Category Archives: Belinda

Agent and auto and assistance

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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

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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.

Wisdom teeth

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Belinda got her wisdom teeth out yesterday morning. They said she did really well but she was very not happy afterwards. I have funny videos of Lenora and Bennett after their wisdom teeth came out. Belinda was either dozing or crying, so that wasn’t great. She took it easy yesterday and today she’s sore but doing better. She had me make chicken and rice soup for her today and that made her feel loved, I think.

When we were at the oral surgeon the doctor said he would call in a oral rinse prescription for Bennett, because he got canker sores after his wisdom teeth extraction, which apparently happens sometimes. They were going to call it in to CVS but it didn’t show up yesterday. The CVS people told me to wait until this morning and then check again. So it still didn’t show up and now it’s Saturday. I called the doctor’s after-hours line and waited on hold a long time, and then the person took my info and said I’d get a call back. When the call back came, they said it was because it was a prescription needing compounding and CVS doesn’t do that. If I had known it was a compound prescription I wouldn’t have asked them to send it to CVS. So I said to send it to the pharmacy in Tuttle. They said they would but the pharmacy here still didn’t have the prescription when they closed at noon. So Bennett gets to have a hurting mouth for the weekend.

I wonder if Belinda will get mouth sores as well.

Today is the kind of day that I really wish things like this were easier to navigate.

Ranger Preview

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Today we left the house at *gasp* 6 am and drove to Alva so Belinda could do Ranger Preview, which is a thing for high school seniors to find out more about NWOSU. It was a great time and she got to talk to professors from the psychology and English departments, which is what she plans to major and minor in. She also visited with some people from clubs and took a dorm tour. I really enjoyed seeing the updates on campus and I got to see one of my favorite professors at the history booth! He told Belinda that she sure had two crazy people for parents. It is neat to go to a small school and get to be remembered like that. History wasn’t either of our majors, and I only think I had two classes with this professor, but he remembered us. It was so good to see him!

We ate lunch in the school cafeteria and then got Taco Village to take back for the fam. Belinda did not have a problem swallowing all day! She still has not had to regurgitate food since the dilation procedure. She said that yesterday, she did start to choke on rice (it’s so sticky) but she got up and started to walk and it went down. I hope and pray everything keeps going well!

And we we got home, Bennett was feeling better after Mia took care of him and everything else around here all day. That made me feel very happy.

The editor at the local newspaper wants to write a story about Belinda, and I need to get the questions answered that he emailed me. One of his questions was if we had a gofundme or how people could help. I’d never done that before, but I asked our pastor if people could give to the church for Belinda, and then the church would give it to us. We did that before for a young man in our church who needed special surgery. But then tonight, I went ahead and made the gofundme. I wasn’t sure what to put down, but I thought about how much we have spent so far, and how much that may be in the future. After she turns 18, she won’t be eligible for the same assistance from the National Organization of Rare Diseases. Her benefits are on the pediatric level. And there’s not much help for Achalasia because it’s super rare. And with health insurance kind of in flux right now, it seems smart to try to get on top of that. Also, we need to determine how we are going to meet her needs in her dorm room. We might do a wedge under the mattress to elevate her head, but many of the other parents on the facebook group have gotten adjustable beds for their kids. I feel like that might be a better option for the dorm room, so she doesn’t slide down. It would be more comfortable for studying and reading too, since she’s not supposed to fully lie down anymore.

Anyway, the gofundme is kind of experimental at this point. We’ll see what we think and make adjustments as we go.

Insurance schminsurance

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Today was the day I battled insurance!

I’ve been having some trouble getting one my own prescriptions filled with the specialty pharmacy I have to use. They told me our insurance showed as terminated on Oct. 31. I explained that we had extended it with cobra, and they were basically like, too bad, so sad. I have waged war with this specialty pharmacy before so I wasn’t super surprised. Then after two days of calling them, they discovered that I needed to get a refill order from my doctor anyway, so I did that.

Last night Ben and I rolled into CVS to pick up a prescription for Belinda. And they said, of course, that our insurance showed as terminated.

Ben got in touch with HR and it went back and forth a little. Today my doctor messaged me and said the prescription had been sent to the pharmacy. So I decided to call the insurance company myself and after an hour wait on hold, got connected to a very nice woman who set up a conference call with us and the specialty pharmacy. And the pharmacy rep told us that the office we made the cobra payment to needed to contact them and tell them that the information was incorrect and that we were covered.

I passed this on to Ben, who was tired of being the middle man and asked the HR rep if could just talk to me, and that’s what we did. I emailed her what the pharmacy had said, and she took care of it. The specialty pharmacy is updated and they also left a voicemail to CVS, so hopefully that one will be updated fast too. I am very thankful for his kind former co-worker!

Okay, so I just called the specialty pharmacy and they have not gotten the prescription from the doctor. Sigh.

I guess I’ll call CVS and see what the update is there.

It’s annoying that so much was paid for the extra month of insurance, and for two weeks we didn’t have pharmacy coverage. I am thankful that we didn’t actually need it, though. My prescription is late, but I did have a few extras from days I forgot to take it, so I think it will be all right.

And in the grand scheme of things, these problems don’t seem very big at all. I know that I am blessed. Thank you to everyone reading my updates and praying for Belinda, and may God bless all of you. <3

For sure spasms

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I asked the parents in the kids with achalasia group on facebook, and it is definitely spasms. Several people said their children describe the sensation the same way.

I’m very grateful that Belinda doesn’t have them very often. I’m also grateful that they don’t last very long for her. She did say today that sometimes they last longer, like a few minutes, but still. One parent said their child has experienced them from an hour up to two days.

There is medication you can take that supposedly helps with it, but Belinda and I talked about it and she doesn’t think it’s at a point that should be medicated.

She’s also supposed to think about what she ate and drank before one, so she can figure out her triggers. She said she hasn’t had one since the dilation, so maybe that is helping.

I’m glad that she talked about it and now we know what it is. She was frightened that she was having heart problems, but now she doesn’t have to worry about that.

Oh, and bonus fun, the insurance through cobra seems to be working fine EXCEPT for prescriptions. Both pharmacies we use says that it says our insurance has been terminated since Oct. 31. Today I was on the phone with one of the pharmacies and also the insurance company. They were all nice but it’s apparently out of their hands. Insurance lady’s advice was to wait until tomorrow and see if the computers have caught up by then. Even though this is Day 14 of the coverage with cobra. The person at the pharmacy said that the office we paid for cobra coverage needs to contact them and tell them we are indeed insured. So now it’s back in Ben’s court, to deal with HR.

My speciality pharmacy prescription is now 7 days late. Belinda has one to pick up, and so does Lenora, and we can’t do it. It’s pretty bad that the cobra extension cost so much and it’s not even working correctly.

Possible spasms

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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

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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.

Back home!

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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.

Waiting

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Belinda is back in the operating room now. They said I should get to see her again in about an hour.

We took an Uber here and the guy was very nice, but quiet. That was fine with me because I like to be quiet too. Belinda and I pointed out things we saw on the way. When we got here, I didn’t understand how the elevators worked and an employee helped us but he seemed a little annoyed with me, sadly.

***My pager went off while I was writing this and the procedure went well and it’s already over!! She’s in recovery now and my pager will buzz one more time when I get to go to her.

Well, I wanted to recap what happened this morning so I’ll pick it up there.

I made a wrong turn upstairs and led Belinda through the cafeteria before we found the right direction, which was a shame since she couldn’t have anything to eat.

**My pager went off again and now I’m back with her in Recovery Bay 35. Maybe I’m not meant to recap the whole day. I’ll try to make things quicker.

So the lady was real nice when we got checked in. We got the pager then. It went off when it was time for us to go to registration. We got our bracelets from a coolo guy and then he said that the computer showed there was a $500 facility fee. I said that we were told we had met our deductible and out-of-pocket max and he said he didn’t know why it was on there so not to worry about it. We will see what that leads to.

They had a hard time putting in the IV again. The lady that everyone said was the absolute best tried and failed twice, and it took a long time and there was a lot of blood. So then they decided they needed an ultrasound to get it.

Dr. Kane and Dr. Petrosyan came by to visit about the procedure. It was great seeing them in person again. I am so thankful for their work. Belinda talked about her college plans and Dr. Petrosyan told her she could accomplish anything. He came from Armenia in 1991 when he was 16 years old and didn’t know a word of English. And now he’s a surgeon.

After they left, a lady I have talked with through the facebook group came over with her daughter, who also has achalasia and is having an endoscopy today. They are from California. It was great getting to visit with them and Belinda and the other girl exchanged phone numbers. It is good for both of them to know someone who truly understands. While they were there, the ultrasound team came in and worked on Belinda and finally got the IV in.

The other family got called back to prep for surgery, and it was time for Belinda’s procedure. That team was nice and asked Belinda what music she wanted playing. She jokingly said Ariana Grande and that’s what they played as she was being wheeled out.

They have a screen on the wall in the waiting room so parents can follow for updates. Belinda was number 15603. I opened my phone and saw that Belinda’s ACT test results were ready, so I pulled out the laptop to check that and to update people on facebook and by text.

Here’s the results that Dr. Kane showed me after.

**Well, now she’s gotten herself discharged! She’s changing while I’m desperately trying to finish this. Quick once it started!

When I got back here she was awake and talking to the nurse. She had a small bottle of water, a cup of apple juice, and an orange popsicle. We hung out and talked and she looked at her phone and I typed. Now she’s sitting up and she said she’s lightheaded. She said she shook her head to get the hair out of her eyes and almost fell over.

No food restrictions now. We have found a Cheesecake Factory close to the hotel, and that’s what she wants. She says she needs a piece of s’mores cheesecake immediately. So I guess that’s our next plan. Get back to the hotel and either dump stuff off or rest and then do it. I’d rather go to the hotel restaurant but she’s apparently too good for that.

Anyway, she just opened the curtain cause she’s ready to get out of here. But the nurse caught her because she’s supposed to leave in a wheelchair. So we’ll wait for that and then I guess I’ll call the uber and we will roll out!