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!!!"

Special K Therapy!

Wow, sorry I haven't been as active as I had hoped to be. Life can get away from you pretty quick this time of year, especially with the latest developments in my life. Since my last post, I have had two more nerve blocks, one was the same as the others I have had, two injections above the knee in the same appointment, one block on the popliteal nerve and the other on the saphenous, while the block I got on the 29th was done at the ankle, which they just traced around the ankle just under the skin, in an attempt to block all of the superficial nerves in my foot. The block on the 22nd did a good job of alleviating most of the feeling on the outside of my foot, where the pain is worst, but the arch of my foot was somehow untouched by it. The ankle level block didn't take at all, which was a real bummer, as we were heading into the weekend that my wife and I had planned to knock out as much of the holiday insanity as we could, and to try to squeeze in a nice dinner for my berfday. Well, we got most of our insanity figured out, and we even got to our dinner at Biaggi, it may be commercial, but I love that place.
So, the biggest development-WE HAVE A SET DATE!! I will be trying my first Ketamine infusion therapy starting January 7th. I can't believe how long the days have seemed since the date was finalized last week. Even though Rach (my wife) was the first to bring up the idea of this therapy, she is pretty anxious about it, while I was somewhat skeptical at first, I am super stoked for this to happen. I'm not looking forward to being a slobbering mess, but when I get home, I want to have my first thought be, "I can't remember if I have a banana for my cereal this morning", not "F#%k , I don't want to have to move my foot, this is going to suck."(excuse my language, but that is what I say every morning).  The behind the scenes work that we have had to do is one of the key players in my absence from my story telling. I have to have a babysitter that I feel completely comfortable with 24 hours a day, this is going to be the most taxing issue for my close friends and family, especially Rach. If we didn't a small petting zoo at home, she would be able take care of most of this time, but the 2 dogs and 2 cats need their love too, so we will be working on getting people involved to help her out.       
I can't remember if I mentioned this before, but the meds used for my nerve blocks are ropivacaine and  dexmedetomidine, at times, epinephrine has been added as well to extend the efficacy of the injections. Believe it or not, the injections above the knee, when they have used the blunt needle and jab through layers of tissue, are much less painful and less bloody than the one at the ankle, where they use a typical injection needle. I have had one of the most patient and helpful anesthesiologists helping me through this, that or she is eager to write a paper on me.When my PCP put in the consult to the Pain Clinic, they moved my appointment up on their list and after seeing my foot, they had me scheduled for my first block that afternoon. I was even more uneasy about this diagnosis than I was when the great Dr. Pat York told me that was my problem and told me what he knew of it. Nothing can explain the feeling of the first block, I feel like I'm confessing my drug addiction here, but I couldn't wait for the next injection. With a few weeks missed for various reasons, I have gotten the block every Thursday since June, and another recovery line, none have been as good as the first. I was up and walking for the whole weekend and never thought about the foot, one weekend I got brave enough to try to ride my bike, it was a mistake, but at least I felt good enough to give it a try. For someone that suffers this syndrome, dystrophy, disease or whatever the world decides to call it, and has not had a nerve block injection, I would definitely look into the possibility of getting it done, even a weekend of relief is worth the time and effort many times over. I won't lie though, at least for me, the first pangs when the pain returns are some of the sharpest and worst pains I have throughout the week, just have to ask yourself if it's worth it, for me it most definitely is. 
On a more selfish note, I encountered 2 people today that thought they would like to see if their foot fit in their mouth. Taking the stairs at work from the basement back to the 1st floor, a female employee at the VA (I hold the terms woman or lady because her character didn't bring either words to mind) was approaching the same door to the stairwell that I started through. Seeing that she was coming, I held the door for her, upon reaching the door, her first comment wasn't thank you, it was "Well, you're moving pretty slow these days, huh? Haha." With my typical "sometimes" response, holding my cane steady, I allowed her to hit the stairs first, upon reaching the top of the stairs she held the gate for me, being close to the bottom I told her not to wait, but this time she stated, "We all know gimpy people need all the help they can get". I know I took more offense to this than necessary, but my response was, "Most of us prefer the term disabled vet." To which the apologies started to pour out like Niagara Falls. I walked past and through a door behind her and let it shut in her face, I don't always let things get to me, but this somehow made it through and I wasn't about to attempt to make her feel better about her comments. Being an employee at the VA, one should have a little more tact than that when dealing with someone you don't know who has an obvious disability. The second incident was in a clinic room, I was helping another nurse by giving a flu shot. As I entered the room, the patient's comment was "Ah na, you got me the broke nurse?" As soon as he saw the 'Eat sh!t' look, he had the same slew of apologies. I couldn't even respond to this one, I just told him to get his arm ready and I gave him the shot. Human ignorance seems to have exploded to an entirely ridiculous level. What ever happened to the days of showing people respect? I know I let myself get too bothered by these two, but I shouldn't be required to wear kid gloves every time an ignorant ass makes a comment or performs an act that deserves repercussions. 
Oh hell, how could I have forgotten this? The Thanksgiving fiasco at the local mall:Shoplifter is caught, resists arrest, someone throws a trash can, people yell shooter, the entire mall becomes a stampede of hysterical shoppers and shoplifters (opportunists love these-people grabbing an armful of clothes off of the racks and running out of the store), people are turned into the human Mufasa (nobody died or was injured, relax) and Omaha has proven once again, that as hard as we try, there will always be someone hellbent on ruining what should be a mostly uneventful evening. Prior to all of this, my wife and I were with the kids, in Younkers, she wanted to find a pair of boots for her and my daughter, a sweater, and she wanted me to look at a scarf. I suggested that we split up to save time, lucky for us, she wanted me to see the shirt she wanted, so we stayed together. We got to the scarf section, I changed into one of the store's coats, and was trying on the scarf as this all went down. Rach being Rach, got the kids down and was starting for the door with them. I stayed where I was, checking the area, looking for anyone that was hurt and trying to see if there was a credible threat, or if it was standard idiocracy. This ROYALLY pissed off the family, who were all outside expecting me to pop out any time. After Rach's second reentry to get me to come out, we walked around the mall to the car. There was a lady in her car trying frantically to reach her kids, I can't describe the horror in this lady's eyes, but thankfully, after an eternity, she spoke to each of her kids and they were fine. Lesson learned?:As long as there is a way to ruin a good time, you can bet that someone is doing their best to be that guy.

Things remembered.

When I think back to when I broke my foot, I can still remember the horror I felt when I was told that I would most likely not be able to have the career in the Army that I have always wanted. I was shining my boot one night and the troop commander approached me and asked what I planned to do after my discharge. I looked at him and told him that my career wasn't over yet, I still wanted to fight and once my foot healed, I would be back in full gear and ready to give hell. We talked for a while and when we were done, I honestly believed that I would be back in my unit with the guys I had trained with, sweating out the days and patrolling whatever site we were assigned to. As my unit shipped out without me, I began to see the truth. Every time I would think my foot was healed and I would try to run on it to try to keep fit, it would break once again and I had to start the whole process all over. Finally, I was taken to the med board, they told me it was time to hang it up. I lost it, the idea of giving up my dreams of one day wearing the uniform of a warrant officer, feeling the honor of knowing that I had done my duty and served with the best people this nation could ask for, destroyed me. This was the most humbling experience I had ever encountered, going in thinking that I would work my way through the ranks and become the person I knew I should be, only to be told that a broken foot would end my career before it even began, stripped every bit of confidence I had.
In 1994, I lived in one of the not-so-great parts of Omaha. I used to ride my bike to a friend's a few blocks away to get a ride to school and would ride home with one of my teammates after practice. On a Wednesday in August, I was going to pick up my bike and was jumped en route. I was bad enough that I was hospitalized, I don't remember the day I was discharged but the one day I remember, a nurse was talking to me and telling me it was Friday. I tell this story because it relates back to my sister's comment about my "angry white boy" music. I can say with certainty that I was a pissed off teen for some time.
The first time I met my friend Brandon was on his birthday, it was in October 1994, just over a month since I was jumped, we were at a picnic our parents had dragged us to. The first thought through my mind when I saw him was that I wanted to kick his ass, I didn't know a thing about him, other than he wore all black and I didn't like him. Once I saw that he was there with a very good family friend who turned out to be his stepdad, I put the thought aside and tried to be sociable. We ended up being good friends and have been for 18 years, I don't know why he stuck around, if you ask him, he will tell you that I was an asshole. The next time I was to see him was my birthday in December 1994, the lucky day for me, I was being moved out of the neighborhood that I was raised in, to one that, in my mind, was full of people that didn't deserve to breathe. His lucky day because he got to help us move out of the POS house we lived in. I remember being in a crappy mood because I still had my black eye and I was moving out of there, even if it was a crappy house in a crappy neighborhood, I wasn't looking forward to moving to another area where I wouldn't be able to continue in the school that I really liked. This attitude continued for quite some time and ultimately led to me ruining any chance I would have of going to any of the military academy, which was one of the excuses I used to make it easier for me to hate that school and drop out.
I spent most of my time working and being a dumb teenager, not causing major trouble, but not being a model citizen. Brandon's mother was a bit smarter than me and tried to limit any time he spent with me, I think she saw me as a bad influence, she might have been right, if he had been a person with any less character. So, when I wasn't hanging out with him, I found other friends that liked to do stupid crap. Lucky for me, I didn't like to do as much stupid crap as them and started to separate from them.
Around this time is when I met my ex. Long story short on that-she got pregnant, we married, Kyle born in October 2000, 9/11 happened, I toyed with the idea of the military again and in 2003 joined the Army. Liking the idea of getting to play with all of the boom sticks, I joined as a Cavalry Scout, best MOS to start with if you ask me. Aaannd, we're back to me breaking my foot. Shortly after I got home, we bought a house and just a while later she was again pregnant. I got my CNA just after my daughter was born in 2005, I was working during the day M-F as a local truck driver and weekends as a CNA, in addition to going to school at night M-F, getting prereqs out of the way for nursing school. By December, I couldn't work that load anymore and started full time evenings at a nursing home. Things hadn't been going well for a long time, but in 2007, things started getting bad between us and in June, I decided to move out.
I started at a hospital in July, working on the cardiac floor. Thinking that I would like being single for a while, I was able to have my kids when I didn't have school or work and could have fun without the tension of the relationship around us. Things were going well, work was good, classes were interesting, and time with the kids was great. Apparently being single didn't work for me, in late September, early October, I met a girl named Rachel. I don't know how to explain it, but she hit something inside me that I hadn't felt before, and I couldn't resist the urge to spend time with her. Her twisted sense of humor, her absolutely beautiful eyes and smile all made me feel like a school kid chasing after the hot girl of the school. I won't lie here, no point since I have already told her, the first thing I noticed about her was her butt, and it is still my favorite. As  one might guess, her coming into my life created quite a bit of turmoil with the ex, I know that it wasn't long after I left her, but I can't help how things turned out, I was and will always be insane about Rach. She has been so much more than I could have asked for. She was a 23 year old single girl, living in her own one bedroom apartment with her cat. From the time she met the kids, she was doing all she could to help them adjust to their new situation and make sure that we all kept a strong bond. I owe her my life and I'll spend the rest of it trying repay my debt.
Rach and I were married in May 2011, not counting the births of my children, that was the best day of my life. Everything leading up to the wedding was chaos, like most are. The title of this post came to mind as I was looking at the wine box that I built for our wedding day, it has two wine glasses that we had engraved from the 'Things Remembered' store, we spent too much money in that place, most of the wedding party got their gifts from there as well. Minus the cakes, with the help of a few friends and family members we did all the coordination or construction of all things needed, but we worked on everything together, which I think made it all worth more than if we had paid someone for it all. We spent the night dancing, making rounds talking to everyone we could, a great friend of ours shared her beautiful voice and sang to us, our dance that we had been working on went great, and we had a great time with our friends and family. The honeymoon in Orlando was a mix of good and bad, her feet were hurting, the hotel was less than charming and we didn't do enough research before we went, so other than the parks, we had an adventure with nearly every outing. The good was the times we had at the parks, that we had a good time getting lost on our adventures (see: Biolab Road Florida) and spent time with some amazingly fun family of hers that live in Florida. That trip is the last time Rach remembers me being happy. Shortly after our return home, the pain started in my foot and has continued to increase its intensity.
To attempt to describe the climate of our house for the first 7 or 8 months would take too long, let's just say that I'm amazed she still wears her ring and has stuck with me through it all. Knowing Rach, having her by my side and pushing me along, and knowing that she is trying hard to keep my head above water, while also shouldering the burden of those things I can no longer do, has proven to me that I made the right choice when I proposed at my pinning ceremony (nurse rite of passage). If I didn't know Rach, I might still be wondering what the hell is wrong with my foot, her friend Dr. Pat York is a podiatrist and when I went to see him, he diagnosed me almost immediately based on symptoms we told him and his visual assessment, I can't thank that man enough. Through a mixture of meds and a learned ability to finally talk out some of our issues rather than turn them into a massive fight, the climate seems to have improved, but could still be better.
So, this turned into a long winded summary of some portions of the last 18 years of my life, it's amazing how this outlet can bring so much to mind. I know that we've all had our ups and downs, for some reason, I have always had a hard time pushing mine aside and moving on, I guess I am hoping that this blog does for me what I have not been able to do before. The nights of having the violent dreams, no sleep and waking up in pools of sweat would not be sorely missed if this does the job.  I told carrue that I would be posting links that have come from either my wife or Dr. Haynes-Henson, there are some hopeful treatments mentioned in some, please feel free to check them out. Good night all, or good day, have a wonderful day.

Trying to maintain

I have been fighting the idea of doing this for some time now, I don't try to be the 'Woe is me' guy. This blog is not meant to be my pity party, I am not looking for the "Aw's", "poor baby's" or any other kind of sympathy, I have finally gotten to a point that I feel I have to get this out and this seemed like the best way for me to get it done. If you don't like what you read, please save yourself the trouble of attempting to start an argument or make this into whatever you want it to be. This is strictly for me to try to get some burden off of my chest and see if it makes tomorrow just a little bit easier to get through.  

I have worked in the medical field for just over 7 years, I have cared for people in every stage of life. Many times, I have heard people tell me that they rated their pain at 10/10, which, according to the chart, means that they are unconscious due to the level of pain they are in. I doubted many, especially those that I saw screwing around in their rooms, or doing the things that a person that claims to be in that much pain couldn't possibly do. Now, here I am, sitting on my couch, typing this out with my foot throbbing and hoping the pain and sleep meds take effect sometime soon. It really sucks to be on the opposite side of this. I used to look at some people, convinced they were full of crap, but bit my tongue and took care of them. I'm sure there were times when some of them could tell I didn't believe that they were in pain, now I feel like crap because they may have been able to wear a better mask and hide some of their pain better than I was able to comprehend. I knew that most people I encountered were legitimately hurting, but some were (in my eyes, at least) obviously milking the system.

It's hard being the guy that wants to do everything he sees other fathers doing with their kids, or the guy riding a bike, walking a dog or enjoying the time hanging out with his wife and friends, but can't because he knows that, even if it doesn't hurt too terribly bad right now, everything that he does will be the reason he is even more miserable than usual later. When he does suck it up and meet up with friends or do the activities he misses, he feels he has to put on a mask and try to be something he once was, in hopes of his friends not getting to the point that they would rather not see him because he is always negative or complaining about his pain, and he doesn't want their fun to be ruined.

Going to a restaurant and having to request a normal height table because the high tops cause his legs to dangle, causing blood to pool in his foot and bring unimaginable pain when he steps down. When his son or daughter ask him how to do a certain move in sports and he can't show them because he can't get push off of his foot well enough to perform the move right. When his daughter asks him to dance with her and there is no way he can perform the moves because they require too much use of the foot. When his daughter is near tears because her father has offered to stand next to her and help her keep the steps right for a relative dance because her partner, my lovely wife Rach, isn't there but she is too embarrassed to have him next to her, so after he has told her that she doesn't have to have him with her and leaves, she chooses to have her mother's BF dance with her instead. When his son smiles as he gets an idea for a fun activity and then the smile vanishes because he realizes that his dad can't participate. These, among many others, are the things that this person has had to come to terms with over the course of a year as this "syndrome" has taken its toll on him and his family. I no longer doubt the claims of those that say they suffer from chronic pain, I see the doubt on people's faces as I traverse parking lots, walk in stores or work through my day, it sucks feeling like I have to reassure myself that my pain is real, knowing that those who doubt me would give all their possessions to rid themselves of this condition if they were forced to live through one day with it.

As this whole thing began to unravel, I slowly started seeing the activities that I enjoy become more and more limited. Before I was told my diagnosis, I was sent to primary care, podiatry and ortho, all with no results. I was so bad at times that I was using the electric carts at grocery stores. I walked with a cane for nearly a year. Once I was finally told what my diagnosis is, I was able to get medication that would hopefully pinpoint the symptoms and enable me to get rid of my cane, but I have had to submit and resume the use of the cane again after almost four months without. I forced myself to make efforts to perform tasks that I had not dared since the onset of this constant pain. The pain level didn't get much more tolerable, but there are times that I can stand like I actually have two feet and not think about it. I still had days that I would have given an eye to have my cane to help me get through the day at work, I happened to have one of those days not too long ago. It's amazing how much of a difference a medication can make. I was almost positive that Tramadol had lost its effect on me me. I ran out on a Sunday night, Tuesday at work I was ready to shut the door to my room and smash everything around me, just in hopes of hiding the pain, if only for a few minutes, that day, I discovered the value of the Tramadol. The constant burning, stabbing, tingling, numbness and swelling in my foot has made it nearly impossible to focus on most any task.

My memory is the worst it has ever been, minus the week I was jumped, aside from what I have been told, I still don't remember the exact happenings of that week. I don't like to admit this, especially because since I met my brother, he has known me to be his safe for information that he needed to have kept safe and remembered at any point. I saw my brother and his family for his birthday party back in October, I was introduced to his mother's friend Dave, and as soon as he said his name, I forgot it, to be completely honest, I forgot it as I was typing this, my lovely bride was here to remind me.
I am just lucky that I work for one of the most patient doctors anyone will ever meet, the stupid things that I forget throughout the day, would be unacceptable to almost any other doctor. The number one reason that I have a job in a clinic is to get the vital signs of those coming to see him, I am sure he would say it has only happened maybe once or twice, but I am sure that I have done it more than a handful of times. I have to interrupt many times throughout the day to ask him something about the person he is seeing or about an order he asked me to perform for someone else.

Sitting here in my living room, looking at my wife, I can't help but remember the spring nights that we spent trying to get the timing and steps of our dance down for our upcoming wedding. She has asked me at times if we will ever dance again, looking into her eyes, I can do nothing but attempt to bring her in to my arms, hoping she thinks I am trying to console her, while really trying to hide my shame that I feel knowing that she deserves something much better than a 32 year old husband that can't perform many tasks around the house, and can't take her into his arms and dance with her throughout the night, like we did in May of 2011.  It seems so long ago, all of the changes we have been through have been so taxing on us both, sadly though, I feel like she has taken the largest portion of this burden upon herself.

I have been lucky to have kids and coworkers that are beginning to understand the limitations I now have. The kids went out and raked the leaves, my son has mowed the lawn since last summer, my daughter is eager to help in any way she can. I have had coworkers bring patients to me, to save me from having to walk to the front to get them. I still have a hard time asking for and receiving help, but as the pain continues to increase I have had to learn to be more accepting of the help and more up front about my limitations. 

When I wake up multiple times a night, I sit and wish it was just a dream and I will really wake up to a life of normalcy. No matter how many times I tell myself that it will get better, the sleepless nights and pain filled days are a brisk reminder that this is reality and it's here to stay. I keep thinking about a comment my sister said about my "angry white boy music", she is right, I have always listened to that kind of music, especially over this last year, I don't listen to much other than that type of music. I have grown to be an angry person, I have felt that it is somewhat normal for a person to be more than angry about the situation I am in. The statement "you still have your health" or "it could be worse", only serve to bring about even more anger. I don't want someone that isn't in my shoes, experiencing the feelings I have daily, to tell me that my pain is not worth getting upset about. If you have the nerve to tell a person that they are not in that much pain, yet you have never had to live one minute of your life like they do, please keep those comments to yourself, they really only serve to piss the person off and inspire them to create a distance with you. Oh, and the childish "gimpy. hopalong, limpy" and other comments, could get you much more of a reaction than you expect, especially if they are having a day like some I've had recently.
At my most recent appointment with my PCP, Rach informed him that she has noticed a vast difference in the size of my calf muscles. My right leg has remained the same or maybe a little bigger, whereas my left has began to atrophy. Not having noticed this before, it was a bit of a shock, but it did explain why my left sock was always falling down more than the right. While sitting with Dr. Ehlers, we discussed the treatment plan and possible outcomes of each treatment discussed. I thought I knew that this was a lifelong issue that I would have to deal with, but when he cut the BS, looked me in the eye and stated that RSD will not simply go away and I'll have it the rest of my life, I just about lost it. Here I am, about to turn 33 and I am told that there is pretty much no way I will ever be able to do the things I have missed out on throughout the progression of this syndrome's hold on me.

People try to tell me that I shouldn't let my pain rule my life, I don't waste my time trying to explain to them that I have tried nearly every sort of distraction, suppression and medical device/practice/exercise that has been mentioned, all to know avail. Some might make the pain more tolerable than going without, but most of the time taken to perform such activities is longer than the relief brought by them. I have been lucky to have a team of physicians who are doing as much research as Rach has been, to try to find a more effective, longer lasting treatment or therapy. I have been receiving nerve block injections in my knee since June. The meds used are Ropivacaine, epinephrine and Precedex, when they fully surround the Saphinous and Popliteal nerves just above the knee, I get at least 2 days relief, sometimes up to 4; sometimes they are unsuccessful and the only thing I get out of having endured the joy of the injections is numbness from the knee to just above the ankle.

So, this is my blog, my place to spill what comes to mind. Please, feel free to leave comments, I do hope to post treatments and results as they come. If you know anyone with RSD or CRPS, let them know that this exists, maybe they might find some information useful.

Thanks

Jim

http://www.anesthesia-analgesia.org/content/111/6/1548.long

http://www.rsds.org/membership.html

http://www.rsds.org/News/biofeedback.htm

http://www.resourcenter.net/Scripts/4Disapi6.dll/4DCGI/resctr/list.html?Action=Resctr_DirectorySearch&Time=439679824

http://www.rsdfoundation.org/en/ketamine_emails.htm