Mrs. Ram's Jams

Tag: invisible illness

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

  Posted at 10:20 am by Mrs. Ram Jam, 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 Mrs. Ram Jam, 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 Mrs. Ram Jam, 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

• Hello Ulcerative Colitis My Old Friend

  Posted at 11:41 pm by Mrs. Ram Jam, 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

• Chronic Illness: My Bad Experience with Plaquenil

  Posted at 1:43 am by Mrs. Ram Jam, on February 23, 2019

  

  At my biannual rheumatologist appointment in December, my doctor suggested I try the drug Plaquenil. Not only does it treat malaria, it also helps rheumatoid arthritis and Lupus. I have none of the aforementioned diseases but have positive ANA and other autoimmune red flags (sans a diagnosis). He warned it’s a well-tolerated drug but slow acting, taking about three months to kick in.

  At our visit’s end, he handed me informational printouts about it for homework and told me to call him when I made a decision.

  When I got home, I skimmed and scanned the side effects and the standard fare was presented: upset stomach, headache, rash, etc. One of its terrifying side effects is it can cause serious eye damage if taken for long periods of time. I conducted further research via Google, but concluded it didn’t seem overwhelmingly scary besides that whole hey-you-might-lose-your-vision thing.

  I talked to a friend who has Lupus and another who has RA who both take it. They said it mildly agitated their stomachs but overall had positive results.

  I deliberated over my decision. In general, I don’t tolerate medicines well, which is a lesser known fibromyalgia symptom. I don’t even take fibromyalgia medicine because it makes my muscle pain worse, causes extreme gastrointestinal distress, or gives me the spins.  

  But I trust my rheumatologist, and I gave him the go ahead to send in the prescription. I started popping my 200 mg pill daily.

  A mean a girl can dream that there’s a miracle drug for her, right?

  Five weeks into treatment, the backs of my arms started itching. Normally this isn’t too concerning. I have a tendency to get an I-inadvertently-consumed-something-with-wheat-in-it-rash in that exact spot. By Saturday though, my knees were bright red with clustered, itchy bumps. It kept me up Saturday night, and Sunday morning it spread to the back of my legs.

  When I pulled out my pill bottle that morning, it clicked. The Plaquenil had to be causing the rash.

  I sent a message to my doctor. Apparently because it’s a slow acting drug, it can take weeks for side effects to kick in–ughhhhhhh.

  Goober that I am, I thought as soon as I stopped taking the medicine the rash would go away.  Hahahahahahahahahahaha. It continued to get worse all week. Benadryl didn’t help.

  Friday morning, the rash had transmogrified into full blown hives up the back of my right leg. Lucky me! An allergic reaction!

  I hauled myself to a step-in clinic at the local hospital where the nurse practitioner explained that since I took the drug for six weeks it would take six weeks for it to get out. She gave me steroids for the hives and told me they could come back, which they did. Two days ago. So much ugh.

  Look, I realize I’m lucky; I had a mild allergic reaction. But now, I’m even warier of starting new medications–particularly if labeled as slow acting. Who wants side effects, let alone delayed ones, or even delayed allergic reactions? Who wants to be dealing with hives for six weeks (especially when there’s no honey and nary a queen bee)?

  I’m aware that was a bad joke. Deal with it. It made me forget I have hives for a split second. At this point, I’ll take what I can get.

  

  Photo by Pixabay on Pexels.com

   

   

   

   

  Posted in chronic pain, fibromyalgia, Uncategorized, writing | 3 Comments | Tagged allergic reaction, blogging, blogs, chronic illness, fibromyalgia, hives, invisible illness, plaquenil, positive ana, writing

• Is That My Invisible Illness, Am I Dying, or Is It Something Less Drastic Than Death but Still Needs To Be Treated?

  Posted at 6:35 pm by Mrs. Ram Jam, on August 3, 2018

  

  It’s three days before the new school year starts, and I have E. coli. For real. The bad E. coli–where antibiotics are necessary.

  Want to know what floors me? I was oblivious to the severity of the matter until Wednesday evening when my doctor’s office called and informed me.

  You’re probably thinking to yourself, Mrs. Ram Jam, how in the French toast were you unaware when you experienced the classic symptoms: nausea, abdominal pain, fatigue, diarrhea, and malaise? Are you also one of those women who didn’t know she was pregnant until she sneezed and a baby came out?

  To answer the latter question–no. But to answer the former–these symptoms are a mere fraction of my normal. I just thought my IBS was flaring with the fire of a thousand suns.

  I’m going to be honest; 85 percent of the time, I’m in a shit ton of pain. It could be fibromyalgia, IBS, Raynaud’s, or Meniere’s Disease induced. I’m not looking for sympathy or to complain. It’s my truth, and as always, invisible illness remains invisible if its sufferers remain silent.

  Because I’m in pain most days, it’s pretty damn tricky to determine if new or increased intensity pain is due to chronic illness or if it has a different cause.

  Overwhelming fatigue? Is that my fibro flaring because of a midsummer cold front storming across Louisiana or a vitamin B12 deficiency, anemia, or strep throat? OR DO I HAVE THE PLAGUE???

  Radiating tender point hip pain? Is that fibro induced too or a vitamin D deficiency and a case of weak hips that needs three months of physical therapy? OR ARE MY BUTT CHEEKS GOING TO FALL OFF WHILE I SLUMBER???

  Bowel habit shifts and abdominal pain? Is my IBS pitching a hissy fit because it’s impossible to control while traveling or could it be small intestine bacterial overgrowth or E. coli? OR DO I NEED AN EMERGENCY COLOSTOMY???

  Most of the time my pain is due to chronic disease, but occasionally it’s something else. For example within the past six years, I’ve dealt with all of the diseases, physical therapy, and deficiencies listed above (excusing the all capped crazy thoughts of course). I initially chalked all these maladies up to my chronic illnesses.

  I’m lucky this bout of E. coli coincided with a regularly scheduled trip to the gastroenterologist; otherwise, it could have gotten awful before I convinced myself I needed a doctor.

  So how do I tell the difference?

  I can’t. When the pain gets different, unbearable, or alarming for too long, I schedule an appointment, describe my symptoms to my doctor, and try to convince myself I haven’t contracted botulism in the interim.

  And that’s part of what’s terrifying for invisible illness sufferers. We live in a habitual game show entitled: Is That My Invisible Illness, Am I Dying, or Is It Something Less Drastic Than Death but Still Needs To Be Treated?

  Unfortunately, I didn’t win a new car this episode, just E. coli. Which might be the worst thanks-for-playing parting gift ever. Who’s producing this game show anyway? You’re the suckiest. I hope the network drops you midseason and you get E. coli too.

  (P.S. How the hell did I get E. coli? *shudders violently* Okay, universe, you can keep that secret for eternity.)

   

  Posted in chronic pain, fibromyalgia, meniere's disease, Uncategorized, writing | 3 Comments | Tagged blogging, blogs, chronic illness, chronic pain, fibromyalgia, ibs, invisible illness, meniere's disease, writing

• Fibromyalgia Flare Friday

  Posted at 10:18 pm by Mrs. Ram Jam, on April 27, 2018

  

  I’ve spent most of this week in fibromyalgia flare denial. But the tell-tale roaming muscle aches and spasms, the stabbing take my breath away jabs, the unable to form sentences or the inability to find the words I want to say attacks, and the overwhelming fatigue can’t be denied.

  Today, I’m on the downward slope of a five day flare.  

  I’ve managed to keep my fibro under control for two years, and I’m fairly successful containing it with exercise and diet.

  However, I’ve had right foot ailments, sesamoiditis and bursitis, since February, and I’m three weeks out of an orthopedic walking boot. My body is a wreck from walking misaligned for two months. My back is so stiff that a surfer could ride a gnarly wave with it. My left hip, a rusted shut nut and bolt, feels like Tim the Toolman Taylor is ratchet socket wrenching it unsuccessfully and brutally every time I take a step. My foot is mending, thank God, but my altered gait and the accompanying out-of-whack pain is definitely a flare-up offender.

  The second offender is the hit to my mobility. Normally, I can walk to keep the fibro pain at bay, but that’s impossible with a swollen big toe and an inflamed bone and fluid sac in the bottom of my foot. I normally average about 11,000 steps a day, but I rarely topped 5,000 during my boot stint–sometimes only hitting the 2,000 step mark. It seems counterintuitive, but the less fibromyalgia sufferers move, the more they hurt. And my body has declared anarchy because its walking rights have been violated. I’m hitting my average again, but the struggle and the pain sidecar has me feeling like I’m taking two steps forward and three steps back literally and figuratively.  

  Thirdly, my stomach is a disaster because of two rounds of prednisone and sundry anti-inflammatory drugs. Both are hard on tummies anyway, and often fibromyalgia sufferers don’t tolerate medicines well, experiencing side effects from them more strongly than other people do. I am no exception. My body abhorred every single prescription NSAID I swallowed and a couple locked my gut up tighter than Fort Knox. Ultimately, too many meds scalped my digestive track raw. When my stomach gets pissed for longer than a week, I know a fibromyalgia flare is in the future. The medicine has aggravated my IBS, too.  As a matter of fact, about 70 percent of fibromyalgia sufferers also have IBS (citation here). A parasitic symbiotic relationship, the two chronic illnesses are inextricable in my case.

  To finish, the previous three factors make sleeping challenging, and with fibro, lack of sleep makes everything: So. Much. Worse.

  I haven’t had to take a fibro day off from work in years. But twice this week, I didn’t know if I could physically make it to work, but I did.  I only sucked it up because we’re in the middle of state testing.

  I am feeling more myself today, and eventually all flares end.   

  Like I’ve said previously, I’m not writing to complain. I’m just writing to vent.

  And as always, it only remains invisible if we don’t discuss its existence.  

  

  Posted in chronic pain, fibromyalgia, Uncategorized, writing | 11 Comments | Tagged blogging, blogs, chronic pain, fibro, fibro flare, fibromyalgia, invisible illness, writing

• A Poem: Invisible Illness Idioms

  Posted at 10:57 pm by Mrs. Ram Jam, on December 8, 2017

  

  Because sometimes you need to vent when you have invisible pain.  Because sometimes haters are going to hate.  And because it remains invisible if you don’t talk about it.

  ---

  I’m a pain in the ass, full of shit, lend me your ear, and put a sock on it
  because of fibromyalgia, IBS, Meniere’s, and Raynaud’s chronic disease fits.

  I’m a pain in the ass,
  a daily debacle that will never pass.
  No matter how much I tweedle and wheedle,
  I smell something fishy and am on pins and needles.
  I carry the weight of the world on my shoulders
  and my body betrays me as it twitches and smolders.
  I’m a taste of my own medicine,
  but I can’t take any because it glues my innards together and turns my muscles to gelatin.
  I’m a pain in the ass
  that will never pass.

  And full of shit
  that’s hard to pass,
  leaving me feeling like a twit.
  I’ve got a gut feeling that sends me reeling.
  I can’t have my cake and eat it too
  without a flare up coming out of the blue.
  I don’t have a cast iron stomach.
  Most culinary delights leave my digestive track flummoxed.
  I feel like I’m eighty-six,
  and I’ve had to eighty-six Cajun concoctions in cast iron pots because of my tummy.
  Gone are all the foods that are satisfying and yummy,

  including salt,
  but that’s my inner ear’s fault.
  Go ahead, lend me your ear.
  I’ve got loads to tell you about my diseases that you don’t want to hear.
  Don’t get bent out of shape
  because I am bent out of shape.
  I’ll take your ears and attach them to my own with tape,
  so I can hear what you have to say dear.
  I’d love you to lend me your ear.  
  But I’m just a dizzy dame
  who is going slowly lame.

  I’d bend over backwards
  to be able to bend over forwards.

  And I’ll put a sock on it
  as well as gloves
  to get my hands and feet to stop it,
  my loves,
  from looking like they’re from a cadaver.

  But people still can’t figure out what is the matter.

  They say I’m full of shit and a pain in the ass
  and to stop being so crass.
  They don’t want to lend me their ears 
  because of their own piddling fears.
  They’d rather I’d put a sock on it.  
  It’s been listed first on my “how do I make my diseases easier for you” docket
  for years because you’d rather I’d wear your rose colored glasses.
  But now I’ll wear my rose colored glasses for fashion and call you a fascist.

  Because you think I’m a pain in the ass and full of shit.
  Because you won’t lend me your ear.
  And because I’m tired
  of putting a sock on it.

  Posted in chronic pain, fibromyalgia, meniere's disease, poetry, Uncategorized | 2 Comments | Tagged chronic pain, dizzy, fibromyalgia, ibs, idioms, invisible illness, meniere's disease, poems, poetry, raynauds

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