Category Archives: Achalasia

Waiting, always waiting

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I’ve been on hold with Soonercare for over an hour. I got a letter from them that says I need to upload a document or Belinda will lose coverage. I already uploaded the document and it says on the portal that it was rejected. So now I have to be on hold forever to find out what is wrong and how to fix it. I’m thankful that I can get help but being on hold like this for hours is stressful. They do say they can call me back but I miss those calls every single time and my phone doesn’t ring when they call for some reason. So I’m just listening to their cheery music and waiting.

I have other calls to make too – another one that will require much waiting about our utilities. So I guess that will be my afternoon.

In other news, Belinda has been having a hard time in the school cafeteria. Meal plans are required at the school and she’s found it nearly impossible to get what she’s paying for. She said all the meals she can eat are very unhealthy (pizza and burgers) and the meals that are healthy (salads) stick in her throat. I sadly would have been very pleased with the unhealthy meals (and I was when I was in college) but she is a much more disciplined person than I am. She also is experiencing a lot of anxiety because she can’t get her food finished in time for the next class and she’s always self-conscious about having to regurgitate, even if she tries to be discreet at the trash can. So her therapist and her doctors in DC both submitted letters to the university to request that she be released from the required meal plan. I hope they agree, because it’s crazy to spend so much money on food that she cannot eat. She generally makes food in her room with her microwave and other little approved appliances. If they reimburse the money that she will not be using, she will be able to use that to finish paying for her books, and then she can keep her work study earnings for other expenses.

She also doesn’t love her medical bed at college. It bends like a hospital bed so she can be elevated, but she says it’s difficult to sleep like that. At home we just have a giant wedge that goes under her mattress, and she likes that much better. We might have to find another wedge that is sized for this bed, I guess. Bummer.

She’s been continuing her therapy sessions online, and I’m very glad about that. I know this time is more stressful than she realized it was going to be, and having that connection with her provider back home is invaluable.

What else…she just called me to let me know she got a 96 and then 10 bonus points on her first speech, and she was very happy but also told me she presented it well but the speech wasn’t really good enough to earn that grade. She’s always so tough on herself.

The recording on the phone just announced I have 75 minutes to wait. Every time they come on the line the number is going up. It was less than an hour when I first started waiting.

Oh! I got the approval email from Mercy Medical Angels this morning, and they will be assisting us with Belinda and my plane tickets again for her procedure in December. So that’s good, one less thing. I think Children’s National said they would start working with Soonercare 60 days before the procedure to try to get it approved. that will be in October. I sure hope it all works out – or that Ben has a job and we can use that insurance.

I am looking into helping Belinda apply for legal disabled status. She’s in school full-time and hopes to work full-time when she is out of school, but I am hoping she will qualify so she will be able to continue with Soonercare even after Ben gets a job. I would like to have some kind of assurance that she will continue to have medical insurance even when she comes off of Ben’s insurance at 26, and I have read that it’s better to get it done while they are still younger if possible. I haven’t found any negative repurcussions, but I’m still researching it.

We will go to Alva on Sept. 27 for Family Day. Sarah can’t go because she has a band competition, but Karlene is going to go to that with her. I’m thankful for my family.

Along comes Lenora

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And here I thought we were surely going to get to the bottom of the Healthcare Highways debacle. Lenora just brought me a letter from an office visit she had on November 1, 2024 (the day the super-expensive month of COBRA started) and of course Healthcare Highways has been denying the claim of $1,015. I had her take it to Ben and I guess we will either attempt to call them ourselves or try to get Kalee to advise us. This was unexpected, but honestly, not surprising.

On the Belinda front, I contacted NWOSU and they said the bed could be delivered anytime after August 4. I called the home health company and they said they’d call me back with a day and time because, obviously, we’re going to have to drive to Alva to meet them there and sign paperwork or whatever. I hope they don’t ask us to do it on our birthday.

Medical Debt, AGAIN!

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So I’ve had a collection agency trying to call me. They left a few messages and I tried to call them back, but then a machine answered that call and told me to wait for the next available agent. When the lady got on the phone she went through the huge rigamarole of information I needed to hear, and then I found out that the debt was from the Children’s National procedure in November. The one that we’ve been struggling to get the hospital and the old insurance to play nice on. So I got off the phone with her and called Children’s National. That lady told me that they had been trying to call insurance and they couldn’t connect with anyone. Which is interesting, seeing as the insurance company says the same about Children’s National. So this lady starts rattling off how we need to contact the insurance company and have them send an EOB and before she hangs up I get a chance to respond and I tell her that I have the EOB, Ben’s old HR rep sent it to me, and I sent it to Children’s National on June 2. She asks what email I sent it to and I tell her, and it’s the correct email. So she tells me to put Attn: Portia on it and send it again. I made sure to forward the original email to Portia, just to show that I did send it correctly the first time. And even if I didn’t put Portia’s name on it, I did put my name and Belinda’s and our birthdates, and Belinda’s account number so it really should have been sent to the correct person. Ridiculous.

Portia responded with two emails. First she asked for the physician EOB and said the one I sent was the hospital EOB. Ten minutes later she sent a second email that said “Email forwarded to our follow up team for further review.” So I have no idea what EOB I sent and when I open the file I don’t quite get it. So I forwarded both emails to the HR rep, and we’ll see what she says.

Oh, and bonus, now our credit score has gone from Very Good to Very Poor. A fun bonus while we’re also having financial issues.

Rerun

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Today I started reaching out concerning Belinda’s upcoming procedure in Washington. There’s no guarantee Humana Healthy Horizons will approve it, but I need to get my ducks in a row in case they do. So I contacted the National Organization of Rare Diseases, regarding Belinda’s Rare Pediatric GI Medical Assistance Program funding, requesting assistance with lodging and ground transportation while we are in Washington, and I contacted Mercy Medical Angels for assistance with the flights. I’m already tired of flying! Hard to believe since it took me so long to take that first flight but now I am super over it.

NORD funding is not guaranteed if they run out before the end of the year. I don’t know if there will be money there for her this time. And she will be 18 then, and I’m not sure how that will affect the pediatric part of the program, or the additional flight ticket for Mercy Medical Angels. But I know it will all work out.

I am so appreciative of organizations that help!

December procedure

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Belinda’s next procedure is set for December 17 in DC. I really wanted Belinda to go in September so we could be at the Pediatric Achalasia Awareness Night, but Belinda was adamant that she did not want to miss a single second of her first semester at Northwestern. The couldn’t do fall break or Thanksgiving break, so we set it for Christmas break.

Since Belinda is on Soonercare, she has to get special authorization to travel out of state for her procedure. On paper the procedure is something that can be here in Oklahoma – but we and the doctors believe she needs to have it with the specialists who have been treating her. The other thing is that these specialists are the only pediatric surgeons doing POEM, but she will be 18 in December, and although she’ll still be on Soonercare, I don’t know if they will take the pediatric part into consideration since she’ll be an adult. I wish we could just do the procedure in August before her birthday and get it over with! Anyway, a lady at the hospital will be working with Soonercare and Belinda’s doctor to get it approved. That’s another thing – Belinda will no longer be with the pediatrician that’s treated her since birth by the time the procedure comes around. But she will be with my doctor, and she is wonderful so I believe it will all be fine.

Anyway, even if it doesn’t happen, I still believe God is in control. And maybe Ben will have a job with benefits then and it will all be different anyway. There’s no point in worrying, even if my mind does think about these things.

I do need to focus on what I can work on, like figuring out if we can get assistance again from NORD for lodging and travel in DC. We may have to work on something new since her grant is for pediatric gi rare diseases, and she won’t be pediatric anymore. Hopefully it will just count through the rest of the year. We also need to contact Mercy Medical Angels. Again, since she will be an adult now, they might not be able to help with both of our flights. But we’ll cross that bridge when we get there.

In other news, the durable medical equipment company called we discussed Belinda’s adjustable bed. They asked if they could bring it Thursday, but I reminded them it was for her dorm room. Next week the college will start assigning rooms, and when we know the room, we will see when we can meet in Alva and get the bed set up. They said the mattress wasn’t very comfortable, but I think we’ll just have to see what it is like and then get something different if we need to. Probably we could try to get a better mattress or topper through Soonercare because of the Ehlers-Danlos…but if we can swing it on our own, I’m just going to do it that way. Less stress for Belinda.

Financially we had a bit of a setback because our propane tank had a leak and we lost about 500 dollars worth of propane over the course of two weeks. We didn’t realize until we ran out. Right now we don’t have hot water but it’s not the end of the world. Ben is planning to fix the pipe. But we also owe around 800 to the propane company and it has to be paid before we can get more. So I called the propane company to ask if we could do some sort of payment plan and get a small amount of propane in the meantime, after the pipe is fixed, and they said that would be fine. I was very thankful. We have done business with them for almost 30 years and it is so wonderful when you have that kind of relationship. We got off the phone and I was thinking about that, and then they called back and said they’d discussed it and they were going to pay for half of what was lost – taking about $250 from our bill! I didn’t even know what to say – I was so tongue tied as I was thanking them! What a kindness!

God is with us, every day. I am thankful.

Also, here’s a weird picture Belinda let me take at the Ripley’s Believe it or Not Museum in Gatlinburg, Tennessee, when we were there for her dance nationals two weeks ago. I actually meant to post an album on facebook, I guess I should get on that soon. If you want to see a bit of what Belinda’s other rare disease, Ehlers-Danlos Syndrome, looks like…this is part of it. At least she can’t make her eye pop out like the museum pic guy.

Bed time 2

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So Dr. Cosby had to get on some hideous online website to submit the request for the adjustable bed. And when she put in the insurance carrier, it said they didn’t accept that insurance carrier. Even though our insurance carrier told us to use them! So, I have to call insurance and see what to do next. Like Dr. Cosby said, at least we started early!

Bed time

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Today we went to see Belinda’s PCP, Dr. Cosby. She is in a new location and it was very nice to see her! We talked with her about a prescription for an adjustable bed, so Belinda can have that in her dorm room. We already sent the requests to the college from the DC doctors, but the durable medical equipment request needs to come from her doctor in Oklahoma. I told her which one the insurance company told us to use, and she’s going to take care of it!

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 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!