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
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Category Archives: Achalasia
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.
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.
Ranger Preview
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.
Thirty days of gratefulness – An Opportunity
Today’s prompt is An Opportunity.
I am very grateful that I am now writing again for the Tuttle Times. My friend Jayson is the editor now, and he posted on facebook that he was looking for something to write for Minco and Union City, and get paid by the story, and I commented that if he was ever looking for someone for Tuttle, to hit me up (cause I don’t want to do Minco and Union City, sorry not sorry). He did, and I’ve been doing stories them for over a month now, which is wild because it’s gone by very quickly. It’s not a lot of money but it is nice to be getting a little something. And I am enjoying getting a toe back into the local news and community scene. It’s been a long time.
It couldn’t have come at a better time, too. I used my first check to help us out during the trip to DC for surgery earlier this month. And now the second and third checks is keeping our bank account from going negative, so I am very grateful for that!
When I commented on that post, Ben was still employed with no inkling that he was about to lose his job of 28 years. I just thought it would be good to write news again and to make a bit of money at the same time. But God knew what was to come. I believe that He put this situation in place, and it will help us through this difficult time.
My triumphant return into the world of journalism, in the Oct. 3, 2024 edition.
And now you know the rest of the story.
Insurance schminsurance
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
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
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
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!
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.