The Truth in Video Form

To My School

Dear Staff and Students at DCHS,

I wish there was a way for you to walk in my shoes and feel just an ounce of my pain, but as that is not possible let me and try and explain things to you. First off, there is something that I want to say to all of you, I did NOT choose this life, I did NOT choose to become sick, it is just what happened. I didn't ask to know the inside of hospital walls better than I know the inside of the school walls, that is just a side effect of having a chronic illness. I didn't choose to fight for my life, I just have to.

With that said I am going to speak out towards individuals or groups now starting with teachers.

To All of my Teachers, please understand something, and that's you only see me on my "good days," the days when I can push the pain and the nausea down far enough to function, so when you say I look like I'm feeling good or don't look sick, you are only seeing one side of this monster of a disease; the mask I allow you to see, because the real truth about this monster is ugly, it's laying on an operating table not knowing if you will wake up, its screaming from the pain that cannot be treated, it's being so weak just getting out of bed is impossible. Also know that I don't take staying home lightly, it is a hard decision for me, one that often feels like it is going to tear me apart some days. I want to come to school, I go back and forth between staying home and going to school, before I make my decision, which is sometimes tearful, I fear not coming to class and the outcome it has.

To The Teacher Who Compared Me to Another Student Who Had Been in the Hospital, me and that student are not in the same situation. In fact we could not be more different, there was and is a treatment for that kid but there is NOTHING that treats what I have, so comparing us is like comparing apples and oranges, for lack of a better analogy.

To The Teacher Who Yelled at Me for Not Meeting Your Expectations, you made it sound like I am not putting forth the effort needed. Let me assure you that I am, there are many nights I am up into the wee hours of the morning doing homework to get caught up. I'm sorry that I am not caught up the day I return, but that shouldn't be expected of any student who has been out sick, let alone one with a 504 stating I get extra time to make things up.

To The Teachers Who Don't Answer My Emails, I don't send them just to send them. When I send an email I am trying to keep you updated on things, including when I will be back at school, as well keep me up to date on what is being done in class. This does NOT mean I will be fully caught up with the class, it means that I want to know what is missing so I can, in the moments I feel a bit of relief from my symptoms, work on closing the gap between what you are doing and where I am in work.

To The Teacher Who Made a Rude Comment about Me Wearing a Mask To School, it's bad enough that I have to deal with other students being rude about it, why do you have to add to that? Your an adult and a teacher, someone who is suppose to stop the bullying not add to it.

To The Teachers That didn't Give Me Work Before I Left for Mayo Even Though I asked, I've seen several of you give work to other students before they left for a few days, so why did you tell me you don't plan ahead so couldn't give me anything even though I had been warning you of my absence for weeks? I didn't need all of the work I was going to miss but a little of it would have been nice and would have helped me avoid my current situation.

To The Teacher Who Has Gone Out of Her Way, thank you. There is no way that I can convey what, what you have done for me means. I can't tell you how nice it is to see one friendly face among the crowd. To have one safe room in the entire school. To know one person in the building supports me. It means the world to me.

Now I am going to address something things to school administrators and others who don't directly teach classes but are involved in the "politics" that go on in a school.

To Those Who Have Told Me I Won't Graduate or Be Successful in College, aren't you the ones who are suppose to me encouraging me, not breaking me down? That is at least what I thought you where suppose to do, but maybe I am wrong. Either way I'm not listening and can't wait until I prove you wrong.

To Those Who Set Up Countless Things to Support Other Sick Kids but Won't Even Let Me Show an Awareness Video, why do you favor those kids? What did they do that I haven't? Now let me say this, I am glad they where shown support so don't think otherwise. I just believe you should treat all students equally, if you send cards to one sick student one should be sent to all sick students. If you help raise money for one sick student, the opportunity should be there for all sick students. I don't want special treatment I want you to treat me like you have the other sick students.

To The Person Who Denied My Acceptance Sophomore Year, I don't think you understand the effect that action had on me. It took me away from a school, that the year before, I had called my home. It put me into a school with someone whom I had a restraining order against, and allowed him to harass me more. I cost me friends, who upon my absence moved on when I was at a time when I needed them most. And all of this because I spend 52 days in the hospital, that wasn't my fault, I begged to be released daily, that shouldn't have been held against me.

To Those Present at My IEP Meeting, I don't know what all was said as I was forced to sit out of most of the meeting, but you did me no favors. You guys acted like you didn't want to deal with me, and still do. You caused me to loose over half a semester of work, to start all my classes over online because it was the only option YOU thought would work no matter what me and my mom said you always came back to that. Not only did I loose the work I had fought to get done, I also loose my academic honor diploma. That meeting was suppose to be about what would be best for ME but really it was about what was easiest for YOU.

To Those Who Continue to Ignore My Family's Emails About Things Needing to Change, why is it that you don't answer any of the emails expressing us not being happy and that say something needs to change? You guys are the ones who set up the current situation so now you need to help us get through it, because it has several problems, and set up something so we can change it come the start of the  year.

To The Nurse Who Was Always There, thank you for listening to me. For taking the time to get to know what was going on and to genuinely care about it. For not doubting me when I told you I wasn't feeling well like most people do. For comforting me when things became to much, or I had just been yelled at by a teacher and was in tears, because sometimes that is all that was needed. Thank you for what you do.

The last part of this letter is addressed to things students at my school have said or done.

To The Boy Who Pulled Out My Feeding Tube, I don't know who you are as the school claims they can't see either one of us on the video feed from that day, but you should know the amount of pain you caused me. That tube is what sustains my life, it's not there just because, so you pulling it out forced my family to make an emergency trip to the hospital for me to have the two foot tube threaded back into my body. You shouldn't have walked away from that indecent without being consequences. I don't know if what you did was a dare or something but it was NOT in anyway funny or just a prank, it was a form of bullying or even assault.  

To The Kids Who Make Fun of Me, I've never done anything to you so why do you think it is okay to bully me? Your words hurt, but the only thing I have to say to you is be glad it's not you. Be glad it's not you who needs to wear a mask to keep illnesses at bay, be glad it's not you who is sick because if you where I don't know if you could handle what you do to me, as bullying is really just a reflection of how you feel about yourself.

To Those Who Stand Up For Me, Thank you. You guys are wonderful friends, and I don't know what I would do without you guys.

Sincerely,
The "Sick Girl"
The "Problem Student"
The "One Who Won't Make it"
Bri H. 

                                                    

Back to School and Dry Sockets

   So Wednesday was the first day of my senior year of high school. The first day is a rather routine thing to most families. The kids wake up early, put on their first day of school outfits and take their backpacks stuffed with pencils, notebooks, folders and other standard school supplies off to the bus stop for the first of 180 school days before summer comes back around. For me, have a chronic illness and a feeding tube, going back to school isn't as simple. Along with all of the school necessities, I have to pack medical supplies.

Me on my first day of senior year. :) 

  To start off I need to pack all of the medications I will have to take during the school day. My school required them all to be in original prescription bottles so this means a trip to the pharmacy to get extra bottles with labels for all of the meds that go to school. I then transfer a five days worth of meds into each bottle, meaning each weekend I bring home all of the bottles, have the syringes washed, and then start the process over again. All in all I take 6 meds everyday at lunch, a combination of blood pressure, nausea, and stomach medications. To go with it my school nurses office must have a form filled out so that they are allowed to let me take my required medications everyday.

Here are my meds packed for a week.

Two are pills the rest go through my feeding 

tube. I know in there are 7 meds in this

pic, one goes with the dry sockets part of this post.

   After packing all of my meds I also have to pack a kit that is full of supplies for my feeding tube to leave in the nurses office. This kit is used in case something where to go wrong with any part of my feeding tube during school hours, causing leaking, excessive beeping which is really annoying and other students question, or the loss of my tube where I would have to replace it with an emergency tube to hold my stoma (hole in my stomach) open until I can get to the hospital to get the tube replaced.

Here is everything that is included in my kit at school,

it includes extensions for my tube, a new bag for my pump,

Benadryl my last resort nausea medicine,

as well as a extra g-tube.

    That is all the packing that goes into being medically complex and going to school, but there is another part that goes into all of this and that is actually being at school with new teachers and classmates that have never had classes with me. There is a lot of explaining that goes on in the first few days and even weeks, kids are curious and teachers have to know in order for things to work smoothly. I have a 504 plan which gives me certain accommodations in school due to my illness, but those aren't sent out right when school starts so that leaves me explaining to teachers different things, such as the fact that I have a second set of books that stay at my house because I physically cannot carry them back and forth, or the fact that I am allowed to carry a backpack at school because it is attached to my feeding pump when student according to the handbook cannot carry them around school. Then there is the beeping of my feeding pump, that is always the best thing to explain, because I swear no matter how many times I warn my teachers they always forget and then a week or whatever down the road I beep and they think it is someone's cell phone and get all "Give me your phone," and I have to remind them that it's my feeding pump while the entire class looks at me like I've grown an extra head. 

     This year I am once again taking 5 classes per semester meaning my school day starts at 8:45 and ends around 2. Having the body I do, and the health and energy I do, that is quite a bit to do in one day and that is all without counting medical appointments that I have to go to and homework time. My last class is also a Gym class as one is required for every student to graduate no matter what the circumstances are. I am in Adaptive P.E. which I guess is a fancy way of saying there are only seven kids in the class and all have special circumstances that need accommodated at school. I am honestly not a big fan of the class at all, there are things I am not so happy about surrounding the class but I'm hoping it grows on me so I'll keep those to myself. I'm not sure how health-wise this school year is going to be completed but I do know this monster of a disease has knocked me down a million times but I have stood up a million and one times so I'm not giving up I'm going to just keep swimming and get my diploma in June.

     Now on to the second part of this post, Dry Sockets. A week and two days ago now, I went into an OR and had all four of my wisdom teeth removed. Things started out rocky with the surgery having to be moved from an office procedure to being done at the hospital due to my POTS, but it seems with me if something can go wrong medically it does. So despite my best efforts I had one dry socket packed on Tuesday, and then Tuesday night I developed another dry socket on the other side where my lower wisdom tooth was removed. So I ended up having to leave school Wednesday to have the second packed and then again of Friday to have both lower dry sockets packed for the second time. As of right now we don't know how many times the sockets will have to be packed but do know I have to leave school again early Monday for another trip to the oral surgeons office. So to add to the toll having a chronic illness takes on school and my body, we are now fighting effects from surgery causing a lot of trips to a doctors office as well as me to be on pain meds just to try and fight something a normal person wouldn't have much of an issue fighting.

Note to all Doctors.

This wasn't the post I was planning on making today but this is a spur of the moment kind of thing as my mom has been trying to get a hold of my oral surgeon because of some issues with pain, but she has not gotten a call back after they told her he would call her back in 20 minutes, so this next part is for all doctors out there.....

Dear Doctors,

        If a parent of a chronically ill child calls you worried about something call them back. These parents aren't calling your office because of something minuscule, like the sniffles. If they are calling you they are genuinely worried about their child. If their child is complaining of pain, they are in a decent amount of pain because most chronically ill children are in pain a lot of the time, so they aren't complaining about just any old ache. These parents aren't the parents that are going to overreact, they have handed their babies to surgeons, watched over them as they have been hooked up to numerous tubes and wires, they have seen their child in their worst moment.

        Over the time that their child has had a chronic illness they have learned the difference between when to call a doctor and when things can be managed at home. The difference between when something is just a flair of their disease that just has to run its' course or something that needs to be addressed by a doctor. As well as they know when a flair becomes something that should be of concern.

      So my point in writing this is that when a parent of a child with a chronic illness calls your office and asks the nurse to be able to talk to you, please take the time to call them back because these parents aren't going to be the type of parent who call you over nothing.

Sincerely,

A Chronically Ill Teenager

Invisible Illness

      As I sat waiting, I watched young children playing with toys brought out by volunteers or standing mesmerized by the rather Finding Nemo like aquarium at the left side of the room. While kids my age played games on their phones or i-pads and text messaged their friends. We all look like any kid you would see on the streets or in school, but we all had one thing in common. We are in a waiting area at Cincinnati Children's Hospital.
      You see we are all fighting or have fought a serious illness but by just looking at us you would never be able to tell. That is because most illnesses are completely INVISIBLE. In passing we all look perfectly healthy, but if you where to turn us inside out you would see a body at war with itself. You would never see the fact that we could be in debilitating pain, or that we struggle with nausea so bad it makes the world spin by just looking at us.
      This leads to a lot of misunderstanding, judgement, and sometimes even harsh words. There are people that don't believe me when I say I am sick because I look perfectly healthy. Classmates and even teachers assume that I am skipping school when I have been gone for a week, when in reality I am too sick to get out of bed or have been admitted to the hospital. Kids make fun of or stare at me for always carrying around a backpack, my one visible sign of illness, when that backpack in my lifeline, my equivalent to a lunchbox slowly feeding formula into a feeding tube.
      With that said school is about to begin for me or for other has already begun, my one request of you and your children this school year is to not judge. Don't assume something when you have no clue what is really going on inside someone. They could be fighting an Invisible Illness. Fighting for their lives. Instead offer a hand if you see a classmate struggling with something, offer to share notes with them if they have been gone for a while, ask questions instead of staring because for most of us Invisible Illness Warriors we will be more than happy to explain.

Dear Doctor Poem

So I am not usually a person who shares my poetry with people, but I think because this blog is to give you a glimpse inside my world and a place where I can vent. that sharing this poem would be a way to show you what goes on in my head with having to deal with all these doctors, and treatments........

Dear Doctor,

I'm sorry I don't go by the textbook, 

I'm sorry you don't know the answer,

I'm sorry the pills didn't help,

I'm sorry my work hasn't cured me.

Dear Doctor,

I remember you yelling at me,

Calling me a baby,

When I was afraid to do the procedure awake,

And you compared me to other kids,

When I'm obviously not them.

Dear Doctor,

I Remember you telling me this is in mt head,

Because you couldn't figure it out,

So it must not exist,

I must be causing this myself,

When I'd give anything to make it go away.

Dear Doctor,

I remember you taking away my mom,

You said she was neglecting me,

She couldn't even ride in the ambulance,

You made her go to court,

When she hadn't done a thing wrong, but bring me to you.

Dear Doctor,

I remember when you said it wouldn't hurt,

But the pain was excruciating,

And you wouldn't do anything,

Because you think I just want the drugs,

When in reality I can't stand they way they make me feel.

Dear Doctor,

I remember you giving up,

Saying there's nothing you can do,

That I need to wait to get into new doctors,

Because they are better,

When I thought you were suppose to be the best.

Dear Doctor,

I didn't ask for this, 

The never ending pain,

The dizzying nausea,

The debilitating fatigue,

The plethora of medications,

The numerous surgeries,

The piercing stares,

Or the loss of everything I knew.

Dear Doctor,

I didn't need your threats,

I didn't' need your cruelty,

I didn't need your judgement, 

I didn't need you impatiences,

I need you to honor your oath,

To do no harm,

And add to the strength I have,

The strength you will never understand. 

Doctors are not All-powerful

       So it has been a long time since I have posted on here. With that said I am going to try and post an update on my circumstances and make my point all in one. Back in March I was finally given my diagnosis after a trip to Cincinnati Children's Hopsital. I have Postural Orthostatic Tachycardia Syndrome or POTS for short. This is a form of Dysautonomia, or dysfunction of the Autonomic Nervous System (ANS). The ANS is the nervous system that controls everything that you don't consciously think about; your heart rate, blood pressure, digestion, body temperature and many other things are regulated by your ANS. This is what causes my wide range of symptoms because in layman's terms my nervous system "Short Circuits" causing me to have a high or erratic heart rate, low blood pressure, severe nausea/vomiting, random fevers, and all of my other symptoms. Right now I am back on 24/7 tube feeds to my intestines and am on 13 different medications to try and treat my symptoms.
       Now if you read my last sentence again you will notice I said that all of my medications are  just to try and treat my symptoms, this is the part of this post that is going to go along with my post's title. One would think having a name to call the disease that has torn my body apart would make treatment clear, but that is where one would be wrong. Knowing what to call my illness makes it harder to treat. As only select hospitals in the United States treat Dysautonomia, out of that list of hospitals very few treat children under the age of 18. Right now my family and doctors are trying to get into contact with the hospitals that treat children but so far we haven't had much luck one is on a six month wait for a nurse and a year wait for a doctor, another said my home hospital should know how to treat me when they don't, and the third we are waiting to hear from.
      While we are waiting on the hospitals that specialize in Dysautonomia to get into contact with us all I have are my doctors at Cincinnati Children's Hospital. Don't get me wrong the doctors in Cincinnati are outstanding and are the doctors I probably owe my life to, but they are not specialized enough in Dysautonomia to know how to treat me. Even though they are some of the top pediatric doctors in the country (number 3 in GI and number 9 in cardiology) they are at a loss when it comes to what to do about my constant headache and relentless nausea and this is not for a lack of effort. It comes from the fact that POTS is an illness that varies from person to person and that they are not specialists in that area of medicine.
       A lot of the time we, as human beings, want to say that because this doctor got his medical degree he should be able to make us or our loved one's comfortable, but this is just not the case. Doctors are not gods, they only have the resources given to them at their disposal, and in the grand scheme of things disease is more powerful than these resources. Pain is stronger than the strongest pain medication known to man, because it is a sign that something is wrong and being such must be felt. Nausea is stronger than all of the nausea drugs stocked in a pharmacy, because it is the body's way of getting rid of things it sees as potentially harmful, even if they aren't. Disease will always find away around medical treatment, because without disease there would be no need for doctors.
      With that said I don't mean to crush your sense of hope, because that is not what this post is about. What this post is about is understanding that there are limits to medicine, and as much as we don't like these limits we have to eventually accept them. But we don't have to accept them forever because the medical world is always turning, new advancements come about everyday and I fully believe that someday it will be my day. My day for the suffering to end, my day to finally be out of pain, my day to eat a full meal, just my day. These days may not all come at once but they will come. They may come from being sent to another hospital, they may come from right here with my home doctors, but until that day comes I must learn to stand among those fighting and fight this battle as if my life depends on it, because in reality it actually might.

Update

So I know that I haven't posted on here in a while, which made me decided to finally sit down and do an update post.
    Things really haven't been going all that well. I have restarted my feeds, because we decided that is what is best for me. Since that was done I have had more energy and it has overall made me feel better.  Now we are waiting to go to Cincinatti Children's Hospital to meet up with a cardio doctor and a GI doctor and then be admitted for some tests. With the hope that they can figure out what monster of a disease is causing my body to do the things it's doing or at least they will try and make me more comfortable. So please pray for that to happen.
       Now on to school. Last semester I took a full schedule or 7 class. And somehow came out with all A's but I decided that it was going to be too hard for me to do that again as it caused me a great deal of stress because of all the catching up I had to do for when I was gone. Plus the fact that school is very taxing on my body with having to carry books and whatnot. So this semester I have dropped down to only taking 5 classes, (Geometry, French II, World History, US History and Chemistry). So far the drop has only helped in the fact that my school day isn't as long now but the amount of work I have to do hasn't changed so it is just as hard on me when I am gone.