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?
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