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

Best fast paced Underrated Movies

I love movies! I am a self proclaimed movie buff and am proud of it! Here is a list of my favorite or best fast paced underrated movies

1. The Crazies

Why I love it is because it starts off fast it’s oddly original and if this happened in real life it would be so horrifying which is just what they are going for.

2. Kidnap

Why I love it is the movie is fast through all of it! There isn’t a lot of back and fourth going over your plan stuff. It’s a great way of making it too and the fact that the main stars are like five people makes it even better because you feel like your in the car trying to get your son back.

3. Cellar

Why I love it the movie like the other two is fast pace, fast talking, quick thinking, roll coaster of amazement! It shows humans at there best and worst.

4. Stay alive.

Why I love it is it’s fast pace it’s funny it has a good story line, the video game is amazing in so many weird ways I love the history part of it and that you feel like you know each person in it well. And again it’s so funny.

Here are four and there are dozen more! Let me know what you guys think in the comments! I love movies and I’ll keep watching them!

Shayweaseling it

7 Reasons Getting Rare Diseases Are Hard To diagnose

I know for some people who haven’t had to deal with rare diseases might not know is why it takes so long sometimes to get a doctor to diagnosed so here is 7 reasons to help others understand. And rare diseases people to relate to.

1. Doctors rarely remember the 1 of 7,000 rare diseases they learned for nine minutes or less in medical school.

2. The main symptoms of a lot of rare diseases can manifest in different ways for each case of the diseases. One person can have FOP (rare bone disease that my best friend Jazzy has here’s her blog to learn more Jazzy blog ) and turned in toes a birth at birth , while another might not.

3. Rare diseases can have the same symptoms as some more common diseases, but they aren’t caused by the same things.

4. Misdiagnoses can cause damage to a rare disease if the treatment or the seriousness of the disease is lacking or harmful it can kill people.

5. Rare diseases have different kinds of most of rare diseases.

6. Their isn’t always a test for the disease and sometimes is that it’s nothing else so it’s this disease, and sometimes the test isn’t done in the hospital or Drs offices close to you.

7. Rare diseases have short time limits on some making diagnosing them before death hard.

The thing about rare diseases is that the rare part effects every part of it. The rare and unknown May never be known. And coming from someone who has been slowly learning more diseases it takes forever to find out what’s wrong sometimes and sometimes when you find out you wish you wouldn’t have.. but sometimes finding out no matter the cost is the most important thing and if you give up you might miss out… on life.. on living.. on being alive. So don’t give up. Fight. And keep trying till you find a doctor who will find out what’s wrong a doctor who will help you after you find out and a doctor who will keep helping you stay alive no matter the cost for the doctor find happiness but keep Joy close..

It is worth it…

Shayweasel knows some of my rare diagnoses because shayweasel didn’t stop