Friday, March 30, 2007

That Which is Important

"Almost dying changes your life forever...for about two months."
-The character of "House" on the TV show House

This is so true. I love this quote and think of it often.
Being sick has a similar effect, perhaps not quite as overwhelming. I really felt it yesterday when I went back to work after having been out for two weeks recovering from surgery. It was nice to be around people again and their well-wishes filled me with the joy of human kindness. They told me that I was missed and the reasons they were glad I was back and that made me feel valuable. Things felt comfortably old and new again all at the same time.
My internal shift was mostly apparent when a situation arose that was stressful. My normal reaction would have been to become stress but not yesterday. Yesterday I still carried with me the value of life and the appreciation for the day that being ill gives you. When stress came knocking, I found it to be silly and fought to not giggle in front of those around me that were upset. What joy it was to have this distance and perspective.
Bottom line: I had connected with That Which is Important. There was a time, when I was dying, that I lived in the world of That Which is Important and easily kept both feet on the ground with a steady head, but that has been years past. This was a sweet and familiar breeze wafting through, oh, how I had missed it. If only I could find a way to bottle the knowing and holding true to That Which is Important...I could giggle at work all day long! What fun that would be.

Thursday, March 29, 2007

I've got a lot of work to do...wait...wrong again!

I've got a lot of work to do. After having 2 weeks off of my receptionist job I have learned some things. I have listened to my mind chatter at me and found it to be quite annoying. "You've got to do this", "Stop doing that so much", "Never do that thing again"...chatter chatter chatter. So many self-made rules. A small dictator lives in my mind and is constantly attempting to create order and get "results".
At one time I was inspired by the idea that I should live in a way that will ensure I feel proud of myself on my death bed. Now I have seen that inspiration transform into a burden. I am driven to bake an extraordinary life pie but with all the ingredients to make only the common apple. That would be ok if I weren't so focused on attaining some yet undiscovered fruit, baking it in a yet undiscovered kind of crust and then winning the "Most Extraordinary Pie Ever" contest. It is my desire for uniqueness and success that drive my mind's incessant chattering. It's now my job to find a way to want less. As I write those words I am being attacked from within by soldiers from The Extraordinary War but I must stay strong.
I will sleep late, I will watch TV, I will eat crap, I will not exercise, I will write only if the mood strikes and I will work at a job without higher aspirations. Perhaps if I am able to overthrow my Mental Dictatorship I will find peace.

Wednesday, March 28, 2007


Everyone has their own coping mechanisms. Some people I have known use denial. They know as little as possible about their illness, their medications and their prognosis. From what I have observed, this manifests as chronic worry about every tingle and unusual sensation that could mean more illness. I have also seen denial manifest as a manic need to do, do, do even when the body is too tired to continue. There is always another job to do and there is never a moment without noise.

Some people I know use self-pity. They see themselves as victims and rely on other people to “serve” them. Their identity is completely wound around being helpless and sick. This mentality continues even when the body is healed. From what I have observed, this manifests as deep fear of failure and inability to embrace life.

I use positivism as my coping mechanism. I choose to see only the bright side of my illness and concentrate on all the lessons I have learned from being sick. I find a deep spiritual meaning in all that I have suffered and feel closer to God because of it. Sounds good right? If only it were that easy.

It took me nearly 34 years of living with severe illness to finally admit to myself the other side of that story; the side of the story that isn’t so pretty. The truth is that I disconnected from my physical self early in life. I found great comfort in viewing my body as merely a wrapper for my true self, the soul and mind that I call “me”. That separation went beyond a metaphysical philosophy, however. At the darkest corners of myself I hated my body. I hated it to the extent that I wished it pain and suffering. I secretly believed that it deserved every needle poke, every IV and every cut of the scalpel. I hated it so much that I blamed it for my life’s struggles and felt that it had betrayed me by being genetically flawed. I had an entire belief system that was unknown to my conscious mind.

When I discovered this unconscious set of beliefs, I was terrified. This went against all that I thought I was and all that I thought I believed about my illness. I wasn’t nearly as evolved as I like to think I was!

As strange as it sounds, my body and I needed to have a conversation. My body was resentful that it had been violated with all the thousands of medical interventions and I was resentful that my life had been interrupted over and over by a mutated gene. It was an internal conversation between 3 parts of myself; logic, the part I consider “me” and my physical self.

Logic told us that life would be much better if we could learn to work together and be in harmony. “Me” and my physical self didn’t even know how to take that first step to putting the past sufferings behind us and coming together as one.

As I write this my body and I are in the early stages of figuring out how to be a team. We have called a truce and will work to have compassion for each other. I see that if I love my body more I will treat it better. Perhaps I will want to eat well and exercise! At the very least, I will stop seeing it as a separate part of myself that is an enemy and recognize it as another part of what makes me who I am.

My body is an innocent in this scenario, just as I am. I see that now and am working on forgiving a wrong that was never committed. I am working on loving myself from every angle.


Medicine often generalizes people based on their diagnosis or medical history. People can make the assumption that because I am “a frequent flyer” that simple things like blood draws would be a piece of cake. I was surprised to learn that it is common for the opposite to be true.

Example 1:

I was in the hospital suffering from the effects of a tick bite and had been diagnosed with Rocky Mountain Spotted Fever. I wasn’t feeling very well, as you might imagine, and was getting much needed rest. It was 2am and I was sound asleep.

A phlebotomist came in my room and startled me by turning on the bright lights over my head. I tried to keep my eyes closed and not let the rumblings of her cart and the scrunching of her papers wake me up so much that I could not fall back asleep. Before I knew what was happening, she had put a needle in the bend of my elbow. I didn’t have the chance to tell her that I preferred to be poked in my hand as all of my other veins were weak and usually blew out.

Still working to keep myself quiet enough to be able to fall back to sleep, I remained calm and let her finish. When she left however, I was met with an excruciating pain in my arm. I can only assume that she managed to hit a nerve because the pain was nearly unbearable. I didn’t bother to call the nurse, I knew there was nothing they could do for this kind of pain. Instead, I cried for hours, trying to let myself accept the pain and just go back to dreaming. I was unable to sleep again until about 6am in the morning when the pain finally started to diminish.

At 7am the intern came in to wake me up and start my morning of questions and more tests. I had lost hours of sleep due to pain but there was no sympathy on the part of the staff. I truly don’t think that they understood how a blood draw could hurt so much. I wouldn’t have understood either if it hadn’t happened to me.

Had it not been for the hundreds of prior blood draws and IV catheters that had made my veins so fragile, I doubt this would have happened. My body had reached a physical limit as to how much poking and prodding it could stand.

The accumulation of years and years of invading my veins had make simple blood draws a painful event even under the best of circumstances. It has gotten to the point that I often cry all the way home after a routine blood draw. This kind of accumulation is not something people in the medical field seem to be aware of and it is up to you to educate them as well as prevent against any unnecessary tests and procedures that will add to this degradation of physical tolerance.

Example 2:

I never thought much about cell memory until I experienced its effects. When it came to surgery, I had always had the attitude that I was asleep so what they did under anesthesia didn’t matter much. In fact, I was never concerned about the transplant surgery itself because “I got to sleep through it”. I was always more worried about the recovery after.

While that is a partially true statement, I have found that it is a bit naïve.

One day, when I was playing a game, I found myself in a very similar physical position to the position that I was in when I had both of my surgeries. I almost immediately began to feel an emotional discomfort. I tried to ignore it so that I could stay in the game but the feelings grew. Soon, I was feeling strong anxiety and began to cry. I left the game and went off on my own. What happened next was a confusing series of emotions. I began to sob uncontrollably. I still had no idea what was happening to me and why I was so upset. Somebody came over to me and asked me what was wrong. I had no logical explanation for my emotional outburst. The only thing that was coming to my mind was the word “Violation” and an intense feeling to match it. I finally put the pieces together and realized that my body was speaking to me and my feelings were not coming from an emotional place but a physical one. I sobbed for a solid hour and let my cells release the pain of my two surgeries. “I” had been asleep, but clearly there was a part of me that wasn’t.

After my second transplant I was facing another surgery on my stomach. This was a laparoscopic procedure and by all accounts a “minor surgery”. My reaction to the idea, however, was not minor in any way. I was terrified of the thought of it and fought the team tooth and nail on having it done. It finally occurred to me that part of my reaction was not coming from my conscious self, but rather my cells once again speaking to the pain of their violation. I went forward with the surgery, but was aware that there was a part of me that needed nurturing and assurance, and it wasn’t my mind.


My body has been through so much cutting, poking and prodding that it has reached a certain limit. I now try to communicate this to my caregivers before a procedure because I know their expectation of me may be inaccurate. They think because of all that I have been through that I will be an “old pro”. I have found in talking with other patients that this feeling of accumulation is not uncommon and should be factored into the emotional formula that comes with undergoing any procedure, large or small.

Alternative Medicine

Excerpt from "Alternative Medicine" as seen in Sick Girl Speaks!

He came highly recommended to me. He had been one of those people that seemed almost to defy physics in the magic he could perform to help the sick. A woman I had close connections with would see him once a week and spoke of all the amazing things he knew about her body and how to heal it; nothing that the western doctors had been able to do.

I made an appointment and was anxious to see what this man had to offer me and my ailing health. He lived far out in the country near a beautiful lake. The house was large and had an entirely separate building as his office. One thing was for sure, he made money doing this healing work.

When I went inside, he was with another client. I sat in the waiting room and noted the many Native American chachkis around me. That made sense, someone who had been trained by Native American healers perhaps? I was excited to find out where his skills came from.

His client left and he came out to meet me. Although I was startled by his appearance, I was not surprised. He had long grey and white hair and so many crystals dangling from everywhere that I hardly noticed his weathered face. He spoke to me in a soft voice, one that I had heard many times, one filled with pity and sympathy.

He took me back to his large “treatment area” that was reminiscent of a covered greenhouse. Strange art, presumably his, was sitting on the floor encircling the room. We went to the very back corner where he had me sit in a chair and he sat at his desk.

He began by asking me to put both feet on the floor, closing my eyes and breathing deeply. Very familiar with this routine, I obliged with the exception of the breathing deeply part, as I was unable to do so at this point. I naturally began to go into my meditative state, a place I was familiar and comfortable with. He began talking to me about going inside and feeling the white light starting at my feet and moving up my legs into my torso, my arms, my head. While the meditation was routine, his comments were not. He was acting as though he could see the light and confirming that I was successful in my mediation. It rang phony to me and I decided to test him. When he moved on to an exercise where I would “open” and “close” my heart, I purposely did the opposite of his directions. He proved to me that he wasn’t “seeing” anything by his dramatic ooh’s and aww’s at my ability to open my heart when I was in fact not. He was on thin ice.

After the meditation was done, he stared at me, intensely, for what seemed like weeks. I was irritated with his charades and stared back. Eventually, he asked me in that liquid tone, “What do you think?” And I said “I’m just waiting”. He replied “No, what do you think of me?” I replied “Not much.”

He was clearly upset and flustered by my lack of wonderment. He then launched into a lecture about how I needed a spiritual tradition and that when I found one I would be much more centered. Translation: “I am the Guru here, you have no idea what you have in front of you and you’re way off base.”

Little did this man know I did have a very strong spiritual tradition; one that I had in fact dedicated much of my life to. His rude assumptions based on my appearance alienated me even farther but, for some naive reason, I still let him treat me.

We moved to the table and he hooked me up to a machine that he had “adapted”. I recognized the machine; they had the same one in my chiropractor’s office. The wires did not look the same and it did not have sticky pads either. Instead it looked more like small coat-hangers at the ends. He bragged that this was the only machine of its kind. Again he was miffed when I told him my Chiropractor had the same one but he quickly replied; “But does hers measure your Aura?” No, hers did not measure a person’s Aura because that would be stupid! By definition, an Aura changes second by second based on your emotions and the environmental stimuli. Even if he could measure it, what would be the value in that? Weary of our battle of spiritual wills, I agreed he had the only one and shut up. I was ready to go.

It would be a long time before I could leave this man’s lair. I was on his table for 2 hours, getting my ‘Aura checked by the only machine of its kind”. Finally, it was time to go and he was going to make me up some homeopathic remedies. I declined. Again, he was flustered but offered a big discount because I didn’t want his remedies. He charged me $200.00! This was a discount as he normally charged at least $500.00 a session. I threw my check at him and got out of there as fast as I could. I obviously never went back.

I shudder to think what might have happened to my bank account if I hadn’t had the presence of mind to test this man’s abilities. I like to think that I would not have fallen into his spell like my friend but someone who promises health in the face of death can be quite an alluring thing.

These are the kinds of alternative “practitioners” that give all the good ones a bad name.

He promised me the things I most wanted, health and happiness, and used those things to lure me into his practice, despite his limited ability to provide those things. As for my friend, he became her primary source of treatment and strongly advised her to not seek council outside of his techniques. The result was that she went into early kidney failure and he tried to treat it with his remedies but she became so ill she had to “defy” him and seek out a western doctor. She then realized that he would have let her die before relinquishing control of her health. This is when she chose to stop seeing him.

Choosing Your Doctor

Excerpt from "Choosing Your Doctor" as seen in Sick Girl Speaks!

Compatibility with your doctor is an issue of great importance. Whether you see him or her once a year or once a week, it is important to have some of the same philosophies and approaches to your health care.

Personality is important, and that is obviously something completely unique in every situation.

There are a few generalizations I can make about doctors, however, that are worth considering when you are deciding if you and your doc are a good match. At the very least, it is imperative to know that when it comes to your main physician, you do have choices.

Individual vs. Team

Both of these options have clear pro’s and con’s. Being treated by and individual allows more room for consistency and personal interaction. For the most part, I find this to be ideal. However, example 2 is one dramatic experience that can outline the flaw in this system of care.

The upside of the team approach is that there are many doctors working with you who are able to put their heads together to find the course of care best for you. There is less burnout and there is always someone to cover for a sick or otherwise unavailable doctor.

The down side of the team approach is the revolving door. Each time I go to clinic at my Carolina Hospital I seem to have a different doctor. There is less consistency of care and less of a personal rapport. Sometimes, the team does not agree on the next step and this can cause a gridlock that will postpone your treatment for days, maybe even weeks.

Conservative vs. “Laid Back”

By conservative, I do not mean politically. There are some doctors who will not take a chance with your health in any way. That means, if you come in with a fever, they will send you for blood work, a CAT scan and urinalysis before they are satisfied that you only have a passing virus. The “laid back” doctor, however, will assume it’s nothing before they assume it’s anything. They will send you home and let you “wait it out” before they will order tests or prescribe meds. Both have pros and cons, but it’s important to know which approach you prefer before choosing a doctor.

Old vs. Young

At the risk of being “ageist”, I have found there are differences in the two. They both have very distinct benefits and it’s up to you to decide which one seems more important.

An older doctor obviously has more experience. This translates to the patient as less guess work and unnecessary tests. I have often gone into see an older doctor with unusual symptoms and they know right away what is wrong with me. Why? Because they’ve seen it first hand millions of times.

A younger doctor may have to do a little more research to figure out the cause of your problems, but the advantage to a younger doctor is that they are more often up on all the latest drugs and technologies. Medicine changes rapidly, and it’s difficult to keep up. A younger doctor is more likely to know about a new procedure or treatment that can be a smoother road for you than the roads of yesteryear.

Male vs. Female

The difference between male and female doctors is very much what you might expect. Women tend to be better at the whole beside manner thing. I have no evidence to prove that they are better or worse doctors than men, but I do sometimes worry that their emotionality can lead to a quicker burn out.

Current Philosophy

In many areas of medicine, there is a drive to use the latest and greatest theories to enhance or prolong life. What is interesting is that no two centers seem to have the same idea of what that “latest and greatest” may be.

When I was waiting for my first set of donor lungs I moved to California. I was very sick but I figured I could wait somewhere new, different and warm (as opposed to the third floor bedroom at my parents’ townhouse). I transferred my care to a California University Medical Center and was very happy with my team of doctors. I was still considered a patient of Carolina University, however, and so was not bound by the philosophies of California. At that time, all California CF lung transplant patients were required to undergo sinus surgery before the transplant. The theory behind this was that the sinuses had infection and that infection would eventually infect the new lungs and therefore it was best to clean them out. My doctor at home was in complete disagreement with this idea. He felt strongly that many patients would die getting the sinus surgery and was far to much of a risk to take. This kind of disagreement with procedures is not at all uncommon. Medical theories and practices change with the wind and when you are choosing your doctor, you may also be choosing a certain protocol. Be sure to do your research and discover for yourself if this is a protocol you agree with.

It's Time for a Medical Revolution

What is a revolution? It is when people finally realize that the system isn’t working and isn’t going to change on its own. It’s when enough people share their experiences and decide that things should be different. It’s when the people ban together and work to protect themselves and take a stand for what they believe. The Medical Revolution is not going to begin with the Doctors, Nurses or hospitals. The only way for us to change the way we are cared for, is to change the way we approach our health care. The Medical Revolution is not a banding together of a group carrying signs and marching on Washington. We’re all too sick for marching, right?

This revolution is one by one, patient by patient. The more you know about the things to expect, the ways to navigate yourself and the tactics to try, the better off you will be stepping over the threshold into the world of Medicine. If enough patients and private caregivers demand the respect, organization and consideration they deserve when under medical care, eventually the system will have to adopt policies to ensure these new demands are being met. It will simply be too difficult to deal with a hospital full of squeaky wheels!

This is not a blog about politics but it is a book about the beginning of a Revolution.

It is my hope that my candid disclosure of many different aspects of my illness experience will give medical professionals a different outlook on the patient perspective. That is one class that is not taught in med school but needs to be.

May all of my experiences serve to help others navigate around similar obstacles.

I send healing and peace out to all of those struggling down the path of illness.

Thank you for reading this blog.

Squeaky Wheel

Excerpt from "Squeaky Wheel" as seen in Sick Girl Speaks!

A friend went in to see her specialist complaining of numbness in her legs, extreme fatigue and strange tingling sensations up and down her left side. Casually, the doctor mentioned that it could be Multiple Sclerosis, among other possibilities. Because her mother has MS, it was obviously the possibility that stuck out in her mind and sent chills of fear through her aching bones.

They took blood and promised that the results would be back on Friday, 4 days later. 4 very long, scary and uncomfortable days. During that time her symptoms grew worse and she began to have additional ones; the primary being painful white bumps on the back of her throat.

Thursday came and went with no call about her test results. At my urging, she decided to be a “squeaky wheel” and call before the end of business on Friday with two objectives. 1. To see if her blood work results had come in 2. To offer her new symptoms as they may be a key in figuring out what she was dealing with.

She called at 2pm and the office had already closed at 1pm. Choosing to go against her instinct to be “nice” and wait until Monday, she called the emergency number given. Surprisingly, the doctor himself answered the phone. She began to tell him her newest symptoms and he gave her a quick over-the-phone diagnosis. Before she could ask what her blood work showed or if the new symptom was related, he had another call and had to get of the phone immediately. She held on the line waiting for him to finish the other call only to be met with an impatient click and “What else do you want?” She could barely get any words out before he once again claimed the urgency of the other call and hung up. Naively, my friend thought he would call back. He did not.

At some point it dawned on her that he may have not even remembered her case and the fact that he had said she may have Multiple Sclerosis. He thought she was calling the emergency line about white bumps in the back of her throat!

Had it been me, I like to think I would have called him again, but I can’t be sure of that. For people that are not used to or comfortable with being assertive, it is often very difficult to push the issue with the medical team. For my friend, calling the emergency number was a bold move and calling it again seemed out of the question. The result is that she got spend the rest of her weekend being very sick with no idea what was happening to her. For the doctor, it was two more days. For a patient, it is a lifetime of worry and contemplation.


As a patient, I have learned the value of being a squeaky wheel. As someone who works in a doctor’s office, I have learned the necessity of being a squeaky wheel.

There is a fine line between being a Squeaky Wheel and being a Pain In the Butt that will make people not want to help you. I like to qualify it by saying; you must be a humble, polite, persistent squeaky wheel. Don’t assume they are putting themselves in your shoes. Don’t assume they are thinking about you at all. Fight for your information without alienating the team. Do not be afraid to be that Squeaky Wheel in order to get the best care possible!

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