Its not a story to make you sob, although some of you might come very close to it. It's one to inspire you, and make you aware you need to be very proactive about medical prescriptions. It's written by one of our regular contributors, crazyhorseladycx, who resides in New Mexico. We treasure her unique, straightforward style, and homespun wisdom, earned from the School Of Hard Knocks.
My Journey Through the Fog
My troubles began February 26, 2007. I felt fine ‘n had been out with the horses most of the day. It was our anniversary ‘n we had plans to go on a “double date” with a friend of the hubs as they had the same anniversary. I’d decided to feed the horses a wee bit early so I had time to get cleaned up fer our big evenin’. As I was walkin’ across the pasture to the feed barn, I felt an odd moisture slidin’ down my leg. No pains, no “urge”, “it” was jest there. Diarrhea. ‘Fore I could make it back to the house, several more accidents occurred. This is most embarrassin’, even when yer alone.
I couldn’t even make it outta the bathroom fer nearly 12 hours. By the 3rd day, any smells of food, chemical smells, movement of any kind would send me runnin’ -- it’d progressed quickly to the point I jest stayed in the loo, with a trashcan in my lap, as it was violent from both ends. I couldn’t even keep water down, small ice chips’d go through me ‘bout as quickly as I thought of puttin’ ‘em in my mouth.
The logical thing woulda been to go to the emergency room, right? Sure, how ya gonna get there when ya can’t get further’n 3 feet from the bathroom? By the 5th day, I had nothin’ left ‘n slept curled in a fetal position in an attempt to alleviate the pain. Dead folks’d come to visit. Most I didn’t know ‘n I wondered if my mind was jest playin’ tricks on me, due to the massive dehydration. I finally went to the emergency room, as I had nothin’ left ‘n could make it there without bein’ a total embarrassment.
Sheer panic set in with ‘em. My potassium level was nil, my blood pressure was 53/27. When they took it from standin’ to sittin’, the nurses jest went white. An I.V. was finally started by the anesthesiologist. They were flushin’ mega amounts of potassium ‘n saline solution through my veins at the fastest rate possible, along with takin’ potassium supplements. A total of 5 I.V.’s ‘n 12 potassium pills – in 6 hours.
The process was repeated several times over the course of the next few years, always leavin’ with another prescription of Ciproflaxin ‘n Prednisone. My white blood cell count was always a minimum of twice the norm. Li'l did I know, ‘n apparently the doc’s as well, this was from massive inflammation, not infection. It’d puzzled me as my temperature was always okay or at times jest slightly elevated.
I was finally diagnosed with Celiac disease in 2008. The solution seemed simple enough -- don’t eat gluten. It didn’t matter though how careful I was, I continued to have my troubles with the sudden onset of diarrhea, which would last fer days. I was finally diagnosed with Crohn’s disease late in 2008. The doctor’s who’s care I was under still would prescribe Ciproflaxin ‘n Prednisone fer ev’ry flare. Things started to spiral outta control.
Muscle spasms would rip through my body after such episodes. The slightest exertion sendin’ ripplin’ sensations, at time painful, throughout my extremities. Night drivin’ was the first to leave me, followed by vertigo while in a vehicle. It didn’t matter if’n I was drivin’ or someone else. Ev’ry turn ‘n ev’ry curve sent the world upside down ‘n it was horrifyin’.
It was mid summer ‘n I was on a hay-gatherin’ frenzy as yet another year of drought’d made it a necessity. No grasses grew upon the pastures ‘n I had critters to feed. The hubs wouldn’t assist me with it ‘n I couldn’t hire anyone out. The drought’d spread ‘cross three nearby states ‘n even California was sendin’ semi’s after our precious commodity. Ya jest had to be at the field, in line with many others, when the farmers’d start balin’. If’n ya were lucky, after waitin’ fer 5-7 hours, there might be enough hay left fer ya. Many times I left empty handed ‘n quite ticked. One can’t afford to pay someone to sit in the truck fer 8 hours ‘n do nothin’. My momma finally agreed to be my driver in the field, which was good. I’d gotten to where I couldn’t grab 2 bales, hop in the truck ‘n move it up ‘n repeat the process. It was bad enough I couldn’t write out the check when done.
This viscous cycle continued, ne’er knowin’ when it’d hit nor how severe it’d be. I’d gotten “used” to bein’ out fer a month or better ‘n havin’ to rely on others to tend my chores. I’d made my apologies ‘n returned horses to their owners, along with their fees. I was no longer physically capable to train ‘em anymore. I spent many an hour in emergency rooms, I.V.’s runnin’ full throttle. Batteries of tests with no answers. I told ‘em all I thought it was the ciproflaxin. They all assured me that was impossible, the only side effect with it was tendon damage ‘n rupture -- which I’m thankful ain't happened yet.
By late 2011, the neuropathy started. Innocent enough I reckon. I’d got to dry off after a shower ‘n it felt like a sock was wadded up ‘neath the balls of my feet. It started with the left ‘n then the right musta felt lonely ‘n joined in. Next, it was the hands. Touchin’ a towel was akin to grabbin’ a prickly cacti. When I told my doc of these things, I was informed it was the Celiac disease which caused it. Apparently, they’d sent another patient with Celiac disease to the Mayo Clinic in Phoenix, Arizona ‘n that was their conclusion. Basically, I was blown off. Another prescription fer ciproflaxin ‘n prednisone ‘n they sent me on my way.
Within 2 weeks, it felt as though I was havin’ a stroke or somethin’. Porcupine quills felt as they were constantly protrudin’ from ‘round my lips. The left side of my face had the feelin’ of droopin’, but wasn’t visible on the outside. I got the “yer fine, jest keep takin’ yer meds” line of b.s. that patients seem to get a lot of. By week 3, the numbness had spread from the bottom of my feet all the way up to the middle of my face. The sense of a boa constrictor snugly adhered to my rib-cage. Giant worms raced through my head constantly. The slightest touch of anythin’ made my skin feel as if it was on fire. My muscles wouldn’t work, I couldn’t stand or walk. Heck, I couldn’t even hold onto a small cup of water. My hair started fallin’ out in clumps, even lost my eyelashes (vanity speakin’, lol). I’d quit sweatin’ entirely ‘n the slightest change in room temperature send me into a whole new place in Hades.
The doc’s solution? They prescribed Gabapentin, the smallest dosage of 100 mg was to be started daily ‘n increased to 3 times as day. This was to supposedly help with the neuropathy. By day 3 on it, the hubs came home ‘n found me tryin’ to load my pistol. I’d been at it all day. I was done with the pain, the brain fog, the speech that failed me, the body that refused to work despite how bad I tried to force it. I’d tired of the pitiful looks from the family, the doc’s ‘n the constant demeanin’ from the hubs. Coz ya know, it was my fault I was so sick.
I wanted it to all stop. After an hour of tryin’ to comprehend the awful things that spilled outta the hubs mouth, I wished I’d been successful. The next day, he called ‘n told ‘em what happened. The solution? We’ll prescribe some anti-depressants, they’ll take a couple of weeks to kick in though. I jest quit takin’ ‘em.
I’d had no health insurance durin’ all this time. I’ve had cancer in the past ‘n even though I’ve been “cancer free” fer many years, it was considered a pre-existin’ condition ‘n not a single insurance’d take me on. Finally, the laws changed ‘n I was able to get on the with the Federal High Risk Pool. The premium was nearly $380 a month, but the deductible ‘n annual outta pocket was only $3,000.00. After completely wipin’ out my investments with all the tests, medications ‘n doc’s visits, this seemed a blessin’.
I talked my doc into sendin’ me to the Mayo Clinic, 687 miles away. Now that I had health insurance, they’d see me -- kicker was, the soonest they could “fit me in” was 6 months down the road. I’d gone from 135 lbs of steer-throwin’ muscle to 93 lbs of nothin’ but bones. I made ‘em send me to Scott & White in Temple, Texas instead. In two weeks, I was on my way. Shorter distance of only 483 miles. It was an exhaustin’ trip in mid November.
I was there fer 2 weeks, hospitalized fer the first week. They debated on if I had Guillen-Barre Syndrome ‘n then decided that, nah, I’d be dead already. I was poked, prodded, electrocuted (nerve conductivity tests, painful without neuropathy, sheer agony with it), scoped ‘n scanned from one end to the other. I was tested fer ev’ry disease known to mankind that could possibly be the culprit fer all the neurological hiccups. Nothin’.
They didn’t believe my thoughts on the Ciproflaxin toxicity. How could such a safe drug do so much damage. The outlook was bleak fer the most part: severe neuropathy, severe malnutrition (the body quit absorbin’ any nutrition from foods ‘n supplements), severe Crohn’s (the entire large colon now completely consumed, which’d started out some years back as ‘bout a 8” section).
On a happy note, the bone density scans showed not too much damage there. It was now known that I wasn’t nuts ‘n was allergic to all dirt, dust, pollen, ev’rythin’ green, brown ‘n purty much breathed. Beef, pork, dairy, cabbage, cashews ‘n an arms list of other foods were now categorized as well. The nutritionist had spent many hours creatin’ a plan to get me back on my feet with the nutrition. I had to by a Vitamix (if’n ya want one, go to their home page ‘n click refurbished -- they’ve some great deals on the spendy things), puree ev’ry single thing I could eat (all 12 things at the time) ‘n then run ‘em through cheesecloth to remove all fiber.
The gastroenterologist there wanted me started on Remicade immediately. She found that a colleague of hers that’d trained under her was practicin’ in Lubbock, Texas (100 miles away) ‘n he’d agreed to take me on as his patient. I started on Remicade that February 2013. Things started improvin’. The gut was better, I was able to walk ‘n such as the nutrition my body’d been robbed of was finally getting’ replenished. The speech was still hosed (sometimes my redneck-ease with a southern drawl goes country hoppin’ -- Scotland, Ireland, India ‘n Germany, jest to name a few accents) ‘n walkin’ was difficult, but no more boa constrictor, massive muscle spasms ‘n giant snakes swimmin’ in my head.
By the first May 2014, I’d started breakin’ out in silvery lookin’ scaly patches on my left leg. The staff at the infusion center (where I had to go ev’ry 8 weeks) said it was nothin’, not Remicade related. My gastroenterologist’d ne’er seen the likes of it either.
Within two weeks, I was covered in huge blisters over 60% of my body. My hands ‘n feet were solid blisters ‘n scaly rash. Even under the fingernails ‘n in betwixt each digit. I couldn’t walk very well ‘n was thankful fer the neuropathy as it kept that pain from bein’ felt. I was sent to three diff’rent allergists, more steroids -- creams, injections ‘n pills. They finally referred me to a dermatologist. The first’un said, “You just have sensitive skin and have folliculitis (infected hair follicles)”.
More steroids 'n ev’rythin’. By the 5th dermatologist (four biopsies later), it was determined that I had eczematous psoriasis. That doc wanted to put me on Methotrexate, which I can’t be on due to MTHFR gene mutations.
I did the research ‘n found that eczematous psoriasis was an extremely rare side effect from the Remicade. I ceased all meds. I found that povidine, calamine lotion ‘n corona worked the best fer the rash that now covered 90% of my body.
By this time, the rash had also invaded my scalp, nose ‘n ears. Purty much the only places that didn’t have it was my upper arms. Yepperz, I was a mess.
It took nearly a year to get rid of it. The gastroenterologist wanted me back on Remicade after I told him no to the other auto-immune system killers. Why? Coz they’re all well known to exacerbate/or cause neuropathy. I’ll not knowin’ly go down that path again.
It’s gonna sound odd to many folks, but it wasn’t my family that pushed me through this journey through the fog, one I still struggle with daily. It was fer the love of what I have left -- seven horses who love me unconditionally. To be in their presence is like sunshine fillin’ my body, even on the cloudiest ‘n darkest of days. I live fer ‘em. I know when I’m gone, they’ll be sold off, as the rest of my herd was done.
One day at a time is how I face this challenge. It’s ne’er known which body part’ll work or fer how long. Barometric pressure changes ignite the neuropathy, speech troubles, brain fog ‘n it awakens the sleepin’ boa constrictor ‘n it’s friends that swim throughout my body. I’ve been able to drive 3 times in the past 2 years. I refuse to get behind the wheel when I feel I’m impaired. When I’m unable to get out ‘n seek the comfort of a horses soft breath, the depth of tenderness ‘n understandin’ in their eyes, I can at least gaze out the window ‘n watch ‘em. My back yard’s become my sanctuary. I relish the risin’ ‘n settin’ of each sun. The rise ‘n fall of each moon. The simplest of pleasures that Mother Nature bestows, I want to witness it ‘n capture it on film.
What I've learned...
I’ve gone through 37 doctors since 2007 ‘n fired those so closed minded they couldn’t see. It’s yer right as a patient to do so. I will throw research in their faces, demand explanations ‘n fer ‘em to pursue the medical research I aint privy to. I will ne’er take the back seat to my care, nor any of my families as long as I’m able. The main lesson learnt? To NOT take high powered antibiotics unless it’s a life or death situation, a last resort. They kill all the good gut bacteria.
70% - 80% (dependin’ on which studies ya chose to believe) of yer immune system lies within yer digestive system. Even if ya have to take less powerful antibiotics, always take a good probiotic to replenish the bacteria ya need, coz even those do serious damage.
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