I’m so thankful for the editor of the Tuttle Times, who wrote a story about Belinda’s experience with achalasia for this week’s paper. It was on the front page! I hope they don’t mind me posting it here.
Belinda in the news
Reply
Author Archives: Regina Garvie
Spring semester begins
Today is the first day of the second semester of Belinda’s senior year. Hard to believe! She received her honor roll cords for her graduation today. Now she will have those and also her cord from Girls’ State.
Her spring semester of concurrent enrollment at NWOSU started today, and he went to her private math tutoring as well. Tomorrow she’ll start the last semester of homeschool co-op.
I guess I’d better start the Senior Sunday posts now on the social media. I’ve been putting it off (and I guess I feel a little guilty that I didn’t do it with the other two, but I don’t think that was as much of a thing then).
The editor at the Tuttle Times wrote a really nice article about Belinda and the achalasia for this week’s paper. I appreciate his work on that so much! Since her disease is invisible, it is good to let people know sort of what she is going through. She appears to be so super healthy.
Thankful
I am so thankful today!
I thought I didn’t have insurance any more, but yesterday I discovered I am still covered through the 12th. So I was able to keep some appointments next week and I got another two moved so they will be next week too. I also saw my regular doctor yesterday. She was so great and ordered all the labs I would have needed. She also offered to send more prescriptions to the pharmacy, but I am actually doing okay there. I got several 90 day prescriptions filled near the end of November. Yesterday I picked up three prescriptions, and today I was able to get enough cgm supplies to last me two months. That feels good!
Belinda is doing well. She is enrolled for her last year of concurrent enrollment, and she is taking geography, non-western civilizations, and Spanish. Those classes start on Jan. 13. I got the books ordered today and found the geography book on Amazon for about $50 – the ones at the school bookstore were $225!! The other ones were a better deal at the school bookstore. Her homeschool chemistry classes also start up on the 13th, and her last semester of homeschool co-op starts on the 14th. We are in the last stretch! I still need to get her senior photos set up (we had to cancel the earlier ones because she didn’t feel well). I also need to start thinking about announcements, crazy!
Ben R and Lenora are doing great. She was so glad to be done with college and they’re planning to move back to our town this summer when their lease is finished. Bennett and Mia have been working hard getting their future home ready. The wedding is Jan. 25. The showers are on the 11th and 12th and I got my gifts ordered and gifts for Mom to give them ordered.
Right now everyone is in this house and they have been here for the whole holiday season and I am very happy about that.
And I am also VERY VERY THANKFUL for the holes in my walls! See, like two years ago we had our house rewired and they had to make some holes in the drywall and Ben said he would fix them himself to save us money. But he didn’t get around to it, which I understand, because it’s a big undertaking. But I asked him to fix one hole, the one in the stairs, for me for Christmas. With that done, I could at least repaint the stairwell and the hall, since it was the only hole. So he did that. And then the next night, he did another. And the next night, another. And they’ve just kept going. Right now he is in the dining room, getting the wall shored up better to stand against the cold north wind before the storm comes in tonight. This is wonderful because he has been very down on himself about not getting a job yet. It’s really been hard on him. But now he is singing praise songs and fixing the wall!
This is wonderful and a great testimony because I know I’ve talked about how I am trying to follow the wisdom of Merlin Carouthers and thank God for everything, even if it’s something I perceive as “bad.” So at first when Ben didn’t fix the holes, I was bothered. But after a while, I started thanking God for the holes. It didn’t sound genuine at first but I kept at it, praising Him for it even. The truth is, we don’t know what God has planned. But He does. God knew way back then that these holes would prove to be something that could lift Ben out of his funk and give him a sense of purpose and completion. He is accomplishing something very great for his family, and I believe it is helping him realize that he is fully capable, and that he can do whatever he sets his mind to.
I do believe he will get the perfect job at the perfect time. God knows. And so I keep thanking God for this job loss, and I know that everything will work out for good.
I am so blessed!
EDS ~ POTS ~ MCAS
Today we went to the Ehlers-Danlos specialist in Tulsa. She was WONDERFUL and really listened to us. She agreed with the diagnosis of Ehlers-Danlos Syndrome (EDS), and also added Mast Cell Activation Syndrome (MCAS). She said Belinda also has Postural Orthostatic Tachycardia Syndrome (POTS) but it doesn’t seem to be giving Belinda much trouble at this time. She prescribed an antihistamine, which should help with some reactions Belinda has been having due to the MCAS.
We will go back in four months. In the meantime, she wants Belinda to see an allergist.
It’s a lot, and a ton to learn about. Fortunately, it doesn’t seem to be affecting Belinda too much. I just want to be on top of it for possible future issues.
Here’s a website with some info: The Trifecta: EDS, MCAS, & POTS
Oh, the doctor also said that while the EDS didn’t cause the achalasia, it was very possible that the achalasia was able to develope because she was at a higher risk due to the EDS.
We also went to the Oklahoma Aquarium today, and the Sapulpa Christmas Chute, since we were in the Tulsa area anyway.
Health insurance
So Belinda still has Soonercare, but because Ben finally got the unemployment benefits, we have too much income for he and I to be on Soonercare. It’s a strange feeling, not having health insurance. I already checked with Insure Oklahoma and healthcare.gov, and those premiums are not attainable.
I guess I will look into emergency coverage, so we are covered if something terrible happens. I have enough prescriptions for about a month. And then…I guess I won’t take those any more. I don’t know. I don’t know.
If Ben is still unemployed in the middle of March, the unemployment benefits will run out and we can get on Soonercare again.
I’m glad Belinda still has coverage.
I am taking her to the Ehlers-Danlos specialist tomorrow. I cancelled my appointment but hers is still on. I am planning to take her to the aquarium that morning in Jenks, and so one nice thing about losing coverage for me is that with my cancelled appointment, we will get to spend an extra half hour or so at the aquarium.
I am so tired.
Good-bye and good news
Today Belinda went to the dentist for her cleaning. This was her last time at the pediatric dentist. We would have stayed there for longer, but the dentist who ran it for so long is moving on to something else, and also they don’t take Soonercare. But it did work out.
I discovered this weekend that there is a continuity of care period, where new Soonercare people can see their old providers for 90 days, even if they aren’t in network, and it will be covered. That was very good news. I spent two hours on the phone this morning, confirming that and finding out what to do. The dentist’s office didn’t want to file it, so I got a receipt and the new dentist insurance (Liberty Dental) is sending me a form. I can send back the form and receipt and they will reimburse me.
It’s hard to believe that we won’t be going to Dr. Brackett’s office anymore. He was such a great dentist to all three children for so many years. He was truly a blessing in our lives.
Then tonight we went to her senior class meeting, and she was elected president of the class! She was really, really happy but didn’t make a big deal of it until we were in the car. In addition to her other duties, she’ll give a speech at graduation.
We go to the EDS doctor a week from tomorrow.
Unemployment
Ben’s unemployment went through last night! That is going to be a real help during this time. It still doesn’t raise our family’s income over 185% of the poverty level, so we will still be able to continue with the Soonercare coverage. I will need to contact them next week and get this update into their system.
Another great thing I found online today – As a child under 19, now that she is on Soonercare, she will be able to stay on it for a while, even after Ben gets a job. It’s called 12 Months Continuous Eligibility, and I don’t know if that means 12 months from Jan 1, or 12 months from when she started, or 12 months after we have the life change of our income increasing over the limit. Whichever it is, that’s a great relief with her health issues.
I also discovered last night that there is something called Continuity of Care that says new people on Soonercare have like 90 days to transition away from their current out of network doctors. I’m going to call Monday and find out more, but if it means what it sounds like it means, Belinda will be able to see her pediatric dentist and pediatrician for a few more months (neither take Soonercare). She is so close to aging out of those doctors anyway, but it would be really nice if she could stay with them for now. And hopefully Ben’s back in business by then and she wouldn’t have to transition out at all until she ages out for reals.
Agent and auto and assistance
I just got off a zoom call with my agent and that was good. It was nice to just talk to her and feel like a writer for a little while. She’s having a hard go of it right now with her life, just like me, and we caught each other up a little on that and then discussed my books. She’s going to reread the young adult novel I sent to her, and she’s going to send several of my books out again in January.
When we were done I called our insurance agent because of that accident Belinda was in back in October. I asked for their advice, since I could not afford to help in any way with the other person’s car – and that’s still assuming she was at fault.
So they told me to go ahead and file a claim. The deductible is $500, which is less than what he was wanting, but I also don’t have $500, of course. They said that they will write a check for the amount of the damage minus the $500, and if I can get someone to fix it for the amount they give us, I can do that. So maybe I will get lucky on that. It will be nice to fix the car, since it was in pristine condition before this, since it was my mom’s. Our insurance will go up, they said. But I’ve already paid the insurance for December, so this is future Regina’s problem. And surely he will have a job by then! Or something!
The assistance part of my title is that I went to a food pantry today. I’m a good stockpiler so we have canned food, but we didn’t have much perishable food. They were so nice and it was so hard. When the lady at the church showed me the bread table and told me to take all I wanted, I started to cry. They also gave me a small amount of milk and orange juice, plus two pounds of ground beef and a package of hot dogs, along with some boxed and canned things. I tried not to take very much. I felt guilty, like I was taking from people in more need than me. But it really will help us.
It was a husband and wife team that ran the food pantry, and they knew Belinda because the husband leads our American Legion, and they’re the ones who sent Belinda to Girl’s State. They told me to tell her hi.
Quandry
So Ben’s former employer is contesting his application for unemployment benefits. He has a reasonable response to every thing they’ve brought up, but it’s all taking so long. We have no savings. Life and Belinda’s medical stuff finished that up. I expect some small checks from the newspaper, and hopefully that will keep the bank account from going under, but I don’t have much hope in that, since it went under last month at the very end. I sure wish the electric didn’t wait until the end of the month to come out!
The quandry is…we need to keep the Soonercare insurance for Belinda if Ben doesn’t have a “real” job that includes benefits. He’s applying all over and has been in conversation with some companies, and he’s trying super hard, but it’s just not happening so far. And still, we can’t really go out and get temporary jobs because that will cause our income to go up and we could lose the insurance. We can’t risk that.
I can’t figure out what people do in this situation. Do we try to find odd jobs or something under the table? That seems wrong, but I know people do what they have to do.
I guess I should try to ascertain exactly how much money we can make and still be able to keep Soonercare. It is SO HARD to try to figure out this stuff though!
I don’t even know if she can stay on it if Ben finally gets unemployment benefits, since that would count as an income increase. Everything is so confusing and I’m tired.
Memory
So today I was having a small pity party for myself, because although I try to be cheery and positive, some times I feel like I can’t fight that good fight any more, so I get quiet and weird and feel very alone. That was happening this morning, but still I made breakfast, emptied and loaded the dishwasher AGAIN, and helped Mom get ready for church. We got there a little late and they were handing out the wafers for the Lord’s Supper.
As an aside, the wafers are no longer the tiny square crackers of my childhood or the broken saltines of a few years ago. Also not the super-sterile cup and wafer combo we went to in 2020. Now it’s a strange circle that tastes like rice and I suppose it’s gluten free. This time the juice was also white grape, which also got my attention. I thought about how when I was young, we used red grape juice, and then later it seemed like it was always purple grape juice. The white reminded me of how the LDS use water for their communion. I miss the red grape juice. Sometimes I find it at the store and buy it and it’s so decadent to be able to drink as much red grape juice as my blood sugar will allow. I still think of it as “Lord’s Supper Juice.”
Okay, so back to this morning. Mom did not even know what the white circle was when she got one. She looked at it quizzically and I told her to just hang on to it. I assumed since it was a super-light almost see through papery thing, she didn’t know it was a communion wafer, and I couldn’t blame her. She held on to it. Then the grape juice came around, and she seemed confused by that too. Obviously because it was white and not colored like blood, I supposed.
So it came time to eat it, and I got her to look at me and ate it, to let her know it was indeed edible. She got it then and ate the wafer. Then I drank the juice, again motioning to her to do the same. She was not done with the wafer but I rushed her because everyone else was standing up to sing. So she downed the juice. I put both cups in the little holder under the chairs in front of us.
Mom still looked confused. I leaned in. “You know that was the Lord’s Supper, right?” She said what? and I repeated myself, just a little louder but still under the singing.
Mom shook her head. “I’ve never done anything like that before.”
And then I was fighting back tears. Mom has gone to church since she was a little kid. I’ve sat with her through dozens of repetitions of the Lord’s Supper. My memory is very strong of this happening in my childhood, sitting next to her, emulating her. And she doesn’t remember it at all. The weight of her memory loss weighed down on me SO VERY HARD in that moment and all I could do was wipe the tears away so she wouldn’t see and become concerned.
I’m so tired. I’m so, so tired. I came home and did my best to be a good hostess but honestly, we just watched TV and ate the food I put in the slow cooker and the food was good but I felt like I was barely there.
A couple of other things happened today that normally would not be a big deal but this time, I cried again and one time I had to take myself away from the others and just lie down and be alone on the bathroom floor.
I did not mean to get so personal on this blog. This is supposed to be my writing blog. I really should just put this on livejournal and not let my secrets of crazy out in a public place. But I don’t think anyone really reads these unless I post one on facebook with an update on Belinda, so it should be all right. At least it’s content, ha.
Anyway. Tomorrow will probably be better.
