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?