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!

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