Virtual and Tulsa trips

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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.

Freshman Connection

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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!

Dentist

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Belinda went to a new dentist on Monday. Her pediatric dentist left his practice in November, and Belinda had never been to another dentist in her entire life. Since her insurance didn’t have that office in the network, we decided to go to a new dentist entirely. We chose one just over the river in Mustang. They’re all very nice and everything seemed fine…and then they said that she had TWELVE CAVITIES. Well, obviously I was very sus of that information, since Belinda is great about oral hygiene. She always brushes twice and day and flosses once a day. Now, I knew that her pediatric dentist had said she had two shadows that needed to be looked at, but now, four months later, there are TWELVE?? I asked a lot of questions but the dentist seemed positive. He also said that these had been there for at least two years. Um…no.

So on the way home I was talking about second opinions and that’s when Belinda wondered aloud if it could be from the achalasia, like acid going into her mouth. I hadn’t even thought of that. How awful.

I went home and got on the achalasia parents’ facebook group and some people there said their kids had the same issue. I still contacted insurance about a second opinion, just to be sure, and they’re supposed to get back to us early next week about that.

If it is acid, I’m hoping that pepcid that the allergist and internist want her to take will help with that. And I am thankful that we’re finding this out now, before things get worse. We’ll just have to do whatever it takes to protect her teeth.

Another thing to be thankful that it happened before college, and before she’s 18, so I can handle it all without extra difficulty.

Allergy Testing

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Belinda had her allergy testing today. She has been not taking her antihistamines in preparation for this, and she’s been having a rough time with spring allergies. So today we found out what gives her the most trouble. The worst of the worst turned out to be elm pollen, which is fun since our house is surrounded by elm trees.

The nurse pricked her skin with different allergens, making Belinda’s back match the grid on a chart. After that, she took the ones that did not have much affect and injected them into her arm with another grid pattern.

So the doctor is having her take two zyrtec every day, along with two pepcids. Both target different types of histamines. Now back to the internist in Tulsa!

Allergist

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Yesterday Belinda went to the allergist! This is Dr. U.G. and it was the first time she saw him. Everyone in the clinic was super nice. Dr. U.G. discussed her diagnoses with us and then ordered several tests. Then we went to the DLO place for a blood draw and a urine test. They also gave us some stuff to do a 24 hour urine catch, which I’d never heard of before. We are waiting until Monday since she will be home all that day. We have to keep it in the refrigerator(!!!) all(!!!) day!!!! I don’t know how I feel about that. My eyes are being opened to all kinds of new things.

He told her to stop taking the antihistamines for now, and in two weeks she will come back in for the actual allergy testing.

After the appointment and DLO testing, which was in Edmond, we took the Interstate north and went to Enid that way. She had a proctored test for Spanish at Northwestern that afternoon.

She said she was going to do schoolwork, but instead she fell asleep and slept for fourteen hours straight. I am so glad! Since she started working at the coffee shop she hasn’t gotten as much sleep as usual. She said that she estimated she had gotten about 25 hours of sleep in the last five days. It’s taking a toll on her too, she’s overwhelmed by even little things right now. I need to remember to treat her with kid gloves.

Ben still hasn’t found a job. It’s so difficult because he can’t even take a small job in the meantime, or Belinda might lose her Soonercare insurance. I know it’s his neurodivergence that makes it hard for him to really go after it with everything he’s got. He has a hard time with rejection, and putting yourself out there like this takes rejection.

Sarah is living with us now, through the end of the school year. I am so glad she is here.

Insurance

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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!

Allergy Testing Scheduled!

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Finally! After going through hoops for months, Belinda’s allergy testing has been scheduled for March 13 at a clinic in Edmond that specializes in allergies in people with Mast Cell Activation Syndrome. This is one more thing we need to get taken care of so everything is checked off medically before she starts college in Alva in the fall. She’ll also be 18 then, and so she will have to handle more of her medical care as an adult. I will miss having healthcare professionals talk to me without hesitation, since she’s still 17. If we had discovered her issues after August, it would have been so much harder. I thank God that she was diagnosed when she was!

After that, she will go back to the internist in Tulsa on April 17.

It’s hard to believe she will graduate in May. I need to get senior pictures scheduled and start thinking about graduation announcements.

I just realized that her entire high school career has included us dealing with rare disease health care. I pray that her college experience goes smoothly and that the diseases don’t keep her from meeting her goals!

So far so good

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I finished Chapter 5 today. Half was on Saturday night and half was today (Monday). I didn’t write last night. I told myself it was okay because it was Sunday but I didn’t know if I was lying to myself or not. But I did indeed do more tonight. It’s going slow but I think that is okay. Just writing something is what matters, at least for now.

Tomorrow is our homeschool co-op day and I also need to write an article for the newspaper. I didn’t give them anything last week. I was a little put out because they didn’t get an article in the week before, so I wasted my time because it had to go before the event it was covering. But I mostly pretty much forgot because Lenora was at the house and it was also super cold and we were battening down the hatches.

This week has had great weather. I went for a walk yesterday and took a few pictures of interesting things and put that on instagram. Today I only walked to the mailbox and back. I actually put shorts on because it was so warm. Wild that it was like three degrees less than a week ago.

If you don’t like the weather in Oklahoma, wait a minute and it’ll change. –Will Rogers

#amwriting once again

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Today I felt off, somehow. Maybe I’m getting sick, maybe it’s just mental/emotional. I have a hard time understanding the way I’m feeling most of the time. Lately it’s seemed like I’m just not doing anything or accomplishing much. Too much watching tv and taking care of the house, and not enough living. Part of that is probably due to the cold snap we are just now coming out of. I hadn’t left the house in days, due to bad roads and just wanting to stay at home and hibernate.

This morning I felt like I had to do something different. So I went to Newcastle and picked up a library book I had on hold for book club, then went to Mustang to the community center gym. I walked on the indoor track for a half hour or so, with no music, no audio book, no podcast. Just me and my thoughts. My brain doesn’t seem to think as well as it used to, but maybe if I just force it to work instead of placating it with distractions, it will get better. I talked to myself some as I walked, about my books, about my plans, about my dreams. I talked about my current novel and wasn’t thrilled when I had a hard time remembering my protagonists’ names. But they did come to me after a minute.

I came to the conclusion that I need to try to write at night again. I have been telling myself for years that I need to write in the mornings. That I need to do it first thing, while my mind is the freshest. But in all honesty, I’ve done the majority of my writing at night in the past. I would take care of the house, and the kids, and whatever else, and then in the evening I would finally get time to myself and I would sit and write. I haven’t wanted to do that for a long time for various reasons…but I think that time is past now. If writing last night before bed worked for me before, I think I owe it to myself to try it again.

My mind might not be early morning fresh, but mornings are too difficult. There’s the question of breakfast, and emptying the dishwasher, and taking care of Mom’s breakfast and a dozen other little things. Then I start thinking about the things I need to do during the day. But at night none of those things matter. I’m done with my work for the day an I can relax and enjoy my writing.

So that’s what I did tonight. It’s been a long time since I worked on this, so I read what I had written before, doing some small edits and tweaks. Then I went ahead and wrote a paragraph about what was going to happen in the next two chapters. Which is great, because I wasn’t sure what was going to happen next. Now I know, and I can think about that tonight and tomorrow, and then hopefully knock out some real words tomorrow evening.

I prayed before I began, asking for help, and after, thanking God for how well it went. I want this book to be like my first, which I still feel like came directly from God – from Him to my measly brain. The idea was not mine, and the writing just poured out. I wrote that novel in a month. I’m praying for another download from God. Just something that feels like it’s writing itself. The new chapter outlines felt like that, so I’m optimistic.

Allergist

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I called the allergist again today. They have gotten the referral, and they got the confirmation from insurance they needed today, hooray! Now the doctor will look at everything and see if he believes he will be the best doctor for her. I sure hope so because this has been such a struggle. I’m praying that God’s will be done, though, because I know that even if I’d like to have this doctor work out, if it’s not supposed to be then that’s the way it goes.

Anyway, the lady said they might get back with me today but probably early next week!