A Letter to the Class of 2015

Dear Class of 2015,

                I know we all have Dreams. Dreams to succeed at college, dreams to become a teacher or a lawyer or whatever else you want to be, Dreams to get married and start a family. Those are all admiral dreams, but those aren’t my dream as graduation approaches. My dream is to be able to walk across the stage and receive my diploma on my own two feet. I know that sounds odd, and maybe petty but there is a lesson you can learn from my dream. That lesson is to take a step out of the fast lane, and truly enjoy your graduation.

                I know everyone is asking you about your future, what college you’re going to, what your major is, if you’re living on campus, but if you focus just on that you are going to miss out on the actual reason you are being asked those questions, you’re going to miss out on the experience of graduating, which I don’t know about you but to me isn’t something I want to miss.

                So take it from me, your chronically ill classmate, and make sure you enjoy the little things that come with graduation. Savor walking in the processional with your class, because this is the last time you are going to do something like that before we all go our separate ways. Cherish that walk across the stage, and all that it means you have accomplished. Take a moment to look around after graduation, at all your classmates in their caps and gowns, and soak up the energy that is coming off of them. Enjoy your graduation cake, because you deserve it for all the hard work you put into graduating. Appreciate each and every person who comes to your open house, they came because you mean enough to them for them to come celebrate your accomplishments.

Don’t take the little things for granted, because if you do, in the end, you will miss out on the whole experience of graduating. For the day you walk and the day of your open house live in the moment, because it will go faster than you think. And, when it is all said and done you will have plenty of time to look ahead, but you will never be able to go back.

Congratulations Class of 2015!

From Your Fellow Classmate,

B.H.

The "Shoe" Fits

It's been a few days now since me and my mom where sitting in a room with Genetics Doctors explaining to us what this new diagnosis entailed and what it means, and the more I listened to them the more and more The "Shoe" fit. Things that I didn't know needed an explanation got one, and things that where obvious red flags where at least semi explainable.

 What "Shoe" am I talking about? Well I'm not actually talking about a shoe but a diagnosis that fits perfectly with everything that has been going on for the last four years. The diagnosis of Ehlers-Danlos Syndrome Hypermobility Type or Type III. Basically my connective tissue is missing a component making that tissue loose, and because connective tissue is the supporting architecture of organs, muscles, bones, and skin that are many problems caused by this looseness.

It explains why I've never been able to hold a pencil properly, or why when I go to the dentist the numbing shots don't work well, but those where things I didn't think needed an explanation they have just always been that way so I didn't know any different. Same with the feelings I have in my joints that are hard to describe, but have always been there, and with this odd thing I do with my jaw that my mom use to always ask about as well as my mom use to think my shoulders looked off, and that's because according to the doctors my shoulder muscles are extremely loose, which would be why my shoulders hurt a lot, and why I can do things like lick my elbow, because when I go to lick my elbow my shoulder isn't held in place so it dislocates making elbow licking possible. With that stuff the ''shoe" fit perfectly, and the doctors knew exactly what I was talking about.

But that's not where it stops, with all of the symptoms to my illness, as I gave them to the Genetics Fellow, she said she and the rest of the Genetics team already knew the EDS diagnosis before I even walked in the door.  The POTS I had been diagnoses with is caused by the EDS because the veins are made of connective tissue and with that tissue being faulty my body doesn't react quickly to changes in blood pressure. 70% of people with my type of EDS have some form of Dysautonomia. The reason I am so dehydrated is my body literally never gets thirsty, so I never have the urge to drink something because my body needs it. EDS also causes the "fight or flight" response to be easily activated and inappropriately so. This fact covers why I am almost always anxious without knowing why, why i startle easily and why I don't sleep well. My GI symptoms are severe but are caused by the EDS, the doctors don't know why these symptoms manifest but they do in about half of EDS patients. The doctor was able to explain what my stomach is doing basically you GI track is suppose to contract from top to bottom all the way throughout but with EDS it contracts randomly which would be why I can pass motility  tests but not be able to keep the meal down.  It also covers my body wide pain, and my headaches. Both are caused by the looseness of my connective tissue, the headaches are from not having stable muscles to hold my head up and the body wide pain comes from the instability of my joins.

That's just a synopsis of what was told to us by the Genetics doctors, so as you can see it's a complex disease, and now one that I will have to manage all of my life as it was born with it and there is no cure. For me that was the tough part to swallow, going from just the POTS diagnosis, which had a chance of going away completely to the EDS diagnosis with POTS caused by the EDS which can be managed but there are still going to be days where the illness wins, and getting it managed is going to be a long, tough road for me. 

POTS

Today in Rare Disease Day, and in lieu of that I wanted to try and clear up some misconceptions about my rare disease and raise some awareness about it. My disease is  Postural Orthostatic Tachycardia Syndrome or POTS, it falls under the blanket diagnosis of Dysautonomia. Basically POTS is a malfunction of the autonomic nervous system, this nervous system controls all bodily functions you don't think about such as heart rate, temperature, digestion, blood pressure and many more basic functions. Due to the vast amount of things that the autonomic nervous system no two cases of POTS are the same and two people with the disease may experience vastly different symptoms. The only symptom that all POTS patients have is an excessive raise in heart rate upon standing, as well as drops in blood pressure.


At this time there is NO cure for POTS or any form of Dysautonomia, and it is especially hard to find a doctor that is well versed in the disease as it is not taught in medical schools as well as nursing schools, due to the disease being discovered in 1993. Most of the time I being a patient with POTS am more knowledgeable than my doctors about my disease.

Along with there being no cure for POTS or any form of Dysautonomia there is not treatment for the disease itself. Yes there are thing I am doing for my POTS, but treatment is considered something that can potentially put a disease into remission or heal the person completely. For example chemo is treatment for cancer, surgery is treatment for appendicitis, but when it come to POTS all the doctors can do is treat the symptoms the disease is causing, not the actual disease itself. This means the doctors can not stop the progression of the disease, and there for more symptoms can pop up. Below I am going to make a list some of my symptoms and what we are doing for them if anything at all.....

My Symptoms

• Nausea (Nausea Medications and Feeding Tube)
• Low Blood Pressure (Blood Pressure Medication)
• Headaches (Migraine Medication)
• High Heart Rate (not being treated)
• Body Wide Pain (not being treated)
• Passing Out (IV fluids)
• Random Fevers (Tylenol) 
• Fatigue (not being treated)

This kind of shows what is typical for "treatment" in a POTS patient, all the doctors can do is mask the diseases symptoms, but nothing that is being given to me as a "treatment" will ever be able to actually get rid of the POTS or treat the POTS directly, even when I am going to be able to see a specialist in Dysautonomia there is no magic fix.

POTS Facts

1. About 25% of POTS patients are so disabled by the disease that they cannot work or attend school. 
2. Some POTS patients get better over time, while others, stay the same or get progressively worse.
3. Eat causes the body to redirect blood flow to the stomach to aid digestion, this can cause POTS symptoms to worsen, sometimes even causing passing out.
4. People with POTS have around the same quality of life as a person with COPD and Congestive Heart Faliure.
5. It often takes years for someone with POTS to receive a proper diagnosis

I Will Always Remember

Today, I've laughed so hard I couldn't breathe and I've cried while washing purple chalk out of my hair, but the biggest thing I've done today, they most important,  is I remembered.

A year ago today, February 27, the news came that a friend of mine had passed from her earthly life, to live for eternity as a beautiful angel. I met Rachael though a Facebook page for teens with feeding tubes and we connected instantly, or at least I know for me we did. We had so much in common; both of us love the color purple, hello kitty, and rainbows, and as time went on it didn't matter what was going on with my health talking to her could make me smile. She understood, what it's like to be young and sick at the same time, as to most people those two things are mutually exclusive but to us they weren't. 

Over the past year I can't count the number of times I've gone back through and read our conversations. They sometimes seem so frivolous when I look back on them now, talking about dream dates or the beach, but they were what we needed then, an escape. As I get closer and closer to February of last year the messages slow and eventually they stop all together. That is one thing I regret, that I didn't use all the time I had, but I didn't anticipate that being all I would ever have. It's not something I think about often; I push the fact that all these diseases can so quickly take any one of us away from this place. But it is the overwhelming truth, that on days like today can so easily catch up to me.

I think about how we could so easily be in the opposite position with her writing this and me watching down from among the angels, and the thought scares me. I think about her family, her sweet mom and her dad, holding their baby for the last time and it makes me angry. Life shouldn't be this way. Children shouldn't go through what Rachael did, and gorgeous angel I promise, as long as there is still breath in my body and blood running through my veins, I will not stop trying to make this right. I may not be able to bring you back but, with your memory, Rachael, I will fight to fix the way things are done, so nobody has to go thorough what you and your family did ever again. 

I will always remember, and never quit fighting. That is a Promise.

Brave Bee

Life with a chronic illness is rather like living on a roller coaster, it has its' ups and downs. One of those ups is the people you meet. From the other inpatient children, to those sitting in the waiting room with you, these people often teach you things you never knew you needed to know.
Henley Hazel Romine was one such little girl.

I met her in the radiology waiting room, with her parents and her brother, it was June 6, 2013. I was nervous but as I watched her I realized something; something that to this day I haven't forgotten. She was running around, her mom close behind, with a smile on her face. At the time I knew she had cancer, but I didn't know exactly how sick she really was because despite everything she clearly loved life and everyone around her. She taught me what strength looks like, about how to be fearless despite everything, and how to a single smile can change someone's day. 

So today Miss Henley, our Brave Bee, my tiny hero, I hope your flying high today, Happy 6th Bee-Day! <3

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.