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

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.

So today Ben called his former employer to ask if they would consider covering their part of the insurance premium and they said no. He asked if he could possibly use his PTO to allow him to stay an employee until Nov. 1, so he could still be considered an employee for insurance purposes. They said no and also informed him that his PTO would not be credited to his check, which someone told him it would be. So he loses 18 days of paid time off. He asked again for them to please tell him why he was fired and she refused. I told him we’d probably have to contact a lawyer if he really wanted to know, and even then they might not say. He said two other people from his department have also been fired or laid off or whatever.

Today he went to lunch with his co-workers, as a way to wish him good luck and say goodbye. At least the people he worked with are good.

We plan to take care of the cobra stuff tomorrow, after we get enough money in the bank. I scheduled all our eye exams and Belinda’s and my medical eye exams for November.

The person that was in the fender bender with Belinda in the Walmart parking lot a few weeks ago contacted me and told me how much the costs were. He’s trying to find all used stuff and he said he doesn’t want to involve insurance. I told him we’d probably have to because I wasn’t going to be able to pay for parts. I don’t even know if Belinda was at fault, so that’s also a consideration. From what I’ve looked at online, when accidents happen like that in parking lots, most people just take care of their own cars or use their own insurance. I don’t think we will be able to repair the damages to Belinda’s car.

Today I went to Chickasha and voted early. It took one hour and ten minutes from start to finish. I did not like how people with walkers and canes and a guy on crutches had to wait in line with everyone else. I think they should have a line for people who are in need. I wanted to give them all cuts but I didn’t know how the rest of the line would react, so I didn’t say anything. I’m glad that’s one more thing checked off before the DC trip.

In line outside.

In line inside.

While I was voting a diabetic man had a low sugar episode or something and an ambulance came and the EMTs worked on him in the voting room. We just walked around them to put our ballots in the machine. When people are needing medical attention after waiting in line for so long, you probably need to figure out an alternate way to do things.

So I didn’t really plan on telling everyone this, but Ben has lost his job. Such a shock after 28 years with the same company. They wouldn’t even tell him why.

I’m not worried because he’s really good at computer programming and I know he will get another. However, this comes at a rough time since his insurance will end on Oct. 31 and Belinda’s surgery is Nov. 5. We have information for COBRA insurance, to continue the current coverage, but that will be around $1800 a month for our family. That is quite a bit higher than we can feasibly pay at this time.

We need to find out how much COBRA would be just for Belinda, and then seek out an alternate short-time insurance option for the rest of us. I believe Belinda needs to stay on the insurance because of the copay and out-of-pocket max already having been met. I don’t know how much the surgery costs would be to us if we started over with temporary insurance, but I imagine it will be more than just insurance her through COBRA. It is frustrating that we did meet those costs, and I was looking forward to taking care of more medical things in the next two months, and now that’s in jeopardy.

I also contacted the National Organization for Rare Diseases to see if there is any assistance they can offer, but I just emailed them so nothing yet.

Bennett is looking into the insurance offered at his job to see if doing his separately through his work would be a less expensive option. Lenora will not want to get on Ben R’s (her husband) insurance because she already checked and the SSM Health network is not on it, which would mean she’d have to leave our beloved doctor and all her other doctors (gyn, therapist, etc) which she doesn’t want to do. That’s why we left her on ours when she married, because she can still stay on it for another year or so. I just feel like I can’t do that to her when she has made such good relationships with these doctors. When aetna and SSM Health started not playing nice a few years ago, all of us either cancelled appointments or paid out of pocket for two months, to stay with our providers until we could switch health care plans.

I also looked into SoonerCare, since without Ben’s job, we would definitely qualify to get it for Belinda, but their website says they prefer people stay in the state for healthcare needs. I think we might have a fight on our hands if we try to explain that Belinda needs to go out of state because she needs a pediatric surgeon to treat her rare disease, and not just an ENT.

However, our current insurance also prefers in state, but somehow the DC doctor’s office was able to prove that she needed to travel for the POEM procedure, so maybe that would work? The issue is, there are no pediatricians able to perform the POEM procedure in Oklahoma, but I think there are pediatric ENTs who can do the dilation. But have they done the dilation on a patient who has previously had a POEM? The DC doctors know how to keep the scar tissue to a minimum, since this affects her every day and will continue for the rest of her life. It’s important that the doctors do everything they can to ensure her esophagus is in the best condition it can be.

I have not talked about this publicly before because I don’t even want to consider it, but everything must be done to prevent end-stage achalasia. From the National Institute of Health: end-stage achalasia (ESA) is characterised by failed myotomy, massively dilated and tortuous oesophagus with nutritional deterioration due to progressive dysphagia and vomiting. In these subgroups of patients, oesophagectomy may be the last resort.

I am trusting God but just reading that description brings tears to my eyes and makes my stomach drop.

Please pray, I don’t know what to do.

A lady from the Children’s National surgery deapartment called this morning to update Belinda’s medical records in anticipation of the dilation procedure.

She asked about allergies, existing conditions, covid history, etc. She confirmed Belinda had Ehlers-Danlos and then asked if she also had POTS. I said no, as far as I know. I have been looking at finding an Ehlers-Danlos specialist who could examine her (and hopefully me) and give us some more info on what the diagnosis means for us and what other issues we could have or face in the future. But they’re in Tulsa so I just haven’t done it.

I really should since we recently learned we’ve met her co-pay and out-of-pocket for the year. We aren’t going to have to pay anything for Children’s National this time. I also have set up a wisdom tooth consultation and I need to get the Ehlers-Danlos eye exam set up. There’s not much year left!

Anyway, they’ll call us the Friday before the surgery to let us know what time.