Kahlan- "WHAT THE?!"
Thursday, November 26, 2015
Kahlan- "WHAT THE?!"
Monday, November 23, 2015
Today, Jonny pointed out an area on the ceiling that we needed to paint. Kahlan said it was disgusting, and Gratton said, "No, its a masterpiece! It looks like a cow that got pooped on, and is missing it's right leg." It was a very gross, and yet specific description." Out of the two of our kids, I think Kahlan might be the one with an eye for art...
Thursday, November 12, 2015
Hypothesis for why God would make me sick.
Sometimes I've gotten frustrated, because I've tried to follow the commandments and the golden rule my entire life, and then I have this horrible disease appear, which has no cure.
Not only is it incurable, but so unknown that it's not like where if you tell someone you have cancer, they understand the severity of it and they're jumping out of their seats to help you. The people who do know lupus, they usually have a sister or friend who was diagnosed, but it only affected their skin, and they were able to live a normal life.
There are several types of lupus. The skin type is caked called discoid lupus. I have the rarest, and most serious kind, with the highest mortality rate.
Furthermore, within that rare subset of the disease, I have one of the most serious secondary diseases systemic lupus can cause. It's a blood disease called Antiphospholipid antibody syndrome (APS), and is also very rare.
Patients who have APS have problems with their blood clotting process. The antibodies in their bodies (lupus antibodies in my case) kill different parts of their blood, and that causes the clots. It also causes really bad headaches that don't respond to much in terms of medicine. A very, very small percentage of people with APS have the type where the antibodies attack not only their blood, but also their central nervous system. And yup I won the lottery again, and also fall into this rare portion of patients.
Having my nervous system affected has been one of the harder things to deal with. It causes chorea (uncontrollable jerking of limbs and facial movements), and confusion (like being in the middle of doing something and forgetting completely why you're there and what you're doing). It makes you forget words for things, words you've known your whole life, like water, fridge, grandmother, etc. Your limbs go numb without any notice. I've fallen while walking across a room, because suddenly my leg is asleep. And sometimes my speech slurs or I stutter, even though I've never had a speech impediment.
In my acting and voice lessons, growing up, I was always the example for annunciation, speaking clearly. I loved acting, and because I had such good memorization skills, I never had to try as hard in acting or school. I was reading by 3 ½ and to this day my parents say they don't know how I learned, and that as far as they could tell I taught myself. With both my parents working, and being babysat by my deaf grandparents, it's the only explanation. My four year old son is also reading chapter books by himself, and I did not teach him. I only discovered how well he could read when I brought home sight word books, to begin teaching him. Instead, he just started reading to my husband and I.
My point of the above isn't to brag, but to help you understand what my life was like before getting sick. My mom didn't ask me to be tested for the Gate classes for gifted kids, like some parents. There were 8 of us kids, and getting us to school with hw done was as much time as they had to invest, with both of them working full time. My teachers approached her about taking the gate test, and said they were amazed at how well I did on it. I wasn't excited the state's standardized tests unless I got above 97%. This happened often though, so I loved testing time, and didn't understand why some kids didn't.
I did well in college too, until I started showing my first symptoms. I loved chemistry, and wanted to be a Dr. I did finish my undergraduate degree in Biology, with decent grades considering that I was hospitalized a lot during the last 2 years, and always held a full-time job at the hospital, to pay for living and stay motivated about becoming a surgeon.
When my health got too bad, as graduation approached, I knew that I couldn't handle the constant stress of medical school. But I was not going to stop my education, so I researched other careers. It still hadn't occurred to me that my illness could not only last, but get worse.
At this time, I was working on campus part time as a health professionals advisor in the Biology dept at BYUI, so I was familiar with what could honestly be done (or mostly not done) with my very tough degree in Biology. Since as a freshman I had been interested in law, I looked into that again. But my critical thinking skills were already suffering at that point, and my LSAT practice tests showed that I could no longer both answer the logic questions quickly and correctly. So I passed there, looked into lots of things, and settled on an MBA in health-care administration. I'm a semester away from finishing, but had to withdraw in January of this year, because I was too sick because of both the disease itself, and the chemo drugs being used to treat my disease. And yes, when you're on the same mg dosage as cancer pts, you get sick too. I finished those meds in March though because my liver started being affected. My body couldn't handle it anymore. I had been on those meds for almost 2 years.
I don't know if I'll ever be well enough to finish my MBA, but I remain hopeful. I do have bouts of time where my mind is clear (like now), where I feel like I could do another semester. I was going to restart it this month, but couldn't get the funding to work out. This is the first time in my academic career where I just couldn't find the money, not even in loans. And it always worked out before, some way or another. Now I strongly believe that it didn't work out because God knew another flare up was coming, and that with the determination I was feeling at that time, if I was in school again, I'd finish even if it killed me. My tenacity can be one of my biggest weaknesses.
An example of my stubborn determination. Right now I've got a splitting headache, and I KNOW I need sleep. It's 1:45 am and both kids are sleeping, but my mind feels sharp, and I got an impression of things that I knew I'd fidget if I didn't write it now. I don't even have a computer with me, because I'm visiting my cousin in Utah, so I'm using Google Drive on my smartphone to write this entry.
The aforementioned impression- an answer to a question that has made me feel angry. Angry at God, angry at fate, angry at myself for being upset at God.
The question- Why did God make me so sick, when I've worked so hard my entire life to be good? I didn't have an easy childhood, but I stayed strong anyways. Strong in life, in my religion and beliefs, and just to try to set a good example for friends and family. I never drank alcohol, not even one beer. I knew we had addiction problems in my family, and I kept telling myself- if you drink even one sip, you can't tell your kids you never drank alcohol. I wanted to set a good example for clean living before they were even here. Once they were here, circumstances led to me being needed to raise my teenage siblings. I took it on without a second thought, except to make sure my husband was okay with it. These last 7 years raising different siblings has been so hard and so rewarding, and I know we've been so blessed because of it. So I ask myself in the dark times of pancreatitis pain, “I did everything God asked, and even took in siblings. They constantly tell me how grateful they are. Is that not enough to have my illness at least sent into remission??” Sometimes I've wondered- if I had just been a little more carefree in my life, had a little more of the “fun” that my friends had, would God not have made me sick? Could my trial have been something else? Something that would've allowed me to be the Dr I wanted? Or even just a better stay at home mom, with the energy to do more, even if I could still only have 2 kids? In the really dark painful sick times, I've wondered if I'd spent more time in the bishop's office repenting and admitting sins, would I spend less time in the Dr's office? I don't know why those thoughts come sometimes. I try pushing them away because I'm proud of every decision I've made in my life. I also know that I'm nowhere near the trials that Job (in the bible) went through, and he didn't have these thoughts until he was much worse off. But I'm human and I'm Weak too.
I don't remember exactly when the first time I asked myself this question was. I think it was when the kidney problems started, almost a year ago. I've prayed about it, meditated on it, and tonight I feel like maybe I'm beginning to understand. The thought that vans into my head was something like this, of this isn't exactly it (brain fog is beginning)- I think maybe God gives trials like this to good people, to not only test that individual, but to set a good example to those watching them suffer. I use Job's story as my example of how to keep my faith. If he never went through that, I wouldn't have his example to keep me strong. And people in my position who don't stay strong- they get addicted to pain medicine to start with. Pancreatitis is a disease that the Dr's don't skimp on the drugs. While definitely watching your safety and well being, and trying to help you not get addicted, they understand that pancreatitis is so painful that those of us who have gone through both labor and pancreatitis flares would prefer giving birth every year compared to pancreatitis.
I want to stay strong though, and here mentally for my kids, so I avoid the pain meds at all costs. I also still don't drink, even though most pancreatitis pts do (which is usually hoe they initially got it), because it helps with the constant pain. So, if job hadn't stayed strong, and his story available to be my example, would I be trying so hard to keep being a good mother, wife, friend, and just outstation in general? Or would I do what seems like it'd be so much easier, and just give in to the drugs (esp since they're legal) and other options which seem easier? Would I just keep staying mad at God, and stop going to church all together and not teach my kids the morals which have guided my life?
I'm not sure of the answer of what I'd do without Job's example, because I read the bible, so I have that story to think about. But how many people today honestly read the bible? Even people who go to church don't necessarily read the bible. I did because I decided before going to college that I'd read all of the scriptures, front to back, to decide if i really believed. If I didn't believe after reading the bible and book or Mormon, I was gonna love up my college years, join an awesome sorority, and have fun. Most people don't read the bible though, so their heroes and inspiration come from people they know in real life.
So…. And I'm not saying this is the reason. It's just an understanding that came to me personally, which I wanted to write down before I forget, and in case I do leave my children too soon.
-Maybe God gave me these specific illnesses so that people could see how I handle them, and use it as an example in their lives. My friends and my friends parents know about the things I've gone through in my life, and they know I try to be a good person. It's how I have even more non religious friends than religious ones. They also know about the struggles I'm going through with my health, though maybe not how serious it is. Some of them have told me that I'm an inspiration to them, and that it reminds them to be grateful in life when they feel like life sucks. Some have said, I think of you and realize it could be worse.
My whole life, though I never put it together until just now, I've wanted to be a good example. I guess I just didn't realize how powerful of an example I could be by taking the challenges I'm thrown and being strong, even when I win the lottery for rare, untreatable diseases. I didn't even name a few of them, including the kidney problem that only a couple hundred people worldwide have been diagnosed with. And he repeated the tests a lot to make sure.
I'm still not giving into my diseases. I figure if the placebo effect is real, and it is, then I can use my energy and positive thinking to try willing my body to heal itself. So far, it hasn't helped physically, but emotionally it has. And I'm going to keep fighting to the end, which will hopefully be in my 80’s during my sleep, the day after I go skydiving for the last time. Because God, if you're listening, which I know you always are- I'll keep being a good example if you let me go into remission and get healthy again. And I'll tell everyone whose grace it came though. But if not, I'll tell them about you anyways, because I do know you're real, and you love all your children, even when we don't act very deserving…
Well I'm going to go to bed now. It's 2:42 am and I really should get some rest. My kidneys and pancreas are both causing intense pain this week, and I'm trying not to even take my pain pills once a day, so I don't become moody to my kids and my cousins I'm visiting. Can't fight without rest. Goodnight.
Saturday, November 7, 2015
Wednesday, October 21, 2015
Sunday, October 18, 2015
Tuesday, July 14, 2015
Wedding dress alterations are fun. Up to my eyeballs in tulle! Have to do it while kahlan is sleeping though, because she is just too excited about this wedding dress. She wanted to wear it so bad! I wouldn't let her touch this one, but I let her wear my wedding dress. I'll have to post the pics David and i took. She sure is a girly girl! Heels, ball gowns, "makeups!" And baby dolls. Gratton says, "girls are crazy... You know, I only like video games mom." Yes Gratton, I know. Video games and winning..... Kids are crazy but awesome!
Also, my baby sister is getting married on Saturday!
Thursday, July 2, 2015
Monday, June 22, 2015
David and i have been working on getting better routines with the kids, now that I'm home with them. They both slept in their rooms last night and this is day two of making them eat only at the table. That shouldn't be as hard as it is. Gratton tried using logical arguments but I put the "I'm the mom" foot down. There was a big tantrum, but he recovered faster than I thought he would.
Friday, May 22, 2015
I'm in my room and Grat and Kahlan are in the front room watching My Little Ponies. The show stopped and Kahlan said "uhoh!" and Gratton said "that's okay Kahlan, its just loading that happens sometimes because of the internet." Kahlan sighed and said, "ohhh." It's so adorable hearing him teach her things... It's the little things in life!
Kahlan is very into two things right now- popsicles and baby dolls. When she asks for a popsicle at breakfast time, or after she's already had one, naturally I tell her no. So her cousin gave her a baby doll that eats an ice cream cone. This morning, she was talking to her dolly in a tone that sounded vaguely similar to my own. I got closer, so I could hear what she was saying, and had to cover my mouth to keep from laughing. She was telling her baby, "no pos-icles honey. No no." I love this girl!
Friday, May 15, 2015
Today I asked Gratton to tell me 3 things he was thankful for. He said, "his hat, his diamond sword and his sack boy (a toy I made him)."
Kahlan said I love you tonight for the first time! She kept saying, "mom" and when I said what, she'd day "I love you". She did it over and over. I love her.
Kahlan and I played dolls tonight. She wanted to wrap them up and put them to bed. She had me get her pillow out of her bed, and she laid them on the pillow and tucked them in with her purple blanket. Then she would say, "go to sleep".
We watched interstellar with Jonny for his last night here. Gratton Watched it with us but Jonny fell asleep haha. It was a good movie, and today was a good day.
I had awful back pain today and blood in my urine again. That's actually good though, because today was the day of my ct scan. And it needs to be done while there's blood in my urine, or it's worthless. Because to confirm Dr Rahims diagnosis, he needs to know if there are kidney stones along with the hematuria. If there's not (which there usually isn't) then it's what he thinks- hematuria flank pain syndrome. I got a ct scan last year but he insisted on another one, because he said it's a very rare condition. In his clinic of 9,000 there are only 2 patients with it, and only a few hundred world wide. So that will be interesting to find out what it ends up being. Luckily Dr Rahim is literally a genius. He and his brother are crazy smart nephrologists. I'm glad they somehow ended up in Idaho.
Sunday, May 10, 2015
Gratton and David play video games together, it's their thing. Gratton is really good! He doesn't usually like me to play with him because he says I just waste his lives. He and David beat the game Little Big Planet 3, but Gratton wants to beat it without dying. There are prizes you get, for beating the level without losing any lives. Sadly, the game glitches quite a bit! So David has gotten to the last part of the game without dying and then the game freezes or something, and he dies. Anyone who knows David knows that this causes a rant about game glitches and how it cheated him and yadda yadda. So David told Gratton he needed a break from the game, because he wanted to take the disk and just throw it away. He's a rage gamer. Gratton kept asking him to try beating it again without dying, over and over, and it was driving David nuts. So he told Gratton not to ask him again, and that he would tell him when he was ready to try it again. About 20 minutes later, Gratton said, "Did you say you're ready yet?" David was like, "are you kidding me?! He found a Loophole! I'm not even mad. That's lawyer thinking right there Gratton. But that's pretty much the same as asking me to play, so you can't ask that question anymore either." This boy is too smart for his little four year old self.
Saturday, May 9, 2015
When David and I came home from our date tonight, Gratton had a whole bundle of dandelions that he picked for me. I've never seen such a beautiful bunch of dandelions. He said, do you love them mom?! I said of course! And he said, now our love is even stronger. I love my little boy. He's the sweetest thing in the whole world. I'm so lucky to be his mommy!
Saturday, May 2, 2015
Thursday, April 2, 2015
Things I am grateful for: my beautiful family- David, Jonny, Gratton and Kahlan. My education, my four limbs, sight and hearing. The scriptures, the gospel, the amazing ward we live in. My job, my health insurance, our house and backyard, our cars. The joy we feel when spending time with our kids. The love our children have for us. The love David has for me.
Wednesday, April 1, 2015
I'm having a pancreatitis attack (I decided to blog to try distracting from the pain) and it's one of the worst I've had. I was on the floor curled in a ball and Gratton jumped on me to try making me happy. David asked him why he did that and he said, " you know I don't like it when girls are in pain." I don't like it either... I wish I could make it stop... But it won't... Because that's obviously not in the cards for me... For now- one day at a time
Monday, March 30, 2015
The nights that the kids don't wake us up are also the nights I can't sleep. Also, why does my side pain (from my pancreas) have to happen at night too? Maybe if I stop eating and drinking at five pm, then I can sleep without pain. I'm looking forward to the celiac bundle block on April 7th. They say that should numb all organ pain for a few months. So then I'll just have to go in every few months for the rest of my life, no biggie.. Good thing my husband picked a job out that will give us the ability to be able to do this. He didn't know when he married me that I'd be chronically ill, but he's handled it better than some who do know before hand. I'm glad he can be so patient with me, the kids, my brother (who lives with us) and God, while we're in the midst of this awful trial. It's not easy but he lets me rest, cry and even whine when I need to. David Mayfield is a good man.
Saturday, March 28, 2015
Last week was a quick one! David and I both worked every day and Jonny watched the kids every day. Monday night David and I tutored a gal in high school geometry. I was impressed with what a good teacher he is. Tuesday night I was sick and slept all night. In fact, I think I slept every evening last week... I started a new medicine because the chemo was finally too much after a year and a half and it had stopped helping. My kidneys kept getting worse and my specialist consulted with another autoimmune specialist and they came up with a better plan for me- cellcept. It has less side effects and has a better chance of putting lupus nephritis pts into remission. Right now I'd just be ecstatic to have my symptoms lessen. Dr Hancock did say that I'd have to be not having any symptoms for a long time before they'd think of taking me off of it, but that remission isn't impossible. That's what I'm hoping and praying for, though I know that just because it's something I WANT, it doesn't mean it's something God has in the cards for us. I'm not mad at God for making me go though this. Even though I've been up for hours and am in pain and have no idea how long it will last. My son is four and has begun to realize that I am sick all the time. He hates it and so he tells new he is giving me healing potions, strength potions, and happy potions if he finds me crying from the pain. It breaks my heart because I don't want to be sick and I wish so badly that I could play outside with him all day and that I could be ok, so he could feel like his "healing potions" he makes me are working. I know this is his trial too, but I wish he didn't have to deal with it. David too... That's the biggest reason I wish I could get better, so I can stop watching those who love me see me suffer. It gets tiring when you know they'd do anything to take the trial away, but that isn't gods plan.
Thursday, March 5, 2015
Tuesday, March 3, 2015
Friday, February 13, 2015
Monday, February 9, 2015
Monday, February 2, 2015
Tonight was a great Monday night. We had pork chops, mashed potatoes and mixed veggies for dinner, and Gratton joined in when we said the dinner prayer.
Then we had an awesome nerf war! We have enough nerf guns for everyone except Kahlan, so she had two foam Minecraft swords that she used. She also had fun picking up the nerf bullets. I think this is going to be a weekly tradition for family night.
Next David and I played magic against each other, while watching super humans with Jonny. Gratton joined my team in the second hand (we put Kahlan to bed). He had quite the imagination on ways wet could beat David. In the end though, David beat us 2-1.
Then Gratton talked to David and I about Minecraft, his favorite game right now, and we read him some books and put him to bed. He said the prayer and it was so precious. He thanked Jesus for making the world for us, and food that we could eat to be healthy. He said some other precious things that I can't remember.
I love our family and all the blessings we enjoy. Now I'm going to go to sleep, another thing I love!
Saturday, January 10, 2015
Kahlan won't take a nap lately when we put her down, she just screams and runs out of the room. Then today, I find her cuddled up on the front door mat... Hopefully they'll send the screws for her crib soon, so we can get it put back together! They got lost in the move, so we ordered more. She's way too young to not have a crib!