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.