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The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims.  Y'know that feeling eve...

Saturday, December 22, 2018

Gluten Free Triple Chocolate Cookies




Ingredients
1 1/4 cups softened butter
2 cups granulated sugar
2 large eggs
2 cups gluten free all purpose flour (I use Bob’s Red Mill or a mega bag from Costco)
2 teaspoons vanilla extract
3/4 cups unsweetened cocoa powder
1/2 teaspoon baking powder
1/2 teaspoon baking soda
1/4 teaspoon salt
1/3 cups mini chocolate chips
3/4 cups dark chocolate chips/morsels
1-2 cups white chocolate chips


Baking Instructions

Preheat oven to 350 degrees Fahrenheit
  • Using a stand mixer or a hand mixer, cream butter and sugar together on low-medium speed.  Once combined, add eggs one at a time and mix in between each egg, then add and mix in vanilla.
  • In a second bowl, lightly whisk together flour, cocoa powder, baking soda, baking powder, and salt.
  • Gradually add dry ingredients to wet ingredients and mix until well combined.
  • Mix in chocolate chips (add as many as you damn well please, I won’t judge)
  • Chill in fridge for 30 minutes
  • Drop 9-12 small balls on a parchment paper-lined baking sheet
  • (Optional) add 3-4 white chocolate chips to the top of each dough ball
  • Bake for 9-11 minutes
  • Let cool most of the way before removing from baking sheet

All I'm gonna say about these is that they're the best gluten free cookies I've ever had.

Saturday, December 15, 2018

5 Tips to Survive Chronically Ill Holidays



The holidays and chronic illness do not mix well on any level, so here are some of my tips on how to survive the holidays without having more physical and mental breakdowns than necessary:

1. Keep in mind that you DO NOT need to celebrate at all.  This tip may ruffle some feathers because the holidays have been so deeply ingrained in us as staples of our lives that we often don't even consider the fact that we technically do not have to celebrate at all if we don't want to.  Notice I'm not telling you not to celebrate, nor am I even suggesting that you not celebrate.  I am focused on the mindset here.  Because if you keep telling yourself that you have to do xyz and you have to celebrate in all the ways you did before you got sick, you're gonna have a nervous breakdown (trust me, I've been there, it aint fun).  You're setting your expectations too high. BUT if you tell yourself "wow I don't have to celebrate at all" you're setting the bar super low for yourself so that everything you're able to accomplish is a huge victory and what you're not able to do doesn't matter in the big picture because just showing up is an accomplishment in and of itself.

2. Plan everything out ahead of time. If you do decide to celebrate, remember that you know what your body is capable of better than anyone else, so budget your time wisely.  For example, if you have Christmas traditions like baking cookies or going to Grandma's house, plan ahead so that you can save up your energy both beforehand and during.  Don't use up all your energy on cookies.  I personally have like 6 things to bake before Christmas so I've set it up where I can bake every other day and (hopefully) get everything done without being worn out by Christmas.

3. Vocalize your needs to the people you're celebrating with. This one might be hard depending on how understanding people are of your chronic illness.  Some people just don't get it, but that shouldn't keep you from standing up for yourself and doing what you need to do to be comfortable.  If you need to have the celebration at your home because you're more comfortable there, let people know that.  If you can't cook anything, you need help transporting presents, or you need to schedule dinner for 5 o'clock instead of 3 because you need a nap, tell people.  If they can't handle your illness needs, that's on them, not you.  It's best just to vocalize what you need because you're your own best advocate and it's important to look out for yourself.

4. Don't be afraid to hide somewhere for an extended period of time if you need to.  I can't tell you guys how many holidays I've hid in the bathroom for a while (like 30+ minutes) just to give myself a break from people.  It helps me keep from being overwhelmed/overstimulated and if I'm feeling really sick the bathroom's kind of the best place for me anyway.  You don't have to hide in a bathroom though you can hide in your room, any unoccupied bedroom of a family member's house, or even go hang out in a parked car for a while I won't judge.

5. Take rest breaks and also wear comfy clothes. The holidays are such a go-go-go time of year you need to make sure to rest.  I suggest scheduling time to rest on the actual holiday, but also don't be afraid to rest spontaneously.  If plans change last minute and you can't go to IHOP on Christmas Eve because you went to church and that took a lot out of you, by all means just go on home to rest.  Do what you need to do to not be miserable.  In terms of clothes: you don't have to wear jeans if they hurt you, end of story.  And if a family member "can't get behind this whole sweater and legging thing you got going on" (yes that is a direct quote that was said to me) kindly tell them to fuck off because comfort is key.

The holidays do not need to be amazing, fantastic, enjoyable for everyone, but I think the least we can do is try to make them tolerable, and I've found that these tips help make them tolerable for me.

Wednesday, December 12, 2018

Why I Hate Christmas

Hi I'm Kayla and I hate Christmas.


Yup, that's right. Go ahead, call me Scrooge, call me The Grinch.  I am immune to your taunts because I simply do not care.

I don't actually remember ever loving Christmas.  I liked Christmas day as a kid, but even then I didn't love it, nor did I like the time leading up to it.  I think a lot of it had to do with my Panic Disorder and general anxiety.  Christmas is a crazy overstimulating time for people who get overwhelmed easily.  There's always so much going on and so many bright lights and sounds it just made me unbelievably anxious and uncomfortable. 

I always HATED going out to look at Christmas lights.  I could not (and still can not) understand how it isn't widely considered weird to drive out of your way to neighborhoods that are not yours to drive agonizingly slowly past (or, God forbid, get out of the car and STAND outside) strangers' houses just to look at an overwhelming array of fluorescent lights.  I don't think I'll ever understand how that's considered an ok thing to do.

I also hate the commercial side of Christmas and how it's shoved down our throats as consumers starting in motherfucking October but honestly that could become a whole post entirely so I digress.



Now that I'm older and chronically ill on top of mentally ill (which is such a fun combination to live with, might I add), I hate christmas even more, but on the plus side I do have valid excuses to get out of doing some things I don't like to do aka looking at lights.  The end of the year is super busy for me and my family.  Starting in August we have a birthday and/or holiday every month for the rest of the year.  So by December I'm totally burnt out, which is a huge bummer for me because my mom's birthday is Christmas Eve, and then there's Christmas and then New Years Eve, so I celebrate those holidays on very little energy.

Since becoming chronically ill, I've been incredibly sick at the end of the year.  The past 3 Halloweens, Thanksgivings, and the past 2 Christmases I have been in major flares.  This takes whatever tiny bit of fun Christmas has left in my book.  So in a future blog I'll give y'all some tips on how to make the best of holidays when you're chronically ill, but at least now you all know why I'm a self-proclaimed Christmas despiser.

Wednesday, December 5, 2018

My Illness Journey Part 6: Paralyzed Stomach





Hi I'm Kayla and I have a pacemaker for my stomach.

I bet most of y'all didn't even know they made those.  Well neither did I until late last year.  Around the same time my neuropathy began improving, my stomach died, because of course it did.  No really it just up and stopped stomach-ing.

I got referred to a Gastroenterologist and got what is affectionately known in the medical field as a "double dip" (aka a colonoscopy and endoscopy at the same time, aka they stick a camera up your butt and down your throat). Lovely.  That showed nothing so on to the next test: a smart-pill endoscopy to show my small intestine.  I literally swallowed a camera while it was flashing.  It never made it to my small intestine, it just sat in my stomach for 12 hours.  From this I was diagnosed with Gastroparesis.  That translates to stomach paralysis.

(Lemme just say that after all these gastrointestinal tests, I have consumed my fill of disgusting liquids for this lifetime; good Lord, there has to be a better way to clean out your bowels or consume contrast for a CT.)

I was referred to Motility Specialist at USC.  They have a whole Gastroparesis center over there so they were incredibly helpful and full of options.  Once my stomach died, I unintentionally lost 35 pounds in less than 5 months.  It was insane.  I couldn't eat anything besides baby food and frozen yogurt, and I could barely keep down water.  I was malnourished and essentially starving to death.  I ended up in the ER for fluids because I was so dehydrated, then the USC doctor prescribed at-home saline infusions so I got 3 bags of saline per week since I couldn't consume enough water orally.

I got a Gastric Emptying study to confirm the Gastroparesis (in this test you eat a radioactive egg and sit around for 4 hours... fun!).  Once that test came back, I was scheduled for surgery to implant a gastric pacemaker/neurostimulator and in the same surgery the doctor performed a pyloroplasty which opened up my pyloric sphincter so food could empty from my stomach more easily.  The surgery lasted 4.5 hours and was performed by a robot which is pretty cool actually.  The recovery was not so cool.   I ended up spending 2 nights in the hospital, during which I broke my non-vomiting streak of 12 years.  I literally hadn't vomited since I was 8 years old.  All that work went down the drain.  Anyway we spent a few months fiddling with the pacemaker settings and 7 months later it's finally manageable.  I now go in to see my surgeon bimonthly to get the pacemaker checked and to adjust the settings.  I will have to get the batteries changed via surgery every few years, but for now I'm doing ok.  At least I can consume water orally.


OK I'M FINALLY DONE WITH POSTING PARTS OF MY JOURNEY AND NOW I CAN POST MORE INTERESTING STUFF! Thanks for sticking with me through all these parts I just wanted to split it all up in easy-to-read portions but also keep it all together in terms of uploads.  I can't wait for you all to see what cool blog posts come next!

Saturday, December 1, 2018

My Illness Journey Part 5: Relearning To Walk


Hi I'm Kayla and I have had to completely relearn how to walk.

By the time I got a consultation appointment at the Loma Linda Neuropathic Therapy Center, I was not only completely wheelchair, house, and bed-bound, but I was literally unable to stand for 10 seconds without passing out.  I had gotten so ill that I was beginning to lose hope.

Then, I met Dr. Bussell, a man who knows more about neuropathy and the inner functioning of the human body than any doctor I've ever met.  He had created a new, non medication-based technique to treat neuropathy which involves putting pressure on major blood vessels in order to redirect blood where it needs to go.  Kind of like a far more intuitive and customized compression sock for your whole body.

The doctor and his colleagues assessed me and quickly began to realize that my case was incredibly severe.  Basically, my heart was unable to pump enough blood to my legs or head, which is what had been causing my pain, dizziness, everything. 


Immediately after the very first treatment, I was able to go out to lunch for the first time in I don't know how many months.  It only went uphill from there.  I began going out to Loma Linda 3 times a week, and I was given instructions on how to perform treatment on myself at home.  In a matter of weeks, the 10 seconds I was able to stand increased to 20, 30, 60 seconds.  I was overjoyed when I was able to stand for a full minute!  Then I began taking small steps.  Walking just a few steps at a time.  Building up my body's endurance slowly but surely. 


I was still in a wheelchair most of the time, but being able to stand up out of it and walk a few feet was such an incredible feeling.  I was diligent with my treatment and although I was still very sick, I was in a far better condition than I was before.  Dr. Bussell was always astounded by how complicated my case was and how difficult it was to treat me because my body was in such a bad place to begin with.  I can't even tell you how many times he mumbled "what the hell" under his breath as he looked at my arteries on the ultrasound screen.  My ultrasound results always showed numbers WAY out of the normal range and it was so amazing for me to see that because all of the other tests I had done up to this point never showed anything.  All my other doctors were just looking in the wrong place.



I began that treatment in August of 2017, and by January of 2018, 5 months later, I was able to dance at my best friend's wedding.  The transformation I made was utterly amazing and although I am very far from cured, Dr Bussell considers me one of his biggest success stories.  That treatment was totally worth the insane amount of money it cost (it was out of pocket because it wasn't covered by insurance... insurance never covers the important shit), and I feel so fortunate to have found this amazing doctor.


I have one more part of my story to go after this so stay tuned...