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.

Still not using my tube

Things have been rocky recently but I wanted to type and update. I am still not allowed to use my tube and that is leading to several issues, including constant pain and nausea, bloating, acid reflex, and some vomiting. Here's a picture of the bloating after I had eaten dinner just to give you a picture of what i am dealing with.....

 

I am still taking the new medicine they put me on which is helping with the added pain of eating orally but not the constant pain. I am also having and issue with granulation tissue around my tube which is currently being treated with a steroid cream and rashes from the tape that is used to hold my tube in.

My energy levels are still very low and I have been missing quite a bit of school due to me not feeling good or having the strength to go. So far I am, by the grace of God, maintaining my weight but its a daily struggle, if not a minutely one. Prayers would be greatly appreciated because I need all the help I can get right now.

It's Been a While

Well as the title suggests it's been a while since I posted on here and I'm sorry for that but things recently have been turned upside down. This is probably going to be a long post because I am going to try and explain, to the best of my ability, what has happened recently.
So to start off with my tube fell out AGAIN, not a good thing and that happening we took another trip to the hospital, not knowing that that trip to the hospital would start  weeks of agony for me and my family. When we got to the hospital the IR doctor who is the doctor who puts in my tubes came in to talk to us, telling us that he would not put in another tube with a balloon on the inside because we had had so many issues with the ballooned tubes. So instead he made us agree to putting in a tube without a balloon that was held in by to stitches. He also refused to do the tube change with me asleep, so I went into the change fully awake. Now being awake wasn't as bad as I thought it was going to be until he got the tube about half way in and then all of a sudden it was painful every time he pushed it in, then after he got the tube in he had to do two shots of lideocane in my stomach to put in the stitches. In the end I sat up and got a good look at what he had put in my stomach and was shocked. Here is what the tube looks like.....

Now they sent me home from the hospital before the lideocane wore off and without even testing the tube, so when I got home we hooked the tube up to a drain bag and immediately noticed that the g-tube or the tube into my stomach didn't drain at all. We also couldn't use a syringe to aspirate anything. Then the numbness wore off and the pain became intense. When we found this out my mom started calling the IR department at the hospital and the feeding tube nurses trying to see what to do. In the end everyone pawned it off onto my GI doctor to make the call and that didn't happen until about Wednessday and then her conclusion was that I needed to be admitted to the hospital so they could watch my tube. My family didn't understand why there needed to be an admit done because I wasn't in eminent danger and what should have been done could still be done outpatient. So my GI doctor scheduled an appointment for me to see her the next day.

The next day we all had a bad feeling about the appointment but went anyways because I was still in a lot of pain and the tube still didn't work which was making everything worse. The called me back into the rooms where they see patients and when the doctor came in she didn't come alone. She came with her nurse manager and a social worker. Our bad feeling got worse. We expressed our concerns to the doctor and she didn't really seem to listen and then came out and said that I needed admitted to the hospital for observation of my tube. My family disagreed and that's when the had Child Protective Services come in and tell us that we had no other choice than have me admitted or they would file charges against my mom and sign the papers myself. Well this was not our first issue with CPS so my mom agreed to have me admitted.

When I got up to the ward they where going to keep me on, which was my normal ward, we went through the admissions process and then settled in for the night. The next day the doctors came in and looked at me saying they where going to try and get my g-port of my tube to work and then they left. In that day my nurses couldn't get anything to aspirate out of my g-tube no matter how hard they tried so the called the team that works strictly with tube and had them come in. They also couldn't get anything to come out but decided to leave the tube to gravity and attach it to a diaper. Now not only could the nurses not get the tube to work but they also had never seen a feeding tube that looked like mine. Through the next several days I even had several nurses that where not assigned to me come in and look at my tube because they where talking about it at the nurses desk. The next day the GI doctors came in again and said that they where wanting to see how much I could eat by mouth as well as that they wanted to try and hook a farrel bag to my tube and see if that would get it to drain. There was only one issue with that my tube is not made to take a feeding hook up it's made to take a IV hook up so it ended up taking the nurses several hours and many phone calls to find a bag that would hook up to it, and when they found one the my nurse came in and hooked up while telling me that we needed to call my tube what it actually was, a PICC line which is and IV line that goes straight into the heart. The third day I was still in intense pain so the doctors decided to cut the stitches that where holding my tube in and use tape to hold it in which helped some of the pain but not the pain I got while eating. The nurse on shift ended up calling them back in the middle of the day and they put me on a new medicine called Bentyl which helps with things like IBS and chrones. Then for about two days they literally left my tube hooked up to the bag and kept giving me the new medicine on top of all my others and watched me. Finally they decided that my tube honestly didn't work so they where going to change it, they ordered my feeds to be stopped and nothing to be taken by mouth so that the change could take place. The next day a lady from IR came up and become a part of the list of people that tried to get the tube to work saying the IR doctor wasn't ready to change the tube and that was the end of the tube change. Now the GI doctors hadn't came in that day and finally he came in around 6:30 and began talking. Basically he told us we had three options 1. Go to a mental ward because the doctors thought I had an eating disorder. 2. Get a second opinion by being transferred to another hospital or 3. go home and get a second opinion outpatient. By the time he was done talking he had decided that those three options wheren't good enough and that we needed to give him until the morning to come up with a better option. In the morning he didn't even come into the room and see me he stopped my mom and grandma in the hall and told them that our only option was for me to go the the mental ward because they where not comfortable with me just going home. That was the point in the seven day stay that I lost it. With the threat of CPS all ready investigating we got all of my stuff ready to go to the mental ward and I was ambulanced over there. We went through the admissions process while I was still pretty upset and then my mom had to leave. There they stopped my J-tube feeds and started me on a plan to work up on eating, treating me exactly like an anorexic. The doctors didn't listen to a word I said, I was constatntly in pain and sick to my stomach but they didn't care so after several days i stopped fighting and decided to be the one to take the high road because the doctors wheren't going to. For the first about 7 days in the mental ward the doctors couldn't tell me anything about the plan or even what I was fully being treated for, they kept saying they where trying to figure out what was going on. So I continues doing everything I could to go home, participating in all the group things, telling the therapists nicely that I was miserable and eating everything even if I didn't feel good. While in the mental ward I was weened fully off of my nausea medicines which made me feel worse but as I said the doctors didn't care about how I felt they just kept telling me there was nothing wrong with my "gut". Which I thought was rather odd because they left me on my acid medicine and the medicines for my stomach motility and the Bentyl the had just started which was actually helping some. After 10 days I was released from the mental ward and told not to use my tube at all.

As of now I am still forcing myself to eat all though I am still sick to my stomach and in sever pain, have no energy whatsoever, and am being made see doctors who put me into the mental ward and kept me there even though they where and still are wrong.