Author Archives: Regina Garvie

The morning after

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Belinda doesn’t feel well this morning. Her chest and her throat hurt. This didn’t happen after the last time, so I wonder if she might be coming down with something. She might have also slipped off her incline in the night, which would make stomach acid come into her throat. It’s difficult for her to sleep on an incline in a hotel. We tried to put pillows under the head of our mattress, but it’s a king size and it was too much for us, so we just put a lot of pillows under her head.

We were supposed to go meet Sen. Markwayne Mullin this morning but we canceled that and instead are just hanging around in the hotel. I’ve been working on the programs for the show at the theater this weekend. She just woke up (it’s almost 11) but hasn’t made any moves to get up yet.

Our dear kitty Nutmeg passed away in the night. Ben gave us the sad news this morning. Nutmeg was pretty old and had been having some health issues so at least she is at peace now. She was a wonderful kitty, and I would say the smartest cat I have ever known.

A peach and gray calico cat wearing a paper crown.

Nutmeg in her heyday.

Washington DC

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Yesterday Belinda and I flew into Washington DC and today we went to Children’s National for her procedure. It was an endoscopy with possible dilation (they did that). We are here because she still goes to the pediatric surgeons that performed the POEM procedure for her achalasia.

So yesterday we got to the room and didn’t want to do anything. After a while we bundled up and walked to Domino’s and got pizza. Belinda did not wear gloves and her hands were so cold! I considered giving her mine and then I did not.

Beautiful view from our hotel room

This morning we called an uber and got to the hospital early. We went to see the chapel and the Healing Garden, which were underwhelming. But I’m glad I saw them because I had wanted to see them for a long time. There is allegedly something on the roof as well, but I wasn’t brave enough to try to find that.

We were in the waiting room for a really long time. I wrote a poem that didn’t rhyme, after an abandoned yellow crayon under a chair piqued my interest.

Waiting

Anyway, I made a bunch of notes of the day, mostly so I can keep the facts straight and remember which doctors and nurses worked on her (which came in very handy today with the phlebotomist).

Belinda told Dr. Kane that she had no symptoms and every thing was good and I told her to really tell him, and then she talked about how things were getting stuck sometimes and how she was having spasms. He told her that stress can make achalasia worse. So when she was unable to swallow in the cafeteria at school, that made her have to regurgitate, which made her even more anxious the next time. I am very thankful the school released her from the meal plan. I cook and freeze meals for her, and she makes herself an egg for breakfast every day.

Anyway. The nurse came and talked and talked. She was very nice but it was a long chat! We were both getting tired. Then the anesthesiologist came in, and he checked out Belinda’s veins and then she said not my hands, please, and he said what about your foot and she said sure and I DIED but he got it onthe first try and Belinda wasn’t even bothered. I felt nauseated but made it.

Shot in the foot time

Dr. Petrosyan came by to say hi. He and Dr. Kane are both her surgeons, and they performed the POEM together. Her last scope and dilation was also with them. Today Dr. Petrosyan was the surgeon who was doing all the emergency surgeries. We talked about languages a little with him. He knows Armenian, Russian, and English. He’s very smart!

So it took a bit longer because the consent form didn’t include the dilation, and so the nurse couldn’t let her go to the OR until that was fixed. So Dr. Kane fixed it, Belinda signed it. She was glad to get to sign it twice because she got her digital signature to look better the second time.

Dr. Kane said everything looked great and the dilation they did was very small, but they of course did it while they were in there. It looks like it went from 9.4 mm at the narrowest point to 12.0 mm. So that will be nice for her.

We got an uber back to the room and I had thought we might go to the Botanical Gardens this evening but she just wanted to order food and rest. So we got fettuccine and had it delivered. I’ve never done that before and the cost was horrible. Too cold to walk tonight though, and getting an uber would have been more expensive.

Tomorrow we are supposed to meet a senator in the morning. Then the art museum or library of congress or natural history. I’m letting her lead.

Catch-up

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Well I got very behind on my December journaling. But now Belinda has had her procedure, we are up on the ninth floor of the Washington Plaza Hotel, and I thought I could at least attempt to do this thing again. My last day to do the journaling calendar was Dec. 10 and now it’s Dec. 16, which honestly isn’t as bad as I thought it was. So.

Day 11: List as many places you went as you can think of, no matter how close or far.

I actually went quite a few places this year. Thinking, however is generally more difficult. I remember going to Branson with Krislyn, Karlene, and Belinda because Krislyn was invited to come dance there. That was very cool. Most of the family went to Milburn to have a remembrance service for Sarah’s stepmom. And Karlene and I went to several away football games to support Sarah in the band. Then to Alva several times, and now Belinda and I are in Washington DC. I’m going to go back and look at my facebook and see what I forgot.

A fire truck is going through traffic circle that our room overlooks and it was so loud that I got up and looked!

Anyway, back to the travels. In January, it wasn’t really a trip but I did go to Yukon several times as Bennett got married to Mia. It wasn’t a trip but it was so very important!

In March we went to Roman Nose State Park in Watonga and hiked and geocached. It was just one day during spring break but was horrible and also fun.

Alva in April. Krislyn and I also walked 10.4 miles in one day on the OKC trails. That definitely counts as somewhere I went.

We went to Lindsay quite a bit, which felt like traveling because it was a long way. Belinda’s co-op met there and I might have opted out if it hadn’t been senior year. I’m glad we did it! I love all those people. Also, I got to visit that non-grocery-store-Walmart and that was nice and nostalgic.

June was when we went to Branson! We also went to see David at Sight and Sound Theatre and played dinosaur mini golf. It was an extremely good time.

Ben and Belinda and I went to Gatlinburg, Tenn. in June for Belinda’s last dance nationals. It was difficult and we used credit cards to make it happen, but I couldn’t bear to not let Belinda do her last year of competition. We did make a lot of good memories. We walked a lot, went to Ripley’s Believe it or Not and the Ripley Aquarium, played mini golf, visited the Great Smoky Mountains State Park, went to the Gatlinburg library, and did other fun stuff along with dancing. That was a really good time. I never posted on facebook about it because I was waiting for the professional pics and when they came I still didn’t get around to doing it. Maybe I’ll make a post soon about it. I really should.

We were back in Alva a few times in August, to get Belinda’s adjustable bed moved in properly and also to drop her off at the dorms.

Karlene and I started going to away games for football in September. We went to Noble and ate at Kendall’s for the first time. We also went to Deer Creek and Yukon to watch band competitions and we went to Alva again, for Family Day.

October was Milburn, and we also went to band competitions in Edmond and Elgin. Karlene and I went to football games in Tecumseh and also Madill (we stayed the night there at a weird motel). Homecoming at Alva was also in October. We came in second in the medallion hunt!

And now it’s December and Belinda and I are in DC. We are here for two more nights and we are happy to be here but also really want to be at home.

So that was very very long to be part one of FIVE in a catch-up post. And I also wanted to write about how the procedure went today. Maybe I’ll just do one more.

Day Twelve: Milestones, traditions, and events you celebrated.

Bennett and Mia got married.
Belinda graduated from high school.
Belinda started college.
Lenora and Ben had their one-year anniversary.
Sarah came to live with us!
We celebrated Easter and Thanksgiving and Christmas, and I’m sure a few others, as we always tend to do.
And the Tuttle Tigers won state and Karlene and I were there screaming in the stands and freezing our hind ends off! That was cool.

Day Thirteen: People you had dinner with.

Well, that’s odd. Ben. Lenora. Ben R. Bennett. Mia. Belinda. Sarah. Mom. Karlene. Krislyn. Kevin. Gary. Will. I know I ate lunch with Rachel once. We hosted the wedding rehearsal dinner with pizza and big salads, so we did eat with everyone who was in the wedding party. We had Adam over for lunch once. I think the church lunch thing fizzled out sometime in the spring, but before that we had many of the kids’ friends. Those were fun times.

Day Fourteen: Recount the first three memories that come into your head from the year.

Hmm. Branson. Bennett and Mia’s wedding. Belinda going to college.

Day Fifteen: Describe an ordinary day from the year and what about it you enjoyed.

I’m not sure what days I remember that were ordinary. I tend to remember the things that are memorable. And what makes a day extraordinary? One day the kids came over and worked in the yard and I wasn’t there and when I came back the sidewalk was really edged and when the sidewalk is edged it makes me feel super happy. I think about that every time I walk up the sidewalk and I feel very loved.

Day Sixteen: Identify five of your favorite photos from the year on your phone.

That is a lot of photos. I take a lot of photos. I guess I will look at the ones I tagged favorites.

That didn’t take as long as I thought it would.

Tension headaches

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So I guess I’ve been having tension headaches. I have been waking up with a headache for at least a week now, and it fades but doesn’t ever go away. Excedrin migraine doesn’t seem to do anything. So today I consulted chatgpt (I know it’s terrible…I know!) but I can’t seem to find anything else that can help me with Belinda and my medical issues and also any legal and financial type things. I know I have to double check what it says but it’s just like the best search engine ever that is also wiping out the rain forests, UGH.

So now that my AI confession is out of the way…it told me to do several things, including letting my jaw hang and I was all, how do I do that? So it turns out I have been clenching my jaw and I guess the headache came from that after a while. I finally had to support my jaw with my palms and exhale again and again until I felt it dropping. Apparently it should have taken 2-3 breaths to get it to drop but mine held tight until 7 and took two more to fully relax. Now I’ve gotten my earphone sleep mask wrapped under my chin, trying to give my jaw a break.

My Ehlers-Danlos expresses as being very tight and clenched all over. This is because my body is subconsciously trying to hold all my loose joints together. So that makes things worse, I guess.

Anyway, after getting my jaw to unlock like that, my headache faded away to almost nothing.

I had no idea that was a thing, or that my headaches and pressure in my head were related to how I hold my jaw. My jaw is nice now. Kind of when you are in a warm pool of water and you can just relax everything. Ahhhh. The only issue is my brain keeps wanting to tighten it again, so I’m having to consciously stop it and remind it that the strap is doing the work right now.

I feel like an anthropologist studying myself when this kind of thing happens. It’s interesting to see how my health and mental issues trace back to my undiagnosed history.

A moment you felt proud this year and why

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Here we are again, for another day of “December Journaling If You Feel Like You Haven’t Achieved Much This Year.”

A moment you felt proud this year and why.

I can tell you that when I first read this, I thought of something for one of the kids. And then I thought of something for another one. And then I realized I could never write down just one thing that I was proud of the children this year. So I had to do something else.

I guess the thing that was the hardest to accomplish this year has been the huge Sarah birth certificate fiasco. I was very proud to hold that birth certificate in my hand, and very proud to hold Sarah’s driver’ permit in my hand as well!

I don’t know what else. This has been such a year of ups and downs! Anyway…pride goeth before a fall so maybe I should just cool it.

Three things you wouldn’t change about the year, no matter what

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It’s the 10th and I’m backdating again. I remembered when I was in bed last night and I definitely decided to stay right where I was!

So here we go with the Dec. 9 edition of “December Journaling If You Feel Like You Haven’t Achieved Much This Year.”

Three things you wouldn’t change about the year, no matter what.

I firmly believe that things happen for a reason. I think that all things work together for the good of those who love God. I love God so it’s all for my good. Now, my good might not be what I want at the time, but again and again it has proved to have been good for me later. We will not understand everything this side of eternity, but someday. I know that God knows what’s best and I trust Him completely.

So, with that in mind, I can’t really pick three things I wouldn’t change about the year. But I can put three things that I definitely am glad about – I’m thankful for all the time I got to spend with my family this year. I’m thankful for how God has taken care of us again and again during this time of trial. I’m thankful for my home and my bed and my table and the people I get to share life with!

One week to go

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A week from today will be Monday, Dec. 15, and Belinda and I will be traveling to Washington DC again for another follow up procedure. Her pediatric surgeons will be doing an endoscopy and will probably also do some dilation or other tweaks to the surgery, based on what they see in there. That will be on Dec. 16.

I am looking forward to seeing Dr. Kane and Dr. Petrosyan again. They are both so kind and they care so much about their patients. It is amazing to see how committed they are to helping kids with pediatric achalasia! I am glad that even though she is 18 now, she can continue to be their patient for the time being. This is the very best course of action to prevent end-stage achalasia and esophagectomy.

The spellchecker on wordpress has alerted me that esophagectomy may not be a word, but unfortunately it is. Anyway, that is the surgical removal of the esophagus. If things go as we’re hoping and praying, she will never get to that point. Please keep this in your prayers!

The surgery was originally planned for Dec. 17, but they needed to change it because of some kind of work being done on their surgical suites. So instead of us leaving on the 16th, we’ll leave on the 15th. The worst part about that is that we will be missing Sarah’s first band concert, and I really wanted to be there to support her. I’m going to try to facetime, but of course that isn’t the same. I’ve asked the rest of the family to do their best to go, which I think will make up somewhat for me not being there, but she does really want me to be at her activities first and foremost and I want to do that for her! I know she will understand that this couldn’t be fixed, but I hope that she doesn’t have a part of her mind telling her that I chose Belinda over her. It’s difficult because she has had so much loss and disappointments in her life. I just literally got an idea while typing this – maybe the band director would let me sit in class the day before, so I could listen to it live that way! I think he might. I’ll ask him about that (if Sarah wants me to – she also gets embarrassed at being singled out).

So now we have seven days to pack and plan for our absence. I’m always frightened of flying but I know that it’s in God’s hands and I don’t really have control over anything anyway. If it is His will, we will be back home on the 18th, ready for one for weekend of Tuttle Christmas Carol performances and then Christmas!

The people you’ve spent the most time with this year and what you did

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I’m getting more annoyed with these each day. I mean, I’m not mad at them or anything, and I’m going to keep attempting it, but I don’t feel like “December Journaling If You Feel Like You Haven’t Achieved Much This Year” is really giving me amazing insights. Then again, I’m not going to make up a calendar like this for others people to work through, so I shouldn’t be complaining.

The people you’ve spent the most time with this year and what you did.

My family. The end. Ha ha.

No, but, that’s who it is. It interests me that I’m sure the person who wrote out these questions didn’t expect for all the answers to basically revolve around family. It makes me curious as to who that person is and what their life is like.

I spent most of my time with my family. Mostly Ben, Mom, Sarah (in the house peeps), then Belinda (home most weekends and I wish it was more but I know she can’t realistically do that), then Bennett, Mia, Lenora, Ben R, then Karlene, then Krislyn, then Gary and Kevin. I actually probably see Karlene the same or more than my married children. It probably varies.

Outside of the family I’d say it would be my church family, and then…I don’t know. Used to be the SCBWI group, but I don’t get to those things as much as I used to. I do go up to the school and see them somewhat frequently.

But as far as what we did, we just did what families do when they are together. We watch movies, we eat food, we play games like trivial pursuit and bananagrams. We played Bible trivia the last time we did that and it was fun.

The person I spend the most time with is Mom and she is driving me crazy. I bought her a cozy mock turtleneck dickey and first she said it was great, and then she said she was too hot and that she was frightened and was very upset. So I took it off and left her with only a regular mock turtleneck dickey and now she is way too cold and keeps coming back and asking me for the other one, and I’m not going to do it because it will make her too hot again. I gave her a throw to cover up with while she watches TV. It’s hard for me when she interrupts me when I’m working on something and focusing, but it’s even worse when it the same thing back and forth.

I’m looking forward to being with Belinda in the hospital and having a break from being here, honestly.

Anyway, that’s what we do.

The specific places you frequented this year and memories

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I guess I forgot to do “December Journaling If You Feel Like You Haven’t Achieved Much This Year” again yesterday, so I’ll post date this one too. I don’t know what happened – yesterday was busy but not any more than usual, as far as I can remember. Anyway.

The specific places you frequented this year and memories.

Well, I know we went to Alva quite a bit this year. I guess some of those, like the Miss Cinderella pageant for Belinda and the Ranger Preview she went to were actually last year. This year I know we went there several times, but I don’t remember all the details. We went to the administration building to sign some papers at the financial aid office. That might have been during the Spring Showcase, but I didn’t remember that Belinda went to that, since she went to Ranger Preview and it’s basically the same thing twice. We also went to Northwestern when she got her bed installed in her room and then a couple of times to move things. Then we were there for Family Day and for Homecoming, and all of those had nice memories. Family Day had a scavenger hunt that was not like the homecoming one, alas, but we did it anyway and also had Taco Village and went to the little luncheon they had (even though we’d already had TV so we didn’t have room for chicken alfredo). It was still nice visiting. And then for homecoming we got to see the homecoming sign that Belinda did the lettering for, and we also did the big scavenger hunt and came in second by just minutes – but we had a fantastic time doing it! Sarah also got to tour the campus while we were there for Homecoming, and she thinks she might like to go there for college.

We also went to Gatlinburg over the summer, for Belinda’s last dance competition, and that was a really good time. The only thing I didn’t get done was posting photos because I was waiting for the nationals dance photos to post, and so I didn’t get those on fb because time got away from me. And now I’m trying to remember if I ever downloaded the nationals photos! I’ll add that to my to-do list to check on. I thought I would post those for the one year anniversary of the trip.

Same thing with Bennett and Mia’s wedding pics. I was waiting because I wanted to let them post the ones they wanted to post first, so I’d know which ones Mia liked best and could just follow her lead, but again, time got away from me. I am definitely posting those on their one-year anniversary (which again, I need to start planning asap because that is a lot of pics to look at)!

I spent more time than I would have thought at Mia’s family’s church, where the wedding was held. Her family has begun a theatre right at the church, and I’ve gone and seen Bennett and Mia and the rest of the family in several productions. And of course we’ve frequented our church a lot. And Fourth St. Theater.

I have also frequented Walmart but I don’t think I’m going to put any memories of that here, ha ha.

Memories from the year that make you smile, no matter how ordinary

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It’s the first Saturday in December! We are now 10 days out from Belinda’s procedure. Time to think about packing and things like that. I was a little concerned with how to pay for food while we are in DC (I’m working to get insurance to pay a per diem, but that will still be reimbursed after and we don’t really have cash on hand), but I found that my snap card will work there, so that’s a relief. We can at least go to a grocery store or little convenience store to pick up food that we can heat up in the room. YAY!

So back to “December Journaling If You Feel Like You Haven’t Achieved Much This Year.” Today we have Memories from the year that make you smile, no matter how ordinary.

My brain isn’t what it used to be; I’ve had brain fog since I had Covid in December 2020, and although the curcumin is helping, it’s definitely not what it was. So it’s difficult for me to think back on things. But…I do a reasonably good job at keeping up with facebook posts and a fair job of keeping up with my livejournal, so I can look back at those memories and see what that triggers!

Okay, first thing that came up from my livejournal (latest posts first) was from November, and it definitely made me smile.

Copy and pasted right from my lj —> Yesterday afternoon we played trivia after cake and ice cream for Mom. I got a few that I was very proud of! I knew Exxon Valdex, lorem ipsum, and a few others that I sadly can’t remember now. I should have kept notes, lol. But I was mostly proud of this one: The question was who said at the OJ trial, if it does not fit, you must acquit? I knew exactly who it was and I couldn’t think of his name! I could think of OJ Simpson, Kato Kaelin, Marsha Clark. I even came up with Mark Furman, and then I remembered in the movie I watched about it, the John Travolta guy saying “Bob” very disparingly, so I thought it might be Bob something until I finally realized now, that was Robert Kardashian (Ross from friends was him in the movie). I knew I could get it but my poor brain can’t do anything anymore! So I sat and thought. I had to put my fingers in my ears to concentrate. And then someone mentioned South Park. Lenora said she thinks it was her, saying 6-7. And that made me think of a song where the person was mentioned. I could hear the song going “I got OJ fre-e.” And it was South Park. No…no…it was Book of Mormon! It was Spooky Mormon Hell Dream! So I started singing it and then I got to the part Genghis Khan, Jeffrey Dahmer, Hitler, JOHNNY COCHRAN! Hooray! It wasn’t even for a pie but oh how proud I was that I came up with that!!!! And Travolta was Robert Shapiro and I had to look that up after and I had to look it up now but I got it!

Before that, it was how happy Sarah was when the band did such a great job at competition, and she hugged me, and thanked me for making her do band! That was very very happy!

I also smile when I remember being at Northwestern when we were helping Belinda get moved into the dorms, and the kids wanted me to take a picture of them – Lenora, Bennett, and Belinda, sitting on her bed. And then I turned around and took a picture of the always good sports, Mia and Ben R, who were leaning on the wall behind me and waiting for their spouses.

Oh! And Bennett and Mia got married this year, on January 25! That makes me smile and I also smile at how they decided to marry that day and it was my parents’ wedding anniversary. It made me very happy to see Mom’s wedding topper on the groom’s table (it was also on the cake at Lenora’s wedding, which was also happy but was last year.)

Right now I’m smiling while I’m in the dark car in the parking lot, typing on my laptop using my hotspot. I’m waiting for the Christmas musical show that Bennett and Mia are in to begin. Bennett wanted me to drive him here ahead of time, so I did that but then I had a couple of hours before the show started. It’s been very nice to just sit here in the dark listening to Christmas carols on the radio. Ben is giving Will a ride home from the hospital and Sarah is with Mom, another good thing. [Edited to add that I found out later that Karlene actually ended up coming over to sit with Mom, and Sarah got to go to rehearsal after all!] I’m very glad I get to support Mia and Bennett at their performance, especially because they’re both sick but the show much go on. I’m also thankful that Krislyn let Ben miss rehearsal last night and is letting Sarah miss it tonight. She is such a help with the Mom caregiver thing. So is Ben, Karlene, Sarah, Kevin, and Gary. And Lenora and Ben. And Bennett and Mia. And Belinda!

I have such a joyful, blessed life. I do complain quite a bit, but I really shouldn’t. This life is very good.