Thursday, June 27, 2013

Invisible Illnesses

"You can't see it, but I can feel it. You don't understand it, but I deal with it on a daily basis. You either think I'm lazy or you feel sorry for me, but I am stronger than you'll ever know. I fight everyday. I don't want your sympathy. I just want to be treated with respect and I want to feel better. I've forgotten what that feels like."

The whole point of an invisible illness is that you can't see it that's the beauty of it all. I look just like you my insides just aren't like yours. Some people think well if you can't see things it isn't real but it is there and it is real. It is kinda like oxygen it is there people just don't see it. Yet everyone says it is there because it is there. It is the same way with an invisible illness.

We have to fight everyday whether it is to get out of bed, participate in normal activities  and push through the pain. It isn't that we are lazy trust me. I want to do everything that you can do in everyday life it is just that sometimes I can't because I'm not feeling well or it hurts too much. We have to be strong and push things aside just so we can function like you everyday.

I don't want everyone to feel sorry for me because I am not sorry for myself. I tell people I have a rare disease and the number one reply is "I am sorry." It isn't their fault that I am sick. My Mom and Dad aren't angry. I'm not angry. No one is angry that I have an invisible illness. It just happens and it is not a single person's fault that this happened. Treat me the way you would want to feel if you were me. I am a normal kid. I just have a few extra things that I have to do and carry with me. Like I can't eat food, I have a feeding tube, I carry around an epi-pen and benadryl everywhere I go in case of an allergic shock. It is those type of things that I have to do that most people don't. I could think of a hundred more things It does make me feel different from everyone else but I don't feel much different. I just don't eat.

I want to feel better! I would trade anything for one day without having to worry about being sick. I could get so much done it wouldn't be funny. I could eat!! Cake, ice cream, pizza, steak, and the list goes on and on.  The first time I got my feeding tube I started feeling normal. I told my Mom wow! This is what a normal person feels like! It's amazing! She just laughed but I was serious. Then I started getting sinus infections and headaches and I haven't gotten better since then. So now I have again forgotten what it is like to be normal. It takes a lot out of you being sick we can't be normal even though we try.

I forgot who wrote that quote up above. I think I found it online somewhere but there was no author behind the quote so I guess the person is anonymus.

Anyway, I have been doing okay. I'm feeling decent besides my headaches. My stomach has been hurting and I haven't eaten corn in 48 hours so I know it isn't the corn unless it is a delayed reaction. I've been so frustrated lately though. Just upset, worried, and sad about everything. I just want to eat, I want to do this and that and everything else but I can't. I'm okay even though I'm not okay. I just haven't worked all that out yet.

Wednesday, June 19, 2013

It's My Birthday!

So I have an update: I am still eating corn and it is going decent. My next trial is a special bread. Not sure what it is called. I have to see if I like the taste. If I don't like it I don't know what I will try and eat next. There isn't anything that I want to trial. On Tuesday, we went to the dollar theater in the morning with friends. In the afternoon we had dentist appointments for all four of us kids. Let me tell you I like our dentist. They care about us a lot. Since Tyler and I have allergies we aren't allowed to have the normal stuff that the other kids get. Last time they were safe but this time the ingredients changed and now they contain a milk protein  So Tyler and I couldn't use the fluoride. Before we even got started they made sure it was safe for us to get our teeth cleaned. Obviously it wasn't but we got our teeth cleaned without the fluoride. Tyler also has to bring his tooth paste to the dentist because he cannot do the tooth paste they use. I however can. After the dentist we signed up for soccer. I was wearing my eosinophil shirt with all the pronunciation. That no one who is normal can seem to read. She stared at me like an alien and then was like "I don't get it" So I told her what it meant and she was like gotcha. She thought I was a big science nerd instead of it being a disease. I wish I was a science nerd instead of having a disease I think it would be more fun! Anyway today is Wednesday and it is my birthday! I woke up and got allergy shots. First you have to tell them your birthday the first lady never caught on that today was my birthday but the second lady did. She was like well happy birthday. The doctor just laughed. Like it was funny because I was getting allergy shots on my birthday. the nurse continued on the conversation and said I am sorry you have to get shots on your birthday. Then she said Bless your heart and I walked off because I was done. I made myself a birthday cake made of Dum Dum lollipops, Dum Dum Candy Canes, and smarties. The base was an empty Kleenex box. Mom called the pulmonologist because I need to get back to seeing one because we can't get my asthma controlled with the allergist. She called to see a new doctor because our old one left and they told us we could either pick an appointment for Thursday or not until September. So of course we pick the appointment for tomorrow! I'll get PFTs done and hopefully we will be able to discuss my lung issues and find a new situation to address the issue. I also have an orthodontist appointment in the afternoon. We are packing for the beach we leave on Friday. Tyler's dry suit came in so he will be able to go in the water and swim like a normal kid because of his central line he is not able to get his line wet. We will be gone until Monday I believe. Then we have a week free of appointments besides Tyler's therapies.

On another note I want to let everyone know that this year I wasn't able to have cake or ice cream or any other special treat for my birthday. I want everyone to realize that there are people out their who can't take a bite of their cake. We have to be extremely creative and find a new idea for us to be able to enjoy a treat but it doesn't compare to what others get to eat for their parties. At my party in July we won't be eating food. I'm just going to have a few friends over to swim. I'll ask mom to make snowcones but that will be it. Unless I still have corn then. Maybe, we will add some popcorn to the mix.  I am okay with nothing as long as I have friends around just to hang out and pretend like it's a nomral summer day and not a birthday party.

Hope you guys enjoy your day as much as I did. I got neon pink converse for my birthday.

Thursday, June 6, 2013

Summer Camp

I went to CCK on Saturday for camp for a week and I had an amazing time with no major medical issues. It was so much fun!! I made some amazing friends that will last a lifetime. Anyway now I am home and resting. I'm exhausted we spent every single waking minute doing something it was tiring. On Wednesday night on of the staff members made me an ICEE that was Michaela Safe. I loved it so much. It makes me happy when people actually care enough to take their time and do things for me. Nothing else to do now that I am home. Just a lot of resting. I feel too tired to do anything so I'll probably sit around on the TV all day catching up on my TV series. No major appointments are coming up. At least I don't think so....My birthday is in 13 days though!!! AHHH I'm so happy. If I really want to I can take my permit test but I'm not really interested in driving but I'll probably just do it anyway. Anyway I am so happy to be home and now I can rest. Good Night to all. <3