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

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

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

Exhaustive Progress

  I would like to start by expressing my sincerest apology to all of my readers.  I had never intended on letting my disability get in the way of providing detailed information and opinions to my readers' awareness.  It's been several days since my last posting.

  Truth be told, I've found myself very drained since my last set of medical appointments.  Last Monday I was scene in Milwaukee to evaluate my nightmares, and then a full day was spent this past Thursday at the North Chicago facility for evaluations in conjunction to my claims.  Progress was made, but was severely taxing on my own level of will.  I've spent several days now over the last week simply unconscious; with a mind to create and write, but no will to do so.  I'm not sure if it's a matter of depression, or simply my body quitting on me.  I'm unsure if I'd even want to know.  If it's depression I'm doomed to adding more mediations to an, already, oversized list.  If it's my body unable to handle the stresses I put it through then it stands to reason that future endeavors may put me out of commission as well...

  I learned that the symptoms I'm exhibiting are those of an individual with PTSD.  They prescribed Prazosin to help ease the nightmares, and want to keep an eye on me to combat my other symptoms if they get overly grand.  Sadly, because my trauma is ongoing, I can not be diagnosed with PTSD, but they'll be treating me as a PTSD patient...  I'm not sure what kind of medical sense that makes, but that's what I've been told.

  The full day of diagnostics on Thursday really took a toll.  I was examined by 4 different professionals and had multiple ex-rays and scans completed.  The doctors seemed honestly baffled that I was denied my initial claim.  The neurologist even told us that his initial write up was of an individual barely able to conduct the basest of human activity.  We were given his name and express instructions to contact him should we be denied another time.  Amy was allowed to be present through every examination except the psychological exam.  This was a major difference compared to previous visits.  There was a certain level of remorse and explanations that they couldn't comprehend how they denied the benefits increase.  I suppose that if things have to go to a hearing level we'll have their doctor's testifying on our behalf...

  I'm hoping that I've caught up on my sleep and have recuperated enough to start my life again.  I'm not overly tired at the moment and think I'll journal a bit (I keep a paper journal) and work on some poetry.  If I manage to stay awake tomorrow then I have plans to finish 'The Three Musketeers' and find a new piece of literature to delve into.  The last few days my vision has been terrible, and I attribute it to the exertions of last week.  Time will only tell.  I'll make plans to have a new post with updated information later in the week...

Thank you all for taking the time to read,
K.M.Shear

Lacking Tools

  I was going to do a follow-up post about my appointment last night.  Amy beat me to it.  If you all don't mind taking a minute to click a link and read about it there, I'll fill you in on some of my views when you get back... (You may also want to follow her blog because she often has entries from a different perspective)

Amy's Blog


  I was privy to some profound outlooks on my disability by my Primary Care doctor.  The most profound was that he didn't believe RSDS/CRPS pain was worse than natural child birth or cancer.  It's been reported, consistently, by people who have had two of the three, but he doesn't agree with the reported findings.  Second, possibly tied with the first statement, was that it 'may be time to seek treatment somewhere else.'  This is a service connected disability, and he's the second medical professional to tell me I may want to look into getting treatment outside the VA....

  Mind you, that this conversation was taking place while I was on the verge of blacking out from my pain and mildly dribbling urine into my pants.  The appointment ended with a prescription for Fentanyl, and the feeling that all the evidence wasn't going to be included in the doctor's notes...

  That's a big kick in the chops, because the VA won't award me benefits due to the lack of solid notation by my doctors...

  So, I'm home, mildly stoned from the high concentration of narcotic (Fentanyl is more powerful than morphine), and trying to organize my thoughts into some form of attack plan for the rest of my day.  God willing, I'll get something done today!  ;)

Thank you all for taking the time to read.
You're appreciated,

Kev

One More Time, With Feeling

  So, for those of you who haven't heard yet, I spent the majority of Wednesday in the ER, and the majority of yesterday trying to recover.  Today is a new day, and I plan on making the most of it; the most of what my pain will let me.
  The ER visit was a 'new' one.  We were headed to the Milwaukee V.A. for an appointment anyway, so I just spent an hour, passing out here and there, in the car to get to the ER versus twenty minutes.  The doctor was great, taking detailed notes and switching me from morphine to dalauted and valium.  I was there for six hours, and they kept coming in every hour or so to shoot me up with more pain killers.  I wish I was closer to the Milwaukee clinic so I could go there for all my ER visits.  They really have a remarkable staff and facility there, and I would highly recommend anyone to go there vise anywhere else.
  Yesterday I felt like I'd been hit by a truck.  My heart rate in the ER was in excess of 170 beats per minute when I arrived.  My leg still feels like I'd been breaking boards with my thigh, foot, and calf.  The prescribed muscle relaxers aren't helping much either.  My muscles are still very knotted up and firing at odd times.  I'm surprised nothing broke mid trip.

  Today is a new day, and I plan to take full advantage of what my body will let me.

The Dust Settles

  So the dust has settled and I'm able to write again.  My family is safe and sound; gifted with parents who love us and took us in.  The Chicago Tribune article caused quite the ruckus, and I already have appointments for re-evaluation in a couple weeks.  Funny how it took months before, but now only takes a day or two...
  I plan on putting up all the ratings material from my case after the appointments and ratings letters arrive.  This can then be used for others in the military with RSD.  They can hand that in and use it as a template for how they'd like to be rated.  God willing, it will make their road an easier one to traverse than ours.  To all of you who have helped me with my cause, my sincerest thanks.
  The room I'm living in is providing me the capabilities to write, and record, my music because I can recline while recording and don't have to sit upright.  Sadly, my RSD seems to be spreading into my right arm and hand...
  My night terrors are getting worse, and I'm finding it harder to wake from them.  It's like being trapped in hell most nights.  Those dreams where you fall, and awake before you land...  I don't wake up and suffer the landing.  I have some medical appointments with a PTSD doctor to discuss these symptoms.  I pray they have an answer...

Wind blows.

Fire burns.

Water runs.

And the earth,

She's rising up,

To meet my feet.

Thank you for reading,

Kevin

Good News, Bad News

  Monday afternoon, and the reporter and photographer came through my front door.  Questions where asked over the camera's clicks; answered, at times, through clenched teeth.  In all the story was told, and I spent the night in pain.  When they left they wanted to get some video, so they scheduled to come back on Tuesday.
  Tuesday morning, bad pain, and the photographer walked through the door.  She set up, filmed, asked questions.  Pain consumed, and it was time to go to the ER.  That poor photographer, she looked so worried, but she was getting the real story.  She was capturing, on film, what real pain looks like.  RSD is the worst pain in the world, worse than cancer or natural child birth, and she was right in the middle of it.
  One of the few things I remember is the look of terror on her face.
  I called my mother, begged her to hurry, to take me to the hospital.
  Time passed.  The reporter took photographs, filmed.  I gasped for breath and struggled to keep my body from tightening against the pain; fought to stay conscious and present while my mind was trying to shut down from overload.  Then I was in the car and rushing for the ER.
  Vomited in my mouth, swallowed, and blacked out twice on the way.  Prayers to God to give me strength; get me through one more time.  Arrival, and a wait for someone to come with a gurney or wheelchair to get me inside.
  They're rough getting me out of the car.  Big burly police man.  He embraces me, keeps me from falling to the ground, and it hurts more than he knows; could understand.  Vitals where checked, and then I was rushed into a large scary room.  'Oh God, why this room,' I thought.  Crash cart, machines that ping, all things medical surrounded me.  My vitals must have been extreme to have put me in that room.  I.V. run, drugs promised, and then I laid in wait, in pain, in prayer.  Minutes ticked by like hours.
  The doctor arrives, asks what is usually done for me.  The nurse arrives and pumps the drugs into my system; first a needle for nausea, then a needle for pain, and lastly a needle to calm.  Minutes pass, and the pain is still pretty severe, so she hits me again with another dose of pain killers.
  In all they dosed me with enough dalauted and Valium to knock over a rhino, and I got off the gurney and into the wheelchair on my own.  Then I wheeled myself to the exit.
  The reporters where there for a lot of the time.  They asked questions, and took photos.  In all, the two women working on my story had been some of the most compassionate and endearing individuals I've met.  Today I will send them a letter or email with all of the gratitude I can muster.
 

6 Million Dollar Me

  One of the methods of controlling RSD pain is with a spinal chord stimulator.  It's a device that's a little bigger than a tic-tac box that pumps an electric current through the sympathetic nervous system.  The theory behind it is that it will disrupt, and distract, the brains ability to focus on the pain.
  At my RSD support group last Sunday I met a woman who had one and it had given her the ability to go back to work as a teacher.  Her RSD was in her arm and hand, but the device was working exactly as it was supposed to.
  My implant doesn't work.  I have all the tingly fun of an implant with all the pain mixed in.  On Monday I met with one of the representatives from Medtronics, the company that made my implant, in the hope that there would be some adjustment that could be made to increase its efficiency.  So now my implant turns on and off, all on it's own, and still doesn't work.  There's nothing worse than having something jolt you while you're busy holding your breath trying to fight through massive amounts of pain.
  This morning I woke up in such a bad state that I couldn't remember the specifics of events that went down over the last week or so.  General concepts were still there, I remember having made a phone call or going to the hospital, but names, faces, and specific topics discussed are all gone.
  There was a funny process that happened then.  First I was scared, then angry, then just depressed.  Now it's still a bit scary, I still don't have any of those memories back, but it's kind of funny.  I always wondered what it would be like to wake up and forget everything that had been happening.  I have a morbid understanding of what that would be like now.  I'm not sure I'm looking forward to the next occurrence though...
  Tonight I'm going to try and work with my bionic implants, and perhaps tomorrow I'll wake up as the next Lee Majors...

Vomit

  I hate throwing-up.  Vomit is not fun.  I have a nasty symptom of chronic pain to share with you.  Real pain makes you nauseous.
  I've spent all day today fighting back the urge to empty my stomach, and as the pain gets worse the nausea gets worse.  Last night a spent an hour praying to the porcelain god; praying to just vomit and get it over with.
  Anyone have a good cure for pain induced nausea?  Mind you that smoking a joint is out of the question because I can't afford to lose my veteran's medical benefits...

  Last Thursday I joined the Marine Corps League.  What a long, painful ordeal.  It was worth every bit of pain though.  It's nice to be surrounded with people who live their lives like I do; like we never left the corps.  It was overwhelming to hear everyone offering to help their brother out.  Why didn't I do this a long time ago?  I'm not sure, but I do know that I've gotten into a huge network and have some major players helping me out now.  I'm starting to believe that it's just a matter of time before I finally have the support I need to keep my family moving forward.
  I started to work on a new song, but I'm having trouble lately just holding a guitar.  Yesterday I played for about an hour or so, and today I tear up if I try to put anything on my thigh.  Perhaps tomorrow will grace me with a reprieve so I can get some more work done on my recording.
  I posted my song up on YouTube.  I thought that if people shared it that it may take off and get into the ears of someone who could help me earn my keep through song writing.  It's only had 6 views.  You can take a listen HERE.  Please leave a comment to let me know you where there.  And if you appreciate the work please take the time to share the link with others.
  Tonight I'm going to start writing.  I'm not sure what, but I'm starting tonight.  I've been failing as a musician, failing as an artist, so now I'll see how well I bomb at being a writer.
  Thanks for reading, and I'll be back tomorrow with more!

One Night's Good Sleep

  Often people don't realize that chronic pain leads to sleep deprivation.  I'll go weeks praying for just one nights good sleep.  My prayers where finally answered last night.  I've not felt this alive in months!  I think one of the reasons I slept so well is because my dreams where so incredibly vivid and surreal...
  I was thinking about posting the dream here, but it covered a period of about 3 weeks and would be far too long, so I'm going to try to write it up and post it as an attachment later this week...
  Sorry for the short post, but I'm entertaining having my weekends be light posting sessions with heavier, and lengthened, posts during the week.
  Thanks for reading, and I'll have a healthy post for you all next week!

Memory Loss

So I'm sitting here trying to figure out what went wrong for the blog chat, and now I'm realizing that it isn't happening until tomorrow...
The worse thing about pain is how it destroys your memory capacity.  Some times it's so overwhelming you get dates, days, times, names, everything mixed up.  The event invitation is for today, but on Kaps Blog it states it will be tomorrow, Tuesday...
For everyone that showed up today, I apologize for the mix up.  Had I been more focused, and in better working capacity, I may have caught this sooner and got it rectified.  Seems most of my days are 'hind site' kinds of days lately.
I hope those of you reading will take the time out of your schedules to participate tomorrow.  And in the mean time feel free to post up any questions or remarks here.  It's always nice to have a dialogue about my experiences.