On the 9th day of #RareChristmas Phoebe wants you to know...living rare means never losing your voice. When you are living with rare disease or caring for someone who has rare disease, you will find you have to explain yourself.....a lot. You have to explain to the doctors what daily life looks like for you/them. You find yourself fighting to keep from yelling because symptoms, patterns, behaviors, emotional breaks are all too often dismissed or overlooked. You are constantly having to bring things to their attention, trying to make them take your concerns seriously, praying if they finally hear you something can be done to help. It can easily feel like you are losing your voice. But remember, at the end of the day it is you, not the doctors, who is living, eating, breathing, sleeping rare...24/7/365. It is you who knows what is your/their normal and what is not. Never lose your voice. Speak up. Be heard. #Roar! #12DaysofRareChristmas
On the 8th day of #RareChristmas Phoebe wants you to know...families affected by rare disease have the same hopes for the new year each and every year. Hope for treatments. Hope for diagnoses. Hope for answers. Hope for cures. Hope for more research. Hope for more identification and naming of diseases. Hope for more awareness. Hope that this year sees more laughter and fun than doctors and hospitals. Hope that limitations can be lessened and experiences can be gained. No matter what this year will bring, we will continue to fight for all of these things. By never giving up the fight, we hope on New Years Day we won't just be hoping, instead we will be celebrating that they happened! #12DaysofRareChristmas
On the 7th day of #RareChristmas Phoebe wants you to know...just because you have never heard of a disease, does not mean it does not exist. We have faced, multiple times, doctors from our insurance company tell Phoebe's specialists "I have never heard of that, therefore it does not exist." This mindset has resulted in denial of coverage for testing Phoebe has needed. There are diseases that have names today that less than a decade ago were only known by a group of symptoms and a research code. There is more information about some diseases today than there was fifty years ago. Not every doctor is going to know about rare disease or even have heard of some the names of rare diseases. But to tell a family something does not exist simply because you have never heard of it, goes against the oath you took as a doctor. These diseases do exist. And these patients, who are fighting battles you could not even begin to imagine, deserve to have the same access to care, treatment and testing as those who suffer from diseases you have heard of. #12DaysofRareChristmas
On the 6th day of #RareChristmas Phoebe wants you to know...with rare disease "when you hear hoof beats, you think zebras!" Doctors are taught in medical school "when you hear hoof beats, think horses." They are trained to look at your symptoms and try to make them fit into these perfect little boxes of diseases they know about, diseases they can treat, symptoms they can make go away. But this is not the case with rare disease. Not every disease fits into these little known boxes. Not every symptoms can be made to disappear by taking a certain medication or following a certain regimen. Not every disease can be cured by going to a doctor. On almost every one of Phoebe's trips to the hospital, at least one doctor tries to push on us that they have "figured it out, have the magic cure, know how to fix her". They look at the symptoms she is experiencing and think horses, because that is what they are trained to do. It is every once in a while, like we experienced today, you come across a doctor who doesn't try to fit her into that box. Who hears the history and symptoms and knows she is a zebra. And the doctors who are aware that there are zebras out there, make all the difference in the care Phoebe and the other rare warriors receive. #12DaysofRareChristmas
Phoebe fought the best she could to stay home, but she couldn't fight it anymore. IV fluids and lab work were needed at the ER today.
The staff at the ER was some of the best we have had while there! They gave her a mask to help protect her and were attentive to her extensive history. They consulted with her main doctor to ensure she was getting the right care and not once did anyone try to push that "miracle plan" that would be the one to "cure her". (As many have done in the past)
She needed the IV fluids for dehydration, which is unfortunately something she goes through regularly, which makes her a pro at needles...no crying, no flinching, just sticks her arm out and stays still. Her lab work, showed what it always does, confusion.
She is happy to be home, lounging on the couch under her blanket eating a bagel and, as she promised the staff at the er, drinking a large cup of water.
On the 5th day of #RareChristmas Phoebe wants you to know...the disease is always there. Some days are good, they're filled with laughter, joy, smiles, and playing around. Some days are bad, they're filled with tears, sadness, pain and being curled up in a blanket. But no matter the day, good or bad, the disease is always there, and it's presence is always known. The symptoms never go away, they just lessen or intensify, with no rhyme or reason to why they do. So you make the most of the good days, because you never know when they will change. And you fight through the bad days, hoping they don't last too long. #12DaysofRareChristmas
On the 4th day of #RareChristmas Phoebe wants you to know....the spoon theory by Christine Miserandino. The theory is simply a story that explains what it is like to live with a chronic illness or disability. A person who is chronically disabled or ill only has a limited amount of expendable energy each day. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. A person living with chronic illness or disability only has a certain number of spoons in their possession each day, and every small action a person takes can result in a lost spoon. Once a person loses a spoon, it is very hard to get that back until after a full night’s sleep. Simple actions like getting out of bed, taking a shower, walking, and driving can require enormous amounts of energy that people don’t have. These chronic illnesses or disabilities can be visible or invisible. You cannot look at a person and tell if they have a chronic illness or disability or not, and these illnesses are not always physical in nature.
On the 3rd day of #RareChristmas Phoebe wants you to know...living rare comes with limitations. You are not always able to do things other children your age do. You are not always able to experience things your siblings have as they have grown. You are not always able to participate in activities and gatherings with friends and family. Phoebe experiences many limitations each day. And no matter how routine her limitations are, or how "used" to them she has become, she still longs to be just like her sisters, able to do all the things they get to do. #12DaysofRareChristmas
On the 2nd day of #RareChristmas Phoebe wants you to know...living rare measn fighting to stay out of the emergency room. With the excitement of Christmas, looking at the lights, waiting for Santa and the joy of playing with her new toys, Phoebe has a difficult time pacing herself. She doesn't want to miss anything and does not take the rest or fluids she needs. There past few years she has needed trips to the ER the day after Christmas for IV fluids and rest. And while we have not had to make a trip to the ER yet today, she is balancing on the edge of possibly needing to go. So it is with the tricks her team of doctors have taught us that she is fighting very hard to stay at home. #12DaysofRareChristmas
On the 1st day of #RareChristmas Phoebe wants you to know...living rare usually means you have a large team of doctors that you visit frequently. Phoebe has a team of 16 doctos in 12 specialties across 3 states that work on her care. Having a team of doctors that size means she has an appointment with on of them just about every week, sometimes she has multiples appointments a week, and occassionally she is lucky to have a week with no appointments at all. But whether or not we have appointments during the week, we are in constant communication with her team of doctors discussing her case, reviewing results, brainstorming ideas, or updating on her current status. #12DaysofRareChristmas
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.