facebook NET Carcinoid/Carcinoid Syndrome groups. Not all Facebook space is created equal. I have found that which can be elusive for some people, real support and help as I enter what I call “The Holy Gates” of my Carcinoid groups. Some make posts, others comment at times, for whatever reason, at times people just read through the many threads. I promise, I can feel each and every zebra no matter how much or how little they actively contribute.

When one of us is accepted into a new drug or treatment trial or has a successful procedure we all celebrate. I know some people believe Pharma and doctors are only in it for the money. I know some think modern medicine gets it wrong. Please consider, that when your very life is on the line, even previous held beliefs matter much less than being given options. So, I cheer every zebra, no matter what they choose. If that is where they see their best chance, I am behind them all the way. If one is going to an ER for any one of the many serious problems that comes with this cancer or syndrome, or are scheduled for a difficult procedure(s) or having hard times, the herd will hold them up. When one dies, we all mourn, even if we don’t know their name or the details. Boundaries are respected and no one judges where you are on your journey. There is always an outpouring of care and compassion as we wind our way through the pain, procedures, tests, unknowns and the medical systems throughout the world. We light candles, say prayers, share our experiences, get resources, find ways to better our lives and bless each other everyday.

We are a diverse and worldwide zebra herd and family. We also have many shared experiences. Many have other illnesses besides Carcinoids. Most have had to fire several doctors along the way. I was officially diagnosed 10 years ago this month. I have had NET Carcinoid/ Carcinoid Syndrome for far longer than that. I have had other illnesses since my childhood, since birth. A few decades back I had a some good years. All. In. A. Row. These days I look forward to having a good day. Heck, I’ll take several hours strung together. My diagnosis came by way of a dermatologist working to eliminate my stubborn and extreme “Rosacea”. I was certain that while painful, it was a minor problem. He mentioned that he had heard of something called Carcinoid Syndrome and thought it was a gastric condition. My gastroenterologist, had been unsuccessfully treating me for “IBS” for over ten years, because it wasn’t IBS. It was all part of my Carcinoid Syndrome. Fortunately, the dermatologist ordered my first 5HIAA. Just one of a long list of tests I had and have done. ┬áIt would be months before I even got to see an oncologist. Like many, my journey has had its fair share of difficulties. My first really big hurdle came when a new insurance plan denied coverage for my treatment after I had been receiving it for three years, saying it was unreasonable and without a specific pathology. My oncologist who while claiming to be an expert in Carcinoids, was not, shrugged and said there was nothing he could do. He was retiring. It was only after quite a bit of time and when I got a new primary care doctor, that treatment resumed. He was more of an expert than any doctor I had met to that point. He knew, and was the first to tell me, that Carcinoids was NOT benign and that having an unknown primary did not change the fact that this is a very serious cancer that could spread ( metastasize) anywhere. He filled out, in detail, extensive insurance forms and wrote in depth letters. I got my treatment back. He and one other doctor helped get me a few new doctors. He is also very rare in the sea of medical professionals that we zebras must wade through to get diagnosis and treatment.

While I understand the wisdom of taking control of your health, medical systems are designed to make compliant and quiet patients. I suggest reading Jean Shinolda Bolen’s book “Close To the Bone” to get an accurate description of how that plays out. We are rarely those compliant patients. We question doctors extensively. We change doctors when needed. We spend our days looking over information, researching on the Internet, getting data, learning medical language, getting reassurance and advice from each other, looking for any alternative treatments and doing every spiritual, and emotional healing practice that we find useful and palatable. We are very informed patients on all manners of healing. We are also making our lives as rich as possible. We do what we can each day to be about the business of living.

I never forget that I am very lucky. I have a spouse who loves me and tirelessly helps me with what would be simple tasks for many people. I have friends and family that respond to my posts and blogs with a great deal of encouragement, compassion and even fantastic humor. They see all of me and accept my diseases right along with me. Some zebras never tell anyone, anywhere about their disease especially on Social Media. Others make posts that get no response. We, zebras work to understand. We know that people want happy, positive posts. We know some will be irritated by our updates on our health. We know our disease frightens some. It frightens us too, along the way. And we don’t have a way to disconnect it from our bodies. Most all of us zebras have had people disappear completely without giving any reason, including family. We feel the real sting and hurt when that happens. I have to say this is a flaw of mine. I am not one to forgive people who walk out on sick people. I don’t mean just me. I mean anyone who is sick. Nor, do I apologize for this flaw. I don’t intend to change it. If others want to forgive…feel free. You MAY have better angels than I do. I have no patience for this behavior.

I would ask that today to think about NET Carcinoids which is rarely given much attention. Also, consider everyone including yourself, if it applies, that is having to cope with chronic and life threatening illness. Be gentle with the sick. We are not lacking positive thoughts or vision. A post that Clarrisa Pinkola Estes made recently on Facebook went into great detail asking everyone to withhold judgement and speech about simplistic “cause and effect” or blaming sick people. We all know that some who do all the healthy things, are generous and kind, still get sick and die young. We all know a few who do everything unhealthy, can be mean, selfish and horrible who live well and into old age. I avoid simplistic answers and ten second memes that spout them. I think people are more complex. I think the “cause” of most things is complicated and multifold. And please, if you need support, I encourage you to join a group that does just that. I consider my fellow zebras and our groups “Sacred Ground”.

I also want to thank all of you, my friends, family and fellow zebras. Sometimes I get exhausted, angry, bitter, feel bewildered, betrayed and occasionally despair. It is often the simple gestures that matter most. Many of you pm me songs, stickers, pictures, wonderful messages or leave a comment on one of my posts. I hope to start Skyping with many of you soon. Sometimes those are the only things that get me back into my warrior spirit. On the days when I can do the whole FB thing….I love your posts. I want you to know how many talented, funny, brilliant, beautiful and generous people I know and call friend, family/zebra.

Blessings to everyone,

Bridget Robertson

Wrapping Up and Go On.

image
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.

———————————————————————————-

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