This post will more than likely be dark, disturbing, and contain profanity. I will not be upset if any of my readers stop reading here...
I've been stripped of my ability to drive, go for a walk, pour a glass of milk or water, shower daily, shave daily, fix my own meals, and clean my area of living. This week I've been stripped of the desire to do anything. No postings, just a few lines here and there in scattered journals, my personal journal left empty for too long. And now I'm finding myself angry. I have no where to aim my venom, and have been lashing out in every direction. I simply want to yell 'FUCK' into the wind and let it find the ears of everyone.
Three days have passed since I made an inquiry of the VFW. They still haven't called me back. In a perfect world those agencies that render the hopeless veteran homeless should be homeless as well. I'm willing to bet that they'd all work a bit faster, act in a more diligent way, if they found their shelter missing every time they played these games. For as much drag time that they have, you'd think they were disabled too. Could you imagine if they had to work while suffering with pain that blinds; renders the victim feeble minded. We showed Illinois the governments bare ass, caught them with their pants down, and there still is little progress made.
Perhaps, if the nation (or the state) had to sacrifice like our service members, they'd have a different perspective. Perhaps if they all had to spend just a few days crippled and in pain, they'd never let a transgression of this magnitude to go on.
I still haven't heard from my mayor. He didn't have anyone running against him... again... Where does a non-caring windbag have a secure job where he doesn't have to do anything? Crystal Lake, Illinois. I've often spent time thinking about causing him as much pain as I suffer with and watch him. I think I'd actually laugh. I honestly don't think the bastard has had one day of adversity in his whole life.
I've been lectured about respect, and I live in a place where I don't feel that I'm offered any. My door is constantly opened and shut while I rest, my work is interrupted when I'm actually able to accomplish anything, my belongings and my safe haven are often trashed. Where is the respect? Today I rose to requirements stemmed from individuals simply not wanting to follow simple directions, and now I can't rest because there's voices in my room (yes, they belong to people) that are annoying. I have to ask for permission to see my daughter, but no one asks me my permission to have their friends over. They simply don't care what condition I'm in, what I suffer with. The rules only apply to myself, my wife, and my child. They're one-sided and ignored when they don't fit the life style of those who are housing us.
Now most people will be up and arms at this statement. I can hear the comments already. "It's their house, and they can do that," "They don't have to follow rules if they're in place for only you," etc.
Perhaps the voices of opposition are right.
So with no regard to me, life moves on in whatever way it wants here. It seems like those who have given us shelter don't feel like they need to bother, like I don't need to be. That's it...
I feel like I don't need to exist; as if there is no regard to me and my situation. I feel like the government has swept me into a corner, and my providers of shelter have completely disregarded what I go through. I feel like a small fleck of dirt; tired, and drawn thin, from the constant sweeping into corners. I find my breath hard coming, and the pressures of trying to demonstrate my existence slowly compressing me into nothingness.
I'm tired, of just about everything......
FUCK
Thursday, February 24, 2011
Saturday, February 19, 2011
Hurry Up and Wait
Ah, the old axiom of the Marines, 'Hurry up and wait...'
As I had previously shared, I've been told to utilize new medications. I haven't started the new regimen yet because they need to be prescribed by my Primary Care. I won't see him until next Friday. In the mean time I'm expected to continue with current medications.
The real exacerbation is the amount of money wasted on these older drugs.
Rather than simply send me partial fills they've sent me full month supplies of all of my old medications. This means I'll have near three weeks worth of medications to throw away. What a waste.
This week I'm going to try and adhere to a schedule to see if this helps mitigate my symptoms and boost my productivity. My current approach doesn't seem to be helping any, may as well try something different.
So I'm scheduled to awake at 8 in the morning (this morning I actually woke at 7:30), and have scheduled time frames for different works. I hope this gives me the chance to take a little more control back...
We received a letter in the mail, from my attorney, with a few attachments. The first attatchment was a request of acknowledgement in regards to the date, time, and location of the hearing. I had signed and sent in this same form several weeks ago when it was sent to me directly. The second was a request for all my current medications. This information is all in my medical documentation which they are supposed to have a full copy of. The VA even prints a medications page, which lists all medications prescribed over the service members life time. The last attachment was a request for a work history. Now, when I filed the initial claim I did a detailed work history, and for my appeal I did another detailed work history, what the hell do they need a third one for? What a complete waste of time.
The letter itself actually asks me to bring any pay stubs from work I had done during the course of my disability. Amy freaked. She felt this was a mark of ignorance on the attorney's part. I'm starting to wonder myself now. I had explained that it was probably a simple form letter they send to every client. Perhaps I should give them a ring on Monday, if I remember...
The Chicago VA medical center finally got me in for the scan of my back that was requested by the compensation and benefits doctor. My case has been held up for three weeks because of their inability to pick up the phone and give me a call back to schedule the appointment. I finally called the advocate and explained that this was exactly why I have all my treatment done in Milwaukee. I doubt they'll find anything. More than likely I'll get a phone call from the doctor asking me what is in my back, despite the fact we explained to him that I had an implant. I'll let you all know if that's the case so we can all enjoy a good laugh.
Thank you all for taking the time to read my thoughts,
K.M. Shear
As I had previously shared, I've been told to utilize new medications. I haven't started the new regimen yet because they need to be prescribed by my Primary Care. I won't see him until next Friday. In the mean time I'm expected to continue with current medications.
The real exacerbation is the amount of money wasted on these older drugs.
Rather than simply send me partial fills they've sent me full month supplies of all of my old medications. This means I'll have near three weeks worth of medications to throw away. What a waste.
This week I'm going to try and adhere to a schedule to see if this helps mitigate my symptoms and boost my productivity. My current approach doesn't seem to be helping any, may as well try something different.
So I'm scheduled to awake at 8 in the morning (this morning I actually woke at 7:30), and have scheduled time frames for different works. I hope this gives me the chance to take a little more control back...
We received a letter in the mail, from my attorney, with a few attachments. The first attatchment was a request of acknowledgement in regards to the date, time, and location of the hearing. I had signed and sent in this same form several weeks ago when it was sent to me directly. The second was a request for all my current medications. This information is all in my medical documentation which they are supposed to have a full copy of. The VA even prints a medications page, which lists all medications prescribed over the service members life time. The last attachment was a request for a work history. Now, when I filed the initial claim I did a detailed work history, and for my appeal I did another detailed work history, what the hell do they need a third one for? What a complete waste of time.
The letter itself actually asks me to bring any pay stubs from work I had done during the course of my disability. Amy freaked. She felt this was a mark of ignorance on the attorney's part. I'm starting to wonder myself now. I had explained that it was probably a simple form letter they send to every client. Perhaps I should give them a ring on Monday, if I remember...
The Chicago VA medical center finally got me in for the scan of my back that was requested by the compensation and benefits doctor. My case has been held up for three weeks because of their inability to pick up the phone and give me a call back to schedule the appointment. I finally called the advocate and explained that this was exactly why I have all my treatment done in Milwaukee. I doubt they'll find anything. More than likely I'll get a phone call from the doctor asking me what is in my back, despite the fact we explained to him that I had an implant. I'll let you all know if that's the case so we can all enjoy a good laugh.
Thank you all for taking the time to read my thoughts,
K.M. Shear
Tuesday, February 15, 2011
Page Changes, Tiredness
For those of you who haven't noticed, I've added a couple new pages to my blog. You can reach them at the top of the page. The first one is a treatment log, and the second one is images, articles, and videos that directly relate to being a veteran with RSD. I have also changed one of my links to Rebecca's Whims. I felt inclined to add this link because she makes herbal pillows that really do help with relaxation and muscle fatigue, things I know others with RSD and chronic pain are very familiar with. That's about it for page updates. Oh, and I've been hearing many people comment that there's no place to comment on my page. Please make sure you're in the blog entry by clicking its title and I assure you there will be a place to comment.
The weekend was a busy one, and I've been paying for it dearly over the last couple days. I've been in a bit of a daze and fading in and out of reality. I'm sure this would be a fun thing if I was on vacation and wanted to catch up on sleep, but it's simply what life is now when I attempt to exert myself. Today has been a bit of a recovery day as well, but I think the worst is over and I'm ready to sit down and write some new poems and short stories, as well as work on other projects I have going. Please follow the link to the right to Shear's Shorts to read some of my work and listen to my music if you have the time and inclination to do so.
Sorry this is such a brief entry, but I assure you there will be plenty to write about over the next few weeks with my Social Security trial coming up on the 3rd of March, and my medical exams having been completed for the Veteran's Benefits claim.
Thanks for stopping by,
K.M. Shear
Saturday, February 12, 2011
Medicinal Updates
My appointment with the Pain Clinic was yesterday morning. The journey to Milwaukee has left me reeling, but it was a productive one.
I'm not sure if I have discussed the difficulties I have with different modes of transportation, so I'll explore that here and get back to the medicinal updates to close this entry.
Prior to my RSD outbreak I would travel by train to Chicago on alternating weekends to take custody of my daughter for visitation. I can no longer ride a train due to the severe increase of pain caused by the seat designs, vibrations during movement, and overall roughness of the trip. My visitation has been nearly reduced to 0, and I only visit with my daughter when I am able to find vehicular transportation to Chicago, and then it is only when she has large portions of time off of school.
So trains are no longer a possible form of transportation.
My mother owns a Subaru something or other, and it's seat design is a nightmare for an individual with RSD in a lower extremity. The sides of the bottom portion of the seat have large pads that stick up roughly two inches from the bottom pad. When sitting in these seats those side cushions inevitably bump the leg and put an undue pressure upon it. This causes severe pain that can take several days to recover from.
My mother is the individual who takes me to roughly half of my appointments.
Other vehicles that don't have elevated sides to the bottom cushion are fine as long as they have a decent suspense system. If the shocks are overly stiff it causes rough jolts that severely increase my pain.
Back to medications.
The doctors are putting notes into their system requesting changes to a majority of my medications. Instead of Fentanyl, they're requesting a prescription for Methadone. Vinlafaxin (or however it is spelled) will be replaced by Cymbalta, and they're prescribing a powerful muscle relaxant for all my muscle spasms...
As the medications come in I'll update my medications page.
I have to admit that, despite the increased pain, I slept well last night with zero nightmares. Very exciting!
Thank you all for taking the time to read my thoughts.
Sincerely,
K.M. Shear
I'm not sure if I have discussed the difficulties I have with different modes of transportation, so I'll explore that here and get back to the medicinal updates to close this entry.
Prior to my RSD outbreak I would travel by train to Chicago on alternating weekends to take custody of my daughter for visitation. I can no longer ride a train due to the severe increase of pain caused by the seat designs, vibrations during movement, and overall roughness of the trip. My visitation has been nearly reduced to 0, and I only visit with my daughter when I am able to find vehicular transportation to Chicago, and then it is only when she has large portions of time off of school.
So trains are no longer a possible form of transportation.
My mother owns a Subaru something or other, and it's seat design is a nightmare for an individual with RSD in a lower extremity. The sides of the bottom portion of the seat have large pads that stick up roughly two inches from the bottom pad. When sitting in these seats those side cushions inevitably bump the leg and put an undue pressure upon it. This causes severe pain that can take several days to recover from.
My mother is the individual who takes me to roughly half of my appointments.
Other vehicles that don't have elevated sides to the bottom cushion are fine as long as they have a decent suspense system. If the shocks are overly stiff it causes rough jolts that severely increase my pain.
Back to medications.
The doctors are putting notes into their system requesting changes to a majority of my medications. Instead of Fentanyl, they're requesting a prescription for Methadone. Vinlafaxin (or however it is spelled) will be replaced by Cymbalta, and they're prescribing a powerful muscle relaxant for all my muscle spasms...
As the medications come in I'll update my medications page.
I have to admit that, despite the increased pain, I slept well last night with zero nightmares. Very exciting!
Thank you all for taking the time to read my thoughts.
Sincerely,
K.M. Shear
Thursday, February 10, 2011
Spills and Misplaced Thrills
I'm having a rough day today...
Currently, I have a room that is set up to be my safe haven. It was put together to offer me a certain level of comfort while affording me the maximum opportunity to work on my writing, art, and music. During the evening hours I enjoy hosting my wife and child in the room. We watch television, play video games, chat, etc. But it seems as if my safe haven is being left in greater disarray with each morning I wake. Some mornings are better than others, and I'm not too terribly upset about it. I understand that my wife comes home from long days in the office and just wants to unwind, and let's face it, picking up after a 3 year old is not relaxing.
My wife and I have already had a long discussion about the topic, and she was very understanding. Amy never ceases to amaze me in her ability to hear what I'm saying.
So, back to my bad day...
This morning my little monster woke up early and joined me in my room to watch children's shows. All morning he was trying to poke my feat, and, on more than one occasion, he caused me a great deal of pain. This was followed up by my mother's desire to protect her investment in her window trimming.
Throughout the evening hours a large amount of moisture collects at the base of the windows and causes warping and mold growth on the wood trimming. Every morning she comes in to wipe down the trimming and, some days, to remove the trimming to clean. Today, while she was going through her routine, she moved a can of soda onto the swivel portion of my desk. With all the drugs I'm on, and my lack of solid sleep, I tilted the desktop and poured soda all over my keyboard, trackpad, floor, etc. I was devastated.
At some point my son had decided that he wanted to play one of his games which he could not locate. I had assumed that he had moved it somewhere and couldn't remember where he had placed it. I found the racing game along the chair my wife likes to sit in while she's immersed in her social networking. She had set it on her table and somehow it fell off.
So my morning hours have been invested in cleaning, picking up left overs from last night, and walking round the house trying to find a copy of "Sonic All-Stars Racing". I'm exhausted, in a grand amount of pain, and in a funk.
For those of you reading who have a loved one that suffers with chronic pain or RSD, please realize that the more ordered their environment is, the less pain they have to suffer, and the more productive they can be.
On another note; I received a letter from the judge that will be overseeing my social security hearing. It was addressed to the apartment we had been evicted from. I had informed my attorney of the eviction on multiple occasions, and had given them the new address, but it seems that they didn't take the time to inform the department of human services... I suppose I'll have to call them at some point today.
I'm sure that my VA claim is being held up because the North Chicago radiology department hasn't called me back to set up the appointment. I think I'll be talking sternly to them soon here...
Sorry this entry has been a bit of a downer, but I think the messages it sends had to be written out.
Thank you all for taking the time to read,
K.M. Shear
Currently, I have a room that is set up to be my safe haven. It was put together to offer me a certain level of comfort while affording me the maximum opportunity to work on my writing, art, and music. During the evening hours I enjoy hosting my wife and child in the room. We watch television, play video games, chat, etc. But it seems as if my safe haven is being left in greater disarray with each morning I wake. Some mornings are better than others, and I'm not too terribly upset about it. I understand that my wife comes home from long days in the office and just wants to unwind, and let's face it, picking up after a 3 year old is not relaxing.
My wife and I have already had a long discussion about the topic, and she was very understanding. Amy never ceases to amaze me in her ability to hear what I'm saying.
So, back to my bad day...
This morning my little monster woke up early and joined me in my room to watch children's shows. All morning he was trying to poke my feat, and, on more than one occasion, he caused me a great deal of pain. This was followed up by my mother's desire to protect her investment in her window trimming.
Throughout the evening hours a large amount of moisture collects at the base of the windows and causes warping and mold growth on the wood trimming. Every morning she comes in to wipe down the trimming and, some days, to remove the trimming to clean. Today, while she was going through her routine, she moved a can of soda onto the swivel portion of my desk. With all the drugs I'm on, and my lack of solid sleep, I tilted the desktop and poured soda all over my keyboard, trackpad, floor, etc. I was devastated.
At some point my son had decided that he wanted to play one of his games which he could not locate. I had assumed that he had moved it somewhere and couldn't remember where he had placed it. I found the racing game along the chair my wife likes to sit in while she's immersed in her social networking. She had set it on her table and somehow it fell off.
So my morning hours have been invested in cleaning, picking up left overs from last night, and walking round the house trying to find a copy of "Sonic All-Stars Racing". I'm exhausted, in a grand amount of pain, and in a funk.
For those of you reading who have a loved one that suffers with chronic pain or RSD, please realize that the more ordered their environment is, the less pain they have to suffer, and the more productive they can be.
On another note; I received a letter from the judge that will be overseeing my social security hearing. It was addressed to the apartment we had been evicted from. I had informed my attorney of the eviction on multiple occasions, and had given them the new address, but it seems that they didn't take the time to inform the department of human services... I suppose I'll have to call them at some point today.
I'm sure that my VA claim is being held up because the North Chicago radiology department hasn't called me back to set up the appointment. I think I'll be talking sternly to them soon here...
Sorry this entry has been a bit of a downer, but I think the messages it sends had to be written out.
Thank you all for taking the time to read,
K.M. Shear
Tuesday, February 8, 2011
In A Puddle
Over the weekend my family celebrated my son's third birthday. It was a wonderful experience watching the children play and eat. We went to the Rain Forrest Cafe in a nearby mall. We rented a wheel chair for me so that I could visit some of the stores and get around easily. The trip was overly painful and exhaustive, but worth every minute of suffering.
I was very pleased with how quickly I recovered, and in my excitement of feeling mildly 'ok' I asked my mother to take my son and I to the bookstore yesterday. During the adventure my son misplaced his hat, and my mother went to look for it while Lincoln and I browsed the kids area.
I turned round and Lincoln was gone. He had run off to play in the toy area. The poor child looked up at me and said, "I peed." His eyes were pleading, and his little hands were stretched out as if he was asking me to pick him up and take him away to a safe place. All I could do was stand there and hold his hand while we waited for his grandmother to come and help get him cleaned up. I felt I had failed as a parent because of my disability.
Today the pain is very severe. The combination of the trip to the mall, and the trip to the bookstore, has left me reeling in agony. Everything burns on my right side, and all I can think to do is hope I pass out sooner, rather than later, and pray when I come to the pain has subsided. I'm not at a point were I may have to go to the hospital, but if the pain continues to grow I may end up there at some point. Time will tell I suppose.
I'm up to the full dose of the PTSD medication I was prescribed, and I'm not sure it's working. I'm still having nightmares, but I'm waking up in the midsts of them very startled. If, in my dream, I'm dropping something, I awake grasping for it. The sudden jerks at the time of awakening have caused pain levels to be aggravated due to accidental bumps of the limbs during the thrashing about. I'm also still very jumpy and sensitive to loud noises.
When anything gets loud I start to loose my patience, grind my teeth, and if it's sudden enough I find myself curling away to protect the parts of my body that aren't afflicted with RSD. I have no control over these reactions, and, believe me, I've made several attempts to minimize the behavior with no success.
Thank you all for taking the time to read,
K.M. Shear
I was very pleased with how quickly I recovered, and in my excitement of feeling mildly 'ok' I asked my mother to take my son and I to the bookstore yesterday. During the adventure my son misplaced his hat, and my mother went to look for it while Lincoln and I browsed the kids area.
I turned round and Lincoln was gone. He had run off to play in the toy area. The poor child looked up at me and said, "I peed." His eyes were pleading, and his little hands were stretched out as if he was asking me to pick him up and take him away to a safe place. All I could do was stand there and hold his hand while we waited for his grandmother to come and help get him cleaned up. I felt I had failed as a parent because of my disability.
Today the pain is very severe. The combination of the trip to the mall, and the trip to the bookstore, has left me reeling in agony. Everything burns on my right side, and all I can think to do is hope I pass out sooner, rather than later, and pray when I come to the pain has subsided. I'm not at a point were I may have to go to the hospital, but if the pain continues to grow I may end up there at some point. Time will tell I suppose.
I'm up to the full dose of the PTSD medication I was prescribed, and I'm not sure it's working. I'm still having nightmares, but I'm waking up in the midsts of them very startled. If, in my dream, I'm dropping something, I awake grasping for it. The sudden jerks at the time of awakening have caused pain levels to be aggravated due to accidental bumps of the limbs during the thrashing about. I'm also still very jumpy and sensitive to loud noises.
When anything gets loud I start to loose my patience, grind my teeth, and if it's sudden enough I find myself curling away to protect the parts of my body that aren't afflicted with RSD. I have no control over these reactions, and, believe me, I've made several attempts to minimize the behavior with no success.
Thank you all for taking the time to read,
K.M. Shear
Friday, February 4, 2011
The Full Dose
Last night was the first time taking the full dose of my PTSD medication. I haven't seen much of a change in my dream patterns. It's interesting that I now wake up mid dream though. Last night I had a dream that my son was falling through an elevator shaft, the door had closed on my leg, and I was reaching for him desperately. I woke up flailing and in tears. The flailing doesn't seem to be helping me with my pain.
I have hopes that I'll be able to clean up a poem I began work on during my appointments last week. I wrote it in the waiting area. I hate that area. It's sterile, white, and wreaks of mental institution. I'm only mildly psychologically impaired and I felt like I had been committed; can't fathom what this would be like for an individual breaking at their psychological core. The room is complete with old fashioned television broadcasting some form of white trash project, unfinished puzzle on the single round table at the back of the room. The windows are covered with a metal mesh screen, and the men in white lab coats drift here and there collecting their next subject with the mild call of a name. You can feel the discomfort of others as they glance about wondering what form of hell they just stepped, or wheeled, into.
I set out to write a journal entry, but the only thing that came to mind was poetic in nature. I hope I can finish it and post it on my Shear's Shorts site. There's a link to the right that you can click to get to it.
My Fentanyl patches seem to want to only stick to my fore arms. I've tried to get them to hold on for their three day period in other places, but to no avail. I'm sure the appearance of the patches on my arms makes doctors question my use of them. Even when I try to explain they turn a distrusting eye in my direction. Since the appliance of the patches I haven't needed to be seen in an Emergency Room, and I think that should be a check mark in the 'win' column, but my sleep schedule is wrecked, if not non-existant, and some days I feel an unstoppable drag pulling me into sleep state while other days I can't seem to calm down.
Enough droning for one morning. I have words to craft.
My humblest appreciation to those of you still reading,
K.M. Shear
I have hopes that I'll be able to clean up a poem I began work on during my appointments last week. I wrote it in the waiting area. I hate that area. It's sterile, white, and wreaks of mental institution. I'm only mildly psychologically impaired and I felt like I had been committed; can't fathom what this would be like for an individual breaking at their psychological core. The room is complete with old fashioned television broadcasting some form of white trash project, unfinished puzzle on the single round table at the back of the room. The windows are covered with a metal mesh screen, and the men in white lab coats drift here and there collecting their next subject with the mild call of a name. You can feel the discomfort of others as they glance about wondering what form of hell they just stepped, or wheeled, into.
I set out to write a journal entry, but the only thing that came to mind was poetic in nature. I hope I can finish it and post it on my Shear's Shorts site. There's a link to the right that you can click to get to it.
My Fentanyl patches seem to want to only stick to my fore arms. I've tried to get them to hold on for their three day period in other places, but to no avail. I'm sure the appearance of the patches on my arms makes doctors question my use of them. Even when I try to explain they turn a distrusting eye in my direction. Since the appliance of the patches I haven't needed to be seen in an Emergency Room, and I think that should be a check mark in the 'win' column, but my sleep schedule is wrecked, if not non-existant, and some days I feel an unstoppable drag pulling me into sleep state while other days I can't seem to calm down.
Enough droning for one morning. I have words to craft.
My humblest appreciation to those of you still reading,
K.M. Shear
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