Navigating Disability & Drugged Recovery

Navigating Disability & Drugged Recovery

Hi everyone!

It has been so long! I have missed y’all! I was thinking ,just now, how navigating the tricky waters of applying for disability is so tough! You walk this fine line and have to be really careful about the things you do. They look into your life with a microscope and a fine tooth comb. Mostly your finances and medical records but still!

Now that I have that out there. Let’s talk surgery and recovery. I just had a ligament replaced in my ankle, some extra bone shaved down and some extra tissue that was holding two bones together that shouldn’t be held together removed.

I am used to being on different medications and such for the different conditions I have but surgery just complicates all of that! Not only do I have my normal medications but for post op I have 2 antibiotics, pain medication, regular Tylenol and Advil.

That may not seem like too big of a deal for someone who has normal stomach function but for me? Oh dear Lord! Antibiotics do not do well in my snail like digestive tract and they just sit there. Which could be REALLY bad.

Side Note/Soap Box Moment:

You know when you give a doctor or someone a head’s up about something that you know works really well a certain way but they go ahead with their plan? Like when you drop your child at day care and you tell the person that your child will not eat if the food is touching and they just give you the kind smile and tell you something like “Okay, thanks for letting us know. We will get it all worked out.” Then little Johnny gets ready for lunch and his food is touching and he throws a tantrum and doesn’t eat. (Mom has to choose her battles. Food touching is not one of them.) The day care just learned the hard way instead of listening to mom. I feel like that in doctor’s appointments sometimes.

I had a mom tell me when I was watching her son that he likes to be cuddled to fall asleep. I said something like “Okay, thanks for the tip. When is his nap time?” Nap time went smooth as butter because I listened to mom and cuddled that sweet infant boy until he went to sleep.

Now why couldn’t doctor’s take into account that their patient may have some idea of what they are talking about? Especially when you know they are crazy aware of every millimeter of their body. The doctor knows that you have a chronic illness or illnesses. We spend enough time in doctor’s offices. We may not have our M.D. but we have a lot of knowledge from trial and error and just experience with the way our body accepts or rejects things.  Cuddle that infant until he goes to sleep Doc!

And back to our regularly scheduled blog post….

It got so bad that I stopped the antibiotics for now. I wasn’t eating and my feeds were making me nauseated. Finding a solution to that is not going to be easy. I have a call into my doctor, as you may know, these things always manage to happen on a weekend. So, I do what I have learned to do and become mediocre at…. wait.

The pain meds make me really dizzy which makes it difficult to focus or even finish a sentence.

Brain fog that is drug induced is the real deal y’all. You can ask Russell. Conversations take a little while. I deal with brain fog on a regular basis but this is a new level. Fortunately, I am able to take less and less of this medication as I recover and heal.

Pain medications slow down the gastrointestinal tract in anybody. Now imagine what it does for someone with Gastroparesis.

Anyway, that is my post for today!

Until next time my friends!

 

 

 

 

Recovery… ugh!!!

Recovery… ugh!!!

I am bored out of my mind! Sure there are things to do but I am in bed recovering from ankle/foot surgery. 

I have watched a lot of Netflix. Read a little when my brain wasn’t too foggy from the pain killers. Played my Nintendo Switch. Swiped through Facebook, Twitter, and Instagram about a billion times. Okay, I’m over exaggerating there. 

The point is this sucks! I haven’t been able to focus enough until today to even think about writing a blog post. 

It’s not much but here it is. 

Is there something that I could do laying around? What do you like to do in between sleeping? 

Leave a comment below. 

Until next time my friends! 

Speaking My Mind

Speaking My Mind

Okay. Brace yourselves. 

I just replied to a comment on one of my posts and it got me thinking. Rant time. 

Whatever happened to having manners? Like yes ma’am, no ma’am, please, thank you, et cetra. 

What happened to being able to speak your mind without it being hurtful or offensive or whatever. 

I understand using you manners and speaking to others with kindness. I was taught that growing up. 

WHY DO WE WALK ON EGGSHELLS AROUND EVERYONE?!?!?!?!

“You look great today, Jane!”

“Thank you, but I am feeling horrible.”

“I’m so sorry to hear that Jane let me know if there is anything I can do.”

Right there, polite honesty. No one wants to hear the actual conversation. They want. “Hey” “Hey” “How are you?” (As the person that is asking keeps walking!)

What is that?! We don’t speak to one another anymore. We pull a TLDR (too long didn’t read) on pretty much everything! 

I can promise you (and I won’t be offended) that someone has started reading a blog post of mine and said to themselves. T.L.D.R and moved right along. 

It make take awhile and I may not be an awesome pen pal but I will write you an email. I take my time to do that. I will take the time to read through it all and comprehend what it says. 

I have more friends across the States and probably a couple spread across the world that I have never met in person than I have that I can actually meet for coffee. 

All of my friends take the time to talk to me and I hope I do the same. If I don’t call me out on it. 

I just. GRRRRR!!!  There is this part of me that wants to pull my hair out when people sugar coat things and aren’t honest about how things really are!

There are parts of my life that totally freaking sucks eggs!! 

I have an opinion and I have a voice and those things matter. The important part to remember is everyone else have opinions and voices and the matter too. 

People are entitled to their opinions and feelings because they are theirs. I don’t have to agree. I can choose not to listen but how productive of a world would that be? 

End Rant. 

Pain meds are kicking in/kicking my butt. 

Night night. Sleep tight. 

Until next time my friends! 

Patience is a virtue 

Patience is a virtue 

Hey everyone! 

This is going to be super short! I had ankle surgery Monday morning and I have been on pain meds and sleeping. 

I’m going to try to get back to regular posting soon but I don’t think y’all want posts written in a drugged language that no one understands. 

Much love! Y’all are the best! I’ll be right back! Y’all come back now ya hear?

Haha that’s all my brain can muster. 

Night night. Sleep tight. 

Chrysalis

Chrysalis

So there is this, what should I call it, it’s not really a retreat but it’s the best way I can describe something that no one would understand  unless they have been there.

You may be thinking, what does this have to do with chronic illness and the rest of the world?

The statement “no one would understand unless they have been there” applies to both chronic illness and this Chrysalis event.

This one part of a series of spiritual walks. Chrysalis is geared towards high school students. There is Emmaus which is geared towards adults. There are a few others. There’s a prison ministry that follows the same outline.

Anyway, I am working a Chrysalis flight and it got me thinking. I went to Walk to Emmaus and that experience I cannot describe. I can tell you everything that happens and you would still have a totally different experience than I did.

That’s where Spoonie Meets World connects to Chrysalis or Walk To Emmaus. Someone with Ehlers-Danlos Syndrome or Scleroderma has a totally different experience than I do. We are in the same boat. We have chronic illnesses that rule our lives but my story is not the same as theirs.

People who have asthma. That is chronic. That is something my mom has had her entire life. It will not go away. She has it managed and under control. It is something in her life that she has to monitor and keep controlled.

Is it to the same severity that I have to deal with or others have to deal with? Maybe not. I’m not in her shoes.

My spiritual journey is different than the person sitting next to me.

We know that everyone’s story is different. It breaks my heart that in support groups that are supposed to be healing and somewhere safe the Admins of the group have to remind us to be kind to one another.  That we are all having a hard enough time we don’t need to be attacking each other with negativity.

I know this is kind of a rant and it probably doesn’t read like my normal posts but here is my point.

I can tell you all about my Gastroparesis. You will never understand unless you have been there. In my story. Living my life. In my world.

Another reason for this blog. I want to connect the two worlds. Give them a bridge to walk across. I know many of my followers are Spoonies. I ask you, share this with the people who don’t understand. Show them the bridge. It’s up to them if they want to cross it.

In the meantime, while they decide, give some grace. It is frustrating that they don’t get it. That they will never really understand. Give some grace. Give them the bridge. They may not decide to cross it. Love them through it anyway. It’s just as hard on them. In a different way but it’s hard.

Until next time loves!

Hello? Is Anyone Out There? Can You Hear Me?

Hello? Is Anyone Out There? Can You Hear Me?

This isn’t word for word from the movie Titanic but the idea is there. I kind of feel like there is an entire ship full of people out in the ocean and I am rowing in the little boat asking if anyone is there, if anyone can hear me.

I have my family and a couple of friends but they have lives and they shouldn’t stop living them because I feel alone.

Let’s talk about the fear of creating new friendships. That is a huge thing for me. Why should I try to make new friends when they always have stuff to do and soon enough get tired of me having to bail on plans we made?

That makes for a very lonely world. I will most likely continue rowing in that boat yelling for friendship if I keep this thought process.

Here enters the question of how does someone who feels completely isolated make new friends? Question number two is, how does one keep said friends? There are so many questions that I don’t have the answers to.

I feel like I am learning how to make friends all over again. That was a skill I was taught in Pre-K and Kindergarten and refined over the years of school. Now, I am back to the remedial class of friendship.

It brings great anxiety. I don’t want to put myself out there and set myself up for isolation again. I don’t want to get my hopes up. If I don’t have expectations I won’t get disappointed, right? WRONG!! I am already disappointed. It’s hard feeling alone but I am the only one that can do something about it.

What do you think? Is it that easy to keep yourself from making friends? Or to make friends?

This has been on my mind for a few days now. Do any spoonies have any thoughts on this? Anyone else have thoughts on this? What would you want from a friend with a chronic illness?

Until next time, everyone.

 

Purposeless 

Purposeless 

We went to church today. We went to a different service because one of our old pastors got appointed there. 

I sat in the bathroom for most of that service and not for the reason you’re thinking. I sat there questioning everything I have ever had faith in. Not because of the sermon. Just because the thanking God for all the good blah blah blah part. 

As of late I have zero interest diving into the word or whatever. I really feel pretty whatever about it all. 

I feel as if I have zero purpose since I resigned from my job. I would love to be able to go beg for it back but we all know that isn’t going to happen. I just can’t do it. 

As of late I just want to be alone in my head. Probably the depressive state of bi-polar taking over but I just had a med change so I have to give it a chance. I literally took my first dose today. 

I’m sorry if this post is a downer. I just had to put it out there. 

Sometimes this is more for me than sharing with you. In a way it is a journal. 

Anyway, I hope everyone has a good week. 

Until next time. 

Only Child Syndrome

Only Child Syndrome

I am an only child. Russell is an only child. We butt heads a lot. Not in a bad way but just butt heads. My mom calls it only child syndrome.

Today I am feeling that a bit. I got irritated when Russell came in and asked if he could change a show I was right in the middle of. Normally he is in the other room doing whatever he does on his computer. I just got territorial.

This was my routine. My show. He had taken over my desk and my chair. Mine. Mine. Mine.

Only Child Syndrome.

I think that just boils down to being territorial and jealous. The inability to share.

Honestly, I can share. Sometimes I even enjoy sharing my things. Sometimes. At the root of it all I am an only child.

It’s a great thing. I don’t think I would ever change it if I were given the opportunity.

I don’t really know where to leave this. I am not even sure there is a point that I am trying to get to.

So here it is.

Until next time y’all.