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?
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.