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.

A Letter to My Beloved Transplant Coordinator

Dear Vicky,

There was a time shortly after my diagnosis of chronic rejection that I was completely positive that I would never go through another lung transplant. I had my shot at life, I was going to die and that was okay. I think I had been dealing with the disease for about a year when it suddenly hit me that I wanted to do anything I could to try and stay on this planet a little longer. I still had things I wanted to do! That’s when I decided to make an appointment to talk to the team about getting a second transplant.

I did just that. I met with the head surgeon and he explained the elevated risks of a second go-round. After that I met with your predecessor, Betty. She told me horror stories about second transplants in general and how I should not even bother. She told me it was a bad idea and that I should put it out of my mind. I went home and prepared to die without hope of another life-saving surgery.

Months later Betty quit and you came on board. I was home when you called me to introduce yourself but I didn’t answer the phone. (By that point I didn’t really see what more the team could offer me and I avoided contact.) I listened to your voice over the answering machine and had very little interest in getting to know this new transplant coordinator.

When I came in for my next appointment at the clinic you were there. I was very angry because I didn’t understand why I needed to drag myself, my oxygen tanks and all my tubing over to the hospital when I was dying and there was nothing more that could be done. From my position, getting there was difficult, being there was pointless and getting home was exhausting. I resented those visits and was cantankerous towards all that entered my little exam room. You were no exception.

That is what is so mysterious to me, even to this day. How did you do it? How did you walk into the room, encounter my snarling and spitting and see right past it? How did you look inside me and see my pain, hurt and fear? Could you somehow see how desperately I wanted to live? What made you decide to fight for me and help me get on the list for a second transplant?

I have no answers to these questions. What I know is that you moved a few mountains out of the way and cleared the path for me to pursue my dream of living another day. It is because of you and your instincts to help me that I am here, two new lungs and years later. It is because of you that I have been able to fall in love with the man of my dreams. It is because of you that I am able to write this book. It is because of you that I am able to breath in spring, fall, winter and summer. It is because of you that I look forward to another tomorrow. How do I properly express gratitude for the monumental role you have played in my entire existence? There simply is no way.

I am not alone in this dilemma. How many people can say these same words to you? How does that feel, to have made such a dramatic impact on so many lives?

Vicky, all that I am able to offer you is the hope and prayer that God will see all that you have done and reward you beyond all expectation. May you be blessed a thousand fold in this life and any that follow. May all the good you have done be done to you. May all the compassion you have shown be given to you when you need it most. My passionate prayer is that your own joy will be proportional to the love you have given so many patients. I offer this prayer with sincerity and humility.

Thank you so much for moving here and taking Betty’s place. No more post-it notes!

With All My Breath,

Tiffany

Getting Your PhD in Patientology

I’m sorry to be the one to break the news but: gone are the days when Doctors Know All and we are at their mercy. When it comes to your personal care, it is your job to gather all the information you can on the consequences of different procedures, your medications and your own body. That is not a suggestion, it is a necessity, and could save your life.

Example 1:

There was a time when I had a transplant coordinator named Betty that left much to be desired. She primarily organized her patient’s care with post-it notes and always chose the path that required the least amount of work for her.

I was on a downward spiral after recently being diagnosed with a serious problem; chronic rejection. My lung function was dropping almost daily and the doctors were struggling to get me stabilized. In addition, I was having persistent fevers that were concerning because if my body’s immune response were too high, I could also go into another form of rejection called acute rejection. I went to clinic to address the fevers and was seen by a doctor that hadn’t been on the team long and, in the end, didn’t stay long either. His analysis was that the fevers were being caused by my chronic sinus infections and his solution was sinus surgery.

Based on his conclusion, the wheels began turning to set me up for the surgery. I say the ENT doctor and he felt it would be a good idea, based on my history, to do the surgery but not a necessity. We went forward and made the surgery appointment.

The day before I was to go in, I had to go into the hospital for a battery of pre-surgery tests. I had one question on my mind that had never been answered: If my lung function was continuing to drop, wouldn’t being intibated and going under anesthesia make that problem worse? I knew that intibation and anesthesia was difficult to recover from when one was having lung issues.

The tests I had to have done took all day and were at a variety of different places throughout the hospital. At each stop I asked the caregiver when I would be able to see a doctor and ask them my question. The answer seemed to always be “later”. Finally, at nearly 5pm, I was at the final stop. I asked the nurse my question and for the first time that day her response was one of concern. She felt I had a valid question and encouraged me to contact my transplant coordinator. She gave me a phone and I called. Betty answered, to my surprise, and I told her my thoughts. She exclaimed that she had a note on her desk to call me and that she had meant to tell me that I shouldn’t have the sinus surgery until my lung function had stabilized. The surgery was canceled and I went home. I was only hours away from going under anesthesia.

What would have happened if I didn’t know that information and pushed for the answer? Luckily, we will never know but my fevers resolved and I never did have the sinus surgery.

Example 2:

After transplant, there are many, many medications a patient has to take. Some of them have side effects and some of them are counter-indicated. The major immunosuppressant can not be taken with any ibuprofen product because the two together can cause kidney failure. This is something they try to teach you when you are learning your medications but a friend of mine missed that lesson.

After his surgery, he was having back pain and began to take Aleve to help. A few days later, his lower back began to hurt and the pain extended all the way down the back of his thighs. Fortunately, he mentioned this at a clinic visit and it was quickly discovered that he was in early stage renal failure. They were able to treat him and reverse the effects of the ibuprofen interaction, but he was shaken.

This was not the fault of the doctors or nurses. My friend failed to take in crucial information that was provided to him. It can be easy to become complacent with your care and not think about all the details. That approach can clearly lead to a world of trouble.

Example 3:

I like to think of myself as a unique individual, but when it comes to my body that isn’t really a compliment. I can react to things very differently than “most people”. Some of that has to do with my emotional history, some has to do with my varying pain tolerance and some has to do with my personal body chemistry. Only I can know how I will handle certain medications and procedures and I have to somehow find ways to communicate these idiosyncrasies to those caring for me.

At one point, I had a central line called a Port-a-Cath. This was a wonderful device that allowed me to get IV medications with minimal pain and was not invasive. After my first transplant, this catheter was taken out as it posed a risk of infection. From that point on, I required a PIC line whenever I needed IV medications. This catheter is placed above the elbow and is fed in across the chest just stopping short before it reaches your heart. For most people, apparently, this is “no big deal”. For me it is incredibly painful. Between the existing scar tissue from past blood draws and IV catheters and the fact that I am very small, this procedure is at the top of my “most hated” list.

When it comes to getting a PIC line placed, I have become a Pavlovian dog. As soon as they wheel me into the room where it is done I start to feel cold, tremble and cry uncontrollably. This is not a welcoming site to those involved in doing the procedure and makes it all the more traumatic for me. At times I have even had this reaction when I am simply filling out the paperwork.

There have been doctors that gave me PIC lines that felt compassion for me. There have been doctors that have told me I shouldn’t be so upset. There have been doctors that did it very well and it turned out to be “not so bad”. There were doctors that did it very forcefully and I was in terrible pain for days afterwards. No matter what the circumstances, my reaction remains the same. I am scarred for life when it comes to PIC lines.

So what do I do? It is my job to convince them of the severity of my problem and make sure that I am provided with the proper pre-medication. I need to be very sedated before I go in that room. It can take time to convince someone that I need this pre-medication as this is not a normal request. Eventually, I may have to declare that I will not do it without the sedation. If that doesn’t work, it is then necessary to involve my transplant doctors in the debate. Usually, it doesn’t come to that but, regardless, I will not back down from this demand. It’s my body and I know it better than anyone else. End of story.

The Verdict:

Everyone knows that “Knowledge is Power”. When it comes to healthcare, it can enhance or even save your life. The more you can learn about your illness and the treatments, the better able you will be to make informed decisions and ask the right questions. Information can be gathered from other patients, the internet, reading books and asking lots and lots of questions to the medical professionals around you. Take control, knowledge is the first key in being an effective Patient Advocate.

Finding the Dragon Shrinker

One of the greatest challenges of being ill is finding someone to talk to about what you are truly experiencing. When I was very sick, I was surrounded by people who loved me but I had an overwhelming feeling that I couldn’t be completely honest with them about my deepest thoughts and emotions. My feelings were complicated and heavy; I felt too heavy to be confessed to those I loved. I simply didn’t want them to carry my burdens.

This is why I sought out a good therapist. I needed to talk to someone that could handle my situation and who better than a professional? What I eventually found was that a good therapist can save your life and a bad one can make it worse.

Experience 1:

I was only 16 but I wanted to talk to someone about having CF. I needed to process my thoughts of dying and the feelings of being different. My parents got me a shrink and I began to see him once a week.

Despite my deep desire to talk, I was an ornery teenager and was unwilling to open myself up to just anyone. This therapist had the Stare-at-the-Patient-Until-They-Talk approach and I had the Stare-at-the-Therapist-Until-He-Impresses-Me approach. We were not a good team. We spent many sessions with only a greeting and farewell passed between us.

At some point, he made the bold move of asking me a question. He wanted to know how I felt about having this disease. I believe my answer was along the lines of “It’s fine”. He went on to praise me for how well I handled it (based on that answer) and told me I was a model patient. I thought he was a complete idiot but, at the time, I always accepted any compliments I could get. I stopped going to see him shortly after that session.

Experience 2:

I was in my early 20’s and getting ready to go off to an acting conservatory. My illness was progressing, I was worried about my mortality and, once again, I felt the need to process my feelings with someone outside my inner circle. My doctor recommended a therapist that specialized in treating people with illness. This thrilled me and I began to see her on a regular basis. At first I liked her. She made me cry about stuff which I took as a good sign. After seeing her for over a year, however, I started noticing that some of her advice was way off the mark. I became weary of what she told me and lost some trust in her perspective.

During one of our sessions I was talking about my life, I think I was crying again, and she began to interrupt me to tell me stories from her life. It was very jarring and I tried to see how they related. Simply put, they didn’t relate. She was a person who had suffered sexual abuse as a child and one day she decided she wanted me to know it. It was almost as if she had gotten sick of listening to me and decided she wanted me to listen to her for a change. I listened to her for the remainder of the hour and left feeling like I never had the right to complain about anything ever again. Clearly, my life hadn’t been as bad as hers. I felt very uncomfortable when I thought about going back again. I didn’t know how to handle it so I canceled my next appointment with a promise to reschedule. I never called her again.

Experience 3:

When I was diagnosed with Chronic Rejection after my first transplant I was confused, scared and devastated. I couldn’t believe I had been given this tremendous gift and the ride was over already. Perhaps more than any other time in my life, I needed to talk to someone.

A friend of a friend recommended me to Glen and I hoped he could help me work through some of my pain. Glen did much more than that. He became my rock, my teacher and my sanity. I have countless stories that I could tell about a time when Glen took me from a very dark place and helped me transform my perspective and my life. I couldn’t begin to describe how valuable he has been to me over the years. Because one story is no less valuable than the next, I will simply tell you the story of our first meeting that I still think about to this day.

It was difficult to even tell my story to this stranger without tears. I was going through so much and needed guidance so desperately. I told Glen of my fears and my fear of my fears. He listened and commented as I spoke. When I had come to a resting point, he pulled a book off of his shelf. I don’t remember what it was called but it was a paperback children’s book with an orange dragon on the cover. Glen presented the book to me as if I were in a group of kindergarten children and slowly read and turned the pages. At first this made me feel silly and uncomfortable but, like a kindergartener, I quickly became immersed in the book and forgot myself.

Glen told me the story of a young boy who found a little orange dragon and wanted to keep him as a pet. The little boy would show his pet to his Mom and she would respond with “There are no such thing as dragons”. For some reason, the dragon grew bigger and bigger. The boy showed the pet to his father and was again met with the response; “There are no such thing as dragons”. Still, the dragon grew bigger. One day the father came home from work to find that the house was bursting open as the dragon had grown so large that his head was poking through the roof and his limbs were hanging out of the windows. The father was very upset and asked the boy where this dragon came from. The boy told him that it had been in the house all along. The dragon then began to shrink and soon was, once again, the size of a small dog. As the dragon, the boy, the mother and the father cuddled on the sofa, the mother wondered why the dragon had gotten so large. The boy answered; “I don’t know. I suppose he just wanted to be acknowledged”.

I quickly found the value of this story as Glen and I began tackling my own dragons. I was astounded at how quickly they shrunk when I had the strength to look at them and truly acknowledge their existence. To this day, Glen and I face my dragons head on and, after the initial fear of their power, marvel at how quickly they become small.

I believe so strongly in the importance of Glen’s role in my life that I am unsure if I would still be here today without his guidance through the dragons of terminal illness and recovery.

The Verdict:

Finding a good therapist is not easy. Just because someone has a degree does not make them worthy of being a key player in the complexities of your life. Shop for the right one and don’t be afraid to move on if something doesn’t feel right. I wish you all the luck in finding the right professional to help you shrink your dragons, whatever they may be.

3 Year Lung Anniversary

It's a busy day at work so just one post today! I recently celebrated my 3 year lung anniversary (for this set, 7 years if you count both sets) and below is the letter I hope that my donor family has received. I wish them peace and healing and send them unspeakable gratitude.

Dearest Donor Family,

As March 28^th approaches, it is both a happy and sad day for me and my family. It is a happy day because it marks the anniversary of the day my life was saved. It is a sad day because it also marks the anniversary of the day you lost someone you love.

I wanted to write you this letter because I need you to know how much your gift means to me. The truth is, that is something I could never fully explain, even if I wrote 1,000 letters.

I have lived with illness from the time I was born. At 6 months of age, I was diagnosed with Cystic Fibrosis, a genetic illness that primarily affected my lungs.

After a sickly childhood, I began my acquaintance with in-patient hospital care at the age of 12. In spite of extensive ongoing treatments and procedures, (at home and in various hospitals), I graduated High School and began college. After three years, however, my health deteriorated to such a degree that I had to drop out. It was then that the doctors at UNC Memorial Hospital placed me on the list for a double lung transplant. Waiting a total of five long and difficult years, during which, my lung function dropped to 18% capacity, I received my first set of donor lungs in April of 2000. I celebrated my 27^th birthday a few months later.

The following year, I returned to school but shortly before finishing was diagnosed with Chronic Rejection. This was a devastating emotional and physical blow.

In 2004, I grew gravely ill, even more so than before my first transplant. My lung function was down to 10%of capacity and I was told I only had months to live. I was devastated that I was going to die so young (I was only 30) without meeting so many of my dreams and life goals.

Due to a series of wonderful and unusual events, I was able to have a rarely performed second lung transplant just in the nick of time. Amazingly, it has been more successful than the first!

It is not lost on me that I am extraordinarily lucky. My life has been spared twice by the compassion and generosity of two different families. There is not a day that passes that I take this gift for granted. In fact, it is this generosity that motivates me to strive to make a difference in the world. I feel I owe it to myself, my family, my donor’s family and my donors to make every moment count.

Today, I am happier and healthier than I ever thought possible. I am married to the man of my dreams. I have a passion for public speaking and writing and I am channeling those talks and writings around helping caregivers and patients with chronic or terminal illness. For the first time in my life I am able to live and work as a normal adult. I can breathe beautifully and am sure to run and play as often as possible. Every breathe I take is a breathe of gratitude. I am living a wonderful life.

I am carrying out all the dreams that I had for myself when I was so sick I could barely walk across the room. I do all of this in honor of your loved one, my donor.

I am so sorry for your loss. I know that nothing I can do can make up for that pain. I can only hope that you will feel that the lungs you donated are being used with love and respect and eternal gratitude.

Sincerely,

Tiffany

Pick a Pic, Please!

Which picture do you like better? The one on the left or this one? The third option is: no pic at all! Please vote in the comment section below! Thanks!!

Still Body, Forward Mind

When you become ill, the things that once made up your life begin to fall away. The exercise routines, the jobs, the hobbies…they all pay the price of the body’s inability to keep moving. Usually, this causes a crisis of self that I call “The Illness Identity Crisis”. “Who am I if I am not a doctor?” “a triathelete?” “A vibrant mother that is active in PTA?” Slowly all of the labels that we use to define ourselves have been stripped away and we are left with the core of our being. This is an opportunity to really get to know the untarnished truth of who we really are deep, deep down. Although I was initially terrified by my Illness Identity Crisis, I eventually was able to embrace what it had to offer and found the beauty of a still body and a forward mind.

Example 1:

I was dying again. I had chronic rejection, very little hope of another transplant and spent most of my time alone at home. Going out was a feat of massive proportions with the oxygen tanks, getting showered and dressed, getting to the car…it just didn’t seem worth it. Besides, where would I go?

The television became my greatest companion. I had a detailed program schedule that I would adhere to every day. As one might imagine, this routine became empty and lonely.

I decided it was time for a project to keep me busy. The challenge, of course, was finding something that I was physically able to do. I decided I would try my hand at painting despite a complete lack of artistic talent and training.

I started with a small canvas and a few paints. I found that with little physical effort I could sit and create something from nothing. I was hooked. My canvases got bigger and bigger and I looked forward to the times when I had the energy to paint. I felt alive when I was creating.

I was so infected with the joy of painting that I required it of my visitors as well. I bought many mini-canvases and asked all of my guests (people tend to visit you when you are dying) to paint something that made them happy. Most people complied and it was so much fun to see what each individual would come up with! Soon, my kitchen walls were covered with paintings from those I love. It was very special.

As I grew gravely ill, I was no longer able to paint for more than a few minutes. I was working on a massive canvas with small mosaic-like blue squares. When people noticed that I wasn’t going to finish, they took up where I left off. That painting is hanging above my couch now and is called “Group Effort”. It is by far my favorite painting of all time.

None of my art was very good but that wasn’t the point. With a failing body, I was able to find excitement and creativity within myself that I didn’t know was still there.

Example 2:

Purpose. Isn’t that what most of us are looking for? When I was waiting for my first transplant, the lack of purpose in my life was so profound I could barely stand it. I felt worthless without that all-important j.o.b., relationship or overall reason to get up in the morning. It didn’t matter to me that I was dying and waiting for a lung transplant. That didn’t take me off the mental hook and I felt like I needed to be doing something.

That is when I turned inwards. I didn’t have the physical strength to “work” in an outward way so I created a job for my inner self. I thought about myself and what I liked and didn’t like. I thought about what I would most like to improve upon. I decided I needed to learn how to be a more compassionate person. I called my job “Project Compassion” and dedicated myself to reading about, praying about and practicing compassion. Soon, my inner life began to open up in ways I never knew possible. I was connected to myself, a higher power and others in a way I hadn’t ever been before. It was truly a beautiful journey that I will carry with me always.

The Verdict:

When the body can not function at its optimal speed and ability it can be very frustrating or even depressing. It can be the beginning of a long journey to discovering who you are without all the worldly trappings. I hope that perhaps you will now see this time as an opportunity to discover places within yourself that few people have the time or inclination to explore. It won’t stop being hard, but it can be a time of great purpose and learning. Invite the Illness Identity Crisis and see all the riches it has to offer. This post applies to those with serious and chronic illness as well as those staying home for a week with the flu!

In Healthcare, Everyone Counts

When thinking about healthcare, most people usually think about doctors first and nurses second. While they are certainly the main players, that doesn’t mean that other people in the medical arena can’t make a major impact.

Example 1:

A good friend of mine woke up in the middle of the night to find herself paralyzed on the left side of her body. She somehow pulled herself over to the phone and called someone to come get her and take her to the hospital.

She was admitted, of course, and began her long journey back to health with test after test. As it turns out, she had a form of a stroke called Vasculitis. She was terrified.

I spent the night in the chair next to her as much as I could. One morning, only a few days since she had fallen so ill, a young nursing assistant came in to give her a sponge bath. My friend, weak and scared was made to feel even more vulnerable by the stripping down of her clothes. As the woman washed her they began to talk. My friend told her what had happened and how scared she was. The woman began to ask her about Jesus and I didn’t think much of it as my friend is a devout Christian. Soon the conversation slid into why this had happened to her and the nursing assistant offered her opinion that it was due to her sinning nature. She surmised that if my friend had not been such a sinner this would not have happened.

As a little back story on my friend, she was very kind and very innocent. She had never been married, never been intimate and loved to teach children. Also, as I mentioned, she was a devout Christian.

To my surprise my friend did not defend herself. Naked and shivering, she began to cry and accepted the theory presented by the nursing assistant. I became enraged and told the woman to leave immediately. In my friend’s state it took me hours to help her see that the words spoken were cruel and untrue. After that day, I was never sure that my friend completely believed that this wasn’t caused by her sinning.

Just a nursing assistant? Yes, with a dangerous tongue and too much access to patients.

I am proud to say I got her fired.

Example 2:

After my first transplant I was in ICU for a week. I was intibated and on lots of pain medications. Every morning I would be woken up by the cleaning lady asking me if I was ok? I was baffled! Why did this woman keep waking me from my peaceful sleep?

One morning I was dreaming that I was cleaning out my closet (riveting, I know). I woke up slowly and saw that I had my arms out-stretched and was acting out the dream with my hands. It dawned on me then that this must be why the cleaning lady would wake me up! My morphine dreams were so real I would act them out and it would look like I was in distress.

I wish I could tell that woman how much I appreciate her concern. It is so nice to know that some people just care about patients, no matter what the job description.

The Verdict:

In healthcare, never underestimate the power of one person’s role. Never fail to report a callous care-giver or employee because chances are it is not an isolated incident. Always thank people for their compassion as it is a beautiful gift.

The All-Important Written Word

Short Story: Communication between patients and doctors is not always perfect. Likewise, communication between medical professionals is not always perfect (or even close).

There is hope and it comes in the form of the written word.

Experience 1:

Because of new research linking chronic rejection and acid reflux, I elected to do a stomach surgery that would prevent acid from getting in my esophagus. That surgery is called a Nissen Fundoplication and I also had a Pyloroplasty with it to aid in my stomach motility. That’s a lot of surgery on one stomach! Thank God my surgeon had been around the block a few times and understood the power of notes.

When a person has a Nissen, it usually prevents them from being able to vomit ever again. Nausea is a common problem for me, especially when pain meds are involved.

I don’t really understand why this is, but it is my experience that nausea is often taken very lightly by doctors and nurses. I tell them I am nauseous and they respond with an “Oh, that’s too bad”. Meanwhile, there are many drugs that can be used to treat nausea.

I suppose my surgeon had found that same thing to be true because he printed out a big note and posted it above my bed that read; “Treat Nausea Aggressively”. Guess what? Those people caring for me responded to that note as if God himself were speaking to them. I still had a lot of problems with anesthesia related nausea but I shudder to think how bad it could have been if he hadn’t taken the time to make that note. Thanks, Dr. F!

Experience 2:

For those needing inpatient care sleep is a rarity. Between the night nurses hollering to each other down the hall at 3am, the 24-hour-a-day blood draws and the revolving door of random visitors (professional and non-professional) finding time for rest isn’t easy.

That’s where the note comes in. Posting a note on the door stating that you are sleeping and to not disturb until a set time worked wonders for me. There’s just something about signs that people really respect and will adhere to the message.

Experience 3:

A chart is something that accompanies you wherever you go in the hospital or doctor’s office. A chart is also something that is written in but rarely ever read.

For those of us that hate to repeat ourselves, writing notes is a great alternative to saying the same information to every new face that walks in the room. Things like your medication regimen, questions you have and your list of symptoms are great to have written down, both as an inpatient and an outpatient.

The Verdict:

Mistakes can happen. Writing notes is one major step in helping to promote good communication for your team. It’s not rude or arrogant; it’s good common sense. Having a written note means you can relax more and feel like you don’t need to defend yourself even in your sleep. It can also prevent frustration for the patient as repeating yourself can be annoying.

The Pain of Positive Thinking

At some point in a person’s life, they usually stumble upon the allure of The Power of Positive Thinking. While this concept is certainly valuable and useful, taken to extremes it can also be destructive.

Example 1:

When I was in my mid-twenties I moved to California and became deeply immersed in my spirituality. Part of that included a mentorship with a well-known female guru I will call Tisha. She had a good size following and I was always honored when I was able to get face time with her alone. I respected her tremendously and was an eager student.

I was being trained that nothing in this world is a coincidence and that we have control of our own lives. I learned how to pray for things and they would happen. I learned to value myself as an important child of God. I worked hard to believe in myself and in my future.

The one thing that I wasn’t able to “transform” was my health. I would still get sick and continued coming and going from inpatient hospital care.

Tisha told me that I could be well if only I wanted it enough and believed that it could happen. At first this was an inspiring concept and one that I embraced fully. I visualized my healing and trusted that God would provide me with a way out of my physical ailments. Time passed and my health continued to deteriorate despite my prayers and affirmations. Tisha’s words rang in my ears: “You can be well if you only want it enough and believe it can be so”. I thought I wanted it. I thought I believed it could be so. I assumed I merely had not dug deep enough and had hidden resistance to health in my unconscious self.

My failure to heal slowly led to a failure to believe in my own spiritual depth. I told myself that if I only prayed harder, loved God more or believed more strongly, then I would be free of this disease. I began to feel bad about myself and my connection to God. I beat myself up for my perceived spiritual inadequacies. Eventually, I became depressed. All the while, my disease kept on progressing without a hint of it recognizing my spiritual journey.

Example 2:

Before my first transplant, I had a great teacher in acting school. He was from Russia and taught an exciting movement class. He taught us a movement ritual that he called “Form” every day. When he would hear me coughing he would assure me that if I just did Form enough, I would be cured. I thought he was out of his mind but secretly tried it anyway. He was wrong.

Verdict:

So many people have the magic bullet; that thing they know about that will fix any problem. From self-help gurus to alternative treatments to spiritual teachers, they have the right recommendations and advice. There is nothing wrong with embracing these ideas. When it becomes a problem is when you do not allow the possibility for them not to solve everything.

What I have come to realize is that we are all made of matter and are earthbound creatures. Because of this, we must abide by the rules of earth. Sometimes miracles happen. Often, they don’t. Why isn’t it ever considered God’s will for a person to be sick? Are we so narrow in thought that we think we should all be taught lessons the happy way? My disease, no my diseases, have been hard but I wouldn’t trade them for the world. They are my ticket to learning what I am here to know.

Please don’t ever tell me someone “lost their battle” to a disease. This is not a war and there is no one to blame. I have friends that I have lost and some I never got to meet. I would never tell them that they died because they didn’t think more positively. Feed your spirit with love and compassion but beware of the Pain of Positive Thinking.

A Letter to Dying

Dear Death,

I think I was born being uncomfortable with you. Growing up, the thought of a loved one dying filled me with cold panic and I was unable to allow those thoughts for any length of time.

When I got to be around 10, I started to understand the severity of my disease. As a ploy for attention, I would proudly announce to my classmates that I would not live into my 20’s.There was a part of me that enjoyed seeing them squirm with discomfort, it was a confirmation that nobody I knew was comfortable with this topic. My proclamations were light years from my heart as I was so disconnected from the emotional truth that I shut down until high school.

I grew sicker as I grew into my teens and spent my first weeks in a hospital around the age of 12. There was a boy down the hall who was 11 and he also had CF. I knew that he was sicker than me because they moved him into my room to be closer to the nurses’ station and kicked me to the end of the hall. One night, I saw his parents leaving and crying. That familiar cold chill went through me and I assumed that you had taken him. Unfortunately, I was right.

This was a boy I had never known but he was one year younger than me and he was dead. I cried for him and cried even more for me. We had the same disease, he was one year younger than me and he was dead. You didn’t make sense.

My uncle died not long after this event and I remember the feeling of complete terror and helplessness as we greeted my grieving aunt and cousins. I wanted to smile and pretend that we were having a pleasant family reunion but their tears foiled those plans. I wanted to avoid the topic of my uncle entirely. I wanted to hide until the sadness around me was over. Instead, all I could do was sit in a room of grieving loved ones, half in shock and half sick to my stomach.

At 13, my fear of my own death was abstract, but palpable. I began to act out in dark teenager kinds of ways. I dressed in black and wrote somber poetry about the meaninglessness of life. I drank and smoked with my friends. The smoking especially felt like a true empowerment and a “screw you” to this disease and to you. I always have seen the disease as separate from myself and, in this case, that proved to be a great disservice to my own health.

It would be many, many years later that I would find myself face to face with you as an adult. I had to take two passes at the dying thing before I could move aside my fear and denial long enough to embrace what was happening. With time and a weakened body, I grew unafraid of your truth and welcoming of your gifts.

I could write pages about the freedom that comes from accepting you as a part of life. I could write books about the beauty of dying and how it can transform your entire foundation. (At least I’d like to think that I could.) But the feelings of peace that I have experienced are memories now. I can only explain what I remember. I can only tell you that what should have been “the worst part of my life” is that part that I look back on most fondly. I can see the bitter-beauty and complexity within my experiences and tales of those around me. I can only wish that telling my story will help others understand why a big piece of me looks forward to the dying I have to do in my future.

Thank you for everything,

Tiffany

Patterns of Illness

I have found that the patterns of illness are hard to break. Although I am mostly healthy now, I still react to my environment with many of the same thought patterns and emotional patterns of when I was very sick. When I see a flight of stairs, I still react with dread, despite the fact that they no longer pose as an obstacle to me. When I see a full schedule on my calendar, I react with fear and panic, convinced I will not have the strength and energy to get through the day. This is simply not true.

There are certainly patterns that have diminished over time. I no longer fear household chores like laundry. Somewhere along the way, my body and mind have recognized that this no longer poses a threat to my well-being. That is why it is still surprising for me when I have a strong reaction to things like stairs and my schedule.

I try and talk to myself in a reassuring tone that there is nothing to worry about anymore. That helps for a moment, but the emotions are so deep they resurface at the next turn.

It makes me sad that my body and mind have been through so much difficulty that I react to the world in such a fearful way. I pray that as the years pass with good health still in tact (God willing) that these patterns will continue to dissipate and I will find a deeper healing to the wounds that have caused such emotion.

If You Go...They Will Treat You

Have you ever been to a mechanic, told them your engine was making a knocking noise and had them send you home? Of course not. That’s not what mechanics do when you tell them your engine isn’t working right. They take it for the day, or two, test it and try to fix it. Sometimes they will do lots of tests, tighten bolts, change belts and there will still be a knocking noise. Sometimes, they will discover there was a loose marble in your trunk making all that noise. Sometimes, they will discover that your engine would have fallen out on the highway had you driven one more mile.

Doctors are the mechanics of the body. If you go to them with a symptom or two, they will treat you the way and to the degree they see fit. I may think I have only a cold worthy of some sympathy and an acknowledgement but they see a potential lung infection on the horizon and prescribe IV antibiotics through a PIC line! Ouch! I could argue and bargain (‘if I get worse I’ll do IV’s’ etc.) but that is usually futile. If I go to the doctor for my cold, I can expect for them to treat me and HOW they treat me is not in my hands. I can’t get upset with their solution when I’m the one that asked for them to check the engine!

Because of this, I am cautious to have clear, responsible definitions for myself of when I am in trouble (i.e. "I will go to the doctor if I get a fever with this runny nose) and only reach out at those times. Otherwise, I keep my cold to myself.

Like Most Girls: A Love Story

Like most young girls, I spent hours dreaming of the day I would meet a man and fall in love. Romantic dates, wedding dresses, and images of happily ever after danced through my head. All the while, the nagging question underneath; “But can a girl with who is so sick have all those things?”

Dating isn’t easy for anyone. Proof of that can be found simply by visiting the “self-help” section of any bookstore! Whether we are trying to figure out the “rules” of dating or understand the differences between “Mars” and “Venus”, there clearly are a lot of people in need of guidance on the topic. Most of us reach a point in our lives when we deeply desire a partner and rarely have a smooth journey in finding, or for that matter, keeping one.

Acknowledging the already challenging nature of love relationships, it is no wonder that adding the difficulties of illness into the equation can create another level of complexity. As a young girl seeking love, I made many mistakes. As a young CF girl seeking love, I made many excuses. Using trial and error as my guide, I continued to make mistakes and excuses well into adulthood. There aren’t many role models out there for such a situation and I fumbled desperately in the dark.

A confident person in most of life’s arenas, my “relationship self” never seemed to match with the rest of me. When talking to boys, my focus was on saying what I thought he wanted to hear. All I cared about was getting him to that like me and become my boyfriend. It never occurred to me to question whether or not I liked him! In relationships, I was submissive and often was talked down to and told what to do. Inside, I knew that wasn’t right but I couldn’t bring myself to “rock the boat”. Deep down, somewhere along the way, I developed an unconscious belief that I had to trade his bad behavior for him having to “put up” with my illness. I was often in a state of vulnerability and weakness. That state of mind led me to do things I wouldn’t have done had I been true to myself. It allowed me to be in verbally abusive, long-term relationships and to hang on to those relationships out of fear of never finding better. Many women have walked a similar path that I am describing, but Cystic Fibrosis was a large driving force behind why it was so difficult to change these detrimental patterns. There was unaddressed anger and sadness there and I often looked to men to make me feel alright about my disease. That never worked! With some counseling and a determination to be loved the right way, I eventually found my way out of that confusing maze.

Now, after consciously working to change my patterns, I have found what I always hoped, but never truly believed, was possible. I have the happiest and healthiest relationship that any human being could hope for, with or without CF. I also have the battle scars from years and years of bad choices and faulty perspectives. All I can do now is talk honestly about all the things I wish someone had told me when I was searching for answers to the tough questions. I hope that some of my big mistakes will serve as a warning to others as well as an inspiration to require more from themselves and those they choose as partners.

Below I have jotted down a few things I Wish I Knew A Long Time Ago. They seem simple, but they really are key.

Pre-Dating “Homework”: It is essential before you begin dating that you clearly establish a strong foundation of self-love and appreciation. Sadly, it is easy for some girls (and boys) to see themselves as “damaged goods” and therefore be willing to do things in relationships or overlook major character flaws that they wouldn’t if they didn’t have an illness. The first step in doing this is to uncover the difference between your mind, your body and your soul. We so often find our self-esteem in the clothes we wear or how pretty we feel, but it’s important to go deeper to discover what is valuable about you beyond the physical. Once you are able to make that differentiation, you can then explore who you are and what you believe about life on a much greater level. When you can truly see yourself as the amazing person you are, you will then be able to begin the search for a healthy relationship.

Dating: There are so many questions that come up when you first start dating a new person. Things like, “When should I tell him about my illness?” and “What kind of reaction will he have?” can distract you from getting to know someone. The answers to these questions need to be explored in your “homework” so you can enter into dating with a plan. You have to figure out where you stand on these important issues before you go on the date. Trying to sort out when you should tell someone about your physical problems in the back of your mind won’t work; you won’t be engaged in the moment and will miss getting to know the person in front of you. If you think of these things ahead of time, you will have a game plan and can feel more confident.

In general, when you are on a date, it is essential that you find techniques that help you maintain your level head and not get caught up in the “need to impress”. Pretend like it’s a job interview and you are the employer! There’s only one position available as your partner, so be discriminating and choose wisely!

Getting Serious: When you have an illness, falling in love can feel bitter sweet. Amidst the excitement and joy come the questions: “How will we handle it when I get sick?”, “Will he stay with me when I am in need?” and “Can I or should I have children?”. Facing the sad parts of your reality head on is key to having a strong relationship. If you can’t talk about the hard things, there will be trouble down the road. As the person with the illness, it is your responsibility to educate and initiate dialogue about your disease process. It is your partner’s responsibility to take it seriously and look within themselves to see if they are up for the challenges ahead. If your relationship is going to work, you will both need to feel safe and comfortable in talking about your true feelings at every turn. While facing illness is difficult, it can enhance a relationship with the right partner because you both will be keenly aware of how precious your time together is.

The burning question for many people is; “Can I have the relationship of my dreams despite my illness?” and my answer is “yes”. There is someone out there who will love you enough that a short time together is better than no time at all. Is your life more complicated because of your illness? Yes, but you have the opportunity to embrace your challenges and enrich your life and your love.