Category Archives: Belinda

Dentist

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Belinda went to a new dentist on Monday. Her pediatric dentist left his practice in November, and Belinda had never been to another dentist in her entire life. Since her insurance didn’t have that office in the network, we decided to go to a new dentist entirely. We chose one just over the river in Mustang. They’re all very nice and everything seemed fine…and then they said that she had TWELVE CAVITIES. Well, obviously I was very sus of that information, since Belinda is great about oral hygiene. She always brushes twice and day and flosses once a day. Now, I knew that her pediatric dentist had said she had two shadows that needed to be looked at, but now, four months later, there are TWELVE?? I asked a lot of questions but the dentist seemed positive. He also said that these had been there for at least two years. Um…no.

So on the way home I was talking about second opinions and that’s when Belinda wondered aloud if it could be from the achalasia, like acid going into her mouth. I hadn’t even thought of that. How awful.

I went home and got on the achalasia parents’ facebook group and some people there said their kids had the same issue. I still contacted insurance about a second opinion, just to be sure, and they’re supposed to get back to us early next week about that.

If it is acid, I’m hoping that pepcid that the allergist and internist want her to take will help with that. And I am thankful that we’re finding this out now, before things get worse. We’ll just have to do whatever it takes to protect her teeth.

Another thing to be thankful that it happened before college, and before she’s 18, so I can handle it all without extra difficulty.

Allergy Testing

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Belinda had her allergy testing today. She has been not taking her antihistamines in preparation for this, and she’s been having a rough time with spring allergies. So today we found out what gives her the most trouble. The worst of the worst turned out to be elm pollen, which is fun since our house is surrounded by elm trees.

The nurse pricked her skin with different allergens, making Belinda’s back match the grid on a chart. After that, she took the ones that did not have much affect and injected them into her arm with another grid pattern.

So the doctor is having her take two zyrtec every day, along with two pepcids. Both target different types of histamines. Now back to the internist in Tulsa!

Allergist

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Yesterday Belinda went to the allergist! This is Dr. U.G. and it was the first time she saw him. Everyone in the clinic was super nice. Dr. U.G. discussed her diagnoses with us and then ordered several tests. Then we went to the DLO place for a blood draw and a urine test. They also gave us some stuff to do a 24 hour urine catch, which I’d never heard of before. We are waiting until Monday since she will be home all that day. We have to keep it in the refrigerator(!!!) all(!!!) day!!!! I don’t know how I feel about that. My eyes are being opened to all kinds of new things.

He told her to stop taking the antihistamines for now, and in two weeks she will come back in for the actual allergy testing.

After the appointment and DLO testing, which was in Edmond, we took the Interstate north and went to Enid that way. She had a proctored test for Spanish at Northwestern that afternoon.

She said she was going to do schoolwork, but instead she fell asleep and slept for fourteen hours straight. I am so glad! Since she started working at the coffee shop she hasn’t gotten as much sleep as usual. She said that she estimated she had gotten about 25 hours of sleep in the last five days. It’s taking a toll on her too, she’s overwhelmed by even little things right now. I need to remember to treat her with kid gloves.

Ben still hasn’t found a job. It’s so difficult because he can’t even take a small job in the meantime, or Belinda might lose her Soonercare insurance. I know it’s his neurodivergence that makes it hard for him to really go after it with everything he’s got. He has a hard time with rejection, and putting yourself out there like this takes rejection.

Sarah is living with us now, through the end of the school year. I am so glad she is here.

Allergy Testing Scheduled!

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Finally! After going through hoops for months, Belinda’s allergy testing has been scheduled for March 13 at a clinic in Edmond that specializes in allergies in people with Mast Cell Activation Syndrome. This is one more thing we need to get taken care of so everything is checked off medically before she starts college in Alva in the fall. She’ll also be 18 then, and so she will have to handle more of her medical care as an adult. I will miss having healthcare professionals talk to me without hesitation, since she’s still 17. If we had discovered her issues after August, it would have been so much harder. I thank God that she was diagnosed when she was!

After that, she will go back to the internist in Tulsa on April 17.

It’s hard to believe she will graduate in May. I need to get senior pictures scheduled and start thinking about graduation announcements.

I just realized that her entire high school career has included us dealing with rare disease health care. I pray that her college experience goes smoothly and that the diseases don’t keep her from meeting her goals!

Allergist

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I called the allergist again today. They have gotten the referral, and they got the confirmation from insurance they needed today, hooray! Now the doctor will look at everything and see if he believes he will be the best doctor for her. I sure hope so because this has been such a struggle. I’m praying that God’s will be done, though, because I know that even if I’d like to have this doctor work out, if it’s not supposed to be then that’s the way it goes.

Anyway, the lady said they might get back with me today but probably early next week!

EOBs, allergies, and other fun things

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We got a bill from Children’s National with two charges on it, one for Belinda’s video six-month follow up after the POEM procedure and the other from the dilation procedure in DC on Nov. 5. Both should have been covered by insurance, that’s why we continued to pay the big COBRA bill for November to keep her insurance going. Ben sent an email to his former HR rep who looked into it and then said that it looked like the EOB was not on the first one (explanation of benefits, if I’m remembering right) and the second one was still processing. Okay. She asked us to let the hospital know about the need for the EOB on the first claim.

So I emailed the thoratic surgery department. Those emails are generally answered by an absolutely lovely lady who always helps us with whatever we’re dealing with for Belinda. This lady gave me a contact with the billing department at the hospital but also said that she was going to ask the providers to waive the first fee completely. So if that happens, that’s nice for the insurance carrier! If they can’t waive it I’m supposed to get in touch with the person at billing.

The other one we will wait longer on to see what insurance does with it. I don’t like having the bills hanging out like that, but that’s what we have to work with.

My other new struggle is getting her an appointment with the allergist. The internist she saw in December wanted her to get that done and there’s another appointment with the internist in March, so it really needs to get going. But because she is in Tulsa and doesn’t usually refer to OKC, she wanted us to decide who to go to. On the EDS facebook group for Oklahoma, several talked about Dr. U.G., and that’s who we asked for. And then a month goes by. So I contact the internist office again and they say they called it in but he isn’t accepting new patients. Ugh. So I go on the fb page again and find another person and they call in that referral. But when I call that allergist, turns out they don’t take Belinda’s insurance. Okay. So I get back on the fb group, and someone on there is recommending Dr. U.G. and saying they went there just a few days before for their first appointment. What? So I called their office and yes, they are accepting new patients. So I get the contact information for Dr. U.G. and then I ask the internist to do the referral to him.

What I think happened is that Dr. U.G. used to be at a different clinic, and maybe that’s the one they found that said they weren’t accepting new patients. So I waited to get the call. No call.

Earlier this week I called Dr. U.G.’s office and left a message for a call back asking if they had received the referral, but no one has called me back.

I guess I’ll try again today. I just don’t feel like it. But I know I must.

Spring semester begins

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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

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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

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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.