Let’s Name this Thing!

I don’t have time for a big post today. But, you know what? It’s your turn anyway!

By now, those of you who have read this blog get the gist of what I’m doing here. I need to put a title on this bad boy ‘cause pretty soon I’ll be shopping for publishers. I have a few in my pocket but would love an internet brain-storming session anyway.

Here are the ones so far:

My husband came up with “Memoirs of a Gusher; My Life as a Patient”

I like that one but I’m concerned that some people won’t get it…

I came up with: “Here’s a Rope…You’re Gonna Need It”

And “Spilling My Guts; A Patient Perspective”

and "Medical Maze; My Life as a Patient"

Now it’s your turn! If I pick yours, I’ll send you the first autographed copy…how’s that for a motivation!? If that’s not enough, I’ll also put you in the acknowledgments…

How can you pass up this opportunity??

In case you’re wondering, I have sent my manuscript to one publishing house…just for funzies. I got my rejection letter last week. At first I was sad and felt all deflated but very quickly I realized that I am so much more legit now. All writers have their rejection letter stories and I have begun to collect mine! How Cool!!

Thanks for all of your continued support!

Equal Opportunity Compassion

There is a well-known truth that illness does not only affect the individual who is afflicted but has a profound impact on their family and friends as well. The sicker I got, the more pronounced were the reactions of the people around me. Often I was surprised and occasionally I was disappointed by those I loved. What I eventually came to see was that the way they treated me rarely had much to do with me at all. Illness and dying are not areas of comfort for most people. Some people were able to transcend their discomfort and reach out to me in astounding ways. Others retreated, unable to bypass their own fears. Everyone projected onto me their beliefs and acted in the ways they imagined they would like someone to behave toward them in a similar situation.

Example 1:

When I was very sick and was believed to be dying, I had family members and friends who came forward in ways that were truly remarkable. I can’t tell you if they were scared or uncomfortable because, if they were, they didn’t show it. They met me where I was and engaged me in conversations about saying goodbye and how I wanted to be remembered.

One friend in particular drove from another town to visit me once a week. She did not arrive with expectations to be entertained or to even have a good talk. She brought things to occupy herself, like sewing materials or knitting. She would sit with me in the living room and let me lead the day. Sometimes we would talk at length about life and death. Sometimes we would laugh about superficial, silly things. Sometimes we barely spoke at all and I would watch TV and nap while she read her book or worked on her latest craft project. I always looked forward to her visit and found her willingness to sit with whatever came up to be brave and admirable.

Example 2:

There were people in my life who carried with them a thick lens of their own reality. It was difficult for them to see beyond that lens and, at times, this made me feel uncomfortable and judged. I had one relative in particular who approached me with great pity in his eyes. He told me that when he saw me, so sickly and frail, his reaction was to wonder why God had let such a thing happen to me. Why was I being punished so?

I attempted to explain to him that I didn’t feel punished. In fact, I felt the opposite. I felt connected to the Divine and at peace. The pity in his eyes did not wash away, no matter how much I told him of my experience. Our very different perspectives made it difficult for me to be around him and I certainly could no longer look him in the eye.

Example 3:

There were people in my life who could not overcome their own discomfort with illness and dying. They were at one time very close to me, but as I got sicker they withdrew from my life more and more. At first I felt angry and abandoned by their retreat, but eventually I grew to believe that their fears outweighed their love. It hurt too much to be around me. They had not yet accepted their own mortality and therefore were unable to accept mine.

I had one friend who completely disappeared when I got very ill. She stopped returning calls and never came to visit. After my transplant, she quickly resurfaced and wanted to be friends. She acted as though nothing had happened and no time had passed between our girly gossip sessions. I tried to let her back in my life but I had lost a part of my trust in her. Eventually, I stopped returning her calls and our friendship fizzled out.

The Verdict:

Today, I have a very different outlook on these stories than I did at the time. There is no way to predict how those you love might react to an illness. What I discovered was that I had a certain expectation of how I should be treated and that expectation was rarely the reality. Looking back, I can see that my expectations were also entirely unfair. To expect everyone to be at ease in such a hard circumstance is unreasonable. To expect people to act exactly the way you would like them to is absurd.

I expected compassion from those in my life but what I failed to do was also give compassion. I somehow placed myself in the center of the universe (that is easy to do when facing serious illness) and forgot that others had deep feelings of their own. I felt entitled to some particular kind of attention and when I didn’t get it I allowed myself to feel victimized.

Some people will step forward. Some people will step back. Some people will judge. What was hard for me to see was that all of those actions are results of love. Just as those facing illness must receive love and compassion, so must those dealing with people facing illness. Just because you are sick, does not mean you can’t be the one to reach out to another.

While it was easiest to see the gifts brought by those willing to sit with me in my tiny illness cocoon, I see now the value of the lessons brought by those unable to do so. I am grateful to all the people in my life, no matter how their love chose to manifest.

Careful Who You Listen To…

While I am a big fan of talking to anyone you can get your hands on in order to get more information about your medical situation- that endorsement does come with a disclaimer.

Example 1:

Before my first transplant, I had a nurse that worked the night shift on the pulmonary floor who I became friends with over time. When I was in-house, he would visit my room when things were slow. Back then, I was a night owl and he almost always found me awake and ready for a good talk.

Trusting his experience as a nurse, I asked him the questions that were weighing on my mind so heavily. I was wresting with the idea of transplant and felt as though I was looking into a deep abyss, trying to find some answers. I was at the beginning of my transplant journey and was at a complete loss. His reply to my concerns was startling, to say the least.

When I asked him if he thought transplant was a good option, he almost became angry. He told me stories of those who had suffered terribly at the hands of an unsuccessful transplant. He insisted that transplants were rarely helpful and usually harmful. The bottom line was clearly that transplant was the gateway to a painful, horrible death.

I took his words to heart and played and replayed the images in my mind of the stories he told. I didn’t want to be one of those patients. I steeled myself to the idea of transplant and resolved that it was not a good choice.

It wasn’t until I got to know this man a little better that I realized how biased and one-sided his opinion had been. He hadn’t done any research into transplant success rates. He had never worked in the transplant clinic. His entire opinion was formed by the handful of transplants patients he served as a nurse on the pulmonary floor. He didn’t see the ones that weren’t sick and the ones that were out living healthy, active lives. All he knew of transplant was rejection, complications and pain. His perspective was entirely skewed.

Once I realized this, I was able to see his opinion as merely one slice of the transplant perspective pie. While what he had witnessed was real, that was far from the entire picture. I let go of the images he had planted in my mind and allowed myself to understand them as a possibility (no use for complete denial) while setting off to find the other pieces of the perspective pie.

Example 2:

While waiting for the transplant, it was a requirement to attend a bi-weekly meeting for patients and families. They called it a Support Group but it was more like an educational opportunity. There was very little crying and leaning on each other emotionally. Usually there was a speaker and when there wasn’t, people who had already had their transplant would talk about their experiences.

There was one girl in particular who had a lot to say. One girl and her mother, I should say. This duo had the gift for gab and would dominate the conversation on many occasions. She and her mother were that breed of patient and family that seemed to find their identity as a patient or the parent of a patient. I might go so far as to say they enjoyed illness on some level and delighted in being “the experts”.

This girl, Pam, had received a double lung transplant but was experiencing on again, off again rejection. She would be placed on the list for another transplant and then get well and go inactive on the list. Her journey was certainly and windy one.

Looking to the post-transplant folks for a window into the transplant experience, I often spoke with Pam and her mother about things they had been through. One story sticks out in my mind. Pam had been intibated due to some problems with her lungs and spent a few days in ICU. When she got better, the doctors pulled out her breathing tube. Pam was hungry and requested dinner from McDonald’s. Her mom obliged and Pam began to scarf down a hamburger, fries and a Diet Coke. Pam noted that it was odd that this food didn’t seem to satiate her hunger,in fact, she didn’t feel like she had eaten at all. According to Pam and her mother, it was soon discovered that, due to the breathing tube, Pam’s esophagus was not properly functioning and her food was not going into her stomach at all. According to them, it was going into her lungs instead.

This story and many of Pam’s other stories haunted me for months. Post-transplant was a mysterious world to me and all of these freakish things happening to Pam only made it more so.

Over time, I began to see that Pam and her mother were prone to exaggeration and enjoyed shocking people with their horror stories. To this day, I have no idea which part of Pam’s experiences were real and which (if any) were fabricated. One thing was surely clear, however. Listening to Pam’s stories did not help me and only served to unnerve me. I stopped engaging Pam and her mother at the support group and am happy to report that I have never had a problem with any hamburger or fries ending up in my lungs.

The Verdict:

I am not a naturally skeptical person. When someone tells me something, I will believe it long before I would ever doubt it. Others may fall on the opposite side of this spectrum and doubt it until it’s proven beyond a shadow of a doubt. There is, as always, the happy medium.

When you are getting someone’s opinion, beware of the people who have only one side to share, good or bad. The truth usually lies somewhere in the middle and keep searching until you find all parts of the perspective pie. Nobody’s experience will match your own so try to keep some distance and know that your journey will be different. It’s essential to educate yourself but dangerous to hold anyone’s opinion too valuable.

A Letter to a Very Special Doctor

Dear Doctor N,

I want you to know how much I have felt honored and privileged to be one of your patients over the last few years. You have always approached me as a human being and seem to have genuine interest in my life and my feelings. Your passion for the work you do is obvious and your compassion for your patients is astounding. No matter what happens to me, I will always feel lucky to have known you.

When I saw you in clinic last week, I was very moved by your emotion. I deeply appreciate your sadness that my life is drawing to a close. I also appreciate you being upfront and answering my questions honestly. Although six months does not seem like a lot of time, it is still good to know that I have that time left to spend with my family, say goodbye to those I love and tie up any loose ends.

While I find your compassion and concern marvelous, I wanted to share with you where we disagree. You apologized to me for not being able to find a cure for Chronic Rejection in time to save my life and all of the lives around us that are succumbing to it. There is no need for apologies or guilt. While you have dedicated your life to saving your patients, you have done an extraordinary job in an extraordinary specialty. It seems to me that you have also formed a belief along the way that death is a failure. I want you to know that, from where I stand, death is most certainly not a failure. There are many forms of healing and death is merely one of them. I hope that someday you will be able to let that feeling go.

You and your team have enabled me to live years past what I would have without your intervention. I feel lucky to have stayed on earth a little longer and do all the things I have done…while taking deep breaths! When it is time for me and I have gone, please do not feel sad that you couldn’t “fix” me. Please do not feel badly that you hadn’t done enough. Just know how much I appreciate all you have done and that I am perfectly at peace with leaving here and going home. (I like to think I am simply graduating early!)

Your sincere feelings are very appreciated. I only hope that the sadness you feel over losing many of your beloved patients does not discourage you from continuing the incredible work that you do. You are truly one in a billion.

With Great Respect and Love,

Tiffany

The Nuances of Pain Medication and Addiction

When I was in my early 20's I was dating someone whose brother got into a terrible car accident. He was hit head on by a drunk driver. Among many injuries, his legs were shattered. He was, as you may imagine, in great pain. They had him on a morphine drip with a button he could push for an extra dose of pain medication. Despite the fact that his pain was not always covered, he refused to press the button. He held a strong belief that if he took too much pain medication he would end up addicted. He felt it was better to suffer the pain of his injuries now rather than deal with going through the difficulties of a narcotic addiction later. In my life, I have witnessed varying degrees of this same idea resulting in a strong resistance to taking much needed pain medication. I have also seen the opposite occur: a festive enthusiasm about the opportunity of having narcotics available which resulted in an addiction. I have seen both sides of this coin in my own experience and have concluded that this kind of drug therapy must be approached with consciousness and responsibility.

Example 1:
A few weeks after my first transplant, I was on a schedule of Percocet every 4-5 hours. One day, I was feeling very good. The nurse came in to give me my next pain med and I refused it, telling her I was fine and didn't need it at that time. About one hour later, I began to feel some discomfort. Quickly thereafter, an intense amount of pain set in. I called the nurse and asked for that Percocet. She brought it to me and I eagerly swallowed it waiting for relief. I grimaced and waited. I cried and waited. Nothing. I called the nurse again and told her I needed more pain medication. She explained that I would need special permission from the doctor and she would give me more as soon as she heard from him. I waited another forty-five minutes before I got another dose. By the time she got to me, I thought I would go mad.
What I learned that day was something I had never known: if you let your pain get away from you, it will take a much larger dose to bring it back down to a comfortable level. I was trying to show off or be some kind of hero and I learned my lesson. Falling behind on your pain medication can have disturbing results.

Example 2:
A week or so after my G-Tube placement I was still on a narcotic for pain. While the site didn't hurt too badly, I kept taking my pain meds. At about two weeks, I was still reaching for my medication when I would feel the familiar discomfort returning. One day, as I was about to pop the pill in my mouth, I realized something. The symptoms that were causing me to reach for the bottle were no longer related to my surgery. They were the lethargy and "icky" feelings that show up when you are coming down off of the cloud of narcotic peace. It was almost like the early stages of having the flu. Once I realized this, it became crystal clear to me how people become so easily addicted to these medications. If you aren't paying attention, it would be so easy to keep taking the narcotic to medicate the effects of not taking the narcotic. I took notice that day, didn't take any more pills, and went through a day of feeling puny. I never felt the need for another pill after that. Now, I am sure to evaluate if I am taking a pain medication for the pain or for the more subtle side effects of the medication.

Example 3:
Doctors do not want their patients to be in pain. In fact, pain management has become a key piece to practicing good medicine. My doctors had all the right intentions when they sent me home after my second transplant with 3 months worth of narcotic pain medication. I never took one pill after I left the hospital. I simply didn't have that much pain. Just because your doctor sends you home with it, doesn't mean you need to use it.

The Verdict:
Dealing with pain and pain medication can be tricky. There is a balance that must be struck between not stopping too early and getting into trouble and continuing too long and getting into a different kind of trouble. The only answer can come from within. It is the patient's job to do an internal survey and ask yourself where the pain is coming from and how severe it is. Those on the outside can only estimate your needs for pain treatment based on other people's experiences. It is your job and responsibility to make the decision about that next pill based on your personal and actual situation.

On a Personal Note...

There are some people who check in on my blog and email me directly. Thank you!
Problem is, my husband and I were recently playing tennis on our Wii and he knocked a drink over on my computer...it is now dead. For those of you that are thinking me snob for not returning an email...please forgive me! My husband has a mean backhand and so I have no access to my older emails. Please write again as I am now on a new using Husband's computer.
Thanks!! :)

Those Who Know...Do What They Know

So, you've gotten the test results back and it looks like you have a health issue that needs to be addressed. It's a bit outside the scope of your general practitioner but you trust him/her enough to guide you on where to go next. Or, maybe you don't, and you go to someone recommended to you from elsewhere. Do you know that where you happen to land will most likely dictate your medical course of action?

Example:
My father has a history of clogged arteries in his heart. He has had two stents placed. Despite this history, it was still a shock when his GP informed him that he was developing a similar kind of blockage in his kidney's artery. While he was familiar with the workings of the human heart, dealing with kidney disease was well outside his knowledge base.
He began to see several doctors with different perspectives. The heart doctor was inclined to load him down with various kinds of blood pressure medications. At one point he was taking so many that he could barely stay awake.
When he sought the council of a nephrologist, he got a completely different view of his treatment options. They spoke with him about kidney transplants and dialysis. They even wanted him to sit through a tutorial on the function, cost and resources for in-home dialysis machines. In addition, they were adamant that he not bother with the surgery as the risks were too high and the success rate not very good. He left that office in shock and fear of these drastic options.
Upon the family's urging, he also visited with a top renal surgeon at the same hospital where I had my transplant. The surgeon strongly believed that he was a good candidate for this procedure and that this was the best course of action for his problem. The surgeon cited very high success rates and the ability to get off of many of the blood pressure medications post-op. In fact, he was astounded by the number of meds my father was currently taking and urged him to narrow it down to three, at most. His belief was that if the issues could not be managed on three drugs, then surgery was certainly the best option.
Three different doctors, experts in their fields, and three completely different ways to treat the same problem. My parents left each consultation with their heads spinning. One doctor seemed to indicate that my father was in serious renal failure while others indicated that he was only in the very early stages and had plenty of time to make decisions. Each one presented a strong case for why they felt it best to proceed as they advised, often at the same time discounting the treatment plans of the other practitioners. It was a very stressful and confusing time for my parents as they hacked their way through the information at hand and tried to make the best decision.

The Verdict:
Medical doctors typically believe in using medicine before surgery. Surgeons usually see the answers to your problems in surgery. A specialist will see you through that specialty's filter. When you walk into any particular office, you are walking into a certain perspective and a certain philosophy. For many medical issues, there is no concrete and universal treatment plan. Often, however, when you speak with a doctor who has a passion for what he does, it will be presented as if there is one clear choice. Although it may be overwhelming, it is important to shop around, gather up all of your options and decide for yourself which treatment plan makes the most sense to you. That may mean going with one doctor in particular and that may mean combining the expertise of more than one. As always, you are in the driver's seat.
No one would go through all the years of medical school and additional years to learn a specialty if they did not believe in what they were doing. Know that when you are getting a doctor's opinion, they are representing their training and their passion. They may have the answer for you...or they may not, despite their compelling views!

2 Donor Stories

I am a spiritual person and I believe that a human being’s spirit lives on after they die. Because of this belief system, I was intrigued by the unique connection between donor and recipient. Was it purely coincidence that I was given the lungs I received or was it some sort of cosmic plan laid out between my donors and myself before this lifetime?

This part of my story is not going to be in the book. It’s a little too “out there” for the kind of thing I am writing but I was talking about this today and it made me want to write about this topic.

After my first transplant, I wanted to feel a warm connection between myself and my donor’s spirit. I couldn’t find that warmth, however, and sort of forgot about the whole idea for a while. About six months after my transplant, I began to have these very odd feelings that were quite overwhelming. I had a tremendous sense of jealousy. For everyone and everything. I can even remember feeling jealous of myself, of the things I did last week. It was so strange and I couldn’t figure out what had triggered this new explosion of dissatisfaction and envy.

One day it hit me. These feelings were not my own. I was feeling what my donor was feeling, through these lungs. I was feeling anger, resentment and jealousy for all living beings. I could feel that she wanted to be here and she was angry that I got to live and she had to leave this earth.

I went to a friend who is a psychic. Whether you believe in that sort of thing or not, what she told me about the relationship between myself and this donor is still an interesting story. She connected with my donor and discovered the karmic link. Apparently, while she saved my life, the purpose of our relationship centered around my teaching her about death. Shortly after my transplant, I was diagnosed with a terminal illness. This was my chance (unbeknownst to me) to fulfill my end of the bargain. As the weeks went by, I grew more and more comfortable with the idea of my own mortality. After some time, I reached a deep level of acceptance. According to my friend, this process was being observed closely by my donor. Through my journey, she was able to let go of her anger and move on to the spirit world.

There was a very different karmic connection with my second transplant. I felt a great peace afterwards and had this sweet feeling that I had a constant, friendly companion by my side. I could feel my donor’s spirit rooting for me and my life began to move very smoothly. I was making powerful decisions and my life was taking shape, more so than ever before.

Once again, my psychic friend described her understanding of my connection with my donor. She saw us living another life together, this time as sisters. We lived on an island and there was a major storm, perhaps a tsunami. Our house began to flood and I drowned and my sister survived. She lived the rest of her days feeling guilt that I was gone and she got to live. My friend told me that my sister and I had made an arrangement before coming to earth that she would give me the air that she so desperately wanted me to have in the other life. She would save me from drowning in this lifetime and be my donor.

It may be coincidence, it may not be, but this transplant has been much more successful than the first. I feel a harmony that I didn’t on the first go-round. I don’t know how literal the past life stories are, but they certainly fit my experience.

I believe that we all serve a purpose in each other’s lives. It’s when we decide that we know what that purpose is that we get into trouble.

Maybe I'm not entirely crazy - check this out (which I found in this blog entry).

My Dearest Med Student,

I see the look of fear in your eyes when you come into my room. It warms my heart to meet you before you have decided that you know oceans more than I could possibly comprehend. Your sweetness makes me want to help you.

I have been on this ride for a very long time. I have lived with chronic illness, acute illness, sudden onset illness and terminal illness. I know my medications, my disease process and my options. I have learned to be an effective advocate and may offer you insight or provide you with a challenge. I tell you these things not to brag. It is to confess…despite my ability for self care, at the end of the day, you and I have to work together, and you still hold a lot of power.

I used to think a lot of doctors were stupid. I used to think a lot of doctors were cruel. I don’t think that as much anymore. I think you have taken on something that is beyond your expectations. I think the job you do is difficult beyond your wildest dreams.

Those of you who work in the medical field have quite a predicament. Taking care of the sick and the dying is a job. A job is something you do to make money and then go home. At the same time, that “job” has an impact on people that could alter the very course of their lives. I don’t envy the kind of emotional and mental balancing act it must take to work in this field. It is my opinion, however, that doing this job well means more than knowing which medications interact with other medications or how many CCs go into that syringe.

There will be a time when you will come to a crossroads. You will have gained enough knowledge to make you feel confident. You will have dealt with enough difficult patients to make you feel annoyed and maybe a bit little self-righteous. You will have a choice. You can become one of the doctors who stops listening to those they treat or remain one of the ones who do. You can disconnect from what you are doing and see the lives before you as cases, or remember that they are mothers, grandfathers, children. You can go to work to medicate people or you can help them heal. These are very different.

I have had doctors who inspired me to be a better person. I have had doctors who inspired me to fight to live longer. I have had doctors who made me want to give up and cease to exist. The influence you hold is powerful and beyond your imagination. You call this your job but, really, isn’t it so much more? Being a doctor is an awesome responsibility. It is my experience that the good ones are never so bold as to think that they are up to the task.

We have much to teach each other, you and I.

Fondly,

The Difficult Patient in Room 6543

Impermanence Can Be So Deceiving

I’ve been cranky this week. I haven’t been happy with most of the writings I’ve done for the book/blog. I’ve been tired. I have declared to my husband a few times that I was depressed.

I immediately start to feel like this new state is permanent these are all the things I will “just have to get used to”:

1. I begin to work on accepting that I my writer’s well has dried up and I’ll never write another piece that I like. The book is garbage and I should just throw in the towel.

2. I do an internal sweep of my body to see what’s going on. Am I getting sick? Are my lungs rejecting? Do I have an infection at the sight of my recent stomach surgery?

3. I feel like my thoughts are dull and uninteresting. Clearly, I have thought my last original thought.

4. Life is generally unsatisfying and surely that won’t change.

Then guess what happens? I take a nap. I talk to my friend. I walk my dog. I give myself permission to take a day or two off from writing. Like a tiny miracle, I feel better. I don’t feel great, but I do feel better.

All of my moods are impermanent so why am I convinced otherwise? Why am I so ready to accept that my current state is the one I will live with forever. I had this feeling each time I got sick and apparently, I still have this feeling when my mood shifts dramatically. Usually I am hungry or tired. Sometimes, I just need to shut up and relax!

All things are changing

God only is changeless

Some Journal Entries from '98-'99

1998-1999 Journal Entries

May 17, 1998

I must stop this madness of “proving” I have a life. I have one. It may be slower paced than some other life styles but that is how I function best. I can stop scrambling to fill the calendar as a way to prove something. I can relax.

May 25, 1998

Feeling really happy today. I pray for continued unveiling of my inner self who loves to laugh and take things as they come.

June 14, 1998

No energy. Not much hope. Feeling really gone. Lost. Hopeless. Helpless. I slept all day yesterday and can’t get out of bed today. I’m starting to accept that it is depression.

Went in the hospital about a month ago to treat what I thought was a lung infection. Turns out it was more sinuses than anything. While there, I discovered my infections are resistant to almost every drug. I also had my first bout with aspergillus fungus. I stopped taking the IV meds before they were done because the side effects were so bad. This started me thinking about how I didn’t know if I could live this way. This all just feels like too much.

To top it off, I have this nagging feeling that if I don’t “get better” and become my old perky self again, my boyfriend will lose interest and leave me. So, I’ve been fighting off my real feelings and trying and trying to be ok with things. When I’m not sleeping, I think about dying. I don’t know if I can be the happy-go-lucky person he seems to want. I feel like I’m falling apart and I don’t have the strength to deal with it. I just want to go to sleep.

January 6, 1999

Just had to quit my job because of being sick- feels like the powers that be are clearing my schedule for me. That’s fine. Luckily, this month money isn’t tight. At this point, I’m working on not looking into the distance but only ½ step ahead. My feet are always in view.

This entry was made shortly before I moved back across the country for my transplant

December 4, 1999

So many thoughts and feelings swarming in my head. For eight months now all I have done is thought and thought some more. Thought about the transplant, life after transplant and life in general. I have ridden an emotional roller coaster; from extreme joy and peace to struggling not to slip into the deep hole of depression at my feet. I have grown and changed immensely. I wonder with great interest how all this will effect me when I go back out into the “real world”.

Creamy Nugget Filling

Dear Men and Women I Have Met Lately,

When I walk down the street carrying an oxygen tank, you stare. When you see the tubes coming from my nose, you stare. You see how skinny I am (size 00), so you stare.

I don’t blame you. I really understand. I would stare too. It must seem so strange, such a mystery. Why would such a young woman be so sick?

When you came up to me in Macy’s and told me you’d pray for me, I know you meant those words to be spoken with compassion. I couldn’t help but wonder, though, how do you know that it isn’t I that should be praying for you?

When you snarled at me in Target and told me I shouldn’t have smoked so much, I know you were reacting out of fear. I couldn’t help but wonder, though, what are you doing to your body that scares you so much that you see yourself when you look at me?

When you covered your mouth and pointed at me from across the food court, I know you didn’t think I saw. I couldn’t help but wonder, though, how can people be so disconnected from another human being?

This body does not represent who I am. My mind and my soul are not sick. My mind and my soul are not tired. They are strong and vibrant and very much alive. This sick body is merely a wrapper that contains a healthy filling.

There was a time when my tank and my tubes embarrassed me. There was a time when your stares made me want to run and hide. Now I know that if you take a moment to see past the accouterments and look in my eyes, you will see who I am. The decision is yours. I can’t control if you choose to see me or see my tubes. All I can do is know who I am and let it shine through.

Equally, when I look at you, I have the same choice to make. I hope I choose to see past your wrapper and look in your eyes.

Looking Forward to Seeing You Soon,

The Skinny Girl with the Oxygen Tank Who has a Creamy Nugget Filling

Pieces of Pain

It’s my understanding, as a lay person, that pain is the tool that the body uses to tell the brain that there is a “malfunction” happening somewhere in the body…like the “engine failure” light in our car. It took me awhile to figure out that acute pain doesn’t always indicate a disaster that requires you pull over and get a tow truck and chronic pain isn’t always something that you can push through and keep on driving to the next exit. Pain can be confusing and that’s why it should be approached consciously.

I have created 4E’s of pain management to illustrate the ways pain effects us as well different things that can be done to better cope with pain.

The 4 E's are:

Education, Expectation, Emotion and Evaluation.

Education:

Educating Yourself

When you are educated about what is happening to your body, you are then able to begin an internal dialogue to soothe your fear and panic. This kind of education can come from your prior research into understanding an existing problem or it can come from asking those around you to explain what is going on. What I have found when I am experiencing unexpected pain is that, often, the fear of what may be happening is equal to the physical sensation and only causes the pain to escalate. Knowledge, or education, can be the first step in keeping yourself calm and not letting the pain get away from you. I often wonder why birthing breathing techniques are not used in cases of pain and trauma. In my experience, after I have mentally understood what is happening to my body and that I “will be ok”, conscious breathing and/or meditation is the most effective way to get my fear and, by extension, my pain under control.

Educate those around you on your experience

The more your loved ones know where you are coming from, the easier things will be for everyone involved. For example, I experience moderate to severe nausea at least once a month, usually more. When I first met my husband, he would try to understand what was happening with me, as it was happening. This created some frustration for both of us because the last thing I wanted to do was talk about nausea when I was nauseas and he was worried and really needed for me to communicate what was going on and how he could help. At some point, I got smart and began to educate him on my experiences when I wasn’t experiencing them. With the nausea, I explained that talking made me feel more nauseas and talking louder than a whisper was really out of the question. I told him things that could be helpful like, cold compresses, sleep or where to find my nausea med, Zofran. Now, when I get sick like that, he can recognize it, and ask me yes or no questions about which thing I need. He’s able to understand me and help me and I’m able to do what I need to do to get through my discomfort more comfortably!

Expectation:

I heard about an experiment once where they blindfolded people and put different kinds of tastes in their mouth…salty, sweet, sour. The first time they told them what to expect before they placed it on the tongue and, no matter how bitter or distasteful, the reactions were minimal. Then, they started giving them false information, like telling them it was going to be salty and it was really sweet. Despite the fact that what they got instead might have been more pleasant to taste, the reactions were strong and they were mostly anger or frustration.

I think of this experiment often. As a patient, it can be extremely upsetting to have a result you had not anticipated.

Let me give you an example:

When I sat down with my transplant surgeon, he told me that after the surgery I was going to feel like I got hit by a Mac truck. When I sat down with my GI doctor before a GI tube placement, which is a day procedure by the way, he told me it would feel like I got stung by a bee. When I think back on both experiences, the trauma of my G-tube was much more intense. It didn’t feel like a bee sting: it was very painful and I spent my time worrying and crying because I thought something must be wrong, this was supposed to fee like a bee sting, right?? After my transplant surgery, I did feel like I had been hit by a Mac truck, but since I was expecting it, I wasn’t worried and was much better equipped to cope with the pain. I remember telling people that I would rather have a transplant than a g-tube placement! Wow. The power of expectation. Do your best to make sure that you are getting an accurate picture of what you are facing before you proceed.

Emotions:

Emotion of Circumstance

Imagine that you are in a bad car accident and you are rushed to the ER and one of your lungs has suffered great damage. The doctors go in by cutting open your chest, pulling up your ribs and tinker around for about 8 hours, fixing your lungs. You wake up in ICU intibated and have a slow recovery…you might be in the hospital as long as a month. How many people think that they would be feeling grateful and happy about this? Why then, when I had nearly the same operation, intibation, ICU and a month long stay in the hospital were my primary emotions gratefulness and happiness? Circumstances. A car accident victim would likely be feeling sad or angry: their life had been interrupted with an unwelcome surgery and hospital stay. My life had been saved.

Think about how our recoveries might differ based on the underlying Emotion of Circumstance.

Emotion of Biochemistry

These are the emotions that are based on the body’s natural response. I have found these responses are very different for acute pain and chronic pain.

When I think about Acute Pain, I think of Fear. During the times in my life when I had acute pain, my initial reaction was always one of panic and a fear of what was happening. The only things I have found that can help with acute pain are knowledge and breathing. I find when I am in that kind of pain, thinking of anything else can be nearly impossible. Instead of distracting myself, I concentrate on keeping my breathing even and trying not to accelerate the pain with my emotional response.

When I think about Chronic Pain, I think of Depression. Chronic pain chips away at you until, slowly, over time, you become depressed and just don’t care any more. In 2003 I was dying from Chronic Rejection and was barely able to move from a chair to a coach in the same room. Although I was very sick, I knew I needed something outside of my illness to allow me to feel as though I still had purpose and direction. I focused on a few things at that time. I read books that stimulated my mind a spirit and began to feel privileged to have so much time to ponder my insides instead of going to work 40 hours a week. Although depression remained a companion, my persistence in finding ways out of the darkness allowed times of tremendous light.

One of my projects was to plan my mother’s 65^th birthday. I sent out invitations, designed the party décor and arranged for my brother to fly down for the event. I created a special game for the guests to play. I organized a caterer and my team of friends and family that came to decorate. I was the director of this big event. To this day, my mother says that is the nicest thing ever done for her. It gave her great joy, was a very fun day and gave me a great sense of purpose. Planning ways to give joy was certainly an escape from my depression. This was just one of many projects I created to give me purpose and chase away the Chronic Illness Blues.

The Emotion of Your Underlying Belief System

An underlying belief system is the foundation from which your actions and attitudes come from. You may be conscious of these belief systems, you may not be.

A common example of an underlying belief system related to pain is: “Why is God allowing this to happen to me? I must be being punished.”

Another common one is: “Why me? This isn’t fair!”

My personal belief system was at one time “I am too young to be so sick. I shouldn’t be having to deal with sickness and death yet!”

Can you see how having a belief system like this may influence your attitude? Believing that you are being punished or that you somehow got a raw deal is going to breed feelings of anger, resentment, self-pity and maybe even shame.

I can tell you that these kinds of belief systems are not helpful and don’t do much in the way of lessening your suffering! The trick is finding a new belief system, one that comes from your heart and not your head.

I have replaced my old belief system with a few new ones over the years. Sometimes I outgrow one and it doesn’t inspire me anymore. That’s when I find a new one.

My core belief system now “There is purpose in my suffering as I have learned much and can give much.”

I also function under the understanding that “my life may be short, but all that matters is that I make choices that I will be proud of when it is time for me to leave this earth.”

Those are for today, they may change next week!

Evaluation:

Evaluate Your Care

First, you must evaluate if you are getting what you need from your health care. Are you getting enough from the docs? Is your pain being managed? If not, don’t be afraid to ask my favorite question: “This isn’t working. What is another way to do this?” The objective is to get your needs met without alienating yourself from your healthcare providers. I’m sure that screaming and yelling is an option sometimes, but often I find the better choice is to state your needs, expect a new plan and if you aren’t getting the desired response, it’s time for a personnel change. That can mean talking with that person’s superior, getting referred to a specialist or find an entirely new care giver with an approach you agree with.

Evaluate your current state.

I have found that it is easy to get stuck in a pattern. I have noticed in myself that if I feel pain, let’s say I have a nagging pain in my shoulder, I will get myself into a pattern of behavior where, even when that pain has subsided, I still behave as though it hasn’t. It’s like I’m in the habit of acting like my shoulder hurts. I have also known times when my pain, usually acute, will come and go in waves. I have been reluctant to change my behavior pattern when the pain subsides because I have this feeling that people won’t understand and will think I am faking or exaggerating. Again, the key is communication.

The Verdict:

There are medical ways to address pain and personal ways to address pain. The things I have listed here are the personal, internal strategies one might employ when facing acute or chronic pain. Usually, serious pain will become central to one’s life. It may cause problems in relationships or cause a major personality change. It may make you depressed or question your purpose on earth. None of these reactions are unusual or wrong, however, it is ideal if you can seek ways to cope with your pain that will enable you to see daylight at the moment the clouds part…if even for a second.

Earth Is So Hard

When I walk through the halls of the hospital, I see so much suffering and difficulty. One phrase repeats in my head; "Earth is so hard".
The link below is to a heartbreaking and brilliant photo documentary of a young boy and his mother. The boy is dying of cancer and she is his only caregiver. This is not for the faint of heart...

Thank you to the person who took these pictures and to the amazing souls that let them be taken. I have been temporarily transported by these pictures to another level of existence.

Thanks, also, to my husband who sent me this link and then sat with me while I sobbed!

Me and My Mistakes

It has been brought to my attention that this blog and by translation, my book, has many grammatical errors. I realize this and I am sorry to those of you who find it distracting.
I am what you might call a "creative type" and when I write, my focus is on expressing myself, not using the correct syntax. I'm not justifying or defending that, just stating the facts!
I have already arranged for my work to be edited by someone who will overhaul my writing and make sure that it isn't so messy when I send it in to publishers. I won't be sending that to her until I have more material, however.
Thank you to those who have pointed out my errors and please bear with me and all my many mistakes...

Another Top 10 List

I am working on a few chapters about pain. I should be posting one tomorrow. In the meantime, these are
My Top 10 Coping Mechanisms for Dealing with Pain (besides pain meds or alternative therapies).
I'd love any other suggestions...

1. Sleep, sleep, sleep
2. Slow, even breaths
3. Talking about my frustrations
4. A distraction like TV, a movie or a video game
5. A good laugh with a funny friend
6. Tonglen Meditation (see below)
7. Getting a nice foot rub from someone I love
8. Crying
9. Music
10. Snuggling with my dog (see picture)

Tonglen is a meditation that I use often when I am in pain. There are many ways to visualize a Tonglen meditation but I will share how I do it:
Close your eyes and get as comfortable as you can.
Take 3 slow breaths.
With each breath, relax more and more.
Look within yourself and discover the place where you feel the most pain.
Picture yourself standing next to your pain. The pain may be a specific object or a blob of energy.
Pick up your pain and hold it in your hands.
Now imagine walking to a bank. Enter the bank and go up to a teller.
Hand the pain to the teller and inform him/her that you would like to make a deposit into the account where pain is kept.
Let the teller take the pain out of your hands.
Say to her and yourself; "I offer this pain to all who are suffering with the same kind of pain, now or anytime in the future. May they suffer less because I suffered consciously today."
Now picture a person, it's probably not a person you know, suffering with the same kind of pain you are experiencing.
Picture them coming to that bank and making a withdrawal from that account.
Picture them being soothed and their pain lessening.
They suffered less because you suffered consciously today.
Repeat: "I offer this pain to all who are suffering with the same kind of pain, now or anytime in the future. May they suffer less because I suffered consciously today."

For some people, this meditation may seem strange. For me, it was incredibly empowering to feel that, despite the fact that I could do nothing more than lay on the couch in pain, my suffering was serving a purpose. Every time I have done this meditation, my suffering has decreased.

Just A Good Ole Fashioned Blog Entry

A few months ago, we had a woman at our office quit unexpectedly. She had been there for ages and had deep roots with many of the other employees. In addition, she had been through a very physically traumatic event and struggled with pain and limitations. When she left it was dramatic and traumatic for all that knew her. At home she had many, many animals to care for which required buckets of time and money. I wondered to myself how she would manage without this job and this group of individuals to support her.
Today I heard that she has a new job. Not only is she managing, she seems to be flourishing. She loves her new employer and believes she will work there until the day she retires. She has given away all of the old work clothes and has happily renounced her old definition of self as a technician. She has let go of old habits and safety zones and is flying.
This kind of story makes me reflect on my own life. What am I holding onto that would better be let go of? It's so easy to get caught in the "But this (place, person, job) provides me x,y, and z so I can't leave". What if I could still have x, y and z along with q, r and s? Shouldn't I raise my bar and go for everything I want?
Then I get caught in the next thought loop of thinking "But am I just experiencing the grass-is-always-greener syndrome?" Certainly, I have had times when I thought I was letting go to move on to bigger and better only to find that what I had was pretty darn great and my expectations were just totally out of whack. Whoops!
I'd like to end this post with a nice conclusion but I have none. All I have decided to do is work for the life I want while running parallel with the life I'd prefer to dump and hope the former wins the race. Am I being wimpy or sensible?

The Unpredictable ER

Whether you have acute symptoms in need of immediate attention, want to have something checked out during non-clinic hours or have an exacerbation of a chronic illness, chances are you will at some point land in the same place: The Emergency Room. This is a place with so much activity, so many life stories converging, that they have made many hit TV shows about it. While I have met very few George Clooneys during my visits, I can see why this is a perfect setting for a great drama (or comedy, for that matter). This is the place in the hospital where anything goes. Car accident victims, gun shot wounds and people having heart attacks are all brought here. So is Fannie Falls A Lot with her ninth sprained wrist, as well as Penelope Puker who has the flu. The list of characters goes on and on but, suffice to say, it is usually a bit chaotic.

Example 1:

It was 3pm on Sunday and I had felt sick since Friday night. If it weren’t for the fever I would have waited for Monday but I don’t have the luxury of taking any chances with my health. Before leaving my house for the ER, I was sure to call my doctors, tell them when I planned to arrive and had them call ahead with orders and/or medications. The attending was not available, so I requested to speak with the Resident in charge. The hope was that this type of pre-planning would get the wheels spinning (and maybe some tests ordered) before I even got there. This was only a hope.

The first thing I encountered at the ER (besides the full parking lot) was the reception desk. I had to remind myself that an ER is not first come, first served. The most severe problems are seen first. I used to be shy when I came in and would only list my symptoms as my reason for being seen. What I have learned is that it’s important to give the people up front a more well-rounded view of my situation. That will help them understand the level of urgency in the situation and may help me get seen sooner. I don’t mean to suggest that I lie or exaggerate. I simply list pertinent information that will alert them to my needs. For example, I am sure to let them know that in addition to my fever, I am a transplant patient and am immune-suppressed. Because of this, they work to get me in a room so that I won’t have to be exposed to other people’s illnesses in the waiting room.

Once I am in the back, it is important for me to get the ER doctors to consult with my team. Most physicians are happy to do so, but on this trip, the ER docs resented outside influences and wanted to steer the ship. For someone with my kind of history, my medical care is too complicated for it to not be handled by a specialist. They were dragging their feet around contacting my doctors, so I was sure to do it myself and got them in the process as soon as possible.

Eventually, we were all on the same page and I was able to get the benefit of a functioning ER, one that worked in cooperation and understanding of my primary care doctors’ treatment plan.

Example 2:

Some of the nicest, most talented nurses I have ever known were ones I met in the Emergency Room. Unfortunately, there are always exceptions.

I came into the ER one summer with a high fever I hadn’t been able to control. I knew I would be admitted but the team wanted me to be seen at the ER until a bed was available. During the routine questions, I told my nurse that I had taken 4 Tylenol to try and bring down my fever. She was appalled. She scolded me and told me I would have to wait a long time to get any more. I certainly understood why taking 4 Tylenol was bad for me and I allowed her to make me feel like I had done something very wrong. I sat quietly while my fever returned with a vengeance.

The hospital was packed full and a bed would not be ready any time soon. I got to feeling very poorly and asked for someone to take my temperature. It was 101. I requested some Tylenol and my nurse came in with her hair on fire. She told me I would have to wait for another six hours before I could have another one. She wrapped me in blankets and told me again how wrong I was to have taken so many Tylenol.

I felt very vulnerable and very scared. I knew that a fever could cause my lungs to go into rejection. I knew I shouldn’t let my fever continue but I was too weak to fight this woman.

By the time they found me a bed, my fever was 103.9. My doctors didn’t care if I had swallowed a bottle of pills that day; the priority was to reduce my fever. The team was almost as upset with the nurse as I was. For my particular health issues, that kind of fever had the potential for devastating results.

I learned that I should never again doubt what I know and let myself be guilted into something. The solution to that problem was easy but I was too timid to carry it through. I should have paged my doctors and told them what was happening. She was uninformed on the delicate nature of my disease, she would not listen to my reason and I should have found a way to take care of myself despite that.

The Verdict:

Emergency Medicine has to be one of the most difficult specialties to work in. It is a place where the nurses and doctors need to know a little about a lot of things. It is a place of great distress and trauma. It is a place where people go when they have nowhere else to be seen. There have been times when I am in and out of the ER quickly and with very few bumps in the road. There are times that I have spent days in the ER waiting for a bed in the hospital. I have had very positive experiences and very negative experiences. One fact remains, however: the ER is an essential piece of the medical system pie.

That said, for those of us with specific problems, it is the luck of the draw as to whether those caring for you in the ER will know enough about your needs to treat you correctly. This is the place to stand up and flex your patient advocacy muscles. You may be delighted to find a doctor or nurse that knows a great deal about your specific ailment or you may find that you will be doing a lot of on-the-spot-educating. Bottom line: be prepared for anything.

I think I'm taking the day off...

It's a rainy Sunday...usually a perfect day for writing. Today, however, I am feeling pretty weary of thinking/writing about myself! I'm gonna take the day off and come back refreshed.
Guitar Hero calls my name...

Vintage

Although everything I have written in these posts is true, sometimes I feel that they lack the true emotion that I felt when I was actually experiencing the things I discuss. I am no longer sick and I can't always remember how I felt about things when I was going through my hardships. I have started looking through my many journals and have found one consistency: inconsistency. I had days when I was very optimistic, days of being grateful and days of being completely fed up. Despite how vulnerable it makes me feel, I have decided to share parts of my journals, just snapshots. It's my hope that reading the entries will serve as a window into the private thoughts and feelings of one facing or overcoming illness. I will present them by year as I often didn't write the date. I will start with the earliest: 1997-1998. I was listed for a lung transplant but, in my heart, had no intention of getting one. I was working to keep myself healthy enough (emotionally, spiritually and physically) to avoid the surgery altogether. I was living on the opposite coast as my family and that sometimes made me feel very empowered and other days made me feel very alone.
I would love any feedback as to whether or not these kinds of journal entries are helpful and should be included in the book. Thanks!

Pre-Transplant Journal

Sometime in 1997 or 1998

My fear makes me stand in the way of my true self being able to speak. I will put fear aside and listen to the voice that needs to be heard.

I will not invent my problems about the future. I will only live in the now.

I do not need recognition or congratulations from others to know my spiritual growth. I will be my own cheering section.

From today on, I will allow myself to recognize what is too much for me. I will give myself permission to walk away when I am tired, speak out when I am hurt and hug when I am happy. I will listen to me. I will take care of me. I will set limits with others and let go of all the guilt that brings. I will have the courage to act on what I need.

Speaking my truth can cost me friends or jobs. Not speaking my truth can cost me my truth. I will give myself permission to change my mind later but speak my mind now.

I must let go of the fantasy that I can fix other people’s lives. I may sometimes help to guide or illuminate but I am not capable of healing another. Only they can heal themselves. Only I can heal me.

I can’t breathe very well so I can’t take care of myself. I can’t be myself when I feel this way. And the scary, scary, scary part of it is that I see no relief. Transplant? I really don’t want that. Alternative therapies? I have so little energy for that. Excuses. Such a fine line between excuses and being realistic. How much is it ok to let myself wallow and when do I need to start getting tough on myself?

All I feel like doing today is sleeping or staring off into space. I don’t want to think about my health anymore. I don’t want to be responsible for eating anymore. I don’t want to be strong anymore. I don’t want to get dressed. I don’t want to do laundry. I don’t want to deal with the gum stuck down in my bathroom sink. I don’t want to die…I just want a vacation from my problems. I want a miracle so I don’t have to work so hard.

So, with CF making an appearance in so many of my daily choices, how do I take back control of my life so I don’t feel like I’m at the sidelines while CF plays the game? CF does not own me but it sure feels like it rents me!

I must not confuse fear to move forward with lack of desire!

This disease ticks in my head like the ticking dynamite in a suspense movie. Tick, tick, ten more years, tick, more pain, more discomfort, tick, tick, oxygen tanks should be rolling in soon, tick…don’t even bother time is almost up.

Nobody knows how close these thoughts are to my consciousness every waking moment. If I’m not thinking about my mortality, whatever I am thinking about will soon bring me right back to it. I’m scared out of my mind.

I would like to know what it feels like to run for a long time, stop and then be able to catch your breath by sucking in deeply a few times.

As I get older, I think about things in terms of how hard will the task be to accomplish without having a coughing fit.

CF always has the last laugh.

I saw the image of two lovers tightly holding hands, seemingly afraid to let go. They held on as if their lives depended on it. I glanced into the corner and wished I could hold his hand like that. Because I need a life-line too.

The Sick World and The Well World

There was a time when I was honored to be a member of a very private world. I call this “The Sick World”. This is a place that is filled with people who are living their lives day to day, doctor appointment to doctor appointment, and grappling with all that it means to be alive. When you live in The Sick World, there is a certain understanding among its residents. This same understanding is difficult to find when you are out in “The Well World”. There is a depth to this community, a vibrating knowledge of the fragility and value of life. I am proud to say that I once lived in The Sick World.

When I lived in The Sick World, I was no longer interested in what I once was. It was as if I had moved to another planet. I didn’t care about who was playing in the Superbowl or which celebrity was dating another celebrity. I didn’t even care much about the state of the country, as it rarely had an impact on my little universe. People would tell me their problems and I could see with an indescribable understanding just how and why they were standing in their own way to reaching greatness. It was as if I had been given a map to living; it all seemed so obvious. The only problem was that I didn’t have the physical ability to engage in it very much myself.

The level of insight could be satisfying and my level of non-attachment to the dramas of this life were freeing. However, it was also stressful for me when visitors from The Well World approached me with the expectation to care about all the things they cared about and to the same degree. So few people spoke, or even understood, my language; the language spoken in The Sick World. I have created two lists to help illustrate how different the focus is in each world. I will start with The Well World.

The Top 10 Things that People in the Well –World Occupy Their Thoughts With:

1. Family/Children

2. Marriage (getting it, keeping it, dissolving it)

3. Job/Money

4. Physical Appearance

5. Traveling

6. Body (exercise, diet)

7. Friends, socializing

8. Entertainment: where should we go tonight?

9. State of the world, politics

10. Hobbies

Here is my Top 10 List of things I thought about when I lived in the Sick World:

The top 4 are the same, but with a slight twist.

1. Family/Friends and how will they cope with my death
2. Marriage-surviving w/less conflict, feeling trapped
3. Body: worry, constant inventory, acute awareness
4. My physical appearance, embarrassed to be carrying my oxygen tank and tubes

I stopped thinking about socializing, where I would go that night, the state of the world and my hobbies. Replacing those were:

5. Stairs: Things like stairs and inclines began to become a part of how I planned my day. If I knew there were stairs where I was going I had to give myself plenty of extra time to get up them, or find an alternate route. Sometimes, I still see a flight of stairs and fill with dread…I have to remind myself that they are no longer an obstacle for me!!

6. Appointments, the landmarks of my life!

7. Getting to another room, getting food

8. A conversation

9. TV

10. My feelings

When I look at those lists now, I can feel sad for myself that I lived in The Sick World. It seems so small from this vantage point. There is a certain depth and truth to The Sick World but I don’t suggest that people living in The Sick World have chosen that address, nor would they consider themselves happy to be a permanent resident. Those that live in The Sick World usually strive to return to The Well World. I envied those that occupied time contemplating buying a new house or where they would go on the next vacation. There were times that I resented the simplicity of my life and yearned for the complexity of The Well World.

Despite its hardships, there is something to be said for a world where That Which Is Important remains clear and is always at the surface. It is my challenge now to somehow hold on to some of the clarity of the Sick World while enjoying the physical freedom of The Well World. This is a challenge of which I have mostly failed. There is beauty and heartache in both worlds. The trick is learning from each other and valuing what we have right now.

To all of those living in the private, misunderstood Sick World, may your whispers be heard so that others can learn about That Which is Important. To all of those living in the dominant and often oblivious Well World, may you open your eyes to the lessons of the Sick World and slow down, calm down and appreciate the deep breaths you are able to take.

The Diagnosis

There are pivotal moments in everyone’s life when something happens and they are no longer headed in the same direction they were only moments before. This can happen when you fall in love, when you get a new job or when you are diagnosed with a new illness.

Example 1:

I was too young to remember my first diagnosis of Cystic Fibrosis. I was 6 months old and was not going to the bathroom properly. This tipped off the doctors and they did a sweat test on me that came back positive for CF.

I’ll never forget the story my mother told me of her reaction. In fact, its image is so burned into my brain that I feel like I have a memory of it. She said that when she got home from the doctor she held me and cried for hours. She just wandered around the house whispering over and over “My baby, my baby”. I was the fourth child and my mother felt sure that she had worked out most of the child-rearing kinks and I was to be “the perfect child”. My diagnosis took this dream away and changed both of our lives forever.

There is such a void of knowing when you are in the early stages of facing an illness like CF. Learning all the new medications, all the ways to administer them and figuring out what possibilities the future may hold is overwhelming, to put it mildly. At the time of my diagnosis, the life expectancy of a CFer was around twelve years old. My mother decided that she would compensate for my short and difficult life by never telling me “no”. This approach worked fine until she noticed I had become a raging brat by the age of 6! She started reining me in at that point and saved me from myself.

I feel a tremendous sadness for my parents when I think of that time in our lives. How scary it must have been for them and how many parental hopes for my life they must have had to throw away. As much as my life has been a roller-coaster, they have ridden it with me the entire way. Being the parent of a sick child never ends. I think they did an amazing job in a very difficult circumstance. I have eternal gratitude for all that they have done and continue to do to make my life as comfortable and safe as possible.

Example 2:

When I received my diagnosis of Chronic Rejection, I was 2 years post-transplant (I was about 29). My lung function had been falling and, after countless tests, the transplant team ruled out every other possibility. They made a clinical diagnosis of the illness and, despite my dropping numbers, I was completely shocked. I really didn’t know much about Chronic Rejection except that it killed you. (That is less the case now, there are more things that can be done to treat it.)

My initial reaction was one of cold panic. I felt a wave of nausea pass through me and I fought to stay focused on what the doctors were saying. I felt like I was underwater and I could barely make out their words.

I don’t think I cried about it right away, even when I got home. All I could feel was fear and confusion; sadness hadn’t made its way to the top yet. The only thing that I wanted to know was “What do I do now?” Should I quit working even though I don’t feel that poorly yet? Should I pretend like nothing happened and just forge onward as usual? How long do I have? How will I die? What will it feel like when things get worse? How do I live with this new information? And the big question: “Could God really do this so soon after my transplant?” That, perhaps, was the hardest thing to wrap my mind around.

Acceptance was a slow process and it involved educating my self on the disease process as well as letting myself take it one moment at a time. I no longer had the luxury of long-term thinking and planning. All I could depend on was how things were going on that particular day with no ability to predict how tomorrow would be. I had to mourn my future plans and embrace the present. It was a difficult lesson to master.

I attempted to stay in school for a time, but as the illness progressed it became more and more difficult. I eventually dropped out and got a job as a professional pet sitter. This was satisfying, albeit physically challenging, and I did it for about a year. At that point, I was very ill and moved to another town to be closer to my family. The day I moved, I also started using oxygen around the clock. I got sicker and sicker until my second transplant one year later.

The Verdict:

One minute we are sick, getting tests and hoping its something that is easily treatable so that we don’t have to take too much time out of our lives to deal with it. The next minute that sickness has been made into a diagnosis and our busy lives drop away and all we want to do is survive. Making that mental and emotional transition is arduous and tangled. I can’t really think of anything else in this world that has changed my life as dramatically as a new diagnosis. There is a great loss that comes from letting go of the things that illness takes away. The hope I can offer is that there is an opportunity, after the mourning, to learn profound lessons of life and self.

In the Bed Vs. By the Bed

I have always felt that I would rather be in the bed than be the one standing by the bed. It seems like it would be so scary and there would be such an immense feeling of powerlessness. I have only had minimal experiences as a caregiver but have worked for Hospice and studied them a little bit. As always, my views on this topic come mostly from the patient perspective.

Experience 1:

I was called to a Hospice situation one day to provide respite for the family. I was met at the main house with a very weird attitude. Not unkind, just not the usual warmth and grief. I was told that my patient was in the guest house and that I should go over there instead. I walked there unescorted and was promptly greeted by two women. Before I could finish introducing myself and enquiring about the patient, they had already launched into the family drama that surrounded my patient.

Apparently, the woman in the first house was their sister/aunt and they hated her. The mother and daughter team were visiting from the west coast to see Mom for the last time. The real reason I was called there was to make sure that The Duo could leave and The Sister could enter without actually having to see each other. I was there to provide air traffic control.

I was introduced to the patient and she was barely conscious. She was on a lot of morphine and had no interest in me. I sat by her bed and made sure that she was ok while The Sister and The Duo traded places. About 5 minutes after the Mother/Daughter left, Sister entered with two of her children who were around 6-10 years old.

Sister visited with her mom and proceeded to force her child to kiss grandma. The child was scared and grandma was unconscious. Eventually my patient woke up and Sister immediately held her hand and began to tell her that she and The Duo were still fighting and that they would never get along. Mom whispered “I love you” and fell back to sleep.

Sister and her children soon left and I sat with the sleeping patient for another half hour or so. The phone rang and I answered, as instructed. It was The Duo and they were ready to come back. They needed to know if the coast was clear. I told them it was and they said they were on their way. They called about two more times on the way back from town to make 100% sure that Sister really wasn’t there anymore.

As soon as they crossed over the threshold, they resumed Sister bashing. I stood listening for about ten more minutes before I told them I needed to leave. They asked how Mom was and wanted to talk more about Sister. I again excused myself and almost ran to the car.

I cried all the way home and felt sick for another few days. If I had to pick one thing to have when I was dying it would be peace. Peace in my home, peace in my relationships and peace in my heart. That poor woman was days away from death and her children still wanted her to play the role of mediator and mother. Her job was done and it was their turn to provide the nurturing. They couldn’t see past their own agendas to give their mother that precious gift.

My patient died two days after my visit. I wish her eternal peace and I wish her family healing.

Example 2:

I have a lot of pride. I don’t like to wear hospital gowns, I don’t like to be nurse-handled and I don’t like pity. Before my transplants, long stays in the hospital were routine. I would go in with horrible lung infections and be given powerful IV antibiotics for weeks. I’m not sure which makes you feel worse, the infection or the antibiotics. There were many times when I felt too weak and too sick to take a shower. My mother would offer to wash my hair and I would always refuse. It just felt too vulnerable and my pride prevailed over the griminess I was feeling.

One day, however, I guess I had reached my limit. I told my mom I wanted to wash my hair somehow, someway. She immediately sprung into action and began putting together an elaborate system of buckets, pitchers and pillows. I positioned myself at the end of the bed and she poured water over my hair and it fell into the bucket below. She scrubbed my hair and it was as if I had been reborn! Never underestimate a clean head of hair; it can make you feel so much better.

Over the years, we have perfected this technique and do it often. (We now use a chair tilted by the shower.) The lesson learned, other than the healing powers of shampoo, is that this kind of activity is equally helpful for both parties. I got the obvious benefits but it was clear to me that my mother benefited too. She got to do something to make her daughter feel better. Those kinds of opportunities were not common. It brought us closer together and I am so thankful I pushed my pride aside so that I could let her help me. Sometimes the nicest thing a patient can do for the ones caring for them is to do just that.

My Advice to Patients:

When you are sick, it is very easy to fall into the pattern of constantly focusing on yourself and your current state. Being a caregiver is a very stressful and sometimes horrible position to be in. Remember to be aware that your caregivers have difficulties too. Remember that they can burn out and need some balance (a.k.a. get away from you). Don’t forget to look outside yourself and see all that they do for you and share your gratitude. Most importantly, be honest with yourself. Could you get up and get that drink of water yourself but you’ve just fallen into the habit of asking for things? Is your current complaint bad enough that you need to share it? If not, there’s nothing wrong with keeping it to yourself. Have you asked your loved one how they are doing today?

There is a fine balance between getting the support you need and becoming an overwhelming, all-consuming drain on those you love. Do for yourself when you can, respectfully ask for something when you can’t. There will certainly be times of stress and crisis when being polite may fly out the window, but remaining conscious of how hard those around you are working (emotionally and physically) can only be beneficial to everyone involved.

My Top 10

I love this post from Fat Doctor: http://fatdoctor.blogspot.com/2007/04/cringe.html
She wrote the Top 10 things that patients say that make her cringe.
Not to be a copy-cat but I had to join in the fun.

Top 10 Actual Quotes from Medical Professionals
That Made Me Want to Run Screaming from the Room

1. "It's been a long time since I've dealt with real patients."

2. Her: "You have good veins, right?" Me: "No." Her (sarcastically): "Oh, grrrreeeat!"

3. "How do you spell Cystic?"

4. "Let me go ask what this test is."

5. "I don't remember our conversation. I was on pain meds."

6. "Did you pass gas from your bottom?"

7. "You don't have any pain medication ordered so you can't have any."

8. "We didn't realize you had that procedure done. We'll need to run that test again."

9. "We may need to do chemo. We'll call you later and let you know."

10. "I hate this f***ing rotation!"

The Lazy Scale

I knew a girl who was waiting for a transplant and, like most of us, she was very ill. She and her mother were tightly wound together and her mother went with her everywhere. I remember a day when the girl was in the waiting room with a soda sitting on a table directly in front of her. She turned to her mother and asked her to hand her the Coke. I was astounded that her mother obliged and reached over her daughter to lean forward and hand her the drink that was nearly within arm’s reach.

I also know a girl who had just had chemo, had contracted a terrible lung infection and insisted on going to work anyway. She didn’t want to be a “wimp”.

There are two sides to the Lazy Scale and it’s not always easy to know which way to tip it.

Example 1:

I don’t know that you could ever call me “wimpy” but you certainly could get away with calling me spoiled. Growing up, I had very little domestic chores due to my illness. My mother waited on me in hopes that making things like eating convenient, that I would do more of it. When I was sick, my parents would move heaven and earth to get me what I wanted just to make me feel better, even for a second. (I have also observed this dynamic in many of my chronically ill friends.)

Today, I do very little around the house. My husband does the vast majority of cleaning, laundry and cooking. There are times when I will pass on doing something because it requires me to get off the couch. I have battled a shopping addiction that put me in debt around $10,000 because I didn’t know how to tell myself “no” when I really wanted that new shirt or pair of shoes.

I am aware that none of this is making me look very good. I can only hope that my confessions here have not made you so disgusted that you click away never to return. The reality is, however, that these patterns were established so early in life that I have to work very hard to break them.

There is a fine line between indulging oneself because you are sick and crossing that line into entitlement. There have been areas where I have been able to change my ways. I no longer shop as though I am rich. I worked hard to take away my underlying belief that I deserve whatever material thing I see because it’s shiny, I want it and I've had a hard life. I am no longer in debt and it’s been that way for many years.

As for helping around the house more…I really need to work on that if I don’t want a divorce.

In my daily life, I am very driven and unbelievably lazy at the same time. I often beat myself up for the lazy part but at other times I think I am being too harsh and excuse it as “relaxing”. Because of my history, I can often have internal arguments about which way I fall on the Lazy Scale. Neither side is usually the victor; confusion wins.

Example 2:

There is a flip side on the Lazy Scale. There is the part of me (and I have also observed this trend in many of my chronically ill friends) that will take on too much and meet demands that need not be met.

This is especially evident when it comes to my job. There have been times when I was in full-blown pneumonia and still insisted on going to work. There have been times when I was experiencing acute rejection and I scheduled my injections of massive doses of IV steroids around my work schedule. Keep in mind, these were not jobs in which I was responsible for saving the world. These were low-paying receptionist jobs, deli clerk jobs or pet sitting jobs. For all of these, it would have been perfectly acceptable to call in sick.

There is a feeling inside of me that the delicate balance of the universe will crumble if I stay home from work one day.

There is a feeling inside of me that, in order to play the role of “working person”, I must never succumb to illness. Perhaps this comes from a feeling of inadequacy. Perhaps this comes from a fierce loyalty to my employer. Perhaps this comes from a deep resistance to admitting my physical short-comings. My guess is that it is a combination of all of these.

The Verdict:

There is strange dichotomy that pulls at those of us that have lived a long time with illness. There are the patterns that keep us from becoming fully independent and those that encourage us to push beyond a necessary limit. All that we can do is work to unravel the patterns that keep us from fully engaging in our lives and focus on how to care for ourselves when the body needs rest and healing.