Who Do I Want to Be?

This year I turn double nickels. You would think by now I would have a pretty good sense of who I want to be when I grow up. Not so. I feel as though someone put me in the washer on the spin cycle and walked away for several hours. As Elvis would say, “I’m all shook up!”

At different stages in life, different things tend to define you. High School shenanigans … and there were plenty of them! College explorations. Young married adventures. Parenthood. And now, a bit of an empty nest. But what the heck does that look like?

What do I do all day in my partially vacant roost?

I read, knit, go to Dr.’s appointments, spend a lot of time in the ladies room, occasionally meet with friends for food or coffee, cook a little, clean a little, and ponder a lot.

But changes are coming if I can get some healing under my belt. To add to the above list, I want some action verbs included in my day. Recently I checked out a local health facility where many of my friends go. I’m kind of sneaking up on the idea of becoming a very active member there.

That’s how I do the hard stuff in my life. I walk all around the idea for quite a while, viewing all the angles, circling it several times and trying it on mentally before I sign on the dotted line.

This time around it’s the exercise piece at the health-plex. Last time it was going on Remicade, which is yesterday’s news. (Third infusion is coming up first week in April and so far, so good. Not too much improvement yet, but…)

So now I have ordered a new swimsuit and flip-flops. Bought goggles and some conditioner to take in my swim bag (shampoo and body wash are provided). Practiced my route to the facility. Planning my trial day guest pass. I can feel the water rushing over me already.

Did I mention I plan on swimming? I love pools. I am totally obsessed with them. We have planned some entire trips around a certain pool at a hotel. I am not technically known as a swimmer but this is part of who I want to be. So doing laps in the pool will be my weapon of choice against my sedentary life style.

A reflection begins to form in the mirror, emerging from the shadows of tough times. I think I recognize her but I am not quite certain.

Swimming laps around the old me,

Caroline

Labels: change, Remicade, swimming

D-Day

• Alarm set for 6:00 a.m.
• Awoke 5:15 a.m.
• Shower
• Briefly researched blogs as to whether or not to have something in stomach before infusion
• Decision: eat an egg, a few potatoes and half of a sausage
• Ride arrives at 6:50 a.m.
• Mild traffic on freeways
• GPS lands us there 10 minutes early
• Most difficult part of day: finding the actual room for treatment
• Nice staff…thank goodness
• Weigh in
• Blood work… I never watch
• Take Tylenol for possible headache and Benadryl for possible reaction (no reactions occurred)
• Sign waivers
• Hook up Remicade drip
• Sit for 2 hours in chair watching Morning TV Show and dozing
• Pleasant ride home with chauffeur/good friend
• Eat small bowl of soup (brought by loving neighbors)
• Take three hour nap
• Wake up as if nothing ever happened

Things to differently next time:
• Not worry so much the night before
• Drink plenty of fluids so my veins will “pop” easier
• Not stress about getting to infusion location
• Relax while I am there and either read or knit a little
• Count my blessings evidenced by the number of friends who lovingly care for me by notes/messages and acts of kindness when I am down and out
• Realize that although I have put off this course of action for about two years, trust that this is the right decision now
• Remember to continually call on Jehovah Rapha… the One who heals

In late August I began pursuing alternative medical treatments to avoid taking a drug called Remicade. My Gastro doc felt this drug was my last hope apart from major surgery. Colon surgery, by the way consists of a two-part process. First they cut out most of the bad colon, bring part of the good colon (if there is any) to the outside, let you heal for several months and then they go back in and “fashion” a new colon with the what’s left. The good news is you don’t have to take all the intense meds for colitis anymore and your risk of colon cancer is greatly diminished but the bad news is you have a lifetime of less than normal bathroom habits. I’m trying to write this as delicately as possible, really I am!

So my step prior to that drastic measure mentioned above involves taking the infusion drug, Remicade. I will go to a clinic designed for infusion delivery and sit for about 2 hours while this drug surges thru my body. I will be left with a weakened immune system, an increased risk for Lymphoma, Heart Failure, Lupus-like syndrome and an assorted other unpleasant maladies. While I know that all drugs come with risks and side effects, this one scares me. And yet, despite the fear, I am ready for them to hook me up. I feel that bad!

Yesterday I had a colonoscopy. I don’t even know how many I have had. I go way, way beyond the “routine exam of people over 50.” This time around my inflammation was so bad the Dr. chose not to view the entire colon. I hope and pray nothing cancerous was lurking in a crevice he did not explore. After it was over he reminded me he wanted me to take Remicade over a year ago. I wasn’t ready then and I am not completely sure I am ready now.

My Alternative Medicine Dr. says I have to be at peace with my decisions. I need to bless the drug so that it can do its job. Four months ago I would have offered my veins kicking and screaming. She says I would foil the benefits of the drug with that attitude. I wonder what else I foil with the wrong attitude?

So today, the day after my colonoscopy, I showed up at the Dr.’s office for more poking. Blood tests and a TB test. Thursday brings a chest x-ray and bone density scan before I get the green light for Remicade.

I know there are worse diseases out there. God love all the people suffering from heinous forms of cancer and other serious illnesses. I try not to whine, does this sound whiney? If so, I apologize.

I show up places with a mustered smile and people ask, “Are you feeling better?”

Not yet ... but I have hope. Hope is good.

Still pursuing healing,
Caroline

p.s. Happy Valentine's day. Life goes on doesn't it?!

Labels: blood tests, Colonoscopy, Remicade

Sadness

Yesterday sadness clung to me like today’s low-lying clouds swathed on the landscape of the valleys alongside the freeway. Thick and seemingly impenetrable yet in reality, having no real substance at all. When I tried to articulate my woes to a friend, I felt like a silly seventh-grade schoolgirl not picked for Student Council.

Funny thing is, when most girls were experiencing social anxieties and feelings of isolation during those years between 12 and 16, I was not.

At the first Girl’s Club meeting, I remember leaving the room for a vote and returning to find myself elected President. I was on the B-squad for cheerleading and on the A-list for almost every party. I had a Junior in High School invite me to Homecoming (my parents said no). Socially speaking, I think I peaked out in Jr. High! In today’s vernacular, I was the s-h-i-t!

High School seemed relatively pain-free and remembering college days makes my heart sing. So I guess it was bound to happen. Some social despair finds it’s way into everyone’s circle at some point in time.

Relationships have ups and downs. Friendships wax and wane.

Real or imagined, I feel alone.

This disease fosters feelings of isolation. No one wants to hear how I really feel. True descriptions of my symptoms would elicit cries of “TMI!” When others are making plans for weekend get-aways I am just hoping I can make the drive to Kroger and back without incident.

Some other things drift behind the scenes. Friends fighting cancer. Job woes for those I hold dear. And I hate being misunderstood. I abhor unresolved conflict. When the two meet, the effects of both often multiply. And sometimes those, not even involved, choose to take sides dismissing the adage of “there are two sides to every story” and scorn me unnecessarily. I know dwelling on this negates the positive things I pursue for healing.

So today I followed my own sage advice and partook of some of my favorite tank-fillers. Trip to favorite coffee shop for tea and a scone…check! Visit to Half-Priced bookstore for purging and acquiring of books … check! Treatment from new Dr. (who I love and adore more with each ensuing visit) …check! Lunch with a favorite friend who totally gets me …check! Time for reading new favorite book (1000 Gifts by Ann Voskamp) …check! Late afternoon coffee and neighborhood Bookclub later tonight!

Seeing the needle rise as we speak,

Caroline

Starting fresh. New resolve. This year will be different. I always feel this way when the calendar turns over. A new me will emerge from the heavy life layers suppressing the true Caroline! I'll have to start wearing a nametag everywhere I go because no one will recognize me.

Up until now, reframing myself has not transpired. I show a minor burst of energy toward change but it fizzles quickly like the snow melting on the warmer asphalt roads of the Midwest winters.

Doing the same thing year after year expecting different results is likened to insanity. I must be a bit crazy then.

2012 will see real transformation. I feel it in my bones. I got a head start last September when I started my alternative/integrative medicine pursuit. It’s hard to explain that while my Ulcerative Colitis (UC) is as bad as it has ever been, in between bathroom stops, I feel great. Some have asked what I attribute this to. Supplements, diet change, acupuncture and prayer, definitely not in that order. The trip to the "new" Dr. was an attempt at avoiding a drug called Remicade (http://www.remicade.com/) and while I still have slight reservations, I no longer am averse to taking this drug. I’ve come to a place of peace with this next step of treatment.

This doesn't mean the new medicine exploration did not work. They never promised to rid me of my UC. They tried unsuccessfully to "turn it off". But I think I went there/am going there for different reasons, some I am not even aware of yet.

Projected transformations:
1. Walk! See this video! http://www.youtube.com/watch?v=aUaInS6HIGo&feature

2. Travel! See Caroline go … without all the pit stops!

3. Knitting socks! It's intimidating but I'm going to do it!

4. Eat well. Remember, I do know my way around the Whole Food stores now!

5. A steadier dose of God things. You should see the books on my nightstand and Kindle!

I have to go now,
Caroline

Labels: change, knitting, Remicade, walk

The family dispersed to their homes yesterday, save the Phoenix-bound boy who leaves later this week. I watched the buildup of new babies, painted rooms, elaborate menu planning, extravagant food shopping and careful gift purchasing slowly dissipate as the week wore on, ending in one final sigh ... of contentment when the last car drove away. How blessed I feel to have my children enjoy coming home to each other.

We opened gifts on Wednesday, ate a traditional Christmas dinner on Thursday, dined heartily at a local restaurant on Friday, consumed java and scones at our favorite coffee shop on Saturday, rung in the New Year with a bit of the bubbly and all drove to our hometown to have an extended family celebration on Sunday. Love, love, love all my extended family. Even the grumpy BIL who never seems to like what he gets from the Christmas gift game! I love him, too.

All the Christmas boxes still sit stacked in the family room but they are neater than ever, having been organized by yours truly. They'll hit the attic sometime later this week when there is room to maneuver in the garage. Most of the gifts have found homes on proper shelves or in closets. New books sit mingled with the old, ready for a read some quiet winter day. Now its time for pondering the New Year.

I expect great things. I'd love an even cleaner more organized house. I'd like some financial relief from some property that has been on the market for several years. A few new appliances would be nice as some are on their last leg. New furniture for the Lodge room would be great. I want a healthier body.

But enough of the physical.

Love God, love people seems like a great moral focus for the New Year. I do love God even though I kind of took a break from traditional church for a while. And I love people most of the time but here too, I see room for improvement. How to increase my love for both is something worth spending time trying to figure out. Hmmm ... Love expands when the heart is warm and pliable. This always brings me right back to thankfulness. My go-to act to get closer to God and feel more loving toward others lies in an increase in my level of gratefulness. By acknowledging God as the provider, I diminish self.

So goals for 2012: A big heart, full of love for all beings here on earth and in the heavenlies. And instead of a long list of things I want in the New Year (see two paragraphs above), an even longer list of all the things I feel truly grateful for.

Sounding a bit sappy but sincere,

Caroline


p.s. I got a Kindle for Christmas! Perhaps a no brainer for this bibliophile.

Labels: God, gratefulness, Kindle, love, New year

This may be the best Christmas yet! I can't really explain it but while my illness is keeping some of my spirits down, the rest of me wants to soar. I am a wonder at this!

So I can't eat my normal quantity of cookies or family coffee cake this year. The plus side is I am slowly moving further from the Plus sizes! Little by little and barely noticeable but you know how that is when a woman sees even a half a pound of something disappear off her body? There is great rejoicing in the bathroom by the scale or in the Dr.'s office!

I have the green light for the consumption of apple, cinnamon and mushroom. Not in the same dish, mind you but apple crisp... here I come! One of the first things I consumed was a Starbuck's Pumpkin Spice Latte. I love them. I order mine with soy milk and less pumps and it pains me to say. "no whip", but I do. Some clerks are kind and don't even charge me extra for soy since I decline some of the pricey stuff.

I will also admit right here and now that I have had a little gluten more days than I should. It started out small and innocent and now the frequency of my ingestion resembles a snowball rolling down a steep hill. The rhetorical slippery slope is playing out when I make food choices. I feel mildly guilty about this. While my Dr. identified gluten as low on my taboo list, she also said it would not be one of the first things she would add back in. I've jumped the gun a bit. I need to toughen up my resolve. Hmmm ... I think I have said that before.

I still avoid bovine by-products. This one I have kept to almost faultlessly if you don't count a little milk chocolate every couple of days. A piece or two of pizza in 3 and 1/2months deserves a bit of praise, given that it is one of my favorite foods on the planet.

Rereading some older posts I see how exhausted I felt. Here lies improvement, as well. My Dr. says by the time I see her every two weeks, she can tell I am drained but not like I was when she first started sticking needles in me. And that whole acupuncture thing... I am truly a believer now. If I doubted it before, not anymore. I feel great about an hour after each session once I get my legs and equilibrium back.

But those are just some physical things I feel good about.

Some less tangible boons: The anticipation of having all my children under one roof for a couple of days during the holidays. Hearing the distinct cry and smelling the sweet breath of a newborn. Seeing the toothy grin of a baby who is days away from taking her first steps. The adoration exchange whenever I am near the newlywed couple. Chuckles which surface as I read son number three's Face Book posts as he counts down the end of an era of his life in the Deep South. The checkbook in the black enough for giving some to others not so fortunate. A caring husband who understands my despair of this illness.

And the recognition that a loving God cares about the timing of just about every little tiny thing in my life. How fascinating it might be one day to see it all from a heavenly perspective. By then, I probably won't care.

Trying to keep my feet on the ground,

Caroline

(photo from Photobucket)