The Warrior is a Child

I enjoy answering questions and I don’t mind explaining my diseases and life to people. But the other day I spoke to a group of people. And it didn’t go good.

Ironically as I was telling them about the effects on my body, my brain went into it’s I don’t know what we are doing mode and I couldn’t think and couldn’t figure out what I was saying. it’s like trying to figure out a movie that you haven’t seen before and you come in with ten minutes left. You get what there doing then but have no clue what they did.

Whenever this kind of thing happens, I feel embarrassed and sadden by the reminder that even if I do everything right I still have a damaged brain, still have epilepsy. I still had a stroke.

The emotions I feel afterwards are almost always in someways overwhelmed. I don’t want people to see me as just a sick person. So when this happens that’s what I feel like comes across. But in the same moment I can’t leave my diseases somewhere so yes I’m sick but I’m also really weird movie and tv show buff and reader I also spend more time laughing then anything else.

The way I have learned to deal with these feelings is letting the feels being felt and pray.

God blessed me with a clear brain sometimes but he also blessed me with foggy confusing days. He had control even through I never will.

The Lord has a wonderfully fantastic way of making you feel safe if you let Him.

I also have to remind myself the Devil doesn’t like when someone talks about God or does something good in the name of the Lord. He wants to break you so you never want to do it again.

And part of me wants that. To never speak or never write or never talk anymore. I know that I can’t give into that feeling. The pressure you feel after doing something that fails is hard. But my rewards aren’t on earth.

When I feel this way I go and find a safe place my safe place is the Lord.

When you fail, when you fall down the Lord is there. There is a song by Twila Paris (yes that’s her real name.) that has the lyrics

They don’t know that 
I go running home when I fall down
They don’t know Who picks me 
Up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child.”

That song is one of my moms favorite songs and I have always loved it but I love to hear her sing it more!

I say all this to say failure isn’t always failure. I feel as if I failed or just didn’t do why I meant to do while speaking, but maybe it’s not a failure in Gods eyes.

I know that I go running home when I fall down

I know who picks me up when no one is around.

I drop my sword and cry for just a while because deep inside this armor the warrior is a child.

So with my child like faith I will run to the arms of the Lord.

Shayweasel is picked up by the Lord!

The lyrics to this song –

“Lately I’ve been winning 
Battles left and right
But even winners can get 
Wounded in the fight
People say that I’m amazing
Strong beyond my years
But they don’t see inside of me
I’m hiding all the tears
They don’t know that 
I go running home when I fall down
They don’t know Who picks me 
Up when no one is around
I drop my sword and cry for just a while
‘Cause deep inside this armor
The warrior is a child
Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I’m amazing
Never face retreat
But they don’t see the enemies
That lay me at His feet
They don’t know that I go 
Running home when I fall down
They don’t know Who picks me 
Up when no one is around 
I drop my sword and cry for just a while 
‘Cause deep inside this armor 
The warrior is a child
They don’t know that I go 
Running home when I fall down
They don’t know Who picks me 
Up when no one is around
I drop my sword and look up for a smile 
‘Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child

Better then worse

Instead of looking at the hurt you are in think about what you could use this hurt to make something better.

Better is a weird word to me. Like it’s like a middle word you can be better emotionally then yesterday but you can also be at the same time physically worse. You can have a better day then that day your best friend died. Better is confusing.

It can mean you are ok, it can mean you are horrible, it can mean you are at a loss but that your pushing forward l. It can mean you feel like giving up but that you aren’t gonna be worse. Things could also always get better. And that’s what you do.

Yesterday’s problems didn’t go away overnight. But they also didn’t kill you so maybe that’s better. You woke up today. You breathed.

When people sometimes tell me how much better I’m doing I feel like I need to explain myself. And I shouldn’t have to. I do through.

Because I am doing better but I spend hours a day making sure I stay that way. It’s work to be better for me. Yo stay alive, you have to look at things slightly different. I take medicine that if I forget to take will make me not better anymore. A feeding tube set up to late can make things not better.

If I do to much in one day I’m not gonna be better. If I forget to eat what I can eat I not gonna be better anymore.

Being better takes work and thoughts and that’s a good thing in ways because when the better does happen you love it even more. Because you know better can leave you at any given moment.

I don’t take baths daily so I can stay better. I don’t eat to much so I can stay better. I take my time walking. So I can stay better. I listen to my body so I can stay better. I pray to God so I can stay better. I find joy so I can stay better. I laugh so I can stay better.

Being better doesn’t mean I can go outside on a five mile walk. Being better doesn’t mean I can go and get a job. Being better doesn’t mean I can stop my feeding tube. Being better doesn’t mean I can stop taking IV Benadryl. Being better doesn’t mean that I won’t have a seizure. Being better doesn’t mean I can stop praying to God. Being better doesn’t mean I can stand for more then ten minutes. Being better doesn’t mean I don’t need my VNS.

I’m better because I have a feeding tube a VNS a pic line a wonderful family beautifully fabulous friends! A fantastic church. And an amazing God.

I’m better but I still went to bed at 8 o’clock last night because I went to church and it wore me out. I still wake up in anaphylactic shock. I still get scared.

I might be better but remember what your comparing to the worst days of my body killing me. So yes I’m better. I’m glad I am. But I’m still getting worse but I’m better then I was when I was in a medically induced coma. Because the problems I had then are the same ones now I’m just able to now be controlled better because of all the surgery’s tubes and lines and medicines.

God blessed me with better! God blessed me with worse too! He made my bad days and my good days and I’m grateful that my bad days make my good days feel so much more lovely! I’m grateful I’ve been horrible!! It makes the simple happiness so much more meaningful!!

Shayweasel is better then she was on life support in a medically induced coma!

The adaptive nature of life (with Or without chronic diseases.)

When I first got my inhaler as a child that I had to carry around with me I didn’t like carrying a bag or whatever but got use to it this is a simple explain of the adaptability of chronic diseases.

My central line (long term iv that goes into your heart I have a picc line it’s in my right arm) hangs from my arm I barely think about it being there I do things like move my arm in some ways to make sure it doesn’t catch on things. Without thinking I just do it.

I was 17 when my food allergies got a lot worse and I was told to cut out 9 foods all at once and keep in mind 3 of those where soy wheat and corn which cut out over 90% of processs foods. I learned to live like this. I cut them all out learned recipes and ways to keep my food tasting good and safe for me.

As I learned more and more food allergies I found more and more ways to keep my self safe my food safe! I adapted I had to.

You learn odd things when you have to or it could very well cost you your life if you didn’t.

I learned how to use coconut, rice, oatmeal flours. I slowly even watched my parents become people who didn’t eat foods I had reactions to if I smelled that one was a few years later but you get the point.

When I woke up from my first coma with my left side of my body being so much weaker then my life due to a stroke during the 7 and half hours of seizes. And I had to learn to use my left side. When I walk even now my left foot turns in some. I have to think about each step I take. But nevertheless I adapted to what my body and life was and is.

My friend Jazzy has a hairbrush that her dad made her with pbc pipes and tape so she could brush her hair easily since she can not move her neck or left her arms above her head. She made the world adapt to her. She made things adapt to her.

Moving around a lot as a child helped me adapt a lot. I learned things about how different everyone is about how having a small bedroom that I shared with my sisters wasn’t a big deal I learned a lot.

I adapted to the churches style of worship. The chronic illnesses that come up in. Life have to be able to make you adapt not adapt the diseases to you but you adapt to the diseases. If that means learning to make your feed and watchtower and find hobbies that make you sit down so you don’t make yourself sick then so be it. That’s how it is. You adapt.

My parents volunteer at a local addiction recovery center here in Beaufort NC the guys that are in the program I see them each learning to adapt to a life without drugs, alcohol or whatever it is that brought them in. I see them adapt to sharing a room with each other sharing a house with each other but the longer they stay in the program each one is more and more becoming more adaptable because the small little things they’ve adapted to have changed them and for some it’s for the better.

The adaptive nature that the Lord brings us to look at all the different ways God knows what we need. God planned our life’s out and instead of wanting God to adapt to our life or lifestyle we need to adapt our life to Gods plan to Gods life.

I don’t think that it’s easy to do so but I beleive if you honor the Lord each adaptation you have to make will become easier and easier. Till you don’t even know you already adapted to it.

When your diagnosed with a disease and told it could kill you. You don’t adapt by going out and hurting yourself or yelling at God because of it no you go and you figure out how to fight it. You adapt to the problems you face.

Adaptive nature of learning to be ok where your at.

To be ok to learning how to do things different.

To be ok learning how to make things easier for you.

To be ok with adapting whatever that might be.

Overall the biggest thing in life you will need learn is life is changing and if you don’t adapt you might not enjoy life as much. Life is always changing. It always will be. Adapting isn’t just accepting how thing are it’s accepting you can adapt and move forward at the same time. Adapt to how good how bad how sad how worried how weak your life is without the Lord.

Adapt because God wants you too. Adapt to the small joy. Adapt to Gods plan. Not Wanting God to adapt to you..

Shayweasel is learning to Adapt..

Aunt “honey!” Helens

A few weeks ago my aunt Helen joined friends and family and above all else God in heaven! Her death wasn’t done naturally she died because a nurse overloaded her with medication. This shouldn’t happen. But it does. More then we know it does. Or just think about.

She was transferred to a long term hospital she had gotten off the ventilator. She still needed to have oxygen and things she was fed through a feeding tube (as I am as well.) she was on dialysis, she was on IV antibiotics that were to remain till she died. I had hoped that death wouldn’t come soon like it did.

On Friday she arrived there. They woke her up to give her medicine to help her relax. And they did it twice. Medicine that she hadn’t been taking much of because it relaxes her to much and she couldn’t breath well enough. Her blood pressure would drop They woke her up again in the morning and gave her more. The nurse had another patient she was taking care of who also passed away. she was taking care of her other patient and she didn’t come to see Helen soon enough.

We all know Stephanie most likely the top favorite but I’m pretty sure she loved adorably hippo Rory! My aunt Helen is the embodiment of what a it looks like to be an aunt! I learned how to be an aunt from her and I love it!!! She gave me old hats she collected when I was younger because I loved them so much! She gave me love weirdness and understanding. She was bossy straightforward and emotionally committed to her nieces and nephews! I am grateful God have me her!

I have lots of memory of my aunt Helen! Of her being funny weird and sarcastic! She was strangely graceful and always looking for trouble! In the best way possible! She woked as a ceo Running companies and fighting for what she believed in. She showed us sign confidence! She showed us how to be spunky. She was and always will be one of my favorite people I’ve ever known.

My aunt Helen was a Godly women! When I was a baby my parents let my aunt Helen and my grandma Rose watched me and my sister Stephie and my brother Sean. She took us to the movies and I cried and didn’t like being in the theater. They had to take me out and couldn’t figure out why I was so upset. They had just weird looks in their eyes. It is one of my first memories. It was with her and my grandma Rose who both didn’t seem mad at me but confused but yet I knew them and I know now that they loved me. My aunt Helen use to tell me she wanted to name Sigourney because she thought it was a cool name and said as I got older that the name would have fit me because Sigourney Wever played Dian Fossey and I loved animals just like Dian did. It was weird way to think about my name but it was a surely aunt Helen way to think about things.

She knew me well. I called her all the time. She was the first person I knew to have a cell phone in 1994ish and I thought it was so cool! She kept the same phone number till last year. She was a wonderful and bossy lady.

She helped me not be scared of tubes and central lines.

About a month ago my aunt helens insurance called to say they wouldn’t be covering her anymore because she wasn’t in Texas anymore. She was in Texas but they said because she had her mail sent to North Carolina that she wasn’t. She hadn’t been out of the hospital. She was in the hospital for over 17 months. She wasn’t even ever out of the state. Then the hospital all the sudden wanted her to leave.

The hospital did love my aunt Helen she knew everybody there. By name. And she knew their stories and stuff and half of the time she was there she wasn’t able to talk due to the tracheostomy. She was able to use the speaking valve. And I did get to hear her talk.

But when her insurance did this she was easy to leave because no one wanted to pay. The thing about insurance is that they do this stuff all the time.

So you can sit around blaming the nurse blaming the insurance. Blaming yourself. Blaming your sisters. Blaming your family. Blaming God. But I promise you it won’t help you to blame people. It will not bring her back.

You can try and get justice for her death. Find who’s at fault. Find what to do. But I know my aunt Helen will not come back.

I will miss her. But she is peaceful. She is playing with my dog beng and Dodie she is riding horses fearlessly.

My mom spent so much time doing anything she could do. She was strong. She is strong.

She flew down to Texas about 15 times in the pasted year alone to help her. My mom is a hero in all ways.

I’m sure Helen is wearing black shiny shoes and is laughing.

…….………

There is a song she wrote to the tune of all about that bass. She wrote it while she was in the hospital while one her speaking valve. The lyrics were about loving your self and loving God not worrying about anything because God will take care of you.

“All about that praying, no worries. I’m all about that pray about that pray no worries…”

She who is good kind who follows the Lord!

Shayweasel missing aunt Helen

What A IV diphenhydramine (Benadryl) Shortage Looks Like

Swollen eyes, face, lips, redness

If you didn’t know IV diphenhydramine or IV Benadryl is on Shortage which means the pharmaceutical companies aren’t making enough or none at all. Some of this pharmaceutical companies say they won’t have any till 2020 which is insane and super scary. For people who like me rely on IV diphenhydramine to survive. Some because the medicines they take like chemo, IVIG, some antibiotics ect… some because like me are allergic to the world around them and even themselves sometimes.

Having this shortage has killed some of my friends and many people. In all kinds of ways. When someone takes a medicine like chemo or IVIG and doesn’t take the diphenhydramine with it. It will cause more and more problems and could kill them. Or if someone comes to the hospital in anaphylactic shock and doesn’t take IV diphenhydramine it could kill them.

Some of the closest friends I have live off having IV diphenhydramine infused into themselves every moment of the day and every day of the week and some have been on this treatment for years and years and stopping it isn’t optional. And for others like myself every few hours we take IV diphenhydramine through central lines to be able to not having allergic reactions every part of the day or going into anaphylaxis every few hours. And so much more problems come up too. Soon you stop being able to breath while. You get infections because you are always having reactions and so much swelling has caused a backup of mucus and Congestion and their is bone pain stomach problems, vomiting so many others. Neuro problems. random high fevers. Flushing skin. seizures.

small skin reaction

I pray that diphenhydramine in the IV/inject form is being made and becomes available soon! Till then I’ll be flushing red and praying for each person who needs it and can’t get enough or any at all.

Shayweasel is itchy

Prayers for MeMe (my mom Sherri)

My mom She went to the hospital last Wednesday because she was having chest pains the dr admitted her because the dr wanted a echo done. On Thursday my moms iv started to hurt but they said it was fine. After waiting all day Thursday and Friday they still hadn’t done the echo yet. Saturday morning they finally did the echo and the dr was busy so he discharged her without coming to see her. When the nurse took out the iv in my moms arm her arm started to hurt a lot. She asked the nurse about it and the nurse said it happens. My mom came home and was very tired and went and took a nap when she woke up barely a few hours later she had nausea a fever and her arm was swollen and very high her fever got to 103+ and we took her back to the hospital. The hospital hasn’t been fast acting on getting the infection under control. As of now My mom has MSSA which is a type of infection she will have to be on iv antiobiotiics for two weeks so we will be staying in Florida for two more weeks at least.. my mom does not have insurance even through she works for the government as she is my paid caretaker. Please pray we can get the infection under control. That the hospital will take responsibility of their wrong actions and financial responsibility. And please pray that my mom would break her fever and she wouldn’t be in to much pain! She is smiling as always and thinking more about others then herself. She truly is one of the most selfless humans alive.

Shayweasel praying

God set it up – Seaboard, NC

Every now and then when I look back on my life I get fully freaked out how much God step up my life. How this and this happened s o I could do this and this and so on. I see where the bad choices I made that God used them for the good. It’s amazing and totally creepy and mind blowing.

I moved to a boring seeming town of a seaboard you can’t get the sea but you can get the bored…..

I was 13 when we moved my papa was pastoring the church and for the first time he had more time to hang out with us and do stuff as he had been working a few jobs at a time most of my life. When we moved there he didn’t have to work another job but pastoring is more then a job.

But anyway my papa started taking me every now and then to visit people in the hospital, nursing homes, Home bond people. I enjoyed being with him and visiting people.

The town was small and I loved to ride my bike and would go and sit on the front porch with the elderly people from the church and basically it’s easy to know all 700 people in a small town in the edge of no where, I would sit and talk and talk.

When I was 15/16 my sisters Sam and Vana moved out of the house to go to college and all the sudden it was just me and my parents. I went to almost all the hospitals and nurses homes with either my mom or papa, and talked to everyone it helped me learn to talk better to people. It helped me never be scared of the hospitals something I had never really had a problem with before.

But mainly I learned how to handle boredom and how to handle having no one else my age. I learned a lot. And God set it up.

But the Down fall of this all was I loved all this people but I had to watch so many die. I cried a lot. But it helped me. I went to over 200 funerals in the course of 6 years I lived there. I watched my friends died it didn’t matter that they were 70, 80, and 90s years old but they were a blessing to me. My teen years were spent in the best place for me.

God knew how bad I am with teenagers. I’ve never understood them. And didn’t want to be that way ever. I was never fully like that but I did things wrong after we moved. I cry thinking about it now but that’s beside the point.

How does this help me now days?

Well I don’t mind watching tv all day. I don’t mind going to the hospital to visit people (not as much for my self) or having to wait for hours because I can find ways to deal with boredom from reading, writing watching TV movies talking to strangers learning new ways to think making up or writing books and stories.

I learned to handle death well. And sickness. I’m better in scary or life threading moments. I’m good at calming others down. Now calming down myself is different I learned to put my emotions aside and think of others more.

Now that’s one explanation but there are so many more ways God set up my life. I’ll tell you more later! Today through that’s it.

I’m not perfect or awesomely good. But God is still working on me. And I can wait to see what he does next.. because God really likes to freak our family out..

Thanks for being you and reading this!

Shayweasel being set up