Thursday, November 26, 2015

Thanksgiving Eve

Jonny to Kahlan- "Do you wanna have cat for Thanksgiving?!"
Kahlan- "WHAT THE?!"
Seeing your kids develop their personalities is so awesome!
Gratton tonight wanted to help me clean and brine the Turkey. He said it was gross though, and he WAS NOT eating it tomorrow!

Last night, Gratton spent the night at his Uncle Bill and Aunt Kirstie's house. He stayed all day long today, and played with his cousins. It is crazy to me that he is old enough to spend the night away from home, and not be scared. When he came home, he gave me the biggest hug and said, "Did you miss me so so much?!" I assured him that I did, and he grinned so big.

Gratton and I spent about an hour before he went to bed, reading lots of books. He loves to read. Tonight, we started a book that is too long to finish in one night. He was very concerned about what we would do because it was too long to finish. I then taught him about bookmarks, and he was excited. It's crazy how such little things can make you feel so much love and gratitude for life. I am so grateful for my little Gratton. He is such an amazing spirit, and I can't believe we were trusted to raise and teach him. I definitely am enjoying every moment of it.

Kahlan and I had the whole day together, since Gratton was at his cousins. We did a lot of painting, and danced, and I let her play in tap shoes for the first time. I am going to start teaching her some technique classes, because she loves dancing. We went to see David at lunch, and went to Burger King. Then my little buddy and I went shopping at DI. We found some great clothes for Gratton, and a pair of nice hiking like shoes for Kahlan.

Gratton and Kahlan both have been very into Scooby Doo. Kahlan plays Monster games with Jonny. Today she "caught" him in a trap.

Monday, November 23, 2015

Kahlan Plays Salon, Gratton Plays Art Connoisseur

So last night, Kahlan sat on the top of the couch behind me, brushing my hair. While she was doing it, she kept saying things like, "Sorry it hurts, you have sticky food in your hair." She was saying everything I say while doing her hair. It was so funny. She loves being just like me. She helps me with the dishes, and follows me with the dry microfiber mop, while I mop. The mopping actually helps, because she dries it as I go! A few minutes later, David and I were cuddling while watching TV with the kids. Kahlan said, "Mom! Let go of my Dad! Don't hurt my Dad!" Then  she came and moved me away from her Daddy. She's a protective little thing, and loves her daddy!

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

A Hypothesis on Why

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

Star wars 6 night

Kahlan and Gratton, David, Jonny and I have been watching the old Star Wars movies, to get ready for Episode 7. Also, it has just been a long time since we've watched them. 

I've been super surprised that the kids like the movies so much. As a kid, I didn't like them very much. Kahlan is funny. She said Jaba is a "dirty dragon ". She keeps saying she can't go get stuff from upstairs because her legs are broken. She was watching the movie, sitting on David's shoulder, then saying "I watching from up top." She's hilarious.