Paintings for Pain

A few months ago, I received an email telling me that the painting that was inspired by my story, would be hung in Christiaan Barnard Hospital in South Africa. I was hoping to be able to attend the unveiling at the fundraiser they had in Maryland but with a basement and foundation deciding that I didn't have enough water in my basement and more behind the scenes garbage than I care to divulge, I couldn't come up with the time or money to attend. Seeing that life kicked me on the backside again, Mr. Anthony Chaudry, the coordinator of the event, was kind enough to send a digital copy to me, I have to say, Alana did an excellent job on this piece and I can't thank them both enough for including me in this project. I get to see the paper printout at work, just an 8x11 on copy paper, but I like to look at it once in a while, makes me feel like I have my friends and family with me, no matter how long it's been since I saw them last. 
Another really nice thing about this whole experience, as you might have seen if you read the last post, it made me think, I had to stop and take a minute to reflect on those closest to me. I may not have 500K+ FB friends, but those friends I do have, I would give my life for. Each color of the painting represents the people I spoke about in the last post (Beth, Brandon, Kyle, AJ and Rach) and their impact on my life. Alana sent one brush for each color, each with the name of the person the color represented. Below is the email she sent, explaining the painting. If you have not read the previous post, doing so might make it easier to follow.
"My paintings stimulate the senses in order to share an experience.  I do not remember in words, but in feelings.  I use pictorial devices to create sensations in the viewers that allow me communicate my struggles, the experience of overcoming struggles, my connections to others, wonderful moments, as well as profound experiences.  When I was asked to participate in Painting for Pain I knew this was a project I could not turn down.  Pain is such an intense sensation, but I truly had no idea of the pain so many people are living with on such regular basis.  Working with Jim Jacobs has opened my mind to a disease that is truly horrific and a people that are truly courageous.  “Strength Amidst the Rain” is my first painting in which I got to use paint to share the extreme sensations of another person.  Jim continuously feels what a debilitating pain is too often and yet he finds within himself, and from those that care for him, a strength and courage to persevere and live a meaningful life.

In communicating with Jim and reading his blog I was able to get a sense of what it feels like to live with RSD/CRPS.  He also shared with me information about his friends and family who have supported him since he was diagnosed with this disease.  This information Jim so candidly shared with me was pictorial associations that describe what he feels or associates with each person.  I used this to create a painting that stimulates in others the sensations that Jim experiences.  The ground of the painting is a layering of a deep, dark, calming blue and vibrant orange that creates a deep space that allows the form to inhabit weightlessly.  The ground is a dark foundation built from the support of the many years Jim has known Brandon and the Reflex Sympathetic Dystrophy Syndrome Association.  The form is a culmination of Jim’s pain building and swirling around him like gray skies and the colors and shapes that communicate the physical and mental feelings of his support system; Rach, Kyle, AJ, Brandon and Beth.  The larger portion of the form is the pain associated with Jim; at each end is the strength that is breaking through at one end, Jim’s courage, and taking over at the other.  In the solid colors there is clarity of mind that is pushing out the fog of the pain.  The center round, blue shape is associated with AJ, his rock.  Surrounding this form is his association with Rach.  She is the web that holds everything together and the persistent strength that is breaking through the pain.  Kyle as a baby set the tune for Jim’s drive to help others.  The light blue shapes are associated with leading him down this path.  The yellow form is the sensation Jim feels about Beth and is placed in the center as an internal friend." 

 An update on the VA and where we go from here:

My doc has been a great advocate, he has entered the fifth consult to get me to one of the CRPS treatment centers. We have to keep coming up with something new every time. I sent a letter to the chief of medicine toward the end of November, the acting chief has contacted my doc and let him know that she is now working on getting me to someone that knows what they're doing, and can do it in a somewhat reasonable time frame. I feel like since I've been waiting and fighting so long, I'm putting so much hope in this Ketamine thing, that if it doesn't work, I'm hosed. With this disorder, one shouldn't put too much hope into anything, but short of surgery, which is almost always the worst option, we haven't come across too many other options. I don't know if it will work or even happen, but I need something to keep me drinking water, driving on.

One thing I can say, without a doubt, is that my cold tolerance has dropped severely. I love this time of year, but these low temps have been murder, I don't remember it being this bad last year. Over the last week, I've noticed the third, fourth and fifth toes are becoming even more painful and tender, was really hoping that wasn't possible. I don't know if it's due to having fewer 'good days', or if it is just the next level I should expect to be the new baseline but distracting myself has become insanely difficult. Considering what this disorder is, I have convinced myself to begin the titration of most of my meds, if the pain is all in the vast emptiness of my head, I don't need to make the other organs suffer for it, maybe my memory will see an improvement, probably not, but who knows. 

Hope everyone has had and continues to have a happy jollyday season. 

In the words of Aerosmith-"So, from all of us at Aerosmith
To all of you out there, wherever you are.
Remember- the light at the end of the tunnel
May be you. Goodnight!"

Questions from Alana

Alana Bergstrom is an artist that the RSDSA has paired me with for a fundraiser to promote awareness of RSD/CRPS. To help her come up with ideas for her painting, she asked me to answer a few questions. This long winded ramble is how it looked. 

Don't forget to check out her page-alanabergstrom.com

Hi Alana,

I'm going to put this p.s.at the top to apologize beforehand. Like I said before, and as you will see below, I get a little long winded. If somehow,  I managed to ramble on like I did and wasn't able to provide what you were asking for, let me know. Since I keep having problems keeping myself on task with this, I wanted to send what I have so far and will continue to work on the rest. Thanks for your patience.

Jim

Of course I'm curious about how you hurt your foot, but you never
mention it and if it's too personal I won't ask you to tell me.  How
long were you in the military?  What was your rank?  Where were you
stationed?  What was your main duty?

Don't worry about asking anything that is too personal, I can't come up with anything that will offend me. As far as I can think back, I wanted to be in the military, both of my grandfathers were in. My paternal was army and maternal was a Marine. Of course, I had the dream of flying off of a carrier and seeing the world, I turned into a lazy student and the hopes of the Annapolis disappeared and put off entering the military. Being the foolhardy ass and swayed like most everyone after 9/11, I decided to reconsider joining. I went to Knox as a Cav Scout, hoping to be one of the lucky ones to move up in the ranks quickly and then move to an MOS with a little higher survival rate. I was unlucky enough to break my foot while on a pre-deployment night training. For a few weeks I felt some pain on the outside of my foot, but ignored it so I wouldn't miss out on anything. Turns out, I had stress fractures that lead to the break when I landed with the middle of my foot on a tree branch. I was assigned to work in the processing office after that and missed the boat to Afghanistan. I was partnered with a guy and we were assigned the task of creating spreadsheets for personnel records and transferring all the records of everyone in the Bn to electronic record. That was not what I would consider a good time. I only got to stay 10 months, they wouldn't give me a profile for the run, and I couldn't heal fast or well enough to run the full 2 miles.

You have written about your wife Rach, children Kyle and AJ, and your best
friend Brandon.  When you think about each of them, what colors or
shades of colors do you associate with them? If you were to close your
eyes and think about each one individually what comes to mind?  Are
there different shapes, lines, or textures that come to mind?  Are
some of the images sharper or softer than others?  Can you describe
their relationship and the impact they have on your life with words
that could conjure up an image or mood in someone's mind?  Are there
others that have been there for you and supported/helped you along the
way that you would want added to your story/experience?

When I think of Rach, I picture her in her albatross colored Maggie Sottero "Ambrosia" wedding gown and her HOT pink shoes. I had to mention the designer's name, she was very adamant about finding a gown from her line and when she finally got one, she was so excited, she could have lifted the spirits of even the most depressed person in the world. She was amazing the day of the wedding, I couldn't believe she was there to marry me. I would have to say that a box is the shape I most associate with her, more precisely, the red cherry stained wine box I made for the wedding. It contains a bottle of Provincia di Pavia Moscato, the first and only wine I have been able to find that she likes, along with letters from both of us to the other and is to be opened on our 5th anniversary. Neither of us fans are of traditional roses, so I get her Calla Lilies, they're very soft, delicate flowers. She has been a tremendous supporter throughout this experience. Whether researching different treatments, making sure I have what I need or simply being there, she has shouldered a heavy burden.

I feel for my kids. They were already going through enough with the changes at their mother's house, and having to deal with a split family lifestyle. AJ is my strong, 'helper' of the family, any time something is needed, she is quick to volunteer. The color of the blue piece from the game 'Sorry' is what comes to mind when I think of her. She will fight her brother for the blue pieces every time. She's like a little monster, do not try to take her things or hurt her family. Since she has a slight tomboy side to her, I think of a sphere, representing soccer, baseball and basketball, she always wants to play one of the 3. Kyle was my reason for changing my lifestyle. When I think of him, I see him in his incubator wearing his baby blue sleeper and hat that kept falling off because it was way too big for his premie head. He spent his first 2.5 weeks in the NICU, that was one of the scariest times of my life, but it was also the first time I had ever considered becoming a nurse. He still likes baby blue and it looks good on him, so I still associate it with him. It's funny, he has my music taste; metal, hardcore, punk, and he really likes playing violin, I played viola, so thinking of him makes me think about the treble clef. Both kids have stepped up and help out quite a bit, even though it seems trivial, I'm glad they help clean, it takes a bit of the load off of Rach.

What can I say about B? He's my best man, he's been a brother to me for almost 20 years. The kids call him Unky B, I call on him for anything and he knows he can do the same with me. B is a huge horror fan, in fact he loves Friday the 13th so much, his FB name is Brandon Voorhees. Naturally, I see him wearing Jason's hockey mask, playing guitar. He's also a rock star, he's actually out on tour out east right now playing for a band called LionHeart. He's been to Europe, Canada, pretty much all over the U.S. and might be going to Asia sometime soon. I hate him for all of that. He is such a charismatic guy, which is most likely the reason he keeps getting asked to go out on tour with different bands. The only people that don't like him have to be jealous of him, he's that guy that has a personality that is impossible to dislike. B was able to expand my musical and entertainment tastes. I am a stubborn person, he calls me a grouchy old man, I hadn't been exposed to much other than Metallica and other radio played music. Once I broke down and listened to his suggestions, I was hooked. That's his thing though, he understands his friends and knows what might be a good thing for them. Being that he's always been a metal head, I only see him in black clothes, but his personality to me is a calm, dark blue because he has always been someone I can confide in, and know that I will get an honest answer from him when it might be hard for others.

My friend Beth has been a wonderful friend to have. We met during one of our prereq classes at Metro, the community college we went to. We partnered up and became friends immediately. When we got to our first run in the LPN classes, we were again able to partner up and have fun. Circumstances at home caused her to have to leave the nursing program, shortly after that, I started having heart issues and had to take time out also. We ended up getting back in the same class and it couldn't have turned out better for me. Home life was boiling, leading up to my separation and later divorce. She was always a good ear, there was always a huge smile on her face when we saw each other. Lucky for both of us, if one of us struggled with a class, the other was able to help the other. We did this throughout the RN program as well. I ended up in the hospital again at the end of the second of the 3 quarters that the RN program ran. She helped me get case studies and extra work while I was in, because she knew that I wouldn't start the RN courses all over again if they said I couldn't continue on due to time missed. She also spurred me on if I started to slack in any areas. Her daughter, Clara, was born a month before Beth was to be a bridesmaid in our wedding. She now calls Rach and I aunt and uncle. Clara has her mother's smile and every time I think of Beth, Clara's bright blonde hair above her beautiful smile is what comes to mind. 
 Hey Alana,

Sorry it took me so long to get back to you, my memory is not what we call "good." So, how has your week gone? Mine has opened hopes of getting my ketamine treatment again. Dr. Ehlers is really ,hopeful that since the ointment didn't help, they will have less options and have to agree to sending me. I think I've made my comeback from the dance,she still seems to be floating from it, so I'm alright with that.
Anywho, back to the questions...

Have you received the Ketamine treatment?

Not yet, Dr. Ehlers is still trying

 When you think about yourself, what color would you associate with yourself?  

Gray skies, I've always been a fan of rain and storms, but I'm ready for a vacation in the sun.

 How did you feel when you found out you had it and how has that changed, if at all?

The day I was diagnosed, I didn't know enough about the diagnosis for it to have full effect. I was relieved at first because I finally had something to tell my PCP to treat, rather than thinking the bone was breaking again, or trying to treat the plantar fasciitis with injections or shoe inserts. Once Rach and I started researching, the relieve quickly disappeared and anguish took over immediately. I was a wreck, I became the biggest a$$hole my wife has ever known, so much so, that she was both, afraid of me and for me. She would make me promise that I wouldn't hurt myself or anyone else, every night before she left for work. There were nights she left the house crying because she wasn't sure if she could believe me. Her first year as a wife was far more turbulent than she ever deserved, having issues on her side of the family and having me in the mindset I was, I'm surprised she didn't have a nervous breakdown.

 Could you take me through a day in your life?

Every morning I wake up and have to convince myself that I need to get out of bed, there are many days that I lose the argument and call in to work. I have gone to take my first step of the day and fallen on top of my dog who sleeps at the foot of the bed, stumbled into the dresser, hit my head on the nightstand or simply sat down where I was because I wasn't willing to take another step. I have a mountain bike in my garage that I haven't ridden for 2 years. Everyday, on my way to and from work, I drive by the trail my son and I used to ride, I always look through the trees, hoping to see someone working hard, climbing their way up the path to the top and looking on toward the next obstacle. That was my favorite part of the trail, surrounded by trees, just well enough to forget you are surrounded by the city, until you get to the top and see the city creeping up on the horizon, then plunge back into the next mass of trees leading to the ride along the creek. I bring a backpack to work, mainly to carry my cane and the Ketamine ointment, which I have pretty much given up on. I love the rumor mill I get to experience when working with all women, they'll even admit that it's ridiculous. I've heard of so many people that claim I am only doing this to either get out of work or to collect disability, yet they are quick to act like they are a best friend when they come around, especially if they can't make their computer work. At least once a day, I have to listen to a comedian tell me something funny about my foot, to which I have to smile to hide the irritation. By the time I leave work, I am physically exhausted and short fused. I try to keep it together so I don't blow up when I get home, but I'm far from perfect and have my days. The only thing I ever want to do when I get home is lay down put my foot over the arm of the couch. No tv, no internet, just remove myself from everything. That rarely ever happens, most times, I make dinner, clean up what I can, try to rough up the dogs and by then, Rach is home and we get to talking about life matters.

Can you talk more about living with RSD/CRPS?

I have learned to be extremely cognizant of of my surroundings and to keep my guard up at all times. When I go out in public, restaurants, movies, etc., I have to consider who I will be sitting by and where I can tuck my foot. My kids have gotten better about being aware and even watch out for things I may have missed. I constantly say how much I love my VW Rabbit, having to carry around my knee walker has made me realize how handy it would be to have the Jetta Sportwagen or a car with a decent sized trunk instead, I can only imagine the change those having to use a wheelchair have gone through. Before this started, I was working toward getting myself into the motorcycle class here to get my license. I'm glad I waited, I am not able to operate the the shifter and definitely can't lift a bike, so it would have been money wasted.

Are you more appreciative of life and the little the things than you were

before?

I think I'm still fighting through the bitter/depressed stage and seeing the "little things" gets me sometimes. Maybe if I were suffering a terminal illness, I would have a different outlook, but as it is, I just get mad, down, whatever. I rode my knee walker while my kids were on their bikes, there were times on the ride that I wanted to call it quits, but there were a couple times that I was able to let go and enjoy the breeze in my face.

When you are at your best and happy, are there any shapes or colors that you could use to describe how you feel?  When you think about your pain and your foot, what images describe what you're feeling?

When I am able to take my mind off of my foot for even a minute, I get snapshots of different vacations I have been on. Roller coasters, water parks, walking in the mountains, walking on the beach, these all bring to mind a blue sky. But just as fast as they appeared, they are chased off when I step wrong or if the pain just becomes too much to ignore, and the gray clouds take over once again. The first thing that comes to mind when the pain is really intense, is having stepped on a spear tip, then the fire begins, kind of like walking in extremely hot sand without being able to run into the water to find relief. Even the thought of putting on socks is more than enough to convince me to stay home from work. I have contemplated getting something in writing from my doctor that would allow me to either go barefoot at work, or let me cruise around with a sock of some material that does not cause my foot to burn all day.
What do you want to say to others who are going through the same thing?

Compared to many others with CRPS, I feel pretty lucky. Mine has only affected my foot and spread to just above my ankle. Having seen people with this taking over most of their body, I feel horrible and wish I were able to help. Stay strong and keep pushing for new treatments. My wife pushes me to continue to look for more options. If you don't have someone there to push you, join one of the CRPS/RSD facebook pages, there are plenty of people that will get on your case.

 What do you want others who don't live with RSD/CRPS to know or think about?

Take time to research this disorder. There are far more people that suffer from CRPS than one would think. Talk to people online, or attend seminars, you might be amazed at the information you receive. CRPS affects people in many different ways, the person that looks completely normal to you that you see using a wheel chair, could be suffering with one or both legs affected by this wonderful disorder. The fire that we feel in the affected body part doesn't go away because we want to go out and have fun, most of us have had to cut out the activities we once enjoyed and have to try to find people to do things around the house that we were more than capable of prior to being affected.

What do you want me to know?

I greatly appreciate you taking this on, not too many people are willing to show that they care. I saw some of the new work on your page, I have to say that I like that they paired us up. I look forward to seeing your painting.

p.s. I wanted to ask you if you were ok with me making the painting my next tattoo?

Drink Water, Drive On!!!!

All through basic, I wanted curb stomp people when I heard them say this. Since being out, it kind of  became my favorite statement. My kids hate me now when I say it, because it is usually when I have them doing some cleaning around the house and they complain about being tired. Or when my son hurts himself somehow, he should know by now that if it's not serious, that's what he's going to hear. Well, here I sit, trying to push through another day at work and I find myself yelling inside my head to DRINK WATER, DRIVE ON!!! It works for the first few steps, then the magic of the water wears off and I'm back to my new, slow pace. I still remember hearing it and feeling that push to go on, I almost long for those days, just to be able to run up a muddy hill with my pack on and my buddy covering my ass.

I've been trying to keep up on my PT (both therapy and training), I fell off the radar for a while and missed 3weeks worth of appointments, I started back today and I can tell. I don't move my left foot at all during the session, but the mirror imagery really screws with it. I could actually feel the pain level increase as I watched my right foot in the mirror, as if it were my left. Checking sensation of sharp vs. dull (eraser end versus writing end), I get about 60% of it right, which gets a little frustrating, but I'm told by the therapist that is normal in the beginning. She has drawn X's, check marks, lines and O's on my foot, in hopes that I might be able to differentiate between them, but again, about 60%. All of these exercises are meant to retrain my brain. They say that it is possible to remap the route the pain signals take and from there, the brain should be able to overcome the cycle and stop sending the pain signals. 

I go to the gym a few times a week., nothing exciting, but I told my PT that I would try to get up to 30 minutes on a recumbent bike, to try to get blood flowing to the foot. She told me to start at 5 and work up, I got to 15 and fell back to 5 within a week. I hope to get some quality time in so I can get my ass back up and not be embarrassed to be seen without a shirt. I was never a meathead, but I had a couple of shirts that I used to like wearing because they showed off that I was in shape, unless they are under a jacket or another shirt, I haven't considered wearing them for over a year. 

I think we have officially tossed the idea of the ketamine infusion, at least getting to a place that specializes in them. I was sent to a pain specialist outside of the VA and his recommendation was to try a compounded ointment of ketamine, gabapentin, lidocaine and ketoprofen. He said there is a local provider at one of our hospitals that has done the infusions before and if all other efforts are exhausted, that might be an option to reconsider. I took his script for the compound back to the VA to have them review it and tomorrow will mark week #4 since the appointment and now I am told the medication has been approved, but it could take another month to get it, as the VA has to have a pharmacy certified prior to compounding the ointment. WTF? The pain doctor said that the pharmacy he goes through charges around $75 for the ointment, whereas the pharmacy the VA wants to go through charges around $400-500 for the same sh!t. Pretty sure that I will bypass their month delay and call the other pharmacy and tell them to hook me up.

After more than a year, I still see people doing their normal routine throughout my day and think, "How do they plan to carry/do that and still walk with their cane?" Then have to snap back to reality and realize they don't need a cane. It's crazy to me, the games the mind can play on a person. I'll be sitting in my car and out of nowhere go to press a clutch pedal that I haven't had since October of 2011.  

I finally hung up my pride and started using a knee scooter to get around at work and out in public. I was only using it in the house after a long day, but I am to the point that I would much rather be able to keep up as I once did and move around in a little less pain. Like I said, I hung my pride, but I'm getting extremely tired of hearing the word 'pity', even if they are joking. I know it looks ridiculous, but it's almost freeing in the way my bike was. Not having to be the one that everyone is waiting on because I walk too slow is at least one less thing to beat myself up for.

So, my daughter wants me to dance with her in the "Relative Dance" at her dance recital this year. Practice starts in the next couple weeks, I wonder how long I'll last before I need to take one of my hydrocodones, which I try to avoid so I actually notice pain relief when I take one. May is going to be an interesting month, then the recital in June might just be laughable, at least for those who watch me.
That's me for now,
In the words of Frankenstein's monster on "Monster Squad" "Be Good"

Well that sucks

So, here I sit, one month after I was supposed to have my ketamine therapy and I am still waiting to hear from the VA as to whether or not they will be sending to a clinic that specializes in CRPS/ketamine therapy. I spoke to my pain clinic doc yesterday and found out that she wants to reconsider the spinal cord stimulator. She said that she spoke to another anesthesiologist that said it could be used for my foot, just have to implant it at a lower point in the spine. I had my heart set on a non-invasive procedure that had a good chance at giving me some pain relief, now, if the VA doesn't approve the consult to send me to an outside facility to get the ketamine Tx, I might be left with that as a last resort. I'm not saying that I think the ketamine is the absolute answer or that the SCS is not going to work, I just keep getting set for one thing and feel like I'm told that they were just kidding, they were never going to perform that procedure. I finally got my appointment scheduled to see the pain clinic doc outside the VA, hopefully they have either a miracle cure or simply agree with the VA doc that the special K Tx is the way to go.
I have been missing more work recently, averaging about once a week, I know I have the FMLA to cover me, I just wonder how long I can keep this up before I have to cut down to part-time. The crappiest part is that I'm starting to get to the point that my leave that I had saved up for the treatment is in jeopardy of being used to cover my call-ins, leaving me short if I do get to go to Tampa or whatever facility the VA decides to send me. Rach, my wife, has been pushing for the ketamine tx, based off of the research she has found, I have seen good results with HBOT and some others, but not is the same numbers as Ketamine. At this point, I don't care what the treatment is called, just getting me back to walking without a cane would make me happy. I started PT again last week with a person that has received CRPS specific training. When asked what some of my goals were, I swung for the fence and said that I want to ride my bike again, maybe play basketball with my kids. Her reply was, "How about we start with less time using the cane?" That really hit me, I guess I have forgotten how long it can take to rehab your muscles, not to mention retaining my brain, so I guess less time on the cane is my goal, from there we will work on the next attainable goal.
At the beginning of the month, Rach got a new car, which we traded my car for and I took her VW. I have to say that it was a good switch for me, the dead pedal is just about perfect for me to place my foot while driving, didn't have one in the Focus. Depending on how bad the day was at work, I can usually get home without hating life too much. My one stipulation for giving up the Focus was that she had to have a new stereo installed that had the features of Ford's Sync. Since she isn't an electronics nut, she let me pick it out and I managed to find one that was reasonably priced (never underestimate Amazon) and works great. I don't think she realized how much of a good trade it was for me without the stereo, but I wasn't going to say anything until that thing was in.  Since I can't drive a manual anymore, it's nice to have the VW Tiptronic available to somewhat satisfy the need to row the gears, I will admit though, not having that 3rd pedal, I'll often forget that I need to shift if I have been cruising at interstate speeds for a while, that engine gets a little loud if you rev it fairly high.
My boss thought it would be a good idea for me to file EEO papers to avoid any issues if she were to leave or someone new gets appointed over her. Of course, this brought some hostility from an elder that I work with because they were forced to give up their room at the front of the clinic, it was only required for 2 days of the week, the days they originally said they would not be in their room, but there was a huge tantrum and they are now complaining daily about having to be in the back hall every day. So I ask this, Have any of you ever wanted to take someone and yell right into their face that you would gladly give up any accommodations you have been given to be able to function as they do? I know that it would do no good with this hunchback dinosaur, but after her attempt to throw me under the bus recently at a meeting, I just about let my tongue slip and let her know exactly what I thought of her. It is true, no matter how hard you try, you can't get away from stupid. This is where I'll stop before I start to get even more negative.

Have a great weekend, and in the words of Yogurt, "Let The Schwartz Be With You!!!"