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.

Hip hip hooray?

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I don’t think I have mentioned my own issue on here yet, and I need to do that. Because Belinda was diagnosed with Ehlers-Danlos, I was told that I probably had the same thing. Turns out I do, and I was officially diagnosed on April 17 with my internist, Bernadette Miller. She listened to me talk about the hip problems that I’ve had for probably 20 years. She sent me for an MRI on both hips and I had that on May 13. So on August 4, Belinda and I had appointments, but with the delivery of the bed to Alva and our birthdays and all the other stuff we had to do last week, we ended up requesting a virtual visit.

I now know that I have bilateral labral tears and fraying on both hips, although the right sounded worse when she described it. My chart says it is a Degenerative tear of acetabular labrum of the left hip and of the right hip, although they are not actually degenerative because it happened long ago and has just continued to give me trouble. She said it is a result of the Ehlers-Danlos tissue disorder. That makes sense, as it is a rare disease and no one could figure out what the problem was for so long. Anyway, she has sent an ambulatory referral to Orthopedic Surgery and an ambulatory referral to Physical Therapy. She said the surgeon might decide I need surgery but might also allow me to try PT and alternate therapies first. I have never had a real surgery and I am not thrilled with that idea. But a little while after she told me, I realized that surgery might mean that I would not hurt anymore, which sounds impossible because I’ve hurt for so, so long. But I also wonder if it would just tear again later, since it’s not like I’m going to stop having Ehlers-Danlos. It’s something to think about. I have not received a call from the Orthopedic Surgeon yet to schedule, so I think I’m supposed to call about that. I guess I’ll add that to the tomorrow list, and also appointments with the internist for us in November. And get the banking stuff to Mercy Medical Angels because I keep putting that off!

Having a rare disease is not for wimps!

Here’s a link that I’m going to look at later, when my stomach is ready to prepare for gross pictures of the insides of people.

Hip Problems and Ehlers-Danlos Syndrome

Back to School

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Today was Belinda’s first day of school at NWOSU. She didn’t take a picture of herself in the morning (and skipped by the people taking first-day photos of the students down by the student center) but she did take some in her dorm room for me. I asked for one with the buildings behind her and she went outside the dorm and took one but after she sent it she said it was too terrible and I was not to send it. It’s still surreal that we just left her in Alva yesterday. She is supposed to be here with me!

Sarah started school on Thursday and today was her first day of early band practice. I do not like getting up at 6:30 to make sure she’s up and going, and then driving her to school! Today I left my shoes upstairs and couldn’t find my flip flops and so I drove her barefoot. I also went to the Band Boosters meeting tonight, a thing my parents didn’t do but I am determined to do. Also found out that this year’s band trip is to Dallas because it’s a small year trip, but next year Universal is planned and that will be huge! Sarah is excited about Dallas because she doesn’t remember ever going. We took her to Six Flags but she was pretty small then.

Lenora is art teaching at a microschool and today was her second day. I asked her to take a photo of herself both times and she did not.

And Bennett is still working at the bank. And I am ready to get things to be a little bit slower. I felt ready to do some house cleaning today, which was very good. I’ve been going so fast I haven’t even considered that, really. I do have a pretty long to-do list with some medical things, but I’ll try to focus on that tomorrow.

I still need to finish the book I’m reading, and then I have two more library books to read, and I got my friend Evelyn Skye’s new book today and it looks fantastic! So I’ve got to speed up on that too.

Belinda is all grown up!

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So she is now 18. Hard to believe! She’s an adult, which now means that I no longer have automatic access to her medical records. That’s going to be a hassle to get through, but I know we can. Belinda said that she does not want to be in charge of appointments and things, understandable, since she’s about to start college. She’s signed a medical power of attorney for me, and also a HIPAA release form. We got the power of attorney printed at the Mustang Library and two of the librarians signed as witnesses, which was super nice. I made a few copies of it but now I really need to get online and upload it to all her doctors and pharmacies and insurance and all that. Sounds less than fun!

I spent a lot of that same week following up on the bed delivery. The home health company wanted to bring it to our house to show us how to do it, and then we could take it to Alva. I did not want to do that since the reason we selected this home health company is because they said they would have no issue taking it to Alva and setting it up there.

On Monday, August 4, Belinda and I both had appointments with the internist in Tulsa. With everything we had to do that week, we opted to do virtual appointments which isn’t ideal but it was better than driving to Tulsa. Belinda talked to the doctor about her headaches, which the doctor thinks are not migraines but instead two different types of headaches. She recommended a medication I’d taken before.

On Tuesday, August 5, we had one last appointment scheduled with her sweet pediatrician, but then we got so busy we forgot and missed it! Belinda was sad about that but we really just saw her last month, and I told Belinda she could tag along next time Sarah goes and say goodbye then, and that helped. That’s what Lenora had to do too, with Bennett, because I didn’t even realize at that point that their birthday would be a hard cut off. Their pediatric dentist kept them through college so I thought that was the norm.

Wednesday was our birthday! She wanted to go get birthday freebies so I took her to Mustang and Yukon. She got something from Starbucks and Ulta, and she and I both goth something from Sephora. We lunched at Chili’s and I got a free dessert, but we took it home and shared it later that week. We were too full! That night she had a few friends over and we had cake and ice cream. It was a nice evening.

On Friday, August 8, Belinda went to see her new general doctor. This doctor has been my trusted health partner for years and years, and now all three kids go to her. She has always been wonderful to me and my family and I’m very glad Belinda is in her capable hands. We discussed the prescription from the internist and Dr. Manning said that the medication could cause memory issues, so she wouldn’t recommend Belinda start taking it right when she’s about to go to college. Instead, she told us about some supplements that she wanted Belinda to try first. So we ordered those and hopefully that will help without negative side effects. Both girls went to the therapist later, so we spent about three hours at the clinic there. It was Sarah’s first time but Belinda has met with this therapist for several years. We convinced her to set up some zoom calls so she can continue with him, at least while she is starting out away from home for the first time. I’m hoping she keeps up after that, at least monthly or so, because he has been a great resource for both Lenora and Belinda. I know he truly cares about both of them.

On the evening of August 9, we all went and watched Sarah march with the high school band for the first time performing. She did so good and it was a lot of fun. The girls had snow cones and Bennett went down on the field so Sarah could teach him how to march and hold the clarinet. We got a lot of video and photos of that. Sarah really didn’t like band when she started band camp two weeks before but I think it’s starting to grow on her.

I kept texting home health and finally on Monday morning, they said they could meet us that day. We had to rush out of the house within 30 minutes and even then, we got there after they said they might get there, but they were there a little late too. We got permission for her to get into the dorms early and the guy, Ryan, was super nice. He got the bed all set up and we also took her refrigerator and microwave too. Her suitemate was there but she was in her room, and when Belinda finally knocked on the door to say hello, the suitemate had apparently left. Belinda and her suitemate each have their own private room and they share the outer area, which is the bathroom and a little entry area. We were surprised to see that they have Belinda in a handicap-accessible room, with grab bars and a permanent seat in the shower. Her disability doesn’t really require that, but I guess they didn’t have anyone who needed it more than her. Most girls in the dorm there have a roommate and then four suitemates, but for Belinda and her suitemate, it’s just the two of them. I hope they get along really well and become good friends!

Belinda had a work study interview at the college library at 2 p.m. that day, so we also went and did that. It was originally a zoom call but since we were in Alva she went in person. And later in the week they let her know she got the job! I’m really happy for her. My friends who worked at the library really seemed to enjoy it, and it was a great opportunity to study or take care of homework in the down time.

The girls got back to school haircuts on Wednesday, and now it’s Friday! Belinda wanted to finish moving in tomorrow and then I saw on facebook that there is a mandatory freshman orientation at 8:30 am tomorrow! We were planning to leave about 6 a.m. tomorrow, but now Belinda and I will leave at 5 a.m. and everyone else who is coming to help move can come later. She’ll be done with orientation about noon. She’ll also be able to turn in her FERPA form, so I can access her school records. I’m so glad I saw that post online! Belinda said she didn’t get an email about it. I’m wondering if it is because she already has 31 hours, because of her concurrent enrollment during her high school junior and senior year, but regardless, we know now. I think they would forgive her for missing but they also take a photo of the entire freshman class and I definitely want her in that picture!

She wants to come home again Saturday night, and then serve in the nursery at church before going back to Alva. She thought she would drive herself but I don’t want that. I want to go there and fuss over her before she stays there. So two Alva drives this weekend.

Oh, how I will miss her. She’s coming home weekends but I know it won’t be enough. It never is.

Well, I’m glad I got this updated. This blog has come in very handy when trying to remember facts and dates about Belinda’s medical history. Tomorrow we go to Alva.

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.

Sooner Select, Mercy Medical, and to-dos

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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!

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.

Seven fillings

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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.

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.