Monday, July 28, 2014


It's been a while since I have last posted almost two weeks actually. I just haven't had much to say. Things are moving right along here in our house. We have been trying to keep ourselves busy as summer is winding down to a close. So far our activities this summer have included the waterpark, bowling, movie watching, bike-riding, coloring, dancing in the rain, Carowinds, arts and crafts, preforming surgery on stuffed animals, and a few other things here and there. We went to SkyZone last week right after Tyler's appointment with our psychologist in the GI clinic! We saw some pretty cool friends in the waiting room who were also waiting for appointments and we all got to talk and hang out for quite some time. We even invited one of them to come to SkyZone with us where we had a blast!

We did have some issues with the employs who kept telling Tyler he was unable to jump with his backpack. Of course this made Tyler very upset as they were being quite rude about it. We even said he was connected to it showed him his tubes and was like there is psychically no way he can take it off! He does everything with his backpack even goes swimming! It has never stopped him before! Why should it now? The owners came over to talk to Mom and everything was sorted out but Tyler was crying his eyes out at this point and he was so upset that he couldn't jump. He was just completely unconsolable! It took us an extra 30 minutes to calm him down and he was in a bad mood the rest of the day. Although he did get to go jump with his backpack on it made him upset. We talked about it once we got home and he was angry but seemed better about the situation.
On this day we also tried the Strawberry Neocate Jr. formula. Which is a brand new flavor they unleashed. I have to admit it is much better than the other formula I have had to drink in the past  but it still sucks and I really don't want to drink it again! My Mom also made ice cream out of the formula and while Tyler loves it I think it is the worst thing ever! At first it was great but then comes that after taste which just made me want to puke! If you are able to drink Strawberry rather than the other flavors I do recommend! My least favorite flavor is Eo28 Splash Grape/Raisin that one was horrible! While the best flavor before strawberry came around was Vanilla.

My health has been great lately! I am gaining quite a bit of weight which isn't good at all because it is too much! We will be decreasing my calories in hopes it stops it and maybe I will be able to loose some of this extra weight which I have now gained. We worked some things out with my allergy appointment last week and we are trying to get me in to a new group of doctors so I hopefully can get what I need to help fix all these problems we are having!

Otherwise we are just waiting till surgery. Which brings on the actually topic of this post fear. Yes I am scared to get this surgery done. No I am not afraid of the surgery itself. That part is easy for me. I have had to have way too many surgeries already in the past year I am used to that part but what I never ever get used to is the recovery process. It changes every single time. My reactions to anesthesia get worse every time I am exposed. Premedicating really doesn't help. I wake up with a massive migraine thankfully we have seemed to get rid of my allergic reaction symptoms but I still wake up feeling awful. As you know I have a migraine that has lasted for almost two years now. I have not gotten a break and it's 24.7 constant always there. It sucks and being put under anesthesia makes it worse. I get so dehydrated despite the constant high amounts of IV fluids I receive daily, I sleep for days and weeks on end and get almost no relief with the most typical pain medications. I usually end up admitted just because I am so bad and the recovery process lasts just about a month! I know J-tube surgery will be hard in the first place and I'm really not sure what to except. I just know this is going to be hard and brutal on my body.

So yeah to put it that way I am very fearful. I am not the type of person who is scared easily or shows her emotions to people always but this time it's different. Everyone keeps telling me everything will be okay or everything will be good and I just keep shaking my head saying okay trying to believe them because I know what is going to happen. You can't lie to me. I've been here before. The unknown is what I'm afraid of. Not sure what to expect as you could say and it isn't like someone could tell me what is going to happen because everyone is different. Plus my reactions have never been the same it isn't like there is a pattern in a way that we can fix this somehow? I wish there was that would make things easier.

The definition of fear is the belief that something is going to cause pain. Which I do believe something will cause pain and I know what will cause pain. I mean the surgeon said in general the surgery is going to be painful there is no lie about that! I just hope everything goes okay with how I tolerate it afterwards. Emotionally it's exhausting to be in that much pain and just feeling so awful that you can't move or do anything but sleep. I want this to be as easy as possible but I know easy isn't how things work always. We can all believe that everything is going to go perfectly fine until it happens you can say that as often as you want but I don't know. Maybe I am a realist and I have just excepted the fact that this is going to happen and we all know I have reactions and we don't know how to fix them so it is just going to be there. I just don't know how to handle that. It is kinda like just waiting for something bad to happen because you know it's coming you just don't know when.

I feel like I am going on about nonsense now so I probably should stop. I don't even think I accomplished what I really wanted to with this post but oh well. We will deal with that another time. I will try and update as soon as possible after surgery. My surgery is gonna be at 10:30 on Thursday morning. I will be inpatient for a minimum of four days after that we don't know how long it will be just depends on how well I tolerate things but I want to be home as soon as possible!

My friend Michenna wanted me to share her RSD Awareness Video so here it is.... Enjoy!

Also here are a few pictures I've taken over the past two weeks of some of the fun activities we've done!


  1. J-tube surgery is a walk in the park compared to most other GI procedures. Don't be afraid, it wouldn't take anyone a month to recover from. You will be just fine.

  2. I wrote a book to you and then it deleted it. My email is I currently have a j-tube, gastroparesis, pseudotumor cerebri aka idiopathic intracranial hypertension and would love an opportunity to talk to you more. You are an inspiration and I wish you nothing but the best of luck and wishes.