Seasons

Crossposted from my livejournal.

Scripture quotations are from The ESV® Bible (The Holy Bible, English Standard Version®), © 2001 by Crossway, a publishing ministry of Good News Publishers. Used by permission. All rights reserved.

It’s Tuesday, October 14, and although I continue to plan to write each day, it has not become the habit I hoped for yet. I suppose it’s better to not make it too regular, for me, lest I miss a day and then give up totally. I would like to get on a better schedule but it is all right.

Today I forgot to turn on my alarm and got Sarah to school right at 8 a.m. She’s going on a band trip today, to the OSSAA Marching Band competition in Elgin. Karlene and I are going too, but not until this afternoon. I think I should shower before we go and I’m also trying to clean the house some before Belinda comes home tomorrow for fall break. I am so happy she will be here for a few days! I want everything to be somewhat neat so it’s easy to cook her favorites and keep the house reasonably clean. I want her to really enjoy her long weekend!

I also have to get my newspaper stories done for Jayson this morning, and check to see what I sent him before and make sure everything is getting in there. I am not great about that. I need to find a way to keep track of that better.

Mom just got up an hour earlier than normal and made me feel her clothes to see if they’re wet. Then she grilled me on whether I’m going anywhere today and I lied and said I wasn’t, and she went back to bed. Now I’m angry. I’m tired of this never ending loop. I don’t want to be mad first thing in the morning. It makes the whole day less good. But I don’t know how to fix that. I read my Bible as soon as I got home from taking Sarah to school. I am trying to do better and be better. I also looked at my phone a little but I did read and think about what I was reading. I was sitting on the porch. It was somewhat nice but it still needs some work out there. Everything always needs work, doesn’t it?

So I read Psalm 1. This is what it says:

Blessed is the man who walks not in the counsel of the wicked, nor stands in the way of sinners, nor sits in the seat of scoffers; but his delight is in the law of the LORD, and on his law he meditates day and night. He is like a tree planted by streams of water that yields its fruit in its season, and its leaf does not wither. In all that he does, he prospers. The wicked are not so, but are like chaff that the wind drives away. Therefore the wicked will not stand in the judgment, nor sinners in the congregation of the righteous; for the LORD knows the way of the righteous, but the way of the wicked will perish.

I read this through several times and I liked the idea of being like a tree planted by streams of water. That’s when I saw that it says the tree yields its fruit in its season. In its season. Like how in everything there is a season.

I feel like I am not yielding fruit very well right now. For a long time, I felt like I was on track and the Fruits of the Spirit were evident in my everyday life, without much effort on my part. I didn’t want to be proud of that, but I did feel like I could see that the fruits of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control were very present in my life. I honestly delighted in it, running through each one in my mind and thinking about how somehow, God was creating all those things, effortlessly, in me. But now, I don’t feel it. I keep going through the motions but apparently the added stressors in my life have the ability to easily take me to a place where that fruit isn’t readily apparent. Oh, they are there sometimes, but recently, and increasingly, I have felt mad, angry, frustrated, impatient, mean, short-tempered, untrustworthy, harsh, and chaotic. I do not know how to stop being like that because I do not feel I will stop doing what is bringing these on. So that makes me feel trapped, which adds hopelessness to the situation.

Anyway. The part about in its season spoke to me this morning. A tree is considered fruitful when it produces fruit in its season. A season isn’t all the time.

For everything there is a season, and a time for every matter under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; a time to keep, and a time to cast away; a time to tear, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time for war, and a time for peace.

This does not mean that I’m going to just throw my hands in the air and give up on having the Fruits of the Spirit at this time of my life. I believe that we are to want to please God, and living a life that way is pleasing to God. What I am not going to do is beat myself up or stress myself out just because I am struggling through a difficult situation. This is for a season. This is not forever. And if I am not producing the fruit I believe I should be producing while I am walking what basically feels like the valley of the shadow of death, that does not mean that I am a failure. God is with me, and his rod and staff comforts me.

I was not created to produce fruit all the time, without ceasing, 24/7, 365, for a lifetime. I will keep praying, keep reading, keep praising, keep singing through all of this, and when this season ends I will still be standing by that stream of water, ready to bear fruit for the King.

I pray that even the meager offerings I am producing during this season will be of some benefit for his kingdom, and that one day I will be able to be in that beautiful place again where I felt him in my every moment, and it showed in my life. Until then, I am thankful to be right where I am.

Great News!!

I just talked to Children’s National and Soonercare has approved Belinda’s out-of-state procedure in December! I thought it would be a big struggle but the lovely lady at Children’s said she applied on Sept. 18 and they asked for additional material, then approved on Sept. 19!

Procedure covered by Soonercare ✅
Flight covered by Mercy Medical Angels ✅
Hotel and Ground Transportation covered by the National Organization of Rare Diseases ✅

What a relief! I am so thankful that everything is ready to go for the procedure!

Insurance

The state needed me to send uploaded documents for Belinda’s work study, but I didn’t get that from Belinda until just a few days ago, since work study is only paid once a month and we had to wait for that. In the meantime, they flagged our account and now her coverage is set to stop at the end of the day. However, they said that if she has an appointment, call 48 hours in advance and they would look at the document right away and approve it. Or we can just ask the doctor to wait and file it when it’s back on. The coverage will still pay those back things when it comes back. She doesn’t have an appointment until the allergy doc on October 17, so hopefully they’ll have it done by then.

Family Day

We had a super busy weekend over the last three days. Friday was Tuttle homecoming, so we went to the parade and then game afterward to watch Sarah and the band. Saturday was an all-day band competition, but Karlene took Sarah to that because we left the house around 6 am to go to Family Day at Northwestern. It was a nice day. We left before the game and Belinda and I went to the band finals while everyone else went home. I fell down once, tripping in a hole (I also fell on the bleachers two weeks ago on the Tuttle vs Noble football game. I am such a mess!)

Then Sunday was the final performance of Murder’s in the Heir at the theater in Tuttle. Sarah had a small nonspeaking part, since she had to miss two performances and several rehearsals. It was really nice of the directors to make a spot for her. We all attended and she did a good job. The show was really fun!

Our cat Nutmeg is wearing a cone. She had an eye infection and it just wasn’t healing, despite the drops we got from the vet. Turns out she was messing with it and scratching it herself with her front paw, making it worse. So now she’s in a cone and she’s not happy with it. The eye still looks bad and it’s been three days. I’m not sure when I’m supposed to call the vet again.

I need to write some stories for the newspaper. I didn’t do any last week – I was so busy I actually forgot until it was too late. I know I need to do some now and I suppose I’m kind of putting it off.

Karlene just got here with Mom’s prescriptions, so that’s all I’m writing.

Emergency

Yesterday Belinda went to the emergency room – but she meant to go to urgent care and it really could have been treated without emergency services.

She texted me during the day and said that her stomach was hurting. Turns out she took some matcha tea in a little bottle to her classes but didn’t actually drink it until she got to work at the library, three hours later, and there was milk in it. She said it was warm in her bag the entire time.

Her stomach hurt so bad that she finally left work early, and on the walk back to the dorm she decided she needed medical help. I saw online that Share Medical Center (the hospital in Alva) had an urgent care clinic and they were still open, so I sent her that way. Well, she went in the wrong door and ended up in the emergency room instead of the urgent care, so they took her blood and sent her out with a prescription and advice, I guess. She called me once, to ask a question, and I wanted her to put me on speaker so I could listen in, but before I could say so the doctor came in and she hung up. I was a little worried but she handled everything herself and I’m honestly very proud of her. She’s been used to taking a back seat when it comes to her medical care and I think this was a good learning experience. She went to Holder Drug downtown and picked up her prescription.

I doubt I would have been as cheery about all this had Belinda been on private insurance instead of Soonercare. Next time she knows to make sure it is urgent care!

Hip hip hooray?

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

Belinda is all grown up!

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.

Sooner Select, Mercy Medical, and to-dos

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!

Seven fillings

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.

Bills

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!