Journey to the Knot: October 2012

Wednesday, October 31, 2012

Dear Leslie

Dear Leslie,

It's been a full year without you now, and I still have a hard time believing that you are gone. So often Sam and I think about you as if you are still here; we have to remind ourselves that you aren't. It's so surreal that you're not a call or a one-minute drive away anymore. When we see a message on the answering machine, we still expect to hear your voice. When we need a babysitter, we still have you at the top of our list. When Banner meets a milestone, we want to share the news with you. When holidays approach, we expect to spend them with you.

While you are still with us very much - in our hearts and our minds - we miss you. I wish I could share with you the many times Sam and I have looked at Banner and seen you. There have actually been times when he makes a certain face, and I will respond with, "Hi, Leslie." I wish you could play with Banner, hear his belly laughs, watch his eyes light up when he learns something new, or console him when he's sick or hurt. I wish you could make Cream of Wheat for Sam when he's feeling sick, give him head massages when he's stressed out, or annoy him when he's annoying ME! I wish you had been able to hold Shelby's hand at her wedding. I wish you could have screamed with us that day on the lake that the choppy waters shook us up. . . I can totally see you freaking out! I wish you could laugh with us when Banner points at a pick-up truck and says, "Zaide!" I wish you could cheer for Miles at his football games and laugh at the way Colby calls his mother "Gayle."

I hate that you are missing such amazing time with us. This is such a special time, and I never, ever could have imagined that you wouldn't be here during these years. I hate that you only got to spend 4 months with Banner. I hate that you won't get to hear him actually call YOU "Bubbie" and not just your picture. He points to the bookshelf you made him before he was born. The first time he ever really noticed it, he pointed and said, "Bubbie." Now, he mostly says "Quack, Quack" at the duck on the side, but I'm just glad he notices it and likes it. Honestly, there was a time I didn't want to put that bookshelf up. If I'm being entirely honest, I didn't like it; I thought it was kind of ugly. (You were well aware that you and I had very different tastes. You once called Sam and I "minimalists" - and I agree, so the many stickers you placed on the bookshelf annoyed me.) Crazy how things change, though, right? Now, I really like it because it's a piece of you. We hang his little hats on the hooks, his Longhorn piggy bank you gave him rests on top, a sand dollar Sam brought back from California is gently propped up on it, and a few other odds and ends have been placed there as well. And, every time we look at the shelf, we're reminded of you and how much you already loved your grandson before you even met him.

Like I said before, you are still very much with us. There's not one occasion this year that has passed by without us thinking of you and missing you. Thanksgiving, Hanukkah, birthdays, anniversaries, Valentine's Day, Fourth of July... obviously, Mother's Day, your birthday, and now Halloween. You name it - and you were there with us in spirit. We just wish you could be there physically. I can still vividly hear your laugh, your voice, your expression. I can see your face, your reactions, your smile. It's like I just saw you yesterday. I had you memorized, Leslie, which is a good thing now because I can share so much of you with Banner. I often bring you up in conversation with Sam, letting him know how much I think of you. He misses you very much. He may not talk about it with other people often, but he most definitely misses you. I miss you FOR him. I wish I could take that pain away from him. It hurts to know how much he hurts, to know how much he longs for your hug, the squeeze of your hand, your "I love you."

Banner pulled a small jewelry box out of Sam's bathroom drawer the other day. He opened the box, and out came two cufflinks. I quickly took them away from Banner before he could put them in his mouth, and when I looked at the inside of the box's lid, I noticed a large lipstick kiss on it. I showed it to Sam. He told me the cufflinks were from you, and that kiss was yours. He got kind of giddy for a minute, so smiley and excited to have that. He took a picture of it on his phone, and he sent it to Gayle & Shelby. He said he never knew that was there. In some weird way, I felt like Banner, you, and I had given him a gift all together that day. A little piece of you. I know it made him happy to see that, but it also probably made him miss you even more, as he talked about how you used to leave lipstick blots like that all over the house before you would leave. He may be a my little boy's father - all grown up and sophisticated, but he'll always be your little boy who wants his mommy.

I think of that often when I'm snuggling with Banner. I can't imagine not being here for him. I hate even thinking that, and I hate it FOR YOU that you're not here for your kids and grandchildren. I feel like you were robbed of so much time, so much joy. But I promise you this: You are very much still here, very present, and very loved. Each month that Banner gets his PJ Library book, we tell him it's a gift from Bubbie. Each time we look at photos, we point to you and await his "Bubbie" response. Each time we are together at a family event, we talk about you and remember. Each time Sam or I have a big decision to make, we reflect on what your input would be. I hope wherever you are right now that you know how loved and missed you are. I hope you are at peace, that you are smiling down on us, that you can hear us think of you, and that you know you are still very much alive in us.

Love,
Amber

Saturday, October 27, 2012

Aches & Pains

Close friends and family members are always asking me how I'm feeling, how I'm doing since my arthritis diagnosis. I so appreciate them asking how I feel, and I tend to tell them honestly what being in this body feels like on a day-to-day basis - which is: it's difficult. It's a hard question to answer really, because each day is different, but mostly it sucks! I'm still working with my rheumatologist to find the right medication for me, and my body is quickly getting worse. Joints continue to hurt, and this "flare" seems to never end. I'm finding more and more things are affected by my aches, pains, swelling, and stiffness. Yet, when people ask me how I'm doing - I tend to hesitate on how much to tell. It's hard to know if they're asking to be nice or asking because they genuinely want to know what is going on or how I'm REALLY feeling. I'm not trying to say that they are disingenuous when asking, but you know what I mean, right? Someone says, "How are you?" and the polite response is, "I'm good, you?" or some variation of that. Staff members at the school I now substitute at (but used to work at for the past 8 years) will ask how I am, and I never know how much they really want to hear. They are my friends; they care about me; they would listen. But... they are also working, ready for a typical "Fine, thanks, you?" answer.

And, then, there's Sam. I feel like I complain to him on a daily basis. Sometimes I'm filling him in just so he knows what's going on with me or what new ailments have popped up. Sometimes I just need him to let me bellyache about it. Sometimes it helps to have a second person think these symptoms through with me so when I document or talk to the doctor, he can help explain or help me remember. Mostly, I talk to him at night when I'm dreading going to bed because I fear the stiffness and pain that awaits me the following morning. He's sympathetic and wishes he could do something to help. What's helpful is that he listens. What's helpful is that he doesn't complain about my complaining. What's helpful is that he is gentle and understanding.

Some nights, I go to bed with a list of complaints in my head and don't want to dish it all out onto Sam. Sometimes it seems unfair to have him have to hear the same things over and over again. So, I thought I'd write it down and be done with it! I just have to get it out there. So, if you really want to know how I'm doing... read on:

You should understand that most of the complaints I have are due to the fact that my knee, my jaw, both wrists, both elbows, and on occasion my neck and a few toes cause me pain. Some of these joints are visibly swollen (knee), some of them are not visibly swollen but the doctor can tell they are (toes), all are stiff, and all are achy. So, what effect does that have on my daily life?

Drying my hair is difficult. Reaching around to the back of my head, bringing the brush all the way down to the ends of my hair, holding the dryer, using a flat-iron . . . it's all frustrating.
Chewing can hurt, opening my mouth enough to get certain foods in can hurt
Stairs have to be taken one-by-one (going up or down), and even a curb is a challenge on some days
Scratching a hard-to-reach itch on my back is impossible.
Turning my body in bed wakes me up completely (and Sam usually) - it mostly hurts my wrists, but my knee and elbows too
Putting my purse on my shoulder, adjusting my clothing/bra on my shoulders is difficult unless I use the opposite hand (if I use the same side hand, the elbow won't bend enough to reach the shoulder)
Getting dressed is not as easy as it used to be - putting shoes and socks on and even off can be difficult
Let's get really personal for a second... think of sitting on the toilet and finishing your business only to have to use your wrist at an acute angle to clean yourself. Not so easy with a bum wrist. (But yes, the job does get done!)
Talking on the phone can hurt my wrists and elbows unless I'm hands-free/speaker-phone
Standing up or walking after a long sit (like in the car, at a restaurant, at a doctor's office, at the movie theater) takes a bit of wait time before I can really move
Shaking someone's hand hurts if they shake it with force. . . kind of embarrassing to wince as I meet a new person
Taking a casserole dish out of the oven is a challenge because it's hard on the wrists (you need more strength to grasp around an oven mitt/potholder)
Taking dishes out of the dishwasher - I have overestimated my wrist strength and dropped a plate once and on another occasion a drinking glass
Wrestling Banner on the changing table - ugh!
When it gets cold outside or when temperatures drop, I feel flu-like. I get achy all over, feel very weak, and have the chills.
I've noticed I can't turn my wrist all the way to wave to students in the hallway... it just looks kind of awkward.
My elbows won't stretch out all the way (or bend all the way) anymore. Reaching for something that someone is handing me can be hard - and it looks as if I'm not really trying hard to "do my share" of the reaching. I once read an article about a woman feeling embarrassed about this same issue at the drive-thru because she couldn't hand over her cash at the window to actually reach the cashier. The cashier kind of rolled his eyes at her as if she were purposefully being difficult.
Driving when my wrists hurt is another challenge. I wouldn't say it's dangerous because I CAN steer, it just hurts a bit. The worst is probably backing out because that's when you are most likely to be rotating your hands/wrists at a faster pace or at least in different directions in a short period of time.

Those are just a few of the ways this arthritis is affecting my daily life. I am just figuring out this whole disease - and I had no idea how much it would really impact me so fast. I was so glad when the doctor had a name for what I was feeling - but now I so wish this is NOT what we were dealing with. I've learned that trying to find a good medication that works well for an RA patient is like finding a needle in a haystack. I've been told by a good friend with RA that the meds I'm on right now will most likely not work because these low-level NSAIDs are like "spitting on a fire." But my doctors won't allow me to try harder drugs because I'm a young(ish) woman who wants more children sooner rather than later, so those drugs are not an option right now. Even the drugs I'm on now will have to be stopped if I do become pregnant. It's a bitch of an illness, and I'm sick of all the aches and pains. Emotionally, I'm doing okay - just taking it all in, trying to learn as much as I can, hoping for relief soon, and doing my best to not complain TOO much. I try to look at the bright side - I only have a FEW joints that are hurting compared to many RA patients with every joint hurting (even ones most of us don't even know we have); I don't have any obvious deformities; I haven't been dealing with this all my life. I know I'm "lucky" compared to so many other RA patients, and I know it could be a lot worse than arthritis. But, I still feel like a prisoner in this body that is betraying me. And, when you ask me how I'm doing - I'll probably still say "I'm okay," even if I'm not. I'll still thank you for asking me, and I will ask you how you are doing. And... I will genuinely want to know - because after all, you just read this whole long post, and you deserve to bitch a little, too! :)

FLASHBACK PHOTO

October 2011 - 4 months

October 2012 - 16 months

October 2011

October 2012

Favorite Fall Pictures

When I was younger, I absolutely loved summer. It was my birth month, it was swim time, it was camp time and homework-free days! But, as I've gotten older, I look so forward to the cooler temperatures, the holidays approaching, and the fun photo opportunities that fall brings. I love the anticipation of Halloween, Thanksgiving, and winter family time, as well as the amazing scents, falling leaves, awesome food, and the crisp autumn air. (I also have a guilty pleasure of listening to Christmas music, so knowing those are right around the corner makes me a bit giddy - and Sam a bit annoyed!) But, anyway... so far we've kicked off fall with some fun. Lots of pumpkin pics ahead: