I believed my doc when she said , "keep far away from gluten and you'll be just fine." I believed when reading other folks blogs, forums in support groups, etc that just eating right, watching for cross-contamination, that I'd be just fine.
Having been diagnosed for almost 4 years, I am not well. In the beginning it was ignorance that kept me in trouble. Family members who didn't read labels, or ignored the risk. I spent the 1st year with one crash'n burn after another. We finally set perimeters, squeezable condiments, my own "personal" butter bowl. I constantly am scrubbing the counter tops, cleaning everything in the kitchen that could have been touched with "gluten hands" in fear.
I've tired of "wow! what can you eat?" The last "girls nite out", my "friends" took me to I Hops. An FYI, their tea is gluten free, but they don't promise that it's not been cross-contaminated.... Cruelty to dumb animals is what I'd akin that experience to. Needless to say, those ladies don't speak to me, although I did not complain and visited with them while they ate.
I have cooked lovely meals for holidays, so the family doesn't have to do "without". They tell me it's tasty, some of it better than the gluten laden breads of my past. Yet, there are family members who refuse to come and dine with us. Perhaps I've a warped sense of holidays, as I always figured they were to be spent with family. Sharin' and carin'. I do not discourage them from bringing whatever they'd like to these gatherings. Maybe I just expect too much from folks....
These are the times of alienation that I feel. Shunned by the ignorant. Giving me a sense of wrong doing. I did not choose to have food allergies. Why should I continue to feel guilt for a body that doesn't seem to work. I do my very best, and continue to strive for the day of wellness. Even it's not the level from the past, I'd like to be self-sufficient, tend my horses, go pic grabbin', do a lil bit of livin' for a change.
I have become a burden to my family..
Friday, August 31, 2012
Thursday, August 30, 2012
Improvement continues?
The sleeping habits are still a mess, falling adrift around 10pm and awakening by 3am. But I am sleeping and that's a good thing. Wish it were more, but will not fret on it.
Somehow I managed to shrink my blogging screen? Have been told that I had to have done it via the built in mouse pad on the laptop.... bless her heart for tellin' me how to fix it, worked like a charm when all else failed.
Had a fairly decent day. Used the cane more than I cared to, but was most unsteady outdoors. Seems the numbness & pain settled into the arms, from shoulder to tips of fingers on both sides. Intermittent spasms in the legs, not painful but mostly annoying.
My eyes feel puffy, but look normal according to the hubs. Dry, irritated, as if I've been out in one of our spring dust storms. Eye drops give relief for about 5 minutes. Of course, could be because more have wound up down my face rather than in my eye. Not enough coordination to pull it off.
There's some abdominal spasms this evening, some quite sharp and they double me over. I hate this. Feels as though waves are moving from behind my left ear across the back of my head and pulling on my right eye. This with spasms/or tics on the chin, right cheek.
The 4th of September feels so very far away. Still trying to stay positive.....
Somehow I managed to shrink my blogging screen? Have been told that I had to have done it via the built in mouse pad on the laptop.... bless her heart for tellin' me how to fix it, worked like a charm when all else failed.
Had a fairly decent day. Used the cane more than I cared to, but was most unsteady outdoors. Seems the numbness & pain settled into the arms, from shoulder to tips of fingers on both sides. Intermittent spasms in the legs, not painful but mostly annoying.
My eyes feel puffy, but look normal according to the hubs. Dry, irritated, as if I've been out in one of our spring dust storms. Eye drops give relief for about 5 minutes. Of course, could be because more have wound up down my face rather than in my eye. Not enough coordination to pull it off.
There's some abdominal spasms this evening, some quite sharp and they double me over. I hate this. Feels as though waves are moving from behind my left ear across the back of my head and pulling on my right eye. This with spasms/or tics on the chin, right cheek.
The 4th of September feels so very far away. Still trying to stay positive.....
Wednesday, August 29, 2012
The days continue to dawn
Any new developments? Not really. Fingers don't want to hit the correct keys on this thing, leg cramps are interesting to say the least. Palms are numb, the skin on my hands feel stretched to the point that "taunt" has a whole new meaning. The ligaments in my arms (upper & lower) feel the same. I might as well have been lifting hay out of the field, those lovely 85 pounders, and stacking them on the flat bed. They are that painful with that same "day after" throb... Speaking of hay, I'm probably about out. Have great hopes the hubs is looking into getting some. I do not ask. There's much guilt involved as it is. The financial strain on him quite strong.
I take a deep breath with caution, Someone needs to see about getting that boa constrictor more suitable housing. I am weak and have not given up smoking cigarettes. Have been trying to convince the hubs that I need the electronic ones, has fallen on deaf ears. Mom and the aunt have been taking care of me on the herbal smoke department, bless their hearts. I want for the strength to just walk away from them, as my mom did several years ago.
The top teeth in the front are still numb, the lower jaw as well. Facial tics abound. Have settled on this being my new "norm", although it seems the waves across the back of the head/neck come and go. No longer constant. Discomfort in the right eye. Reckon "it's" feeling the need to spread the wealth. The tip of the tongue still feels mostly asleep, some taste buds have returned. I can tell sweetness, but still mostly can only feel the textures of food. Am relying on memory to force myself to eat. There is no hunger, not even a pang.
The longer I attempt to write this, the more pain shoots through the hands. It feels like my fingernails want to removes themselves with every stroke of a key. Many mis-strikes are occurring - so much for years of typing. I try to correct errors, which is proving exhausting. The brain is trying to keep up.
A "dry sweat", no other way I know of to describe it, continues. Have had it for almost 3 weeks now. Any physical exhertion seems to bring it on and I can smell the ammonia emitting from my body. It disgusts me. I've not the energy to shower, struggle to do it once a day. Lotion doesn't make the skin feel any less tight. From the top of my head to the bottoms of my feet, every tiny millimeter of skin feels stretched to the max. I know that it's all plenty of room, I've no muscle left and the skin just hangs from my upper arms, butt & thighs.
I've a doctors appointment Sept. 4th. Gonna give my mom's surgeon a try. Why?? Well, the poor fella became quite ill about a year ago. Finally was found to have heavy metal poisoning, from a still unknown source. He knows 1st hand what unknown horrors ravished his body and the work to get himself well. I am in high hopes that he will be more gung-ho in tracking down what's happened to me. Either an answer or another specialist that can be seen. Someone made him well, I wish to be as well. Besides, I know he wishes me to be well again. Although the last time I accompanied mom on a visit I teased him it was only selfish reasoning on his part - he's addicted to a molasses & quinoa cookie I make, lol. Yes, he has 1st hand experience with being gluten free, sugar free, etc - all due to his illness. In addition to chelation therapy & a host of others. I can't currently think of whom better to discuss my malfunctions with, someone with a personal understanding.
The stars were sure pretty this mornin'. Wish I'd had the strength to take the camera out and do some snapping. Another thing one misses & takes for granted - the ability to do the simplest of things in life....
I take a deep breath with caution, Someone needs to see about getting that boa constrictor more suitable housing. I am weak and have not given up smoking cigarettes. Have been trying to convince the hubs that I need the electronic ones, has fallen on deaf ears. Mom and the aunt have been taking care of me on the herbal smoke department, bless their hearts. I want for the strength to just walk away from them, as my mom did several years ago.
The top teeth in the front are still numb, the lower jaw as well. Facial tics abound. Have settled on this being my new "norm", although it seems the waves across the back of the head/neck come and go. No longer constant. Discomfort in the right eye. Reckon "it's" feeling the need to spread the wealth. The tip of the tongue still feels mostly asleep, some taste buds have returned. I can tell sweetness, but still mostly can only feel the textures of food. Am relying on memory to force myself to eat. There is no hunger, not even a pang.
The longer I attempt to write this, the more pain shoots through the hands. It feels like my fingernails want to removes themselves with every stroke of a key. Many mis-strikes are occurring - so much for years of typing. I try to correct errors, which is proving exhausting. The brain is trying to keep up.
A "dry sweat", no other way I know of to describe it, continues. Have had it for almost 3 weeks now. Any physical exhertion seems to bring it on and I can smell the ammonia emitting from my body. It disgusts me. I've not the energy to shower, struggle to do it once a day. Lotion doesn't make the skin feel any less tight. From the top of my head to the bottoms of my feet, every tiny millimeter of skin feels stretched to the max. I know that it's all plenty of room, I've no muscle left and the skin just hangs from my upper arms, butt & thighs.
I've a doctors appointment Sept. 4th. Gonna give my mom's surgeon a try. Why?? Well, the poor fella became quite ill about a year ago. Finally was found to have heavy metal poisoning, from a still unknown source. He knows 1st hand what unknown horrors ravished his body and the work to get himself well. I am in high hopes that he will be more gung-ho in tracking down what's happened to me. Either an answer or another specialist that can be seen. Someone made him well, I wish to be as well. Besides, I know he wishes me to be well again. Although the last time I accompanied mom on a visit I teased him it was only selfish reasoning on his part - he's addicted to a molasses & quinoa cookie I make, lol. Yes, he has 1st hand experience with being gluten free, sugar free, etc - all due to his illness. In addition to chelation therapy & a host of others. I can't currently think of whom better to discuss my malfunctions with, someone with a personal understanding.
The stars were sure pretty this mornin'. Wish I'd had the strength to take the camera out and do some snapping. Another thing one misses & takes for granted - the ability to do the simplest of things in life....
Tuesday, August 28, 2012
A glimpse of light
Yes, I'm seeing it, that glimmer of sunshine trying to make it's way into what has been great darkness of mind, body and spirit. Thank the stars that I've a grand network of support from some very caring friends and family members. They have carried me through and encouraged me to this point.
How'd I get here, one might ask. I did research. Loads and loads of research. Printed most things out due to the muddled mind that did not want to comprehend. After failing to get my doc's attention (all the way back to March 2012, when the neuropathy had noticeably began) that I wanted and desperately needed a full blood work up to see if there vitamin/or mineral deficiencies, or perhaps a toxin overload, I felt compelled to help myself.
I've combed through the "lack of this can provide symptoms of this" for hours on end. I do not sleep. Awakened by spasms that continue to thwart this body. Drinking more almond milk (am lactose intolerant, to add to a myriad of food allergies) for the magnesium, vitamin E, A. Eating more nuts and leafy greens - must get those vitamins & minerals back in order.
"Leaky gut" syndrome is what some call it. Perhaps a good name, since the intestines seem to not be properly functioning. What causes that? In theory (I've found no 100% confirmation), it's the Celiac - damage to the villi (tiny, finger-like projections that enable the small intestine to absorb nutrients from food) . My presumption being that this has been out of whack, so to speak, since at least February. When the numbness in the bottoms of my feet caught my attention, my scalp dried out/loads of hair loss, and a porcupine decided my face was a great place to hang out.
I adore my current doc's. Trust me, I have gone through many the past 5yrs. Am a tad more than just disgruntled though that they did no further testing (my fault... they wanted to send me to the Mayo clinic, not possible with no health insurance...) and just told me it was uncurable, this peripheral neuropathy.
Perhaps my body and family members could've been spared this horror of my loss of control had they done the blood work. Perhaps I am just continuing to grasp at straws. The mind clarity has improved over the past 4 days. The mouth and teeth not so numb. Still spasms, predominately on the right side now, from my mouth to my eye. But even that is better. Pain still shoots through the hands, fingernails feel as if they will blow off with every touch of this keypad... but if I don't write it now, it might just be forgotten. Can't have that now, can we?
Here I will share some of the information I've combed through, in case you fee you might be aided by it.
http://cookitallergyfree.com/blog/2010/08/13-tips-on-how-to-heal-the-leaky-gut/
I’m Gluten Free and Still Sick? | The Celiac Diva
www.naturalnews.com/food_cravings.html
How'd I get here, one might ask. I did research. Loads and loads of research. Printed most things out due to the muddled mind that did not want to comprehend. After failing to get my doc's attention (all the way back to March 2012, when the neuropathy had noticeably began) that I wanted and desperately needed a full blood work up to see if there vitamin/or mineral deficiencies, or perhaps a toxin overload, I felt compelled to help myself.
I've combed through the "lack of this can provide symptoms of this" for hours on end. I do not sleep. Awakened by spasms that continue to thwart this body. Drinking more almond milk (am lactose intolerant, to add to a myriad of food allergies) for the magnesium, vitamin E, A. Eating more nuts and leafy greens - must get those vitamins & minerals back in order.
"Leaky gut" syndrome is what some call it. Perhaps a good name, since the intestines seem to not be properly functioning. What causes that? In theory (I've found no 100% confirmation), it's the Celiac - damage to the villi (tiny, finger-like projections that enable the small intestine to absorb nutrients from food) . My presumption being that this has been out of whack, so to speak, since at least February. When the numbness in the bottoms of my feet caught my attention, my scalp dried out/loads of hair loss, and a porcupine decided my face was a great place to hang out.
I adore my current doc's. Trust me, I have gone through many the past 5yrs. Am a tad more than just disgruntled though that they did no further testing (my fault... they wanted to send me to the Mayo clinic, not possible with no health insurance...) and just told me it was uncurable, this peripheral neuropathy.
Perhaps my body and family members could've been spared this horror of my loss of control had they done the blood work. Perhaps I am just continuing to grasp at straws. The mind clarity has improved over the past 4 days. The mouth and teeth not so numb. Still spasms, predominately on the right side now, from my mouth to my eye. But even that is better. Pain still shoots through the hands, fingernails feel as if they will blow off with every touch of this keypad... but if I don't write it now, it might just be forgotten. Can't have that now, can we?
Here I will share some of the information I've combed through, in case you fee you might be aided by it.
http://cookitallergyfree.com/blog/2010/08/13-tips-on-how-to-heal-the-leaky-gut/
I’m Gluten Free and Still Sick? | The Celiac Diva
www.naturalnews.com/food_cravings.html
Monday, August 27, 2012
Toxic Love?
The masses of information that I've found in regards to peripheral neuropathy have been mind-boggling and overwhelming. I am not normally overwhelmed, but this "thing" that is ravaging my body has put me in a different place.
We've not had health insurance in years. I tired of them raising the premiums every 6 months by at least $100 per month on a policy that was never used. When it reached $600 per month (just for me and the hubs) about 10 yrs ago, I said enough is enough. We are healthy, active folks. Hubs agreed, he's always had a bad taste in his mouth in regards to any type of insurance. He has strange quirks....
When I first became ill with the celiac and crohn's (no tests to conclude either one, but the strategy seemed to "fix" the problems), he decided we still didn't require insurance. He was perfectly capable of paying whatever health related bills that surmounted.... I have been waiting almost 5yrs for him to change his mind.
This morning after a most painful nite of mostly unrest, I made the call to him at work. I'm not a demanding person. I have been told that I'm "low maintenance". Don't want or pine for diamonds, fancy clothing, furnishings or trucks. My house is literally falling apart. My fences are, the barns - corrals are held together with baling twine and wire... and a prayer.
I told him this morning that he WILL get insurance through his work. Now. We shall see if he follows through or lets this "slide" as well. I cannot get well if I don't know what all the culprits are. There's a need for a minimum of a battery of blood tests that will exceed $2,000. Pancreatic enzymes to be tested, magnesium levels, calcium, etc. "Leaky gut" syndrome to be addressed. A scope would be nice to see what damage there may be to the intestines so a better plan to help them heal can be procured.
Is my body overrun with candida? Environmental toxins? There are times a gal just needs answers instead of relying on hope & faith that things will get better. I am living proof that these things do not fix themselves. I can take educated guesses where things are missing, but it's extremely dangerous if one is wrong when it comes to supplementation. My entire body is out of whack.
MRI's, CT scans, EMG - whatever is deemed most appropriate to see what nerves are being affected with this neuropathy. Some knowledge of if they are gone beyond repair, or if there's a chance at getting the life I once knew back.
I am tired. I hurt. I cannot continue to just "cowboy up" and fake my way through recovery...
Is the hubs my toxic love? Or am I perhaps over reacting? I cannot imagine watching someone I profess to love so deeply to suffer through so much, and then go play another round of golf....
We've not had health insurance in years. I tired of them raising the premiums every 6 months by at least $100 per month on a policy that was never used. When it reached $600 per month (just for me and the hubs) about 10 yrs ago, I said enough is enough. We are healthy, active folks. Hubs agreed, he's always had a bad taste in his mouth in regards to any type of insurance. He has strange quirks....
When I first became ill with the celiac and crohn's (no tests to conclude either one, but the strategy seemed to "fix" the problems), he decided we still didn't require insurance. He was perfectly capable of paying whatever health related bills that surmounted.... I have been waiting almost 5yrs for him to change his mind.
This morning after a most painful nite of mostly unrest, I made the call to him at work. I'm not a demanding person. I have been told that I'm "low maintenance". Don't want or pine for diamonds, fancy clothing, furnishings or trucks. My house is literally falling apart. My fences are, the barns - corrals are held together with baling twine and wire... and a prayer.
I told him this morning that he WILL get insurance through his work. Now. We shall see if he follows through or lets this "slide" as well. I cannot get well if I don't know what all the culprits are. There's a need for a minimum of a battery of blood tests that will exceed $2,000. Pancreatic enzymes to be tested, magnesium levels, calcium, etc. "Leaky gut" syndrome to be addressed. A scope would be nice to see what damage there may be to the intestines so a better plan to help them heal can be procured.
Is my body overrun with candida? Environmental toxins? There are times a gal just needs answers instead of relying on hope & faith that things will get better. I am living proof that these things do not fix themselves. I can take educated guesses where things are missing, but it's extremely dangerous if one is wrong when it comes to supplementation. My entire body is out of whack.
MRI's, CT scans, EMG - whatever is deemed most appropriate to see what nerves are being affected with this neuropathy. Some knowledge of if they are gone beyond repair, or if there's a chance at getting the life I once knew back.
I am tired. I hurt. I cannot continue to just "cowboy up" and fake my way through recovery...
Is the hubs my toxic love? Or am I perhaps over reacting? I cannot imagine watching someone I profess to love so deeply to suffer through so much, and then go play another round of golf....
Peripheral Neuropathy...
What a word, right? If you've been around anyone with diabetes, you associate it with the numbness they complain of in their feet. I am learning that is only the tip of the iceberg in a most unfriendly and up close way.
I spent my Sunday with the new beginnings of pain. Researching the aforementioned disease with some difficulty to the task, I am both saddened and developing a new fear.
While my staggering gait seemed to improve somewhat, the rest of me is falling apart quicker than I could have ever imagined. Sharp tingles of pain surge throughout my hands, fingers, legs and feet. I am awakened this morning at 1:23am. My vision is clear, yet I can feel waves of spasms scouring through my head.
Each touch of fabric hurts my skin. The sheets, the mattress, my clothing. I've the urge to just strip naked in an attempt to alleviate it! Fingers and toes all feel as though they could very well explode at any moment. My knees scream in complete defiance. Calve muscles have joined the thighs in waves of spasms as well. Not much pain in them, unless attempting to walk.
I've yet to figure it out. I've combed through the information on the internet - the possibilities seem endless as to what could be the true culprit. I need tests. My initial thought was, "why bother, there's no cure". My way of thinking is swiftly changing to "must have tests to see how much of this is to be permanent, where the culprit is that initiated this malady".
Having joined a support group, I have not found the comfort in numbers as of yet. I am even more frightened by the thing that continues to wreak havoc on my body. The fine folks of the group are praying for me, as well as many others. I don't think the power of prayer will solve this. If it did, why are there so many suffering from various degrees of it?
Smoking is not good for it, perhaps the reason for it's quick as wildfire spread? While puny with the crash'n burn from the gut, the smell and taste of cigarettes nauseated me, I might have smoked 3 or 4 per day. After that passed, I've already escalated back up to my pack per day. Nicotine apparently is a blood vessel constrictor, not a good thing with neuropathies.
The other culprit could be the sodas I consume. This too wasn't a problem while ill with the gut. One sip and I'd get sick to my stomach. Being back up to 3 or 4 a day the past week could be aggrevating it.
Geesh, really? First no gluten (celiac).... then low fat (crohn's) and now no smoking or sodas (refined sugars at all if one wants to get technical)? Is it possible to completely redefine ones eating, drinking and smoking habits in such a short period of time? I am in dismay at the moment. Feeling great self pity at the things I shouldn't consume into my body.
What a horrid monkey my being has become!
I spent my Sunday with the new beginnings of pain. Researching the aforementioned disease with some difficulty to the task, I am both saddened and developing a new fear.
While my staggering gait seemed to improve somewhat, the rest of me is falling apart quicker than I could have ever imagined. Sharp tingles of pain surge throughout my hands, fingers, legs and feet. I am awakened this morning at 1:23am. My vision is clear, yet I can feel waves of spasms scouring through my head.
Each touch of fabric hurts my skin. The sheets, the mattress, my clothing. I've the urge to just strip naked in an attempt to alleviate it! Fingers and toes all feel as though they could very well explode at any moment. My knees scream in complete defiance. Calve muscles have joined the thighs in waves of spasms as well. Not much pain in them, unless attempting to walk.
I've yet to figure it out. I've combed through the information on the internet - the possibilities seem endless as to what could be the true culprit. I need tests. My initial thought was, "why bother, there's no cure". My way of thinking is swiftly changing to "must have tests to see how much of this is to be permanent, where the culprit is that initiated this malady".
Having joined a support group, I have not found the comfort in numbers as of yet. I am even more frightened by the thing that continues to wreak havoc on my body. The fine folks of the group are praying for me, as well as many others. I don't think the power of prayer will solve this. If it did, why are there so many suffering from various degrees of it?
Smoking is not good for it, perhaps the reason for it's quick as wildfire spread? While puny with the crash'n burn from the gut, the smell and taste of cigarettes nauseated me, I might have smoked 3 or 4 per day. After that passed, I've already escalated back up to my pack per day. Nicotine apparently is a blood vessel constrictor, not a good thing with neuropathies.
The other culprit could be the sodas I consume. This too wasn't a problem while ill with the gut. One sip and I'd get sick to my stomach. Being back up to 3 or 4 a day the past week could be aggrevating it.
Geesh, really? First no gluten (celiac).... then low fat (crohn's) and now no smoking or sodas (refined sugars at all if one wants to get technical)? Is it possible to completely redefine ones eating, drinking and smoking habits in such a short period of time? I am in dismay at the moment. Feeling great self pity at the things I shouldn't consume into my body.
What a horrid monkey my being has become!
Saturday, August 25, 2012
August 25, 2012 - a journal to keep perhaps?
I know, have been told to keep one. Never wanted to spend the time, didn't feel it was worth it. With this latest bout of "we don't know", but sent me home with cipro, prednisone & a new script for the numbness and tics that have surfaced since February.
The 1st two have eased the gut. No more diarrhea, the pain is gone. The numbness has only grown in magnitude. It started out innocent enough. Mostly went unnoticed, in fact. Paid no mind til I'd towel off after showering. Numb on the bottom of my left foot, at the ball. Which progressed to involve the big toe, then the next 3. Not content with that, it spread to the right foot. It was annoying. Akin to having your sock fall down & ball up under your foot and there's not a thing that can be done except right that darned sock... but I'm not wearing socks...
Peripheral Neuropathy, said my head doc. Appears it's becoming a common phenomenon amongst folks with Celiac disease. I'm lucky, he tells me. He's another patient that has uncontrollable had shaking... ok, he's got a point. Wadded up sock feet is a far cry and way less debilitating than that! Poor woman. He sent her to the Mayo Clinic in Arizona, just to find there's no cure for it. There are meds to help alleviate the symptoms...which is what I've now been prescribed.
On the 1st day after this latest doc's visit (which had a whole lot of "i sure wish you had insurance so we could send you to the Mayo Clinic"), it was just the normal worn out tired. Typically by the 3rd day of the steroids, I'm the energizer bunny. I have to be busy. Constantly. I scrub my house from floor to ceiling. Over and over, like I've developed a cleaning disorder. It drives the hubs crazy. He catches me in the kitchen floor with a toothbrush scrubbing the floor as quietly as possible in the wee hours of the morn. I cannot sleep. It's horrible, but at the same time extremely productive.
Day 3 of treatment and the gut pain has ebbed. The numbness that resided in the hands/feet and affected walking with no cooperation from the left leg (dead from the hip down) has traveled. Neither leg wants to work. I spent alot of time crawling about, using the pups (almost 2yr old bird dogs) as leverage to regain footing. It felt as though my torso was on backwards. Awkward, jerky steps at best. Knees buckling. Not a pretty sight, I'm certain. The boa constrictor that moved into my lower back at the onset of this crash 'n burn had decided to expand it's grasp. Pressure increased up to about the 3rd from the bottom rib, encompassing all around, not just playing favorites with the back.
Day 5 brought complete relief from the gut pain, diarrhea gone. Only one problem, the numbness now has migrated along into my chest. Breathing feels odd, light-headedness abounds. Did I forget to mention that I told the doc my tongue was numb? Or that my teeth were numb and felt great pressure? My healthcare practitioner frowned with that news...
By day 6, speech is slurred, walking with a cane. Body numb up to the bottom of my jaw. Lil "tics" happening - the feeling of a spasm, followed by the feeling if drooping. Am I having a stroke? I rush to a mirror as quickly as possible. No, no drooping. What the heck?
Day 7, no energy what so ever. Great effort to peel myself out of bed. Sheer and complete exhaustion accompanied by complete body numbness, muscle spasms. Brain fog, slurred speech, massive dysfunction with all movements. I slithered onto the porch. Trying to find solace in the peacefulness of my back yard. It was not there, despite the flittering of birds and bugs, the soft sounds from the water fall, trees gently swaying in the wind. I was not comforted.
Figured a shower might perk my up a bit. Took over an hour to do. Had to turn the water off & sit in the alcove of the garden tub. This just can't be happening, that's the thought that was running through my muddled brain. I finally emerged, much to the delight of the awaiting pups, cat and hubs. I believe I"m worrying him to an early grave. The helplessness of it all is such a strain on those that surround you.
Day 8, I succumb to the doc's demand that I start the new med - gabapentin. Lowest dose possible, 1 100 mg pill in the evening, increasing til I'm taking 3 per day. Then, if I'm still not better, they will run tests to see where my vitamin & mineral counts sit. Really?? Yes, this is their logic. I take the pill. I've now been on them for 3 days. The numbness is still there. I have spasms throughout my entire body. The most annoying involving my face. I snarl uncontrollably. Having spasms behind my eyes, around my head (which is weird, it's almost like a caress?) I can walk better. Just jerky movements akin to a praying mantis... The speech has cleared, although I still find myself "seeing" the words, yet unable to speak them.
The hands have gone from numbness to somewhat painful. Like lil porcupine quills protruding through the skin. It's like when you've spent way too much time in the water & have "prune fingers, except that it's up the arms as well. Any touch on any body part emits pain signals to my confused brain. I am most unhappy with this latest development.
My joints, ligaments, muscles are all screaming in protest against the dullness. I think I liked the complete numbness much better than this. But, perhaps this is an improvement, the fact that I can feel at all. I've not driven in over 3 weeks. Didn't trust the reflexes enough to endanger others. Has been a most confining experience. No horses to play with, I cannot make it to the pasture to play with them, even if I had the strength. They call to me softly, almost a quiet understanding that I am once again not well.
I miss my life. It's a struggle to see the beauty in all that surrounds. I know it's there, I see it, smell it, feel it. The sadness is it no longer brings me the joy. I snap pictures to capture the flowers in bloom, in hopes of them triggering the memory down the road. I have become most pitiful, I fear.
The 1st two have eased the gut. No more diarrhea, the pain is gone. The numbness has only grown in magnitude. It started out innocent enough. Mostly went unnoticed, in fact. Paid no mind til I'd towel off after showering. Numb on the bottom of my left foot, at the ball. Which progressed to involve the big toe, then the next 3. Not content with that, it spread to the right foot. It was annoying. Akin to having your sock fall down & ball up under your foot and there's not a thing that can be done except right that darned sock... but I'm not wearing socks...
Peripheral Neuropathy, said my head doc. Appears it's becoming a common phenomenon amongst folks with Celiac disease. I'm lucky, he tells me. He's another patient that has uncontrollable had shaking... ok, he's got a point. Wadded up sock feet is a far cry and way less debilitating than that! Poor woman. He sent her to the Mayo Clinic in Arizona, just to find there's no cure for it. There are meds to help alleviate the symptoms...which is what I've now been prescribed.
On the 1st day after this latest doc's visit (which had a whole lot of "i sure wish you had insurance so we could send you to the Mayo Clinic"), it was just the normal worn out tired. Typically by the 3rd day of the steroids, I'm the energizer bunny. I have to be busy. Constantly. I scrub my house from floor to ceiling. Over and over, like I've developed a cleaning disorder. It drives the hubs crazy. He catches me in the kitchen floor with a toothbrush scrubbing the floor as quietly as possible in the wee hours of the morn. I cannot sleep. It's horrible, but at the same time extremely productive.
Day 3 of treatment and the gut pain has ebbed. The numbness that resided in the hands/feet and affected walking with no cooperation from the left leg (dead from the hip down) has traveled. Neither leg wants to work. I spent alot of time crawling about, using the pups (almost 2yr old bird dogs) as leverage to regain footing. It felt as though my torso was on backwards. Awkward, jerky steps at best. Knees buckling. Not a pretty sight, I'm certain. The boa constrictor that moved into my lower back at the onset of this crash 'n burn had decided to expand it's grasp. Pressure increased up to about the 3rd from the bottom rib, encompassing all around, not just playing favorites with the back.
Day 5 brought complete relief from the gut pain, diarrhea gone. Only one problem, the numbness now has migrated along into my chest. Breathing feels odd, light-headedness abounds. Did I forget to mention that I told the doc my tongue was numb? Or that my teeth were numb and felt great pressure? My healthcare practitioner frowned with that news...
By day 6, speech is slurred, walking with a cane. Body numb up to the bottom of my jaw. Lil "tics" happening - the feeling of a spasm, followed by the feeling if drooping. Am I having a stroke? I rush to a mirror as quickly as possible. No, no drooping. What the heck?
Day 7, no energy what so ever. Great effort to peel myself out of bed. Sheer and complete exhaustion accompanied by complete body numbness, muscle spasms. Brain fog, slurred speech, massive dysfunction with all movements. I slithered onto the porch. Trying to find solace in the peacefulness of my back yard. It was not there, despite the flittering of birds and bugs, the soft sounds from the water fall, trees gently swaying in the wind. I was not comforted.
Figured a shower might perk my up a bit. Took over an hour to do. Had to turn the water off & sit in the alcove of the garden tub. This just can't be happening, that's the thought that was running through my muddled brain. I finally emerged, much to the delight of the awaiting pups, cat and hubs. I believe I"m worrying him to an early grave. The helplessness of it all is such a strain on those that surround you.
Day 8, I succumb to the doc's demand that I start the new med - gabapentin. Lowest dose possible, 1 100 mg pill in the evening, increasing til I'm taking 3 per day. Then, if I'm still not better, they will run tests to see where my vitamin & mineral counts sit. Really?? Yes, this is their logic. I take the pill. I've now been on them for 3 days. The numbness is still there. I have spasms throughout my entire body. The most annoying involving my face. I snarl uncontrollably. Having spasms behind my eyes, around my head (which is weird, it's almost like a caress?) I can walk better. Just jerky movements akin to a praying mantis... The speech has cleared, although I still find myself "seeing" the words, yet unable to speak them.
The hands have gone from numbness to somewhat painful. Like lil porcupine quills protruding through the skin. It's like when you've spent way too much time in the water & have "prune fingers, except that it's up the arms as well. Any touch on any body part emits pain signals to my confused brain. I am most unhappy with this latest development.
My joints, ligaments, muscles are all screaming in protest against the dullness. I think I liked the complete numbness much better than this. But, perhaps this is an improvement, the fact that I can feel at all. I've not driven in over 3 weeks. Didn't trust the reflexes enough to endanger others. Has been a most confining experience. No horses to play with, I cannot make it to the pasture to play with them, even if I had the strength. They call to me softly, almost a quiet understanding that I am once again not well.
I miss my life. It's a struggle to see the beauty in all that surrounds. I know it's there, I see it, smell it, feel it. The sadness is it no longer brings me the joy. I snap pictures to capture the flowers in bloom, in hopes of them triggering the memory down the road. I have become most pitiful, I fear.
An introduction to my "journey through the fog"
I've muddled over how to begin. If you are a sufferer of Celiac or Crohn's, or lucky enough to have both like myself, you're already aware of the years gone undiagnosed and then toll it's taken on not only your physical, but your emotional well being, too.
The tremendous guilt that your parents have that they didn't "take better care of you" when you were younger. Didn't push the doctors to find out what was truly wrong with you. Then, once adulthood hit, it was on our shoulders. We ponder the "why wasn't I more insistent with my healthcare professionals throughout the years that there was somethin' wrong & they needed to find it?" Simple logic, actually. The symptoms come and go. Some actually fell in sync with flu bugs, stomach viruses goin' about the community.
I can guarantee you that almost every time I experienced an episode, at least 10 people that I knew had some kinda bug....
No disease is fun. I"ve great empathy and compassion for all who suffer. It just doesn't seem fair, or right, or just. But, these things apparently can't be helped for the most part. I will tell you from my own personal experience and the past 4 years (will be 5 in May 2013) of trying to get well, stay well, this one thing: neither one are for sissy's.
My first thought upon diagnosis was "well, that's simple enough. No gluten, low fat. How hard could that possibly be?" Well, it's been a journey filled with many hiccups, large ruts have loomed. A family has had to endure alot of "retraining" and there's a selfishness involving the fridge. I have my "own" butter. Yes, it has my name on it - all others are forbidden from using it. I have been unintentionally cross-contaminated by a spoon used to stir "real mac & cheese, gluten laden pasta" snitchin' butter. To some a minute amount, to my system, catastrophy. Apparently I'm one of those who've been blessed with a super-hyper sensitivity to the teeniest amount of gluten. Puts the doc's in shock & awe mode...
When your family insists on partaking in ingesting products with gluten, cross-contamination is a loomin' fear that nags on you, keeps you up at nights. We have "squeeze" everything (ketchup, mayo, etc) - but the thought always sticks with me "what if they accidently touched the bread/or gluten loaded object with the tip? did they wipe the excess with their finger that's touched the evil thing?" I've grown to be extremely paranoid. My poor grand youngun's have learned well, bless there hearts. It's sad and yet reassuring that the youngest in particular (perhaps because of his lactose intolerance since birth, a family thing we've apparently passed down several generations - starting, to my knowledge, with my maternal grandmother), is most cautious. He will come & tell me upon his arrival, "I can't kiss you, I've had gluten" and then give me a big hug. That boy is truly priceless.
And thus, the "Journey through the fog" continues....
The tremendous guilt that your parents have that they didn't "take better care of you" when you were younger. Didn't push the doctors to find out what was truly wrong with you. Then, once adulthood hit, it was on our shoulders. We ponder the "why wasn't I more insistent with my healthcare professionals throughout the years that there was somethin' wrong & they needed to find it?" Simple logic, actually. The symptoms come and go. Some actually fell in sync with flu bugs, stomach viruses goin' about the community.
I can guarantee you that almost every time I experienced an episode, at least 10 people that I knew had some kinda bug....
No disease is fun. I"ve great empathy and compassion for all who suffer. It just doesn't seem fair, or right, or just. But, these things apparently can't be helped for the most part. I will tell you from my own personal experience and the past 4 years (will be 5 in May 2013) of trying to get well, stay well, this one thing: neither one are for sissy's.
My first thought upon diagnosis was "well, that's simple enough. No gluten, low fat. How hard could that possibly be?" Well, it's been a journey filled with many hiccups, large ruts have loomed. A family has had to endure alot of "retraining" and there's a selfishness involving the fridge. I have my "own" butter. Yes, it has my name on it - all others are forbidden from using it. I have been unintentionally cross-contaminated by a spoon used to stir "real mac & cheese, gluten laden pasta" snitchin' butter. To some a minute amount, to my system, catastrophy. Apparently I'm one of those who've been blessed with a super-hyper sensitivity to the teeniest amount of gluten. Puts the doc's in shock & awe mode...
When your family insists on partaking in ingesting products with gluten, cross-contamination is a loomin' fear that nags on you, keeps you up at nights. We have "squeeze" everything (ketchup, mayo, etc) - but the thought always sticks with me "what if they accidently touched the bread/or gluten loaded object with the tip? did they wipe the excess with their finger that's touched the evil thing?" I've grown to be extremely paranoid. My poor grand youngun's have learned well, bless there hearts. It's sad and yet reassuring that the youngest in particular (perhaps because of his lactose intolerance since birth, a family thing we've apparently passed down several generations - starting, to my knowledge, with my maternal grandmother), is most cautious. He will come & tell me upon his arrival, "I can't kiss you, I've had gluten" and then give me a big hug. That boy is truly priceless.
And thus, the "Journey through the fog" continues....
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