Mr and Mrs Awesome

There is fluid buildup in my abdomen putting pressure on my lung. All the weight I've been gaining since the first of the year was fluid buildup. The pulmonologist is doing more tests still, but they put me on lasix for the fluid buildup, and I've got a cardiology appt on the books.  Before all this, we planned a cruise with the in-laws for potato harvest break, and my PCP Dr Jones told us to go and have fun. I will have my oxygen, and we ordered a power scooter like the electric ones at grocery stores to use on the cruise! Haha that just made me think of wall-e! I hope they have holographic ordering figured out!  So we’re gonna go have a blast and deal with the other stuff when we get back!

Health update part 2 So now with the history, labs and 2 weeks of the continuous blood sugar monitor results, my specialist in Utah who is a nurse practitioner who also has her PhD in nutrition, and was a diabetes educator before opening her clinic (basically crazy credentials), she is pretty positive I've got an insulinoma.  So she and my dmba nurse case manager have been doing everything they could, speaking to each other, making tons of calls, to get me in as soon as possible with the right specialist.  Thursday morning- about the time I'm falling down the stairs, the above mentioned nurse case manager Jill, emailed me and told me that I can't go on vacation because my health problems are too dangerous to go anywhere without a pancreas workup for that insulinoma. I didn't fully read and understand the email till Friday at like 430. I tried calling the specialist recommended but they weren't open Fri.  So I emailed my nurse case manager and told her I'll rest ...

I somehow got a shadow ban on Facebook, so it looks like they're not showing my pay updates. Maybe this will work better.  Update part 1- I couldn't explain the last week to you in a text fb update or a blog if I tried. But it does feel like I should share cause it helps me, but then I feel like I'm being a social media whiner. David Mayfield suggested I make YouTube video updates. My health this week has literally changed hour to hour this. I've wanted to do YouTube updates but then have been scared people would think I want attention. But I'm learning so much through all this, that maybe I can help others who are stuck in the same place I've been for the last 12 years now.  But the finality of everything that happened this week ended up with me falling down the stairs while having low blood sugar, even while holding the rails. We were supposed to leave for our summer family vacation in like 5 hours after the fall. So we rescheduled our trip for the second time...

I am going to post what was going on as I wrote in my journal or FB posts, because I ven't kept the blog up well, while being sick this last decade Gratton 10 yrs ago today, I took you to the Zoo and you got so worn out you slept in the car!! It is a big deal because you hated being in the car! I love How You’re holding the juice box while asleep. I do remember how you liked to take out the straws and have me put them back in!

I was doing a FB post but then decided it was too long and whiney. So I am posting it here instead. Okay I forgot about one great thing that happened. Someone we know from church was doing research for me on who the best Pancreas Drs are. While doing this, his friend who is a Dr and treats pancreas patients agreed to at see me for a consultation (but made sure his friend and we knew that he couldn't promise anything). David found this out yesterday but this phone call came in while I was in pain and so of course I forgot. He reminded me tonight though, and I just remembered In the beginning of my illness, I sought out the best pancreas Drs, and went all over the country trying to get better. Later, once those pancreas Drs had me convinced that I was crazy and my pancreas was not an issue anymore, I stopped seeking answers about my pancreas and just worked on getting the complications caused by the pancreatitis fixed (SMA syndrome, MALS and Nutcracker syndrome). My psychiatrist ...

I gotta get back to cleaning/organizing, while I still feel well enough! I had this idea pop into my head though that I didn't want to forget to share! I had it while organizing craft stuff between cleaning my bathroom. Hair tie holders though- I've tried lots of ways for organizing them. Small elastic ones are the most frustrating to me. They get everywhere! I had found an extra carabiner and put it away earlier. Then I found 2 small elastic bands I needed to put away in the kids bathroom. I had the idea to put them onto my spare carabiner! It worked great! you can easliy get them off, and easily put them on, and it doesn't take up the prime bathroom drawer real estate!

This week, my nephew went out of town and so his girlfriend was really bored! She asked if she could take family photos of us, and I said yes. We always put it off because either David or I want to get more fit, or we just are busy, ect. The kids are growing so fast though, so we need to stop doing that! We don't look too bad in the pictures anyway, so there was no reason to wait. Better to do pictures now, get in better shape and then get MORE family pictures done. Grace is only in high school but she is good! Thank you Grace! She scouted out a location, and found a super good spot! There was a snow storm after she scouted it,and that made it a little slow going to get there but it was so worth it! It was also really cold! So we didn't do like individuals and stuff. So Grace suggested we do it in the Fall next year, and I agree. Though the snow background is so gorgeous maybe we'll do fall AND winter! After we got back to the car, Gratton was looking over the edge into the...

We did some ginger bread houses tonight. I'm so bad at getting the houses to actually stay together. Next year I'm buying the ones out together from Costco, that you just decorate!! Decorating them is super fun, but even more fun when decorating them didn't make the house collapse!  I mean we still had a good time, but there were some stressful moments!! Ginger bread houses are like sugar cookies. You get so excited to do them, and somehow forget about how much of a disaster the last time you tried was!! We'll still keep making sugar cookies and ginger bread houses though... I'm just going to make it much easier on ourselves next year! Buy the pre built houses at Costco right after Halloween, before they sell out!! Happy Holiday guys! I whine, and I wasn't the only one (at least not in my head haha)! But we had fun and laughed while we whined, and that's what matters!

 David had an idea for the elf on the shelf tonight... Oh boy did he have fun! Kahlan is going to freak out! I love that he's so involved in everything our kids care about! He's just such a good Dad. Haha he it's gonna have to put this back together tomorrow! Good thing he lives taking stuff apart and putting it back together 

I haven't seen a lot of opinion articles saying that we should throw our children's elf on the shelf in the trash in 2020. This is my reasoning for why I think that is the worst idea for your children.   My daughter is seven and she loves her elf on the shelf named Scarlett. Her elf has extended its family to include a stuffed Santa Claus named Santy as her husband, and a two of Kahlan's old toys as children they adopted.  Kahlan has wanted an elf on the shelf since before we could afford one. So a Santa Claus that I found at an outlet for $5 became her elf on the shelf a few years ago. Last year we could afford a real elf on the shelf, so we got one. When Scarlett appeared, Santee was also out as a decoration so Kahlan said oh my gosh he found a wife! Later during the season when her toys ended up near the elf on the shelf and Santee she suggested something that later ended up with me writing her a letter that they had adopted those as their children. The idea for her pr...

  I haven't posted updates since surgery cause I have been sick but knew everyone would be expecting news that I was all better. I myself was annoyed that I am not all better. I was right though. My liver is inflammed. I'm assuming it's the lupus and it's time to be back on those meds. They took me off them in Dec 2019 for kidney surgery, and then one of my Drs told me I probably never had lupus, so I didn't push getting back on the lupus meds after surgery. My Utah lupus Dr dropped me anyways at the end of Dec when I got Medicare. But maybe he's wrong. Lupus can cause liver issues. I am still waiting for the Dr who ran the tests to call and say what I should do about the liver numbers. I only saw them cause he finally checked them, and so then the results get released to the patient on the patient portal. My experience has given me reason to bet they call and say everything is good, if they do call. Hopefully I am wrong. Now that I'm back in Idaho though, I...

Lots has changed recently, but we're getting through it. The kids are doing online school from home at least until May 1st. David is working from home as well. With myself being in the category that would have complications, we're staying away from all potential exposures. My health took an unfortunate turn. I started being unable to eat or drink without extreme pain. Then I started not being able to keep the food and drink down at all. I knew I was getting dehydrated and felt weak. My Dr did labs and then ordered home iv treatments and an ng tube placed for enteral feeding. Being attached to the iv and ng tube all day has been pretty hard. It's kinda like you can't ignore you're sick (which is my typical attitude) when you need and machines to help with simple things like nutrition. I vented to my amazing sister in law though today, got my crying out and moved on with my day! It ended up not being so bad. Gratton gets his online school work ...

I'm very annoyed today. I've been in so much kidney pain today that I've been in bed almost all day. So i get frustrated and get up and do something and then the pain comes back and i go back to bed. Just had a panic attack about being in bed too much. Took my anxiety meds though and they should soon start working. Being sick is stupid. I hate it so much.  It's frustrating because how this started- it was just pregnancy gallstones. That's it! And the Drs missed it. And so I got pancreatitis, and they missed that too. Until my sister in law Kirstie finally took me to the ER ( she forced me) and I forcibly they do labs or SOMETHING, when I could tell the ER was about to write me off again. The ER notes show that he did indeed think I was exaggerating at first.  After I insisted he do something, like at least land, the Dr noticed my stomach was jaundiced. So he did the right labs and found my pancreatitis. Good thing for the labs cause even then the radiologist said th...

I got cast to be an extra for the beginning credits of the TV show Studio C for the next 2 seasons. That's how i hurt myself. 40 people is too many on an uneven skating rink, while looking out for the camera man! I even fell the least out of everyone! I only fell once! Just happened to fall the wrong way. Caught myself with my arms behind my back. Hyperextension plus too much pressure can apparently make you sprain the ligaments holding your clavicles to your sternum. Only freaking me would do that... they can't even find a Dr in Utah who treats that injury! So hopefully 9wks of rest will do it they say, and follow up with my pcp. 9 wks of not lifting and using my arms... I'm on day 3 and already failing at that. Luckily the pain puts me back in my place and back to bed. Just shaking my head here...

The kids have a snow day today. I made cream of wheat for them. It's something I remember my Mom making me on her health kicks, that I actually didn't hate! So Kahlan and I made it, because she has to help cook everything, since she wants to be a chef. Sadly, I don't have much to teach her! Anyways, we made cream of wheat and no matter how much sugar I added, my kids do not like it! So there's one thing I don't have to make for them. I did it perfectly too, not a single bump! Gratton was very concerned about my feelings though, and pretended to like it until I left the table 😂! I went upstairs to get my creon ( pancreatic enzymes, so I can eat) and heard them talking about not liking it. When I came back and told them I heard them talking, Gratton said- sorry, I didn't mean to hurt your feelings... I explained that it is okay to like different things, and we don't all like the same things! I'm glad to have such a sensitive son, who thinks a...

Well it happened. Enough snow fell for the kids and Dads to play in! Gratton is wearing my boots, because I haven't bought him any yet for the season. Luckily his feet have grown enough that at 7 yrs old, my boots are barely big on him. The neighbors invited us to play in the snow, so they're outside building a snow man. I'll join in next time, when I have boots for me AND Gratton.

Kahlan is still too young to be in the Ballet West's Nutcracker, so I took her to go see it instead! It was our first Mommy daughter date, and we had a great time! We went to the Saturday morning show, because I knew that was the one where nobody minded kids talking and screaming at exciting parts! Glad I did, because she had lots of questions and comments. They had a few firework type special effects, and all the kids got SO excited!  I told Kahlan which parts I was in as a dancer, and it was cute how impressed she was. My favorite comment though, was when the lead Arabian ballerina started dancing, and she made a sound effect like "Ooh la la!" The actual sound effect she made was funnier, but I can't remember exactly what she said! The meaning though was clear- "she's a pretty, sexy ballerina!" Ballet West's Arabian dance actually was my favorite, out of all the other versions I have ever seen! Gratton said that when Kahlan is actually in th...

Yesterday we went to the beach, as a family. The last time we went, I stayed home to avoid getting sicker. This time I wanted to be a part of the memories, and I am glad I went. I set up my beach tent so I wouldn't be in the sun all day, but did spend some time in the water with my hubby and the kids. Today of course, I'm paying for it, but it feels worth it for the memories we made. Took some steroids, to try to stop the pancreatitis flare that's starting, and soaking in the bath for kidney pain. But we lupus warriors need to remember to live, at least once in a while. Chances are I was going to be in pain the today anyways!

I haven't done a post in eight months ago, but it is time. I haven't posted because life has been really really hard. Not that good things haven't happened as well. But every time something good happens, something with my health changes, or we have some big upheaval in our life and I use all the strength I've got to barely get through it for ONE MORE FREAKING DAY!! But I'm coping with things better, so I am going to get back to blogging. I'm too sick to work, so I have the time, if not always the energy :-) So The last post was about Gratton's first day of first day. Well when he finishes this year, he will start next year as a fourth grader! That was definitely not how I saw this year going for him academically.  The parent teacher conference with his first grade teacher in Idaho did not exactly go well. He was doing great academically and socially of course, but his teacher literally said "I just don't know what to do with Gratton." H...

Gratton's first day of first grade is today! Kindergarten was only half day, and he didn't like that they didn't get snack time or lunch! He is happy he will finally be able to eat lunch at school now. Last night he had his back to school night, and he got to see his classroom and meet his teacher. She let them pick out a plush that would be their friend for the first week, and then they will be able to take it home forever. Gratton thought that was just grand, and he picked a little penguin. The teacher gave him a get to know you form to fill out, and he went right to a desk to fill it out. His teacher was happy he went to do it right away. David signed up to help out with math once a week in the class. I also signed up to be a class parent too. I volunteered in Gratton's Kindergarten class, and he really liked it. He rode the bus, and I am happy to announce that he was not late! He was very stressed out about that, even though we told him that if he was late we w...