Author Archives: Regina Garvie

Bye Dr. Miller

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This week Belinda had a dentist appointment (no cavities, HOORAY) and then on Wednesday we both had appointments with the internist up in Tulsa. Belinda and I went by ourselves since Ben had work. We had not done this before. I was a little skeeved about taking the turnpike but then we got started late and that was the only option and you know what? It wasn’t that bad. It was actually a pretty nice drive. I wouldn’t let Belinda drive though.

Our internist is a wonderful person and a great doctor who really listens and cares. Her name is Dr. Miller and I found out about her in an Ehlers-Danlos group on facebook. We’ve been to her maybe 3-4 times. Belinda has been there more than me. We went every six months (we did virtual once though). And this was our last visit with her!

She’s such an amazing, awesome doctor that the Mayo clinic wanted her to lead their entire Ehlers-Danlos department in Jacksonville, Florida, and of course she had to take it. She will be able to work with EDS patients every day and will learn so much to help others with connectivity tissue disorders! I’m truly happy for her. But we’re going to miss her terribly.

And then what for us? I know there’s another doctor in Tulsa who works with EDS patients but I have read that his staff is hard for some people to work with. As a neurodivergent person, just considering that makes me extremely nervous. Then she remembered we live by OKC and asked if Dallas was too far to go. I said probably not, I mean, it’s two hours to Tulsa or three to Dallas, and she said that that’s where we need to go and she gave me some names to research.

I’ll also need to find out if my and Belinda’s insurance will be okay with us going out of state. There’s always a catch!

Anyway. I wish her the best of luck and I’m so glad we found her when we did so we could learn from her as we were starting out on this Ehlers-Danlos/POTS/MCAS roller coaster! Her influence will be lasting on us for many years to come.

Dance and dorms

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Sarah’s dance recital was on Saturday and she did such a good job! We were all really proud of her. She was right on the beat the whole time, and she didn’t look off stage at the teacher. Girl has got a great sense of rhythm.

The next day we all piled in the car at like 6 am (not Mom, we got help) to get Belinda moved out of the dorms. That look a long time and it was raining some of the time. One thing we had to do was move the medical bed out of the dorm and that was a project. Luckily I remembered her grandparents still had a storage unit in Alva, and they said they did have enough room to store her twin bed for the summer. I am so glad we didn’t have to bring that home! We would have had to take the truck too, and then it would have gotten rained on. Or we would have had to borrow a trailer. After that, we had to pack all her stuff up because she hadn’t packed very much. I got boxes and tape and paper from Walmart and we boxed it all up and got her moved out just at the deadline!

We stopped at Chili’s in Enid on the way back and I got treated to dinner for Mother’s Day. That was very nice and I keep smiling about it.

It’s been good having her home. Her stuff is everywhere and it’s about to drive me crazy.

Today Sarah’s going to go for her food aversion therapy session. I’m very interested to see what that is going to be like.

Busy, fun days

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This week was Bennett’s birthday. I was worried I would not see Bennett on his birthday because he and Mia had plans with friends, but they made it happen. I was very glad! I will be sad some day when I don’t get to be with my babies on their birthday, and you know it will happen at some point.

The next day was Sarah’s art show at the school and she had some great pieces in the show. I posted them on facebook and they got a lot of compliments.

Then yesterday we went to Ben’s work’s Family Fun Day at Orr Farms. Belinda didn’t come home from college and Sarah didn’t want to go. Sad. But Ben and I went, and Lenora and Ben R, and Bennett and Mia, and Ben R’s family too, and that was fun. We took a ton of photos and we had lunch there and Ben won a soft sided cooler.

Orr Farms is set up mostly for small people, but even though we were big people we had a good time. I got a strawberry lemonade and I could taste it a little!

Still going

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I continued to write every day in Alva and that felt great! I wrote at the public library, at the college library, in Belinda’s dorm room, and just sitting in the van.

I’m a little nervous about continuing when I get back home, where all the things that pull me away await.

I WROTE!

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I WROTE!

I wrote, I wrote, I wrote, I wrote, I WROTE!

And not just writing, I wrote in THE NOVEL!

I wrote the scene that has been PLAGUING me in the novel!

I finished the chapter!

I was only 746 words but HEY SEVEN HUNDRED AND FORTY-SIX NEW WORDS! And I love them!

I have been with Belinda in Alva the past five days. I went straight from the writing conference in Tulsa to being in Alva helping Belinda through some emotional difficulties. I kept thinking about how I needed to take advantage of this opportunity, so I read all the former pages, thought about what I was trying to do with this scene and why it was so hard, worked on some backstory and then I JUST WROTE IT!

Wow, I feel like I could conquer the world!

General thoughts

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I have been having a more difficult time as of late. It is interesting to see that, after so much time feeling very collected and peaceful, I have finally hit a snag.

Mom is getting worse. The dementia has reached a level that is very hard for me to handle. I am not sure how to make this work and keep my peace and my own sanity. The stress of it is making me less patient with others as well. Today Mom was asking me questions and Sarah was also upset with me about something and it was just so much that I started wrenching the lid on the jar of peanuts I was holding. I felt like I needed to hit myself to stop the energy dashing all over inside of me and regain control. But I did not, and I’m proud of myself. I am so thankful for Ben, who saw my distress and handled it for me. I fled to the porch and then to the yard, to a chair I have put in a corner where I can hopefully just be alone and rest. I did feel God’s peace and love after a bit, and I was quietly singing It is Well with My Soul, but I still felt that energy zapping inside of me. It is really a struggle to deal with that.

I finally came back inside but I am still by myself. I read some of the book I’m trying to get through, Worlds in Collision by Immanuel Velikowsky. It’s interesting but it is DENSE. I can still feel that energy. it’s not a good energy. It’s a wild energy and it makes me feel dreadful. I probably sound crazy talking about it, but it really is difficult to describe. This is the best I can do right now.

Tomorrow I am going as a chaperone for the school band trip to Dallas. I felt like Sarah would need more support since she doesn’t really have friends in the band. I am not sure what all will be involved but I know it’s not just party time for me; I really have to watch and help, and that will not be easy. When I dropped her off at school today I told her I was looking forward to tomorrow and also dreading it. She said, “Me too,” and that helps some. We are two birds of a feather in a lot of ways.

I opened some windows today because the house felt stuffy and smelly. I’m in a room with an open window now and there is just the loudest frog outside! I went to the window and tried to see it, and then it was very quiet because it’s so close. I stood still and it trilled again and it was so noisy! I am glad it’s so happy out there. I love frogs. Or toads. Whatever they are here. They are wonderful.

I hope Ben remembers to take care of everybody here while I’m gone.

I am also planning to go to the SCBWI Oklahoma-Arkansas spring conference in Tulsa next weekend! I almost didn’t. But I finally realized that I really did want to. So I am.

I am thankful, still. I need to remember that. And I need to pray more!

Stuck food

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Last week Belinda got food stuck in her esophagus. It happens sometimes, but this was a particularly bad one. She’d gotten a hot dog from Sonic (as an 18 year old does sometimes), even though bread can be difficult. So it got stuck. She got some of it out but not the stuck part. And it hurt. It hurt her chest and gave her the feeling like her “ribs are being opened up.” She couldn’t drink water or anything – it all came back up. She called me and we talked through some stuff but nothing worked. She couldn’t study; she couldn’t sleep. She didn’t want to go to the emergency room. I wasn’t sure if she should, anyway, because I don’t think just anyone should be poking around in her esophagus, you know?

She finally got a little rest and the next day it was still stuck. She felt even worse. She ended up missing some classes and I think she did the ones virtually that allowed it. She hates to miss class! I reached out to Children’s National and they wanted her to not go to the emergency room if she could stand it. Later that day she started feeling dizzy and she said she blacked out except for a tiny spot in the center of her vision. Of course, she did not tell me that until the next day, after she had finally gotten it down and gotten to eat again, and things were better.

This morning in church we prayed for her. The pastor prayed for absolute healing, and that she wouldn’t ever have to deal with this again, for the rest of her life. That would be very wonderful.

We are going to schedule a virtual follow up with Children’s National. We are going to do it during Spring Break so she and I can be together for the zoom call.

We also had appointments tomorrow with the Ehlers-Danlos doctor in Tulsa, but we rescheduled those for June, again so it will be during a break. We need to get those on a June-December schedule (they’re six month visits).

I don’t know how to help from here, which is hard. I told her to please try to always eat something that will go down before eating something dicey, like a hot dog. I told her to keep some yogurt or something on hand just in case. The dizzy and blacking out part is so very not okay!

I really want to think of some things I can send with her after spring break that will help. I’m not sure what yet. Hopefully it will come to me.

A small update

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It is surprising that it has been a month and a day since I wrote anything on here last. I have been very busy with medical and other things. Right now I am with Sarah at a dentist appointment, but I wanted to write something because I recently got the Finch app to try to be more productive, and I put “write something” on it and so I must write something. I did write a poem a few days ago, when I was in OKC for my yearly lady appointment.

Upon leaving an appt in the city

It’s fun to pretend to be a real person.
I think this thought as I travel the sidewalk
Like everyone else.
You are a real person, I remind myself.
But it’s okay; I know what I meant.

So anyway, I had the urge and so I wrote that. Because the thought was interesting to me.

I got a 2500 grant for ACT I this month and that’s the first one I’ve done. It felt really good to help in that way.

Cleaning

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Ben is at work today and I cleaned house all morning. It seems that I don’t mind cleaning. What I do mind is people lounging around the house while I am cleaning.

Mom doesn’t count!

Now it’s time to get a lot of busywork done. I have a lot of newspaper and health things that I have been putting off and that’s what’s next. I want to read the next Dungeon Crawler Carl book (I’m on book 4, The Gate of the Feral Gods) but I shall not. At least I can do one responsible thing first!

A job!

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Ben has a new job. He started on Friday and worked Friday, Saturday, and Sunday. He works from 6 am to 6 pm every day, or close to that, at least. It’s like in Midwest City or thereabouts. It’s not computer related. He’s a machine operator for a business that makes airplane parts. Ben R works there and that’s how he got the job. He could have interviewed there a year ago. But we kept thinking the mainframe job was just around the corner. Or the next corner.

I also wasn’t super excited about this opportunity because it is Aetna insurance. The insurer that doesn’t play nice with SSM Health, which is who almost all my doctors are with. Matter of fact, when Ben started job hunting, I said, “Take any full-time job you can find, but please try to not do anything with Aetna for insurance!” So here we are.

That hasn’t kicked in quite yet, so I am still seeing my regular doctors for now, and basically telling them goodbye. I will not be going to anyone new for a very long time. I’m still holding out hope that I do not have to part way with the entire support system I set up for myself. I can still pay out-of-pocket with my regular doctor at least a couple of times a year – I think that’s around $80 (we had to do this whole thing once before when his old employer had Aetna).

Ben hasn’t gotten paid yet. It is much less than what he made before, and that’s another concern of mine. The benefits we were receiving will stop. There will be cash, yes, but I’m not sure it will handle all of our needs, especially with medical co-pays returning to our lives. And now it feels like it would be weird to go to food pantries. He has a job. We need to make this work. Somehow.

However! I do know who can provide for all of our needs, and that is God! I sometimes forget to keep that at the forefront, especially when I am writing down what’s currently underway in our lives. but I know that He absolutely has this. And we will be completely fine (even though my vision of fine might not the same as God’s!)

We’re okay.

Thank you all for the prayers. Ben is still looking for something that uses more of his mainframe skills, so here’s hoping!

I have been going to Mustang in the mornings after I drop off Sarah at school, spending some time at the gym before going to the library to write. That’s where I am right now. I spent an hour or so on the novel, just trying to set up scaffolding stuff in Scrivener. This is going to be totally different than anything I’ve ever written, and I can’t really just write it down in a linear fashion by the seat of my pants. I absolutely have to have a lot of stuff set up ahead of time to make this thing happen. But when I am at the library with my headphones on, I can finally relax and get some work done on it. At home, I’m always tense, wondering who is going to come up to me and pull me out of my work to ask me to do something for them. And every little thing in the house that needs to be done also beckons to me. But I did this last week and I’ve done it this week, even though today I did not want to! A big key part is having to take Sarah to school. Then I’m already out so it’s not so hard to go to Mustang. I do have to look like less of a frazzled hag when I drop off Sarah though – there’s no going back home or I would just stay there!

I have a lot of things to do at home today. I need to reschedule all my PT appointments. They have been on Fridays, but with Ben working on Fridays I can’t do that anymore. I am very thankful he has been at home to help me with all this hard stuff with Mom and Sarah. I wish I’d been coming to the library and working a lot more in the past, but I suppose what happened in the past is what was supposed to happen. It’s okay. No ragrets, am I right?

So there’s that, and then I need to do DRS paperwork for Sarah and find out what Belinda needs to do for hers. I want her to try to do it herself but I feel I’m going to need to do some research on that before she dives in.

The other thing I need to do is resume scanning important documents. I was doing really well on that, and then the holidays came and it was all too much so I put that project away. I am trying to not only scan our important documents, but also all of Mom’s, and Mom has a LOT. I think that getting all of these scanned and uploaded to Dropbox and on my big hard drive is super important. I just really don’t want to do it!

With Lenora and Ben R no longer in the apartment, I do have some space free. I have been thinking about doing something temporary out there, with just the card table, to work on the scanning project. Separating it from everything else might be a good way to proceed. Everything I do feels so jumbled up in my mind right now. I need to organize my new novel and I need to organize my entire life!

Last thing, I’m reading the Dungeon Crawler Carl series and it is amazing.

This post was all over the place. That’s okay.