Friday, June 29, 2012

on death

Journal entry from yesterday:

I find myself thinking about death a lot. I think it’s normal, especially for me since I am a pretty dramatic person. I imagine it’s hard for anyone to feel like they have a long healthy life ahead of them when they are in a current state that seems unsustainable. In not even 2 years of rhuematoid arthritis, I have felt my body go from great (thought slightly heavier than healthy, hey I was 6 months out from the birth of my 4th child, c-section mind you, no jumping up and going for a jog) to so very very different. I’m so much slower, so much weaker, so much more frail. It’s not just this, but the fact that it’s a disease that really is linked to higher mortality rate. I just read today something to the effect of people with unresposive RA (which is pretty much what mine has been so far, progress with symptoms, but not with the disease itself)  have a mortality rate similar to that of people with stage VI hodgkins lymphoma, and heart disease that affects 3 valves (or arteries, or something or other of extreme importance). I feel like death is on the table, though obviously it is for everyone, and no one knows when they will die. But I have just been thinking about it so much. It’s not a desire to die, i’m NOT suicidal by any means, I just think dying of some complication is a possibility in my current state.
There’s also the fact that the medicines I am on are highly toxic, and have a history of dangerous side effects. Leuflonamide, the one that’s been added most recently says right in the warning that it’s linked to liver problems, ESPECIALLY if used in conjunction with methotrexate (which I am on), it’s not recommended, although it notes it can be more effective in certain cases. I have to get my blood checked EVERY SINGLE MONTH to monitor my inflammation and RA stuff, but more especially to make sure my vital organs haven’t been damaged by the meds since the previous blood draw from the month before. Which reminds me, I need to go get a lab work tomorrow. I have been paying special attention to the whites of my eyes for the yellowing from liver failure. So far so good.
So anyways, I often laugh at my morbid inner monologue. When people do random nice things for me, I find myself wondering if it’s because God is trying to make my last memories of life especially happy, or that He knows that when I die, they would feel bad for thinking of me and not doing anything. I’m taking more time to try to enjoy the time with my kids, and make sure that they have something nice to remember too, which has been really nice actually. But still I think, “Is it so wonderful because my time is short?”  I have been losing weight, is it because Heavenly Father wants me to have that satisfaction of feeling good about my body since I wont have it for long? Did the YW leaders feel inspired to let me come to girls’ camp even though I’m not a leader, because Heavenly Father knows how much I love it, and wants me to be able to go again before I die. Or even if I don’t make it that long, he doesn’t want me to die feeling rejected from YW camp. You see? I’m sooooooo dramatic.
I think about who will be Jason’s wife, and mother my babies after I’m gone. Last night my kids were talking about much they love one of my awesome single friends, and how they wished she was their aunt, then Athen upped it to wishing she was their step-mom, with was met with emphatic approval. Wouldn’t it be great if she was our mom?!? I knew they didn’t know what getting a step-mom would entail, and I certainly wasn’t going to bring it up. Though I agreed she would be a great mom, and internally sighed that my kids might eventually have very keen knowledge of why a person gets a stepmom. I was told in a blessing that this experience would be short. I don’t know which experience that is really, RA, having trouble controlling my emotion with my kids(which is why I requested the blessing), or my life. Or is it just an eternal perspective thing? I'm going to get old, but it will seen short in the grand scheme of things. I didn’t get a “no you aren’t going to die” answer. Everyone is going to die. No one knows when, and since I don’t know, I should not assume I have a long time to be the mom I want my kids to remember, whether they remember it with me on the earth or not. Shouldn’t we all ‘live like you were dying” as the twangy country song suggests?
NO regrets, dead or alive,  

For the record, I didn't post this to disturb all of my readers, I just want my blog to be an accurate account of my experiences thus far. And after the last post, I'm starting to worry people think I have inhuman optimism. I'm no Pollyanna. I often post about things that are profound or interesting to me, and it's the sweet peaceful conclusions I've come to only after plenty of stressing over things. This is the other side of a coin. I love that life can be so many things all at once. I can love life and feel so lucky, and at the same time be thinking "This is going to kill me , I just know it!". It's all life, its very me, good and bad.

Thursday, June 28, 2012

on life.

Tonight I was reading a quote about the principle of compensation, and how all sorrows will be made right 100 fold in the Lord's time, and I thought to myself, "Am I going to be compensated for this time that my body is so inconveniently beset with arthritis?" ( And yes, I'm talking about it again, sorry! Do you feel like you are reading an arthritis blog yet?)   I was surprised at how quickly my thought's answered back, "No". Well let me explain a little more, I am sure my body will be repaired since I plan on having it forever at some point so in it's current state it just isn't eternally sustainable. But compensation, no, that implies some sort of imbalance that needs to be corrected. I don't see my health that way. There's a story there. You see, when my mom was pregnant with me, I got all tangled up in my umbilical chord, but instead of knotting and killing me, it just grew longer and longer. I heard after I was born, they kept it in a jar at the university. Cool, and weird. So anyways, the ultrasounds were a fright! I appeared to have a hand and foot growing from my head, and just looked hopelessly deformed.  The story goes that my parents even got a letter from the Utah governor's office suggesting they abort me since I wouldn't live anyway, and the cost of trying to save me with only a slim chance of success (and even then with only the hope that I'd be a vegetable) would eventually be an astronomical financial burden for the state. If you know my parents (staunch mormon, and devout catholic) you'd know that abortion was out of the question. So the time came for my birth, and there were all sorts of specialists there ready to whisk me away and attempt to keep me alive when I came out... totally fine. Just a little tangled up in a miraculously long chord.  I was born stealing health from where it shouldn't have been.

Jason and I have often remarked that life is just so nice together, that we are subconsciously waiting for a big bomb to drop. We are not trying to be pessimists, but we have both had that feeling of, "Sure this is nice, enjoy it, but life doesn't come with a guarantee of pleasantness", on the contrary it is supposed to be the hard part of our existence, heaven is where it's all fair and wonderful, but only after the hard learning process of earth.

So, for a little portion of my good health to expire 26 years after the warranty was up, I still feel like I have been overly compensated already. I'm just saying that if heaven were to really balance the books, so to speak, it wouldn't be in favor of a long heathy life, i'm overdue in that department. It was already ridiculously unfair in my benefit, I can't really ask for more. And yet even with this "hardship" I still get all sorts of help along the way and reassurance that it will be or at least seem like a short time. So there you have it, life's not fair, but it's not fair in my favor so who am I to complain (not that it stops me).

Sunday, June 17, 2012

Thankful Christmas Tree

Last Fall, I saw a lot of adorable thankful trees, where families had written things they were thankful for on paper leaves, and taped them to the wall. I wanted to make one, but missed it for Thanksgiving, so ours was a big green thankful Christmas tree. After Christmas, I kept the stack of papers at my computer desk so I could make the list of things the kids were thankful for, and there it sat, and here I am in June going crazy about the clutter on the desk, so I'm finally getting it typed out!!

We are thankful for
Our House
The Temple
Heavenly Father
Baby Jesus
San Diego
Our Family
Ms. Cindi
A Heart for Love
Grandpa Ricky
Dad and Mom
Grandpa Ricky (again)

And several discernible pictures that seem to be (and very well could be): A three-eyed monster,a butterfly, a hook, and a family. 


Summer lovin' had me a blast...

Well, not so much in the Grease sense of the phrase, but we are LOVIN' SUMMER and HAVING a BLAST! Oh, how I love summer! Here are some highlights so far:

Summer Camp! The older 3 kids have been going to various summer camps here and there and really loving it! I love that they get to do fun things, just be kids, be active, and that they don't have to slow down because of me. I also like the little pockets of one-on-one or at least one-on-two time I get with whoever is not at camp.

 Summer Reading! It's been fun having more time to be at the library, and more quiet time to just read stories. I also love that my kids are old enough to enjoy listening to books that I actually enjoy too. I have many favorite children books, but a person can only stand so much worrying from the little toy clown and toys and dolls, wondering if a train will ever help them get all their goodies to the good little boys and girls on the other side of the mountain. Seriously, that book is forever long. Right now we are all thoroughly enjoying Shannon Hale's The Princess Academy.

 Summer Weather! I love that that sun has come out in full warmth and we can enjoy warm days at the park, cool nights watching fireflies, hot days perfect for going to the Ice Cream Machine, and summer storms to cool it all off. Not to mention that nice summer glow we all have, and getting to unpack the boxes of summer clothes.

 Summer Schedule! I love that a few nights ago when it was bedtime and my kids begged me to let them stay because they found out I knew some swing dance, so they were dying to learn too, I could say, "Well, we don't have to be up early for anything so, SURE! Let's learn how to swing dance!" And I love that they were so excited to show Dad their ever so basic, but oh so enthusiastic swing steps.

 I love the cookouts, and the time with friends, and the many summer birthdays we get to celebrate, and I just have to say I wholeheartedly approve of the whole concept of Summertime! And it is only JUNE! July and August just get better!
Happiness does not depend on what happens outside of you, but on what happens inside of you.

Harold B. Lee