Mrs. Ram's Jams

Tag: ulcerative colitis

• A Plea From a High-Risk Friend–Please Stay at Home

  Posted at 10:20 am by Jeddarae, on March 21, 2020

  

  Please stay at home.

  Your friends with underlying conditions, the immunosuppressed, and the elderly thank you for your efforts. 

  I am an immunosuppressed 37-year-old mother with underlying conditions–high-risk alert right here. Please stay home. I can’t help that my body attacks itself. It’s been this way since high school. Please help me out by staying home. 

  I know it’s not any fun, and you’re concerned about free will, your rights being limited, and a litany of other complaints—all of which might make you angry. But please set emotions aside for the time being and focus on facts and logic.

  As an English teacher, I teach my students to get their information from reliable, unbiased resources and to ground their arguments in facts, data, and logical reasoning. I also teach them to get information from experts. And while emotion is a powerful argumentative tool, it is, in fact, weak on its own. Even though emotions are real and important, they can mess up judgment. 

  Ignoring the CDC, WHO, Dr. Fauci, and governmental recommendations are illogical choices because they are the experts providing facts. 

  And here’s a fact, one that I’ve already stated. I am one of those people they consider high risk. Why?  

  I have three autoimmune diseases. THREE! 

  One:  Meniere’s disease. 

  Two:  Ulcerative colitis 

  Three: an undiagnosed disease my rheumatologist monitors me for

  Number two concerns me particularly because I was hospitalized for it in February. My colon hates me. This flare, unfortunately, coincides with a pandemic. Lucky me. 

  Because my colon is broken, I am on two immune-suppressing drugs. TWO! Prednisone, which I’m on for two more weeks, and tacrolimus–an organ transplant rejection medicine. Prednisone, an anti-inflammatory, is bad news according to the CDC. I get to take these drugs during a pandemic. Lucky me. 

  Also, those malaria drugs that doctors are testing as possible treatment for coronavirus–guess what? I’m allergic. Last year, I was prescribed hydroxychloroquine (Plaquenil) for autoimmune disease number three and broke out in hives six weeks into treatment. So again, lucky me. (I want to reiterate the term “possible treatment.”)

  Please stay at home because it shows empathy–which is ONE thing that we need more of in this world and another thing that I try to teach my students. This pandemic isn’t about you–it’s about all of us. 

  ---

   

  ONE final thought:

  Please stop sharing coronavirus information via memes and unverified Facebook posts. Consider the information’s source. I am readily reading my doctor friends’ Facebook posts and trust their expertise, but if I were to share that information to you, then you share it to Facebook Karen, then Facebook Karen shares it to Facebook Chad, then how does Facebook Chad know an actual doctor wrote that post? In this scenario, the information is accurate, but lots of posts shared this way are fake or spreading wrong information–with no way to verify the author’s authenticity. Before hitting the share button, confirm the post’s reliability. Try to share information from trusted sources instead of second hand. 
  Posted in meniere's disease, ulcerative colitis, Uncategorized, writing | 3 Comments | Tagged blogging, blogs, coronavirus, covid-19, highrisk, ibd, immunosuppressed, invisible illness, meniere's disease, pleasestayathome, politics, ulcerative colitis, washyourhands, writing

• An Ulcerative Colitis Tale: What I Learned During My Hospital Stay

  Posted at 2:54 pm by Jeddarae, on February 8, 2020

  

  Hey! For those who missed it, I spent three nights in the hospital due to an ulcerative colitis flare. 

  I’d tried telling two different doctors at various times throughout January that my medicine stopped working, but nobody listened to me. 

  For a week before I was admitted, my doctor’s office ghosted me. I called. I emailed. Nothing. No answer. Radio static. (Long story here. If you want more details, call, text, or inbox me.)

  I felt like Demi Lovato singing “Anyone” at the Grammys.

  Turns out, shocker, that my colitis had spread further into my colon, and I needed a blood transfusion to replace the blood I had lost. 

  Because. Nobody. Listened. To. Me. Seriously. 

  Ugh.  

  But I won’t get into the entire story right now because:

  1. I’m still really upset.
  2. it should have never happened.

  Because. Nobody. Listened. To. Me. 

  ---

  Enough of the negativity. Here’s what I learned during my hospital stay.

  1. Beware the pretty pills. My nurses ooohhhhhed and awwwwwed over a lovely, jade-colored pill, presented to me in a tiny plastic cup. We never get to see colorful pills! Look how pretty! They said. All we ever see are plain-colored pills! Considering the sheer number of medicines overwhelming my system, I missed all the warning signs that this “pretty green pill” was the Green Fairy in Moulin Rouge. After achieving mind-blowingly high status twice in four hours, I, slurring my words, accused the nurses of slipping me roofies and refused to take more. Unfortunately, my mother called both times I was baked, and I had to hang up on her. Sorry Mom! Also, if you texted me while I was drugged, and I promised I would steal you some roofies too, come see me later. (Just kidding!!!!) (gif credit)
  2. If you spill your water all over your bed, you don’t get a new bed; you get put on a puppy pad.  I felt properly shamed. Don’t worry. At least they didn’t try to stick my nose in it . . .
  3. Teacher expectations are ridiculous. Sorry. Here’s the negativity again. What was I doing before getting a blood transfusion? Typing up emergency lesson plans. Posting student instructions on Google Classroom. Trying to line up a sub for the next day–while I had IVs in both arms. Just to make sure my students weren’t given short shrift by my emergency absence. How insane is that? Read what I just wrote again. Insane. Utterly insane. If you are outside the education field, I don’t think you’ll ever understand the pressures that teachers face. My absence also created more work for my immediate grade level team members, and thank you, 8th-grade team, from the bottom of my heart for helping.
  4. I am officially a vampire. I’ve got someone else’s blood running through my veins! Call me Bill Compton! Edward! Dracula! Bunnicula! Waiittttt. Why are the great vampires all dudes? I need to rectify this, Le-stat! You can address me as Rampire. It has a nice ring to it. (My brother, on the other hand, thinks this equates me with a mosquito, not a vampire, and I’ll need a reinforcement coven to convince him otherwise.)(gif credit)
  5. Never doubt the medicine of a good laugh. Two of my friends came to visit, made me laugh the entire time they were there, and brought me this hysterical card. My bestie from high school sent me these flowers with this funny card. And the Facebook-requested memes and videos brightened my days. Here’s my favorite gif that I received during my stay. (Sorry not sorry for the crass humor. This is hilarious.)

  And while humor helps, what happened to me is no laughing matter. If you suffer from any illness, whether invisible or visible, you are your own best advocate. You are the only person who knows what the pain feels like, and if doctors aren’t listening to you, keep speaking up–even if it feels like nobody is listening to you. 

  ---

  (I respect all doctors, and I am not doctor bashing here, friends. This came down to ineffective communication within a doctor’s office and between doctors’ offices and medical bureaucracy. What happened to me could have been prevented. I’m just relaying how unnervingly unheard I was.) 

   

  Posted in chronic pain, teaching, ulcerative colitis, Uncategorized, writing | 2 Comments | Tagged blogging, blogs, chronic illness, chronic pain, hospital, hospital stays, humor, ibd, inflammatory bowel disease, invisible illness, poop jokes, teacher, teaching, ulcerative colitis, writing

• A Poem About Ulcerative Colitis: The Ouroboros

  Posted at 2:01 pm by Jeddarae, on January 18, 2020

  

  What does ulcerative colitis feel like? Here’s my best poetic attempt.

  ---

  twisted under blankets to smother

  the bushfire 
  raging through the
  death adder
  hissing 
  flicking its forked tongue
  fangs
  puncturing smoke and blaze
  scarring its wake vermilion, bitter, black
  sloughing its cinders
  a phoenix-masked ouroboros

  twisted under fire blankets aching for the rain

  ---

  As always, invisible illness only remains invisible unless we talk about it.  I hope all my fellow chronic pain sufferers find their rain soon.

  

   

   

  Posted in chronic pain, poems, poetry, ulcerative colitis, Uncategorized, writing | 2 Comments | Tagged blogging, blogs, chronic illness, chronic pain, ibd, inflammatory bowel disease, invisible illness, poems, poetry, ulcerative colitis, writing

• IBD: The Only Things I Can Eat Without Feeling like Death

  Posted at 12:17 am by Jeddarae, on June 22, 2019

  
  

  Photo by Mona Sabha Cabrera on Pexels.com

  I need to vent. This isn’t some tragic “woe is me” post. Like I keep saying, I’m just trying to be honest about my experiences with chronic illness.

  I’ve been limited in my food options for years now kudos to an extremely touchy stomach, but due to my recent ulcerative colitis flare and the medicine I’m taking, my diet is even further reduced. I wanted to write some snarky rhyming poem about the things I can’t eat right now because I miss being able to inhale whatever I want. But that list is as long as Rural Route 1, and the only good rhyme with “no gluten” is “highfalutin’” (I guess I could rhyme it with “tootin’–but that’s the obvious choice when you’ve got tummy issues.).

  Here’s a list of what I’m currently, barely, tolerating:

  • White rice (Thank heavens for jasmine rice.)
  • Eggs
  • Ripe bananas
  • Overly cooked plain green beans.
  • Mushy zucchini
  • Boiled/sauteed spinach–no stems
  • Natural peanut butter
  • String cheese–one serving daily
  • Gluten-free bread
  • Gluten-free pasta
  • Potatoes
  • Tortilla chips
  • Thoroughly masticated almonds
  • Cooked carrots
  • Meat and fish
  • Add-ons: olive oil, vinegar, salt (a minuscule amount), basil, oregano, and ginger

  That’s. It. Anything else makes me regret eating it later. Garlic? Forget about it. Onions? You jest. Tomatoes? I’d need an intestine transplant.

  More and more, looking at some food or even smelling it makes me gag, and the only thing that I can stomach reheated is rice.

  Next week, I have a conference in New Orleans for three days, and I’m more than a little concerned about eating (and functioning afterward) while I’m there. Convention attendees might question my sanity if they find me curled up in a food-induced ball of pain in a conference room corner.

  Not eating isn’t an option. I’m still starvin’, Marvin! It’ll be torturous to be in NOLA and not eat charbroiled oysters, a muffelatta, or a Lucky Dog.

  I miss real culinary delights. I’d move mountains for a slice of lasagna, a gyro with tzatziki, or my mom’s curry chicken salad.

  Food shouldn’t make anyone hurt. It’s a basic need and one of earth’s greatest pleasures. And it’s a damn shame that it can make some people feel like knives reside in their innards. 

   

   

  Posted in chronic pain, ulcerative colitis, Uncategorized, writing | 9 Comments | Tagged blogging, blogs, daily prompt, daily word, daily word prompt, dailychallenge, ibd, inflammatory bowel disease, inhale, ulcerative colitis, writing

• Hello Ulcerative Colitis My Old Friend

  Posted at 11:41 pm by Jeddarae, on June 7, 2019

  

  I had a colonoscopy today. If you’ve ever had one, you can sympathize with me–they’re the WORST (Okay. Okay. Maybe not the worst, but they’re damn god-awful.)  

  Why are they the worst you might ask?

  • You can only have a liquid diet the day before. I’m the hungriest person I know, and liquid doesn’t suffice. By ten yesterday morning I had a raging food withdrawal headache. Not to mention the non-solid foods that are allowed like chicken broth (sodium-laden with hidden garlic and onion), sodas (sugar bombs), and popsicles (frozen sugar bombs) I’ve eighty-sixed from my diet because my sensitive tummy handles zilcho processed foods. But I managed to choke down lime Jello and bubbly ginger ale all day (P.S. Little Thing couldn’t handle my dietary complaints yesterday because soda, Jello, and popsicles all day sound delightful to a second grader. Don’t worry, she got her Schweppes, jigglers, and ice lollies on, too.) And you know the worst part? YOU CAN’T DRINK, SUCK, OR SLURP ANYTHING RED OR PURPLE, the two best flavors of all things liquid or gelatinous. Sigh.
  • Your innards need to be vacant. Yep. No intestinal occupancy. I’ll keep this brief because, well, ewwwwwwww, but my doc told me to take 4 laxatives at 3 p.m. and then drink 64 ounces of Gatorade (not fruit punch, harrumph, but lemon lime) mixed with a bottle of Miralax over the course of five hours. Sounds rip-roarin’ doesn’t it? When you’re already feeling shitty, pun intended and hence the reason for the colonoscopy, this adds insult to injury.
  • A doctor puts a camera up your booty. ‘Nuff said. Thank the heavens you don’t remember this part because the anesthesiologist knocks you out.

  But all bad jokes aside, he did discover that I’m having my first relapse with ulcerative colitis, an inflammatory bowel disease, in twenty years. This flare feels a bit different because it’s a mild form (Mild my ass. I still feel wretched.) called proctitis, only affecting the rectum.

  

   

  Now I understand that I may have grossed you out and talking about poop and colonoscopies might make you uncomfortable but:

  1. A wise philosopher once said, “Everybody poops.”
  2. Ulcerative colitis isn’t a bad stomach ache, IBS, or annoying diarrhea. It’s a chronic inflammatory bowel disease (along with Crohn’s) that can completely debilitate its sufferers. In high school it made me severely anemic, and I almost had to have a blood transfusion. I know people who have had parts of their colon removed and now have colostomies because of it and others who are no longer able to work because of their symptoms.
  3. When you turn 50, you get to have a colonoscopy too.
  4. And as always, invisible illnesses only remain invisible if we don’t talk about them.
  Posted in chronic pain, ulcerative colitis, Uncategorized | 11 Comments | Tagged blogs, chronic illness, colonoscopy, ibd, inflammatory bowel disease, invisible illness, proctitis, ulcerative colitis

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