Saturday, May 9, 2015

Grandma's Shoes

 Life in the State of Dying



            I kneel on the carpet, in front of the carefully lined up rows of plastic shoe containers. Each one labeled with the style and color of the shoes inside. In some styles of shoes my Grandma had bought five different colors, so she could properly match her shoes with her outfits.
      Most of the shoes won't ever enclose her feet again- the cancer has started to effect every aspect of her bodily functions and her legs and feet are painfully swelling up. Slippers still fit- barely.
     
        The day is late and cold. Although it is May and everyone should be out in their yards planting and weeding- people are preparing for a blizzard. So buckets cover delicate new plants and sheets are spread across flowers beds -- a sheet won't keep the cold, wet snow from damaging the plants- but the hopeful gardeners crosses their fingers and hope that Mother Nature isn't too brutal.
   
      My Grandma, who suddenly went from walking with a cane last week, to needing a wheelchair this week- sits in her pajamas- everyday she is less likely to dress, which for a woman who was always dressed in carefully pressed skirts and blouses- and the collar carefully adorned with one of her pins- it is an unsettling sight.

     She sits in her wheelchair next to me- holding one of Grandpa's shirts, an equally pressed long sleeved buttoned down Western shirt in white with a small floral print on it- but a masculine floral print- the colors in orange and yellow and red.
      Her fingers, which have become quite gnarly and slender in just the past weeks, plays with the fabric.
     "I should throw this out," she says, as her fingers tangle tighter in the fabric. "It's so thin bare, he can't wear it anymore."
    I wait, knowing from the far off look in her eyes that she wants to say more. Bean, who is helping me sort shoes and clothes, is patiently waiting, shifting back and forth on her feet, obviously in her teenage hood not sure what to say and for being Bean and having a habit of always saying the wrong thing- is practicing her nodding a lot this afternoon. She knows her great-grandma is dying- she knows we're helping her sort her material life from the journey she is embarking on- and she doesn't have the experience to say anything that makes this task even easier.

     And so she nods and without complaining- has been helping me vacuum my grandparent's house, and even scrubbing their bathrooms. There are very few words I can say to her, except, "good job kid."

   Grandma knots her fingers in the fabric. "I can't throw it away yet."
   I look up into her face. "Grandma, you don't have to. We'll put it on the shelf."
   "There's a story to it. When your Grandpa used to work at the church doing the lawn mowing, he would sometimes get attacked by bees. We finally figured it out it was only when he was wearing this shirt. They liked it."
    I chuckle along with her, remembering a time when my Grandpa wasn't bound by an oxygen cord and giant tanks of oxygen- when he could walk without taking deep breaths of air because otherwise he wasn't taking in enough breath to make his legs function. The deep guttural sounds he has to make to force enough air into lungs as he shuffles across the floor startled Abu at first- she thought he was going to die right then and there. Now I notices she discreetly watches him- ready to help if he should need it.
    
   I take the shirt and gently place it on the shelf. When they are gone, I'm not sure if I'll be able to toss the shirt- she has given it life, attaching a story to it. A memory. Meaning.
   Damn it. I didn't think helping Grandma sort her closet and drawers would be so difficult, but a few times I have to take a deep breath and force the tears back.
 
  "I can't believe it's going to snow," she says. "I didn't need to see snow one more time."

     Before she goes.

      "Now you get to see Grandma's secret." She says with a huge grin.
      I chuckle. "All your shoes?" It's no secret- I know she has a love of shoes and the dozen upon dozen of pairs attest to it.
     "Now I know where Bean gets her love of shoes from. Do you know when she was two I could keep her busy for hours if I gave her a shoe catalog?"
   Bean wrinkles her nose and then she laughs. She can't deny her love of shoes either. If she didn't have giant feet, she wouldn't mind trying on some of Grandma's shoes. They aren't old lady styles- they are fashionable and elegant and classy.

       Just classic.
   
     Bean helps me sort. We have a pile to try to sell to the consignment store, a pile for donation, and a trash pile.
   Only one pair of shoes goes into the trash pile- the others have been so well taken care of- they can be shared. If we had the same foot size, she would have given them to me- for interviews at my paper job. The pride I hear in her voice when she mentions my paper job. She has read every article I have written and saved all of them.
   "Front page, huh?" She smiles. My latest article actually made the front page just the day before and she mentions that when we sort her clothes she's hoping that there are some items I can wear for my professional career.

     
      Grandma is tired after we finish sorting the shoes, so the clothes will have to wait until after the weekend. Sunday is Mother's Day and I know my Mom plans on bringing her some wonderfully beautiful flowers in a pretty vase.
     Grandma's last Mother's Day. My Mom's last chance to give her mother something for Mother's Day. The day will be bittersweet.
     I know my Mom will not say what she really wants to say- sharing emotions doesn't come easy for her and I'm hoping that the flowers speak volumes to my Grandma.
   Mom has been going over there every day, cooking meals and tending to them.

Her chronic pain condition makes it difficult- love makes it happen. 

    When we go to leave, Baby Blueberry skips over to my Grandma and gives her a huge hug, she skips over oxygen cords and gives my Grandpa an equally big hug with tiny pudgy arms. She doesn't understand, but there is an understanding in her eyes that seems so wise for a two year old. She knows they need the love and in her generous spirit she gives it.
   Her easily given hugs thrill them and they talk about it with my Mom, who is staying to serve them the spaghetti she made, after we leave.

   In the car I tell the girls thank you for the help. Thanks to Bean for helping make their bed, to the extreme specific way my Grandma wanted it and for helping sort her shoes. She nods, and says, "the old people need help." A typical teenage nonchalant statement, but her patience and compassion she displays with them shows me so much more.
   Abu says she doesn't mind playing with Baby Blueberry while I do stuff and asks wasn't I proud of her for watching her for so long.
   Yes, I answer, thinking of their sweetness as they played together, but then my thoughts drift to the boxes of shoes in my car. I wish I didn't have to drop them off. To separate this material life from what comes next.
   But it comes.

  When I arrive home, I look around at the stuff that surrounds me and realize I don't own any of it. I'm borrowing it, using it, enjoying it, but one day- it gets sorted and divided- some kept- some tossed-
     and so I spend the evening dancing and being goofy with my girls and then get down on the floor and play unicorns and princesses with Blueberry.

   And I realize as I pen this blog, that for the rest of my life when I think about the process of dying- I will think about boxes of shoes, a certain teenager helping me put freshly laundered bedsheets on my grandparent's bed, well-loved shirts that aren't meant for the trash, skipping toddlers with pudgy little arms full of love, and a tired Mom cooking her parents spaghetti. 

   

Tuesday, April 7, 2015

Living Without Sugar Has Killed Me- Just kidding - Sorta

Week 2 -4 Without Sugar


Day 14 without sugar and I was hoping to be super skinny with fabulous skin by now. Hey, what's a blog if not a place for absolute honesty? And I know the current line of thinking is to love ourselves in our own skin no matter what, but steroids have given me a moonface, acne, puffy eyes and hair that goes between thinning and greasy- the person staring back at me in the mirror is not me. And the depressed person living inside this bloated version of me is not me either. So love is a little short around here at the moment.

I'm trying desperately to hide the way I feel about myself too, because I have a teenager and a preteen in the house- listening to every word I direct at myself. And their comments about body image are a mirror reflection of my comments- good or bad.

 Society, and media may play a big part in our children's idea of body image- but I'm afraid that Mom's view plays a even bigger part in her daughter's ideas of self.

So right now I feel like Crohn's has scored a few points and I'm at the end of the field, stuck in the mud, with a head trauma and no points to show for the pain. And the doctors have started to call, - twice now- bugging me about taking the Humira. 

I know they're just worried about my health. They don't make money off this, right? 

I still haven't figured out insurance. So even if I wanted to risk my health and take the Humira- I lack the financial resources to pay for it. The doctors will have to have a bit of patience for their difficult patient.

I am definitely in an Eeyore sort of mood. 

Day 21 without sugar- or mostly without sugar. It's so easy to cheat. Just one latte. Just one little cookie. But now I feel blah when I drink that much sugar or eat that much sugar. And pasta and bread has lost all appeal. There is no Italian in my veins because I don't even miss the pasta at this point. I've consumed one sandwich with bread in the last three weeks.  I'm starting to love Paleo 'sandwiches'- which are made with huge leaves of greenery. I know, it's just salad in more salad, but it's fricking good and crunchy and my stomach loves it. 

Day 28 without sugar. I was super depressed today and made a big bowl of comfort food- spaghetti with pizza sauce. A childhood favorite. There is something warm and comforting about slurping the long, tomato coated noodles, soaked in butter and sprinkled with black pepper. 
And nothing...
No emotional comfort...
No release of dopamine in the brain.
Just a heavy gut and a feeling of disappointment.

I have noticed immense improvement in my Crohn's, but I still have two areas in my gut that pain me- so I know they're still swollen slightly and that scares me. If I keep fine tuning the paleo, add the bone broth, which is suppose to be a liquid form of much needed minerals and nutrients for the human body- and if I finally figure out how to make a regular schedule of exercise work - than perhaps it will be enough. 

And perhaps it won't and that uncertainty is hard to deal with. 

So something that I thought would be relatively easy- giving up sugar- has became a inner look into my weaknesses- like a walkabout, but without the cool, travel across Australia story to go with it.  Hence, this flare up of my Crohn's has sent me on a spiritual journey of some sort and I am kicking and fighting it the whole way. While I struggle to find meaning and reason behind pain and suffering and poor health- both in my own life and the people I know around me suffering from worse things like cancer- I know that Crohn's is a formidable foe...

but I can be my worse enemy. Because there is no critic with a louder voice than the one in my own head. And she's not always nice. 

I think I'm going to ground her- to her room until she realizes that failure is more perfectly normal than trying to be perfect.



Wednesday, March 11, 2015

Crohn's, Sugar Addiction and Avoiding Humira

Week One without Sugar

 

Day Before the Grand Sugar Give-up: I indulge in not one - but two large coconut milk French vanilla lattes. This is on top of baked goods and a decent size serving of pasta.  There's nothing like overindulging before denying yourself. Hmmm, I have a feeling I'm setting myself up for failure if I have to consume vast qualities of carbs and sugar before giving them up. Am I too attached?


So in the last three weeks I have had the pleasure of undergoing another colonoscopy, more bloodwork, and an appointment with my regular GI doctor, who I had piled expectations onto, only to come out of the clinic feeling hopelessly depressed and unheard. 

The scope showed that inflammation was down considerably- due to the steroids. Which I'm about done with prednisone, I wanted Entocort because it has way less side effects for me and for whatever reason Dr. V, we'll call her, would not prescribe them for me. She was willing to write a prescription for everything and anything else but not what I asked for. I'm not sure why. But the side effects are driving me insane. My face is so puffy and moon faced, I don't even want to leave the house.

The scope also showed I had a mass of gross looking tissue all piled up in the area between my large and small intestine, which she snipped for a biopsy. This caused quite a bit of bleeding and I was about ready to go back into the doctor that night, but luckily it stopped. But the procedure this time wore me out and my body felt exhausted- on the inside. Deep inside. 

My blood work was showing improvements in hormone levels, iron levels, and inflammation markers were vastly improved- almost normal. But again, due to the steroids- what happens when I go off the prednisone? 

I had my appointment with Dr. M, we'll call him, and right away I knew he had talked to the other doctor and had already agreed on a plan for care, forget what I want. He wants me on the biologics, - end of story. I mentioned all my concerns and this is how the conversation went. 

"What about the side effects? Cancer?" I asked. 

"We've only seen cancer in a certain age bracket, young men between 20-30, also taking another immunosuppressant. Doesn't effect other age groups." He said.

What? "Well, I've been on Crohn's forums, chat rooms. And there are a lot of complaints about biologics. Concerns like allergic reactions?"

"Oh, yes that. Well, here's the deal. Once you're on it, you can't go off. If you go off, your body will form antibodies against it and yes, you'll be allergic to it and won't be able to take it." 

Mmm, so my body will hate this drug so much, it wants to reject it as soon as it can? I'm feeling better already.

"What about the other side effects people complain about?" I ask, listing them- cancer, fatal fungal infections, an inability to fight infections, even just colds and flus. 

"You shouldn't be on the forums. They're just full of desperate people that the drug hasn't worked for- the people it does work for aren't on there." 

So ignore other people's experiences with it. Don't address my concerns.

"What about liver damage?" I ask, even though he's getting annoyed at my questions.

"Only a hand full of patients had died from liver damage while taking it." He assures me. 

I sigh. Aloud. Staring at him. I'm not feeling any more confident about taking these medications. It's my past history. I react to everything. My grandma reacts to everything. It's in the genes. I'm not sure why. Perhaps it has to do with my messed up immune system. 

"In your professional experience, how many of your patients do you feel like benefit from this medication?" I ask.

He pauses for a second and then answers. "I would say 7 out of 10 see good results."

I nod, it's not perfect odds but better than I thought. Then he keeps talking. "Well, at least 6 out of 10 of my patients benefit from it."

All right, my odds just went down. To almost 50 percent. And why is he changing his statistics? 

Then we start talking cost. How much is this ghastly drug?

Only around $12000 a year. For the rest of your life. 

I think I would have swoon right there if I wasn't feeling so numb by this point. I certainty was biting the inside of my cheek to keep from crying. 

"How much?" I choke out. 

"Well, it's a shot at home, twice a month and each shot is at least $500." This is for Humira. Since I lost disability, I have no insurance. If I get on Hero Hottie's plan, this is the drug I am required by the insurance to try first out of all the biologics. So now my drug choices are being dictated to me by a paper pusher. 

"I have a $5000 deductible with my husband's insurance." I said, trying to wrap my mind around such an expensive medication. 

"Well, that's better than $12000." The doctor assures me with a smile. 

No, it's not. Not in my financial world. 

I agree to  blood work to make sure I don't have TB or hepatitis, because apparently if I do and I take a biologic, it can kill me. And in a month the nurse is going to call me and see what I've decided. This gives me time to figure out insurance, finances and such. I can also apply for the financial aid from the drug company.

But how can I commit to a drug for a lifetime? At that expense. Damn colon. It needs to behave.

So I think. And I ponder. And I cry. I cry in lattes, and glasses of wine, and I scream at God for a burning bush. 

And then I come upon the autoimmune paleo diet, that has been used successfully by some patients with Crohn's. No potatoes, no tomatoes, no sugar, no artificial anything, no grains and no lattes. 

And I think WHAT THE HELL, WHY NOT? 

The odds have to be just as good as the 6ish patients out of 10 or so, I'm the doctor making statistics up on the spot, chances anyway. I go to the forums again, sorry doc, and people's reactions to the diet are mixed. Some are on it and no drugs. Some have mixed it with drugs and find both work really well for them. And some said they couldn't stay away from the no-no list and the diet didn't work. 

Day One: I have bought garden worth of groceries for the week. Salad, veggies, some fruit, and sweet potatoes. When I bake potatoes for the family, I'll just throw a sweet potato in there for me. I'm ready to go. And the meals are delicious. 

Day Two: I dream about coffee and creamer, and wake up with a furious urge to drive to the store and buy some almond milk French vanilla creamer and drink it straight from the carton. Never mind it has 4 tsp of sugar for every serving. I NEED some sugar. I make some peppermint tea instead, say some prayers, and remind myself that I'm trying to find a more natural way to treat the Crohn's before I commit to, what I feel like is a drug of last resort. 

I start really reading labels. Calculating the amount of sugar in what I'm eating. What I'm feeding my family and I'm shocked. No wonder the sugar content is hidden in plain sight by listing it as grams instead of teaspoons or tablespoons. 4 grams of sugar is equal to 1 tsp.
The bottle of BBQ sauce I was using in the sloppy joes meal- I end up feeding my family 52 tsps. - yes, 52 teaspoons of sugar in one meal.
Yogurt: 4 -6 teaspoons of sugar per container
ketchup: 1 tsp sugar per 1 tablespoon

Wow, the sugar was adding up fast. No wonder I was addicted. No wonder my family was addicted to cookies and ice cream. Sugar just feeds on more sugar. 

Day Three: I'm taking a shower and using my pomegranate face scrub and it smells so sweet I start to think about eating it. Yes, eating my face scrub- in the shower. Okay, I just might be going crazy.
But not to get too personal, the bathroom part of the Crohn's is almost normal. What? I don't even know what this is suppose to be- but I don't run to the bathroom ten times a day and even the kids notice that I'm not desperately hurrying off to the bathroom in a madness of worry and frustration.

The doctor writes that "patient seems to understand" what he is telling her, in my medical records. I feel vaguely insulted, because I do understand- I'm just not happy with my options. I decide a third opinion in a big city might be worth the money and start to research for a doctor with a holistic approach to treating the Crohn's. 

Day Four: Baby Blueberry has kept me up and I have to function without coffee. But I can't, so I drink some. My Mom bakes cookies and I have three. But I pay later for my cheating. Perhaps the diet is working. I find some paleo cookies in the store made with almond flour and very, very little sugar. I buy one because they have chocolate in them. They're surprisingly good, if not overly sweet. And they settle well on the gut.

Day Five: Still find myself thinking about coffee creamer and lattes at odd points during the day. Suddenly I'm having trouble with my emotions. There is a lot of stress going on in my life at the moment, and without even realizing it- before I was handling my emotions by drinking more sugary creamer. Now I couldn't, and the emotions were much sharper, more painful, like barbs on a wire. I knew I had a habit to eat my emotions but I didn't realize it was this bad. 

I doubt my plan. What if I'm wrong and the doctor is right? What if what I need to do is take the medication and call it good. I have a dream that I'm looking at things from the wrong perceptive, but that doesn't tell me what is the wrong way. 

Day 6: I have never had this much control, even when I was in remissions. I'm starting to lose weight, which I desperately needed to do. The steroids had messed with my appetite and I had gained 5 pounds from taking them, except I was already overweight to begin with. Pasta and rice is starting to lose their loudness. I'm not even missing them. The lattes, well, that's another story. Even Baby Blueberry isn't consuming too many cookies.

I firmly decide that I'm experiencing something totally different in the state of my Crohn's on this diet and decide that I will continue with it, until either it's not working, or I get a third opinion and they can reassure me why taking the biologics would be my best bet. So I haven't decided against any drugs- I just going to try something else first. Besides, there is the fiancial aspect of the drugs, which I haven't figured out yet anyway. 

Day 7: The week was worse than I thought and better than I thought. I wonder how I can be so addicted to a food product. Because sugar is addicting. I'm still craving creamer- for the sweetness. But perhaps sugar is bad for you- it is processed and bleached. How can putting a bleached product in your body be good for you?


I decide to give it another week and see what happens. And I buy a bouquet of flowers for the kitchen instead of something sugary to snack on as a treat after grocery shopping.They are bright and beautiful and haven't gone to my thighs.