So I have been working with Mercy Medical Angels, who provide flights for those with medical needs. It’s based on income, and they needed our tax return. I sent that and it said we had too much income, but of course we don’t anymore, so then I needed to send them the proof of Ben’s job loss, which I did. Now they want two months of bank statements. I can do that but I’m not 100 percent sure where they are, so I’ve got to go through some stuff. I did ask the credit union if they could email it to me, and it was going to cost six dollars, and so I decided I’d try to find it myself on principle. Although after I look for a while, my indignation on being charged may smooth out.

Another thing I’ve been doing is looking into ways Belinda can receive some sort of disability benefits. This is tricky because although I want her to have help with expenses, I also don’t know if she’s truly a good candidate. I want to find out if she would be eligible for Medicaid during college and after, even if she works. I’m not sure that’s how it works, but when we were having to pay out of pocket expenses while she was under Ben’s old insurance, we paid more than $5,000 in a year for her care. It was the same the year before that, when we started trying to figure everything out. Surely there is a way to receive help so she won’t be financially crippled by her rare condition for the rest of her life. I contacted a very nice lady at something called Sooner SUCCESS. From their website: Sooner SUCCESS collaborates closely with both public and private sectors with the goal to promote a comprehensive, coordinated system of health, social and educational services for Oklahoma children and youth with special healthcare needs in their local community. I asked her about TEFRA, and she has sent me some information, but I’m not sure it applies. Another quote, from a state website: TEFRA (Tax Equity and Fiscal Responsibility Act of 1982) gives states the option to make Medicaid (SoonerCare in Oklahoma) benefits available to children with physical or mental disabilities who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent’s income or resources. This option allows children who are eligible for institutional services to be cared for in their homes. So Belinda is on Medicaid now, because we are very low income at the moment. But when Ben gets a job, she won’t be eligible for Medicaid. I hoped TEFRA would be the answer, at least until she turns 20, but Belinda doesn’t really seem to be someone who be eligible for institutional services.

I’m guessing she’s going to end up falling through the cracks, and we’re going to dedicate a large amount of any future income to her health care after our income gets back to a non-poverty level. I’m still going to keep researching. At least after the show this weekend. We have another weekend of shows, but I think I will feel less obsessed with perfecting my lines at that point.

I have quite a few things I’m going to need to follow up on for Belinda. It’s been quite a busy couple of weeks, since the show I’m in, Once Upon A Mattress, opened last night. I did okay and only missed one sentence of my biggest monologue, and it didn’t really change anything. I’m going to go over my lines again in a bit, but first I want to make sure I don’t forget the things that are to come.

– Follow up with the HR rep to make sure there’s not another EOB I need to send;
– Find out if our credit score can be repaired once the bill issue is settled;
– Belinda’s dental cleaning on August 7;
– Start finding out what we need to do so I can continue accessing her medical records;
– Find out if Belinda’s bed can be delivered early and what that entails;
– See if Belinda can get chiropractic care for her headaches with the internist’s referral;
– Send two months of bank statements for Mercy Medical Angels for Belinda’s flight;
– Keep looking into what medical benefits Belinda may receive in the future.

And for fun, here’s some pictures of me with Belinda and Lenora after the show last night!

Belinda had two dental appointments, July 7 and July 15, to get the seven fillings taken care of, and she did great. One of the cavities concerned the dentist because it was deeper than he thought, and he said it might end up needing a root canal, yikes. I told Belinda she should really stick with water and ditch the drinks that are changing the pH in her mouth!

So this week she started feeling pain in that tooth while she was at work, and told me that it was pretty bad. So we got a quick appointment for her, and she went in on the 24th. Turns out the filling just needed to be shaped down a bit, and as soon as it was done, she said it was already feeling better. So that was great news.

So now Belinda has a cleaning set for August 7, one day after her birthday, sniff. She’ll be an adult then. She said she wants me to still take care of her medical stuff while she transitions into that, so I suppose she’ll have to sign documents allowing that. I’m glad it will be done before college starts, and then we can try to get the next one scheduled on a school break.

We got bills from two of Belinda’s doctors this week, the internist and the podiatrist, for BIG money amounts. Both claims were rejected by Humana Healthy Horizons (Soonercare) because our account shows we have another primary insurance. Again.

Yes, Healthcare Highways is once again on our records. The insurance that we lost with Ben’s job in October (after spending thousands on COBRA for November, at least). Ben’s former HR doesn’t understand why it keeps happening. The company dropped Healthcare Highways at the end of 2024. Anyway, this makes it hard for Belinda to go to the doctor or get prescriptions.

So I called Humana Healthcare Highways and they’re going to look into it. That was two weeks ago. I called again Friday and they said to call back next week. Neat!

We’re trying to get insurance to provide an adjustable bed for Belinda for college, since she can’t sleep flat. Her doctor has written a prescription and Humana Healthy Horizons gave me a list of Durable Medical Equipment providers, so when her pediatrician asked for the place we wanted to use, I chose the one in Enid off the list, since I figured that was closest to Alva. So the doctor had to go through this clunky website to try to submit the prescription, only to find out they don’t take Humana Healthy Horizons anyway.

So I just gave the whole list to her doctor and told her to call the one she liked working with best.

Hope it gets worked out, she doesn’t do well sleeping on the wedge. She slides off and wakes up with her throat hurting from the acid. I’m glad we started working on this fairly early.

Today Belinda and I went to the podiatrist to discuss her foot pain. I believe her arches need more support due to the Ehlers-Danlost, and the podiatrist agreed. He talked to us about different types of custom arch supports and we are going with one that she can wear in all her cute shoes! She got her feet measured and the arch supports should be ready in a few weeks.

Belinda had to work this morning. Somehow she didn’t see the internist visit in Tulsa when she gave her boss her schedule for the week. I also had an appointment to see the internist for the first time. We attempted to change the appointments but they couldn’t do it until months from now, so we realized that Belinda could do a virtual visit. I could not since it was my first visit.

Ben drove me to Tulsa and we got to the doctor in time to sit in on Belinda’s virtual visit with the doctor. It was her first time doing virtual with this system and she did great! Belinda updated the doctor on how she’s doing and how the medications are helping with the allergies. It sounds like everything is going well. After she logged off, I had an exam for myself. She said that I also have Ehlers-Danlos and MCAS, which explains the pains and things I’ve had for decades. It was so good to be listened to and heard.

Belinda has one more appointment with this doctor just before she goes to college in August. I also want to set up an appointment for her with her pediatrician, since that will end when she is 18.

Time is going so fast all of a sudden.

Belinda, Ben and I went to Alva today to do more things for Belinda’s upcoming college year. We went to all of her classes, just to let her see where they were. We also did some things at the financial aid office and the housing office. Everyone is always so nice and helpful.

We went to the student accommodations office to find out what we need to do to have Belinda in an adjustable bed in the dorms. They said we needed a letter from her doctor. I emailed the clinic in DC and the lovely Jill sent that letter back to us super quick! The letter outlines how the adjustable bed is necessary for her health. They also added a paragraph for Belinda’s insurance, in an attempt to get the insurance to pay for or help pay for the bed. I need to contact them soon and cross our fingers!

I’m going to miss her so much when she’s in Alva, but knowing we’ve taken care of everything ahead of time makes me feel better. More things will come up, of course, but I’m hoping this helps her to focus on schoolwork and on having fun!

Children’s National is sending us bills for Belinda’s surgery and visits, and they are getting more persistent. You may recall that we paid $2000 to continue the COBRA insurance for November so all this should be covered.

Ben has contacted the HR department at his former employer about this, yet the bill keeps coming. I suppose I need to contact the billing department at the hospital and see if there is anything they can do.

I do not know if this problem is the fault of CompSource or the fault of Healthcare Highways and I generally don’t list them by name but this is a real failure on their part. We followed the rules, and paid, and did what we were supposed to do and now it’s still hanging over our heads.

I notice they did accept our COBRA payment without problem!