12/4/12 4:00 managed to get 2 panels and 2 canvas primed today. Cleaned the studio up a bit slept for an hour since I’ve been up since 1am. Hips are pretty sure they are being ripped out of their sockets so I’m going to be done for a bit. And yes the page two. I’m sure your tired of scrolling all the way down that giant freakin list I posts, I know I am. So if you’ve found yourself here on page two and have know idea what the hell I’m talking about flip to page one 🙂
Anyhow pain level an steady 6-7 tonight with spike to 8. So much love to all I’m going to make dinner and get some rest so I can join you people in Australia at a reasonable hour.
12/4/12 6:25pm pst
Probably my last post for the day, waiting on 8 pm so I can take my meds and go to bed, so tired, so sore just need sleep. But it was a great day for many reasons. To all be well, be brave and love.
12/5/12 4:30 am pst
Been up since 3:30 I guess you could say I slept in. Nothing new to report stiff, tremor, right hip is fighting me this morning. It doesn’t want to cooperate with me, pain level is very high. Today I’ll be helping a friend out and then going to the Gallery Reception and Art walk. A little bummed though. I have to go solo, 😦 and I hate going to social events by myself. I do have a couple lady friends that I could reach out to and see if they would like to go. The ms. doesn’t really support my endeavors so I got shot down when I asked for her hand to tonight’s gala. Oh well It’s wasn’t a surprise I just figured asking her first was the right thing to do. Makes me a bit sad though. Anyhow I well I’ll try not to dwell on it.
Life’s a big place and many things happen.
12/5/12 update 10:08 am
PD is a fickle b#+%h woke up felt ok, ran normal errands felt ok. 9:45 hit with the mother load of fatigue not the oh I’m a little sleepy but oh fck I need to pull the car over and try not dying kind of fatigue. So that’s what I’m doing, not driving, not dying. Going to rest my eyes and get back on the road.
So after getting a few hrs of sleep I woke in a very introspective mood. With all the fuss about the opening I didn’t really have time to think about how seeing that painting I did for my father made me feel. It was also hard to be at the opening by myself, I’m not sure how many of you out there have situations where a person that theatrically should support you doesn’t, but I do. Let’s just say with out going into to much detail out of respect that it’s often viewed at home that my Art is an unnecessary expense, I’ll leave it at that. Back to my father. He used to own a video production company as well as write code and create systems for warehouse inventory management systems. So if any of you work for Krogers (market) in the warehouse then you see a small part of my dad everyday you go to work. Any how about 4 hours before he died he sent me an email wishing me a happy birthday and that he was going to go test out this new motion harness for his film camera and would see me the next day as it would be my 37th birthday. That night I found out he died of a massive heart attack while driving home after the video shoot. I’ve seen his last film, you can hear him panting from the weight of the unit, I can almost sense that at some point during the shoot that he felt something was wrong. My dad didn’t pant or run out of breath, he was an ultra marathon runner, black belt and healthier at 60 than I’ve ever been. Any how introspective that’s me today. Thinking of my dad, wishing I had a different home life, and heavily contemplative of my art. And wondering about my life with PD, the changes over all, the daily struggles, the depression, anxiety and the pain. The uncertain future that life holds, but that’s not different than anyone I suppose. Ok that’s enough sharing for me for a while. I hope the world holds you all close and keeps you safe today.
12/7/12 4:00 am pst
Well I managed to sleep for about an hour and a 1/2 last night went to bed at 2:30 up at 4:04 I did however have a 2 hr nap. Yesterday afternoon. I think i should really ban naps. This morning I feel like a shuffling old man, my hands are shaky making it hard to write this entry, third attempt thus far and I’ve managed to get this far. Right hips fighting me again this morning, a deep seeded pain extending down the back of my right thigh. But ya know things to do things to do. The dyskinesia today so far has been pretty present lots of wiggles. Shoulder sound like my bones have been replaced with stalks of broken celery , crunch, crunch, crunch..
I’m doing a bit of research before my next post I have something to show but also many words and theory as well, bunch of arty crap that’s filled my thoughts since the show. Some times I feel like a man born in the wrong era, not a digital art guy, don’t like to paint barns, kittens, birds or landscapes. Don’t give a shit if the shadows are ” correct” certainly don’t believe that the more paint you slap on a canvas makes it better. I don’t know, just seems like the passion has gone out of art, I relate more to the eccentrics of years gone by. Bukowski, Emerson,Pollock, Picasso, Dali just to name a few. People that broke free of perceived conventions, Robyn made a comment the other day about my art being the healing air I breath and it’s so true. But it’s more than that it’s about the souls expression and the break of conformity. Any how I’ll save all that crap for the post, plus my arms are cramping I can’t type anymore for a while. Much love to all, Be brave, have hope and try on this day to give more than you receive so that others may share in your strength.
12/7/12 3:25 pm pst
Today is Sooooo shaky damn, 1 pm fatigue set in pretty hard after pills. Hip pain and shoulder 6-7 muscle weakness in both thighs substantial today making walking and standing for any length of time a challenge. Huge bout of anxiety/depression this morning. Things are going to start getting tricky because my short term leave full pay is up so I go to 60% of my pay 😦 but I’m thankful because it’s better than nothing and really what do I expect I’m not working. So be thankful, make paint last, make smaller pieces, sell some damn art.. my hands are so shaky it’s taken for ever to make this entry. Need to rest, missed nap time.
12/8/12 1:49 am
So I guess it’s tomorrow but since I haven’t slept it’s still today for me. I’ve been up all night chasing demons and thinking about the creative process, muses and lovers, wives and girl friends and dead people all kinds of stuff really. I took extra pain pills so I could well not be in pain but they keep me up. So here we are you and me and the TV and the paint and prose over there on the other couch making out like school kids. I think I’m going to write my book this year coming 2013. Assuming we all make it past the 21st then if we’re all good after holiday I’ll start.
2:01 am it’s late and I’m actually starting to get tired.
Much love to all thanks for putting up with the poetic ramblings of a mad man tonight.
What? I slept, kinda. Today will be full of pills and paint. No more words though I’ve used mine up. Now I’m up for a reason in 24 minutes it’s time to start taking my pills yay more tiny little Parkison’s pills. I’ve mentioned it before but really who’s the jack ass that made PD meds so F’n tiny. It’s like a bad joke let make the shaky guy with crappy fine motor skills pick up these tiny little buggers. Ha, Ha…… No… So really that funny, but like any good pill ninja I’ve become rather skilled I can take them driving with one hand if I have to but it’s not the best of ideas. Anyhow I don’t really have much to say since I’ve been up all night saying it so yeah, I’m not sure if I should say goodnight/morning or what so.
Be brave have hope, be strong and live your life and thrive!!!
So what does any self respecting poetish painter do after getting a whopping 6 hrs of sleep in the past 48?
1. Paint more!!!
2. Lay down in the most comfy cozy spot one can find make a fire / shower / put pj’s back on sleep and eat lunch.
Honestly I think I’m gonna try option #2 for a while.
12/8/12 6:37 pm
I haven’t taken a day off like I did today in a long, long time I snacked ate lite, slept. I poked my head in the studio maybe half a dozen times but didn’t paint a drop and I’m going nuts but it’s ok I really doubt that I’ll sleep so I’ll most likely have plenty of time. Of coarse for every action their is an equal and opposite reaction.
I hope your days have been blessed.
3:30 pm pst
Today I fight the pain in my hips in a huge way, over the past two weeks, but especially the past 4 days my days and nights have officially flipped. Last night I was up until 5:00 AM today. Slept from 5a-9:30a then I was up, now it’s 3:30 and I’m getting tired again some plain sleepy some fatigue from the PD. or meds. At this point theirs not difference between the disease and the side effects of the meds the happen together all the time, ok nap time for 1/2 hr. much love Benjamin
12/9/12 6:00 pm
Ok the next time I say I’m going to lay down at 3p and take a nap someone stop me. It’s now 6p three hrs later and I’m screwed I’m going to be up all night, well maybe I’m still pretty tired and I couldn’t remember I’d I took my meds so I just took another dose. So I might just get really really wiggly tonight. To much sinemet will do that. I guess I’m just wait and see how it goes.
12/10/12 3:00 pm pst
Well I managed to rest at night last night. Found my way to the sleeping couch around 12/1 something like that unfortunate because of my pain pills I woke up late 6 am an hr late for my pills. Making it one hell of a painful day. See if I don’t take my pills on time my muscles start to do the constriction dance so if I stay ahead of it with my meds then good but once it starts it’s hard to stop. I have a huge migraine today as well as my left hip and shoulder pain has been spiking around 8. I’m going to take a nap for a bit I’ve for a birthday dinner to attend tonight and the expectation when we go out always feels like I need to be as symptom free as possible as to not make people uncomfortable. Much love Benjamin
Good morning to the world. I slept at night!! Ha!! Woke up early enough to be on track with my meds and my pain level is its normal 5-6 so it’s going to be an ok day. As soon as I can feel my left arm and leg…. 🙂 no it will still be a good day even if I can feel my leg. I know it’s their it’s wearing my slipper.
I have the day free today after morning routine. I’m meeting a friend for coffee this morning which is going to be nice. Symptoms today so far are manageable hands shaky little bit and semi wiggly. I’ve been pretty peaceful in my heart these past few days. Talk to you all later.
After a day of pretending I can keep up with the world in paying for it tonight. One if these days I’ll remember that spending the day walking around town is just not ok, pain in my left leg and shoulders is huge tonight.
12/12/12 1:43 am pst
So I thought I’d sleep matter of fact I was pretty damn sure I was almost there. And the the lights went off,your voice faded from my mind and I was awake. So much going on in my mind these days. I’m thinking of pulling the gallery it seems pointless in this WP environment. Just switch everything over to esty and amazon. The blogs good for other things but not selling art. I kinda new it wouldn’t work but I figured I’d give it a try. I’ve had one donation and it wasn’t even from someone who wanted a painting, just a friend who supports the arts. Sometimes I feel like maybe I’m done, painters block, writers block all of it. So many choices to make in life these days. And here I find myself rambling to myself at almost 2 am pain pills I think I need to take something different at night the Vicodin seem to be keeping me up. Anyhow if people still read the ramblings on this page today for most of you already it’s 12/12/12 this won’t happen for another 100 years so enjoy the day.
Much love and as always. Be brave, be bold and thrive in your lives.
12/12/12 4:30 am
I woke with a startle this morning on the couch as usual since I no longer sleep in my bed, to twitchy I tend to wake my neighbor. After 3 hrs of sleep the morning finds me flustered to say the least slow and in pain as my body try’s to fight its way down the hall to find the test of my clothes. Wondering what day it is and what I’m supposed to be doing . PT for 9p-12p got it. After that I’m not really sure, speech therapist is doing to love me today. As I have the executive functions of a dead mouse this morning. To many words spinning in my sleep deprived mind. Hearts a mess, body stiff and shaky, aches of grist mad is coming shatter the noise floating in my head, but I don’t really care, it doesn’t feel like Christmas, an American social spending holiday, bah!!
Don’t get me wrong I’m a man of great faith, I just think at some point in the Americana culture we forgot as a whole society what christmas is about. But I’m not going to rant, it just gives me a focus while my AM meds kick in. America has no culture so who am I kidding why rant about something that doesn’t exist. Anyhow good morning, afternoon and night depending on which side of the rock your on.
12/13/12 4:30 am pst
Well I managed to sleep, at night!! I might just be getting back to a semi normal sleep pattern, granted I only was in dream land for a few hrs, but hey I’ll take it. Found my sleeping couch around 1am lat night so 3 hrs plus a 1 1/2 hr nap yesterday not to bad. Waiting for the PT pain to kick in I had a great session yesterday. Made some forward motion in speech and OT which hasn’t happened in a long time. Today is tricky so far. Standard issues had to wait for pill time before I could post as my hands were shaking to much to type and I wasn’t in the mood to use my voice software, it always feels strange to be up at 4 am sitting on the couch talking to myself. Anyhow I’m starting to ramble. Today with any luck will be about painting. I only have two panels left so I’m a bit shy about starting as no cash to buy new panels. With Christmas around the corner I’ve been banned for spending any money 😦 so again rambling pain level is ok so far 5-6 we shall see what it’s like when the pain pills wear off usually around 10am. To all be well, be brave and thrive.
12/14/12 4:30 am pst
Ya know after 6 hrs of sleep in two days I’m not sure if I feel like a king or a jester 🙂 my PD this morning has me moving like an old man… It makes me laugh, I suppose it shouldn’t but one has to find humor in as many places as possible. Today I’m inspired, 2 frames in the works which normally wouldn’t make me thrilled , but their is a huge difference between making a frame for a deadline and making a finishing frame for a piece(s) that are going to a good home. Today I will pour every once of my skill and passion into the finishing touches on these pieces and that gives me great joy. For me the frame is equally as important as the piece it’s self it’s a source of not ending the piece but bringing its energy back into the piece giving it a finishing flow. Ok I’ve got to get busy, much love to all.
12/14/12 continued 6:32 pst
Pain in my lower back feels like someone about 9 feet tall has ahold of my spine and is trying to rip it out through my back, fun…… Not so much.
It was a good day, I went and got some more frame supplies for the Lost piece which I should have done by tomorrow night which will give me the weekend to make it perfect. As long as the hips and back hold up I should be good. Tremor tonight is slight but constant so a long as I can fin its flow I can move around ok, so far muscle stiffness in my thighs is pretty intense though basically feels like I’ve done 10,000 squats today. Anyhow just finished dinner going to chill for a sec then off the the studio.
I hope the day was kind, despite the horrific tragedy in Connecticut today. Rest those poor souls, makes me so mad, I mean really was that necessary f#%#k!!! Grrrrr.
12/15/12 2:33am pst
In 1 hr and 31 min I will have been awake for 24 hrs. Sleep is a fun beast. I guess I did take a nap today for an hr so any how good night.
12/15/12 4:32 am pst
Good morning it’s time for more cookies and coffee I think maybe…. Or maybe more sleep. One things is for sure it’s pill time!! I’m a shaky bastard this morning lol. Mmm coffee… So good. I’ll be back later from the studio time for meds just wanted to say good morning to the world.
I believe I have found the new super food destined to fuel the world……… Chocolate chip cookies from Costco,
Ok well maybe not the world, but they are super and they are food. Taking a little break from my morning of fine tuning frames and stuff. PD has been a tricky vixen this morning my legs are super stiff and my hand tremors where off the charts for a while, i find it amusing, I kinda have to because I can’t do anything to change it.
As always. I hope the works is kind and gentle to you all, and you to it.
I’d like to pretend that I slept in but I’ve been up since about 4:30 this morning. Yesterday evening was strange. After dinner I had plans but I feel asleep only to wake up at 10p I think. Missed my pills by hours and was in crazy pain. Took 2 of my pain meds at 12 or 1 am then got up today took my PD meds and now hopefully will be back on track. My tremor was so bad this morning I couldn’t post in the journal until now. Even now it’s a bit tricky. But no big deal, I get to play with power tools today mwah hahaha shaky guy with power saw DANGER lol. Anyhow it’s going to be a great day regardless I’m in the studio today so it can’t be bad. Until later much love
12/16 continued 12:14 p pst
Waiting, waiting, waiting Im sleepy z d I hate waiting for stuff to dry, I think that’s why I’ve been enjoying acrylics so much this year. I can add mediums to slow the process or turn up the heater and fans to speed up the drying time. I’m excited to get to the sanding and painting phase, I have a cool idea for this frame and if I’m as neat as I hope to be i’ll have everything done tonight and then shipped out by Monday pm pick up time. Any how much love and healing thoughts until later.
12/17/12 3:30am pst
I’m lost in thought this morning, not sure when I fell asleep last night or what time I crawled into bed, the pain last night was intense and for those of you who read this that have chronic pain sometimes the only escape is sleep. So I escaped, pain pills, couch=goodnight. This morning again lost in thought not depressed, angry or anything to deep just contemplative. The PD has my balance all messed up this morning so walking has been a challenge but my hands or more steady than they’ve been in days, I guess it’s a trade off. Today I have a neuro visit as well as PT/OT. I have to go to my neuro by myself which has me a bit nervous I don’t do well with doctors when solo. My PD kicks into overdrive when I’m nervous or stressed and often makes it really hard for me to communicate effectively. So we’ll see how today goes for now adieu, be well my friends.
Sooooo good morning again for the second time today, after my neuro and pt visit I was wiped out. Decided I would lay down for a short minute, well that turned into a 3.5 hr nap. Which means that there is a really good chance I’ll be up all night. So who knows the night is young. Xo
To be honest I have no idea what day it is right now. It’s though 2:57 am and I find myself in this crush of words once again dialoging my heart and soul to this finger tapping device. Yes my phone. It really should be my girl friend at this point, lol it literally has my life on it, in it how ever one would say. Well I’m up because I’m in pain. It had been many weeks since I’d had a pint and last night I decided my good friend Sir Guinness need to come by, I was a good boy I had 2 pints with a big dinner no driving or horse back riding was done. But I also did not take any pain pills because then it would have gone from a simple pint to a party and well I’m a bit old for that these days and really whom am I going to dance with at home….. Nobody,……!! So yeah here I am legs elevated on the couch hands shaking like a wet dog. Bones trying to rip their way out from my flesh, it’s actually kind of funny when I get like this it kinda sounds like rice crispys when I move, snap, crackle,pop. Hurts a bit though as you may imagine. So…yeah…..until later much love, Benjamin
Today was a great day, I stayed ahead of my meds all day until about 6p and my pain was an easy 6 which for me is good(ish) I finished a piece I’ve been working on all week I made a great dinner had a conversation with a great friend and know I’m going to lay down on my sleeping couch with the laptop and relax.
Much love to all
12/20/12 12:47 pm pst
Amazingly I didn’t post at ohmygosh in the morning, no I actually slept, weird I know woke up at 4a after about 4-5 hrs of sleep. Currently being overwhelmed by a bout of full body fatigue no fun, meds don’t help the only thing to recover from these types of episodes is rest so that’s what I’m going to do. Sleep for about 30 min. G’ night all.
Until later… Be good k???
12/21/12 7:01 pm pst
Well here on the west coast the last place to get to 12p and reach 12/22/12 we are still intact no zombies, angels or aliens. I shipped out the last of the gallery purchased pieces today which is a great feeling, now I just pray they reach there destinations intact.
Pain level tonight is high, spent a few hours keeping up with the normals doing some Christmas shopping and it kicked my ass, my damn left hip can barley support any weight. So no painting only laying down tonight. 😦
Until later much love to all. Be brave have hope and thrive.
12/22/12 5 am
Well I managed to steal about an hour and a half of sleep from the night.. Ha… Take that..! You elusive beast(sleep). Today should be interesting, I’ve got to make another public appearance today lol, except after yesterdays adventures my walking don’t be a graceful as usual ha,ha.. My left hip is barely supporting any weight. Oh well. It will just be all the larger adventure right? Tremor is mild today so far so that’s a good thing. More in a bit my 5am pills are clouding my head something fierce, I’m thinking all the words but the fingers aren’t pushing the buttons. Until later
12/22/12 7:00p pst
One of these days you’d think I’d learn to take it easy… Let’s recap the day so far. I had 1.5 hrs sleep last night I’ve been going as hard and fast I I can since 4a groceries, house cleaning, Christmas shopping with the kids then home, wrap presents, prep and cook dinner, kinda attempt to clean kitchen….breath… And then that leads up to this post and a pain level that I can’t even begin to explain. Let’s just say I can feel every nerve, fiber and bone in my left leg from my hip to my little toe. Both my shoulders feel like a football players shoulder pads have been super glided on and his team is trying to rip them off.hmmmm, maybe I over did it. The funny thing is I can’t even feel the flesh on my foot at all. I can see that I have a foot and I can sure feel everything inside but you could probably chop off my toe and I’d be ok with it lol. Anyhow just so we are all clear I’m not complaining, just chronicling a day.
With the smallest brush of her hand
my pulse quickens as I wait for that fateful day.
That my hands can grace her silken skin.
A whispered word calls my name in the night,
leads me to dreams of curvy hips and liquid lips.
Drinking deep from her fountain of youth.
Satisfying every worldly need a woman may have, as i call out her name with a lovers care.
Breath for breath matched as heart beats become one,
hands tighten in a lovers grip.
Hips and lips and lockets of hair,
pulled back like reigns on a sleigh
Wandering through natures gifts.
Only to find my way back to the beginning go start again…. Temptation…
12/23/12?? I think been up since 2:50a
Their is no dawn this morning for it is still the night.
I sleep in the night I wake in the night
This past few months has really been just one very long lucid day.
Today I chase no demons or feel great angst I just wonder the halls of this home I just of amusement. To shaky to paint to passionate to sleep. I find myself with familiar friends. The cat, a country woman and those whom the days has already started a new. Today I will paint for me. I will hide myself away in the studio and paint a sweet song of my soul in blues and greens and things in between.. It’s almost pill time, funny thing in my life. A man who never used to even take aspirin. It’s always almost pill time these days every 4 hrs on the hr or else, the slow, shaky old man comes out to play and as cute and hunched as he is I really don’t like him much. I’ve been watching some very strange Joan Crawford movie Female on the beach 1955. A strange sub/dom relationship between Joan and Jeff Chandler, I think Joan’s character is going crazy, I’ve missed about 1/2 of it so I really don’t know what’s going on with this film. Any how I seem to have lost my coffee so I’ll be back later…
Much love to all!!
Fatigue is already starting yo kick in this morning which sucks!!!!! My internal tremor is rather strong today which is always a weird feeling, it’s like my bones are attached to a milk shake machine. Any how handed coffee out at the mission this morning and will be making hat/glove gift bags after family breakfast of which I will go hand out down town to everybody that asks me for change of which I never carry. Paper money?? Do they still make that stuff lol 🙂
Any how posts will be lite today as its the eve of holiday. Much love to all.
Be brave, be loved and thrive in your life.
12/24/12 9:00p pst
Was a great day for the soul, funny thing I walk into the mission to hand out the gloves and hats and it’s lunch/dinner time and the one guy I know there is busy talking with someone so I wait,…. He looks up and asks if I Need help and I say yes… You can. I’m looking to donate these gloves -hats I let him know they are all new tags still on the shock on this mans face was priceless. As I’m leaving I hold the door for a group of me coming in for dinner all of which seemed equally surprised,…. Everybody deserves even the smallest act if respect. Ok people time for pain pills and done sleep most likely until 2-3am if I’m lucky.
12/25/12 4:00am pst
Well so Christmas is here once again.
FYI just in case it ever comes up barley wine and Parkinson’s meds don’t mix well headache grrr. Lol so I’m laying on my sleeping couch for those who don’t know that means the giant one up stairs. Watching a Christmas story, because yes it still makes me laugh. And it drives the ms crazy hehe snicker.. Just a think I have to do once a year come on… I’m a good boy 99% of the year, dishes,laundry,cook 6 nights a week gourmets dinners I deserve a little payback lol. Plus Christmas is the one time of the year I’m like a child, I don’t buy things for myself ever really so for me it’s nice to get stuff, and I love to see the looks on the kids faces when they open their things. PD is mild this morning pain level normal 5-6, dyskinesia mellow only moderately wiggly this morning.
Hope the day treats all of you well.
Much love, peace and hope.
12/25/12 9:50am pst
So excited, I write this post from my new iPad woot. It’s An older model but I’m so excited it rocks!!
I use my phone to produce my blog 100% of the time so this iPad will make it so much easier for me to type and stay connected. Yay!!
** moved post to daily rant, seemed more appropriate.**
Well I managed to get about 3 hrs of sleep. Not that they were very good 3 hrs but my eyes were closed and I laid very very still, lol. My hip and shoulder pain never eased yesterday even with my pain pills. My left calf has been flexed for about 36 hrs straight. I have pt-ot-speech today hopefully my team will be able to work out some of my kinks. Anyhow I hope all are well may the world be kind and generous to you all.
12/27/12 7:00 p pst
PT kicked my ass, ugh I felt grand for about 2 hrs afterwards but it’s been 10 days since my last visit and that’s way to long in between sessions. Ran in the pool on the treadmill which was great but my dystonia in my leg has been so harsh that it really didn’t do much. Except tired me out. Lol Good news I no longer have to go to speech therapy.
Apparently we have been able to stabilized or catch up to the shift in executive functions that PD and the meds used to treat it cause. She’s taught me tricks about recall. And visualization. Ot which is my favorite hurt but I needed it to if that makes any sense, my shoulders back and chest get so stiff, imagine having a black hole/ gravity well just below your sternum and that gravity that it uses to pull in all your chest back and arms muscles,bones and tendons. Well that is Parkinson’s disease. So when I go to OT she basically pulls me out of that scrunched place. And we’ll giddy it hurts a lot but less than I feel on my own. And when I keep up on my stretches it helps a great deal. So tonight and tomorrow I’ll be in pain but it will go away.
Any how that’s my day pt/ sleep/dinner/ WP/ more sleep maybe and tomorrow paint!!!! Until later I hope the world has been kind to you all today, be loved.
I wake in the couch in a daze wearing yesterday’s street clothes feet still in slippers. Sleep came to me last night alright more like a bulletin to the back of the head or an assassins knife. I find my 8 am pills still asleep where they shouldn’t be no wonder I feel like shit and have no idea what the fuck is going on. I must have fallen asleep before 8 because that’s when my pill alarm goes off and says take your pills. Ok I will update later I need coffee, pills, and to focus for a bit.
12/30/12?? 4:30am pst
I think I’m not sure good morning/afternoon/evening where you are I think that covers it. I’m pretty sure that somebody is trying to hammer a nail in the back of my head today. Man does my head hurt.
12/31/12 4:30a pst
I’ve been up since 2a but thank goodness my migraine is gone. After an all day battle yesterday with this monster headache at about 6:30p last night I’d made dinner, been a good boy all day did my house Frau duties clean, laundry and such , little ones had been fed it was time to sleep. So from 6:30-2a that’s what I did and for me 5.5 hrs of sleep at once is pretty darn good. Today finds me with my normal PD pains, joints are ratcheting, muscles stiff and unrelenting in their dystonic grip. Pain level back to its normal 5-6. 1 being no pain 10 being pass out take me to the ER. I love the mornings in my house, me the fire and kitty my overgrown rag-doll Oscar who thinks he’s a dog, follows me around like a puppy, it’s really quite comforting to have such a companion. I’m not much for festivities so New Years to me is really just the passing of time we could call it maroon Monday for all I care time is a be relative through my eyes. Of course my grey hairs tell a different story all together but that’s a tale for another time. I do follow suit with the standard well wishing that comes with the holiday but really if rather give a hug on a random Wednesday than mark it with a special name. Again time being relative I think it’s 2013 already in NZ here on the west coast we are the last to change time, late to the party so to speak. Or maybe just the last to let go.
I think today I’m going to re-post stuff for all the new comers to the land if paint and prose. Well that’s all folk, to quote some random echo in my head.
Much love peace and kindness to you all. May light guide your journey and angels keep you safe.
So I distinctly remember writing in my journal this morning but it seems the WP worm hole has gobbled it up. Little concerned about my fatigue level these days. I’ve been having to take a nap pretty much every afternoon. Some of those naps have been last 1-3 hrs today I missed making dinner, thankful ms stepped up and did it. Anyhow I’m not going to try to reproduce the AM post. I’ll get back on track tomorrow.
Much love to all .
1/2/13 3:23a pst
I’ve decided that time is relative and Completely useless I mean really it’s 11:30 am in the UK 1:30pm in Bucharest 9:55pm in some place in Australia I can’t pronounce and it tomorrow in NZ they’ve already forgotten today, wtf. I hate waking up in the middle of the night cold on my sleeping couch with demons running through my head studios to cold to paint, freezes my bones to the core makes my shake like a dog who’s glad your home. I need to write a book, I started one years ago called Death, Dying and divorce, all things I’m familiar with. 90% of my friends are dead 98% of my family is dead I’m a boy stuck in a mans dying body, all of the dreams I had are gone for I haven’t learned how to over come this fucking disease. I’m bitter and tired, alone and lonely, afraid and bored all at the same time. My body hurts like hell today all of my bones creak like broken floor boards. I can’t drink to ease my pains. I obsess like a madman, write like a fool. Play in this WordPress, that’s not true, I like this place, the only problem is I want to have coffee with all of you, I want to look into your eyes and know your real.
I don’t know if I can paint small, so I think mmmmm I’ll paint small this year and what echoes through my head, murals, big giant fucking murals, shit that’s not small at all … Ok enough ramblings. See I warned you all my mind is a Terrible thing to taste.
Until later: my the world guide you in peace bring you safely home let you love and be loved give you smiles when you have none and strength when you need it most.
1/3/13 4:11pm pst
I’ve been up since 2:30a as many of you know already the demons didn’t chase me last night so my psyche was intact today. Had 2 hrs of PT today. Which tore me up, granted I feel better because I can move a bit more smoothly but the pain I have to go through to get here is immense. Imagine a car door that’s rusted shut how one has to wiggle and pry it to open, once open it works fine for a bit but eventually it will re-rust. Well that’s me everyday. So today they oiled my preverbal hinges but the price I pay is great. I did however manage to do one thing for myself I primed a 24×48 panel for tomorrow’s painting and if I’m lucky I will drag my ass down two flights of stairs tonight and texture it so it can dry overnight. Well see. I’m already starting to feel the burn from today’s exercises. I had to test in PT today which means pushing my body to its limits so they can say yep you still have PD, gotta love insurance companies. Any how it’s time for this house Frau to make dinner.
Much love. I hope the day treated you all with love, tenderness and joy.
1/4/13 5:00am pst
Feels so relative to type since I’ve only slept for about 1.5 hrs. I think I feel asleep around 2:30a it’s now 5a But here’s the thing sometimes you just have to roll with it. Again it’s tomorrow in NZ so maybe I slept their whole day away. Hmmm.. Time funny stuff my the youth measures by the next check point and by the grown measured by their youth lol. Mine have gotten so big. Oh time for pills… It’s always time for pills it seems. Anyhow I’m rambling. No sleep tends to do this to me. I’ll post more later.
I’m officially awake slept from 10p-2a woke chatted for a bit then slept another 2 hrs. Symptoms are funny this morning balance is nowhere to be found I rink it’s still sleeping. Hands are surprisingly calm. Pain level is 5-6 which I normal for me I live in a constant state of pain, stiffness and rigidity. The special thing about today is it is mine. I have to sen out some mail but for the most part that is it. The boy and I will go get hair cuts at our barbers
But otherwise it’s time to paint. I’m thankful to be able to move today, the exhaustion that encompassed my night last night was so huge I though it may rob me of my movement today but so far so good. My dyskinesia is strong today but that’s ok as long a I’m not walking around a bunch. I have a date with Dalis baby today I think I just need some quiet time in the studio to collect my thoughts. May the world be kind and generous to you all today, bring you hope, peace and love to your hearts.
Today is going as expected I slept last night from 10-midnight then from 2-5:30a I’ve been able to stay ahead of my pills until about 25 min ago. Usually about this time of day the fatigue hits which it has. The neuropathic pain starts first and I can feel my muscles and tendons start to tighten, then on a cellular level it hits every inch of my skin cries out for rest. So before my pain gets to huge I’m going to take a nap. May love and piece follow you today.
1/7/13 2:32a pst
Ok I’m up not sure if I’ll stay up, but I’m here. Kitty decided I need love so he came to my sleeping couch to make sure I was fine… Thank you kitty 😐 it’s oddly nice outside right now, there’s a breeze and you can hear the neighborhood wind chimes. It’s chilly also which I really enjoy, with winter comes a whole new set of natures textures to observe. And well I have a thing for textural things, even with food. I like crunchy, smooth, spicy, creamy cool. Ok food I like to cook, not so much into the eating part but I love to cook. What seems another life time ago I bar tended at a very upscale jazz bar, Mel Brown, Leroy Vinegar were amongst the musicians that played often. Plus any touring big boys would stop it a do sets unexpectedly. That’s how I met Harry Connick Jr. Whole bunch of celebs would come and dine as well probably because it was really dark and you really could just blend into the darkness. Cool jazz, amazing food and a whole lot of anonymity. I didn’t care who they were as long as they weren’t jack asses and tipped well they could sit at my bar and I’d let my empathic talents go into action, writers, painters, CEO’s professional athletes, they were all just people with stories to tell and it was my job to listen so I did. Actually got voted in the top 3 bartenders in PDX that year. I never did see the article in the paper just had one of the local guys tell me. I thought huh, no wonder were so fuckin busy all the time. The chefs used to come and unwind at the bar after they were done tell me about the line that night, cook me what ever I wanted for dinner, literally whatever I wanted because I controlled the booze and they new it. See this was the type of place that after the restaurant closed the bar keep became the big wig. Not that I cared, it just meant that if shit hit the fan I had to clean it up. Anyhow I treated the prep team like kings, see I knew who had the real power, chef and sous may have the title but it was the little guys that did all the work so I would keep the coffee flowing for those guys, maybe sneak a hot toddy back on a birthday that was forced to work. So these guys taught me everything, knife work, sauce, techniques for desserts you name it. So ya I like to cook. I guess I’ve always had an affinity for the night I like the bridge time between when the crazies go to bed and the normals start to stir. I’ve always like to observer stories unfold, one of the day/night that didn’t end on time and the other of one that just started. As I write this I think what a gift that time of my life was. I was painting and showing, bar tending and doing far to much drunken spoken word poetry. I mean picture me at 3am white vintage dress shirt sleeves rolled up to the elbow, black merino wool slacks and classic Allen Edmonds wingtip shoes. Hair slicked back like young Elvis or Frank. Tie loose around the neck. Up on stage reading out loud the same kind of stuff I post here. Yep good ole days. Anyhow thanks for letting me ramble about another life another time gone by.
I’ve been asleep since 9p I think the day has been a bit of a wash, between painting and nap I loose track of the date pretty easily. I know that by the time officially wake it will be Tuesday but what ever. It’s strange how I come to this place for solace, soft electric glow of gravatar faces, voiceless, except in black and white type. It’s strange how technology changes things, it’s nice in the house right now. The houses is absolutely quiet besides the snap,crackle,pop of my joints is I shuffle about perfect stillness.
To be continued:
Well I slept kinda grabbed a few hrs early last night then a couple more between 2:20a-4:00a my tremor and dyskinesia are pretty strong this morning so this message will be short since I’m hitting back space as many times as I’m typing words. My mind keeps wandering zoning me out lack of quality sleep and AM pills make for a spacey dude. No words of wisdom yet just plain and simple human truth. What have you done today for your fellow humans, held a door, waved someone into traffic, bought a cup of coffee for a stranger, given blood. Smiled at a stranger come in people it’s not that tough step outside of yourself turn around and look at you. Are you good, indifferent, or mean today. Why?
Find hope, peace, love and give it to a stranger.
Once again I find myself in the middle of the night awake shoulders and hips aching, crunchy bones. Pain level 7. Head dizzy from to many pills. I slept from 8p-1:30a which is good 5.5 hrs is sleep. I think I’m catching the plague that’s been going around, cough is starting a bit throat is scratchy, eyes itchy. Funny thing is regardless of how I feel it’s just another day. My and shake to much to write tonight so I’ll update later, much love,peace and light to all.
Kitty and I are up after a few hours if sleep. Just couldn’t get where I needed to be last night 9:30p-2:3a seems to be the norm and no naps yesterday. My hips are very sore this morning sharp pain from hip to tip I like to say (toe) is the other part btw. All of my joints just keep getting tighter and tighter makes me a bit nervous at times. Because PT only helps a bit keeps me from stopping completely….long pause…. My brain is freezing this morning see its in between meds when I wake at this hr. been since 8pm for meds and the next don’t come till 5. Anyhow blah blah I have PT today 11-1 ROM test for the good ole insurance company. Talk to you later.
Be brave, be bold and thrive in your life.
1/11/13 3a pst
After a very tough day yesterday I managed to sleep! Almost 6 hrs that’s great by my standards. This morning is beautiful as I wander these halls. The sky is clear and one can see stars for miles. When I was young my aunt and I used to look at the stars all the time so I’ve learned the constellation pretty well. My body this morning is broken and old before its time 2 years ago I was 40 barrel chested Irish man felt strong at every turn this morning if feel like a broken old man. My hands shake, my steps are shallow, every joint in my body is screaming with pain. I try to stay positive but some times it hard with so much pain and the looming fact that incurable is in the description of my disease. Some morning the fear grips me by the base of my soul and shakes my very foundation of belief. Why dear god give me this life and put me through so much pain, you’ve taken my friends and family and out them to their grave. Given me a partner that is so afraid of my disease that she fails to even see it sometimes. My ribs on my left side have been having dystonic spams all night it literally feels like they are being pulled apart, grrrr. I’m sorry I shouldn’t whine about it there’s no changing it. I will do what I need to do, I will stretch, meditate, pray and thank the powers that be for every breath I take in this shell that I have. I think this morning I’m just scared. Scared of the fact that this disease will end me. It will rob me of my body and mind little by little and there’s nothing anybody can do to help except try to make me comfortable. May the stars guide you on your journey as they have me and my light and love fill your being all the days you are here.
Well, I’m amazed. I slept almost at a regular time from 8p-10p then from 1a-4a that’s 5 hrs granted not all at one time but at least I haven’t been up since 2 that’s a good thing. I awoke this morning with my normal shakes and quakes, the pain was minimal we’ll call it a 5 unfortunate it is starting to increase . Thankful my hear and soul have found their rightful place today and my heart sings dispute my pain and tremor. I intend go paint today. To all much love, peace and hope. And if you have none then you may have mine.
1/12/13 5:50 pm pst
The day was good, but there’s always a catch, often when I have a good day it means a bad night is on its way. I spend the day moving semi normal trying to keep pace with the humans and well as the evening settles in so does the pain my hips are on fire tonight it feels as though my bones are being pulled from their sockets, ouch is all I can say. Well it’s pain pill rest time I’m sure I’ll to to you all another time.
I slept for 9:30p till 1:30 am not sure if I’ll go back to sleep or if I’ll wander these halls. It’s cold again and my fire went out so it might’ve best to cuddle under my blankets find a show to watch and just relax and see if sleep won’t find me again.
1/15/13 1:18 am I think it official I have zero rhyme or reason to my sleeping patterns at all anymore.i sleep when I’m tired or in today’s case when I’m fatigued beyond anything if you note the time stamps on the two most recent posts in this journal you’ll note I’ve been up for one day, but not really. I slept for a few hrs this afternoon then again from 9p till around 11:00p and I’ll most likely sleep again for a few hrs before I have to wake and take the ms work and kids to school. I’m not even really sure of the name of the day today Tuesday I think? I still have two pieces waiting patiently in the studio for their first layers of paint. I’ll be shipping two other pieces out this week. As well. Still waiting to hear back from the insurance company on whether or not they will put me on FT disability and what that’s going to look like, it scares the hell out of me to be honest, it’s a fine line between to broken to work and not broken enough to get disability. And my online job won’t start paying well until I can get out there and make things happen. I’ve been stock piling PD meds just in case things fall apart honestly I’m not sure what I would do, my leg strength tremor and pain are out of control. I will just continue to have faith that I am on the right path. More to come later once the sun joins us.
Ok so now it’s officially Tuesday on my planet I’ve slept kinda and I’m up taking meds drinking coffee, hands shaky pain level 6 joints going snap crackle pop it must be a new day. 🙂
With every step in life we take we grow closer to the truth of our life’s work but only if we see and act with an open heart, soul and mind.
Hi, I’m sleepy… Feel asleep after dinner had to charge my phone so I didn’t hear my damn pill reminder.. Woke at 2 in crazy amounts of pain as my muscles were trying to crush inward. Fck. I have do much to do today not good. I’ll update as I can but currently my wrists, elbows and shoulders are licking up so writing this post is becoming more and more difficult. To all Be brave, be bold and thrive in your life.
Nothing like waking up in a strange hotel bed after a night of family and fun.
Pill time then more sleep.
10a the only problem with not being at home is my comfort level. I love and miss my brothers like crazy when I’m not with them but I hate the break in routine, makes my symptoms so much worse than normal, which of course make them worry so I have to reassure that I’m fine just shaky and stiff but all is good. Pain level is huge today but I won’t be letting on about that.
Well that was a great weekend. PD demons stayed at bay for the most part. Hands were pretty shaky a couple of times but my overall pain stayed low until today, I think I probably willed it at bay for the most part. Neuropathic issues on my left side were very apparent but like I tell my doctors it doesn’t hurt to be numb. (They never think that’s very funny) I on the other hand find it hilarious. Plus it makes for great party tricks 😉 picking up really hot or cold things. Anyhow I’m home cooking dinner so obviously things haven’t changed that much. I didn’t get arrested nor did I end up in Mexico or Canada (which has happened before)
I hope the world was kind to you all.
Much love and light.
1/23/13?? I think 4:30am pst
I find myself one again in the mornings embrace back to my shakes and quakes. Bones stiff and sore. The chill of the night has found my insides and settled hard and fast. My home although full of comfort is far from the penthouse at the benson hotel. Lol. Even with the strongest of will power can I keep this beast at bay for just a day or two. My left side is a mess, my OT Hal is going to have to pry my left shoulder down from its current position next to my ear, she’s gonna be not happy with me. But PT this week is hydro thank goodness. I’m told the name of today is Tuesday an is that’s the case then I have two days until OT. Which means I have two days to paint.
Strange this about the WP community I find that when I’m away from you I missed you. It’s seems we are not just ones and zeros ready to just quickly fall off into the night.
1/23/13 again 6:00am
The number and name of these days quickly lose their meaning to me unless someone else has deemed them important for me to remember. The sun rises and sets day in day out. I paint I write,eat and sometimes sleep. Maybe today I will fight demons or birth an angel. Or maybe I will fight my demons of the day as today I find my left side is failing me. Pain from my neck to my toes down my left side, loss of muscle control is making it hard to move my arm, grip and such. Had a little talk with my hand earlier, went something like this; ok time to use the turn signal…. Ok anytime….. Here comes the turn you fucker, come on you can do it…. 1,2,3 and go …. Yay good job stupid fuck. Yeah limpy did it now if I can just get him to grip things today I’ll be in good shape. And if I can keep him from talking to his friend mr.right hand it may just be a productive day. Suddenly all those jokes about no worries I have two don’t seem so funny. Lol . But really what can ya do. Some times life gives you lemon and what do you do…… Throw them back as fast as you fucking can and run, run fast and hard or in my case hobble quickly whilst shaking your limp dragging arm lol. Oh well I’ll paint with my toes if I must, and when the day come I’ll roll my body in paint and twitch around the canvas until something magical happens.
**Never give up***
**Never stop fighting***
**Never stop believing in your self***
Always give all of your love and kindness to others, someone somewhere whether you know it or not will be sending you more and more than likely it will be me.
1/25/13 5 am pst
I made it through the night well my night. Slept from 1:30a-4:30a sometimes it feels like my life has turned into a horse race from here I take mrs to work come back make lunch for boo and the to school, prior I need to shower get stressed for jury duty so. School jury duty,PT home, LTD phone calls and paperwork. Mean while manage my PD keep stress low try not to get fatigued. Life with pd has become very stressful. Lack of faith from my family and myself in my ability to provide for my house. Which for the first time since I was 19, now 42 has become an issue. When I struggle just to buy panels to paint on I know things are getting tight. I sit here this morning thinking ok what old paintings can I paint over? Scrapping up an extra 20$ to buy supplies or milk.. Hmm. Plus the stress it causes the house mrs is stressed beyond her limits working 40 hrs a week was never in her plan especially after not working for so many years. I provided for everything, that’s how I was raised. White knight, sing,dance,write,paint,sing,fight,shoot, work and do it better than 95% everybody else. And then came PD and disability truly physically and emotionally the largest battle of my life, it’s harder than war….. More to come I have lots on my mind, but there putting the horses in the stalls it’s time to race..
May love and light guide your day. May patients and kindness come your way.
1/26/13 3:a pst
I cheated I looked at my calendar before I started this days entry otherwise it would have started something like its dark and raining, kitty and I are wandering around looking for something to do without waking everyone up on this fine day. So here we are…I have a med hangover this morning, took pain pills last night as even though my nap fixed my fatigue once I started painting last night my hip started throbbing in a bad way. My hands are shaky and moving in unpredictable ways so far this morning. My left shoulder is at a pain level of 5-6 so normal but the pain is sharp today. Hips are fine but I’m laying on the couch so I’m good for now. I was just joined by my son who apparently had a bad dream so I’ll continue this later. Much love and light to all.
Nothing exciting to report still have PD tremors strong this morning pain is tolerable, slept like crap, but that’s nothing new. Did however get more panels yesterday. So today will be spent being a carpenter. Cutting the very large panels down to the sizes I’d like, prepping many of them so they are ready when I need I might even make some shadow boxes to paint on today as well we shall see how the energy level goes. I always stray out with such grand plans. See my mind is not used to the idea that my body has PD so I have these ideas of what I can do then reality steps in and reminds me if my bodies limitations, kinda sucks but that’s the way it goes.
My day has been funny today my mind was so full this morning I couldn’t type write talk fast enough to get the thoughts out it was like a train wreck in my head except the cars just kept coming. So I painted for a bit, that calmed the demons in my mind but let loose the one that live in my body. After the first few layers of paint on each piece my hips said no more. I was late on my pills today a couple of times but not by much, mostly because I was so easily distracted, kinda like those dogs in the movie up and very time they see a squirrel they freak out well that was me every 5 minutes I had a squirrel moment and lost track of what I was doing Jensen the last pills. Oh well I’m babbling pain in hips is a sold 7-8 hurts tons and the really cool part is since it’s nerve entrapment it’s almost impossible to get rid of. The Vicodin seem to make my head care less about the pain but my body is still really sensitive to it. So no sitting for more than a 1/2 hr standing in one place no arms in one position for longer than 10 – 15 mins fun lol not really. Ok im done for the day it’s dark which means…. That well it’s dark… Xoxoxo
8pm I’m broken my hands have been shaking all day. I’ve been up since 1a yesterday and all my major joints have been ratcheting all day, I don’t expect anyone to know or understand what that means, but it hurts it’s like trying to turn a handle or gear that keep slipping. Dystonic cramping in both my feet and thighs today has been intense. Imagine if someone was trying to bend your toes back so they folded on top of your foot, ouch right? Well that’s what the muscles in my feet are trying to do to my toes. Needless to say I’m in a ton if pain 7-8 even whilst being on almost 20 mg of Vicodin. Anyhow enough of my whining. For most if our planet it’s tomorrow already so I hope everyone has a wonderful tomorrow, I wish you grace in life and peace of mind,body and spirit.
It’s such a beautiful morning it’s so quiet, no birds or bees not a bat in the morning sky. My body has a calm about it I haven’t felt in years::: cherish the small gifts:::: as I stand here out side on the upper deck drinking my coffee I’m in awe of these few precious moments, I’m not going to cloud them with words or want. I’m just going to be.
May love and peace fill your hearts as they do mine at this very second.
I find myself here once again at 1:30 am after maybe 3 hrs of sleep no fun , not feeling creative, just tired.
2/3/13 see how my sleep screws up my schedule I used to first thing in the morning wake and write in my journal now I sleep for 2 hrs here 2 hrs there and have very little concept of what true day it is, especially is I carry on a late night conversation with a person in another time zone, being empathic I fully engage that person I’m with them in every sense I can be so I’m in their time which of course is not good for my timeline. But today is Sunday 2/3/13 7:a pst my pain level is a solid 6 my clarity of mind is good kinda my soul and heart feel strong. I am have a bit more dyskinesia than I would like from the sinemet but it’s better to wiggle and not move at all or move so slowly that it gets in the way of life’s pace. Anyhow I have been neglectful in my reading of the blogs so on this fine morning I will be reading others.
Much love today for all
02-03-2013 5:15p pst
I find myself in a strange place this evening after spending the morning painting and enjoying the day.
Could be the tremors have eaten my confindence or the pain that ive been ignoring all day has smashed through my blocks and crushed my will. Could be the 26 pills a day that I take just so i can live in constant shaky pain (which is better than the other option) btw have not settled well in my gut. Could be im a stranger in my own house today. Whilst the girls play BorderLands with the boys (i cant play video games anymore) i wonder around looking for something to do. My heart just feels empty, I have no real physical conecctions anymore so when the lonly comes lurking it pretty much sucks. when all you want to do is curl up into a ball and cry and be held but you have nobody to do so with its a drag. especially since Im married, right lol. what ever $%#%$#@ 🙂 ok ive bitched and whined enough to the electric glow of my laptop.
2/4/13 4:a pst
I’ve been up since 1:30 the pains that fill my body fill my mind today. A lack of connection to this human form my borrowed bones. The neuropathy has a bit to do with that lack of connection, I mean how can you feel connected when you can’t feel. 3/4 of my body now has started to go senseless I can feel the pressure but not the sensation the hot or cold although my sense of taste is coming back with full force just in time for my new diet, which is making me crazy I feel like a fucking squirrel. A Japanese squirrel. Nuts, seaweed, kale, yogurt, rice milk and veggies. Oh the carnivore is going crazy, it makes me want to do nothing but, fuck, drink,eat steak and smoke cigars. Lol. I think the latter is just me being me, but still none of which I can do. It’s hard some times to live in this shell numb on the outside and wracked with pain on the inside its kind of like life’s bad joke. Lets give this man who’s lived with driving passions all his life this challenge and see what he does with it. Well fuck you universe this sucks. So there I’ve said it I’m angry. I’m sad I’m lost. I’m scared. I’m everything I fear most. The personification of my childhood. Freud would be proud. Except I DON’T want to sleep with my mother that’s gross and Freud was a sick sick man. It’s weird that psychology is based on the philosophy of a twisted dude. Today’s agenda: pretend everything’s great take the kids to school, do some laundry so I can have clean gear for PT at 9 pst come home be all stretched out for a couple of hours thankful for human contact, paint if I have the strength, my life bores me. But what do you do at 42, go on some grand adventure bit me I’ve got bills to pay and mouths to feed.
And when push comes to shove and I’m stripped of everything I have my honor and my selflessness I just hope and pray that god has a corner for me to sit in when my name gets called. I’ll always give up everything for those I made promises to my son, I promised him as I cut his cord I would be here to shelter,love and guide as long as my bones could move. I just came in from outside I know I digress but it’s funny, well to me it’s funny, I’m like why can’t I move my feet, why is my left hand frozen, oh yeah it’s pill time. Oh yeah it’s like 29 deg out side that’s like -1c
I touch my fingers to my neck one of the only places left that has good sensation and my hands are ice cold I mean like ice cube cold lol. My toes are tingling I think the blood must be going back into them. Anyhow I’ve babbled enough to this glowing thing in front of me if you read this I’m sorry, but you came here looking to see in the dark places of my soul so that’s what you get, me, the uncut, non poetic eccentric ramblings of a lost and lonely dying man. Did you know that the longest living male Prewitt connected to my blood was my dad and he died at 60, so I guess I’m in my golden years. His dad died at 48 which means I might have another 10 years if I’m lucky. G-Pa whom I never knew obviously was a player, more unhealthy than I and my dad was a health nut, ultra marathon runner, black belt ass kicker in perfect health and he dropped dead instantly if a heart attack at 60, so that’s why I say I’m fucked with 10 years at best. Anyhow go in peace young padawan the force is strong in you. Live your life to its fullest, be bold, be strong and thrive in the life you have because trust me it’s not here for long so go enjoy it. Don’t chase your dreams live them!!!!
2/6/13 7a pst
It’s been a couple of days since my last entry as most of you know it’s been a really rough couple of days. I try to not get negative but some times the pain and fear of this disease gets the best of me. I struggle daily to do normal things, get dressed, walk, tying my shoes isn’t even an option anymore. I realize a lot of you only see pretty pictures and maybe the rankings of a madman but in my heart and soul I’m just a bit trying to live up to what it means to be man. A man trapped in a body that betrays him every second of everyday. I don’t expect any if you to understand, that’s why I write this here instead if posting something like this. The words I write may sound distressed and they are but mostly they are my way expressing my fears of what is happening right in front of my eyes. You have to remember 2 yrs ago and could lift my own body weight above my head with ease 195 btw. Do a leaping round house kick well above my head 6ft and shoot a rifle and hit a moving 2in target at over 600 yards away. And now I can barely lift 10# with my left arm can’t barely reach my knees because of the stiffness and my hands shake constantly. I ran a multi million dollar retail business and have been in the top 5% of every company I’ve run for the past 25 yrs. And know I have to ask what day it’s all day long, so of ever I sound frustrated in my small planet now you know why.
Any how I had to put this post on pause while I took thing #2 to school and have completely lost focus of what I was even trying to express… See my frustration love at work yay….
Be bold, be brave and thrive in your life.
Long day 2 hrs of sleep, blood level on one of meds dropped to low and had caused major issues. But all is fixed. I’ve had dinner and now I’m sleeping.
2/09/13 2:49 A pst
Sleep has come and gone for me today. I sit here staring at the soft electric glow I’ve come to know as one of my few sanctuaries. So many things have changed in such a short period of time I’m not sure I’ve even reached a place I can effectively ingest their impact on my life. Most of my long range vision as been so hampered by the pd and the meds that I find my self in reactionary positions, which is really strange for me as I’m a natural planner. Trained strategist and tactician.loosing my body to pd is a unique experience from an out of body stand point. To watch this shell change , twist and get pulled in every direction by my own muscles and tendons. Or like the other day I was putting creamer in my coffee and my hand was shaking like normal, one a good day you learn the rhythm of the day and try to move within its frequency otherwise I end up fighting it, so here’s the spoon, creamer and I flowing in tune the the big wave comes and flings creamer everywhere. Or the crumbling of my mind which is the most troubling thing ever. I used to be razor sharp. Now not so much. I’m mr note pad. I map out my days every day because If I don’t seriously nothing gets done, I’ll be like a kitty in a field of butterfly jumping back and forth distracted by everything even as I write this in my mind I’m bouncing scattered so instead of rambling anymore. I’m going to be done and make some coffee, it’s now 3:10 am early or late enough I should say as to where I don’t feel guilty for making coffee. Much love to all. More later once I get my head back.
2/10/13 4:am pst
Happy New Years to my Chinese brothers and sisters.
I’ve been up since 3am contemplating my life as an artist,human,father and human. It’s not a melancholy morning just a bit reflective of things, wants and dreams related to above topics. My pain level so far this morning is highly tolerable, it’s the first time in a week I’ve been able to save that, some times a have a very casual a attitude about my medications for the PD which is not good, see in my brain I’m still used to being that indestructible super hero guy of my 20’s and 30’s. A good friend of mine reminded me the other day she said Benjamin you need to take this medicine very seriously this is your life.
And she’s right. It’s funny this past week with my serotonin levels all screwed up from my med meltdown. I haven’t been very driven to paint, I’m not sure if its because of the pain? So it’s been physically hard or the brain chemistry change? I don’t know. Thankfully I’m finding balance once again and become focused. I think thought I need a trip to the museum. I’m not sure if its just me, I’m sure not but as a painter I like to get as close as I can so I can see the techniques used. When I was a student up in Portland I used to bring my sketch book to the museum and sit for hours taking notes on styles and techniques used my the “masters”
It’s been a strange week, pretty sure it’s Tuesday so it’s not far into it. I guess I’m in a good place, I can’t tell if I’m being complacent or accepting with my Parkinson’s I’ve been in pain all day but not bad kinda normal 5-6 spikes at 7-8 my right hips pretty sore tonight mostly because my left leg sucks today. Super bad leg strength which is sill because I was tested on Monday and did pretty good. So idk what up.big wave o sleep is coming Ropinerol has been sneaking up on me, I’ll go from totally awake to super tired.
2/15/13 1:00 A pst
The sky is perfectly clear right now it’s cool but not cold maybe 39 deg and my body is at relative peace with my mind. This is the second time I’ve been up tonight the first was around 10p I seem to be sleeping in 2-3 hr block. Which for most people I suppose would be an issue but after months of fighting the insomnia I decided just to accept it. I don’t have to work anymore, matter of a fact I guess today is a bit special. I just realized today is the first day of the rest of my life. I am officially done with my last job. Today marks the end of my 120 day short term leave and the beginning of my long term disability. Yay. Retired at 42. Officially can use the title professional artist. Ok hands are starting to cramp so no more typing.
May you find peace in your heart and love in your soul.
So I just watched the Wallflower movie, and ya know how you feel when you hear that perfect song at the perfect time. Or the light hits what your looking at with the perfect angle. Well that damn movie did that for me, sounds stupid right. I’m probably supposed to be more macho or educated to fall for a sappy formatted “life” story but ya know. When it plays out like its torn from my own life I can help but feel effected. It blew my mind the similarities all the way down to the music. Anyhow life’s been a slow moving train wreck lately, with gryph’s issues and things around the house and my diet, PD symptoms changing the whole none yards. I used to without fail write in this journal daily sometimes multiple times a day. But it seems from the second k wake until I can’t
stand taking that I connected to
Benjamin xx bold
Of course I over slept, right I was up until 3 am but who wins the wooden nickel? Me I took my pills late/early this morning before I feel asleep and only feel 1/2 way crappy. It’ll probably mess my whole schedule up today but it’s better than what happened yesterday I was a wreck until 3-4pm. Today my head is just spinning with thought but that’s normal for me I have always thought way faster than my conscious mind could ver handle. I guess that’s what made me good at business. Know it’s what screws me up because the PD and the meds cause this information highway back up in my brain that makes it hard to extract the info causing a huge executive function breakdown anyhow more coffee morning post and paper work I have a meeting tomorrow at 11a until later the shaky painter signing off.
Make to you yours, love openly, hug freely and cherish each moment
It’s been a rough start to the day. Took my pills on time so that’s ok just my normal dyskinesia which isn’t any fun at all but it’s familiar at this point so it’s not so scary. Tremor has been consistent all day making it hard to type and that’s been at bit tricky since I’ve been doing online crap all morning. 39 minutes until my 11am meeting. Kinda nervous, but I think I’m prepared. The bigs issue today is the pain, my legs and shoulders are in bad shape. The muscles inside of my hip sockets have this internal dystonia that entraps the sciatic nerve which causes a great deal of pain down both legs. And then my shoulda keep trying to roll forward towards my sternum, that hurts tons. Anyhow all in a day. After my meeting I’ll go to the studio and disappear into my work. Ok much love to all
As the day begins I find myself in an oln familiar place. lost in thought between the lack of sleep ive been getting and the pain i experience each morning as the night still hold the dawn at bay. I tryied to start the sleeping process at 9 pm last night, caught 2 hr then woke till 1:30 am or so the back to sleep until 2:30 ish, only to wake in a starle as I was not breathing but choking on my own throat. PD can some times cause the muscles in the mouth and throat not to work correctly and the fact that I take vicodin for pain at night increases the risk of sleep apnea, so I woke choking in a panick for those few split seconds, thankfully one thing Ive learned from years of sleep anywhere training is self awarness I am very aware of my body, so I woke assesed the situation turned on my side relaxed and my throat opened, I took a breath and decided that maybe it was just time to be done chasing the sandman for the night. Today I have PT and OT from 11a -1pm which is going to be both great and really tough. its 10 days since my last visit which is really not good my body has been sccreaming since monday knowing it needed extra attention. So we’ll see how it goes today. Ok general assesmemt of the day, Pain: 7 tremor:6 Dyskinesia:8 muscle weakness:7
I hope the world is kind and generous with you all on this fine day.
Please make the best of it.
You ever have one of those days that’s going along just fine then something happens that just pisses you off? I’m not sure if its my meds making me over sensitive or if I’m just plain bothered. It’s no secret that my home life is well different than most, and if you don’t know I’m not going to go into it here, sorry it’s a long and fucked up sad story. I guess I’m feeling under appreciated, I mean I don’t expect ppl to understand what it’s like to have PD because no matter how well I explain it
It’s just words designed to trigger an emotional responds that might in some small way mimic how I might feel, for instance what does your tremor feel like?well take a hand held massager that vibrates or some random sex toy turn it on high and try to write your name…K.. Done… Got it. Well now put your hand under cold water for about 10 min… Done? Feel how stiff and slow your fingers are moving and how much your fucking hand hurts ? K know pick up that vibrating thing again and try to write your name…..got it… Now make that your entire body and have it be like that every second of everyday for the rest of your life….. And that’s just and only how these small words scratch the surface of what it’s like… Ok now back to the story now that you know what my body feels like all the time. So I cleaned the house today, all 3 stories of the fucking thing, oh and while I was doing that I cleaned the kitchen paid the bills, did dishes and well 6-7 loads of laundry, did I mention that the utility room is one the bottom floor… Stairs yeah love’m NOT. And that was this morning, now that I’ve sent may body into full panic mood pain level 8-9 pretty sure my hip bones are going to come shooting out if my legs any second it’s me time, since I feel so fucking great. I painted aahhh sweet forgetfulness lose myself in the deep calming blue. Oh but wait there’s a txt my buddy needs some help, ok no big deal newly not diagnosed with some horrid makes ya twitch like a freakin electrocuted cat disease ( I count my blessings) I go pick dude up, give gift of feather weight and carved cane, it’s beautiful btw. Well kinda, coffee hang out alls good. Oh time to go ms needs a ride home ok back to the big beautifully cleaned house, thinking maybe just maybe I’ll get an atta boy. Well I got crickets m’f’n crickets so yes I’m a little pissed off. And ladies with husbands you may appreciate this I folded the clothes the right way! So fuck it, I’m tired of treating everybody like kings and queens and being treated like a pauper. Just needed to bitch and since its my site I can do just that, no I will not make this a post it will live in my journal and the 4 out of the 502 ppl that read my journal can appreciate how I feel right now 5:32 pm pst 2/22/13. Ok I’m done.
Yes at one point I was an in your face ass kicking rock a billy boy. Suit wearing tattoo’d swing dancing fool and loved every minute of it.
Benjamin. I already feel better, but that might just be the Vicodin. 😛
I can’t believe it’s been 6 days since I wrote in my journal that’s very unlike me especially I with everything that been going the ought my head these days. First it’s Thursday 440 am I’ve been asleep since midnight so for me that pretty good sleep 4.5 hrs not bad my hands are making it pretty hard to type and I’m slowly remembering why my journal has been blank for 6 days my tremor has been really bad in the mornings especially for the past while.
My pain level this morning is fairly acute at a steady 7. I’ve been pulled in what feels like a million directions lately with insurance stuff and doctors stuff, trying to write today is another very scary day it is the last day of my health insurance. And for a guy with a chronic illness this is a very scary day. Granted it was planned for I have enough pills to make it through until the the 30 day waiting period starts but I’ve had insurance since I was 16 and started working its just one I those things my dad said was always better to have so I did. Ok I will update this via laptop hand way to shaky to type with phone. B
6:40 AM same day. Today has gone from stoic and contemplative to down right shitty. Not only do I have a ton of stuff on my mind, but now I have to spend the morning and money to have my headlights changed. Im just frustrated. all kinds of private stuff going on that Im not yet comfortable sharing at this point. I guess Im just getting tired of lifes little challenges i mean isnt it enough I go from healthy active to on LTD in under two years, just f’n tired of it. I ask for so very little in my life. paint, coffee and Im fine I give all of my funds to the house, give all my time taking care of the house, which happens to break me everytime I do and it just all feels for nothing, im tired of having a really fucking nice bed and sleeping on the couch, im tired of so much shit right now!!! going to doctors appointments solo and feeling guilty that very soon I wont be able to drive. Im plain fucking tired of feeling unsupported, I apologise for anyone reading this I know many of you support me, but ya know its pretty damn hard to do this by my self. much love enough negative crap for today. happy end o the month.
3/3/13 4:55 am
With shakes and quakes I greet the day, with pill and paint I try to keep these demons away, frozen fingers make it hard to say.
The things I think come as they may.
I woke this morning not being able to lift my left arm. So I sat and waited you’d my right to position the left in a natural looking way. And waited asked politely for my fingers to wake up…. And waited. Funny thing as I hunt and peck the entry out my right hand has no real feeling its like a stone hand as I type to a watch and make sure the letters are correct as they come to re screen all the while listening to the tap tap of the stone thumb touching the keys. I think my cold may have something to do with my frozen muscles couldn’t extend my right arm this morning which is a new thing, but it seems to have relaxed a bit. Not that I really care I’ll paint nose to nose this the damn canvas if I have to as long as I can paint. Today, I don’t think I have any “must do’s” beside heal. I’m sure Ms. May have other plans but I’m going to go hide in the studio anyhow. Next week no PT, 😦 no real insurance, well kinda it’s going to be 485 usd a month and that’s just to have it, not to mention the co pays, and since everybody I see is a specialist it gets real expensive really fast. I did finally get ms to admitt why she treats me like shit. She feels she’s been put into the position of “bread winner” even though in permanent disability I still make twice as much as she, lol. She also admitted she doesn’t want to feel like she’s responsible for providing insurance for the family. I could say a lot about all this but I’m not going to. Matter of a fact she’s even taken her distain for the situation to a new level and started looking for a new job. Again I could say a lot of things about this but ya know its not going to change how she feels, she comes from a situation where every compliment she received came with a criticism. Ok enough of this, talking. It is what it is. When the time comes I have an entire floor of the house at my disposal which is more than most have, so I’ll count my blessing give thanks and be penitent. Today I can breath, walk, talk and see and hear, I’m thankful for my life. For what I’ve had, have and will have. To anyone who reads this always remember everything we “have” everything! Can be taken from us in one way or another so count your blessings while you can still tell what they are, live life to its fullest while you can.
Tuesday 3/5/13 430am
This is the second time I’ve woken today I slept from 9p-12:30 then from 3a -4a the first time I rose I woke on my back scrunched in a fetal position very strange way to wake actually. The second just moments ago from a strange dream someone was squeezing me super tightly and shaking me, only I woke to find it was me. My cold has moved to my chest and it seems it is exaggerating my pd symptoms or interfering with the medicines ability to do its job left a message with my neuro but have not heard back yet. Today after my morning errands I will retreat my mind and body to the studio and work on spring in in hopes for its early arrival. Much love to all.
3/6/13 still 10:38
Im well past the point if sleep tonight I was hoping that my lack of pain pills all day would make me tired enough to crash tonight. So at 7:30 half hr before it was time I took my strong PD meds and a pain pill and that usually knocks me out. Well obviously that didn’t work. I think I have a lot on my mind tonight. Paintings, writing, life in general. I hate having cold by the way. So for now that’s it. Pain level moderate 6
3/8/13 Friday 7:30am pst
Pain Lvl 7 fatigue 8 tremor 6
Today, I’m not sure how I feel about today yet. I am looking forward to painting today I’m going to take my little man to school here in a sec then start the process today. I’m looking forward to some quiet time with the paint, it’s no secret that I’ve had a lot on my mind, really I always do and often I only share the tip of the iceberg that is Benjamin here on WP. It’s honestly to small of a space for me to completely unleash the full complexity of me, to compartmentalized. So with that being said I share myself through my art in hopes that slowly you’ll see my soul and learn to know the man I was, the person I’ve become and the dreams and desires I have.
Until another day,time,life
The day after PT-OT since I haven’t been for over two weeks yesterday’s adventures mixed with some huge emotional mishaps that happened last night have left me simply feeling broken and lost. My body is aching from my ankles to the tops of my shoulders and my heart is heavy with the burdens of living this life. Today I will retreat into the only world I know that doesn’t cause me grief or pain, my studio I know I’m being vague but I have to sorry and these pages of my life are the only semi permanent records of me being here so this is where I pour my heart when there’s nowhere left for me to turn.
3/22/13 6:55a pst
So another week has passed, I used to write in this journal every day, now not so much. This week has been a bit of a roller coaster, my mood has mostly been stable which is nice bit my sleep has been messed up. Lat night I got 2 hr of sleep tbc starting to nod off… Brb
It’s been forever since I’ve written here and today will be no different but someone asked me what it was like as I was being diagnosed well here is my entire 2011 pain journal. If you read this keep in mind I don’t know I have PD until the very end 11/29 I believe is the date: Pain Journal. Benjamin M Prewitt
Constant pain some sharp some dull
Shooting pain down left leg and feet
Grinding/clicking sensation right hip
June:20th saw dr.Winthrop
Would like: X-ray/MRI ect
Blood work:arthritis any others nessasary
Numbness around mid section
Lack of control
Very sharp pain right leg (9)
Lack of control right leg 1 day only
Contacted doc about mloa
Still no word from
Sharp radiating pain both hips
Lose of sensation left and right heel
Numbness left leg coupled with shooting pain both feet and legs
*pain level 7-8 on pain meds 1800 mlg ibuprofen
*10+ mlg flexural
Very sharp pain left hip pain level 7-8
Even on meds had to just sleep. Massive pressure to sharp pain
Severe muscle weakness both legs thighs and calfs
Left leg (hip) numb left heel and big toe,(pins and needles)
Right hip 5-6 very sore.
Leg weakness still present but not as bad as 9/18
Right hip very sharp pain from hip to knee, muscle weakness right leg 6-7 pain
Left leg lower back stiff tight with periodic sharp pain mirroring right leg
Sharp pain both hips , both legs feel weak makes it hard and painful to go from sitting to standing “shaky”
Dull aching pain left hip to right foot w/ sharp pain in an off some numbness mostly after sitting.
Right hip sharp pain from hip to knee back of thigh.
Back at work after two days off.
Hips and heels numb, sharp pain both hips(6-7), strong cramping sensation left hip.
Lower back from about 8 inches above belt line very stiff
Wincing pain radiating from tailbone area running down back left thigh and bottom left foot, right hip/leg muscle weakness noticed when walking up or down stairs
Standard wincing tailbone sharp pain both hips, numbness after sitting or standing for any length of time,also lots of tingling sensation both legs
Pain level 5-6 with spikes 7-8
AM. Extreme pain in the morning both hips. Steady afternoon pain through the hips down to feet both left and right leg. After dinner pain 8-9 after sitting for about 45 min left leg tremors, right leg muscle weakness pain
On the inside cord running from hip to left big toe.
About 10 min of pain free this morning before my body realized I was awake and moving around, joint cramps both hips, lower back stiff pain level low 4-5 been awake for about 1.45 hrs
Have 3:15 apt. With neurologist Dr. Seeto today.
PM just finished with dr.seeto more MRI with and with out contrast pain level low today 4-5 with some sharp pains on and off 4-6 pain today
Woke up at 1:30am had to take pain meds pain radiating down left leg to knee. Pain level 6-7.
Numb tingling finger right and left hand, pain and tingling left leg
Slept for about 2 hrs this afternoon,
Woke with extreme hip and lower back pain, muscle weakness right leg and hip
Pm: still have muscle weakness right leg, pain in both hips and lower back
Had a few hand issues today fingers just didn’t want to work right, dropping things..
Woke around 230 am and had to take more pain meds, both hips and legs 6-7 pain level couldn’t sleep,
7:21 am left left side of my body has decided to be numb today. “tingling feeling left arm, leg, foot.
1:00pm right leg left arm having tremors, left hip and leg painful 6-7
Having some vertigo issues today.
Slept till 3pm woke with very painful hips and left leg.
Woke up 5:00am in tons of pain 8-9 very off balance. Hips left leg and back very sore, some tremor in left arm.
1:00 very tired face, hands , legs all of me so tired. Pain is constant today even with my meds, sharp pulsing pain from hips to knees in both legs.
Woke 5:00am couldn’t sleep anymore to much pain both hips having sharp pain running down both legs 7-8 pain level. So far today no noticeable numbness besides the standard lack of sensation in beltline.
6:35 am numbness coming on strong leftside, panicking a little. left hand, face throat numb little worried. Pain from left hip down to left foot. Still no relief
Meds are doing nothing. Wincing pain tailbone area very strong today. Having a hard time sitting for more than 10-15 at a time. Can stand for about 1/2 hour before hip cramps start.
PM: another really bad pain day can’t get comfortable pain 8-9 sat for 1 HR during dinner tearing, wincing pain both hips and legs to the bottom of my feet. I feel like bowels are starting to slip leaking a little. No accidents yet.
2 500 mg Tylenol and no measurable pain reduction.
7:00 am slept for about 4 hrs in bed until pain was to much then switched to the couch last night . Pretty groggy this morning stiff lower back. Been on my feet for about 2 hrs and the standard pain is here. Muscle weakness right leg, wincing pain tailbone, sharp pain left leg down cord from hip to toe.
Muscle weakness switched to left leg. Noticed during shower little to no dermal sensation around whole waist and mid section. Left arm and most of left leg.can still tell when it’s time to pee thank goodness.
10:30 took 600 mg ibuprofen 11:30 no pain relief taking 500 mg Tylenol let’s hope this helps. Otherwise I move onto the cyclobenzaprine but during the day it makes me really sleepy. Pain level 7-8 both hips down to the bottoms of my feet, very frustrating can’t sit can’t stand very painful day!!!
Mid afternoon has passed with a ton o pain now it’s time for meds
9:35 pm pain meds lasted about 4 hrs
Had 3 600 mg ibuprofen 4 250 mg Tylenol and still in pain to much medication and know if I want to sleep for a few hrs in need to take 10mg cyclobenzaprine . Good night
5:45 am severe muscle weakness in both legs upon waking up, pain in lower back and hip 8-9 ugh. 7;33 left side is numb today, face, arm, leg and waist. Pain level has gone down a bit at a steady 6-7 most pain in left hip down to big toe all so far localized on the left side.
** very vivid dream last night about grandfather who died when I was 13.
Tried to go with out pain meds to see what my real pain level was at made it till about 11:30am had to take 600mg ibuprofen and at 1 took 500 mg of Tylenol pain level on meds is at 7-8 very uncomfortable major cramping feeling in my hips with a overall feeling of unwell. Called dr.frenchs office about adjusting pain meds to something that works.
Pm: 6:00 hip pain very prominent tonight very sharp pain from left hip down leg to foot 7-8 pain level. Having a hard time walking today. Waiting till 8 to take final meds.
Another day of pain. AM both hips sharp pain 6-7 balance issues this morning, standard wincing pain in tailbone took max pain meds yesterday and still little to no relief
It’s been since mid July that this pain has been with me very tired of it.
7:30am 600 mg ibuprofen
1:31pm: very tired today only slept a few hours last night took another ibuprofen and 500 mg of Tylenol slight ebb in pain but still uncomfortable as usual, getting a little worried that I’m not getting any better and I go back to work on the 22nd October.
Woke at 530 am pain level 7-8 very strong wincing pain radiating from tailbone as well as muscle weakness in both legs, very hard to walk first thing in the AM. Balance is very off as well.
10:20 pain level is loquat today 4-5 with some muscle cramping in the hips
But all in all the best day so far I’ve had in months. Still have some muscle weakness left over from this morning but since I’m just at home it’s manageable.
11:00am short term pain relief, left leg is back to hurting pain level6-7 everytime I move pain from hip to toe.
12:00 noon pain level is spiking 8-9 fatigue is setting in going to take a nap.
1:30 can’t sleep tired but can’t take anymore pain stuff until later. 1200 mg ibuprofen and 1000 mg Tylenol so far today and I’m still in to much pain to get comfortable enough to sleep.
Took final pain pill 7;30 can crashed out pain level was very high tonight 7-8 slept on and off got up 3 times.
Woke up 5:00 am very sharp pain in hips, balance a little wobbly this morning. Muscle weakness present went down stairs to get more cat food and had to take it slow. Going to drop off some forms at Dr.French this morning and maybe see if he’s taken a look at my pain chart yet today so far 6-7.having the numbness come back this morning whole left hand side, having some coordination issues. Shooting stars feeling tingling and cramps in the hips
Trying not to take pain pills today want to see how “real” pain level is.
Extreme wincing, tearing pain in tailbone extending down left leg to foot
Can feel the “cord” from hip to toe. Muscle cramps after sitting or standing for any length of time.
12:30 I’m not sure this no pain pill thing is going to work, pain level 8-9 and I’m freaking out it hurts so bad
Ibuprofen after lunch, it won’t take the pain away but its better than this.
3:45 can’t seem to shake the pain today. Hips cramping and left hip to toe huge amounts of pain 7-8 very sharp very persistent.
8:10 pm took cyclopenzaprine pains down to a 5-6 but am having tremors in left arm going to bed hope tomorrows a better day. Have 2 MRI in the morning.
Very groggy 5:30 am just woke took 20 mg of cyclopenzaprine last night, didn’t stop the pain but it knocked me out, only got up once last night. Hips stiff pain level 4-5 but I’ve only been up for about 15 min MRI today at 10:15
And so the pain begins 7:00 am today I can feel both “cords” running down right and left leg, cramps in hips and shooting pain down legs to knees on both sides, been on my feet for 1 1/2 hrs pain 5-6
9:30 am pain level continues to climb at 6-7 I’ve been sitting for about 1/2 hr then getting up and walking around till that hurts to much then back to sitting.
2:30 pm just got up from my post MRI nap . Pain level is holding steady at 6-7 sharp pain in left hip striking down leg. Right hip cramping. Very tired today.
8:30 pm took cyclonenzaprine am getting some relief still very uncomfortable but that’s normal these days, sleeping on the couch tonight so my wife can get some rest with out me getting up a bunch.
Slept in it’s 6:30 a bit groggy from meds but pain level is low this morning 4-5. Been up for about 2 hrs and the pain is back hips, cramp cord pain left side 5-6 the longer I’m awake the greater then pain it seems. 10:45 just got back from the pharmacy took my first tramadol we’ll see how this works. Pain level currently at 6-7.
12:00 noon tramadol has cut the sharp pain so far still have the tearing, wincing pain in tailbone left leg.
Tramadol is cutting the pain a great deal make me pretty loopy but much more comfortable.
Slept most the night tossed and turned a bit. 7:15 am not sure where my pain level is at this morning still a little loopy from pills took 3 in total yesterday they kept the pain away for the most part but made me pretty high. So far this morning cramps in the hips but no sharp pain usually takes about an hour or so before the pain really kicks in we’ll see how it goes today.
9:15am tramadol is weird stuff I can feel the pain and discomfort but it’s changed the way it feels if that makes sense, I can tell my left leg is sore because when it hurts bad I can feel it from my cheek to my toe on the left and side which is what I feel today but the sensation is different with this new drug, not sure how comfortable I am about that, is it better to feel pain than to feel nothing at all? Sharp pains are starting to creep in muscle weakness in both legs and both hips sore on the insides
10:15 am as the tramadol wears off the pain really starts coming on. Tremors in my right arm, muscle weakness in my right leg, feel like a have the shakes a little strange muscle twitches all over.
12:26 pain meds from last night have worn of going to take 1 50mg tramadol. Pain is deep and sharp 7-8
So the trick to tramadol is to take it before the pain starts and keep taking it every 4 hrs
2:45 pm fairly uncomfortable day pain spikes at 7-8 but holding strong at 6-7 even with the new meds. Have to wait till 4 to take next dose.
8:00pm tramadol seems to be working better than anything else. Still uncomfortable but not as many sharp pains tonight except when I kneel down or bend over, it does seem to have calmed the constant ever present mega pain except for the tailbone constant wincing pain overall pain level 5 uncomfortable but manageable.
5:30am slept for about 5 hrs last night literally just got up, will wait till 8:00am to take meds pain level 4-5.
Go to see Dr.Seeto tomorrow to get MRI results I’m a little nervous in two ways, what of it’s ms and if it’s not what’s Is causing my pain,internal hip joints very sore today, left hip “cord” to knee this morning. Anytime I kneel, or bend at the waist still very painful, as the tramadol wears of the pain creeps in pain level starting to rise. Almost 8:00 am and time for first med, pain level is climbing left hip to foot pain has increased greatly since I woke up. Muscle weakness right leg.
**left side of my face feels numb same with belt-line.
Tried to do some laundry today, bad idea bending and kneeing to get laundry done aggravates left leg and hip a lot even with meds pain level 6-7 in left leg.
12:00 noon just took my second med today hopefully that will ease the pain still running at 6-7 after trying to just do normal day to day stuff; right hip cramped and sore, left hip same with shooting pains down to toe every time I kneel or bend over past a standard upright position feels kinda like somebody is trying to pull my left leg out of socket.no relief today I thought for sure this medicine was going to fix me, left leg super sore to toes and tailbone sore as well, pain level 7-8 and ver fatigued and it’s only 1:30 in the afternoon.
4:00 and 3rd med of the day, pain level today is huge,7-8 on meds hip cramps, fatigue and sharp pain down left leg And sharp pains and muscle weakness in right leg all of this from doing laundry.
8:00 pm and my final pill for the night. Seems today that the mighty tramadol is having no effect on my pain still sitting hard at 7-8 severe muscle weakness in my right leg cramps in both hips and sharp shooting pain down my left leg to foot. All because I decided to do some laundry.
Tomorrow with Dr.Seeto 9:30 am and we shall see if we have some answers.
5:30am just got up didn’t sleep very well last night, tossed And turned most of the night couldn’t get comfortable. First thing this morning my legs didn’t want to work, very shaky didn’t seem to have control over them had to focus pretty hard to get things going this morning, pain level is low this morning but let’s see how it is in a few hrs after being on them for a few.
7:00 and the pain has already started to creep in. Left hip pain starting to move down leg very noticeable when getting dressed and putting on socks or sitting for more than 15 min and after standing for any length of time. Wincing pain in tailbone.pain is coming on string same as yesterday have about 1/2 hr before med time. Left side noticeably numb today might just be because I’m nervous about Dr.Seeto visit.
8:00am took my first tramadol for the day. We’ll see what kind of effect it has today.just got back from dr. Seeto no signs of ms but now the start looking at lupus and other neuro disease
Tomorrow with French and then lab work at Salem clinic. Pain level in left hip and leg is still very high 7-8 don’t take my next tramadol till noon about an hr from now.
1:00 pm took pill at noon 2nd of the day and pain level still high 6-7 with spikes to 9 when switching between sitting and standing. Tramadol seemed to only really work for the first 2 days. Leg weakness still in right leg. Right hip sore from the inside out shoot pain down left to bottom of foot. Wincing pain still in tailbone.
2:45 been off my feet for about 2 hrs and my pain level is calming down 5-6 still lots of cramping but the sharp pain is taming down.
5:30 after being asleep most of the afternoon it seems the tramadol has kicked in pain level 4-5 with cramps in hips and a steady pain down the left leg but currently no sharp pains.
7:00 pm pain starting to increase back-up to 6-7 cramps in hips and a new sensation big cramps in left foot might just be from fatigue. Sharp pain in left hip.
4:30 am slept horrible went to bed at 11:00 got up at 1,3 and finally up at 4:30 pain level 6-7 wincing in tail bone very strong, having a really hard time transitioning from sitting to standing, bending over to wash hands painful going to bathroom painful. Going to Dr. French at 8:00 am then blood work for Seeto directly after. Can’t take meds till 8:00 going to be a long day. Pain in both hips and legs. Pain extends down both legs to feet.
6:30 am and my pain level is growing sharp pain down left leg. Very stuff and sore hips cramps in feet and general fatigue.
3:45 pm pain level still pretty high 6-7 with spikes to 8-9 left leg only. Really feels like the worst pulled muscle you’ve ever had, coupled with the wincing pain from my tailbone. Dr. French changed the date of my leave to 11/2 for my next visit.
7:46 took my 4th and final tramadol of the day and I think I might have an allergic reaction, getting really itchy pain level in left leg-hip is still pretty high 7-8 going to call Dr.French on Thursday and leave a message for his medical assistant.
6:30 am slept on the couch last night so my wife could get some sleep. Tramadol is not really working at this point, constant and steady pain in left leg from hip to toe 7-8 pain level never has come back down since Monday work up about 1/2 a dozen times last night.
Called Dr.French this morning haven’t heard back from them yet. I’ve stopped taking tramadol and am going to just take my ibuprofen. Leg still hurts but I’ve been sleeping most of the day. Pain level when I’m up is a constant 6-7 but I’ve found that if I lay on my back with my legs slightly elevated and slightly bent that I can get comfortable enough to sleep. I don’t have any appetite at this point.
Slept in my own bed for a while last night. 1 day down without tramadol my head is starting to clear a bit but my pain level is very high. 7-8 I can only sit for about 15 min then I have to get up and pace the house, then the hip cramps start after about 1/2 of wandering the house so I sit for another 15 min and start the process again, have taken 1000 mg Tylenol so far today. It takes the edge off the pain but it still hurts like crazy. Not sure what the doctors have planned they don’t really seem to know what’s wrong with me.pain level steady at 7-8 with just ibuprofen and Tylenol been taking 1 600mf ib then bout 2 hrs later 1000 mg Tylenol siting then standing walking and stretching then rest then rinse and repeat, goodnight.
5:00 am slept in my bed for about 4 hours last night before o could sleep anymore waking about ever hour to stretch then finally just got up, there is always about 15 min every morning where the pain is low and I think is it over ? Then unfortunately the longer I’m awake and moving around the more it begins to hurt. Pain level 5-6 been up for about an hour. New meds waiting at the pharmacy not sure what kind I get to guinea pig this time hopefully these will ork for more than a day or so.
5:00 pm numb is the word of the day, left hand side of whole body, cheek, arm, chest,leg and foot. Pain level 6-7 and holding. Hand done trouble swallowing and a few moments when my brain and my left arm didn’t seem to communicate. Other than that it’s been a good day. No tramadol in my system and my head is clearing up.
Took cyclobemzaprine to try to get some relief and it worked for the most part was still very painful to move around but it helped take the edge off.
Fell asleep on the couch last night came to bed about 1:35 slept until 4:30 pain was pretty intense when I woke up which is rare but I’m not currently taking and big pain pills. Had a cup of coffee and 1000 mg of Tylenol we’ll just have to wait and see what kind of day it’s going to be. Pain is about 8-9 this morning super sharp pain through out hip structure and shoot down left leg to big toe not very fun. Can sit for about 20 min max then I have to stand and walk around the house until the hip cramps start.
11:30 did some stretching didn’t really seem to help, caused a ton of pain afterwards.
1:00 pm trying to do some laundry but being very careful, last week one day of laundry took me 3 days to recover.
Took a regiment of ibuprofen and Tylenol today and finished the night up with the cyclobenzaprine, it doesn’t take the pain away but it slows it down a bit over all pain level today 6-7
5:30 am Very, very sore this morning. Feels like someone is trying to pull my legs off, very sharp, sore pain pain level 7-8. Need to eat before meds they have been making my stomach hurt a bit. 7:55 am Pain is spiking this morning really bad 8-9 it’s the kinda of pain that makes you want to run away or sends those panic signals to the flight center of the brain, but for me there’s know where to run seemingly no escape from this deep, deep pain inside my hips and legs, imagine the worst Charlie horse or pulled muscle you’ve ever had and x10 and make it constant instead of a breif flash of pain that stops you in your tracks, that’s how I feel almost all the time, with only moments of brief respit. 9:45 took an ibuprofen 600 mg about 1/2 hr ago no refeif, just took 1000 mg Tylenol to try to curb the pain, still at 8-9 today very very not ok today.1:00 pm can’t stand the pain anymore took 1/2 of an old vicoden left over from the dentist and another 1000 mg of Tylenol and now finally some relief. I still can only sit for a short period of time and stand for a short period of time but at least it’s relief. Bed time took 1/2 cyclopenzaprine actually slept most the night.
5:00 am first few hrs of the day it’s hard to tell where my pain level is going to be, still have meds in system so far it’s 6:12 am and I can feel it coming on just not sure how hard it will hit. So far 4-5 with some sharp hip pain left side. MRI at 12:45 today and still no word on blood tests. Back from my MRI and not feeling very good little dizzy little upset tummy. Blood work came back good, so now we wait for MRI results. Pain level has been weird today, some moments of almost no pain to level 9 pain, strange.
Taking meds and going to bed .
5:30 am I’m up and feeling okish pain level is 4-5 with some leg cramps. Left leg is sore but so far no huge pain spikes.7:05 here cones the pain straight down my left leg, from my hip to my toes. Deep inside not on top but inside my hip feels like it’s right on the bone, pain up to 7-8 starting to get that euphoric pain rush, took some Tylenol which probably won’t work but I’ll go through the motions. Get to go pick up some amatriptoline today, stupid antidepressant that don’t work for pain, but my doctors a chicken and wont give me any actual pain pills, so yes been in pain everyday since July and it’s October 19th. 1:45pm pain level is 5-6 depending on what I’m doing today trying not to sit or stand to long so it makes it a bit strange always getting up and sitting down but so far no major pain spikes.except for this morning.
5:15pm pain is starting to get pretty sharp, strange pain tonight, sharp, tearing sensation left hip only. Pain level 6-7 spikes at 8. Ate dinner and took my cyclopenzaprine and going to try to sleep.
Slept very restless woke multiple times and had to take 600 mg ibuprofen before I even got out of bed. This mornings pain is strange it’s a pulsing, tingling sensation pain is at 6-7 weather sitting or standing. We’ll just have to see what kind of day it turns out to be. No word from the pharmacy yet. 8:50 left side is very numb today feels very strange. Pain level is starting to grow and numbness is freaking me out, having some trouble swallowing,
10/21 4:30am slept for about 6 hrs last night, was a bit restless but sleep non the less. The pain has changed, instead of being sharp pains sown my entire leg as it has been for months it feels more like it did when this whole thing started, it feels like someone kick my in the ass as hard as they could. I’m not sure of it’s getting better or just different. The worrisome part is what is causing it? Doctors don’t seem to have any idea. Personally I think the first diagnosis was correct, pryfriformis syndrome was correct, but I’m no doctor.cramps both hips worse when I sit pain level low for me sitting steady at 4-5. 1:30 sharp pain has been minimal today.but I still have that deep internal ache. It changes from dull and deep to sharp depending on what I’m doing.4:00 pm hip cramps and deep pain is getting worse 6-7 pain level that old feeling of having my leg pulled out of socket. 8:00 pm can’t sit still long enough to watch our family movie night movie, this sucks!!
5:30 am pain level is pretty high this morning stayed up till midnight hoping I could sleep in but no the pain work me up at 5 am very tight hips, cramps and that feeling of someone trying to tear off my legs. Fun….so tired of the pain 6-7 this morning when will this stop.
The pain is making me panic this morning, deep inside pain in my hips and legs, makes me want to run away except the pain is with me always.
11:30 am just got back from running some errands with my wife, pain level solid 6-7 from left hip to toe, starts with great pressure in left hip and sends sharp, tight pain to toes.
1:30 pm pain from hip toe big toe still
Persistent 6-7. Today is very tiring, emotionally draining.
7:00 pm took my first dose of amatriptyline tonight (2) 50mg tabs can take up to 3 at night we’ll see how it goes. Feel a little fuzzy in the head and it hasnt really done anything fir the pain besides maybe make my head not care as much about it.
Slept on the couch last night so Mary could get some rest. I feel groggy as hell. Pain level is huge 6-7 the amatriptoline worked good for sleeping but did nothing for the pain. Tailbone very sharp wincing pain, hip cramps both sides with shooting pain down left leg. My head is still fuzzy and I don’t like the antidepressant feeling I get of not feeling like myself.took 1000 mg of Tylenol right when I got up and have zero pain relief 9:30am just to 600 mg ibuprofen in hopes of some pain reduction we’ll see.11:30 no pain relief from the ibuprofen and I’m starting to get the shakes that the other antidepressants gave me I’ll give the amitriptyline a few more days and we’ll see how it goes. 2:00 pm pain,pain,pain so tired of pain 6-7 still in both hips and tailbone Tylenol and ibuprofen are not cutting the pain enough to make a difference
3:00 pm woke up from a nap amitriptyline is making me really tired pain level right now 8-9 left hip hurts really bad
5:00 pm 1000 mg tylenol and 600 mg ibuprofen and I’m still in a hellish amount of pain. The pain is consuming my very brain space can’t think about anything else.this sucks.
8:45 pm today sucked horrible side effects from the amitriptyline . No pain relief and tomorrow I start the fight again to get my paycheck, goodnight.
5:00am pain level 5-6 left hip to toe been up for about 1/2 hr.pain still present left hip cramps, tight cord from hip to ties especially when kneeling or bending. Can’t sit for more than a minute or two before the pain starts to grow. Can only stand for about 1/2 hr before the hips start to cramp. Amitriptyline seems to be easying the pain a bit still taking max Tylenol and ibuprofen and 1 amytriptyline at night, pain level still 4-5 foot and hip cramps
Over all it was a good day until about 6:00 pm pain level spiked to about 7-8 with intense muscle cramps and cord pain from hip to toe left leg.
10/25 5:30 am
Woke to a great deal of pain and stiffness amitriptyline is working for sleep but has yet to control the pain. 7-8 pain level took Tylenol but as expected it has had little to no effect.
At this point I’m taking Max does of Tylenol and ibuprofen with little relief but Dr.French won’t give me anything fir the pain till I’m on amitriptyline for another week.having intense pain in the arch of my foot not sure why it feels like its the same cord attached to my hip. Not sure.
3:00 pm pain levels been hovering at a 5-6 all day hip cramps on both left and right, shooting pain down left leg through the knee down to the foot.
Bed time 10:00 pm pain level still 5-6
Rough night last night got up at 3:00 and had to take ibuprofen was very uncomfortable. Pain level is low 4-5 cramps in hips still can’t sit/stand for long as I stand I get cramps in hips and when I sit I get pulling pain down my left leg. Over all amitriptyline is reducing the sharp pain but I still find it hard to go up and down the stairs or vacuum, very hard to go from a kneeling position to a standing position still need assistance getting up.having a large amount of discomfort this morning sharp pain in left buttock area left leg is very stiff sore feeling.
Walked across the street to get resolve from nana and now my hips cramping like crazy pain 6-7 not constant more like a throbbing. Hip pain pretty constant today. Pressure on tail bone mixed with dull steady(cramping) pain in both hips. Not having a good pain day, right and left hip/leg hurt pretty bad tonight. Tailbone feels like someone is jumping on it. Pain level 7-8 not sharp shoot pain just very strong dull throbbing pain from feet to hips both sides.
Pain level is moderate, 5-6 was able to sleep all night so that’s a good thing. Sharp pain in left hip comes in waves not a constant. 8:00 am starting to have pretty strong hip pain left hand side, feels like really strong muscle cramps, left hip, behind left knee. Generally uncomfortable. The day has been a battle between me and the pain.
Trying to stay one step ahead of it. Pain level has been 5-6 all day trouble kneeling, bending,doing dishes stairs.
7:30 left hip and buttock area very sore tonight.standard daily meds
4000 mg Tylenol
1800 mg ibuprofen
25 mg amitriptyline
10/28 5:30 am
Woke in a bunch of pain left hip very sore, feels like someone tried to pull it out of it’s socket whilst I slept. Over all low back/hip stiff sore and generally uncomfortable pain level 6-7
7:00 am left hip is really starting to hurt. Pain level 8-9. Making me panic a bit can’t get away from the pain.
Tried to be super helpful did laundry, dishes and vacuumed, and now I’m really paying for it. Max OTC Tylenol and ibuprofen with no relief very uncomfortable night, both hips throbbing, leg cramps and very sting pain left leg from hip to toe.
Sharp pain in left hip and tailbone. Really tired of all the pain, just really wish they could give get something definitive. Pain level 6-7 hurts to get up, hurts to sit down have to get up about 200 times a day. Hurts to bend over, dishes, pet the cat, wash hands Ect.. Standard pain today 4-5 with spikes to 8.
10/30 5:00 am
Hard time sleeping woke in alot of pain 7-8 took Tylenol and ibuprofen we’ll see how it goes today.steady bad pain all day. Tonight left hip is incredibly pain full 9 hard and strong its really sharp and really horrible.
8:30 pm the pain is still 9 in my left hip taking a second amitriptyline because I’ve already had max Tylenol and ibuprofen and nothing is helping tonight. Sharp jabbing pain like a knife, hurts so bad it’s amazing. I have been in pain since July 20th when I went to see dr.withthrope I really hope the doctors can figure this out soon.
6:00m groggy pain level is moderate so far today5-6, standard hip cramps, tailbone wincing and some sharp pain in left hip. Nothing out of the normal to report. Amatriptyline at 50 mg makes me aggressive and spacey I don’t really care for it.
9:30 pm takin the last of my pain stuff for the day another 4000 mg Tylenol and 1800 mg ibuprofen day only taking 25 mg of amitriptyline tonight .
5:30 am pain in my tailbone and left hip this morning standard 5-6 dull aching deep pain not sharp like it was before. I have nerve study test with Dr.Seeto at 11:15 today should be interesting. Doing a pain gut check today no Tylenol or ibuprofen so far today and I must say the pain level is climbing quickly currently 9:45 am and pain level is at 6-7. Just got back from my nerve study and the doc says a have some damage to my sciatic nerve in my left leg, unfortunately he also found signs of parkinsons disease I have some more test to do before it’s conclusive. Pain level is still high 6-7 lots of trouble transitioning between sitting and standing, bending and kneeling a problem as well.
Saw Dr. French today due to pain level and mobility pushed my go back date to
12/2 Dr.Seeto found sciatic damage in the left leg and signs of parkinsons, bummer. He’s putting me sinemet a parkinsons drug.
Started my sinemet today and unfortunately I felt the effects right away. Within an hour or so some of my stiffness had dissipated and I had more energy. I’m taking 3 pills each day. Pain level in leg is still high. 6-7 depending on what I’m doing. Feels like it’s getting better with the sinemet and amitriptlyne combo.
6:00 am starting a strict time line on my sinemet. 6a-12p-6p. Woke up pretty stiff took my first pill and within about an hr and 1/2 the stiffness had faded and my over all well being seemed better. By around 10:30-11:00 I could feel the sinemet fading a little bit. Shakes started being more pronounced and started getting a bit more stiff. Took 12p pill and symptoms started abating. Had my wife confirm my shakes last night with the 6 pm pill shakes more pronounced prior to pill and about 1.5 hrs after pill stymptoms lessened. At night 8-9pm regardless of medicine symptoms seem more pronounced at night when I’m tired. Pain level in sciatic persistent although it’s getting easier to move around with the sinemet taking care of the overall stiffness.
Sciatic pain pronounced this morning 6-7 sharp pulling sensation. Pretty stiff this morning until I take the sinemet, unfortunately it seems this medicine is working I can tell when it’s time to take the next pill stiffness returns as well as some fatigue, with it at it’s peak feel pretty good except for the sciatic pain, tonight 8:30 very pronounced pain 7-8 tried to be active today did laundry, cleaned my car. I really just want to get back to normal.
Nothing really new to report sciatic pain 5-7, sinemet seems to be doing it’s job. Unfortunately. Having some tremors in hands, arms, resting leg twitches.
Going in an adventure today hasn’t been out walking around in a while.
Spent about 3 hrs with my wife running errands, phone store and down town, back home know and in a bunch of pain, fatigue level is huge and hip cramps and sciatic pain 7-8 , I thought that with my cane the walk would be ok. No real bending except getting in and out of the car but the 3 hrs walk pretty much ruined the rest of my day.
Having these weird cramps in my left calf. It feels like my left calf is in full hardcore flex when I’m in a standing position. Really hurts.
Left calf is still in flex mode when I stand up. It really sucks, hips and left leg hurt bad today after yesterdays walk, pain level 6-7 today, going to try to take it easy today. Today has been a clock work day, every six hrs I take my sinemet, every 5-5.5 hrs my body tells me it’s time. Not sure if it’s supposed to work like that or what. Left calf muscle is still in flex mode and it’s 6:10 pm 9:00 pm and it’s bed time. Left leg pretty much hurt all day.
Woke up extra early today about 4:15 am pretty uncomfortable today pain level is ok 5-6 very stiff and tight in hips and legs. I have my VEP test today supposed to be a quick and painless test. It hopefully will help Seeto determine if I have parkinson’s. Although he did prescribe a 6 month ration of sinemet so I think he has some idea all ready.
It’s been a few since I’ve written, today Is going ok fatigue is an issue and my hips are very stiff and tight today. Can’t seem to get the tremors in my hands and legs to calm down today. Might be the stress, of getting ready to go back to work. Still haven’t told the kids, don’t have an appointment with the docs until the end of the month 29th and 30th.
Had my appointment with Dr. Seeto today and he confirmed I have parkinsons, not really sure how to feel right now. Scared, tired, upset all the above all at once.
Been having a hard time sleeping lately. Been crashing on the couch fir a few hrs after dinner which seems to be the closest I’m getting to rest. Seems as soon as I hit my bed I just toss and turn until it’s time to take my PD meds.
Sleeping in bed maybe 3-5 hrs a night.
I am going back to work this Monday 12-5 we’ll have to see how the body holds up, I’m very scared I won’t be able to do it anymore then WTF do I do, paycheck? Insurance? I’m really worried.