Author Archives: Regina Garvie

Seasons

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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!!

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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

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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

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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

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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!

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.