Page 3 The journey


**Disclaimer** If you’ve reached this page then your either lost or are interested in the mind behind the paint. Be officially warned, I do not censor or edit this page. Some may find a word or two poetic many will find it offensive and a few may actually get it. This page is a personal journal that deals with my real human emotions about,life,sex,politics,living with Parkinson’s disease and any other random crap I need to rant about away from the openly published blog.
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12/3/13
I’m sooooo fucking tired of fighting with M, my ribs are broken, I live in a constant state of fatigue and depression and I’m not sure how much more I can take. This house was supposed to bring us together and all it seems to be doing is driving us further apart. Tonight I wrote a time line list for myself, we have 11 days till the movers come and tons left to pack and organize, with the main stuff at the house pretty much done it’s buckle down and get it done here at the Rees Hill house. So this list caused a huge fight. Parkinson’s has taken my ability to stay on track when it comes to planning and organized tasks. Remembering to do them, the order to do them in etc.. So I write this list and ask M to audit ( dbl check) my list to make sure I’m on track and she gets all pissed off saying I have it wrong and that my list makes her feel like I’m putting pressure on her, I tried to explain the list doesn’t have anything to do with her but she wouldn’t listen refused to believe that I did it for my own help. If she won’t believe me and won’t help me get organized there’s not much I feel I can do.
10.18.13
It’s been 9 days since my last bitch session here on my fuck you hidden words. It’s been a crazy up and down roller coaster ride with this house and we still haven’t received final word as to what’s actually going to happen with it or not. My pd has been everywhere, my heart and soul as well. I fear daily as my symptoms change, the other morning I had my first real “freeze” stuck couldn’t move had to have M touch my hand to trigger my mind from where I was, it was pretty fucking scary. Art sales are going well, which is good because being sick is very expensive here in the USA one has to pay for everything out of pocket. Though I’m finding very little muses these days, no real stand up and fuck me against the wall passion, metaphorically speaking. Well that’s it, studio maybe, couch boring, I need to travel more while I can, before this PD takes all of life’s gifts from me.
B
10.9.13
I’m tired, pissed off and sore. Lol that’s about as truth as I can be. I’m stoked to have so many sweet art things going on I just wish my body could keep up with everything my head and heart want to do
Thing have been shifting back and forth at home
10.3.13
So tired and so sick couldn’t sleep last night at all finally around 1:30a I closed my eyes only to wake in a startle at 4:a thankfully just intime to take my pills. Much love
B
9.28.13
As you may have guess someone read my journal who maybe shouldn’t have or who doesn’t the posses the compassion to understand that these feelings are my most deep and personal feelings not play things or fun little bits to chit chat about at work. So really fuck them. Yes M who never by her own choice has now read my journal thanks to some dumb shit at work who obviously doesn’t care about me because they would would have come to me and said wow are things okay. Right when things were getting ironed out. I love my wife and for all her quirks she is kind and caring but she has no interest in being my carer and I don’t blame her for that. I wouldn’t want that job either. I would never ask someone to sacrifice there happiness or life to care for me. That being said
I may or may not continue to journal here I may just write my memoirs somewhere else. We shall see.
Stats.
Pain:7
Tremor:4
Slow:6
Focus:5
Stiff:8

9/25/13 4a pst
I’m not sure I’m rest for the day. Woke at 3a in full cramp mode, felt like somebody had a rope around my neck and was trying to make me touch my forehead to my chest. Shoulder sup hunched up and rolled. Honestly I’m not sure what to do these days. Little things keep happening, lack of focus, depression, massive headaches at the base of my neck/head. This new super rigidity from my hips to my neck/ears. Sad thing is I stretch all day long. I was hoping that the Percocet were going to be the answer to my pain and they worked great the first two day then after that not so much. Yesterday after a day of trying to simply have a life ended the day with 30 odd PD meds in my system and 5 Percocet and was still at a pain level of 6-7. I didn’t even get all my stuff done. I guess I don’t understand how these people I read about run races and climb mountains all whilst having PD. he’ll my joints and body are so stiff even on my meds I can’t imagine. Oh well neuro visit on the 30th. Which I’ll be going to by myself, makes me so mad/sad I asked M to please come with its a neuro appointment it very important I only have like two of these a year and this one is by my request because of my symptom changes. I remember when I first really started taking my meds how when I woke up I felt like a little old man sooo stiff and hunched. I’d shuffle down the hall to the coffee maker take my pills and 1/2 hour later I’d be feeling pretty good I’d go to work 8-10 hrs. Now often it’s not until my 3rd pill set around 10a that I feel even remotely okay. It’s hard because who can I talk to my doc team is good but because PD is so individual to how it progresses and effects people nobody can really tell you what to expect. Should younger PWP notice the cognitive effects greater because we’re used to functioning at a much more quick pace cognitively speaking. But physically nobody can tell you what to really expect or what it actually means “you’ll” get stiff. Okay…..? Like a board or what how stiff forever? Yes 😦 fuck 😦 okay. I was reading about pain with pd last night and I guess I’m just the unlucky one. Honestly I expect then to eventually add a plus + to the end of my condition. I mean it’s to damn coincidental that I have some many of these out of the box symptoms. My pain isn’t average or occasional it constant and extreme. The only time I’ve been pain free was when I take my pain meds to the max dose prescribed. 6 Percocet a day that to me seems like a hell of a lot of narcs to be taking a day plus I can function on 6 a day and still be awake and an active member of the family. Sure I could take 6 a day and sit around the house and space out. Lol eat popcorn and watch movies. Watch bad 80’s movies and giggle to myself about how high I am. But really is that living or just being a live. Anyhow I need to go stretch. Sorry to rant, but this is my place to do so 😛
B.

9.20.13
After finding only two hrs of sleep last night and waking to a body writhing in its slumber I decided it was time to get up. Sometimes I think the hardest past about being an artist. This the sheer hugeness from which I feel and think.
Last night I creaked down my two flights of stairs to the sleeping couch about 9p figured I’d take my pm meds 1/2 a pain tab an call it an early night see yesterday was funny. Though my new pain meds seem to be working well, my brain hasn’t been able to find my new signals. Before my pain helped me regulate how far I was pushing my body. Sadly yes even walking a block or two in the wrong conditions can cause me a great deal of fatigue. Well these new pills block my brain from feeling those signals. Around 11a I met a friend for lunch she noticed I look a by tired so I true to go slow an take it easy. At lunch my hands were shaking so bad I could only eat about 1/2 before I was frustrated to the point of embarrassment 😦 was a good sandwich too. Then after some shopping I was exhausted 2p came and I was done but by then it was to late the fatigue had ahold of me and wasn’t letting go. Hey at least I had one really good day on the 18th really good days only happen one or twice every few months they are the kind of days where I almost don’t feel like I have PD, my spirits soar and well I usually over do it because I feel like I can. Remember I’m not an old guy so when I feel good I want to do stuff. Anyhow it’s pill time 4a start of the first round.
Much love
B
9.?.13
You might wonder why the question mark?.. Well it’s honesty.. Sure I could look and see what the number of the day is but as it stands on this second of this time I don’t know.
Often climbing out of a pit of depression can be pretty hard and if I’m truly honest with myself I still feel like a hollow shell desperately looking for the light. My heart is empty. My soul starving, craving to be held and cared for, to not feel so alone. But I live in a house with an understanding. The understanding that that won’t happen. So then what do I do? What does a man who WILL require care do. I’ll tell you..Nothing because the fear of being completely truly alone with this disease is petrifying. So I will sleep on the couch as I have for the past two years, I will do my chores, smile and carry on. And each night I will retreat to my sofa find comfort in my electric light. And wish that one could hold a kind words hand. That one could rest his head on the lap of a kind word. Or kiss the lips of a sentiment. But until that day. I will live half in darkness and half in the light.
Today:
Pain:6
Tremor:4
Stiff:7
Slow:6
Focus:4
1= good 10= bad
B.
9.?.13 3:52am pst
I done… I’m tired and broken and f’ing sick and tired of disappointment. I’m tired of living in a marriage that feels empty. I’m tired of Parkinson’s disease. I’m tired of pretending everything’s okay. I sit here with years streaming down my checks writing to nobody and everybody in a place that lives for the seconds that tick by. If it were not for my son I’d be done because this sucks.
But thankfully I love my son more than I love this life and this body and for him I wake up everyday, make lunch, talk about the day, give advice and pretend to be strong. I don’t know if its pills or Parkinson’s but this fucking whirl wind of depression has got to stop. My body and mind a like a whirlwind roller coaster going so fast with no end in sight.
Today is PT and speech no OT which is fine she’s a very nice person but doesn’t really do anything that given sometime and information couldn’t be found online. All my exercises I do at home. Anyhow whatever.
Big kisses
B
9.?.13
In this broken night there are no kind words to be found
No crickets no frog to sing a morning song
Only a damp chill greets my dark dawn
With coffee in hand and pills in toe I fumble away my mornings musings
To the soft electric light glow as the world sleeps.
B~xx 2013
I need an adventure something to stir the fire
9/13/13
It’s Friday the 13th ooooh :-0 yesterday a person who I hold very near and dear to me had a death in the family. Sadly I can not be by this persons side while there family goes through this tragedy.
It breaks my heart to see people in pain. I have been conditioned all my life to be a fixed a carer for those in need and it makes me crazy to not be able to help. So I will wait patiently because in all reality it has nothing to do with me and my feelings on the subject are just my own. So I will wait, like a silent guardian angel. My feels are nothing for I am just a vessel for this life to occupy.
Happy Friday.
Namaste
Benjamin

9.12.13
I’m tired, tired of the pain, tired of the wiggles the stiffness. I’m tired of the aching joints and tired of the fear. I wake everyday take a deep breath and listen to my body. Years of martial arts and meditation at a young age taught me to listen and feel. Maybe that’s why this effects me so…. The very things I spent a life time honing have turned against me. I feel every random twitch and flicker of my body, observe as one small ache grows to a beast of tear jerking proportion. I’m tired of being tired. Everyday I wake and breath am hopeful, say my blessings find my center and get up. Some days it’s harder than others.
Stats:
Pain:8
Slow:7
Stiff:7
Focus:5
Tremor:6
** overall not good 😦
Seriously f%#%ing tired of this..
Putting on happy face 😀 time to make it okay for everybody else…..sigh……

9/11/13 4:31a pst
I’ve been up since 2:30a so far today I seem to have over come the depression that settled so hard
In my heart yesterday. Some days is just a demon I can’t escape. Living on disability is hard, rent is late, bills are late and as a provider for the family that’s a huge weight to bare. I haven’t sold anything since may of this yearvwhich has my confidence down. I opened a stupid etsy store and so far the only thing it’s done is cost me money, zero sales. I just don’t understand prior to going to the uk things were on a huge up take, sales were good, I’d just opened the print shop, did a press release and things seemed very good. Then for some reason everything stopped. I can’t help but think is it me? Is it my Art or my pov? Have I lost connection with my readers or myself. I really don’t know. Today being 9/11 in the states ppl are going to be freaking out. I personally find it narrow minded and selfish of us. Yes I grieve for the loss of my countrymen but they were not the first to lose life or be victims of war. Sure we think ourselves untouchable and what happened on 9/11 was the universe slapping the USA in the face and saying hello get off your high horse. Anyhow today with any luck will be a day filled with paint for me, for my heart and soul I need to create. It gives me focus and peace of mind. Things have fallen back to there old ways at home which makes me sad, I figure I must be destined to feel un-appreciated and un-wanted in my marriage as some form of karmic debt, it’s one thing to sleep on the couch as I do, but to feel that it’s a requirement is a lonely feeling and bitter reality. Okay enough whining, right…
Stats:
Pain:5-6
Stiff:8
Tremor:4
Focus:7
Slow:6
1=I feel normal 10=go to ER now
Much love
B

9/?/13 4a
You know I love it when I wake up and I can’t remember or shall I say I forget I have PD, honestly it makes me giggle a bit.
Scene: 3am me sitting on the deck drinking coffee looking at phone wondering why my hands are shaking do much……..oh yeah that’s right…..O.o
Or just now trying to walk down the stairs %#%#!?% this really hurts what the hell did I do?…..oh yeah…..!! Lol
I know it may not seem funny to some of you reading this but from my stand point it’s a tad on the funny side. I guess it’s a bitter pill for some to swallow that a fellow can have such dark humor about ones own demise.
Sometimes it scares the hell out of me, well actually it scares the hell out of me all the time but one can’t life a life always afraid. At some point in each of our lives we must learn to give up the reigns and let life do what it’s going to do. I’m not saying we relive the 60’s and sell the house, car and clothes and move to a commune relax and live a life of freedom……..? Hmmmm sounds good (mental note sell everything) lol just kidding. I’m just saying that sometimes in life not everything is under our control. So plan for the worst, hope for the best and start living the life you’ve always wanted today!! Why?? You may ask.. Because tomorrow doesn’t exist, you’ll never reach tomorrow it’s a word….not a place…
Much love and chocolate bunnies.
B~xx
Stats:
Pain:7
Tremor:5
Stiff:8
Slow:6
Focus:7
1=great
10= ER

9/5/13 5:25am pst
I write these words here for a purpose. This is not a public space that appears on a reader, one can not happen by. I hate to sound as if I’m complaining yet the stiffness and neuropathic pain are extreme today. It’s not in my nature to be half assed. To me test means give it 100% so I do. Yesterday was rating day in PT therefore today I’d holy shit I’m broken day. See the muscles and tendons have shrunk in the interior of my hips socket so when I test and put that much pressure and exertion on my hips it causes a great deal of isolated tissue damage just like a body builder would get when working isolated muscle groups. To add insult to injury my dyskinesia or wiggles as I like to call them perpetuate the issue by making my legs move constantly making the pain worse from the motion. Anyhow here’s my morning update:
Pain : 6-7
Tremor: 6
Ridged/slow:5
Really I’m so tired if being broken somedays like today I really don’t want to be me.
B.

9/2/13 2:50am pst
I have to admit I’m a bit scared its the second morning in a row I’ve woken up unable to move my left leg. Extreme stage 10 pain when I go to straighten it out or put any weight on it. Almost as if the bones in the knee joint are not connecting correctly. All of my joints in the lower half of my body have become increasingly stiff, they snap crackle and pop at every motion. I can still trigger a sciatic twinge with the simple flex of my toes on my left leg. My feet have been for the past 2-3 months been going into dystonic cramps (spasms) with the slightest stretch near instant cramps in the arch of my foot that draws my toes up as if they are trying to fold themselves backwards to the top if my foot. Neck pain and stiffness has also increased 10 fold over the past couple of months making it increasingly hard to drive as I’m having a hard time turning my head without turning my entire body. I must say this is turning into somewhat of a living hell!! I’m constantly medicated to the point of numbness yet I fear it’s time to increase my PD meds. Yet still another 4 months before I see my movement specialist at OHSU. I’ve been trying to put on a happy face but I’m pretty sure those physically closest to me can tell I’m getting worse. I’ve started using my cane around the house which is new for me it used to be just an outside thing for stability and balance. Now a days I’m having trouble 50% of the time getting up from a sitting position without assistance. I lose 95 % of the feeling in my legs and equally in muscle strength when I kneel down. Honestly the changes as of late I find to be very intrusive to day to day life and rather scary as hell. Today’s going to be interesting I have M’s father and stepmom flying in from Chicago yet she’ll not be here, she’ll be at work 😦 so its my duty today to entertain. There an a typical 1950’s generation first statement is about the weather the second about what ever sports thing is big at the moment. Then they’ll ask in an obligatory fashion how I’m doing then generalize it 100% back towards themselves. I understand its just there way of empathizing and trying to relate and come to terms. This visit should be surprising for them since they only come down 2 a year and my symptoms have progressed considerably since last they saw me. Anyhow that’s the 411 with me.
B.

8/??/13 4:00am pst
The cricket symphony greets me this morning
As I wake in a state of shock.
Body moving faster than my morning mind can race.
Only traces of my thoughts etched on a silver screen

Pain is the name of today’s game we play
It found me whilst I slept and joined the shakes
That woke me from my stasis. It’s not sleep
Anymore, truly more like a waking dream with
My eyes closed, with dreams That haunt me till
I rise on simply nothingness..

Today I must be reclusive and hide, from myself from the world. To much ppl time
Lately, today is a day of only paint and words. Thoughts comprised of lyrical nonsense
Wrapped in the thick smothering pain and shakes of Parkinson’s. I feel alone in this world.
I put on the pretty Benjamin mask to preform the meet and greet and assure all that I’m okay.
When in reality I hurt, I’m scared of the night. I’m stiff and sore and lost in my own mind.
Check in time:
Pain: 7-8
* both hips,lower back, neck and left shoulder.
** special note had trouble hold iPad singularly with left hand
Tremor:9
Balance:6-7
Clarity: aware and present, but lack focus. Word recall is slow at best.

8/28/13 5.55AM PST

today i am insecure, im very aware of my body, my weight gain from my pills, the shaking of my body the pain in my joints. Today i really don’t want to be me. today i feel like the scared little boy stuck in a mans broken body wondering what the hell happened to my life. tears run down my cheeks as i type in fear of whats to come of this shell. as i type hitting each key 3-4 times each back space, correct, retype so frustrating. I don’t want to be me. I want to be understood, i want to be respected for me not for being broken. I want to be able to communicate with out coming across as a jerk. i want to be able to perceive what people see. i literally have no idea how ppl in the flesh see me, i have no reflection and it scares me makes me sad. that is who and how i am today. the end.

b
8/26/13
People often ask me how I can be so positive so often and honestly it’s because I have to be, yes I do want good things for all people and I do want to bring a certain level of self awareness and enlightenment to people’s lives but when it’s comes down to it I do it for me. I’ve been taught over the years that our body and minds are truly vessels that our souls reside in. I do believe that. My vessel these days have become a very interesting place I be, not always the best or most peaceful place. Like today my tremor is a 9 my movement is very jerky and painful but as I stated in a post this morning we all have to chose every day who and how we will be and if I wake up everyday and live with regret or the mind set of a victim blaming all of my issues in the world and “things” that have happened to me then that’s who I will be. And I don’t want to be that person nobody should be that person. So I try, try very hard each day to accept my life and the challenges it has and simply move on. Even writing this journal entry has more to do with reminding myself of things than anything else. If I’m lucky someone in need will stumble here and read and possibly get hope but if not I will. Then I turn I can actively remember to get strength, hope and courage to others. The end. B

8/??/13 4:28AM
Been up since 3A I feel like my brain and body are going to explode for the lack of creativity. I’ve been forming these visions of these next paintings in my mind for the past week but I can’t paint them until I’ve felt them completely. I didn’t place in the state fair no surprises to me there. I still haven’t seen the winning or placing pieces. I really need to not enter these juried shows. I take it way to personally
For me art is not about business it’s not about creating a collection or style. I mean we honor the masters for what they’ve done, but in all truth had they have lived longer would have continued to do so? I’ve studied in great depth down to the brush strokes of Dali, Picasso, Miro, Van Gogh and they all evolved to the point where they were when they died but I think it’s childish and naive to think had they lived that their evolution would have stopped.
Anyhow I’ve been working through a great deal of fear as of late. Some how it snuck in when I was sleeping and took hold. Today:
Pain: 5/6
Tremor: 6/7
Stiff 6/7
Today I hope to paint but I’m afraid of myself I think. I’ve been questioning myself to much lately…..
B

8/23/13 2:16 am pst
Sleep came and went lat night. I’m thankful for the small amount I did get
Sometimes it just feels odd to sleep so little in the night 11p-2am. Though the cricket sing a beautiful symphony tonight and the raccoons are minding there manners so its peaceful. The other morning mamma R and her babies were on the move and she didn’t even say hi she just started barking and chirping. Meanies I tell you.
Pain level 7 this morning I think that’s what work me today. Slept in the upstairs couch 😦
Tremor 8
Stiff 7
Slow 6
Over-all not to bad.
Though my neck has been really stiff to the point of pain the past few days. Okay that’s the update I feel words keeling out if my head if I don’t capture them they’ll be gone forever.
B

8/20?/13 4:25am pst been up since 2:30am pst.
I’m grumpy as hell. Hi, sorry I just needed to get that our there. Got a letter from my private insurance company say “oh we tried to contact you 8/2/13 here’s a letter saying we need more information to continue to verify your claim. Oh hello it’s fucking Parkinson’s disease, unless somebody came up with a cure that I don’t know about it I still have the mother fucker. I’d gladly share some with those pricks if they’d like it. Pft!! So they sent letter out to the doctor team which of coarse I’m not concerned with because nothing’s changed I’ve gotten progressively worse since I left work in October of 12. I just find it insulting as hell. Maybe it’s just me being sensitive which is highly probable I have a ton of stuff on my mind lately. People have been doing really amazing things for me lately and yes it should make me feel wonderful and it does but it’s also a double edged sword, because my monkey mind can’t help in some tiny way go wow look at all this shit you can’t do anymore. I’ve been the rock, shield and sword for so long sometimes it’s just really hard to accept these limitations. Okay deep breath.. Life is real it’s hard and that’s why every day I speak to being kind and paying it forward. Because life will kick our asses for us and if WE are not kind to each other who will be.
Benjamin

8/?/13 8/18/13 I cheated and looked.
I kept this out of the post because I needed to try to speak in a fashion specific but often you ask how am I? Today I am broken, beat up stiff old man in pain. My heart is full if joy and thanks. My body fights me at every turn. Much love.
B.

8/15/13 3:05am pst
I awake this morning with the feeling of having my spine ripped out, drat of I know but it hurts. I whole torso feels crushed I have no I sea why, I’m super drawn in enough for now can’t type..
B

8/14/13 4:33pm pst
Have I mentioned how much I F’n hate PD…? Grrrrrrrr I hate that this beast rides my every F’n motion. I was going to go see an old friend today 1 of 3 that I’ve known for 30 years and I can’t 😦 I can’t drive that far on my own and I am feeling really insure about being symptomatic in public. Not to mention the fatigue monster has been eating me alive lately. Such a relentless bastard. I tried so jar to stay upbeat yet in my mellow zone today so I could save as much emotional energy as possible and still 3-4pm comes around and I’m f’cked I feel like crap my joints hurt I’m shaky,(tremor) slow it just bums me out 😦 I really need to see different things, I stare at these walls all day, I walk as far as I can for as long as I can, I weight train, I stretch literally all day. Yet this stiffness robs me of my life. Imagine jumping into a frozen lake, now pull your self out.. That slow, muscles cramping, aching horrible feeling, you know the one?? Now take that feeling and realize you’ve just woken up and that’s possibly the best your going to feel all day, everyday for the test of your life….. Yay fun….. Anyhow I’ve no more energy, to rant, bitch or moan anymore. Nothing can fix it, it’s not going away… Grumpy, depressed and pissed.
B.

8/12/13
4:41am pst
Sometimes I have to laugh, as I sit outside this morning drinking my morning coffee wondering why it’s so hard to type……oh yeah that’s right I have PD 😛 Mr. Shaky hands. Lol. I did pretty good last night I slept from 11:30 till 4a thankfully I was able to get to sleep, I put on some random classical station and drifted away. So often these days it turns into me laying there till 1-2a then getting up at 4. So again yay!!
I’ve been experiencing a Ron of muscle weakness right at the top of my joints lately. The muscles that attach right before the knees and right before the elbows. Not sure why. I’ve been walking everyday and basically moving all the time the only time I’m not moving is when I’m sleeping and even then I twitch or so I’m told, hence me sleeping on the couch.. Almost two years now 😦
PT – OT – Speech today at 10:30a 😦 PT guy thinks I need customized orthotics to help me walk better problem is they are super expensive 175$ and since I have been paid in almost 45 days that’s sure not going to happen. Anyhow time for meds and stretches. Yes btw I stretch all day everyday at just about every given chance. If not the tendons and muscles tighten to the point of pain and well pain hurts 😉
B

8/10/13
8:09pm pst
Today was an interesting day, it started no different that any other, shaky, stiff, slow. The cricket were out again this morning, one of my small treasures in the day. I. Found myself in the studio bright and early 4am unfortunately, nobody told my nervous system that I needed to have a good day, my pain quickly escalated via my sciatic nerves and this strange sensation I get, it’s really hard to explain, kind of like a low volt shock that never goes away. After a while it starts to cause internal panic attacks, which basically translates into dyskinesia. Throw in enough dyskinesia during the day and all my joints start seizing up from the constant movement. Not complaining here. Really just explaining. I had a good day, I dropped off Art, I met a friend for a meeting about the FoB site. I over exhausted myself lol and took a big nap when I got home. To much excitement for the day so AM painting was all I can do today. Tomorrow, Sunday I guess, it’s easy to lose track. Okay that’s all I’ve got today, I’m tired and distracted. Overall pain 6-7 after 6 Vicodin today, large bouts of dyskinesia and Bradykinesia (slowness) joint pain in left hip very high, 8 any worse and I’ll pass out lol, it’s a shitty way to reach sleep, but at least it’s sleep.
Hugs
B

8/9/13
9:29p pst
Today was actually an okay day, I woke up at 3am stood straight up like I was late for work, shuffled over to the pills and coffee and started the day. 60mlg cymbalta and a cup of coffee strong enough to wake the dead. 4am rolls around and it Pd meds and pain pills for breakfast. My resting tremor is often worse in the moring, today is no different, lol, more coffee creamer on the counter than in the cup. Pain in shoulders and hips 6-7, gait, short and unbalanced. Mood a bit depressed, but otherwise just another day. Normally I like to write in the journal in the morning I guess today is an exception. Pain toned down to a steady 5 most if the day as long as I don’t lift above my shoulders or kneel down. Fatigue was the big bitch this afternoon, after lunch I took my fist full of pills but since I’d eaten there effectiveness was about 1/2 to 1/3 of what they should have been. Another time I’ll explain the whole pd meds and protein, currently not in the mood to get all sciencey. Take care.
B~xxx

8/4/13 6:17A
The thing I hate about PD is regardless of how gentle I am with myself I always life with pain. I write this words here because I don’t want it inspire a thousand words of “sorry” I just need to talk about it. Yesterday I treated myself to a relaxing day I the studio. Yet it seems no matter what I do I still wake up with the same shakes and quakes. The same rigidity and stiffness. Imagine how you feel after a 12-15 hr day at work durning the holiday season or what ever your busy season is that’s how I start my days. I’m in a great mood bit I must say my sciatic pain is acute this morning 7-8 and my left shoulder and neck same. My neurologist used to like to argue with me that PD doesn’t cause pain. I think she naive. Sure PD it’s self does not cause pain it causes extreme rigidity and stiffness in the muscle and tendons. Consequently causing a great deal of pain when the PWP try’s to move. It’s like sticking a rubber band in the freezer for the night then taking it out and trying to stretch it. Anyhow
Another day with my sweet mistress PD. I’m off to paint and see if I can’t find a happy place for my head and heart to be.
Benjamin
2013

7/28/13
Sick and tired of being sick and tired.
Im having one if those days where simply tired of being sick. Tired of taking pills and having my stomach hurt and be nauseas. Tired of my muscles being still and sore. Shaky and tired. I really hate to complain but it just gets old, I barely can remember what it feels like to feel “good” happy and worry free. I recently added a total of 6-8 more pills to make daily regiment of pills making it between 30-36 depending in how many pain pills I take. I mean really that’s to many pills.
Anyhow I’m done complaining.
B.

7/24/13 3:am
Sleep seems to be an optional thing today last night how ever you want to look at it. I went to bed at 11pm last night woke up at 1 then 2 and 2:30a now it’s 3:10a and I’ve just made coffee. It’s strange because I have everything and nothing on my mind all at once.

7/23/13 4:a
Sometimes I’m not really sure what to so this myself, days like yesterday really make me feel like a failure. Here I’m trying to send a positive message about over coming diversity in the face of disability and yet I still continue to splash my bad days across this electric light. In hind sight it makes me shameful. That’s the tricky thing about PD it’s pretty unpredictable. Anyhow it’s a new day and every new day deserves to wear its own clothes and not those of the day before, so today we start fresh.

7/18/13
Should anybody ever offer a free helping of Parkinson’s to you I would advise you pass, it does horrible things to you waste line and ruins your BRAIN!!! I’ve been dealing with insurance fuck ups and trying to get 3 different insurance ppl to communicate not only with me but each other as well as the federal government. I must say its been like trying to play pin the tail on the T~Rex with out getting stomped to death. See, after 25+ years of executive management my brain still thinks it can scan large documents, pick out the important stuff, filter out the crap and then make good working sense if the rest. Well….No Pd messed that process up completely. Know I look at all these forms and notices and my head goes blank, it literally turns to mush I get about 1/2 a page down and can’t recall paragraph 1 then I re read forget or get lost or distracted start again, get frustrated, get know here fast, see the cycle here….? It’s not good. So I’m hoping with a little help from M and a lot of help from my Parkinson’s advocate that I can get all this paperwork finished and submitted on time. My pain level is finally back down to a marginal level kind of. If living at a 5-6 is reasonable, personally I’m really worried about my health right now. My muscle tissue feels like its doing strange things, pieces slipping out of place randomly, ie; right kneecap has decided to wonder around as of late. Right side muscle stiffness and rigidity are starting to become far more prominent, which means my PD is still marching on at to me, an alarming rate, maybe not to the doctors alarming but still from my pov 2 years ago I was a strong, active business savy ” go getter” and now I sound like a two year old when I’m reading emails or letters out loud. Which is stupid bc I can read my poetry out loud on sound cloud just fine. Anyhow standard issues today, dystonic cramping in my left foot, causing my toes to pull back like the exorcist owns them. Stiffness and rigidity ( full body ) with special love being given to all the major joints, hips,back,shoulders, embows,wrists and knees.
But time marches on and I need a shower, shave and to get out amongst the humans for a while.
Cheers
B~xx

7/17?/13 3am
Ah sleep my fickle friend, you can early for me last night.7:30-8p and you swept me off my feet. Then left like a lover in the early morning hours 2:30a 😦 I’m up writing in my journal, fluttering around twitter like a little butterfly in the night.
My body is of coarse sore and tight from the walking I did yesterday.
It’s kinda of funny for a guy who’s suppose to be pretty smart I’m often dumb as hell! So I’m feeling moderately better yesterday, not really but I’m at least ahead of the pain instead of behind it. Pain sold 6-7 upon waking spikes of systolic cramps continue in the arch of my left foot, it’s been that way for days 😦 feels like the heels from hell that won’t come off! Hips super stiff and right knee has slipped out of place twice while I stand here typing this post. Other that that I’m fine 😉 oh except I have to go to PT today 😦 they called last night. Where concerned I’d missed a session and didn’t want to fall behind. Bummer but good as well.
3:25a time for coffee. Hugs.
B.

5/10/13
In a strange way I had hoped I wouldn’t need these pages anymore that I’d be able to somehow cast out all my demons and become free from the torture that holds my soul.
I will not post about these things but If your here an you read them you’ve read them so be it. I spent all my energy after painting a bit today trying to please the one person whom it seems I no longer know how to please the Mrs. House cleaned and vacuumed did laundry (fucking hate laundry-well hate stairs) two flights 😦 spent two days working on this soup only to have her come home and complain about it being a long day. This is mind you after a leisurely 2.5 shopping trip with nana. I needed help and was treated poorly and I want to scream and throw things and stomp my feet like a child right now as my feeling are hurt. She didn’t even try my fucking soup.

5/30/13
4:24am PST
6 years ago today my father passed away, I’ve already posted a couple of things about it so I’m not going to ramble on here about it also. It sucks though they same that time heals all wounds and that oh “it will get better”
Well that’s bullshit, it never gets better, it changes, maybe even becomes numb or blurred a bit. But no it never gets better when you lose someone you love it sucks in that spot in your heart for the rest of your life.
* different topic:

6/2/13 2:28am pst
Pain level 6-7 woke me around 1:30am today, dystonic cramps in my feet and shoulder/hip stiffness
Things on my birthday were pretty cool. Got some clothes and art store money, was treated respectfully around the house so that was nice. To bad all those gains ended the day after my birthday. Mrs and I still can’t seem to find a common ground. Pd has been steadily progressing pretty much completely bilateral, stiffness and joint pain has spread equally to right hand side it’s pretty much scary as hell to watch my body and mind start to fail. More later….
6/6/13
Sometimes I feel like I’m simply just done with this Mrs. Things cruise along like there getting better then wham! Today Father’s Day I’m feeling a lot a bit blue because neither of my kids remembered its Father’s Day so neither of my kids wished me anything today M didn’t bother to remind them nothing. When she asked me what’s wrong I told her and she turned the whole fucking thing around and made me feel like I was being needy and I should just get over it. Then when I stated that I felt her reaction was crappy and maybe a little empathy would have been nice she told me I was being defensive and negative. Truly just another log on the fire of a rapidly crumbling marriage. She tells me that she wants me to change so I do my best to “correct” my attitude and she says I’m not doing enough or she’s still not happy but won’t tell me what she’s unhappy with. Personally I think she’s simply tired of me and this marriage she’s given up trying.
6/17/13
Woke this morning at 4a after a horrid night of toss and turn maybe 3-4 hrs of sleep. Pain Lvl is very high in hips, shoulders and neck 7-8 having trouble moving my head and weakling so far this morning. Not fun.
6/21/13 6:40a
Sleep doesn’t really seem to be much of an option these days. I’ve been getting between 2-5 hours max a day for months now if I’m really lucky I’ll catch a nap in the afternoon but then only sleep of a couple hrs at night. My everything is starting to suffer, time to paint, focus in planning and projects. Hold normal conversation from a start to finish on one subject. My mood honestly has been shit lately. Very little patience for anything. I’m trying to stay positive and search for the light in everything but the fatigue and pain have been wearing me down so immensely these past few weeks I’m just not sure what to do. Breath have faith and keep moving forward I guess is the best I can do.
B
7/12/13

Be this electric light I write and wake, body stiff and hands they shake. 3:30am and I wake from my slumber to a new day. It’s funny at time as I wake from my medicated rest, body stiff and slow as if frozen over night. Head still spinning, feet shuffle to the coffee lot as I wait patiently for the first few drops to be quickly poured. I reach for my phone and begin to type sending greeting and love across land and time, I pause and wonder…. Why are my hands shaking so much? Lol then I remember oh…that’s right…. Damn… Time for my pills…it wasn’t a dream…fuck.. Oh well more coffee, more pills, more words and paint to easy my troubled soul and broken form. At least I can breath and see. Today is no different than most every joint in my body is angry like I ran a marathon. Muscles torn and stiff, pain level 7-8 this morning a bit higher than normal. So I’ll start the day with a couple Vicodin strong enough to make a normal human drool for a day and if I’m lucky it will bring my pain down to a 5-6. This morning my head is pounding like freight train which is no fair. I didn’t have a drop to drink last night. Any how good humans its pill and coffee time. Much love.
Benjamin
7/15/13 1:12am
My sleep patterns are so ef’ed up sigh…. 😦 it a huge vicious cycle. My pain level has been crazy huge. Which for those who haven’t experienced prolonged pain it’s hard to explain, but it can be exhausting it also starts to effect ones ability to be in a good mood. I want to be happy and cheerful, really I’ve only one reason not to be. But he pain eats away at your strength my ability to smile to deflect and reroute negative energy until I snap, I get grumpy for “no reason” of coarse no reason is an understatement being in stage 7-8 pain for days on end is absolutely a reason to get a bit snappish I just dislike that it happens. Then it causes fatigue like today and the past few days be 8:30-9p at the latest I’m exhausted, mentally and physically I can’t handle anymore pain. My Vicodin are not cutting it I’m basically takins dbl the amount and still getting virtually no relief at its peak my mind is a piece for a short period then I move my body and the pain breaks through. Okay cheers going to try and sleep soon.
Benjamin

45 thoughts on “Page 3 The journey

  1. not gonna like this as in “Like”, inane as i think that is… this hurts my heart, dear B.. i so wish it were different for you, that somehow she would wake up and truly see you. again… xx

    Like

  2. Sigh. I don’t know what to say, my dear, I have probably been guilty of similar offenses…Marty always liked to make pepperoni pizza, and I’d politely sigh because I preferred veggies on my pizza. Or, it would go the other way. I’d make lentil soup for the bazillionth time (because it’s cheap and easy), and I knew that Marty was kinda like “Oh, okay.” However, in your case, it seems that troubles run deeper than the superficial marital dissatisfactions that happen on a daily basis (like, oh honey, I am kind of tired of pepperoni pizza, but I still love you anyway and thank you for making it because Claire likes it).

    Your anger is healthy, and justified. Like L’Adelaide says, I wish it were different for you.

    Like

  3. Oh, and as for laundry…maybe you can do the “I fold/you put away” thing? That is, since the stairs are hard on you, why don’t you just fold the laundry and have the other family members put them away? And, have everyone put their dirty laundry by the machines so you don’t have to get them from all the bedrooms.

    I am just thinking out loud, forgive me if this tactic has already been discussed among your kinfolk. xo xo

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  4. Benjamin,
    catching up with you here and dismay as a description hardly begins to speak my horror at the depths of your despair and suffering. I am thankful for your amazing strength in the face of such pain and fear. I sometimes believe you actually do not feel any fear at all, only acceptance, perhaps from years … eons… of being that way. i am glad i have returned again… my life has been hell the past few days, some of the same things you experience, I experience here. i don’t know what to do about it except keep on going….

    i am here for you as you are here for me. ♥

    Like

    • All I can do is thank you, honestly I’m not even sure what to do with myself. I varnished 4 pieces when I came home, made dinner for the family. Drank a beer. (Small) and broke.

      Like

  5. I don’t know how you manage things so well despite the tremendous lack of sleep…from my perspective, it’s amazing to see how much you are doing–even if you think you’re lagging. I am sorry to hear that things are poor on the home front…I wish it were better for you. Sigh. You can’t change yourself to make someone else happy. And besides, you are awesome JUST THE WAY YOU ARE, okay? Just wanted to put that out there for you, m

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  6. oh darlin’, hope you start to feel better and get some sleep. i too suffer this way and the pain drives one insane. i feel for you, my dear B… do take care of you first, everyone and thing second. please? xoxox

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  7. Sweetie, I’m so sorry things are being so rough right now 😦 You are a wonderful, incredibly brave person, and it hurts me to see you’re having a shitty time. Sending you lots of love… xxx

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  8. good eve, dear B.. I am here, suffering, if you are there, suffering… ah pain, the animal that eats your soul but leaves your mind in torment because the neurons won’t shut the ef up. my constant battering lover… XO

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  9. Good luck with your paperwork, my dear friend. Dealing with insurance is vexing even when one is perfectly healthy. Thinking of you today, and much love to you and yours. xo xo

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  10. RE: shame over bad days – I find barfing things onto paper/the computer screen to be very cathartic, cleansing. I’ve always thought that sharing such things helps others know that they are not alone, when they’re miserable. If no one talks about misery, then it’s easy to think that everyone else in the world is happy, and never has bad days. You’re human, you’re justifiably frustrated, and every word you write affirms others’ humanity. So, don’t stop. It’s good for you, and it’s good for others. We who care about you want to know how you really are. We don’t need Happy Sunshine every day.

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    • Thank you for your kindness and caring. Sometimes I feel like I’m on a swing and really with PD I am I can have have a great morning and then 2 hrs later be unable to walk. Very frustrating.
      Big hugs and many thanks
      Always
      Benjamin

      Like

  11. Pingback: Live.,Laugh.,Love…. | Expressions of my life - An evolution of art.

  12. benjamin–
    i am frightened for you. i know the blackness you feel well but am not comfortable writing about it frankly here. i prefer email or phone. you MUST take this seriously and find a doctor to help you with the building feelings of desperation. you MUST.

    you have no choice. i do not know if mental disorders accompany this bloody disease but if so, best to get on top as much as possible. it takes time to find someone who will hear you and be able to treat you and time for meds to kick in. there are many extenuating circumstances as well. you are entitled to feel all you feel.

    i am always here. XO

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  13. I don’t know how you cope Benjamin. I’m struggling with just sciatica. It’s getting me down. But I’m thinking – it’s ok to be down. It’s ok to feel angry and sad and cry, because it is crap, it is awful and it isn’t fair. So don’t kick yourself for feeling like that. But when it gets too dark, reach out to those who care, and reach out to the professionals who can help. Sending hugs and lots of sympathy – my tiny glimpse into your daily pain shows me how hard it must be. xoxo

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    • Thank you Suzy for finding me here very few actually read this section, the place where things aren’t wine and roses. I’ve made appointments with everybody 🙂 gp, neuro, shrink. I’ll beat this, I promise. Just as you will too.
      Hugs
      Benjamin

      Like

  14. I am incredulous and fuming over this:
    Yes M who never by her own choice has now read my journal thanks to some dumb shit at work who obviously doesn’t care about me because they would would have come to me and said wow are things okay. Right when things were getting ironed out.

    i hope M sees thru this ruse and moves beyond her feelings, whatever they are. what did she think you were writing on here? a bit stunning really…

    i am truly sorry that things are so difficult between you. you need each other, not just you needing her. she needs your support too and to have someone come between the both of you and drive a wedge-that’s what it sounds like- is cruel and almost beyond my comprehension. M needs to see the reality behind this type of behavior.

    someone needs to make it known that this is not to be accepted nor stood for. do you have someone who can speak for you other than you? you have little energy for this child’s play that can be so ugly……

    i am glad you made this private. nobody can crack the code that i know of… best that way if there’s people like that in your world who would deliberately try to hurt in that way.

    blessings upon your Sunday, dear friend, and upon your family’s as well. i hope there is peace once again. i hold you in my thoughts, lighting candles and casting spells as i go.

    grrrr…. never mess with the Black Wrathful Mother!
    not kidding… is this a man or a woman who betrayed the both of you?

    xxx

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    • I’m not sure dear friend, M and I had a you can imagine a very long talk after she got over her first reaction which was rage at me. Since she’s had time to actually think about the words I wrote. I’m hoping things will start to settle. As to the jackass at work who made her read it I assume it was a girl.
      Much love
      Benjamin

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  15. B, stay down, drink water with fresh lemon(wishing i could bring one over), keep warm and DON’T watch the news… sigh. Oh, please reblog my post when you can…I think it’s rather important regarding Fukushima Power plants and cesium(mine.. 😦

    much love xoxox

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  16. You know, I miss you wandering your halls, reminding me of hot cocoa…. But at least someone sleeps once in awhile…. I am tad psycho from meds for this bug and will live. The sounds and shadows are almost friends, quite irritating ones that need a new home… Sighs… Goodnight, knight. xox

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    • Yes I to miss wandering the halls with you. My sleep these days is so sporadic. Last night I slept from 9-11 then again from 12-2 now I’m up getting ready to put some color on the walls of the studio. Happy almost Christmas. I hope you heal well and quickly my dear friend.
      Always your knight
      Benjamin

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