Well now. Been a while since I had one, so tonight, the night before a busy work day, we shall have a restless night with everything on alert. Numbness, cramps, tingles, jolts, the works. Entire left leg and left arm, right hand, right foot, right cheek. Whee. Not sure where this one came from. Was it the road trip to and from the Farmstead over the weekend? Is it the change in weather with the pending blizzards? Is it stress from a busy work week? Whee.
Found out earlier this month that my rheumatologist is moving to New York, ending his time at St. A's the end of the year. So, I had to make a new appointment with the new rheumatologist. Instead of an appointment on the 26th of January, we now get to wait until the 10th of March. And we get to start all over again. But, hopefully, there will be quicker answers?
My wish? Just to have someone willing to receive my phone call when this crap gets out of hand and starts to push the tears out of the tear ducts. Someone just to be there. A human. I guess if YHWH ever does get tired of listening to me whine and whimper and cry, He will send someone along in His time. Thankfully, He never gets tired of me, as quickly as I get tired of this life of buzzing.
Thursday, December 09, 2010
Oh sweet bliss. Having two days off from the show, and I was starting to walk with a slight spring in my step. It was feeling oh so good, relatively tingle-less.
And then back to the show last night. Now this morning, uff da. Both feet numb and tingling. The right leg from the knee downward. My right arm. My left elbow. That's just the tingles and the numbness. Pertenearly every joint, well, more like the tissues and/or tendons connecting each joint, are screaming in harmony.
So, yeah, glad that I did not audition for "Screwtape" as I am sure that if I were cast in another show, my body probably would just check out and depart on me. Hopefully I am sure that I should be recuperated enough to audition for the next show then after that.
Meanwhile, haven't really caught up on stuff at the apartment. Laundry is on the couch waiting to be folded and put away. Dishes are come and go. Did get the checking account and such caught up. The bathroom, ungh, hopefully there might be a bit of energy on Saturday to get that cleaned. If not, I'm the only one living there, right?
But, overall, the play as always has been a wonderful time. It's been a great cast, and I never knew how much of a delight it would be to play Marley's Ghost or Bob Cratchit!
And then back to the show last night. Now this morning, uff da. Both feet numb and tingling. The right leg from the knee downward. My right arm. My left elbow. That's just the tingles and the numbness. Pertenearly every joint, well, more like the tissues and/or tendons connecting each joint, are screaming in harmony.
So, yeah, glad that I did not audition for "Screwtape" as I am sure that if I were cast in another show, my body probably would just check out and depart on me. Hopefully I am sure that I should be recuperated enough to audition for the next show then after that.
Meanwhile, haven't really caught up on stuff at the apartment. Laundry is on the couch waiting to be folded and put away. Dishes are come and go. Did get the checking account and such caught up. The bathroom, ungh, hopefully there might be a bit of energy on Saturday to get that cleaned. If not, I'm the only one living there, right?
But, overall, the play as always has been a wonderful time. It's been a great cast, and I never knew how much of a delight it would be to play Marley's Ghost or Bob Cratchit!
Tuesday, November 30, 2010
Wow, yeah. I am getting more and more and more convinced that I won't be auditioning for the next show, "Screwtape". May be this be my last show? I cannot handle this any more alone. I am so flipping sore and dog-tired after rehearsals. And then come home to a lonely apartment to muster up strength to stand and fix something to eat. Let alone the fact that household stuff gets ignored. Getting up the excitement to arise in the morning is disappearing as well. It aches so much just to gather the will to get ready for the day. I so want to just fetal the day through. How the dickens did Ol' Job carry through all his trials and tribulations? Who's got my back? Who is there to let me know to carry on?
Wednesday, November 17, 2010
My Facebook status from this morning: "Fact -- My body revolts against rehearsals w/ flareups of numbness, tinglings, and jolts the day after; and this after but only mere rehearsals. What may come from full performances, I ask. I say, "Bring it on!" in my best efforted British dialect of your choosing..."
The truth? It sucks. It really, really is a chore to get going the morning after rehearsal. And last night was a very, very easy, mild rehearsal. Today, what is numb and tingling? Left hand -- little finger, ring finger, middle finger to the palm to the elbow. Right hand, heel of palm. Right knee, bottom of right foot. Back of left calf and top of left foot. Right cheek/jaw. And the low back is angry.
What is going to happen when I put my 114% in to the performances, night after night? I really want to audition for the next show, "Screwtape", but I am having great difficulty in mustering up any sort of enthusiasm to endure another show, back to back.
This is my thorn, for it has not slain me, just given me inconvenience. Who in sacred Judaeo-Christian writ ever lived a total tip-toe-through-the-tulips life of complete bliss? And yet, their faith in YHWH never failed. Even though my flesh so desires to be done and gone, the spirit within plods forward.
So yeah, the body hurts something crazy and friends probably just over time eventually tune me out, I know full well that the Triune God will never leave me.
The truth? It sucks. It really, really is a chore to get going the morning after rehearsal. And last night was a very, very easy, mild rehearsal. Today, what is numb and tingling? Left hand -- little finger, ring finger, middle finger to the palm to the elbow. Right hand, heel of palm. Right knee, bottom of right foot. Back of left calf and top of left foot. Right cheek/jaw. And the low back is angry.
What is going to happen when I put my 114% in to the performances, night after night? I really want to audition for the next show, "Screwtape", but I am having great difficulty in mustering up any sort of enthusiasm to endure another show, back to back.
This is my thorn, for it has not slain me, just given me inconvenience. Who in sacred Judaeo-Christian writ ever lived a total tip-toe-through-the-tulips life of complete bliss? And yet, their faith in YHWH never failed. Even though my flesh so desires to be done and gone, the spirit within plods forward.
So yeah, the body hurts something crazy and friends probably just over time eventually tune me out, I know full well that the Triune God will never leave me.
Wednesday, November 9, 2010
The cheek and its wonderfulness dissipated on Saturday, the feet calmed down enough to get some work done around the apartment. Then the jolts came visiting both feet on Sunday. But Monday, a day off from work, not too shabby. My fears have come to fruition. With rehearsals for "A Christmas Carol", being on my feet for a couple hours each evening, I am in a world of wonder the next day. Mostly completely exhaustion in both feet and legs. My low back is whining too. But, it is all for the love of the theatre, right? Right?
Friday, November 5, 2010
After a peaceful, quiet week, how about something new? In addition to the left foot, especially the heel buzzing with needles and spikes, my right cheek is tingling with a needle piercing the back of my right eyeball. So, limping off the left foot with the right side of my face not really perky. Another observation as of late... seems when there isn't any buzzing or such and the body is back in its "relaxed" stage, I tend to pee a whole lot more, frequency and quantity. Weird. The human body, how fun.
Tuesday, October 26, 2010
Well now, wasn't that special. Had a third appt with the rheumatologist this morning. And so still nothing. Right now the doc is looking at "Undifferentiated Inflammatory Arthropathy" meaning that it is somewhere between rheumatoid arthritis and spondylitis, or something else, or neither of them. The spondylitis gene marker HLA-B27 is negative. He thinks I should see the neurologist again for the neuropathies, especially the burning in the sole of the feet. He gave me prescripts for Plaquenil for the inflammations, Vit D to get that continuing on the rise, Prednisone until the Plaquenil kicks in, and a sleep aid specific for the inflammations. Another blood draw in nine weeks, and another visit in three months. And so on. I'm nearly reaching the end of frustration, not only with the continued not knowing, but especially in the rising out-of-pocket accumulation at St. A's. I feel like I have three personalities in me -- Dad who would just deal with it; Mom who would cling to Faith; and Kevin who just wants to fetal position up and bawl...
Wednesday, October 20, 2010
Attended a Spondylitis Support group on Saturday at the Library and discovered 1] I'm not alone; 2] It is OK to pace yourself and not feel obligated to accept every responsibility and/or invite; 3] Mind over Body; 4] It will never end; all in all, it was a good session.
Then Saturday afternoon, despite the warnings of the right leg, I made potet klubb with Barb for the Bismarck Tengesdal cousins. Yeah, that was pleasant. By the end of the evening, the electric jolts starting singing their harmonies. The collar bone, right shoulder socket, and shoulder blade tuned in as well. Not much sleep.
Went to church Sunday morn, but that sitting was too much. Spent the afternoon on the couch. Made it to auditions that evening. Monday the right foot had calmed down for the most part to just a couple toes tingling. Tuesday, well now, that was different. Different as in a new experience. Bottom of both feet were on fire. The right foot no tingles. The left foot full of them, with the jolts. Went to bed at eight, and now groggily awake as it's too much.
Then Saturday afternoon, despite the warnings of the right leg, I made potet klubb with Barb for the Bismarck Tengesdal cousins. Yeah, that was pleasant. By the end of the evening, the electric jolts starting singing their harmonies. The collar bone, right shoulder socket, and shoulder blade tuned in as well. Not much sleep.
Went to church Sunday morn, but that sitting was too much. Spent the afternoon on the couch. Made it to auditions that evening. Monday the right foot had calmed down for the most part to just a couple toes tingling. Tuesday, well now, that was different. Different as in a new experience. Bottom of both feet were on fire. The right foot no tingles. The left foot full of them, with the jolts. Went to bed at eight, and now groggily awake as it's too much.
Tuesday, September 21, 2010
Last evening, I had make-up call for Living Masterpieces. Afterwords I helped a bit with basic whatever needed to get done around the auditorium. So, yeah, what little I did last night, set the right foot on anger mode this morning, and now the left foot has joined in the cacophony. Good flippin' grief. I didn't do any thing last night, and this is the gratitude I get?! Ungh. If'n that rheumatologist doesn't get any thing going, how the heck am I supposed to be excited about even being on stage any more?! What's the point with any thing if all my body wants to do is recline with my legs amply propped after work? What. Is. The. Point.
Tuesday, September 14, 2010
Here's a chuckle, and an answer for those who've asked what neuropathy feels like... Basically, a mean flare-up of the aggravated nerve endings can be best described as shown in this video --
http://www.youtube.com/watch?v=Vfb84URAsto
http://www.youtube.com/watch?v=Vfb84URAsto
Sunday, September 12, 2010
Well, that was a fun day. But today, just the outside of the left foot and the right arm. The hand is a bit more calm. Was able to get out and to church this morn. Then in the afternoon, trekked around shopping for a TV set. That was exhausting. The thing that adds to the exhaustion is that my muscles are so tensed up during the tingling and the jolting, that when the tingles go away, the muscles relax, and they are done give out tuckered. So, yeah, about that. Time for slumber and we'll see what's tingling in the morn.
Saturday, September 11, 2010
Well, almost over a month completely relatively free. A few tingles here and there, but nothing notable. Even made a road-trip to Minneapolis in August, with my gal pal sis Nancy doing a lot of the driving. We did a ton of walking, and no flare-ups.
Back home in Bismarck, one Saturday evening I was even able to walk downtown to join friends at Fiesta, and no flare-ups from that. It's been the longest while since I was able to do that much walking.
Did make a roadtrip up to the Farmstead one wknd, and there were a few minor moments of buzzing after that.
But then this past week, it's back. Not sure if it was helping my cousin around in her wheelchair, or the random roadtrip and walking about in Fargo, or standing for several hours running spotlight, or a change in weather or what. But Friday night, I needed to succumb to a hydrocodone if'n I was to get any sleep. That and a glass of wine and some Tylenol.
But as far as the buzzing and jolts, nope, they were in full force on Saturday. Both legs and the entire right arm were alive. The feet did not want me walking, and the right hand did not want me doing any thing. So, I was pretty much horizontal the day thru. Gratefully I had some leftover soup so that wasn't much of an effort. Supper was a couple peanut butter sandwiches which needed some left-handed spreading dexterity.
Oh, and the TV died. So, yeah, lying on the couch staring at the ceiling. Did some reading of a couple scripts for the season. How long will this round last...
Back home in Bismarck, one Saturday evening I was even able to walk downtown to join friends at Fiesta, and no flare-ups from that. It's been the longest while since I was able to do that much walking.
Did make a roadtrip up to the Farmstead one wknd, and there were a few minor moments of buzzing after that.
But then this past week, it's back. Not sure if it was helping my cousin around in her wheelchair, or the random roadtrip and walking about in Fargo, or standing for several hours running spotlight, or a change in weather or what. But Friday night, I needed to succumb to a hydrocodone if'n I was to get any sleep. That and a glass of wine and some Tylenol.
But as far as the buzzing and jolts, nope, they were in full force on Saturday. Both legs and the entire right arm were alive. The feet did not want me walking, and the right hand did not want me doing any thing. So, I was pretty much horizontal the day thru. Gratefully I had some leftover soup so that wasn't much of an effort. Supper was a couple peanut butter sandwiches which needed some left-handed spreading dexterity.
Oh, and the TV died. So, yeah, lying on the couch staring at the ceiling. Did some reading of a couple scripts for the season. How long will this round last...
Wednesday, July 28, 2010
Met up with the rheumatologist Tuesday... Basically, not much to report. Autoimmune levels are a bit questionable but not threatening. Liver levels are a concern. Vitamin D levels are way too low. Rheumatoid factors are not much a worry. So, another round of Vitamin D for eight weeks, then blood work for liver and Vitamin D, then another follow-up in three months. Gave me a prescription for Prednisone to help with the flare-ups as needed. So, nothing major/evil/life-threatening at least.
Wednesday, July 21, 2010
Had a follow-up blood draw for the liver levels which came back with lowered liver levels. The only change has been that I did not renew the Neurontin prescription since that wasn't doing any thing and I am waiting for results back from the rheumatologist.
Rehearsals out at Fort Lincoln have been a bit of challenge. Well, just only the walk to the theatre, which is a quarter mile from the parking lot.
As far as the tingling and such, I've enjoyed a few weeks of relatively-speaking blissful quietness. Then it came back. Yesterday was a chore walking about. The only good spot on my left foot was my big toe. The right heel and achilles tendon area were buzzing. Both feet were quite hot. And of course, a few electric jolts. Knew I would not be able to sleep, so took a hydrocodone, and was awake from two in the morn until well past four fidgeting and tossing and turning and trying to find some comfortable spot.
Emailed in to work that I would be late, needed to get a couple more hours of some sleep. Had a client coming in at noon. At least the left foot decided to share the joy with other parts of the bod -- right calf and right thumb and forearm. Made it in by ten, and about eleven found out that the client would not be able to make it in today. So, groggy and tingly.
Next Tuesday, I await. Hopefully the results will be in, and a plan to fruitfully deal with this stuff will commence...
Rehearsals out at Fort Lincoln have been a bit of challenge. Well, just only the walk to the theatre, which is a quarter mile from the parking lot.
As far as the tingling and such, I've enjoyed a few weeks of relatively-speaking blissful quietness. Then it came back. Yesterday was a chore walking about. The only good spot on my left foot was my big toe. The right heel and achilles tendon area were buzzing. Both feet were quite hot. And of course, a few electric jolts. Knew I would not be able to sleep, so took a hydrocodone, and was awake from two in the morn until well past four fidgeting and tossing and turning and trying to find some comfortable spot.
Emailed in to work that I would be late, needed to get a couple more hours of some sleep. Had a client coming in at noon. At least the left foot decided to share the joy with other parts of the bod -- right calf and right thumb and forearm. Made it in by ten, and about eleven found out that the client would not be able to make it in today. So, groggy and tingly.
Next Tuesday, I await. Hopefully the results will be in, and a plan to fruitfully deal with this stuff will commence...
Saturday, June 19, 2010
So, to sum up the week best. Monday morning was the CT with a followup with Dr. Jondahl at 1 p.m. The CT showed nothing. The organs are all fine. My blood just doesn't process the fat correctly/efficiently. Another blood draw in a month to see what happens. Friday morning appointment with the rheumatologist, Dr. Prashant Kaushik. He reviewed my chart, my symptoms, my vitals, my history, asking many pointed questions. Then he notices my last name and asks what heritage I am. I tell him full-blooded Norwegian. He gives me this "Ah-Ha!" look. He tells me from all my symptoms and history, he can be pretty sure that it's this specific type of arthritis that can be in young men of Scandinavian lineage. With over twenty years in the specialty, he's quite confident it should be spondylitis, which symptoms and manifestations can include stiff back pain, neck pain, colitis, aches and pains, neuropathy, and liver issues. But since I have that elevated rheumatoid factor, he wanted to draw more blood (seven vials) and urine to send to Mayo and a specialty clinic in Utah to check for other rheumatoid/arthritis and/or auto-immune issues. So, it was nice to have a doc finally have a pointed direction to follow. Thank You Lord! I have a follow-up in a month to find out what the blood work can show. And of course, I am involved in a Northern Plains Dance production tonight which has been stirring up the aches. For the love of theatre, of course!
Friday, June 11, 2010
So, got a call today from my neurologist's nurse. The bloodwork on Tuesday morning came back with a slightly elevated rheumatoid factor. Therefore, he is wanting me to see a rheumatologist next Friday. My brief investigations online about such, indicate that the cause would be either rheumatoid arthritis or some other auto-immune concern. Then Monday morning I am having a barium contrast CT for the liver and gallbladder b/c of continual rising liver levels as discovered by my regular doc. Yay! Mixed Berry Smoothie for breakfast! Yay! Just hoping to keep y'all in the loop.
Monday, June 07, 2010
The neurologist nurse called Friday, said that the doc wants to do another deeper blood test, so cancel the appointment with the rheumatologist on the 18th. Set up for blood draw Monday morning. Saturday received a letter from my primary care physician about the liver tests. Yeah, my gut has been rough, and lot of random acid reflux. The liver levels are increasing, so wanted me to call to schedule a CT of the liver and gall bladder. Went in this morning for the blood draw. Later the nurse called to say "Whoops". It was supposed to have been a 24-hour alcohol and 12-hour food/liquid fast. So, rescheduled another blood draw for Tuesday morning. This time they're looking for rheumatoid arthritis and something about lipid metabolism and HDL. When the results of that test come back from Mayo, we need to have a follow-up with the doc since it's been since February since I've seen him. Everything has been through his nurse. Called my primary care physician about the CT scan. It's to be a barium contrast scan, with a 12-hour fast. His nurse phoned back with an appointment for next Monday with a follow-up with the doc later that day. Oh Lord Above, please direct them to the correct spot, soon. Thank you.
Monday, May 31, 2010
After blood work for Vitamin D3 deficiency showed nothing for the neuropathy, I was frustrated. Well, finally asked the neurologist for a referral to a rheumatologist since the neuropathy wasn't changing and a cause wasn't being found. His nurse said that she would try, but this particular rheumatolgist would be booked through the summer. This weekend, I received the New Patient Survey for an appointment with the rheumatologist on June 18th.
Tuesday, May 04, 2010
Whee! What a day. Uff da. Last week was rather bearable, a few minor buzzes here and there. Been increasing since Saturday, when it eliminated me from going to my supervisor's annual spring party. I did make it to Mike and Kurt's for NASCAR, but I was sitting on my butt all evening. Basically been jumping from one foot to the next, inside the foot or the outside. Today, wow. My right leg not only was buzzing with random electric jolts, but it started heating up something crazy. And now in addition to both feet buzzing, so is my left cheek. Crazy, no?
Tuesday, April 27, 2010
Called the doc last week. More blood work to see where the Vitamin D level is in my system. Up the Neurontin to 600mg at four times a day. Most of the week the buzzing was in little patches here and there. One day in the left thumb, next day the right hand, the next day the right heel, the next day the right middle finger, etc. A nomadic neuropathy? The nurse phoned yesterday with the news that the Vitamin D is still deficient. Up from 11 units to 20. So need to up the Vitamin D from one 50,000 unit per week, to two per week for a month and come back for another blood draw.
Saturday, April 17, 2010
Well now, hasn't this been a fun few days. I really enjoyed last Thursday and Friday with no tingling anywhere. No where. This week the left foot started a bit on Wednesday. Went to Walking With Dinosaurs at the Civic Center with Nancy and Kory. Stadium seating, fun. Afterwords we decided to go out for supper and I suggested walking to Ground Round as it was but only a block away. Not sure if that was what stirred up the nerves or what. By end of the workday on Thursday, the entire left leg was tingling with the occasional electric jolt. Did go to Cinema 100 and later over to Paul and Nicole's for Project Runway even though the leg was quite fidgety. Glass of wine and hydrocodone should help me sleep. Nope. So, was too exhausted to go to work on Friday, plus literally, I did not have a leg to stand on... Bed and couch for the entire day. The only spot I could walk on the left foot was the outside edge of the heel. That is one good thing about having a tiny apartment is that there isn't far to hobble from Point A to Point B. Myrna phoned last night. Despite all her ailments, she just seems to know when to phone to check up on me. Had a better night's sleep, no electric jolts jarring me awake. This morning there is a bit more area where I can step on. I plan to get some stuff done around the apartment, just will take longer as I need to sit and rest in between. Finished the Vitamin D yesterday, will call the neurologist on Monday to figure out what next as that hasn't done anything. Onward, yep.
Saturday, March 27, 2010
Of course it returned. Friday morning awoke to the left knee to the toes buzzing, and the outside of my right heel as well. Bearable in the sense at least there weren't any jolts in the mix. Until the middle of the show last night, and then the left foot commenced with the electrical jolts. At the cast party met Julie's cousin(?) who has been dealing with neuropathy for 20 years. And she is as chipper as ever. So, I guess it can be manageable, smiling and tingling at the same time! She recommended an inversion table from KMart, only $100. A thought. Found the best way to sleep last night, along with a hydrocodone, was for my feet to be hanging over the edge of the bed propped up. They were cold, but at least nothing was touching them. This morning the right heel and the left toes and ball are in full force. I was planning to go to Hamlet, the opera, at noon, but yeah, sitting in a theater seat for four hours would not be fun. So, the couch and movies and NASCAR for the afternoon. At least I'll have an authentic limp for my character on stage tonight!
Thursday, March 25, 2010
What a wonderful week or so. Totally grateful and ecstatic for a week of nothingness. Nothing. No buzzing. No ants. No jolts. Mayhaps the Vitamin D is doing the trick. Then I woke up this morning. Wow, where did that come from? Both knees and the left pointer finger are beginning to buzz. Maybe it will go away? We shall see how this all plays out...
Saturday, March 06, 2010
Well now, wasn't that a fun time. Every thing, tingles and jolts, pretty much departed by Thursday. Three solid days, all in one area. That was totally new. "Normally" it is in one spot one day, then off to another spot the next day. Now today, after helping paint the set, no issues. Weird. Usually painting and standing and bending and stretching would set everything off, but nope, not this time. Oh well, enjoy it while it lasts, and keep on continuing to rock Philippians 4! Nap time, and we will see what dancing tonight will do to me...
Tuesday, March 02, 2010
So instead of departing one region, it visits the entire left side. Shoulder to fingertips, knee to toes. Tingling and numerous electrical jolts. I detest how I allow it to get me all cranky. Listening to co-workers about having a headache, hating having to come to work, bitching about this or that, I just deal quietly as best as possible. All my life, anytime I state the fact of some irritating ache, it's the same -- quit your complaining Kevin! I just want a quiet listening ear or an understanding gentle hug. I'm tired of it all. Hold me Jesus. Off to rehearsal with a happy-smiley facade...
Monday, March 01, 2010
What a day. Simply started yesterday morn with a bit of tingling in my left ring finger. The day progressed and so did the tingling. Today the entire left arm is full of fire ants and random electric jolts. It hurts to close my hand or bend my elbow. Days such these just wipe me out physically. Everything just tenses right up. But, it will be gone in a day or two heading off to another appendage to interrupt. Right? Please?
Sunday, February 21, 2010
The tatt process on Friday nullified the neuropathy for a spell, but it couldn't stay away for long. So, yeah, today it's been visiting the left heel in the form of a red hot railroad spike, with a mosh pit of fire ants doing a crazy jig. So, thankfully had NASCAR to entertain me whilst I lounged on the couch with my feet in the air.
Monday, February 15, 2010
Went back to the neuro on Wednesday, February 10th. Had been on 300mg of the Neurontin 3x per day, then that got bumped up to 400mg 4x per day. Tingling spells and electric jolts continued. Neuro wanted to do another visit. Did a blood draw to look for any vitamin deficiencies, and scheduled an MRI of the upper and mid spine. MRI on Friday showed nothing more. Blood work from Wednesday showed a Vitamin D3 deficiency. Supposed to be 30-80 units, and mine was at 11. The neuro thinks that might be the cause for the neuropathy, so now on a weekly regimen of one 50,000 unit of Vitamin D per week for ten weeks, and then see where we go from there. And continue the neurontin, just in case. Ungh. :-\ How much longer Lord?
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