The pain with typing became unbearable, so I had to stop writing this for a bit. Things aren't back to "normal", and I wonder if they ever will be..
I've an appointment at Scott & White in Temple, Tx coming up and have great hopes they've a clue to this body of mine and it's many facets of dysfunction.
Numerous cold fronts and swift barometric pressure changes have been the cause of much discomfort, pain, slurred speech the past month. It seems as I start to recover from one, another is on it's way. Typically about 6hrs prior to it actually "hitting" us, the pain, tremors and loss of motor skills hits. Not looking forward to winter this year.
I appreciate all the well wishes and prayers. They keep me motivated to go forward. Once "it" is found out, a better plan can be developed to get me back up and running the best of my ability.
Monday, October 29, 2012
Friday, September 21, 2012
Painful to type...
Sorry for my leaving some of you hanging. It's most painful to type and use the mouse. Insurance was denied, as predicted. Have filed an application for the "high risk pool" and have grand hopes of getting approved effective October 1st.
Then comes getting my original doc to make me an appointment with the Mayo Clinic in Arizona. I could request one for myself, but I've been told that one can get in quicker if a doc requests one. Fingers crossed....
I spent last Friday nite in the emergency room....for almost 8hours. They said, after many labs, xrays, 2 CT scans, that I have "some sort of neuropathy". Gave me another prescription for gabapentin an told me to follow-up with a neurologist. Whom I called on Monday, they won't see me without me coughing up $2,000 up front. (since I've no insurance). So we wait.
The pain and stabbing in the hands has become constant. Harder and harder to grasp objects (even the cane, which I find I need more than not lately), keep hold of things once I do get them. The legs are still numb, hip to toes. They tire easily, I cannot make it from the house to the truck without the end result being complete exhaustion. I really and truly dislike this place I'm living in.
I contacted our health food store last Saturday morning, sent the hubs after a buffet of "herbal remedies". IntestiNew, NerveFix, Cayenne, probiotics, DGL. The 1st has l-glutamine - which is purported to heal the gut and aid in absorption of nutrients. The only thing I can say has improved at all is my stomach - I no longer look 5 months pregnant. I reckon that's something, right?
Up until yesterday, sleeping seemed to be the only relief I could obtain. Last nite, the pain in my hands/arm/legs/feet kept waking me... all night long. I'm hoping this is is not a prelude of more painful nights. I may have to bite the bullet and start the gabapentin....have the hubs hide all firearms. Something has to give, I'm so tired.
Then comes getting my original doc to make me an appointment with the Mayo Clinic in Arizona. I could request one for myself, but I've been told that one can get in quicker if a doc requests one. Fingers crossed....
I spent last Friday nite in the emergency room....for almost 8hours. They said, after many labs, xrays, 2 CT scans, that I have "some sort of neuropathy". Gave me another prescription for gabapentin an told me to follow-up with a neurologist. Whom I called on Monday, they won't see me without me coughing up $2,000 up front. (since I've no insurance). So we wait.
The pain and stabbing in the hands has become constant. Harder and harder to grasp objects (even the cane, which I find I need more than not lately), keep hold of things once I do get them. The legs are still numb, hip to toes. They tire easily, I cannot make it from the house to the truck without the end result being complete exhaustion. I really and truly dislike this place I'm living in.
I contacted our health food store last Saturday morning, sent the hubs after a buffet of "herbal remedies". IntestiNew, NerveFix, Cayenne, probiotics, DGL. The 1st has l-glutamine - which is purported to heal the gut and aid in absorption of nutrients. The only thing I can say has improved at all is my stomach - I no longer look 5 months pregnant. I reckon that's something, right?
Up until yesterday, sleeping seemed to be the only relief I could obtain. Last nite, the pain in my hands/arm/legs/feet kept waking me... all night long. I'm hoping this is is not a prelude of more painful nights. I may have to bite the bullet and start the gabapentin....have the hubs hide all firearms. Something has to give, I'm so tired.
Friday, September 14, 2012
Just when one thinks they are getting better...
I feel like the life is being sucked out of me. The numb, tingling, burning is mid thigh downwards. The ache in my elbows almost wants to make me cry. Never mind the 40lb weight that is sitting on my lower back...or the pain in the left lung area (backside). Or the hands that don't want to work, very limited feeling in them - mostly pain and burning. Which now lives from the tips of the fingers up about an inch about my elbows.
The struggle to keep moving at times seems too much. I just want to lie down in a cool meadow and go to sleep ~ for an eternity. I keep pushing myself. Taking hot/cold showers trying to coax the blood to circulate throughout my body. The underneath of my tongue is a horrid shade of deep purple.
Still no word from the insurance company....
I feel as though I may be losing this battle with whatever has been ravaging my body. I am not afraid. Did I mention that my lips/tongue and teeth are all back to where they were a week ago? Yes, numb, the feeling of massive swelling and I'm just so darned tired.
Wednesday, September 12, 2012
Did I overdo?
This is the question that I'm asking myself this morning. I felt so much better yesterday that I decided to do some much needed house cleaning. I admit to being a bit compulsive about it and the past 5 weeks have left the place pretty darned dirty. Didn't help that I somehow broke all 3 vac's in the house....hubs bought me a new one, so I took it for a spin.
A corner of the living room seemed as good as place as any to get started. I "walked" out the big recliner to the middle of the floor and got started on the floor to ceiling clean. Living in the country means lots of dust. Two bird dogs in the house means lots of dog hair and dander. It's amazing how it creeps to every nook and cranny. I ran the vac's wand up high, capturing those darned cobwebs that have formed, got the walls, washed all objects on the wall and the table that resides there.
Had to get on my knees to clean along the baseboards and that little edge along side. Lemon oiled the woodwork. Then had a most difficult time getting off the floor. The pups watched intently close by. Took a good 30 minutes to get the recliner back in it's nook. I'm so glad I've a small house, because that wore me out!
I'd stripped the bed, washing all the linens, earlier in the day. Seemed an eternity putting it all back in order. But, I was pleased to have accomplished these meager tasks prior to the hubs returning from work. Although, my legs, in particular the thighs, burned as if I'd been running an incline for an hour. Oh, this muscle weakness truly sucks.. I experience it after every Celiac/or Crohn's crash'n burn.
It seems I always lose muscle mass during an "episode", as the doc likes to call them. Perhaps because of the intensity. Whatever the reason, I've always been up to the challenge and start to rebuild them as soon as possible. Up to this year, I was still able to haul my own hay out of the fields. Shocking to all, but I've always been in very good physical shape. Felt it necessary to work with horses and tend their needs. Now, I can't even get all 8 horses fed. The 5lbs each of hay feels to weigh 30 by the time I get to the 3rd one. This chore, along with hay procurement, has been handed over to the hubs for sometime now...
Anyways, I awakened this morning exhausted, congested, legs/feet/hands and arms from elbow to tips of fingers on fire and cramping. Change in the weather? Relapse from my strenuous day prior? I've not a clue, but find it somewhat depressing. On a positive note, so far I can still walk without the assistance of the cane. On the negative, I have been seriously thinking of getting one of those programs where one can just speak the words to the puter and it does all the typing. Why? Because it's a most painful task.
A corner of the living room seemed as good as place as any to get started. I "walked" out the big recliner to the middle of the floor and got started on the floor to ceiling clean. Living in the country means lots of dust. Two bird dogs in the house means lots of dog hair and dander. It's amazing how it creeps to every nook and cranny. I ran the vac's wand up high, capturing those darned cobwebs that have formed, got the walls, washed all objects on the wall and the table that resides there.
Had to get on my knees to clean along the baseboards and that little edge along side. Lemon oiled the woodwork. Then had a most difficult time getting off the floor. The pups watched intently close by. Took a good 30 minutes to get the recliner back in it's nook. I'm so glad I've a small house, because that wore me out!
I'd stripped the bed, washing all the linens, earlier in the day. Seemed an eternity putting it all back in order. But, I was pleased to have accomplished these meager tasks prior to the hubs returning from work. Although, my legs, in particular the thighs, burned as if I'd been running an incline for an hour. Oh, this muscle weakness truly sucks.. I experience it after every Celiac/or Crohn's crash'n burn.
It seems I always lose muscle mass during an "episode", as the doc likes to call them. Perhaps because of the intensity. Whatever the reason, I've always been up to the challenge and start to rebuild them as soon as possible. Up to this year, I was still able to haul my own hay out of the fields. Shocking to all, but I've always been in very good physical shape. Felt it necessary to work with horses and tend their needs. Now, I can't even get all 8 horses fed. The 5lbs each of hay feels to weigh 30 by the time I get to the 3rd one. This chore, along with hay procurement, has been handed over to the hubs for sometime now...
Anyways, I awakened this morning exhausted, congested, legs/feet/hands and arms from elbow to tips of fingers on fire and cramping. Change in the weather? Relapse from my strenuous day prior? I've not a clue, but find it somewhat depressing. On a positive note, so far I can still walk without the assistance of the cane. On the negative, I have been seriously thinking of getting one of those programs where one can just speak the words to the puter and it does all the typing. Why? Because it's a most painful task.
Tuesday, September 11, 2012
Improvements - more glimmer of hope!
Things are looking up finally. Day 2 with no cane. Gait is much better. No drunken slurs at all yesterday, awoke clear headed today. Can't wait to walk into my doc's appointment tomorrow afternoon without assistance of the hubs nor a cane!
Am I well? Not exactly. Still have the numbness in the arms/hands/torso/abdomen/legs & feet. Tingling prickles in the hands and lower arms. . Only slightly in the feet. I can take a deep breath, although a tad painful, am joyous that it can be done. The mind seem to be clear as well and that's certainly a good thing.
The facial tics and spasms are no longer constant, but sporadic at best. Lips, about a fourth of my tongue and front jaw line still numb but vastly improved from a week ago. My teeth no longer feel as though something is wedged between each and every one. Still have no appetite but have no nausea as long as I stick to small portions. The intestines seem to be waking from their sluggish existence.
My scalp is no longer intensely dry (and yes, I have been soaking my head in olive oil or coconut oil at least an hour prior to washing) that it hurts. Hair is still falling out, but not at the rate I feel the need to go hunting wigs online.
I still have to concentrate on walking, the lower back pain and numbness in the legs still pose a challenge. Sure not going to complain about a slow gait coz I sure disliked the jerky mess with uncontrollable legs that I've been. The family is most happy with my gait and speech.
Do I have high hopes of finding a diagnosis, prognosis tomorrow at the doc's? No, I will not be disillusioned as I already have an idea of the answers that lie in wait. The lab results will reveal a mess, I'm certain, but no real answers. My labs are typically horrid during and shortly after one of my crash'n burns - with the troubles I've had with this one, there's no telling what all will be awry. It's either my kidneys or liver that is off the charts, only to return back to normal within a week or two.
We shall see what the 'morrow brings. Hopefully I'll be even more improved by appointment time.
Monday, September 10, 2012
Greeting yet another day on the High Plains of New Mexico
I head off to the living room, seeking sanctuary in my recliner, ice packs in tow. In hopes of some relief from this now all too familiar scenario.
This is the skyline at the crack of dawn...
The moon is still visible, with this dawning of a new day. Entwined among the clouds, which all weather stations state there's no rain to be found.
A few stars remained quit vivid, although I failed to capture them. Hands too shaky, arms too weak, legs started to buckle...
I cannot see the sun, but know she's comin' up upon the horizon. One of the many wonders is the sunrises & sunsets that create a canvas of mass beauty, in a palette carefully selected by Mother Nature, to dot our High Plains skies.
Dawn has come. As she does so, we start to lose the yellow hues, the pink edges the darkness of the clouds.
I never was much of a mornin' person. Have massive quantities of pictures of our gorgeous sunsets, storm filled skies abound my vast collection. Look at all I've missed through the years!
I did more research on the possible causes of my body's latest malfunction Typing is most difficult, and I find myself constantly correcting words. The fingers feel as though they might just explode from the weight of the keys beneath my fingertips. I feel as though my lips have grown, although a quick check in the mirror suggests otherwise.
The facial spasms have lessened since my early rise, the back spasms as well. A snake like constriction remains in my torso. I am most unsettled. Waves of "motion" seem to be running through my body like waves gently lapping the shores edges. The feeling is of being on a boat, with one's eyes closed, waves ever so lightly tilting it to and fro.
Having been told so many possibilities for my "illness" - peripheral neuropthy, lupus, multiple sclerosis, thyroid malfunction, food allergies, diabetes, just to name a few - I found something that seems more to suit my symptoms - Guillian Barre's syndrome.
Here's a link, in case you think I've gone over the edge: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001704/
Saturday, September 8, 2012
Irritability and emotions on the run
Yes, I am irritable. I'm mad as hell at this body that won't cooperate throughout a day. I've tired of the hubs and his demeanin' ways. I've tired of the sad looks that come my way. I'm just plain tired... and irritable...and over emotional.
I do not cry. It's a built in safety mechanism. Only those who I'm certain will not see it as a sign of weakness, demean me for doing it, or shove it in my face later are allowed to witness it. It's just that precious to me. I am human. I hurt, feel losses, pain like the rest. Have become conditioned throughout my life to internalize it. And I have been succeeding quite well, til I became ill.
I'm sick and tired of trying to explain, feeling guilty and rehashing over and over why I might be "fine" one moment, then not the next. Having been told (alot and usually in a not so nice tone...)over the past year things such as "I talk to one person over the phone in the morning and come home to someone else". I would love to look him in the eye and say something akin to "gee, I just do to piss you off and am so pleased it's working". I have no idea why the mood swings, dry sweats, extreme irritability - to go along with the "newer" symptoms of late.
Slamming of things in the kitchen, a thing that is NOT normal for me, brings the hubs into the kitchen, his brown eyes that familiar "I'm pissed and superior" green glaring at me, yelling... What??? Yes, yelling at me - no words of comfort, no understanding my frustration, my need to vent. Just "knock it off, that's enough, you're breaking things". Really??? I broke nothing, I was trying to clean up a kitchen that I had made spotless earlier with much determination and over extended myself apparently. Yes, fine one moment, crash'n burn the next. And yes, I told him I would NOT knock it off, I had broke nothing. And yes, he walked away. Which made me cry. Which ticked me off, which made me cry some more. Did I mention he knows that a dirty kitchen makes me nuts?
He's a very compassionate man when it comes to other folks', their troubles and melt downs. I'm not permitted to have that I reckon. He has gone off to the bar to further induce an alcoholic glaze, while leaving me alone. With pneumonia and a 104 fever, not even a note by my bedside... did I mention I also had complete laryngitis?? My dad came down with lung cancer - stage 4 small cell. I got nothing from him then either. My mom became quite ill - I got demeaned for spending so much time with her, mamaw (who was legally blind) & the aunt (newly diagnosed with m.s.) and they just lived next door....
I'm blamed for the kids not having anything to do with us. "What did you say to piss them off this time?"
It's my fault the dogs don't behave better, although he let's them so what they will unless it's inconvenient for him. He threatens the with shock colors, why? Because he knows it upsets me. Same with the horses, he feeds them when he feels like it, proclaiming that I had spoiled them. I've tried explaining how their guts work to no avail.
Did I mention that I'm extremely irritable and over emotional?
I do not cry. It's a built in safety mechanism. Only those who I'm certain will not see it as a sign of weakness, demean me for doing it, or shove it in my face later are allowed to witness it. It's just that precious to me. I am human. I hurt, feel losses, pain like the rest. Have become conditioned throughout my life to internalize it. And I have been succeeding quite well, til I became ill.
I'm sick and tired of trying to explain, feeling guilty and rehashing over and over why I might be "fine" one moment, then not the next. Having been told (alot and usually in a not so nice tone...)over the past year things such as "I talk to one person over the phone in the morning and come home to someone else". I would love to look him in the eye and say something akin to "gee, I just do to piss you off and am so pleased it's working". I have no idea why the mood swings, dry sweats, extreme irritability - to go along with the "newer" symptoms of late.
Slamming of things in the kitchen, a thing that is NOT normal for me, brings the hubs into the kitchen, his brown eyes that familiar "I'm pissed and superior" green glaring at me, yelling... What??? Yes, yelling at me - no words of comfort, no understanding my frustration, my need to vent. Just "knock it off, that's enough, you're breaking things". Really??? I broke nothing, I was trying to clean up a kitchen that I had made spotless earlier with much determination and over extended myself apparently. Yes, fine one moment, crash'n burn the next. And yes, I told him I would NOT knock it off, I had broke nothing. And yes, he walked away. Which made me cry. Which ticked me off, which made me cry some more. Did I mention he knows that a dirty kitchen makes me nuts?
He's a very compassionate man when it comes to other folks', their troubles and melt downs. I'm not permitted to have that I reckon. He has gone off to the bar to further induce an alcoholic glaze, while leaving me alone. With pneumonia and a 104 fever, not even a note by my bedside... did I mention I also had complete laryngitis?? My dad came down with lung cancer - stage 4 small cell. I got nothing from him then either. My mom became quite ill - I got demeaned for spending so much time with her, mamaw (who was legally blind) & the aunt (newly diagnosed with m.s.) and they just lived next door....
I'm blamed for the kids not having anything to do with us. "What did you say to piss them off this time?"
It's my fault the dogs don't behave better, although he let's them so what they will unless it's inconvenient for him. He threatens the with shock colors, why? Because he knows it upsets me. Same with the horses, he feeds them when he feels like it, proclaiming that I had spoiled them. I've tried explaining how their guts work to no avail.
Did I mention that I'm extremely irritable and over emotional?
Friday, September 7, 2012
Food allergies?
I sent an email to a newly found Celiac sufferer, she's semi "new" to this disease yet is somehow so much wiser than I! I was telling her of my symptoms, the peripheral neuropathy that's been causin' me fits. She says she had some of the same and found out she was allergic to all things in the dairy department.
This got me to thinkin', although I don't partake in milk (I drink & cook with almond milk....more to that story in a few), but I am quite fond of cheese in certain things & have developed a yearnin' for frozen yogurt chocolate peanut butter smoothies. I try to remember to take a lactaid prior to their ingestion, but would not lie & say I do every time.
Upon browsing through the net to learn more about this, I stumbled on an enormous list of foods that can cause allergies. Here's the link, in case you are having difficulties as well: http://foodallergens.ifr.ac.uk/search.lasso
Imagine my surprise to find lettuce on the darned thing! Salad is a staple for me. I have several every day. Not an "ordinary" salad - mine are filled with leafy lettuces of every color, strawberries, raisins, carrots, bell peppers, maters, onions, freshly minced garlic, radishes, pecans - if I like it, it goes in it. At times I add leftovers to them. Salmon, chicken, pork chops - whatever's in the fridge. Most of which are on this darned list.
I'm not certain that I am lactose intolerant. All I can tell you is that from as far back as memory serves, cow's milk I've drank has always given me a gut ache. My daughter and the grands are lactose intolerant. I believe my mamaw was, but she like me was never tested for it. Soy milk did the same, accompanied by nausea. The almond milk, or so I am hoping, doesn't cause either of these. But, almonds are on the list.
I have made a vow to forgo everything on this massive list for a couple of weeks. See if my body quits misbehaving.
Wouldn't that be a blessing? Have tried for the past 5 years to get a doctor to run a food allergy test on me to no avail. This peck'n hunt, trial & error thing will no doubt make me nuts, but do it I will!
This got me to thinkin', although I don't partake in milk (I drink & cook with almond milk....more to that story in a few), but I am quite fond of cheese in certain things & have developed a yearnin' for frozen yogurt chocolate peanut butter smoothies. I try to remember to take a lactaid prior to their ingestion, but would not lie & say I do every time.
Upon browsing through the net to learn more about this, I stumbled on an enormous list of foods that can cause allergies. Here's the link, in case you are having difficulties as well: http://foodallergens.ifr.ac.uk/search.lasso
Imagine my surprise to find lettuce on the darned thing! Salad is a staple for me. I have several every day. Not an "ordinary" salad - mine are filled with leafy lettuces of every color, strawberries, raisins, carrots, bell peppers, maters, onions, freshly minced garlic, radishes, pecans - if I like it, it goes in it. At times I add leftovers to them. Salmon, chicken, pork chops - whatever's in the fridge. Most of which are on this darned list.
I'm not certain that I am lactose intolerant. All I can tell you is that from as far back as memory serves, cow's milk I've drank has always given me a gut ache. My daughter and the grands are lactose intolerant. I believe my mamaw was, but she like me was never tested for it. Soy milk did the same, accompanied by nausea. The almond milk, or so I am hoping, doesn't cause either of these. But, almonds are on the list.
I have made a vow to forgo everything on this massive list for a couple of weeks. See if my body quits misbehaving.
Wouldn't that be a blessing? Have tried for the past 5 years to get a doctor to run a food allergy test on me to no avail. This peck'n hunt, trial & error thing will no doubt make me nuts, but do it I will!
Setback - what the heck?
While the gait was still iffy, I thought I was doing pretty well yesterday. I'd been through my 12 hours of fasting for bloodwork. The gal at the lab thought I had wonderful veins and filled up 8 vials of blood. The pain was very much there, that needle stuck in my arm. It still hurts today, almost 16 hours later.
I've tried ice packs, massage, heat - nothing is making it feel better, but that's not my biggest complaint. My legs and feet had improved prior to the fasting. The numbness had subsided to where it only lived in the bottoms of my feet. I was quite tickled about it. My boa constrictor had removed himself from my rib cage, making breathing easier. Sensations other than pain, numbness and tingling were returning to my torso. Things were looking up, or so I had thought.
There's not enough ice packs to relieve the searing pain. I know, I've tried. The shocking cold is not helping now and I find that troubling. I've been pouring water, V-8 juice and almond milk down my gullet in hopes that it's dehydration, lack of magnesium -- something! Of course the doc's offices are closed today. Haven't figured out why they all think they need a 3 day weekend. I refuse to go to the emergency room, or a clinic as they have no answers either, but I'm sure they'd be more than happy to give me a script for something to take the pain away....
From all I've read, sugar is another culprit to aggravate this. I look at my 3" 3 ring binder filled with gluten free recipes and think, "crap, now I've got to figure out how to remove the processed sugar and re-invent those we adore". Oh well, will give me something to do if and when my hands are working better. Stirring ingredients is most painful. Measuring ingredients is quite comical to innocent bystanders.
So, I've not a clue what's put me back to this: pain, boa constrictors, complete body numbness, muscle spasms in the head. But will work diligently to make it go away!
I've tried ice packs, massage, heat - nothing is making it feel better, but that's not my biggest complaint. My legs and feet had improved prior to the fasting. The numbness had subsided to where it only lived in the bottoms of my feet. I was quite tickled about it. My boa constrictor had removed himself from my rib cage, making breathing easier. Sensations other than pain, numbness and tingling were returning to my torso. Things were looking up, or so I had thought.
There's not enough ice packs to relieve the searing pain. I know, I've tried. The shocking cold is not helping now and I find that troubling. I've been pouring water, V-8 juice and almond milk down my gullet in hopes that it's dehydration, lack of magnesium -- something! Of course the doc's offices are closed today. Haven't figured out why they all think they need a 3 day weekend. I refuse to go to the emergency room, or a clinic as they have no answers either, but I'm sure they'd be more than happy to give me a script for something to take the pain away....
From all I've read, sugar is another culprit to aggravate this. I look at my 3" 3 ring binder filled with gluten free recipes and think, "crap, now I've got to figure out how to remove the processed sugar and re-invent those we adore". Oh well, will give me something to do if and when my hands are working better. Stirring ingredients is most painful. Measuring ingredients is quite comical to innocent bystanders.
So, I've not a clue what's put me back to this: pain, boa constrictors, complete body numbness, muscle spasms in the head. But will work diligently to make it go away!
Wednesday, September 5, 2012
A beginning to testing.....
Had my doc's appointment late yesterday afternoon. The sweet staff there were a bit mortified by my presence. They've seen me (up until 2 months ago when I began feeling puny) weekly for the past 2 years. I always took mom for her follow-up appointments as well as her weekly blood check (she's on coumadin for blood clots in the lungs that developed after her colon resection). "I so want to give you a big hug", said our long term nurse. "Let me get a wheelchair", said another. I'm stubborn and declined, used the 4 pronged cane and made my way down the hallway.
Elevated blood pressure... well, for me anyhow. I typically run in the mid 90's/50's. Got a reading of 92/48 prior to leaving the house. Wasn't too bad after the long, jerky hike from the main lobby to the exam room - 114/78. Seemed as though I'd traveled a quarter mile.
I can see the shocked and concerned look on the doc's face. He asks questions, I answer them slowly. The day is getting late and it seems my thought process, speech and mobility decline as the day goes on. He's scratching his head, brow furrowed. The hubs and I try to reassure all that I was presenting worse last week. I don't think they believed either of us, but it was the truth.
The game plan? Well, he's not a clue and says he's way over his head. We've got to start somewhere to figure out where the best place is to send me. Lab work is our cheapest beginning (still no word on insurance coverage), so he rattles off a list. CBC, CMP, TSH, CRP, Sed Rate, HgAIC, T3optake, and some others that I cannot read. I call the lab to get pricing, doc says will be around $1,000. They can't tell me over the phone, says Michelle on the other end of the line. "You have to bring it in and us look at it in order for us to give you pricing."
Really?? Just another thing that's screwed up with our healthcare system. I reckon I'll cry on the way home after the plastic card gets smacked with that one!
Elevated blood pressure... well, for me anyhow. I typically run in the mid 90's/50's. Got a reading of 92/48 prior to leaving the house. Wasn't too bad after the long, jerky hike from the main lobby to the exam room - 114/78. Seemed as though I'd traveled a quarter mile.
I can see the shocked and concerned look on the doc's face. He asks questions, I answer them slowly. The day is getting late and it seems my thought process, speech and mobility decline as the day goes on. He's scratching his head, brow furrowed. The hubs and I try to reassure all that I was presenting worse last week. I don't think they believed either of us, but it was the truth.
The game plan? Well, he's not a clue and says he's way over his head. We've got to start somewhere to figure out where the best place is to send me. Lab work is our cheapest beginning (still no word on insurance coverage), so he rattles off a list. CBC, CMP, TSH, CRP, Sed Rate, HgAIC, T3optake, and some others that I cannot read. I call the lab to get pricing, doc says will be around $1,000. They can't tell me over the phone, says Michelle on the other end of the line. "You have to bring it in and us look at it in order for us to give you pricing."
Really?? Just another thing that's screwed up with our healthcare system. I reckon I'll cry on the way home after the plastic card gets smacked with that one!
Tuesday, September 4, 2012
Fear of the unknown
Yes, I have it - in full vivid color, might I add! Today is the day for a consult with a new physician. I've poured through the net and gathered up all sorts of information, blood work I'd like to see if is necessary to be done, etc.
Will he think I'm nuts because I am doing somewhat better? The gait isn't strong, but am without the cane today thus far (another 5 hrs til my appointment). My speech is clear as well. I'm certain a shower prior to going will trigger some symptoms, as well as the hike to the truck. Any exertion tends to cause me problems, no matter how minor. (loading the dishwasher, sweeping, etc) Hands are still horrid lil monkeys - have settled on the burning, tingling sensation today all the way up to my elbows. Upper arms feel as though they've been through a series of weight lifting and are "heavy". Waves seem to be pulling from the left ear to the nose...which is still numb. Feet are slightly numb along with the calves.
Awakened at 4am to a crushing spasm on the left back side of my rib cage, lasted for a couple of hours. Found it difficult to breath and was most unpleasant with the spasms/tics - whatever one wants to call 'em - coming from the left ear to the nose.
I've always have some pride ( I know, foolish at best) in the fact that I've got a high pain tolerance. My behavior has gotten to where it startles me Have always kept my emotions in check, for reasons I won't share here. They are now uncontrollable, I find myself in tears over nothing. Am most irritable and tend to fly off on rants that shouldn't be. This is not who I am. I want it to stop.
Will he think I'm nuts because I am doing somewhat better? The gait isn't strong, but am without the cane today thus far (another 5 hrs til my appointment). My speech is clear as well. I'm certain a shower prior to going will trigger some symptoms, as well as the hike to the truck. Any exertion tends to cause me problems, no matter how minor. (loading the dishwasher, sweeping, etc) Hands are still horrid lil monkeys - have settled on the burning, tingling sensation today all the way up to my elbows. Upper arms feel as though they've been through a series of weight lifting and are "heavy". Waves seem to be pulling from the left ear to the nose...which is still numb. Feet are slightly numb along with the calves.
Awakened at 4am to a crushing spasm on the left back side of my rib cage, lasted for a couple of hours. Found it difficult to breath and was most unpleasant with the spasms/tics - whatever one wants to call 'em - coming from the left ear to the nose.
I've always have some pride ( I know, foolish at best) in the fact that I've got a high pain tolerance. My behavior has gotten to where it startles me Have always kept my emotions in check, for reasons I won't share here. They are now uncontrollable, I find myself in tears over nothing. Am most irritable and tend to fly off on rants that shouldn't be. This is not who I am. I want it to stop.
Sunday, September 2, 2012
It started off a pretty good day
Then the bottom fell out. Why? I have no idea. Woke this mornin' with fairly good balance. No cane required. Speaking with clarity. The mind was in tune. Feet didn't burn, still numb along with the rest of me, but no pain there. The hands? Well, they are still on fire. Something akin to constant low voltage shock. My palms feel bruised. My fingers have become great contortionist and will go off in different directions at the oddest of times. But, hey, I have some motor skills in the lower half and the brain is keeping up.
I went out on the porch, got some free vitamin D. Watched the pups play, the wind gently sway the trees. Admired the cardinal flowers in bloom on the massive vine which has taken over my veggie garden. I don't care, it's beautiful and not harming a thing. I'm mesmerized by the twisting entanglement of it. It's miraculous how nature works. So many lovely flowers blooming in my little sanctuary.
Completed my mornin' chores - fed the pups, swept the kitchen & sunroom. A somewhat lazy Saturday. The hubs was off dove hunting, I was in hopes he was having a good time. He's had so much worry placed upon him with my "hiccups" and his mom having so many medical problems. Our families are getting older and it seems every week it's some new malady requiring at the very least hospitalization but usually some sort of surgery to correct. His plate is overflowing with worry and I feel even more helpless.
Feeling quite content with myself after the hubs & mom telling me how much better I looked, walked & talked. Small spasms continue to wrack my body, the numbness from breast down, face - but the rest is encouraging.
By early evening, I figured a shower was in order. I spent the day going through insurance applications (to see if they were all filled out) and the masses of information I've gathered on my symptoms and printed out to take to the doc. I compile the latter and stick them in a folder to take to a consult with a new physician. Perhaps together we can strike up a game plan I want to be prepared, as much as possible. Today I can semi-scribble, a bonus as I've not been able to write for over 3 weeks now.
I decide to shower early, giving my long hair a chance to dry (blow dryer you say? oh, I think not!). After telling the hubs my intentions I gather up my stuff and head to the bathroom, brush out my hair, set the water to tepid...best I can distinguish anyhow. I climb into the shower and before I can get the shampoo in my hair, my arms feel as though they weigh 40lbs each. Then I fall. Catching myself before tumbling completely out of my garden tub, I sit down on it's ledge. Turn the water off, regain some composure. Then try again. Three falls in one showering time. I'm exhausted by the time I get dried off and dressed....
Figuring to sit for a bit, waiting for some strength to return, I camp out in the bathroom for another 30 minutes. As I attempt to walk through the bedroom it becomes very apparent that I must get the cane. My legs are moving in jerky strides, muscles spasms feel as though they are squeezing the air out of my lungs. Hmm, this can't be good?
Never quite comprehended how many facial muscles one possesses. Nor was I aware at how many could spasm at the same time. Waves of it for hours. What's this? Any pressure on the stomach causes pain. I feel "overly full".
Hubs is most confused by this. He's not used to seeing my declines. Fear has gripped me. I have never been afraid for myself throughout a very colorful life. I do not like this, yet can't seem to shake it.
I am scared. A most uncomfortable feeling indeed.
I went out on the porch, got some free vitamin D. Watched the pups play, the wind gently sway the trees. Admired the cardinal flowers in bloom on the massive vine which has taken over my veggie garden. I don't care, it's beautiful and not harming a thing. I'm mesmerized by the twisting entanglement of it. It's miraculous how nature works. So many lovely flowers blooming in my little sanctuary.
Completed my mornin' chores - fed the pups, swept the kitchen & sunroom. A somewhat lazy Saturday. The hubs was off dove hunting, I was in hopes he was having a good time. He's had so much worry placed upon him with my "hiccups" and his mom having so many medical problems. Our families are getting older and it seems every week it's some new malady requiring at the very least hospitalization but usually some sort of surgery to correct. His plate is overflowing with worry and I feel even more helpless.
Feeling quite content with myself after the hubs & mom telling me how much better I looked, walked & talked. Small spasms continue to wrack my body, the numbness from breast down, face - but the rest is encouraging.
By early evening, I figured a shower was in order. I spent the day going through insurance applications (to see if they were all filled out) and the masses of information I've gathered on my symptoms and printed out to take to the doc. I compile the latter and stick them in a folder to take to a consult with a new physician. Perhaps together we can strike up a game plan I want to be prepared, as much as possible. Today I can semi-scribble, a bonus as I've not been able to write for over 3 weeks now.
I decide to shower early, giving my long hair a chance to dry (blow dryer you say? oh, I think not!). After telling the hubs my intentions I gather up my stuff and head to the bathroom, brush out my hair, set the water to tepid...best I can distinguish anyhow. I climb into the shower and before I can get the shampoo in my hair, my arms feel as though they weigh 40lbs each. Then I fall. Catching myself before tumbling completely out of my garden tub, I sit down on it's ledge. Turn the water off, regain some composure. Then try again. Three falls in one showering time. I'm exhausted by the time I get dried off and dressed....
Figuring to sit for a bit, waiting for some strength to return, I camp out in the bathroom for another 30 minutes. As I attempt to walk through the bedroom it becomes very apparent that I must get the cane. My legs are moving in jerky strides, muscles spasms feel as though they are squeezing the air out of my lungs. Hmm, this can't be good?
Never quite comprehended how many facial muscles one possesses. Nor was I aware at how many could spasm at the same time. Waves of it for hours. What's this? Any pressure on the stomach causes pain. I feel "overly full".
Hubs is most confused by this. He's not used to seeing my declines. Fear has gripped me. I have never been afraid for myself throughout a very colorful life. I do not like this, yet can't seem to shake it.
I am scared. A most uncomfortable feeling indeed.
Saturday, September 1, 2012
I so dislike this daily struggle!
It took me over an hour to change out the lens on my camera this morn', I missed the opportunity to capture the dawn yet again. Awakened by massive muscle spasms across my back, along the rib cage and ending in the center of my chest.
Seems each day has it's own set of challenges. A constant cramp resides from the back of my left knee, traveling down the back of my calf. Stairs are no longer just a challenge to master, but send waves of pain throughout my lower body.
On a positive note, the left side of my mouth isn't completely numb. Porcupine quills have left my feet, if even just temporarily. I take each inkling of improvement as a good sign and am trying my best not to be discouraged by new developments. My resolve does waiver at times and I work hard to dissuade the depression that seems to inevitably follow when one's body doesn't behave and you just don't know why.
I feel fortunate that after about 30 snaps, I was able to capture the moon's rising last eve. This muscle weakness is driving me nuts! This is the best of 'em, slightly fuzzy from my unsteadiness, couldn't get the tripod set up...shame that I couldn't share the shadows, crevices and rugged terrain that I could see within the lens.
Friday, August 31, 2012
Don't believe....and alienation
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..
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..
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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