Where Oh Where Have You Been?

When I started this blog, it felt like I had time. Time to write. Time to share. Time to breath. But alas, that is not always the case. After my fall into the rabbit hole with my health setback, I took a break from social media to seek out more connection, to myself, those around me, and in nature. For me, recovery  this time (for body and soul) included a change of surrounding, and I challenged myself by signing up for a travel course at my school based on Celtic Spirituality.

With classmates, professors, and new friends, I visited the Isle of Iona in the outer Hebrides in Scotland. I added to this experience by tacking on almost an extra week in Scotland with my friend and colleague (Yes, she’s both! Aren’t I lucky to work with friends?) Kerri. We were like a couple of (youngish) college kids, taking on the Scottish Highlands by train, bus, and ferry. It was FANTASTIC!

*I’ll write more about my trip in a separate blog, for now, I want to continue sharing with you why I took time away.

Both before and after my trip, I had been working in a summer internship placement at our local Dress For Success. Certainly a wonderful learning opportunity that lasted six full weeks upon my return. By the time my internship was over, summer almost was too.

There was the ever present work-life rush, and I just couldn’t find the time to come up for air. Scotland was a much needed respite, though I’m certain my body was still healing from the failed infusion. Almost as soon as we arrived, the cold and rain brought with it the need for steroids and out came the old reliable prednisone. Makes my body feel great, but my mind and my appetite go berserk.  Of course, jumping from work, to travel, to work, my body still had no time to rest.

I still didn’t take the hint.

I planned for us to take a trip to the Outer Banks of NC, where I was certain I could finally rest. The heat tires me out, but the beach begs to relaxation. However, a power outage on the islands the week before left had us changing our plans last minute. Our high school friend Jessica came to the rescue! She and her wonderful family live just north of Washington D.C. and they kindly opened their home to us and saved our vacation.

DC did a number on me though. Have you been to DC before? So you know (and if you don’t), there’s all that walking. Let me repeat. All. that. walking. You walk and walk and walk to get where you need to get and in early August, with a body that hates the heat just as much as it hates itself, that was a really stupid idea.

I had fun, oh tons of fun, but with each night came terrible aches. By the time we made it home a few days later, I needed another week to recover from the week I had just had. But there wasn’t time for that because school was starting back again.

It’s right about here where you say, “Woman. You are dumb. Don’t you get it?” And it’s right about here where I say, “Woman. You are dumb. Don’t you get it?” Okay, okay, well maybe dumb isn’t the right thing to say. But I should get it. After ten years plus of living with chronic illness and moderate to severe rheumatoid disease, I should know better. That brings me to now.

I’m three weeks in to my final year of divinity school. I’m trying to navigate my first unit of CPE (clinical pastoral education) at our local university hospital and family and school. It’s not going very well. Yet. I also, need to begin another treatment option.

All that time this summer when I thought I was over doing it, was really my body just not healing with the new meds I started after my failed chemo. I knew I wasn’t feeling good. I never let that stop me from having a wonderful summer though. Yes, my body fails me sometimes, I don’t let that keep me from living my best life. The best I can under the circumstances. So next week, I’ll start back on a new infusion.  That’s three med changes in less than a year. Next week, you’ll find me hooked up to an IV reading a book about grief and dying or pastoral care trying to fit it all in. I’m still learning to navigate too life with chronic illness. I will always be learning that because I will always be changing.

I’ll do my best, which is all I can do.

Loss and Grief in Many Forms

This article was originally published on the Wake Forest School of Divinity student blog, “The Tablet,” on April 4, 2017.

Last month I had the pleasure of taking Dr. Marsha Foster Boyd’s weekend class on Death and Grief.  Friday night was great, but by the end of the evening, I was feeling a bit run down.  This is normal for me though as my body usually requires more rest than healthy bodies do.  But Saturday morning I woke up with a very upset stomach, and even though I tried to talk my way out of it, it was apparent by lunch time that this wasn’t my normal sick.

I went down first, then my youngest son Griffin, then by Monday it hit my middle son Gage, and by Wednesday, the stomach virus had made its way back around to me.  Oy vey!

During my short presence in class though, I recognized a theme for my grief.  Most of my loss is not centered on the physical deaths of people I love, but rather the emotional deaths of ways of being.  Grief that I have a disability that will only worsen as time goes on, grief that I will never be able to have any more biological children because of this disease, grief over a future I had plans for.

I thought I had done a good job of dealing with this grief over the years.  I’m a “suck it up buttercup” and a “someone has it worse” kind of emotional healer.  I get knocked down, and jump right back up again, brushing off the dust so as not to leave any marks or wrinkles on my pants.

But on March 9, 2017, that changed.

My treatments were not as effective as they had been, so my rheumatologist and I had the “it’s time to change your meds” talk and I decided that an invasive chemo option would be the best fit for my busy life.  While the chemo would make me ill during the two infusions I would have two weeks apart, I wouldn’t require any infusions or shots for six months after that.  This gave me freedom.  And in a life that’s filled with constant doctor visits, infusion every eight weeks, blood work every four weeks, weekly, and daily meds, this gave me hope for a sense of normalcy.  No shots or infusions for six months…I’ll take the puking (after all, some people have it worse)…sign me up!

Then came infusion day, and forty-five minutes into said “miracle chemo drug that I was pinning all my desires of not being a pincushion on for the next six months” and I started to break out into hives.  It literally started at the top of my head, the itching, oh the horrible itching.  Then my ears felt like they were on fire and turned dark pink and even swelled up a little.  Then the rash started on my right cheek.  My doctor pulled the plug, er rather, the needle.  No more of this medicine, I was having an allergic reaction to it.

Wait, that’s not how this was supposed to go down.  I was going to have six months of freedom, and within ten minutes it was decided that the best, and only, treatment option left for me at this time would be a shot every week.  I walked in with plans for six months of nothing and walked out with a shot every week.  That’s not cool body, not cool.

I was on the floor, not in a physical sense, but an emotional one.  I came back to what we learned in Dr. Foster Boyd’s weekend course.  Grief comes in many forms, at many stages of life, and hits us in many ways. This was one of them.  I needed to grieve the loss of this idealized plan.  There was sadness, anger, frustration, questioning.  There were tears of rage, hurt, and pain.  More importantly, I know the loss and grief I am experiencing is probably the only normal thing to come out of this situation.

Bras. Love ’em or Hate ’em, We Still Wear Them

Bras.  Most adults living in developed countries are in contact with a bra, I would venture to say, on a regular basis.  If not personally, then by association.

The industry is designed so, that even if you’re not touching a bra, you’re at least seeing them.  In advertisements or in the stores.

Bra size is one of the numbers women in the Western world are assigned throughout their life.

We know our weight, our height, our shoe size, our pant size, and our bra size.  We are in intimate relationships with these numbers.

So, after working to lose over 100 pounds these past two years, and still wearing my 38-40 DD’s, it was well past time to buy a new bra. Or five.

Mistake #1.  Thinking a major retail outlet for bras (bras are their business) would be having a sale the weekend before Valentine’s Day and heading to the mall to cash in on this sale.  Sadness ensued when in fact, there was no such sale, on bras at least.  And, I didn’t need three pairs of panties for $25 (the bullseye store has me covered on that end), the only sale they had going.

Mistake #2.  Just because there was no sale on bras, didn’t stop my fellow consumers from flocking to said store the Saturday before V-Day, which added to my already mounting anxiety.  So. Many. People.  SO MANY.  You could barely walk around, displays that are cram packed together, littered with women, and men, digging through the stock pile to find bras.  It was becoming too much and I was only five minutes in.

Mistake #3.  Actually following through and getting fitted.  I have to say here that I have a good friend who works at said retailer and even though she was working like mad behind the register, she still took the time to come out from behind the madness and measure me before handing me over to the very busy fitter.  My friend was not the issue, and neither was the fitter.  The issue was me, but the busy fitter didn’t help.  She remeasured me and came up with a different number than my friend.  So this adds to the mistake because once I was inside the bra-cave, I did indeed end up with a first bra that was too big.  I told her that before I even tried it on, but she didn’t listen.  Again, adding to the mistake.

My body doesn’t look like it did 110 pounds ago.  My boobs sure as hell don’t look like they did 110 pounds ago.  Losing so much weight, having breastfed three kids, and being 35…my boobs look like deflated balloons, that once they are shoved into a hideous push-up bra, look like wrinkled, shriveled, spongy, tiny melons. Yes.  All of those things.  They are not attractive, not to me, and not even in a push-up bra.  Which is NOT what I was looking for.

Again, busy fitter didn’t listen.  I was specific.  I’ve recently lost a lot of weight.  I need an everyday bra with a little extra support and shape.  I was given a bra that was too big, then a bra that was too small.  Once we got the size right, I was handed four different bras with varying degrees of push-up capability.  All but one of them made me feel like my boobs were around my neck.  Standing in the bra-cave with a woman whose reply to my angst was, “Well that’s not your body anymore,” was not where I wanted to be anymore.

Mistake #4. Not speaking up.  You see, the thing is, this IS my body.  It might not be almost 300 pounds and in a DD any longer, but it is still my body.  While it now fits into a 36C with only minimal push-up, it still belongs to me.  They are STILL my boobs.  But instead of advocating for myself, which I am very good at doing, I let it slide, took my sizing card and let busy fitter shove me back out into the crowd with a directional wave as to where I could find the style and size I needed.  On my own, in the middle of the chaos, I sent my husband a text and said I was ready.  But when he came walking back in, I just wanted to sink into a hole and leave.  Which we did.  I was too overwhelmed by the last 20 minutes of my life to even care about buying new bras.

It wasn’t busy fitter’s fault.  I was just another customer in her cave, but I could’ve told her, “Now you look here, this IS still my body, and not in spite of the changes, but including these changes.  ‘Not my body anymore?’ Oh yes it is!”  Buuutttt, I didn’t.  Even the strong get overwhelmed and have moments of apprehension.  This was one of them.  I wanted to cry.  I was made to feel ashamed for the body I had, 100 pounds ago, and the body I have now.  That is no place a woman standing without a top on in a glitzy room with a full size body mirror looking for help with her boobs wants to be.

Our breasts are part of who we are, even if they don’t exist anymore.  They are a piece of our stories that we carry as women and men. Wives, mothers, survivors, and transformers. Whether we’re born with them, create them, hide them, add to them, or remove them, they are still and always will be part of us.  We need to honor and cherish them, yes boobs, as part of our life narratives.  Some of us are ready to make that commitment, some of us are not.  Some of us are forced into that choice, and some of us take years to get there.  Either way, we don’t have to let this number become a burden to us, the way we drag ourselves up on to the scales with or into a dressing room with.

Screw these numbers.  My weight, my shoes, my jeans, my bra…they do not define me.  They are still me, but not me at the same time.

I’m ready to have another go at bra shopping.  But not at the mall, maybe back at the bullseye.  Small steps.

Nose Rings and New Meds

I’ve wanted my nose pierced since middle school.  My parents would never allow it, and then I ended up with a family of my own and shied away from the idea primarily due to my intense concern over what other people might think of me.  Then, I’m faced with another curve ball in the treatment of my severe rheumatoid arthritis, only two options left at this point, both strong chemotherapy drugs, and suddenly I find myself on an unassuming Friday morning in a tattoo parlor in downtown Winston-Salem with a cheerleader and a needle through my left nostril.

How in the hell did I get here?  It was a few weeks in the making.  Conversations with my doctor began a couple of months ago when current my infusions began to lose their efficacy.  Difficulty sleeping, unable to control pain, fatigue, stiffness that lasted well beyond the morning, fatigue, nausea, swollen joints, bloodshot eyes, and did I mention fatigue…  We’ve tested for Lupus, it’s still inconclusive at this point given my plethora of autoimmune diseases.  At my most recent infusion a couple of weeks ago, on a Monday, the decision was made by my nurse to email the doctor.  I was not feeling well at all.  It was obvious the current drug was no longer working.  By Wednesday I was presented with two options from the nurse.  My last two options at this point.

The itch to do something abstract is always there, in the back of my subconscious, lying in wait for silly conversations when I can amuse friends with things my pseudo-persona would do in another life. In moments of facing my mortality though, the itch becomes an urge, which this becomes a nagging voice in my head, “If you don’t do X now, you never will.”  Taunting little witch. X could be anything.  Trying a new food (check), climbing a sort-of-ish mountain (check), getting a tattoo (check), learning to fly a plane, zip lining, holding a baby gorilla. This time X was a nose piercing.  It started with asking friends, “Do you think I’m badass enough? What about boogers? Do you think I could handle the pain?”  Then, it lead to calling around, getting quotes, and asking for recommendations from fellow bejeweled buddies.  My husband said to wait.  For when? I’ve already been waiting at least twenty years. And then, I made the decision to do it, and well, if you know me at all, you know once I set my mind to it, I’m in.  After all, this is *the* life.

I did my civic duty as a perpetual patient on immune-suppressant drugs and told the piercer, he was unfazed. I made sure to pee beforehand too.  Wise choice.  I’m a pee before anything kind of person though.  Pee before we leave the house, pee before I get on the plane, pee before preaching.  Peeing before a needle is shoved into your face is not just for pee before kind of folks though, I would highly recommend it, because yes, it hurts.  And your eyes will water, but you won’t be crying.  Biology is fun like that.  Biology is also fun at reminding the chronically ill that our clocks are turning a little faster than everyone else’s, so when those reminders come up for me, I do crazy shit like X.

By the beginning of March my body will start to remind me that she and I are not on the same page.  I’ve chosen a treatment option that will suck for a short while, but if all goes as planned, I won’t need another infusion for six months.  Weeks zero and two of the new treatment will include a cocktail of pain meds, antihistamines, and steroids before I even get the actual chemo drug (on a drip for 4 hours), and then Zofran afterwards for the nausea. But once those couple of days are over and done with, hopefully it’s six months of no infusions and needle prods in the arm…although I’ve already established needles don’t bother me, it’s still nice to know my veins can have a rest.  From the meds at least, there will always be blood draws and diagnostic testing.

Final thoughts to add, no, a nose piercing is not cultural appropriation.  Women, and men, from many cultures have been piercing their bodies for many a century.  I’m not appropriating any one culture by doing so.  Rather, there is an acknowledgement of all those who have done this in much more painful ways than sitting on a padded table with a person wearing sterile gloves and with much more spiritual significance than Darth Vader standing in the corner of the room.  Also, don’t listen to people who say it doesn’t hurt.  It does.  Shortly and intensely. Then, dull and achy.  My teeth on the upper left still ache from time to time.  I’m only two days out though, and I cannot take NSAIDs (yay my body) and that’s what the piercer recommended, so I’m going this route pain med free. (Don’t fret, I have a pretty high pain tolerance, except for the time I needed my gallbladder removed.  That shite hurts worse than 38 hours of natural childbirth.)  Things that still concern me that I think about…no, I’m not trashy, yes, I can be a minister and have a nose ring, and possibly, I just won coolest mom of the week. I still always mull over my mortality, getting my nose pierced doesn’t automatically keep me from thinking about it.  I live with it constantly, sometimes hourly, sometimes daily, sometimes monthly, but it’s always there for me.  I lean against the wall for stability, I have a cane, my shoes don’t have laces, these are subtle reminders that my clock sometimes mimics the Bop It! Game and speeds up and up and up with each round I go.  I’m alive now.  If I want my nose pierced, so be it.  I am a badass.  A badass person who has experienced pain in a multitude of ways and still drags herself out of bed in the morning to minister, because my life is a ministry in action. I love my calling and I honestly can’t believe somedays that I get to help people deeply, spiritually, compassionately, and fully in so many ways.  And now, I get to do all that and rock it with a nose ring!

Oh and if someone has a hook-up on holding a baby gorilla, that would be AWESOME to mark off the old bucket list!

Here We Go, On An Adventure

Welcome y’all!  I’m so happy you found me on the interwebs, and I hope you’ll enjoy reading about my many adventures, whether it’s travel, school, health, or home.  I’ll be writing more in depth content very soon, in the mean time you should know that this is a space for me to tell about me.  I’m a complex yet simple person.  I’m politically progressive, radically compassionate, and fiercely loyal to my friends and family.

For my readers, you will find information here about my health (I have several autoimmune diseases), my family (I’m the imperfect mother of three imperfect boys and one imperfect husband), my education (I’m currently in my second year of divinity school and working towards chaplaincy or ordination), and my travels (I’ll go anywhere my passport needs to be stamped).

Buckle up buttercup and enjoy the ride!