Possible spasms

Posted on November 12, 2024 by Regina Garvie

Yesterday Belinda went to her pediatrician to discuss a strange problem.

When we were in DC, the anesthesiologists asked if she had any heart difficulty, and she mentioned that sometimes it felt like her bones were burning. I was startled to hear this and didn’t know what to make of it. She said it just comes on suddenly without warning, and feels like everything is on fire as she gestured to her chest. The anesthesiologists didn’t seem concerned. I thought maybe it had something to do with the Ehlers-Danlos and I looked that up later and it seemed possible.

Anyway, I got her the appointment and we went in yesterday. At that time, she told the doctor that it is in her jaw and chest (I thought she meant her whole body before this) and it feels like her ribcage is being spread out. She has it once or twice a month, it lasts for less than 30 seconds, and is excruciatingly painful.

The doctor began explaining the nervous system but my mind clicked immediately over to esophageal spasms, which most of the facebook group parents say their children have. The doctor agreed that it could be that. I did some research and it sounded likely, including the jaw pain, which I found surprising.

I’ve posted on our group to explain the sensation and ask what their children say their spasms feel like.

If it is spasms, I don’t think there is anything we can do but just knowing what it is, and that it’s not life-threatening, will hopefully make it easier on her.

Waiting for the pediatrician

EDS appointment set

Posted on November 11, 2024 by Regina Garvie

I made an appointment for Belinda with an Ehlers-Danlos specialist, and set up one for myself as well. The only specialists all appear to be in the Tulsa area, unfortunately. The appointment is in December, so we’ll see where we are with the health insurance debacle.

I think that a lot of the pain I’ve had in my life is probably due to this, and I’m hopeful that even though Belinda doesn’t seem to have problems from it, we might be able to head things off at the pass.

Thirty days of gratefulness – A Smell

Posted on November 11, 2024 by Regina Garvie

A Smell. I’m tempted to link back to one I wrote on this a few years ago, which was the smell of my grandparents’ woodstove. But I think that would be cheating.

I can’t smell as well as I used to. Covid took that from me in Dec. 2020. I can get some things, but not all. One thing I can’t smell very well is poo, which would seem like a good thing but it is not if your house smells like poo and you don’t know it and you have guests. That’s not good at all.

I am grateful for the smell of Old Spice after shave. My dad wore Old Spice, and when I smell it, I think of him. Ben and Bennett both use Old Spice deodorant, but the after shave has a bit of a different scent to it.

I actually haven’t smelled it in a very long time. I wonder if I can still smell it, or if it would be different now?

Thirty days of gratefulness – A memory

Posted on November 10, 2024 by Regina Garvie

Today’s topic is A Memory.

This is difficult for me because I try to be thankful for every memory I have. See, a few years ago God led me to this little book called “The Power of Praise” and it talked about how important it is to be thankful to God for all things. All things. Good or bad. Because all things work together for the good of those who love God. And so I have thanked God for all of the things in my past. It really is freeing. I know that even when things seemed bad to me, it’s all part of a beautiful tapestry of human existence that I will not comprehend this side of heaven.

And besides that…it’s tough to pick one memory.

So I will pick the cherished memories I have of my sweet boy cat named Pal, who along with his brother Drumm were my babies before I had babies. Both were good boys, but Pal was especially a Mama’s boy, and if I reached down to pick him up, he would get up on his hind legs and stretch his arms up to me and I would pick him up and put him over my shoulder. I didn’t teach him to do that. He just did it. The memory of that sweet cat reaching up to be held is the one that I will choose to single out and be grateful for today.

My twin men – Pal (on the left) and Drumm.

Thirty days of gratefulness – A TV Show or Movie

Posted on November 9, 2024 by Regina Garvie

Backdated…I really was behind there!

The prompt for this day is A TV Show or Movie.

Of course, we all have lots of TV shows and movies that we love and I suppose should also be grateful for those.

I’m going to say St. Elsewhere because that’s the show that Ben and I are binging right now. I saw it when it was on TV back in the day (and looking at the date, I guess I was like 7 or 8 and this is wildly inappropriate for that age, ha ha). Anyway, Ben hasn’t seen it and I only remember some details so it’s fun for me to watch too.

But I am super thankful for any show that Ben and I like to binge watch together like that. It’s nice to have that thing that we can relax and watch together.

So that’s it.

Thirty days of gratefulness – Favorite food

Posted on November 8, 2024 by Regina Garvie

Backdated, ha ha.

My favorite food. This is weird because I’m not really sure what my favorite is. And since I lost most of my tasting ability to long covid, I’m extra not sure.

But..I know my favorite food is food I don’t have to cook myself! I don’t like cleaning up and am indifferent to cooking, but I don’t like having to plan meals anymore. My brain is tired and likes then other people plan the meals. Unfortunatley, I am the one who has to plan and execute most of the meals around here.

But this is about gratefulness, and I am so very grateful when I don’t have to do anything with the meal except eat it! I am very thankful for the times Ben or the kids have made meals for me. And I am thankful for the fact that we have been able to eat out many times in the past. Being able to relax with friends and family and enjoy a meal without any work is like heaven to me!

Thirty days of gratefulness – Three Small Things

Posted on November 7, 2024 by Regina Garvie

I’m still backdating, but I’m pleased with this one. I don’t think I will write much.

The three small things I am grateful for are my three babies. Baby Lenora, Baby Bennett, and Baby Belinda, and the amazing adults (and almost adult) that they have grown up to be. I am so thankful that God saw fit to put these people in my life. I am blessed.

Christmas 2008

Back home!

Posted on November 6, 2024 by Regina Garvie

We are back home from Washington. Belinda is doing very well. We did go to Cheesecake Factory last night and we got burgers. She did not order a veggie burger but that’s the server apparently heard, but she enjoyed it anyway. We both ate about half and took the other half to go. She also got the cheesecake she wanted. We walked back to the hotel and read and watched election results for a while, and ate our leftovers. She did great eating both times.

The next morning we got up and packed. We took our things downstairs and checked out. The hotel stored our luggage in a locked room while we went out into the city again. We walked to the White House for our tour. It’s self-guided now and didn’t take very long. She didn’t want to read everything and I guess I really didn’t either. We went to the National Archives next, since the White House didn’t take much time. The walk was pretty long and it was also hotter outside than expected. We saw the Declaration of Independence, Bill of Rights, and the Constitution. We walked to Chinatown next, and ate at a place Aunt Nancy recommended, Wok and Roll. I liked my sesame chicken but her teriyaki chicken was fantastic. Soup was very good too. We wrapped up our leftovers and got an uber back to the hotel, where we got our luggage, and then continued to the airport.

We got to the airport three hours early but it was really quite a big three days, and we were ready to just sit for a while. We filled our water bottles and I read and used my computer. She used her phone and played on her switch. She ate her leftover food too, and everything still went great. She had priority boarding again and this time we sat in the front seat with the extra legroom. It was a drag not getting to stow our stuff under the seat, and having to put it in the overhead bin, but the legroom was super worth it. I had my leftovers on the way home.

Ben was waiting for us at the airport, and he carried some of our luggage. Belinda wanted something sweet so went drove through Starbucks and she had a refresher and a cake pop.

It has been so nice to see her not choking even once since the procedure. I am so thankful and I pray that it stays in good shape for a long, long time…like forever!

It is great to be back home.

Thirty Days of Gratefulness – Something in Nature

Posted on November 6, 2024 by Regina Garvie

Truth time, it’s actually Nov. 14 and I completely forgot about this project until yesterday, and then I promptly forgot again until today. I’m backdating it so it will flow properly but whatever, considering everything I am doing GREAT!

Something in Nature is the topic for Day 6.

I choose bodies of water. Isn’t it wonderful when you have a view of water? When I was growing up, my mother always wished that we had a pond on our property. My sister liked to sneak across the neighbor’s field and go to the creek near our house, and I went with her a couple of times. It was super nice to wade in the water and splash our feet into it.

And lakes are so wonderful too. To go out on a paddleboat, or fish, or even in a floatie, I have always enjoyed my time at lakes.

The ocean is magnificent, and somehow so strange how it goes all the way to the horizon. I like the ocean, but I am also a little frightened of it – of the magnitude, and the depth, and the things that lurk in the water that we can’t see.

When I was little, my parents would alwyas point out when we went over a lake or big river during car trips. I still do this for my children, even though they are grown. There’s something so lovely about serene about bodies of water.

So that’s what I’m grateful for.

Thirty days of gratefulness – A place that makes you happy

Posted on November 5, 2024 by Regina Garvie

Day 5 – A Place That Makes You Happy

Well, I don’t need to write much about this one tonight. I am in the place that makes me the happiest in the world…HOME.

I am so thankful that Belinda and I made it safe to Washington DC and back home. I am thankful that the surgery went well and that she can eat easier again. And I am so, so grateful to be back home.

I know a lot of places make me happy. But this one makes me the happiest of all.