I just noticed "die" is the first part of diet.

It has been a nightmare. It is sapping my energy and depressing me into states of melancholy and self-loathing. I can’t stop thinking about the pure misery of it.

It is a diet. A terrible, spawned-from-the-devil, diet.

I’m on day three.

Yes, I just said three. That is “all” you say? Oh, don’t you dare! I will punch something angrily! I will cry despairingly.      ...For the love of God (who I do love), let me have a cup of coffee. With lots of cream. Or a hunk of bread. With lots of butter. 

Alright look, I might be getting a little dramatic. And perhaps ever so slightly delusional. But I’m really hungry.

Did I mention I'm on a diet? Yes, so it’s day three of no: wheat/gluten/yeast, dairy products, eggs, almonds, oats, corn, beans, bananas, pineapple, coffee, chocolate… or, roughly classified as: food.

My blood recently tested as having a reaction to all of those foods and so this is a couple month to perhaps a lifetime, cold-turkey... bah, turkey: one of the few foods I can eat... elimination to help with some residual arthritis/post-cancer problems.

On day one of said diet I was very late for work because, instead of getting up to face the day – mainly the task of trying to find something to eat, I laid in bed hungrily instead. You don’t have to eat if you’re (pretending to be) asleep, right? Later in the morning I indulgently went to Whole Foods to console myself with a $7 (gross) hemp smoothie to go with my frighteningly expensive one bag of groceries – only to realize the smoothie had banana in it and so was off my list. I almost slumped down onto the eco-friendly floors and cried out from my knees, “whhhhhhy?”

I have slogged through some pretty horrendous things in life, (like many people.) If I wasn't so hungry right now, it might be amusing that a very restrictive diet is undoing me. Plus, I have been dragging an aching body around for five years now; the immobility and painful hobbles this diet is meant to help should be bolstering my resolve. I should be standing on my mountain of earned badges of fortitude, pumping my fist into the air while chanting, "I got this too. Yeah Baby!"

But really, I’m just hungry. (Sorry, did I already mention that?) And I’m tired of a body that I don’t understand and can’t keep up with me.

It used to bother me that I had become an emblem to incite gratitude in others – as in, “At least I’m not her.” I don’t mind that so much anymore. (But, Dear Husband, please drink your coffee somewhere else before I strangle you to merely get a good whiff of that deliciousness.)  Right, so to the contrary, I’m glad I can help. Because, all jokes aside, I can help you. And so, not for the sake of garnering your sympathy but for brightening your perspective, I tell you this story. (And all the others.) I can help you realize your day is not so bad, your problems not so big. Your pain is not so deep. And when it is or when they are, you too will survive.

You might not be pumping your fist through it, but you will wake up again tomorrow – and maybe then the smoothie won’t have banana in it. Or even better, someone will make some bacon.

If you have any tips, favorite recipes, or comments, please share!

There's a Grandma in my Bones

photo by Little H, age 4

I’m 31 years old. Sort of.

I mean, I've been alive for 31 years. But I’m an awfully lot like the 60-70-somethings I occassionaly attend a restorative yoga class with.

I roll up in my CR-V, car seats and cracker crumbs and all, and squeeze right in with the Cadillacs and Mercedes, parked ever so slightly crooked in their spots. I inevitably meet my instructor at the parking ticket machine and once again help her through the process of purchasing an electronic parking pass. And, also once again, I attempt to dissuade her from saving the receipt until kingdom come because I’m pretty sure “technology” is in fact not going to fail her and result in a retroactive ticket she doesn't deserve.

As we make our way from the parking lot back to the yoga room, there’s a lot of chatting and slow ambling. I want to speed things up and get us started. Actually, I generally want to speed things up the entire 1.5 hour class.

There is a lot of sitting, breathing, and stretching. Did I mention it was a yoga class? Anyway, not my favorite way to spend 90 minutes. I rarely break away from the responsibilities of my job and my two young children to do anything by or for myself. This is holy time I don’t want to waste. (And, okay, I'm kind of a Type A personality.)

I don’t like meditating. I have found that I breathe just fine without devoting thought to it. And I prefer my stretching to be a warm-up for some sort of strenuous exercise to follow. But I come here because I need it, because I know that it is good for me. It helps my troubled body feel a tad bit better, even if only for a few hours.

So much of me wants to be outside running, to be fast and free. To be 31. But that’s all in my head, because my body fits right in with grandmas around me. You see,

    * Inflammation rolls around in my hip and rib joints, making me ache and creak and move gingerly.

    * I lack hormones and thereby the ability to regulate my own body temperature appropriately. To compensate, I habitually under-dress and am cold 95% of the day, because the other 5% is flashes of torturously hot.

    * I take a medication (to help keep the cancer away) that causes bone density loss.

    * And, the water balloons on my chest and chunk of lymph nodes cut out of my underarm really put a damper on my agility. High impact exercise is generally not reasonable.

So, like I said, I fit right in here. I am a 31 year old, trapped in a 70 year old body, that is actually 31 years old.

We’re stretching slowly from side to side. We’re balancing. We’re breathing.

(Sigh.) I was never a very good runner anyway.

 

One Day at a Time

I would love to say that with the growth of the baby inside me, all the bad clouding my days faded away…. as though a magic fairy had waved a wand of normal and good across my strange body. But of course, that simply wouldn’t be so – it simply wouldn’t be real life.

Most certainly, I am lifted out of sorrow with a deep and moving hope. But I do still wake up every day to maneuver the tribulations before me - as we all do - stubborn, pervasive troubles.

The radiation side effects are primarily localized skin irritation and progressive fatigue… manageable. But meanwhile, arthritis symptoms have taken hold of my chest and hip joints, debilitating me into a slow-moving, rather defeated cripple (who is still pretty bald.)

Anti-inflammatory drugs are not safe for use during pregnancy. Instead, I am using a walker to get around. I am having a particularly difficult time accepting that, even after the cancer treatments conclude, I may still have this awful disease of Spondylitis – accepting that I may be like this forever.

At this point, I haven’t yet shed Cancer Patient from how I see myself and perceive others to be seeing me. I keep a steady stream of self-deprecating jokes on-hand… I am, after all, a crippled, pregnant lady, who has cancer. Does it get any more physically handicapped than that?

Inside, I’m appalled this is who I am. On the outside, well, just give me your parking spot.

One day at a time. …Unless someone has a wand I can borrow?  

Eclipse in the Snack Food Aisle

I’m ambling through the grocery store, trying to think of everything we could possibly need so I don’t have to come back in four days. 

Little H is with me, as always. I resorted to bribery to get him into the cart without argument this evening, since his daddy lets him walk, a concession I’m not willing to make. Thank goodness for that mini lollipop I had the foresight to shove into my purse. (It’s late in the day and we’re both tired; don’t judge me.)

I’m midway through the snack food aisle when my cell phone starts to ring. I decide to answer it, in spite of my aversion for public cell phone conversations, and am rewarded by finding my Rheumatologist on the line. (The doctor I see for arthritic problems.)

Missing a doctor’s phone call is like missing an eclipse - it doesn’t occur often, it's gone quickly, and there is no recreating it. Catch the call or make an appointment; you’ll never get a doctor to call a second time or get on the line when you call back. Not for, oh I don't know, another year or so anyway.

I am scrambling for a receipt, coupon, or other shred of paper to take notes on, if necessary. We’re discussing the possibility of my going back onto Enbrel, the shots I give myself to quell the inflammation in my joints, while I’m simultaneously undergoing chemotherapy.  Dang, my body is messed up.

Basically, I’m describing my intimate health issues at 6 PM in the middle of a crowded grocery store. People are wheeling by in search of potato chips as I talk about my upcoming mastectomy date.

You need some crackers? Right there by the bald lady talking about drugs and surgeries. 

At least Little H is being quiet. Actually, he’s pulling boxes off the shelf and throwing them into the back of the cart. Packages of cheese crackers and some kind of Mexican cookie are flying in with a pace that suggests he expects me to intervene at any second. Whatever. 

After I hang-up, it takes me a good 5 minutes to empty my cart and restock the cracker and cookie aisle, but I’m jubilant that I’ve talked to the doctor. I avoided an office visit in a season that is crowded with medical appointments and copayments.

We decided I won’t be going on Enbrel again until post-surgery, a decision I’m comfortable with. I can continue to manage this spell of pain and immobility, because how much narcotics does a person really want to put into their body at once? And who knows, maybe once the cancer is out of my system, so too will the need for an autoimmune disease drug be relinquished.

Cheese cracker anyone?

Downward

Winter turns to spring. I’m trying to accept my lot and move forward.

My husband and I decide to try for our second child, the little one who will complete our family. 

I do still have days where I’m lost in contemplation over self diagnosis, and I decide I better have everything I can think of checked out. I make an appointment to see an OB-GYN to have a hard, painful mass in my left breast looked at, get an annual exam, and while I'm there, pick up a prescription for prenatal vitamins. 

 There is a six week wait before I can get in.

When I do finally see the doctor, I leave with an ultrasound referral to look into the lump "just to be sure" and a prenatal vitamin prescription that will never be filled.

Life, Derailed

The weeks are passing and I am getting no better.

The pain with every movement is excruciating. I am using a walker or a wheelchair to get around. I am banging against the walls of a broken body, trapped in immobility.

My parents start watching my son more frequently. My husband starts falling behind in his work. I am growing increasingly frustrated.

I am harboring adamant hope that the right doctor will figure out what’s wrong with me, give me the correct prescription or adjustment, and then everything will be normal again. But why is it taking so long? 

In the meantime, I’m missing out on my life with regularity. 

 



After months of misdiagnosis and severe immobility - months of terrible - I am diagnosed with Ankylosing Spondylitis, or "something resembling it."

Spondylitis is an autoimmune disease that causes chronic inflammation of joints. What I hear is: there is no end. There is no cure.

Confused and in disbelief, I am reduced to retching sobs many, many times over the coming weeks. I don't believe the real ailment has been found but am also losing hope that I will ever be set back onto the tracks of a normal life again.
I see my everything as hindered with no end... Missed walks, hikes or exercise of any kind, attractiveness hindered by an awkward gait, the potential inability to have and take care of a second child...

* * *

I learn to give myself weekly injections of the drug Enbrel and do gain immediate relief from them. I do my best to move ahead and accept my lot, but the disbelief never goes away. I still think I haven’t seen the doctor yet who will get this right - who will return me to the normal I had always known.

Life, Derailing

It hurts when I sit up in bed.

There is un-ignorable aching springing from my ribcage and from the right side of my lower back. I feel strange; the pain is unrecognizable to me and I can only attribute it to an accident or a fight that did not actually occur. Could something (or some things) have happened to my body yesterday without my knowing? Did I get jabbed in the rib cage? Did I pull or strain something in my lower back?

It hurts every time I move my legs; I can’t take a step without limping to compensate. What is happening?