It Takes a lot To Look This Good – physically

It takes a lot to look this good

it takes a lot for you to see cuz

i didn’t wake up like this

It took a lot to look this good

Between the medicines and the feeding tubes and the VNS and a central line

I’m pretty much a robot and each of those things takes time.

Every few days I make a few days worth of feed. The process of making feed takes a little while. My feed which I’m totally grateful for is rather smelly sometimes and looks super green and strange!

My feed is made of kale, quinoa, hemp, grapes and olive oil.

Yes that’s what I’m eating 12-18 hours a day!!

I have to blend my feed in a blender with water then I have to drain it and then drain it again and again about 6-13 drains back and forth to make sure it doesn’t clog my tube.

So I put the feed in my feed bag and the

rest in jars and put them in the refrigerator.

Once a week I go to the infusion/cancer center and get my dressing for my Hickman changed my Dressing is basically the tape type thing that covers my Hickman which is my central line basically a long term IV that is located on my chest. My dressing keeps germs from getting on the line. Because my Hickman goes into my heart. If I get germs into or on my line I could be sending germs directly into my heart! And if you didn’t know that’s not a good thing.

I take medicines daily. Some orally, some by feeding tubes both my G (stomach feeding tube) and my J (small intestines feeding tube.) have meds are used for different tubes a few times a day.

The supplies I use daily can be overwhelming.

And that’s just the normal daily stuff. Not including the things I need for emergencies and for the weekly things like my feeding tube cleaning things, my Hickman dressing changes.

Part of me is really use to all I do. I take IV Benadryl every two to four hours. Which involves me drawing the IV Benadryl into a syringe, then attach the syringe to my hickman then push it detach it, then attach a saline flush, push the flush in then detach it and clamp my Hickman and attach my curoes cap to the end of my Hickman which keeps it sterile and then done..

I eat orally everyday. I can have problems with not being able to keep my sugar up from feeds alone. and I’m always trying to use my stomach so it doesn’t become more paralyzed then it is now.

I can’t eat or drink just anything. I have over 200 food allergies but I’ve been able to find out what I can have daily. Which also has helped so much. I’ve learned how much of each thing I can have.

I have surprisingly weird foods I’m not allergic too.

Milk is a big allergy for most people. For me I can have milk. I want to point out that each of these foods are brand specific. Even the water. The ice cream is extremely brand specific! Like down to how long it’s been sitting somewhere. It’s normally blue bell natural vanilla bean that I can have.

I’m pretty much always thirsty! I can drink water, some different weird types of “soda/coke/pop/carbonated drinks” whatever you call it

I have to flush my feeding tube every few hours to make sure the tube doesn’t get clogged it takes 3-5 minutes each time to flush if I flush to fast sometimes it will hurt.

When I plan my week or day out I have to make sure I’m not doing to much in one day or doing to much in days that are back to back. Like going to the store and then going to church then going to do something with my friends or family and then doing something else. The next day if I did all that in one day I’d need to be calm relax and not do anything that next day or two days. So being careful is something I’m doing all the time.

Whenever I cook or bake which both of those things is something I love to do! I have to make sure everything doesn’t come in contacted with something I’m allergic too.

There are so many things to physically do to keep my body alive.

I’ve gotten use to my life but at the same time I’m overwhelmed by it sometimes.

So yea I might have a backpack with me all the time but I’m always have scissors, band-aids and tweezers when you need it!

My backpack might weigh 12-21 pounds at times and I might enjoy telling people I’ll hit them with my backpack if there mean but overall the sarcastic and funny things I get to say while being sick is awesome!

But overall it takes a lot. If I’m being honest some days when someone says I look good and they are glad I’m “not sick anymore” it hurts I know it’s weird but part of me wants to be like I’m still sick. My disease is killing me, but I’ve been able to stay slightly stable because I put in hours and hours and put more effort to stay this way. It takes a lot to look this good.

And as you can see from my beautiful looks the effort pays off!!! It takes a lot to look this good!!

It’s not just physically it’s mentally emotionally and financially… each of those helps me look this good..

Shayweasel is looking good

The Lord seizes my days

The other day at a wedding to photographers stood in the front of the church taking photos as the guest walked in.

Myself and my parents sat down and waited for the other guest to arrive. As the photographers took each photo the camera flash went off.

Each flash made me feel strange. My emotions went from peace calm and happiness for the bride and groom turned into something else entirely.

The peace was replaced by annoyance. The Calm was replaced by fear The happiness was replace sadnesss.

Because as each flash went off my brain went into small “barely” noticeable seizures. As my VNS (the thing in my chest that goes into my brain and also my heart went off over and over again. My body as reacting the each seizure by instead of what most people think of seizures with weird shaky movements or ticks. I was reacting what seemed emotionally. But wasn’t. I couldn’t put a stop to it. I couldn’t even try. I was… useless to each seizure.

My papa walked with me back to a Sunday school room that I stayed in till the reception.

Seizures are scary. It’s simple flashes of lights that can set them off. Simple stresses can set them off. So many small things can send my brain into overdrive causing seizures.

I’m grateful for my VNS without it, that first few times that flash from the camera went off I would have had a seizure that was uncontrollable, and it would have been a horrid seizure. Lasting minutes even hours.

The VNS calms it down. It doesn’t always stop the seizure fully. But each time I swipe my magnet over my VNS in my chest (which is what I or someone else does when I’m either having a seizure or seem like I’m gonna have to maybe have one. The VNS also has a plus that goes off every 90 seconds to help keep seizures at bay.) I try and think each time I do it that it use to be 10 times worse. That it’s not that I’m not bad right now. It’s that I’ve been worse.

Seizures are weird, scary and have almost killed me. I’ve been in 5 medical induced comas due to going into status Epilepticus, (which is seizures that are non stop or seizures that as back to back or the person doesn’t recover between them.)

I’ve had seizures last for 7 and 1/2 hours. So when I do have seizures small ones or big ones I remind myself not only could they be worse but even if they do get worse if I survived seizing for 7 and 1/2 hours I can hopefully survive again.

The way seizures are a totally completely uncontrollable thing. When I have a seizure there is nothing I can do. Seizures have definitely put my faith in God to the test and still testing even today. Learning to be not in control is hard.

But I’m not in control of everything no one is. I can only control my reactions to it. My reaction should be the rely on The Lord but I fail. I fail in all kinds of ways, everyday, every hour and down to the minutes sometimes seconds.

It’s my reactions to even failing to rely on the Lord. How I react to the failure of relying on God should be to rely on Him even more. Learning the that is hard. But I’m thankful for the very fact that the Lord doesn’t give up on his children!

For I am to rely on the only One who controls everything! The Lord God all mighty is who I put my trust, my faith, my love, my everything.

When you fail God is always going to be There to help. Let Him Help. He loves you. and it’s amazing..

If the Lord wants to seize my days away then I will give my trust faith my everything to Him. He can seize my days everyday. He is my everything.

Shayweasel is amazed by the everlasting God!

Unbelievably believable

In April I had a Hickman central line placed. During the placement my vein twisted in on its self taking my Hickman line with it so they had to pull it out and try again.

When they started trying again they had to cut through scar tissue from where I had a port central line years ago while they cut through it my lung was closer then it should have been due to having EDS (lack of collagen.) and the punctured my lung.

My lung then collapsed and I had to be intubation. They fixed it and it was ok! My lung hurt for a few days but it was ok. My Hickman central line was working great! Till it wasn’t..

I started having trouble with blood return at the middle of May. I had trouble in the past with my lines having weird issues with blood return just because of the way my body reacts to weird things.

I had a dye study done which basically is they push dye though the line as I sit under an x Ray so they can see where the line is.

The line wasn’t as deep in my vein as they wanted. And as it was when they placed it. My surgeon was out of town and another surgeon told me it looked good and not to worry. So that’s what I did. But the infusion center I go to every Friday to have my dressing on my line was not ok with the no blood return because in most hospital settings you have to have blood return in order for them to use your central line. And they use my Hickman line for me to get iron and blood transfusions

So I went to the surgeon that had put in the central line when he came back in town. He was worried because the Hickman wasn’t in my vein anymore. So within 24 hours of seeing him I was having surgery to have the one that wasn’t in my vein removed and a new one placed.

Why was he worried so much? Because when I took my medicines I wasn’t pushing them into my heart and veins I was pushing them into my chest cavity. In other words I wasn’t safe using it.

The second Hickman placement went way better then the first. One of the main reasons is because I had a lot of the same doctors nurses anesthesiologist etc.. as I did the first time.

Normally once doctors meet me deal with what my body does and then sees in person what my body can do the weird the odd and the most strange.. things it can do they have a way better and nicer and funnier way they handle it!

They sometimes have to see it to believe it! It’s been proven over the years that you have to see it to believe it! Cuz other wise it’s understandably unbelievable!

Shayweasel is unbelievable!!

Joy of Northing

I grew up in the beautiful world allowed me to see. I saw joy in moving, walking, talking, being there, watching others, being funny, family, friends, my old lady friends, my tiny human friends, and the world around me was great!

I found ways to entertain myself when I didn’t have friends around. I found ways to be weird creative funny and sweet! Strange.

I wasn’t bored. And I tried my best to never feel like I was bored. I learned in the power of encouragement you can make someone else have a better day!

I learned that people love to talk about themselves! And I learned to ask questions always. Never having a moment that I couldn’t think of a question.

I learned that being silly can brighten someone’s day.

I learned to believe in other people!

I learned how to make someone laugh cry or happy or just being with them. Sitting quietly isn’t something I’m good at but I learned to be able to do it for others.

I learned about as many different subjects as I could. So I could always have something to talk about with others.

I learned about doing things I enjoyed. Weather it was standing in the living room hula hooping while doing origami while watching tv. Or jump rope.

I learned to entertain others even during nothing. I didn’t have to talk I didn’t have to always try and do what I wanted.

I learned to be joyful while doing nothing.

I don’t get mad when no one talks to me. Or at least I tried not too.

I learned to encourage everyone even while they did “nothing”

I learned to entertain myself.

The joy of nothing is strange you need to learn that it’s hard to learn that even when you are feeling lonely

even when you feel like your life is nothing worth saving.

Even when you feel like you are nothing.

Even when you feel like your opinion is nothing anyone wants to hear.

Even when you are embarrassed! Scary! Hopeful! Humorous!

You are never doing nothing. You are never truly bored. When you learn to be joyful in everything even when it’s very hard.

I’m never alone because the Lord is with me! I’m never bored for the same reason. Because God is with me.

Shayweasel is joyful..

Unwanted Attention Hog

I have been known to walk into a room and everyone oddly notice and not notice all at once.

Growing up I got all kinds of attention I was cute funny sassy and adorable of course! But those aren’t the things I got the most attention about.

I got attention for not being able to read till I was 12.

I got attention for getting pneumonia a few times a year and every winter.

I got attention for not being able to breath after running around outside.

I got attention for not understanding social skills. Like never being sure when it was ok to talk, when it was ok to hug or whatnot to do when you walk in a room full of people.

I got attention for falling down while playing sports because my joints would pop out of place.

I got attention for being uncomfortable in Sunday school because I couldn’t read out loud.

I got attention for being scared of not knowing where people where at.

I got attention for not knowing what to do during Girl Scouts. And not being able to cut things with scissors.

I got attention for being dyslexic.

I got attention for being sick.

I got attention for being autistic.

I got attention for almost dying.

I got attention for almost getting hit by cars in parking lots.

I got attention for being unaware of dangers around me.

I got attention for being to trust worthy.

I wanted attention for painting well.

I wanted attention for being silly.

I wanted attention for being kind.

I wanted attention for doing the right thing.

I wanted attention for what I was good at. Like storytelling! And being good with animals and being a good friend and loving people and having a heart for people! And I wanted attention for being good at sports and that was never gonna happen because I am not good at sports.

What I’m trying to make you understand is that when someone is getting attention from family members or parents or teachers or whoever. And it’s attention of things out of there control like autism or diseases or learning disabilities, that you need to remember they are getting attention in ways they never asked for and honestly it’s not attention it’s help.

It’s help.

People who have differences or disabilities or whatever they are getting more help then others not because they want to. But because they can’t do it by themselves. They are disabled.

They don’t get to live your life they live theirs in bodies or minds that they don’t have control over. They didn’t want this kind of attention. It sucks.

Now may not everyone feels the same way which is perfectly normal! But this is how I feel.

I feel bad about the attention i took away from people. From my siblings. From my parents. From my friends. From the church.

I got attention when I was having a seizure during church. I didn’t want that.

I got attention because I have a feeding tube connected to me and have my backpack on and people notice.

I got attention being allergic to things and having to explain it.

I feel guilty. I didn’t want this attention but I did get the attention.

I was able to get more “attention” more “help” because I was unable to do it on my own.

I wasn’t being an attention hog I was unwanted attention hog.

when I was alone but because I was able to have helpers I got to be a helped hog.

Shayweasel is apparently a hog today….

Rarely There

The worst part of having a rare disease or any disease is the fact that you have limits. We all have limits but sometimes the the limits I have are normal day to day things for others. Like going to church. Going to the store. Seeing people. Talking to people. Cleaning. Spending time with others. And much much more.

And you get left out. Alone. Because you can’t be there. You can’t do things. You are rarely there, you are rarely here.

You want to be there you want to go to church the store just be around people. Be normal. Persay. But you can’t be. Because your body can’t do it. Can’t do much. Can’t be normal persay.

I’m not normal. But what is normal you may ask? Normal some say is boring. And it seems boring to me. But it also seems almost safe.

As I walked out of church I was so close to the car almost there. I had a headache for the past few hours and I knew I felt off. I had used my magnet for my VNS a few times. I don’t like having seizures around people. I feel guilty. I scare people.

Normally people don’t know what to say. Don’t know what to do. And they have a right to be scared of the seizure. I get it.

when you can’t hang out because you are vomiting. Or seizing or both. You feel as if people can’t relay on you because you never know how you will feel that day. You don’t have enough energy to spend two days in a roll going somewhere like the store, or church.

I use to be someone who never canceled plans because I felt bad when others did it to me. But I had to learn how to say no. How to cancel.

I use to be always there. Then I was rarely there. Now I’m somewhere in the middle… I hope I can stay that way…. because now I’m here..

Shayweasel is here

The Guilt of Awareness

As the coming week is rare diseases awareness week, I sat down to write a blog post about it. And it was hard.

I enjoy spending awareness. I enjoy the simplest ways to help people understand not just me but others who live their life’s with diseases and illnesses.

I feel guilty for spending awareness because I feel like I’m talking about my diseases to much. I’m making it all about me and my diseases. Like that’s the only way I see myself. And others see me as.

I want people to see me for who I am as a weird human and friend, a child of God. Someone who loves her nieces and nephew a lot. Who has watched future man on Hulu through three times in a few weeks who rewatches movies and tv shows and reads writes, writes books, Who doesn’t like being in a room of more then 15 people but does it on a regular basis, who talks way to much after you get to know me, someone who crochets and knits and sews and paints and takes photos, who is sarcastic and funny, or who tells weird stories and laughs. Who smiles.

But I am all of those things but I’m also not well. I am dying. Slowly like all of us are.

And my daily life is overwhelmingly effected by my diseases. I can try and say they aren’t a big deal. To try and forget them. But when I forget that could kill me. If I try and forget that’s when mistakes are made. That’s how you miss medicines, or feedings or eat something Your allergic to. That’s when I have seizures because I looked at the police car with flashing lights as we pass it on the road. That’s when I fall down because I didn’t remember to pick up my left food like I should have, And so on…

It’s unforgettable but it’s unforgivable when you try to forget.

I want to know when is Awareness seem like attention seeking? When does Awareness seem like a plea for pity? When does Awareness become who you are? When does your Awareness become so guilty of all the things I asked above?

I don’t want pity. I don’t want attention. I don’t want people to only see my diseases.

I can sit somewhere talking to someone for ten minutes and afterwards and during I try hard to not talk about my diseases too much. Not talk about me too much and honestly not talk to much. I don’t want them to see me that way. I feel guilty when I do talk about them to much or just talk to much.

I’m wanting to say sorry for talking so much about me or my diseases, I want to say that I’m sorry for being sick and making things about me or making them uncomfortable

But my diseases have altered my life always. They effect everything.

Without them I wouldn’t watch tv shows through dozens of times.

Without them I wouldn’t have met some of my best friends and maybe just maybe I would have met a few of them but our friendship wouldn’t be one of understandings like they are.

Without them I wouldn’t be living in Beaufort North Carolina.

Without them I wouldn’t have been able to be as big of a movie buff.

Without them I wouldn’t want to help people understand other people better in ways that I could truly relate too.

Without them I wouldn’t be the same Shayweasel I am today.

Without them I wouldn’t have a small Noodle Doodle the Tiny Poodle.

Without them this joy I have. This beautifully odd happiness I find in the smallest things that I find there because of the struggles of life have showed me how to love the little things. Wouldn’t be the same.

I have guilt of Awareness because I want people to be aware of all the other things I am. And all the diseases that effect my life.

I am guilty of being aware of rare diseases.

And I’m not sorry. But I do apologize for the weight you might feel when reading about awarenesses of Rare diseases, or cancers, or mental health, or addictions, or whatever it might be that the awareness days weeks months that we have so many of. Because the weight the reality the harshness is heavy.

I’m aware I might talk to much about myself and rare diseases. But ask me about other things. Try and understand how I live with rare diseases that effect everyone. That I’m more then someone who has rare diseases. That I want to be aware of you. Of all the things that make you. I’ll listen and I’ll be aware.

I have guilt of Awareness. But I’m learning to not to feel guilty about it. But not to much about it.

But I still am always open for any questions, any time any day! I don’t mind ever being asked about my health. About my life.

Shayweasels biggest thing she is guilty of is being sarcastically honest and speaking my mind and being more beautifully fantastically then most also that makes me totally humble right?

(Sarcasm goes here.)

Shayweas our!