Rare yet all the same

Eleven years ago, I was thrust into the world of medicine as a patient in dire need of finding a diagnosis. My body was failing. No one knew what was wrong with me. I felt as though I was a social outcast. Unable to do more than lift my head off the pillow, no one seemed to understand my daily life.

As the internet began to evolve with message boards and Yahoo groups, I suddenly found myself surrounded by dozens and dozens of folks going through the same medical, physical and emotional challenges. Although our diagnoses were often not the same, our stories were. We were all chronically sick. We were all desperately seeking answers to our myriad of symptoms. We all just wanted to get back to our regularly scheduled lives.

As time progressed, we shared our stories of frustration when medical professionals did not take us seriously. We expressed our sorrows when medical procedures went poorly, or one of our beloved passed away. We inspired each other when loneliness and isolation often threatened to overwhelm us. We celebrated birthdays and milestones which were often forgotten by our own families.

Yes, it is through rare conditions we learned to grow. We learned to deal with our inability to function normally in society. We developed relationships with people we never met. Our hearts grew to comfort and console our virtue family.

As February 29--rare disease day--comes to pass, may we all take a moment to reflect on how far we have come. With each day, medical research continues to advance. New procedures and devices make it possible for us to live in the comforts of our own homes. May we rejoice in online communities which allows us to share our stories and knowledge. Although none of our paths are exactly the same, may we raise each other up to continue the fight.

To all my friends with rare medical conditions, keep on keeping on. This life may not be easy, but it is a blessing to have each one of you in my life. Praying one day there is a cure to all our ailments.

Standing on the shore, searching for the star

The hardest thing to overcome when chronically ill is accepting your “new” life. It is very difficult after one has lead a relatively normal life to be thrown into a world which revolves around doctor’s appointments, hospitalizations, procedures, tests, medical equipment, etc. Your life turns from one of helping others into needing constant assistance yourself. Your life changes from one of being a hero into one of being a damsel in distress. Everything which you once knew is turned upside down and flipped inside out.

As the years have passed, I find myself yearning for accolades and achievement certificates. I know these are just earthly awards, but I crave accomplishment. My heart breaks when someone asks me about my life, and all I can say is, “I read the Bible, write Bible studies and attend a weekly Bible study.” My life is void of any great feats or wonderful charity. My daily list of accomplishments often includes brushing my hair, changing my clothes and filling up my ventilator water chamber with water. (These are hardly tasks which will earn anyone a gold medal.)

My life once used to be cluttered with ribbons, medals, trophies, certificates, letters of congratulations, etc. Every day was a day to strive for perfection and change the world. I flip through old photographs and find it unimaginable that I once accomplished so much. There is always a young girl with a bright smile cheerfully enjoying the limitless possibilities which lie before her. Nothing seems impossible. I thumb through a box which contain small remnants of my old life. My heart breaks when I am reminded of things I worked so hard to achieve. The accolade came and went. At the time, I thought little of the accomplishment because I was going to achieve bigger and better things.

Now, I look through my recent life—endless photos of me being in the hospital. Every image there is a girl smiling, but despite her best efforts, exhaustion and fatigue are rampant across her face. There are no ribbons, just a port in my chest. There are no medals, just a tracheostomy tube around my neck. There are no trophies, just a ventilator next to my bed. There are no achievement certificates, just a stack of medical records on a table.

In this new life with chronic illness, my greatest acoomplishments go unnoticed by the world. But I wait, for that glorious day when perhaps the LORD will say to me, “Well done good and faithful servant. You have been faithful with a few things; I will put you in charge of many things. Enter into the joy of your Master.” (Matthew 25:21)

Perspective: Today just isn't your day

Today, I had a doctor's appointment. I left the house in a hurry and forgot to take some food along to eat after my appointment. I am rejoicing when I arrive at my appointment five minutes early. I am thankful I am able to see the doctor within an hour of my scheduled appointment. (This is a huge praise as he sometimes runs very, very late.)

When I leave the doctor's office, I am in severe pain. I need pain medicine, but I also have to go to the bathroom. I decide to forgo the bathroom as I need to stop at the store to buy something to eat for the car ride home.

I arrive at the store. I praise God there is a close parking spot and an electric scooter right next to the spot. I enter the store and proceed to the pharmacy. I search and search for acetaminophen, but I cannot find any. There is naproxen, aspirin, ibuprofen and combination medicine. But plain acetaminophen does not seem to be anywhere in sight. I finally give up and turn my scooter around in the aisle. To my delight, across the aisle is a massive display of acetaminophen in all sorts of strengths and quantities. I quickly find the type I take and throw it into my basket. I next proceed to the dairy section.

As I scan the dairy area, I cannot find organic yogurt. I look high and look, but I cannot find it. When I give up and venture toward the front of the store, behold, I find one brand of organic yogurt. I gleefully place the yogurt into my cart. I zoom away to the front of the store.

Since I am extremely tired and in a lot of pain, I decide to treat myself to kombucha. This is a favorite of mine, but I try to limit my intake as it is quite pricey. When I arrive in the refrigerated beverages area, I search and search for my favorite flavors. (I have had bad experiences in the past with kombucha. I stick with only two flavors to ensure I do not have to gulp down really disgusting tasting tea.) Although the labels on the shelf state they have my favorite flavor, there is none in sight. There are only four kinds. I contemplate it I should buy any. I finally decide to buy one which is guava flavored. (I have no idea if I like guava. But, I am really thirsty. If it is really bad, I can always place the kombucha in the blender with some fruit and ice to make it into a smoothie.)

At checkout, only self-service registers seem to be open. There is a line. Thankfully, it moves quickly. My dad helps me as I check out. In no time, we are finished and on our way. I see at the front of the store, my bank has a small store front and ATM. I rejoice. I need to take money out of my account. I keep forgetting to give my debit card to my money so she can retrieve money from the ATM when she goes gallivanting around town. But, like an answer to a silent prayer, here is an ATM right in front of me. I attempt to use the machine, but there is a message on the computer screen stating it is out of order. I sigh and decide I might be able to get money by going to a teller. My dad stands in line.

The bank line does not move. There is only one teller. There seems to be an issue with the customers at the window. I know it is going to be a while. I am in a lot of pain, and my tummy is hungry. I tell my dad I am leaving. As I wheel passed the ATM, now the machine is working. I insert my card. I enter my pin number, and soon I have money in my hand.

As I am leaving the store, I am going to use the restroom. My bladder is quite full. As I approach the restroom, I see it is closed. My dad says to me, "Today just isn't your day." I am startled by this observation. So far, everything has worked out extremely well. I ponder my dad's comments as I head for the parking lot.

Once in the car, I realize I do not have a spoon for my yogurt. My parents search the car, but they cannot find any plastic spoons. I think long and hard about how I am going to eat my yogurt. I see the yogurt has a plastic top. I decide to bend the plastic top into a U-shape and use it to scoop out my yogurt. It is not the most glamorous way to eat yogurt, but, nonetheless, it worked! I also decide to open my kombucha. I pray the drink tastes good. After one gulp, I rejoice. Oh, the tea is so good! Hallelujah!

The traffic home is rather light. When the car pulls into the garage, I spring out of the vehicle. I flee into the house. I rejoice when I am able to empty my bladder. Oh how good it is to have a functioning bathroom with running water, a toilet, toilet paper and a toilet seat. I chuckle again when I think about my dad's comment earlier in the day. Maybe in his eyes my day was less than ideal. But, according to my perspective, the day was a smashing success. Thanks be to God!

Pain: The unwelcomed guest

Recently, I have been in tremendous pain. I try to push through without using pain medicine. I generally know my pain level and can discern what drugs will help. Since I have a very limited supply of prescription pain medicine, I try to avoid it at all costs. I often do not take over-the-counter medicines either, as most of the time if I have that little bit of pain, I can fight through it. However, if the pain lasts for hours on end, I will break down and take an over-the-counter drug.

Despite the pain, I attempt to live my life as normally as possible. I push through to maintain my normal routine. I fight the tears, screams of pain and relentless tremors which often threaten to break out into the open.

This last weekend, my head, neck and shoulder were exploding in pain. I kept telling myself it was my imagination. I am not in that much pain. I ride in the car to church. I take some acetaminophen. By the time I make it inside church, I want to cry. "Oh, the pain!" I wait two hours for the over-the-counter medicine to work. Nothing happens. I then break open the prescription medicines--acetaminophen with codeine. The pain intensifies. Tears are welling up in my eyes. My body is shaking uncontrollably, and I feel as though I am going to throw up. I am trying, trying so hard to remain still as I sit through Sunday School. I attempt to remain composed as I say good-bye to my friends. Despite my best efforts, my one dear friend notices I am not feeling well. I flee to the exit and try to rest in the car.

When another hour passes, I take my last resort pain medicine: hydrocodone with acetaminophen. This is it. If the pain does not ease, I have nothing else to take. I wait and wait. An hour after taking the medicine, the pain decreases to about an eight out of ten. I stop shaking. For an hour, the medicine helps. Then, like clockwork, the pain comes roaring back. There is nothing else I can do. I lie in bed, shaking uncontrollably and fight the urge to vomit. I cover my eyes and wish for the pain to break. Finally, nine hours after it started, the pain lessens. Hallelujah! I can now uncover my eyes. Very slowly, my body starts functioning again. The pain drops to about a six out of ten and stays there for the rest of the day. I move gingerly, knowing any sudden move can cause the pain to come roaring back.

"Turn to me and be gracious to me,
For I am lonely and afflicted.
The troubles of my heart are enlarged;
Bring me out of my distresses.
Look upon my affliction and my trouble,
And forgive all my sins." (Psalm 25:16-18)

KY—Where is that located?

When I first received my tracheotomy, I was introduced to a whole new world of medical supplies. When a new tracheotomy tube, which needs to be replaced every three months, was delivered by my durable medical equipment (DME) company, I felt confident I could do the simple procedure. First, you need to deflate the cuff on the tracheotomy tube located in my trachea. Next, you have to undo the Velcro which secures the tracheotomy tube around my neck. Then, you gently pull out the tracheotomy tube.

I was good with all of this. However, to insert a new tracheotomy tube, you need some sort of lubricant to allow the tracheotomy tube to slide down into place. Without using any lubricant, the tube tends to get stuck and will cause trauma to the tracheotomy site.

As I looked through the supplies I was given by my DME company, I did not have any sort of lubricant. I thought long and hard what I could use. I searched online and found out you could use KY Jelly. I though to myself, “Oh wonderful! I can pick that up at Walmart!” And off on my adventure I went.

When I arrived at Walmart, I thought the KY Jelly would be located in the feminine hygiene area. I searched and searched, but I could not find it. Furthermore, I was not exactly sure what the product would look like. Does it come in a small tube, a box or some other packaging? Aisle after aisle I looked, but I was unsuccessful. Then, like an answer to my prayer, there was an employee in one of the aisles. I approached the male associate and asked, “I am looking for KY Jelly. Where would that be located?”

The man’s face blanched and then embarrassment overcame the gentleman. He would not look at me, but he proceeded to the pharmacy area. There, next to the condoms, was the KY Jelly. The man pointed to the product and then quickly scampered off; his face was bright red. I yelled out to the fleeing employee, “Thank you so much sir for your kindness!”  I also told myself, “Ah, yes. This would be a logical place for KY Jelly. I am glad the Walmart employee knew where this was. I would have never found it by myself.”

I next proceeded to the checkout area. A woman scanned my one item. I informed her I did not need a bag. Everyone in the checkout area was looking at me. I told the cashier, “I am so glad y’all have KY Jelly. What a lifesaver. I don’t know what I would have done if y’all didn’t have this product. I can’t wait to get home and use it!” There was stunned silence in the checkout. I exited the store.

Upon reaching home, I set up everything to do a tracheotomy tube exchange. I open the box with the KY Jelly. To my delight it is an easy to squeeze container. I carefully put the lubricant on the end of my new tracheotomy tube. I quickly pop out my old tracheotomy tube from my trachea. And with little effort, the KY Jelly allows the new tracheotomy tube to slide into place. I smile and then start laughing as I think about everyone I saw at Walmart. They probably had no idea KY Jelly was a multipurpose item.

Perception: The Pain Scale

I lie in my hospital bed, shaking and screaming in pain! Alarms are blaring. My heart rate is in the 160's, my blood pressure is 200/120 and my breathing is too ragged for the vital's monitor to record. My pancreas is erupting in pain. I think I may just die. I can feel the digestive enzymes eating away at my pancreas. I have pressed my call light button. I pray, "Please God, send someone quickly!!!"

Ten, twenty, thirty minutes pass. Finally my nurse enters my room. I have my knees to my chest; tears streak my face. I struggle to speak from the intense pain overwhelming my senses. I choke out the words, "PLEASE...I'M...IN...PAIN! PANCREATITIS...ATTACK! WORST...PAIN...OF...MY...LIFE!" My nurse seems unconcerned. She asks, "On a scale of 0 to 10, zero being no pain and 10 being the worst pain of your life, how would you rate your pain?"

And let's stop the story right there. The above encounter has happened numerous times when I have been in excruciating pain--bowel obstructions, pancreatitis attacks, sepsis, etc. I try not to get aggravated by the pain scale question, but somehow being asked, when I am clearly in severe distress, what my pain level is on a pain scale really annoys me. I know, I know the pain scale is used to gauge a person's pain. But really, when you get to around an eight, nine or ten, pain will start to manifest itself in tears, screams, shortness of breath, an inability to speak without screaming or gasping for breath, etc. Additionally, one's vital signs will begin to signal the patient is in distress.

I can see the benefit of the pain scale when a person's pain is a one through seven. The pain may be annoying or very troublesome, but it is not exhibiting itself in obvious outward signs. A person with a frown on his face may be in pain or may be in a bad mood from a night of little sleep in the hospital. Until pain can be recorded as a vital sign, the pain scale is often helpful in these situations.

Moreover, the pain scale is mostly one of perception. The number ten on the pain scale is supposed to be "the worst pain of your life". I have issues with this terminology. I have been in many situations of EXTREME pain which I rated as ten. Now, were the pain events actually "the worst pain of my life"? The answer is no. Were the events such traumatic experiences in which you would give up all your possessions at that moment for pain relief? The answer is yes. Does it really matter if the pain you are experiencing is actually the worst pain of your life? The answer is no. You are in debilitating pain and are in desperate need of urgent pain management.

Also, there are some folks who have never had bad accidents, infections or injuries. A person may be in the worst pain of his life, and rate his pain as a ten. However, he is calmly watching television and visiting with family. Next door to this patient is a person with numerous fractured bones who also rates his pain as a ten. He is screaming in pain and has vitals which signal he is in severe distress. An important lesson to note, the pain scale is just a guide. The medical professional reviewing the information must use common sense if the pain number given corresponds with signs and symptoms.

And this is where I will leave this post: if you are a medical professional, and see a patient writhing in pain, in clear distress, screaming, crying and vital's monitors blaring, don't ask what number they are on the pain scale. Simply say, "It looks like you are in a great deal of pain. Do you think this might be a ten on the pain scale?" The patient can nod his head if the answer is yes. If the answer is no, he can correct you. Either way, you will give tremendous comfort to the patient with these kind words which exhibit your understanding the patient is in significant pain.

A day of delays

It is here! It is the day I been waiting for. It is time to get my port. I wake up at 5:30 a.m. I need to be at the hospital at 7 a.m. to begin the check-in process for the procedure. My mom and I leave for the hospital at 6:43 a.m. A short distance from our hotel, a traffic light is not working. Long lines of cars are back up in all directions as each car must stop at the blinking red light at the intersection. Minute after minute passes. We slowly make our way to the intersection. When we finally clear the traffic mess, we again hit more congestion on the city streets.

At 7:15 a.m., I arrive at the admissions desk. I tell the woman my name and am told to wait. There are several other people in the lobby waiting to be checked it. It appears as though only one employee is working on a computer, going through all the registration forms with patients. Time ticks by. Finally, another worker arrives and calls my name. When the registration forms are complete, I am wheeled back to the lobby and have to wait for transport to take me to day surgery. A short while later, a pleasant young woman arrives to take me upstairs.

When I arrive at the day surgery check-in, I hand in my paperwork from registration. I am told to wait in another waiting room. About five minutes pass. Then, a nurse appears and wheels me back to the interventional radiology holding area. I am placed in cubicle eight. It is 8:15. My procedure is slated for 9 a.m. I reassure myself, there is plenty of time. Respiratory meets me in my cubicle and asks me a number of questions regarding my trach and ventilator. I slip into a hospital gown. I am hooked up to monitors which record my vital signs. I wait for the nurse. At 8:40, my nurse starts an IV and collects blood for some tests. I panic a little. I know it takes about an hour for the lab to result the blood work. I wonder how the results will be known since my procedure is set to begin in less than 20 minutes.

My mom, after she went back to the hotel to drop off the car to avoid paying for parking at the hospital, takes the hotel shuttle to the hospital and meets me in my cubicle. She watches videos while I read my Bible. Time ticks by. At 9:30 a.m., the physician's assistance explains the procedure and has me sign consent forms. A little while later, I overhear the procedures to be performed on patients in cubicle seven and nine. No one seems to be moving in or out of the holding area. Time continues to march on.

At 10:40, I am notified there has been a trauma case which has been occupying the interventional radiology department. A nurse is setting up an alternative room. They hope in an hour they will have everything ready to go for my procedure.

At 11:30, a nurse from interventional radiology comes to take me to a make-shift room. The room, which is called a "multi-purpose room" on the hallway wall, is a tiny room crammed with too many people, tables and equipment. Everything seems to be chaotic. I am prepped for the procedure. My chest is cleaned and draped with sterile clothes. A sterile field is set-up. When the doctor enters the room, I ask her questions about the procedure. There seems to have been a miscommunication. The doctor does not have orders to place a port. She is slated to perform a different procedure. I ask for the surgery to be cancelled and for everything to be clarified with my infectious disease doctor who ordered the port.

The sterile field is destroyed, and I am wheeled back into the holding area at 12:30 p.m. My infectious disease doctor's contact information is looked up. I patiently wait in my cubicle, reading the Bible and catching up on some online Bible study videos. My nurse and respiratory therapist tell me how calm I am and are shocked I am not yelling at them. I am confused. I think to myself, "You are not the ones causing me any harm. Everything is from God. I have no one to be mad at but God...and I am not mad at Him because I know He is directing my path." I thank the two women for their kind words and go back to my studies.

A little after 2 p.m., I am told my infectious disease doctor contacted interventional radiology and pleaded my case for getting a port placed. He then had his office submit new orders for the procedure. The woman next to me has just been wheeled back to have her procedure done. (She has also been waiting all day for her procedure.) When the woman is done, the room will be reset, and I will be next.

At 3:15 p.m., I am wheeled back. This time, I am taken to the regular interventional radiology room, which is HUGE compared to the multipurpose room this morning. I am again prepped for the procedure. The doctor does the surgery, taking her time and giving a very detailed explanation about everything she is doing to a medical student who is watching the procedure. The procedure, which normally takes about 20 minutes, finally ends. At 5:15 p.m., I am rolled back to the holding area. At 6:48 p.m. I am released. I then am escorted downstairs to my mom, who is waiting for me in the car.

As I climb into the car, the respiratory therapist tells me how wonderful of a patient I was. My nurse gives me a hug and tells me she will be praying for me tonight. A few minutes before 7 p.m., my mom and I leave the hospital and head for the hotel.

As we pass through the crowded streets, I am happy about the day's events. Despite the endless delays, I did not allow negative emotions to rule my day. I just passed from roadblock to roadblock with an assurance God was in charge. I thank God for His guidance and for all the speed bumps. I praise God I now have a port. Perhaps soon I will have IV antibiotics and will shortly be on the path to better health.

Being comfortable at home, is that a bad thing?

I recently had a doctor's appointment, a doctor's appointment I have waited a very long time for. I was having a bad health day due to severe breathing issues during the night. I do not want to cancel. I know many clinics have strict cancellation policies in which if you cancel, you are changed an out of pocket cost as high as $100. Moreover, I do not want to wait several more months for another appointment. I decide to bear down and make the trip to my the doctor's office.

I am told to arrive 30 minutes early for the appointment to fill out paperwork. I do so and fill out the basic demographic information and sign a few places on a form. I complete the paperwork in about 2 minutes. I wait for my appointment. I am so tired. My body is shaking from severe fatigue. I wait and wait. Almost an hour after my scheduled appointment time, I get called back to a room. A medical assistant asks me some health questions. Nearly two hours after arriving at the clinic, I see the doctor.

The appointment is unproductive. The doctor has only a one sheet piece of paper faxed over from another doctor. She has no other medical records. (I was not told to bring any medical records along with me, or I would have happily supplied her with some.) The doctor asks an assistant to have medical records faxed over from a nearby clinic. The five pages of information provide little more than my demographic information and vital signs. The doctor is frustrated no actual medical records are sent.

The doctor tells me she can do nothing. She mentions I should travel six hours to a clinic in a far away land. I protest. I am tired, so tired. Traveling long distances for a doctor's appointment is something I am trying to avoid. Hence, my appointment with this "local" physician, who is still located 45 minutes away from my home. The doctor does not seem to grasp the concept that I tire easily. Traveling is very strenuous. The doctor tells me I can travel to my appointment, rest the night and then have the appointment the next morning. Then I can travel back home. Obviously, this woman has no idea how energy draining it is to ride in a car. The constant motion, braking, turning and having to breathe cold, dry air through my portable ventilator for six hours is very taxing.

Moreover, it is very tiring having to unload the car and move into a hotel for the night. Finding outlets near a bed to supply electricity to my medical equipment is a constant challenge. Additionally, after a long day in the car, my body is screaming in pain. Sleeping on a well-used hotel mattress translates into me not sleeping due to pain and my brain being confused. (New locations are very stressful for me, especially small spaces such as a hotel room. I have balance and double vision issues. Trying to maneuver around a small, unfamiliar space means my brain is working over-time trying to figure out where everything is located and interpreting the visual information to prevent me from running into nightstands, walls, luggage, beds, etc. Inevitably, I will bang into something and have a lovely bruise for a souvenir.) And lastly, in the morning, I have to pack up all my medical equipment, load it all back into the car, then press on to an appointment and ultimately make the long journey back home.

I can see from the doctor's lack of understanding about having a chronic, energy-draining medical condition, she cannot grasp how simple tasks can require so much stamina. I tell the doctor I do not travel well. The doctor retorts, "It is hard for people who are comfortable at home to leave their home. They do not want to leave home when they are so comfortable." Although the doctor does not specifically say this is the reason I do not leave home, her use of these words at this point in the conversation implies it.

I nearly want to laugh. "Oh doctor. You got me! That is it! I am so comfortable at home. I have plenty of outlets and extension cords if my device's cord cannot reach an outlet. I have climate control, am familiar with all my surroundings, have wide walkways and doorways which prevent me from banging into them, and have a soft, plush bed. The environment is not chaotic--there is very little noise, and I do not have to have the stress of people moving, bumping into me and making noise on their mobile devices. Yes, my home is the best place for me. There is no place like it!"

As much as all these statements are true, I long for the ability to leave home. To feel the heat of the sun on my face and the wind in my hair is such a luxury! To have the energy to go out with friends, eat at a restaurant and freely go about life without lugging around medical equipment and without feeling as though I am going to die from complete exhaustion seems like bliss. Yes, that would be a grand life, but that is not my life. If I want to survive from day to day and avoid life-threatening complications, I need to do everything I can to protect my energy levels. Will I or won't I go to the clinic so far from my home? The answer will most likely depend on if the referral is made and if I am accepted as a patient at the clinic.