Mrs. Ram's Jams

Tag: invisible illness

• 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

   

   

   

   

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  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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